PPC newbie here - scared and sick

I'm grateful for this forum. Last week I was diagnosed with stage 3 PPC. I have been very sick with ascites, pelvic pain, and nausea. I'm getting my chemo port tomorrow and set to start chemo on Friday. I'm 63 and live in Seattle, WA USA. I have a wonderful daughter, and I know she is taking the brunt of this. All I can think about is dying. The nausea is unrelenting even with Zofran. I guess I just need some encouragement. Thanks for listening.

23 Replies

oldestnewest
  • Hi Kat,you have come to the right place for advice and encouragement ( any advice away take it over with your team first) I've been on this site for over 2 1/2 years and I don't know what I would have done with out all the lovely ladies. We all understand your feelings and thinking about drying, but once you have your treatment in place you will start to fight the beast you won't let it win. When I was diagnosed near 3 years ago my family were told 6 months to a year I'm still here and a lot of ladies are still here years later. it's not a death sentence.

    I'm not down playing the sereneness of cancer it serious but we are all so different and your journey will be yours. Remember that we are all here for you, advice, encouragement or just a good cry...Lorraine xx💙💙

    PS,, I have a port it has been in for 2 years love it and do not be worried about having it done you don't feel a thing.

  • Good luck Kat I have been on this journey for nearly 8 years now am now 70 years old and nearly all of us were in the same place as you are now I have had my portacath in place for all that time and haven't had a problem with it Once you have started your treatment you will start to fight this beast and you have come to the right place for encouragement from some amazing ladies I am currently on chemo again but still here so sending lots of love ❤️

  • Hi Kat. So sorry you've had to seek us out. But you'll find there's a lot of experience among us. I was diagnosed 5 1/2 years ago age 65 (then) 3c high grade. I'm still here. I'm not sick - I'm well. If you Google OC, you'll probably think you're doomed but the amount of drugs to treat you are increasing all the time. So do NOT think you're dying. You are not. Before too long, you will settle into a routine of chemo and you will know what to expect each day will hold for you. We all know what a shock the diagnosis is. It will become part of your life, I'm afraid - but you will get used to it. The port is a Godsend. So much better than catheters while you watch the loss of your precious veins. There are at least 2 other Americans who contribute regularly to this forum. My daughter works & lives in the USA. I've visited a couple of times. Your daughter will be a great asset to you - just what you need. Stay strong. Good luck & best wishes. Pauline.

  • Hi Kat, dont believe too much into what people say about PPC. My wife Gauri was diagnosed with 3C PPC in Dec 2015 and here she is now, doing very well and enjoying the joys of life. Debulking with Hipec followed by six rounds of chemo (carboplatin and paclitaxel), IV as well as IP. So, look at your case with all positivity and Keep the Faith. All will be well. Do not get depressed as it will also affect the ones dear and near. PPC, with the advent of better heatlthcare options is definitely manageable.

    Naimish

  • Welcome Kat but so sorry you have had to join our group of lovely ladies . We understand totally how you are feeling and it is understandable that you are feeling terrified but hang on in there . I was diagnosed with stage 4 high grade OC in June 2016 whilst on holiday in Mauritius , taken ill with ascites . So scared couldn't walk , eat or sit without pain and discomfort. Once the fluid is drained / or chemo disperses it you should start to feel much better. I was told I was inoperable without chemo first and thought I wouldn't get to Christmas and my daughters 20 th birthday .

    Almost a year since diagnosis and 4 months post chemo , i am still here NED and well , enjoying each day and making plans for my daughters 21st this Dec .

    The lovely ladies on here helped to give me the hope and strength to get through this terrifying roller coaster ride and we are here for you.

    Sending you love and best wishes for your treatment and lots of positive vibes 💜. Hang on in there ! You can do this .

    Love Kim X

  • Kat98116, I am in Seattle, WA too. Please read my profile. I had an outstanding surgeon. We're not supposed to mention docs names in this forum. My gynecological oncologist saved my life. I'm now 9 months in remission. You can message me privately through this site. Feel free to do so. Now that you've had time to think about dying go ahead and think about continuing to live. It's OK, help is on the way. Love to you Tesla

  • Hi,

    Firstly I'm so sorry to hear of your diagnosis :(

    Once you start your treatment you will feel a little more in control, because you can focus on getting through each phase by keeping as well as you can, talking, avoiding crowds & visitors when your immune system drops ( usually around day 10 post chemo )

    Eating, little and often, whatever you fancy.

