Not quite yet
Today the tally of swine flu cases reported and confirmed by the WHO increased to 3,440 confirmed cases in 29 countries, with 48 deaths from the sickness. Just yesterday there were 2,500 confirmed cases in 25 countries. In the United States, the total number of confirmed cases was 1,639. Today swine flu count stands at 2,254 confirmed cases and 722 probable cases in 44 states, with 104 hospitalizations. I am pretty sure all of these numbers are a significant underestimation of the real numbers, the WHO is very conservative and slow in confirming case load.
There is little doubt that this virus has learned how to travel from human to human with ease, not to mention the occasional dog leg to re-visit a swine herd in Alberta, Canada. As the map put out by the WHO shows, this virus has already spread far and wide.
At the moment the percentages of infected people who need hospitalization and eventually die of H1N1 is reassuringly low. Does that mean we can forget about this as the latest horror perpetuated on a gullible public by hyperactive news media? If you ask me, not quite yet. This virus may yet learn new tricks than can be very dangerous. Here is a quote that worried me:
Bird flu kills more than 60 percent of its human victims, but doesn’t easily pass from person to person. Swine flu can be spread with a sneeze or handshake, but kills only a small fraction of the people it infects.
So what happens if they mix? This is the scenario that has some scientists worried.
We are more at risk
The sober scientists at the WHO and CDC estimate as many as a third of the people of the world are likely to get infected with this virus before it is all over. That is many billions of people! Even with very small percentages of people actually dying from it, the deaths become horrendous when we are talking of billions of people infected.
What I find more troubling is the fact that people with prior vulnerability to pulmonary infections – such as people with asthma, COPD etc – are more likely to develop aggressive viral pneumonia if infected with the swine flu. The New York Times has a good article on the subject today.
And as I have said a million times before, CLL patients seem to be exceptionally sensitive to all sorts of pulmonary infections. Pneumonia and pulmonary infections are the single biggest cause of death in CLL patients.
The Southern Strategy
The WHO and other similar organizations are following what I call the Southern Strategy. The southern hemisphere is just entering their annual flu season. Every year the authorities monitor what is happening in Australia and New Zealand to see what they can expect by way of the annual flu six months later in the USA, Europe and rest of the northern hemisphere. This year the watching is much more intense. You might say Aussies and Kiwis are the canaries in the coal mine. Oh yes, South America and parts of Africa are there too, but they do not count since many countries there do not have adequate surveillance and reporting systems.
If the present H1N1 virus follows the pattern established in the great 1918 flu pandemic, there is a chance that this summer’s flu infections and deaths are just a mere taste of what is to come in the fall. If this virus learns new tricks as it goes through the human populations in the southern hemisphere, hang on to your hats gentlemen, we are in for a rough ride come this fall.
Anti-viral drugs and drug resistance
At this point the H1N1 is sensitive to Tamiflu and Relenza, two powerful anti-viral drugs available to treat patients who come down with the H1N1. It has already been shown to be completely resistant to amantadine and rimantadine, two older and cheaper viral medications.
I have no doubt that Australian and New Zealand patients will be covered with a blanket of Tamiflu and Relenza in order to protect them, there are no other choices. The million dollar question is this: will the virus have learned resistance to both of these drugs by the time fall time rolls around and it is flu season for folks in the northern hemisphere? The single biggest route to drug resistant viruses is heavy usage of the drugs. The more we use the drugs, the more likely the virus will learn ways to get around them. Heck, that is not news to us, we know all about developing drug resistance strains.
Vaccine to the rescue
A lot of hope is placed in timely development of an effective vaccine against the swine flu – in time that is, for the major population centers of the northern hemisphere. The South is on its own, no hope of any vaccine before they are hit in the next few weeks and months.
And how much of a help is the vaccine likely to be for CLL patients? I do not see any reason to hope that our guys will respond to this vaccine any better than they respond to any other vaccine. The percentage of CLL patients who respond adequately to the annual flu shot and therefore get some benefit from it is less than 5%.
Our hope lie in what is called “herd immunity“. If everyone around you is protected by the vaccine and therefore healthy and free of the swine flu, you can hope to escape unscathed as well. And if you are smart, you will try to improve on this by practicing good social distancing skills. Unless you are a politician looking to get re-elected, stop shaking hands with sick people and kissing all those babies with drippy noses! Here is a very useful link to the Citizen’s Guide that has a lot of very useful information (hat tip to Peter and Jane Carpenter!)
