Hi Eric
Your points are good. What I did not know was that the bad dex effects are reversible usually, and obviously you are right on where the priorities should be. There is just so much negative stuff on dex side effects that I think I panicked a bit when I started hitting them.
Thanks for your great post.
Rob
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Thanks for the correction, Jonah. You and the other good folks who responded to my post have given me a lot to pursue. Really appreciate it.
Rob
Rob
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Just a note on carfilzomib. Keep a close eye out for cardiac changes - my oncologist at Dana Farber thinks heart damage from carfilzomib is happening more commonly than reported in the literature. This might especially important given your pre-existing diagnosis of heart disease. Don't simply blow off chest pain or shortness of breath.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Thanks, Tracy J. I got a list of potential effects when I started carfilzomib. Heart damage was listed, but not pointed out to me explicitly. Now it's on my watch list.
One thing I have noticed about fighting multiple myeloma is the challenge at the patient level in making sure there is a coordinated approach, so that those with co-morbidities (like me) don't discover that helping Peter is harming Paul. It appears that one can't always rely on one's doctors – as good as they may be – to cover that.
One thing I have noticed about fighting multiple myeloma is the challenge at the patient level in making sure there is a coordinated approach, so that those with co-morbidities (like me) don't discover that helping Peter is harming Paul. It appears that one can't always rely on one's doctors – as good as they may be – to cover that.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi Mr. Potatohead
I agree with Eric – the price of fighting multiple myeloma is often our vanity.
I quit using hair color and "anti-wrinkle creams" with hyaluronic acid because both have been implicated in stimulating multiple myeloma.
Going gray and wrinkly
is not nearly as difficult as facing the world with the dex "moon face" and gaining 10 pounds in about a week. I remember going to my daughters when my face seemed to balloon out overnight. I sat on the porch and cried. She is a teacher and she said, "When I watch a race, the one I am most inspired by is that kid at the end, who hasn't got a chance of winning, but he keeps running and doing his best."
That encouraged me. I took all the tight pants out of my closet and went and bought bigger clothes and when I would run into old friends and feel self conscious, I would remember the kid at the end of the race and how he kept running.
We know what you feel like. I am off dex now, but I learned a whole new meaning to humility.
Cathy
I agree with Eric – the price of fighting multiple myeloma is often our vanity.
I quit using hair color and "anti-wrinkle creams" with hyaluronic acid because both have been implicated in stimulating multiple myeloma.
Going gray and wrinkly
is not nearly as difficult as facing the world with the dex "moon face" and gaining 10 pounds in about a week. I remember going to my daughters when my face seemed to balloon out overnight. I sat on the porch and cried. She is a teacher and she said, "When I watch a race, the one I am most inspired by is that kid at the end, who hasn't got a chance of winning, but he keeps running and doing his best." That encouraged me. I took all the tight pants out of my closet and went and bought bigger clothes and when I would run into old friends and feel self conscious, I would remember the kid at the end of the race and how he kept running.
We know what you feel like. I am off dex now, but I learned a whole new meaning to humility.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi Cathy
Thanks for weighing in on the weight gain and moon face dilemma. Just getting the myeloma diagnosis was tough enough, and then you discover that an essential part of treatment can turn you into the Pillsbury Dough Boy. Discouraging, but should not be a show stopper.
So I am taking my steroids as prescribed. I'll reevaluate it all once I find a treatment that works. But until then, it's a matter of priorities. And it's hard to have any priorities if you aren't around.
Still, I am cutting way back on sugar, calories, and salt to minimize the chagrin when I look in the mirror.
Rob
Thanks for weighing in on the weight gain and moon face dilemma. Just getting the myeloma diagnosis was tough enough, and then you discover that an essential part of treatment can turn you into the Pillsbury Dough Boy. Discouraging, but should not be a show stopper.
So I am taking my steroids as prescribed. I'll reevaluate it all once I find a treatment that works. But until then, it's a matter of priorities. And it's hard to have any priorities if you aren't around.
Still, I am cutting way back on sugar, calories, and salt to minimize the chagrin when I look in the mirror.
Rob
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
RVD is common therapy. It is a combination of three drugs: Revlimid, Velcade and dex. I was on it after the drugs – Velcade plus Cytoxan plus dex (CyBorD), then Revlimid plus dex – no longer worked (which pooped out quickly, unfortunately). On the 3-drug combo RVD, it did bring numbers down for awhile when I was on the highest doses of Revlimid and Velcade. Unfortunately, I developed bad neuropathy from numerous rounds of high-dose Velcade, so they had to drop the dose. Since I had done 9 rounds of chemo total and was getting exhausted and numbers not moving, it was time for SCT (which also failed).
During drug therapy, I was on 16 mg of dex in divided doses, 8 mg one day, 8 mg the next. I find it hard to tolerate dex, too, especially in one large dose (get a splitting, terrible migraine that wakes me up at 2 AM). Dividing it took away the headache and helped somewhat with the other undesirable symptoms, such as insomnia and agitation. Unfortunately, it still gives a distended belly, which doesn't look attractive.
