Stage 3 ppc: Hi everyone I just joined your... - My Ovacome

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Stage 3 ppc

Rlenesue profile image
25 Replies

Hi everyone

I just joined your network today and I'm grateful to have found you. I was diagnosed late january after my daughter and I went to hospital for a ct scan. I had 2 doctors for 2 months telling me my stomach was bloated with gas and that I should eat more fiber. I had 5 liters of fluid in my stomach.

I was diagnosed at stage 3 ppc with a ca125 of 25,000. They stop counting at 25,000. Since then I've had 4 rounds of taxol and carboplatin, then surgery, then 3 rounds of ip taxol and cisplatin, last treatment was Monday.. I am still experiencing stomach pains and am so tired and lightheaded. How long does this last? I am also interested in nutrition, what foods to eat, what not to eat? I suffer from gerd and ibs2which does not help me at all. With the omentum gone I feel like I can't eat, don't want to eat, etc.. Or I get so hungry and then I overeat.

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Rlenesue profile image
Rlenesue
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25 Replies

Hello, i recently found out that every patient undergoing chemo in the uk has the right to dietician support as I'm struggling to manage chemo for OC and the complication of a low fat diet to manage side effects of surgery. There should be an oncology dietician at your chemo centre, ask your chemo nurse. I've found mine amazingly helpful at managing both issues.

Hope that maybe helps with one thing.

X

Rlenesue profile image
Rlenesue in reply to

Hi lisa66

My oncology center does offer nutrition advise but I thought hearing from patients experiencing it is a better resource. I know when I went through breast cancer 8 years ago the patients from the online forum have me the most valuable information and helped me advocate for myself. I'm just so tired of being in pain starting with symptoms Oct of 2015.

in reply to Rlenesue

Hi, I've had my omentum removed too but haven't noticed it effecting my eating. I am having to force myself to eat some of the time but it's not too bad, things aren't normal by any stretch but I'm still got through chemo so that maybe why. I use fortasip drinks as someone has mentioned. What effect does the omentum being gone have on you?

Lisa x

Rlenesue profile image
Rlenesue in reply to

No appetite or ravenous. I can't eat a lot at one sitting and the food doesn't stay in my system long. That's basically the lack of my omentum. As a plus, the baby roll I couldn't get rid of is gone!

Tracex profile image
Tracex

Hi hope your ok after my surgery and loss of weight before my news of cancer grade 3b.. i went onto complan which you can buy from boots they helped me to put on bit weight plus have all added vitamins i use to have one/two aday its just a milkshake but it helped xxx

Rlenesue profile image
Rlenesue in reply to Tracex

Hi tracex

Thanks for your reply. Being cancer free right now is great, but the constant stomach pain, nausea and exhaustion is becoming tiresome. I will have to incorporate vitamins into my diet since I'm not eating properly. In afraid to put anything much in my stomach.

January-2016-UK profile image
January-2016-UK

Hello, A warm welcome to our site.

I'm guessing you're from the US (spelling of fibre and litres). I'm unsure what gerd is. Like you I had surgery after four rounds of carbo / taxol but I didn't have IP treatment afterwards, just 2 rounds of IV. I was quite tired for some time and only now am feeling almost normal (my last chemo was May). I do have some peripheral neuropathy which is slowly getting better, but I haven't had problems with my appetite.

I'm sure someone will be on line soon with advice regarding your problems regarding eating.

All the best! Helen

Rlenesue profile image
Rlenesue in reply to January-2016-UK

Thank you, helen. Gerd is severe acid reflux which hampers me eating healthier foods. I can't believe you're just getting your strength back now. At least I know what to look forward to.

I would suggest you get help to settle the Gerd symptoms which are quite uncomfortable especially at night. Can you get something like Fortesip, these are milkshakes with protein etc and invaluable when you have a loss of appetite. Your doctor should be able to prescrible these for you, Rice is good with cream added, Perhaps a piece of chicken or eat what you fancy. Start with eating small amount four times a day instead of doing it all at once, Hope that helps you a bit,

Rlenesue profile image
Rlenesue in reply to

I do take daily meds for gerd yet they seem to be worse with chemo effects. That drink sounds like what we have here in the US called ensure. Protein and vitamin drinks. How long does it take for the chemo to get out of your body? I've been on taxol, carboplatin and ip cisplatin, real toxic stuff.

in reply to Rlenesue

The bad news is that it can take quite a while to get back to normal, the chemo remains in your body working away. Epsom salts baths are good for the aches, I imagine you can get them at the drugstore and put a cup into your bath water. It contains magnesium and you need to stay in the bath for twenty mins as the body will soak it up. I would suggest drink plenty of fluids as well to stay hydrated, rest every day. Yes you are posssibly right about ensure. My sister who is 70 got chicken pox and was very ill but the milk shakes did give her that boost she needed to start getting out and about again.

foss54 profile image
foss54

Hello there, I'm another PPC 3c, diagnosed a couple of years ago, and the swollen stomach, etc., is a familiar story. My tip is to eat little and often, anything you fancy. If you really can't eat proper food, then those instant food drinks are pretty awful, but provide nutrition.

