Hi,
I'm a 60 year old male and I was diagnosed with multiple myeloma just over a year ago. Initially it was thought to be a singularity in the clavicle, which was treated with intensive radiotherapy. I then went home for 3 months and then went back for a PET scan and so on. The multiple myeloma was found in the spine, pelvis, skull and right arm.
So, off down to Adelaide, Australia for a stem cell transplant, which went well apparently and then onto treatment with monthly Zometa, daily thalidomide, plus all the usual stuff.
One interesting outcome was the fact that I have a psychotic reaction to steroids, so they're off the menu.
My problem and hence the decision that must be made is that whilst I have been treated with excellent care in Darwin, Australia, my home is in northern Thailand on the Laos / Thai border. This is where my wife and I have lived for over 10 years and where I want to stay.
Prior to my diagnosis, I would work in education in remote communities in the Northern Territory for 3-4 months at a time, and then come home for 6 months. An excellent arrangement at that time.
The treatment in Australia has been free under the Medicare system, to which I am fortunate enough to be entitled. For the last 6 months I have been flying back to Darwin every month for Zometa, blood tests, and to pick up the various drugs.
The financial burden has become excessive and it's time to reevaluate the situation.
Zometa is expensive on the open market and so are flights to get it. What would happen if I simply stopped taking it?
Thalidomide seems to be unavailable in Thailand, so what if I stopped taking that?
Pain control, morphine, is readily available in Thailand, so that's not a problem.
The splendid staff in Darwin are pretty hesitant to even discuss the subject, and I get the feeling that it's a bit of a taboo subject – nearly as taboo as giving me any kind of prognosis, though one doctor let slip that 2-4 years was likely.
So, do I blow all our savings on flights backwards and forwards to Darwin, or simply stop taking the medication and let nature take its course?
I'll need to decide in the next couple of weeks.
Any thoughts or suggestion gratefully received.
cheers
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3 posts
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Plwch - Name: plwch
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2015
- Age at diagnosis: 60
Re: Can I stop my thalidomide & Zometa treatments?
Welcome to the forum, plwch.
If Zometa is too expensive, perhaps you could consider switching to Aredia (pamidronate), a drug that is in the same family of drugs, known as bisphosphonates, as Zometa.
Also, have you looked into whether you can use generic Zometa, which would go by the generic name of the drug, "zoledronic acid". I believe generic forms of Zometa are now available in most countries in the world.
Also, instead of dropping Zometa completely, you could reduce how often you get the drug to once every three months, instead of every month. There is a new study out that suggests that Zometa every three months is just as effect as Zometa every month. See this posting in the forum for more information on the study.
As for thalidomide, if you halt your treatment with it -- which is effectively maintenance therapy -- your myeloma is likely to relapse sooner. However, as long as you make sure you are treated with thalidomide again at relapse, it's unclear that your overall survival will really be affected.
As best I can recall, there really hasn't been much new research into thalidomide maintenance therapy in the past few years. So this article from 2012, which discusses thalidomide maintenance therapy as well as other types of maintenance, will have some information that may help you:
"Experts Publish Consensus Statement On Maintenance Therapy In Multiple Myeloma," The Myeloma Beacon, Feb 1, 2012
Good luck!
If Zometa is too expensive, perhaps you could consider switching to Aredia (pamidronate), a drug that is in the same family of drugs, known as bisphosphonates, as Zometa.
Also, have you looked into whether you can use generic Zometa, which would go by the generic name of the drug, "zoledronic acid". I believe generic forms of Zometa are now available in most countries in the world.
Also, instead of dropping Zometa completely, you could reduce how often you get the drug to once every three months, instead of every month. There is a new study out that suggests that Zometa every three months is just as effect as Zometa every month. See this posting in the forum for more information on the study.
As for thalidomide, if you halt your treatment with it -- which is effectively maintenance therapy -- your myeloma is likely to relapse sooner. However, as long as you make sure you are treated with thalidomide again at relapse, it's unclear that your overall survival will really be affected.
As best I can recall, there really hasn't been much new research into thalidomide maintenance therapy in the past few years. So this article from 2012, which discusses thalidomide maintenance therapy as well as other types of maintenance, will have some information that may help you:
"Experts Publish Consensus Statement On Maintenance Therapy In Multiple Myeloma," The Myeloma Beacon, Feb 1, 2012
Good luck!
Re: Can I stop my thalidomide & Zometa treatments?
Hi Terry,
Thank you so much for your reply and the information therein.
Yes, I read the article about Zometa treatments every three months and passed it on to my doctors, who have agreed, albeit with reservations, to go for it. Excellent news for me.
As far as the thalidomide is concerned, they can only give me a month's supply each quarter that I make a trip. I suggested I take 1 x 50 mg every 3 days, and they seemed to think it was worth trying.
I wondered whether it was worth suggesting to them that I increase the dose to 100 mg every 3 days?
I can discuss this with them when I see them again in March.
Thanks again for your advice and help.
All the best.
Plwch.
Thank you so much for your reply and the information therein.
Yes, I read the article about Zometa treatments every three months and passed it on to my doctors, who have agreed, albeit with reservations, to go for it. Excellent news for me.
As far as the thalidomide is concerned, they can only give me a month's supply each quarter that I make a trip. I suggested I take 1 x 50 mg every 3 days, and they seemed to think it was worth trying.
I wondered whether it was worth suggesting to them that I increase the dose to 100 mg every 3 days?
I can discuss this with them when I see them again in March.
Thanks again for your advice and help.
All the best.
Plwch.
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Plwch - Name: plwch
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2015
- Age at diagnosis: 60
3 posts
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