Ppc

[Juliette35]

Hi, as anyone had a long remission with ppc. Xx

[grannylo]

Hi, strangely enough i have just recurred, 18 months after finishing first line. I don't know if that would be considered long or not as everyone is different. I was diagnosed stage 3C High grade serous and also BRCA1.

My quality of life has been good until just 6 weeks ago. Amazing how quickly the change happens. I did elect to not have blood tests or scans, so maybe been lurking for a while, but just didn't know.

I live in the moment and enjoy each day as it comes.

Love Loraine. L🌼🌷🌞

[Juliette35 in reply to grannylo]

Hi loraine, thankyou, it's a crap desease and all we can do is live in the moment like you say. Though at the moment I am dreading what my ca125 will be tomorrow,. Love the photo of your new baby granddaughter she is lovely, sending you all my best wishes,. Xxx

[grannylo in reply to Juliette35]

Good luck for your numbers tomorrow. Lx

[Juliette35 in reply to grannylo]

Thank you grannylo. Xxx

[Juliette35 in reply to Juliette35]

Thanks loraine, I think 🤔 I have just sent you two replies. Using my phone and it seems to have a mind of it's own. Lol xxx

[grannylo in reply to Juliette35]

I use my phone too and some of the spelling is atrocious. Crazy Spillchucker.

[Juliette35 in reply to grannylo]

Haha lol xx

[Hidden]

Hi Juliette sorry I can't help but I wish you the best

[Juliette35 in reply to Hidden]

Thankyou suzuki, and sending best wishes to you too. And how lovely for you having a new little granddaughter, they are precious. I am hoping to be around for a while to see my two youngest grandchildren grow up. Xxx

[IrishMollyO]

Hi Juliette

I was diagnosed with Stage 3 high grade serous PPC in Mar 2011. Was treated with chemo only Taxol/Carboplatin for 6sessions. My CA125 was over 8000 on diagnosis and it returned to normal and I was pronounced NED after I completed Chemo. It recurred in my peri aortic lymph nodes in Feb 2016 . Again I had chemo and this time Carboplatin only although anything I have read on the subject says patients with a long remission should be offered the same chemo combo as first time. However it appears to have worked up to now so I'm keeping my fingers crossed ! I hope that my story can give hope to people who may have read some less than hopeful statistics. I wish you all the best.

XXX

[Sherrym in reply to IrishMollyO]

Yes. I have read that 2nd line chemo may sometimes last longer than 1st.

I am about 20months now & frankly, never felt better.

God knows though, I never felt ill at diagnosis! So, my body has a mind of its own, I guess!!!

[Juliette35]

Thankyou molly, it gives me hope with what you have written. Sending you all my best wishes. Love Julie xxx

[Millie-c]

Hi Julie,

Keeping my fingers crossed for your results babe. Xx

Mandy,xx

[Juliette35]

Thanks mandy, just praying the tablets will have kicked in. Hope you are still keeping well, you have been through a lot. We are all battling this horrible disease, sending hugs. Julie xxx

[AnneSB]

Hi Juliette,

I have stage 4 high grade serous PPC. I was diagnosed Feb 2015. I had carboplatin (3 then the op followed by another 3 doses). That finished in July 2015. Since then I have been incredibly fortunate to be NED. My CA 125 ranges between 7 and 11, originally it was 894.

Good luck with your results today. It is such a worrying time whilst you wait for the results every few months. My fingers are crossed for you.

Anne xxx

[Juliette35 in reply to AnneSB]

Thanks anne, I found out in 2015. Had the chemo carboplatin /taxol for three like you then the op then another three. My ca125 was 2,700 and was told it was stage four. After my first lot of chemo I was admitted to hospital with a blocked bowel. My last chemo was nov. Had scan in Dec my ca125 had dropped to 19.was put on avastin but did not work for me was taken off that as my ca125 was rising again. Then put on calyx but that didn't work. He then put me on weekly taxol August last year. Last taxol was December last year, had scan in January this year was the it was Clear. Then in the may put me on tamoxifen tablets, last time I saw him was six weeks ago and ca125 had risen to 180. He told me to carry on with the tablets to give me a break with the chemo. So fingers crossed the tablets will have kicked in. So happy for you and hope that you will be ned for many years to come. Love and best wishes. Julie xxx

[AnneSB in reply to Juliette35]

Thank you for you kind wishes. I only had taxol once due to a pre existing heart condition - they thought I might have a heart attack! Because I only had carboplatin I couldn't have avastin. Luckily I have managed OK without it. Why, I have no idea, neither does my oncologist, but I am truly grateful.

Good luck and all my best wishes

Love Anne xx

[Naimish in reply to AnneSB]

Anne, you should be posting more often as you are an inspiration to.all.of us. With a single drug you have been doing the world and in complete remission. Brilliant. Your positivity needs to be emulated by us so please keep posting . We love happy stories.

Naimish

[Naimish]

Hi Julie, you have indeed endured quite a bit of this....so will not delve more into it. For information of past history, Gauri's cyto reductive surgery was done in Dec 2015 with Hipec followed by six rounds of Carboplatin and Paclitaxel, IV as well as IP (obsruction in small bowel after Chemo no.1). Gauri was in complete remission for a little over a year and then last month disaster struck again. CA 125 was 48 and Pet CT showed lesion of 1.5 cms in the liver. So, back to surgery ten days ago and liver was not malignant but the lesions were of TB! However, there was a fair bit of malignancy between the stomach and the spleen, cleaned up and she was packed up again. Now at home recuperating before starting chemo once again.

