Primary peritoneal cancer

[Ange09062016]

Hi, I was just diagnosed with primary peritoneal cancer stage 3c. I'm 32 years old and have never had health issues. I was pregnant and had a c section and that is when they saw all the tumors. My baby and c section have saved me. I have had symptoms but since I was pregnant everyone just thought it was because of that, pelvic pressure etc.. I start chemo on Tuesday and I'm just looking for positive people and stories. I have a newborn baby and 2 days later I was diagnosed. It has been very rough. If anyone can relate or help please respond. I can also be reached at [e-mail]

[Microbabe]

What a shock it must have been for you... I think OC is often discovered through another route as GP often don't recognise the symptoms... I think your totally on the right path being positive... It can be a rough ride but chemo affects us all differently... I try to see the good in every situation I haven't had to shave my legs in weeks lol... There are some amazing ladies on this site that are a fountain of knowledge and wonderful inspiration ... Big hugs and good luck with your treatment 😍

[Ange09062016 in reply to Microbabe]

Thank you for your response. I like your thoughts about the shaving if your legs. Appreciate the well wishes

[tanyanpc]

Hi,

I was recently diagnosed with advanced clear cell carcinoma during elective c section. I am 39 y.o. I am tolerating chemo well and feeling OK at the moment. I don't pity myself anymore, but I constantly worry about my kids and my partner and their future. It was really rough after the diagnoses. It got somewhat easier after the beginning of the treatment. I also read every day to understand my disease better and what I can do to improve my chances of survival. One day at a time. You will feel better too after the initial shock. Good luck!

[Ange09062016 in reply to tanyanpc]

Yes, I worry about my husband and newborn baby too. She will keep me strong because I have to be here for her. I'm still in a daze going through this. I'm recovering from the c section and now dealing with this. Thank you for our response. I'm sending you positive thoughts also during your treatment.

[Gleedy]

How shocking for you but hope my story is encouraging. I have PPC. Had four rounds of chemo. Surgery and then two more rounds of chemo. I have a drug called avastin till next may being given every 3 weeks. I had a lot of disease and at one point surgery was going to be very drastic but chemo did it's work and shrunk the tumors. I'm awaiting my final scan but all indications are I'm disease free. It's been a journey but im determined to enjoy life. It can be done. Keep positive and enjoy being mum. Xx I wish you the best of luck x

[Ange09062016 in reply to Gleedy]

Wow... Yes very encouraging. I have been told that mine is very spread out and surgery first would be too intensive. Best of luck and please let me know your great I powering results when they come.

[Yoshbosh]

Oh my goodness. That must have been such a shock for you. I don't really know what to say, but thank god you are on a treatment path now, and I hope you, your new baby, and family are all doing as well as can be expected under the circumstances.

I'm just a few years older than you, at 38, and I have two young daughters (7&4). I have stage 3 ovarian cancer, and treatment has been going well so far. Similar to Gleedy, I have had chemo and surgery and fingers crossed I will also be disease free after my final scan in a few weeks time.

Chemo feels really scary, but once you start it, it isn't as bad as you might expect. I think I have been relatively lucky, but I haven't had much nausea or anything like that. Hair loss is a big part of it, and before my lovey shoulder length hair fell out, I had it chopped into a short crop, which was then far less traumatic for my husband to shave off when it started to fall out. I actually love all my hats and scarves now, and I have a fab wig.

We're a lovely community here - you've found the right place. Ask any questions, have a rant, don't worry about feeling frightened, we've all been there or are going through the same emotions.

xxx

[Ange09062016 in reply to Yoshbosh]

Thank you for your kind words. That is a good idea about the hair since it have long hair also. Hoping to hear you great news soon!

[HogwartsDK]

Hello Ange,

First of all congratulations on the birth of your baby, you are having a hard time at the min but as you said your baby saved your life!

Chemo is daunting and it's not easy but as YoshBosh said i too found that it wasn't as bad as I thought it would be once I had started! Take each day as it comes and keep a note of how you feel after each treatment that will give you an idea of what to expect each time. Drink loads of water and talk to the chemo nurses about all symptoms they can often help by changing Meds etc! You have found a great place for advice and support this forum was my saviour when I was having treatment so keep in touch!

Wishing you the very best with your treatment. Be good to yourself and allow yourself bad days they make the good days even better and there will be plenty of them too!

Take Care

Dx

[Ange09062016 in reply to HogwartsDK]

Thank you for making me feel better about the chemo process. Appreciate the well wishes.

[85live4ev]

Hi Ange, you would of thought all the checks given while pregnant would of picked something up.

There are lots of positive stoties on here which have really helped me when I have not felt as positive as I should.