I am convinced it will be several months before we can safely declare this crisis over. I am equally sure that if indeed it becomes a full fledged and lethal pandemic, our best defense is going to be smart thinking, pre-planning and keeping brain in gear at all times. I will try my best to keep you up to date without going over the top and freaking you out. OK?
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32 comments on "Other Illness May Cause Worst Cases of Swine Flu"
I think you’ve nailed it, Chaya. Here’s hoping they come up with a vaccine ‘close enough’ to keep the thing in check for healthy people and somehow reduce the ‘pan’ part. At least by doing that, there’s hope for those of us who have little or no defensive options. In the meantime, I’m going to be thinking good thoughts. :-)
Thanks again for your timely thoughts. Best!
I liked your comment that if everyone around you is protected by the vaccine that we as patients have a better chance of staying healthy. I will pass that on to my spouse who so far has refused to get the flu shot.
I have never thought of myself as an “alarmist”, but I am now hearing many people state that this was a media hype–a scare tactic–and that more people die from the ordinary strains of influenza every year than deaths from H1N1. I worry that while WHO is doing a good job, the average person will be taken by surprise when this virus mutates and re-emerges as a stronger and perhaps deadlier opponent. The numbers of cases as of this morning are astounding, yet not on the front page anymore. I just feel a red flag flying out there flapping in the breeze and everyone has their backs turned. Thank you for keeping this on the front line.
Jenny Lou Park
Jenny Lou
I agree with you. I think most people are suffering from an “alarm overload” and choosing not to worry about another what-if scenario. I can’t say I blame them.
Nevertheless, I think CLL patients and those that care for them should watch this situation carefully. Not only are our guys more vulnerable to the infection, they are also much more reliant on the healthcare system. When (if) $hit hits the proverbial fan, will we continue to have access to all the stuff we need as CLL patients?
For those punting needed CLL therapy down the road to fall / winter time, will resources be available if the country is battling a worse than normal flu season? If you were planning to get therapy away from home, would you want to risk air travel then? Especially if the CLL therapy is going to leave you even more immune suppressed?
Tough questions. And I do not have any easy answers. The best advice seems to be to think things through and make what plans you can.
As you all know i am not an infectious disease specialist. I did, however, witness what has become a very serious “epidemic” of hospital (and now community) acquired C. diff infection which evolved over a 25 year or so period principly because appropriate hygienic measures were not taken soon enough.
The concept of herd immunity is valid.
There is some reason to suspect that patients with impaired immune systems (eg, CLL patients) may perversely be protected from the the cytokine storm which leads to severe pulmonary edema (in effect, ARDS) which can rapidly lead to death in young healthy people. (this is only CONJECTURE).
Until we see how things go we need to be vigilant with prudent preventive measures to avoid infection, encourage widespread use of a vaccine if/when available (to effect herd immunity) and be prepared to utilize Tamiflu and Relenza (which is not fun to use) if/when appropriate.
Widespread and inappropriate usage of tamiflu and Rlenza may actually be harmful as Chaya has already mentioned.
For now…wash appropriately and practice good “social distancing”. I have found the “yoga bow” to be very charming.
Rick
One of the docs at Mayo told me that while CLL patients may not show the classic symptoms of “cytokine storm” they would be incredibly more at risk of getting opportunistic bacterial pneumonia on top of the viral infection. Any bug that kills you is bad enough, whatever the name tag.
Rick, your comment about C.diff reminded me of something I just read. Unlike garden variety annual flu, a good 25-30% of people infected with swine flu exhibit vomiting and diarrhea. There is concern that unlike garden variety flu that is spread via airborn droplets, swine flu may spread by fecal route as well.
People, good hand washing after visiting the facilities is always important – now even more so.
Tcd111
I believe I almost remember piece you did some time ago. The paper, and abstract, was on immuniations and the need to do them twice and if a topicial cream was applied at stick site a much better than the 5% number was obtained.
re Ricks’s comment: “I have found the ‘yoga bow’ to be very charming.”
For a bit over a year now I have avoided shaking hands. In a social gathering I stand with my hands clasped behind my back. Amongst Asians I can do “namaste”. Among those who still extend the right hand I have become very adept at quickly extending my left hand to touch the person on the elbow of the extended right hand; touching the person, with a smile on my face, still conveys my friendliness; if need be I am now in a good position to whisper into the person’s right ear that I have medical reasons for not shaking hands. So far I have had very few problems with this approach.
