Looking Into a Murky Crystal Ball
The CDC has just published the status of flu in the USA, as of Sept 12, 2009. The horizontal axis is weeks (1 – 52) and the vertical is national case load (% of visits for flu reported by US surveillance network of doctors).
As you can see from the color coded chart above (Red, this season. Green, last season. Blue, the season before last) this year was no different from the last two up until about week 15-16. It followed the usual pattern until then, a little blip over Christmas and then the surge in cases over the peak months of January through March. In normal years the case load for influenza goes away after April, as you can see from the tame blue and green lines, until it raises its ugly head again over the next winter.
Not so this year. There was a little spike towards the end of April, just about when most of us first heard of H1N1 Swine Flu for the first time. This initial small wave quickly dissipated and along with it our interest in learning more about a possible pandemic. I got emails from members irritated with me for continuing to write about a “non-event”.
Well, history teaches us that pandemics come in waves. That little spike towards the end of April was just a preamble. Look at the red line now. At a time of the year when there should be next to zero flu cases, we are already well over the levels expected during normal peak influenza season of January – March. I have little reason to expect this ominous trend will die down any time soon. We are in for a rough ride folks. This particular version of influenza may not kill as many people as the 1918 Spanish flu did (we hope), but it will surely make a lot of people quite ill. For immune compromised people like us that presents a big challenge.
How are things in your neck of the woods? The CDC updates the map of USA each week with the status. Here is how the map looked by September 12. Twenty one states are already at the highest level (“Widespread”, dark brown color), at a time when there should be none at this stage. Many communities registered a surge in flu cases as their local school systems opened for business after the summer holidays – not a coincidence. Schools are a very good way of spreading germs throughout the community, as most of us can imagine.
The good news about H1N1 swine flu
There is good news, and I want to be sure you hear it.
For starters, while this particular virus seems to be very good at spreading itself around (highly infectious), the number of people dying from it is still relatively low (low mortality) – at this stage. Of course, no one has a crystal ball to predict how that may or may not change over time. Most people who are infected with the virus get sick for a few days (but continue to infect others for a lot longer! Cover those coughs!); a small percentage get really sick and need hospitalization and special care; a further small percentage of the hospitalized cases deteriorate alarmingly fast and die, usually from pneumonia and multi organ failure. In many instances, death is due to opportunistic bacterial infections that kill the patient already weakened by H1N1. Bacterial pneumonia is a frequent cause of death in hospitalized H1N1 patients.
No one has any solid statistics on how immune compromised cancer patients fare in this scenario. There is ample evidence that people with pre-existing conditions such as late term pregnancy, asthma, lung disease, cardiac disease, diabetes etc fare a lot worse and have substantially higher death rates. I am guessing that CLL is not a good thing to have either in this context, not an unreasonable extrapolation you will agree. You party animals you, try not to get pregnant in the near future, OK?
The other bit of good news is that while there have been scattered reports of one or two patients who were refractory to Tamiflu (Oseltamivir), so far this virus has remained sensitive to Tamiflu. Let us hope it stays that way. The next line of defense is Relanza (Zanamivir), generally administered as a mist. (There have been one or two very interesting reports of Relenza given intravenously in extremely ill patients who then got better very quickly). Both Tamiflu and Relenza are anti-viral drugs. Please do not confuse them with a vaccine, a totally different thing altogether.
Physicians strongly discourage use of either of these anti-viral drugs as a prophylactic measure to prevent catching the flu. Makes sense, we are in this for the long haul and it is not possible to take Tamiflu for weeks and months. That is a good way to develop drug resistance and in any case it will add to the already big headache of drug shortages. It has become clear that taking Tamiflu soon after onset of symptoms is a whole lot more effective than taking it several days after.
H1N1 Swine flu vaccine
There is a lot of confusion swirling around the H1N1 swine flu vaccine. I will attempt to clarify some of the points.
The good news is that a single shot of swine flu vaccine protected healthy adults within eight to 10 days, according to a U.S. study. That doubles anticipated stockpiles and may help people get immunized faster. The concern earlier this summer was that the flu shot would have to be given twice to get a decent level of protection. Not so, it seems.
The bad news is that the rate at which vaccine can be manufactured has turned out to be a lot slower than we hoped. Most vaccine manufacturers use the old fashioned chicken egg approach to make vaccines and this is a slow process. There is no way we can make enough vaccine to protect everyone before the next big wave, even in wealthy countries. There will be prioritization, with different risk groups getting access to the vaccine at different times. Epidemiologists expect the peak to come as early as next month, long before enough vaccine to protect all 159 million Americans considered “at risk”. Pregnant women, children, young adults and people with chronic lung or heart disease or diabetes, health care workers and emergency medical personnel are among the priority groups.
