Primary peritoneal cancer

[Gvaadt]

I was just diagnosed with this type of cancer, primary peritoneal cancer, which I am told by gyn oncologist is treated the same as oc. I noticed symptoms due to having fluid in abdomen, had a CT scan. Oncologist has me starting 9 weeks of chemo, carbon/pacitaxel (think that is the sp) then a hysterectomy and then 9 more weeks of chemo. I am soooo scared. I am wondering if anyone on here has any similar experience with this type of cancer or words of encouragement to make this any easier. She said this is a rare one. I love reading posts on this site....just got brave enough to add this now. And yes my CA125 was way elevated, scarily so. Thank you for any comments in advance.

[Katmal-UK]

Hi I was diagnosed in 2007 with stage 3 OC. Yes it is a scary time and I can imagine how you are feeling at the moment. Sending you a big hug. I am sure there will be ladies along shortly who have or have had your diagnosis. One bit of advice I do want to give to you is stay off the internet. Don't google statistics etc as the internet cannot tell you what will happen to you and if you feel scared now some of the information will only compound how you feel. You are unique and the statistics are just that statistics. As you can see after 9 years, despite two recurrences I am here, working full time and currently NED (no evidence of disease). The op sounds scary because it's fear of the unknown but trust me please when I say it is not as bad as you are fearing (here speaks a wimp). The chemo can be rough but you can and will get through it (I've had chemo 3 times). We are here on this site to answer your questions if we can or just listen to a rant if you feel like one. We've been there, done that, got the t-shirt. Take care and feel free to ask questions (regardless of what they are). Kathy xxx

[Gvaadt in reply to Katmal-UK]

Thank you Kathy for answering my posts. You don't know how good it makes me feel to connect to someone who has gone through these fears. I know the internet is addicting, one topic leads to the next, and eventually I hit the worst case scenarios. This is just such a shock for me. I have always been healthy and active. The symptoms came on quickly for me. We had a 2 week vacation in Maui and I was just enjoying life....wearing bathing suit every day and no sign of hard swollen stomach. Returned Oct 5th and about a week later noticed feeling tired, stomach hardness and then had the CT scan. My gen dr kept saying you are probably just constipated and pulled a stomach muscle. I kept bugging him until he said well we can do a CT. Long story short....all downhill from there. All scarey. They found a 2.4 cm lesion on my ovary, but oncologist said it is the peritoneal cancer due to the fluid. Did you have the ascites? I had it drained, but some still there. Thank you again for your reply. It really does help to not feel so alone. I have lots of support, but not sure anyone really understands, they are all scared too.

[Katmal-UK in reply to Gvaadt]

Hi. Yes I had ascites but to be honest wasnt really aware of it because I had no symptoms. I was told after my op that they had drained off 2 litres. Ive always been quite big (size 16) so maybe this was why I didnt notice lol. You will get through this, stay positive. xxx Kathy xxx

[Gvaadt in reply to Katmal-UK]

Thank you so. U h for your support! I appreciate having you as a new friend. Vicki 😊

[Gvaadt in reply to Gvaadt]

Meant to say so much!

[Jessica-DianeB in reply to Gvaadt]

Hi!

I've just been diagnosed also with PPC stage 4 .

Similar diagnosis route to you.

It's been 7 weeks for me and the shock of the diagnosis along with my prognosis knocked me greatly.

However as times gone on I'm realising, I'm here! I am living with this disease and I long to for many years!

Take each day, avoid googling, unless ones recommended by your CNS. Ask questions at your clinic visits no matter how silly they may seem.

I'm heading for my 3rd chemo on Tuesday & had my meeting with debulking surgeon yesterday.

Hope you find much help from this forum.

Jess xx

[Gvaadt in reply to Jessica-DianeB]

Jess, thank you for your reply. Keep me posted on how you are doing with your chemo and debulking. Sounds close to my diagnosis/treatment. I have a phone appt today to set up my chemo. I can't wait to start. I feel like there are all these little bad things circling around my abdomen right now getting worse by the hour. Did you ever feel like this? I know sounds stupid but my stomach being uncomfortable makes me imagine wierd feelings. Just scared. My ca125 was high so that is scary to me too. The big unknown. What chemo are you having and how are the affects so far? Can you function and do things or are you just tired? How long are you at the chemo session, do you read or listen to book tapes or anything to make it pass quickly? I am going to get carboplaton and pacitaxel. Hoping yours is going smoothly and happy to be able to be a support to you. Message me anytime you need to talk. Hugs, Vicki

[Jessica-DianeB in reply to Gvaadt]

Hi Vicki.

