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Update on Bill (Updated June 27th -- last one for this post)


teriw

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Hi everyone,

I hadn't planned on posting an update -- I was just catching up on what I'd missed this week.

Here it goes. Bill's a couple weeks into his radiation. He wasn't feeling well before it started, but adding on the effects of the radiation has really knocked him back. His chemo is suspended for the time being, because of the amount of radiation he's receiving. We'll see the chemo doc again next week and hopefully come up with a plan to start Topotecan again soon. We're both uneasy with no chemo, but the chest radiation was necessary. So, what do you do?

There's got to be some good news. Oh yeah, the good news is the radiation appears to be shrinking the primary tumor.

Biggest issue at the moment is steadily dropping weight.

But, we fight on...

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Teri,

It doesn't suprise me that Bill's dr. suspended the chemo. it's just so much for one person to handle at once. I remember thinking the same thing when Carlton was going thru his radiation treatments, but I understood the logic of the situation. You don't want so much thrown at Bill because then everything would stop, these treatments take so much energy away, even from the strongest of people. SCLC is so tricky, you've got the speed at which the cells grow, and you want to be agressive as possible with treatment, but on the other hand, you don't want too much thrown at you because then it will be a tremendous overload and then all treatment would stop.

Hang in there Teri, tell Bill I'm thinking about him and sending both of you my best.

Grace

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Teri,

Bill WILL get through this. It's difficult and sometimes you might think he can't endure another treatment, but thing's WILL get better. Getting a chemo break is a good thing. The radiation zaps those tumors faster and more efficiently than just the chemo and even though he's sicker, being off the chemo for a short time will boost his blood counts back up and he will be able to fight back. How is his eating? Is he staying hydrated? I know that was the hardest for my Bill, but those chest tumors were killed and have NOT been back. God bless and hang in there.

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Hi Teri,

The good news is that the chemo has already done a number on the primary tumor; the radiation should knock the remaining stuffing out of it. The battle now, as you know, is keeping his weight on during radiation. Good luck to both of you and please send my best regards to Bill.

Hang in there, Teri.

Trish

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Teri,

When I had radiation for breast cancer, it really knocked me down. Chemo wasn't as hard fatigue wise. And it was only to my breast, not my chest and lungs. I lost weight rapidly without even trying, to the extent that they were threatening to put me on weight gaining supplements if I lost more.

To me, that was just amazing because the previous few months before my diagnosis, I was a Weight Watcher and had just battled to lose 15 pounds and now the weight was just falling off of me.

I think that our bodies burn up a lot of calories trying to recover from the damage done by the radiation.

I ate a lot of nuts, drank milkshakes, and forced my self to eat cheese, meat, etc. so that I would not have to drink the weight gain supplements.

Now, however, I'm back to fighting the battle of the buldge.

I'm sorry for Bill's troubles, it seems to be a common reaction to radiation.

I hope he gets through it ok. I slept a lot too.

Cindy

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Hope he is feeling much better soon. My mom's doc explained that the chemo keeps working even after you stop treatment (and mom's tumor continued to shrink after she stopped) and that the radiation greatly amplifies the effect of the chemo. So even though he is not currently receiving chemo, I think his previous treatments are still fighting the beast.

Hang in there! Karen

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Glad you updated us on how Bill is doing...it is GOOD news that the primary is shrinking! Praying it completely vanishes!!!!!!

About the chemo...my mom's doc told us that the chemo keeps working even when it's stopped.

Take care of you too, ok.

Hugs to all

Libby

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We had a really good onc who took the time to explain why it was OK to jump on and off chemo. Although I personally am conditioned to automatically think of it like antibiotics (finish the whole thing over x days or else) chemo I guess isn't like that at all. SO take heart...It seems like doctors are OK with time off and jumping back on.

Besides that, I hope Bill gets done with the radiation and gains back the appetite and weight.

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Teri,

I'm glad for you both the radiation is working, but so sorry to hear how badly Bill is feeling. Radiation + the cumulative effects of chemo can really knock you down.

Try to keep bill hydrated and I am hoping some appetite enhancing meds will begin to work on his appetite.

My thoughts and prayers continue with you both.

Keep us updated and hoping for some encouraging news and a turn around soon.

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Teri,

I will continue to pray for Bill. I found that I had to eat way more than normal to maintain my weight. I had no problem eating everything in sight. If he has problems eating then get things he likes to munch on that add the most calories. I loved Almond butter with a little jelly on an English muffin. I think I could have doubled my weight in a few months.

Stay positive, :)

Ernie

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Thanks everyone.

The inability to eat much is really a tough one to solve. He has zero appetite, no energy (he says he didn't know it was possible to feel so lethargic), an upset stomach, and it has become very painful to swallow. Bill is without question the strongest person I've ever known and he has an unusually high tolerance for pain. (I think much of what he's been through lately would have sent me running to the hospital.) But he literally physically can't eat or drink something he dislikes without it making him sick. He really does try to eat. Sometimes he'll tell me he has a real taste for something, but then when faced with it on a plate, he just can't do much with it. Or what sounds good doesn't have many calories. He figures he's lost 35 pounds total since being diagnosed. I think 13 of those has been lost in the last month.

We got the Megace, Katie. Problem is it's so horrible tasting that it made him feel ill, so he's not been able to keep it up. I'm going to speak with the doctor about alternatives when we go next week. Maybe Marinol or something more fast-acting.

The radiation machine went down Friday afternoon, so he'll end up having 4 days off because of the holiday. Perhaps that's a good thing.

I thank you all for your support, as always.

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Teri,

One thing you might consider are IV's with glucose, lipids etc. We started them with my father soon after the first chemo because his apetite was so bad.

In his case megace actually worked and kept his weight stable for a while but we often asked a nurse to give him the IV. He did not mind.

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Try to at least get fluids in him so he doesn't get dehydrated. Maybe Popsicles? When he can tolerate more, try giving him Instant Breakfast between his meals- it will help with nutrients and putting weight on.

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Teri, tell the doctor's that you want the PILL form Megace. I don't understand WHY they give the liquid kind because it's so horrible. :roll::evil:

Tell Bill he has to eat or drink even if he doesn't want too. I know what it's like not feeling hungrey and they try and get some good down. It't easier said the done. He has to work at it.

Good luck and I'm adding my prayers.

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