I am all packed, ready to catch my flight first thing tomorrow morning, heading out to India. This is not a good time to be traveling and H1N1 is very much on my mind. You can bet I will be using alcohol gel every chance I get. Last thing I want is to arrive at my Mom’s with a load of infection.
Exchange of emails with a CLL friend has brought up an issue that I would like to share with you as well. For a change I will try to be succinct – no easy task for me!
Consider yourself warned
The projections are roughly 30% of our population is going to catch the H1N1 “swine flu” virus in the next little while. I hear many folks dismiss the risk – after all this is supposed to be a “mild” influenza virus, no big deal. Not!
First, anyone who thinks any influenza infection is a mild couple of days affair is in for a rude awakening. If you got a case of the sniffles in years gone by that lasted a couple of days, no big deal, that was not (repeat, not) influenza. That was a common cold virus. Influenza infection is a whole another beast. I know, I had a bout of it in 1957. I thought I was dying and my mom tells me I almost did. I was out for 10 days and felt very puny for couple more weeks.
OK, let us say your best laid plans to avoid catching the H1N1 virus fail and you are one of the 30% that got infected. One can only hope the virus is still sensitive to Tamiflu (swine flu developing drug resistance is very much a worry) and furthermore you are able to get hold of it within 48 hours of first symptoms. The general consensus is that treating with Tamiflu is not all that useful if you do not start the medication within 24 hours.
But how about this more scary scenario. You are a CLL patient who has had the usual amount of immune suppressive chemotherapy in recent months /years. You were not able to avoid H1N1 infection. You did not take Tamiflu within 48 hours. What is your game plan now? Do you “ride it out” because there is not a whole heck of a lot that can be done anyway, now that the Tamiflu window of opportunity has passed?
Double Trouble: influenza increases chances of bacterial infections
Plain vanilla H1N1 Influenza may be the least of your problems in this scenario. You see, even in the case of healthy people, influenza viral infection makes them much more vulnerable to opportunistic bacterial infections. You want a credible citation? Here it is, from the CDC. You can read the full article by clicking on the link.
Bacterial Pneumonia and Pandemic Influenza Planning
Abstract
Pandemic influenza planning is well under way across the globe. Antiviral drugs and vaccines have dominated the therapeutic agenda. Far less work has been conducted on stockpiling and planning for deployment of antimicrobial drugs against secondary bacterial pneumonia, a cause of substantial illness and death in previous pandemics and epidemics. In the event of a pandemic, effective antimicrobial drug measures are expected to substantially benefit public health. We address issues regarding use of antimicrobial drugs as stocks of individual agents are diminished and the role of resistance surveillance in informing such policy. Furthermore, vaccination with polysaccharide and conjugate pneumococcal vaccines is considered as part of a pandemic strategy.Most illness and death from influenza are likely to occur in developing countries, where neuraminidase inhibitors and vaccines may be neither affordable nor available; thus, compared with industrialized countries, the benefits of treating bacterial complications in developing countries may be substantially greater.“Secondary bacterial pneumonia is a common cause of death in persons with seasonal influenza; co-infections have been found with ≈25% of all influenza-related deaths”
Blunt enough for you?
Mind you, this CDC perspective is for otherwise healthy people. You, on the other hand, do not have healthy immune systems because of the underlying CLL and because of the therapies you probably have used to date to treat it (think fludarabine, cyclopphosphamide, Campath, steroids, chlorambucil – the list is long).
Pneumonia is the single biggest cause of death in CLL patients. If you catch the flu bug you need to be carefully monitored for secondary bacterial infections, especially bacterial pneumonia. And Tamiflu window having passed does not mean you can throw up your hands and indulge in fatalism. Bacterial infections can still be treated with broad spectrum and possibly intravenous antibacterial drugs.
There are no guanrantees in life, not many that you can count on. But here is one that I will bet on: being macho and attempting to ride out on your own a bout of flu coupled with deep respiratory infection will be one of the more foolish things a CLL patient can try – and live to brag about it.




41 comments on "As I head out the door…"
you Are a sweetheart!
have a cathartic – good – trip back home.
