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It's back :( it never even left her.

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

I am numb, it is all I can feel at the moment. Mum received a letter today the results from her first ct scan after finishing her treatment, it is showing some cancerous deposits in her omentum and some fluid in her tummy.
I have got so many questions , what next? Is this beast carbo platinum resistant or can she have more to finish it of,if not what will be the next treatment be and is there any chance of her getting a complete remission from this?
I feel terrible , I was at hers when she opened the letter, I begged her to come home with me, but she said she was ok, I hope she is ok and not sitting there having a fit.
I always new the chances are it would come back but just not this quick , it never left us :(

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

I am so sorry to hear this. I am new to this myself, so I can't contribute anything but my sincere hopes for the best, but I'm sure other, more knowledgeable and helpful members will chime in soon.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I thought removal of the omentum during initial debulking surgery was pretty much a 'given' as it is such a common recurrence spot. (((HUGS))).

This kind of news is so devastating when you first get it. But it is a part of the journey for most of us. & as hard as my family & friends sobbed when I got news of my 1st recurrence over a year ago, TODAY I can hardly even get away with playing the 'cancer card' on them to get out of things I don't want to do! Please keep that in mind; this is a dark day that will be followed by MUCH better days. (((MORE HUGS)))

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

They did remove her omentum, but I think it grows back, it must grow back quick , it is one of the questions that we will ask the consultant.
Ladies cow.d yup help me, I am thinking of questions to ask the consultant, here is my list so far , if you can think of anymore please post them, thanks.

Is the cancer platinum resistant? Or has she just not had quite enough to finish it off?
If not can mum have more carbo taxol.?
What drug is next if she doesn't have carbo taxol?
Could full remission be achieved from said drug?
Could chemo still in her system finish the last bit of? ( last chemo 6 th dec)
We thought the omentum had been removed , how can she have cancer there? And would it be possible operate again?

If anyone can think of anything else, please chip in.

Thanks liz

sarahb74
Posts: 81
Joined: Dec 2010

I'm so sorry to hear it's back so quickly. I've just started treatment for my first recurrence so I know how devasting it can be. Wishing you and your Mother all the best.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Liz....I am so sorry to hear this. I know this journey is as hard on our loved ones as it is on us, maybe more so. I just finished reading Alana Stewart's book about Farah Fawcett's struggle with cancer. It was incredibly emotional and very moving.

As for your questions, I have read that a recurrence within 6 months means they consider the cander platinum resistant IF her CA125 is also elevated. That does not mean your mom won't respond to another drug, or combo of drugs. And she can, of course, achieve remission with another drug (or drug cocktail). Here is some "official" info for you....

The Gynecological Oncology Group (GOG) defines platinum resistance as meeting any of the criteria listed below:

Disease progression while on a first-line platinum-based regimen
Tumor progression within 6 months of completion of platinum-based therapy
Persistent clinically measurable disease with best response as stable disease at the completion of planned first-line therapy
Persistent clinically measurable disease with best response as stable disease with rising CA 125 while receiving first-line non-protocol therapy. Rising CA 125 levels must be documented with two examinations where the last result being greater than or equal to 100.

I am stumped too, regarding the omentum. I don't know if the omentum can grow back, per se, but it's certainly possible for a new fat deposit to grow in the belly. Maybe that's what was meant in your mom's case.

Carlene

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

but when do you start counting how long you are in remission. Is it from sugery or last chemo or what? I don't want to waste my time dwelling on numbers (ie Ca 125) unless of course they are good.

Karen

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

I personally don't think you csn say you are truly in remission until you have your first blood / ct scan done after you treatment.
I asked the same question , thinking mum was in remission, the surgery had gone so well, the surgeon said he removed all visible trace, i know there would still have been cells there but you just hope the chemo would kill those off.we just assumed that she would be in remission.how wrong we were :(
However if the bloods/ ct scan came back good, I would count it from the last treatment date.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Karen....a confirmed remission is determined by two things: a normal CA125 and a "clean" CT scan, both performed within the same time frame (2 weeks or so).

