Primary Peritoneal

Would love to talk to some Ladies who have been diagnosed with Primary Peritoneal please.

Is there anyone out there?

[Suzy]

Yes - I was diagnosed with primary peritoneal in January 2010. I am happy to answer any of your questions

[Hidden in reply to Suzy]

Hi Suzy,

Thank goodness theres more of us!

How are you doing? can you tell me your story please?

[Suzy]

Not very many of us ! PP is very rare - consequently it is frustratingly difficult to find any information or research about it and that also is why it is so difficult to diagnose.

I started to notice vague, minor symptoms as far back as February 2009. 4 hospital visits and 5 GP visits and 3 wrong diagnoses later, ultrasound revealed 5 litres of fluid in my abdomen (no wonder my clothes wouldn't fit !) A biopsy was done. I then finally got a diagnosis of cancer - initially for ovarian cancer in January 2010. I was admitted to hospital in February to have ovaries removed but when they did an exploratory they found that there was nothing wrong with my ovaries and the diagnosis was changed to stage 4 PP . I was told that it was much too dangerous to operate, that the tumour could not be surgically removed. I was offered chemotherapy but before then I needed to go back into hospital for a 2nd chest drain and they tried to do a pleuradhesif (a partial success )

Finally in March I started on chemotherapy (carboplatin ) The side effects turned out to much less than I had feared and the positive effects were immediate. My Ca 125 went down rapidly (from 3,600) but most importantly I stopped feeling terrible fatigue and got back to more normal energy levels. My last chemo was July 2010 Ca 125 had got back to 43 and I felt myself to be back to normal health and fitness and have continued doing all the things I would normally have done. Since then I have been regularly monitored by helpful consultant appointments and had blood tests every 4/6 weeks . The CA 125 has crept steadily up again and in May I felt the fatigue symptoms starting to come back again. I had a scan just over a week ago , which shows that the tumour has grown and the cancer is progressing again (but has not spread to any other organs) , so my consultant wants me to restart chemo no later than September. Fortunately I can have the same drug this 2nd time round.

And you .....how have things gone with you?

[Hidden in reply to Suzy]

Thanks for that Suzy,

Well 2008 I had the same as you didnt feel right, tired, weak etc.also felt like I had a balloon under the right side under my ribs! this went on till 2009 when they did a CA125 and found my count was 450! by then my tummy was getting bigger! went to have examinations, told to go on holiday by then count was 470! so we went and the second week there I collapsed! my hands were on fire (the palms) dont know if you had that one? and the soles of my feet as well!.

Came home and went back to work (dont know how) but got worse, and could not breath! that was a Thurs on the Fri we had a hosp app and they kept me in and did a tummy drain, what an experience that was! but felt great again when they had done it. My oxygen levels were bad so in for three days, by then they had found cancer in the fluid, had a CT scan and nothing there ! so it was 6 months of Carboplatin finished that in 2009 Nov. I have been in remission for coming up to 20 months now! The scans have shown nothing, so I now go every three months and have a CA125 and bloods done, and every six months for an Ultrasound.

SO FAR SO GOOD, as they say, they are on about if my bloods are still ok Sept they will put me on a six monthly visit (didnt know they did that).

Are we just the "Three of us" on Healthunlocked, there is also Scardycat40 who has this one!

I lost my Mom to Ovarian 17yrd ago, so I would have thought I would have got that one! just goes to show!

Can I ask how old you are?

Thanks for the contact, please keep in touch if you dont mind, its a great help having someone else with the same.

[bosue in reply to Hidden]

great to hear this, as I start my chemo 3rd August for the same, everything you read has a bleak outcome, so really pleased to read your comments, thanks

[ScardyCat40 in reply to Suzy]

Hi Suzy,

I have PPC but my diagnosis was complicated as I also had borderline cancer in my ovaries. I've had my tummy drained once and my chest drained once but the build up of fluid has been relatively slowly. I've just had a debulking operation. Can I ask why you were stage 4?

[Suzy]

No .... not had that problem with palms and soles - not heard of that one . You seem to have lasted a good long time in remission. My ca 125 is now 1,600 - hence needing to go back on chemo. I am 64 by the way . I don't know of anyone else on ovacome with PP. I will keep in touch .

[Hidden in reply to Suzy]

Thanks Suzy.

I am 64 the end of this month to. My count has been 14 for 6 months, but lasts weeks visit it had gone up to 18. It was 3,000 when they drained me!

Take care,

[Suzy]

Sounds like a Beatles song . Seems you are post war baby, indeed a demob baby same as me . What did your dad do during the war? Mine was in the RAF working on radar in the latter part of the war - when they had little idea of the dangers of radiation. He tells me that the microwave oven they developped would be run sometimes when the door was open ............... so I have sometimes wondered if that could have had any effect on me..

