So, since I started treatment – cyclophosphamide, Velcade, and dexamethasone (CyBorD) initially, and Revlimid, Velcade, and dexamethasone (RVD) currently – my taste buds are toast. From other posts I read here in the forum, this seems common.
My question: Does marijuana help?
I can no longer eat a hamburger cause the meat tastes rancid. Other foods vary. Unfortunately , pancakes, baked goods, chocolate, soft center pies are good!!
Live well.
Forums
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Rick++ - Name: Rick
- Who do you know with myeloma?: me
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 69
Re: Can marijuana be used to improve appetite?
I had the same challenges you are having now four years ago during my induction therapy using Velcade and dexamethasone. After losing about 30 lbs (14 kg), it was suggested to me by friends to look into just marijuana to improve appetite. I believe marijuana is oversold quite a bit for its medical health benefits, but over the years I have read about some health benefits that do seem to be vetted and I keep an open mind about it. I have a job that requires a security clearance and I get regular drug tests too, so even though I am in California where medical marijuana is legal, I cannot take any drugs that I do not have a FDA approved prescription for.
Then someone told about the drugs Marinol (dronabinol) which is synthetic THC approved for use by the FDA. I had never heard of that before and had no idea there was an FDA approved THC drug. I brought it up with my GP doctor and he thought it was worth trying and gave me a prescription. I picked up the drug 30 minutes later down the hall at my HMO pharmacy.
Not ever having tried marijuana before, I was wondering what my first dose was going to be like. It was a non event. As far as I could tell, I felt no difference or change, but my GF said I seemed to be more relaxed. As far as helping my appetite, it did not seem to do much that I could tell. But also by this time I was taking a fair amount of morphine and Dilaudid (hydromorphone) and had become completely adapted to taking those drugs without feeling any effect anymore.
I wish I had better news for you than that. After a little over a month using Marinol, I stopped as it was not helping and I wanted to reduce the many drugs I was on at the time down to what was clearly providing some benefit. Marinol must work for some people, as it would not have been approved by the FDA. My understanding is it primarily given to AIDS patients, but cancer patients as well. If you face any complications with using medical marijuana, I suggested trying Marinol and if not then you have the option of Marinol or medical marijuana. Always check with your doctor, but I do not see what it could hurt to try.
After my stem cell transplant (SCT) and being off Velcade for 5 months, my appetite came back completely and over the next two years I regained most of the about 60 lbs (27 kg) I had lost by then.
Best wishes
Eric
Then someone told about the drugs Marinol (dronabinol) which is synthetic THC approved for use by the FDA. I had never heard of that before and had no idea there was an FDA approved THC drug. I brought it up with my GP doctor and he thought it was worth trying and gave me a prescription. I picked up the drug 30 minutes later down the hall at my HMO pharmacy.
Not ever having tried marijuana before, I was wondering what my first dose was going to be like. It was a non event. As far as I could tell, I felt no difference or change, but my GF said I seemed to be more relaxed. As far as helping my appetite, it did not seem to do much that I could tell. But also by this time I was taking a fair amount of morphine and Dilaudid (hydromorphone) and had become completely adapted to taking those drugs without feeling any effect anymore.
I wish I had better news for you than that. After a little over a month using Marinol, I stopped as it was not helping and I wanted to reduce the many drugs I was on at the time down to what was clearly providing some benefit. Marinol must work for some people, as it would not have been approved by the FDA. My understanding is it primarily given to AIDS patients, but cancer patients as well. If you face any complications with using medical marijuana, I suggested trying Marinol and if not then you have the option of Marinol or medical marijuana. Always check with your doctor, but I do not see what it could hurt to try.
After my stem cell transplant (SCT) and being off Velcade for 5 months, my appetite came back completely and over the next two years I regained most of the about 60 lbs (27 kg) I had lost by then.
Best wishes
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Can marijuana be used to improve appetite?
Hi Rick++
I had almost exactly the same experience as you. When I started treatment, food started tasting funny and the only thing that tasted good were sweets. I lost about 30 pounds over two months. But the problem somehow resolved itself, and now my appetite is good and food tastes the way it used to.
I never tried marijuana and have no idea if it would help. Just wanted to let you know that the funny tastes can go away. I would guess it may have something to do with the drugs used for treatment and that, at least in my case, the problem was temporary. The only thing that has persisted is my craving for sweets, but I understand such cravings can be a result of taking steroids. I am also on dex (as well as prednisone).
