Non Hodgkins Lymphoma Success

bluerose said:

Welcome to the site rh7rh7
First let me congratulate you on your cure. Wonderful to hear that. I am sure you and I can relate on many levels, some of which unfortunately are some side effects of the treatments although of course I had total body radiation as well in the transplant and CHOP was before that.

On the internet there is a site called ACOR which is the American Cancer Online Resource group and they have a ton of information on every kind of cancer plus a long list of resources for long term and late effects of treatments. They have a long term survivor group there as well.

You can also google Late Effects in Long Term Cancer Survivors and I guess you would be considered a survivor of childhood cancers would you, or adult? Reason I ask is that you have to look at the which group they are talking about in late effects because late effects of those diagnosed as children and treated when they were kids is different from treatments as adults. To note, only go to reputable sites like Mayo Clinic or browse this site or ACOR as I said. Other cancer hospitals can be helpful too like the one in Canada in Toronto called Princess Margaret. I live in Canada and was partially treated there. They have a great site called Caring Voices and if you go there and look around you will see that they have actual online general meetings for online survivors/caregivers on a variety of topics. Google Caring Voices and you will get to the site and have a look at the meetings for the month. Anyone can attend and the leaders of the meetings are nurses who work in cancer care and there is an oncologist who comes in about once a month to chat too. The meetings deal with radiation treatments, chemo, side effects, emotional issues. Cancer is cancer no matter where in the world you live so check that out too.

In the U.S., not sure where you live there are what they call Late Effects Clinics that deal specifically with long term effects of treatments, most are for those who were diagnosed and treated as childrern. If you want a late effects clinic that deals with treatment on adult patients you can get in touch with The Dana Farber Institute in Boston and in particular the Perini Clinic that deals with late effects for those who were treated as adults. They will no doubt put you in touch with a nurse practioner who will answer some of your questions.

Back when we were diagnosed and treated we weren't validated when we complained about after pain and the like but it's different today because time is telling doctors that hey we are still around and we have issues too. This site is very helpful as well in supporting and helping to validate your concerns and issues, it's a great comfort to many. Wish I had this site when I was in treatment. Also check out the chatroom on this site, there aren't too many instant chat sites on cancer that are clean and supportive. Admin takes care of any issues that may arise in a speedy fashion, it's quite good really.

Anywho I wish you all the best. See you in chat at some point I hope.

Blessings,

Bluerose

bluerose said:

Hello Cat
Thanks for you nice comments in reply to my posting. I am happy to hear that you are well and got through your treatments as you did.

Yes it was interesting 20 years ago in cancer treatment but exciting too with stem cells just starting to be introduced for my kind of cancer - to that point they only did bone marrow transplants for leukemia patients - not hodgkins patients but they do now. I also remember that when I was first diagnosed they didn't have good anti nausea drugs and that was not funny with chemo but flash forward 2 years later when the NHL reared it's ugly head again that they did have very good anti nausea mediations and that made all the difference in treatments for me for sure.

Think what they will have for patients in the next 20 years? Hopefully the answer to that will be A CURE for all cancers.

Take care.

Bluerose

catwink22 said:

Rituxin
Hi Linda,
I am receiving Rituxin which is a monoclonal antibody. Basically it's a manmade guided missile that marks lymphoma cells so your own immune system will kill them. I have had three treatments, one more to go and then a scan in July will tell me if it worked. It is also used with chemo but because I am not having the "B" symptoms (night sweats, weight loss, fatigue) my onc felt it wasn't necessary for me to have chemo. Keeping my fingers crossed!
Cat

razmataz said:

low grade b cell lymphoma just diagnosed
diagnosed via lymph node biopsy after double mastectomy. Am upset and not sure what is next.\

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