I found reading up everything I could about the cancer I have has kept me in control thats the way I am dealing with it. I have also looked up all kinds of web sites from DNA healing music, how to heal yourself in 15 days, foods that fight cancer & lots of health web sites. The wounderful ladies on here have given me lots of great ideas.

My mother had the same as me, ovarian cancer but she would not fight or have any treatment so she only lasted 6 month that was 9 years ago. I found out last March & was given almost the same news as my mother but I want to fight & that is the difference. I am still here because I am fighting it. It will not be easy & chemo will be hard but it will be worth it.

You have so much to live for & remember all the ladies are rooting for you! Take care Cindyxx

[Ange09062016 in reply to 85live4ev]

I would think the same thing.... All the sonograms. I would like any info on healing music and health websites also. Keep fighting. We will be fighting together.

[Tesla_7US]

Hi Ange, I was diagnosed with PPC from stage 3C metastatic Epithelial OC with massive ascites Nov. 20, 2015. I've had primary chemo, then radical hysterectomy with no visible disease remaining then intra peritoneal chemo, then dose dense carbo taxol. Finished chemo Aug 10, 2016, with low normal CA125, had CAT scan 2 weeks later showing No Evidence of Disease. Anything is possible. The mind body connection is powerful. I'm reading "Radical Remission, Surviving Cancer Against All Odds" which is full of positive information. You'll recover to take care of your beautiful new baby!!! Tesla

[Ange09062016 in reply to Tesla_7US]

Thank you so much for your story. Very encouraging. I will def. look into reading that book.

[grammeejill]

Hi Ange. Congratulations on your new little one. I am sorry to hear of your PPC but so glad it was found when it was. I am PPC 3b, discovered during a ventral hernia operation. The hernia could very well have washed any symptoms. My cancer was not widespread yet and I had the usual cocktail of carb/taxo, hysterectomy, removal of omentum , one pelvic node and debulking of visible cancer.

I has 2 rounds IV treatment and 4 IP treatment.

I am 7 months post treatment and doing fine. No signs of anything going on inside there and my CA 125 is holding steady at 6.5.

Chemo was also not as bad as I thought. Like the other wonderful ladies here, I say take your anti nauseous meds diligently, drink lots of water, and eat even when you don't feel like it.

We are here to help and there are a lot of us doing just fine. Please reach out to us if needed.

I

[Ange09062016 in reply to grammeejill]

Yes, I see that there are a lot of ladies doing fine which makes me feel better. Reading the Google statitcs can be too horrific, I had to stop and wanted to just hear positive people and stories.

[Chamber]

Congratulations firstly on your newborn baby, and sorry to hear your diagnosis.

I have Ppc stage 4. Diagnosed may 2015. I've had chemo, debulking operation and have had 17 out of 18 avastin treatments.

Although I'm older than you ( 63) I was very fit and healthy, so the whole thing was a total shock to me and my family.

You'll get lots of advice and support on this forum. I would just say, keep as positive as you can Get as much help as possible when going through chemo.

You will find the strength to get through this.

Enjoy that gorgeous baby and give him / her a big cuddle from me !

Judy xxx

[Ange09062016 in reply to Chamber]

Thank you Judy. Appreciate the response. Wish you the best.

[Dollysmum]

Hi Ange,

A big warm welcome to you.

You've had a massive shock after what should be the happiest of times.

Chemo is daunting but doable and you have a beautiful baby girl to focus on and stay positive and grounded for.

I'm older than you and on my 55th birthday had my first chemo. Thanks to the women on this site, I got through it all. You will too.

Try to take each day as it happens.

Love

Debs xx

[Ange09062016 in reply to Dollysmum]

Thank you Deb. Yes it has been difficult because the happiest time got stolen from me. But it's what has to make me keep on going.

[Caroles1]

Lovely news about the baby! Shock about your diagnosis,but you will get through this and that baby will help you.I was diagnosed 1c in August 2014 and was told 2 more weeks and I would have been a goner.

I was given full hysterectomy and 6 months carbo/taxol and I am now NED.I am living proof you can get through.

When I was diagnosed I had just become a first time grandmother and trust me, that baby got me through,there were many emotional moments,but we now have him 2 days a week and he is like my little mate.I have to say I am emotional just writing this as I have recently been told there is another grandchild on the way,all of which would have been missed if I hadn't got through.

My point is, you can do this,once you have a plan in place for treatment you will feel braver and stronger,it isn't as bad as you think it's going to be and you have the most precious thing to live for.