You …..do a lot for a lot of folks.
we appreciate you.
Chaya,
Thanks for the efforts and hope that you enjoy visiting family and home. Still amazed that you were so instrumental in getting the green tea project financed. Pretty amazing accomplishment! Evidence that the saying “where there’s a will, there’s a way” still has power in today’s highly political world.
Hope that you enjoy some time off and come back as energized as ever.
Leo
Last sentence: Foolish to ride it out…
If you are one of the 50 million people in America who are uninsured, this is the only realistic option.
Have a good trip Chaya!
Paul
If the $hit hits the fan in terms of high infection rates and therefore huge demand on our stretched thin medical resources, having insurance may not mean all that much.
Even now I understand non-emergency medical procedures (including heart operations!) are being postponed in some parts of UK – and we ain’t seen nothin’ yet!
One of the things I made sure for PC (especially when he was away from home) was that he always carried a valid prescription for a broad spectrum antibiotic in his wallet, something he could get filled at short notice wherever he happened to be. Not a bad precaution to take after discussing matters with your GP or oncologist.
By the way guys, India is very well connected via the internet. I do not plan to fall off the face of the earth. My mom can only take so much of my hyper companionship before she shoos me off to go do some work or something, get out of her hair. :)
Thank you, thank you, thank you. As always.
Many thanks for all your hard work. You write beautifully and it is easy to understand this complex problem with your help. Mumsie
Chaya
Fly safe & enjoy your time with your Mother! Thank you so much for the information. This fall will certainly be a scary one for us so the more that we are aware of what might happen, the better off we are.
Chaya
Because of you, Chaya, and your update on the HIB vaccine, I had mine last week. I plan for the pneumonia vaccine in Oct. and will be one of the first in line for the Flu vaccine.
I look forward to your updates.
Have a good trip.
rita
Keep your fingers crossed that there will be enough Swine Flu vaccine for the family members of us CLLer’s. The vaccine should be available by mid October. Bear in mind that we as a group will be considered a high risk and will therefore qualify for the limited supply of the vaccine. But given our lousy ability to mount an immune response it will be best for our household members to be vaccinated simultaneously. Keep the hand sanitizers readily available!
Mickey
Thanks for all your help. We are so fortunate to have you. Have a well deserved holiday. Ron.
Welcome to India. we are waiting for your arrival
swarup
Priti Saldanha
Yes, have a wonderful trip!!!
Dear Chaya, have a wonderful and healthy trip.
God Speed! When do you return?
Back home in early October. But seriously, you would not even know I was gone, I plan to stay in touch so keep those emails and comments coming!
I saw my family doc yesterday and asked him about this. He said there is no vaccine for this stuff and that the pneumonia vaccination I had in Jan 2007 meant that I did not need another now. He said that you can only have two pneumonia vaccinations in your lifetime, or they will cease to be effective.
I’m planning on getting some Tamiflu.
My doc has already given me a script for an antibiotic.
It’s really nice to have Chaya around to keep us on our toes.
Chaya – I had influenza this spring (not H1N1) and my PCP told me he could prescribe Tamiflu (lucky me, I fit the rationing qualification as a CLLer) or I could go to our local health food store and buy some Elderberry extract and take 1 tsp 3 times a day. The extract, like Tamiflu, must be started within 48 hours of the onset of symptoms. My PCP told me that scientific studies done in Israel had proven the extract to be even more effective than Tamiflu – with a shorter recovery time.
I know it sounds hokey – but within 4 days I was up and around with no temperature. I was pretty impressed.
http://www.Israel21c.org has an interesting article regarding elderberry extract. I didn’t include the entire address – the site has a search – should be able to find the article that way. If not, let me know and I’ll email you the link.
I believe it (the extract) is worth taking a look at.
Incidentally, it was much cheaper as well.
Lillian
Chaya, you are so fortunate to still have your mom…so enjoy your visit, and thanks so much for all your good words and help!
