Just FYI you CANNOT be fired from a job because you have cancer.

It is considered a "disability" and IF someone chose to fire you
for having cancer they would have a big a** lawsuit on their
hands.

They can try, but you have a disability claim against them that would
be big trouble for ANY employer that chose to fire you for having cancer.

You are protected with the ADA (Americans with Disability Act--something
like that...)

Kathy

we are in SLC as well.   My husband is Stage 4 w/mets to lungs and lymphs.
we've been fighting this since March of 2012 (so are approaching the 1 yr
mark soon)

He's responded well so far to chemo and had Y90 in November.

Last PET showed some new growth and after a 2 1//2 month break
we're headed back to chemo next week (i say "we" since cancer
is a "we" thing).

Anyway, if you want to contact us at all to talk Dr's or anything
PLEASE feel free to email me:  dorienn@excite.com

My husband is 45, we have 4 kids.  It's been an emotionally
exhausting year.

We've been to the Huntsman w/Dr Sharma and at IMC w/Dr Whisenant.
and have consulted BOTH for every single procedure and every single
step of the way on this journey.

Not sure you'll see this, but wanted to reach out from one SLC person
to another.

Dorien Nielson

3

(27 replies, posted in General Discussion)

I have to say that we DID do a lot of research on Y 90 and I have
to say that I asked for people's advice, help and personal stories
(of which we got the 2 or 3 you mentioned.)

Here, on this board.  TWICE.

I should probably leave well enough alone but OUR HUGE
frustration with this board is that we come here seeking
advice and help and opinions from people who are going through
this...

almost each and every time I post a question, hardly anyone
answers (which of course is not very helpful)

when we ask for "real life stories", almost no one ever answers.

We are almost always pointed in the direction of hard to understand
and complicated medical journals which are not helpful to "lay people"
like us.  I'm sorry that we're not as smart as some of you here on
this board.

Which is why we come looking for practical help--real answers
from real people fighting this cancer.  And mostly I feel we
get a lot of fluff and silence.  (After speaking with 4 doctors FIRST)

I truly and sincerely wish that more people, REAL PEOPLE, would
pipe in with advice, personal stories and helpful answers of
WHAT THEY EXPERIENCED.

I feel extremely frustrated that IF Y 90 is a "last resort" and
has almost all "bad outcomes" that when I asked weeks and weeks
ago, SOME ONE WOULD HAVE BEEN KIND ENOUGH OR BOLD
ENOUGH TO ANSWER MY QUESTION HONESTLY.

We come here making (LITERALLY) life and death decisions
for people we love, looking for help--and (I personally) don't
feel like I find very many answers here.

Sorry for the vent...feeling VERY (!!) frustrated that we have now
done a "bad thing, last resort thing with almost all bad
results" on my husband....

And the one place where I could have found some real life
HELP---and no one felt obligated or like helping us BEFORE hand
when we were BEGGING for some good answers to help
make this decision.

sad

4

(27 replies, posted in General Discussion)

So I'm even more curious--have people here only had BAD
outcomes/experiences with radioembolization?

have there been no good outcomes?

yikes...i wish people would have chimed in when i asked
for personal experiences BEFORE kyle had this procedure.

i guess we will continue to hope that we are a GOOD
outcome and will have a good story for board members
to hear then. smile

here's hoping!

5

(27 replies, posted in General Discussion)

Wondering why you choose radioembolization as your LAST option?

just curious...since my husband just did this.

6

(40 replies, posted in Good News / What's Working)

best wishes to you holly in the fight against this monster!

i have plenty of other names for CC-but none of them are
appropriate for this board. smile

dorien

Thank you Mary and Kris,

yes being a caregiver IS overwhelming.
and we very much look forward to a break in all of the
cancer hustle and bustle.

who knows where we will be next christmas-so we will
enjoy here and now!

a good lesson we've learned with this disease!

best wishes to all of you as well!

dorien

Well holly we know that NOTHING for Kyle is curative, sadly he has mets
in lungs and lymphs, so this is just one more stab at his liver tumor
to "buy us more time" in the words of all the drs.

they all said this is a band aid and to expect the cancer to come back.

(even when/if it kills some of it off for now)

But we will be happy to take a chemo break over the holidays and enjoy
some "no visits to chemo" for a month!

