Hi roseGrg

I was diagnosed with PPC in June 2020 and have undergone chemo and an ultra radical de bulking surgery.

Please feel free to message me with any questions you might have, I might not know the answer, but I am happy to share what I know of this disease and the treatment.

I'm guessing by now you've had all if not most of your chemo? what stage were you?

Are you having or have you had the surgery?

Looking forward to hearing back from you. x

[@Snippy]‍ 

It's very nice to hear from you. I hope you are doing well. I'm stage 3c. My initial plan was to have 6 cycles of chemo. 3 to start with, review for surgery, and 3 more. After reviewing my CT scan on MDT after the 3rd chemo, it was decided I needed surgery. However, when I went to see the surgeon, he wasn't very sure about the surgery because he said that I was responding very well to chemo and didn't want to jump right into surgery. MY initial CA125 was 3044 and it dropped to 6 before my 6th chemo. So I completed my 6th cycle on 27th September and had a CT scan. After another MDT meeting, it was decided that I needed the debulking surgery,  followed by 2 more chemotherapy. I have surgery booked for 31st October which I'm dreading.  Because I have the BRCA2 gene, I am eligible to have Avastin and I will probably be put on Olaparib for 2 years. That's the plan for now. 

How was your recovery after the surgery and how are you coping now? Did you get Avastin?

I coped well with Chemotherapy but I'm really scared and not looking forward to the surgery.

Rosani x

Hi Rosani

I'm a bit older than you and also very overweight, so I struggled with the surgery afterwards, I ended up having to have a chest drain inserted as I had a collapsed lung, but all in all I recovered from it fairly well considering.

I had 4 chemo's before and 4 after, then I went on Avastin, I only had 11 doses as I was suffering from sever breathing problems, but we found out later it was nothing to do with the avastin, it was to do with my diaphram, apprently during the surgery they removed several nodules of cancer from it and it had partially paralised it, this caused the breathing problems and I am still overweight.

My surgery was 8hrs long, but they got all of it, including a 15cm tumour from my bowel.

However I am having some symptoms and a raised CA125, so it looks like it has returned, 

I should know more on Monday

xxx

I was told by my surgeon that with this type of cancer there's a high chance of reoccurrence. It's really sad knowing that even after going through all that treatment. I hope it's just a false alarm for you and you don't have to deal with all that again. Did you get any other major side effects from Avastin on its own? Are the side effects similar to having chemo ( nausea, fatigue, and so on)? I am supposed to have 18 rounds. I know my life will never be the same as before but it feels like there is no end to this.

I had no side effects from the avastin whatsover, and I do wish that I had stayed on it, I was origionally awarded 19 doeses, 

Avastin is not like chemo, although it is adminitered via an infusion just like Chemo, but you shouldn't have any symptoms from it.

It's definately worth having it.

I remember I was teriffied of having it after I read the side effects, but my cancer nurse said this to me and it stuck "if it was my mum or my daughter, I would tell them to have it", that's what made up my mind to take it.

I know what your saying about things not being the same, but it sounds like your doing well and although things may feel like they will never be the same again, so what! you're here, your alive and that's what really counts at the end of the day

Your not on your own, let me know if you ever want to talk and I will get my personal number to you, xx

I am glad to hear that the side effects of Avastin aren't so bad.  It is very reassuring to talk to someone who had the same diagnosis as PPC is very rare. It is a long journey but like you said I should be thankful for all these treatments that are keeping me alive. Thank you so much for all this information. I feel very relieved. 

I hope you have a good weekend x

Rosani 

Your very welcome.

reach out whenever you like, I felt exactly the same as you, there was no one who I could reach out to with the same disease,

take care xxx

My husband is going through the same thing . They have recommended chemo... But unfortunately can't have that at the moment as his gall bladder is now playing him up he hall a gall stone and now needs that removed. 

Hi there, I will use this thread as I can see is fairly recent.

My mom has been diagnosed which this particular cancer, which she developed after an isterectomy and consequent radiotheraphy which, appartently, caused acites.
The isterectomy was in early december 22, then she was taken to the hospital again 3 weeks ago because of the issues caused from the ascites, and there she was told about the cancer.

She is not keen of going into surgery, therefore I would like to find out if there are non-surgical cures around, beyond chemotherapy (she had only one session so far, next one due in one week). For instance I've heard about proton beam therapy, and laser ablation, which I've been told being very effective.

Has anybody tried these forms of therapy at all? 

Thanks for your help