You take care and anytime you need advice or positivity,come back and there are some amazing ladies who will get you through,

Lots of love

Carole xxx

[Ange09062016 in reply to Caroles1]

Thank you Carole. Congrats on your new grandchild! Your story truly helps me since they say my tumors are attached to at least 6 organs.

[Caroles1 in reply to Ange09062016]

Just be positive,you can do it,listen to others experiences and come back with any problems,there will always be someone that has come through the other side with advice and support.

Good luck for Tuesday,you have given your baby a brilliant start,my daughter couldn't breastfeed and we have a strapping 2 year old on our hands,you have done all you can do,please don't beat yourself up,

Carole xx

[Leeds2015]

Hello Angie. Sorry you have had to join this forum, but welcome and I hope you find lots of support. I honestly don't know what you must be feeling, having to deal with this and a new baby, but you will get through it. I have stage 3c PPC too. Thinking practical things like do you have family support and someone who can look after the baby on days that you may feel like crap? I went through cervical cancer treatment 12 years ago when my son was only 15 months. I swapped his nursery days so that he was in nursery the day of treatment and for 2 days after that, I would then start to feel better towards the end of the week and that was when I had my days off with him and felt I had more energy to entertain him. Are you breast feeding? I found that arnica 6c helped a lot with the baby blues and emotional side of things. When does chemo start? Please have a look through my previous posts, there maybe a few tips to help you and please message me if you need too. X

[Ange09062016 in reply to Leeds2015]

I have my wonderful husband to support me and family. I know I'm going to have to get help for those bad days with the baby. I was breast feeding up until today actually. Since I start chemo on Tuesday and have to stop breastfeeding I thought it would be best to stop before my milk flow comes in. My plan was to breast feed so that is very hard to cope with that I can't anymore.

[thesilent1]

Oh Ange, firstly, congratulations on the birth of your baby.

I'm so sorry you've been given this diagnosis. You have age on your side and will be strong and you've got that little baby to fight for. I was diagnosed with stage 3b ovarian cancer that involved the peritoneum back in 2013 and I've no intention of going anywhere yet and Im probably the same age as your mother!

You will likely have days when you're too tired to do anything, just make sure you ask friends and family to help you out. Usually its only a few days out of the 3 week cycle.

Get out walking with your baby in the pram when you can, that will relax you. Remember though you are still revovering from your section.

If you get a metallic taste, fresh pineapple will help.

You will lose your hair but think of the positives, no time wasted on waxing, shaving or plucking.

All the best. Ann xo

[Ange09062016 in reply to thesilent1]

Thank you for your response. Yes I'm still recovering from my c section that was 6 days ago and have pain. I'm not sure if any of the pain is associated with the PPC though and that gets frustrating. I can't even imagine losing my hair but have come to terms that is part of the battle and in the end it truly means nothing.

[thesilent1 in reply to Ange09062016]

My daughter had a section in Nov 15 and she had post operative pain afterwards too, it is likely though that you also have pain from the tumours. Please take it easy, follow the instructions given to you by the staff. Ann xx

[IrishMollyO]

Dear Ange

I am much older than you as are most women who are diagnosed . I also have stage 3c PPC and was diagnosed in May 2011 . I was not suitable for surgery .After draining 8 Litres of fluid I was given the standard chemo treatment of 6 rounds of Carboplatin and Taxol. Almost immediately I started to feel better. My CA125 which was 8000 at the beginning cane down to normal quickly and by the time I had completed treatment I was pronounced NED ( No Evidence of Disease ) . There are side effects but for me the good effects outweighed those for me. Although I have only recently started treatment again for recurrence in my lymph nodes I remain optimistic that all will be well again. I found the treatment very doable and Im a bit of a wimp usually when it comes to things like that.

Congratulations on your beautiful baby who I'm sure saved you by being the reason that area was bring checked to begin with. You will have lots of support here and will come across other PPC women. There is also a Guide for Younger women on this site.

The very best of luck. You can do it.

XXX

[Ange09062016 in reply to IrishMollyO]

Thank you for your story. Very encouraging. I know you will win the battle again with your lymph nodes. Yes, I would have never known if I didn't have a c section. I was dreading having one and didn't want one. I stopped dilating and was a over a week past my due date. Everything happens for a reason. My baby saved my life.

[IrishMollyO in reply to Ange09062016]

Hi Ange

As you see there are so many women reaching out to you now and they will continue to do so. You will find amazing courage that you didnt even know you had. As time went on I learned how to practice mindfulness in a support group. It really helps if you just focus on the present moment. " yesterday is history, tomorrow is a mystery . Today is a gift and that's why we call it the present " . None of us can predict tomorrow and it's a waste of precious energy to worry about it. With a lovely new baby to care for I'm sure I dont have to tell you all that ! Please keep in touch and if there is anything else you need to know please go on the website . Take care

XXX

[DeidreB in reply to IrishMollyO]

Thank you for sharing your story MollyO! I have PPC - my CA125 was over 4600 the day before chemo started. I have mild ascites and pleural effusion. Most of the posts I read have had CA125 in double or triple digits - which made my numbers seem scary.

