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Winnie's update, Back to Chemo

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Well, world has changed again,

Surgen decided to many spots in abdomen and just want me to go back on chemo for 6 months and then he will re look at the liver when things are brougt under more control,

He wants me to have atleast 6 months of chemo, Oh goody can't wait.

My ileo will be with me for atleast 7 or more months, Not happy but it could be worse..

Just need to concentrate on killing the cancer with chemo.

I am extremely stressed out, I was hoping i'd have liver surgery and my reversal and life would go on hopefully cancer free.

But no, that would be to easy,

How do you all fight this cancer year after year, I just been told that a whole nother year is at minimum what i can expect, 6 months chemo, 6 weeks recovery, surgery 4 weeks to 6 weeks recovery, and 6 months chemo, that what i get to lookforward to.

Wow,

I will have to wrap myself around this, may take a while,

Live, Laugh, play
Winnie

AnneCan
Posts: 3692
Joined: Oct 2009

Winnie,

I know you are disappointed to not have the surgery now. And I know looking at 6 months of chemo is not fun. I have been on folfiri + avastin since the beginning of September 09. I have told my story many times before - I was supposed to have colon resection in the fall of 09 + had radiation + folfox in the summer to shrink my two colon tumours. However at the end of August I was told they had determined I had four liver mets + was not eligible to have the resection. I was really devastated. My surgeon's nurse said to me that if they did the colon surgery, they wouldn't be able to give me chemo for a period before or after the surgery + the mets would grow. She said the chemo will work on your whole system, not just the liver mets. I wasn't sure whether to believe her, but after my first 4 treatments, the cancer in the colon was "non-detectable" + my liver mets had shrunk. I was so happy! I had a 2nd scan in February + the chemo has continued to work + shrink the mets. I guess what I am trying to say is this approach may in the long run may be better for you - if they had gone ahead + done liver surgery, the mets in the abdomen may have grown, where now the chemo will hopefully knock them down. I am truly sorry for you; I realize this is a big disappointment for you BUT when I read everyone's stories I realize there are many routes to success. I have my chemo manageable so far; I hope you will too! My thoughts are with you.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I know it sucks to hear more chemo. The only good thing is that when you are IN the chemo fight, you live in those 2 week cycles, so the time goes much faster than it would otherwise; at least it does for me. It totally sucks, but the suckiness gets into a predictable rhythm and suddenly you are done with it. AND, you have lived another 6 months to live the tale! Just keep on top of side effects, don't try to be super woman, and come here and post often; we want to hear how things are going and offer any help if we can!
mary

damama24
Posts: 175
Joined: Nov 2009

Hang in there. I'm starting over with chemo also and needed your words of incouragement. At this time chemo is all i have as I am inoperable. Just keep the good thoughts going and tell yourself you will make it through this. This will be the treatment that will get you to surgery and you will put cancer in its place. i'm praying for you and wish you the best.Blessings to you all. Deb

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Yep........... sure sucks! I am so sorry you have to go in for another battle.... just remember...you ARE winning the war! you WILL continue to win because you are such a fighter Winnie. You have what it takes to be the ruler in your domain. You go girl! Will keep you in my prayers.... as always.

Jennie

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

"How do you all fight this cancer year after year?" by Winnie Pooh.

I'm about 6-weeks shy of SIX YEARS of this stuff, so I'll just offer you my experience:

The answer is simple and complex, both at the same time. It's a Merry-Go-Round and everything cycles back around the longer that you are in it. We see some folks do their 6-months to a year and they are "outta' here." Others of us have to soldier on longer to get there.

Sometimes, it can be "Mind over Matter." We simply will ourselves to get up every morning, do our scans, our treatments, our surgeries and what have you, with the ultimate hope that we too, will overcome our odds and see the other side of health again.

Other times, we falter, we get down or we get sad - or we are beat up from our treatments and surgeries and need to rest our minds and bodies.

Cancer is a "Marathon" for most of us - there are many trials, and many miles to walk, before we reach our desired goal. It's managing the TIME that can be so overwhelming. You watch the clock go by, the days turn into nights, the weeks turn into months, and the months turn into years.

But we know what the alternative is, Winnie - so I think this is the motivation that we use to keep our fights going. It's not easy and we lose alot of quality time, but we were already losing before, right? So, we have to trade some more good days for the hope of future tomorrows. If we can just keep string those days together, one day we look up and it could be behind us. If it is not, then we did not let Cancer beat us, we fought it all the way down the line - and that's the courage and strength that resides deep in each one of us.

