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Finished my R-CHOP 21, now what?

dtat67's picture
dtat67
Posts: 16
Joined: Oct 2018

I finished my R-CHOP 21 (6 treatments) for NHL in my sinus this last Thursday. My initial tumor had caused my right nostril to be completely blocked and loss of smell and taste. After first Chemo treatment I could breath, smell, and taste so I'm thinking things are going well. My initial diagnosis was Stage 1A with no lymph node involvement. I do however have some bone erosion above my teeth which I can feel with my finger - no pain or symptoms. My Oncologist has referred me to a Radiation Oncologist for consultation next week. I have as of yet had no scans/CT etc. Although the Hema/Oncologist has ordered a head,neck,chest, and pelvic with contrast and soft tissue neck. I plan on seeing the Rad/Oncologist and discuss before having any further scans - simply because I do not want to duplicate any further scans that are not necessary. 

My  question - my Hema/Oncologist said that he recommended that I have raditation becuase of the bone erosion. To complicate things I have only one eye (lost other to B gun accident at age 7) and the area affect is below my good eye. I wondering what are the questions/risks that I will face by having this radiation? I asked my doc and he said, "well, we want to make sure that their are no a single cell left" so that in 2-3 years from now you have a recurrance. Not having anyscans yet, I figure he is just assuming that the initial tumor is gone. I also said that well if I go see a radiation oncologist then I will have radiation - he replied well if you go to a barber you will probably get a haircut.

Like everyone I want to put this behind me - I feel like crap, have gained about 15lbs since I started treatment (not sure why except I didn't get much exercise at all during the treatment just wanted to sleep and eat I guess - seemed to always be hungry and tired.)

Any feedback as far as risks of having the radiation or lessons learned that I can use going forward. Of course I want to do what is necessary but kind of feel like I am a victim of a standardized treatment plan. 

Appreciate any comments.

Dave

 

 

 

 

po18guy
Posts: 989
Joined: Nov 2011

Which of the 50+ varities of NHL were you diagnosed with? Based on its location, it almost sounds like Nasal N/K cell lymphoma.

dtat67's picture
dtat67
Posts: 16
Joined: Oct 2018

Malignant cells express PAX-5, CD79A, CD20 (focal/weak), BCL-6 (diffuse), MUM-1, and BCL-2 (70-80%) while negative for CD3, CD5, CD10, and CD30. Proliferation rate is >99%. Not sure if anyone knows what this means but ......

po18guy
Posts: 989
Joined: Nov 2011

Well, the proliferation rate indicates that it is a very aggressive lmyphoma. The good news from all of the bad is that aggressive lymphomas are often more easily defeated. If you are not being treated at National Cancer Institute designated comprehensive cancer center, please consider traveling to such a center. If not for treatment, then at least for a second opinion on treatment, as your case is unique. Find the nearest center here: https://www.cancer.gov/research/nci-role/cancer-centers/find

Traveling to such a center saved my life - three times now.

Evarista
Posts: 253
Joined: May 2017

Sounds like "agressive" and also a "double expressor"? I would want to know more about the marker expression.  Specifically: CD19 and CD22.  Also molecular results relating to the BCL-2 & BCL-6:  you need that to distinguish between double expressor vs. double hit. Since you grouped that with other cell surface markers, I am assuming that's what you (they) mean.

Don't know anything about your radiation question, sorry.  Glad to hear that you have a Hem-Onc doctor, though. Good luck with it all.

dtat67's picture
dtat67
Posts: 16
Joined: Oct 2018

On page two it says, "Findings demonstrate a diffuse large B-cell lymphoma, non-germinal typer type (CD10-/BLC6+MUM1+), with dual BCL2/MYC protein expression"  

So does that mean something of significance? Is this something that I should discuss with my Hem-Onc doctor? As I said I have just finished 6 R-CHOP 21 treatments.

Evarista
Posts: 253
Joined: May 2017

That report tells you that you are a double-expressor (BCL2/MYC).  But it does not address the issue of "double-hit" because there is no molecular reporting evident in this part of the report.  While you might assume that it was done and was negative, I would ask this specific question to clarify your status.  The result may be buried somewhere in your report, but if you cannot find it or do not understand it, ask!  And either way, remember that these are statistics, relative risks, etc.  Your situation is specific to you.

dtat67's picture
dtat67
Posts: 16
Joined: Oct 2018

Thank You. After looking at my Path, I'm not sure I was correct. It contains a blank before the statement  - like a standard format type of printout? What do you think?

Clip-from-Path.jpg

Evarista
Posts: 253
Joined: May 2017

I think your understanding of the BCL2/BCL6/MYC expression is correct.  But the molecular (FISHFluorescent In Situ Hybridization) result is not there.  Either it was not available at the time of the report or that testing was not done (seems unlikely as there is a space for it).  I went back through my results (I am a double-expressor but not double-hit) on our patient portal and I cannot see my molecular results either. So, if you want to know, you'll need to follow up with your doctor. 

Just as an aside (and this is not a bad thing):  the word "Fluorescent" is mispelled in the report. This suggests that perhaps the testing was sent out to a speciality lab, which could delay results. 

As a double-expressor, I worried a lot early on.  As I have moved forward, I've decided to let the positive indicators be paramount. Good luck.

po18guy
Posts: 989
Joined: Nov 2011

Here is an article that is reasonably understandable and which defines the difference between "double expressor" and "double hit" Diffuyse Large B Cell Lymphoma. While neither category is good, double expressor has less risk than does  double hit - which is not only a challenge in primary treatment, but especially so if it relapses.

http://www.bloodjournal.org/content/128/22/5396

po18guy
Posts: 989
Joined: Nov 2011

The point is to have a razor-sharp hematologist, treat it as aggressively as practical and just have the will to survive.

dtat67's picture
dtat67
Posts: 16
Joined: Oct 2018

Scheduled for PET scan. If it shows all clear (which he expects) then I will need to have  17cycles IMRT at 30gy - it should not affect my eye except might speed up my need for cataract lens replacement. My opthmologist says I already have a sight cataract. It shouldn't  otherwise affect my vision. 