For a change, grandma and grandpa are not top of the list for influenza this season. That does not mean they get out of jail free, it just means there are others who are more at risk this year and need to be protected first. Remember this “W” shaped graph from the 1918 Spanish flu pandemic? we discussed it in an earlier article titled “Lessons from History“. Older people died, as they always do during the flu season. The news is that a disproportionately high percentage of young people died too.
Should you get the H1N1 flu vaccine?
As always, chances are that CLL patients will not mount much of an immune response to this or the garden variety annual flu shot. In other words, even if you get high priority and are among the first people to get vaccinated, chances are not very good that you will be protected against infection. Strategies such as getting double shots of the same vaccine may not be possible this year, what with the shortage of available vaccine. Let me emphasize the “Jab & Dab” protocol we sponsored as a clinical trial is only an experimental approach, unproven as of now.
What to do? Get the vaccine shots, both for garden variety annual flu and the special H1N1 Swine flu vaccine, for whatever small benefit it may have for you, even with the CLL. But be even more sure to get each member of your family vaccinated as well. Your best protection lies in herd immunity.If you are surrounded by people who are not infected, you wills stay uninfected as well. Please use commonsense and prudence in your social interactions. Your grand kids are likely to be the biggest chink in your armor. Please consider expressing your love for the cute little germ factories this year by getting them a few more coveted toys and gifts, a few less hugs and sloppy kisses.
What about fears of the safety of the vaccine? These have been blown out of proportion by a mile in the lay press and on the gossip circuit. Getting vaccinated is a thousand times safer than getting sick with the flu. all Please do your families and yourselves a favor, encourage everyone to get vaccinated as soon as possible, both with the annual flu shot as well as the H1N1 vaccine shot.
Vaccine availability
The Food and Drug Administration has approved four H1N1 flu vaccines for national distribution. The vaccines are made by CSL Ltd., Diagnostics Ltd., Novartis Vaccines and MedImmune LLC. Three are injectable vaccines and one is a nasal spray. The FDA expects initial lots to be available in the next four weeks, with 40-45 million doses available by mid to late October. Based on preliminary data from clinical studies, a single dose of the vaccines induces a robust immune response within 8-10 days in most healthy adults. Studies are still underway to determine optimal dosing for children. The H1N1 vaccines will not protect against seasonal flu, which needs a separate vaccine, FDA noted. You need to get the regular flu shot for annual flu as well as another shot to protect against this H1N1 swine flu.
Health officials expect more than 3 million doses of H1N1 flu vaccine to be available in the first week of October. “3.4 million doses of vaccines will be available,” said Dr. Jay Butler, who heads the 2009 H1N1 Vaccine Task Force at the Centers for Disease Control and Prevention. “All of that vaccine is the inhalable vaccine.” This form of vaccine is marketed in the United States as FluMist and is approved only for healthy individuals between the ages of 2 and 49. Pregnant women are not allowed to get this type of vaccine because it contains a live virus. While they did not specifically mention CLL patients, I expect “FluMist” is not appropriate for us chickens either – because it contains a live virus. You need to wait a couple of weeks more until the regular injectable vaccine shots become available (targeted for end of October). Is it safe to be around people who have had FluMist? Good question, I do not know the answer to that. If any of you had guidance on that question from your doctors, do speak up and let us know.
View from a crowded country
As some of you know, I have extended my visit to India for several months more. It gives me a chance to see how things work during a health crisis in a crowded and poor country. Some of what I observe here will happen in the USA too, it is just a matter of time. Human nature is pretty much the same the world over.
A recent report in one of the local newspapers was about an enterprising young man collecting discarded (infected?) face masks from the waste bins in and around hospitals and recycling them. He was doing brisk business and raking in the rupees as panicked citizens were only too happy to buy what they thought was “protection”. It will never happen in the USA or Europe, you say? I beg to differ. Over the last seven years I have heard some pretty hard to believe stories about snake oil salesmen making lots of money, exploiting the fear and insecurity of people facing deadly diseases. Have you heard of the “coral calcium” story a few years ago? Huge swaths of precious coral reefs were destroyed feeding this craze in USA. Calcium from coral reefs is no better for you than the simple calcium tablets you can buy at the nearest drug store for just a few pennies. Often it can be significantly worse for you since it may have high levels of heavy metal contamination due to pollution of coastal seas.
Another local report underlined a huge problem all of us will face, sooner or later. The capital city of the state where I now live is called Hyderabad. Even at this early stage the hospitals and other health-care resources are stretched to breaking capacity. Extremely ill patients are being shunted from one hospital to the next as they run out of capacity. Several patients died because they could not be admitted anywhere soon enough to be of help. ICU beds are in very short supply, as are ventilators to help patients struggling with pneumonia. Hospital staff (doctors and nurses) are falling sick themselves, further limiting health-care. This is in the state capital. You can imagine the status in more remote areas and poorer neighborhoods.
