High there, I am a 43 year old Australian male and have been diagnosed in February of this year. I have multiple spinal and rib lesions and a wedge fracture of the T4 vertebra. I changed GPs after my previous one was ignoring my complaints of back pain, as he and other doctors had done for over two years. Amazing what an x-ray can tell you when you finally find a doctor who can be bothered ordering one.
Cannot fault my care and treatment since diagnosis. The medial staff at the local hospital and cancer centre have been fantastic.
I have had radiation and have just started my second round of chemo. I expect to complete four rounds of chemo before an autologous stem cell transplant scheduled for July or August of this year. I have been told that they are going for a "cure" and will likely give me a second transplant once I am over the first.
I have been off work since the spinal fracture and find, thanks to a lazy, possibly dishonest superannuation fund, that I spend more time worrying about family finances, in particular paying the mortgage and children's school fees, etc., than my treatment. Not good, but can't be helped as you need to live, sick or not.
Still coming to grips with the entire situation, the terminology, treatment plans, likely outcomes, etc. All very overwhelming at times, but slowly getting there.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Diagnosed February 2014
Hi Paul,
Also in Australia, live at Forrest Beach north of Townsville, and am being treated in Townsville through a private practice and also Townsville General for my auto transplant, which is scheduled for the end of this month.
I am 60 years old and was diagnosed last September. Had four cycles of VCD, a week off between cycles. Stem cells collected about three weeks ago, now ready to go for the transplant. Can't say I am looking forward to it because I feel so healthy at the moment. I know the transplant will knock me for a while, but looking forward to a good remission.
Interesting your doctors are using the word cure. It doesn't come up often with this disease. I am lucky to have been retired 4 years before diagnosis, so don't have any money or work issues .
Forums like the Beacon are great for increasing knowledge and hope for the future with this disease. I was not in a good place for quite a while, but the more I learnt about this disease, the better I became with it and the realisation that I hopefully will have a good many years left to live.
All the best with your treatment. I ended up with a bit of nerve damaged in one foot and a couple of blood clots from the chemo, but tolerated it well, with only the usual dexamethasone sleep issues.
Stay positive. It really does get better and we have a great health system here.
Also in Australia, live at Forrest Beach north of Townsville, and am being treated in Townsville through a private practice and also Townsville General for my auto transplant, which is scheduled for the end of this month.
I am 60 years old and was diagnosed last September. Had four cycles of VCD, a week off between cycles. Stem cells collected about three weeks ago, now ready to go for the transplant. Can't say I am looking forward to it because I feel so healthy at the moment. I know the transplant will knock me for a while, but looking forward to a good remission.
Interesting your doctors are using the word cure. It doesn't come up often with this disease. I am lucky to have been retired 4 years before diagnosis, so don't have any money or work issues .
Forums like the Beacon are great for increasing knowledge and hope for the future with this disease. I was not in a good place for quite a while, but the more I learnt about this disease, the better I became with it and the realisation that I hopefully will have a good many years left to live.
All the best with your treatment. I ended up with a bit of nerve damaged in one foot and a couple of blood clots from the chemo, but tolerated it well, with only the usual dexamethasone sleep issues.
Stay positive. It really does get better and we have a great health system here.
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Anonymous
Re: Diagnosed February 2014
Thanks, I'm in Darwin and have to go to Adelaide for the transplant. Hoping for a long remission and no need for maintenance therapy so I can have a sort of a normal life one my bones are fixed. Going for a cure is what they said so I need to find out what exactly they mean, I assume it is a long remission with more options down the track from what I have read on here, unless of course they are now thinking allo sct, wait and see I suppose.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Diagnosed February 2014
Glad you can join all of us here in the forum, Paul ... even if it would be nice if the circumstances were a bit different! 
I'm curious as to what your initial treatment regimen was. Was it also VCD, like Anonymous had? My impression from postings elsewhere here in the forum is that VCD is used relatively often these days in Australia as initial treatment.
