I was diagnosed with multiple myeloma in October of 2016. I had just retired in June. A month after retiring I was suddenly dealing with severe back pain. I experienced a painful fracture. My doctor sent me for an MRI, which revealed the fracture and other vertebral lesions.
Thus began this myeloma journey when I was supposed to be traveling with my husband and enjoying our retirement. It changed everything. My husband decided to continue working while I went into treatment.
My M-spike was 2.3 g/dL (23 g/l) and I had 20 percent bone marrow involvement. I was anemic and skeletal surveys revealed lesions all over my frame too numerous to count. What a shock! I was so healthy and fit otherwise at age 61, I could barely believe this was happening to me. Aside from the back pain, which resolved itself, I felt great.
I started on Velcade, Revlimid, and dex. After 6 months, my M-spike went from 2.3 to 1.4 g/dL. Then it got stuck there for a few cycles. After a change of regimen to Kyprolis, Revlimid, and dex, I am down to an M-spike of 0.4 g/dL.
I have received my schedule for an autologous stem cell transplant from Stanford. I start the process on September 19, 2017. I plan to try and document this process as best I can, while perhaps learning from others along the way.
Forums
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twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
Re: Judie's stem cell transplant
Hi Judie.
Your story sounds familiar. Multiple myeloma has a way of showing up at the worst time (although , there is never an ideal time for a diagnosis). Same here, completely healthy, good weight, not taking any medications.
Sorry multiple myeloma will interrupt your plans in retirement. Interruption! You will get back to your plans as you wrestle multiple myeloma to the ground.
I am in Day +5 of my autologous transplant. Not too uncomfortable, but no vacation either. Blessing for a complete remission.
I am jotting my story here too. The members at the Beacon are informed and supportive. Prayers for you and your family.
I will follow your journey. Put your gloves on.
Your story sounds familiar. Multiple myeloma has a way of showing up at the worst time (although , there is never an ideal time for a diagnosis). Same here, completely healthy, good weight, not taking any medications.
Sorry multiple myeloma will interrupt your plans in retirement. Interruption! You will get back to your plans as you wrestle multiple myeloma to the ground.
I am in Day +5 of my autologous transplant. Not too uncomfortable, but no vacation either. Blessing for a complete remission.
I am jotting my story here too. The members at the Beacon are informed and supportive. Prayers for you and your family.
I will follow your journey. Put your gloves on.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Judie's stem cell transplant
Hi Judie
I too had my stem cell transplant at Stanford in August 2015. My transplant was outpatient. I was switched to Kyprolis, Revlimid, and dexamethasone (KRD) after cyclophosphamide, Velcade, and dexamethasone (CyBorD) only stabilized my numbers. I am currently on KRD maintenance.
I know the shock of a diagnosis for multiple myeloma is like getting hit by a freight train. It took me 2 years to come to grips with it, and now I wish I wouldn't have wasted so much time worrying and feeling sorry for myself.
I retired in July 2016 after the transplant and was so glad I did. I was able to spend so much more time on building my strength up with daily walks. I have recently joined a gym and do yoga as I often as I can. My husband and I have taken numerous vacations since the transplant and hope to go to Costa Rica in December. As hard as the diagnosis is, try to stay positive and know there are a lot of good drug choices out there, we just need to stay healthy so we don't allow the drugs we have to take rule our lives.
I wish you the very best and will look forward to reading your posts.
Rhonda
I too had my stem cell transplant at Stanford in August 2015. My transplant was outpatient. I was switched to Kyprolis, Revlimid, and dexamethasone (KRD) after cyclophosphamide, Velcade, and dexamethasone (CyBorD) only stabilized my numbers. I am currently on KRD maintenance.
I know the shock of a diagnosis for multiple myeloma is like getting hit by a freight train. It took me 2 years to come to grips with it, and now I wish I wouldn't have wasted so much time worrying and feeling sorry for myself.
I retired in July 2016 after the transplant and was so glad I did. I was able to spend so much more time on building my strength up with daily walks. I have recently joined a gym and do yoga as I often as I can. My husband and I have taken numerous vacations since the transplant and hope to go to Costa Rica in December. As hard as the diagnosis is, try to stay positive and know there are a lot of good drug choices out there, we just need to stay healthy so we don't allow the drugs we have to take rule our lives.
I wish you the very best and will look forward to reading your posts.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Judie's stem cell transplant
Hi Hopeful1,
I am so interested in your story. You are ahead of me by a month or two, so I am very interested to see how you are handling each process and all that comes with it. Thanks for the reply.
I wish you the very best and I will follow along with you as you go through this process!
I am so interested in your story. You are ahead of me by a month or two, so I am very interested to see how you are handling each process and all that comes with it. Thanks for the reply.
I wish you the very best and I will follow along with you as you go through this process!
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twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
Re: Judie's stem cell transplant
Hi Rhonda,
Thanks for the reply.
I am very glad you are doing well and finding time to travel. That is wonderful to hear.
If you can think of any tips related to the transplant experience at Stanford, they would be welcome.
