thebompie4
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good luck with everything Carl–that’s so interesting about the bed–my husband had a really hard time with a regular bed when he was first diagnosed as well. (his had to do with body temp fluctuations!)
enjoy your trip!! you ALL deserve a good time!
Thanks Pam– (so SO sorry and sad for your loss again and again).
Our Doctor actually doesn’t seem to put much stock in it either–some,
but not a lot–I was mostly just curious if it was “THE” indicator with this cancer.
I’m more concerned with HOW Kyle is feeling and what the cancer is
doing (shrinking, stable, growing etc).We knew after Round One of chemo the scans would give us good
news JUST by how he felt…he went from 50% of normal to feeling
about 90% of normal.We KNOW what the end will be, we have no delusions about where
this disease will take us (it doesn’t make us “faithless” just realistic in
my opinion…)But until we get there–we try to hang on by our fingernails and toenails
to all the good parts along the way.I have not got too many good words to say about this cancer, and in fact
many of them include a good deal of profanity.
i’m so sorry! most days i just want to punch this #*(#&* cancer in
the face!!!!sending love your way!
no worries, i wondered if it had anything to do with hospitals that maybe
“specialize” in the kind of cancer more–If I had any kind of computer skills I would help–or if it’s something simple, I could try….
let me know!
I also noticed that Huntsman Cancer Institute is not on your “list” of hospitals….
is that because it’s not top ranking for this kind of cancer?
just curious.
It’s a pretty top ranking cancer hospital, but possibly not for CC.
I will add my husbands info–
We are being treated by Dr Sunil Sharma at Huntsman Cancer Institute
Salt Lake City, Utah.We had a consult with Dr. Jonathan R Whisenant at Intermountain Medical
Center in SLC, UTAH as well.We liked both Dr’s, both had the exact same diagnosis and treatment options.
Not sure if anyone else has added these to your lists~
Hope that helps~Dorien
answering for my husband with his help~
Age: 44
Gender: Male
Age when diagnosed: 44
Diagnosis and Stage: ICC, Stage 4-spread to lymphs and lungs
Jaundice: no
Initial CA19.9: 77
Lymph nodes involved? yes
History of cancer? no
Resectable? no
Had surgery (with details if applicable)?
Liver transplant?
Hospital: Huntsman Cancer Institute
Oncologist: Dr Sharma
Second opinion: Yes
In remission (currently or was)?
Survived since diagnosis (years/months/weeks): So far 3 mos, 2 weeks
Chemo 1: Gem/Cis
Length (and/or number of treatments) of chemo 1: so far 5 rounds
(Two weeks on and one off)
CA19.9 trend during Chemo 1: Down, 37, then 33–just retested this week
not sure of results
Side effects Chemo 1: fatigue, some constipation
Chemo 2:
Length (and/or number of treatments) of chemo 2:
CA19.9 trend during Chemo 2:
Side effects Chemo 2:
Chemo 3:
Length (and/or number of treatments) of chemo 3:
CA19.9 trend during Chemo 3:
Side effects Chemo 3:
Advice for chemo: none, has gone really well so far.
Cyber knife?
Radiation?
CA19.9 trend during radiation:
Chemoembolization?
Radioembolization?
Experimental treatments/Clinical Trials? none so far
Any other conventional treatments? no
Blood transfusion? no
Alternative treatment? no
Use of supplements? no
Special diet? no
Complications during treatments? none so far
What worked for nausea (best)? no nausea at all
Biggest regret: wish he didn’t have cancer
Best advice given to me: Told to him by BOTH dr’s who diagnosed him:
“Kyle you will make your OWN numbers in the fight with this cancer” (after
giving survival stats….) Then telling him to forget those and be his own
number!
Best tip/idea/recommendation: Rest when tired. Listen to your wife (ok I made that one up!)
What would you have done differently? nothing so far
Current status: Alive, fighting and doing great so far!
Comments: Glad that so far things are working well and my body is responding. Told by my Dr today that I am doing “ridiculously well” with this type of cancer so far (blood work, numbers, etc). I will take that for as long as I can!why the long wait on results i am wondering? did they say?
we have usually had our results within 2 days…. i would go insane waiting
that long!so sorry for the long wait! the whole cancer thing is nerve racking enough
without making us WAIT so long to get results.
i read everyday and haven’t commented yet…but i’ve been thinking about your family and sending good vibes your way!