I suspect that your doctors are probably planning on doing an allo transplant as your second transplant if they are talking about a cure. It would make sense given your age. I definitely would try to find out more what their plans are because, if they include an allo, you want to start reading up about it and try to learn more about the best way to do it. There are a couple of people here in the forum (Mark and LibbyC come to mind) who have done allo transplants and have posted a lot here about their experiences.
I'm curious as to what your initial treatment regimen was. Was it also VCD, like Anonymous had? My impression from postings elsewhere here in the forum is that VCD is used relatively often these days in Australia as initial treatment.
I suspect that your doctors are probably planning on doing an allo transplant as your second transplant if they are talking about a cure. It would make sense given your age. I definitely would try to find out more what their plans are because, if they include an allo, you want to start reading up about it and try to learn more about the best way to do it. There are a couple of people here in the forum (Mark and LibbyC come to mind) who have done allo transplants and have posted a lot here about their experiences.
Re: Diagnosed February 2014
Gday Paul,
All of this is a lot to get your head around. I am still struggling after 6 months. What I have taken on as my own philosophy is to take it as it comes. Trying to work out what it all means and what bits of information are relevant to me or you seems somewhat impossible.
I too am on the young side to have this disease. I can't but wonder or hope that all the bad stats are geared around the older generation that have this. (No offence intended to the older sufferers). Truthfully though, only time will tell in all of our situations. In the mean time, I guess we all have to find something that can somehow distract us from this constant shadow that hangs over our head due to that lack of definitive answers. How long is a piece of string?
The toughest thing we need to do is not the treatments, as painful and uncomfortable as they can be. It's somehow -- and I am not there yet -- learning how to live again. Enjoy the happy moments without wondering if you will see them again. Not waste time and energy wondering what will be. It will happen if you worry. It will happen if you don't. So don't worry.
As for financial worries etc. The Cancer Council have a lot of helpful things on there site which is relevant to us here in Australia.
Having said that, our medical system here in Oz is to my experience pretty good. I have elected to trust my doctors and go with their advice.
Stay strong. Vic
All of this is a lot to get your head around. I am still struggling after 6 months. What I have taken on as my own philosophy is to take it as it comes. Trying to work out what it all means and what bits of information are relevant to me or you seems somewhat impossible.
I too am on the young side to have this disease. I can't but wonder or hope that all the bad stats are geared around the older generation that have this. (No offence intended to the older sufferers). Truthfully though, only time will tell in all of our situations. In the mean time, I guess we all have to find something that can somehow distract us from this constant shadow that hangs over our head due to that lack of definitive answers. How long is a piece of string?
The toughest thing we need to do is not the treatments, as painful and uncomfortable as they can be. It's somehow -- and I am not there yet -- learning how to live again. Enjoy the happy moments without wondering if you will see them again. Not waste time and energy wondering what will be. It will happen if you worry. It will happen if you don't. So don't worry.
As for financial worries etc. The Cancer Council have a lot of helpful things on there site which is relevant to us here in Australia.
Having said that, our medical system here in Oz is to my experience pretty good. I have elected to trust my doctors and go with their advice.
Stay strong. Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Diagnosed February 2014
Gday Paul, Andy from Perth here, and welcome and sorry to see you join our club. Like others from Oz have said, I think our health system is actually one of the better ones and although I am only on cycle 2 of the induction therapy (VCD) I am very confident and comfortable with the medical advise and treatment I am receiving.
In my case I have a pretty aggressive form of myeloma and the doctors want to get me in for stem cell harvest after 3 cycles (in late May), then go one more cycle before the AutoSCT in June. Currently I am feeling heaps better than I did, and the ribs have stopped hurting and I don't feel run down and weary all the time, although the dex can make me a bit moody sometimes and cause me to stay awake half the night playing computer games (its nice to have an excuse). They have also got me on Zometa to harden up the damaged bones. I found this article interesting which is the guide to treatment in Australia which the doctors follow.
http://www.myeloma.org.au/LinkClick.aspx?fileticket=55A0pOby0WQ%3d&tabid=40
The first thing I did after hearing the word myeloma for the first time was to spend days on the internet trying to come to grips with every aspect of this strange cancer, the terminology, the treatment options, the drugs available and you soon learn enough to become a pocket expert and carry out an informed discussion with your health care providers and this particular website I have found to be a real goldmine of information and experience. One major pitfall of all this is that you get to see a lot of outdated prognosis statistics from ten or twenty years ago around the internet and the outlook was a lot more gloomy then. Don't let it grind you down.
