Hi again,
John's weight loss has plummeted because of his lost appetite. I am constantly nagging, cajoling, and generally a pain in his side about eating enough. Lately he is having so many problems swallowing he just isn't interested in eating much. We have recently considered medical marijuana to boost his hunger - our MO says it has helped other patients and to give it a try. Not being one that "used" back in the day, John is reluctant to say the least. Adding the MM to baked goods was our MO's suggestion - not inhaling!
Anyone else had any success with this for weight gain and slight pain??

If I had to do it over again I would use MM.

MM worked GREAT for me in the past, present and probably future... Let me get off the Oxycodone much faster. Since you are "not experienced", remember that baked pot takes far longer to work than smoking or vaporizing. The number one mistake in new cannabis eaters is to think it's not working, and eat more. Just be patient and it works.
You are lucky you have a doctor who actually knows something about THC instead of just DEA Reefer Madness nonsense.
(Two nights ago, Lifetime had a funny show about Roseanne Barr and MM) PS. Marinol pills do NOT work
Keep the Faith
Charm

Yes, Alex tried it. there are a batch of muffins still in the freezer. In our case we couldn't find a medium that Alex could actually eat as he continues to be unable to manage solids to any great extent. The side effect I hated was the loss of motivation which just made his lack of energy and fatigue worse. And the paranoia that came after was no picnic either. These effects only bothered me though, not Alex.

Weight loss was so severe with Alex, he lost some of his muscle as well as all of his fat and it is the loss of muscle which has added to his fatigue, energy and strength issues and is hardest to get back. This continues to be the ongoing battle 12 months out from treatment. He is on a regular diet of Ensure Plus liquid feeds which takes pressure off actually eating so that anything solid taken on board becomes a celebration rather than a battle.

I eventually gave up on the oncologists who were uninterested in his swallowing difficulties and who thought instructions to "try harder" were legitimate. They seemed unable to grasp the concept that fear of choking, no appetite, taste disturbances and nausea after 3 mouthfuls made "try harder" an ignorant and offensive remark. I ended up writing them a letter to try to explain how their solution was unhelpful, and worse, destructive as it made Alex feel like a failure.

So I took Alex to a friend of mine (Infectious Diseases physician who works with HIV patients) who was prepared to trial anabolic steroids in small doses. This required fortnightly visits into the city for injections into the butt which were quite painful. Alex persists with these injections and whilst his weight gain has been modest, it has certainly done a lot for his general feeling of wellness. The injections were good for approximately 2 kilos (4.4 pounds) which he lost as soon as he went off the injections due to a supply problem. As soon as he went back on the injections he regained the 2 kilos. This is not a treatment that I would recommend for the faint-hearted however, as a non-endocrinologist could well reject this option out of hand. I have experience with this type of treatment and was unfazed when the oncologist tore strips off me for even suggesting such a thing. I was also in a position to cite the research to shut him up and have the backing and reassurance from my friend.

The other thing we tried was small doses of antidepressants which also helped. Alex is now on full dose antidepressants for depression and whilst he continues to be underweight, he is now looking at my plate with genuine envy which is a good thing because it suggests his appetite is back, although his ability to chew and swallow is still a work in progress. I now feel slightly guilty eating in front of him but also know if he participates in mealtimes, even one mouthful is a step forward. Alex worries about the cost of his uneaten meals whilst we are out and sometimes chooses the cheapest on the menu instead of the most appropriate thing. I keep an eye on this and redirect if I think there is something else that is either easier to eat or higher in calorie value. Unfortunately, after agreeing that this thing would be easier and better than that thing, he orders the thing we agreed was not the best thing. grrr

One thing I would ask you to consider would be your own behaviour. Like you, I tried everything to get Alex to eat. Suggestions and discussions about what he could eat or might feel like, threats of deteriorating health, comments like you need to push through this, I know it's difficult but just one more mouthful etc etc. I eventually stopped because it made no difference but caused tension as soon as the food came out (my meal not his). It got to the point that Alex would get irritable and combatative before I opened my mouth. I now make no comment when he refuses but if he eats anything I ask him how it was, what was good about it, what might be better in the future etc and support even the one mouthful he might have had. Now when he leaves whatever is in front of him after telling me what was good and what was not working, it is a lot less stressful because he has no fear I am going to harangue him for only eating one or two mouthfuls. Yesterday it was fruit toast. As soon as he ordered it I thought "you have got to be kidding!" but kept my "lets have a nice cup of coffee" face on and sure enough after 2 mouthfuls he gave up saying it was too dry, crumbled in his mouth and he couldn't get all the bits in one place to swallow easily. Ah well maybe the banana bread with lots of butter would have been more moist, and clumped together better to make it easier to swallow.

I know I haven't exactly answered your question but hope my story will help you to consider your options.

Karen

Hi Bonnie!

Yes I have used MM to motivate me to eat at it worked VERY well there. Remember that there are different types of MJ, each going to effect the patient differently.

The stuff I ended up using (Cush & Buhda Wreck) was great for neuropathy, sleep aid and clearing out my cabinets of edible junk food. I also wrote some pretty funny and creative Radio commercials, it tended to bring out my creative side and my libido Great sex on that stuff by the way, if I do say so myself.

