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
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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 🎶
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.
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
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 .
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.
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
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
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 🤗❤️
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
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
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.
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.
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?
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
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