Just saying, don't give up: Hi Ladies, I just... - My Ovacome

My Ovacome

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Just saying, don't give up

1032 profile image
1032
35 Replies

Hi Ladies, I just want to say that never give up. I was diagnosed with stage 4 ovarian cancer with secondary in lung. That was the end of 2016. Had surgery, all the chemo's that they could give me, then out of options, nothing more to give me. I arranged my funeral, Wills done, I was seeing palliative care, I was fighting to make it to mid January AND then a new drug Lynparza (different names in different countries) went on the PBS (so it's affordable)list in November. I started immediately. It was terrible at first, feeling sick all the time, red blood count dropping and having to have blood transfusions weekly. Then dose adjusted, no more blood transfusions, my body got use to it. Now it's mid July and I'm still kicking! I don't feel good all the time, but heck, I'm alive.

I was so prepared to die and I accepted it so calmly, I can't believe now how calm I was. My partner and I both needed to talk to a physiologist when I was going to keep living.

Please don't give up hope, that's all I'm saying.

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1032 profile image
1032
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35 Replies
Tabor profile image
Tabor

Hello 1032, wonderful news and I agree never ever give up. I love hearing you are strong and positive. God Bless you and praying for complete healing for you. My cancer journey started 30 + years ago I’m now 69 years young. I have went through chemotherapy 4 different times through these years and now I’m on maintenance pill Rubraca because I’m Brac2 positive. It’s been 3 years now with no cancer. I never gave up and never will. Take care and listen to the music 🎶

1123J profile image
1123J in reply to Tabor

Thanks

1032 profile image
1032 in reply to Tabor

Wow 3 years, how great. Enjoy.

Realistic profile image
Realistic in reply to Tabor

Your amazing & thank you for sharing. And that most certainly my motto never give up.And l love the music lm a year ahead of u in age

But will never admit it lol. Lets all fight this together and try every door . Any of you visited the Maggie centres there absolutely brilliant

If you can pay a visit. My husband and l at the moment are doing the 5 mile walk in aid of the centres in September they really are invaluable

Like this site allsorts going on makeup classes cooking, found them so brilliant meet men & women in the same situation which helps to know your not alone. And there raising money to keep there centres up and running. Give them a visit if your lucky enough to have them.

Sending love to you all SheilaFxxx

Bettyxxx profile image
Bettyxxx

Wow great post thank you, what a roller coaster, i hope you get years of lovely settled time, its great to prove those figures and expectations can be wrong, long may it lastLove

Diane

Jacky5 profile image
Jacky5

Thank you...that's a wonderful story! I'm so glad the Lynparza is helping you and long may it continue.Liz x

Riverflo profile image
Riverflo

Thanks so much for sharing your uplifting story. It really helps . Best of luck and best wishes to you. xx

mrstadpole profile image
mrstadpole

That is such wonderful news and so encouraging to hear xx

Lyndy profile image
Lyndy

Thanks for sharing! Glad you have fought back ❤️ I am 3 months into Lynparza (Olaparib) and ca125 still falling so all fingers and toes crossed xx

1032 profile image
1032 in reply to Lyndy

May we all beat the stats. How lucky are we!

Baby_Girl profile image
Baby_Girl in reply to Lyndy

Does this work for low grade?

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply to Baby_Girl

Hi there Baby_Girl

Thank you for your question.

I can see from your profile that you're in the U.S. As we are a U.K based charity, some of this information may be less accurate or relevant for you due to geographical variation.

So far, the clinical trials for olaparib, rucaparib and niraparib (all ‘PARP inhibitors’) – and the subsequent licencing and NICE (National Institute for Health and Care Excellence) /SMC (‘Scottish Medicines Consortium) agreements – have been for high grade ovarian cancer. However, there are targeted treatments available for low grade ovarian cancer. There is more information about targeted therapies in our information booklet here: ovacome.org.uk/targeted-the... .

There is ongoing research into the treatment of low grade ovarian cancer. For example, the RAMP 201 clinical trial is presently investigating the efficacy of two different targeted therapies, either independently or in combination. More details about this trial are available here: clinicaltrials.gov/ct2/show... .

There’s some more information about how low grade ovarian cancer is treated in our information booklet which may be of interest to you: ovacome.org.uk/low-grade .

Best wishes

Annie

Ovacome support

Ruebacelle profile image
Ruebacelle

Good for you accept and fight a good mantra. Are you brcapositive? Hugs from paris

1032 profile image
1032 in reply to Ruebacelle

No not brac positive but Govt. put Lynparza on PBS for all ovarian cancer that have done all other treatments.

