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Auto Stem Cell Transplant (Questions)

amanda_33
Posts: 13
Joined: Dec 2011

Hi Everyone,
I recently finished my 8th round of chemo (for diffuse large b cell lymphoma) and then I had a pet scan. When I went to see my doctor to get the results he told me that I have residual mass left on my lung with an SUV of 3. We had previously discussed the posibility of an auto stem cell transplant and I met with a specialist. So, now my doctor wants me to meet with the specialist again and go ahead and begin the process for the SCT. I'm very nervous about having the SCT and am not sure that I want to do it. I never really discussed other options with my doctor, so does anyone know what other options might be avaliable? Also what types of tests or other requirements are there before being admitted to have the transplant? How long does the process usually take before being admitted to the hospital for the transplant? Thanks for all of your advice and knowledge. Amanda

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

A co worker of mines father went through the same thing and decided not to do SCT and he has been fine. I would complete treatment and wait it out and see. That's my own 2 cents

DadysGirl
Posts: 305
Joined: Aug 2011

Really? They say it's a great cancer to have since high cure rate well we found out its one of the worst to have if you don't get cured... How long has it been and do you know where he had left over cancer? How has his petsca's been... Getting better worse or remained the same?

DadysGirl
Posts: 305
Joined: Aug 2011

My dad had same cancer had much much higher suv uptake abdominal area 14 and 20 left over after 8 rchop... In two months they grew and now uptake of 20 and 31... Got ready for sct. Had two rice treatment still not in remission but doctor wants to continue with sct now not to do any further damage to liver... After rice suv uptake is now ~7. He had echocardiogram, liver biopsy you won't need this, pulmonary test and I guess they test kidney functions by blood work. Rice treatment is pre sct chemo... He had this 3 weeks apart... They then do petscan and if you have responded partially of are in remission they will give you the above tests and then start you in two shots / day for 4 days similar to neulasta shot this is called neuphrogen. Then they will check you WBC if enough you'll go in for stem cell harvesting... You'll have some bone pain probably 3rd, 4th day due to your bone marrow producing prep for sct. Controllable with pain med. stem cell harvesting can take 1-4 or 5 days... It took my dad 3 days to have enough collection... My dad's counts were low so had to delay a week... He will most likely be admitted to the sct unit Tuesday, for 3-4 weeks... If you don't respond to rice then they will stop rice and give another chemo called dhap. (I think). If they want to put you in remission b4 sct and you are healthy they may give you 1 or 2 more rice treatment. My Dad tolerated rice ok... Fluid build up is uncomfortable but diuretics help. Your blood levels go down a lot more platelets especially compared to rchop... But if too low they'll give transfusion... You also will become neutrophenic so need to be careful... We just avoided all fresh fruit vegs washed everything over and over again even utensils... He did okay though... Wishing you long healthy life... Let's keep each other in our prayers and thoughts... I wrote this in a hurry if confusing I apogee pls feel free to ask ?s.

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Not sure who the questions are for

DadysGirl
Posts: 305
Joined: Aug 2011

Hi they were to you diazr1 I'm sorry for the confusion...

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

The coworkers father is in remission but they were pushing SCT for some reason

DadysGirl
Posts: 305
Joined: Aug 2011

I see... My Dad never went into remission :(
I hope he will remain in remission for good... And considered cured eventually...

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

What does your dad have?

DadysGirl
Posts: 305
Joined: Aug 2011

Diffuse large b cell non hodgkins lymphoma
It's very aggressive, I hope and pray he gets through sct without complications and goes into remission and gets cured eventually, wishing the same for everyone else as well...

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Amanda,
You really need to schedule a time to sit down and discuss what "other options" you have with your doctor. It's fine to ask and hear what others have gone through and what was done for them, but bottom line, you need to hear from a professional..(your doctor) what is best for you, and all of the details about the procedure and course he/she wants to use for you. Every doctor is different, so tests that someone else had, may not be what your doctor will order for you. Have you gotten a second opinion? If not, then you might want to consider doing so, especially if you are in a position(non-emergency state) to take some time in making your decision. Rule of thumb for me is to NEVER agree to something..(form of treatment), until I've been counseled in detail what is going to be done. I have not gone through a SCT so cannot help with your questions, or share the experience. Just remember...what one goes through or experiences may not be the same for you. We are all unique with our cancer even if we seem identical.Please share back what you decide to do.
Much love...Sue (FNHL-2-3A-6/10)

GogolBordello's picture
GogolBordello
Posts: 11
Joined: Apr 2005

I had mine April 26th 2001, and I am happy to report I have been in remission since.
I did pretty good, I had pneumonia just prior to my transplant and for many years after I got it quite frequently, I had shingles in 2003 and that was "fun." I don't think it is normal to expect the complications I had for a while. I had high dose and radiation right before my transplant. I think of all the long term side affects Vincristine did me in the worst and I can't remember which one it was, but my thyroid was affected by it. Also the steroids didn't get along with me. I had joint, muscle, and nerve damage issues, had to relearn how to write, walk, and all sorts of tasks. Due to complications with my left leg I was close to having it amputated, still don't grow any hair on it, it's a little swollen, and stained red like a jelly fish sting. I could go on and on with all sort of crazy stories, the likes of which I'm sure many here have heard or maybe not.

Honestly the joy I feel for being able to enjoy life outweighs any trouble I've had. I had Stage 4b T-Cell lymphoma (it was argued that I may have also had an unidentified type of leukemia, most likely ALL by some docs since I responded to the chemo that treats that better then the typical run for NHL) and was told to go home and enjoy my family many times when I was still in treatment. When it spread to my bone marrow I was given a 5% chance.

Even with all that in 2004 I started working with the same trainer I had in HS for powerlifting, and was able to squat 600 lbs no assistance for 2 full sets, that beat my old top of 550 lbs. It's all about the attitude, and I'm not afraid to say this giving it over to G-d, Psalm 46:10 "Be still and know that I am G-d." If you look at the Hebrew on that and study your understanding of that "simple" be calm statement will change drastically. Be still is really to surrender, and the name of G-d used there means God the creator of the universe. http://www.hebrew4christians.com/Meditations/Be_Still/be_still.html

I don't know about b cell that much. My choices were laid out by the doctors choice A, continue chemo and rads that will just hold it off, choice b, take a chance with much stronger radiation, high dose chemo, and Auto stem cell trans and it could cure you.

Things to expect, your mouth with hate you skin basically falls out and a lot of cells die and regrow it's pretty crazy. When you get your cells back prepare to taste this creamed corn flavor in your mouth, and people will smell it even (I think) have some hard candy. I had some killer rad burns, I didn't have total body, just a few specific tumors and lymphs were hit. I know it was painful and not easy, but for the life of me I can't recall that time very well in regards to after affects. I was surrounded by friends and family, and that is what I remember, being loved and encouraged. I can ask some of my family and get back to you.

sorry I was so winded hadn't thought about a lot of this in a while. Let me know if you have any specifics.

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