Radiation After Chemo - Mediastinal Large B Cell

Rio331

Hi there,

I just completed 6 rounds of R-CHOP...my tumor was gone after the second cycle. My oncologist referred me to a radiation oncologist for a consultation, although she mentioned big risks with radiation for the type of cancer I had. (Breast cancer, lung cancer, or thyroid cancer).

Since I am in remission and have no tumor, I'm not sure what there is to radiate...

Has anyone been in a similar situation, opted not to proceed with radiation? Pros and cons? I'm open to hearing it all...I'm in the "discovery" phase...performing my due diligence.

Many thanks!!

DusSpenSu3

Hi,
This is my personal
Hi,
This is my personal opinion only, but I have been treated twice for Stage IV, non Hodgkins lymphoma and my oncologists have never suggested radiation thereapy after chemo. The last time I was treated in 06, I had 6 rounds of RCOP and I too went back into remission. My personal opinion is less is better. Good luck evaluating all your options.

Rio331

DusSpenSu3 said:

Hi,
This is my personal
Hi,
This is my personal opinion only, but I have been treated twice for Stage IV, non Hodgkins lymphoma and my oncologists have never suggested radiation thereapy after chemo. The last time I was treated in 06, I had 6 rounds of RCOP and I too went back into remission. My personal opinion is less is better. Good luck evaluating all your options.

Radiation After Chemo (Thank YOU)
Hi there DusSpenSu3--

Thank you SO MUCH for your personal opinion...it means a lot. My gut is telling me "no".

Congrats on being in remission-- were you treated with RCHOP the first time around? Rituxan seems to work miracles because it's targeted therapy.

Have a beautiful weekend!!

DusSpenSu3

Rio331 said:

Radiation After Chemo (Thank YOU)
Hi there DusSpenSu3--

Thank you SO MUCH for your personal opinion...it means a lot. My gut is telling me "no".

Congrats on being in remission-- were you treated with RCHOP the first time around? Rituxan seems to work miracles because it's targeted therapy.

Have a beautiful weekend!!

Hi Rio,
I was treated twice
Hi Rio,
I was treated twice with RCHOP. Once in 1990-91 (18 months) and the second time in 2006 when I recurred and I had 6 rounds, once every three weeks and they added Rituxan. The first time they gave me Rituxan, I had a reaction (rigors, itching) so from then on, they just gave me IV benedryl before they started the chemo drip. I never had another problem. I had a great weekend, hope you did too.

hoping4acure

Wow I'm in the same situation
Hi,
I also have mediastinal large B cell lymphoma. After 2 cycles of R-CHOP my tumor was about 98% gone. I have had 2 more cycles since then and still have 2 to go for a total of six. My doctor is also reccomending radiation following chemo. Those are exactly my concerns (lung and breast cancer, I didn't know about thyroid). I haven't had a chance to discuss these concerns with my oncologist yet because I'm still getting chemo. He said that radition is more of an insurance policy against this coming back. Let's face it if there was one single cancer cell still there it wouldn't show up on a PET scan so the radiation is supposed to insure they are all dead. That is my understanding anyway. I am really interested in what others post. If you wouldn't mind answering I have a question for you. Did you have tonsil/throat/ear pain during your chemo? That is the thing that is really bothering me and just doesn't seem to ease up this cycle. Congratulations on your tumor being gone and for being done with chemo!

judamonster

hoping4acure said:

Wow I'm in the same situation
Hi,
I also have mediastinal large B cell lymphoma. After 2 cycles of R-CHOP my tumor was about 98% gone. I have had 2 more cycles since then and still have 2 to go for a total of six. My doctor is also reccomending radiation following chemo. Those are exactly my concerns (lung and breast cancer, I didn't know about thyroid). I haven't had a chance to discuss these concerns with my oncologist yet because I'm still getting chemo. He said that radition is more of an insurance policy against this coming back. Let's face it if there was one single cancer cell still there it wouldn't show up on a PET scan so the radiation is supposed to insure they are all dead. That is my understanding anyway. I am really interested in what others post. If you wouldn't mind answering I have a question for you. Did you have tonsil/throat/ear pain during your chemo? That is the thing that is really bothering me and just doesn't seem to ease up this cycle. Congratulations on your tumor being gone and for being done with chemo!

Radiation/ear pain
Hi, My Doc said the same thing. That radiation is like buying insurance so I bought it. I did have ear pain when I was going through chemo. I have been in remission since August 2nd.

Rio331

hoping4acure said:

Wow I'm in the same situation
Hi,
I also have mediastinal large B cell lymphoma. After 2 cycles of R-CHOP my tumor was about 98% gone. I have had 2 more cycles since then and still have 2 to go for a total of six. My doctor is also reccomending radiation following chemo. Those are exactly my concerns (lung and breast cancer, I didn't know about thyroid). I haven't had a chance to discuss these concerns with my oncologist yet because I'm still getting chemo. He said that radition is more of an insurance policy against this coming back. Let's face it if there was one single cancer cell still there it wouldn't show up on a PET scan so the radiation is supposed to insure they are all dead. That is my understanding anyway. I am really interested in what others post. If you wouldn't mind answering I have a question for you. Did you have tonsil/throat/ear pain during your chemo? That is the thing that is really bothering me and just doesn't seem to ease up this cycle. Congratulations on your tumor being gone and for being done with chemo!

