One Shoe Does Not Fit All
They say CLL is a “good cancer” because majority of patients have time to prepare, get used to the idea of having an incurable cancer through the “Watch & Wait” period. Frankly, if you want my two cents, “W&W” should be re-labelled “Watch & Learn” or “Watch & Get Ready” or “Watch & Plan For the Future”. A recent meeting with a very nice couple I met highlighted for me once again how very different this disease can be. Not just in terms of disease presentation or prognostic indicators or long term outcome – but also in how people respond to the initial diagnosis as well as therapy responses. Are there any “right” or “wrong” ways of handling a CLL diagnosis? Not really. It is your body, your life, your CLL. You own it. You are the boss, the only decisions that make a damn bit of difference are the ones you make.
Having said that, I thought it might be useful to examine the pros and cons of the various approaches I have seen over the years, as I worked with literally thousands of CLL patients – up close and personal. I look forward to a lively discussion following this article. After all, each of you are in the driver’s seat. I am but a back-seat driver. The closest I came to experience CLL firsthand was taking care of my husband.
Let us count the many ways patients out-source the worry of CLL.
Caregivers
First line of defense immediately after diagnosis is out-sourcing the worry to a devoted spouse or other family caregiver. If you have someone close to you who is willing to step up to the plate, who is willing to worry about your health with no reservations, count yourself blessed. On April 9th we have a workshop scheduled to discuss prognostic indicators. But there are some prognostic indicators that are not discussed routinely in learned journals. Among them, one of the most important is having stable and devoted family support. Trust me, you are going to need the support. There will be dark days in your CLL journey, days when you will need to lean on someone you trust with your life. Literally. Loving family support, along with adequate insurance coverage, makes a big difference in how things work out for our guys.
Where to draw the line? It is great to have a loving spouse or caregiver go with you to doctor’s appointments. Two pairs of ears are much better than one. It really helps to have someone on your side of the consultation table to ask questions, take notes, pay attention when your mind shuts down at the mention of the big “C”. Spouses who have shepherded their loved ones through heavy duty therapy regimens or a transplant know it is no small thing that they have undertaken.
Right after my husband was diagnosed, for about 3 months or so, PC wanted to have nothing to do with CLL. He left all the reading and learning to me, I made all the decisions – including the decision to get a second expert opinion. I remember how stressed out I was. It was hard enough dealing with the fact that my beloved husband had just been diagnosed with CLL. Dealing with all the practical decisions on my own made it so much harder. Fortunately for me, PC soon recovered his trademark calm assurance and the the next eight years of his life with CLL was a true partnership. We spent some of our best years together, memories that I would not trade for anything. CLL Topics would not have been born but for his active support and participation in the process.
So, exactly how much are you out-sourcing the “Work & Worry” to your significant other(s)? Are you drowning them in responsibility? Or, at the other end of the spectrum, are you such a control freak that you are shutting them out completely, giving them no say in the matter? Speaking as a CLL spouse, I hope you will believe me when I say this disease is sometimes harder on the spouse than it is on the patient. Remember, CLL is a “good cancer”, you may need to depend on your personal relationships for years, decades even. You may want to think about burn-out, not just for yourself but your family too.
Physicians (Local Oncologists)
This would seem to be the right way of out-sourcing CLL worry, let your medical advisors take care of the decision making. After all, that is why they are paid the big bucks, right?
A few decades ago, that is exactly what your fathers and mothers would have done. CLL was a simple and straight forward business. You started off in “W&W”, and if you were lucky, you stayed there for a good long time without ever needing therapy. Nothing for the patient to learn, since very little was known about this disease. Early intervention did little to improve survival since we did not know much about which patients were likely to respond well and which would have nothing to show for all that therapy related toxicity. If therapy did become necessary on account of pesky “B-symptoms”, there was little angst about deciding which drug to use. For a long time there was only good old chlorambucil; later on fludarabine and prednisone were added to the list of available drugs. Length of remissions depended on patient prognostics (of which we were mercifully unaware in those days). As one wag put it, “Life sucks, and then you die”. How much “easier” can it get? No angst, no decisions to make, you just go for the ride. Uggh!
How things have changed for today’s CLL patient! Should you do the classic W & W? Or are you better off getting treated with one of the new fangled kinder and gentler drugs to control the CLL, see if you can make it into a chronic disease similar to diabetes or high blood pressure? If you are eligible, should you volunteer for an early phase clinical trial using a kinase inhibitor such as CAL-101? When therapy time rolls around, should you bring out the big guns such as FCR, or should you try single agent Rituxan or ofatumumab? How much green tea supplement should you take? How about vitamin D3? When is it a good time to use growth factors such as Neupogen, Procrit? Should you ask your doctor about that odd looking tiny little “mole” your wife saw on your back last night?
This is but a short list of the questions patients have for their physicians. I bet you can think of dozens more. Problem is, while the disease has grown in complexity and matched by increasing list of questions we want our physicians to answer, the amount of time physicians have to spend with each individual patient has decreased. Are you sure that in the 15 minutes you have for your consultation, he is going to be able to answer all your questions, evaluate your situation and see if anything has changed with reference to several years worth of your prior CLL history, write the scripts and make therapy recommendations?
Then there is the question of whether you should depend on local oncologists or make the extra effort to go to a CLL expert center. (I am not even going to touch the subject of depending on your brother-in-law, the Ob-Gyn, as your primary medical safety net. Oncology, hematology and immunology are very specialized. Would you take your precious Porsche to be serviced by a guy that fixes refrigeration units for a living? In any case, there is a good reason why doctors are not supposed to treat their own family members) Below is a comment I posted a few days ago, on the subject of local oncologists.
It is not my intention to paint all “local oncs” with the brush of incompetence. Far from it, many local oncologists are hard working and responsible folks who make the extra effort to stay on top of their game. These are the ones that attend professional conferences, take CME (continuing medical exams), spend their evenings reading journal articles after a long day at work. Local oncologists are by far the most important healthcare providers of the vast majority of our patients and our healthcare would grind to a halt without their devotion and service.
But in every pile of people there are those that fall into the bottom 25% or lower. The word “oncologist” describes some one who treats cancer patients. ALL kinds of cancer patients. The statistics do not favor our guys. There are vastly more “solid” cancer folks out there, people with breast cancer, prostate cancer, lung cancer etc. Even among blood cancers, there are many more NHL (non-Hodgkin’s lymphoma) folks than CLL patients. So, chances are good that majority of local oncologists with a widely diverse group of patients see very few CLL patients in their practice.
