Posts - My Ovacome | HealthUnlocked

My Ovacome

17,744 members • 19,983 posts

All posts for June 2021

New parp

Well after olaparib didn't work for me started new one today . niraparib ,300mg a day ,hope it's more successful than olaparib,bloods tests every week for 4...

Well after olaparib didn't work for me started new one today . niraparib ,300mg ...

patricia54053

•3 years ago

9 Replies

Access to Trametinib

Hello - This maybe a silly question but can I request Trametinib for myMum's LGSC (Fallopian Tube) - even if we had to pay for it ?

Hello - This maybe a silly question but can I request Trametinib for myMum's LGS...

cath_koala

•3 years ago

7 Replies

Upcoming online events with Ovacome

Hello All This is to let you know about some of our upcoming events. You can also see a full list of forthcoming events, groups and talks on our website here:...

Hello All This is to let you know about some of our upcoming events. You can als...

OvacomeSupport

Partner•3 years ago

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On to another Chemo Drug - Topotecan or also known as Hycamtin

Well Hello, Finished two treatments of Doxil/Caelyx and it wasn't for me. My CA 125 went from 198 to 521 which is the highest I have ever been. My Oncologist...

Well Hello, Finished two treatments of Doxil/Caelyx and it wasn't for me. My CA ...

PCCDaisy

•3 years ago

19 Replies

CA125

My mom had stage 4 ovarian cancer in October 2018 and had successful debulking surgery + taxol/carbo and her ca125 has been around 13. But today she was tested...

My mom had stage 4 ovarian cancer in October 2018 and had successful debulking s...

Lind58

•3 years ago

6 Replies

New Member of Ovacome's Support Services Team

Dear All This is a quick message to introduce myself. My name is Cathryn and I have recently joined the Support Services team at Ovacome. I am looking forward...

Dear All This is a quick message to introduce myself. My name is Cathryn and I h...

OvacomeSupport

Partner•3 years ago

10 Replies

CA125 rising but clear scan, low grade ovarian cancer.

Hello, my Mum was diagnosed with 3a low grade fallopian tube cancer last year. She had a total de bulking, no chemo but is taking letrozole. Her CT scans have...

Hello, my Mum was diagnosed with 3a low grade fallopian tube cancer last year. S...

cath_koala

•3 years ago

21 Replies

Cistaplatin side effects - any advice?

Hi everyone. I've had 5 sessions of chemo and had to have a chest drain to remove fluid in my lungs and have a blood clot in my leg. However following the...

Hi everyone. I've had 5 sessions of chemo and had to have a chest drain to remov...

Dichad

•3 years ago

6 Replies

Secondary Debulking & the Desktop III Study

Hi everyone, I'm wondering if anyone has had a secondary debulking? How was your experience? I've learned about the recent DESKTOP study published in 2020. It...

Hi everyone, I'm wondering if anyone has had a secondary debulking? How was your...

Luci22

•3 years ago

13 Replies

I still cannot reply to any ladies on Healthunlocked

I really thought I’d solved the problem of not being able to either answer messages nor send messages myself. I’ve tried numerous times over several days and...

I really thought I’d solved the problem of not being able to either answer messa...

Gemimablackvelvet

•3 years ago

22 Replies

A very sad loss.

It is with great sadness that I report the passing of Linda Pullen. I will miss her dreadfully, having met her for the first time in chemo at Cheltenham...

It is with great sadness that I report the passing of Linda Pullen. I will miss ...

Welshandproud

•3 years ago

36 Replies

Anyone have any experience and personal opinions on the drug Cytoxan. This is a last ditch treatment for me :-(

😊 thank you

Ashkaren

•3 years ago

1 Reply

Emergency operation

So after the initial diagnosis in 2016 and the usual treatment, I'd had 4 1/2 years of ok health but continous and troublesome constipation. I was being...

So after the initial diagnosis in 2016 and the usual treatment, I'd had 4 1/2 ye...

Davonian

•3 years ago

32 Replies

CA125 Increase again!!

Hello ladies I hope that you are all keeping as well as possible. This afternoon I had my monthly telephone Consultation, and my CA125 is now 39. So obviously...

Hello ladies I hope that you are all keeping as well as possible. This afternoo...

Caleda4

•3 years ago

25 Replies

Anyone doing or done radiation for OC tumor ?

Hello everyone. I have a tumor we need to get rid of either surgery or radiation. It is on or in I don't know which a node in a hard to reach place. Have a...

Hello everyone. I have a tumor we need to get rid of either surgery or radiation...

Ruebacelle

•3 years ago

27 Replies

remission is complete

I was writting before, that my mom have 2b ovarian cancer on 2017, after 4 years remission and this may ca 125 run from 18 to 220 :( after CT scan and terrible...

I was writting before, that my mom have 2b ovarian cancer on 2017, after 4 years...

Inguc_is

•3 years ago

12 Replies

Bit chuffed

Just had phone consult with yet another new consultant, who seems very nice,and my CA125 is now 12, - after last chemo but before surgery it was 57! One more...

