September 2023
1 Kudo
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.
... View more
August 2023
3 Kudos
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.
... View more
June 2013
I am 30 years old, German and here on a long stay working visa. I have recently been diagnosed with nodular lymphocyte predominant Hodgkin's lymphoma (a very rare form of Hodgkin's lymphoma) and am probably in stage III (the staging is not completed yet). I have decided to stay in Australia for treatment although I know that it will be a tough time. I will probably start chemotherapy at the Kinghorn Cancer Centre very soon. I am still not sure whether I should choose the ABVD treatment or escalated BEACOPP. Does anyone have experience with one of these two treatments and can give me tips how to best organise my life around those regimens and what to expect from them?
It seems that studies (I'm a Scientist and have access to all relevant journals) are very inconclusive about the befenits of BEACOPP esc. over ABVD, particularly for my type of lymphoma.
... View more
June 2013
I am 30 years old, German and here on a long stay working visa. I have recently been diagnosed with nodular lymphocyte predominant Hodgkin's lymphoma (a very rare form of Hodgkin's lymphoma) and am probably in stage III (the staging is not completed yet). I have decided to stay in Australia for treatment although I know that it will be a tough time. I am trying to establish a support network through my friends, flatmates and my boss' family. I will probably start chemotherapy at the Kinghorn Cancer Centre very soon. I am still not sure whether I should choose the ABVD treatment or escalated BEACOPP. In general, I'd be happy to meet people (either online or maybe even in person) who are either survivors or are facing the same fears and situation as me. I try to think postitively and keep calm although I am also very scared because I do not know what to expect. Is there anyone in my age range?
... View more
June 2013
I am 30 years old, German and here on a long stay working visa. I have recently been diagnosed with nodular lymphocyte predominant Hodgkin's lymphoma (a very rare form of Hodgkin's lymphoma) and am probably in stage III (the staging is not completed yet). I have decided to stay in Australia for treatment although I know that it will be a tough time. I am trying to establish a support network through my friends, flatmates and my boss' family. I will probably start chemotherapy at the Kinghorn Cancer Centre very soon. I am still not sure whether I should choose the ABVD treatment or escalated BEACOPP. In general, I'd be happy to meet people (either online or maybe even in person) who are either survivors or are facing the same fears and situation as me. I try to think postitively and keep calm although I am also very scared because I do not know what to expect. Is there anyone in my age range?
... View more
