Hodgkin Lymphoma was stable, now new activity

Posted by hnipper1 @hnipper1, Jul 23 7:35am

My Hodgkin Lymphoma, Stage II, above the diaphragm, with no mets, was diagnosed in January 2020. It has been treated with AVD, Brentuximab-vidotin, and now Nivolumab for 18 months. A PET scan on June 3 showed new activity in a subcarinal lymph node near the esophagus. This is the first sign of spread to a new node. Has anyone else had experience with this type of spread? Until now, the tumor has been 'stable'.

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@hnipper1, I was reviewing your posts in the Nodular sclerosing Hodgkin lymphoma (NSHL) discussion here: https://connect.mayoclinic.org/comment/675226/

I'm tagging some of the members you've connected with in the past, namely @fishingfever @jenniferswayze76 @niki101 @melbishop @mepowers @grandpabob, who may be able to share about their experiences with spread to the lymph nodes.

Hnipper, it must be a blow to hear that the cancer is on the move after being stable for an extended period. What treatment has your team suggested? How are doing?

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Colleen,
Timing on this email couldn’t have been better. I was diagnosed with Hodgkin’s in 2010 and went through chemotherapy and radiation. I was declared cancer free end of 2010. Since then I went through prostate cancer and bladder cancer. About 3 years ago I had CT scan for a non cancer related problem. It showed some swollen lymph nodes and I went through needle biopsies with negative results. I had another CT this last January and they commented on my swollen lymph nodes again. Needle biopsy results were negative but my doctor decided to go a step further and have a lymph node removed. I received a call from the surgeon last week and he said the lab results are showing Hodgkin’s. I have not heard from my oncologist yet so not sure what treatment they are doing. In 2010 the lymph node was located in my neck and I could feel it. This time according to the CT they are in my groin and armpits. I do not feel them or any discomfort. Let me know what I can do to help you.

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@fishingfever

Colleen,
Timing on this email couldn’t have been better. I was diagnosed with Hodgkin’s in 2010 and went through chemotherapy and radiation. I was declared cancer free end of 2010. Since then I went through prostate cancer and bladder cancer. About 3 years ago I had CT scan for a non cancer related problem. It showed some swollen lymph nodes and I went through needle biopsies with negative results. I had another CT this last January and they commented on my swollen lymph nodes again. Needle biopsy results were negative but my doctor decided to go a step further and have a lymph node removed. I received a call from the surgeon last week and he said the lab results are showing Hodgkin’s. I have not heard from my oncologist yet so not sure what treatment they are doing. In 2010 the lymph node was located in my neck and I could feel it. This time according to the CT they are in my groin and armpits. I do not feel them or any discomfort. Let me know what I can do to help you.

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@fishingfever, wow, you’ve been through a lot with 3 different cancers and now Hodgkin’s recurrence. I’m sure @hnipper1 will appreciate connecting with you as they have a similar experience happening right now too. Please post when you learn more about treatment next steps.

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@colleenyoung

@hnipper1, I was reviewing your posts in the Nodular sclerosing Hodgkin lymphoma (NSHL) discussion here: https://connect.mayoclinic.org/comment/675226/

I'm tagging some of the members you've connected with in the past, namely @fishingfever @jenniferswayze76 @niki101 @melbishop @mepowers @grandpabob, who may be able to share about their experiences with spread to the lymph nodes.

Hnipper, it must be a blow to hear that the cancer is on the move after being stable for an extended period. What treatment has your team suggested? How are doing?

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@solleenyoung I am doing well for an 82 year old, and feel no different than I did a year ago, but my team here in Omaha has suggested having another set of eyes on the PET scans. My Zoom with the second heme-onc physician is 8/3. First look is that the newly active node is hard to get to. Don't know what the options are, but will learn over the next few weeks. I am remaining calm but obviously concerned.

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@hnipper1

@solleenyoung I am doing well for an 82 year old, and feel no different than I did a year ago, but my team here in Omaha has suggested having another set of eyes on the PET scans. My Zoom with the second heme-onc physician is 8/3. First look is that the newly active node is hard to get to. Don't know what the options are, but will learn over the next few weeks. I am remaining calm but obviously concerned.

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As I wrote in another thread, we are adding bendamustine to my nivolumab regimen. Both oncologists did not think another biopsy was needed, and seem sure that the new node is Hodgkin Lymphoma, Here we go!!!!

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@Colleneyoung and hnipper, your posts have been informative and helpful. Collene, as you know from my prior posts, my MGUS is progressing towards Non Hodgkin’s Lymphoma or Waldenstrom Macroglobulemia. After reading these posts today, my prognosis seems worse than I expected. Since my NHL is still progressing, new symptoms are happening that now worry me. One complication is my lymph nodes have swollen. At first the nodes were above midline, both under the jaw, both at the bottom of the neck and in both armpits. They were all firm but not really sore. Then within a week, the right crotch one began to act up. Because it’s below midline, which seems to be a bad indication of progressing, should I be concerned?

I reported it to my Oncologist/Hematologist but never received any guidance from her. To complicate matters, my Lymphatic system below my knees has been blocking up. It gets so pronounced, you can even see each blocked juncture. Then my lower legs swell up, especially the left one. My B cells are way down, my lymphocytes are below normal, my neutrophils are above normal, the T cells seem normal but my white cells are up but my platelets are close to bottoming out, plus I’m anemic. Am I in trouble, since my doctor seems unconcerned with the numbers. What should I look for, symptom wise, to determine if my NHL is progressing? Any advice from either of you would be much appreciated. @becky1024

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

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@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

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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!”

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@becky1024

@Colleneyoung and hnipper, your posts have been informative and helpful. Collene, as you know from my prior posts, my MGUS is progressing towards Non Hodgkin’s Lymphoma or Waldenstrom Macroglobulemia. After reading these posts today, my prognosis seems worse than I expected. Since my NHL is still progressing, new symptoms are happening that now worry me. One complication is my lymph nodes have swollen. At first the nodes were above midline, both under the jaw, both at the bottom of the neck and in both armpits. They were all firm but not really sore. Then within a week, the right crotch one began to act up. Because it’s below midline, which seems to be a bad indication of progressing, should I be concerned?

I reported it to my Oncologist/Hematologist but never received any guidance from her. To complicate matters, my Lymphatic system below my knees has been blocking up. It gets so pronounced, you can even see each blocked juncture. Then my lower legs swell up, especially the left one. My B cells are way down, my lymphocytes are below normal, my neutrophils are above normal, the T cells seem normal but my white cells are up but my platelets are close to bottoming out, plus I’m anemic. Am I in trouble, since my doctor seems unconcerned with the numbers. What should I look for, symptom wise, to determine if my NHL is progressing? Any advice from either of you would be much appreciated. @becky1024

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

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@colleenyoung

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

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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).

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@hnipper1

As I wrote in another thread, we are adding bendamustine to my nivolumab regimen. Both oncologists did not think another biopsy was needed, and seem sure that the new node is Hodgkin Lymphoma, Here we go!!!!

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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!

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