Regarding the comment above alluding to the trial in the UK utilizing imiquimod to ‘boost’ the efficacy of influenza vaccination, this may be an appropriate time to ask the researchers to “break the code’ to determine if it actually works so that those who might benefit can do so in a timely fashion.
Of course, if there was no benefit, there was likely no ‘loss”, but why go on?
In this study the vaccine was given subcutaneously (a bit differently than usual) and imiquimod was applied topically to the site in the hope of stimulating dermal dendritic cells to ‘work better’ at recognizing and processing the antigen (the vaccine). Imiquimod is very expensive, but well worth the cost if it is efficacious.
11qRick:
A few months back I did ask Dr. Hamblin if any results were available of the imiquimod boost. At that time has said the experiment was still in progress. Maybe now something might be available but Dr. Hamblin is in the middle cycles of chemo himself and so indisposed so to speak.
TomD
I reached the researcher conducting the “Jab & Dab” clinical trial. As you may recall, this trial was sponsored and funded by members of CLL Topics and our partners at the UK CLL forum. Getting periodic updates on the progress of the trial was one of the few requirements we had on the researcher. That and the requirement that the results of the trial are published promptly.
I am sorry to say that the trial is not going well – in the sense that they have not been successful in recruiting the desired number of CLL patients and their non-CLL matched control group (usually the spouse of the CLL patient). After two flu seasons they are about half way there in terms of recruitment. Blood samples have been collected from the patients recruited thus far, but much of the lab work is still waiting to be done.
Is this because patients in the UK are not willing to participate? The researcher says they do not want the hassle of repeat trips to the clinic to donate blood. I found that surprising. When PC and I discussed this trial with the UK CLL Forum members we met, there was a great deal of enthusiasm for the concept. So much so that they joined us in co-funding this project. Is it the “system” that does not encourage participation? Is it for lack of passion on the part of the researcher? I had a very hard time reaching the researcher for this status update; repeated letters and phone messages went unanswered. It took close to 6 months before I got a reply back and that only when I started contacting her colleagues.
I am disillusioned, to say the least. $40,000 may sound like a lot of money from our perspective. That was the level of our funding. I am only too aware that this money was collected painfully over months and months, small donations from people who sacrificed to give that money to a worthy cause. But I suppose it is a mere drop in the bucket and not enough to get real “respect” in the research grant arena where numbers do not get a second look unless they are in the millions.
I still think “Jab & Dab” is a good idea. You can look up the details of our hypothesis on CLL Topics website by searching for that phrase in the search box at the top right hand side of the home page. But please be aware this is still only a hypothesis. We have no way of knowing whether it actually works or not unless the research is done. And it is anyone’s guess when that will be.
One of the reasons why we shut down the non-profit version of CLL Topics and got out of the funding clinical trials business has been this lack of responsiveness on part of the research community. The amount of work that went into maintaining the non-profit was just not worth it. It seems my pen (or more precisely, my laptop and this website) is a whole lot more powerful than any money we can raise. I can get a lot more impact by reviewing one of the clinical trials and calling it like I see it.
Don’t get me wrong. All those hard won dollars that patients raise by doing 5K runs, bake sales or whatever – they are quite welcome. A surprisingly honest and cynical researcher told me it is worth it because it keeps the patients busy doing something and therefore out of his hair. The money is good too, so long as we just donate it and don’t ask any questions or try to “meddle” in any way. Don’t be under the illusion that a mere few thousands of dollars gets you a seat at this very exclusive table! As one M. D. Anderson expert told me, by all means raise the money and give it to us, but don’t worry your pretty little head about it after that. It really pi$$esd me off, I can tell you.
I understand your frustration. In this instance I find it sad to imagine that such a simple idea could not be quickly tested.
I would think that antibody response would be established fairly quickly (if the vaccine with or without adjuvants works) and as influenza immunity is for but a single season (as a practicality) I would have thought that relatively few post vaccination blood tests would have been required. Perhaps the work wasn’t ‘sexy’ enough for the researchers?
Imiquimod (Aldara) is readily available, but costly. No one should use it this way without evidence that it is effective and causes few (if any) unexpected problems.
Maybe the people at Bournemouth could be “goosed” to act faster in light of the H1N1 threat.
This is one more disheartening view into the ‘otherworld’ of research medicine.
