thebompie4
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Just FYI–we faxed all of my husbands medical records to MDA
and COULD NOT afford a flight, etc down there.We never talked to a Dr.
Last week we got a bill for $350, yes $350 for a “consult”.
We called and said we never saw anyone and why in the world
are you charging us $$$ ? (we were NOT happy!)They said that was the charge for having someone get
a chart ready.They will NOT cancel payment…we will continue to fight it.
So for the record–make sure you’re going–they
apparently charge even if you just send your records.
Ceci
Hydration is important….but they do a mighty fine job of pumping you full
of hydration WITH the chemo. It is all administered at the same time…
bags and bags of fluid and fluid for steroids and fluid for chemo and fluid
for flushing kidneys…etc.My husband has been on Gem/Cis for 8 months straight and pretty
much FLOATS out of chemo with lots of potty stops all day long, on
the way home and all night.The first round seems to be the worst mentally, at least it was for
us –since it is SUCH an “unknown”. After a round or two, we felt
like old pro’s and the hospitals/nurses/drs have this system down
to a science.best wishes…it’s a scary and hard place to be.
hoping your daughter sees really great results from this cocktail!
Dorien (and Kyle) Nielson–Kyle, my husband is the guy with the cancerI’ve shared before my husbands story. He is stage 4 (with mets to lungs
and lymph nodes and one main liver tumor). He was diagnosed in March
of this year.We want QUALITY of life as well as much QUANTITY we can get while still
having QUALITY….does that make sense?He is 44 years young with 4 kids. We figured we had nothing to loose-
either the chemo would work or it wouldn’t.We feel so lucky that chemo DID work in my husbands case. We are
8 months into Gem/Cis and have had NO NO NO bad side effects so
far….other than very tired the day or two after chemo. NO nausea,
no hair loss, nothing “bad” at all. AT ALL. I know this is not the case
with everyone, but this is our case.So for US? It was worth it…he has had 8 more GOOD GOOD GOOD
months with me and 4 kids. He has enjoyed life, worked, vacationed, etc.I would not trade that time for ANYTHING.
If it had not worked (chemo) at least we would have tried.
I think if you choose to try it and have bad results you can ALSO
choose to quit chemo, there is no right or wrong answer.You could have fabulous results and buy yourself some good years
of life. So for me, the answer would be at least give it a shot.(I KNOW IT’S NOT MY ANSWER TO GIVE THOUGH!!)
You can also choose to not do chemo–it’s a very personal decision.
For me and my house? We are glad we tried, we are glad we have
bought time, we are glad he has had WAY more great days than
bad days and we are glad he’s still here.This can (and with this cancer WILL) change at any point in time–
but there is no price I could put on having Kyle here with us
here and now.Best wishes with your decision….You will make the right one for YOU.
Dorien
I’m sorry
I have not got much great to say other than this cancer sucks!
My husband is the one with cancer and the ripple effects that it
has caused in our lives in unreal in so many ways.best wishes to you–enjoy your trip.
My husband is Stage 4 as well, and no there is no going backwards.
Sadly. I say enjoy “now” and plan for “then”.Really, what other choice do we all have?
This cancer stuff?? It’s hard hard hard.
DorienI would love an easier way to find/see if posts have been updated (not sure how)–
for example when i sign into facebook it shows me how many comments
have been added to any post i commented on and who said what.here it is often impossible to find an old post and see who said what.
Meaning there is nothing to notify “ME” that “I” have responses
to MY question and my post. Does this make sense? (I know it shows
“new activity” on posts, but this site has no way to notify me of
answers to my questions)Posts that I have asked questions on seem to get lost in the shuffle
and it is something I know is possible (again not sure how, i am 100%
NOT computer savvy) because other message boards i belong to
offer this option (or it just “is” something that updates automatically
and shows me when I sign on.)I would also LOVE the option of a personal message box here on the
board without having to thru emails.I belong to a handful of other message boards that have done this
for years—so i know it is possible and seems to be a “built in” feature
to many message boards I belong to.that is what i can think of for now.
Mark
welcome. I will say that some people have “luck” with the gem/cis
combo shrinking the tumors. My husband (who is stage 4 with mets. to
lymph nodes and lungs) has seen 66% shrinkage of his one main liver
tumor. At last PET scan his lymph nodes showed no active cancer at all
and his lungs nodules have also gotten smaller. Those are all good
things in our book with this cancer.We are thrilled with that response. his side effects have
also been MINIMAL on this chemo as well. So while we know
that it is not a cure, it is buying him time. Time is a good thing
and his quality of life has remained wonderful.For now, those are things we hold on to.~
dorienPat
i would only echo jason…my husband kyle is young (44) and has
stage 4 inoperable. he was diagnosed in March of this year.He has been healthy his entire life. He just finished his 19th infusion
(looks like he’s one ahead of andrea) and has done REMARKABLY
well. his worst side effects have been tired for the 2 days after
chemo as well.I just wanted to give you one more positive chemo story to look
at and hear…obviously the decision is your very own to make, but
please know some people respond VERY well to the gem/cis combo.
take care.
Dorienyes marion
but NOT out of state or out of network
and we already had an instate 2nd opinion.we spoke first hand with someone who traveled to MD Anderson
and with Dr visits/tests/etc….and no insurance coverage it cost them
24K out of pocket.Thanks Cathy==
we just found out the cost of an in person MD Anderson visit
(to the tune of $24000)–so that option is out for us.Unfort. cancer is sometimes a rich mans disease–we are not rich
men (ha ha) So we are sticking with where we are at for now
and hoping to make the best choices within our budget.Too bad money has to be a deciding factor for so many, but it is.
Including us.We mostly wanted a 2nd set of eyes on all of kyle’s paperwork
(Which he has from scans–done 2 days ago) to bloodwork –done
last week)Jason
thanks so much for your very detailed answer.
It would be very fun to sit down with you and pick your brain
about this cancer. We both admire your knowledge and research.Kyle says while he has had good response it appears that the
“uptake” during his PET scans is still significant–which is why
(I think) they want to feed that sucker (the tumor) with some
RE.Our 3 drs (we consulted 3 locally) said that they DO want a tumor
that has active blood flow for this so it will use that flow to work
with the RE.Who knows— Good luck in Houston. We are thinking of maybe
trying to make a trip there–but trying to work out logistics and such.My husband said he would love to hear about your experience
there. We are wondering if it IS worth the trip for us as well!We appreciate your responses always!
Dorien (and Kyle)
my husband gets pain in his liver as well after chemo treatments sometimes.
Quite strong pain.
I always find it odd that drs say the liver has NO feeling and no nerve
endings, yet i hear over and over that people with this cancer can FEEL
it/and pain in their livers.Jason
I just copied and pasted your info to my husband in an email–
i’m curious HOW they now the cancer cells are dead as opposed to living?
We are scheduled to start a RE treatment and it seems like its not a good
think if the liver tumor is mostly dead (it has shrunk by 66% and that is
a GOOD thing).I hate being at the hands of drs who know so much and i feel like we
know SO LITTLE….sometimes it’s very frustrating.my husbands life is, quite literally, in their hands. ugh.
No one has said a word to us about dead v living cancer in his liver.