Keep your chin up mate, you're a young bloke, you're in good hands in a great country and you have got every reason to be optimistic. Keep us posted on how things go. Andy
In my case I have a pretty aggressive form of myeloma and the doctors want to get me in for stem cell harvest after 3 cycles (in late May), then go one more cycle before the AutoSCT in June. Currently I am feeling heaps better than I did, and the ribs have stopped hurting and I don't feel run down and weary all the time, although the dex can make me a bit moody sometimes and cause me to stay awake half the night playing computer games (its nice to have an excuse). They have also got me on Zometa to harden up the damaged bones. I found this article interesting which is the guide to treatment in Australia which the doctors follow.
http://www.myeloma.org.au/LinkClick.aspx?fileticket=55A0pOby0WQ%3d&tabid=40
The first thing I did after hearing the word myeloma for the first time was to spend days on the internet trying to come to grips with every aspect of this strange cancer, the terminology, the treatment options, the drugs available and you soon learn enough to become a pocket expert and carry out an informed discussion with your health care providers and this particular website I have found to be a real goldmine of information and experience. One major pitfall of all this is that you get to see a lot of outdated prognosis statistics from ten or twenty years ago around the internet and the outlook was a lot more gloomy then. Don't let it grind you down.
Keep your chin up mate, you're a young bloke, you're in good hands in a great country and you have got every reason to be optimistic. Keep us posted on how things go. Andy
Last edited by MattSchtick on Sun Apr 20, 2014 8:08 pm, edited 1 time in total.
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MattSchtick - Name: Andy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Feb27 2014
- Age at diagnosis: 61
Re: Diagnosed February 2014
Thanks for the replies everyone, good to know I'm not alone but not good to share the cancer though. The regime I'm on sounds pretty similar to yours Matt, four cycles of chemo, yes I think it is VD but will have to check, to be followed by an auto SCT. I know what you mean about the steroids, up all night and moody. Too young both of us Vic, still it could be worse, initially mine looked like a metastatic bone cancer with a lung primary, multiple myeloma is a better option than that death sentence. Cancer Council has been great as has the Leukaemia Foundation.
I am slowly coming to grips with the disease, did a stack of reading up front and now try and cherry pick the info that seems to best apply to me. The prognosis side of it is the most confusing as it doesn't really cover what is likely to happen or when. The bones have me really concerned as well as I understand it nothing can be done about the damage until after my SCT. Will the lesions go away, will the bones heal, I have a scoliosis now, will that go away or do I need rods? Lots of questions, not many answers yet.
What I do know is, although I have a lot of localised bone damage, the disease does not appear to have spread with it being undetectable in a biopsy on my pelvis and overall levels being very low in my blood. But for the tumours and lesions in my vertebras and ribs the cancer would have been very difficult to diagnose.
This site has been great, I have been visiting it since February and follow it on Facebook. Thought it was about time to sign up and join in the conversation. It would be interesting to know how or where I got the cancer, or even how long I have had it. Lots questions, not many answers.
I am slowly coming to grips with the disease, did a stack of reading up front and now try and cherry pick the info that seems to best apply to me. The prognosis side of it is the most confusing as it doesn't really cover what is likely to happen or when. The bones have me really concerned as well as I understand it nothing can be done about the damage until after my SCT. Will the lesions go away, will the bones heal, I have a scoliosis now, will that go away or do I need rods? Lots of questions, not many answers yet.
What I do know is, although I have a lot of localised bone damage, the disease does not appear to have spread with it being undetectable in a biopsy on my pelvis and overall levels being very low in my blood. But for the tumours and lesions in my vertebras and ribs the cancer would have been very difficult to diagnose.
This site has been great, I have been visiting it since February and follow it on Facebook. Thought it was about time to sign up and join in the conversation. It would be interesting to know how or where I got the cancer, or even how long I have had it. Lots questions, not many answers.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
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