Hi Laetetia, Thanks very much for filling us in on the way the Australian health care system is set up. I hope that once you are 'in the system' in the public one you get your appointments and treatments in a timely fashion? in Calgary, our cancer centre is not 'free standing', i.e. a separate hospital, either, but it provides very good care and all of our cancer patients are treated there. It is literally attached by a long hallway to a big hospital! I think that that is a function of population density also. In the US, there are whole institutions just dedicated to multiple myeloma, but there wouldn't be enough patients here for that situation. As usual, fund raising is going on to help to provide a new cancer building, and it is in the works.

We just loved visiting Sydney a few times. My husband has family there and they graciously hosted us. It has just got to be one of the most beautiful cities in the world, and with a climate to match! The first time we went as a family was when my older daughter was playing flute in her high school band and they went on a tour, which included Brisbane, Newcastle and Sydney. Have also visited Canberra, the lovely capitol of AU. Also, there are just hundreds of young Australians working at the ski resorts in Western Canada....it is very usual to hear their distinctive accents in the Banff, Lake Louise and Whistler areas!

On the topic of sub=Q Velcade, you can read it just got approved here! I think it is great when another treatment comes on the scene...that will give the oncologists greater flexibility when devising treatment for patients. I was on the 'regular' Velcade before and the neuropathy issue wasn't too bad, and now I see that sometimes it is just given by IV once a week, instead of twice a week, as when I had it.

Even if your local support group meets in the daytime and it is not convenient for you, might they have a website, or other evening functions sometimes? They may be able to fill you in on 'advocacy' issues, regarding the approval of drugs like 'Revlimid'. There is a power in blocks of voters putting pressure on public systems, nest-ce pas?

Yes. All the treatments are at the public hospital. There are a few public hospitals with specialised cancer divisions and my partner goes to one of those - fortunately close to our home. I'm not sure on the Revlimid issue. I look up information on the pharmaceutical benefits scheme to see what guidelines are for whatever treatment is given but I know that the first line of treatment in all cases is thalidomide and only if that fails or the side effects aren't bearable are other drugs permitted to be applied for. I think they apply to the federal government for approval. We can pay money for private cover or every person has to pay a percentage of their wage - usually 1.5% depending on your salary level for medicare - which is our public health system. The difference is with private cover you pay a lot of money to the medical fund for cover and then you usually get billed a heap of money for everything over the approved charge rate (and most doctors charge a lot more than the charge level set by medicare). So you get to choose your own doctor and you get helped quicker but you end up a lot more out of pocket. If you are not in a private medical fund and go public then you are on a waitlist so for certain procedures that aren't considered life threateningly urgent, you could wait many months or often years to have the operation or get the procedure done that you need. You are given a specialist or doctor appointed by the hospital.

Hi Laetitia.....interesting to read your comments about the Australian health care availability for myeloma patients. Do you take your treatments at a hospital now or at an infusion centre? Maybe you should ask your oncologist about what he/she thinks about the thalomid vs. Revlimid issue. They might be lobbying on their patients' behalf and need you and others to write in to the health administration to gain access to a new drug. Or is Revlimid only approved for 'relapsed' patients and not for 'newly diagnosed' patients? In that case, the issue goes up to another level. would be interested to hear about it, since we in Canada also have universal health care and need our drugs to be approved provincially. I understand that your system is a combo of 'universal' plus 'private insured'. Hope that all the patients get good care.

Don't you love computers ! In the middle of my post it decides to turn itself off then when I turn it back on it says it restarted the computer as it installed updates! Could have warned me first ! Anyway, here I go starting over.
Thanks so much for the detailed information. Its so great to have a site like this so people can share information and experiences so we can all make more informed decisions and compare notes.
My partner has big red splotches around each injection site for the sq Velcade. It was only when he went to twice weekly that he started to feel some pain at the site but he said it was mild and tolerable. It isn't flaky or peeling so he's handled it well.
He spoke to his doctor about doing IV Velcade alone without the cytoxan and then swapping back to sq after that to avoid risk or severity of PN. The doctor refused. We are in Sydney Australia and I don't know that we have specialist cancer centres here. I only know of one in Melbourne - that's a nine to ten hour drive from where we live. His doctor is well respected but reluctant to try new therapies. And then of course there is the funding restrictions. E.g patients are not allowed to have another therapy until they fail on thalidomide so the doctors have no choice but to prescribe thalidomide as a first treatment. Joe, it sounds like you have a hard time with the PN aspect. I'm glad some of the supplements help. I have my partner taking 1000 mcg of B12 - one in the morning, one at night. We noticed it did help reduce his m-spike initially, then keep it stable. If he stops, it goes up. At the moment his blood sugar level is all over the place (he takes tablets for diabetes), so we are trying to control that as its obviously affected by the Velcade. I noticed a few people in the forum have mentioned that after a time the Velcade seems to stop working. I'm not sure where you are but by Australian standards, 2.7 would not be treated so I'm thinking its probably equivalent to 27 on our readings. My partner's latest reading was 14.7. Two years ago it was 10.7. It doesn't seem to be rising in great numbers although it is rising faster than it has in the past 10 years. Ultimately we focus on quality of life, not just quantity but the government focuses on dollars and makes it hard to choose your own treatments if you want the financial aid.

Mama4242 wrote:
> My husband had terrible local reactions from the subQ Velcade. The first
> couple of times there was no reaction whatsoever. Then we noticed it was a
> little red at the injection site. The following week it was VERY red. It
> was about six inches all around and felt hot to the touch. It ultimately
> peeled. It was quite nasty. He then went back to the IV. After a few
> weeks, he tried subQ again--same thing happened. He was very disappointed
> because his neuropathy is far worse in his hands with the IV Velcade.
> Anyone else have this happen?

