• Karen4's Avatar

    Karen4 wrote on lovelyafc's wall

    Have they discussed stem cell transplant with you? Clinical trials? I see that you've only had the one chemo - good for you! It took 2 traditional therapies and a clinical trial to get my disease suppressed enough to have the stem cell transplant. However, it was the best chance of a good remission that I had.

    Ask your doctor questions. There are very good clinical trials out there that could probably help you. There a several studies on refractory or recurrening disease. I highly recommend tapping into some resources like Multiple Myeloma Research Foundation, LIVESTRONG, and the Leukemia and Lymphoma Society. They have lists of clinical trials, support information, etc. I also highly recommend finding a support group in your area to talk to other MM survivors. You will probably be the youngest person in the room, but these people have traveled the same road and my have some valuable insight to your situation. Never ever hesitate to ask your doctor questions.

    Take care and keep us posted. I'll be interested to know what their next step with you will be. I worry about recurrence because mine is resistant (refractory, as my doctor calls it). The statistics are usually and average of about 30 months before the disease starts to try to re-emerge. I hope I last that long, but I have a feeling I may be more like you with a recurrence sooner. Right now, I will treasure the partial remission and take my Revlimid faithfully every day (my maintenance therapy). Explore your options and go into your doctor's office prepared with questions about those options.

    Above all, put your warrior armor on each day and fight with the warrior spirit. Outcomes for people like us are improving. Let's be THAT statistic!

    Hang in there,
    Karen

    1 Comment
    • lovelyafc's Avatar
      lovelyafc

      Thanks for the encouragement!
      When I was first diagnosed, I had a consult with the transplant surgeons at Johns Hopkins (JH). My oncologist worked with the surgeon to develop my treatment plan which did not include a stem cell transplant at the time. After eight cycles, I have not received active treatment for 1 year 10 months. I was able to achieve a very good partial response to chemo and the cancer was undetected until January 2012. My last two follow up appointments showed small increases in my M Spike. The issue is when to restart treatment as chemo has side effects, so quality of life must be weighed. My oncologist does not believe the small increases are worth the side effects of chemo. He will consult with JH to see what and when my treatment should start again to include a stem cell transplant.

      I am on MMRF and Leukemia and Lymphoma Society and ACOR list so I receive tons of information on clinical trials, therapies, webinars, support etc. There is a Life with Cancer center near me. The MM group meets once a month. I have attended once about a year ago (meetings are during work hours) and it was very informative. The guest speaker was a Myeloma transplant surgeon from JH and he was surprised that I was not on maintenance. My doctor’s position is to allow the body to recover from all the toxins once you reach remission. He believes that the clinical trials and new treatment options may provide for a better cure, so when a relapse occurs it may be a better treatment option available then before. I tend to agree with him. Although sometime think about whether my lack of maintenance will have a long term impact. Beside the pain from arthritis in my lumbar spine (I believe chemo caused it), the occasional shooting pain from neuropathy, and fatigue, I feel okay. However, it took over 1 year to get to this point. I will see my doctor again this month.

      about 4 years ago
  • Karen4's Avatar

    Karen4 wrote on Rick's wall

    I was diagnosed in July 2010. I had two 'traditional' chemos that failed and a clinical trial that worked so I could undergo stem cell transplantation last summer. I'm in a stable partial remission and oding well. Your wife is young for this disease, at least that's what they kept telling me at the age of 53. I fared well through the chemotherapies. Didn't have radiation or surgery. Since I've had the most common chemos, I'm happy to help answer questions about the experience. I had Velcade/Dexamethasone/Cytoxin first - almost 2 cycles with a good immediate reponse that then plateaued at the start of the 2nd cycle. I then had something called Hyper-CVAD (cytoxin/vencrystine/adriamycin/dexamethasone)-infusion over a 4 day period that was supposed to be intense therapy. This one made me lose my hair for the first time and had minimal effect on the disease. The clinical trial was Revlamid/thalidomide/dexamethosone, and it pushed my 'myeloma' numbers low enough to begin stem cell harvest and ultimately transplantation. The chemo pre-transplant didn't have any real negative side effects for about a week, and even then mine were mild. I was a lucky one.

    The worst part of any of these was the Dexamethasone (which is a steroid) and the loss of my hair-TWICE. The Dexa makes you stupid, but while on it, also makes you feel like Supergirl until the crash and burn of coming off it. You will have to be patient with her because she'll not be able to remember things well. She'll be moody and not quite herself, but it's a necessary part of the treatment which is more important than the side effects.

    Above all, stay positive! There are lots of good therapies out there for myeloma now, even though there isn't a cure yet. Newer therapies are coming out in clinical trials quickly. I encourage you to find a support group in your area. Though my family and friends were 'there for me' and I knew I could depend on them through it all, my best support was talking to other patients in waiting rooms, etc about their experience. I have talked to people who have survived this disease for up to 15 years. I am thankful for those people because they keep me focused on the hope of a longer life expectancy with the disease.

    You will both be in my prayers. Please keep us posted on what's going on with her and ask questions. That's what this site is about!

    Karen

  • Karen4's Avatar

    Karen4 started following

    User: dawgfather62

  • Karen4's Avatar

    Karen4 started following

    User: KXW

  • Karen4's Avatar

    Karen4 started following

    User: Charlieb

  • Karen4's Avatar

    Karen4 started following

    User: frantic2008