Non Hodgkins Lymphoma Success

bluerose said:

Hi Joanie
Interesting, I had never heard that about vitamins and cancer or about the PET scans and radiation. Actually I have never had a PET scan ever. I don't know if they were even around during my treatments 20 and 18 years ago resp. They seem hesitant to use them and say that they use them only to follow cancer patients through treatments to see if they are responding to drugs but I know they are also using them in heart related matters as well.

I don't take Rotuxin, not sure what that is. My bone marrow transplant was autologus meaning they used my own marrow so maybe that is an antirejection drug, I don't know.

I had congestive heart failure during the isolation period of the transplant, nearly died right there, but I recovered but one of the cancer drugs damaged my heart they think and it has been a problem, I had to have an emergency pacemaker implanted because of the chronic and severe arythmias. I live near a world famous Heart Institute now and they have it calmed down.

I have what they feel are several long term effects from all the treatments so long ago including early osteoarthritis, nerve damage they think (having more tests for that in July), memory issues and some cognitive problems too which now they feel are related to radiation and chemo too - some chemo drugs not all. I have fibromyalgia as well and the fatigue is pretty hard to deal with. I haven't been able to work since I had the transplant, one side effect after another. Most are controlled with meds, I am on several for various things including morphine daily for my back problems.

But with it all I was able to be there for my kids as they grew up as they were just small when I went off for transplant, not knowing if I would be back since there is a chance of dieing during it (or was then), but next month my daughter is graduating from university and my son is into his new career so the treatments certainly worked. The docs consider me cured.

Thanks for asking about my story, hope it has helped you in realizing that today is a new day in treatment and today many live with cancer as chronic if not cureable. Yes there still are cancers that don't produce lasting results but hopefully we are close to finding a cure for them all.

Blessings, Bluerose

bluerose said:

Hello Natalie
As I think I mentioned before I am a 20 year survivor of NHL with the first diagnosis made in 1989 and at that time I had the regular CHOP chemo treatments and localized radiation to the abdomen and pelvis. They had taken the lump in my groin out and biopsied that and hence the diagnosis. They were sure they got it all. A year and a half later it came back in a lump under my left breast and that's when I opted for a bone marrow transplant as my thinking then was that the other two alternatives for treatments, for me made no sense. They were 'wait and see' which was not my kind of way of dealing with cancer and the other was to repeat the CHOP which hello, hadn't worked well the first time so the only thing left that they offered me was the bone marrow transplant. I wasn't crazy about the odds that I wouldn't make it through transplant but then again I had two young children and my thoughts were that without the transplant I wouldn't be around in 5 years for them so I felt I had to take the chance.

I prayed continuously for God to allow me to live to see my kids grow up and become independant and actually I had a healing take place in the hospital which sounds nutty to many people but it happened to me and I am no bible thumper I can tell you and was in no way even thinking of such an amazing intervention. But it happened to me and the cancer has never returned.

I was one of the first stem cell bone marrow transplant recipeints for NHL, before me they only did them for leukemia patients, well I don't know if I was the very first but in the first group that they tried the transplant for the NHL. Seems to have worked. lol.

It was no picnic back then. I had congestive heart failure in the early stages of treatment and nearly died from that but I didn't, had pneumonia about 3 times while in isolation too and the isolation was lonely but I had visitors and some could bring movies and the hospital provided tvs and vcrs then for the movies. Today I'm sure they do the same. The isolation away from my kids was hard but I was struggling the whole time in there so time didn't go slowly.

However having said all of that today might be a whole new day in transplants, autologus as I had as well, and I have never heard of ICE but I assume its the chemo before the transplant starts like my CHOP was. I don't know if the drugs are different too, I know that one of my drugs which was adriamycin did damage my heart and that is an issue I deal with today as well but you would have to go over possible side effects with your doctors ahead of time.

I think the bottomline is to look at your chances of survival without the transplant or by doing the 'wait and see' approach and then deciding from there for your own well being and that of your children. I can tell you that my prayers were always to allow me to live for my kids, til they became self supporting, and I do believe that this is the most powerful prayer there is, from a Mother for her children. Continue to pray that prayer and do it with the power of a Mother's love. I can tell you that that prayer does get through.

I was 39 when I went through transplant and I have friends who did better than me after transplant as they didn't have pre chemo and rads they docs think but you have to understand that everyone is different and I was treated many years ago, they might have much better drugs and treatments nowadays, I don't know. Ask your oncologists how autologus bone marrow transplants have changed in 18 years.

You know now that I think of it the CHOP wasn't before the transplant it was what I had when first diagnosed, sorry about that. Before the transplant I had a few shots of chemo before the transplant itself. Sorry about that. Memory issues are part of my side effects of the treatments, known to survivors and docs alike as chemo brain. I have many side effects as a long term survivor but the bottomline for me was that I did get to live to see my children grow up.

It's not an easy decision by any means but hopefully together with your oncologists who I hope you trust and have faith in you will make the right decision for you. Are you healthy other than the cancer?

All the best. Blessings, Bluerose

JoanieP said:

Thanks Bluerose
I appreciate you writing and telling me about your journey. I met two people in church this morning who had NHL. It is certainly a common disease. I go Wed. for my Rituxin which is a maintanence drug. No real side effects for me. You had your disease during the time of chemo making you sick to your stomach I am sure. I know it is a blessing to see your children doing so well. I have two children and two grandchildren. Today's serman was on not wishing for your time on the job to be over etc. It was on cherishing each moment. I am a teacher and we have 40 more days this school year. I am trying to take that to heart this week . The kids are 11 year olds and very hormonal:) I try to keep my attitude good and not go back to that place of anxiety and paranoia . After you had your transplant did any part of the NHL come back? Sorry I am rambling. I blame it on blonde brain and chemo brain. Take care. Talk to you again I hope.

dixiegirl said:

I'm here Joanie
I'm here lurking in the background honey. New puppy Sam is taking up a LOT of time and energy, but everyone here is never outside my heart.

I went for rituxan yesterday and I'm ok. Doc is referring me to a Lymphadema clinic due to some swelling in my armpit. At least he couldn't feel any nodes. I don't know what to think of this side effect since it's been a year since I had my biopsy. It boggles my mind.

I will try to post more often.

Take care,
beth