my dad was diagnosed with Large B cell lymphoma a year ago, went through Chop and Rituxan and ultimately a stem cell transplant. Doctor just said Pet scan still shows cancer cells and told me there aren't many more options. Are there?

There are a number of other options if his cancer is refractory (meaning it's non-responsive to first-line therapy), but most of them involve other chemotherapy regimens, such as R-ICE, ESHAP and dose-adjusted EPOCH + rituximab. He might also consider looking into a clinical trial, since B-cell lymphomas get a lot of clinical and pharmaceutical attention because they're so common. The benefits of a clinical trial include being more closely monitored as a patient than he would be monitored anywhere else.

Claudia-
ESHAP and EPOCH are second-line chemotherapy regimens for large B-cell lymphoma, like RICE. Another term for them is 'salvage chemotherapy' which just means chemo that is given when the cancer is refractory and not responding well to first-line treatment. I assume his doctors chose RICE for a reason; there's no evidence that one salvage regimen is any more effective than any other, so I wouldn't expect doctors to now try ESHAP, and if that didn't work, EPOCH or some other regimen.

The only other thing I can think of is a combination of Rituxan and Treanda (bendamustine) that's getting a lot of attention over the last month or two for being as effective as RCHOP in treating B-cell lymphomas, but much less toxic, you can read about it HERE. While it's really only been explored in indolent lymphomas, I noticed at the clinical trials link at this web site that a study looking at Rituxan+Treanda in patients with relapsed or refractory large B-cell lymphoma was currently recruiting, meaning someone thinks it holds promise, you can at least see the study information HERE.

Ross

Claudia-
Another thing, you say that his PET scan showed some cancer remaining, meaning the treatment has not resulted in him being 'cured' or cancer free, but that isn't necessarily a terrible thing. I mean it's not preferred, but at the same time, it might not be a good idea to attack it with more chemo etc in the hopes of eliminating it completely. Maybe you can ask his doctor whether it's possible to manage his cancer, the way you would manage a chronic illness like diabetes; sure it means living with it and dealing with it, but it also could mean living. There is a tendency among doctors and patients to go overboard trying to 'cure' a cancer and in the process poison the patient when perhaps a lower, safer dose of chemo and frequent check-ups could manage it more effectively. Just a thought; the idea of cancer management is kind of a new one and some people have trouble imagining it, but if possible, it has its merits.

Ross

Thanks Ross, I am all for managing it if that is all is left to do. Doctor was very pesimistic and said he wouldn't expect my dad to survive even a couple of years as his lymphoma is very aggressive. My dad only understands a bit of English, so he heard what the doctor said, but didn't quite understand. I didn't tell him. I told him that there were just a few cells that survived high dose chemo, but that the doctor was going to try other treatments. I have also read about Zevalin and Bexxar. Do you think that is something that they could try? Would they be covered by Medi-Cal?

Claudia-
Right, management of an aggressive lymphoma would be much harder than an indolent one, I guess I'm just trying to offer as many suggestions as I can think of in the hopes that one will fly.

Regarding Zevalin and Bexxar, both of these therapies could possibly help your dad, although neither was designed to treat aggressive lymphomas, they were both designed for indolent or low-grade lymphomas and there are probably no published research trials showing them to be effective in aggressive lymphomas (doesn't mean they aren't, just that this hasn't been explored or proven). That would be less of a problem if the therapies weren't so expensive. Because they are so expensive, Medi-Cal has put in place some restrictions on them both, notably that the patient needs to have been diagnosed with relapsed/refractory low-grade or indolent lymphoma or an indolent B-cell lymphoma that has transformed into something more aggressive, and that was previously treated with rituximab'. It's possible your dad meets their requirements, but his doc would have to order it and Medi-Cal would first need to approve it-- I'm sure you know how all that works.

I hope your dad's doctor is willing to try other avenues; as is, he or she doesn't seem all that optimistic or enthusiastic. How old is your dad? And how is his health in general?

Ross

My dad is 66 years old and he feels very well considering he recently went through the transplant process. He is very hopeful and eating well. He looks and feels good overall. His doctor told me that what he saw in the PET scan is not good at all, but that he still wants to get a biopsy just to make sure that what he fears is correct, meaning the lymphoma is still there after the transplant. He said that after that, he would talk to me more about other options, but he did say that he thinks there is not much more he can do. We have decided to not tell my dad, just so he doesn't stop fighting just yet... I have another question Ross, my dad was never given radiation. Why do you think that happened? A lot of people with Lymphoma go through both chemo and radiation, isn't it?

Claudia

My mom has recently relapsed as well after going through many of the same treatments (mentioned above) over the past 17 years. Her cancer is diffused large cell (b) lymphoma and her oncologist is starting her on EPOCH next week. We asked him about Treanda/Rituxin and he said that it is and option; however, no one is sure how effective it is. Since the clinical trial has been going on for over a year now, does anyone know how successful it has been? Since it is less toxic, we would love to go that route if, of course, it is effective.

