Greetings all:
I was diagnosed with multiple myeloma on July 15. Had a big chest wall tumor, treated with ten days of rad in eerly Aug. Also had a bone marrow biopsy to confirm diagnosis. No organ involvement. Went to Mayo last week - they rate me as "Standard risk" on their three level scale (the lowest risk category)
I am 61, and live in a small midwestern city. Mayo is running the treatment show in cooperation with my local cancer center (I had prostate cancer 13 yrs ago, with surgery and follow up rad, so I know my way around the center).
Treatment plan, per Mayo: Revlimid from Labor day to News Year day, give or take - 3 wks out of four. And dex as well (one day a week, I believe).... Then Auto SCT in Jan Feb at Mayo...I know that will be a bit of a tough ride...
I am worried about dex - understand it will make me crazy hyper... Is that true?? how do people manage this side effect... The Revlimid seems mostly to be a diarreha issue - are there other significant side effects. I hope to work this fall (college prep)...
i know I haven't provided any labs here - they are at home... I recall I have about 40% "bad" cells in my hip biopsy... but no bone or organ involvement and kidney function is OK - slightly anemic... Iga was about 1200, I believe. and M protein was about 3 (?)
So any thoughts about dex and managing the fall treatment?? What Other ?? I should be asking the Mayo folks...
many thanks
Wesley
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10 posts
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: Newly diagnosed - worried about dex side effects...
And is M spike the best "summary" data point for tracking disease severity?
Thanks
Wesley
Thanks
Wesley
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: Newly diagnosed - worried about dex side effects...
You don't say what doses of Revlimid and of Dex that you will be taking. The side effects of each of the drugs varies from person to person. During my induction period, which is what you will be starting, I was taking 15 mg of Rev and 40 mg of Dex. I took both of them in the morning. The Dex caused me to lose sleep for 2-3 nights and then crash on the 3rd day. I also got extremely hot. I was hyper on the first day and had some shortness of my temper, but usually was aware of when it was happening and could control it. After a few months I started taking the Dex at night and was able to sleep the first night, slept a little better the 2nd night and still crashed on the 3rd day. One of the benefits of being really hot was that as a physical therapist my patients loved my Dex days because they said that I had hot pack hands.
I really didn't have any problems with the Revlimid. But, the combination of the 2 led to severe muscle cramping at night. The cramping was mostly in my feet and legs, but the cramping could occur anywhere in my body. During the day I would occasionally get cramping in my hands when I was using them a lot treating my patients. Stretching before bed and drinking a cider vinegar tonic lessened the cramping somewhat, but not completely. Tonic water and all of the other remedies that people will tell you to try didn't work with me.
Now, I am back on treatment with 15 mg of Rev and 20 mg of Dex. The lower dose of Dex is better tolerated by me and I rarely get cramping now. I still get really hot and sweat through the first night. I don't crash like I used to on the 3rd day although I am more tired on that day. I don't have the irritability that I would often get. My first round of the Rev I had some rash that I treated with Benadryl for a couple of days. Occasionally towards the end of the 21 days I will either have a couple of days with constipation and hard stools or a couple days of loose stools. But, both are manageable.
I respond really well and quickly to the Rev/Dex combination. So, the relatively minor side effects are ok with me since the drugs are keeping my multiple myeloma at a low roar. In fact my last blood work came back the best that it's been in a couple of years when I was in CR from the ASCT. I've been on this drug regimen since Dec. last year.
Good luck with your treatment. If you go ahead with the ASCT at the beginning of next year, know that it isn't as bad as we all fear ahead of time. My experience was quite uneventful. I enjoyed the 2 week rest in the hospital with only a couple of days feeling totally depleted when my blood levels hit rock bottom.
Nancy in Phila
I really didn't have any problems with the Revlimid. But, the combination of the 2 led to severe muscle cramping at night. The cramping was mostly in my feet and legs, but the cramping could occur anywhere in my body. During the day I would occasionally get cramping in my hands when I was using them a lot treating my patients. Stretching before bed and drinking a cider vinegar tonic lessened the cramping somewhat, but not completely. Tonic water and all of the other remedies that people will tell you to try didn't work with me.
Now, I am back on treatment with 15 mg of Rev and 20 mg of Dex. The lower dose of Dex is better tolerated by me and I rarely get cramping now. I still get really hot and sweat through the first night. I don't crash like I used to on the 3rd day although I am more tired on that day. I don't have the irritability that I would often get. My first round of the Rev I had some rash that I treated with Benadryl for a couple of days. Occasionally towards the end of the 21 days I will either have a couple of days with constipation and hard stools or a couple days of loose stools. But, both are manageable.
I respond really well and quickly to the Rev/Dex combination. So, the relatively minor side effects are ok with me since the drugs are keeping my multiple myeloma at a low roar. In fact my last blood work came back the best that it's been in a couple of years when I was in CR from the ASCT. I've been on this drug regimen since Dec. last year.