[IrishMollyO in reply to DeidreB]

Hi Deidre

Don't be scared by your numbers. There are many including me with double that at diagnosis. Oncologists don't like women to get too hung up on them as they can show false positives or false negatives . They will use the numbers to check if chemo is working. In my case they came down very quickly and we're back to normal by end of chemo. The very best of luck and if I can help let me know..

XXX

[giovannabett]

Congratulations to you Ange, on so many fronts. Gio

[Hidden]

Hi Ange I have nothing more to add that these kind strong caring ladies have said, I wish you congratulations on the birth of your little girl and so sorry that you've had this diagnosis, this site is full of ladies who will support you if needed with lots of tips to get through chemo and lots of good advise if needed. I have posted lots of questions and have always got a response and support.

I wish you all the best for chemo, a big hug and you know where we are if you need us

Karen

Xx

[Crickette]

Dear Ange,

I was diagnosed on March 30th, 2116 with stage 4 PPC. Shocking for me since I had always been the picture of health. I made the choice not to have the debulking surgery done and started on the carbo/taxol (every 3 weeks for 6 times). I had pictured myself being bed ridden and vomiting...not so at all! I never got the slightest bit nauseous. Everyone is so very different with the side effects, I can only tell my own experience with chemo.

For me, I did have body aches, some big time fatigue, and loss of appetite. That would come a couple of days after the infusions and last between 6 to 8 days. With each infusion, I felt better. I just finished the last one on Tuesday and am feeling pretty darn good. The first visit to the doctor, I could not even sit up...now I have a snap back in my step and my sweet husband has to keep up. My cancer is in remission and I will be starting the maintance in two weeks.

One of the parts of chemo that no one me mention to me, is it is given so slowly. Drip by drip...taking around seven hours every three weeks. It was so boring for me! My advice it to take foods or wonderful snacks, books, an IPad or laptop to help make the time pass faster. There is no pain involved. On the maintenance I will be in and out in 20 to 30 minutes.

The hair loss has been interesting. I had long blond hair, and so dreaded that loss. I bought wigs, scarfs, hats, fake eyelashes, a kit to color in my eye brows....and have used very little of them. I have a few very soft scull caps and tie a pretty scarf around them when we go out. At home, I go "full Monty" bald. It is so comfortable...and showers take a few minutes. That too has not been as bad as I expected. AND it is already started growing back. I will have hair by Christmas.

I realized cancer is similar to what people with failing kidneys go through with getting diallisis (spelling?) Or diabetics dealing with insulin. The cancer is just a part of my life...it is not my life!

A very old poem by Emerson, has been of help to remind me not to think too far in the future or too much.

"Some of your hurts, you have cured,

And the strongest you've even survived,

But what torments of grief you endured

From evils which never arrived".

You have come to the right place. These lovely ladies will make your journey an easier one. I know they have for me.

Bless your heart Ange and that sweet baby and always know you are not alone in this strange place you find yourself.

Best thoughts to you, Crickette

[GoldenGourd]

Ange. As usual the women on here have already said so much which is helpful, caring, encouraging and "from one who knows how it is".

Congratulations on your new arrival. I have found this forum a life saver and an invaluable source of support. I'm sure you will too. It is obviously totally rubbish to find out you have cancer, especially at such an amazing and overwhelming time already. You will get through this. I have and still am. As my older son put it the other day "we have to play the cards we're dealt, mum".

Allow yourself time to be sad, to cry and to feel you have been given a raw deal. You don't always have to put a brave face on. Those who are true friends will shine through and understand.

I have found mints while in the chemo suite to be very helpful. Watermelon and mint tea are also useful for the days after chemo. Epsom salts in your bath help replace magnesium - you absorb through your skin if you can stay 20mins in the bath. You may find recorded books / I player etc helpful to listen to while you relax with you baby.

There is always someone here who has either been through a similar thing or is able to offer words of support. I wish you all the best.

Netti

[Rosewall101]

Dear Ange, what a crazy roller coaster. A new baby and recovery from a Caesarian and then this news. I feel for every lady on this site but my heart went out to you. This is a great place - for questions and advice and of course the scream out load moments.

It sounds like you have doctors with a clear treatment plan and I very much hope you have family and friends near to help too.