My concern is this: how up to speed on the latest understanding of CLL, what makes it tick, how best to treat it, what can go wrong by way of infections and adverse effects etc will be a local oncologist who has seen only a handful of CLL patients in his entire professional life? How flexible is he in learning new things in a rapidly changing paradigm?
If you have a local oncologist who goes the extra distance, or one who happens to have a special interest in blood cancers, immunology etc, or just happened to have seen a lot of CLL patients in his practice, you are in luck. Also, many local oncologists are more than willing and happy to confer / consult with their CLL expert colleagues on difficult situations. That is sort of the best of both worlds, having access to expert opinion to guide decisions, as well as the convenience of local delivery of healthcare.
How do you know whether your particular guy is good, bad or indifferent? There is no sure fire way of telling; a lot depends on you as well, what you are looking for. Do you need a lot of hand-holding? Are you looking to out-source this whole CLL business and let someone else worry about it? Are you very hands-on and able and willing to keep track of “best practices” as they come down the turnpike? Conversely, are you still in denial and would prefer a physician that does not scare the living daylights out of you by going into all the scary possibilities? Oncologists are often forced to practice psychiatry without the benefit of having been trained to do so. Just something to bear in mind – your personal comfort and working relationship with your oncologist makes a huge difference.
A few simple questions may be worth considering: ask your local oncologist how many CLL patients he has treated. Does he participate in community based clinical trials for CLL? Would he have a problem if you went to get a second opinion to a CLL expert center? Would he be willing to work with the CLL expert down the road when you get into therapy? Last but not least, how does he feel about informed patients wanting to participate in their own healthcare?
A long winded comment, but I thought the distinctions had to be made between adequate and less-than-adequate healthcare delivery at the local level.
How about expert centers?
If you have gold plated healthcare insurance and can pick and choose where you get monitored / treated, can you safely outsource all of your CLL worries to your CLL expert? Yes, to a certain degree. You are very likely to get expert testing, quality lab work that you can depend on and an expert that is not likely to be flummoxed by less than typical disease presentation. He is also likely to be aware of the many therapy choices available to patients today. So far so good.
But is there an implied conflict of interest in how expert centers do their jobs? Experts get to be experts by doing cutting edge research, and we all need to be grateful that someone is doing the research – otherwise, where would be be in terms of new and improved therapy options down the road? Is there a conflict of interest between the role of the researcher doing everything he can to speed up recruitment for his favorite clinical trials, and the devoted physician looking out for the best therapy options for the individual patient in front of him?
I submit to you that clinical researchers are human beings, like you and me. They are not monsters, nor do they wear shiny halos. They put their pants on in the morning one leg at a time, just like you and me. They have their pet peeves, their ambitions, their desire to do something worthwhile with their lives, be recognized for the work that they do. In other words, a complex mix of altruism, selfishness, high minded desire to save lives and need for ego strokes – just like the rest of us. One thing I can say in their favor: majority of them work awfully hard, putting in long hours each and every day over many decades of their lives. Depression and thoughts of suicide are apparently quite high among physicians, especially so for oncologists.
But there is no question that different expert centers “push” different clinical trials, the ones that they have invested in the most. Unless you are willing to donate your body to science without really being aware of it, I think it is kind of important to know what you are signing up for, before you allow yourself to be sweet talked into it. Below is a pop-quiz I published in an earlier article. See if you can ace it.
A couple of years ago I got to know a very wealthy and determined member newly diagnosed with rather aggressive CLL. He got disillusioned with his local oncologist pretty quickly, for the usual reasons. He wanted nothing but the best in treating his disease, and he told me he can afford the best. He asked me for the names of the top five CLL expert centers to visit. He wanted to get guidance on his specific case from the best minds in the business.I gave him the names of the five best centers – most of you who have been round the block for a few years can guess them easily. I also gave him a sealed envelope with the therapy recommendations I expected he would get from each of the five centers he was going to visit: FCR, PCR, flavopiridol, “gene therapy” and Campath.My friend went to each of the five centers in turn, asked each expert he met to do detailed testing and prognosticating, expense be damned, and come up with the best therapy option custom-designed to his particular needs. Each center obliged, at significant cost. My friend is wealthy and did not care about that. Heck, he wore nothing but custom made clothes and custom made shoes, lived in a custom designed home that he shared with an almost-custom sculpted wife (snicker), why should he not get custom made therapy for his cancer?He came back from his voyage of discovery chagrined and confused, with five completely different recommendations from the five expert centers. He then opened my sealed envelope and I am pleased to say I was spot on in my guesses. I could have saved him all that fuss and expense. I got all five recommendations exactly right and matched each recommendation correctly to the expert center. Each center felt the particular clinical trial they were focused on at that particular time was the best suited therapy option for my friend.(Pop quiz: can you match each of these therapy recommendations with the expert center most likely to have made the recommendation? If you can, give yourself a pat on the back, you are now a savvy consumer of health-care.)A couple of years ago I got to know a very wealthy and determined member newly diagnosed with rather aggressive CLL. He got disillusioned with his local oncologist pretty quickly, for the usual reasons. He wanted nothing but the best in treating his disease, and he told me he can afford the best. He asked me for the names of the top five CLL expert centers to visit. He wanted to get guidance on his specific case from the best minds in the business.
I gave him the names of the five best centers – most of you who have been round the block for a few years can guess them easily. I also gave him a sealed envelope with the therapy recommendations I expected he would get from each of the five centers he was going to visit: FCR, PCR, flavopiridol, “gene therapy” and Campath.
My friend went to each of the five centers in turn, asked each expert he met to do detailed testing and prognosticating, expense be damned, and come up with the best therapy option custom-designed to his particular needs. Each center obliged, at significant cost. My friend is wealthy and did not care about that. Heck, he wore nothing but custom made clothes and custom made shoes, lived in a custom designed home that he shared with an almost-custom sculpted wife (snicker), why should he not get custom made therapy for his cancer?
He came back from his voyage of discovery chagrined and confused, with five completely different recommendations from the five expert centers. He then opened my sealed envelope and I am pleased to say I was spot on in my guesses. I could have saved him all that fuss and expense. I got all five recommendations exactly right and matched each recommendation correctly to the expert center. Each center felt the particular clinical trial they were focused on at that particular time was the best suited therapy option for my friend. Can you match each of these therapy recommendations with the expert center most likely to have made the recommendation? If you can, give yourself a pat on the back, you are now a savvy consumer of health-care.