Anyhow, dex is used with almost all the chemo drugs since, besides working somewhat on its own, it also enhances the effect of the chemo drugs. The clinical studies proved the drugs worked better with dex. You want the advantage.
I'll be back on dex, but this time with Pomalyst. I'm not looking forward to it, either, but we do what we have to to survive. Since dex also increases appetite, this is a negative – especially if you have weight or cholesterol or sugar issues. Here's what I do during dex days: stay out of the kitchen between meals, make only healthy meals, be super mindful of what goes in the mouth, and eat nothing after 7 pm.
Hope something in this post helps.
During drug therapy, I was on 16 mg of dex in divided doses, 8 mg one day, 8 mg the next. I find it hard to tolerate dex, too, especially in one large dose (get a splitting, terrible migraine that wakes me up at 2 AM). Dividing it took away the headache and helped somewhat with the other undesirable symptoms, such as insomnia and agitation. Unfortunately, it still gives a distended belly, which doesn't look attractive.
Anyhow, dex is used with almost all the chemo drugs since, besides working somewhat on its own, it also enhances the effect of the chemo drugs. The clinical studies proved the drugs worked better with dex. You want the advantage.
I'll be back on dex, but this time with Pomalyst. I'm not looking forward to it, either, but we do what we have to to survive. Since dex also increases appetite, this is a negative – especially if you have weight or cholesterol or sugar issues. Here's what I do during dex days: stay out of the kitchen between meals, make only healthy meals, be super mindful of what goes in the mouth, and eat nothing after 7 pm.
Hope something in this post helps.
Last edited by Melpen on Sat Aug 22, 2015 6:34 pm, edited 1 time in total.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
So good to hear from you, Melissa! I have wondered how you were doing. So the extra time after the ASCT still didn't make much difference? Darn.
It seems people have extremely strong views on some of the complementary things I use, but I know you are open to my suggestions. So, here is a summary of what I have read might be bad for multiple myeloma and what might be good for multiple myeloma. I have a blood test the day after Labor Day weekend and an appointment with my oncologist September 15th, so I will know more how this is working out.
What I avoid:
Cathy
It seems people have extremely strong views on some of the complementary things I use, but I know you are open to my suggestions. So, here is a summary of what I have read might be bad for multiple myeloma and what might be good for multiple myeloma. I have a blood test the day after Labor Day weekend and an appointment with my oncologist September 15th, so I will know more how this is working out.
What I avoid:
- Gadolinium - used in MRI -
- Asparagus! (isn't that strange?)
- Hyaluronic acid - a supplement and in anti wrinkle cream
- Hair color - the reason I am highlighting my way toward gray
- Melatonin - another one that is supposed to be bad for blood cancer
- Folic Acid - if you get this from food it is OK, but in supplements it seems to stimulate multiple myeloma
- Iron.- I first saw this on this forum
- Glucosamine
- Alpha lipoic Acid - another supplement that is not good!
- Sugars and anything that raises blood glucose - which for me is carbs except vegetables.
- Curcumin C3 Complex with bioperine
- Omega 3
- Vitamin D
- EGCG- It is from green tea and I don't like green tea so I bought powdered green tea & put it in my smoothie
- Nigella sativa oil - I ordered this. It tastes like a pine tree - ha ha
- Horseradish - I have 1/2 tsp per day and mix it into whatever I am eating. It is in same family as broccoli but has 10x the isothiocyanates as broccoli!
- Ketogenic diet - which has a lot of coconut oil and canned full fat coconut milk. The dex will probably not make this possible since dex raised my blood glucose a lot.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi All
Cathy: I didn't know that about hair color and anti wrinkle cream! I just looked up the kind I use and sure enough that is a listed ingredient. Man, I just bought 2 jars! I am going to stop using it immediately. I will be losing all my hair soon as I am having an stem cell transplant, so the hair color doesn't matter right now. Maybe that is why my myeloma has been so resistant to treatment.
Thanks for the info.
Rhonda
Cathy: I didn't know that about hair color and anti wrinkle cream! I just looked up the kind I use and sure enough that is a listed ingredient. Man, I just bought 2 jars! I am going to stop using it immediately. I will be losing all my hair soon as I am having an stem cell transplant, so the hair color doesn't matter right now. Maybe that is why my myeloma has been so resistant to treatment.
Thanks for the info.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Very helpful, Melpen. Thank you.
Right now I am getting 20 mg of dex along with my twice-weekly carfilzomib (Kyprolis) infusions. On off days, I take 60 mg of prednisone.
I am going to adopt some of your measures - mindful of what I eat, and nothing after 7 pm. When all this started, I was losing weight like crazy and could not stomach anything. Now I am developing the opposite problem.
Good luck with the Pomalyst.
Right now I am getting 20 mg of dex along with my twice-weekly carfilzomib (Kyprolis) infusions. On off days, I take 60 mg of prednisone.
I am going to adopt some of your measures - mindful of what I eat, and nothing after 7 pm. When all this started, I was losing weight like crazy and could not stomach anything. Now I am developing the opposite problem.
Good luck with the Pomalyst.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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