If blood work is the only follow up requirement, it seems that’s a simple enough task especially for us CLL folks. It may not even be necessary to return to the original vulture as many bloods can be transported by overnight currier. (not all)
When Chaya wrote up ‘jab and dab’ it made sense to me and to my dermatologist, who offered to do it for me. I happen to be one of the lucky folks who has Aldara on hand due to repeated SCC and also due to that have an ongoing rapport with my derm doc. My CLL doc however had similar disheartening attitude regarding this. not my job, not my study, can’t do, etc. understood … I must say that I did apply aldara to the site of my last flu shot, on my own, for whatever good it may have done.
one dose (packet) hardly can be harmful, and if there’s a chance that it can work, why not. costly, yes, for a course of treatment, but one packet if a group of patients were being treated, not too terrible. I am not aware of anyone selling single packets however as a doctor writes for a course, of say two apps a day for x days. stop, repeat, recheck etc. It’s terrible to proscribe for however with insurance companies as they always want to know the dose x days etc. almost impossible to forecast. I can tell anyone that one packet does nothing. sometimes it takes a week or more to see any reaction, even in the presence of precancerous cells.
It would be nice if doctors in the persuit of CLL help would or could help each other, particularly if they are in research hospitals with the facilities to perform blood work. If patients are willing to pariticpate in their study why not help someone else? wishful thinking? I may be naive as all getout, but seems like everyone could benefit if this were to become a reality. I do know that wiriting study protocols seems as daunting as performing the actual study. there’s all that legalese that has to be there to cover everyone’s rear and be just the right amount of obfiscatorial language to be able to say, what, you didn’t understand THAT? Or is it that the bottom line the ultimate ruler?
I have participated in several studies and all of them cover the use of information sharing, data sharing, even tissue and blood sharing, so what’s the problem?
sadly maybe we can hope that this new flu bug will get some folks thinking about us in this light?????
regarding Chaya’s hypothetical regarding planning for and or availability of distant treatments in the flu season, especially the upcoming one…. doubtful, unless driving is an option I, for one, won’t be counting on it. the newest updates from WHO on flu preparedness stress being ready to be self reliant, isolation, lack of routine health care. Aside from local mandates regarding quarantine, even the most rudimentary care may be unavailable, or inadvisable. Herd protection is probably primary which means it’s esssential for any and all close family/caregivers who are not immune comp to get vaccinated as soon as possible. (very brief synopsis of about 70 pages, much of which is repetitive but should be required reading) pretty scary, but even water may be off limits, and even deaths may have to hold at home until appropriate officials can deal with bodies. That’s the extreme, but it’s there. We as a group cannot afford to keep our heads in the sand and should of all folks be familiar with our local government plans, or doctors plans, and then realize that these may not work. They go so far as to say that a community that waits for government to intervene will suffer the worse outcomes. this advisory is meant to be taken world wide for all variants, known and unknown. Sorry if this is disturbing, but the whole advisory is even more terrifying. It would make a great horror flick tho for those so inclined.
I wish someone knew if we would experience early flu symptoms the same way as non immune comp folks.
all good thoughts. beth
Beth:
Some valuable comments and thoughts in your post.
I too would like to know if CLL patients with their screwed up immune response will exhibit the classic symptoms of flu that the rest of the population shows.
For example, a fever of 101F is considered high for the general population. But what is the normal of CLL patients and if they tend to have generally lower body temperatures to begin with, must they wait until they hit 101F before deciding to see a doctor? Once more I highly recommend having a good idea of what your normal body temperature, that way you can tell when you actually have a fever. We discussed this in the article on “Lance Armstrong effect” and hyperthermia.
I will confess I kept a couple of packs of Tamiflu in the cupboard at all times while PC was alive, ready to start him on the capsules at the first sign of trouble. Fortunately for us the new H1N1 (swine flu) seems to be very sensitive to Tamiflu.
chaya,
thanks, quite right, temp, bp, pulse, all should be second to our names in order of memory. You have tried to teach us that. I know my temp runs in the 97 deg range, so a few weeks ago when it hit 99, the receptionist scoffed, but thankfully the doc did call back. It is up to US after all. I’d personally be grabbing the tamiflu at over 101 with other flu like symptoms, but I could be wrong too. I guess it’s better safe than sorry. Best if one has a good relationship with a Primary Care provider especially in the event of a flu outbreak. But we all have to remember that if there is an announced outbreak he or she will be overwhelmed. And the last place we want to end up is some ER. I just hope we don’t have to find out how it hits us the hard way. We may, in the long run have to be self reliant. It’s just safer that way. Any help we can be to health care providers should be welcomed by them, especially in a time of great stress such as an epidemic. If not then at least we are better prepared to handle whatever comes along.
beth
It looks like CLL patients get some priority in getting limited supply of anti-viral drugs. Below is the guidance from a respected hospital:
From the Johns Hopkins Hospital Department of Hospital Epidemiology and Infection Control, Antibiotic Management Program and the Office of Emergency Management
Version Updated 5/5/2009, 12:00 EDT
Which Outpatients Should Be Treated?
