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Mark can't eat - Doctors putting him on chemo anyway. Need input.

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

Mark's trial is starting Tuesday. Last Wednesday the doc said he had to gain weight or he'd be off the trial. He's been feeling like crap for days with constant back pain and nausea. Still he's been making an effort to eat. Thursday he had both a CT scan AND a PET scan. That is a lot of radioactive fluid to consume not to mention the hours of not being allowed to eat. Barely had food that day. Friday he had another trip to the hospital - couldn't eat again for an ultrasound. Felt nauseas after that. Barely ate again.

Today he finally broke down and had a 2mg dilaudid. Felt nauseaus all day. It's 8:00 PM and he's not eaten one thing. Taking another dilaudid now and a compazine. His life revolves around avoiding pain now. It is so depressing. Would love your comments.

Is it really safe to go on more chemo when he feels so crummy? I can't imagine him feeling better after it begins. I'm so beside myself with helplessness - there is nothing I can do it seems to help. I'm wondering if I should just find anyone to take him to tomorrow - another oncologist that doesn't have an agenda or is attached to a trial.

He finally broke down and had a dilaudid at noon. He's about to have his second. It does kick in quick but he's been nauseaus all day. His doc said he'd have to gain weight or he'd be disqualified from the upcoming trial.

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Has anyone determined where the nausea is coming from? Monica

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

No, the doctor just blew it off and said "can't wait until the trial starts!" I am getting the brush off.

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Kathryn:

How is this trial done? What treatments do people on the control arm get? Do they get the normal chemo or do they get placebo?

Ying

lynn1222
Posts: 105
Joined: Nov 2006

compazine may not be strong enough for the nausea, has mark tried zofran, i know that worked really well for me. also how about an appetite enhancer like magace? maybe a few things you could ask the oncologist.hope it helps god bless

lynn

moniquebar
Posts: 57
Joined: Jun 2006

Has Mark considered medicinal marijuana? I know that it really worked for a friend of mine who was suffering from nausea related to treatment for her breast cancer. Furthermore, not only did the marijuana curb the nausea, but it also increased her appetite. Just an idea.

Monique

CAMaura
Posts: 719
Joined: Feb 2005

Are you using a juicer? The fresh juices have never made me feel bad and could be calming for his stomach - especially with a little protein powder. Might be worth a try. Hope his pain eases.

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

Thanks to all for the feedback. You don't know how much this helps. I really feel alone in this.

I'm making a smoothy to take to him now. He's trying Zofran for the first time today - perhaps it will work better than the Compazine. On the study everyone gets the drug. Also, Mark uses marijuana to help with nausea but it is not helping now. Very discouraging. I just hope he eats something today. I'm so worried about him not making it through this trial. The disease seems to be taking over at this point. He has hope incredibly even in this moment of feeling like complete crap. Thanks again.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hey, I know I asked you this before, but have the doctors checked Mark's kidneys out? Are they functioning properly. The reason I ask is because that can cause lower back pain. You know what really helped me in so many ways, including nausea was ATIVAN. Does Mark have an Rx for ATIVAN? If so, he could take a bunch of them. It is my understanding that they leave the body quite quickly. They may also help with anxiety and maybe even with the pain. I am sorry I don't have an answer for you about the pain meds, but there is something called Fentanyl. It is a synthetic morphine patch that you just stick on your skin in the desired location. In this case, the lower back. It may not cause the nausea, but if it does, he could take the Ativan.
I don't know, just a thought. I know he is concerned about getting hooked on his pain meds, but seriously, he should not worry about that at this point in time. He just needs to deal with the pain and get it in control. Sometimes when we allow pain to get so out of hand by not taking enough meds (i.e. Tylenol), it makes it much harder to control after the fact, which it sounds like Mark is experiencing now.
At my hospital there was a "pain team". Maybe you could ask Marks docs or the hospital where he goes if he can make an appt. tomorrow or the next day with the pain management team.
Best of luck to you, I still wonder if he is experiencing back pain unrelated to the cancer?? Please, at least ask about if there is a "pain team" tomorrow.
Best wishes,
Susan

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi again,
I think you should get him on a PIC line if necessary. I cannot believe no one has suggested this as of yet. I could not eat following my liver resection due to a hematoma that formed at the incision site. It was pressing on my duodenum (part of the stomach) and I would throw up every time I ate. I was literally wasting away, so finally I went to the ER. They gave me morphine (which I love!) and they put me on IV food! Once the hematoma resolved (it had to reabsorb), I was able to eat once again and I stopped loosing weight in the meantime. If Mark does not get this eating and pain under control, it may be time to go to the ER and get him on some IV food.
I sure hope everything works out,
Susan

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

I'm not sure where Mark is with his diagnosis, prognosis, etc., but going on chemo with his pain and eating issues doesn't sound wise..
Pain can be all- encompassing; if your Dr. is ignoring or not controlling it,he needs another doctor. What stage is the trial? most are purely experimental, and their main purpose is to determine maximum dosage/toxicity..in most cases,(my opinion) we are guinea pigs.. bud

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