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R-ICE Not working; auto transplant postponed :(

KatMat
Posts: 62
Joined: Jul 2012

My husband got his PET scan results today and it showed significant increase in activity. I was a bit surprised because his PET scan 4 weeks ago showed a significant decrease. He was scheduled to auto transplant tomorrow but that's postponed (that's the word I'm using). He is in the hospital and getting a new chemo which I hope and pray gets it under control so he can go to transplant. The doc said if this new chemo doesn't work ther is nothing else to do. I am very afraid......

bulldog
Posts: 7
Joined: Oct 2012

Please hang in and try not to be too disappointed. My stem cell transplant was postponed a couple of times. They tried a few different types of chemo over the span of 10 months before they got it right and the cancer was at the point where they could do high dose and stem cell.

try to stay positive .
Bulldog

po18guy
Posts: 239
Joined: Nov 2011

DLBCL normally responds to Rituxan, and often to the Etoposide in ICE. But, cancers can be as individual as those who are afflicted with them. However, there is still some guesswork in diagnosing and treating. If you do not have a second opinion on both diagnosis and treatment, now would be the time to obtain one. Misdiagnoses are still made, and some treatment decisions could go the wrong way. Having an extra pair of eyes on your husband's case would be an excellent idea. I would consider having his case reviewed by a large, academic research and treatment facility, as the more and better experience they have against DLBCL, the better. A second opinion saved my life. Neither my primary physician, the pathology lab, or an oncologist thought I had cancer. Actually, I had about three months to live - but that was now four years ago, thanks to that second opinion.

miss maggie
Posts: 929
Joined: Mar 2010

Dear Kat,

What makes you think if the new chemo doesn't work, all is lost??? I know how disappointed you are in the pet scan results. Especially when hearing first there was a decrease in activity.

This site is so helpful and full of information. I am glad Bulldog responded that all is not lost, and how eventually his doctor's got it right.

Hopefully as each day goes by, you feel a bit better and hopeful. Not that I blame you for your worry and being afraid.

I am sending positive energy and prayers for your hubby. Love Maggie

hiccup (not verified)

Hi Kat,

I'm so sorry the PET scan didn't show progress.. don't let that doc tell you there is nothing else to do, there have got to be options. I have high hopes for you guys..

Sending good thoughts your way

anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

Hi Kat,
Like everybody already said don't give up hope, get a second opinion and always keep on fighting! Sending you positive thoughts.

Sincerely,
Liz

jimwins's picture
jimwins
Posts: 2019
Joined: Aug 2011

Hi Kat,

Just chiming in with the others here. Sorry there has been
increased activity. What is the new chemo he's getting?

We're here with you guys. Hang in there!

Hugs - Jim

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Kat,
Never give up the hope. I'm so sorry everything isn't going as well as thought or planned, but I'm sure his doctors will do everything possible to get his cancer in remission. This kind of news is so hard to take when it concerns someone we love and want only the best for. I will keep your hubby in my prayers and positive thoughts coming your way. Let us know how things proceed. Best wishes...Love...Sue
(FNHL-2-3a-6/10)

KatMat
Posts: 62
Joined: Jul 2012

Thank you all for your positive thoughts and advice. My husband is getting Rituxin and Medrol. 5 days of Medrol and 3 days of Rituxan. Then we he comes home he will get Rituxan 3 times a week for 3 more weeks. And return to Mayo for a PET scan. His blood numbers are slowly recovering. Hemglobin was 7 when he was admitted to the hospital and is now 8.4 (started therapy Thursday evening). Platlets were 54 and are now 105 so I take that as a positive thing. R-CHOP damaged his heart so they cannot give him high dose chemo right now. They hope that it will repair itself somewhat. They hope this will get the lymphoma under control so they can see where to go from there.

If anyone has any recommendation of a cancer place or doctor to contact for another opinion I would certainly appreciate it.

It is still hard to take and scary but one day at a time right. Mayo has the best doctors and I have faith in God to help us through this. He is 42 and is strong and we will fight this!

GJS's picture
GJS
Posts: 5
Joined: Oct 2012

I'm new on this site but I got a second opinion from MD ANDERSON in Houston, TX. They are ranked #1. Mayo is an excellent facility ad I have had good experiences there with my mom though it was not cancer related. I travel to MD for all my treatments and am doing R-EPOCH as an inpatient for 5 days. My 1st PET showed marked tumor decrease and I'm due for another PET in a week. I am fearful of the results as I know that the cancer can become resistant to treatment sometimes.I have no regrets re my decision to seek a second opinion at MD ANDERSON.

KatMat
Posts: 62
Joined: Jul 2012

Thanks GJS... I am going to do that. Nothing to lose.

I have come to really not like PET scans.

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