There are many positive stories and people on this site. I had breast cancer when my son was 18months old and I was full of dread for myself. My doctor told me that in his view women were stronger than men and mothers stronger than anyone. Please hold onto this thought.

I want to wish you so much luck with the chemo and hope it shrinks everything down. I hope you manage to retrain some happy space inside to think of a name for your baby and to have those first cuddles. Please remember to have some photos taken too with your baby and husband as your hair will probably go. So many beautiful hats ,scarves and turbans around but it's so nice to have a picture when you look like you.

T.x

[85live4ev]

Hi Ange I have notice you have received lots of great advice. I mention DNA healing music its ment to heal your DNA well anything is worth a try I found this on, you tube. Another one I have found useful on you tube is (montrealhealthygirl) she believes in juicing. I also do lots of different cancer healing meditations I put ear phones in & try to relax & allow the healing to happen. Take care Cindyxx

[DeidreB in reply to 85live4ev]

Lots of youtube videos with healing sound and music. I like the Tibetan bells. Meditation has so many benefits - I like loving kindness meditation. No harm in doing this and it's free.

[Hidden]

Congratulations on the birth of your new baby and thank God you had a c-section which led to the discovery of your PPC. The lovely ladies here have told you that chemo is doable and I agree. A positive mental attitude works wonders as does adequate rest and a healthy diet. I had the warrior mentality when I started this new phase in my life but after a while I found the aggression that accompanies constant fighting was wearing me down emotionally and physically so I switched to acceptance and working with my wonderful medics to help my body to heal in a calm and peaceful environment. I can't begin to tell you how much more secure I feel having adopted the gentle approach. Take care of yourself and your baby. Mine are 36 and 33 😋😋😋 and have been brilliant, as has my beloved husband. Hugs. Jeannine xxx

Ps: it is bliss not to have to shave one's legs. However, the skin can get very dry so slather yourself with scented lotions and potions.

[LittleSan]

Oh my days Ange! The best advice I can give is accept all the help you get offered and keep all the best jobs and tasks for yourself (like enjoying your baby girl). Give yourself permission to indulge in the good bits and field out all the rubbish jobs (field out the baby when she's being fractious too - as they all are from time to time!).

Chemo is tough but doable. Do be very kind to yourself. Keep yourself hydrated.

As for positive - my mum never recurred and is still here 22 years on and I am 5 years on from diagnosis next week.

Wishing you all the love, strength and health that life can bring.

Sandra xx

[hunkydory]

Hi Ange. Blessings to you and your new baby. I am so sorry that you have been diagnosed with OC. I just want to tell you that in 2004 I had stage 3 colon and ovarian cancer and had surgery and 12 months of chemo. I was still able to cook for my family, clean house do laundry and went to the mall everyday just to walk around for exercise. I was a bit dizzy and could not taste food but I managed very well. My hair got very thin but it did not fall out completely. Everyone is different and reacts differently to treatment but chemo is a doable thing and not as bad as we expect. You will do fine.

My 34 year old daughter has anemia due to lack of iron in her blood and she also has Myasthenia Gravis and Thymoma. She Had surgery to remove the tumor and now is on her 2nd month of chemo. She has one more treatment next month and then will have more surgery to remove the rest of the tumor that twas not removed the first time. This will be done at the MD Anderson Cancer Research Center in Texas. She too was worried about chemo but she has done alright. She did run a fever about 10 days before her 2nd treatment was to start. Her blood counts were also very low . She was immediately admitted into the hospital for 7 days to give antibiotics to clear up an infection she caught . She is is doing fine now and has just started her 2nd month of chemo t today and is doing well.. She will be done with 2nd round on Thursday.

My daughter spends a lot of time reading her lab reports She Googles everything she questions on her labs and then finds answers that upset her. What she finds either does not actually apply to her or the info is old and out of date.. She then asks the doctors about her reports and tells him what she found on Google and he has to reassured her that she is fine and what she read does not pertain to her. He told her she needs to get a hobby instead of reading Google. {That's good advice} He also assured her if there is ever a problem they would tell her and they would start working to solve it. (In other words. Don' t compare yourself to everything you read. ) Your doctor knows what to do if you do have a problem. Listen to him and not the Web Docs.

Good Luck to you. Sending hugs and prayers. Enjoy your baby and not Google.

[Hidden]

Welcome to your new little baby, it is not that long since you had the C section. Your life is changed in so many ways and focus on the positive ones. I hope you have friends and family around to help you cope with baby and chemo. I am glad all is good so far, it was a huge shock to get but its diagnosed and now being treated. I hope you will come on here from time to time with any questions about chemo and we will help you as much as we can.