Due to a limited supply of neuraminidase inhibitors, not all patients with suspected, probable or confirmed Influenza A (H1N1) should be treated. Treatment should be considered in patients who present within 48 hours of symptom onset with suspected, probable or confirmed Influenza A (H1N1) and fall into one of the risk groups below:
1. Patients with underlying conditions that increase the risk for more severe illness from influenza.
a. Chronic pulmonary conditions (asthma, emphysema, chronic bronchitis, etc.)
b. Cardiovascular disease (except hypertension)
c. End-stage renal disease
d. End-stage liver disease
e. Immunosuppression (including immunosuppression caused by medications or by HIV, active leukemia,
lymphoma, or active chemotherapy)
f.Conditions (e.g., cognitive dysfunction, spinal cord injuries, seizure disorders, or other neuromuscular
disorders) that can compromise respiratory function or the handling of respiratory secretions or that can increase the risk for aspiration
g. Pregnant women (please see section on use in pregnant patients below)
h. Diabetes Mellitus
2. Residents of nursing homes and other chronic-care facilities
3. Age greater than 65
4. Age birth to 5 years
5. Children and adolescents (aged 6 months to 18 years) who are receiving long-term aspirin therapy and who might be at risk for experiencing Reye syndrome after influenza virus infection
Rick, Chaya and others…
This is just a bit off topic, as it is not about the flu, but it is regarding infectious disease and vaccinations. I was going to address it to Chaya privately, but I think Rick and other’s opinions may be of some value as well.
As I mentioned earlier, I have been asked to participate in a study of the killed virus version of the shingles vaccine. This new Merck trial is specifically for CLL patients. They have already tried it on other immune suppressed patients (post BMT and HIV, for example) with excellent success, and they are expanding the study to include us.
I am scheduled for my first of four monthly sub-cu injections after the intial examination next Monday, but I’m beginning to have reservations.
I never had chicken pox as a kid (my mother confirms it…she and my younger sister did, but I didn’t), and, of course, never had the chicken pox vaccination. So, I apparently don’t harbor the varicella virus. According to everything I read, someone like me who has never had chicken pox can’t get shingles unless I come in close, physical contact with a patient who has it. It apparently isn’t transmitted through the air.
The results of the earlier studies of this killed virus on immune suppressed patients mentioned that NONE of the patients got shingles or chicken pox from the VACCINE, but that ~30% of the placebo group contracted it, and ~18% of the vaccinated group did! I assume that they are stating that they got it from reactivation of the virus, or contact with another infected person, and not the vaccine…but, at any rate, a larger number got the disease than the general population numbers of around 10%.
So, my hesitancy is due to the fact that I would first like to be protected (75% of the study group are getting the vaccine…only 25% the placebo) if possible, but it looks like I have a better chance of acquiring shingles if I enter the study than if I don’t…even if I have the placebo!
One fear I had has already been answered, in that I was assured that after the vaccination, they only check the blood for antibodies to see if it took, and don’t give you the live virus to see if the vaccine works!
So…what would you do? What do you think I should do?
One advantage of entering the study is if I ever get the disease, they will treat it for free! But, that doesn’t make me feel any better if I am one of those with long term nerve pain afterwords.
Harley
Hello Harley,
I don’t quite understand the data that you were given because a “killed” virus vaccine should not be infectious.
Influenza vaccine, for example, uses a killed viral vaccine. The principle risks relate to other components of the vaccine (there are people allergic to eggs who have sensitivity as it is developed in chicken eggs in most instances).
It is certainly possible that you had an asymptomatic infection with varicella virus when your sister had the chickenpox. If this was the case, it remains possible for you to develop shingles. Blood studies positive for varicella antibodies would confirm this scenario. If you are hypogammaglobulinemic as I am, it is possible that such antibodies would be below the threshold of detection.
To risk being repetitive, a positive blood test for varicella antibodies means that you are definitely at risk of shingles while a negative test, unfortunately, is not an assurance that this isn’t the case.
