[Wayne]

Where to now?

by Wayne on Mon Mar 30, 2015 7:24 am

Hi, I am writing on behalf of my husband, Wayne.

He was diagnosed in November, 2013. Did 4 cycles of VCD (Velcade, cyclophosphamide, and dex), then went for auto transplant in May 2014. Relapsed in July, 2014 with extramedullary myeloma, started treatment with DT-PACE in September, 2014; did 4 cycles, but relapsed again during 4th cycle.

Used radiotherapy to reduce tumours on his back, then started PAD, first cycle without the doxorubicin due to radiation, 2nd cycle with pegylated doxorubicin (Doxil, Caelyx), trying to get stable disease to have haplo allo transplant.

Any ideas? My husband is 60 years old and otherwise reasonably healthy.

(PACE = cisplatin, doxorubicin, cyclophosphamide, and etoposide; PAD = Velcade, doxorubicin, and dexamethasone)

[Cheryl G]

Re: Where to now?

by Cheryl G on Mon Mar 30, 2015 7:11 pm

I'm very sorry to hear about all the problems Wayne has been having getting his myeloma under control.

I see that you are in Australia. You should find out if Wayne can be treated with Revlimid or Pomalyst, preferably in combination with Velcade and dexamethasone, as a treatment option.

I don't believe Kyprolis (carfilzomib) is approved in Australia yet, so, if things don't work out, or don't seem promising, with Revlimid or Pomalyst, then the next option to consider may be a clinical trial. There are a number of new myeloma drugs that are being researched, and a number of these may be available to Wayne through a trial in Australia.

I would check, for example, to see if he could be treated with the combination of Pomalyst (pomalidomide), Kyprolis (carfilzomib), and dexamethasone. If that's not possible, then there may be trials involving the monoclonal antibody therapies (daratumumab, SAR650984, or elotuzumab) in combination with other myeloma drugs.

Other options include Farydak (panobinostat) or ARRY-520 (filanesib) -- again, most likely in combination with an existing myeloma drug.

This link

https://clinicaltrials.gov/ct2/results?recr=Open&cond=myeloma&cntry1=PA%3AAU

will take you to a list of open clinical trials for myeloma patients in Australia. There seem to be at least a couple good options.

You also can find a list of new myeloma drugs that are being researched in clinical trials at the top of the Beacon's news page,

https://myelomabeacon.org/news/

Finally, Australia appears to have a system in place for "compassionate use" access to unapproved drugs. It's called a "Special Access Scheme", and it's something you also may want to consider and start discussing with Wayne's doctor. Here is a link that I found with some information on it:

https://www.tga.gov.au/form/special-access-scheme

I hope this helps a bit. I wish you and Wayne all the best. Please let us know if we can be of more help, and keep us posted on how things are going.

[blair77]

Re: Where to now?

by blair77 on Wed Apr 01, 2015 12:08 am

Has he ever used Revlimid?

[Wayne]

Re: Where to now?

by Wayne on Tue Apr 07, 2015 12:28 am

Thank you both for your replies. Wayne has been in the hospital since I last posted. The tumors in his pancreas have caused kidney and liver problems. Looking at trying Revlimid but have to wait approximately a week to get government approval.

[Wayne]

Re: Where to now?

by Wayne on Sat Apr 18, 2015 9:40 am

Thank you to both of you for taking the time to respond to my post. Unfortunately Myeloma won out and we brought Wayne home to die, he passed away Thursday afternoon surrounded by his loving family. Now at peace no more pain. Gone far to soon. Wishing you all the best on your journey with this unrelenting disease.

[Tracy J]

Re: Where to now?

by Tracy J on Sat Apr 18, 2015 10:34 am

Oh no. I'm so sorry to learn your sad news. My thoughts go to you.

[Cheryl G]

Re: Where to now?

by Cheryl G on Sat Apr 18, 2015 11:06 am

I am so sorry to hear this news. I hope that Wayne did not suffer too much, and that he was able to sense the love and caring that you and others close to him were giving him.

Please accept my sincere condolences and best wishes for you and all those who were close to Wayne.

[Rhonda]

Re: Where to now?

by Rhonda on Sat Apr 18, 2015 3:45 pm

I am so sorry to hear of your loss it is so hard to try to understand how and why. My thoughts and prayers are with you and your family.

[Toni]

Re: Where to now?

by Toni on Sat Apr 18, 2015 4:38 pm

I am so sorry to hear Wayne has passed away. I hope there is comfort for you and your family that he was able to be at home with all of you by his side. My thoughts and prayers go out for you and your family. And thank you for returning and sharing this news, even though I know it must have been very painful to do so....

*hugs*