Advice on upcoming stem cell transplant

EHB

I am new to the site and have read through many posts in this thread. Everyone here is so supportive and nice, it seems like a nice place to be.

My father was diagnosed in January 2012 with Non-Hodgkins diffuse large B cell lymphoma. Upon diagnosis, it was pretty severe. Stage IV, but negative in bone marrow. Mostly in liver and spleen. He started R-CHOP and after 3 of 6 treatments had a PET scan. Doctors said he was in remission, although his thyroid was "lighting up", but all signs (apparently) pointed to thyroiditis. He had it biopsied and it came back benign. He continued his 3 other treatments. In July he had a routine PET scan that showed more activity in the thyroid. It was surgically biopsied and came back as the same lymphoma. So was he really in remission? Doctors say yes and that it reoccured, I say no that it never went away. Fine needle biopsies are known to produce false negatives. Anyway, not the issue anymore. So the next step is the stem cell transplant.

With all that being said, I have 2 major questions:

1) Any advice on how handle the transplant and what to expect that maybe doctors don't think to mention? (from a patient's perspective and from family perspective)

2) His oncologist said that there is not a "maintenance" treatment, yet we know a woman that had one years ago and I see you guys speaking about it (Rituxin). So anyone out there that had duffuse large B cell and used Rituxin as a maintenance?

Oh man, I am long winded. I hope everyone read though this to help me out.

-E

coachmike

Hello
Hi E

I had diffuse large b cell stage 2. Did chemo and then there was one small spot that still lit up. Decided to go with an auto stem cell transplant on June 12th. Just found out last tuesday that I am in remission! It is a difficult process but its very doable. The hardest part for me was the restrictions and certain level of isolation following the transplant. If you have any specific questions i would be more than happy to anser the best i can.

EHB

coachmike said:

Hello
Hi E

I had diffuse large b cell stage 2. Did chemo and then there was one small spot that still lit up. Decided to go with an auto stem cell transplant on June 12th. Just found out last tuesday that I am in remission! It is a difficult process but its very doable. The hardest part for me was the restrictions and certain level of isolation following the transplant. If you have any specific questions i would be more than happy to anser the best i can.

Coach Mike,
That is GREAT to
Coach Mike,

That is GREAT to hear!!!! How wonderful!! God, there is no better feeling than that, I'm sure.

What do you mean restrictions?

Did the harvesting cause you any side effects?

I keep reading that some people ate ice chips and popsicles while the chemo was being administered to help prevent mouth sores. Did you do this or experience mouth sores? He got one briefly on his very first chemo, but never again after.

Did you feel the worst right after the chemo? If so, how long did it take you to start feeling better?

Did you push yourself to stay as active as you could while in hospital? I heard that may help with how quick you bounce back.

Did you get have vomiting, nausea... and all that fun stuff?

How long did you have to go with NO visitors?

Ahhhh thank you so much for offering to answer questions. I feel the more armed we are with info, maybe it will ease a tiny bit of stress.

coachmike

EHB said:

Coach Mike,
That is GREAT to
Coach Mike,

That is GREAT to hear!!!! How wonderful!! God, there is no better feeling than that, I'm sure.

What do you mean restrictions?

Did the harvesting cause you any side effects?

I keep reading that some people ate ice chips and popsicles while the chemo was being administered to help prevent mouth sores. Did you do this or experience mouth sores? He got one briefly on his very first chemo, but never again after.

Did you feel the worst right after the chemo? If so, how long did it take you to start feeling better?

Did you push yourself to stay as active as you could while in hospital? I heard that may help with how quick you bounce back.

Did you get have vomiting, nausea... and all that fun stuff?

How long did you have to go with NO visitors?

Ahhhh thank you so much for offering to answer questions. I feel the more armed we are with info, maybe it will ease a tiny bit of stress.

Answers
You cant come into crowded places for quite somethime, normally its the first 100 days of the transplant. During the 100 days your body is rebuilding its new immune system and you can be at risk for infections. However, i for example was released from restrictions on day 70 because I guess I was lucky and my levels and immune system stabilized quicker.

Harvesting is a peice of cake, didnt feel anything at all

YES! Your treatment is called BEAM, on the seventh day you get Melphalan. It takes bout 1 hour to infuse in your body. This one is the one that you are to eat ice chips during and the the thirty minutes after. This is the chemo that really attacks your mouth and digestive track.

You start to feel the chemo two or three days after its done. Everyone is different and its hard to predict what you will feel

I was lucky and didnt have any side effects other than diareha for couple of days

Always had visitors

THE MOST IMPORTANT THING! Stay active in the hospital, dont just lie int he bed You must always try to get up and walk around. Even if its just a lap or two around the hall its a huge plus for you. I am a firm believer that this helps you get out quicker and helps you recover quicker.

The procedure is overwhelming but very very doable. I hope I have helped answer some questions for you and if you have anymore please dont hesitate to ask!

EHB

coachmike said:

Answers
You cant come into crowded places for quite somethime, normally its the first 100 days of the transplant. During the 100 days your body is rebuilding its new immune system and you can be at risk for infections. However, i for example was released from restrictions on day 70 because I guess I was lucky and my levels and immune system stabilized quicker.

Harvesting is a peice of cake, didnt feel anything at all

YES! Your treatment is called BEAM, on the seventh day you get Melphalan. It takes bout 1 hour to infuse in your body. This one is the one that you are to eat ice chips during and the the thirty minutes after. This is the chemo that really attacks your mouth and digestive track.

You start to feel the chemo two or three days after its done. Everyone is different and its hard to predict what you will feel

I was lucky and didnt have any side effects other than diareha for couple of days

Always had visitors

THE MOST IMPORTANT THING! Stay active in the hospital, dont just lie int he bed You must always try to get up and walk around. Even if its just a lap or two around the hall its a huge plus for you. I am a firm believer that this helps you get out quicker and helps you recover quicker.

The procedure is overwhelming but very very doable. I hope I have helped answer some questions for you and if you have anymore please dont hesitate to ask!

So did you actually get the
So did you actually get the mouth sores, or did the chewing of ice totally prevent them? He is going for all his testing (heart, etc) on Tuesday so hopefully everything comes back ok so that the date of admission into the hospital doesn't change.

This may sound silly, but I honestly don't know... did you have to get all your immunizations all over again? Since your immune system "clock was reset", so to speak?

When he was first diagnosed and was very ill, "normal" things happened that we didn't know were "normal" and we were terrified. Such as getting re-admitted for a fever (low white cells)and then neededing transfusions,etc. So I would like to know about all the "normal" stuff that happens that maybe we aren't expecting. Keeping my Mom's, my sister's and my own stress levels at bay a bit would be nice.

I understand that he will probably need transfusions of sorts at first, etc. So if there is anything else you can think of that may seem little and insignificant, I'd still like to hear. I'm sure I will definitely ask you more questions when it comes closer. His date of admission is Novemeber 20th.

Hope you are having fun celebrating remission!!!!