[GeorgeLJurak]

Re: Newbie - Daughter of Patient

by GeorgeLJurak on Fri Sep 14, 2012 4:04 pm

Yes, I agree. Listen to Mom.

[Crista]

Re: Newbie - Daughter of Patient

by Crista on Mon Sep 24, 2012 11:33 am

Heidi,

I'm currently experiencing a similar situation with my mother. She was diagnosed a little over two years ago. Her first chemo was Revlimid and it got her to partial remission in 6 months. She followed that up with a SCT, and while it lowered her numbers even more she did not hit complete remission. Her myeloma did not progress for six months, but when it did it was very aggressive. She then tried Velcade and failed, her body did not react whatsoever to the drug and then another combination of Revlimid. This worked for one month only and then her body no longer responded. Next week we are starting her on a trial with Carfilzomib. This drug is supposed to be very promising for those who have found no luck with other treatments. And there is word that it works well with newly diagnosed patients as a combination of drugs. I recently stumbled across this information. http://newsblog.mayoclinic.org/2012/06/06/four-drug-mix-treats-multiple-myeloma-with-fewer-side-effects/

I would suggest looking into this if your father has troubles with his next treatment. I'm a little concerned about the side effects for relapsed patients, but I'm hopefully that she will be one of the few not negatively affected by the treatment since she's already become a statistic in every other course of action.

I apologize If I'm not using proper terminology when it comes to remission. Unfortunately, I'm the only one who can go through this process with her and we are clear across the country from one another.

Sorry to hear about your father, hope this next treatment works wonders for him. *Fingers Crossed*

[suzierose]

Re: Newbie - Daughter of Patient

by suzierose on Mon Sep 24, 2012 2:40 pm

The CYCLONE study may have been effective and may have fewer AE's when the parameter for AE's is peripheral neuropathy, as talked about in the video.

However, this combination is not the best therapeutic choice available for newly diagnosed patients in terms of benefits and risks.

The optimum combination for the least side effects and maximum efficacy would be carfilzomib/dex/lenalidomide or carfilzomib/dex/pomalidomide.

Cyclophoshamide has side effects (bladder /hair loss/mouth sores/nausea) that are unneccessary given the other choices available today for myeloma.

Thalidomide, has far greater myelosupression and neuropathy side effects than either lenalidomide or pomalidomide.

If, I had to choose therapy for a loved one, it would exclude using either of these agents as there are far better therapeutic choices that are as if not more effective with far less side effects.

[Eric Hofacket]

Re: Newbie - Daughter of Patient

by Eric Hofacket on Mon Sep 24, 2012 8:38 pm

Last year I was getting Velcade twice weekly. My health care is provider is Kaiser Permanente, a HMO. When I went in the nurses in infusion medicine center at the Kaiser hospital not only administered the Velcade but they also checked my blood pressure, pulse, breathing rate, weight and looked for swelling in my feet. They also examined my general physical appearance and went over a list of questions about my health, how I was sleeping, asking about potential drug side effects etc. I saw latter in my medical record they were tracking all this. If there were any issues or concerns, the Oncology doctors were on the same floor in the adjacent hallway. I do not know if other health care providers or systems that use and independent infusion medicine center examine, track and report back on everything Kaiser did or just administer the Velcade and send you on your way. But if they do, going in for Velcade weekly may be a good thing for your father as he may get great deal more monitoring than taking an oral medicine a home like Revlimid. I felt going in for me was a good thing, I certainly had some issues and had a declining condition at times.
I was not looking forward to all the needle sticking too but the reality of having multiple myeloma is that is hardly the worst thing a multiple myeloma patient will experience and needled sticks are something you will have to get used to Velcade or not. One thing to consider though is you father will be in the infusion medicine for about two hours and with his Asperger's Syndrome and consistent interest as you described he may overwhelm the nurses and other patients, or maybe he might find another patient who likes to talk about his condition as much as he does and this will be an outlet for him.

[Crista]

Re: Newbie - Daughter of Patient

by Crista on Tue Sep 25, 2012 12:32 am

Suzierose,

Thanks for your response. My mom is actually starting the carfilzomib/dex/pomalidomide combination next week and I've been very hesitant in supporting this decision. No because of the combination, but more because of her reaction to current medications and the side effects I've seen mentioned associated with Carfilzomib. It's good to know that someone has heard of the combination she will be put on and believes it may be positive for her recovery (I know you are very active in this community). I suppose my biggest concern is if this combo doesn't work for her, what options are there? I read something saying that 7 drugs have been approved to treat Myeloma, but I'm assuming that is a combination of drugs with either Velcade or Revlimid, not additional things that can be taken on their own.

Thanks.