I felt exactly the same, I hated knowing what was going on inside my tummy. I've felt better since the Asities has absorbed.

I started on the same chemo as you are scheduled for.

I unfortunately for a urine infection 1st round and anaphylaxis the 2nd. But other than that my sickness is controlled brilliantly. I just have 3 days where I feel a bit numb, shaky and generally 'off'

The steroids keep my appetite going which is so important! You will get these alongside your chemo.

I wore the cold cap but it's resulted in headaches & sinus pain so I'm ditching that now.

I actually felt better once treatment started, in control of things moving forward. My first 6 weeks were just a blur. ( I didn't start chemo for a month)

Do let me know how your 1st round goes.

All the very best xxx

[Natacha77 in reply to Jessica-DianeB]

Dear Jessica

My special person in my life was diagnosed with ppc stage 3. It's a very rare cancer but it can be treated. The dr says it can't be cured but like so many other chronic diseases people can learn to live with it and treat it..

Her symptoms came within a 2 month period.slowly then getting much worse. She had a swollen abdomen that became hard and tender..nausea..decreased appetite...she had difficulty going to the washroom...and eventually a significant amount of pain in certain areas of her abdomen. She had a ca125 which was very elevated along with scopes..scans..ultra sounds..it was the ct scan the alerted the Dr's of the mass. The mass was in the upper left area of her peritoneum and was approximately 10cm long.

Her oncologist told her that without chemo she would have 3 months to live...but with chemo he said it could be years..it all depends on how she responds to it. Everyone is an individual..

She responded well...and was on carbo/ taxal? Sorry I'm unsure of the spelling. She would get chemo once a week and continued to get it for 5 months. During this time she had bloodwork once a week for the chemo and also had follow up CT scans as well as ca125 markers along the way to monitor the progress of the chemo. Half way through treatment tgere were no signs of her mass and the ca125 was within nkrmal range! She did end up losing her hair after the third bout of chemo..it began falling out in clumps but rather than waiting she shaved the rest off and looked beautiful! She also said it felt so much better...she also received many blood transfusions along the way due to the chemo ..but she's still here and she's a fighter! She's the strongest...bravest woman I know.

Since completing her chemo last year she has had CT follow up scans every 2 to 3 months as well as ca125 bloodwork. She will have CT scans and bloodwork the rest of her life to monitor any changes.

None of us are promised tomorrow.....live....just live every day .....that's what she says... and listen to your body. If your body is tired then sleep...even if it's the middle of the day. Your body heals with rest. She also looked into other natural healing medications as well..and chose to pair them with her chemo..she continues to take the natural medication....

I pray for all of you on this site. You are all fighters and braver than you probably would ever give yourselves credit for...

God bless you all

Maria

💜

[Chamber]

Hi

I was diagnosed with ppc stage 4 may 2015.

I'm 63 , married with 4 daughters and 7 grandchildren. Like you I was very fit and I thought healthy.

I was admitted with an acute bowel obstruction and ascites. The symptoms were sudden.

I had 8 treatments of carbo/taxol , a debulking operation, followed by 3 weekly treatments of avastin. (17 treatments)I am currently on a watch and wait.

The chemo and operation weren't as bad as I thought. I rested when I needed to, and took exercise as much as possible.

I try to keep as positive as possible, and I agree with Kathy about googling. Just don't do it.!

Wishing you lots of luck and positive vibes

Judy xxx

[Gillybean70]

Hi!!!.. I'm also new to this site, & I've just posted if you would like to read what i have put. I was diagnosed with peritoneal in September last year (stage 4C)

I would be happy to answer any questions you have. x

[Annr5h]

I was in hospital with a lady who also had your type of cancer, we had our hysrectomy at the same time. She did really well had her chemo first then her op, now on Avestin 3 weekly. I also know another lady that had it too, so it's not that rare. Good luck with your treatment xx

[Gvaadt in reply to Annr5h]

Thank you for replying. I am scared but it sure helps to be able to connect with everyone on here.

