› Forums › General Melanoma Community › Muscle wasting, weight loss, yervoy & steroids
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marysan.
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- September 3, 2011 at 3:07 pm
My husband, Ron, has been struggling with weight loss, but more frighteningly, muscle loss. I've posted about this on the board before, when he was having such a bad time with diarrhea from the 2 Yervoy treatments (Yervoy treatment halted).
My husband, Ron, has been struggling with weight loss, but more frighteningly, muscle loss. I've posted about this on the board before, when he was having such a bad time with diarrhea from the 2 Yervoy treatments (Yervoy treatment halted).
I've researched (Googled, more accurately) and found that the particular steroid he was prescribed, Dexamethasone (a flourinated steroid) is well-known for causing muscle wasting. That, while all steroids can cause muscle loss, this drug is the worst of the lot. Switching from a flourinated form to a non-flourinated steroid (such as Prednisone) could help slow this muscle wasting . Gee, I wish I'd known that when he was first prescribed a month ago! We asked if he could be switched, but now that Ron is slowly (frustratingly slow) tapering off, the doctor doesn't want to switch to a different steroid.
Yervoy can cause weight loss. Cancer can cause muscle wasting and weight loss. We really didn't need anything else to contribute to the muscle wasting aspect!
I have started giving Ron more protein. I make sure every meal contains good quality protein. We're eating lots of fish (wild caught, good oils) and some pastured poultry/meat. I'm making him protein shakes twice a day, with MCT oil, BCAA powder, Fish Oil, probiotics added. We try for around 100 g of protein per day. This is on top of lots of berries, vegetables, some whole grains, wheat grass juice, and supplements. It is hard to give him enough calories on a healthy diet, but, believe me, I'm packing them in there! According to the Life Over Cancer book, by Dr. Block, he should be consuming around 2600 calories to help counteract the weight loss.
I had a hunch that Psyllium might help his diarrhea. He has 2 servings a day, mixed with water. This bulked up the stool, which had been watery. Now the stool is normal.
He has stopped dropping weight! He has put on a few pounds.
He's still on the Dexamethasone, much to my irritation.
Although he still has a weak voice, and a bad limp because of Drop Foot/neuropathy, we are hopeful that he can at some point resume the Yervoy therapy.
CJ
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- September 3, 2011 at 5:56 pm
Great hint for anyone on Yervoy – wish we had a helpful hints catagory that was sorted by treatment! 🙂
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- September 4, 2011 at 12:49 am
Hi CJ,
What kind of supplements is your husband taking? I'm on Yervoy myself and was told not to take any supplements as they didn't know how they interacted with the drug. I've been taking 2000 IUs of Vitamin D, but that's it. I wish I could drink my greens drinks, but it's got about 10 herbs in it. Was your husbands oncologist more open with him taking supplements, etc?
Sorry to hear your husband has been having problems on Yervoy. Protein is a great idea since it helps alot with muscle mass.
Hoping for all the best,
Lisa
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- September 4, 2011 at 10:58 am
He has a multivitamin,vit D, maitake mushroom extract, several essential fats, B12, vitamin C, digestive enzymes, probiotics, CoQ10, psyllium. He has continued to take his Saw Palmetto and Pygeum, (he's taken these last 2 for a few years to reduce nighttime prostate symptoms). I don't know about the effectiveness of the previous 2, but he says he wants to keep taking them.
When we go to the doctor's, we list them on the form. We haven't been told not to take them. I don't give him supplements for a couple days before or after infusion.
There is a book called Beating Cancer with Nutrition, which I got on the big "book" website, along with Life Over Cancer, and Anti-Cancer A New Way of Life. They are all very good in explaining nutrition and alternative complementary therapies. All of the books support using conventional cancer treatment.
I have to admit that I am pretty geeky in the nutrition/alternative health area, having bookshelves full devoted to health and nutrition. It is just a personal thing. We've always been supplement users. If the doctor had suggested Ron stop taking something, we would have.
At the last visit, I asked about protein shakes and also the addition of amino acids, and met with no resistance. I also asked if adding psyllium might help, and he thought it was worth a try (It is helping).
I agree that taking supplements while on Yervoy is something to really be cautious about. Be careful. Talk to your doctor.
Ron is off of Yervoy treatment for the time being, and rebuilding muscle mass is critical right now.
