vaccinations post BMT

[mo_shane]

hi all,

i know this forum is very quiet at the moment, but hopefully a few will check in sooner rather than later

my son is now 20 months post BMT and his hemo is looking at re-immunising him at our next visit (end october). i'm reluctant as i have read reports of some vaccines causing bone marrow failure, or relapse in aplastic anaemia.

have any BMT patients here been re-immunised? if so, have you had any problems? or conversley, has anyone refused vaccines?

looking forward to sharing views here

gina xxx

[Ruth Cuadra]

Gina,

I don't know what the most current medical thinking is about when it is appropriate to re-vaccinate a BMT patient. The considerations may be different for adults and children, but I'm sure the patient has to be off all immunosuppressants before proceeding with immunizations.

Here's what happened to me:

My transplant was in October 1998. Because of GVH issues, I was on immunosuppressants until June 2003. As soon as all the immunosuppressants were stopped, my doctor referred me for immunizations. I got them in 3 batches over the next year: tetanus, Hib (influenza), hepatitis B, pneumovax, and polio.

I had a flu-like symptoms after the first batch, which doctors thought was probably a reaction to the pneumovax (pneumonia vaccine), so I didn't repeat that one. Also, I was found to have sufficient polio antibodies after the first shot, so it was not repeated either.

There are reports from parents of children diagnosed with aplastic anemia that seemed to have followed closely after the administration of the hepatisis B vaccine, but there is little, if any, scientific evidence of a relationship between the two. This is a hot topic among parents with experiences in this area and I hope some will share them in the AA forum.

Regards,
Ruth

[JeffBeck]

Gina,

I have not reached that point yet as my transplant is scheduled for Oct,12. But the doctor indicated at 12 months post transplant that I would need to be re vaccinated.

[Marrowforums]

The following information was provided by the Patient Information Service of the Aplastic Anemia & MDS International Foundation.

Some doctors recommend influenza vaccination this time of year for anyone more than 6 months post transplant. Live attenuated vaccines should generally be avoided in transplant or immunosuppressed patients. Patients with GVHD often do not respond to any vaccines.

You should show your doctor what you have read and discuss it with him or her thoroughly.

[mo_shane]

sorry, i hadn't logged in for a while so didn't realise i had replies.

ruth - thanks for the info. what you are saying is pretty much spot on with what shane's haemo has said. he was off cyclosporin in march this year. apparently they like to re-immunise 6 months after removal of cyclo.

what's annoying is, i don't even know what they are planning to immunise him with yet - but am working on that. we don't give the hep b vaccine over here and polio isn't a live vaccine. however, i do think they might want to give him the MMR vaccine (measles, mumps and rubella) which is live. that is the only one i am really concerned about.

jeff - thanks for the input. if i remember correctly, i was told the same thing. only they had shane on cyclosporin longer than expected. i remember being surprised when they told me it would be at least 18 months BMT before he was strong enough to be re-immunised. infact, it's nearly two years now!

so you're off for transplant very soon then - best of luck! i hope it goes as smooth for you as it did for my son. he was very lucky with a quick recovery with no GVHD

marrowforums - thanks also for your advice. i think what surprises me here is that i had a great relationship with shane's haemo and doctors. they know i research things online and really were inclusive in shane's treatment. however, on our last visit, i actually handed over an excerpt from the "british journal of haemotologists" - "guidelines for the treatment of aplastic anaemia" and it clearly states that live vaccines should only be given if absolutely necessary. the doctor i saw said she would pass it along to his haemo and have her call me. that was one month ago - nothing heard. yet i get a call from our local clinic asking me to bring shane in for re-immunisation. they had received instructions from the hospital. i asked to her to list the vaccines they were requesting and she had no idea! i'm shocked to be honest and told the nurse i would not be bringing him in until i spoke to his haemo. i called the hospital and have left a message there. so, it's a waiting game.

thanks all for your input. i feel a little more assured with my decision to at least question the neccessity of a live vaccine - especially the triple dose one - MMR.

gina xxx

[mo_shane]

i thought i would just reply to myself here - it might be of use to others in the future....

last week we had a check-up at the BMT clinic and the doctor that usually sees shane was quite surprised at my concerns with him being re-vaccinated. i told her that i had been waiting for a phonecall and also waiting to hear what vaccines they were planning on giving shane. she presented me with a very long list, most of which were not concerning. as i guessed, they were proposing the live MMR vaccine (measles, mumps and rubella). we had a lengthy discussion and she stressed that "herd" vaccines were the best way to go. i disagreed.