    Do go back about your nausea too, their are lots of anti emetics available. I find immend ( during chemo )

    The steroids, and cyclizine are enough for me.

    But there's also

    Ondansetron

    Domperfone

    Metroclopomide

    You will get a concoction to suit, promise

    Good luck xx

  • I suffered from ascites & pain. It was so frightening to begin with but you'll get to learn how to get through it. Have the chemo, get the ascites drained have the op more chemo then move onward. Its ok to have pain killers too. Dont be frightened you'll get addicted that's the least of your problems.

  • Hello and welcome to our forum. I expect you will find your ascites will subside once chemo starts. It maybe that the ascites is casing the nausea but I would ask your medical team to suggest another nausea medication. It won't be easy to have unrelenting nausea and it's unnecessary.

    You're fortunate you have a wonderful daughter supporting you. You've had a lot to take on board recently and your mind is probably in a whirl. Things will settle down once you settle into your treatment routine and you start to feel less unwell.

    Good luck for Friday!

  • Nausea is awful and can leave me feeling helpless. Is there anything your oncology team can give you that helps? Just sucking ice can stop it for a while x

  • Hi Kat, welcome to our club, the one that none of us really wanted to be a member of but hey ... I'm sorry you're feeling so rubbish at the minute, once your chemo starts things should start to settle down for you. If you have a lot of ascites you could ask them about draining it for you. Stay away from Dr Google, all doom and gloom. Statistics are old and remember, YOU are not a statistic.

    Its natural to think about dying after being given a diagnosis of advanced ovarian cancer. I did too, every time I looked at my 2 grandsons who were just turned One and about to turn One, I kept thinking I wouldn't be around to see them start school and I would get very upset. However, here I am four years on and the eldest is almost finished his first year in primary school and the younger is the same with nursery school and will start primary school in September. I also now have two granddaughters, the eldest of which is Two today.

    Chemo comes with a host of side effects but not everyone will get them all. The most obvious one is hair loss. Personally I couldn't cope with the wig but I managed with nice scarves and became quite adept at tying them. Their are various videos on You Tube to show you how. Something that you could have some fun with your daughter trying out the different styles.

    If you start to get a metallic taste in your mouth, eat some fresh pineapple, especially before you eat your meal, it will help. Remember to drink lots of water both during and in the days after chemo, this will help with going to the bathroom as you really don't want to become constipated. Also, remember to take your steroids as advised and certainly don't take them any later than 2pm or you will have difficulty sleeping. Remember, if you are really poorly or in a loot of pain, do contact your unit as they will be able to help you.

    We are here for you, there will always be someone on line so make use of your new friends. Best wishes. Ann xx

  • Ann, I feel exactly the same way about my grandchildren - boy and girl twins age 3. I want to see them grow up! Thanks for the encouragement.

  • You're very welcome Kat. I don't know much about the American Health system but I believe the treatment for ovarian cancer is the same as in the UK. There is a Broadway star with ovarian cancer, forget her name but remember reading all about her. When you feel and are being sick it is so easy to get down, hooefully once treatment starts, you will get your big girl pants on and be ready to fight! Big hugs. Ann xx

  • Hey Silent1, so glad you reminded her (and me) of how the steroids KEEP US AWAKE!!! I love this forum. All of these wonderful, generous, kind women who help each other to cope with this disease-- makes my heart sing to be part of a safe place that brings comfort and kindness to others. T