Also, my mom is sooo scared of having a stem cell transplant (she is 65). Her oncologist says it is the only to do to hope for a longer remission. How successful are these transplants? How dangerous?

Thank you!

Ross,

Thank you for the information. I will bring December report along to our appointment tomorrow.

Is there anything patients can do to prepare their body for the stem cell transplant? Our oncologist does not offer nutrition/whole body care and I personally believe there are at least some things we can be doing to get as strong as possible for this. However, I am not a doctor and am finding it hard to locate solid information on nutrition and diet in conjunction with chemo.

Also, I am new to this website and not quite sure how it works. Are you an oncologist?

Thanks Again!
-M

Ross,

There is a Phase II trial of Treanda/Rituxin (to treat DLBCL)going on currently. From what I could find, it looks like it has been going on for over one year already and set to "close" this summer. I was hoping to find some information on whether or not DLBCL patients have responded to Treanda. Do you think any results or preliminary data would be out there? (clinicaltrials.gov)

Hello MRey and Ross,

I spoke to my dad's doctor again, and he said that after reviewing the results of the Pet Scan with the radiologist they've concluded that they need to wait to confirm if the lymphoma is still there. He said that the areas that they both see in the Pet scan are too small to make a conclusion at this time, so he wants to repeat scans in a couple of months, and if the areas have extended, then, well, he is not giving me much hope. In any case, I have been reasearching on clinical trials and I found this ongoing trial with Bortezomib and Vorinostat, but it is currently on phase II. These drugs are being tested on refractory mantle cell and diffuse large b cell lymphoma. The current trial is going on in NY, but I spoke with the lead doctor, and he told me that they will be opening one at the City of Hope in LA which is close to where I live. Ross, do you have any info about these drugs? Do you think my dad should participate in a phase II trial? Do you know which phase is the Treanda trial at?
MRey, my dad just went through a autologous stem cell transplant, he was also very scared, but evething went OK. He felt really, really, really, sick for about one and a half weeks after the transplant, but he was at the hospital and well taken care of. He definetely said those were the worst days of his life, but he was brave and concluded that was one of his last options anyway. Don't worry, the doctors won't let your mom go through a transplant without making sure that she is well enough to go through it. It seems my dad's didn't work, but you never know, everybody is different, tell your mom, not to worry. If it is an autologous transplant, it is definetely not as dangerous as the donor transplant. Good luck and never loose the faith...

Thank you so much for you response Ross,

He feels good right now, and the doctor said that just to make sure, he wants to wait three months before giving him another scan, so we are hoping and praying, but at the same time I am reading and browsing just in case...I definitely don't want him to go to a trial before getting the results from the next scan. If in fact his last option would be a clinical trial, then we will probably ask his doctor about Treanda. Thanks so much for your information. I really, really, appreciate it. I'll keep you posted...

Ross,
Thank you so much! There is a lot of information out there about medical treatments, but not much (credible) information about what else the cancer patient can do to help his/her body stay strong and replenish itself. Personally, I am big into nutrition and can offer some advice. However, I do not what nutrients a patient undergoing chemo could use more or less of to help the body help itself.

Claudia,
It sounds like our parents are in the same boat. If this next round of chemo gets my mom into remission (and we are praying that it does), I hope to do to work with her on a "lifestyle makeover" focusing on reducing all toxins and creating an organic diet packed with cancer fighting power foods. I don't want to "go off the deep end" as my husband would say, but I do want to do everything we possibly can to keep her. :-) We'll be praying for you as well!

Thank you!!

MRey:
Regarding diet, have you seen the National Cancer Institute's Foods to Help with the Side Effects of Chemotherapy or an NCI publication called Eating Hints? I'd never looked at this material before. It looks pretty good, and I especially like the recipes that are specific to certain effects of cancer, such as weight loss, constipation, mouth sores etc. When you have a moment, if you haven't seen these pages before, check them out and let me know what you think. I'll probably try to adapt some of the information for the supportgroups site.

Ross

Ross,

Thanks for posting! I found it helpful and also found the link to NCI's Complementary and Alternative Medicine useful as well. I will definitely bring these along to show our oncologist, who did not believe me initially when I told him that the NCI actually has published information and diet and nutrition as well as homeopathic options.

My mom is still in the hospital due to a fever that occurred when received her EPOCH. The chemo is finished (all five days of continuous IV drip), but they cannot figure out what is causing the fever/mucus now.

Thanks,
M

There is a new drug being trialled called parp inhibitors, that may be worth a read about, as it is quite effective when treating Waldenstrom's Macroglobulinemia and B cell lymphoma. Not sure if its available to the public yet but he might be able to get on a trial?

Thanks,
D

the PARP inhibitors under investigation right now mostly are being tried against solid tumor cancers, specifically ovarian and breast cancers, although I did note a couple early phase studies involving leukemia and lymphoma, but they weren't very specific.