[Justine]

Why can't I get ... what you get?

by Justine on Sat Sep 21, 2013 1:28 pm

Hello fellow Beaconers ,

I am based in Sydney, Australia & was recently diagnosed with multiple myeloma at 42years young. My haemalologist has given me life expectency between 6-12 months at stage 3 with significant bone lesions in both arms but ok at moment with everything else. My bone marrow biopsy showed 52% multiple myeloma para-protein, have not been told what an m-spike is, different terminology between our countries?

I would like to know why multiple myeloma is seen as a death sentence here whilst in America it's perceived with more hope to at least extend your life with various treatments & access to Revlimid etc.

Why don't we get Revlimid here or are they hiding it from me

I have been advised that a STC is my only chance in December but know nothing about stem cell harvesting....what the??? How long in hospital, is it painful (I'm a wuss), how damn sick am I going to get with pre-op chemo etc...i dont care if my hair falls out but i better buy a cap so my kids wont be scared, if this is done over December & Xmas I have to plan for my 3 children to be cared for, I'm a sole mother to an 8 month daughter, 23 month old son & 6 year old son ... Yes, just quietly, I am a legend sometimes

My treatment plan at present is Velcade, dex, cyclophosphamide.

So where is the Rev people & should I sell everything for a ticket to the states in the near future or investigate clinical trials here, where do I start, I don't have much support you see, emotionally speaking....probably shows

Yes, I realise I can do nothing until I have a follow-up consult about this mess that is now my life, but I did plan my funeral this week so my mother would not be able to play the Beach Boys & spend a fortune on purple roses....Bless her, she has the best of intentions but that would shock me back to life

Appreciating any insights or feedback of your own experiences thanks & absolutely no insult intended to said Beach Boys.

I WANT TO LIVE!!!!!

[JimNY]

Re: Why can't I get ... what you get?

by JimNY on Sat Sep 21, 2013 2:32 pm

Hi Justine,

Very sorry to hear about all your frustrations and challenges.

Without knowing more about your particular situation, it's difficult to know why your doctor told you your life expectancy is only 6-12 months. However, it does seem quite low, even if you have what is called "high-risk" myeloma.

Revlimid may not be available to newly diagnosed myeloma patients in Australia because it's not yet officially approved for that use, and also perhaps for cost reasons.

However, Velcade+cyclophosphamide+dex is, in fact, a rather powerful drug combination for treating myeloma. It may not be quite as powerful as, say, Velcade+Revlimid+dex. But it's still pretty powerful.

Regarding patient's experience with stem cell transplants, you can read a lot of them in this forum thread:

https://myelomabeacon.org/forum/stem-cell-transplant-your-experiences-t2292.html

You can find more about how myeloma specialists currently classify myeloma patients in this recent article here at the Beacon:

https://myelomabeacon.org/news/2013/09/13/imwg-risk-stratification-multiple-myeloma/

Hope this information helps. There are a lot of Australian myeloma patients here, so I wouldn't be surprised if a number of them also share their comments on your questions.

By the way, are you being seen by a physician who specializes in multiple myeloma. If not, you may want to see if you can schedule an appointment with one, just to get a second opinion about your diagnosis and treatment. Given that you're in Sydney, you must have a number of myeloma specialists to choose from.

[lys2012]

Re: Why can't I get ... what you get?

by lys2012 on Sat Sep 21, 2013 7:17 pm

I would not worry that much about not getting Rev up front. You are getting Velcade (which is from another family of Novel therapy drugs) up front ant it was a big game changer chemo for multiple myeloma. I have never taken Rev. I did Velcade Dex and Cyclophosphomide before my transplant and it was very effective. I was stage 2, with a very high M spike, and about 50 percent marrow involvement. I have been in remission for three years now!

[LibbyC]

Re: Why can't I get ... what you get?

by LibbyC on Sat Sep 21, 2013 8:16 pm

Hi Justine,
I replied to your other post "Young mother in Australia" I don't know whether you read my reply or not.

"Why don't we get Revlimid here or are they hiding it from me "

Revlimid is available in Australia and has been for at least 5 years. Treatment is however pre-determined and there are certain drug regimens they will go through first. This is on PBS so if you have a concession card it will mean ~$5.50 for the months supply. Of course if you want to pay for it yourself it will cost you ~ $28,000 for the month (that was 4 years ago) it might be slightly cheaper now.