Your Online “family”
Patients of today have online resources available to them that people did not have access to, just a decade ago. When my husband PC was diagnosed back in the summer of 2001, ACOR listserv was just about the only online patient site available for CLL patients. I joined, learned a lot, posted a few times and decided to leave to start my own group. Our first attempt was a Yahoo group. That lasted for six months or so, before PC and I decided to go the extra distance and start CLL Topics website. And now we have “Updates” and “Harvey’s Journal“.
I am all for egalitarianism, the right of every person to have a voice and the right to be heard. Except in the classroom.
As a new member visiting ACOR (or any of the present day internet chat rooms), how does one go about distinguishing the good information from plain silly stuff? If you knew enough to make the distinction, you probably did not need to go to the chat room discussions in the first place. Many moderators take the position of hands-off policy. All comments and posts are welcome, as long as they are reasonably polite and respectful. That may pass the test of political correctness, but in my humble opinion it does not serve patients well. Updates is a moderated website. I can and do moderate comments, deleting those that do not meet our guidelines. You have no idea how many “fun” food fights we have avoided in the process! Yes, there is no denying the fact that my moderation takes away the ‘rights’ of some of our members to post whatever they wanted. But the other side of the coin – a truly unmoderated site – has its own downsides.
- Do you want to base your own therapy decisions on anecdotal information that may have no value when it comes to your own situation?
- Would you stay away from a well regarded therapy choice because of a vocal commenter who happened not to have had a good response and is now full of sour grapes and post purchase remorse?
- Without some effort at quality control, who is looking out for protecting you from snake oil and ‘voodoo’ medicine?
- Does it really help the process of learning about CLL when the site gets hijacked periodically by political / religious / other irrelevant issues?
How much can you out-source your CLL worries to your online buddies? Your CLL has a sudden hiccup and you post about it on one of the internet forums. A bunch of people write back, offering their good wishes, prayers and words of support. All of which helps you feel better. But does it really help you make better decisions? When push comes to shove, you are still the one facing the decisions. No one else can make the hard decisions for you, certainly not even patient advocates like me.
I think most of you know my own preference for pro-active patient participation in healthcare. But that does not mean it is the “right” way to do things, or the only way of dealing with CLL. True, it is a little bit easier making sure the help you are getting is not way out in the left field if you yourself know a little bit about the subject. But that does not mean you have to become an expert, spend all of your time worrying about CLL to the exclusion of actually living the life you do have, or becoming paranoid about every little burp in the road of life.
Like all Goldilocks dilemmas, the right answer is very much dependent on the individual answering the question. How much CLL out-sourcing is just right for you? I look forward to your comments.
44 comments on "“Out-Sourcing” CLL"
You are absolutely right that we are all responsible for our own decisions. I have been watching and waiting for 3 years and it is time to get treatment, going to a CLL center at UCSD and consulting with experts in the field was helpful but the bottom line is it is my decision and even the experts don’t have all the answers.
Russell Haag
WillB425
Chaya,
An excellent article. Wow! Five different diagnosis from the top five researchers? You are right on. Next comes the laying out all five, and decide, which one, some of one, a little of the other…all of the above?? Decisions, decisions.
Many thanks for the breakdown…top drawer…as usual.
William Bates
Chaya, fellow travelers:
Thanks for a wonderful article. It really lays out the reality of the situation. Add to what you said, one can do all the “Right” things and things still go wrong, as you well know.
My Auto BMT in 2000 sure seemed to the the “right” thing and I had a six year remission. The next step was FCR which sure seemed to be the “right” thing and I had only two years remission. Turns out the prior Auto BMT made me a poor candidate for FCR. My local onc now wants to do Bendamustine and Rituxan. NOT!
I just returned from seeing Dr. Byrd at OSU Cancer Center. I was really impressed with his seeing the whole person and where I am now. What ever path we choose gives me confidence that the treatment will be what is best for me.
Heart felt thanks for your dedication and concern for all of us.
Jim Lawson
Hi Chaya,
This is the only site I now follow; like your straight, open language and lack of sentimentality; although you are a ‘patient advocate’, you never fall into the trap of pitying or patronising; something which only too frequently becomes a main ingredient in many caring organisations. Good for you and may it long carry on. Be an example and don’t loose the twinkle in your evidently very shrewd eye.
Thanks for being there, and stay well.
Mette
Chaya:
As usual, this most recent article is once again “right on target”! The articles content is very generic and one could easily insert any type of cancer where you state “cll” and it would be as meaningful.
I have a friend who was just diagnosed with myeloma. I am going to forward this article to him – as I believe that it will be very meaningful and helpful to him, as a newly diagnosed cancer patient.
As always, thanks for your succinct and very meaningful article.
Hope all is well with you? Thanks!
Alan
Pittsburgh, PA
A very timely article and covers issues I have grappled with in the past.
After 6.5 years of almost constant treatment and a mini allo transplant to come on Friday this is what I figure.
Doctors know a lot about treatment effects on populations of people with CLL. They still really know next to nothing about how to predict disease progression, or the effectiveness of treatment in a particular person.
With the exception of p53 deletion(in 2008 I was not deleted, now I am) prognostic indicators are still limited in what useful information they can offer an individual. Unless as Chaya has indicated in her prev articles, ALL clinical trials include monitoring of an AGREED set of prog indicators which would be of value.
‘Fast track’ (?Bucket C) CLL needs to be given a new name to convey to heamatologists and other health care providers the seriousness of the disease. I was told I had 20 years to live (don’t worry your pretty little head), then that I had disease with a median survival of 16 years (ok so tht’s 50% of people alive after 8 years). Oh then I’d need to think about a transplant, as I would probably only live another 12 months (totally refractory disease) and guess what, I no longer met the transplant criteria on ‘X’ hospital protocol (based in the west coast USA) so off to another hospital that follows a different transplant idea but of course much riskier.
I’d like to take this opportunity to THANK Chaya and PC for all the work they did on setting up CLL Topics. And how grateful I am to the Venkat clan in continuing the site after PC’s death. It has been a beacon of solid heartfelt information, but more importantly it has shown me that you have to seek out the best treatment you can and ask those difficult questions. Here’s hoping I am going to be in the 75% survival group for mini allo sibling donor transplant.
Caregiver reporting in: Still W&W for my husband (diagnosed May 2008), who is pretty much Stage 0-1 (depending on who does/doesn’t feel a node). I dove in at his diagnosis to (1) learn,(2) build a care team and network of resources, and (3) keep my sanity. I follow the “knowledge is power” mantra, but admit that I have had to “cut myself off” from the TMI (Too Much Information) impact and subsequent overload.
