TERRIFIED to undergo auto stem cell transplant!!!!!!

carrie_b

I am day 37 and doing great!
Hi Natalie,
just wanted to know how you are doing, if you have a final date for your SCT to begin. I am now day 37 of my auto SCT and it went really well for me. I was gone from home for a total of one month...the week before my 'birthday' with the treatment and then 3 weeks following. I just had my discharge appts last week. I was in the hospital for one week total. On day 4, I had a fever and they admitted me and treated me with antibiotics. I only had nausea a few times because I was really good at preventing it with the meds they prescribe. All in all, I only threw up three times and it wasn't bad! I did have mucositis but it was really only bad for 3 days and it seemed quite manageable. I am still getting my taste buds back and am tired alot, but over all I was surprised just how doable the whole things was. I know it is different for everyone.

The worst part was being away from my family but it was also very reassuring when I saw what happened when I was away....they were fine! I have two teenage daughters with very busy schedules and my father stepped in to help my husband pick them up from activities and take them places. Our wonderful church family delivered food. My husband was relaxed and did above and beyond in caring for them. My worries were unfounded and I love knowing that although they missed me, they were well taken care of.

Hope to hear about your journey soon!
Carrie

COBRA666

STEM CELL
Natilie, what type of nhl were you diagnosed with? this make a determination for stem cell. john

DennisR

Hi Natalie,I had an
Hi Natalie,

I had an Autologous Stem Cell Transplant in Feb,2009 for a recurring NHL cancer after 8 years. I also had surgery and an R-CHOP regimen for 6 months. Everything was fine until the recurrance and, like you, I was informed that once the NHL recurs after the R_CHOP treatment the odds are that it will continue to recur with even shorter intervals between episodes. Hence, I opted to do the Stem Cell Transplant which gave me similar odds to those you have been given.
I am a 68 year old male, well past the cut off age for receiving a transplant, however I surprised all the Doctors and recovered very rapidly, though I must admit, it was a very frightening and difficult experience and I very nearly backed out of the treatment altogether and just went home.
It's been a little over a year now since the transplant and I'm doing very good, there's no evidence of any more cancer and I'm rapidly regaining my strength and stamina....amusingly enough, my hair all grew back dark brown, like it was when I was your age, and is still dark brown today. I was nearly all grey when I began the treatment.
I understand your fear and anxiety regarding the treansplant, but given your age, and the type of cancer you have, I would personally recommend that you undergo the treatment since it will give you the best odds of defeating your disease. I know two other patients that had NHL, and did the transplant at the same time as I did, we all survived and are doing well, I keep in contact with them and compare our progress.
I'll keep you in my prayers, (this is very important during times like these), and pray that you make the best decision for yourself, your family, and your friends.
Please keep us informed, and if you hqave any questions, please contact me, either here or through private messaging.
DennisR

JoanieP

natalie14 said:

Right now I am prepping to
Right now I am prepping to have the BMT which will be sometime in early June maybe July. Currently I have just completed my first cycle of ICE and will be going probably (depending on my levels), for my second round of ICE next week. I am amazed and how well I bounced back after ICE. After my second round of ICE they will give me scans to see if it has put me into remission. Then the work-up stage will start, placing the port, harvesting cells, etc. The final and most dreaded stage is the in-patient 3-week stay for the actual transplant/high dose-chemo/total body radiation. After the 3-week stay, I have to stay at a nearby hotel for 2 weeks to let my blood levels get higher since I have school-aged at home. I have somewhat began to wrap my mind around this whole thing, but it honestly does scare me. What we have to remember, is that we are going for a CURE! Not sure statistics he gave you on the transplant being successful, but either way we are blessed to have that option! Long-term remission or cure, both are every reason to dive into this and fight. Putting things into perspective is important. Weeks of chemo, doctor's appointments and then a month for the procedure, then a few months to build yourself back up is really only a short amount of time out of our lives. I wish you the best of luck and prayer is the best tool for guidance and support....this site is amazing as well. Please keep me updated! Blessings, Natalie

prayers
Natalie, when is your transplant? I want to pray for you a lot on that day. I know you will be fine. I never had one but you have that beautiful daughter and boys who will be wating for you to come home. Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and HE will direct your path. Love and prayers Joanie

Aime

whatdoyousay said:

transplant
Hi Natalie, My sister had a stem cell transplant, and I was her donor. She HAD both hodgkins and Non Hodgkins Lymphoma, or what they call grey zone lymphoma, very rare. It was in her bones, and they gave her 30% chance of getting rid of the cancer, but she did it, and was able to get a transplant. She is at day 40+, and is doing really, really well(maybe home by day 60.) She is 33, so young as well. It is not an easy journey, but it is one that you can get through. There are scary moments, when you question every headache, nausea, blood work....... She had to do blast chemo before transplant, which was very harsh. The road after the chemo, then transplant is not easy, but slowly gets better. YOU CAN DO THIS!!!! She has a 9 month old baby, and is determined to get home to her as soon as possible. The transplant was a complete success, and she has no evidence of cancer at all!! Please know that there are so many here, on this website and chat room who can help you get through this. I hope and pray for your strength and courage in your fight. Aimee

Love what you wrote....

Our son 28 is to undergo sct shortly...sister is a perfect match but we are still scared to death...should go well but we are human with fears and concerns just like any normal person. We trust God to bring him thru with perfect health....we are just parents...it's all the unknowns...such is life...trusting God...

 

PBL

Aime said:

Love what you wrote....

Our son 28 is to undergo sct shortly...sister is a perfect match but we are still scared to death...should go well but we are human with fears and concerns just like any normal person. We trust God to bring him thru with perfect health....we are just parents...it's all the unknowns...such is life...trusting God...

 

Welcome Aime. Sorry you need

Welcome Aime. Sorry you need to be here. You will find plenty of knowledgeable and kind people for support and advice.

However, this thread is seven years old, so you may want to start your own, and maybe give some more details as to precise diagnosis (Hodgkins or non-Hodgkins + type...).

Wishing you and your son the best possible outcome.

PBL

SGAGuy

Hello. New here. The VA Dr's are recommending I also get a sct

I was diagnosed with mediastinal mass which was biopsied and resulted as diffuse large B cell lymphoma with possible Hodgkins lymphoma (dbl expressor) in Feb 2017. exam demonstrated a large 8 cm anterior mediastinal mass with multiple associated enlarged mediastinal lymph nodes. On my first PET/CT: There is a significant amount of increased FDG uptake throughout the previously noted large anterior mediastinal mass and within the enlarged metastatic nodes in the mediastinum involving the prevascular and paratracheal regions. There is a small avid node in the left anterior perihilar vs retrocardiac region with SUV max 7.43.

I was listed at stage IIA. I did 6 rounds of R-CHOP.  After 2 rounds of R-CHOP the 8 cm mass was down to 4.5 cm. 

After the 6th round My PET showed: The mediastinal bulky adenopathy on the prior exam has significantly decreased. There is residual irregularly shaped nodular lymphadenopathy which measures 3 cm in diameter and has faint radioactivity with SUV max of 3.48, previously 7.43. There is also a small left lower cervical/supraclavicular node. with SUV max 6.19.

Today I got the results of my PET from this month: The mass is 3.1 X 1.6 with a SUV of 2.9 and no other SUV of any of the previous nodes showing activity. My Dr, said the mass is just fibrious tissue and at this time is not cancerious. 

Now the VA Dr's want to do a sct. The major problem I have is my wife died in May this year and I am alone except for my 4 dogs. Is the sct somrthing I need or preventive? Is gene therapy or immno therapy another route? 

po18guy

This thread is 7 1/2 years old

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