Thanks for the reply.
I am very glad you are doing well and finding time to travel. That is wonderful to hear.
If you can think of any tips related to the transplant experience at Stanford, they would be welcome.
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twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
Re: Judie's stem cell transplant
In an effort to restage me in preparation for the transplant, my transplant center has requested a number of tests.
This week we have attempted to cram as many tests into a two-day period as possible. On Monday I had an echocardiogram, EKG, chest x-ray, skeletal survey. Tuesday was a pulmonary function test, a slew of blood work, finished off with a lovely bone marrow biopsy! Just when I thought they had done it all, they gave me a large orange container for my urine for the next 24 hours. I think that might be it. I am sure they will let me know if there is any other bodily fluid they would like to have a look at!
This was my second bone marrow biopsy and aspiration and I have to say it is literally nowhere near as bad as I have read they can be. The nurse practitioner in my local oncologist's office performs them and she is extremely generous with the lidocaine.
Well, off to the ladies room!
This week we have attempted to cram as many tests into a two-day period as possible. On Monday I had an echocardiogram, EKG, chest x-ray, skeletal survey. Tuesday was a pulmonary function test, a slew of blood work, finished off with a lovely bone marrow biopsy! Just when I thought they had done it all, they gave me a large orange container for my urine for the next 24 hours. I think that might be it. I am sure they will let me know if there is any other bodily fluid they would like to have a look at!
This was my second bone marrow biopsy and aspiration and I have to say it is literally nowhere near as bad as I have read they can be. The nurse practitioner in my local oncologist's office performs them and she is extremely generous with the lidocaine.
Well, off to the ladies room!
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twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
Re: Judie's stem cell transplant
I have just completed mobilization week at my transplant center. I am reminded a bit of a convention that you sign up for and there are events taking place each day. "Today's events include a meeting in the morning, a teaching session in the afternoon followed by lunch in our delightful cafeteria!"
All kidding aside, the level of organazation and care are truly off the charts. The medical staff have prepared and arranged everything.
Day one was a chance to meet others with multiple myeloma while we sat as a group to go over consents and possible clinical trials. Our stories are so similar, but I am a bit saddened by the ages of some of the participants. While I am in my sixties, some of the others can't possibly be more than 40.
Next we attend a transplant teaching session. We cover what will happen these next days, how our caregivers can care for us as well as tips for the caregivers themselves. It is in depth and describes many of the things we can expect over the next several days.
Now we split off a bit, some folks have their catheters placed the second day. I attend my lab sessions. They draw blood, collect urine, and perform a chest x-ray. I next visit with my transplant doctor. My labs look great and I have gone from 20 % marrow involvement to less than 1%!
Our little myeloma group see each other in the halls and at the cafeteria. I feel like I have new friends as we chat about what each of us is up to that day.
My third day starts bright and early. I need to be in the ambulatory surgery center at 6:30 am to say good bye to my power port that I have become fond of and have only had for about 5 months. I will be saying hello to a double lumen Hickman catheter in its place. The procedure goes well, but I was a bit surprised how sore the area was where the power port was removed. The good news is that lasted only a day or so.
Now that my catheter is in place, it is a good time to have to hook up to my portable suitcase full of fluids in prep for tomorrow's Cytoxan (cyclophosphamide). I will carry this around with me for two days and two nights. I guess I should name it Rover or something.
Day 4 - Cytoxan. I arrive at 8 a.m. I am given more fluids, dexamethasone, Zofran (ondansetron), and then the Cytoxan. It arrives via my nurse now draped in protective gear and marked with red identifying caution tape, wrapped in double bagging with warning labels. There might be a skull and crossbones! Now I am questioning my decision. Surprisingly it goes without a hitch. I spend the day here, I am provided breakfast and lunch. By lunch I feel a little queasy. Hubby is welcome to my chicken. By the time we have had more fluids and I am getting ready to go, I feel pretty good.
I leave with Rover, my rolling bag of attached fluids, who will live with me for another night.
Day 5 - Ready to go. I have the morning to have coffee and breakfast along with a breakfast of anti-nausea meds, and antibiotics. We arrive at the Infusion Treatment Area (ITA) at 1:00 pm. "Bring along two Neupogen syringes to self-inject with the nurse." WHAT? I have to give myself shots? That's not gonna fly! The nurse wonders if my husband can do it. My husband? The biggest shot chicken s*** l have ever known
Guess what? He learns to do it and painlessly. He is suddenly a pro. Who woulda thunk? We are now home preparing for apheresis, taking pills, taking shots, flushing lines. Its a clinic over here!
All kidding aside, the level of organazation and care are truly off the charts. The medical staff have prepared and arranged everything.
Day one was a chance to meet others with multiple myeloma while we sat as a group to go over consents and possible clinical trials. Our stories are so similar, but I am a bit saddened by the ages of some of the participants. While I am in my sixties, some of the others can't possibly be more than 40.
Next we attend a transplant teaching session. We cover what will happen these next days, how our caregivers can care for us as well as tips for the caregivers themselves. It is in depth and describes many of the things we can expect over the next several days.
