Finished my R-CHOP 21, now what?

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

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.

dtat67 said:

Thank you so much, after reading your message

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.

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 said:

Not sure

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?

I think your understanding of the BCL2/BCL6/MYC expression is correct.  But the molecular (FISH; Fluorescent 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.

dtat67 said:

Had Consultation with Rad-Onc

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?

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 said:

Thanks for the insight

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

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 said:

Po18guy

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

Dave,

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

max