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Bone Marrow/Stem Cell Transplants Can Give You A Future

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am a 20 year NHL suvivor and I have been reading these boards now and again and one thing pops out at me over and over and I understand it 200% as I went through it as well - should I or shouldn't I have a transplant?

It's a big question with scarey statistics and scarey unsure days in treatment but one thing is clear to me - the transplant offered me a future, more specifically a future with my children. For each of us, by the time we have gotten to the point of considering a transplant, we have discussed the options with our specialists and family and are considering this option more than the others and I am just hear to tell you that when I started the tranpsplant my children were very young - 2 and 5. Today I look at my daughter who is soon graduating with her degree in her chosen field in a few weeks and she is engaged to be married. My son is climbing the ladder in his chosen field, both are now well on their way. And the transplant allowed me to be there for them on their ways to today.

I remember vividly watching my two children standing there waving goodbye to me, only 2 and 5, standing there jumping up and down as carefree children would wave goodbye to their Mom as she was going off to do the groceries- soon to return. In fact, I was riding off to have the transplant - would I return? The worst haunting moment in my life. However, I got through it and am here to tell you that without that transplant I would not be sitting here typing to you now.

It's an awful decision to have to make, with all the negatives that they present you with for your consideration, but I have to tell you that myself and many others have made that decision and have been blessed with a future.

I pray all of you will be found typing this kind of rsponse to others who will come after you in years to come, letting them know that you did it and they can too.

Blessings, Bluerose

miss maggie
Posts: 929
Joined: Mar 2010

Thank you so much for sharing your amazing climb on the ladder to recovery. I pray you should continue for many years of health and happiness.

I have no idea what a transplant is? But, in the event I should ever need one, I will certainly remembeer your words of encouragment.

God Bless Maggie

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Sorry that I wsn't clear, I meant a bone marrow transplant/stem cell transplant. After awhile you start abbreviating beyond decifyering, sorry about that. For many with certain types of cancers a stem cell transplant is one of the treatment options but it is a very rough treatment indeed and carries with it great risk.

Because of these great risks to this kind of cancer treatment many faced with the optioh go through hellish deliberations as to whether to proceed or not.

Take care and blessings to you and yours. Bluerose

miss maggie
Posts: 929
Joined: Mar 2010

LOL I might have sounded like a moron. I know what a transplant is, but I was confused as far as your dx. Thanks for the update.

You too, take care. And all my blessings to you also.

maggie

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Sheeesh, my memory and writing skills are fading I think. lol. I had Non Hodgkins Lymphoma first diagnosed 20 years ago, had regular CHOP chemo treatments and localized radiatioin to the groin area where the first lymphnode was found that was cancerous. A year and a half leter the non hodgkins lymphoma came back with the first sign being a lump under my left breast which at first they thought was breast cancer but it turned out it was not.

I had three choices for treatments then. Do another round of what I had in the first place (that made no sense to me seeing that it only gave me a year and a half of remission, or wait and see (not my style) and the last being a bone marrow transplant with total body radiation which is what I chose seeing I had a young family and wanted a chance at a cure or at the very least a long remission.

That's about it. Bluerose

miss maggie
Posts: 929
Joined: Mar 2010

I re-read your post from the beginning again. I know I don't know you, but you were so very brave. If you don't mind me saying, very proud of you indeed.

The side effects must of been horrible from bone marrow transplant, and radiation.

Thank you for your story and blessing to you and your family. Maggie

DennisR
Posts: 148
Joined: Sep 2009

My experience with Bone Marrow/Stem Cell Xplant pretty much mirrors Blue's with a few nuances. I also had NHL...the 1st time about 11 years ago which resulted in Resection Surgery to remove a very large tumor, followed by R-Chop Chemo Therapy. The Cancer went into remission for about 8 years then came back again in 5/2008.
This time I opted for a strong Chemo Treatment plan to shrink the tumor, followed by a Stem Cell Transplant. R-CHOP was no longer a viable Chemo Regimin because of the re-currance of the NHL, I guess they think the cancer cells have developed an immunity to the R_CHOP if it recurs and the treatments wouldn't be effective again.
The Transplant procedure was indeed a very difficult and frightening treatment beginning with Full Body Radiation for a week followed by a strong Chemo Cocktail that kills all the White Cells leaving you with no immune cells at all and very low red cell counts. Believe me, I questioned my decision to do the Transplant nearly everyday, thinking I probably wouldn't be able to survive the procedure.
I was very fortunate in that my cells began to regenerate within a week and I managed to avoid most of the deadly germs that were claiming other courageous Transplant patients nearly daily, including many that had become close Friends during the treatments. I became an outpatient only 3 weeks after the Transplant and just reported to the BMT Ward every morning for various transfusions and then went back to an apartment near the Hospital.
I've been NED since the Transplant, but continue to have a number of side-effects that can be difficult at times, Neuropathy, yo-yo-ing blood counts, fatigue, lack of stamina, etc but generally my health is doing well and I'm improving all the time.
Take Care, Friend