  • Welcome to this club nobody wants to join but glad you found us. I have learned a lot on this forum as well as Inspire and also want to encourage others just starting out. I'm in the US too but on the East Coast. I will second everyone's statements that the initial dx feels like a death sentence. I cried at least part of every day for the first 3 months , I was like a fountain. It slowly got better. However, once your tx starts and you have a plan you do feel in a different place and more hopeful and optimistic. I became best friends with my CVS pharmacist as I was on countless meds , some to address the side effects of the nausea and other problems like bone pain and some to counteract the side effects of the drugs to counteract the side effects of the said drugs. My kitchen counter was like a pharmacy. For nausea which I also battled big time I took Zofran 8 mg AND compazine on a rotating basis ( one in the morning, one at lunch, they set up a schedule for me) which I was originally afraid of bc it's an antipsychotic too (not that I didn't need that at times! LOL ) plus I got a pot license and did edibles (medical marijuana is legal in RI, not sure in Washington, but expensive). I took these around the clock for a at least a week each cycle. Still queasy but at least not vomiting all the time. Also eat frequently, small meals and what you like. This is no time to worry about special diets , even the eating organic and stuff can wait, - my advice is to just eat what you want and can tolerate during chemo. I was downing Hostess cherry pies of all things , when I could! Craved them and really what the hell. It's important to keep on weight during chemo. The Zofran - I was on the higher side 8 mg will lead to constipation so I was on a twice a day Miralax regimen for that and lots of prunes and canned peaches. It does take over your life for awhile. I got a notebook and logged everything as it is so easy to forget what you took when. Wrote it down as soon as I took stuff. Plus the extensive pelvic surgery messed me up big time with irregularity. I have to say my bowels 3 years later are not what they used to be but I work with a GI who thinks I have intestinal neuropathy , never heard of that one, from the taxol, and make adjustments and I'm still on fiber supplements. They think I was 2c and definitely clear cell which is a beast unto into self. High grade and can be resistant to chemo. I go for OC checks this week and next , am a nervous wreck, start the Ativan drip please, and then have a full roster of breast checks (MRI interspersed with mammograms) and endoscopy and colonoscopy in June bc I'm considered at higher risk of those cancers as well given family history (despite being BRCA negative with my sister being BRCA positive) plus the GI wants to visualize everything down there and my oncology team agrees. I was 51 at dx, went into an overnight menopause after surgery which has been another layer of problems, cannot take any hormones and was unable to work for almost a year (ultimately losing my job and benefits). I also had 2 orthopedic surgeries within the year after chemo. It has been a ride which I can't get off but I am buckled in for the long-term at this point! I am working again and am active in life albeit more tired than I used to be. I am NED right now but have been feeling a bit funkier than usual so holding my breath for this next round of checks. I talk to myself every day (as well as tsking antianxiety meds, my psychiatrist feels reducing cortisol levels is important for immunity function as she's a cancer survivor herself) and set priorities for life, they have changed. My husband also had health problems and we were unable to have children and have limited other family help so I do worry about the future but as I go forward I try to make plans as needed. I will go one further than the take one day at a time mantra - sometimes you seriously have to get through the next hour or the upcoming afternoon particularly when you are in active treatment. As you feel better plan mini fun things like a movie, walk in the park, coffee with a friend, etc. keep a log of your symptoms and you may be surprised that after whatever numbers of months you are making progress in not feeling so bad. A tough road indeed. Cancer has changed me in so many ways but not all of them bad. I will not sugar coat this though. I have never viewed this as a "gift" or any of those platitudes. It sucks pkain and simple. I have a shirt a friend gave me that says Embrace the Suck and that's the best I can do! God speed to you. Keep us posted and prayers for all of us!

  • Martina, thank you for your extensive and heartfelt reply. There is so much to digest here and I will read it again. I am very worried about the GI part of this having suffered from IBS for many years. I will definitely be rereading your tips on that. Thank you.

  • Hi Kat

    I was diagnosed with PPC stage 3 April 2016, had ascites and severe pelvic pain, had 3 carbo/ taxol then debulking surgery then a further 3 chemo I am now currently NED. It's difficult to imagine anything else but dying when you are first diagnosed but once I started treatment my thoughts all became about surviving and fighting.

    I would not have got through those dark days without the support and inspiration from the wonderful ladies using this site , and also know that if I need to talk or let some steam off, their is always someone listening and inspiring me on. I hope everything goes well on Friday and remember if you have any side effects speak to your medical team.

    Hugs Ellsey xx

  • Kate, I was diagnosed last fall with PPC. Was discovered due to sudden onset of ascites and a trip to the ERI - thought it was a stomach issue. They did some tests and gave me a ct scan. They told me it was "likely" cancer right then and there. A day later i had the ascited biopsied and drained and my worst nightmare was confirmed. I found out the fluid was cancerous andit was all over my peritoneal. I was scared, panicked! I had 3.5 cycles of Carbo/taxol. Had a good result. Then surgery and then more chemo. Was confirmed to be ovarian or fallopian cancer 3c following surgery. I won't lie- I was scared the entire time. Last week after a pet/ct scans I got confirmation that there is no sign of cancer. If I can do it, so can you! It's a slow process, and if you have anxiety like I do, it's emotionally very tough to manage. But you will get through this! The women on this forum are amazing and will provide love, support and wisdom all the way through so come back often to vent, cry, ask questions, get advice or get comfort knowing you aren't alone.