There are side effects for anything of course. I did find myself getting paranoid after consistent use, I also didn't feel I was as mentally sharp when not using it and I was a bit sluggish. Now sluggish for me was still working mad hours, just when I did get home I didn't feel up to anything. When I stopped and began dealing with the issues I was using it for in different ways, my level of activity went up.

Now Charm did point something important out. Using it in baked goods does take longer for it to take effect, where vaporizing it will kick it in VERY quickly. Never smoke it but using a vaporizor will allow you to inhale it, quicker delivery system, without all the junk. Kind of like the e-cigs. First time I used it in baked goods I did consume WAY too much...gave me new meaning to the word baked. My lord.

Anyway, I'm an advocate of MM even though I no longer use it. It worked for me and helped me kick the opiates and was able to help get me to where I am now.

Hope that helps

Eric

Ditto on the Marinol. My MO prescribed it and the way he talked I thought it was going to be just like smoking a joint only legal. W-R-O-N-G didn't feel one thing from those $20 a pill ripoff's.

Thanks everyone. Yes, John did have some marinol awhile back, tried it for a couple weeks, and it was worthless, albeit costly! So now we're considering MJ. Didn't know about the vaporizing - thanks for suggesting that Charm. So much to learn.
EricS, you are a hoot -- the libido boost would be well appreciated here!
Karen, I commend you for getting Alex out to restaurants. John simply refuses to go out anymore. (so basically the social life stinks.) Can't say I blame him much, he chokes with every bite and it's not etiquette friendly for public.
I make him alot of poached eggs, biscuits & mashed potatoes w/ gravy and cream of wheat.
I suggested the other day would he be able to get back to the speech therapy exercises he learned earlier, which were working on improving his swallow muscles. Yes, probably, he said. But lately due to the crappy chemo regimen and general frustration with it all that hasn't happened. Is it worth it??!? This entire experience is HELL. I just want to scream at his RO for doing this to is throat, and I'm afraid he's headed back for another PEG tube.
Meanwhile we are dealing with an incurable prognosis.
Sorry for venting -

Frustrated and worried -

Bonnie,

Vent away my dear. With an incurable prognosis I wouldn't worry about the delivery system i.e. baked goods or vaporizor, I'd just smoke the hell out of some MM.

My plan if I do get a recurrence and the prognosis isn't good is to move across the border (WA st) and fly high all the time before I bow out. Trust me getting some good stuff will loosen him up and if it has the same effect it did on me, not only will he find everything funny, clean out the cupboards, but he'll also get the engine roaring again. Couple that with some Yohimbe or the little blue pill and maybe some testosterone replacement and you've got yourself a party without the hangover in the morning. Yeehaw!

Anyway, not to get inappropriate but I really do think MM is the way to go. What's the saying? Smoke em if ya got em?

Keep your chin up Bonnie!

Eric

Hi Bonnie

Totally get that John is unwilling to go to restaurants, but if had me as his chief cook, I can guarantee he would rethink his position . The first time Alex and I went out, his first mouthful caused an explosive choke which sprayed me, the waitress and the people at the next table. So horrible for the poor bugger!! We now tuck ourselves into corners with Alex facing away from the rest of the patrons if he plans to try to eat something.

We also go with the expectation that Alex's meal is for show only and the purpose is to get out amongst people to help him feel he is still part of it all. The best places to non-eat are places that have something other than food going on. So Saturday night is at the local sports club with a TV Alex can watch whilst waiting for me to finish eating. Perfect combination really, he gets to watch his beloved football which I hate whilst I get fed. Breakfast is at a local cafe attached to the nursery (plants - Alex doesn't do kids) where he can look at the flowers and listen in on the other patrons' discussions about pests, fertilisers and watering requirements.

I had friends over for a meal recently after watching Alex handle wonton soup quite well. I had this brilliant idea of a broth fondue with wontons. This way, Alex could join in the making of the wontons, eat a couple and then faff around without actually eating anything more. Once again, the best laid plans .... first wonton and he choked. I hadn't done the mince finely enough. Luckily our friends are understanding of Alex's issues (wouldn't be our friends otherwise), ignored the entire episode and carried on as if the hacking and blowing going on in the next room was perfectly normal. When Alex finally returned full of apologies, they took it their stride and asked for another drink. Alex then became the wine waiter as well as the best wonton maker at the table. He also got to talk the most and didn't have to suffer the rather disgusting concoction that I was trying to pass off as "cooking".

Bonnie

I had just assumed that Michigan really had a medical marijuana program instead of a Potemkin village version.
Michigan MM info
There are no places for you to buy marijuana but you'd have to grow your own after somehow getting seeds or plants which are also not offered. The local Michigan papers summed it up
[quote]In other words, if grandma's cancer-related nausea is alleviated by a small dose of marijuana, she better know how to grow it herself. And she better have a grandchild who can connect her with the local pot pusher.[/quote]
In California, you could buy what he needs.
I hope you know kind souls with hippie pasts and current connections or else friends with college aged children.
It really is worth a try at this point.
Keep the Faith
Charm