According to the National Cancer Institute, 20% to 40% of cancer patients die from causes related to malnutrition, not from the cancer itself.
CJ
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- September 4, 2011 at 10:58 am
He has a multivitamin,vit D, maitake mushroom extract, several essential fats, B12, vitamin C, digestive enzymes, probiotics, CoQ10, psyllium. He has continued to take his Saw Palmetto and Pygeum, (he's taken these last 2 for a few years to reduce nighttime prostate symptoms). I don't know about the effectiveness of the previous 2, but he says he wants to keep taking them.
When we go to the doctor's, we list them on the form. We haven't been told not to take them. I don't give him supplements for a couple days before or after infusion.
There is a book called Beating Cancer with Nutrition, which I got on the big "book" website, along with Life Over Cancer, and Anti-Cancer A New Way of Life. They are all very good in explaining nutrition and alternative complementary therapies. All of the books support using conventional cancer treatment.
I have to admit that I am pretty geeky in the nutrition/alternative health area, having bookshelves full devoted to health and nutrition. It is just a personal thing. We've always been supplement users. If the doctor had suggested Ron stop taking something, we would have.
At the last visit, I asked about protein shakes and also the addition of amino acids, and met with no resistance. I also asked if adding psyllium might help, and he thought it was worth a try (It is helping).
I agree that taking supplements while on Yervoy is something to really be cautious about. Be careful. Talk to your doctor.
Ron is off of Yervoy treatment for the time being, and rebuilding muscle mass is critical right now.
According to the National Cancer Institute, 20% to 40% of cancer patients die from causes related to malnutrition, not from the cancer itself.
CJ
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- September 4, 2011 at 12:49 am
Hi CJ,
What kind of supplements is your husband taking? I'm on Yervoy myself and was told not to take any supplements as they didn't know how they interacted with the drug. I've been taking 2000 IUs of Vitamin D, but that's it. I wish I could drink my greens drinks, but it's got about 10 herbs in it. Was your husbands oncologist more open with him taking supplements, etc?
Sorry to hear your husband has been having problems on Yervoy. Protein is a great idea since it helps alot with muscle mass.
Hoping for all the best,
Lisa
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- September 4, 2011 at 6:27 pm
Hi CJ,
I had 4 infusions of Yervoy in 08. I responded to the drug but since my reved up immune system attacked my pituitary gland I've been on steroids (Hydrocortisone) ever since.
If Ron hasn't had one I'd recommend he get a bone density scan. Steroids also contribute to bone loss. Almost a year ago my primary doctor did a scan on me. In the spine I am borderline for osteoporosis (age 54). I've been taking liquid calcium: Lifetime brand. I will get a follow up scan in a month.
Sounds like you are on top of the area of supplements and nutrition. Also seems like Ron has a wonderful caregiver.
Best of success and God Bless,
Jim M.
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- September 4, 2011 at 6:27 pm
Hi CJ,
I had 4 infusions of Yervoy in 08. I responded to the drug but since my reved up immune system attacked my pituitary gland I've been on steroids (Hydrocortisone) ever since.
If Ron hasn't had one I'd recommend he get a bone density scan. Steroids also contribute to bone loss. Almost a year ago my primary doctor did a scan on me. In the spine I am borderline for osteoporosis (age 54). I've been taking liquid calcium: Lifetime brand. I will get a follow up scan in a month.
Sounds like you are on top of the area of supplements and nutrition. Also seems like Ron has a wonderful caregiver.
Best of success and God Bless,
Jim M.
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- September 4, 2011 at 11:00 pm
Jim,
Thanks for the kind words.
I will remember to have Ron ask his primary doc for a bone density scan. My sister suffered from Myasthenia Gravis and Lupus and was on steroids for years. She would get stress fractures….those steroids are tough.
Be sure and take calcium with vitamin d, magnesium and zinc for maximum absorbtion.
Did your pituitary trouble happen in the middle of the 4 treatments, or sometime after? How did they identify the problem?
CJ
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- September 5, 2011 at 9:02 pm
Hi Cj,
I do take calcium with magnesium and vitamin D. The zinc is in my multi vitamin which I take in the a.m.
I started to get major headaches 2 weeks before I was to get my 5th infusion of Yervoy. Tylenol or nothing else helped much and the pain encompassed the whole head. After a couple weeks of this an MRI revealed the pituitary gland was swollen. That's how they identified it. Steroids brought the swelling down and the pituitary went to it's original size. Through blood work it was revealed that my hormone levels were low such as cortisol, TSH, free T4 and ACTH giving me adrenal insufficiency. I also had low thyroid function at that time.