    You got this!

    Prayers and love to you-

    Anne 🌸🌺🌼

  • Anne, your diagnosis sounds like a clone of mine; exact same circumstances; ER, scans, draining, diagnosis. I'm am so glad you are doing well. I'm so glad others have said the ascites will start to drain with chemo. I think that's what's causing my extreme nausea. I also have fluid on my lungs, but can breathe ok (sort of). Thanks for normalizing all the fear and anxiety and the thoughts of death. It's freaky.

  • Kate- the ascites got a little worse before it got better. I want you to be prepared that it may take a handful of chemo treatments before it goes away. But it will. The breathing issues could be from ascites. I bought a wedge foam thing from amazon and slept on that. It kept my head up enough to help me breathe more comfortably while I tried to sleep. I just stuck my pillow on top of it. Hang in there- once the ascites goes away you will start to feel and move better. Heating pad also helps if your back is hurting. Mine did from the ascities as well. That went away as soon as the ascites was gone. I wish I kept a journal, but guessing it was about 3 or 4 treatments. Then went down a little every day. Feel free to send me a private message with any questions. I am in San Francisco so on same time zone. I'm happy to share any other tips I picked up along the way. Xo

  • Thank you all so much! I wish I had the energy to respond to each and every one of you. You have given me hope and comfort. I'm leaving soon for the port placement. I just can't thank you enough for your support.

  • Hi Kat

    As you have described yourself as a PPC newbie I want to encourage you by telling you that I am a PPC oldie ! I don't mean age ( although I have to admit to being 72 yesterday ) ! I was diagnosed on my birthday in 2011 with stage 3 high grade serous PPC. I had the 6month pregnant look , the lack of appetite and the tummy pains . I had been admitted through A and E or I think you call it ER. I had 8litres of ascites drained and was told i was inoperable. I then had 6cycles of Carboplatin/ Taxol which brought my Ca125 from a high count of over 8000 back to a normal level of under 36 . By the end I was declared NED ( no evidence of disease ).

    I remained NED until Mar last year when i recurred in my lymph nodes. I had more chemo which reduced the swelling in my nodes andI will have a scan again in Jun. It hasn't been all plain sailing but I remain optimistic. I have been told to look on my disease as chronic and you will read about many women here who come back and fight again and again .

    I just want to tell you that as soon as you get a treatment plan you will relax more and when you start your treatment you will feel better psychologically knowing you are now fighting this. Many women have debulking surgery as,well as chemo and some like me just have chemo. We are all different and our treatment is tailored for our individual needs. You are lucky to live in the USA which has an excellent reputation for Cancer treatment. Tesla has replied to you and she is a wonderful contributer to this site and has encouraged me many times.

    Good luck tomorrow and remember it's all going to be worth it. The side effects may never be as bad as you anticipate. I sailed through mine. If you need any advice or help let us know . I live in Ireland and I find this site invaluable. When you are down everyone will rush to help. The very best of luck. Take care

    XXX

  • Hi Kat, It's so frightening at first, but rest assured, things will get better. As you move along.....port placement, surgery, chemo etc....and you have a plan, you'll be empowered and will feel better. We all think about dying at intervals, but rest assured, there are so many treatments available, and this is treated as a chronic disease now. I was diagnosed with stage 4 OC when I was 68. I had the surgery and 18 weeks of chemo. I am now 27 months in remission! Every patient is different, so try to take one thing at a time. I just try to do my best, and enjoy every day.

    I am in the US, too. I live in southern NH, so I have access to Massachusetts General. I have advocated for myself, and I think doctors are getting used to that.

    I'm so glad you've found this forum. The ladies here are so lovely. I didn't find a forum in the US that I liked as well as this one.

    Please keep us posted on your progress.

    Sending hugs and prayers from the east coast to the west coast..........JudyV

You may also like...