A CA of 18 sounds very good. Medics don't start to worry until it is at least 43 - so you are well within the normal range.

[Hidden in reply to Suzy]

Luv the Beatles lol .Mine was in the Army RAOC, Fitness Instructor,

My Brother-in-Law would never have a microwave oven in the house!

Do you go "PING" then when you walk passed anything electrical? LOL.

The one Oncol said they would not worry till I got to the same as the last time 450-500 !! Thats a worry for me !!

Im sorry that you are having to go back on the chemo again, but from what I have read on line (and thats loads) this can go on for years, so we just have to bite the bit I think and hang on in there. How are you coping with it all? do you keep busy etc?

[Suzy in reply to Hidden]

I keep very busy - especially looking after very large and high maintenance garden. I do as much travelling as I can afford

[hereshoping]

Hi there, I have PPC also.I was diagnosed with OC August 2010. My CA125s were 1800 and my first symptom that I was aware of was a feeling of fullness or stitch when I went to do a particular jumping twisting exercise at Curves. Only when I did the twisting. Two days later same thing happened again. Next night at work I asked one of our Docs if I could be a bit bloated with perhaps a hernia. Next night at work I had to go up to the fifth floor to take some medication up to a ward and when I got up the stairs I could hardly breathe which was really weird as I was the fittest I had been in years, training for the half marathon walk and had just got back from 3 weeks in Perth on holiday where my husband and I were walking all over the place for miles. Went to my Doc on the Monday as I was still bloating and she ordered and ultrasound. While waiting for this I got bigger and bigger and finally looked about 9 months pregnant. I have never been so uncomfortable or frustrated in my life. I knew ascites was one of the first signs of ovarian cancer but because I wasn't sure if it was that there was still doubt. As soon as I had my ultrasound nearly two weeks later it was back to my GP for results which said I was full of free fluid, bloods were taken then the next morning it was into the hospital and the big adventure began. 200mls of fluid drained initally for testing, scan, 3 days in hosp, scan showed a mass where my l/ovary should have been, a nodule behind my sternum, possible peritineal seeding under my diaphragm and the fluid was full of cancer cells. They drained 4 litres off me the day before I went home and I had some sleep finally. 10 days later another 4 litres and 10 days later another 4. Next day started carbo/taxol every 3 wks for 4 rounds then had debulking surgery at end of November. I had already had a hysterectomy in 91 but still had my ovaries. Lymph nodes were clear but the pathology said the bulk of the cancer was in my omentum and diagnosed me with PPC. My Oncology Doc said they treat it the same as OC. On New Years Eve day I had my 5th round of chemo and on Jan 20th my 6th. Had my first O/P appt with the Oncology Doc from out of town in March and my CA125s were down to 29. Had my first 3 month appt with him on June 16th and they were back up to 173. Had a scan last week and there are no new measureable markers but have to see him on 27th of July instead of waiting 3 months as normal. Will wait and see what he says. They will probably just monitor me closely until I feel unwell. Have a few niggles here and there that I probably wouldn't have worried about before diagnosis. I must say that my ascites never returned after I started chemo and it all went pretty well even recovering from the surgery. The hardest thing I found was not being able to do much for the recovery time. Nearly went nuts and got pretty low which was the first time I had felt like that. Have been working all the way through even with my giant tummy which the nurses at work thought looked pretty cool on a 57 yr old. I certainly got some strange looks. I work as an Enrolled Nurse/Receptionist in the Emergency Dept. They were really accommodating and allowed me to do admin work out of the way of patients. It is a curse to think this is here and that 5 years could be all I have as a Stage IV but you never know whats around the corner. Nearly 1 year down and I am still standing and feeling ok. A little heavier than this time last year but alive. I wish you all the best and sorry that I have rambled on and on. I agree, hard to find many with this particular ca. I am treating it as a chronic illness that can be controlled and getting on with my life. It is hard to get out of your head though, do you agree. Chris

[Suzy in reply to hereshoping]

yes I totally agree with your last 2 sentences and no you did not "ramble on " Those few of us who have PPC can find so few opportunities to find information or share experiences.

As regards getting it out of my head ......i find that I need to do as many interesting and fun activities as possible and always make sure I have something good to look forward to . My view is that the shorter your predicted lifespan the more precious each day becomes so I have to make sure that I waste no time fretting or worrying . Yes that does take a bit of management ! I found a nice quote the other day (don't know who from )

"Live every day as if it is your last ....and garden as if you are going to live forever "

Suzy

[Hidden in reply to Suzy]

Thats a good saying Suzy will save that one.

We do the same as you, love to garden we are in it as much as possible if the weather permits. This is driving me "Nuts" with all this rain.