How long before we run into the same problem in the developed countries? Sooner than you think. We have perfected the art of cutting costs and maximizing short term profits, with the result there is little surge capacity in any of our hospitals. I am willing to bet dollars to donuts we too will run into capacity problems before long. What happens to the heart attack victim when ambulances have to travel hundreds of miles before they can find an ER room able to accept them or an ICU bed that is vacant? Non-emergency care will be bumped down the queue as our system tries to cope with a huge surge of demand from H1N1 patients. Where does that leave chronically ill people like CLL patients who need to depend on medical intervention on a regular basis? Sobering thoughts worth discussing, you think?
51 comments on "Pandemic H1N1 Swine Flu: Status Report"
Chaya,
Thanks as always for an in depth report. I’ve learned so much from your newletters since being diagnosed.
There seems to be some discussion if this is a “live” vaccine. And that there are four different types? Any light you can shed on this would be greatly appreciated by all, I’m sure. Even various specialists seem to have given different advice.
As you may have noticed, there is quite a spirited debate going on within the CLL list and I expect the same on the CLL Forum, although I need to check the latest postings there.
Best to you,
Jennifer
An Australian perspective, we have just been through our winter ‘flu season.
H1N1 caused a great strain on intensive care facilities, the unusual thing was that this ‘flu killed healty young people for some unknown reason.
Australia is in a fortunate position of having a small population and CSL is one of the labs producing the vaccine.
It has been approved here and immunisation will begin on 30th of Sept. Our Govt. has ordered 21 million doses of the vaccine, 7 million of these have already been shipped.
The vaccine will be available to anyone, over the age of 10 who requests it. Our Govt. expects 90% of the population will be vaccinated on a voluntary basis.
Australia will also donate 2.1 million doses of the vaccine to PNG, East Timor and Pacific Islands.
Thank you again for your continued updates-you are truly one of our guardian angels.
Brian
thanks – always good and timely information for “us” cll’ers, espeically with immune issues.
BOCABOB
I’m gonna tell my five grand children that aunt Chaya says you must have your flu shots, and when they ask me who is aunt Chaya? I’ll tell them that aunt Chaya helps to keep Grandpa from getting sick again. As usual you are more informative than my doctor. All the best,Bob
Chaya
As always thank you so much for your in depth report about the H1N1. I am making the assumption that CLL patients need to stay away from the live vaccine, just as for any other live vaccine. I would assume that it sheds as well. I have contacted the CDC to ask questions, but all that I get is a person finding the information on their web site, not someone who can actually answer a question such as the one above.
Both you & your Mom stay well & I still believe that social distancing is one big help for all of us CLL patients. FYI, I just heard that it was documented that a person flying from Spain to Israel contracted the H1N1 from someone else on the flight. Flying is not a good thing for us to do either.
Anne
Thanks Chaya for all your interesting information which I always carefully read with great interest.
I do have one question you might know and uptil now nobody has asked that question. HOW CAN YOU KNOW if you have the seasonal flu or H1N1 and should you also start with tamiflu for just the seasonal?
If you are unlucky you could get sick with both flu”s. Hope you are enjoying your time in India.
Warm regards from Texas and Kit
kitdanmark:
That is an easy question to answer. Everything we have seen thus far has confirmed that the H1N1 virus is the dominant form this flu season. Both it and majority of the garden variety annual flu virusus we can expect this year are sensitive to Tamiflu. So, if you get the flu, never mind what variety, get started on Tamiflu right away.
The practical issue is going to be getting hold of the doctor to write the prescription if things get really hectic down the road. If you can persuade your doctor to give you a valid prescription to keep in your wallet for when / if you actually need the Tamiflu, that would be a great load off your mind.
Chaya, my gp doctor does NOT want me to get the swine flu vaccine as he says they are in too much of a hurry getting it produced, and he, being older, remembers the problems with another version of a flu vaccine causing Guerlain Barre syndrome.
My oncologist is still not sure, but is trying to stay updated with her “infectious disease” colleague.
Now, I don’t know what to do. Hibernate until next Spring?
janejs
Chaya
Thanks again for your timely updates.
I have had my Hib, thanks to your information, my pneumonia, which was due, my seasonal flu shot and as soon as it is available here, I’ll get the H1N1.
Thanks again
rita
janejs:
I am sorry to say I do NOT agree with your GP’s advice. I agree with the article in the BMJ I quoted, getting the vaccine is a thousand times safer than risk getting the swine flu. Here is the link again to the BMJ article:
http://www.bmj.com/cgi/content/full/339/sep16_2/b3802?q=g_pandemic_flu_all
But your GP has the magic “MD” letters after his name, I do not. However, many serious virologists and physicians as well as the CDC are also recommending that people get the swine flu shot. The final decision rests with you of course.
