Uncommon immune system issues 10 years post chemo

[Lars1983]

Hi all,

this might be a long shot, but I thought it might not hurt to post this. First of all, I'm in excellent hands at RMH and Peter Mac in Melbourne with a wonderful specialist that has known me for 9.5 years and the wider team of specialists that he consults with to discuss my case on a regular basis. I'm not looking for any health advice but am just curious if anyone who has survived cancer and chemo has developed comparable, strange issues that are probably immune system related. If yes, please get in touch by private messenger or replying to this post, even if your cancer story is completely different to mine.

My history: I received chemo (six cycles escalated BEACOPP) for a rare type of Hodgkin's Lymphoma in 2013 and have been in complete remission since November of that year. My PET Scan around that time showed no activity and my lymphoma seemed to have responded completely to chemo.

Post chemo problems:  Since 2016 multiple PET Scans (the latest was done two weeks ago) show enlarged, active lymph nodes. I've had three biopsies since 2016 (the last one in Sept. 2022) and they showed no relapse but either a benign condition (in 2016) or simply a reactive lymph node (in 2021 and 2022).  In 2018, my platelet count started to fluctuate, but the pattern is very unusual according to my specialist. Since 2021, my neutrophil count has done the same. This present year is the first year where GCSF (filgrastim) injections do not lead to a longer-lasting improvement with the neutrophil count dropping again within a few days.  I had bone marrow biopsies in 2019, 2021, and 2023 incl. molecular and genetic studies, but MDS or any other malignancies were ruled out. In 2022, I was also tested for rare infections and autoimmune diseases, but nothing was found. I'm as fit as never before, very active, and have no symptoms that would indicate that anything was wrong with my blood-counts and lymph nodes.

The current hypothesis is that whatever is going on is not primarily a haematological problem but might have something to do with my immune system. I'm waiting for a referral to a specialist to investigate this hypothesis further.  It's my understanding that I'm a very unusual case, but I'm still curious to see if anyone else had comparable, weird problems.

Thanks for reading this.

[Gekko]

Hi there  i just saw your post and would like to share my weird things happening to me post chemo. Every few weeks i get severe shivers, feeling extremely cold and shaking uncontrollably. Temp rockets to 103. I go to bed and pile on the duvets and sleep. Next day i feel washed out but temp decreased and no shivers. The cancer specialist said i should get to hospital next time it happens, but i feel too ill to even pick up the phone. The last one wasn't as bad so i went to hospital but blood cultures ecg chest xray all normal. Gp did full blood count. Normal.  You mention nutrofils... i looked online and i wonder if it's something to do with that. The a and e consultant when i went to hospital said it might be bacteria getting into the blood through thinned digestve wall tracts. ( I had a whipple op for pancreatic cancer and chemo). I am not imagining it!  A mystery.  Had 5 episodes in august but not as bad as when it started 2 years ago, after i'd finished chemo. I was told it was ok to have covid jab whilst having chemo, but wonder if it was triggered by that. A mystery!

[Phil2023]

Ive had issues since going through treatment as well and it has affected my immune levels, 12 months ago I my immune system was so impacted I had 7 months off work. Doctors cant explain its but this time of the year with the pollen and change of weather impacts my immune system and place it under extreme stress. Its been difficult at times....but having dealt with bowel cancer and other issues 10 years ago, after multiple surgery's and chemo, my immune system hasnt been the same, but im still here fight fit the best I can and staying very positive . 

[Phil2023]

Hi mate, I've read your post and keen to get in crouch with others in a related situation. Happy to chain on here or send you a text or call, not sure how to send a private message, but happy to send you my number.  I'm not sure where you are based but Im in Melbourne. I'm currently working from home at the moment I've set up email notifications, but have only recently signed up to the online community so not sure how to send a private message on here, so I wont post my number until I can work out private messages. Thanks for taking the time to read my message, Regards Phil. 

[Gekko]

Hi there and I live in UK but i joined this vommunity as i cant find anything like it in uk. So i apologise that i am so far away and so could only communicate on this site sorry but thanks for letting me offload about my problem which has baffled everyone the medics

[Lars1983]

Hi,

Sorry to hear about your problems and that the doctors don't seem to find a reason. If your blood counts are OK, then I don't think it could be related to the neutrophils because it would have been flagged in the blood count analysis if they were low. 

Whatever it is, I hope the doctors will get it under control.

All the best.

[Gekko]

Thank you for your kind words and that has reassured me that can be ruled out.  I have suffered extreme stress since the end of chemo as the result of the actions of my two very wicked sisters - it is of epic proportions and would make a blockbuster movie (last thing one sister said to me was "I hope it's terminal").  People outside of the family know me to be a kind good person and suggest it stems from jealousy. There, i have turned this into a tome which I apologise for, sorry. 

I sincerely hope your path after cancer is uplifting and you are surrounded by good and supportive people.

Best wishes

Elizabeth

[rivage1287]

Hi there, I can genuinely relate to your journey, and I'm glad you have a dedicated medical team by your side. I've been down a similar path post-chemo, though our circumstances may vary. After my cancer treatment, I too encountered some puzzling health issues that left my medical team scratching their heads. The uncertainty can be quite trying, and I completely understand your curiosity about connecting with others who might have faced comparable challenges. Although my experiences aren't identical to yours, I found solace and insight by connecting with fellow post-chemo warriors. It's crucial to have faith in your specialists and keep exploring potential solutions as you're doing. On a personal note, I came across a fascinating article that delves into sea moss and its potential benefits for cancer patients. It might illuminate whether sea moss could suit your journey, particularly given your unique circumstances. I genuinely hope you discover the answers and support you're seeking in your path. Keep your resilience and positivity as strong as ever, and please don't hesitate to reach out if you'd like to delve deeper into our shared experiences.