Update on our appt at Royal Marsden UK

[Ang80]

It didn't go well.
To be honest I wish we hadn't gone. They have said things which have worried mum and now she is so low.
Mum finished her 2nd lot of Carbo and Taxol in March. She has a less than 1cm mass left in her liver, which was 9cm before treatment. Lymph nodes are back to normal and the pelvic masses have gone.
The Marsden Dr said the mass in her liver won't be the only site of cancer. The scan won't show all the cancer in her body which there will be as people who have OVCA that then returns are never cancer free and no second remission. They said all people whose cancer comes back might get a few months chemo free but will need chemo again and again. They said it will be on chemo off chemo on chemo off chemo for the rest of her life and basically there is nothing that anyone can do other wise.
They said she did well to get nearly 3 years from first chemo course to the second. That was the only positive thing they said.
Mum is now really fed up and her hands and feet are still playing her up after the chemo which hasn't helped matters.

While I know some is true what we were told I thought that you could have remission again and some people have one reoccurance and then are ok for years and years.
Sorry for the ramble but needed to tell someone.

[momofsandj]

I'm sorry about your Mum but three years remission is pretty good.  I was diagnosed IIIC in June of 2003, had carbo taxol and then went 18 months fine, with my counts rising until after 2 years and 9 months I started chemo again, The radiologists kept making mistakes so I'm pretty sure it didn't get me into remission and I started chemo for a third time, this time Doxil in February.  The goal is to get me into remission for as long as possible before needing treatment again.  I guess the concensus is that it will keep coming back because of the microscopic cells, but to try to keep periods in between as long as possible.  The chemo is discouraging but if she can get past that and try to live her life in between, at least it will seem like it is worth the effort.  And the longer she manages to stick around, the greater liklihood that they will find something that will work.  OVAture is now is stage III clinical trials and that may help us all.  It resensitizes you to carboplatin.  My sister died of ovarian cancer 14 years ago after 5 years of fighting when they had just found taxol ---- things change all the time -- it just doesn't seem like it -- my best wishes to you and your mum -- just don't give up until there is no other rational choice.

[Jan214]

Your mother was very luck to have had such a long remission so maybe she will get lucky again.  No one knows who or why, so why not her?

I just found out I will be on chemo the rest of my life, (I guess I always knew) but I have insisted on a break because there is NED, just microscopic cells and I think you need time in between chemos to get some of your strength back.  

Different drugs do different things.  I am on my second recurrence or rather 3rd chemo drug as I never have gotten a remission.  Anyway, he is putting me on Topotecan hoping to get me a remission for at least a little while.  He said this drug is designed to get at those microscopic cells and if the chemo doesn't kill me it might actually get me into remission.  So, I guess not all Drs think you can't get remission after constant chemo.
Good luck
Jan

[kismetfarm]

Like your mum when I had my first recurrance nearly four years after initial diagnosis and treatment I was told at that point that it was likely to be ongoing chemos and no cure.  Okay they have the no cure right so far but over three years later I am still here and functioning fairly normally despite various drugs they tried  not working and I have quite long periods without chemo.  I don't know how many times I have been told that if I go another six months I will be doing well - but the first time I was told that was three years ago the week before last. I refuse to die because it fits their statistics.

Occasionally I have a serious discussion with these medical know it alls because I get bored with the assumption that I am marking time. So I point out that I have had the best moments of my life while they were busy predicting I was dying and they can't know with certainty how my body will react to anything because I am an individual not a statistic.

And while it is unlikely to get a long remission after  a recurrence it is not impossible.

(((Hugs))) for your Mum (and for you).

[kimmywah]

Hi,
I am sorry that the doctors you have seen have been negative.  Sometimes I think they not only need to go to Med school but some need to do a couple of terms at charm school too!  The results to me, seem very positive.
My mother was dx with Ovca in 1994 and is very well today.   No-one can predict the future for certain.
My best wishes and prayers for your mum and you.

Peace....Kim

[lucymullis]

I have a friend who had her last round of chemo, due to a recurrence, in March 1994. SHE HAS BEEN CANCER FREE SINCE THEN. Her diagnosis was stage IIIc epithelial serous ovarian cancer in May 1987 when she was 41years old.  If you would like to see her story she is in the current issue of the magazine,"Patient Resource Cancer Guide." on page 48 in the article "Celebrating The Positive." You can find it at major book stores or at www.patientresource.net.

[marie3B]

I know a woman that had a short remission following first-line tx.  After 2nd line tx she got another remission and is still doing well more than 2 years later.  I don't like when doctors give only the negatives.  They need to also point out the cases that do better than expected.  I sure wish your mom the best. I pray she will be one of the ones that does much better than the statstics predict. Love, Marie

[survivor_susie]

I know of several people at stage IV in various cancers who are alive and very well.  A man at work nearly died from his cancer 3 years ago, and is alive and well in stage IV.  Another woman works at a pharmacy; she's 65, in stage IV breast cancer.  They told her to write her will.  It has been 10 years now and she's doing well.
Lucky for us that ovarian cancer is often becoming a chronic condition; it recurs, we fight it, over and over.
I'm not a doctor or anything, but there are two things I hope you'll look in to:  first, radio frequency ablation. It's for ovarian cancer which has mets to the liver.  It kills the mets without harming the liver.  No surgery required.  Then, check to see if her cancer was estrogen dependent.  If so, she may benefit from taking what are called aromatase inhibitors.  Aromasin, which I'm on, is still in clinical trials to see if it stops recurrences from happening.  I'm not waiting for the results of that trial; it has gotten my estrogen level (estradiol) to negative 20!
Best of luck to you and your mum. Don't listen to the pessimists!

[nyc lady]

I am so sorry and we know that this is not the news that you were hoping for.  This disease is a hard one and very unkind....but, as Ronni and everyone else is saying, no one, not even the doctors can predict the future.  No one knows who will respond to chemo and who won't.  

Can someone go into remission for a second time, the answer is yes...it can and does happen.  It may not be the norm, but, there are people that beat the odds everyday.  There is an American actor, Patrick Dempsey, I just read a story that his mother went into remission a 2nd time.

Stay strong.
Pam

[crecco]

I am guessing that her Dr is referring to microscopic cells which in advanced states are always there. I know how your mom feels but yes she is very lucky to have had a 3 year remission. But she should not give up, as Ronni said, no Dr can tell the future. I have been on chemo steady since dx, and I have become used to the fact that I always will be. I know that it is not a pleasant thought, but if they can not cure it for me then at least they can control it, and that is what they are trying to do. I to was told I would be on chemo for the rest of my life. It is hard but when I look at my options, well, there aren't many, so I will take what ever will work.
  Chris

[burrowes]

hi  i am sorry to hear that your mum is fed up, but she must realise that she is very lucky to have had three years remission before she has had to have more trearment, yes i have had 5 years of cheamo 5 different types with a break inbetween of the longest of 10 months they would not give me any more chemo as i have had to much but they put me on a trial drug last june and it has held the tumors off for a year and poss longer.
they have told me that i will never get rid of it but they should be able to keep it under control.

[vegas2cr]

I am sorry that your Mums doctors were so down.  No one and I mean no one can tell the future... I find it awful that doctors so many times seem to think they are predicators... they use statistics and you have to remember that that is all they are statistics... your MUm is a real person not a statistic... If she feels well she should go about her life as best as she can...

I speak from experience... Last April 13 months ago Iwas diagnosed with stage IV and they told me I would not see the end of the year... well here I am, feeling well and beating their statistics... I will not listen to their doom and gloom... I have an oncologist who truly believes that I will beat the odds for a long time...

Hugs to you and your Mum... Ronni