My husband calls me his research assistant when we go in for check ups. We can speak some of the CLL language (even the multi-syllabic drug names) and sometimes even know what they do!
Key (besides a great med team) has been (1) networking with a friend who also has CLL and taking his advice combined with (2) internet-based research, CLL Topics, CLL Forum, and (3) general geeky research reading. Without this, we would have never known of the import of having a “CLL Expert”. Thank god we learned of that because we NOW see what our local hem/onc did NOT know (but only because we learned what TO know… y’know? .
We’ve laid the groundwork and now can visit the web, etc., less frequently because we know where to go to get answers. And in just 3 years, we’ve seen how treatments change and come and go…in that short time! It’s almost perversely exciting to see all the new developments in CLL treatment.
We don’t know if what we are doing is “right” per se, but it has been right for us.
Thanks, Chaya, for contributing to our network of support… and thanks to all those out there willing to be candid about what can be very personal and difficult to share.
CherylW
Thanks to the Venkat clan for the keeping the fire burning. (I’m in remission for a couple of years now after some treatments with single agent Rituxan.
I Quit smoking 5 weeks ago after 55+ years with the habit. It’s looking like I’ll be able to quit all of my blood pressure meds…the response has been that quick.
Do any of you folks have experience with CLL and smoking?
I’ve had cll for the last 15 years. I visit my Oncologist once a year. The sun is my worst enemy. Other than that I’m OK. I am blessed with a great husband, daughter, and grand kids. Your web site is tops with beleivable info.
As always, thank you for the great informative articles.
Be well,
Monique
Chaya, Thanks to you and all that your family does and has done. I learn a lot from your articles. Some are more advanced than the stage I am at, but I will refer to all of them when the time comes. I am W&W, but like you said before, Watch and get ready for the fight of your life. Working out, eating healthy, seeing one of the best at Mayo, participating in the green tea “Project Alpha”, doing all that I can to be ready. Thanks again, my doctor recommended you to me over 5 years ago and am so glad he did! You are more appreciated than you will ever know!
Jill
Chaya,
Thank you so very much for your committment to those with CLL. Your web site has guided me through years of W&W, 6 months of CFR guided through the regimen of you know who and now I am 1+ year post Chemo treatment. I have involved myself in green tea clinical trials and now I have been told that I am in CR(complete remission), such a misnomer IMHO. So now I am in a W & W again and waiting for those dreaded numbers to bump up again. I just hope that those of us in treatment from whatever institution can help those who follow us. I realize that we are but a piece of a gargantuan puzzle that may one day be solved through efforts of those who now labor within the disease process and without.
I totally agree that CLL diagnosis is harder on the spouse and/ or family than on the victim. The unknowns are not easy, especially when the breadwinner has the disease and the spouse has the future of children and breadwinning to consider.
I can sure relate to burying the head in the sand for a few months, that is exactly what I did. It was really your website that opened up my world to This dreaded “good cancer”. I have been gently reminded to continue my donation to your worthy cause and quest for learning.
Thank you Chaya,
Mark
Hi Chaya, you are doing such a great service for us. I got to nowhere else but and my expert is Dr. Thomas Kipps at UCSD in San Diego. He is everything I ever expected and put me through my first round of FCR 18 months ago. I was newly dianosed in 2008, they found tiny nodule in my upper right lob, had to whack that out of their, still clear. After recovery, Dr kipps started thearpy when I was able to. I lasted 4 cycles, blood counts to low, but BMB reaveled no evidence of diesease, I know it I somewhere else. so I have been enjoying a long remission. Thank you for all the infor in these pages, god bless, PC was our hero. rick
Venkat and clan: I’m a newbee to this site, my local oncologist referring me to it about a month ago. I was diagnosed in 9/03; only issue had to deal with was red counts continually going down, high absolute neutraphils and currently very high absolute eosinophil’s. Due to the second issue my oncologist referred me to a GI doctor who is treating me with an antibiotic for what he thinks is an intestinal infection or possibly parasite infestation. My PCP today discerned I have a sinus, right ear, and bladder infection. So he put me an another antibiotic. I have asked the GI and PCP to have a phone conversation along with my oncologist so everyone will know what everyone is doing. Will they? It’s not sounding too hopeful. My oncologist just this week discovered I’m very anemic so Friday I get an iron transfusion! Does anyone out there have to deal with more than one doctor and if so, how do you get them to communicate regarding your health care from each of their perspectives? My PCP told me the antibiotic he put me on will not cause problems with the one my GI has me on. As a matter of fact, my PCP said he had only known of one other patient ever put on that med! So I called my GI doc and he was appalled that my PCP was ok with me on two antibiotics at once. Oh, and the phamplet of information for the antibiotic my PCP put me on says do not take iron while using this med. So, I call him back to tell him about the iron transfusion on Friday and he says it won’t be an issue! Who do I believe? Who do I trust? My other thought is about caregivers. I’m with you 100% on the importance and need for one. It would mean the world to me to have someone by my side when I go to see my oncologist, deal with treatment, feeling too yucky to cook, take care of my place, etc. However, I am completely alone on this one. Daughter and hubby live in Dallas, son, wife and grandson disowned me three months ago, but they do live in Maryland, and my sister is in NC raising her grandsons. Also, I really do not believe any of them get the fact that CLL is Cancer because up until now, my main issue has been fatigue and red cell counts, so I think they think I’m fine. What I would like to know is where does one turn when they have no family or even friends willing/able/wanting to be there for me? I’m open to anyone’s thoughts on any one of the matters I brought up. I will be at the worship on April 9!
Maria Cherie
Chaya:
Thanks again….Caregiver reporting in: Wife (dx Jun08 at 51) is doing well after 4 rounds of PCO. Just 2 more to go. Couldn’t agree more with your comment about each center having there own recommended treatment. A little concerned that even the experts do not treat the individual (at least that’s my take from Mayo in Phoenix). I did the research, I wrote the emails, I asked the questions, but until you start to go through it, you don’t know “what you don’t know”. Still believe we’re doing the right treatment for my wife, but maybe I would have rather done it in Rochester.
Thanks again for your website & information
Very interesting article, Chaya. So far, you have received Kudo’s only. I guess it is time to change that! :)
I do agree with some of your sentiments and I also disagree with some. Everyone has an agenda. We are all our own “special interest” group.