I hope your taste buds recover quickly, and wish you the best of luck with your treatment!
I had almost exactly the same experience as you. When I started treatment, food started tasting funny and the only thing that tasted good were sweets. I lost about 30 pounds over two months. But the problem somehow resolved itself, and now my appetite is good and food tastes the way it used to.
I never tried marijuana and have no idea if it would help. Just wanted to let you know that the funny tastes can go away. I would guess it may have something to do with the drugs used for treatment and that, at least in my case, the problem was temporary. The only thing that has persisted is my craving for sweets, but I understand such cravings can be a result of taking steroids. I am also on dex (as well as prednisone).
I hope your taste buds recover quickly, and wish you the best of luck with your treatment!
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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: Can marijuana be used to improve appetite?
After my transplant in October of 2012, I had trouble with this too. I was getting frozen dinners to make it easy on myself about cooking. At the market, I would look at the pictures on the boxes and see if my brain could send a message of "that looks good". Same thing when it came out of my freezer – the appetite was happier seeing a picture than just thinking about it.. It is like having to wake up a very groggy appetite center. Have lots of liquid so you aren't chewing sawdust. Hope it helps.
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jammon49
Re: Can marijuana be used to improve appetite?
Jammon,
I have had the same experience you had, which is kind of odd and different compared to my loss of appetite from all my previous illness during my life.
Usually when I am sick and not feeling well or hungry, the site and smell of food makes me nauseated. Not so much with Velcade. Food looks and even smells pretty good. I buy something thinking this is going to be really good, then take three bites and realize it is going to be a struggle to finish it. Tastes awful and suddenly the appetite goes away, my stomach feels full already, and I get a little nauseous.
Since smell and taste are so closely tied together, how is it food can smell good yet taste so bad when on Velcade? Really strange.
I have had the same experience you had, which is kind of odd and different compared to my loss of appetite from all my previous illness during my life.
Usually when I am sick and not feeling well or hungry, the site and smell of food makes me nauseated. Not so much with Velcade. Food looks and even smells pretty good. I buy something thinking this is going to be really good, then take three bites and realize it is going to be a struggle to finish it. Tastes awful and suddenly the appetite goes away, my stomach feels full already, and I get a little nauseous.
Since smell and taste are so closely tied together, how is it food can smell good yet taste so bad when on Velcade? Really strange.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Can marijuana be used to improve appetite?
Rick if you are planing on having a SCT you may want to check with your Dr. I was just seen about getting treatment and was told I would need to get 2 drug tests done before transplant and if either came back positive for illegal drugs I would be kicked of the list. Not sure if this is the case with all cancer centers but you may want to check first.
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Blair - Name: Blair
- Who do you know with myeloma?: ?
- When were you/they diagnosed?: 1996
- Age at diagnosis: 36
Re: Can marijuana be used to improve appetite?
Blair, Are you a twenty year survivor of myeloma?? If so, and if you have not yet described your circumstances in this forum, could you do so?
Re: Can marijuana be used to improve appetite?
Blair makes a good point. I could also see where recreational drug use and the potential complications that come from that would be a reason some SCT centers would kick you off the list. You could be in the hospital for weeks or more with a compromised immune system, C-Diff and all kinds of other complications. Can you imagine a doctor also having to deal with a patient potentially going through sever withdrawal symptoms from their recreational drug use? And I have no doubt many of the severely addicted will try to have their friends and family brings drugs into the hospital for them or beg the staff for them. Imagine walking checking on your patient and finding they are wired up on crystal meth, PCP or cocaine? Or maybe just drunk? What happens if this on top of everything else causes the patient to die? Potential malpractice law suits? I have heard a fair number of stories from medical professionals of people who did not realize they had an alcohol problem until they were admitted for lengthy hospital stays and denied access to it. To the best of my knowledge I was not drug tested before my SCT but I know they ran a lot of labs and I could have been tested and not have known it.
I have read that many clinical trials will exclude you if have ever had what are considered “alternative therapies” or are considering using alternative therapies while on the trail. For that matter they often exclude people who have already had some lines of “conventional therapies” or medicine. They often want to eliminate unknown variables and have as homogenous population in the trail as the can reasonable get so they are comparing apples to apples. I can see where recreational drug use would be something that they would not want in trail participants because of the potential to affect results.