I am off to read your posts and see your experience! smile

Just a quick update...

Kyle had Y 90 on Tuesday morning.  Drs said it all went well.

We are now 4 days out and Kyle has felt
really really good.  A little tired, a little pain that comes and goes
in his liver (he says he can feel right where they targeted the Y90)

So far (knock on wood) no bad side effects.  He has been
resting and taking it pretty easy, but also cleaned bathrooms
today and ran Saturday errands with me.

Obviously no results will be known for weeks/months to come.

We meet with Drs on Weds to discuss how long he stays
off chemo.  We have had 4 drs give us a split opinion on this.

2 say stay off a few months and take a rest.
2 say continue right back on to chemo.

We will most likely take a break through the new year
regardless unless they "force" him back on (although I am
pretty sure they ball is in our court!)

Anyway, thought I would share that (thus far) his side
effects from Y90 have been minimal.

Thanks Jason...

and everyone!

We will (well I will) keep you posted!

Kyle reads, I type! smile

Thank you all!

Thanks Kris  smile

Good to hear--- i especially liked your update on the Y 90 as my
husband is undergoing this on Tuesday of this week!

Good to hear about good results.

He had his mapping two weeks ago and all went well there.

Thanks for sharing this information!

dorien

Thank you Pam and Patti for chiming in! 

It's great to hear "real life" stories about this!

We appreciate it a lot.

He had his "mapping" done two weeks ago--
where they go in first to check everything out--

(same groin spot that they will enter again on Tuesday)

It was a little sore and pretty bruised--so we will see how
the repeat entry effects it this time.

We are hoping he falls within the "norm" of reactions--

pressing onward! smile

Dorien

Thanks Lainy!  Sadly, or gladly, I have learned way more
about cancer than I ever wanted to in my life!  smile

But we will keep on keeping on!  That's all we can do. smile

Kyle was diagnosed in March of this year.

He has Stage 4 CC, one main liver tumor...mets to 2 regional lymph
nodes and tiny ones in right lobe of liver.

After 8 months of Gem/Cis (to which he has responded very well, overall
about 66% shrinkage to liver tumor, lymph nodes don't show any uptake
in PET scan and lungs have remained basically the same) and
after mtg with 3 diff Drs here, they/we all decided this was the next
best step to take.

As a plan of attack on his main liver tumor.  He will receive
one dose of Y 90 on his tumor (since he doesn't have any other
tumors--often this is a 2 step procedure)

I emailed Willow about her sister and Y 90, but am curious to hear
any other personal experiences with it.  (I am NOT looking for
medical stats/jargon/or medical journal articles--we have read
all of that)--- we are mostly just curious if anyone here (or a loved
one)  has had it and how they felt afterwards as far as symptoms,
sick, tired, etc.

If anyone has any experience, we would love to hear it from
a first (or second hand) account!

Kyle looks well and feels well and we feel super lucky that
he has had a great response with chemo as we know this
isn't always the case.

Hoping for good results with Y 90 as well.

I said it feels like we're "rolling the dice" again and we will
see what happens. 

Thanks to anyone who has anything to share with Y 90
that has been through it!

Dorien smile

Great news Jason!  I've been wondering how you guys were doing!

Kyle just finished round 11 (or was it 12?) of Gem/Cis....he's still
doing well with the drugs.  Had some ear ringing, but hearing tests
indicate he  is well within normal ranges....

Our 3 opinions here in Utah all agreed radiation was a great next
step to zap his liver tumor (he has one only).  So he goes in
for y 90 on Tuesday.

And yes, I agree, new stuff sure makes one nervous!
So we are nervous, yet hopeful!

Best wishes to you and your wife in the continued fight against
"this monster" (good term for it--my name for it usually includes
some not very nice profanities!)

Keep fighting the good fight!

Dorien (and Kyle)

17

(4 replies, posted in General Discussion)

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.

sad

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 cancer

I'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!!) smile

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  sad

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.
Dorien

21

(14 replies, posted in Announcements)

I 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.

22

(10 replies, posted in Introductions!)

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.~
dorien

Pat
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.
Dorien

24

(50 replies, posted in Introductions!)

so sorry to hear of your loss. sad

yes 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.