DinkyAnnecy profile image
DinkyAnnecy

Hi Thank You so very much for sharing your story to help others. I just started Lynparza and I am scared of the side effects especially since I did not handle first line chemo well. How did your doctor determine you needed weekly blood transfusions. Did they test you weekly or after your blood test they determined it would be weekly transfusions to get things back in order? What dose are you currently on? Many blessings to you and your partner.

1032 profile image
1032 in reply to DinkyAnnecy

Remember Lynparza is not chemo. It takes at least 2 months to get into your system. At first I felt sick all the time, I found things that really interested me(we went away up north looking for dugongs) and that keep my mind of feeling sick. It get's better. My big side effect was Lynparza dropped my red blood cells, I was down to 67 at one stage. I think it's about if your red blood count drops below 100, it's not real good and may need blood transfusion. Anyway, dose sorted, I take 3 tablets a day, 450mg day and that is working for me. I started at 600mg day. Yes, a blood test for blood count.Hang in there, and enjoy life. All the best. xx

What country are you in?

DinkyAnnecy profile image
DinkyAnnecy in reply to 1032

Hi again I am in the US

1032 profile image
1032 in reply to DinkyAnnecy

I'm in Australia. Queensland

1123J profile image
1123J

I'm 33 what's the name of the new blood test to detect cancer blood cells early

1032 profile image
1032 in reply to 1123J

CA125 blood test.

Gemmyw profile image
Gemmyw in reply to 1032

ca 125 test isn't enough on its own as some ladies naturally have unusually high or low levels. This means a call 125 can often result in false positives or, more frighteningly, false negatives x

What a star you are ⭐️ Thanks for giving us all hope 😘

Cumbrianlass5 profile image
Cumbrianlass5

Good for you girl. So delighted for you. It is wonderful to hear positive news. Keep on fighting the good fight. All very best wishes x

Ettenomis profile image
Ettenomis

Hi! Yes I'm on lynparza and actually have felt fine so far, Dr's are happy for me to stay on it and I'm living life to the full. Got to keep on keeping on! You sound like you're doing fantastically 🤗❤️

1032 profile image
1032 in reply to Ettenomis

And same to you. Love life.

Casamimosa profile image
Casamimosa

Wonderful news! We have to keep fighting!

Iside profile image
Iside

Terrific to hear, just proves ‘The Power of Positive Thought’ and the right drugs can give you the strength and fortitude to Live. Well done it is a heart warming account, Thankyou. Iside X

Realistic profile image
Realistic

Your so right and thanks for your words of wisdom . I will never give up l hope and its helps reading everyones different journeys for me it gives hope. Keep well keep fighting love & hugs SheilaFxxx

Lovecats7 profile image
Lovecats7

Hello 1032, that is wonderful news and I couldn't agree more to never give up. So you started Lynparza in early 2017? Are you still on it, wasn't sure> I have been on Lynparza for 2 years and now must make a decision whether to go off or stay on because there is no data after 2 years yet. Really hard decision, since I feel like it is my security blanket. Not sure what to do.

1032 profile image
1032 in reply to Lovecats7

I started Lynparza Nov. 2020. the data I was shown went up to 5 years. With 5 years being if it worked well for a person. 3 years if only worked OK for a person. Heck ask your oncologist for the latest data on Lynparza. I'd be staying on it as it's keeping you alive. Check new data with your oncologist.

Lovecats7 profile image
Lovecats7 in reply to 1032

My oncologist, whom did save my life says that the data they have is that if you are NED after 2 years to go off but if not your doc can keep you on it. She tell's me that I can stay on it if I want, but she has no data beyond the 2 years. New data should be coming soon, but she does know when. Do you know where I can find the data you saw?

1032 profile image
1032 in reply to Lovecats7

I'm in Australia. My oncologist showed it to me and I didn't look at what site .

Lovecats7 profile image
Lovecats7

Ok, thank you and lets keep on fighting the fight!

Mum2G profile image
Mum2G

Hi 1032, I’m in a similar position but since 2017 after my first IV experience in 1994I’m on 2nd recurrence now involving lung and trying to adjust to Trametinib, the face rash has been horrendous this week

Good to read your positive post, long may Lynparza keep you well x

Katmal-UK profile image
Katmal-UK

Brilliant post, so glad to see you are still kicking!

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