The only reason that I am involved in CLLForum is because my husband has CLL. I would imagine that CLLTopics would not be here if your husband had not had CLL. I appreciate your ability to cut through the medical jargon and explain to us which end is up! I believe that your site is of upmost importance to anyone with CLL. I and other’s mention your site continually as the place to get the best information for newbie’s, oldies and just plain understanding CLL and all of it’s intricate workings.
I also believe that you are, as we all are, our own special interest group. You like it black and white and I like to throw in red and purple. I know that you have turned up your nose at the CLLForum in the past and I wonder why. Just like CLL, everyone is different. Some people like only the newspaper for current events while other’s prefer to blog and battle it out or support and throw virtual kisses to each other. I am slightly perterbed that you continue to vent against such sites just because you don’t care for them. I believe that most people are aware that in an interactive forum environment poster’s are just telling their story. It is very helpful to hear the effects that certain drugs/treatments/transplants have on CLL. The good and the bad.
I, as my own special interest group, prefer the straight facts as presented on your site and the personal experiences of fellow CLLer’s. Together they have helped me understand all the variables of this cancer.
That’s my outsourcing and I’m sticking to it!
Jenny Lou
I certainly agree with you Chaya, that we all have to take responsiblity for researching our own treatments but when you feel lousy from being plagued for months with viruses, mouth ulcers, stomach bugs,urinary infections,fatigue you simply don’t have the energy to fight medical experts. You want someone else to ‘fight your corner for you’, as PC luckily had you. There’s also the way everyone and those close to them, deals with the threat of an incurable diagnosis. It’s so personal and can show up cracks in family and friendships that weren’t there before.This is especially true with CLL when you have to be aware of it all the time over many years.In a way,’acute’ is easier to cope with than ‘chronic’. There’s only so long that you can expect people around you to make allowances.
Here in the UK we have Maggie Cancer Centres which are built within hospital grounds and after you come out from having your physical illness dealt with in the hospital, you can drop in to the centre and have help with your emotional responses. Might just be for a chat and a cup of tea, or yoga, meditation or group talking with others who are going through cancer treatment. Every hospital should have one; it really helped me with post chemo night terrors. Our society is in denial about death and aging and it is a frightening thing to have to face alone.
Thank you for this comprehensive article. Having been through all of this with one cancer diagnosis, for breast cancer, I am always concerned with whom do you trust? Okay, so I am not comforted by the fact that each expert center has their own agenda. So who do you trust there? I did EVERYTHING ON MY OWN by gut instinct and RESEARCH AND the GRACE of God with the breast cancer 15 years ago. (surgeon told me to have a lumpectomy/radiation. I said I want a mastectomy. Then my surgeon a friend tells me months after the surgery, “If you had done what I suggested you’d be dead.” I had two breast cancers in that breast and the surgeon didn’t know it was there and got it by 1mm by accident.) Then they recommended chemo. I after 3 agonizing weeks of research said NO. I had a neutropenia for 30 years and thought it would kill me outright.
I was premenopausal, found a lancet study about oophorectomy giving the same reduction of risk, talked my husband’s partner GYN into doing it. 14 years later with the diagnosis of CLL the oncologist said, “Wow you made all the right decisions for yourself back then.” I’m thinking wow but am not comforted. I also said no to radiation. Now I realize I would have had lymphedema from that which can be life threatening. So I write all of this because I want to you to understand my trust factor is not great. And I’m totally on my own since I was my husband’s caregiver for about 5 different illnesses and he died last year.
I am watch and wait with 13q deletion I also chose to watch and wait myself without diagnosis even though I suspected this diagnosis since 2002. I waited for medicare because I was already paying pre existing condition rates. I am thankful that I have someone like you to be a patient advocate because I really don’t know whom to trust with this cll. So far I’ve said no to scans and bone marrow test and told the doctor to feel my spleen and liver already knowing they were fine. They were. My white count is climbing but I have 5 little grandchildren and my immune system is holding out so far. I don’t want to put myself in the position to kill it. So thanks for listening but my trust issues are worse than I thought when I put them down on paper. A disease killing a person and wrecking their quality of life is one thing. But “death by medicine” scares me even more
Well, I’ve been steady for the last 3 bloodworks, so I’m not freaking out yet. Still, when the Kraft Dinner starts boiling over, I’m glad that my attractive and intelligent oncologist is the head of her department. The bottom line is that there are a finite number of treatments. Unlike surgery, there is no particular “Pro from Dover” who can accomplish what others cannot. I’ve tried not to burden my friends and spouse any more than I have to with this, because, at the moment, there’s not much they can do.
I appreciate the effort you’ve done for this, and I’m trying to figure out how a non PayPal person in Canada can make contributions. Please advise! I forgot how I did it last time! :)
Jenny Lou:
I was not venting or turning up my nose. Sorry that is how it came across to you.
I do have a problem with “fake facts” going unchallenged – especially when they further confuse an already confused scenario, such as the one we face with CLL.
Should a patient sign up as regular customer at a tanning salon in order to increase her vitamin D3 levels? Surely the answer to that is obvious! Given the increased risk of skin cancer in CLL patients, I would wish that moderators or more senior members jump in with more appropriate information when faced with such comments from newly diagnosed patients.
As for camaraderie, sense of shared misfortune, emotional context, empathy, kindness of total strangers that lifts one’s spirits – the sort of things Molly Fletcher is talking about in the comment above – all of these are important and essential for giving patients a way to cope. There are several CLL patient sites out there, including your CLL Forum, which provide these and other important functions. My concern is where the lines between emotional support and medical advice are blurred, especially if the “medical advice” is plain wrong and likely to cause damage. My constant worry in running these websites is that in my desire to do good, I end up doing harm.
As for your personal choices of what works for you and your husband, I would be the first one to support you in your right to make those choices! Not everyone has to be a dyed in the wool science geek like me, and we do not require that our members forswear all other allegiances when they visit our site. Different strokes for different folks. Or a bunch of different strokes for the same folks. Whatever works.
My best wishes to you and Tom. I have enjoyed the many emails you and I exchanged over the years.
And this is how I feel many days—
“When a lot of remedies are suggested for a disease, that means it cannot be cured.” ~Anton Chekhov, The Cherry Orchard
I have also enjoyed our exchanges over the years, Chaya. You do Rock the Medical Jargon World!
Jenny Lou
Chaya – thank you for another extremely important topic article.
I’ve printed it to re-read, mark up and then come back with comments, questions.
Russell Haag – you go to UCSD. Can you share which doctor you see there and what your experience has been with him?
thekenoguy – you go to UCSD (Dr. Kipps) – (1) What has your experience been with Dr. Kipps? (2)Do you always see Dr. Kipps when you go to UCSD or do you sometimes see Dr. Castro?