I agree with others: more information here than talking with my oncologist. On my way to get a seasonal flu shot, as per your advice!
Watching & Waiting in MN
WillB425
Chaya,
Good info. Your mention of also getting a regular flu shot in addition to H1N1 is sometimes overlooked with the H1N1 emphasis.
Good work lady…keep cookin’.
William
Thank you Again Chaya for your advice. I have been encouraging my adult children to get the flu shots (both) I think most will. Schools are giving them to the children for free. My son and family refuse to get flu shots of any kind because they say it lessons their natural immunity….an it detrimental to their health now and in the future. What can I say to these guys to change their minds when they are so intent that they are right? They have two children that are home schooled but are of course around other home schooled children in different group settings as well as sports. Would be nice to spend Christmas in a ‘protected herd’ ……any thoughts?
Didn’t know you were spending extra time in India….but as i said before spending time with your Mom is so important for you both.
Take good care of yourself
Darlene
Chaya,
Thanks for the timely update and the BMJ reference. As always, I really appreciate your advice and hard work. It means a great deal to all of us CLL’s. You have a gift for making complex issues easy to understand.
Thanks,
John
I was told by my doctors at NIH not to get the H1N1 flu shot because it contained live virus. From reading your article I gather only the mist contains live virus. Can you clarify this?
Lakesmith:
Only the “FluMist” has live virus. Not the injectable variety that will be available later in the year. I assume the NIH doctors were talking about FluMist. Here is a quote for the FDA flu site:
“There are two kinds of influenza vaccines: one type is an injection or shot in the arm and the other type is administered into the nose with a nasal sprayer. The shot contains inactivated (killed) influenza viruses, and the nasal vaccine contains live viruses that are weakened.”
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm100139.htm#About2009H1N1Influenza
Thank you, thank you , thank you, as always.
You responded to one of the posts about, but did not answer the part of their question that concerns me too. How do I know I have influenza, of either type? It appears that I need to figure that out early if Tamiflu is to be of maximum benefit. (I have been sick the past week and none of my doctors seem to think it more than a cold. It has delayed my getting the flu and pneumonia shots,) And enjoy the Deccan. I expect you are enjoying the food, the language, etc. I went to (my second) grad school with a woman from Hyderabad. Thanks again.
Steve
I am more worried about mercury levels right now than the flu. While I have CLL, I have not been sick a day since diagnosis 4 years ago. I am fanatic about eating organic particularly since my best friend was found to have high levels of mercury and radiation in her system. I do not want to go through what she has gone through the last year just to find out she needs to detox. I will pass this year on flu shots until they find an alternative delivery that does not contain mercury.
Chaya,
I too am extremely grateful for your continuous information “gifting”. Having just finished approx 6 months of chemo (RFC), I am somewhat immune-compromised, with white counts pretty low, granulocytes at 1.0, very slowly coming up. I am recovering from a “persistent cold” with a 7-day Rx of levaquin. When I asked my oncologist, who I am very impressed with, about flu shots on the heels of chemo, his reply was “my B-cells will probably not wake up for several months and it will probably not give me much immunity, but will probably not hurt either”. I am sure my wife and daughter will get flu shots for their own sake and for the “herd immunity” protection it gives me. I am going to go for the flu shot also.
btw, my oncologist has also set up a visit to Johns Hopkins for a consult on my current options. Although I have been lucky enough to have a less aggressive CLL than many, and have enjoyed 2 nice, long (3-year) remissions after my 1st and 2nd chemos, this time is slightly different. My bone marrow still shows approx 12% CLL cell involvement – last time after chemo, it looked “clean”. Otherwise, latest CT scan looked pretty good regarding lymphadenopathy and organs, and cytogenetics labs did not reveal any “uglies”. Interestingly enough, the Trisomy-12 that was detected on an earlier FISH did not show up this time. At any rate, if anyone is interested, I will update.
With much gratitude,
Phil in PA
Chaya,
Thank you so much for the information you provide. You certainly “say it like it is” and give us good information to support our choices as we battle with this disease.
Rich in Seattle
Namaste!
August was 1 year since my first round of chemo (only 3 months of RFC). I am immune suppressed, with neutrophyls around 1.2, and still low lymphocytes, but I exercise, eat very healthy, and supplement with trutsworthy botanicals and vitamins. I feel great. Haven’t had a flu in more years than I can count, but I sure as heck “came down” with CLL, so something’s not right!