But Julie's question remains largely unanswered - any instances of PPC with long term remission ?

Naimish

[IrishMollyO]

Hi Naimish

Just reading of your wife's recent return to treatment it struck me that the stomach and spleen problem would not have been discovered if the liver lesion didn't have to be investigated . It may not feel like that this was a lucky break but I think everything happens for a reason and please God your wife will again respond well . I will be praying for her.

On the question of long remission what length of time of you consider a long remission ? I was happy that five years was pretty long considering some of the statistics you read. I may be wrong but there may be a good few long remission women out there who never even heard of this site. I don't know how you would find these but I like to think they are out there.

Your wife is very lucky to have a supportive husband who researches everything for her and leaves no stone unturned to make sure she gets the best of treatment. I wish you both all the best and I hope your wife responds well to treatment and gets a very long remission . Take care

XXX

[Naimish in reply to IrishMollyO]

Thank you so much Molly for your prayers. Yes indeed, the malignancy would not have been detected if not for the liver. CA 125 of 48 may have gone untreated for three months and would have blown back to 750 or so with worse repercussion. Silver lining if you may.

Yes Molly, five years of staying in complete remission is definitely long. God always keep it that way for you. I'm also informed that , generally a remission of 7 years indicates that the worst is behind you and the chances of recurrence are very few .

What I'm doing for Gauri is just what every partner should be doing esp after 40 years of staying together. It's nothing special esp when it's a genetic malady and not an acquired one.

Naimish

[Juliette35]

Aaaw thanks naimish, so sorry your wife had to have operation when she was doing so well. She will get through this, please give her my best wishes,. God bless. Julie xx

[Naimish in reply to Juliette35]

Thank you Julie for the wishes which I will definitely convey . All the best to you too.

Naimish

[Kryssy]

It's so encouraging to read so many positive replies. I'm hoping I can post one in the future. Start chemo tomorrow. I know I must sound like a numptie, but what is ppc? I'm still trying to learn the lingo here xx

[Juliette35 in reply to Kryssy]

Hi kryssy, ppc is primary peritoneal cancer. It's in the peritoneal which is the lining round your stomach. It's quite rare, but it's treated like ovarian cancer. You will find this forum very helpful, all the ladies on here are really great, I haven't looked at your profile so don't know what cancer you have, but I am presuming it's ovarian. Every one on here understands what we are going through. Wishing you good luck with your chemo tomorrow, make sure you get all the tablets they offer you for the after effects of the treatment. Love and virtual hugs, Julie xxx

[Kryssy]

Hi Juliette

Thank you for the heads up. I have the bugger in both ovaries, peritoneum, small tumours on the outside of my bowel and in three lymph sites, thorax, neck and underarm. Nothing in lungs or liver. Got a long journey ahead of me but may be able to answer your original question positively one day. Are you asking from personal experience?

Thank you also for your good wishes. Trying to sleep but it's not happening and have to be up by 6am. In a weird way I am excited to be starting the treatment at last. Crazy!

Nite nite xx

[Kryssy]

Edit that Juliette as just read your profile. Should have done that first. We have something in common then. We are rare creatures. Always the best! Xx

[Juliette35]

Night night, xxx

[Rlenesue]

I have been NED for 1 year. Had 2 scans and both clear.

[Juliette35 in reply to Rlenesue]

That's great news, thanks for getting in touch. 🙂. It makes me feel more hopeful. Though when I saw my oncologist yesterday he told me that my ca125 has risen to 290 six weeks ago it was 184.So its slowly rising again, he is going to put me in for a scan. I feel so down at the moment I was so hoping these tamoxifen tablets would work for me. Xx

[Kryssy in reply to Juliette35]

Hi Juliette.

How long do you have to wait for a scan in UK? Be strong and positive if you can. Everyone is sending good Karma.

Love and hugs.

Kryssy xx

[Rlenesue in reply to Juliette35]

Juliette, my Ca125 keeps rising, last count was 677 and the scans are clear. Apparently my count rises with no apparent reason. They are putting me on a PARP inhibitor to correct the mutation in the genetic code as I'm braca positive. When I first got diagnosed my c a125 was at 25,000. They stop counting at 25,000. Stage 3 ppc. I'm here today to show you its not all about the numbers and you will be fine just try not to stress.

[Juliette35 in reply to Rlenesue]

Thankyou rianesue, you have done brilliantly. Can I ask when you were diagnosed. It just goes to show that it's not just about the numbers. Love and hugs xx

[Juliette35 in reply to Rlenesue]

Just read your profile riensue, it said when you were diagnosed. Could you tell me what a parp inhibitor is. Thanks Julie xx

[Juliette35]

Hi kryssy, well my oncologist said about three weeks. How did you get on with the chemo yesterday, hopefully you didn't have too many side effects. Love and hugs xxx

[Julie40]

Julie I was diagnosed in March 2014 with stage 4 PPC and have been on different treatments and a parp inhibitor. Currently on 3rd line and due to start another parp when this chemo is finished. All in all I've had a great quality of life particularly for 17 months after my 2nd line treatment when I was on the trial for the parp inhibitor Rucaparib.

This 3rd line treatment has been tough but it seems to be working so just getting on with it. I try not to think of it's as a long remission and keep focused on managing it as my Onc said that it can be managed as any other chronic illness. This works for me and keeps me sane xo

[Juliette35 in reply to Julie40]

Thanks Julie, that's what I was told, to treat it as a chronic illness, so I am trying to do that. You have got the right attitude, I have just to keep the negative thoughts away. I go for another ct scan on the 12th of this month, so fingers will be crossed. Xx