thanks, as all of your answers and the columns mentioned by beacon staff help me understand a tiny bit what it's like to be on dex and the med. coctail in total. it seems to be a very individual journey where one constantly needs to re-evaluate what one can tolerate / what helps.
a good day to everyone! h
Forums
Re: Dexamethasone with Revlimid and Velcade
I started on RVD just a little over a year a go.
I started with 20mg of dex 100mg rev once aweek shot of Velcade, I do this one shot a week of Velcade, Revlimid 4x a week, dex once a week. My doc said he doesn't like the high doses of dex because it also attacks your bones and so about 6 months ago we dropped my dose to 10 mg once a week.
I have so far been fairly lucky that I have been progressing closer to complete remission with few side effects. I do have problems of sleep on the night i take the dex. I take Ambien. Sometimes it works, sometimes it doesn't.
Oh also i didn't notice any difference after the reduction in my dex intake, whatever that means.
Marv
I started with 20mg of dex 100mg rev once aweek shot of Velcade, I do this one shot a week of Velcade, Revlimid 4x a week, dex once a week. My doc said he doesn't like the high doses of dex because it also attacks your bones and so about 6 months ago we dropped my dose to 10 mg once a week.
I have so far been fairly lucky that I have been progressing closer to complete remission with few side effects. I do have problems of sleep on the night i take the dex. I take Ambien. Sometimes it works, sometimes it doesn't.
Oh also i didn't notice any difference after the reduction in my dex intake, whatever that means.
Marv
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gmarv54
Re: Dexamethasone with Revlimid and Velcade
I am on a clinical trial with carfilzomib [Kyprolis]and I take dexamethasone (20 mg) on Tuesday and Wednesday of every week. I have tried Xanax and Ativan for sleeping but I wake up about 2 AM. I then started taking a melatonin (5mg) with the Ativan before I go to bed and I sleep thru the night most of the time. As for the jitters during the day, Xanax works good for me, usually .25 mg in the morning does the trick.
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Jon49
Re: Dexamethasone with Revlimid and Velcade
Usually the next day after taking it, I get hit with the hiccups...not enjoyable for a guy with fractured ribs. The doc initially prescribed me low doses of Thorazine (known in the mental wards as a chemical straight jacket) to control the hiccups...but really nothing helped them except now it stopped being a side-effect. Still, it keeps me awake at night. Take Ativan to chill me at night, but not hugely effective. Told the doc and was later prescribed mirtazipine...but holy smokes...that was way too much.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: Dexamethasone with Revlimid and Velcade
I took the Dex in the morning and it had less impact on falling asleep at night. The biggest impact was the wild swings in body temperature. One minute I was freezing, the next I was burning up.
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Spalmer - Name: Scott Palmer
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 6/2013
- Age at diagnosis: 46
Re: Dexamethasone with Revlimid and Velcade
@Standingtall: For hiccups, heat ginger ale and then steep a regular tea bag in it. I had hiccups bad with four compression fractures, and it was horribly painful. This gimmick was given to me by the hospital RN and it worked for a good two or three hours before they returned. At last it was temporary relief.
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Spalmer - Name: Scott Palmer
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 6/2013
- Age at diagnosis: 46
Re: Dexamethasone with Revlimid and Velcade
My mom has been taking this same treatment and just recently started the second set after having 7 days off. We got phone call today after her shot and blood work and they said no more chemo until she sees doctor on Tuesday. She has really big sores on her ankles and wrist and they are open in the middle that leak. She has no platelets and this is concerning also. My mom is very tired and wants to lay down all the time as her back and bones hurt, she is still able to be at home but is becoming very limited on what she can do which is not much. Can anyone give me advice on this. So new to this and very scared!
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Melissa64 - Name: Melissa
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 69
Re: Dexamethasone with Revlimid and Velcade
That's awful about your mother, Melissa!!
On page 3 (2nd paragraph) of this pdf link,
http://www.cancer.org/acs/groups/cid/documents/webcontent/003121-pdf.pdf
it briefly describes thrombocytopenia (low platelets) as leading to "increased bleeding and bruising". It could be a result of that or out of control infection? But docs would know best (as I just googled that link above with little work) and hopefully they will have a treatment designed based off of her new bloodwork.
Fatigue and pain are frankly going to be a combo of the multiple myeloma and chemo (or at least has been my experience) but maybe someone else can speak about the open sores. Hopefully your providers are all over it, especially pain management, but the best you can do is get in your mom's corner and be as descriptive to the doctors about what you observe and what your mom's everyday challenges look like.
I am new to multiple myeloma and all I know it is a hard start, please get lots of support and don't hesitate to advocate for mom!
On page 3 (2nd paragraph) of this pdf link,
http://www.cancer.org/acs/groups/cid/documents/webcontent/003121-pdf.pdf
it briefly describes thrombocytopenia (low platelets) as leading to "increased bleeding and bruising". It could be a result of that or out of control infection? But docs would know best (as I just googled that link above with little work) and hopefully they will have a treatment designed based off of her new bloodwork.
Fatigue and pain are frankly going to be a combo of the multiple myeloma and chemo (or at least has been my experience) but maybe someone else can speak about the open sores. Hopefully your providers are all over it, especially pain management, but the best you can do is get in your mom's corner and be as descriptive to the doctors about what you observe and what your mom's everyday challenges look like.
I am new to multiple myeloma and all I know it is a hard start, please get lots of support and don't hesitate to advocate for mom!
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: Dexamethasone with Revlimid and Velcade
Melissa - That is so hard to see your mother suffering like this. It hurts and i feel with you. I can only say that it seems to be an up and down and due to the age it's even slower and a bit further on the down edge. I also think it's due to the mixture of the medications - my father has had cancer (not multiple myeloma) for almost 10 years now and I see that pain/ fatigue thing also again and again. I'd certainly mention that to the doctors! Lots of patience to you -
Re: Dexamethasone with Revlimid and Velcade
Thanks for the feedback everyone, greatly appreciate all of it. I have tried to read up everything on multiple myeloma but so many different sites. My mom is in a wheelchair most f the time these days and was walking fine a year ago. So said to see her go down so fast, breaks my heart.
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Melissa64 - Name: Melissa
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 69
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