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No Radiation - 6 Cycles R-CHOP

Rio331
Posts: 7
Joined: Aug 2008

First and foremost, happy holidays to all!

I wanted to share some information with anyone who may be diagnosed with Mediastinal Large B-Cell Lymphoma. I was diagnosed back in April and underwent 6 cycles of R-CHOP. My first medical oncologist was holding off on referring me to a radiation oncologist, up until our last appointment. She was resigning and felt I should explore this option, since she would no longer be my oncologist.

Boy, to look back on the chain of events and share my story...I sure hope but one person benefits from this.

At first I was upset, because I felt we had "lost time". My husband and I were nervous, but we marched forward, right into the first doctor's office. She was awful...tapping her foot, impatient, didn't give eye contact...I just knew in my gut she was not the radiation oncologist for me, to evaluate my case. So I went through the system and got a second opinion...

It took a few weeks to get an appointment, but she was highly recommended and the top in her field. She was-- is-- AMAZING. She reviewed all of my history, from the bone marrow biopsy, first CT scan, and subsequent PET scans, bloodwork, etc., met with me for about two hours (1 hour with nurses, 1 full hour with her), and even reviewed my case with her partners and former colleagues at NIH. In the end, she decided not to pursue radiation treatment. This is key and critical, because I feel as though we 6-cycle R-CHOP folks are treading new territory...

According to her, all of the data from years past, recommending radiation treatment right after chemo for this specific lymphoma, were for those folks who received 4 cycles of R-CHOP, not 6. Apparently, the 2 extra cycles of R-CHOP (Rituxan, specifically, since it is targeted therapy for the CD-20 cancer cell) serve the same purpose as radiation would-- to zap away those vacationing CD-20 cells.

So there you have it. I encourage any of you with this type of cancer who responded well to R-CHOP (resolution of tumor early on...mine was gone after 2 cycles) to ask questions and really make sure you need radiation. Don't just get it "because". Explore your options, take the time...work with your doctors. Make the best decision for you. That decision may end up being to get radiation, but in the end you will get it because you are doing what's right for you based on your specific case.

I know the healing journey can be exhausting, especially as we inch our way to the last cycles of treatment. Hang in there...before you know it, you'll be saying that you are in remission!

Peace to all on the healing journey...God Bless!

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Happy Holidays and I am so glad your doing well. As you said "each patient is different" and gathering information and making an informed dicision is quite important. Its amazing when we find that doctor who takes time to read our medical files and spend time with us. I would bet many of us are quite fed up with "production line medicine". I had Difuse Large B-Cell Lymphoma. As it involved half my face from my sinus to my jaw bone I went through 6 cycles of Chop+Rituxin and 25 radiation treatments. As my Lymphoma was tracking along the bone and nerves in my face it was a race to beat the cancer before it entered the bone marrow. I had one month to rebuild my body between chemo and radiation. Anyway 5 years out I am still here. Christmas is always a good reminder for me as I finished my treatments on Christmas Eve of 2003. My face was quite burnt up but at least I was home to enjoy the holidays. Peace to you and God Bless Slickwilly

Rio331
Posts: 7
Joined: Aug 2008

Hi Slickwilly--

Thank you so much for sharing your story...and what a beautiful note of encouragement...5 years out and "still here". God bless you!

Yes...lymphoma is a tricky cancer, and while the type of cancer I had typically stays localized, not all lymphomas are this way. My godmother, similar to your cancer, had Diffuse Large B Cell Lymphoma which started in the throat/neck, but had to be stopped from spreading...she, too, needed radiation treatment. 19 years later...she's alive, vibrant, and cancer free. I am so happy to hear that your cancer didn't spread to the bone marrow...truly.

I feel fortunate to connect with you and others through these discussion boards.

Happy New Year!

brains
Posts: 2
Joined: Mar 2009

Thank you so much for sharing your story. I wish you continued good health. I have had one R-CHOP once and will do a total of 6 sessions every 3 weeks. Did you also receive 5 days of 100mg of Prednisone for each treatment? I found my reaction to Prednisone to be the most troublesome and I stopped it after the 3rd day. I do work full time and I am very fearful of my 2nd treatment side effects with the Prednisone. Can you share any wisdom with me?

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I stumbled across your message by accident today. What timing hey! I also took prednisone for 5 days after my chemo treatments. First I want to say I was not working due to the massive amount of pain drugs I was taking. I did not get sick during my chemo treatments and it would take 9 1/2 hours to get them into me. Now I will tell you what I had to deal with. The prednisone would keep me awake for 3 days. I wanted to eat everything in sight as it caused a ton of stomach acid. Muscles tightened and even after my treatments were done it took a few months to get things moving or stretched out again. But the bottom line is that I am alive and actually gained weight during my treatments. I would not stop anything without talking to your Oncologist. I lost my hair at exactly 2 weeks after the first treatment. I would take 3 baths a day after my chemo to soak the drugs out of my pours as my whole house quickly smelled like CHOP+Rituxin. And it felt so good on my aching bones. I will say that is seemed every bone and joint in my body hurt like hell. My memory was my first brain issue. Cooking was not a good idea and I was lucky I had smoke detectors. Just remember one thing here. Everyone is different and we can all have different side effects. When things get rough quitting is not an option or easy way out. Its easy to get self centered when we are in pain. But we have families or friends that care about us and we are not just going through treatments for ourselves. And if your in pain don't take it out on others. Find some coping skill or talk to me here. Don't be afraid to call your Oncologist's office if you have questions and you will proubly have many. Eating is a priority for rebuilding cells and to get your counts up for your next chemo. When your tired sleep so your body can rebuild. And stay away from sick people as your don't want to end up in the hospital with a fever. I'll be here if you want to talk or have questions. I am sorry you have to go through this. I'll be here if you have questions. Slickwilly

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Brains. I am sorry as I just looked at your page and realized you are a female. This puts a new twist on things as I feel women have to watch their diets even closer then men. Rebuilding cells after chemo is what this is all about. Being able to keep to the chemo schedule is important and none of us like booster shots as we develope a hate for needles. I had my own garden and my own uncontaminated veggies. I cooked chicken breast on my foreman grill. Sometimes I would do both and mix things together and make a stir fry. I cooked liver on my outside grill for lots of iron. I only drank 100% juices but stayed away from the ones that add acid to your stomach. I would recommend a farmers market with locally grown produce and veggies if possible. Remember that many foreign countries are using chemicals that are not allowed here. In other words I cleaned up myself internally so I had the best chance of fighting cancer. I'll be praying for you Slickwilly

mnovs3
Posts: 4
Joined: Mar 2012

I have the same type of treatment Rchop every 3 weeks. I just finished my 4th treatment on March 8th. I've been ridiculously exhausted. I can walk around for about 10-20 minutes and then my body feels as if I have just ran a few miles. How did you feel the 2nd half of your treatment? SOrry I'm responding to this discussion board, I can't figure out to send a message to some one.

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