I live in Savannah, and get treatment in Brazil, where I have some health insurance. I like the visits every 4-6 months, so I can spend time with my aging parents and friends. I postponed this trip, waiting for their high flu season to end, and before ours starts. (A friend’s employee spent a week vacation in Jamaica and came home with H1N1 and is in the Savannah hospital this week — imagine how many people he infected in that plane!)
I was planning to go in October for 3 weeks, and again in mid December, to stay 10 weeks, avoiding our winter here. How safe are the N95 masks for air travel and airport transit times? They are incredibly uncomfortable and hot, I have a hard time breathing through them. Are these trips more of a risk than staying put in my home-based business, where I see no one if I dont want to?
Thanks for all you do. With my imense gratitude,
Cristina
So, if one has been weighing the pros and cons of beginning FCR or similar and probably procrastinating, to be honest), and feels as though “the moment has arrived,” would you suggest he hang on until next April or so (if possible)? I realize the devil is in the details, but is this a really, really bad time to start?
I’m a Aussie and tested posted for swine flu during what I thought was a worsening of a very bad cold that had been hanging around for three weeks. I’m into my third year of CLL – Stage 0 with a slowly climbing white cell count and no other symptoms. I’ve had worse cases of flu, but what struck me about this one, was the extreme fatigue I felt for a week after the main symptoms subsided.
My husband had the same symptoms as me, including the week of fatigue. The other symptoms included a couple of days of high temperature (one day where all I did was doze), three days of the kind of headache where you can’t think or concentrate to read, as well as a really weird feeling where I felt convinced that I had never been well and would never be well again – it was as though the flu had taken over my mind!
We have both never experienced fatigue like this before and it was totally frustrating as once the initial flu symptoms were ‘over’ we felt relatively well, apart from having no energy to do anything. Had the fatigue been less we would have been tempted to head back to work, out shopping etc, probably infecting dozens of other people. My doctor told me that once I was over the symptoms I could leave house detention. He didn’t mention the fatigue – he more of less said once I felt ‘well’, which I took to mean no fever or headache. My cough was under control and seemed mild, given I had both a cold and the flu.
All in all, I was ill for four weeks. My husband (who also had the same cold before getting his untested bout of flu) was coughing for almost eight weeks. How long were we both contagious? I don’t know…
Although my daughter and son and husband all came down with similar symptoms only I was tested, and I think that was because my medical records show I have CLL. My son, who lives with us, was diagnosed as having a cold – no test was offered; my daughter who lives with her husband, also had a ‘cold’ and then a couple of weeks later, while still experiencing cold symptoms, ran a fever for a couple of days which included vomiting. She was told by her doctor she had a bacterial infection in her gut, again no test, either for that or for swine flu (both cases were before I was tested positive and I was in contact with both of them). This was in mid-winter…
My advice is that if you feel that you have a cold, even a mild one, insist on being tested. Avoid people with colds or tummy bugs that include mild fevers. I count myself as being very lucky, given that I also have a history of chronic asthma.
I’m assuming I have some immunity to H1N1 now.
thanks for listening
Beverley
My oncologist was quite clear: live virus is an absolute no (this is the mist variety) and dead virus (injection) is fine and important to have.
Thank you so much for the update, Chaya. You are the voice of reason informing us of the facts and letting us take appropriate action.
Bill & Lois, Arizona
Chaya,
Thanks for the little “push”. I have scheduled my shots for whenever they become available here. I want to do anything possible to tilt the odds more in my favor.
I can see from the map that I live in a “brown” state. The local schools are open, but they have a lot of absentees. There have been a number of deaths in our part of the country due to H1N1 this past week. Amazing. Sadly, they were all young.
In addition to CLL, I have idiopathic pulmonary hypertension. I don’t think I would survive pneumonia. Fortunately, I have a current pneumonia shot. I have been doing my best to stay out of crowds and have limited travel. Now, if I could just keep my hands away from my face, I would be pleased with myself.
Take care,
Betty
xs10shal: You are entitled to make your own decisions, but I believe you are wrong in your assessment.
Cristina: Travel decisions are tough to make during unsettled times such as this. I am in the same boat, trying to figure out when and how to get back home to the USA from India. Good luck, I hope things go smoothly for you.
Alan: This is a bad time to have CLL, and having to go through immune suppressive therapy right away is the cherry on top of the sundae. But having said that, taking care of the CLL has first priority. If you must have therapy for holding the line on CLL, do it, but be prepared to be very careful in your social interactions while you are immune suppressed. Make sure your family is vaccinated for annual AND H1N1 flu.
anaturallearner: I had the 1957 flu as a kid and I can totally agree with your description of what a “mild flu” feels like. Not so mild to the person going through it!
jswift426: Your oncologist is exactly right. Good on him!
L. Mari Kelley: A thousand mea culpas for not writing back. Take care of yourself Lois and Bill too. I look forward to seeing you guys when I get back to Sedona.