I am experiencing something very simiar. A widening red area around the injection site that flakes, like dry skin over time. I am applying cream to the area to keep it lubricated. It does not itch and is not painful but appears to be like an alergic reaction. I only get the SQ shots every 2 weeks so I am monitoring it and will inform my Oncologist when I go back in two weeks.
I started tthe SQ shots in January and did not notice this increasing red area with my initital shots.

Ron H

I had neuropathy in feet for 2 years before I was diagnosed in June 2007 with multiple myeloma. I took 4 cycles of 1.3 Velcade and dex as my induction therapy before Stem Cell Transplant in Oct. 2007. I went without any treatment for 30 months following SCT.

After trying Revlimid and pomalidomide for periods of time by late summer 2011 my m-spike was 2.7. In Oct 2011 we started Velcade again. 1.3 Velcade/dex - once a week for 3 weeks then 1 week off. After one cycle it cut m- spike in half, but neuropathy was bad so we reduced dose to 1.0. I should mention that for past 3 1/2 years I have been taking Gabapenten (300mg 3 time a day) for the neuropathy and it had helped to a degree.

My return to Velcade really spiked the neuropathy so on 2nd cycle we reduced dose to 1.0 and the m spike only dropped from 1.5 to 1.3. We did not know if it was the dose reduction or the myeloma's resistance to Velcade. I pleaded to go with sub q but both my docs were too conservative. This was November 2011. It was on 4th cycle (early January 2012) that we switched to sub q and then when neuropathy was less we brought Velcade dose back up to 1.3. I have had one blood result where m-spike held at 2.5 (it had increased over course of several 1.0 dose cycles)
I have now completed 6 cycles. 1 (most recent) has been Cytoxin -1200mg./1.3Vel/20mg dex)5 were just Velcade and dex. 2 have been SubQ , and the initial 4 were IV. Sorry to make it so complicated.
I can say that in my case the Velcade stopped working very well 2 or 3 cycles before we went to sub q. I have a specialist in nearby city who makes all the decisions -she is very open to my feedback -and my treatment is administered by local oncologist who welcomes the expertise from the specialist.
The evidence presented to FDA was pretty clear that Sub Q yielded same results as IV Velcade, but I suppose in an individual case it could be a factor. Likewise I thought it was established fact that once a week Velcade worked just as well as twice a week.

I should note that last fall I began taking a nerve support supplement (WSN Nerve Support Formula) It has massive dose of B12 along with Thiamine and B2, B6, some folic acid and D3) I take 2 capsules twice a day -with food - and it really helped after only a week. The burning changed to a welcome numbness. Recently I have added Acetyll-Carnitine & Alpha Lipoic Acid 650 mg twice a day, and it seems to have further reduced the burning. I get both at Amazon. The Nerve formula is expensive ($45. per month) but I was willing to try anything.

I would reccomend calling the IMF (international Myeloma Foundation) and they recommend nearest specialist to contact in your area.I would suggest being very confident in expressing to your doctor that you would feel more comfortable hearing another opinion.Good luck. I hope this helps? Joe

Thanks Joe. I'm quite scared of the PN on twice weekly IV Velcade. I thought everyone was stopping this too. I'm not sure if we should be continuing with this doctor or going elsewhere. From what I'm reading the people on the Sq Velcade don't seem to be lowering their M spike by any significant levels. Here we get the Velcade free for 8 cycles but if you don't show a 50% drop in your M spike, you aren't allowed to have any more, which is why the doctor is starting to stress I think and wants to go to the IV, cytoxan option and hit it hard.

How long were you initially treated with IV Velcade ? Was it once a week ? How many weeks before the PN set in ?

I started sub Q a couple weeks before FDA approaval. Once a week 1.3 dose for 3 weeks then one week off. Very noticable difference. Reduced effect of neuropathy in feet, except for first day. On forth day when Dex has worn off I did feel the burning come back in feet and somewhat up my legs, but that gone by next dose. On IV the pain had begun to come up ankles making it hard to walk on second and third day.

So at first It seemed like the sub q at the least delayed the neuropathy, but now , after 2 plus cycles it seems to be helping more than that. My doctors admitted they were being too conservative by earlier resistance. I think your doctor may be an outlier in terms of his continued resistance. I am assuming that peripheral neuropathy is your concern.

By the way I did not realize anyone was still giving Velcade twice a week. After 5 cycles of Vel and dex the m spike was merely holding steady so we added 1200mg of cytoxin with the Velcade and dex and will find out later this month if it is working. Obviously I am not a doctor and do not know details or context of your treatment. Good luck standing up to your Doctor.See Pat K's recent blog about getting second opinions. Joe

Well, doctor says sq Velcade doesn't seem to be doing much. Nothing going down, although he was only on the 1, 4, 8, 11 cycle of injections for one cycle and before than only once a week, so I think its a bit early to judge. His doctor is determined to swap him onto IV on the same cycle and wants to add cyclophosphamide. His doctor has no other patients on Sq Velcade and although another doctor in the hospital does, he says they do not discuss results and basically he knows nothing about how the sq goes and he wants him on the IV and that is that. This specialist is supposed to be highly respected in his field yet he doesn't talk to the other doctors at the hospital and compare notes on the effectiveness of treatments ? Not very happy at the moment.

We were wondering whether to insist on another four of the 21 days cycles of the Sq Velcade to see if it works, or agree to go IV but ask him to leave the Cyclophosphamide off for now to see if the IV works on its own first.

As my partner still works he can't attend the support groups here as those meetings are in the middle of the day and we really haven't been able to talk to anyone else that might be a patient on sq Velcade to get an idea of what results others were getting.

Hi Laeteia!

Yes. typically at Vitamin Shoppe or GNC...you can also find them on line.