Hello everyone,
It's taken a little while to reach this point to post on here although my wife and I have been reading about others' journeys since my diagnosis in January. At diagnosis my kappa light chains were over 20,000. I had anaemia and creatinine levels of 3.29 mg/dl. I am on cycle 5 of cyclophosphamide, Velcade, and dex (CyBorD).
We are currently living in the US being treated at Maryland Oncology, by a really great specialist in myeloma. In 2 weeks time we have to relocate back to the UK (I am British) as my company will no longer pay for my treatment. My light chains were down to 56 at the last blood test. I think the plan will be a stem cell transplant in the coming months. I will be seeing a consultant in York, who I believe will then refer me to Leeds for the transplant. I have been in contact with Prof Cook in Leeds who is a specialist in myeloma.
I guess I am just reaching out to find out what to expect in the coming months and if there is anyone out there with a similar case to me. Multiple myeloma seems to be so different in everyone, it is difficult to find out information.
My US oncologist highly recommends me to have maintenance after the transplant. However, I don't think it is done as commonly over there as it is here in the US. My FISH results were intermediate with t(4:14) and del(p13).
I am currently getting my head around this 'new normal' with the fatigue, nausea, sleepless nights and restless legs (wonderful dex!).
Thank you for taking the time to read this.
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4 posts
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John N - Name: John N
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2016
- Age at diagnosis: 53
Re: New member, my kappa light chain story
Hi John,
My kappa light chains were 12,000 at diagnosis, my creatinine was almost 1.7. This was in April, 2014.
Sounds as though you are having a wonderful response to treatment! I hope it continues.
I had a stem cell transplant in October, 2014. To be honest, it took me about 6 months to recover. Everyone is different on that account, however. There are people on the forum who are doing Zumba after 30 days or so. I really didn't have any serious problems after the transplant, just weakness and nausea. I was 59 at the time, and did not have any other chronic conditions. I was out of the hospital in 17 days.
I was in complete response (CR) going into transplant. That improved to an sCR (stringent complete response) after transplant. I take a Velcade injection and 12 mg of dex twice per month to hopefully prolong the response.
Good luck and let us know how you do.
Ellen
My kappa light chains were 12,000 at diagnosis, my creatinine was almost 1.7. This was in April, 2014.
Sounds as though you are having a wonderful response to treatment! I hope it continues.
I had a stem cell transplant in October, 2014. To be honest, it took me about 6 months to recover. Everyone is different on that account, however. There are people on the forum who are doing Zumba after 30 days or so. I really didn't have any serious problems after the transplant, just weakness and nausea. I was 59 at the time, and did not have any other chronic conditions. I was out of the hospital in 17 days.
I was in complete response (CR) going into transplant. That improved to an sCR (stringent complete response) after transplant. I take a Velcade injection and 12 mg of dex twice per month to hopefully prolong the response.
Good luck and let us know how you do.
Ellen
Re: New member, my kappa light chain story
John,
So sorry for your diagnosis. My husband was diagnosed at age 58 this last December. He has been on CyBorD as well. He finished 4 months of induction treatments the last of April and really the only side effects he had from it was to feel much better.
His creatinine at the time of diagnosis was 5.0 and had to be admitted to the hospital for renal failure at the beginning of diagnosis. They started him on dex and flushed hard with fluids to jump start the kidney function. He had lesions on ribs and lower back with pain from both and anemia. He also received 2 units of blood at the time.
Now he is in remission with no detectable myeloma in the bone marrow (70% plasma cells at time of diagnosis) and feels good. He has started his injections to grow those little life saving stem cells and start harvest this week for admission to the hospital on June 1st for transplant.
Good luck to you.
So sorry for your diagnosis. My husband was diagnosed at age 58 this last December. He has been on CyBorD as well. He finished 4 months of induction treatments the last of April and really the only side effects he had from it was to feel much better.
His creatinine at the time of diagnosis was 5.0 and had to be admitted to the hospital for renal failure at the beginning of diagnosis. They started him on dex and flushed hard with fluids to jump start the kidney function. He had lesions on ribs and lower back with pain from both and anemia. He also received 2 units of blood at the time.
Now he is in remission with no detectable myeloma in the bone marrow (70% plasma cells at time of diagnosis) and feels good. He has started his injections to grow those little life saving stem cells and start harvest this week for admission to the hospital on June 1st for transplant.
Good luck to you.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: New member, my kappa light chain story
Many thanks for the responses. My plasma cells were also 70% at diagnosis, so it sounds like I am very similar to your husband, Cathy. I am awaiting a blood test this week to see how close I am to remission before the transplant.
The stem cell transplant is very daunting right now, although reading about others' experiences really does help. Think I may be a regular on here over the coming weeks/months, so will post again once back in the UK.
Thanks again, and best wishes to everyone.
The stem cell transplant is very daunting right now, although reading about others' experiences really does help. Think I may be a regular on here over the coming weeks/months, so will post again once back in the UK.
Thanks again, and best wishes to everyone.
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John N - Name: John N
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 2016
- Age at diagnosis: 53
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