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for adding our experiences to the posting, good to have several survivors takes on things. I had CHOP treatment before the transplant and it was actually offered to me again as one option other than transplant but the R in your treatment I guess wasn't around yet when I had mine in 1989. I have heard alot about the R, retuxin or something?, and actually today on the new chat site Caring Voices there is a meeting at noon I think on radiation and I am going to ask them about this R. I know it's a chemo question but maybe they know what the difference is in transplants from when I had mine to now.

Also wondering about rad differences too, today and then. Wow you went home after only 3 weeks? I was in for 2 months but I think one reason I suffered the congestive heart failure (so had to stay longer), is because I had the CHOP on diagnosis and that started to weaken my heart as I am sure that I wasn't monitored for adriamycin as well as patients are now - they just didnt know I guess. You said you got to know people in your ward, heck I was in isolation and never got to meet anyone - only heard about one person who was a neighbour of mine actually didn't make it through transplant.

Like you I questioned having the transplant everyday when in hospital but in the end felt it was my best shot and guess I was right, for you too right?

I was going to ask you if you are experiencing any nerve neuropathy? Did you have vincristine in your chemo mix?

See ya in the room perhaps. Bluerose

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Hi Bluerose!
I read your postings and they continue to give me so much hope at this frightening time. I just cried while reading about the part where you were waving to your children..I dread that part like you wouldnt believe. What was the high-dose chemo like ..was it called BEAM? What was the radiation like? I was told it takes about 2 weeks from discharge of the hospital before being able to drive and do household chores. Hugs to you Bluerose for being such an inspiration for all of us and mostly your children!! You are so strong. Natalie

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Yup it was emotional, that scene of me waving goodbye to my kids and seriously the day you go, DON'T LET THEM WAVE AS YOU DRIVE AWAY. Don't do that to yourself, it was hell for me and I didn't even realize it would be as hard as it was so save yourself that little trauma scene if you can.

I don't like to comment on rad levels and stuff because my bmt was done 18 years ago on a recurrance and I know that some things in transplants have changed so what occurred for me may be old school now so best to talk to your docs about how things might have changed over that amount of time in transplantation. However the total body rads I had were creepy the way they did it but not painful or anything but afterwards I was drinking everything in sight and eating popsicles like they were going out of style - dehydration from the radiation they said was causing that. In my case, and this is just me remember that, they were keeping track of how much fluid I took in and then put out in urine but I really think someone forgot to do the math cause I was taking in more than I was putting out and it was this that led to my congestive heart failure I am sure.
When I went into congestive heart failure my cardiologist was screaming 'put her on diuretics IV NOW' and that should have been done before that point where I was in trouble. Now again, I don't know how they do it now and in isolation is where that happened to me and again I don't know if that's how it's done today. Most people don't go through what I did but no doubt, as they have told you, this is a high risk treatment or at least that is what I was told back then.

My point in telling you this is that you need to monitor yourself for weird symptoms if you have any during transplant - chemos and radiation - if you sense you are bloating after the rads then let them know right away so you don't retain too much fluid. Again I have to stress that today they might handle that part of it all totally differently I am just giving you a heads up from what I went through which might be prehistoric by now.

I know that they are using different rad techniques for prepping the body for the rads. They used saline bags to cover me completely so the rads hit every inch of me equally but I just found out from a radiation specialist that now they use sand bags instead as it gets even more even exposure. Whether they do that kind of rad protocol for everyone in tbi I don't know. Ask your physician about that.

Bottomline though, and I keep mentioning this for a good reason, everyone is different in how they might respond to any treatment so take in all the info you hear and research and file it in the back of your head so that you might ask all the right questions of your doctors but don't get into worrying about 'this may happen to me', cause odds are it won't. Yup transplants carry great risk but is the chance of a second chance worth it? with young kids? If there is no other promising alternative? Unfortunatley it's the tough decision we all have to make for our own situations.

It took me a long time to get back to chores and stuff but that was because of my extra damage and I have never been able to return to work but could raise my kids and I kept all my energies for that. That's the most important part of why I wanted to live anyways.

You continue to be in my prayers. Stay strong and continue to pray daily to be allowed to continue on to be there for your children. A Mother's prayer for her children's welfare I believe is one of the strongest prayers there is. I don't know if you belong to a church or not but even if you don't call churches and get your name put on their prayer chains, go to The Sisters of Providence website and put in a prayer request from the Sisters there (powerful Saint there I can tell you from personal experience). You can do it. Love, Bluerose

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