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Lymphoma is back after Autologous Stem Cell Transplant

moms_the_best
Posts: 7
Joined: Aug 2011

My mother has non-hodgkins lymphoma and had undergone CHOP two years ago. She had a relapse and went through DHAP. Doctors recommend her to do Autologous Stem Cell Transplant. The high dose treatment accompanying the SCT was quite tough and the whole transplant was completed in May'11. She was regaining strength until a month ago (July'11) and found out there was a relapse upon checking into hospital because of recurring fever and feeling weak.

Aside from blood tests, she had CT scan, and bone marrow test; the specialists confirmed that lymphoma is back because 'the blood is not behaving'. My questions is:
i) how often does relapse occur after stem cell transplants?
ii) why couldn't doctors find out problems with the blood from bone marrow tests before the transplant?
iii) hemoglobin and platelets are low, what kind of diets can we provide her to make her feel better? (we're eating Beets/Papaya-leaf-teabags already).
iv) another transplant will be quite tough on her, what are the other feasible options out there?

I'm trying to put on a strong face in the house but am feeling bummed out due to the recent events as well, please apologize for my venting.

-A worried son-

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi,
It's not necessary to apologize...thats what we are here for. I can't help you with your questions, as I've not had to deal with a SCT..(yet). The only thing I do know is recurrance can happen at anytime. I've asked my doctor when he thinks my FNHL will require new treatment, or possible SCT, and he says there is no way to know until symptoms such as tumors/fever,etc occur. I guess the best thing we can do is to eat properly, stay as stress free as possible, and pray. I'll keep you and your mother in my prayers. Please vent whenever you need too...someone will be here to help you through the hard times. You are a good son and your mom is fortunate to have you by her side through this. Take care and best wishes...Sue (FNHL-2-3A-6/10)..age 60

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I can't tell you about relapsing after transplant but I can say I hope not often. I am currently recovering from an auto sct this spring. So far I am doing very well, but I won't lie to you. The reality of possible relapse is always there, but like Sue says take care of yourself and do what's right.

For the diet on the platelets I can answer that....NO there is nothing we can do as individuals and diet that will make a difference. I asked the same question when my numbers were so slow coming back.

I wish I could ease your fears and frustrations, but can't. Just keep your prayers going and your hopes high. Positivity feeds positive!

Take care,
Beth

moms_the_best
Posts: 7
Joined: Aug 2011

Dear Sue and Beth,

Thanks for the prayers and suggestions.
Will definately continue to keep the faith and be a pillar of support for mom and family. Hopefully there'll be treatments that can alleviate the current situation, we're all waiting on more results and our doctor's next suggestions as he consults with more specialists these few days.

Take care and best regards~

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I agree with Sue. You are a great son. My life since NHL has changed. I was a sugar person but now really limit it. I eat mostly organic meat. Do not have floride treatments, try not to drink bottled water, I eat gouda everyday(according to a Onc on Dr. Oz) try not to be a control person and let things go and enjoy every single minute. Your mother is very blessed to have you as a son.

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I agree with Sue. You are a great son. My life since NHL has changed. I was a sugar person but now really limit it. I eat mostly organic meat. Do not have floride treatments, try not to drink bottled water, I eat gouda everyday(according to a Onc on Dr. Oz) try not to be a control person and let things go and enjoy every single minute. Your mother is very blessed to have you as a son.

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I agree with Sue. You are a great son. My life since NHL has changed. I was a sugar person but now really limit it. I eat mostly organic meat. Do not have floride treatments, try not to drink bottled water, I eat gouda everyday(according to a Onc on Dr. Oz) try not to be a control person and let things go and enjoy every single minute. Your mother is very blessed to have you as a son.

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I am impatient and have old, blonde chemo brain.LOL

bluerose's picture
bluerose
Posts: 1104
Joined: Jul 2009

I am a 24 year survivor of non hodgkins lymphoma and had an autologus stem cell transplant back when they just started to do transplants for lymphoma patients - prior they only did them for leukemia patients. Geez I'm old, lol, but happy to say that.

From what I understand one recurrance is pretty common for NHL after the first diagnosis so your Mom's right about on schedule with that but I can't answer your question as to why they didn't check the blood before the transplant. I am not a doctor and wouldn't try to second guess why they did it but ask them, you have a right to have your questions answered. The cancer may not have appeared before transplant, just don't know. They also might have seen it but decided it was still worth a shot to do the transplant anyways, you really need to ask them.