I have never had rev and I am currently in remission.

"I would like to know why multiple myeloma is seen as a death sentence here whilst in America it's perceived with more hope to at least extend your life with various treatments & access to Revlimid etc."

It can get you down with such a negative outlook. Having said that I would prefer to know what the problem is up front and then try and work out a solution rather than being treated then find out the treatment is only finite. Even though they will tell you it is a terminal condition they will still treat you. It also means that you may be eligible for a disability pension due to your "terminal condition" - you might need to check with Centrelink for that.

Multiple myeloma is a multiple disease so the prognosis will vary. Knowing what your cytogenetics are is a big help. Do you know what yours are?

"multiple myeloma para-protein, have not been told what an m-spike is, different terminology between our countries?"

M-spike refers to the monoclonal band of the immunoglobulin that is essentially coming from the myeloma cells. In the states it is usually in g/dL . In Australia it is called para-protein and is usually measured in g/L. So someone in the states may have an M-spike of 3.4 g/dL which is equivalent to a para-protein level of 34 g/L.

"My treatment plan at present is Velcade, dex, cyclophosphamide."

You are lucky with this treatment. Velcade wasn't on the PBS when I started my treatment and I had to wait - well I could have paid the $40000 for the months supply but funnily enough I didn't.

If you don't want to sing the Beach Boys, what about some of these

Chumbawamba - Tubthumping "I get knocked down but I get up again....."
Gloria Gaynor - I Will Survive "At first I was afraid I was petrified ......I will survive"
Not Giving In - cant remember who sings it. "Noooo not giving in"

If you want anymore info send me a private message or you could read some of my posts regarding my story.

All the best,
Libby

[Colin]

Re: Why can't I get ... what you get?

by Colin on Sun Sep 22, 2013 12:45 am

I understand where you're coming from Justine.

The reality is that access to Revlimid in Australia is much more limited compared to the States, where is it used regularly as initial therapy.

You'll find a description of the Australian (PBS) restrictions on Revlimid use at

http://www.pbs.gov.au/medicine/item/5786M-9645P

Click on the red text "Authority Required" for details of the restrictions. There are lots of them. I'll summarize just some of the key ones:

1. Revlimid can only be used alone or in combination with dexamethasone
2. The patient must have had one prior therapy
3. The patient must have undergone a stem cell transplant, or be ineligible for one
4. The patient must have failed thalidomide therapy that was attempted for at least one 4-week cycle, or experienced no more than a minimal response after 8 weeks of thalidomide therapy
5. The patient must not be receiving Velcade

Yeah, it's great that you can get it cheap once you qualify for it. Once you qualify for it.

[terryl1]

Re: Why can't I get ... what you get?

by terryl1 on Sun Sep 22, 2013 6:19 am

Hi Justine, without knowing all of the particulars of your case, I think it is horrible that your doctor mentioned a specific life expectancy for you in such a cavalier fashion. He needs to go back to medical school for a refresher course. I have met several myeloma survivors who were stage three with heavy bone and kidney involvement and, guess what?, they are still here years later doing well and seeing their kids go to school, graduate, etc. Sorry, but I think that doctor was a jerk. I myself had 80% plasma cell involvement in my bone marrow and it is now "clean". Where I am treated in the US, the NIH near Washington, DC, I have met two Australians who were admitted into clinical trials for their particular cancers which apparently couldn't be treated in Australia. However, your proposed treatment plan seems good and I hope you contact Libby C. in Australia. She has great advice for everyone and she knows the Australian system inside and out. Good luck! Terry L.

[JimNY]

Re: Why can't I get ... what you get?

by JimNY on Sun Sep 22, 2013 7:59 am

LibbyC - The prices that you quote seem really high ... too high to be true. In the U.S., Revlimid costs maybe $10,000 per month at the pharmacy. Velcade costs anywhere from maybe 10-20% less than that, to about half of that, depending on what dose you take.

I guess it's possible that Australia puts extremely high tariffs on imported drugs purchased outside the PBS. But I doubt that's the case.

