Back to chemo....: Off Zejula after a year and... - My Ovacome

My Ovacome

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Back to chemo....

Husbandteal profile image
11 Replies

Off Zejula after a year and begin second go round of chemo next Friday......first recurrence.

Small tumor in abdominal wall, a little fluid, feeling good.....all bloods very good. Being told I have one to two years if chemo is effective. I asked what would happen if we did nothing (am 78) and oncologist replied I would have three months.....yikes! Has anyone beaten these odds? Am needing to hear any positive comments......plain truth works fine, also. Nancy D. aka teal husband.

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Husbandteal profile image
Husbandteal
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11 Replies

Hi Nancy. I was diagnosed 3C in Nov 2011, age 65. Two operations & 6 months of chemo later, I was in remission. Fit & well. It recurred after 18 months. I was then told it was terminal. I asked how long I had and was told "2 years, maybe more". I was lucky to get onto an indefinite Avastin trial and so I went onto Carbo/Caelyx/Avastin for 6 months. Straight into remission. Fit & well. Caelyx is a tough drug but it got me that remission and the Avastin (only) continued indefinitely while it was effective i.e. no dreadful side effects and my urine, blood pressure & Bloods all stayed within the bounds of the trial. I now asked my onc again how long he thought I had. He replied "How long's a piece of string". Technical jargon. The avastin's been a god-send and has kept me in remission for around 4.5 years and I'm still here, fit & well (I've had 80 x 3-weekly infusions altogether). A recent PET scan showed a small new tumour. My CA125 rose to 44 but has now, surprisingly, come down to 38.

Not sure where I'm headed from here but I've had a splendid run. Hope you do too.

Best wishes. Pauline.

Katmal-UK profile image
Katmal-UK

Hi Nancy. I was diagnosed in 2007 at 48, told I had a couple of years..... still here despite 2 recurrences, currently enjoying longest remission. I hope the chemo works and you prove the drs wrong. Kathy xx

Husbandteal profile image
Husbandteal

Positive replies began my day so well! Thank you so much. Can't imagine not having this group to support me! We are all indeed fortunate.

Lindaura profile image
Lindaura

Dear Nancy,

Your consultant appears to be really speaking out if turn.

You are only in your first recurrence, many ladies here thrive after their first recurrence and are clear for many years.

In the meantime, more treatments are devised and more trials made available.

As you are fit and healthy, you could even request a second surgery as well as a second opinion.

Zejula (Niraparib) did work by slowing down the return of your cancer, but it was not the saviour we hoped for.

So on to the next regime. If it is Carbo/ Caelyx, ladies usually tolerate that pretty well, compared to first line.

Weekly taxol can be effective, too and it is also usually tolerated well.

Din’t Give up the fight!

Laura

bluepeterella profile image
bluepeterella

Goodness I can’t understand why you’re being given such a pessimistic outcome! A small tumour and small amount of fluid doesn’t seem to suggest a particularly catastrophic recurrence - I had a lot more symptoms for mine but it’s all gone back into hiding again for now. I wish you all the best and hope you are ready to prove just how wrong an oncologist can be x

Lyndy profile image
Lyndy

I agree.... how does he know?! It might just be worth getting a second opinion if you are feeling well and up for a challenge. I suspect he is being a bit ageist -people can be full of life at 78 ...sounds like you are not done yet! xx

Husbandteal profile image
Husbandteal

Keep those positive comments coming! My oncologist is tops but from beginning tells it as he sees it. I plan to beat the odds.....sort of like being told a delivery is coming in ten days and then arrives early! Thank you! NMD

LittleSan profile image
LittleSan

I'm five years in past my first recurrence. Seems very odd. Keep on keeping on Nancy, prove them wrong! 💪🏻💐😘

Lind58 profile image
Lind58

No one has a crystal ball to say what or will work, or how long you have. I have read many, many survivor stories and many women have beat the odds. You can only hope and pray you will too🙏🏽 Wishing you strength and hope

Hello Nancy - An Oncologist and a Psychic what a talented man! Take absolutely no notice!! We are all different, and to generalise you in such a casual and inconsiderate manner is inexcusable. If I were you I would be looking for a new more compassionate and optimistic Oncologist. Cancer patients have enough to deal with and absolutely do not need toxic people in their care team. Wishing you every success with your continued treatment for many years to come!

Husbandteal profile image
Husbandteal

Thank you!

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