Just had phone consult with yet another new consultant, who seems very nice,and ...

rosebine

•3 years ago

26 Replies

Disappointed.

I saw my oncologist yesterday ,went in with high hopes came out worried and disappointed. I have been on Rubraca for just over two months first 1200mg a day...

I saw my oncologist yesterday ,went in with high hopes came out worried and disa...

fendweller

•3 years ago

16 Replies

For me, today is a good day ☺️ Hope you all are too?

I had an appt with the most wonderful Prof CF today who gave me a thorough check over including an ultrasound scan & a good chat about any of my concerns. She...

I had an appt with the most wonderful Prof CF today who gave me a thorough check...

Differentforgirls

•3 years ago

15 Replies

Re joining Healthunlocked

I’m having to start from scratch because of a problem with my account Angela

Hidden

•3 years ago

11 Replies

Rising CA125 after COVID vaccinations

Hi everyone, I have been receiving treatment for ovarian cancer for 16 months now, and after chemotherapy and radical debulking surgery I am now taking...

Hi everyone, I have been receiving treatment for ovarian cancer for 16 months no...

JanL100

•3 years ago

22 Replies

Yet another problem

Good morning ladies and admin. I’m having yet another problem now. I’m getting the messages from you ladies but it gives me no option to reply. There are no...

Good morning ladies and admin. I’m having yet another problem now. I’m getting ...

Gemimablackvelvet

•3 years ago

3 Replies

Rubraca

Hi everyone, I've been on Rubraca for almost three months,1200mg reduced after three weeks to 800mg. I'm still struggling with fatigue, for example I've just...

Hi everyone, I've been on Rubraca for almost three months,1200mg reduced after t...

fendweller

•3 years ago

23 Replies

Recurrances

I had a recurrence just after 6 months first time, after 6 carbo/paxlitakel but had not had surgery. I did ask if that meant I was platinum resistant but Doc...

I had a recurrence just after 6 months first time, after 6 carbo/paxlitakel but...

rosebine

•3 years ago

10 Replies

Positive news

Hi friends, just wanted to post for those who may have lost a bit of hope like I had. 2nd recurrence in less than a year, my onc said no more chemo, rising...

Hi friends, just wanted to post for those who may have lost a bit of hope like I...

Esmerelda101

•3 years ago

18 Replies

The time is getting closer

The time is racing by to 10th June for my debulking surgery. I am so scared, yesterday was a really bad day for me I cried all day. I have to self isolate for...

The time is racing by to 10th June for my debulking surgery. I am so scared, ye...

Deanna39

•3 years ago

30 Replies

Problems signing in!!

I think I’ve done it Ladies. Switched off private via the 2 squares at the bottom of the screen. Thank you all for responding. Angela x

I think I’ve done it Ladies. Switched off private via the 2 squares at the botto...

Gemimablackvelvet

•3 years ago

4 Replies

I'm having to sign into Healthunlocked via my email address every time I want message someone or read a message.

Hi Ladies, I'm having trouble messaging and reading messages on Healthunlocked. I think I must have pressed a wrong button that has somehow changed my...

Hi Ladies, I'm having trouble messaging and reading messages on Healthunlocked....

Gemimablackvelvet

•3 years ago

3 Replies

Report someone [contains strong language]

Admin, how do I report someone please? I am receiving messages from Paolo James who clearly is in the wrong place. He picked the wrong person too.

Admin, how do I report someone please? I am receiving messages from Paolo James ...

Levanah

•3 years ago

41 Replies

Report someone

Admin, how do I report someone please? I am receiving messages from Paolo James who clearly is in the wrong place. He picked the wrong person too.

Admin, how do I report someone please? I am receiving messages from Paolo James ...

Levanah

•3 years ago

4 Replies

Posts - My Ovacome | HealthUnlocked

My Ovacome

All posts for June 2021

New parp

Access to Trametinib

Upcoming online events with Ovacome

On to another Chemo Drug - Topotecan or also known as Hycamtin

CA125

New Member of Ovacome's Support Services Team

CA125 rising but clear scan, low grade ovarian cancer.

Cistaplatin side effects - any advice?

Secondary Debulking & the Desktop III Study

I still cannot reply to any ladies on Healthunlocked

A very sad loss.

Anyone have any experience and personal opinions on the drug Cytoxan. This is a last ditch treatment for me :-(

Emergency operation

CA125 Increase again!!

Anyone doing or done radiation for OC tumor ?

remission is complete

Bit chuffed

Disappointed.

For me, today is a good day ☺️ Hope you all are too?

Re joining Healthunlocked

Rising CA125 after COVID vaccinations

Yet another problem

Rubraca

Recurrances

Positive news

The time is getting closer

Problems signing in!!

I'm having to sign into Healthunlocked via my email address every time I want message someone or read a message.

Report someone [contains strong language]

Report someone

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