Hello. My name is Sam. I was diagnosed about 18 months ago after having severe back pain. I am 70 years old. I was started on Zometa, then Revlimid. I had an allergic reaction to the Rev, so I was switched to Bortezomib and Dexamethosone, which is working nicely. I am on cycle 16 and my numbers are stable. I am treated by the local VA. I am now undergoing evaluation for an Autologus transplant, and I believe it will be approved. I have some questions, which I will post in other sections. Thanks to all of you for being here!
Sam
Forums
7 posts
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sams - Name: Sam Sharp
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 68
Re: multiple myeloma Patient
Hi Sam,
I don't have multiple myeloma, nor am I a veteran, but I noticed no one had responded to either of your posts yet, so I wanted to introduce myself. I am Kristina, I am 38 and I was diagnosed with MGUS the end of April. I'm sorry I can't help anymore with your questions. Sometimes it takes awhile for people to respond that can relate to your post or questions, but I'm sure eventually someone will come along. Surely there are other Vetrans out there coping with this that can offer suggestions to some of your questions. Best wishes to you!
I don't have multiple myeloma, nor am I a veteran, but I noticed no one had responded to either of your posts yet, so I wanted to introduce myself. I am Kristina, I am 38 and I was diagnosed with MGUS the end of April. I'm sorry I can't help anymore with your questions. Sometimes it takes awhile for people to respond that can relate to your post or questions, but I'm sure eventually someone will come along. Surely there are other Vetrans out there coping with this that can offer suggestions to some of your questions. Best wishes to you!
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kristina - Name: Kristina
- Who do you know with myeloma?: MGUS
- When were you/they diagnosed?: April 25th 2013 KU Oncology Center
- Age at diagnosis: 38
Re: multiple myeloma Patient
Thanks for the welcome, Kristina!
Just keep an eye on that MGUS. I'm pretty sure I was at that stage for several years. If it progresses there will be several good treatment options available to you.
This whole thing is easier to deal with when you've had a long time to think about it and get used to the idea. My sister was blindsided with a different type of cancer, and the sudden diagnosis was much harder on her emotionally than it was for me. I am at peace with it and more than ready for the next step, stem cell transplant. Fortunately hers was taken care of and she is cancer free.
Sam
Just keep an eye on that MGUS. I'm pretty sure I was at that stage for several years. If it progresses there will be several good treatment options available to you.
This whole thing is easier to deal with when you've had a long time to think about it and get used to the idea. My sister was blindsided with a different type of cancer, and the sudden diagnosis was much harder on her emotionally than it was for me. I am at peace with it and more than ready for the next step, stem cell transplant. Fortunately hers was taken care of and she is cancer free.
Sam
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Anonymous
Re: multiple myeloma Patient
Hi Sam
Welcome!
Hope you are feeling OK.
I too have back issues and also broke my hip without falling. This was not diagnosed for four months and I was treated by the doctors like some crazy lady with backache. Actually, this time last year, I was a virtual prisoner in the basement for a month as I couldn't climb the eleven stairs to get out. When my hip was finally replaced, they discovered tumors and I was then diagnosed with multiple myeloma. I started on Velcade & Dex (that I call my crazy pills!) and then in December went through the stem cell collection process. After that a Hickman line was inserted and then I waited for the call for the autologous sct that happened in mid-February. This week I have been told that I'm in complete remission, so that's great news since I have just become a grandmother for the first time (albeit a Skype one) and I want to be around to see my granddaughter grow and flourish.
This disease is full of ups and downs, both physically and mentally. I hope you have someone to help you through this all. There is light at the end of the tunnel, so don't give up and stay positive - it appears to help...
Take care
Krysia
Welcome!
Hope you are feeling OK.
I too have back issues and also broke my hip without falling. This was not diagnosed for four months and I was treated by the doctors like some crazy lady with backache. Actually, this time last year, I was a virtual prisoner in the basement for a month as I couldn't climb the eleven stairs to get out. When my hip was finally replaced, they discovered tumors and I was then diagnosed with multiple myeloma. I started on Velcade & Dex (that I call my crazy pills!) and then in December went through the stem cell collection process. After that a Hickman line was inserted and then I waited for the call for the autologous sct that happened in mid-February. This week I have been told that I'm in complete remission, so that's great news since I have just become a grandmother for the first time (albeit a Skype one) and I want to be around to see my granddaughter grow and flourish.
This disease is full of ups and downs, both physically and mentally. I hope you have someone to help you through this all. There is light at the end of the tunnel, so don't give up and stay positive - it appears to help...
Take care
Krysia
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
Re: multiple myeloma Patient
Hi, Krysia!
Thank you for the nice reply. Congratulations on your fantastic progress! Our situations are pretty much parallel. Once diagnosed the Velcade/Dex and Zometa improved me greatly. I am now able to do most things. Very different from the beginning when I slept in my recliner for two months because I wasn't able to get out of bed. The multiple myeloma is stable for now, but I worry about it getting worse, so I plan to take advantage of the transplant. Hopefully it will be in July. YOUR results are encouraging!
I have great support and a positive attitude. It could be so much worse! I am ready to accept the unpleasantness of the transplant procedure in exchange for the long term results. Our grandkids are 12, 8, and 3, and I plan to be there for all of their weddings!