Now we split off a bit, some folks have their catheters placed the second day. I attend my lab sessions. They draw blood, collect urine, and perform a chest x-ray. I next visit with my transplant doctor. My labs look great and I have gone from 20 % marrow involvement to less than 1%!
Our little myeloma group see each other in the halls and at the cafeteria. I feel like I have new friends as we chat about what each of us is up to that day.
My third day starts bright and early. I need to be in the ambulatory surgery center at 6:30 am to say good bye to my power port that I have become fond of and have only had for about 5 months. I will be saying hello to a double lumen Hickman catheter in its place. The procedure goes well, but I was a bit surprised how sore the area was where the power port was removed. The good news is that lasted only a day or so.
Now that my catheter is in place, it is a good time to have to hook up to my portable suitcase full of fluids in prep for tomorrow's Cytoxan (cyclophosphamide). I will carry this around with me for two days and two nights. I guess I should name it Rover or something.
Day 4 - Cytoxan. I arrive at 8 a.m. I am given more fluids, dexamethasone, Zofran (ondansetron), and then the Cytoxan. It arrives via my nurse now draped in protective gear and marked with red identifying caution tape, wrapped in double bagging with warning labels. There might be a skull and crossbones! Now I am questioning my decision. Surprisingly it goes without a hitch. I spend the day here, I am provided breakfast and lunch. By lunch I feel a little queasy. Hubby is welcome to my chicken. By the time we have had more fluids and I am getting ready to go, I feel pretty good.
I leave with Rover, my rolling bag of attached fluids, who will live with me for another night.
Day 5 - Ready to go. I have the morning to have coffee and breakfast along with a breakfast of anti-nausea meds, and antibiotics. We arrive at the Infusion Treatment Area (ITA) at 1:00 pm. "Bring along two Neupogen syringes to self-inject with the nurse." WHAT? I have to give myself shots? That's not gonna fly! The nurse wonders if my husband can do it. My husband? The biggest shot chicken s*** l have ever known
Guess what? He learns to do it and painlessly. He is suddenly a pro. Who woulda thunk? We are now home preparing for apheresis, taking pills, taking shots, flushing lines. Its a clinic over here!
-
twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
Re: Judie's stem cell transplant
The two weeks at home between mobilization and apherisis have gone fairly smoothly. I have had no nausea or vomiting as a side effect of the Cytoxan (cyclophosphamide). I did have to purchase some Depends because of another unpleasant side effect, but that didn't last too long.
I must visit my local oncologist daily for blood draws so that my CBC results can be faxed to my transplant center daily. The local hospital does it on the weekend. My husband is giving me the daily Neupogen shot with no problem. Wearing the HEPA filter mask everywhere is the worst part. With a white blood cell count of 0.1, it is a true necessity. Every one stares every where I go, so I spend most of my time at home.
One day my platelet count was very low and it was decided I would need a transfusion. My local hospital couldn't get the correct blood product until the next day. I knew as soon as they told me that, that I would probably not need it. Sure enough, the platelet count had recovered by the following day.
All in all, it was not as bad as I was expecting, though it certainly wasn't a barrel of monkeys! Fingers crossed for the rounds of chemo to come!
I must visit my local oncologist daily for blood draws so that my CBC results can be faxed to my transplant center daily. The local hospital does it on the weekend. My husband is giving me the daily Neupogen shot with no problem. Wearing the HEPA filter mask everywhere is the worst part. With a white blood cell count of 0.1, it is a true necessity. Every one stares every where I go, so I spend most of my time at home.
One day my platelet count was very low and it was decided I would need a transfusion. My local hospital couldn't get the correct blood product until the next day. I knew as soon as they told me that, that I would probably not need it. Sure enough, the platelet count had recovered by the following day.
All in all, it was not as bad as I was expecting, though it certainly wasn't a barrel of monkeys! Fingers crossed for the rounds of chemo to come!
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twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
Re: Judie's stem cell transplant
Good luck, Judie. We're the same age and I'm headed to my stem cell transplant in late October / early November. Mine will be inpatient. I've had a good response to Revlimid, Velcade, and dexamethasone (RVD) induction, and at this point, I just want to get the transplant over with and get to recovery.
Hope things go well for you and looking forward to your posts. Best wishes for a successful procedure and speedy recovery.
Hope things go well for you and looking forward to your posts. Best wishes for a successful procedure and speedy recovery.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Judie's stem cell transplant
Hi GoDucks,
Sounds like we are on a similar time frame. I go back to my transplant center on October 25th and the transplant will take place October 30th. I really am on the same page with you about wanting to just be done with it and get on with life. Lets keep in touch as we go through this together! Best wishes to you!
Sounds like we are on a similar time frame. I go back to my transplant center on October 25th and the transplant will take place October 30th. I really am on the same page with you about wanting to just be done with it and get on with life. Lets keep in touch as we go through this together! Best wishes to you!
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twoswyfts - Name: Judie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 4, 2016
- Age at diagnosis: 61
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