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Joined: Oct 2002
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rosie Offline OP
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Hi Karen,

Yes, we are trying to take it one day at a time. Heather is still very weak, but she is much better than last week, so she is making progress.
I think my statement about what the doctor said was misleading. He didn't say her case of cancer was the worst he had seen. He was referring to her recovery being so hard. He did go on to cite a couple cases where the patient had a rough recovery, but now is doing fine. So he was being optimistic. It was obvious, though, that he was surprised to see her in such bad shape.
Thanks again for all the encouragement.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
Joined: Dec 2002
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Dear Rosie and Heather,
Am very keen to know of your progress and have been interested in your symptoms as very simillar to mine.
I too have had nausea and vomitting from something blocking digestive tract - in retrospect I think it was a mixture of chemo(Carboplatin & 5 Fu's), constipation and poorly directed feeding tube. I have now taped my tube up towards my chest in order to point the inside section down into my stomach which worked miracles for the vomitting!(seems so obvious now). Keeping bowels moving (tough when on the morphine) seems to be a big factor with the nausea too. Hope Heather is taking more Ensure now - I'm up to 7 tins some days so have stabilized quite well.
The candida thing bothers me too - they don't know if my white tongue is due to Candida but they've given me Nystatin and Tantum mouthwashes which don't help much with foul taste. I've taken to rinsing with and sipping Aloe Vera juice/gel with ice - very refreshing if nothing else.
Am bracing self for next bout of chemo which they delayed due to severe side-effects but I shall feel better prepared this time.
Like Heather I was told that being younger would help my recovery (although I have a few years on her) but even the tube insertion was a rough ride through all my sport-fit abs!
Hope to hear good news from you,
all the best and everything is crossed for you,
Frances

Joined: Sep 2002
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Frances,
You are right about the constipation problem when one takes pain meds. We were very successful with liquid senekot. We ended up buying the generic "senna" which was just as good. Goes easily into the tube.
Meredith

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Frances... Your white tongue is very likely Candida, and should be treated, not left alone. Candida can progress into the digestive tract and become a major problem. Once there it is VERY difficult to get rid of. The drug of choice is Diflucan, and even though it is a tablet, if you are unable to swallow it, it may be crushed and put through a PEG tube which I did on the many occasions Candida turned my tongue and other parts of my mouth snow white. Please read this page in the main body of the web site http://www.oralcancerfoundation.org/dental/candida.htm


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Oct 2002
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rosie Offline OP
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Frances,

Heather's candida seems to be cleared up. She took Diflucan for 2 weeks. Besides tablets, it is also available in liquid form.
We are taking your suggestion about turning the tube upwards, because she still has occasional nausea. She switched from Ensure to Nutren and was up to 4 cans a day when our whole family was hit with a stomach virus plus Heather caught a cold. With her stomach upset, she cut back her amount of Nutren, but we are working on building it back up again.
It's really hard to keep her secluded from illness because she has a 6 year old daughter. Between kindergarten and the sitter's, she brings a lot of germs home and there is no way we can keep them totally apart. It's hard enough on Cati that her mom is sick, but it would be worse if she couldn't see her for days at a time.
Things are getting better, but we are still waiting for that rainbow!
Hope you continue to progress and good luck with your next round of chemo.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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