Just starting....

Frosted
Frosted Member Posts: 3
in Multiple Myeloma #1

Hi All,  My husband was recently diagnosed with high risk MM. Started Dex and Rev today. Velcade next week, twice a week. We applied for financial help through HealthWell which paid for the Rev. That stuff would have cost us $2k per month even with our insurance. Im going to be the caregiver, I have no idea what to expect.  I’m worrying about everything from my husbands response to the meds to the possible stem cell transplant to how much of this we can afford. I don’t want my husband to worry about anything but his getting better. Is there anyone who was diagnosed as high risk able to tell me what to expect?  I really need to know if my husband will get better even though I know there is no cure. I guess everyone would like to know that....

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  • Frosted
    Frosted Member Posts: 3
    edited August 2019 #2
    Also

    The transplant is supposed to involve 3 weeks in isolation, in a negative pressure room. I was told I can’t be there. i need to communicate with my husband, can he take his cell phone?  It’s not sterile, I don’t know if it can be made sterile. What happens to him during that 3 weeks?

  • XYMXYZPTLK2020
    XYMXYZPTLK2020 Member Posts: 2 Member
    edited September 2019 #3

    I was diagnosed "High Risk" in 2014. Though each Multiple Myeloma (MM) patient is different in terms of the expression of the cancer and response to treatment, the following is generally true. Treatments will work for a time and then stop working due to mutations that occur over time. The cancer finds a way to defeat the treatments. I was on 2 treatments in 2014 and 2015 and then had a stem cell transplant (SCT). My remission lasted about 2.5 years and then I had another 2 treatments which eventually failed. I'm currently on one of the newer treatments, Dazarlex, and responding well for the past 6 months. A lot of progress has been made in the past five years which is why I'm still around. The next level of treatment CAR-T cell, is being developed and tested in clinical trials. My SCT in 2015 was done as an outpatient. I had to check in each day of the process and I would have been hospitalized if I showed any signs of sickness, but I made it thru okay. I'm unsure where you are getting the idea of 3 weeks in isolation. I don't know your circumstances or if you reside in the US, but I was old enough for Medicare and a Medicare supplement when diagnosed. The only out of pocket I incurred was travel & lodging expenses due to travel to and from the cancer center. The oral cancer meds are expensive as you know, but several resources exist to offset that cost. Start with your oncologist. He may be able to point you in the right direction for financial concerns. All the best.

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