In fact, the link Colin provided suggests the cost of Revlimid in Australia is lower than what it is in the U.S., which isn't surprising, because the U.S. typically has the highest prices for just about any drug.

Maybe you were thinking about cost per course of therapy, rather than cost per month?

[LibbyC]

Re: Why can't I get ... what you get?

by LibbyC on Sun Sep 22, 2013 9:51 am

Hi JimNY,
You would think the prices were too high wouldn't you - but guess what, they weren't. The prices may have come down since my treatment. I had 4 cycles of Velcade in Dec 2010/Jan2011. Each cycle was 21 days, I had injections of Velcade on Days 1, 4, 7 and 11. When the pharmacist came upstairs to day oncology with the Velcade vial she told the nurse not to stuff it up coz it was ~$7000 worth. So the one injection was $7000! As I know the pharmacist I questioned her about the cost. Total treatment cost for the Velcade would have been 16 X $7000 (~112,000). I think Velcade went on to the PBS ~ 2 months prior to me being "allowed' to use it as a therapy. At the time Velcade was only allowed for use through the PBS if (I cant remember all of them) thalidomide had failed and it was more than 9 months since treatment, I think failure of the SCT was also in there. When I did get Velcade I was allowed to have 4 cycles of it and the next 4 cycles were subject to my paraprotein decreasing by 50% - well it didn't. I only had the 4 cycles. If I wanted more I needed to pay for it myself.

The cost of Revlimid of $28000 was in ~May 2009 prior to it being on the PBS. Who knows what it is now. I never had rev but I did have thalidomide. The cost of a months supply of thalidomide off the PBS (remember this drug has been around for a long time) was relatively cheap only ~$1600. Pharmacy supplied medication in Australia has two prices on the prescription sticker when you receive the medication. One is the price I pay and the other is the "actual" cost. So for my months supply of eg Cyclosporin (Neoral) of 50mg I pay the PBS rate of ~$35 or $5.50 on concession or $0 if I have gone over a safety net. The actual price (nov 2012 prices) was $319.62.

You wrote "I guess it's possible that Australia puts extremely high tariffs on imported drugs purchased outside the PBS. But I doubt that's the case."

Who knows why the pharmaceuticals are so expensive. But they are not the only products that are more expensive - books, music, white goods etc.... Below is from a 2011 article when the Aussie dollar was ~$1.05 US.

A Lenovo laptop is on special at $1979 on the company's Australia website but costs $US1199 on its US site. An iTunes album costs $17.99 in the Australian iTunes store but $US9.99 in the US iTunes store. - See more at: http://www.theaustralian.com.au/technology/personal-tech/why-australians-are-paying-higher-prices-for-technology/story-e6frgazf-1226074497752#sthash.ARtslwny.dpuf

[darnold]

Re: Why can't I get ... what you get?

by darnold on Sun Sep 22, 2013 12:35 pm

Hi Justine. I was where you are four years ago -- stage 3, bone damage in my ribs and a few other places, and the beginning of kidney damage. There were not good statistics then for younger people who developed multiple myeloma. In fact, the stats showed we had 2 years or so. I want you to know that is NOT true anymore.

My oncologist told me what the stats were -- but also told me that those stats were for an older population, who generally had other ailments, such as heart problems and diabetes. I was younger (52 when diagnosed) and otherwise healthy. And, it turned out, my chromosome changes were all favorable.

I took thalidomide, with dexamethasone, as my initial treatment, followed by a SCT. Revlimid was my maintenance drug, and I had a hard time with it. I was in complete remission for 2 1/2 years. Now, I have a very low M-spike, but I could live that way for the rest of my life. I've been off Revlimid since January, and my oncologist is now just monitoring my blood counts, light chains, proteins, and kidney function for any sign that the myeloma has become more active. If it does, I'll try Velcade, or the two new drugs, or a combo.

Please, please, please, don't believe the statistics. And maybe find a different oncologist.

Dana

[Justine]

Re: Why can't I get ... what you get?

by Justine on Mon Sep 23, 2013 6:31 am

Much appreciation to everybody that took the time to leave me a reply, it has really helped get my head around it all.

Xx Justine