God Bless,
Jim M.
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- September 5, 2011 at 9:02 pm
Hi Cj,
I do take calcium with magnesium and vitamin D. The zinc is in my multi vitamin which I take in the a.m.
I started to get major headaches 2 weeks before I was to get my 5th infusion of Yervoy. Tylenol or nothing else helped much and the pain encompassed the whole head. After a couple weeks of this an MRI revealed the pituitary gland was swollen. That's how they identified it. Steroids brought the swelling down and the pituitary went to it's original size. Through blood work it was revealed that my hormone levels were low such as cortisol, TSH, free T4 and ACTH giving me adrenal insufficiency. I also had low thyroid function at that time.
God Bless,
Jim M.
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- September 4, 2011 at 11:00 pm
Jim,
Thanks for the kind words.
I will remember to have Ron ask his primary doc for a bone density scan. My sister suffered from Myasthenia Gravis and Lupus and was on steroids for years. She would get stress fractures….those steroids are tough.
Be sure and take calcium with vitamin d, magnesium and zinc for maximum absorbtion.
Did your pituitary trouble happen in the middle of the 4 treatments, or sometime after? How did they identify the problem?
CJ
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- September 6, 2011 at 12:25 am
This past year I have lost over 50 pounds. I was taking prednisone for quite some time but I discontiued this last spring.
All the meds, the good and the bad its all difficult and its good to have someone to talk to about it. I will say a prayer for your husband in hopes he begins to recover.
Peace be with you
CKasper
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- September 6, 2011 at 12:25 am
This past year I have lost over 50 pounds. I was taking prednisone for quite some time but I discontiued this last spring.
All the meds, the good and the bad its all difficult and its good to have someone to talk to about it. I will say a prayer for your husband in hopes he begins to recover.
Peace be with you
CKasper
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- September 6, 2011 at 11:54 am
Hi CJMy mum is about to start Yervoy at the end of this month in conjunction with a vaccine made of “other peoples melanoma cells” (surgery at this time is considered too risky for mum to have a vaccine made up of her own cells).
We saw mums immunologist today, where she questioned him about natropath and other natural therapies which she has been taking (on advice of a natropath who has been very encouraging of the conventional treatment process). He said for her to stop all of these on the basis that they haven’t tested the impact of these natural therapies in conjunction with Yervoy. He said it could make it work better, nothing or worse – they just don’t know so it was better to play it safe & stay off them.
I must admit after reading your post I’m a bit worried at what my Mum is going to experience thru Yervoy! I suppose I can only take each day as it comes.
Hope your husband continues to improve,
Ash-
- September 8, 2011 at 12:19 am
No one knows what to expect with Yervoy. You just keep positive, keep praying, and hang in there.
I think it is fine to take vitamins and at the very least, eat lots of whole fresh veg and fruit and whole grain. Don't forget to keep up the protein. I didn't, at first. We are now trying to make it up, but it Might have been better had I been giving him more from the get-go.
Good wishes for your mom.
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- September 8, 2011 at 12:19 am
No one knows what to expect with Yervoy. You just keep positive, keep praying, and hang in there.
I think it is fine to take vitamins and at the very least, eat lots of whole fresh veg and fruit and whole grain. Don't forget to keep up the protein. I didn't, at first. We are now trying to make it up, but it Might have been better had I been giving him more from the get-go.
Good wishes for your mom.
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- September 6, 2011 at 11:54 am
Hi CJMy mum is about to start Yervoy at the end of this month in conjunction with a vaccine made of “other peoples melanoma cells” (surgery at this time is considered too risky for mum to have a vaccine made up of her own cells).
We saw mums immunologist today, where she questioned him about natropath and other natural therapies which she has been taking (on advice of a natropath who has been very encouraging of the conventional treatment process). He said for her to stop all of these on the basis that they haven’t tested the impact of these natural therapies in conjunction with Yervoy. He said it could make it work better, nothing or worse – they just don’t know so it was better to play it safe & stay off them.
I must admit after reading your post I’m a bit worried at what my Mum is going to experience thru Yervoy! I suppose I can only take each day as it comes.
Hope your husband continues to improve,
Ash
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