It's Back

A symptom or anything you said in retrospect that lit up on his radar ?

Did he recently read something or go to a course perhaps that changed his approach ?

It's a mute point.

I have follicular NHL as well.

Your post struck home.

I truly wish you the best and hope that you can push this diagnosis to the farthest corner of your brain

and enjoy your cruise.

Steve.

It's what we all dread in the back of our minds. I'm so sorry. I just put you back on my prayer list. Know that I will be praying for you daily. Have an awesome cruise!!!

Jeff 

As I understand your diagnosis, it was follicular transformed to DLBCL? If so, I think a clinical trial would be appropriate. If not, and it is still follicular, Bendamustine-Rituxan is the gold standard. From what I have seen online, if Rituxan fails, Bendamustine can be added and the two form a synergistic combination, each building on the other. But, first things first: Life is worth living, so enjoy that vacation! 

ROC,

With everyone else, I am terribly disappointed to hear your report. I do not think anyone expected this from your corner;  you had been getting good results, and did everything 'right' toward promoting your health.

It seemed to me the results are perhaps not very detailed yet: what strain is the possible recurrence, etc. As further clarity comes forth, I hope the prognosis is very good.  

I am at a loss, stunned.  I myself have been getting CTs for two years regarding a spot in the base of one lung. The doc has never thought it was malignant. I get the last protocol-required CT in July. I only relate this to explain that I can relate to these latter-day frights.

The fact that your oncologist did not order an immediate biopsy may be some small consolation, a cause to believe this will be easily beatable.

I've never been to the Bahamas as a civilian, but we surfaced many miles offshore from Nassau once and had a brief swim call. Stunningly beautiful, blue-green water. Enjoy !

max

So sorry to hear this. this was the first thing I saw after not checking in with everyone in months

XXXOOO

Carie

Hola Rocquie -

I had very advanced, aggressive Stage 4 DLBCL plus Stage 3 FNHL diagnosed in September of ’11.  Other than Neupogen pain, the regimen was not too difficult (in-patient for 6 days for 24/7 R-Epoch then home for 2 weeks.  Wash and repeat 5 more times).  One time during one of the stays and at a moment when my husband wasn’t around, my doc quietly agreed that I was doing great but that the FNHL would be paying me another visit down road.  I kept that lovely piece of news to myself, kind of ignored it and got back to my life.

Almost 4 years later (December 2015) I suspected something was up (fatigued, achy-ish and just generally off)…surenuf’ the FNHL was back.  With a vengeance.  Spleen, other organs and quite massive bone involvement. 

If your doctor has recommended watch and wait, it’s almost certainly because he’s comfortable with your FNHL’s INnactivity and that’s darn good news.  Even if it becomes active in 2 or 22 years, there are very effective state of the art treatments like stem cell transplants and a really really really good chance that a cure awaits us in the not-to-distant.

Me? – My recurrence can’t be a watch and wait…too advanced.  But, it is now almost mid-May 2016 and, after a super-easy 4 months of Bendamustine-Rituxan I’ll be having an autologous Stem Cell Transplant starting around the end of June.  That’s assuming all goes well, which I have no reason to doubt.  Hopefully that will give me many years of remission.  I guess you could call a Stem Cell Transplant sort of the n’est plus ultra” of “watching and waiting”?  Or does anyone out there in the medical community consider a stem cell transplant a cure?

Feel good, be ferocious and enjoy each day.

Paella

Hi Rocquie.  I am 2 years into my treatments now.  I am praying for you.  You reached out and gave me encouragement after a post when all of this was new to me.  I am reaching back to you. You are incredibly positive and strong.  Keep being a warrior.  

I was diagnosed with FL in 2010. Waited and worried for about 5 years . After many ER visits, and the inevitable end of my massive denial I returned to my oncologist who was PISSED off. She was angry that I had blown right past the option of rituxin and forced myself into RCHOP for what was believed to be transformed DBCL. Pathologist conformed and I had my BMB right there in her office Christmas eve 2015. Chemo started Dec, 26 2016. Somewhere towards the end of chemo I was sent to UCSF to discuss SCT because of my age and otherwise good health. Lymphoma specialist informed me that I had not transformed to DBCL but that my FL had moved up to grade three but that the RCHOP was still appropriate treatment. Finished chemo in April, had PET which showed a few spots with hypermetobolic activity. Wondered if this was FL or left over "DBCL" nobody could agree. Oncologist wants to radiate to be sure. overkill....maybe but wants to be safe. Radiologist agrees, lets radiate....BUT, lets get a second opinion . UCSF says no radiation, left over hot spots are a 3 SUV and not life threatening. WRONG!!!!!!! Last week I was hospitalized , septic, huge renal mass blocking my kidney from draining into my bladder. Back flow caused massive kidney infection leading to sepsis. Nephrostomy tube inserted in emergency surgery, ct guided needle biopsy confirmed relapse of lymphoma. Not sure what grade because the center is necrotic and was difficult to read . Doc says since it either returned so quickly, or wasn't cured to begin with that Im dealing with a monster and says salvage chemo and SCT are my last treatment options. Gives me 40% chance of survival. 

Can anyone advise? I have no clue what I am dealing with and googling this stuff is like asking the grim reaper for a light for your cigarette.