Good luck with your treatment. If you go ahead with the ASCT at the beginning of next year, know that it isn't as bad as we all fear ahead of time. My experience was quite uneventful. I enjoyed the 2 week rest in the hospital with only a couple of days feeling totally depleted when my blood levels hit rock bottom.
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: Newly diagnosed - worried about dex side effects...
Hi Wesley,
EJ's induction treatment was Velcade and high dose dex. Sorry I don't remember how much. After two cycles, they lowered the dex, saying they found they could get the same results at a lower dosage level. As Nancy mentions, the dex caused a couple of sleepless nights, followed by a crash. EJ kind of enjoyed the extra energy, and on dex days would stay up late working on projects! When life gives you lemons, make lemonade, I guess.
I've seen a few posts on this site from people who found that taking the dex at different times of the day helped them manage the highs and lows.
Hope that helps,
Lyn
EJ's induction treatment was Velcade and high dose dex. Sorry I don't remember how much. After two cycles, they lowered the dex, saying they found they could get the same results at a lower dosage level. As Nancy mentions, the dex caused a couple of sleepless nights, followed by a crash. EJ kind of enjoyed the extra energy, and on dex days would stay up late working on projects! When life gives you lemons, make lemonade, I guess.
I've seen a few posts on this site from people who found that taking the dex at different times of the day helped them manage the highs and lows.
Hope that helps,
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Newly diagnosed - worried about dex side effects...
Been on 25mg of Revlimid and 40 mg of dex since last June, except for a 4 month break preparing for stem cell harvest. First day on dex is fine except can't sleep at night , dr has given me ambien. Second day I refer to as turbo Tuesday as I has a lot of energy. The 3rd day is the worse husband calls it witchy Wednesday ,don't even say good morning . Doctor has given me Xanax . If I feel like I am going to lose it I take one. I will put up with the side effects of the rev/dex as long as it keeps my numbers down and never have to use the stem cells that they have frozen for me.
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morrow1022
Re: Newly diagnosed - worried about dex side effects...
Dex cause me to lose sleep. I tried to deal with it for awhile and finally started taking a sleeping pill, once a week to get a good night of sleep. I now take my dex at night, as opposed to the morning, as I can get a fairly good night of sleep that first night, before it "kicks in" Just do not be afraid to take a sleeping pill - in order to deal with anything, one needs rest! Another side effect I had was a fleshy/fatty deposit at the base of my neck. It was just in the front, but I have been told it can happen to the back of the neck as well. My face got fuller, too. When the steroid was decreased, those both went away. It might cause you to eat more than normal, so keep that in mind. I was on it for over 18 months, when it started doing a number on my veins, too. They are not as prominent as they once were. But the nurses still are sooo good at sticking me. So, yes, it causes problems, but it helps so much, too. It helped get me into a remission and I hope the best for you, too. Please do not be afraid to take it. Now you are a bit more informed, so you can deal with things. Remember, it Helps!!! Best of luck to you!!
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Joannet
Re: Newly diagnosed - worried about dex side effects...
I think Nancy gave the wright answer
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Al-Nawas
Re: Newly diagnosed - worried about dex side effects...
I had 5 months of RVD starting in 1/17/10.40mgs of of Dex with my chemo every Monday 8 am
After sitting still for 3 hrs getting juiced I went to gym to walk on treadmill and ride stationary bike
Very hard to sleep at nite took nice naps during the day by wood stove in winter
Live in New Jersy cold winters by mid week I felt drained but still pushed myself to get to gym early in morning.whatever you can do to keep exercising will increase your chances of dealing with roller coster ride physically and emotionally.3 years later I have personal trainer 2 days a week and also get in pool as often as I can.Try and stay active and rest when you feel pain
64 years old and Non Secretory multiple myeloma man live 6 months to 6 months for next Pet
Survived 2 stem cell transplants and Shingles
STAY STRONG multiple myeloma PEOPLE!!
After sitting still for 3 hrs getting juiced I went to gym to walk on treadmill and ride stationary bike
Very hard to sleep at nite took nice naps during the day by wood stove in winter
Live in New Jersy cold winters by mid week I felt drained but still pushed myself to get to gym early in morning.whatever you can do to keep exercising will increase your chances of dealing with roller coster ride physically and emotionally.3 years later I have personal trainer 2 days a week and also get in pool as often as I can.Try and stay active and rest when you feel pain
64 years old and Non Secretory multiple myeloma man live 6 months to 6 months for next Pet
Survived 2 stem cell transplants and Shingles
STAY STRONG multiple myeloma PEOPLE!!
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Gil siegel
Re: Newly diagnosed - worried about dex side effects...
I was diagnosed in 1/11 and started RVD in 3/11. I was taking Dex, 40 mg, 3 - 4 times a week for three week periods and then a week off. The dex made me feel irritable and caused my blood sugar to rise to diabetic levels. The worst for me however is when I would come off the dex. Apparently the dex caused my adrenal gland to think there was no need to manufacture natural steriods even when I was off the dex. I felt like I had a bad case of the flu and would literally be shaking from feeling chilled. I also started running temps of over 102 degrees for which they could find no cause. My oncologist put me on a low dose of dex and my temp returned to normal. He then slowly weaned me off the steriod. The last round of induction we did the RV without the D and I did fine.
