Hi everyone.
I've just joined and wanted to introduce myself, I'm Paul, I've been battling free light chain myeloma for a couple years now, after being diagnosed shortly before my 30th birthday. So far I've coped fairly well with treatment, which thus far has consisted of lots of dexamethasone, VAD, auto SCT, thalidomide (sadly completely ineffective) and Velcade (which has worked awesome so far).
Access to treatment is a little difficult here, but I'm getting by. At the moment I'm working on qualifying to be part of a trial for panobinostat, which should keep me covered for a while with a little luck.
I'm looking forward to being part of the forums and my best wishes to you all.
Forums
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PaulG - Name: Paul
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 29
Re: A brief hello from Australia
Welcome, Paul! I'm glad to hear Velcade is working well for you and I hope you're able to get into the panobinostat trial if that's a better option. With you're young age, you'll surely do well in the fight against myeloma. Keep us updated. All the best,
sally
sally
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sally moyer
Re: A brief hello from Australia
Thanks Sally,
Qualified yesterday and started today, got my Velcade and panobinostat / placebo, so my access to Velcade is a lot more secure than it is through the government's scheme.
Qualified yesterday and started today, got my Velcade and panobinostat / placebo, so my access to Velcade is a lot more secure than it is through the government's scheme.
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PaulG - Name: Paul
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 29
Re: A brief hello from Australia
Paul, that's great news! I hope you have great results on the trial regimen. Keep us updated. All the best,
sally
sally
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sally moyer
Re: A brief hello from Australia
Here's a long overdue update, someone messaged asking how I was going, so I figured I'd post the details here.
The trial was a bit of a bomb, but it somewhat kept things controlled for a few months. Eventually in December the treatment became completely ineffective and my lambda free light chains rocketed off to levels I hadn't seen since diagnosis.
Out of the treatment options I was given following leaving the trial, I decided to go the allogenic transplant route (unrelated donor), so from January through to April I did D-PACE in prep, which worked well, getting me pretty close to a complete response, but not quite, and I had the transplant in May.
Dealing with lots of drugs at the moment and always seem to have graft vs host disease of something at any given time. It's all a balancing act between immune suppressants, steroids, GVHD and side effects currently.
The myeloma seems to have taken a good hit, with my free light chains being normal and no abnormal cells showing up so far on bone marrow aspirates, the last being about a month ago.
I'm pretty weak at the moment, but at least I'm not on chemo, don't have any lines hanging out of me, don't have any myeloma related bone pain, and have hair to insulate my head.
The trial was a bit of a bomb, but it somewhat kept things controlled for a few months. Eventually in December the treatment became completely ineffective and my lambda free light chains rocketed off to levels I hadn't seen since diagnosis.
Out of the treatment options I was given following leaving the trial, I decided to go the allogenic transplant route (unrelated donor), so from January through to April I did D-PACE in prep, which worked well, getting me pretty close to a complete response, but not quite, and I had the transplant in May.
Dealing with lots of drugs at the moment and always seem to have graft vs host disease of something at any given time. It's all a balancing act between immune suppressants, steroids, GVHD and side effects currently.
The myeloma seems to have taken a good hit, with my free light chains being normal and no abnormal cells showing up so far on bone marrow aspirates, the last being about a month ago.
I'm pretty weak at the moment, but at least I'm not on chemo, don't have any lines hanging out of me, don't have any myeloma related bone pain, and have hair to insulate my head.
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PaulG - Name: Paul
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 29
Re: A brief hello from Australia
Hi. I think I have been following your story elsewhere and I had been wondering how you are getting on. I'm really glad to hear that the current treatment is looking hopeful. Getting multiple myeloma at your age is really tough. Cheers from a fellow Australian.
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Owl - Name: Sylvia
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2010
- Age at diagnosis: 57
Re: A brief hello from Australia
Yup, that's probably me. Don't post a lot as the disease is more something I prefer to only acknowledge when I have to deal with it. Treatment, clinic appointments etc suck up enough of my time as is, so I like to avoid giving away any more time than I have to. It's my little F you to the cancer -- I hit it hard as I can with treatment but I wont let it own me.
Kind of a bit hard at the moment, side effects from the allo transplant are pretty intense, but I'm stubborn and soldier on as best I can. Cancer is tough at any age, and while I may be young for myeloma, there's plenty of other things that could've taken me out before this, so I just gotta deal with it.
Obviously the big worry is how it affects my wife and family, and I'm trying not to feel guilty for being high maintenance as I'm by nature very independent. That, and the doc wont let me play with all the good power tools at the moment, lol.
Kind of a bit hard at the moment, side effects from the allo transplant are pretty intense, but I'm stubborn and soldier on as best I can. Cancer is tough at any age, and while I may be young for myeloma, there's plenty of other things that could've taken me out before this, so I just gotta deal with it.
Obviously the big worry is how it affects my wife and family, and I'm trying not to feel guilty for being high maintenance as I'm by nature very independent. That, and the doc wont let me play with all the good power tools at the moment, lol.
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PaulG - Name: Paul
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 29
Re: A brief hello from Australia
Love your attitude! You rock!
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: A brief hello from Australia
Thank you I do my best.
I do my best.-
PaulG - Name: Paul
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 29
Re: A brief hello from Australia
Cool update ... Was suffering from microangiopathic hemolytic anemia (MAHA) which was suspected to be caused by cyclosporin (immune suppressantt) toxcicity. In turn, this was causing me to need platelet transfusions frequently.
Well, I went down to the hospital yesterday, platelets were holding at a reasonable level, so I started to get excited. When I got to see my doc, further tests had come back from the lab and it turns out I'd titrated the cyclosporin dose down so far that it was no longer showing up on the test. I have no problematic GVHD issues at the moment, so my specialist said I may as well stop taking it.
Sweet! One less drug to remember and it seems the MAHA has gone. Here's hoping the GVHD behaves itself.
Well, I went down to the hospital yesterday, platelets were holding at a reasonable level, so I started to get excited. When I got to see my doc, further tests had come back from the lab and it turns out I'd titrated the cyclosporin dose down so far that it was no longer showing up on the test. I have no problematic GVHD issues at the moment, so my specialist said I may as well stop taking it.
Sweet! One less drug to remember and it seems the MAHA has gone. Here's hoping the GVHD behaves itself.
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PaulG - Name: Paul
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2008
- Age at diagnosis: 29
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