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  #1  
Old Mon Aug 31, 2009, 11:29 PM
Marrowforums Marrowforums is offline
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H1N1 (Swine) Flu Advisory

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) has issued a Health Advisory about the H1N1 Flu, commonly called the Swine Flu.

The U.S. Centers for Disease Control (CDC) provides information about H1N1 for the general population, but the AA&MDSIF advisory is specifically for patients with bone marrow failure diseases.

One particular question on the minds of many patients is answered in the advisory:
Should patients with bone marrow failure diseases get the H1N1 flu shots when they become available?

We believe the H1N1 vaccine will be safe and recommend getting an H1N1 flu shot. However, because of your underlying hematologic disease and its effect on your immune system, the H1N1 flu shot may not be as effective for you as it may be for other healthy individuals. This is especially true if you are taking immunosuppressive type drugs like ATG and cyclosporine.

For PNH patients, vaccination is fine if you are on Eculizumab (Soliris). If you are not receiving this drug, there is the potential for vaccination to cause activation of complement and lead to a flare up in your hemolysis. Discuss the risks and benefits with your doctor.
Other advice and information from the AA&MDSIF:
  • Follow the CDC guidelines to minimize exposure and the spread of the flu, including frequent hand washing and covering coughs.
  • If you get the H1N1 flu it is likely that you can take antivirals such as tamiflu and relenza, but check with your doctor.
  • Other peope in your household should be vaccinated if they are medically eligible.
  • You should avoid contact with people who have flu symptoms or the flu.
  • For pediatric patients, check with the doctor and local school district.
  • You should have a backup plan if your caregiver is ill or is exposed to the flu.
  • Periodically check the AA&MDSIF and CDC website (using the links above) for new information.
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  #2  
Old Tue Sep 1, 2009, 06:42 PM
Vera W Vera W is offline
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Flu Shot

I was told by all means get it but the worry is it will not be so effective because of the immune suppressants. I was not able to lower my doses because even though it is so much improved I still have trouble spots. But I keep forgetting I am only two months out! Hopefully by the time the full shot is available I will be not so suppressed. I am Determined to stay well!!
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #3  
Old Fri Sep 4, 2009, 11:03 PM
jnwink jnwink is offline
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Swine Flu

I am a teacher getting ready to return to school on Tuesday. I was dx in 2005 with mds I have a low white count but every thing else is low normal now. I have been on wait and watch. My dr. instructed me that I am going to get the normal flu shot on Saturday and in Oct. get the swine flu shot. We discussed a plan if my school becomes hot for swine flu He wants me to remain at home until the vaccine would have done its job.
I have the sick days to cover my absence.
Is anyone else facing this situation
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  #4  
Old Sat Sep 5, 2009, 08:09 PM
knstone knstone is offline
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Question on H1N1 vaccination for low ANC MDS patients?

The AA/MDS Foundation posting indicates that MDS patients should take the normal flu and H1N1 vaccinations.

I have a very low ANC, .15 to .30 (150-300), and last year my hematologist did not recommend that I take the normal flu shot.

I've talked to a few MDS patients whose doctors have recommended a flu and H1N1 shot for them.

Have any MDS patients with very low ANC values been instructed to take the flu or H1N1 shots?
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #5  
Old Mon Sep 21, 2009, 11:36 AM
bchenaille bchenaille is offline
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Swine Flu vaccine controversy?

Like all of us here, I have been diligently scouring the internet looking for the best recommendation on the h1n1 flu vaccine. I found a VERY compelling case against taking the vaccine from Dr. Mercola. Just curious what everyone else feels about his reports.

Please give feedback.

http://articles.mercola.com/sites/ar...-Flu-Shot.aspx
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  #6  
Old Mon Sep 21, 2009, 03:54 PM
Marlene Marlene is offline
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I've been aware of both Dr. Mercola and Dr. Blaylock for quite some time...both highly respected in the integrated/natural health world. Dr. Blaylock is not an alarmist. I actually saw him speak at a conference years ago and very much liked him. He does his research and will challenge the mainstream. He not anti medicine but there is probably some bias there. But that's no different than those that want to insist that vaccines are safe for everyone. There's a lot of $$$$ at risk here. Kids today get up to 30 vaccines and maybe on an individual level are ok, but the cumulative effects can be harmful which may not show up for years.

We've had the opportunity to see how John reacts to cold and flu viruses over the past few years and he does very well. It's also possible he's already had the swine flu last March so he's not gonna get one. Also, the seasonal flu vaccine is the same one from last year. So if you got it last year or got the flu, I don' think you need to the seasonal flu shot. But check with your doc.