[Caroles1]

Hi Gvaadt,

I was in Singapore when I first had symptoms!,on my return was constantly tired,sick and lost a lot of weight,but all of a sudden looked like 6 months pregnant.

It was ascites big time and was drained over a week, followed by total hysterectomy and 6 months chemo,carbo/taxol.

This finished March 2015 and so far NED,it's do able, don't be scared,we have all been there,hope that helps,

Lots of love,

Carole xxx

[Gvaadt in reply to Caroles1]

Totally helpd! My goal is to stay positive. Having people to chat with help a lot. Vicki😊

[Caroles1]

Glad it did Vicki,

Good luck with your journey and let us know how you get on

Carole xx

[Julie40]

Hi. I have this type of cancer too. If you have a look at my profile you will see my history. You are not alone there are quite a few of us on here with positive stories.

Avoid looking for information on the internet best sticking to this site or asking your Oncologist xo

[AlisonBoyd]

Hi, I also have PPC, diagnosed April 2015. Had chemo then debulking operation then more chemo, over a 9 month period. I'd never had to go to hospital before, so it was all a very new experience. Although I'm not 'cancer-free' now, my condition is stable and I'm, back at work part-time and feel well. Although the treatment was no fun, I was grateful there was something that could be done, and hope that your treatment goes as well as it possibly can.

[coalole]

I was diagnosed in February 2016 with the same symptoms and the same regime of treatment. I signed up for the ICON8B trial which means I have a questionnaire to complete before chemo too.

It is scary but the nurses who give the treatment are very supportive and cheery.

Wishing you well over the coming months.

Diane

[Emalou71]

hi there, I too have PPC you'll see my story on my profile, please do ask away any Qs you may have. I have been using this site since my diagnosis and it's amazing the support you get here from wonderful people.

All the best x

[ellseybellsey]

Hi I was diagnosed Easter 2016 with ppc stage 3c, I had three carbo / taxol full debulking surgery and further three chemo, I am currently NED, although I was told prior to my first chemo I would go on Avastin for 18 months due to the spread to other organs.

My response to chemo was so good my ca125 went from 1259 to 15 they decided I could have surgery, just had my first checkup my ca125 is 19 and my scan was all clear.

It is a very frightening time especially when you have never heard of ppc before the diagnosis ,but their are lots of ladies and family members who have been through this and I found the support from this site helped me through every step of my treatment as they treat it the same as OC, so lots of support. Ive never felt alone on this scary journey.

Virtual hugs Ellsey xx

[Gvaadt in reply to ellseybellsey]

Thank you Ellsey. I meet with chemo Dr this Tuesday. I am scared but looking forward to a start date. The fluid on my abdomen is getting worse and it is so uncomfortable trying to sit, stand or lay flat. If it wasn't for that feeling the wait might not be so bad. I had it drained a week ago but it seems to be coming back. Did you or anyone else on here experience this? Do you have any suggestions to either relieve it or help it disappear? I was told the Chemo would dry it up and I would feel better. Not sure how soon after the consult I will start chemo which worries me as it it seems worse each day. Thanksgiving is this Thursday so I am fearing it won't be started before. Any suggestions would be so appreciated. If I could just sleep until my chemo date!!

Hugs to you!

[ellseybellsey in reply to Gvaadt]

Hi I had my fluid drained off twice before I started chemo, once my treatment started I didn't get anymore. My sister inlaw who is a senior theatre nurse told me to lay flat as much as possible to help the Peritoneam fluid drain, it helped a little but I would be bloated a couple of hours later.

Keep us updated with your progress, sending you virtual hugs.

