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Dear SCLC Family --

I feel so guilty right now because I called the doctor against my husband's wishes because of his neurophy~ he's been in bed since Monday morning and his bowel/bladder weren't working well, and he couldn't walk with 20 steps and I was scared to stay on the same meds, doing the same thing and expecting different results.

So we went to the onc. and he wants to changeup his meds to CPT-11 because he thinks 13 treatments of taxol [given the obvious neuropthy] will lead him to a wheelchair. But he can't guarantee that it will go away either, with the CPT-11 treatments!

I feel like it's MY fault: had I just left well enough alone we might not have had to change treatment..... Just guilt guilt and more guilt!

He did get off his regimen of 6-plus a day oxicodone and opted instead for a patch that lasts for 72 hours. He did say that CPT-11 is likely to cause diahrea but didn't say much of anything else about it.

Would those of you who have experience with CPT-11 share with me some of what you believe I can expect to see in my husband??? Besides plain ole' guilt, I'm terrified of whats to come...

Thanks -


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Hi Beth,

First let me start by saying, please don't feel guilty. You've done the right thing. You've followed your heart and sought medical advice because your husband's quality of life is not where it should be, regardless of treatment.

When you act out of love, there is nothing to feel guilty about.

My husband started his treatment with CPT-11. He had I believe 3 rounds of it, and then a CT scan. That scan showed that the CPT-11 along with Cisplatin had kept my husband's cancer stable.

As far as our experiences on it, they were good. In fact, with all the various combinations he's had so far, that was the one with the least side effects. My husband related it to having a hangover for a few days following treatment. He received treatment 3 days in a row and then 21 days off. He was fairly nauseated for about 5-7 days following the treatment, but it wasn't anything that wasn't easily controlled using Emend anti-nausea and Compazine. The rest of the month he was fine. As long as he took those for nausea, his appetite remained normal, and he really didn't have many problems. In fact I remember after the second round, he came home and painted out living room. His hair did thin out, but he never lost it all. He did experience a couple of days with Diarrhea but that also came under control using Imodium AD. He was active, worked full time and still was able to function fully as normal.

During that time, he did have some problems with fatigue and sleeping a lot, but that turned out to be from the oxycotin and oxycodone. Keith started seeing a pain management doctor, who decreased his dosages of these and supplemented them with Methadone and Nuerotin, and that did the trick. He was awake and feisty in no time; and pain free.

Everyone's experiences with certain drugs varies from person to person, but I think that CPT-11 is one that is easily tolerated. It is also a newer drug and I've read a number of things that talk about it's high level of aggressiveness, effectiveness and tolerance. I would not feel guilty or bad about having your husband try this. I'm sure your doctor also only wants what is aggressive and best tolerated for your husband.

A few tips: Drink lots of fluids, take the anti-nausea drugs first thing in morning, do not wait for nausea to set in first, take it as a preventative measure (it works better that way). Listen to his body, if he's tired rest. and make sure he eats regularly even if it is just ensure or something less than ideal, as long as he is eating that is good.

I will keep you in my prayers, God Bless


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My husband never had a problem with diarrhea but we were told endless times that it could be a big problem, they even used the word explosive. We were told to have Imodium AD on hand and to use at the onset.

After Jim's treatment with the Irinotecan which was the first week of the month, he was very nauseated, even vomitted for several days, but by the 4th month we had figured out how to sleep through it until the next week. It took an entire week and the next treatment to get back into the swing of things. Drinking alot of fluids did help along with the gatorades, etc. He never completely lost his hair but it started to thin out on other parts of his body. Jim was a very hairy man, so some was ok to lose. When he moved into the second line of chemo, I noticed he lost his hair right away.

As for your guilt....I have the same guilt and as you know Jim has just passed. I feel like it's my fault he died, my fault he took the last treament, I should have stopped him. Don't feel guilty, it's a waste of precious quality time.


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Nothing that YOU do can change the outcome of what your husband is going through (my opinion). Please do not feel guilty for wanting the best treatment available for the man you love!

Hopefully the new chemo will relieve some of the side effects and he will enjoy a better quality of life. Bowel problems are NOT something to overlook as they can lead to more severe problems (been there, done that).

Prayers for strength and healing headed your way.

God Bless,


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