Ziji (Steve): Symptoms of swine flu are like regular flu symptoms and include fever, cough, sore throat, runny nose, body aches, headache, chills, and fatigue. Many people with swine flu have had diarrhea and vomiting. Nearly everyone with flu has at least two of these symptoms. You are right, there is no easy yardstick that says you have swine flu or not. My suggestion is that if you have cold symptoms AND you begin to run a high fever, then it is reasonable to consider flu diagnosis. If it is flu, it is most likely the swine (H1N1) variety this season.
Thanks again and again.
The single dose swine flu shots will likely not contain mercury. The regular flu shots that are single dose are thimerisol free. They are however in even shorter supply and are reserved for small children and pregnant moms.
Hand washing and keeping your fingers away from your mouth, nose and eyes is probably the most important protection if you must be in a crowded situation. A properly fitting N95 mask may also help, but it has to fit tightly.
Patty and I will be in Sedona in mid-November. Will you?
Dear Chaya,
I can’t express how much your reports have helped me, and how appreciative I am. My oncologist never gives me this much information. Because of you I am much more informed when I talk with my oncologist. Heartfelt thanks.
Murre
most appreciated thanks
namaste
ted
Chaya–
This is from 2006, right after the flu-mist was first introduced.
The first paragraph is one that I posted on my site and the second paragraph is from Mary Browning at MDACC.
After reading a post from a woman with CLL who was told by her oncologist to stay away from her granddaughter for one month because of the use of flu-mist for vaccination, I asked for MDAnderson’s input on this subject. Here is the first of several.
“Yes, this women’s oncologist was correct in advising her to avoid her granddaughter for a month. Any live virus vaccine can be shed for a certain period of time. The route of shedding will vary according to the vaccine. Healthcare providers should ask if the person receiving a live vaccine is immunocompromised or is in the same household or has a caretaker who is immunocompromised. In these circumstances, a modified killed or inactive version of the vaccine is usually available.”
Sent by Mary Browning, MDAnderson, Research Nurse
Jenny Lou Park
Chaya,
Just returned from Mayo Clinic where I met with my CLL Specialist (you are very familiar with Him), short and simple his advice…. Do get both H1N1 and reg Flu vaccine (including anyone in the household)…. Do Not get any live vaccines…
OK folks. We now have credible confirmation on what to do regarding vaccines this fall, courtesy of Mayo and M. D. Anderson and several local hematologists.
1. Do get the annual flu shot as soon as possible.
2. Do get the H1N1 flu shot when it becomes available.
3. Do make every effort to make sure everyone in your immediate family also gets both the annual flu and H1N1 pandemic flu vaccinations.
4. DO NOT get the “FluMist” nasal spray because it contains a live virus and not recommended for immune compromised folks.
5. Prudence is the better part of valor. Try to avoid close contact with anyone who has had “FluMist” for several weeks after. This last bit of advice is a bit tricky. How can one tell if mere acquaintances have had “FluMist” without becoming obnoxious?
Go get ’em Tigers!
Chaya,
good to see you at it again, always with something we need. I was shocked to read on the cdc site that the first roll out planned for H1N1 was the live/nasal vaccine targeted for 10-42 year olds. Can’t think of a more mobile and hard to pin down or isolate ‘herd’ if I try. I hope they rethink this since as you point out, how does one know if the charming kid next to you at the post office has had the nasal vaccine? What about a pregnant school teacher?
My only quasi medical training is in the realm of animal husbandry and we are taught never to use live vaccines on any critter who is not immediately isolated. If a colony or herd is inoculated with live vaccine all are separated. I hope they rethink this plan.
We are seeing local GP offices crowded, 75 patients a day here on the east end of Long Island, ny already. kids, moms, etc. these are small practices. Our local hospital has only 82 beds total, including maternity. It’s a bit scary to think how far we’d have to travel for an iso bed.
My personal odyssey has taught me something that might help us. Purell type alcohol gels/wipes are nothing but alcohol. The germ killing effect is about two nanoseconds and does not touch flu virus. While not marketed to consumers, Hibiclens wash and Hibistat wipes have tested and are proven effective against H1N1. The protection also lasts on the skin for from 4 – 6 hours. I have gotten this for pre infusion treatment but intend to use the wipes when out of the house. I’ll save the handi wipes for shopping cart handles or door knobs as they are cheaper. Of course washing well and frequently can’t be stressed too much, but it’s nice to know that there is something else out there that does work. I have seen people practically bathing in alcohol gels apparently thinking this will protect them. The aforementioned product are available without prescription at most pharmacies and on Amazon.com as well as other sites on line. The wipes are not cheap, but they do afford some lasting protection. not for the face however. The one caution the Hibiclens company and my doctor gave me was to do a small skin test to make sure I did not have a local reaction to any of the ingredients. I didn’t.