measles, admittedly, can be nasty as i know it can at worst, lead to death. it can also cause deafness. i had it in mind that at a push, i would agree to this one. mumps - the worst case could result in infertility. i figured that as outlined in shane's conditioning protocol, the hemo said that shane would be infertile, then mumps wasn't an issue for us either.

as for rubella, it's a disease that preys on pregnant women. i know i sound awfully selfish here, but why should i risk relapse in shane to comply with "herd" vaccination?

well the long and short of it was... i told her that if they (her and his hemo) felt he should get MMR, then i would trust them and go along with it. but i felt it was my duty as a parent, to bring to their attention the risks involved through the AA guidelines in the British Journal of Haemotology. i said that if shane relapsed, i wouldn't forgive myself for not questioning their decision to give him these vaccines. with that, we left her office and headed off for some blood tests.

she later tracked me down and said shane's hemo was on her way to speak to me. i was relieved that i had provoked a reaction. a few minutes later, our hemo appeared and said that they would today take blood to perform titers - testing to see what (if any) immunity he had maintained after ATG and chemo. based on that, they would closely look at the risks involved and evaluate the necessity for the MMR vaccine. she did conclude that if any, mumps would be a vaccine that they would probably go ahead with. she expanded by saying that although we believed shane would be infertile, there was always a chance he could be fertile. so based on that, we have to assume he is and act in his best interests to preserve that. i couldn't agree more.

so shane had to give quite a bit of blood for all these tests. however, i feel very happy and believe i got the result i wanted.... i wanted them to investigate this further and not allow shane to float through the system of "6 months off immunosuppressants - vaccinate" without looking into the possible adverse affects of vaccination.

so, i'm pretty pleased with myself :-)

gina xxx

[kismit1496]

My daughter is in remission for AA and is now 6 (dx'd officially 1-25-05, first hospitalized 12-18-04). She only had cyclo for 6 mos and I have no idea how it affected her immunities however from what I've read I've decided she won't have any more vaxs and no one in our house will as well. Why take the risk? I will ask for titer levels if it becomes an issue but thus far her hemo dr is fine with my decisions. I know it doesn't seem to help but I'm just having a hard time understanding why I should subject my daughter to these in an area where its very unlikely she'll be exposed to any of these illnesses. Now if we were traveling to the amazon then perhaps I'd reconsider.

Julie

[Wendy Beltrami]

I completely agree Julie. I think we should all think twice before automatically vaccinating. It doesn't take much effort to find out the number of cases in your area of a particular disease and to evaluate the risk vs benefit for your particular situation.

For example, my oldest son recently left for college and I read a lot about how he should get a meningitis vaccine because freshmen living in dorms are considered a group at risk.

I followed a link on his college's website and found that In Oregon where he is attending college, unlike the rest of the country, 66% of the reported cases of meningitis have been serotype B, not covered by the current vaccine. For this reason, the Oregon Health Division does not support routine vaccination in college students. This wasn't advertised, it was information I had to go looking for.

We all take risks every day, but there are some that simply aren't worth it.
If I had a do-over, you can be sure that my son with AA would not have gotten his Hepatitis B vaccine at age 7. He had absolutely zero chance of getting Hep B but the result was that the vaccine triggered something in his particular immune system that resulted in Aplastic Anemia.

Wendy/mom to Grant, age 15
dx 12.4.98 AA

[Marlene]

Gina,

What was the outcome of the blood titer tests for immunity? We attended a symposium at Hopkins in October and they stated that not all immunity is wiped out even with High Dose Cytoxan. John, my husband was supposed to be re-vaccinated after treatment also. He's yet to do any of it. And if he does, it will be selective and after he too has blood work done.

Marlene

[mo_shane]

thanks julie and wendy for your input. i had put a lot of research into this - wendy knows as we have communicated via email.

i didn't want to appear completely anti-vaccine as i knew the doctors would just try to fob me off. i wanted to present them with the very real possibility that shane could relapse after receiving any live vaccine. fortunately here we don't vaccinate with hep b. but still, we do give the triple live vaccine of MMR.

marlene - we don't have any news yet. it was agreed we would discuss this on our next trip which is jan 26th. shane had ATG for 3 days, coupled with high dose cytoxin for 5 days pre-transplant. i will get back to you and let you know what's happening


gina xxx

[Marlene]

Thanks Gina...good luck with your visit the end of the month.

