CPAPtalk.com

kteague wrote: ↑

Sun Aug 22, 2021 3:29 am

palerider wrote: ↑

Thu Aug 19, 2021 10:20 pm

chunkyfrog wrote: ↑

Thu Aug 19, 2021 6:53 pm

Thank you for the sweet, kind sentiment.

I'm just trying to think what kind of t-shirt would be appropriate after you beat THIS one

Maybe not so appropriate, but my 1st thought was instead of the usual "Fu@k Cancer" how about "Cancer F'd Around and Found Out"?

so much this.

kteague wrote: ↑

Sun Aug 22, 2021 3:29 am

palerider wrote: ↑

Thu Aug 19, 2021 10:20 pm

chunkyfrog wrote: ↑

Thu Aug 19, 2021 6:53 pm

Thank you for the sweet, kind sentiment.

I'm just trying to think what kind of t-shirt would be appropriate after you beat THIS one

Maybe not so appropriate, but my 1st thought was instead of the usual "Fu@k Cancer" how about "Cancer F'd Around and Found Out"?

The first t-shirt was a customized "Of course they're fake, my real ones tried to kill me" with something about "our favorite Frog" on the back.

I let them keep those bad puppies for science.
No souvenirs desired.
I feel a bit lucky.
Hodgkins is unusual in folks my age; but is much more common in children.
Because of the pediatric issue, there has been considerable effort in search of a cure.
Effort, I dare say would not have been forthcoming if all the subjects were old coots.

Well, it looks like my doctors are finally talking to each other.
My echocardiogram has been moved up to tomorrow, instead of 8/31.
I guess the surgeon wants a look BEFORE he dives in on Wednesday.
I rather expected the reschedule, but kept my mouth shut at the cardiologist's.
Didn't want to piss off the new doc; and I knew my surgeon
would step up to the plate for me.
(I love my metaphors.)

chunkyfrog wrote: ↑

Sat Aug 14, 2021 1:00 pm

Now to the pitch for advice: (please, of course.)
When my scalp gets sore, what works to make it feel better?
Same thing with mouth and throat . . .
I have been doing some research, but sometimes it's just useless ads.

Dear Froggy ~~~

...since you are asking for suggestions ~~~

I was part of a study for chemo neuropathy during my over 16 months of chemo. I took three types of chemo at very high dosages for stage IIIc. (and radiation and multiple surgeries)

I did NOT get neuropathy and watched almost all others in the control group complain of terrible neuropathy in their hands and feet. I was very young and healthy going in so I am not sure if that was the reason or if it was the l-glutamine?

Check with your doctors and see if they have heard of the Sloan Kettering L-Glutamine neuropathy study and if they think this would be appropriate for you.

I was told to take one heaping tablespoon of l-glutamine three times a day in 8 ounces of water or juice. Very quickly I realized I couldn't do it that way. So I mixed one heaping tablespoon in a shot of cranberry and just threw it back and chased it with 8 ounces of water or juice. I had ZERO neuropathy ... which was considered remarkable.

Also, remember particularly if you're having the initial "bolus dose" that chemo OFTEN constipates. Nothing could be worse because you want that chemo and dead stuff OUT OF YOU. So consider proactively taking a stool softener just to get ahead of it. Maybe as soon as you get home on your first dose. If this seems unnecessary you can always stop.

Zofran controlled my nausea pretty well but I did use a bit of ginger ... like "ginger chews". I had emergency Lorazepam which does help in a really bad nausea crisis. This was something my doctor used that I understand is a bit rare? The few times it was bad I was grateful I had it. Remember chemo is cumulative and so it gets harder as you go along.

I also had a prescription of chlorhexidine that I applied with a q-tip to any mouth sore immediately.

When my hair started coming back it couldn't seem to poke back out through the shaft and I got bumps and needed a prescription cream to keep that from getting infected. I forget now the name but will be happy to get that to you when you are at the hair growing back stage.

