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4/2011 - They said it couldn't be done

janie1
Posts: 753
Joined: Apr 2011

I feel the need to post this on the last day of 2011, the most horrible year.

3/2011 - Had a complete blockage (everything was fine the day before). NEVER had any symptoms. Had surgery, 22+/27 lymph nodes, mets to liver. Had more scans. Not really sure but had in the vicinity of 20 tumors, scattered all across the liver. Devastated little ole me told the surgeon I would be willing to go anywhere in the country for the best treatment. He brushed that off, saying the oncs here were just as good, many of them get the same training. ??????????

4/2011 - On post-op visit to colon surgeon, I ask him a couple more questions. I told him I met with the onc HE recommended --- SAME little hospital. To see what the surgeon's response would be, I told the surgeon the onc said it might be possible to eventually have surgery on the liver, depending on how I responded to chemo (the phrase we cling to like glue). But, he sounded a little squeemish. (The red flags were starting to hit me in the face.)

The surgeon THEN said (just as if we were discussing something as insignificant as the weather)...... "No one will EVER touch your liver"..........
I actually had him repeat that!!

BAM! Thank you and SEE YA.

8/2011 - Long story short.....got another opinion at a great place a long, long way away. Had HAI pump implanted in abdomen to direct target the liver with chemo. Treated since then and ONLY there. Did systemic, too, Irinotecan and Oxi. Had ups and downs. Had to start Neupogen injections after only second treatment. Liver enzymes elevated for a couple of months. (Now back in normal range.)

On my last chemo visit AND SCAN of 2011 (Dec. 21) while I was feeling rather down about everything, the onc said I needed to see the surgeon that day. Met with him and
SURGERY on the liver is scheduled for mid-January 2012.

While this fight goes on and on, at least someone is trying to give me a chance. Wow, that never happened before.

I had to do all my own research. I actually think it is irresponsible for doctors not to talk about other options provided by OTHER cancer hospitals. My first onc should have been well aware of this treatment.

Since March, I came to this board everyday looking for answers. While shocked and dazed, I am pretty sure my first introduction to the HAI pump was mentioned here by Mom_2_3. And learned Phillieg had the pump, too. So between the 2 of them, I asked a million questions and they graciously answered all of them. ( As you would expect, Phil even numbered his answers, so as to not miss any questions...lol ). Amy - I hope you see this. I'll PM you anyway.

It's kind of scary to write about this, considering I haven't even had the surgery yet. But it just seems kind of fitting to transition into the new year this way, because I so much want EVERYONE here to have a HEALTHY NEW YEAR.

( I think I may have my first beer tonight since March....just one...since the liver enyzmes are back to normal....it's just been a hellava year )

Love and peace to all of you.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I'm glad that I was able to share my experience and offer some hope where there wasn't a whole lot before.
It's not an easy road but I do believe it can carry us to the next level of better health.
Have a Very Healthy and Happy New Year...
-phil

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Yay to you and FOR you Janie! I too have learned much from people on this Board...but what you learned could very well have saved your life. Thanks for sharing this news.

lauragb
Posts: 370
Joined: Aug 2011

Hope for the new year. I'm so glad you learned from here and didn't take
"no" for an answer.
Sending light and prayers your way for a successful surgery.

Laura

mom_2_3
Posts: 965
Joined: Nov 2008

We had a double sleepover last night and I am in the midst of cleaning up broken chips and popcorn and pretzels all over our playroom (we live like animals I guess...). I decided to check the board and saw your post and stopped my cleaning immediately. What wonderful news to hear on my New Year's Eve!

I am so happy to hear this. I remember her telling me to see the surgeon and he told me I would be having surgery 11 days later. It was a whirlwind. I had Dr D'A and he was awesome.

Let us know if you have any questions about liver resection.

I will be there Jan 9th for pump fill. Maybe you will be there that day too and we can meet.

xoxoxox
Amy

mom_2_3
Posts: 965
Joined: Nov 2008

So excited I double-posted. Sorry!
Amy

tanstaafl's picture
tanstaafl
Posts: 1302
Joined: Oct 2010

You are your own best advocate. Congratulations, on not letting some doctors stop you.

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

That is wonderful news. Truly something to ring the New Year in with gladness. Happy New Year!

Kim

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

it's great to hear that you found the strength to advocate for yourself. We shouldn't have to do that, but it seems to unfortunately be very common. Best wishes to you that your surgery will be a huge success! Ann

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Just.....................:) !!

W2Go!

-C

janderson1964
Posts: 2215
Joined: Oct 2011

THat is awesome that you researched and faught for your own survival. I have been proavtive in my cancer jouney from the start. It has now been over 6 years. That is great that you can now have liver surgery. I am recovering from my third liver surgery so if you have any questions please fire away on the forum or PM me.

Jeff

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

Congrats on your upcoming surgery. Enjoy that beer tonight, you deserve it. Have a Happy and Healthy New Year.
Karen

buckeye2
Posts: 428
Joined: Jul 2011

That is fabulous news. Instead of 11 beers tonight, I'm going for the full 12 pack. Lisa

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Your story is full of hope.
Stay positive its infectious in a good way.
Did you know that 2012 is the year of magic, well hears is hoping.

its a great story, keep on sharing it, these stories of hope are what really helps us here.

hugs,
Pete

ps let us know the surgery date, i will send a few prayers upstairs, after he's finished helping me, i am sure he will have time for us all.

here4lfe
Posts: 306
Joined: Jan 2010

Starts:

Somebody said it couldn't be done but he with a chuckle replied,
That maybe it couldn't but he wouldn't say so until he tried.

Good for you,

Best

rlridings's picture
rlridings
Posts: 42
Joined: Nov 2011

they told me the same - can't operate - had a friend refer me to MD Anderson - that was in Dec 2010 - chemo shrunk the tumors and they operated mid 2010 and another surgery hopefully this April - very hopeful on that outcome so hang in there and keep believing

yoga
Posts: 87
Joined: Feb 2011

Thank you Janie!!!

You have given me much needed hope - and something new to look into.

I was diagnosed in July of 2010 and have been on chemo every two weeks except for a couple of very short breaks. My liver had about 20 mets and I was told the same thing by my onc. I eventually switched oncs and this one has not written me off yet. The surgeon has said that he can't touch me but that "maybe", if chemo works more that it might be a distant possibility - not much, but I will hang onto anything. My chemo stopped working in late November and I was switched to oxaly with 5FU (still trying to get funding for Avaastin). I will find out how this is working next week, but my gut feeling is not that great at the moment.

I have started investigating the HAI pump and will certainly be bringing it up with my onc next week. If he isn't receptive then I will be looking elsewhere.

Once again, THANK YOU, you have certainly given me a bit of much needed hope!!!

May you be blessed with continued good news through 2012.
hugs
yoga jo

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

That's right girl, you use that "go get 'em" attitude. You did the right thing, kept looking at other ways to get what you needed by searching and asking questions and seeking the right answers. So proud of you!!!
Love and peace back at you!
Winter Marie

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