Hodgkin Lymphoma was stable, now new activity

@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

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!!!!

@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.

@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.

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.

@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?