I was recently diagnosed and have started treatment with cyclophosphamide, Velcade, and dexamethasone (CyBorD). Kidney function is very poor, and I am on the verge of needing dialysis. I live alone on Cape Cod and have to drive myself to the hospital for weekly treatments. Dana Farber wants to evaluate me for a stem cell transplant. I was told that if they do it, I will be kept there for a couple of weeks during the procedure.
I have only had two treatments so far. I drove there today for my third treatment, but they sent me home without doing it. The nurse couldn't find a vein and I almost passed out, so she suggested I skip it for this week. I have another appointment for next week.
I was working full time until November when I was hospitalized for kidney failure and it was discovered I had this disease.
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Re: 62 years old & light chain deposition multiple myeloma
Welcome to the forum, Donna. I'm sorry, of course, that you have to be here, and I'm particularly sorry that you've had a rough road so far. I really hope it gets better soon for you.
It sounds like you have both light chain deposition disease (LCDD) and multiple myeloma. It is rather common, I believe, for people with light chain deposition disease to have multiple myeloma at the same time.
You can find most of the forum discussions related to LCDD by just typing "deposition" into the forum search box. Two threads that you may find particularly helpful are:
"Light Chain Deposition Disease (LCDD) & Multiple Myeloma" (started May 5, 2013)
"Light chain deposition disease (LCDD) info?" (started Sep 18, 2014)
There also are a lot of useful links to discussions about different treatments and side effects in this forum post.
It's good that you are under the care of doctors at Dana-Farber. There are a number of experienced myeloma specialists there.
One thing you may want to find out is if it would be possible for you to get your Velcade injections someplace closer to you. Perhaps there is an oncology office closer to you where you could have the injections done?
Wishing you the best,
Cheryl
It sounds like you have both light chain deposition disease (LCDD) and multiple myeloma. It is rather common, I believe, for people with light chain deposition disease to have multiple myeloma at the same time.
You can find most of the forum discussions related to LCDD by just typing "deposition" into the forum search box. Two threads that you may find particularly helpful are:
"Light Chain Deposition Disease (LCDD) & Multiple Myeloma" (started May 5, 2013)
"Light chain deposition disease (LCDD) info?" (started Sep 18, 2014)
There also are a lot of useful links to discussions about different treatments and side effects in this forum post.
It's good that you are under the care of doctors at Dana-Farber. There are a number of experienced myeloma specialists there.
One thing you may want to find out is if it would be possible for you to get your Velcade injections someplace closer to you. Perhaps there is an oncology office closer to you where you could have the injections done?
Wishing you the best,
Cheryl
Re: 62 years old & light chain deposition multiple myeloma
Donna,
Are you getting the Cytoxan by infusion? One thing that the nurses told me at the beginning when they would have trouble accessing a vein is to make sure that I drank plenty of fluids before coming for treatment. This helps to plump up the veins and makes them easier to find and use. You may also ask about getting a port put in. I have one now for some other treatments that I'm now getting, and it has made life so much easier and more comfortable. Blood can be drawn for labs and infusions done through the port.
All the best as you move forward,
Nancy in Phila
Are you getting the Cytoxan by infusion? One thing that the nurses told me at the beginning when they would have trouble accessing a vein is to make sure that I drank plenty of fluids before coming for treatment. This helps to plump up the veins and makes them easier to find and use. You may also ask about getting a port put in. I have one now for some other treatments that I'm now getting, and it has made life so much easier and more comfortable. Blood can be drawn for labs and infusions done through the port.
All the best as you move forward,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: 62 years old & light chain deposition multiple myeloma
Hi Donna,
I am glad you found this website. It is a great resource, even for emotional support. I hope you improve and are able to continue treatment soon. My best to you.
I am glad you found this website. It is a great resource, even for emotional support. I hope you improve and are able to continue treatment soon. My best to you.
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Hosanna - Name: Hosanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Nov. 2016
- Age at diagnosis: 62
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