Hodgkin Lymphoma was stable, now new activity

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!

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!

@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?

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!!!!

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!

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).

Hi Becky, have you heard from your oncologist in the meantime? Are you a patient at Mayo Clinic?

My oncologist/hematologist actually suggested in bringing in another doctor but I assured her I trusted her judgment. Now I’m wondering if I did the right thing because the latest symptoms hadn’t appeared yet.

I have to many doctors fighting over the same bone, ME!!! I have so many rare things wrong with me, they’re lined up to see who gets the chance to examine me. Problem is, they’ve never had a freak of nature to prob into. I’m so rare, get this, I was at my dentist many years ago to have a tooth yanked. After pulling it he cried out OMG and explains to me how rare the tooth was that he pulled out. Its so rare he says, he was sending it to a museum in Philadelphia and there it sat on display, hummm, a freak of nature, not me!!! I get rare eye diseases that can blind me if I don’t rush to the hospital to get it treated. A lot of doctors hurt me because they think I’m normal. Fourteen that 14 doctors from 4 different departments couldn’t figure out what was wrong with me till it almost killed me and they had to rush me into the operating room for surgery. Four hours after my operation, I had my first heart attack in the cardiology recovery area. And you wonder why I have trouble with doctors diagnosing me correctly.

Yeah, I know about the lymph nodes. I just had to get a new PCP, my old one got a promotion and left after we solved the mystery of my blood and heart. MGUS & WPW, neither would have been discovered had I not did all the research, while my doctors fluffed off the symptoms I saw that they didn’t. I’m keeping a close eye on my nodes, especially the left one under the jaw, the right armpit and the right groin. My new pcp is very excited to have me as a patient, I wonder why. As he was leaving the room after the exam, he turned and says, “You sure are complicated Becky!” I said “Yeah, tell me something I don’t know!”

@becky1024 If I were in your shoes, I would also be concerned about your lymphadenopathy. As you may know, there can be other causes for this, not just malignancy. Infection is one major cause, for example. If, as you say, your physician has not rendered guidance, can you consult another hematologist/oncologist for a second opinion? This would be my choice, as you can see from my post above. My oncologist welcomed - in fact suggested - an outside consult for my new active node. Good luck in running this to ground. A last question: have you had any of the nodes biopsied?
Sincere good wishes. hnipper

@colleenyoung sorry for misspelling you name on hnipper’s post, please read my post, it’s very important to me. Sincerely, @becky1024