Hi all, I guess like the title says I am new to this forum and stem cells but certainly not new to cancer, maybe new to blood cancer, I've had a previous bout with testicular cancer so that was pretty nutty pardon the awful pun. I had metastatic testicular cancer and had the run of the mill surgery, chemo and then even more advanced surgery to then go on pretty okay-ish for 3 years and then bam like a truck lymphoma hit me. Well it was morel like a thief in the night, I honestly thought I was having some pretty bad heartburn and my eyesight was wonky so obviously I lugged myself to A&E which is well known for timely responses, many hours later I was told we're gonna fix you up(they were very sweet though), after a bit of fixing(an entire month of trying treatment after treatment-antibiotics maybe about 40 shots of neupogen just to raise by bloods- I was pancytopenic) they couldn't find what was wrong with me but I was kinda good enough to go home(bloods raised to somewhat okayish levels at this point) and I was shipped back home with a maybe its aplastic anaemia but we don't really know even though I felt awful. I mean I can't blame them, the bone marrow biopsy seemed normal and I did present as COVID positive initially so I was a weird case. Fast forward to being home, my one remaining testicle became the size of an egg, honestly looked like one too, at times when I was sick I pondered on if it was hit hard yok may come out, not very appetising or pleasant imagery though but I digress- my lymph nodes became swollen, my face looked like I had been beaten up by Mike Tyson, eyesight kept on deteriorating, couldn't walk very far(Felt like I was climbing everest not that I have ever done such a thing-I mean there's a pile of dead bodies there, kudos to those brave enough to go). I also had pain in my nerves and couldn't sign a signature nor could I even walk, well I couldn't walk very far without being exhausted but hey this was now like a sharp pain, I kind of stopped going to public hospital and sought out a private doctor who did biospy me and gave me tablets to swallow which I very well couldn't which landed me in A&E again and this time the doctors were awful and I forgot to mention I had night sweats and constant fever the month I was home. The doctor in A&E looked at me with fever, swallowing issues, swollen face, couldn't walk and asked me why I was here and I told him I felt like I choked on a tablet and he told the staff I should be sent out of his A&E, very lovely man and a stellar human being, did I mention they knew I had a fever and I wasn't even offered a Panadol, lovely folks, but hey this is healthcare. Well turns out I had appendicitis and not any normal appendicitic-it turns out cancer had spread to the appendix so fun.
A surgery here and there, some sepsis and almost dying and waiting on the results of the biopsy which I swear took an entire month, did I mention they put me in isolation and the coldest room in the hospital, it was like they were trying to cryopreserve my one remaining testicle, good times. On a good note besides that bad experience with the A&E doctor they really tried their best for me. I was diagnosed with Acute B-Cell Lym,phoblastic Lymphoma. I have since undergone 5 cycles of Hyper-CVAD chemotherapy and I am supposed to be on my 6th right now but there are other patients and they take priority so I am home at the moment waiting for a hospital bed. Addtionally I am supposed to have a stem cell transpant, my doctor has advised autologous, I have read that autologous comes with its own risks but so far I guess because my FISH panel and Karytyping is good I am a candidate for autologous, from what I have read allogeneic would be better but I am not the expert and I am not sure. I don't have the money nor do I have insurance to cover the cost of stem cell, so I am still taking chemo while I do a gofundme which is coming along, I am about 20% of the final amount for the procedure at the moment which is good. But I have to keep on taking chemo until I have the money but I am not getting chemo at the moment which is bad. I am not sure what to make of all of this but I have been told I need a stem cell because its my second malignancy, I am hoping for the best and just wanted to share a bit of my story to others here. I guess I am hoping to update in the event I do raise the money. I've kinda lived in hospital for the past year so I've eaten through my savings just doing medical testing, its kind of like every time I save I get sick, its been interesting but I am not one to lose hope and hope to keep on fighting. This is a bit of my story and will update as things progress.
Hi jamess2204 and welcome across to this corner of the Community.
I am Mike and I help out around our various Lymphoma groups as well as this group.
For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (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.......especially as I have had 2 Allograft Stem Transplants........ My 25 years story is rather complicated but you can See my story using this link.
You have had a double whammy having been fighting your Testicular Cancer..... and now this.
Does THIS LINK represent to type of Lymphoma you have?
I take it from your text above that you may not be in the UK....... in that you have no Insurance and are looking at funding for an Autologous SCT.
As you have been posting on the Community in our Testicular Cancer Group you will see that the founding for medical care in the UK is rather different.
Stem Cell Transplant is a demanding process but a Self (autologous) stem cell transplant has less post SCT lasting effects compared to having a Donor (allogeneic) stem cell transplant
This link will give you a general overview of Having a stem cell transplant.
We do have a few members from around the world with a few in the USA so lets see if they are still looking in
Always around to chat and help out as best as I can