Because the vaccine would be a helpful piece of ammunition I do hope that you agree to enter the study, but no one can ever give anyone any guarantees.
Good luck in everything,
Rick
I am told that if you have had IVIG (intravenous immunoglobulins) therapy, you will test positive for antibodies against all the usual bugs (EBV, CMV, Herpes Zoster etc) even if you have never been exposed to the virus. You will have antibodies against these viruses for a while (antibodies present in the IVIG obtained from community donors).
By the way, there are now very specialized IVIG products containing high percentage of antibodies specifically targeted against CMV, Herpes Zoster etc for truly refractory cases. These specialized products are one step further purified products compared to “garden variety” IVIG – and very expensive.
Thanks for the replies, Rick and Chaya…
Replying to a couple of your comments, I am moderately hypogammaglobulinemic (IgG runs at 510-550).
And, Chaya…I’ve never had an IG transfusion. The lowest the IgG got was during my treatments…around 250-300 and recovered to the 500+ level very quickly after the Campath. So, I probably have only what antibodies that I developed over the years.
As far as the “killed” shingles virus vaccine, they say in the details in the information packet I received; “the study vaccine is made with the same weakened virus as Merck’s shingles vaccine…it contains only a very small amount of live, weakened virus.”
Hence, the possibility of infection.
What confuses me, is that they say that no study participant to date (from the previous two studies with this modified vaccine) got shingles from this vaccine…but then they say that a percentage of the placebo AS WELL AS the vaccinated participants did!
I agree that we should get as much ammo as possible, but I am beginning to wonder if this is just a ruse for Merck to establish a bigger market for the vaccine. With the percentage of participants coming down with shingles that is greater than the percentage of the general public…it looks to me like the vaccine may be the culprit…that doesn’t explain the higher than average level in the placebo group however.
I’ll discuss my concerns with them next Monday. The one saving grace may be the statement that those vaccinated participants that DID get shingles, was mild and had no long term pain or side effects. But 80% of the participants who had the placebo had long term pain. So, the vaccine may have helped in that respect.
Tuesday, I’ll let you all know what I do…and why!
I’d hate to be the one getting the placebo (25% of study participants), and have a 20-30% chance of getting shingles and an 80% chance of having long term side effects if I do!
Harley
Hello again, Harley:
I did some checking and learned that a lot has been published about the use of live attenuated varicella vaccines (so-called OKA vaccine) as well as some work with killed vaccines, which, heretofore were less immunogenic. (that means that they didn’t work as well in protecting people).
Dr. Koffman (who can easily be reached by email knows far more than I do about the varicella vaccine, and you may consider contacting him.
The merck product currently available (Zostavax) is clearly a so-called “live attenuated” viral vaccine and probably should be avoided by those with immunosuppression.
If you have not been receiving IVIG a serologic test that revealed antibodies to varicella at any titre would at least tell you that you are at risk for reactivation of the virus (ie, Shingles), though a negative test is no guarantee that you were free of worry.
For my part, I would suggest lifelong use of valacyclovir or the equivalent be considered. (I’m going to do it).
If the vaccine being tested is truly a killed viral vaccine I would encourage you to enroll in the trial (though there are always some risks with any vaccine) because all of us need the information being sought. I do, however, question the phrase…”it contains only a very small amount of live, weakened virus”. I smell a rat because this DOES NOT sound like a killed vaccine at all, merely a variation on the current live viral vaccine.
Do consider contacting Dr. Koffman who publishes his email address on his Blog site.
Good luck always,
Rick
Thanks, Rick…
I dropped off a note to Dr. Brian Koffman to see what he has to say.
>>I would suggest lifelong use of valacyclovir<<
I’ve been taking Valtrex for 2 years now…there is a cheaper equivalent? I could find a better use of $40 a month! The only generic alternative I know of (acyclovir) requires that you have to take four to five doses a day instead of one. Not sure how it would be prescribed for long term prophylactic use, though.
Harley
Harley…there is generic valacylovir, although it is not “dirt cheap”, it does cost less than Valtrex.
No one can ever spend another person’s money, but I have often marveled how often my patients have discontinued or never even took medications that either were already helping them or at least had great potential to do so while they seemed to have no compunction about spending money on Starbucks frappes and cappucinos, first run movies, electronic equipment, etc.