We love to travel as much as we can as well.

[Hidden in reply to hereshoping]

Hi Hereshoping.

Yeh! Another survivor great to meet you, thats four of us now.

Yes your right the thoughts just keep on coming dont they, s0 its keep busy as much as possible. Please feel free to ramble on anytime you want to and keep in touch.

[hereshoping]

I keep busy and half an acre here in Taranaki NZ to garden, two boxer dogs to enjoy, two chooks who I love, reading, knitting, BAKING, the staff at work like my admin day as they get spoilt, grandsons and a lovely husband and friends. Must admit though, even when I am gardening the thoughts are in my head, "Ihave cancer", not stressing me, just there all the time. Have volunteered for respite work in the community for our local Hospice so will be good to intereact with someone worse off. When I was at my first Oncologists appt just after diagnosis and she told me I was a stage III possibly IV with the nodule behind my sternum and that the outcome for stage IIIs or less is to be either in remission or cancer free in 5 years but Stage IVs are harder to treat I thought, wow, thats good news. Cannot imagine what it must be like to be told you have 6 months etc. And, another good tonic, I have never stopped laughing. Even having cancer has its amusing moments during treatment. Well I find them anyway. Hope that doesn't sound terrible but its being real. I tell everyone when they ask me if I am scared, no, I will not waste my energy being scared when that emotion won't change anything. Am on the rollercoast and can't get off so may as well enjoy life while I can. I love your quote and here is one that I found last year in a NZ Cancer Society Newsletter. A cancer diagnosis doesn't make life uncertain; it merely reminds us of what has always been the case. So true. So good sharing with you ladies. Bye for now. Chris.

[Suzy in reply to hereshoping]

a great quote - needs to be kept in mind

[hereshoping]

Just reread and sorry about the spelling. Type too fast for my own good and forget the end of words. Thats my excuse and I am sticking to it.

[Hidden]

Hi Hereshoping,

WOW love your positive attitude to life, I do try but fall down every now and then! We have a dog, hes an old aged pensioner now like us LOL.

This is a nice saying "Turn your face to the sun and your shadows fall behind you"

Hope your having a lovely weekend.

[ScardyCat40]

I met with the consultant registrar this morning and she confirmed that because they found cancer cells in my chest I have stage 4 cancer. However they still can't confirm if the origin is ovarian or peritoneal so I've been told to ask the oncologist on Thursday.

[Hidden in reply to ScardyCat40]

Hi Scardycat40.

Oh this waiting game!!

Let me know what they say to you on Thursday please.

Hope your feeling a bit better after your op.

[LucyJ]

Hello there. I have recently been diagnosed with peritoneal cancer and start my chemo on Wednesday of this week. Not looking forward to it - the taxol and carboplatin. Have had to be referred from my local hospital to a nearby city hospital and am out of my 'comfort zone'. I know I should just take things as they come. I am 62 years old. I have been reading comments on this site with interest and admiration for the way people are dealing with their situation. It does give me more confidence and hope for the future.

Best wishes to all.

[bosue in reply to LucyJ]

ditto I start carboplatin on 3rd August, like you i'm 62 I have just found this site and has made me more positive about everything, and think everyone is great with their support. will certainly keep in touch, let me know how you get on

[Hidden]

Hello LucyJ.

Welcome to the "Club" LOL.

Good Luck with your chemo on Wednesday, I didnt find it to bad so try not to worry to much if you can, I only had the carboplatin chose not to do the Taxol.

Im now nearly 20 months into remission (long may it last).

If you need to "Ramble" like the rest of us please feel free, and any help we can give you we will ok.

Keep in touch with us. Take Care.

[ScardyCat40 in reply to Hidden]

That's interesting Kefi I will be having this discussion on Thursday again ( I had a similar conversation after my original diagnosis down in Winchester). I'm thinking about not having taxol can I ask why you chose only to have carboplatin?

[bosue in reply to Hidden]

i'm due to start carboplatin on 3rd august, getting nervous, how were your side effects ?

[Hidden in reply to bosue]

Hi Bosue.

I only had Carboplatin and didnt find it that bad, the first one didnt do a lot and it was hard to believe I was on chemo!

Then the rest just made me tired for about 3/4 days, after that I was up and about doing the "normal" things we do, going out and about etc. So try not to worry to much if you can, just let it take its course and go with it, dont push yourself if you feel tired then rest up till you feel better.

Wishing you the best for when you start your chemo, keep in touch with us please and we will all help you.

[bosue in reply to Hidden]

thanks for that, so pleased macmillan put me onto this site,dont feel so alone with my worries, i feel more positive now. thanks

[bosue in reply to Hidden]

Hi Kefi, hope my message got to you, how was chemo after the 1st one ? and did they just say Carboplatin as they did to me, and to keep the other in reserve if needed (cant remember what its called, but come from yew trees) ?