Other CLL folks – have any of you gone to
1) Stanford – If yes, what has been your experience there?
2) UCSD – If yes, what has been your experience there?
Thank you Chaya & all the rest of the CLL Topics community for your caring and sharing.
Patti Kruse
Immediately after my husbands diagnosis 11q del CLL/SLL I contacted MDA and DFCI and requested information on the most successful chemo protocol and both were in agreement that FCR was the best chance for remission for 11q. We consulted with an oncologist at a local cancer treatment center. This oncologist said that FCR was unheard of outside of research teaching medical centers and she only treated with FR. Needless to say we never returned to that facility! We found a local hematologist/oncologist who agreed to work with my husbands physician at DFCI, and 2 years later began FCR. He is in remission and due to the fludarabine developed a 20q del in numbers not great enough for a MDS diagnosis but is being watched closely by his DFCI doc and local onc. Had I not done my homework and he was treated with FR alone who knows if he would be enjoying remission today. As Chaya keeps drilling into our brains do your homework, let no stone go unturned and if it doesnt sound or feel right trust your feelings!!
Chaya,
CLLTopics was the first website I found after being told by my now long-gone 1st local oncologist that I should not go on the web. I credit you with framing the dilemma of CLL, with all that there is to consider, into a knowledge base from which I could explore myself and my disease and am profoundly grateful for the template it has provided me with.
I searched out several other websites, forums and Blogs that I found valuable but I came to the conclusion that life must be lived WITH having CLL and not to the exclusion of all that is not CLL. Dr. Terry Hamblin’s generous involvement with the ACOR Listserv has kept me there and works well with his Blog. I have found the experiences of the members of ACOR and CLLforum to be very useful and humbling at times for what many are going through. The interpretation of individual postings must be filtered through one’s own level of gained knowledge and experiences, as all things in life. Bad info or misguided postings are most always caught and these instances are in and of themselves teaching moments.
The tough issue you so graphically illustrated by the 5 different expert recommendations is now my problem as I am in a diminished option position having had to abandon Rituxan due to severe Serum Sickness reaction and damaged kidney function. The process of choosing the next step is not easy and at some level when dealing with an incurable disease a person sometimes has to resort to their gut feel, both about the recommendation and the Doc giving it as much as we would want it based on hard facts.
The other hard decision for the patient is when the patient feels he or she is being ignored by the Doc. How assertive should that patient be to get the Doc to address a concern? After all, not all patient concerns are valid and not all Docs can be trusted to follow-up on legitimate or reasonable patient concerns. My own mounting concern (data reinforced by “Your Charts”) over my kidneys was not addressed or properly considered by some of the best CLL experts in the land or my local HemeOnc SCT Doc and my failure to do more than politely raise my concern has cost me dearly when my kidneys failed after TX.
So who said Life was to be easy?
WWW
For Marilyn:
Wow! What a powerful cancer narrative.
Thank you!
Sally
Chaya
Great post which gives all of us something to think about.Unfortunately the answers are, as we all know ,not always apparent.Im about to start my first treatment after 7 years of W.W.I consult with a world rated expert and a local expert.Im 75,in excellent age-relared shape, have no “B” symptoms and all my prognostic results were positive.FCR is a possibility, but my age is obviously a problem.The Docs. are impressed with my knowledge of the treatments available(thanks to studying your site)and appear open to suggestion Im cosidering B+R.Any thoughts on this combo.as a first step.
ROBERTO
Chaya,
Thank you again and again for a very informative article.
Having been told for many years that I am a realist, I am beginning to believe it.
I deal with my many health problems by dealing with them with my doctors, my research, consultants, and coming to my conclusions. My philosophy-that’s the way it is and deal with it.
My conclusions change as information updates. I do make plans which makes life easier to a certain extent. The old saying, “people plan and God laughs.” is very true at times.
I have had CLL for 17 years and will be 78 in May. I have had my share of ups and downs with chemo. etc.
Rita
I felt my husband and I had co-cancer. He was the courageous compliant receiver of FCR (not effective) and then allo Stem cell transplant. It was a too short battle of 2 years from diagnosis to losing due to an embolism. He kept up with the treadmill until the day before he died. I read the information about what we were facing, he read my face and decided he didn’t want to. He once asked how other people handle this without a staunch advocate. I think about this myself and feel I would look for a center that I could travel to more easily (We had a 2 hour Midwest commute to Chicago), and look for the whole package of a hematology specialist, CAM therapies and a support group. I would keep reading this site as well.
I am currently in my second cycle of treatments for relapse CLL, 13q deletion – diagnosis in 2008. My doctor specializes in hematology/oncology. I am actively involved in my care and think of my CLL treatments as a partnership . My doctor once told me this is a marathon, not a sprint. It is helpful for me to remember that. We also are on the same page about the importance of exercise and nutrition. I am lucky to have great social support. What works best for me is to be prepared for and plan for the future but to live life in the present. I believe it is wise to be extremely selective in what research articles I read off the internet. And as many have inferred above, this site is priceless.
I am another wife-caregiver. I found CLL Topics not long after my husband’s December 2009 diagnosis, at 46, of CLL along with AIHA, inflated WBC, liver, spleen, lymph nodes, jaundice; I knew early on that I hungered for information and had a need to understand what my guy was faced with and what I could do to help. He’s a strong guy, and after prednisone and blood transfusions, bounced back enough to start rounds of fludara and cyclo the following February. We tried to get Rituxan as well; we knew of its benefits, thanks to Chaya and the various studies this site points to and reviews. Unfortunately, even with the full support of our hematology team, we could not get Rituxan. A year later, January 2011, our province approved Rituxan- now it is available along with FC as a first line of treatment. My guy had some benefits from the FC treatments last year (got through his first bout of febrile neutropenia); within 3 months though of completing the sixth round, the counts were not good, the WBCs were climbing, the nodes were back, the platelets sitting firmly in the 20s and have stayed there since. So now, as of late Jan 2011, he is working his way through Campath, has done another bout with febrile neutropenia, and is looking towards a possible SCT. Luckily, his brother is a 9/10 match. I have great supports at work, great friends and family, a strong health care team- I guess, in a strange way, we are lucky. I have read Harveys Journal, I have shared many of Chaya’s articles, stuff from Dr. Hamblin’s blog, CLL Canada site with my guy. When we knew that the stem cell transplant was in the cards and I recently handed to him a pile of information I had gleaned, he said to me, “You are my Chaya”. High praise, which I hardly deserve- it is just that I am a librarian and we always know where to go for the best information. Thank you, Chaya.