Any comments?

po18guy
Posts: 989
Joined: Nov 2011

Go for a second if you can, but that sounds reasonable.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

Dave,

While the weight gain you described is not your most worrisome issue at the moment, I will note that it is likely from the Prednisone you received -- a component of CHOP.   Weight gain is faily common among CHOP patients.  Also, cataracts are strongly linked to Prednisone, so it may cause some worsening of yours, another thing to follow.

I am somewhat familiar with IMRT (Image-Modulated Radiation Therapy) from prostate cancer discussions. It is highly precise in aim and ordinarily does not hit healthy adjacent tissues.  Skin reddening is the most common side-effect, when it occures.  Once you are set up for treatment by the radiation oncologists, treatment sessions only last an hour or less.  IGRT is a slightly more advanced technology, if it is suited for your treatment; only the doctor can determine this.  Many radiation devices are capable of both IMRT and IGRT. Also, often R.O.s fairly routinely refer to IGRT as IMRT anyway.  

Usually, RT is WAAAYY easier to undergo than almost any form of chemo.  But it is disappointing to need it, no doubt.

max

dtat67's picture
dtat67
Posts: 16
Joined: Oct 2018

I appreciate your knowledge and it makes me a lot less apprenhensive. My thoughts have been all over the board in the last 5 months. Now that I have finished my Chemo my mental attitude is much improved. If my PET comes back clear (which I think it will) then that will really be a relief. I worry about the RT affecting my vision more than anything. I'm feeling better everyday and I actually think I'll be back to my old self soon. I'll really be glad when my hair comes back - I don't like it and although I think I'll keep my hair short since it has been so easy, it makes me feel kind of like a space alien. I haven't missed shaving as often at all. As far as the weight...it came on extremely quickly....I hope to get it off as fast. 

Dave

po18guy
Posts: 989
Joined: Nov 2011

We are all worriers to some extent. But, try not to worry about the "risks" "possibilities" "potential" or "could bes" that over-cautious medical professionals express to nervous cancer patiets. Whatever happens (think of your loved ones here) life is worth fighting for.

If you have grandkids, take their picture and contemplate it. That alone should give you the fortitude, the desire, the will to carry the fight on.

Risks and all.  

dtat67's picture
dtat67
Posts: 16
Joined: Oct 2018

Thanks Man for the good advice. I admit I am having a hard time being sick - just hoping things can return to normal soon. 

I'm on my way back!!!

Dave

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

Dave,

If Mick Jagger can rock huge arenas till he's 85, we can all beat lymphoma for a few decades !

max

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

The comment about the eye hit home for me. I have some vision in my left eye, result of lazy eye condition. Last year I had surgery for basal cell on the right side of my nose. It had spread down my cheek some and up to the corner of my right eye. I was so nervous about it affecting my sight I wanted to cancel the sugery but I knew that was not really an option. I hope all goes well with your treatments and your eye is not affected.

dtat67's picture
dtat67
Posts: 16
Joined: Oct 2018

Thanks for your support. I went for a PET scan yesterday and was scheduled to meet my radiation oncologist Fri. (tomorrow) to discuss the results and get my "planning and simulation". However I went to discuss with my opthalmologist before going home. I have used this eye doctor for over 30 years and trust her. She sent me an email at 1:30AM (now that is a GOOD doctor) last night advising me to go to MD Anderson in Houston and investigate Intensity-modulated proton therapy (IMPT) versus Intensity-modulated radiation therapy (IMRT) which I would be getting in Austin. She said that although I might have any toxicity immedately after the treatment 2-3 years down the road I could develop retinopathy and then nothing could be done for my vision. I'm not sure how things will go but I am going to a second opinion. So I will go to discuss my PET results and put the simulation on HOLD. It's not that I don't trust my Rad/Onc but I simply do not want to lose my vision. I'm just hoping that my insurance will cover it. I have an Advantage plan through my former employer and although I can go to any Doc/Facility that accepts Medicare that doesn't mean they will pay for all procedures. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

Dave,

Like IMRT, proton therapy is sometimes used against prostate cancer.  Proton is not routine, but guys report choosing it periodically.  The issues they share are usually (1) most cancer centers do not offer it, and (2) many insurance plans will not pay for it.  Other than these factors, they seem like a mostly pleased group.

I am not well-read regarding it, but I believe that it is mostly effective when used.  

max

illead's picture
illead
Posts: 834
Joined: Aug 2012

We have been to MDA many times and cannot say enough about it and the lymphoma dept is awesome.  Medicare pays for everything so no problems there  You will be in good hands.

Becky

Scubamom for two's picture
Scubamom for two
Posts: 16
Joined: Apr 2018

I too, have been to MDA many times and the Lymphoma team is amazing there!  They saved my life!  I chose to receive all my treatements from them at their main facility in Houston even though I live in far Northern California!  I went through 6-rounds of in-patient DA-R-EPOCH, 11 IT chemo treatments, and two consolidation rounds of High Dose Methotrexate over 5-1/2 months.  I have now been declared officially in Remission for one yr-all thanks to their state of the art, aggressive, and comprehensive approach to treating the DLBCL that was ravaging my bones and bone-marrow when I arrived there.  Anyway, best of luck to you dtat67 on your journey to better health!

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