My doctor told me after my 4th chemo treatment that he suspected I was in remission, but without a CT scan, he could not be sure. It was another two months - after I had completed all 6 rounds of Carbo/Taxol and had a CT scan - that he officially pronounced me NED (no evidence of disease). My surgery was Sept 2009, but I count my remission from March 3, 2010 - almost a year.

Carlene

poopergirl14052's picture
poopergirl14052
Posts: 1151
Joined: Nov 2010

sorry to hear your Mum still has cancer. I have never heard of the omentum growing back, but maybe it does. I also Never heard of getting ct scan reports in the mail. They usually go to the gyn/onc, to eval first and the MD would call you in and let you know the plan of care. I hate to think of your mom or anyone get such devistating news if alone,,lucky you were there. This disease sucks!!! Stay strong for your mom....val

Cindy Bear
Posts: 562
Joined: Jul 2009

I just want to say that I'm sorry to hear this. It must be a major disappointment and shock. Hang in there and hopefully the drs. will come up with a new plan and some good answers. Something sort of similar happened to my mom, (uterine cancer) in that we were told midpoint of taxo/carboplatin that her scan was basically good, CA number falling etc. (though probably not a good indicator for her, the high being 58 and that was stage IV before any treatment). Only to ultimately find out the "Treatment wasn't working" I too thought it was strange she got a letter .. I realize you're in the uk and I know everybody does things differently. Hugs and prayers, Cindy

lenjam's picture
lenjam
Posts: 51
Joined: Aug 2010

So sorry to hear this news. Praying they find a new drug that will help your mom!

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Right , ok , I've Googled it and slept on it, and yes we have hit a bump in the road, but this is no where near the end of the road! It is possible for mum to get a dance with NED the sneaky little bugger. Straight on to a different drug and fingers crossed she will kick it into touch.
I have spoken to her this morning, and she seems to be quite positive as well, I said I had googled her situation and that there Are women out there in the same boat who have achieved good remissions after finding out they are platinum resistant.
I think ip chemo is the way forward, trouble is there doesn't seem to be any where in the uk that Does it. :( this is something we need to ask the consultant, she has an appointment Monday morning, I have my questions at the ready. Staying positive , we will not be beaten.

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Right , ok , I've Googled it and slept on it, and yes we have hit a bump in the road, but this is no where near the end of the road! It is possible for mum to get a dance with NED the sneaky little bugger. Straight on to a different drug and fingers crossed she will kick it into touch.
I have spoken to her this morning, and she seems to be quite positive as well, I said I had googled her situation and that there Are women out there in the same boat who have achieved good remissions after finding out they are platinum resistant.
I think ip chemo is the way forward, trouble is there doesn't seem to be any where in the uk that Does it. :( this is something we need to ask the consultant, she has an appointment Monday morning, I have my questions at the ready. Staying positive , we will not be beaten.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Just read this post - my oncolgist does do IP chemo, his name is Professor Gordon Rustin and he's based at Mount Vernon Hospital in Rickmansworth. Google him for more info.
M x

eward
Posts: 210
Joined: Feb 2010

It is so difficult when our moms have cancer, isn't it? My mom had the same experience last year when her numbers were 3800 at her 3 month check up after her first chemo regiment. She is feeling good now and her numbers vary in the 2000 to 3000 range right now, nearly a year after her first recurrance. It is so difficult to recur that quickly. We all think it will be a couple of years before recurrence. But sometimes it isn't and you have to make the most of every moment and keep moving forward. And sometimes when you do that you have more time than you thought you would have. So keep moving forward.
Sending a hug.

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Your right I new it would come back, or there was an extremely high chance that it would, I was just hoping for a bit more time away from this nightmare , same as you, has your mum been on constant chemo ever since?
We do need to make the most of our time, life is precious.

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Wow! I asked the consultant today , he said there was no where in the uk that does it!! Have you had it there?
Well I am on it now , I want a second opinion , I am going to try and get mum referred to there. I know I can get a second opinion , he mentioned it today , but not sure if the consultant chooses who to refer you to or if you tell them you want to be referred to so and so !!!! My mission for tomorrow!
God wish I had seen this last night!

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