Public health care in Costa Rica for DLBCL; What am I missing?

Jim M

Hello everyone,

I am being treated for DLBCL at a public hospital in Costa Rica. It is far different than my past experience at Moffitt Cancer Center in Tampa.

I am getting R-chop with IT methotrexate. Instead of doxorubicin I get epirubicin. How it works here is I get a consultation with the hematologist(lab work first and he reviews it with me). He prescribes prednisone which I get b/4 chemo. He schedules the chemo. The day of chemo. I do labs first. They don't tell me the results. Just give me the chemo. Then I'm sent home which is about 3.5 hours from the hospital. I have his number but he discourages calls unless I have a quick question or major issue. If I would have an emergency, there is a hospital close to where I live but they have no oncology or hematology services. The only other way I can get more questions answered is through a paid consultation with the chief hematologist of the public hospital. I do have her email, written her and we've spoken over the phone. It is not the same individualized attention but I will say the staff are efficient and caring but not used to taking alot of time with patients.

All that being said what can I do to maximize my treatment? What am I missing? I will ask for/take pictures of all my results, my medical file. Thank you for reading this long post and for your input. Blessings and success to all.

catwink22

2nd opinions?

Hi Jim,

I was supposed to have R-Chop but they changed my regime at the last minute so I don't know if you're missing anything? I drink LOTS of water during my treatments. 

Is there any way to get a professional 2nd opinion?  I know Dana Farber in Boston will review your files for a fee.

Best of luhck to you!

Cat

po18guy

Do they suspect Central Nervous System involvement?

R-CHOP is the gold standard for many B-Cell Lymphomas. The Methotrexate is a puzzler, unless they found lymphoma cells in your spinal fluid, or the tumors are close to the dura and it is administered as a prophyaxis. As to doctors, in Central America, they are old school as far as the attitudes go. They have the degree and your job is to listen to them and follow their instructions - quite different from the US of A. This is a litle didfficult to get used to, and my wife has irritated a doctor or two down there by asking questions - and she is from Latin America! 

What you might do is contact Moffitt and ask how your file could be reviewed there.

PBL

Primary Testicular Lymphoma

Po18guy,

I remember reading that methotrexate is part of the standard treatment in Primary Testicular Lymphoma (if I've read Jim correctly, that is his case), due to frequent CNS involvement in this atypical presentation. Found the notion puzzling too, but there it is!

PBL

Sandy Ray

IT methotrexate

Just my experience but I had 6 rounds of RCHOP and 4 IT methotrexate. There was no CNS involvement but the Dr at MD Anderson felt the aggressive tumor growth in the chest region caused him to feel it would be good preventative treatment. My local Oncologist did not really think it was necessary but said he felt ok following the MD Anderson Oncologist recommendation. So that is what we did. I did read where there were some studies done in Japan. In some cases where there was a high instance of certain types of Lymphoma which relapsed in the CNS those who had preventative IT methotrexate they had significantly less chance of CNS involvement relapse.

I did a lot of research on it and it is definitely not the standard course of treatment unless there is already some type of CNS involvement. However, after all my research I went forward. The procedure itself brings a little anxiety at least it did for me. Local anesthetic (lidocaine) and then lumbar puncture with spinal fluid drawn off and then the chemo injection. Always a little anxious when the needle went in and there was still some discomfort. No other side effects for me. However, there is always a chance with lumbar puncture of the puncture not sealing and requiring a blood patch. I had no issue with my 4 which again was another source of anxiety. Lots of things I worrry about that never happen.  All in all the RCHOP was much tougher than the IT but as of yesterday I finished both. Now working on getting through the side effects of RCHOP and hopefully back to life.

Sandy Ray

Evarista

Epirubicin & the Mtx questions

Hi Jim.  Been doing a little reading on your questions.  Caveat: I am not a doctor!  But I do have a biotech background & familiarity with "reading the literature". So, and this is just my take on what I've read, not intended to substitute for the advice of your doctor:  Epirubicin seems a not uncommon alternative to doxo in many places.  It seems to be used more commonly outside the U.S., so I am not surprised that that is what you are getting. If you want to read more about it, try googling R-CEOP and R-miniCHOP instead of R-CHOP.  Interestingly, clinical trials suggest that it has lower cardiac toxicity than doxo and therefore may be preferable in older patients, especially those over 80.

On the Mtx IV vs. IT question: it doesn't look to me as though the jury is "in" yet on the comparable efficacy of IV treatment.  Investigation seems to be ongoing, but I'm thinking that Sal (?) has it right in your other post:  IT for prevention and with particular categories of lymphoma.

Hopefully, you have confidence in your medical team. I do hope so.  Those labs beforehand are most likely checking your blood counts (WBC, platelets, absolute neutrophil count, etc.) to be sure that it is safe to administer the chemo.  Good luck with it.