If you are going to get a flu vaccine, make sure it's a single dose vial that is preservative free. You don't want to share a vial that's used for others and the added preservative is not something you want to have. This link has what's been approved by manufactures so you can ask specifically for the brand you want.

http://www.askdrsears.com/thevaccinebook/
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Mon Sep 21, 2009, 07:39 PM
Neil Cuadra Neil Cuadra is online now
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When there is controversy over a medical subject, it's easy to find information on the web that favors each side of the controversy, so it's important to decide which sources you have the most confidence in.

When I asked experts how to evaluate medical information we all find on the Internet, the advice I got was to give less credence to commercial sites (those that have health products for sale, typically with a .com address, since they have an incentive to bias their claims or use scare tactics), and to put more trust in non-commercial sites, especially ones that are recommended by sources you already trust.

And, as Marlene says, check with your doctor. He or she is the expert who knows your case the best.
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  #8  
Old Tue Sep 22, 2009, 07:46 AM
Marlene Marlene is offline
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That is usually true, you need to follow the money. Dr. Blaylock sells no products but is on the board of Life Extension Foundation. Don't know if he's compensated for that. But he never sells product nor does he push using Life Extension that I'm aware of. So I feel he's a pretty good source. And remember, pharmaceutical companies are all .com's and are responsible for much of the education of doctors today.

So you really need to evaluate all aspects of health care...orthodox and alternative. Both have their positive aspects but you must have a healthy skepticism when evaluating solutions to your health. There's lots of money to be made on both side. Did you know that the guy who developed the salk vaccine did not make any money on it? Same is true for the doc who invented the kidney dialysis machine. It never crossed their mind to patent it for financial gain. After all, they were doctors because they wanted to help people in need and not to make money off someones misfortune. Times have changed.

So much controversy. There's a balance somewhere and I think we as individuals can find what works best for us. There's not a "one size fits all". We see that everyday in how people respond to the differnet treatments for AA/MDS. It's all so varied.

I'm off my soap box now .
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #9  
Old Sat Oct 31, 2009, 01:34 AM
Marrowforums Marrowforums is offline
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The FightFlu.ca website by the Health Agency of Canada offers general H1N1 flu information as well as specific information by province.

Last edited by Neil Cuadra : Sun Nov 18, 2018 at 09:52 AM.
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  #10  
Old Tue Nov 3, 2009, 12:23 PM
Vera W Vera W is offline
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For Neil or Ruth

Hi you two
I heard last night that young children are being recommended to have a double shot. What about someone like me that has the immune system of sn infant? I haven't found any guidelines for one or two shots? Have you heard anything?
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #11  
Old Tue Nov 3, 2009, 02:30 PM
Neil Cuadra Neil Cuadra is online now
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The schedule of immunizations for transplant patients, who are indeed like "beginners" again, is part of post-transplant treatment. That's something for your doctor to decide, along with the schedule for your other re-immunizations.
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  #12  
Old Wed Nov 4, 2009, 03:25 AM
Chirley Chirley is offline
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Hi, I read a report which said that trial tests will not be finished in Australia until sometime this month and until then, children will not be offered the injection. I also have spoken to a lot of people who work in the infection management field and they are refusing the injection, at this stage.

Originally the vaccination was free here to anyone who was at risk i.e the sick, the elderly, indiginous and health care workers. I'm not sure but I think it is being offered free to everyone now.

I know some people who have had it and have had no side effects, but also this is our summer and flu isn't a problem right now so I don't know how effective it is either.

My haematologist said that I could have the vaccine but he didn't know how effective it would be, bearing in mind that I have almost non existent lymphocytes.

I would like to hear from people in the northern hemisphere to find out whether they had any side effects from the injection and whether it did prevent the flu.

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #13  
Old Wed Nov 4, 2009, 05:24 AM
Birgitta-A Birgitta-A is offline
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Flu vaccination

Hi Chirley,
You know in Sweden - where we pay the higest taxes in the world - the government has bought 2 injections for everybody though no children less than 6 months old, no children less than 3 yo if they don't belong to a risk group and nobody with a strong allergic reaction against egg will get the vaccine.

I had my first shot last week without complications so far .
Kind regards
Birgitta-A
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  #14  
Old Wed Nov 4, 2009, 02:15 PM
Vera W Vera W is offline
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H1N1 shot