Hello there,

Thanks for the open dialogue...it's great to hear all sides (radiation, no radiation), and we're all at different stages...very helpful. To hear from those who have gone the radiation route, and those who haven't. I suppose when it comes down to it, we have to do what is best for us...what risks we can live with and what risks we cannot. I'll be meeting with a radiation oncologist next week, so I definitely keep an open mind and share my experience with you.

Yes, I had throat pain (hard to swallow sometimes) and developed acid reflux/heartburn, but not the tonsil pain. It sounds like the other person experienced exactly what you are feeling. There seem to be remedies for the side effects, so if you keep an open dialogue with your oncology team, I'm sure they will guide you to some possible meds you can take to ease the pain while still on chemo. That's been my experience, at least.

I know where you're at-- just getting through chemo is the main goal for you right now. For me, it's all I could focus on...one day at a time, while still living life. My prayers are with you, and I am SOOO happy to read that your tumor is 98% gone-- it'll be completely gone by your next PET scan. There may be some scar tissue-- FYI. That's pretty normal, but you should see that subside/diminish with each subsequent PET scan.

Please keep in touch during your journey-- I'm happy to be here for you as a resource since we had the same diagnosis.

Have a beautiful day!

Rio331

judamonster said:

Radiation/ear pain
Hi, My Doc said the same thing. That radiation is like buying insurance so I bought it. I did have ear pain when I was going through chemo. I have been in remission since August 2nd.

Hi there, Judamonster--

Thank you for chiming in-- and congrats on being in remission! Are you done with radiation, as well? And were you considered in remission before radiation started?

I appreciate your sharing your journey with us!

verdugod

hoping4acure said:

Wow I'm in the same situation
Hi,
I also have mediastinal large B cell lymphoma. After 2 cycles of R-CHOP my tumor was about 98% gone. I have had 2 more cycles since then and still have 2 to go for a total of six. My doctor is also reccomending radiation following chemo. Those are exactly my concerns (lung and breast cancer, I didn't know about thyroid). I haven't had a chance to discuss these concerns with my oncologist yet because I'm still getting chemo. He said that radition is more of an insurance policy against this coming back. Let's face it if there was one single cancer cell still there it wouldn't show up on a PET scan so the radiation is supposed to insure they are all dead. That is my understanding anyway. I am really interested in what others post. If you wouldn't mind answering I have a question for you. Did you have tonsil/throat/ear pain during your chemo? That is the thing that is really bothering me and just doesn't seem to ease up this cycle. Congratulations on your tumor being gone and for being done with chemo!

same situation too!
The same thing has happened to me!! I am a 25 year old diagnosed last feb 2009 with Diffuse Large non-hodgkins lymphoma and after 7 months of Hyper CVAD regimen (RCHOP didnt work!), and a bone marrow transplant, my mediastinal diffuse large b cell tumor shrunk 99%! It was debatable if i should go for radiation because of the small area that may have live cancer cells still. My Bone Marrow Transplant doctor said I should go ahead and my Radiation Oncologist said it was my decision because it was too hard to tell if radiation was necessary. After talking extensively with all of my doctors I realized to go ahead with the radiation. I figured, I came this far, I can handle a few short weeks of radiation!! (which seems like it affects your body muuuuuuuuuuuuuuch less!) My doctor also explained that radiation is my insurance of hopefully ending it once and for all and GREATLY decreases chances of recurrence (which can be much harder to treat)

So I started radiation yesterday and so far so good! I'm back to feeling a little low on energy, and just a little bit of very mild chest discomfort (feels like there is a little bit of pressure on my chest) but it is really not so bad. It is personal preference in the end, but personally, I feel good that I am taking an agressive approach to this because it gives me a greater peace of mind that i did all that I can to treat this. I also remind myself that though we need to take future risks (breast and lung cancer, heart disease...)into consideration...what is more important is to take care of the issues in the present so that we can get to the future!! and by the way modern medicine seems to grow by leaps and bounds each year...who knows, maybe those ''risks'' will be taken care of in 20 years!

congrats and high-five for getting so far!!! and a big CONGRATS to EVERYONE on this site!!! we should alllll be incredibly proud for what we have gone through, what we have learned, what we have shared and how we have helped and inspired others!!!!

aramance

Radiation after Chemo Mediastinal Large B cell
I had a 9cm x 12cm large B cell Mediastinal mass 8 years ago,so those the treatment I did may be antiquated, but here goes...I had 12 rounds of MACOP-B treatment, which reduced my mass down to 2cm. They suggested radiation and I did it. It scars the area, (my mass, per all my CTs and PETs is now completely scar tissue, nothing more). I didn't have problems with radiation other than fatigue, since they were very precise with the pinpointing the treatment to the mass. I had 20 radiation treatments and have had no problems since it was done. As a survivor of this long, I say the radiation isn't going to make anything worse (and I say that from a Nursing standpoint) than the chemotherapy will/has done. Good luck with everything.