Sam
Thank you for the nice reply. Congratulations on your fantastic progress! Our situations are pretty much parallel. Once diagnosed the Velcade/Dex and Zometa improved me greatly. I am now able to do most things. Very different from the beginning when I slept in my recliner for two months because I wasn't able to get out of bed. The multiple myeloma is stable for now, but I worry about it getting worse, so I plan to take advantage of the transplant. Hopefully it will be in July. YOUR results are encouraging!
I have great support and a positive attitude. It could be so much worse! I am ready to accept the unpleasantness of the transplant procedure in exchange for the long term results. Our grandkids are 12, 8, and 3, and I plan to be there for all of their weddings!
Sam
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sams - Name: Sam Sharp
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 68
Re: multiple myeloma Patient
I've been a hairdresser for 32 years and dealt with a sore back and neck for years. I thought it just came with the territory. So in April of 2012 , I started going to a chiropractor. After going for 2 months and not getting any better, actually getting worse, I left work in a lot off pain. I went straight to urgent care. He did x-rays and sent me home with muscle relaxers, Vicodin and steroids . After 2 days and no relief , I called back and he sent me in for an MRI. He called me in the next day and told me I had Multiple Myeloma.
I had never heard of this kind of cancer before, and I was devastated . He wanted me to have a CT scan also, so my husband took me in that same day. The doctor called us that evening with the news that I also had kidney cancer.
I'm 51 years old with 3 children, all grown and 1 grandchild whom I watched on my day off of work. I had a compression fracture in my back due to my many lesions in my spine. Tests showed more lesions in my upper arms, pelvis and hips.
I took a leave of absence from work and started on Revlimid and dexamethasone for 2 months, along with zometa once a month. They added Velcade to that which gave me neuropathy. They had to take me off for a month before my surgery for the kidney cancer. Surgery was Oct. 29 and was a success with only having to take one third of my left kidney.
After a month, I was back on the meds to get my numbers down for the stem cell transplant. The end of Feb. 2013 I had my central line put in and put in the hospital for the chemo treatment. I was told to suck on ice a half hour before chemo and 2 hours after to prevent mouth sores and it worked.
When I got out of the hospital, I went to stay at Hope Lodge along with my care giver, which was free to stay, thank God for donations, this place was the best. I went to the BMT clinic every day to check my counts. After a week I was ready for collection which I was able to get enough stem cells in 2 days. I was able to go home until a hospital room was ready for me and the transplant.
While I was home , I slipped down my stairs and caught my arm through the railing and got very bruised and sore. With my counts being so low, they were worried of blood clots. But I did fine, my husband was very worried. My stem cell transplant was Mar. 6 2013 and with a couple bouts back in the hospital with influenza B and 5 days of not being able to keep anything down and diahrea, I have been doing well.
Yesterday I had my fifth bone marrow biopsy, bone scan and more blood work for my 100 days after transplant. I will get the results next week. My hair is starting to come back and I am planning to go back to work part time in 2 weeks. Looking forward to getting back to a routine and hopefully getting some of this weight off that has accumulated . The doctors have said how well I have been doing, just hoping it stays in remission forever.
I had never heard of this kind of cancer before, and I was devastated . He wanted me to have a CT scan also, so my husband took me in that same day. The doctor called us that evening with the news that I also had kidney cancer.
I'm 51 years old with 3 children, all grown and 1 grandchild whom I watched on my day off of work. I had a compression fracture in my back due to my many lesions in my spine. Tests showed more lesions in my upper arms, pelvis and hips.
I took a leave of absence from work and started on Revlimid and dexamethasone for 2 months, along with zometa once a month. They added Velcade to that which gave me neuropathy. They had to take me off for a month before my surgery for the kidney cancer. Surgery was Oct. 29 and was a success with only having to take one third of my left kidney.
After a month, I was back on the meds to get my numbers down for the stem cell transplant. The end of Feb. 2013 I had my central line put in and put in the hospital for the chemo treatment. I was told to suck on ice a half hour before chemo and 2 hours after to prevent mouth sores and it worked.
When I got out of the hospital, I went to stay at Hope Lodge along with my care giver, which was free to stay, thank God for donations, this place was the best. I went to the BMT clinic every day to check my counts. After a week I was ready for collection which I was able to get enough stem cells in 2 days. I was able to go home until a hospital room was ready for me and the transplant.
While I was home , I slipped down my stairs and caught my arm through the railing and got very bruised and sore. With my counts being so low, they were worried of blood clots. But I did fine, my husband was very worried. My stem cell transplant was Mar. 6 2013 and with a couple bouts back in the hospital with influenza B and 5 days of not being able to keep anything down and diahrea, I have been doing well.
Yesterday I had my fifth bone marrow biopsy, bone scan and more blood work for my 100 days after transplant. I will get the results next week. My hair is starting to come back and I am planning to go back to work part time in 2 weeks. Looking forward to getting back to a routine and hopefully getting some of this weight off that has accumulated . The doctors have said how well I have been doing, just hoping it stays in remission forever.
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Tammy Sharp Wilson
Re: multiple myeloma Patient
Thanks for the success story, Tammy! I'm sorry you had to go through so much to get there.
I wonder if we are related somewhere down the line? Our Sharps come from Louisiana.
I, too, had comprression fractures, and I am 1 1/2" shorter than I used to be.
My transplant was approved yesterday, so I hope to start the process in about a month.
Sam
I wonder if we are related somewhere down the line? Our Sharps come from Louisiana.
I, too, had comprression fractures, and I am 1 1/2" shorter than I used to be.
My transplant was approved yesterday, so I hope to start the process in about a month.
Sam
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sams - Name: Sam Sharp
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 68
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