I think that I would get a second opinion though at this point. Just a different point of view maybe on what other oncologists would say and do. You never know. A transplant is very very hard on a person and depending on other factors like the patients age etc additional treatmetns on recurrance could be risky but not impossible. See about other opinions, you want to try it all before a decision I'm sure.

Also you can call other cancer hospitals for more info too. I don't know where you live but there are some great cancer resources out there. One is the Mayo Clinic and the other is Dana Farber in Boston. At Dana Farber they have an institution called The Perini Clinic that deals in adult survivors of cancer and their nurse practitioners are very good to talk with. You might try them too. There is also a cancer help line in the states, I think they have the toll free number on this site somewhere too.

When I was diagnosed I googled for the expert in my kind of lymphoma in my area and went to him, why not go to the best? You might already have that special doctor but just thought I would throw that in too if you hadn't thought to do that. All the second opinions might come back the same but at least you can say then that you tried everything. Get some help from family and friends in your search for more resources I'm sure they would be more than willing to help you.

I wish you all the best. You are a great son, can I borrow you? lol.

Hugs and blessings to you and yours,

Bluerose

moms_the_best
Posts: 7
Joined: Aug 2011

Thank you Joanie and Bluerose for the support, there sure is a lot of wisdom on this discussion board.

Re: 'Try not to be a control person and let things go and enjoy every single minute'
Yes; this is very true - I tend to overthink and be over-controlling; I'll try to take a step back and treat things as it is, while continue keeping the faith, support and do what I can. Tomorrow mom will undergo transfusion to bump up her hemoglobin/platelets, so hopefully she'll regain some strength after that.

I'm glad to hear the Bluerose is a 24yr veteran-survivor of NHL! Hopefully with new treatments and more specialists, the success rate for cancer will continue to increase.

I live in Toronto and mom does her transplant/treatments at Princess Margaret and Markham Stouville. The oncologists and most of the nurses were very supportive and understanding, I agree that additional advice will be of help and appreciate for the information about Mayo and Dana Farber, will send them some email and perhaps shots of the results (I make copies of results) if they need them.

Best regards and keeping the faith!

bluerose's picture
bluerose
Posts: 1104
Joined: Jul 2009

Hey, I didn't know you were from Canada. Me too, I am in Ottawa and was followed and my radiation protocol was done at Princess Margaret years ago. You are in great hands at Princess Margaret. Did you know that they have a website like this one online too? Yup, it's called Caring Voices. This is their website: http://www.caringvoices.ca/en/ They have discussion boards too but the great thing is that they have online meetings right from the hospital that you can go to online and get information from professionals at PM. Check their website and you will be able to see their meeting schedules and see if a topic is one you can make use of. It's a great site. Their chatrooms aren't used much though but the meetings are great. I attend them now and then. On Monday Aug. 8th at 11am a famous oncologist, Dr. Buckman who wrote that book 'Cancer is a Word NOT a Sentence' is hosting a meeting on that site. Just register on the site and have a read of all they have to offer. Lots of information and help there.

Have you heard of Wellspring in Toronto? It's close to Princess Margaret Hospital, just a couple of blocks away and is a cancer support group that is very very helpful and great for resources. Give them a call in Toronto and they will be able to send you all kinds of info and you can have a chat with them about your questions and they will send you to the right people closer to where you live perhaps. PM also has alot of great support groups and meetings that you might want to look into too when you are in town or maybe they have telephone support. Lots of support in Toronto.

I didn't realize you were in Canada or I wouldn't have bothered with the U.S. clinics but still there is something to be learned from any big cancer centre. Also the B.C. Cancer Agency has alot of useful information too. It is in Vancouver.

Keep us posted neighbour.

Blessings,

Bluerose

moms_the_best
Posts: 7
Joined: Aug 2011

Hi Bluerose,

Yes! We're from Toronto and PMH doctors are very knowledgeable while the nurses at 14th/15th floors (where SCT are performed) are very nice. I was really impressed and grateful during my mom's recovery after her auto-SCT. I checked the other website but seems this one is more structured and has more responses (thanks to you and a few others who are always active and helpful).

Mom had her consultation today at PMH and things could've been better; there are problems w/ the marrow after her SCT. Currently she is transferred back to MSH (I'm grateful for a very personal and compassionate oncologist there too) to follow up her case. We're looking possibilities of maintainance chemo but most importantly is to get her hemoglobin/platelets back to good levels first.

Thanks and take care~!
-mom's son-

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