Re-vaccinations after Stem Cell Transplant

Hulsy
Hulsy Member Posts: 11
Today is Monday,January 17, 2011

I was diagnosed with stage 4 MCL in July, 2009 and started chemo treatment shortly after--just before my 60th birthday (yes, we raised 3 sons...all on there own and my husband and I were looking forward to some fun adventures.)

I had 6 rounds of mega-chemo (each time a week long stay in the hospital) This was followed by more chemo in March, 2010. I had an autologous stem cell transplant on March 4, 2010--I was told it was my 're-birth day.' In August of 2010 I had a complete hysterectomy (all was well) In March 2011, I reach the one year anniversary of the SCT and will start getting my vaccinations.

Now, here I am....looking to find a support group for Mantle Cell Lymphoma. I know it is a rare and scary thing. The doctors don't have a prognosis because my treatment was fairly new. I was told to "Live my life."

As I look back on my journey through chemo and treatment, I realize how sick I was. I just took it one day at a time and through the grace of God, have made it this far.

I think I am 'right there' with 60% of cancer survivors now....trying to get the worries out of my head and live each day with positive feelings. It's not exactly easy. I am doing some creative art classes at our local Gilda's Club and really enjoying it. I did not go back to work (office environment in a college.) I still tire easily and have yet to make it through a week of busy-ness. I am dealing with my "new normal" and doing pretty good.

I would love to be able to get a good night's sleep without the help of meds.

Also, I would love to hear from anyone who had a SCT and had the vaccinations....just wondering if there are any side effects from that.

Comments

  • allmost60
    allmost60 Member Posts: 3,178
    Rare Cancers
    Hi Hulsy,
    I found another lady who has the same cancer as you do on the Rare and Other Cancers board here at CSN....(about 5 groups below the Lymphoma board). Her name is Suki7. She is also looking for someone to talk with. If you go to that board her post is 5th from the bottom on page one. I hope this information will help and you will be able to connect with her. Best wishes to you..Sue (FNHL-2-3A-6/10)
  • allmost60
    allmost60 Member Posts: 3,178
    allmost60 said:

    Rare Cancers
    Hi Hulsy,
    I found another lady who has the same cancer as you do on the Rare and Other Cancers board here at CSN....(about 5 groups below the Lymphoma board). Her name is Suki7. She is also looking for someone to talk with. If you go to that board her post is 5th from the bottom on page one. I hope this information will help and you will be able to connect with her. Best wishes to you..Sue (FNHL-2-3A-6/10)

    Support here also..
    Hi again Hulsy,
    I didn't mean to send you off to another board...just wanted to point out a lady that has the exact same cancer as you on the Rare Cancer board. With that being said I am sure the support from all of us here on this board will also be very helpful for you. In my opinion..all cancers create the same anxiety and worry and even though we may not all have the "exact" same kind of cancer, we all feel the same emotions that come with having it. It's scary stuff and I for one will take all the help I can get to muddle through this cancer process. Please keep posting here, it will be good for your soul. I think I do remember some other people in this group with cancer similar to yours. Hopefully they will come on and help with some of your questions. Love, Sue (FNHL-2-3A-6/10)
  • bluerose
    bluerose Member Posts: 1,104
    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
  • Hulsy
    Hulsy Member Posts: 11
    allmost60 said:

    Rare Cancers
    Hi Hulsy,
    I found another lady who has the same cancer as you do on the Rare and Other Cancers board here at CSN....(about 5 groups below the Lymphoma board). Her name is Suki7. She is also looking for someone to talk with. If you go to that board her post is 5th from the bottom on page one. I hope this information will help and you will be able to connect with her. Best wishes to you..Sue (FNHL-2-3A-6/10)

    Mantle Cell Lymphoma
    Sue, thank you so much for the info. I left message for Suki7.

    I haven't figured out this system yet. Is there any way to email someone directly instead of posting on discussion boards?

    Thanks.
    Gayle
  • Hulsy
    Hulsy Member Posts: 11
    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

    Bluerose,

    Your posting made my day! Thanks.

    I am new to this support network. The reason I am just now looking into this type of thing is that during November, 2010, both parents died and we have been very busy taking care of business for that.

    So, now after 1 1/2 years of journey down the cancer road, and dealing with two funerals, my own needs are back on top of my list.

    I found another person dealing with MCL and posted on her discussion board, hopefully we can connect.

    Not sure I'll make it 22 years as a survivor, but am using every minute I have to help others on their journey. A good friend is having his first PET scan on Thursday and I've made plans to be there for him during the process (same morning my stepdad's ashes to be buried in Scotland.) Whew!

    The networking is awesome, the support I received from family & friends has been outstanding. The support and prayers are responsible for me being around today.....my docs have all been very surprised by my recovery and are very supportive of me. I have great docs and hospitals here.