Ellsey xx

[Juliette35]

Hi I was diagnosed with ppc last year stage four. it came as a huge shock as I have always been quite fit and healthy. I was on carbon /like taxol. I had three weekly sessions of chemo for three month then had what they call a debulking op. in hospital for four days. Then finished off with another three sessions of chemo. I am now on weekly taxol and finish this Dec 9th

Writing this while I am having chemo.

you will find lots of support on this site, like you say it is very rare form of the c word. Sending you big hugs. Julie xxx

[Gvaadt in reply to Juliette35]

Thank you for sharing with me. This site has been an amazing help to me. It has all happened so fast. My spirits will be up and then something makes me sad and I fall apart.....being able to let my feelings out on here really helps. Meeting some wonderful new friends. I am still new at this site, so learning how to get around on it. I have a phone consult this morning to set up my chemo treatments so am nervous to make this seem even more real. The hardest part for me was telling my kids and then grandkids. I don't want them to be scared, but cancer is such a scary, scary word. They are wonderful and supportive so that makes me feel so good. Hugs Xoom vicki

[Juliette35 in reply to Gvaadt]

Hope your consultation went well. I was worried about having chemo but it's not Really been too bad. Make sure you get your chemo team to give you sickness tablets, though I have not had bad sickness. my skin as gone very dry with this taxol so was told to use e45 cream. like you it was horrible having to tell my kids and then the older gran kids. We have our youngest grandchild staying tonight. Josh who is six, having them keeps my mind off this horrible disease. just want to say chemo went OK today, but will probably be up half the night due to the steroids I have before chemo. one night I was going mad clearing all my cupboard's out, then tomorrow I will feel like I have loads of energy. On Sunday my energy levels will go down so I just pace myself. You have a loving family which helps a lot. You will probably think this strange but in some way's I am dreading when the chemo ends, I will miss the support and I think some of the ladies on here have said the same

Also I will be having a scan when this finishes in December so am praying that this taxol as done it's job. keep in touch .big hugs Julie xxx

[Juliette35]

If you look at my profile will tell you more about what treatment I had. xxx

[TL2018]

My mum was diagnosed with PPC stage 3 in 2015. I had been reading posts of survivors and their treatment journeys. She had chemo, surgery and chemo and then relapse in less than 6 months from there. Towards the end of last year 2017, the disease progressed so aggressively that she had to do a colostomy bag surgery as the disease had obstructed her bowel. The doctor started her on PARP inhibitor by AZN. She did not respond well to the drug even though she was tested to carry a BRCA 2. Before July 2017, she was still up and about doing exercises and even travelling overseas on holiday. I am sad as I lost her 2 weeks ago to PPC. She was so brave. so brave. I hope for the best for all here and wish you strength and courage.

[AimeeS1987 in reply to TL2018]

My mum has peritoneal cancer that was diagnosed in April 2015 and she has had loads of treatment and she’s currently on a break from her chemo. Me and my mum both carry the BRACA 2 gene also. Last night, she collapsed while she was on her own and could not stop vomiting meaning she called herself an ambulance and went to hospital in the early hours without anyone knowing!!. She has bowel obstruction which they are trying to treat with laxatives and antisickness, if they push it too hard there’s a possibility the bowel will split so they are being very careful. I think your so strong for putting this on here and your mum sounds like an amazing lady! I am sorry for your loss, your story is the only one I can relate to at the minute that (in the nicest easy possible) is nice to read.

Aimee

Xxxx

[Jorja]

Hi,I was diagnosed in 2008 with PPC, had surgery and started 6 rounds of chemo same week, Dr told me she got all she could see and chemo was a back up, I was ok for 15months , then CA125 elevated, had 6 rounds of chemo again, (carboplatin and paclitaxil) both times, then went 4 years same again CA125 elevated, this time changed chemo drug from Paclitaxil to a different one, forgotten what it was, but did not lose hair this time,

.Went another 3 years and scan showed 2 small lesions on outside of small bowel, this time put me on tablets, Tamoxifen which is for breast cancer but apparently very good at keeping tumours at bay,had scans and they have not grown, been on this for just over a year, I have always been a very positive person and deal with things as I come upon them, I have never let this desease take over my life, I still do everything I used to do, I hope you have lots of support, my husband is the best, plus my 2 daughters. Try to keep positive, I am going into my 11th year now, so anything is possible, one thing I will tell you, carbo and Paclitaxil can make you very constipated, I took something day before my chemo to make sure I stayed soft, didn't the first time, and I knew about it, talk to your chemo nurse, she should be able to help you, I was lucky, never got nauseus but my legs were painful for about 3 days after chemo, also found 3rd day after chemo food tasted a bit yucky, but this was only for 1 day, hope you get through it ok.