I have just started treatment this last week and am wondering if there it is possible to change the dex dosing day by one ahead or behind to better plan around the crash.
I had to stay on the couch or sleep most of the crash day. It was a wipeout! Freezing cold, shivering, but no fever.
Also, I have a rash on my face, arms, and scalp. Not terribly itchy, looks like a sunburn.
Any comments would be appreciated. I'm on Revlimid, Velcade, and dex (RVD) – standard induction routine.
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loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
Re: Changing dexamethasone dosing days
Hi. Love your screen name; I, too, love Paris. But who doesn't!??
Not sure if changing the dosing days will make that much of a difference, You'll just postpone or change or delay the inevitable feeling/reaction that it generates in you.
I'd suggest talking about it with your doctor S/he will possibly tell you that the drugs are prescribed in the amount and on the schedule that they are for a reason.
Unfortunately the dex hits a lot of people hard and no matter when you take it, you'll have some reaction to it. Get ready for a long trip of annoying and sometimes painful side effects, to say the least.
The rash sounds like something that you should definitely and promptly speak to your doctor about.
Not sure if changing the dosing days will make that much of a difference, You'll just postpone or change or delay the inevitable feeling/reaction that it generates in you.
I'd suggest talking about it with your doctor S/he will possibly tell you that the drugs are prescribed in the amount and on the schedule that they are for a reason.
Unfortunately the dex hits a lot of people hard and no matter when you take it, you'll have some reaction to it. Get ready for a long trip of annoying and sometimes painful side effects, to say the least.
The rash sounds like something that you should definitely and promptly speak to your doctor about.
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tmcd - Name: TMcD
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 52
Re: Changing dexamethasone dosing days
Hi loveparis!
Induction therapy for my husband was CyBorD – Cytoxan, Velcade and dex. The dex was prescribed by our local oncologist as 40 mg to be taken on the morning of his chemo. When we met with the myeloma specialist, she changed the dosing days to 20 mg on chemo day and 20 mg the next morning. That seemed to suit my husband better because my husband had trouble falling asleep on the 40 mg at one time. A couple days after the dex, he was achy and tired, but manageable.
I would be concerned about the rash; Velcade can cause a rash. My husband received Velcade by injection into the abdominal area and he developed a slight rash with each injection and later on during induction, the Velcade caused blepharitis (inflammation of the eyelids, known as "Velcade eyes"). He got a prescription for erythromycin ointment to put on the eyelids and that helped calm down the situation.
I would definitely be speaking with your oncologist about the rash, before your next scheduled chemo. Good luck with your journey! The Myeloma Beacon is a good source of support and information for those of you on the path to remission.
Induction therapy for my husband was CyBorD – Cytoxan, Velcade and dex. The dex was prescribed by our local oncologist as 40 mg to be taken on the morning of his chemo. When we met with the myeloma specialist, she changed the dosing days to 20 mg on chemo day and 20 mg the next morning. That seemed to suit my husband better because my husband had trouble falling asleep on the 40 mg at one time. A couple days after the dex, he was achy and tired, but manageable.
I would be concerned about the rash; Velcade can cause a rash. My husband received Velcade by injection into the abdominal area and he developed a slight rash with each injection and later on during induction, the Velcade caused blepharitis (inflammation of the eyelids, known as "Velcade eyes"). He got a prescription for erythromycin ointment to put on the eyelids and that helped calm down the situation.
I would definitely be speaking with your oncologist about the rash, before your next scheduled chemo. Good luck with your journey! The Myeloma Beacon is a good source of support and information for those of you on the path to remission.
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ByYourSide - Name: Susan
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 65
Re: Changing dexamethasone dosing days
Hi Loveparis,
Definitely let your doctor know about the rash you've developed. In rare cases, Revlimid can cause a condition known as Stevens-Johnson syndrome. Basically, it's a REALLY severe rash – so severe that it can be life threatening. I believe at least one member of the forum (Castaway?) was taking Revlimid, developed a persistent rash, and eventually was taken off Revlimid because his doctor was worried that he might develop Stevens-Johnson syndrome.
So your doctors will want to know about the rash so they can judge whether or not it indicates you may be at risk of developing Stevens-Johnson.
Good luck!
Definitely let your doctor know about the rash you've developed. In rare cases, Revlimid can cause a condition known as Stevens-Johnson syndrome. Basically, it's a REALLY severe rash – so severe that it can be life threatening. I believe at least one member of the forum (Castaway?) was taking Revlimid, developed a persistent rash, and eventually was taken off Revlimid because his doctor was worried that he might develop Stevens-Johnson syndrome.
So your doctors will want to know about the rash so they can judge whether or not it indicates you may be at risk of developing Stevens-Johnson.
Good luck!
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Jonah
Re: Changing dexamethasone dosing days
Thank you for the reply, I did speak to the oncology office yesterday and the nurse said that the scalp itching often comes with dex. The other parts of the body affected could be from Velcade but most likely Revlimid. Today seems a little better but continues to change.
I am aware of the Stevens-Johnson syndrome and this is definitely not that. They will look at it when I go in for Velcade tomorrow. Some relief with topical anti-itch cream.
Thanks for your thoughts LP
I am aware of the Stevens-Johnson syndrome and this is definitely not that. They will look at it when I go in for Velcade tomorrow. Some relief with topical anti-itch cream.
Thanks for your thoughts LP
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loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
Re: Changing dexamethasone dosing days
I had dex trouble with insomnia. Took 12 mg every week. Doc just changed me to 18 the first 2 days of starting Velcade. Doing better.
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Horsepowe
Re: Changing dexamethasone dosing days
Hi,
I would talk to your doctor about the possibility of changing your dex dosing. My husband experienced very significant fatigue due to the dex crash which lasted 2-3 days of each week. His dose was decreased from 20 to 12 mg, but he still had the significant fatigue. At his last visit, they decided he could try talking one 4 mg tablet on Monday, Wednesday, and Friday (instead of all three tablets on Mondays). This helped a lot! The only time he started feeling some fatigue was during the day Monday, but since he took his next dex Monday night, he felt more energized on Tuesday.
Chris M.
I would talk to your doctor about the possibility of changing your dex dosing. My husband experienced very significant fatigue due to the dex crash which lasted 2-3 days of each week. His dose was decreased from 20 to 12 mg, but he still had the significant fatigue. At his last visit, they decided he could try talking one 4 mg tablet on Monday, Wednesday, and Friday (instead of all three tablets on Mondays). This helped a lot! The only time he started feeling some fatigue was during the day Monday, but since he took his next dex Monday night, he felt more energized on Tuesday.
Chris M.
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Chris M
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