Re-vaccinations after Stem Cell Transplant

bluerose said:

Very interesting
I am a 23 year survivor of nhl and I have long forgotten what kind but I was pretty sick. I was one of a bunch of the first autologus stem cell transplants performed for lymphoma actually as before that they only did bone marrow transplants for leukemia. Actually it was a bone marrow transplant, autologus, but there was some stem cell in it or something it was so long ago I find it hard to remember but know that it was in there. I really feel that that is what saved my life though and gave me this longevity.

I find it interesting you talk about vaccinations though. What are they? Do you mean re vaccinations for childhood diseases or is this something different? Reason I ask that is because I remember way back then they were talking about whether or not we needed to be re vaccinated since our immune systems had bottomed out and we were basically starting all over but for me anywho they never did it. Would be interested in knowing what you mean by that?

Treatment today sounds different from when I had my transplant. I have many side effects from the treatments and I have an issue with doctors who say 'go and live your life' without going into a deeper talk about watching for possible side effects of harsh treatments like transplants, down the road, they might happen and they may not but you still need to have the talk with your doc about the possibility. Hopefully with the new ways of doing transplants this big side effect issue will be reduced or done away with completely but I have talked to enough people who have had their transplants some for years and other more recently and they all seem to have some residue what I call 'collateral damage'. I am not a doctor or therapist or nurse or counsellor, I am a 23 year surivor who has experienced some of this. Again, we are all different and so are our diseases in types and stages so your disease was no doubt treated much differently than mine. However like I said I have talked to many people who have had transplants and not one has had nothing left from it all.

I am just bringing this to your attention because I detected a frustration in your posting about you not feeling as you think you maybe should be feeling after being told to 'go live your life' and I want you to know you aren't alone. It takes time to get over a harsh treatment like a bone marrow transplant and fatigue is a big common side effect for sure. There can be others but I am not qualified to point any out for your particular disease. Just want you to know that side effects do happen and just know that you alone know your body better than anyone else and if you see a new symptom arise then you mention it to your doctor. If he or she blows it off and it persists, get a second opinion.

In the United States there are what they call late effects clinics for just this kind of thing, side effects from treatments down the road. One big one is the Lance Armstrong Long Term Effects program at Dana Farber in Boston. I know you have just had your transplant and hopefully you will not need this but already I can see that you are not feeling validated in how you are feeling and I would rather you know you aren't alone in this type of thing right from the beginning and get you to someone who will take your medical and emotional aspects of this journey seriously and in a validating way.

Being postive all the time? That's not realistic. Another of my pet peeves in all of this. A cancer diagnosis is serious. Period. People worry who have been diagnosed. Period. People think of their futures. Period. People will have concerns. Period. People should be able to express these concerns and issues without fear of invalidating comments by the medical community and those around us who aren't being mean - they just don't know better. I believe there is alot of work to be done in this area of allowing cancer survivors to voice their down times as well as their positive times. I am not saying positivity isn't important cause it is and so are great movements who promote that but in all of that 'rah rah rah you can do it' I think a little invalidation has accidentally happened in making survivor sfeel they are less 'brave or positive' about their disease if they feel down at times and even hopeless. If either of those two emotions last too long then of course help is needed and counsellors are great for getting us out of emotional ruts if we can't do it ourselves.

This site is great for being able to express our feelings freely, the good the bad and the reflective thereby validating ourselves along the way which is a very healthy thing.

I am considered cured because of the bone marrow transplant and I am sure you will be able to sit here 22 years from now and help others through the process.

Remember, you know your own body better than anyone else so make sure you hook up with doctors who will validate that.

All the best.

Blessings,
Bluerose