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Ill from Chemo/Neupogen


mary colleen

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My husband had his final scheduled chemo treatment on Thursday, and is getting Neupogen shots about every other day for now to try to kick-start his bone marrow again.

He has completed 4 cycles of chemo; each cycle is 3 weeks long: week 1 = Cisplatin/Gemzar, week 2 = Gemzar, week 3 = no chemo.

He has stuggled with side effects since about mid-way through the 4 cycles. This last week or so, and particularly this last weekend have been especially bad - nausea, rash, slight fever, substantial SOB, really severe leg pain and weekness. In addition, he picked up a cold about three weeks ago, and has been coughing and congested since then. (I assume that the poor RBC and WBC counts have made it impossible for his body to move the cold virus out.) He has had to pretty much give up the idea of working at all. He was so weak last night that I had to help him to the bathroom.

The Onc clinic nurses are at least somewhat aware of his condition - he is seeing them frequently for his Neupogen shots. He said that the RN on Friday noticed his poor appearance and told him that "this is just how it is" at the end of several chemo rounds.

He has his first post-treatment CT scan on Thursday. I assume it will be "NED" after surgery and chemo.

I guess I'm just asking how far outside of normal range (if at all) these symptoms are. Though I do see some descriptions of people this ill from chemo, I really don't see it much. Or is it pretty normal?

I think I'm just looking for a reality check here.

Thanks!

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I'm no expert by any means, but for sure the side effects have been progressively worse for me as the treatment continues. I see he's gained back some weight and that must be a good sign.

In my case, the side effects do seem to come and go as they please -- and pretty quickly too. One day great, next day yuk.

Positive. Positive. Positive. Positive. :)

Bill

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Thanks - I normally feel pretty confident that things are ok, and I certainly work to maintain a calm demeanor around the house with him, but I get a little doubtish once in a while.

(Bill, I know that you're a writer, and I know that "doubtish" is probably not a word, but...it's what flew off of my fingers! Cringe if you must, and ignore!) :)

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Ha -- it isn't words that are important but what they say. I have a storehouse of words that mean nothing to anyone but me. :)

I'm counting on those scan results being perfect for you guys. Me? I find the "results" thing the worst part of it all, because it's the time when you lose all control and just have to sit on your butt and wait.

Bill

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By the way, Mary -- it's words like "doubtish" that made Charles Dickens the literary master that he was. One of his "funnest" (there's one) things to do was invent words, especially names. He had little time for grammar (his manuscripts were a mess) and confessed that he had no idea where to place a comma. :)

Bill

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Oh Bill you are so right about the "results" end of this disease. I do fairly good up and until I go in for my PET scan .... from that day until I go back to my oncologist for the results are the closest thing to unbearable that I can imagine. I do not normally need Ativan for anxiety but I make sure I have it on hand to get me through those few days. I do believe my family has either gone in to total denial or a pulling away from me in fear. I have tried to second guess and figure out what is going on but have finally resigned myselft to the fact that .. it is what it is .. and they will come around or they won't. Either way I have to face the disease and whatever lies ahead.

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Judy -- well you damn well shouldn't have to face it alone. Did I miss something in your post or am I right when I read that your family have backed off and left you to get on with it? I won't comment until I know.

But FYI, you're not alone with this -- nobody is.

Bill

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Bill you are correct in that I am not alone. My birthday was last Saturday and I got more phone calls and well wishes from friends and neighbors than I have ever received. But lo and behold my son once again forgot. When I was first diagnosed my daughter in law would cook and bring me some meals and then would come out and help me with the harder chores of house work. I did manage to keep my horses and my land up pretty much on my own. I did get rid of my horses before winter set in for fear that I would not be able to keep everything up and going. I only have the one son around and up until a few weeks ago he was trying to work 2 full time jobs to keep his family afloat. Like I said not sure if with the first "stable" scan they decided I was again a strong independent person or if since the 2 families combined have lost several (4) folks in the last couple of years that they just do not want the closeness that results in the pain of loss. I can't MAKE them want to call or come see me and I also will not force myself on them so for now I count on my friends and this site to keep my sanity in place. I keep a positive attitude about my condition, I have a great (but somewhat warpped) sense of humor, and I keep on keeping on.

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Judy,

You sure are not alone. Many of us have a way (I do) of giving off a vibe of being ok on our own and not needing help. Combine that with the natural tendency of youger adults to be caught up in their own day to day struggles, and the desire so many of us have to stay away from things we would rather not know about, and you can end up with kids who 'forget' to be concerned.

I'm sorry that you had to give up your horses. Hope that you are able to get some back in the future.

Anyway - happy birthday!

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Judy,

It could be that the kids are a little scared and are just avoiding the issue. Then again, you've been responding well to your treatment so maybe you're right and they figure the "danger" is over. Probably a mixture of things. Nice to hear you have a strong contingent of friends around you even if the family is a bit of a mystery at the moment.

Keep up the good work with your treatment.

Bill

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