My Ovacome
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Primary Peritoneal Cancer

Tis raining so got stuck in the net an came across you lot while looking for info on muscle an joint pain from the Beva. Joined to see if there is anyone else out there with PPC....It wasn't even an option in the list of conditions so had to opt for Ovarian. Anyway hallo all, good to have come across it as have found good info in your posts.

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Hi Lileth,

There's a treasure trove of information here. Hope your joint pain improves.

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Thank you.

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Hi Lilith and welcome. PPC has the same embryonic origin as Ovarian and is treated the same. It’s thought that a significant number of women classed as having Ovarian have PPC in reality. Also, it’s now thought that many women with high grade, have Fallopian Tube cancer as that’s where it might begin.

You’ll find lots of info here as Nancy has said. Xx

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Thank you, didn't know that about the Fallopian Tube Cancer, interesting as mine is high grade.

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I was originally diagnosed with PPC but was rediagnosed with LGSC following surgery

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I didn't know what that was, have just looked it up, am now informed, tis nothing if not a huge learning curve.....But one we all wish we weren't on!

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Sorry I was being lazy

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Hi Lileth,

PPCers welcome here 😊 There are quite a few ladies who have it on this forum.

I have ovarian, but am having Beva (also called Avastin in the UK). I find salt baths (Epsom salt) help with joint and muscle pain, but my worst side effect is nose bleeds! They are pretty yucky, but over quickly.

Vicki

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Now thank you, I knew about the Epsom Salts but had forgotten, my memory seems to have departed for sunnier climes. Will get some and go in search of a bath...I don't have one.

I have the nose bleeds too, have had them all through but worse now with just the Beva! My nose feels odd each morning too, all tingly and painful but eases after a while.

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Yes! My nose is tingly and painful - like the kind of equivalent pain when you pluck your eyebrows!! It really hurts for a bit, then the pain just fades away. Normally happens at about 4am 🙄 Very odd sensation.

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Thanks for the clarification, it’s called Avastin in Canada as well. I get joint pain too. I do too things, use an essential topically on the pain sight (for me it’s neck and shoulder) and I go swimming to stretch and gently exercise the joint without any undue pressure. Hope this helps and good luck!

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Hi,

After 6 months of being misdiagnosed with a hernia problem they eventually diagnosed me as ppc in September 2017 as they couldn't find any tumours on the many scans and the Mri I had as apparently it's difficult to diagnose, even now they put possible ppc on my letters. There are a few of us on the site and they will probably be by to welcome you as well even though all of us wish we didn't have the disease so wouldn't need to be on here. I couldn't have operation as misdiagnosis had left it to late. How long have you had ppc. You will find the ladies on here very friendly and supportive and a wealth of information.

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Sorry to hear you couldn't have the op, hope you are doing okay.

I was diagnosed in August 2017, although the GP I saw at the end of May telephoned me to tell me my blood test showed I had some form of cancer, took um till August to decided which.

We all have similar stories I'm sure, the only symptoms I had at first were indigestion and hip pain.

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Yes I'm ppc on the avastin, mostly joint pain and I get a stiff neck as well, I just ride it out or take paracetamol.

Trish x

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Yes I been riding it out too and carrying on, figured if I was going to ache anyway I might as well do stuff to warrant the pain, is better if I keep going as is worse at night if I sit too long, sort of cease up. Just keeps getting worse thought every joint hurts. Am reassured now after hearing others suffer the same side effect.

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Yes I cease up if I sit too long, but get very tired when I do too much lol can't win x

Trish x

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HI, I WAs diagnosed with ovarian cancer 14 years ago now. THEN wssdiagnosed with PLC July 2015. I have had one reoccurence finished 2nd line of chemo last Sept with great response went into remission again. At moment feeling good . The women on here are amazing they have a wealth of up to date information, advice and give wonderful support. LOVECHRIS

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Thank you Chris, good to hear you are in remission, I am too and doing all I can to stay there. Yes the info on here is amazing.

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Lileth I was dx with ppc grade 3c originally, then 4 after surgery, my joint and bone pain started once I started treatment and went on for months afterwards. I was then dx hyperthyroidism and told this could be causing myalgia, I a m currently taking Carbamazol anti thyroid meds and it has eased a lot.

Ellsey xx

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Yes , I am high grade PPC 3C diagnosed in Oct 15 after sudden onset of ascites . Had 7 litres drained , then Carbo-Taxol X 6 with debulking surgery in the middle . Haven't had Avastin . .Have had very good quality of life since then until I broke my hip on the ice over Xmas !! Had total hip replacement & Ca 125 now rising . But I am hoping it is due to all the trauma .

Mary x

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I was diagnosed with PPC April 2015 and had chemo & debulking surgery. More chemo in 2017. Am just about to start a drug trial (Sierra). Apart from times on chemo, my qualtiy of life has been good!

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Hello, I was diagnosed with PPC in June 2014. Just started third line chemo on carboplatin/caelyx. I’m lucky that I have had reasonably good health all the way through. However it doesn’t stop the worrying. I have picked huge amounts of info on this site which means I can ask my oncologist plenty of questions.

Sorry about your aches and pains and hope you feel better soon.

K.

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Hi Katie

Saw our oncologist at the end of February only to find out blood reading had jumped from 33 to 160. Not really got any symptoms but it looks like I will be back on chemo again soon. Another appointment on 21st March then probably a scan. Carbo/taxol for me did you have that at all? Is carbo/calyx any more gentle? Perhaps one of these days some of us will be able to get together.

Maureen xx

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Welcome Lileth! I am low grade PPC stage 3C, diagnosed 1/17. Carbo/taxotere x 6. Currently NED and grateful. Good luck in your journey. A wealth of information and support on here.

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