Betsy
Chaya,
Thank you once again for all the information you so generously feed us. This is very important. On Monday I will call my oncologist office too and ask for a broad spectrum antibiotic script that I can fill if I need it. My husband and I are traveling to Kentucky in early September to do a little spelunking at Mammoth cave. I plan on being very careful around people and places.Taking my antibacterial gel and wipes with me. I usually wipe everything down in the motel rooms before I touch anything. Will be taking latex gloves with me and masks. I am becoming anal about all of this but I want to make certain we can stay flu free as much as possible.
Enjoy your much needed trip and hopefully a bit restful for you. It is good to have parents to still visit. I miss mine.
God Bless,
Anita
Chaya…have a wonderful trip.
From the CDC abstract cited above there is a mention of “polysaccaride vaccination”. As I noted in the green tea commentary, my wbc is steady at 18k but the ALC is way down with the percentage @ 24 (normal). The tea may be one thing but I have been taking, for four years, a proprietary blend of STABILIZED aloe vera gel POLYSACCARIDES. Any further clarification from you (or others here) on that CDC notation as it would relate to what I have been doing would be appreciated. Perhaps “DR. Rick”?
Thanks,
Jim L
MJH Have a wonderful trip. I so appreciate all the information. I am getting ready for a mini-stem cell transplant in Seattle this fall sometime. I am on compath right now so you know what my immune system is. Thank you again. Myrna The comments from other CLL patients also help.
For Jim L,
The ‘polysaccharide vaccine’ referred to in the article is the Pneumovax vaccine (recommended for adults). The so-called conjugated pneumococcal vaccine used in children was also recommended in the full article.
There is no evidence that either aloe vera nor any tea that I am familiar with confers benefits against pneumococcal infection, which is the principle (but not the only) type of bacterial infection (mainly pneumonia) noted to complicate influenza infection.
All CLL patients should consider being immunized against pneumococcus (even though the vaccine may not work well in CLL patients) as well as taking any available influenza vaccines. The use of Tamiflu should be discussed with your physicians as should the use of antibiotics early on when/if an acute respiratory illness develops. No one should use these drugs without first discussing their use with their own physicians as there may be complicating factors in individual cases which influence what, how and when drugs should be employed.
Words can not express my appreciation for your great work!!! Have a great trip, rest and come back recharged to enlighten those of us who have the misfortune to be saddled with CLL. Doug
Yes – it is hard to put into words the deep gratitude I feel for this site and all the good energy that is channeled and communicated through Chaya’s efforts.
H1N1 is on my mind too. I had the chemo in 2008 and finished October. But now I have a second disease named sarcoidosis (T cell involvement with this disease) and currently getting tested to find out how much damage that disease has done to lungs, heart, eyes and skin. I’m on 20 mg prednisone/day.
Still waiting to learn if I can accept vaccines for H1N1 and get flu shots while on prednisone. I do plan to stay fully suppied with hand sanitizer, continue to eat organic diet, exercise, and get my rest. I’ll see my oncologist Tuesday and plan to ask about the sarcoidosis, prednisone and H1N1 and flu vaccinations. Things sure get complicated quickly with CLL.
Judy
Dear Chaya,
Again, thanks so much for your continuing incredible support for those of us with CLL/SLL.
Hope you have a wonderful time in India and have time for yourself and your family.
Murre
Dear Chaya,
So glad to hear that your trip to India will not be a “vacation” from CLL Topics. Wishing you a healthy and pleasurable time!
A few concerns.. about the vaccine- I understand the flu vaccine that they will be offering in the fall is made up of live viruses. I am wondering whether it will be “safe” for immune compromised folks. Balance that against those of us who are 50+- as most CLL people are- perhaps we already carry immunity from the 50s?
Secondly, I tried to get a prescription for Tamiflu and was told that doctors could not give them prophylactically. Does anyone know of a way to procure a prescription since when sick time is of the essence?
