Day 6 after Starting new CHEMO regiment of CMV

Thanks everyone,

Well the latest is that on Wed. I called the oncologist and his primary, told them that the symptoms were not getting any better, and that I thought he was going to get dehydrated if we didn't figure something out. He suggested to take him to the emergency room. I told him that I would not have him just sitting there waiting to be seen because he could barely lay in bed at that time. My suggestion was he needed to be admitted and that they should call me when they had a room. IT WORKED!!!YEAH!!!...We got a call at about 4:00 that a room was available (always private at this hospital)and we went from the car to admitting to the room in about 10 minutes total. Now I don't know if this would work at any other hospital but I say give it a try if you know that something is really wrong.

He had a CAT Scan, x-ray, and no blockage THANK GOD!!, He did loose 15 lbs. in one week (that was scary to hear)and the pain was still unmanagable. After morphine IV, (which didn't even make him blink) They finally put him on 2mg dilaudid, and IV fluids. Zantac IV. That worked beautifully and he finally got a peaceful nights sleep (or as peaceful as you can get in a hospital), The next challenge what finding the right PO dosage (by mouth). So, after alot of trial and error he is now on 8mg of dilaudid (pill form) every 4 hours for "Break through" pain, and a Fentanyl patch every 72 hrs. He is also on a powdered laxative (you mix it with any drink) it is called Glycolax, and Zantac 150 mg by mouth 2x's a day.

He was discharged on Friday. The pharmacy didn't even carry this strength, so he has to take 4 2mg pills! He had a bit of a rough night the first night home but Sat. and Sun. have been alot better.

Chemo will resume on Thurs.

So that is my tale from the trenches this week. I think that anyone should realize that yes, you are going to be tired, that is a given...But do not accept the pain as part of the treatment, all symptoms can be "Managed". This means that the pain/nausea/vomiting/diharea/etc... probably will not go away but there is absolutely no reason to be a martyr. Get some help. On a scale of 1-10 my husbands pain was an 11. Now it is about a 4-5. Yes it still hurts, but it is not that "gripping pain". Ask for help...don't just accept whatever your side effects are to be "Normal" help is out there, you just need to ask, and sometimes demand it.

Hi Karen,

I'm sorry your husband feels so crappy. My sister also suffered terribly from heartburn and constipation and occasionally the other extreme. As well as all the other symptoms you mention. We found out eventually that the steriod IV she had was making her stomach worse and she had ulcers that needed to be cauterized. She received IV Zantac after that and it helped. What pain med is he using? Sounds like he is not getting the right one for him if it's making him hallucinate.

My sister had stage IV breast cancer, and felt that her treatments were worse than the disease, when she recurred she decided to stop chemo and let things take their course. We never did go on hospice because she stayed hooked up to various drugs that she wanted to keep, and hospice means no other tx's aside from pain meds.

It's so intense when someone we love is cramped up in pain; sure he's cranky. It must be hard for your children, though it sounds like you're doing a fantastic job of keeping life as normal as possible.

Emom mentioned senna pods/tea, I remember that stuff and it works, too! We were told not to use a fiber supplement while still blocked (after the fact...and it actually landed her in the hospital, the constipation, when all of a sudden those fiber pills kicked in, whoa). You could try to find it at a health food store. If you add a piece of ginger root to the boiling water for 10 minutes or so, this treats nausea very well (ginger root tea), and could help the senna tea taste better.

When the heartburn hits, you say none of the proton pump inhibitors are helping. What about old fashioned baking soda in water? If this continues maybe an endo is in order to see if there are ulcers in your husband's stomach, and have it treated.

Again, I'm sorry about the difficulties you're facing and wish your family well.
Wendy

Karen, I am in kind of the same boat as your husband. I have to tell you that I was kind of glad to hear about his issues because they are what I am going thru...only not as bad, I don't think. I don't have diabetes so that is not an issue for me. But let me tell you the cisplatin is hell. It wasn't too bad at first , now it is awful. I am going to start my sixth cycle on the 1st. I have the cispl/gem and then just the gemzar for two weeks after, when I can, cuz it raises heck with my blood. But the cisplatin is the killer. I know just what he means.

OMG the constipation for about three total days is the worst I have ever experienced....like trying to pass rocks! But I take metamucil for a week prior to the treatment and it seemed to helped. The stool softener and laxative didn't help much...I found the metamucil and a tea called senna leaf helped me more. At about three days after the cisplatin I go crazy and want to die too. That lasts about three or four days and then the fog lifts and I'm like...who was that person, I don't know her!!! Then the constipation turns to almost the opposite...I like how you described it...your bowels don't know what they are supposed to do!!!!The fatigue came after the third cycle and just stayed. I hate it as I am used to being very active. Unlike your hubby, I have had no nausea and have gained, not lost, weight. The steroids just make me want to eat all the time. And I think the chemo has slowed my metabolism way down.

Anyway, tell your hubby he is not crazy, he is just a victim, like me, of a disease that has a "cure" that is way worse than the disease itself...I think. I hope you get thru this. I am hoping to get thru and maybe be one of the lucky ones who has a few decent years. I am in otherwise good health and I have seven children and three grandchildren to live for and a wonderful husband who is really supportive. Mine is stage four adenocarcinoma with origin in the bladder. It is supposedly not curable and remission is rare. It has distantly spread to the lymph nodes around my lungs and they are not positive it is in the lungs.

So, here we are, in a crap shoot, not knowing from one day to the next if we'll even be able to get out of bed. But everyone also tells me that after the effects leave you (about six months)it gets better. I am hoping by the first of the year to be getting back to some semblance of where I was before. I know one thing....I will never be the same again. Normal is long gone!!! But, on the up side, I have come to grips with a lot of things and actually feel, if it weren't for the chemo, I could almost thank cancer for making me change some things to a better place than they were when I was "normal"! Take care and God bless...

Karen,
I was pleased to see you are back to let us in on your situation, but not so pleased with what you are going thru. I go back and remember your first post, only 3 months ago, now might be a good time to get your mom down there with you, just to help with the kids and give you both a break. I will keep you and your family in my prayers..Hold tight and stay strong..Take care and my best to Angelo.

Love,
Ginger

Hi Karen, I am new to this group, and as I read your posting I can relate to a lot of the things you are going through. My situation is very similar and I am sure that there are many others with the same too. My husband has been getting chemo since June (Gemzar/Cisp). Now we just started MVAC. We have an appointment for chemo tomorrow. He gets many complications with chemo, infections needs transfussions. Continuous visits and stays at the hospital and I also have a young 4 yr old child so my husband also has low tolerance do to the pain meds/pain. It is very hard. I know that sometimes is very hard to keep up with everything and everyone. Try to take care of yourself and try to get sometime for yourself. Sometimes I forget, so I have to force myself to do so. My prayers for you and your family. Aimeth

That option is so difficult to even discuss, but I've told my wife that if my cancer spreads further that we'll discuss the situation with Dr. Stein and unless the treatment has a very good chance of success, that we'll just enjoy the time we have left.

I pray that we never have to cross that bridge, and I pray that your family never sees that bridge either. One of the wonderful things about the human mind is how quickly we forget pain and suffering. When your husband's chemo is over, I think you'll be surprised how soon he regains his strength and his determination.

Zach