I was diagnosed with HIV in 2003, then in 2004 with NON-HODGKINS LYMPHOMA. During treatment for the cancer I at one stage was given VINCRISTINE.
My recollection may be wrong but having been given the Vincristine that same day or very soon after I experienced severe stomach pain after every meal.
This pain has been with me since then to the point that I have a very restricted diet. The episodes I suffer usually start a few hours after eating, with a small sharp pain above the belly button, gradually the pain increases to the point that it feels like a knife is being slowly pushed into me and then pulled out, eventually over several hours the pain has increased to the point it’s unbearable and I then feel the need to vomit, although this is difficult to do, so I just gag until eventually I vomit up an acidic bile (any food is surprisingly pretty intact) their is then relief from the stabbing pain until the whole process starts again. This is almost like clockwork lasting until the next morning. I can’t eat that next day but can drink. The following day I can manage food like toast etc.
Since moving to London having previously accepted that VINCRISTINE and perhaps the HIV medication (EFAVARINZ) were the cause, my HIV consultant, and two other specialists having come to this diagnosis. My current GP seems unable to accept this explanation and over the last several years I have been asked to have my gallbladder removed (to rule it out as a cause) which eventually after refusing (the GP had by then stopped pain medication) I did, this only made the symptoms worse. I was then again after being sent for various scans and scopes offered BOTOX to the sphincter inside my stomach. Again I was reluctant but eventually had the procedure done with DRAMATICALLY made the symptoms worse especially the length of recovery.
I am on here for the first time as yesterday I saw a specialist (in HIV and Cancer) and he has written to my GP (he didn’t say this to me at the consultation if anything the opposite) that the pain could have STILL BE BEING CAUSED by Vincristine was HIGHLY unlikely.
I just ike to know if anyone else has had experiences with this drug and these types of side effects especially LONG TERM… as it feels at the moment, that my belief that this is the cause (regardless of any ‘cure’) has been and is being nullified both by my GP and the health workers I have had dealings with these last few years. Thanks.
Hi StevieBf14fb3 and a warm welcome to this corner of the Community. I am Mike and I help out around our various Lymphoma groups.
For some context about me. I was officially diagnosed way back in 1999 at 44…… although I now realise I had most likely been living with with my rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma (a type of slow growing Low-grade non-Hodgkin lymphoma) …… for much longer.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Sorry to hear about your long term post treatment challenges…… unfortunately there can be post treatment left over problems……. some are hard to attribute directly to our treatments or could just be something else.
I had over 600hrs of Vincristine the O (Oncovin) in my 6 cycles of R-EPOCH back in late 2013 to late May 2014.
I had no real significant side effects during my treatment apart from severe Peripheral Neuropathy and Helicobacter Pylori resulting in the lining of my stomach being badly stripped….. the R-EPOCH was being used to open the door for me to go on and have 2 Allograft Stem Cell Transplants (SCT) along with bad total of 45 radiotherapy zaps…….
Some people can have the Vincristine reduced part way through treatment as this does help the Peripheral Neuropathy…… but as the aim of the treatment was to get me into SCT there was no way that any of the drugs could be reduced - I had to have the full force of the treatment.
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am now coming up to 10 years out from my last treatment, I turn 70 this year and I doing great.
You will see n my story I had significant challenges during my second SCT (Oct 2015)…… the main left over from my second SCT is a significant Hiatus Hernia…… it’s so big that it actually fully encloses around my stomach and pancreas gland but I am very thankful that I don’t have any real problems with it (yes some pains) and only need some Lansoprazole to control the lining of the stomach. If the HH becomes a problem then it will be a challenge what to do!!!!!!
I also developed A-Fib during my second SCT….. that eventually resulted in a heart attack in April 2022….. my Consultant Cardiologist recons that the Vincristine did the inital damage back in late 2013 to late May 2014…… but it took 8 years to kick off.
Happy to chat at any time.