Thanks Neil, the UCSF people just told me to get both flu shots. I am on the waiting list at my local hematologists.It was suppose to be here this week. I had the regular flu shot a few weeks ago. Does any one know if your donor gives you any immunity? My regular doctor said it wasn't so much my regular counts which are still pretty good but the lowered T cells because they are the ones that decide how the various viruses are attacked. I didn't see my counts last visit because they forgot to give them to me. The time before my lympos were .85 Pretty low! They did lower the immune suppressants from 2-0 to 1.5 and I am only on 10mg prednisone. Hopefully it will be better. Chirley I will let you know how the shot goes! My doctor said that as my immune system grows and is less suppressed that the flu protection will be greater. Last week I saw no rash for days but I am seeing some brown speckles, nothing new or red and it comes and goes. It is strange. Brown is suppose to be healing. Everything is so dependent on getting rid of this rash, otherwise the doses will stay the same! Yesterday I walked around my house twice, walked up to check my propane tank and got on my tread climber (Power off) and did 3 sets of 10 on my manual stair stepper! It's a new record!!! Take care all! Vera
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #15  
Old Wed Nov 4, 2009, 07:30 PM
Chirley Chirley is offline
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Hello,

Birgitta, here I was thinking we Australians had the highest taxes. I'm sorry you beat us on that score. I pay 30% of my income and 10% Goods and Services tax on just about everything we buy, including telephone service, petrol, the painter to paint the house etc. As well as that there are hidden taxes. State government stamp duty on home loans, (I think), duties and taxes on just lots of things which were supposed to have been abolished when the Goods and Services tax was introduced but years later are still being charged.

As well as that we have a medicare levy on our gross income to help fund the medical system but unless we have private health insurance as well we are charged an even higher levy. On top of that we have local government fees which go to provide local services such as garbage collection, sewerage etc.

I think I'm one of the few people who don't mind paying tax. I think that I am blessed to live in a country that is lucky enough to have all the services and welfare/social services that we do have.

Vera, I'm interested to know about your lymphocytes. My T cells are low but it's my B cells that are almost non existent. The haematologist told me that the lymphocyte problem can lead to leukaemia, lymphoma and similar diseases. My total lymphocyte count is usually between 0.2 and 0.4, I think normal is supposed to start at 1.5 and higher.

Today is 32*c and we are expecting thunder storms, I love storms.

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #16  
Old Thu Nov 5, 2009, 12:00 PM
Vera W Vera W is offline
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Counts

Hi Chirley,
I will let you know what the counts are after Monday. They were hanging out between 150-185. I wonder if the flu shot (regular shot) could have brought them down, my health remains good!Enjoy your storm, I like them too. It kind of makes me feel energized.
I just read the CDC recommendations for flu shots and they are highly recommended for immune suppressed people.
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #17  
Old Sat Nov 7, 2009, 03:05 AM
Neil Cuadra Neil Cuadra is online now
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Quote:
Originally Posted by cme01 View Post
I would like to hear from people in the northern hemisphere to find out whether they had any side effects from the injection and whether it did prevent the flu.
According to the CDC, minor side effects of the H1N1 vaccine are similar to any flu vaccine: soreness, redness, or swelling at the injection site, headaches or muscle aches, sometimes fever or nausea. Symptoms typically last no more than 1 or 2 days. I couldn't find any statistics on the frequencies of these side effects. Many people have no side effects at all.

Rare but more serious side effects -- fainting or allergic reactions -- would show up soon after the shot. I spoke to a doctor yesterday who worked at an H1N1 vaccination clinic. They vaccinated 2200 people and nobody at all had a bad reaction there.

Some people will get a cold or flu (including H1N1) after getting their H1N1 shot, but that's because they were already coming down with it or caught it before the shot took effect, not because the dead (inactivated) virus in the shot made them sick. These people would have gotten the same cold or flu without the shot. Unfortunately, some of these people will blame the flu shot and tell other people; that's often how rumors get started that keep people from getting vaccinated when they should.
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Old Sat Nov 7, 2009, 04:21 PM
Margie Margie is offline
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HINI (Swine) Flu Advisory

My hemotologist said I could not take the H1N1 flu shot because it is a live virus. This does not seem to be the prevalent opinion. I have a very low white and neutrophil count. Maybe this affects his decision.
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Old Sat Nov 7, 2009, 05:26 PM
Marlene Marlene is offline
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Only the flu mist type of vaccine contains the "live" virus. The shot are dead viruses. The flu mist was available before the shots and was approved for those in the 2 - 49 yr old range of healthy people.

Efficacy may be reduced if your WBC/ANC is very low.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sat Nov 7, 2009, 06:35 PM
Margie Margie is offline
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H1N1 (Swine) Flu Advisory

The fact that my hematologist thought that the H1N1 vaccine contained live virus is a bit unsettling to me. I'll ask him about it at my next appointment.
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  #21  
Old Sat Nov 7, 2009, 06:44 PM
Laura Laura is offline
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The vaccine does not contain a live virus only the nasal spray does.

Laura
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  #22  
Old Mon Nov 9, 2009, 09:32 AM
Marlene Marlene is offline
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Maybe all he had at the time was the Nasal mist form. That was available early on. It took a while longer for the shot to be manufactured.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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