I have had very wealthy people in my community make regular stops to my office to pick up free samples of chronic medications and then stop these meds (which were working well) or ask that they be changed to an alternative medication when the price was increased by their pharmacy benefit plan.
I am often amused when the replacement doesn’t work as well and the patient who could well afford to change back (I do realize that many people DO NOT have that luxury) prefer to complain rather than to do the obvious.
Believe me…I never judge anyone, but sometimes I do shake my head in wonder.
If your circumstances make the cost of valacyclovir unreasonable, do consider using acyclovir (it’s far better than doing nothing) or contact the Leukemia-Lymphoma society to see if they can offer you assistance.
As a last resort, speak to your doctor or to a local AIDS clinic (AIDS patients use these drugs regularly and often have limited financial means), but for Heaven’s sake, please don’t just stop the drug.
Also please take no offense to the above “mini-rant”…it wasn’t directed at you, but to the audience at large.
We all must help each other, but it always must begin by helping ourselves first!
If the general sense is that I have overstepped my bounds, I do hope that Chaya will let me know!
Good luck always,
Rick
Morning, Rick..
First, Dr. Koffman did get back to me last night, but he is pretty busy at the moment and will get back to me in more detail later this week. Thanks for the suggestion.
>>Also please take no offense to the above “mini-rant”<>If the general sense is that I have overstepped my bounds, I do hope that Chaya will let me know!<<
And me too…I feel I’ve already stepped beyond the purpose of the CLL Updates in going off topic, and continuing this conversation. However, I have found in other groups I’m involved in that conversations like this can affect or influence some people and/or jog the thinking process in others and therefore have some limited value. I hope Chaya feels the same way…I do not intend to abuse this group in anyway, but feel a little guilty right now using the group for advice on a trial I’ve been asked to participate in. But where else could I find such well educated and experienced people with the same disease?
Anyway, after I hear from Dr. Koffman, and consider my choices over the weekend, I won’t leave you all in the dark, but will let you all know my decision on Tuesday…and my reasons…unless Chaya would rather we just drop this.
Harley
Johnny Eagle
Johnny Eagle
There are a lot of older Cll patients because of the nature of this problem, CLL. Most seniors will receive a $250.00 check from Uncle Sam via the Social Security System. I am asking you all to think of donating a portion of that windfall to Cll topics update to cover all the meetings and seminars that Chaya will be attending over the next several months. It is always tough to find extra funds, but this is almost as good as it gets. The web site makes it easy to donate.
Full disclosure. Chaya is not aware of any of my comments.
As a new member to the list, I’ve found the digression very helpful concerning topics that are important to my future. I had no knowledge of Valacyclovir or Acyclovir. The information may be covered on the website somewhere and I just haven’t read it as yet.
Here’s a great example. I’m a Vietnam veteran and had no idea that CLL had been added to the presumptive list — actually, I didn’t know such a list existed — until I read it on CLL Topics a couple of weeks ago. I filed a claim last Friday with my County Veteran’s Service Representative. So, wish me luck.
Regards,
Jim
Re: Dr. Rick’s comment “There is some reason to suspect that patients with impaired immune systems (eg, CLL patients) may perversely be protected from the the cytokine storm which leads to severe pulmonary edema (in effect, ARDS) which can rapidly lead to death in young healthy people. (this is only CONJECTURE).”
A few thoughts: I have been searching for some “benefit” to having this disease ever since DX. Maybe this is it.
It also brings to mind the hantavirus scare we had (have) in NM in the 1990’s. Young, healthy, athletic adults became violently ill quickly and died from respiratory failure as a result of pulmonary edema. According to the CDC, the average age was 38. At that time we wondered why the disease seemed to quickly kill those in good health. It was suggested by some epidemiologists that their more efficient respiratory function, and/or heightened immune response contributed to their deaths. So you may be on to something.
On the subject of hygiene: I prefer the fist bump. We’ve been doing that here in NM even before the President made it popular.
Doug.
I am afraid I do not agree with the “benefit” of having CLL as a protection against H1N1.
While it is true that the leading hypothesis is a “cytokine storm” unleashed by strong immune systems of young people as the major cause of death in an H1N1 pandemic, please be aware that both the CDC and WHO have cited underlying health conditions have a huge impact on mortality of H1N1. Specifically mentioned are immune compromised patients (such as those with AIDS, transplant patients, cancer patients and leukemia patients) as being at risk. So much so that these at risk groups get priority in situations where health care and drugs have to be rationed. The guidance form Johhs Hopkins is posted above as one of my comments.
