Hodgkin Lymphoma was stable, now new activity

No to the Mayo question and no, not a peep! I wish I could be treated at the Mayo, a place that knows what they’re doing. Sadly, I’m poor and don’t even have a car anymore. I had to sell it to prepay for my cremation and burial. I’m on Medicare and my state’s run Medicaid, so I guess I’ll be dying just 500 feet from were I was yanked out of my mother because I was born at home.

I’m having trouble with new lymph nodes since Saturday. I’m exhausted from fighting my 5th battle with Covid since May & June 2020. I can tell something’s up with my body but what I don’t know. I wish I had a blood test to check, I’m getting the distinct feeling like my bad guys are on the move and multiplying. Do you know what a mouth Kancor sore is? They attack your own body as the enemy and start destroying it inside your mouth. I haven’t had one of them in 3 or 4 years, a bad omen to me that my precancerous cells have finally found a home inside me somewhere and finally progressed to cancer. Oh well Colleen, take Care, wherever she’s at!!! (Old joke, from an old broad).

Well the first installment of bendamustine (over two days) went well. So far, the only side effect has been mild fatigue on the days I received the infusions. Today - one day out - I seem to have more energy and alertness. Will have several more infusions of bendamustine over the next few months and then another PET scan to assess progress. Here's hoping!!!! What a ride this has been!

Well, the scond installment of bendmustine (over two days) was Wednesday and Thursday. They give me my regular dose of nivolumab followed by bendamustine on Day 1, and then on Day 2, just bendamustine. On the seond day, a couple of hours after I got home, i began to have shaking chills, so after not being able to contact my oncologist, went to the ER, where I was observed for several hours, and then discharged with no treatment. By then the shaking chills had subsided. After I got home, I ended up on the floor in our TV room, and the old cliche "Help, I've fallen and I can't get up!" came into play. I was so weak, that I couldn't get up - even with the assistance of my wife! I finally was able to rise from the floor and went to bed. Today, (Friday) there has been no recurrance of the shaking chills, and I seem to have regained my strength, although I do have some balance issues. Anyone else have similar experiences? Obviously I have to decide whether to take the third cycle of bendamustine that will come up in a month from now! It is very interesting that I did not have any side effects from the first cycle and none from the first dose day-before-yesterday, just the reaction on day two of cycle two!!!!

@hnipper1, for you next infusion, might you stay at the infusion center or close by for an extended period to see if you have this reaction again?

My next infusion will not include bendamustine but will include a visit with my oncologist about this problem. The next two infusions are the last two planned and then follows a PET scan to assess progress. Fingers crossed!

Update: As my spouse is also a Mayo patient, while in Rochester in late October, on the advice of my local oncologist, we contacted a Mayo physician, who in concert with my local oncologist, devised a strategy to minimize the reaction to bendamustine. Prior to that next dose, I underwent a PET scan to determine if, in fact, the bendamustine was working. Result was that there was significant progress on tumor sizes and SUV across my affected area! So I underwent another bendamustine infusion along with nivolumab and the revised strategy worked! My only side reactions to the bendmustine were relatively mild. Some digestive issues and dry mouth were noted, but managed. So we are on track for several more months of bendamustine! Thanks to Mayo for suggesting bendamustine and for helping manage side effects!

Great news, @hnipper1.

We are a year out from my last post, and the bendmustine has been slowly working to reduce the SUV and tumor size(s) with no spread and no new mets. This, until my last PET scan about two weeks ago when some activity was detected in my right lung. The activity was not specifically identified as a met, and I will get a CT scan with contrast next week to further characterize the finding. I have a productive cough that could be connected and my doctor thinks that pneumonia status post Covid-19 could be the culprit. More worrisome has been that my platelet count has dropped so low that yesterday's bendamustine was postponed until my platelets recover. I did receive my usual dose of nivolumab, however. I am also dealing with a low hemoglobin and HCT, as well as low RBC. Taking iron tablets has not raised the indices. Hoping that my situation improves so I can get back on treatments that were working! The plan is to consult Mayo heme-onc with the results of the CT scan and my other labs to see if we can discern a path forward. Overall I feel no different than last year when we added bendamustine. We had to work through the correct infusion rate of bendamustine and as well, the correct dose of steroids and fluids to avoid the side reaction of dizziness and danger of falls after the infusion! Updates as warranted.....

@hnipper1, did you have the CT scan yet this week or is that still ahead of you?

CT scan is tomorrow, Thursday, 11/9. Fingers crossed. Probably will see the interpretation by Monday.