Also, I didn't like the advice about limiting fresh fruit and vegetables as they could have bacteria on them that my chemo destroyed immune system couldn't fight off. But I did become fanatic about washing all fresh foods and I did cut back. I used diluted peroxide as a wash because I really dislike the smell of vinegar.

Remember to drink drink drink and flush all of that out of you. Kill it and flush that stuff out of you. And always stay on your chemo schedule. My oncologist told me the chemo can only kill when the cancer cells are dividing so they really try to make sure your hitting that schedule. I saw many people who prioritized other things and just switched their days around willy nilly.

Though I was stage IIIc I took chemo with a group of 30 who were mostly stage iV. That was the hardest part. Something I never get over. I had a tragic experience and I lost my last group member over a year ago. It's something I never speak of and just writing this I realize I am holding my breath and I think my heart has stopped beating too. I do not think its wise to divide chemo groups like this. I wish I had had others less sick in my group. Though now with COVID I do not think there are the large rooms of people. IDK? for sure but it's most likely isolated and segregated today.

~~~anyway~~~
I cannot tell you how HAPPY I am to hear you caught this at such an early stage. Mine was caught by fluke and I was very healthy and didn't have a clue. I beat myself up for years for not knowing sooner and not catching it before I got such a grim diagnosis. ... but here I am! Still alive and have outlived my first five year cpap machine replacement. I hope to collect a dozen more!

Peace be with you and love surround you.

~~~grace

Thank you, grace; and congratulations on your victory.
L-glutamine--I will ask, and same about the chlorhexidine.
I have used chlorhexidine before when I had endodonty.
I have used manuka honey for mouth sores before-
-but no idea where they stand on honey during chemo.
Stool softener will be something to keep in the cabinet.
Right now, I take soluble fiber to help control the exact opposite problem.
I intend to be supportive of others in my chemo "classroom".

I have been busy with a lot of household stuff the past few weeks and so did not see this thread until tonight. Your strong, upbeat attitude will stand you in good stead as you battle this. I suspect your cancer has absolutely no idea of the kind of fight it has coming at it!

Hang in there and know that you have a huge cheering section right behind you. Best of luck on Wednesday.

I pray that God has you in his healing hands, you got this .

Indeed, He has given me the sense that we must be proactive in order to thrive.
If we relinquish this responsibility to others, we have no hope.

I just had my echocardiogram and within 3 hours, the results.
I am A-OK for surgery.
I was curious who triggered the schedule change--it was the anesthesiologist.
--fighting for my life, and I probably never met him.
I'll be sure to thank him (or her) tomorrow.

chunkyfrog wrote: ↑

Tue Aug 24, 2021 4:06 pm

I just had my echocardiogram and within 3 hours, the results.
I am A-OK for surgery.
I was curious who triggered the schedule change--it was the anesthesiologist.
--fighting for my life, and I probably never met him.
I'll be sure to thank him (or her) tomorrow.

Best of luck, my froggy friend...

ugh, two of my friends going under the knife in two days. promising outcome on the first one, so I'm hoping for great news from your procedure too!

I'm drinking lots of water to give them easy veins;
but the pathology on the node they extract could take more than a week.
Silly lab--they sent me a bill for the copay on the needle biopsy,
---but they already have my supplement info.
. . . Hoping to get paid TWICE?

chunkyfrog wrote: ↑

Wed Aug 25, 2021 4:58 am

I'm drinking lots of water to give them easy veins;
but the pathology on the node they extract could take more than a week.
Silly lab--they sent me a bill for the copay on the needle biopsy,
---but they already have my supplement info.
. . . Hoping to get paid TWICE?

Probably. The US medical system is a clusterf*ck

Well, I'm back home--with two new lines on me.
One on my neck, in a crease I can no longer deny, and the other a line
Below my right collarbone--both are wavy, and each glued shut.
I just took my first pain pill--rather not wait until I REALLY need it.

Glad you’re back home again. I hope those pills are the GOOD stuff! Take good care of yourself.