EZ
Dear Chaya,
Just wanted to share with other folks that my husband who was diagnosed with CLL about two years ago had his counts rising slowly. His last count was at about 68k, I was a little concerned, since he was complaining about being tired. I read the article about Green tea in the journal of oncology. So, I discussed it with my husband’s oncologist and had him taking green tea extract. After about 1 month on it, my husband’s wbc counts are down by 40%. Cannot think of anything else that could have done it. I have now read all the other articles on green tea availability etc, and its impact on AST levels, elsewhere and on your web-site. Being an immunologist and an active researcher in the field of lymphocytes, I am amazed to see the effect of alternative medicine.
Your site is informative, keep up the good work…have a great time in India.
U
Hi Chaya
Just joined your group and must say it has been a good read.
I’m a ‘fresher’ with a degree in CLL, so to speak, and will be on this journey with everyone to share, learn and grow as we travel down this dusty track.
If you haven’t gathered by now, I’m Australian and a Cricket tragic, which I‘m sure you understand. \
We also have a son and his family living in Chicago, so have the best of both worlds.
Our first lesson has been the ‘green tea’ and its benefits – my American ‘daughter-in-law’ has access to this, in the form you advised, from Canada and is arranging a shipment for me. We have five sons and 3 of the best daughter-in-laws we could wish for, and my wife is one of their best friends as well – that works.
Look forward to further chats.
Travel safe.
Kind Regards
Sydneydutch
As is often the case, a lot of misinformation tends to be passed around the internet…much the same way that real viruses are inadvertently spread.
The influenza vaccines are NOT live viral vaccines, except for the seasonal influenza vaccines given intranasally. I don’t think that any work is being done to develop such intranasal vaccines for the so-called swine flu.
Receiving standard injectable vaccine does carry some risk (such as Guillan barre syndrome). Some work is being done to utilize incomplete virions as antigens because the current techniques require that virus be grown in eggs or cell cultures and this has always been time consuming and expensive.
There will always be some risk in receiving any vaccine, but there is no risk of contracting flu from the standard injectable vaccine which utilizes killed virus as the antigen as well as ‘adjuvants’ to boost the immune response.
As for Tamiflu, my best advice would be to carefully discuss it’s proper use with your physician and ask for a prescription to have the drug available for use WHEN/IF indicated. Many people will likely have to pay out of pocket for the prescription if they wish to have this additional layer of protection.
One of my personal fears is that many people will take Tamiflu at the first hint of any trouble (when it isn’t needed) simultaneously reducing the available supply of the drug and increasing the likelihood of viral resistence to the drug developing. People don’t realize that there was a time when a few simple antibiotics were effective against most of the pathogenic bacteria that were encountered. This is no longer the case.
Along these same lines a discussion about broad spectrum antibiotics and a prescription for same (so long as they are not used haphazardly) is also appropriate.
Remember, condoms work to prevent STDs and pregnancy only when employed during the sex act…they don’t do any good if a person just wears them all of the time.
Good luck to all,
Rick
Have a great trip and tell your Mom that we all think she is wonderful for sharing you with us. I know she needs you, as all of us do.
Safe journey,
Betty
Hi Chaya
CLL for 5 years & many chemos and 2 lung cancer surgeries. Went to visit my daughters in Florida last april, 3 E.R. visits and have been sick ever since. Multitude of different symptoms, Dr’s had a hard time until my Oncologist finally checked my sputum, guess what,a bacterial infection, now on the right anti-biotic the 5th one. Feeling much better now. I fight cll every day and I think i’m winning the battle.
But these seconday infections are very serious, make sure you get medical attention soon enough. Take care have a nice trip. Nancy
Hi Chaya,
I, too, want to express my deepest appreciation for all that you do! One of my biggest frustrations is that I have questions, which answers seem obvious after the fact, but, well its not always easy to find the information I am looking for, recognize that it is the answer, and interpret it confidently. I am really thankful for the help you have given me. I don’t have CLL myself, my husband does. Unfortunately, I get anxious, and just more anxious when I can’t find a “reasonable” answer that I feel confident about….
Anyway, I am praying for you to have a safe and happy journey (both going and coming back!) and a wonderful time with your mom. I hope it is a time of further healing and restoration for you.
Maryann
One question that I am interested in finding information on is how a splenectomy affects the progression of the disease, or if it has no effect on disease progression.