As important is to get to grips with your symptoms. My local hospice has spent a few weeks sorting me out, but I now have no nausea, pain or sickness, and it's heaven. It can be done, so keep badgering people till you feel better, it's worth it.

All the best x

Rlenesue profile image
Rlenesue in reply to foss54

Thank you for the tip. I'm not eating much, yogurt, cereal, eggs. I drink liquids all day so I keep hydrated. Feel better

Tesla_7US profile image
Tesla_7US

Rlenesue, I also have GERD. The medications for that have serious long term negative effects. I bought one of those adjustable beds and sleep in a semi reclining position. The GERD is gone now!!!! Also, do not eat anything at least 2 hours before bedtime. The proton pump inhibitor meds cause bloating and constipation. 3C OC, just finished chemo. Tesla

Rlenesue profile image
Rlenesue in reply to Tesla_7US

I would like to get off those meds too. There is this blue pill that I can't seem to be without. It stops my colon from spasming and works terrificly

Rlenesue profile image
Rlenesue in reply to Tesla_7US

Hi tesla,

Yesterday was a great day..hardly any tummy pain and I went off the gerd meds, as you said, they have long term effects. I will take meds only when needed. Today I feel pretty good, my stomach pains are definitely subsiding and I am grateful for that. Just very tired and drained. To be expected I'm sure.

Sherrym profile image
Sherrym

I took a lot of advice from the Penny Brohn Clinic in Bristol. Very much worth a visit it st least a phone call if you have time. It is free though I make donations.

Also, the COC in London. I avoid all sugar as much as poss, no simple carbs, red meat twice monthly, fish twice weekly. Nothing processed. Stevia or xicitol in tea of coffee. Lots of tumeric & black pepper, herbs of all sorts to cut down on salt. No tinned food.

Afraid I don't stick to this religiously but feel ok at mo. Be sensible & only read the most up to date advice for cancer diet. The rainbow diet, eating to beat cancer etc. At least, u will feel like you are helping yourself.

Good luck

Rlenesue profile image
Rlenesue in reply to Sherrym

The rainbow diet? I'll have to look it up. You eat very healthy. I was too before getting sick. Sweets are my enemy but that's about it

Lauramarie68 profile image
Lauramarie68

What is pox?

And I'm sorry you are going through this have you tried eating several really small meals throughout the day so that you don't over eat and get an upset stomach?

IrishMollyO profile image
IrishMollyO

Hi there

PPC sister here ! Diagnosed stage 3c in 2011. Like you I had never heard it before and I lost count of the amount of times I was told IBS Anxiety etc. Eventually a watchful locum did a CA125 when she could see that my tummy was about to explode with 8 litres of fluid ! Fast forward via chemo only and NED until this year. Started chemo this Mon for recurrence in lymph nodes so I hope I can banish it again . As I never had surgery I would imagine that for you may still have some effects from your op but that would be for your Doctors to decide that . I never had really bad pain apart from the constipation that goes with the territory . The bad heartburn must be a symptom as it as Lanzaprole was prescribed immediately .

Before I ever knew i was ill I had very bad heartburn but I used to find that sipping a few mouthfuls of cold milk would ease it. Yours is much more distressing I would imagine. I didn't drastically change my diet but I do stay away from spicy foods. Try to eat little and often if you can't face a big meal.

Drink plenty of fluids apart from alcohol . I allow myself a glass of wine occasionally. The exhaustion can be distressing . A half hour walk today felt like the Olympic marathon. Now relax for the rest of the evening.. You are not as alone as you thought . You are surrounded by willing helpers. Take care

XXX

Rlenesue profile image
Rlenesue in reply to IrishMollyO

Thank you Molly. Glad I'm not alone in this. So sorry about the recurrence. Milk does help me too. I will blame chemo on my stomach pains and hopefully it will dissipate with time.

Gleedy profile image
Gleedy

I have stage 3 PPC. Had similar treatment as you. After surgery I could barely eat a quarter of a sandwich without severe over eating pain. This has slowly got better and although not the same as pre op I can eat a normal sized meal now. I do get very tired but hope this improves now chemo has just stopped. You haven't said how long ago your last surgery was or last chemo. Both have major effects on the body. I'm sure in time things will improve. We are all different and recover at different rates. Don't be too harsh on yourself. You may need to just rest at the moment. X

Rlenesue profile image
Rlenesue in reply to Gleedy

Thanks for your reply. My surgery was June 6 and last chemo Aug 15. I have severe stomach pain from last chemo I assume and tired a lot. No energy at all. I'm sure it will get better over time I'm just eager to get my life back. I've been in treatment 7 months and I'm just over it all

Gleedy profile image
Gleedy in reply to Rlenesue

My surgery was June 6th too!!!! I think it is early days. I only had tummy pains after chemo days. Could you check with your nurse or GP about the tummy pains. The rest I think is quite what to expect for a while. Don't sit and worry. Get some advice xxx

Rlenesue profile image
Rlenesue in reply to Gleedy

I'm not worried about the tummy pains, they're definitely from chemo, I just want them to go away already. Today I feel pretty good and I hope it stays that way.

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