From time to time, cut yourself a "slice of life" and enjoy that moment for all that is worth - we sometimes wait for the "big inning" but sometimes that does not come. We must seize a moment here, an afternoon there, and take back some control of our life, so we can literally thumb our nose at the Cancer and tell it, "Up yours!"

For many folks, it is different things - many have wonderful families who become their "lighthouse in the storm." So, it's different things to different people.

One of my surgeons told me so succintly: "There's gonna' be good days - and bad days."

So we just take the good with the bad - we relish any good time we get - and we get up every morning and stay after it.

Remember Winnie - "The race is not always won by the swiftest, rather slow and steady steps will still get you to the finish line - and victory!"

Now, have a great day and you hang tough! You've come too far to lay down for too long - sending you a big ol' hug...((POOH))

-Craig

lcarper2
Posts: 638
Joined: Dec 2009

I too have wondered how they do it. Well that was than and this is now as I just found out yesterday I have a cancerous tumor on my liver bile duct that 2 weeks ago was not operatable now test results showed it is....So we will wait and see what ONC says ...but I told my husband that the devil picked the right person to give it to again because he has no idea who he is messing with and God is standing there saying my child I am the one who turned the waters into wine...We will beat this and just need to ask for more strength to do it and it will be sent...I am praying foe you my friend.

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

...I'm keeping you in my prayers. I think Craig said it well...it's a marathon.
Holding you in the Light with Hope, Healing, and Peace.
Aud

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I'm not Stage IV so this is second hand knowledge but I read that chemo cannot reach 'spots' in the omentum so that's why people have HIPPC. Be sure to question him on this or do a search. Maybe someone who is more up on this will share their thoughts.

Meanwhile, I'll be thinking of you! Didn't you tell us you have MS or Lupus?

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Thanks
I will look into the threatment for spots on the Omentum, Have not seen my MRI just read the report and they say that they are in the peritoneum and serosal surface of the cecum where ever that is, ( thats where the new stuff is) know anything about that.?
Winnie

abrub's picture
abrub
Posts: 2119
Joined: Mar 2010

The cecum is at the end of the colon, a segment that hangs down beyond where the colon meets the small intestine. I would guess that the "serosal surface" is the outside of the cecum, the part visible in the peritoneum, as opposed to the inside, which is viewed on colonoscopy. My cecum was removed at the time of my hemicolectomy, and I don't miss it. Bowels function fine without it (and I got to "see" where it isn't, as I watched my entire colonoscopy on Tuesday. The upper end of my colon ends at my small intestine; it doesn't just join it and go beyond a bit (into the cecum).

My omentum has also been removed, and I've had IP chemo, tho not the heated kind. They're saving that for when my cancer comes back.

C Dixon
Posts: 202
Joined: Jan 2010

Hi Winnie,

I had the HIPEC because I had it on my diaphragm. That is probably what you will need. No every surgeon can do it. I would recommend a major cancer center. I had mine at Duke but I don't think they are the leading experts. I just loved the liver surgeon who would be in there with me.

I know it's tough. They just told me that I would have to have more rounds when I thought I was going in for my last. I love my doc but I wanted to kick him that day!

I had the surgery in September and the only thing I still notice is tightness in my abs. I have to stretch them regularly.

Praying for you,

Catherine

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Along with liver mets is what my sister has. I can only add looking back on this whole journey that you need to find someone that is an expert with peritoneal mets. I think it is not too common in colon cancer and finding someone that knows HIPEC and is an expert in it can be crucial.
I am sorry you need to keep fighting this! I cannot imagine how difficult all of this is, but know that you have got to keep on fighting and not give up. Remember, you have options and that is a good thing!
I am praying for you Winnie!

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

I am sorry this has happened to you. Just when you think you see the end of the tunnel, it gets longer. One member, Crow71 (Roger) just had surgery last week, liver resection, rectal tumor remval, reversal and HIPEC. I checked his caring bridge site and he is doing well, out of ICU, walking, etc. His surgery was very long 12 hours, and it was done, I believe, at Wake. I'm just telling you this so you remain hopeful for future surgery and a light at the end of the tunnel. His wife, krf, posted on 4/15 and if you pm her she may be able to give you more info.

Take care - Tina

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Beautiful picture...thank you for sharing that warm smile....It reminds me of my daughters smile looking over her teddy bear at age 3...Keep the mind sharp and the spirit sharper and you will get through this in no time at all...and keep the smiles coming, you wear them well.......Love to you and yours, Clift

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