My husband was in a “very advanced” stage iv when diagnosed 5 years ago; the entire thing was very shocking. Since then, he has had two chemos (FCR and PCR), and splenectomy after the PCR. He has taken monthly IVIG for the entire time (IVIG will continue indefinitely). His blood counts have been in the normal range for the past two years and, for the last 5 months, have been slowly creeping up again.
He was recently diagnosed with type II diabetes, so steroids have been stopped (he was getting steroids monthly with the IVIG and also when he had chemo). I assume that makes the IVIG a little effective?? and may also affect the effectiveness of chemo??
So, even though nothing is going on right now, except the IVIG, questions like these are starting to roam around in my mind.
I would appreciate suggestions for research on this site, as well as any other sites that may have these kinds of information.
Thank you so much!!
Maryann (yes, I am the nervous wife :) )
Maryann….splenectomy has no effect on the progression of CLL per se, but may be helpful in patients with autoimmune cytopenias (hemolytic anemia and/or thrombocytopenia).
In some lymphoproliferative disorders (eg, hairy cell leukemia) splenectomy may actually slow the progression dramatically.
I hope that this helps,
Rick
Thank you, Rick, so much for caring and sending your information. It really does help. My husband had the splenectony because after the PCR (which he could only take at 80%) his spleen was approx 10x the normal size and his platelet count was really low because of the spleen. The platelet problem was solved by the surgery, but because the spleen is part of the immune system I didn’t really know if its absence was really that much of an issue, except he has to be more careful about sickness. The “watch and wait” period is a good time because there isn’t any chemo treatment going on (just the IVIG) but its also, as you know, a kind of scary time because hidden things are going on inside the body, and they can bring nasty surprises,such as the initial bout my husband had when it seemed like he could die before he got well. I think I am still gun-shy from that experience. Thank you for your patience!
Maryann
Satnam, Chaya..
janeen
BeverlyW
Why don’t CLL patients carry Tamiflu and antibiotics with them? Why just a prescription? We have carried with us these medications wherever we travel since shortly after my husband was diagnosed with CLL in 2004. Having an antibiotic with us saved us a very serious problem when my husband developed a high fever when we were camping. We were a number of miles from any major city. It was 116 outside and we had 2 dogs with us. He immediately started on one of the antibiotics we had with us. Within 12 hours his fever was down and we could continue home. We saw his hematologist the next day. She complemented us for doing the right thing as well as having prevented progression to a more serious problem.
This may sound like a dumb question but as a CLL “newbie” (diagnosed in Jan 09) at what point does our immune system become compromised (i.e. in terms of lymph and WBC counts?)
Thanks for doing such a great job you are literally a life saver!
Naddude:
There is no firm deadline after diagnosis of CLL that your immune system becomes less than effective. Each individual is unique in how he/she fares after CLL diagnosis.
In gemeral, low neutrophil counts, low T-cell counts, low immunoglobulin levels point to immune dysfunction. Any one who has been through treatment for their CLL can expect to have certain deficits when it comes to immune function.
Even in my pre-CLL days, I had to worry about flu and pneumonia because my spleen was removed and it is notably a good thing to have when fighting pneumonia bacteria. So I have always had the pneumovax and flu shots and no flu now for over 30 years. I have carried levoquin with me in case of fever and pre-cll it came in handy twice when I got rather high fevers. (allergic to pennicillen and sulfa drugs, alas) I have this year started toting around Tamiflu as well, since I finished 6 rounds of FCR in April. I think having an arsenal with you as we face this flu season is a great idea.
Dear Chaya,
My sister and I are considering heading out to CA to see my brother, Ron. He’s not doing well. And after nearly three years of no visits, we just don’t want to wait any longer.
After reading this post, though, I now wonder if we may be putting our brother at risk of H1N1 by flying out to see him. It seems aircraft are like big flying germs! We’ve also considered driving out.
At the same time we want so badly to see our brother, we certainly don’t want to risk bringing a virus that could be a killer to him. What are your thoughts?
Best,
Tracey
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