The issue is not whether or not a cytokine storm is the cause of death subsequent to H1N1 exposure in the general population. I believe having CLL trumps that. The issues are (1) inability to fight off an even a low level infection because of poor immune function. I think most experts would agree that CLL patients would be at risk with a viral load that most healthy people can shake off. Our guys are more vulnerable even with a small viral load exposure (2) inability to fight off subsequent opportunistic infections – especially bacterial pneumonia.
Today the number of confirmed cases (CDC numbers) in the USA stand close to 5000, more than double the amount I reported in the article above 6 days ago. You would be well advised to take this potential crisis seriously, in my opinion. History teaches us lessons if we are willing to learn. Flu epidemics such as the drastic one in 1918 take months to build and there is often a spring blip that looks pretty mild before the major hit in the fall. We may be looking at a very bad time of it later this year, if (and it is still an “if” at this point in time) the H1N1 virus learns new tricks.
One of the worries is the recombination of H1N1 with the much more lethal H5N1 (bird flu) that has become entrenched in much of Asia. Combination of the ease of transmission of H1N1 (swine flu) with the deadliness of H5N1 is a scenario from hell.
I don’t want to panic people. But please stay smart out there.
Thanks everyone for an enlightening discussion.
I’ve been encouraging our daughter in Ohio via phone from WA through a nasty flu that wasn’t H1N1, but it still struck down a healthy 25 yr old who works as a bank teller. Tamiflu helped. Her worst symptoms were respiratory. After wiping out her sick leave I’m happy to report she’s fully recovered. I know she’ll take our advice (pleas) to get a flu shot this fall and every year. She’s also using more hand sanitizer. Funny thing is she spends more time helping drive-thru customers than with face-to-face contact. I’ve been on the bandwagon for years for our grown kids to get flu shots to protect Terry and all other immune-compromised people in the population. Both our sons are of the non-children vaccination bent after a firstborn got a respir. infection after her first shots. When someone has chickenpox in their circles they have chickenpox parties instead of immunizations. Our kids got bacterial infections with the disease, which I wouldn’t wish on anyone. Can you sense my frustration and dismay? The 2,000 mile distant living locations are often a good thing for Dad/Grandpa.
Stay well my friends.
Many, if not most of you, may not go back a topic or two to read this, but for those of you who have returned here, I am reporting my decision on the shingles vaccine trial I was asked to participate in a day earlier than I promised.
I just got off the phone with one of the members of the study group at the University of Rochester Medical Center, and we agreed that I would not attend the trial.
My main concern was that after reading the detailed information packet they gave me, they stated that even though the HEAT TREATED (not killed) vaccine had some live, but weakened, virus left in it, “there were no reports of shingles related to the vaccine” in the immune suppressed study participants (HIV and BMT).
HOWEVER, later in the packet they mention that 30% of those receiving the placebo, and 18% of those receiving the vaccine DID contract shingles! From what I know, those numbers are HIGHER than the generally accepted chances of contracting it outside the study! Especially for me, who has never had chickenpox.
I didn’t want to take a chance with contracting even a mild form of it, or with possible long term nerve pain, so I declined.
Doreen was very understanding, and didn’t try to talk me into it, so I am thankful for that…but that is really not unusual…I have found that the people at the U of R and it’s Strong Memorial Hospital, have all been very nice right from the start.
So, for the time being, I am not going to participate in that study.
Harley
Chaya,
A question I have- Suppose that someone with CLL is unfortunate and comes down with swine flu and recovers. Will we carry some immunity that may protect us from future outbreaks even if the virus mutates somewhat?
Chris Randolph
Chris:
My first and real worry wold be that CLL patients have much higher risk of getting really sick from any exposure to the H1N1 virus.
In a healthy person there is reason to believe that prior exposure to H1N1 will give some level of protection against a second exposure to the virus, even if it is somewhat mutated between the two episodes.
However, it is not at all clear that CLL patients will have a similar response. Immunological “memory” (where the immune system “remember” a virus or pathogen it has seen earlier and therefore is better prepared to fight it the next time the same bug comes around) is one of the primary function of B-cells. Guess what, B-cells in a CLL patient are not very good at doing thier job. Most of them are CLL cells, and it is not at all clear that the remaining memory cells that are supposedly healthy can still do their jobs in the presence of hordes of CLL cells gumming up the works.
I would not bet on immunological memory helping out the next time around in CLL patients.
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