Marlene

[mo_shane]

hi marlene,

i'm back - albeit a little late as usual

whilst i do have news, unfortunately it won't be relevent to you and john, simply because shane had a BMT. it was something i didn't even think about, but apparently shane has acquired some immunity when receiving his brothers bone marrow. more importantly, the only vaccine i was concerned about was the MMR, which is a live vaccine. apparently shane has sufficient immunity to avoid the contraversial issue of re-vaccinating him.

this for me was excellent news! despite the doc originally plugging for us to re-vaccinate, i felt she too was relieved that this particular vaccine was no longer an issue.

i can't believe i was so dense in not realising that through ryan's bone marrow, shane would have received parts of his immune system too. so unlike you, we weren't working from scratch as it were. the doc did say the immunity he did have was definately from ryan. so i can only assume that without the BMT, shane would not have had any immunity.

however, the titers did show he needed other vaccines, so he wasn't covered for everything - no surprises there i guess. but if they are not live vaccines, i'm not too concerned.

i think overall, i'm pleased with the outcome


gina xxx

[skoopman]

Gina,

I also wrote to you on the Aplastic Central site but thought I would check in here and lo and behold you have updated.

It looks like they did do titers and he does have some immunity? Can I ask to what? How far out is Shane from BMT?

Michelle's nurse practioner has said that with BMT's the body gets a type of anmesia, for lack of a better word, and even if immunity is transferred over at some point it is lost. However it seems like Shane should be well past that point.

Thanks for your info,
Suzanne
mom to Michelle, age 6, SAA 6-1-05, BMT 11-11-05
www.carepages.com Michelle5

[mo_shane]

Originally Posted by skoopman

Gina,
I also wrote to you on the Aplastic Central site but thought I would check in here and lo and behold you have updated.

awww, sorry suzanne, i do log in from time to time, just not so often. guess i missed it

It looks like they did do titers and he does have some immunity? Can I ask to what? How far out is Shane from BMT?

yes, they did titers for a whole host of things. and yes, he does have sufficient immunity to some. i stopped listening once she got past MMR - that was the only vaccine i was concerned about because it's live. shane is now 2 years + 3 months post BMT.

Michelle's nurse practioner has said that with BMT's the body gets a type of anmesia, for lack of a better word, and even if immunity is transferred over at some point it is lost. However it seems like Shane should be well past that point.

wow, you learn something new everyday

yes, it does appear that shane has held on to some of the immunity that his brothers bone marrow provided. i'm just so pleased the titers showed immunity to the MMR vaccine. i was with the doctor when she called through to the lab to get the results. honestly, it appears that the docs here know so very little about AA - it's a continuous learning curve. it's not that i don't feel they are competent, because i know that if they are in doubt, they do consult with the AA specialist in london.

the lab was saying that shane's titers showed immunity to MMR. for the next five minutes or so on the phone with them, she was trying to ascertain what was an acceptable level. it turns out that the fact that he showed *any* amount of immunity, meant that he was immune.

i hope that's helped.

i notice by michelle's BMT date, she is almost just one year behind shane. do the docs plan to re-vaccinate? if so, are there any live vaccine's involved?


gina xxx

[skoopman]

Gina,

No worries on replying here. It was tonight that I posted on the Aplastic Central site, within 20 minutes of posting here.

Yes, Michelle's dr's are planning on revaccinating and I haven't even looked into what is live or not. I know Varicella (chicken pox) is a live one. Not sure what else.

I will certainly be asking she get tested prior to revaccinating. I had mentioned it before but was told the amnesia thing. I was waiting to bring it up again until you got your results. I figured if Shane showed no immunity to anything I would drop it, but now I will fight for it. We go back to see her dr in a few months and I will talk to him then.

Thank you so much for your response,
Suzanne

[mo_shane]

hi suzanne,

you're welcome for the info. i'm just pleased that not only can i ask for advice here, but share information too. i guess that's what it's all about

we don't give chicken pox vaccines here, nor hep b. no idea why, but i guess it isn't a concern in these parts. my only concern was the live MMR vaccine - measles, mumps and rubella. apparently there has been an outbreak of mumps amongst males age 18-24 attending universities in both glasgow and edinburgh for the past two years now. so if shane had no immunity, as my doc suggested, i think mumps may have been a vaccine i would have seriously considered giving him. very fortunately, it's not something i have to consider now.

as far as michelle is concerned, i would definately ask for titers prior to any suggestions of re-vaccinating. and as wendy suggested, try to research what is a threat to her in your local area. if it's not seriously needed, i would think very hard about risking a live vaccine. from my initial post on the aplastic central forum, there is a link to a document from the british journal of haemotologists - clearly outlining that live vaccines should be avoided in AA patients unless absolutely necessary.

