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Finished my R-CHOP 21, now what?

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dtat67
Posts: 8
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: 922
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: 8
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: 922
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: 232
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: 8
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: 232
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.

po18guy
Posts: 922
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

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