I would also be very interested in the experience of a 20 year myeloma survivor. 
I have read that many clinical trials will exclude you if have ever had what are considered “alternative therapies” or are considering using alternative therapies while on the trail. For that matter they often exclude people who have already had some lines of “conventional therapies” or medicine. They often want to eliminate unknown variables and have as homogenous population in the trail as the can reasonable get so they are comparing apples to apples. I can see where recreational drug use would be something that they would not want in trail participants because of the potential to affect results.
I would also be very interested in the experience of a 20 year myeloma survivor.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Can marijuana be used to improve appetite?
I used medical marijuana during induction to help deal with the sleeplessness brought on by the dex, which worked well. I was upfront about this with my doctors, and they seemed fine with it (or at least they never said anything against it). I was also upfront about my habit of enjoying an evening cocktail or glass of wine on a more or less daily basis and they had no problem with that. When it came time for my stem cell transplant, I did receive a notice from my insurance company that there was to be no alcohol or marijuana use during the transplant and the recovery from it. Of course, I was fine with that. There was never any talk about drug testing or anything like that, though, and never any talk of this compromising my stem cell transplant in any manner. While I am sure that there would be issues with someone who was hooked on heroin or meth or something like that, I think the marijuana issue is a very different thing. Of course, I'm here in California and attitudes towards its use by doctors in other areas may differ. You'd want to make sure your doctors were at least ok with it.
As an aside, I agree with others who have said that the medical benefits of cannabis have been way oversold. I do think, though, that appetite enhancement by its use is pretty well proven. It's covered to some degree in this review: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2241751/ (scroll down to section III for the relevant info as well as references to other articles on this).
As an aside, I agree with others who have said that the medical benefits of cannabis have been way oversold. I do think, though, that appetite enhancement by its use is pretty well proven. It's covered to some degree in this review: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2241751/ (scroll down to section III for the relevant info as well as references to other articles on this).
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Can marijuana be used to improve appetite?
mrozdav,
They found I had MGUS in 1996 but it was not until 8-31-15 that I was diagnosed with multiple myeloma here in Pensacola, FL, and I just recently went to Vanderbilt Ingram Cancer Center in Nashville where I just moved from in February for my 2nd opinion, staging and treatment plan.
I received a call today from my doctor in Nashville and have been approved for transplant. According to DSS I am stage III and with ISS I'm between stage II and III. I go to see my oncologist here in Pensacola on the 23rd about starting chemo (I was told 4-6 cycles). Because I have neuropathy they are going to try to get me approved for carfilzomib but while I wait for approval she wants me to start Revlimid and Decadron and possibly Velcade.
I know it must sound like I'm a total idiot for not knowing I had multiple myeloma sooner but it wasn't for a lack of trying to find out what was going on with me because I was going to doctors 3-4 times a month for various things and I told each of them of the problems I was having like extreme fatigue, feeling like something was gnawing on my bones, shortness of breath, weak muscle strength and more but was always told it was part of my neuropathy.
Good luck to everyone!
They found I had MGUS in 1996 but it was not until 8-31-15 that I was diagnosed with multiple myeloma here in Pensacola, FL, and I just recently went to Vanderbilt Ingram Cancer Center in Nashville where I just moved from in February for my 2nd opinion, staging and treatment plan.
I received a call today from my doctor in Nashville and have been approved for transplant. According to DSS I am stage III and with ISS I'm between stage II and III. I go to see my oncologist here in Pensacola on the 23rd about starting chemo (I was told 4-6 cycles). Because I have neuropathy they are going to try to get me approved for carfilzomib but while I wait for approval she wants me to start Revlimid and Decadron and possibly Velcade.
I know it must sound like I'm a total idiot for not knowing I had multiple myeloma sooner but it wasn't for a lack of trying to find out what was going on with me because I was going to doctors 3-4 times a month for various things and I told each of them of the problems I was having like extreme fatigue, feeling like something was gnawing on my bones, shortness of breath, weak muscle strength and more but was always told it was part of my neuropathy.
Good luck to everyone!
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Blair - Name: Blair
- Who do you know with myeloma?: ?
- When were you/they diagnosed?: 1996
- Age at diagnosis: 36
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