    Re: vaccinations....yes, I am to get all my 'baby' vaccinations starting again in March...not the chicken pox vaccine. Since I have no real immune system at present, I have to be careful around our grandkids, newest one is 3 mos. old and I need to take extra care when changing his diapers. But, my world is so much better with the kids in it, I will take my chances being around them.

    We live in Michigan, it's pretty cold here now. I have recently started mall-walking for exercise and have made plans to do a 5 K evening country trail walk in July as a fundraiser for Leukemia and Lymphoma Society. I am excited to have a goal.

    Thank you for your comments. Everyone I come into contact with re: their journey, etc. is added to my prayer list.

    I hope things continue to go well for you. Do you know if it is possible to email people directly through this network?

    In total support,
    Hulsy
  • allmost60
    allmost60 Member Posts: 3,178
    allmost60 said:

    Rare Cancers
    Hi Hulsy,
    I found another lady who has the same cancer as you do on the Rare and Other Cancers board here at CSN....(about 5 groups below the Lymphoma board). Her name is Suki7. She is also looking for someone to talk with. If you go to that board her post is 5th from the bottom on page one. I hope this information will help and you will be able to connect with her. Best wishes to you..Sue (FNHL-2-3A-6/10)

    Posting private message...
    Hi Hulsy,
    I know you can do it, but I haven't done it yet, so I don't know what the process is. I'm sure others here have used the private e-mail thingy, so hopefully they will jump in and help you out. I added people as my friends, but never knew what that ment or what it consists of...ha! Got friends but don't know what to do with them hahaha! I am soooo not computer savy...have learned alot over the years, but need to learn a whole lot more. Hope someone tells you how to do it soon. Maybe Suki7 will respond, so be sure to keep checking back on that board...(but come back here also):o) Good luck...Love...Sue
    (FNHL-2-3A-6/10)
  • bluerose
    bluerose Member Posts: 1,104
    Hulsy said:

    Bluerose,

    Your posting made my day! Thanks.

    I am new to this support network. The reason I am just now looking into this type of thing is that during November, 2010, both parents died and we have been very busy taking care of business for that.

    So, now after 1 1/2 years of journey down the cancer road, and dealing with two funerals, my own needs are back on top of my list.

    I found another person dealing with MCL and posted on her discussion board, hopefully we can connect.

    Not sure I'll make it 22 years as a survivor, but am using every minute I have to help others on their journey. A good friend is having his first PET scan on Thursday and I've made plans to be there for him during the process (same morning my stepdad's ashes to be buried in Scotland.) Whew!

    The networking is awesome, the support I received from family & friends has been outstanding. The support and prayers are responsible for me being around today.....my docs have all been very surprised by my recovery and are very supportive of me. I have great docs and hospitals here.

    Re: vaccinations....yes, I am to get all my 'baby' vaccinations starting again in March...not the chicken pox vaccine. Since I have no real immune system at present, I have to be careful around our grandkids, newest one is 3 mos. old and I need to take extra care when changing his diapers. But, my world is so much better with the kids in it, I will take my chances being around them.

    We live in Michigan, it's pretty cold here now. I have recently started mall-walking for exercise and have made plans to do a 5 K evening country trail walk in July as a fundraiser for Leukemia and Lymphoma Society. I am excited to have a goal.

    Thank you for your comments. Everyone I come into contact with re: their journey, etc. is added to my prayer list.

    I hope things continue to go well for you. Do you know if it is possible to email people directly through this network?

    In total support,
    Hulsy

    Hey Hulsy
    Glad I could help, I figure if we all have to go through this cancer school as I call it we have an obligation to help those who follow us on that same path. Heck it seems horrific to think we learn so much along the way and then what, don't share that knowledge with others in the same boots? Not good. Besides that survivors have an intuitive way of wanting to help after they are on the road to recovery - it's intrinsic in most of us, that's for sure and I see it in you too. Good for you. Way to go.

    What do you mean you don't know if you will make it 22 years? Yes you will.

    Wow that is really interesting about the shots. I am seeing my GP for my regular monthly visit with her tomorrow and I am going to get her to ask an oncologist because I only have a gyne onc right now and I think a regular general oncologist dealing with lymphomas would be better to ask. I feel sort of abandoned this far into survivorship, I mean I still have a ton of specialists handling all my collateral damage but not in the oncology field.

    I just thought of something. I was mentioning that Canadian site to you from our leading cancer hospital in Toronto here and that they have meetings and sometimes with an oncologist, I think I will check the schedules there of the meetings and go to the next one to ask him about that today and whether I should have them.

    Anywho thanks for getting back to me on this.

    Welcome aboard the support train here on this site, lol. Hope to see you soon in chat too.

    As far as I know unless people post their email address on their profiles here I think you have to go one by one and ask those you want to correspond with off site for their email addresses privately. I could be wrong on that but I don't know of anywhere else you can get private email addresses on this site. Most people only give their private addresses out to select people they connect with and don't want it out there for anyone and everybody.

    Take care of you.

    Blessings,

    Bluerose