Chaya,
Thanks for the bringing this to discussion table.
I was the caretaker and main decision maker for my husband when he was diagnosed with terminal cancer. He was extremely hypercalcemic and on very heavy chemo throughout most of the time that he battled through the disease so he wasn’t able to provide much research help. We relied upon the local oncologist to guide us through the cancer journey that we knew we weren’t going to win. I was left a widow in my early 30’s.
Fast forward 10 or so years and CLL has entered my life. Fortunately, since this is the “good cancer” (yeah, right), I have the luxury of taking the time to learn as much as possible (I must add a huge THANK YOU! for the CLL Topics and CLL Updates sites for making this a much easier task.) I’ve discovered that my local onc. really isn’t interested in making sure that I have all the information that makes me an informed patient so I’m all set with an appt. at an expert CLL center.
What amazes me is that we’re a society that demands the nitty gritty details and facts on material things we’re buying: Cell phones come with user guides that are a hundred+ pages; computers have specs on performance and websites for the operating system, etc.; food packaging lists nutrition facts and ingredients; prescription drugs come enough information to make your head spin; and it goes on and on. And if something goes wrong with one of these material items, we’re quick to contact the manufacturer. But, the same doesn’t hold true for the patient/dr relationship. In many cases, we have no clue what information is being withheld from us regarding our care. We often go along with what our doctors tell us without thinking twice about it. It’s our lives on the line yet we are seemingly so complacent.
Since I’m the only one who will be taking care of me, I have to know the facts as they are today. I can’t play ostrich with my head in the sand and wait for whatever tomorrow will bring. I don’t know what the crystal ball shows for the future but I do know that the knowledge I gain today will help me with whatever does come.
In response to Patti Kruse:
I have “auditioned” three expert centers.
First, I had three appointments at Stanford. The first seemed great, but at the second and third meetings I realized that I was being steered inappropriately toward a Campath trial. Although the center is state of the art and very luxurious, I never returned there.
Second, I was involved in two trials at “The Hutch” in Seattle. I also was treated for a very tricky pneumonia at University of Washington Medical Center with whom they are affiliated. If I lived closer, I would still be going there for all of my care.
Now my expert center is UCSF medical center. I go there once a year after three quarterly exams at my local oncologist. So far the care there has been good. The place itself is not so comfortable. It feels a little bit like assembly line care. But the medical care and advice so far has worked well for me. Sometimes I get worried that they are not as cautious as the Hutch, but who knows? Sometimes caution is not the best approach!
Chaya,
Thanks for your wonderful site. It really is invaluable for those of us trying to make sense of our CLL. I was diagnosed in 2003 and was far enough along that I had to have chemo (FCR) right away. I went into cr for approximately 4 years and now it is starting creep back up. I think I will be able to hold off for a number of years before I have to again make another decision about treatment again. By then I’m hoping something better will come along. I have been reading Dr. Dean Ornish’s book The Spectrum and am encouraged by the response people made with breast cancer and prostate cancer by following his recommendations on diet. So far I haven’t really seen or heard anything about diet and CLL. We have switched to a vegetarian diet for the most part to try and see if it helps. I have blood tests every 6 months and am hopeful it will at least slow it down. I would be very interested if you anyone else on this site has any information they could share regarding nutrition and CLL.
cliffg:
A sensible and balanced diet with plenty of fresh vegetables and fruits, low in obviously unhealthy fast food choices and junk food is good for everyone. It is good for CLL patients as well. Losing extra weight, normalizing blood sugar levels if you are over-weight and /or diabetic, reducing cholesterol levels if your’s happen to be over the top, all of these are good things to do.
But I need to state for the record: CLL is a cancer of the immune system, with chromosomal abnormalities at the root of it. You cannot cure or slow down CLL with dietary intervention. If becoming a vegetarian helps you achieve some of the other health goals I identified above, good for you. Make dietary changes for the right reasons, not wishful thinking.
I have been a life long vegetarian myself, who is also unfortunately over-weight and a diabetic – go figure. I come from India, where vegetarianism is common and the cuisine has evolved over thousands of years to accommodate vegetarians. However, I notice that people who become vegetarians later in life are not always equipped with the skill-set to be vegetarian and still eat a nutritionally balanced diet. Be careful. Last thing you want is to get stuck with some nutritional deficiency that only complicates your general health.
Like You Chaya my husband doesn’t want to talk about his CLL. I am glad your husband finally took part in his disease. He doesn’t even like me to talk about it so my support system isn’t much becuase if someone calls me and askes me how he is doing and he hears me I get the look. I ask most the questions when he goes to the doctor, and if it is one too many I get the look again.
I don’t know what I would do without this site it has meade me very aware of what I need to ask the doctor.
I need to thank you for all the help you give to us. Every time I have e-mailed you I have gotten a very supportive and informative e-mail back.
I don’t really know where to post this so I will post it here. A couple weeks ago my husband went to his demertologist just for a check up, as I told him how important it is to be checked tahnks to you, and low and behold his deremotologist for a very small spot on his cheek, it was small .8cm so he wasn’t to worries about already spreading, but he did take a biopsy it eneded up being Merkel Cell Melanoma, a very agressive type melanoma. He had it removed and tested to see if it had spread to his lymph nodes. It has, so he is facing another stumbling block. I didn’t really know what to expect and was confused as to why Merkel Cell. I e-mailed you and you responded with a very informative e-mail regarding Merkel Cell and CLL which I plan to make a copy for his Dr. Thank God for Chaya!!!
Is there anyone in Northern Utah that post here with CLL, I could use some support.
I’m a healthy 74, just diagnosed with CLL. So far no signs of CLL besides a slightly high WBC count. I’m waiting and watching, hoping for the best, maybe another ten years. Fortunately I have a very supportive loving wife who is a retired nurse, and experienced in long term caring for her father and mother. I have a question. What is the longest anyone has lasted with W&W before having treatment? Also, what is the longest anyone has lasted once treatment was started? I ask because I hope to break longevity records and then die of something else. Then again, dying from CLL might be preferable to dying from many other diseases. I’d love to hear from long-term survivors.
I noted that there was little if any reference to God in the comments section. Why is this? Are CLL patients non-religious? What if any role does intercessory prayer play in treatment? I am familiar with all the intercessory prayer studies. None done to heal CLL, but claims of healing persist in the religious community. I have no doubt prayer has a placebo effect and might help patients deal with disease. What does the CLL community have to say about intercessory prayer?