as a child, i had measles, mumps and chicken pox - apart from being uncomfortable, it never did me any harm. i'm not massively anti-vaccine, but in shane's case, i felt i had to review this very carefully as he isn't a normal healthy child - his bone marrow has been seriously compromised. for that reason, the argument of "herd vaccines" didn't work for me.

btw, i tried to find michelle's page on the carepages website, but i couldn't find it. could you give the direct link? i would be interested to see how you guys have coped with AA. i keep meaning to set up one for shane, but it never seems to progress from the "thought" process


gina xxx

[skoopman]

Gina,

The easiest way to get to her website is to go to www.carepages.com Click on the link that says "Visit a Carepage." At the top there will be a field for "Enter page name" Her page name is Michelle5 (all one word). You have to register to access the page, but it is free and aside from one survey you will get after the second or third time you visit there is no spam associated with it.

Let me know if this works.

Thanks again for the info,
Suzanne

[susdragon]

Hello all! This is my first time in the new forum. Still need more time with it to see how it is all organized. But I did find this thread and am grateful for the discussion that came from it as this is a question (about re-immunization) I had for my hemo last year. I did not have a BMT but I went through the ATG/ALG Cyclosporine regimen and much of my immunity was obviously wiped out.

Gina, you did the right thing by questioning and getting your health providers to engage you in your debate. Many of us are intimidated or simply not informed and don't know what questions to ask. I applaud your courage! It seems that if you feel good about the results, then you did the right thing by following your gut. Go with it!

It is the great white north time of year and road conditions are dicey at times. This leads me to think about what would happen in the event of an accident, especially since my platelets continue to be low. Some time ago there was a posting about a registry that you could join (I think it was $100/yr?) and there were medic-alert type bracelets and other jewelry that would identify you as a person with a medical condition. I believe the registry was international (at least within North America). I began the registration but got stuck when there was no way to list my current meds and so I gave up. Now I think it is an important thing to pursue. Does anyone have any recollection of this?

Thanks,

Susan Bowers

[skoopman]

Susan,
I looked into that when my daughter first got sick. Medic Alert has a program in which the person wears a piece of jewlery and whoever finds you calls a phone number. At the other end of the phone line is a person who will give them all relevant info. I never got beyond the thinking stage with the program though so can't give you more details.
Good luck,
Suzanne

[mo_shane]

hi suzanne,

thanks for the info on accessing michelle's story. i did register with care pages and have started reading at the beginning. it may take me a while to get through it, but i am really interested to hear how you guys coped with it. you don't run into many folks with AA who have had a BMT.

susdragon - welcome to the forum! thanks so much for your compliments, it does mean a lot. sometimes you feel like you're very alone with all this, especially as AA is relatively rare. well, i did over the vaccine issue. prior to that, shane's doctors were always brilliant and we shared as much information as possible - agreeing on everything. this is the first time i questioned them, and i wasn't comfortable doing so. i'm a conformist by nature, so yeah - it was quite a step for me and i'm pleased to have stood my ground. infact, if i hadn't accidentally fell upon that article, i would have been none the wiser - that's a scary thought.

i'm also glad to have shared views with wendy also. now her son's story is something to sit up and seriously take notice of. whilst i know that we are all different and react differently. but when the effects of something given can potentially be so dangerous, it does pay to to research and research as much as possible in order to make an informed decision.

you mentioned vaccinations for yourself - have you come to that stage yet? i know you didn't go through the BMT route, but i know others who didn't and have gone through ATG/ALG and chemo in some cases, with cyclosporin too. it would be interesting to hear how others get through it - with vaccines or not.


gina xxx

[kismit1496]

okay I'll put it out there since i"m becomming more and more militant in my anti-vaccine ways. Most of us are aware of the issues surrounding the live vaccines. BTW the chicken pox vaccine they now say only lasts ten years and there is a higher incidence of shingles within the vaccinated populations. Anyways how does one's body deal with aluminum and mercury that is used to stabilize the vaccines? While most vaccines can be found mercury free good luck at finding one that is aluminum free. I just think the normal immune system has enough difficulties with this let alone one that has been through so much. Plus all vaccines contain "living" cells some animal some human. All these living cells could mutate and cause reactions. WIth these all in one shots who knows which one causes the reaction? BTW anyone read the new research linking AIDS to the hep B vax???? AIDS is an autoimmune disease as well! Just interesting things. Okay off my soapbox - but I am curious as well.