I hope we can all avoid this bug. be well Chaya and get home safely when you do. stay safe.
all the best, Beth Fillman
Beth:
I must disagree with one of your comments above.
Alcohol is very effective in killing bacteria and viruses. Provided the alcohol content is sufficient (higher than 62% I believe, the percentage in Purell), hand sanitizing alcohol gels are quite effective in killing bacteria and virus on hands. If you buy store brands to save a little money please read the label and make sure the alcohol content is sufficient.
It does work.
Chaya,
You are fabulous. Keep up with the wealth of information you are providing for us.
Monique
Chaya,
Thanks for your thoughtful analysis, as always.
My comment is about trying to plan for getting vaccinated.
I split my time between two communities, and am currently hunkered down in the Sierra Foothills of California doing my social distancing while the flu runs its course. My medical care is in San Francisco, so I’m trying to establish some backup plans for getting the H1N1 vaccine up here. The local county health department says they are following the CDC guidelines that state immunosuppressed people over 64 are not high risk so will not get early vaccine. Many doctors up here are not requesting the vaccine so it appears it may be a challenge getting inoculated. I’m wondering if others are finding it difficult to make plans for how they will find the vaccine locally. Even the office of my SF internist says they don’t know if they will get the vaccine. The office of my oncologist will not be doing innoculations. I confess I’m worried. There seems to be a gap in the last leg of the delivery system.
LynnS:
Welcome to the real world, where there is a supply to demand imbalance.
The good news is that the H1N1 swine flu (pandemic flu) virus has not mutated and therefore we have a good match between it and the vaccine for it. It will save many lives.
The bad news is that the rate of manufacture of the vaccine is far slower than we hoped. The chicken egg based manufacture is inherently slow and the yield of vaccine is lower than projected earlier in the year. There will be a limited amount of vaccine shots available in the early months, not enough for everyone. That means prioritization. If you think things are tough in USA, think how it is in poor and crowded countries like India.
There are no easy answers. I am curious to see how it plays out.
For what it’s worth… My spouse’s oncologist just told us yesterday that we (my spouse, me and our 14-year son) should all get the shot and that none of us, including our son, should get the live-virus mist.
I have to say I’m still undecided at this point. My nutritionist and general health doctor (who is an MD) advised me against taking the vaccine. She told me she knows many doctors working in hospitals in New York who have had to take it but didn’t want to because it’s such a new and untested vaccine. My children’s pediatrician will be giving the vaccine when it’s available but he too is generally cautious about new and untested vaccines. I’ll be interested in what he has to say about this one.
The new untested vaccine which comes quickly to my mind is the Lymrix vaccine against Lyme disease, which had to be removed from the market when it was found to give recipients arthritis. Trouble is that we won’t actually know if this vaccine has side-effects for some time to come.
evansjenny — my understanding is that the H1N1 is produced in the same manner as the seasonal flu vaccine, so this is NOT totally a new and untested vaccine. Seasonal flu vaccine can change from season to season, but the technique for producing them is the same. And, it’s about risk and reward. If your CLL has left you with an intact robust immune system that can fight off complications from this virulent novel H1N1 then you are very lucky and I envy you. I don’t have the confidence that mine can, so will happily risk the vaccine rather than complications from the flu. I’ve educated myself enough about the science of my immune system to accept that I need all the help I can get and that even with the vaccine, my best protection is to get all those around me vaccinated as well. Others .. please correct me if I’m wrong on any of these points.
PS — I’m referring to the shot, not the nasal spray.
LynnS
One can only hope people around you, your family and friends and strangers, are eqaully responsible and get the flu vaccinations. Without herd immunity immune compromised people and other at-risk groups are at real danger of getting quite sick.
Countries are at risk as well, if the sudden spurt in the number of sick needing medical attention overwhelms their fragile health-care facilities. I know what it is going to be like in poor countries like India with shaky infrastructure. I am already seeing the effects here. We will look back on fall of 2009 as the pivotal time when decisions we made, singly and collectively, had a massive effect on how the world coped with a truly global problem. Be a part of the solution, for your sake and for th sake of others around you. We are all our brothers’ keepers.
Let me give my two cents about the safety of the H1N1 pandemic swine flu vaccine.
1. This particular H1N1 flu virus is no inherantly different from any other flu virus that we have faced in the past, the reason it is a pandemic is that people in general have no immunity against it and therefore much larger percentage of people will get infected and sick. Give it a couple of years and our bodies will adjust. The problem is what happens in the couple of years while we develop immunity against it.
2. The vaccine against the H1N1 pandemic swine flu was developed using the same procedures used to make similar vaccines in years past.
