I am a 65 year old male, diagnosed in January 2017. I am pretty fit and a regular competitive cyclist. I finished the fourth cycle of Velcade, thalidomide, and dexamethasone (VTD) about five weeks ago. Up till then it had been pretty easy, and I was still managing around 120+ miles a week, albeit a tad down on performance. In most respects life was normal with no obvious side effects apart from a little tiredness. My blood results are all normal, and I am showing a good response, having plateaued at 3.6. I am now waiting for a stem cell transplant in August and harvesting is in two weeks.
But, right after my final Velcade, things went downhill in three ways.
My sleep pattern has completely changed and now sleep is very sporadic and shallow.
Then I began to feel constantly fatigued to the point that climbing stairs is difficult and my legs are like lumps of lead.
And my feet are constantly aching and tingling from what I guess is neuropathy.
Right now I have changed from complete optimism to a degree of pessimism even though logic tells me that my problems are probably side effects and that my core numbers are still looking good. It would reassure me greatly to hear whether my experience is typical or at least a likely explanation.
Thanks.
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Re: Sleep disruption, fatigue, tingling feet while on VTD
Don't get too frustrated, Rory. The side effects you're experiencing can happen, but most likely they will not stay with you forever.
The neuropathy you're experiencing is something you should make sure to report to your oncologist. Both Velcade and thalidomide can cause neuropathy, and the neuropathy can be long-lasting if the nerve damage that is occurring becomes too severe. So your doctor should know about the neuropathy and its severity so that dose or medication adjustments can be made, as necessary.
The sleep disruption can be due to a number of factors, including the "dexamethasone roller coaster," as it's often described. Of course, the sleep disruption is also probably contributing to the fatigue that you're experiencing.
As you probably know, thalidomide originally was marketed as a sleep aid, so it is very likely to make you tired. If you continue to take it, you should keep in mind its potential sleep-related side effect.
You also can experiment some to find out when it's best for you to take the dex (in terms of its impact on your sleep).
Good luck!
The neuropathy you're experiencing is something you should make sure to report to your oncologist. Both Velcade and thalidomide can cause neuropathy, and the neuropathy can be long-lasting if the nerve damage that is occurring becomes too severe. So your doctor should know about the neuropathy and its severity so that dose or medication adjustments can be made, as necessary.
The sleep disruption can be due to a number of factors, including the "dexamethasone roller coaster," as it's often described. Of course, the sleep disruption is also probably contributing to the fatigue that you're experiencing.
As you probably know, thalidomide originally was marketed as a sleep aid, so it is very likely to make you tired. If you continue to take it, you should keep in mind its potential sleep-related side effect.
You also can experiment some to find out when it's best for you to take the dex (in terms of its impact on your sleep).
Good luck!
Re: Sleep disruption, fatigue, tingling feet while on VTD
For the neuropathy, my oncologist prescribed gabapentin. I started with 300 mg, but noticed I was light headed when I laid down to sleep, so I reduced dosage to 100 mg (your mileage may vary). I also take alpha lipoic acid and acetyl L carnitine supplements. I no longer have neuropathy, 4 1/2 years after diagnosis, but still take this. Accept the fatigue, I nap after lunch an hour or two.
Good luck with your journey. Fighting multiple myeloma ain't for sissies!
Good luck with your journey. Fighting multiple myeloma ain't for sissies!
-
bbb
Re: Sleep disruption, fatigue, tingling feet while on VTD
Rory,
Your experience mirrors mine. Your physical fitness was far better than me. I was diagnosed 6 1/2 years ago but was sick from myeloma for an appreciable time prior to my multiple myeloma diagnosis. I started at stage 1 and remain near that stage today.
Within a few weeks of starting Velcade and dexamethasone treatment, weakness was disturbing, including shortness of breath. By the stem cell transplant recovery within 10 months I had very minor neuropathy in my fingers and toes. My sleep disturbance and weakness continues anytime I take dex. It is a powerful steroid and searching here will reveal more than you want to know. It has been an outstanding cornerstone of my treatment but I sure don't like the stuff. One needs to watch for sleep problems, hyperactivity followed be a drug-induced crash, and "roid rage" (serious), and disturbing weakness.
I was on two years of maintenance with Revlimid, a derivative of thalidomide, but I had to stop due to side effects, continuing minor neuropathy, weakness, and cognitive problems around memory mostly.
My early diagnosis included bone lesions (hole to the outer bone) in my hip and skull. I mention this because you are a bike rider and falls happen. Bone disease from myeloma is one of its serious symptoms affecting skeletal groups, like lower backs and leg structures. It is treatable, in my case Zometa. I have a multiple history of orthopaedic trauma due to football. I take precautions, but bone disease concerns do not frighten me or control me. I suspect you and I are cut from the same cloth in such matters.
Now I'm on a trial study due to a serious relapse last year, Dex and a lot more! Over the long haul killing myeloma is quality of life.
The hardest battle for me has become a resistance and resentment to treatment. It is an understandable reaction but in my case a dangerous attitude. I hate cancer not effective treatment warts and all.
I'm sure sad you got cancer. It's a bum deal. Your can-do attitude will carry you far.
Your experience mirrors mine. Your physical fitness was far better than me. I was diagnosed 6 1/2 years ago but was sick from myeloma for an appreciable time prior to my multiple myeloma diagnosis. I started at stage 1 and remain near that stage today.
Within a few weeks of starting Velcade and dexamethasone treatment, weakness was disturbing, including shortness of breath. By the stem cell transplant recovery within 10 months I had very minor neuropathy in my fingers and toes. My sleep disturbance and weakness continues anytime I take dex. It is a powerful steroid and searching here will reveal more than you want to know. It has been an outstanding cornerstone of my treatment but I sure don't like the stuff. One needs to watch for sleep problems, hyperactivity followed be a drug-induced crash, and "roid rage" (serious), and disturbing weakness.
I was on two years of maintenance with Revlimid, a derivative of thalidomide, but I had to stop due to side effects, continuing minor neuropathy, weakness, and cognitive problems around memory mostly.
My early diagnosis included bone lesions (hole to the outer bone) in my hip and skull. I mention this because you are a bike rider and falls happen. Bone disease from myeloma is one of its serious symptoms affecting skeletal groups, like lower backs and leg structures. It is treatable, in my case Zometa. I have a multiple history of orthopaedic trauma due to football. I take precautions, but bone disease concerns do not frighten me or control me. I suspect you and I are cut from the same cloth in such matters.
Now I'm on a trial study due to a serious relapse last year, Dex and a lot more! Over the long haul killing myeloma is quality of life.
The hardest battle for me has become a resistance and resentment to treatment. It is an understandable reaction but in my case a dangerous attitude. I hate cancer not effective treatment warts and all.
I'm sure sad you got cancer. It's a bum deal. Your can-do attitude will carry you far.
-
Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Sleep disruption, fatigue, tingling feet while on VTD
I am on Revlimid and dexamethasone. I have terrible insomnia and tingling feet, which my doctor says is damage from when I took thalidomide after my autologous stem cell transplant. He took me off it as soon as i complained of tingling in my feet. Then he changed me to Revlimid.
Apart from this, I don't have many other side effects except feeling nauseous quite often, but Pramin (metoclopramide) fixes that. I think I am one of the lucky myeloma sufferers!
Apart from this, I don't have many other side effects except feeling nauseous quite often, but Pramin (metoclopramide) fixes that. I think I am one of the lucky myeloma sufferers!
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