Bosue

[bentleysmom]

I am in my sixth year of survival from PPC. I had a debulking surgery and two full rounds of chemo. Then a "look see" surgery at John Hopkins. Just wanted you to know someone is out there with great success. My first chemo was done with IV, my second was IP.(directly into the site.) So I know what every side affect is, and every day to day symptom you probably have and are going through.

AND YOU will be okay!!!!

Things they have learned since 2006 can only be more on your side.The best doctors and hospitals are a MUST . Thanks to my daughter, the best advocate anyone could have, I had those. The best advise I ever got ,was from an angel (nurse). She said never ever let your head go to that "dark place". Stay positive and calm. Pray.

Push yourself when you can. Rest when you need it. Know you are LOVED, if only by these few people that have shared your same journey.

[Hidden]

Hi bentleysmom,

Welcome from all of us. Great to hear that you have survived for 6yrs.

Where is the John Hopkins? so you are still in remission then??

Thanks for the advice, think we all try but have days when we slip up.

Are you still having 3 monthly check-ups and ultrasounds done?

Keep in touch with us please.

[bentleysmom in reply to Hidden]

John Hopkins is in Baltimore,Maryland.I had the de-bulking surgery at Hershey Medical, in Hershey Pa. I've learned so much, it would take me a week to communicate it all.I mentioned the 1st two very important things to learn. I do not go for any more than two MRI'S a year. Please be careful how many CT scans you get ,and Ulta Sounds. (radiation), I realize how very important they are, and out weigh the risks. But please suggest to your health care providers, that you prefer an MRI and blood work. ( any symptoms at all--it goes without saying). MRI'S show a much more detailed picture.

I know you've all heard the research on keeping that good attitude and never loose faith. I'm truly convinced ,it cures more than any medicine ever could. We all have such a rare cancer, I used to get so tired of trying to explain to my friends and family, what Primary Peritoneal was.Thanks to this blog we all understand and can share any information we have. I didn't have this back then.

When I wasn't too sick, I would get out on the patio and watch my birds. I surrounded myself with pictures of baby's and baby animals. I listened to sound of nature CD's.(with a good set of ear buds). I watched videos of National Parks, Amazing places to see in America. I took naps, so I could just walk a little further than I did the day before.

Okay now I'm babbling... Your getting the idea. Right? Oh, and I did e-mail anyone one that would listen. Don't remember much of that, but I know it helped me to talk about it...sometimes...not all the time.

And yeah every time I get an ache or pain...it frightens me. I guess it will always haunt me. But I don't tell anyone.

It's just between us. shhhhhhhhhh! I am well, and you will be too.

[Hidden in reply to bentleysmom]

Read your post and would like to know how you are doing. I can relate to aches and pains playing mind games with us.

[Hidden]

Hi Bosue,

1st chemo was fine, didnt really have any effects as such, a bit tired but nothing else, felt normal (if thats possible) LOL.

I chose just to have the carboplatin myself. Are you on about the taxol??

[bosue in reply to Hidden]

I feel fine after lst chemo, let me know how your went on, and the worst you felt. ? my oncologist wants to keep taxol as a back up.

[bentleysmom]

I had both taxol and carboplatin. I worked during my first two treatments. But felt very very weird and tired. As most work places, there was only so much time I could take off. I did well, because I took that anti-nausea medicine. I developed some strange side affects. Itching, pain in my legs, ect. But there was always another med to help me through anything. You just have ask for what you need. And their great about giving them to you. Sorry, I got carried away before. I think I scared everyone off. I will check back every so often. I'll pray for everyone. And I'm not all that about religion. But I'm extremely spiritual. I lost my Mom, (who took care of me the whole time I was sick), and my Golden Retriever, (who laid by my side through it all,)

within two weeks of each other. They both died of cancer.

[Hidden]

Hi bentleysmom.

You did very well after your chemo still working, I decided to retire when I started mine. You have not scared anyone off, so dont worry about that one.

So sorry about the loss of your mom and your Golden Retriever, we used to have a Gordon Setter, he was the love of my life, he to died of cancer and so did my mom.

Take care.

[23lag]

Hi I to was diagnosed ppc in 2010 at 59 debaulking then chemo.In remission for two half years.Came back on chemo and Avastin.now just avastin.But ca125 creeping up now120.sorry not really a good e mailer. Best wishes.

[Hidden]

Yes I had it. Gone for now after surgery and chemotherapy. I was stage 3. I'm 58 years old. They say that if it comes back it will be the peritoneal cancer again. Your post was 4 years ago. I would love to hear how you are doing.