How do you all know so much about your disease? Momma was diagnosed Easter 2011 and the past five months has been a whirlwind. I feel as if I am intruding and bothering the doctor's and nurses when I call for a clearer understanding. Answers are always vague and unclear. Initial oncologist said they don't do staging? He sent her to a different doctor two weeks ago who said she was advanced stage III? She has not stood or even sat up since June. Her blood pressure plummets to 65-70 over 30-35 when she tries to stand and she passes out or vomits. Her platelets stay at 20, hemo is 8 and I don't really know what else to ask for. They offer nothing....
In April she was placed in ICU when she suddenly had spiked fevers and her kidneys shut down. Plasma infusion and a four day treatment with melphalan/prednisone saved her life. She was sent to a skilled nursing facility to build up her strength and she has remained here ever since. After four cycles of treatment with melphalan/prednisone (four days every six weeks) oncologist finally told us her IgA was 2940 and chemo wasn't working. She has lost 60+lbs has no interest in eating, picked up Cdif and severe UTI...but never gives up the hope she can beat this disease. I try to remain hopeful. Her bone scan shows no signsof lesions at this point but she has experienced chronic back pain for the past several years.
No one really helps prepare us or gives up options. We follow momma's lead...if she wants to do what they recommend ... we support her. Today she started her first dose of Velcade and seems to have weathered it well. She was given platelest before the treatment. Oncologist says she will have to have one day a week Velcade due to three days on dialysis. No speculation for how long...will monitor for two months to see if it is effective.
Can anyone shed some light and help me to deal with this realistically? After nearly six months I am assuming she has not been in remission. All suggestions and comments are most welcome.
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ladyleese - Name: Lisa
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 79
Re: Please help me understand...
Hi Ladyleese,
I'm sorry to hear about your mom's condition. If you read up on the articles and forums on this site. There is hope.. Have you sought for a second opinion? Are you seeing an multiple myeloma specialist?
It's not quite clear from your post if you are but if you are not.. you might want to consider looking for one close to your area.
Best of luck... we will continue to hope and pray for the best outcome for our family and friends who have multiple myeloma.
I'm sorry to hear about your mom's condition. If you read up on the articles and forums on this site. There is hope.. Have you sought for a second opinion? Are you seeing an multiple myeloma specialist?
It's not quite clear from your post if you are but if you are not.. you might want to consider looking for one close to your area.
Best of luck... we will continue to hope and pray for the best outcome for our family and friends who have multiple myeloma.
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healingoptimist
Re: Please help me understand...
I'm so sorry to hear about your mom - I can only imagine how frightening this is for you.
A few thoughts about some things that might help. First, find out your Mom's M-spike level, and the percent plasma cells in her bone marrow. You should be able to get these numbers from when she was diagnosed, and from the tests they did when they told you the treatment wasn't working. Depending on how long it was between the end of the melphalan/prednisone and the start of the Velcade, they may have done another set of tests to see where she was. In very general terms knowing these numbers can help you track your mom's disease - you would like to see these numbers going down with treatment.
Melphalan can do funny things to your taste buds. When EJ had his SCT (which is high dose melphalan) the skin on the roof of his mouth shed, and his entire digestive system was really out of wack! He didn't like the taste of sweets, and he couldn't taste salt. The only things he really seemed to like were cheerios, popsicles, beef, and smoothies. See if you can figure out what your mom likes, and just have it around so she can snack as she feels up to it. I've been told that the chocolate Ensure over ice isn't that bad.
Velcade can cause shingles! EJ and I found this out the hard way. If she has not had shingles yet, talk to the doctor about it. It can also cause pain/tingling in the hands and feet. Check in with your mom every once and a while about this. If her hands and feet do start to bother her, they can give her something for the pain.
My mother is 81 and recently started having severe back pain. It turned out to be a stenosis -- a narrowing of the spinal cord. Since your mom doesn't have lesions, you may ask the doc about this.
Good luck to you and your Mom. -- Lyn
A few thoughts about some things that might help. First, find out your Mom's M-spike level, and the percent plasma cells in her bone marrow. You should be able to get these numbers from when she was diagnosed, and from the tests they did when they told you the treatment wasn't working. Depending on how long it was between the end of the melphalan/prednisone and the start of the Velcade, they may have done another set of tests to see where she was. In very general terms knowing these numbers can help you track your mom's disease - you would like to see these numbers going down with treatment.
Melphalan can do funny things to your taste buds. When EJ had his SCT (which is high dose melphalan) the skin on the roof of his mouth shed, and his entire digestive system was really out of wack! He didn't like the taste of sweets, and he couldn't taste salt. The only things he really seemed to like were cheerios, popsicles, beef, and smoothies. See if you can figure out what your mom likes, and just have it around so she can snack as she feels up to it. I've been told that the chocolate Ensure over ice isn't that bad.
Velcade can cause shingles! EJ and I found this out the hard way. If she has not had shingles yet, talk to the doctor about it. It can also cause pain/tingling in the hands and feet. Check in with your mom every once and a while about this. If her hands and feet do start to bother her, they can give her something for the pain.
My mother is 81 and recently started having severe back pain. It turned out to be a stenosis -- a narrowing of the spinal cord. Since your mom doesn't have lesions, you may ask the doc about this.
Good luck to you and your Mom. -- Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Please help me understand...
Thank you for responding so quickly. The new oncologist did CBC and kidney work on 9/6 right before planning her treatment. As for a multiple myeloma specialist I know the first oncologist was but she lives in such a rural area she has to be transported an hour away to just receive her chemo. The first doctor was two hours away and it was too much on her poor body to make that trip every week for chemo. I learned today she has to have 40 weeks of Velcade. Does that sound high to you?
Mom's M Spike level is 2.0 but I have no idea what that means? We don't have the % of plasma cells in her bone marrow. A bone marrow test was never done. As for the shingles they are giving her injections after dialysis since her system cannot flush out any medications given unless through dialysis.
I really do appreciate your assistance and guidance.
Lisa
Mom's M Spike level is 2.0 but I have no idea what that means? We don't have the % of plasma cells in her bone marrow. A bone marrow test was never done. As for the shingles they are giving her injections after dialysis since her system cannot flush out any medications given unless through dialysis.
I really do appreciate your assistance and guidance.
Lisa
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ladyleese - Name: Lisa
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 79
Re: Please help me understand...
You may want to check out The International Multipe Myeloma website -- http://www.myeloma.org. They have a number of publications that you can download that explain what multiple myeloma is, what all the tests mean, and what some of the current treatment options are. I find them to be an excellent resource. They also have a hot line you can call with questions, and they may be able to steer you to resources in your area that you are unaware of.
Good luck! -- Lyn
Good luck! -- Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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