Thank you for a great site. I love your site, because you are to the point and honest.
cgosling asked how long people were in watch and wait. My mom had CLL for 11 years, then it turned to Non hodgkins, and she started treatment for NHL, which she underwent for 5 years. So she had it for 16 years. She was diagnosed at 50. I was diagnosed with CLL at 47, and have had it for 6.5 years, and have had no problems, just escalating WBC. Best wishes to you. Yes, I pray for myself and all others with cancer. And also pray for those who are researching and the physicians, that the Lord will bless them with the wisdom they need. I think we have to.
cgosling, janet:
W & W can last decades in some truly “smoldering” cases of CLL. Similarly, patients undergoing some of the modern chemoimmunotherapy regimens and getting MRD negative remissions can live a very long time without needing therapy again.
Regarding religion: please be sure to read our “terms and conditions of use“. The link is given below for your convenience:
http://updates.clltopics.org/terms-and-conditions-of-use
Not everyone is religious, not everyone believes in the same version of religion. “Updates” has members in more than a hundred countries. Along with politics, religion can become a very divisive issue and one that we stay away from on this site. I am sure there are plenty of other sites out there that cater to patients who wish to have things done otherwise.
You are of course welcome to believe whatever you wish, but when you post comments on our site we hope you respect our ground rules.
Chaya,
Great topic with lots of thought provoking issues. After being dx in 11/05, I remain in watch and learn and am comfortable there. At first i wasn’t and couldn’t believe there was not something I could do since I did have cancer. It seemed so strange!
If i develope symptoms, what will I do, what tx will I choose? My gut tells me to lst try one of the new protocols that will cause the least damage to my immune system such as one of the kinase inhibiters, if they are available. Probably combined with a MAB. I like the idea of not causing any further damage to my immune system or leaving myself open to a host of infections. But decisions come with all sorts of dilemmas we have to accept and live with.
Thanks again,
Chris R
Chaya,
Thank you for a great article. I am wife to Terry who has had dx of CLL since 2003. We credit you for the early information we received about not going automatically to treatment till warranted. Because of your sites my husband went to a CLL expert center in the first year after dx.
After W&W of 7 yrs. he was treated by a local oncologist, who is head of a large practice. He does attend conferences and has treated numerous people with CLL. He uses leading labs for genetic tests.
On Monday Terry begins his last round of FCR-Lite, customized for his genetic profile. He had 4 weeks of weekly Rituxan in Sept. He had a vigorous response to Rituxan. His blood counts have been normal since after the second cycle of FCR Lite. The only negative effect is his IGs are reduced, which you recently wrote about. He feels better than he has in years.
I hate to think what treatments he might have had with the “good cancer” local oncologist he saw first.
We thank you for these good years while we became well-informed rather than depending only on the first local oncologist. I’m sure many others can concur.
Linda
Is difficult to say what is the best article written by Chaya because all are very good. But this show why this site CLL Topics is extraordinary and useful. Here we can find an important and complete information about this disease. But also, we can find different kind of articles that obliges us to think and help us to find the best options.
It is great to see that Chaya let us know her personal concerns and talk about that important matters with sensitive -we know her love and devotion to PC – and with experience .I am the supporter of my wife and can understand when she says that is not easy.
Thank you again for this article and for your advice’s and concerns. You care with us.
Jorgs
Wladyslaw Warnenczyk,
With the recent tragedy in Japan …… more information is coming to light about radiation (routine hospital) exposures causing chromosonal changes in patients. GOOGLE Cedar Sinai Radiation ……..
Another great article.
The only thing I might add is that not only doesn’t one outsourcing strategy work for everyone, one strategy may not work for anyone all the time,
I have needed many tactics to get me through this roller coaster ride.
Mostly, I tend to be deeply, some say too deeply, involved in the minutia of my disease management, seeking multiple expert opinions when a big decision is needed from the team of CLL gurus that have helped me so much over the last 5 years. Yet when it is crunch time, I make most of the calls myself.As many know, I am a MD, but not a hematologist, but a family doc. They say the doctor who treats himself has a fool for a patient. I argue who has more skin in the game than me. Can I separate out my fears and make a cold calculated decision? Not always, but I trust myself and my research and my gut more than that of any one expert.
But at times, like the first few weeks post transplant that I was way too sick to decide chocolate or vanilla, let alone what to do next, and I handed control over to my docs, with the eyes of my wife and a dear friend and very sharp doc who beat Hogkin’s Disease watching closely.
Other times, I chose to coast. Enough with CLL. With a deep enough remission, I think it is crazy not to live for a while in denial and have the best of times, worry free. That is never easy, but family and travel and serving others are a big help for living in the moment.
And finally, there is there is the outsourcing to the world of the fantastic and the unlikely, but possible. I do things that my intellectual side say are ineffective, but give me the important sense of doing something positive- eating organic raw vegan food, drinking tons of green tea (the real stuff from Japan), taking vitamin D3, regular exercise, and Budwig supplements. It is lovely to think I am making a difference, and it is impossible to prove that I am not. Besides, as you said, I have CLL, I don’t need CAD or osteoporosis complicating therapy..
There is a high price for being the constant master of your destiny- worries and regrets, but for me most of the time the price of outsourcing my future to anyone else is much higher.
Thanks for the chance to reflect on this
Stay strong
Brian Koffman
bkoffman.blogspot.com
Thanks Chaya, So very much to think about! Sometimes it’s funny how a person gets to where they are. My med. doc the “good cancer” one sent me to onc. who did all the confirming labs and discussed w&w. I had to ask about a big shiny red bump right on my nose–yes, it was basil cell cancer and I’ve had two other types of skin cancer diag. in the past 6 mo. Was he blind? Probably Just too focused on CLL. When I asked about immunizations for Africa, he said, ” I don’t know.”
And didn’t follow it up with “but, I’ll find out” I called MDA and that same doc. told me MDA wouldn’t take me, however, I’m now Dr. Keating’s patient. He told me not to get any live virus vaccines,so NO yellow fever shots, no chicken pox shots, etc. If you plan to travel be sure to tell whoever is helping with necessary shots about your CLL or research with CDC. Instead of Kenya, we went to South Africa-Kruger national Park and had a wonderful time. Wish we had Maggie Centers in the USA Molly Fletcher. MLMG Mollie
I am getting caught up on my ‘Updates’ and was curious to check my answers on your pop-quiz. Can anyone refer me to your previous article with the answers?
I applaud ‘updates’ and its excellent moderator. Ruth
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