I think the dex is over prescribed and I have noticed that in the last few years they have lowered the dosage for treatment. I also know that everyone is different and what may have worked out fine for me does not necessarily mean that you or anyone else will have the same outcome. I do wish you the best and that "the best" will come with no or limited side effects
I think the dex is over prescribed and I have noticed that in the last few years they have lowered the dosage for treatment. I also know that everyone is different and what may have worked out fine for me does not necessarily mean that you or anyone else will have the same outcome. I do wish you the best and that "the best" will come with no or limited side effects
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: Newly diagnosed - worried about dex side effects...
HI Wesley,
Dex can certainly make things a little topsy turvey. How it affects you will depend on the dose you are on and how often.
I have been on;
40 mg for 4 days, one week on and one week off - this was for ~ 4 months
40 mg one day/week - this was for ~ 9 months then another stint of ~ 4 months
currently I am on prednisolone (another steroid) 10mg/day, this dose is approximately the same as 1 mg of dex (so not much). However when I started taking the prednisolone (September 2011) I was on 160 mg/day.
I had hallucinations after my first dose of dex. One of the oncologists said "Oh yes, that happens in the dex naive".
I would have different tactics for the different regimens.
If I was only take dex once a week I would get up at ~3 in the morning and take my tablets with a drink of milk then go back to bed. I found doing this didn't disturb my sleep as much. It also meant I was hungry when I woke up for breakfast. Dex would make me ravenous (I am trying to get the weight off).
That night I would take a sleeping tablet to ensure I got at least 3 hours of sleep.
When I was taking 40 mg for the 4 days getting up at 3 didn't work, well it did for the first day but its trying to get to sleep for the next couple. I would sort clothes, write, etc in the middle of the night.
My blood sugar certainly increased while on the dex and I was an insulin dependent diabetic when on the 160 mg of prednisolone. My advice is to stay away from the sugary food/simple carbohydrates when on dex.
I found I was less tolerant when on dex. An example is someone told me the reason I had multiple myeloma was because I didn't eat fruit. Not on dex I may have risen my eyebrows at this comment but whilst on dex I said "For @#$% sake".
When I was on the dex for the 4 days my voice would get higher by the 4th day and would take a day or two to return to normal. I also noticed a difference in my eyesight.
I would have night sweats, really wringing wet pjs. Avoiding carbohydrates at night (pasta, rice, pastry) helped me.
Apparently there is a difference in the fat deposition in your body when you are on dex - it is apparent in me. I have a few extra tyres around my midsection than I used to. I think Cushings syndrome is the name they give it (Moonface, change in fat deposition, back of the neck etc.). Now that my prednisolone dose is decreasing my shape is slowly (very slowly) going back to normal (hopefully).
All the best for your treatment,
Libby
Dex can certainly make things a little topsy turvey. How it affects you will depend on the dose you are on and how often.
I have been on;
40 mg for 4 days, one week on and one week off - this was for ~ 4 months
40 mg one day/week - this was for ~ 9 months then another stint of ~ 4 months
currently I am on prednisolone (another steroid) 10mg/day, this dose is approximately the same as 1 mg of dex (so not much). However when I started taking the prednisolone (September 2011) I was on 160 mg/day.
I had hallucinations after my first dose of dex. One of the oncologists said "Oh yes, that happens in the dex naive".
I would have different tactics for the different regimens.
If I was only take dex once a week I would get up at ~3 in the morning and take my tablets with a drink of milk then go back to bed. I found doing this didn't disturb my sleep as much. It also meant I was hungry when I woke up for breakfast. Dex would make me ravenous (I am trying to get the weight off).
That night I would take a sleeping tablet to ensure I got at least 3 hours of sleep.
When I was taking 40 mg for the 4 days getting up at 3 didn't work, well it did for the first day but its trying to get to sleep for the next couple. I would sort clothes, write, etc in the middle of the night.
My blood sugar certainly increased while on the dex and I was an insulin dependent diabetic when on the 160 mg of prednisolone. My advice is to stay away from the sugary food/simple carbohydrates when on dex.
I found I was less tolerant when on dex. An example is someone told me the reason I had multiple myeloma was because I didn't eat fruit. Not on dex I may have risen my eyebrows at this comment but whilst on dex I said "For @#$% sake".
When I was on the dex for the 4 days my voice would get higher by the 4th day and would take a day or two to return to normal. I also noticed a difference in my eyesight.
I would have night sweats, really wringing wet pjs. Avoiding carbohydrates at night (pasta, rice, pastry) helped me.
Apparently there is a difference in the fat deposition in your body when you are on dex - it is apparent in me. I have a few extra tyres around my midsection than I used to. I think Cushings syndrome is the name they give it (Moonface, change in fat deposition, back of the neck etc.). Now that my prednisolone dose is decreasing my shape is slowly (very slowly) going back to normal (hopefully).
All the best for your treatment,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
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