No appetite...

[pleasant1911]

My father has MDS and has a lot of weight. He was small framed and skinny to begin with, but he is thinner now. He says he just does not have any appetite to eat. He says that his tongue and taste buds are all jacked up and everything just does not taste right. The doctor told us, maybe he can wash his tongue before he eats,but i do not think my dad likes it at all. He is on vidaza and revlimid and i think that is what is making his taste buds to go nasty and no appetite. Has anybody experience this self/others lack of appetite, and would know of anything that might be helpful? Thanks

[rar]

Nystatin (prescription drug) helps clear the tongue. Washing out mouth with baking soda, salt, water solution can improve things also.

Ray

[DanL]

Trying new foods or foods that you did not have a taste for in the past sometimes helps. I developed a taste for chocolate and peanut butter, as well as mangos, all foods that I did not eat a lot of previously. Also, play around with salt content. I have had times where I need a lot of it to flavor foods, and others where I could not take the slightest bit. Sesame has also been a favorite lately.

At the very least, make sure that he is getting enough protein into his diet. Ensure and some of the muscle building drinks have good amounts of protein with relatively few sugars and at least keep a person from wasting away.

[Neil Cuadra]

pleasant1911,

Sometimes, when you're sick, eating is a chore, not a pleasure, so you may need to explain to your father that he needs to eat to maintain or improve his health, like it or not. I know that sounds harsh but he might appreciate the honesty.

Meanwhile, of course, you'll want to look for ways to help him find foods he can most easily eat. Most major hospitals have nutritionists who may be able to help too.

[bailie]

I am at Day 28 post SCT. By Day 23 I had lost all sense of taste and my sense of smell had increased proportionately. It was on that Day 23 that I did a major scraping of my tongue. Immediately I started regaining my sense of taste. Now by Day 28 my taste is very close to normal. I have continued to scrape my tongue for the last five days. My tongue was previously completely covered and I'm sure the taste buds were directly affected, not internally from the chemo, but externally from the layer of "whatever".

[Paula W.]

Pleasant1911,

In January 2014 the doctors were ready to put my mom on hospice, she couldn't / wouldn't eat. No appetite at all, she was down to 98 lbs and things were moving in the wrong direction. Then finally her doctor said, "I think I'm going to try Marinol" (medical marijuana, pill form). Within 2 days, my mom started eating (munchies I guess). Everyday that went on she ate more and more, got stronger, started to walk, pressure sores started to heal, and today 9/20/14, she is still here, 112 lbs, still on the miracle pill "Marinol". It may be worth mentioning to your dads doctor. Honestly, it SAVED my moms life. I hope it's legal in your State. I'm in NJ.

Good luck!! God Bless!!

Paula

[Chirley]

I didn't read the full article, only the headlines, but apparently our Prime Minister is not against legalising medical marijuana in Australia. I think it was on the news recently where some cases have already been granted special concessions so they can treat "untreatable" epilepsy with it.

It looks like it's on it's way to becoming under consideration as a mainstream medication here. Obviously, they will have strict prescribing guidelines.

[sbk007]

Marinol is a Schedule 3 drug unlike marijuana which is classified as schedule 1 same as heroin. Marinol is a legal drug in the US and has been for at least 30 years. I wish it were sold over the counter...

[Chirley]

I think "medical marijuana" may be a very loose term for a cannabis derived oil here. Don't forget we are talking in terms of popular media such as newspaper and television reporting.

[joesmith]

Originally Posted by pleasant1911

My father has MDS and has a lot of weight. He was small framed and skinny to begin with, but he is thinner now. He says he just does not have any appetite to eat. He says that his tongue and taste buds are all jacked up and everything just does not taste right. The doctor told us, maybe he can wash his tongue before he eats,but i do not think my dad likes it at all. He is on vidaza and revlimid and i think that is what is making his taste buds to go nasty and no appetite. Has anybody experience this self/others lack of appetite, and would know of anything that might be helpful? Thanks

Hi Pleasant1911 - My mom is on her second round of Vidaza and she has the same loss of taste in her tongue and mouth. She has also completely lost her appetite to the point where she does not even want to drink water until she is forced to. She has also started loosing weight and does not like the taste of anything - food, fruits, drinks, etc. She scrapes her tongue regularly, uses the different mouthwashes suggested by her doctor, gargles her mouth with warm water, etc but in vain. Her doctor has indicated that these are the side effects of Vidaza. Unfortunately there does not seem to be a solution but to just ride it out which is very painful both for the patient and the caregiver.

[pleasant1911]

Hello everybody. That Vidaza must be power stuff, hopefully good stuff though. My father will be going in for his third cycle in the beginning of October. its tough watching love ones go through all these $#%# but i could not imagine how tough it is to actually go through it. i bought my father case of ensure, bc I think its just good for him or hope it ll do him so good???but he seem to like it...at least i seen cans missing from the case...

[shortcop]

Originally Posted by pleasant1911

My father has MDS and has a lot of weight. He was small framed and skinny to begin with, but he is thinner now. He says he just does not have any appetite to eat. He says that his tongue and taste buds are all jacked up and everything just does not taste right. The doctor told us, maybe he can wash his tongue before he eats,but i do not think my dad likes it at all. He is on vidaza and revlimid and i think that is what is making his taste buds to go nasty and no appetite. Has anybody experience this self/others lack of appetite, and would know of anything that might be helpful? Thanks

I just got off Vidaza for a few weeks now & have experience NO taste buds. I has happen to me several times while on Vidaza. after awhile they come back