Appointment : So letter came today to see... - My Ovacome

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Appointment

ellseybellsey profile image
18 Replies

So letter came today to see consultant on Friday post biopsies , I am praying I will get 2nd surgery if it is only in the vault and pelvic nodes. So pleased I had a wonderful time in Iceland with my granddaughter before starting treatment.

Also I have been trying too read anything on treatment for reoccurrence all I keep seeing is being chemo sensitive I will most probably go on Carbo/ Taxol again.

Has any ladies who are chemo sensitive had any other options other than Carbo/ Taxol when reoccurring.

Ellsey xx

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ellseybellsey
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18 Replies
Yoshbosh profile image
Yoshbosh

Hi Ellsey,

I had carbo/gem for my recurrence. It seemed to work pretty well, and I found it far easier than carbo/taxol (no hair loss too).

Fingers crossed you get the surgery you would like.

Vicki x

ShropshireJo profile image
ShropshireJo

Hi. Glad you had a great time in Iceland. It looks a fascinating country. I had carbo/taxol for my recurrence. Didn’t know at the time that some ladies have a reaction against carbo so ended up half way through on cisplatin rather than carbo with the taxol. Hope it all goes well. x Jo 🌼🌺🌻🌹🌸

ellseybellsey profile image
ellseybellsey in reply toShropshireJo

Thanks Jo, I just want my treatment plan and get on with it, although I’ve been told I will have chemo I didn’t ask what type. I suppose all will be revealed on Friday.

Hugs Ellsey xx

ShropshireJo profile image
ShropshireJo

All the best for Friday. Keep us posted xx

Tempestteapot profile image
Tempestteapot

Wishing you all the best! So glad you had a lovely time in Iceland with your dear Granddaughter. xxx

Just thinking of you and wishing you all the very best for Friday, keep those memories of Iceland and enjoy them, I am glad you both had a good time

Suzanne333 profile image
Suzanne333

Hi

I had carbo taxol first line and then again for recurrence although during second line I had an anaphylactic shock caused by the carbo so had the last three cycles taxol only. I had a complete response though so taxol works for me.

Good luck. You’ll do well. Thinking of you. Xxxxx

SCWI profile image
SCWI

Hi Ellsey

As a few of the ladies on here were talking about yesterday, I am having Carbo/Caelyx for recurrence. The first one was tough but second one fine. Also you get to keep your hair. I think they are keeping taxol as a possibility for the future for me. Good luck with whatever you/they decide. My recurrence is too insubstantial to operate on being spread around a few places. Xxx

Nicky100 profile image
Nicky100

Hi Ellsey.

It sounded like you are having some useful tests done. What hospital ate you at?

I was only offered carbo/caelyx for my recurrence, so I looked for a second opinion and ended up with a radical surgeon in London. Then had more chemo.

I believe it is the surgery along with all the supplements and complimentary medicine that I that is doing me good 12 months later.

I hope you get the answers they you need. Do email me if I can help.

Love Nicky x

ellseybellsey profile image
ellseybellsey in reply toNicky100

Nicky hi

I am under Mr Taylor at Royal Surrey County hospital it’s where I had my first debulking surgery. If he says no surgery tomorrow I will consider a 2nd opinion.

I think I watched you on television last year?. Sending you virtual hugs.

Ellsey xx

Nicky100 profile image
Nicky100 in reply toellseybellsey

Hi Ellsey,

Yes, the BBC did a documentary about the surgeon as she is becoming well known for her incredible radical work and also on not being able to access parp inhibitors on the NHS.

If you need a second opinion, I recommend this man and this colleague Prof HG at the clinic: theloc.com/consultants/dr-j...

They are amazing.

Good luck, Nicky xx

Sunfleury-UK profile image
Sunfleury-UK in reply toNicky100

Hi Nicky, did you see that Ovacome's policy with regards to use of consultant's names has changed following the review & consultation? It's now ok to do so (Obviously only if wished and of course must done with positive intentions). SX

Nicky100 profile image
Nicky100 in reply toSunfleury-UK

No I had not seen that?

That is great news!

Jonathan Krell and Hani Gabra are the consultants I would see in London. They both work at Imperial too xx

Sunfleury-UK profile image
Sunfleury-UK in reply toNicky100

healthunlocked.com/ovacome/...

Sunfleury-UK profile image
Sunfleury-UK in reply toSunfleury-UK

The updated guidelines are a pinned post, but with regards use of names:

"Previously we asked that you did not name clinicians. We know many of you were unhappy with this and that discussing services is helpful, so we have now changed this so clinicians and services can be named. Please read the guidelines below regarding this and the need to avoid defamation as My Ovacome is a public space. If you want to share private information, please use the private message facility."

Di16 profile image
Di16

I've had Carboplatin on itsown, then weekly Taxol, also Caelyx. All for recurrence.

Di

Jessica-DianeB profile image
Jessica-DianeB

Still think how amazing this is!!

I’ve been told categorically no 2nd surgery!!

Contemplation a whole load of supps if there is no trial drug for me xx

ellseybellsey profile image
ellseybellsey

Thank you for all your support these past months, I know I’ve posted a lot lately.

Strangely I feel more comfortable talking with all the sisters on here, rather than discussing it with my family.

Ellsey xx

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