3. It is inaccurate to say this vaccine was “rushed”. It went through as much clinical testing, if anything it has received a lot more scrutiny. It is no more dangerous than any of the flu shots we have had in the past decade.
4. CLL patients may not get much protection from vaccines. That is true. But what little you get, it is going to be worth it because the risks are so much higher for you if you do come down with the flu. Besides, how can we preach what we do not practice? I wish I and my family here in India had access to the H1N1 shot. Not for a long time, and even when it becomes available it will be heavily rationed.
Here is the link to an EXCELLENT article in Nature, a very highly regarded publication. And a quote from it. Please try to read it.
http://www.nature.com/nature/journal/v461/n7265/full/461698a.html
“The public-education campaign should also correct the misconception that H1N1 flu is mild. It is mild in most who catch it. But for those individuals – mainly young adults – who will develop the severe form, H1N1 is life-threatening. Moreover, because the virus is new and immunity is lacking, many more people will get it than is typical for seasonal flu, and the toll of serious illness and deaths will accordingly be that much higher.
Finally, people should be reminded that vaccination isn’t just about protecting themselves; it’s also about not spreading the flu to others, which, importantly, alleviates pressure on overstretched hospitals. Campaigns should give altruistic appeals far more prominence than they typically have in the past; research shows that they can be surprisingly effective.
More generally, for officials and researchers at all levels, the scepticism over the pandemic vaccine should serve as a timely reminder of the imperative to work to gain greater public trust in science-based advice and in those who give it.”
Chaya,
I hope everyone takes your advice. I still remember coming down with the swine flu that circulated in the 50’s. It was at my 10th birthday party and started with one of the worst headaches I can remember. Then I threw up, a lot.
My Immunoglobulins haven’t tanked as yet, but I’ll be getting the shot anyway.
Jim
And a very ill-informed county councilwoman on the Big Island of Hawaii has created a stir there saying the vaccine contains 25 x toxic level of mercury and is unsafe. I loved this quote from the local Hilo newspaper, “”The mercury that is in the vaccine is less than a serving of ahi,” said Judy Akamine, Hawaii Island’s state public health nurse.” In Hawaii, it’s all about food. But the take-away message (oops .. no pun intended) is .. don’t worry about the mercury.
I’m looking forward to my shot !!!
While I can see that doubting this vaccine is not a popular position, I think it’s important to go into this with all the facts. Let’s not forget two important points:-
First, the last time the government tried to protect the US population against a H1N1 variant of flu, back in 1976, they did a mass vaccination which resulted in a few of the millions who were vaccinated suffering injury and some even died. In that case the epidemic never arrived.
Secondly, the government has granted legal immunity to the makers of this current swine flu vaccine, which means they are making the vaccine without having to take any responsibility for it. Hardly reassuring!
So while not taking the vaccine is certainly a risk. Taking it is also a risk.
As with other aspects of CLL, it seems you have to weigh the pros and cons and make an educated guess.
To evansjenny,
I’m not directing this at you personally, but rather at the two or three arguments you are making, which I see almost verbatim on various websites of those who feel there is some conspiracy going on with the H1N1 vaccination / or flu management.
Immunity:
Drug companies are fueled by their profits and their shareholders. Even if a drug company has “immunity”, there is no logical deduction that they will be sloppy in their drug preparation. If their vaccine fails, their shares drop and it goes down from there … not where they want to be.
Risk:
Not all risks are equal.
There is so much misinformation floating around on this. There are several good websites that actually do the math to compare the risk of getting vaccinated (and suffering in some fashion) and in not getting vaccinated and suffering from the flu. Even for the very healthy, the numbers favor greatly getting vaccinated. And for us with CLL, our odds of flu complications go up.
1976 comparisons:
That flu pandemic didn’t materialize. This one is here and being measured. So the logical argument that because the 1976 pandemic didn’t materialize we don’t have to worry about this one doesn’t hold.
no one has mentioned the Aluninum in the vaccine can also be a problem to the brain.
please tell me i am wrong.
thank you to everyone
ondrea
Ondrea .. in my humble opinion, you are really wrong. There is an interesting website, ScienceBasedMedecine.org that takes on many of the these fears that have been propagated / mongered, especially on the net. It addresses vaccine contents, GBS incidence and also takes on some of the worst offending fear monger-ers. The editors and contributors of articles are docs. I just discovered it so have not spent a lot of time surfing there. I’ve been looking for good reliable sources to refer friends to in my quest to encourage H1N1 vaccination. Anyone else found good supportive sites?
For a contrasting point of view, you might want to check out:
Are Vaccines Safe?
Bracing Ourselves for More Sham Vaccine Studies
by Richard Gale and Dr Gary Null
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