Julie40

Hi - I have the same type of cancer only diagnosed at stage 4. I did have a radical surgery and had a 9 hour operation to remove or repair a lot of what you have mentioned above and a few other sites. I had 9 weeks of carbo/taxol combo - surgery - 9 weeks of carbo/taxol. After all of that I had no evidence of disease. There is a lot of research to show that surgery is a vital part of removing the cancer in high grade and links to survival rates. I had a very poor prognosis over 3 years (weeks) but after the treatment plan above it stabilised me and gave me a chance to get back on my feet and a chance to manage the illness rather than the alternative. I have also had discussions with a world leading pathologist and two surgeons who all felt that a successful surgery was key. It is maybe worthwhile asking for a referral so that you can speak to a surgeon and let them explain in more detail why they feel it is necessary. It is no doubt a major surgery and like any surgery does have risks.

I had a lot of trouble with my bowels, my cancer had spread to my bowel so have been on docusate for the past 3 years. I take 4 daily and increase if I have not been to the loo on the second day. They are very effective and can be used long term. The pain could be coming from this as how it was explained to me that any pressure at all particularly constipation puts a lot of pressure on your internal organs. However I do think you should speak to the chemo hotline or your Oncologist to be sure as everyone is different and I would not like to be giving out incorrect advice.

I hope your wife feels better soon, the first is usually the worst as it is all new. Hopefully she finds a routine and will get to work out her good and bad days and be able to plan around them. There are lots of women on here that have been through this and can also offer advice.

Michael212 in reply to Julie40

Hi Julie40

Thanks very much for the quick and helpful reply. We will take your tips on board.

One of the challenges in dealing with symptoms such as pain is to understand their cause and meaning. I expect that we will soon get familiar with the cycle of chemo and the side effects, and learn how to prevent and manage constipation.

I do hope that your treatment continues to be successful

best wishes

Michael

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Julie40 in reply to Michael212

Thank you Michael. Note everything in a diary and you will definitely see patterns form and it makes life much easier and especially when it's not such a good day but your diary tells you tomorrow is then you have something to get you through.

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kristinaapril

Hi, though sorry to meet under this circumstance.

First off, I would nearly bet this is constipation pain, as my mom experienced the same thing! My mom has found that MiroLax has worked best for her, having one dose in the morning and one in the evening. My mom is currently off chemo (though starting back up on July 6th) and still takes a daily dose to help keep things regular ;).

The bloating could also be from ascites; a fluid buildup in the cavity, that typically goes away with chemo.

While the surgery is huge - it is also a very good indicator towards reaching NED (no evidence of disease). While, I think choosing chemo now is a good choice - I would recommend interval debulking too. Neo-adjuvant chemo (chemo before surgery) helps shrinks the tumors and allow for a better outcome in debulking (in stages 3 and 4). Typically, after the surgery, an individual completes a few more rounds of chemo to wipe out the remaining cancer. My mom's disease progression was to severe to first offer surgery, so she completed 4 rounds of neo-adjuvant dose-dense (weekly) chemo (taxol and carbo), had an optimial debulking (uterus, ovaries, fallopian tubes, spleen, omentum, and appendix removed), and will complete 3 more rounds of chemo. Moms surgery only lasted 2 1/2 hours.

I would try to contact another gynecologist oncologist, and hopefully he/she can better explain the surgery vs other treatment options!

Wishing you and your wife the best,

Kris x

Michael212 in reply to kristinaapril

Hi Kris

Thanks for your rapid response and helpful advice. It really does help to understand the range of experiences that people have, and how they come through it.

We hope your mother's treatment turns out to be successful

Michael

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Suzanne333

Hi.

I too am high grade serous stage 3. I had the debulking surgery last October. All visible cancer was removed. I've been in complete remission since end of January.

I had pains in my abdomen after the first and subsequent chemos. Was told this could be the cancer cells dying. The pains were small and sharp. More like prickling.

I didn't have any bowel issues so cannot comment on that. 🙁

I would like to wish your wife all the best. This site is wonderful with ladies (and men) discussing, advising and reassuring.

Xx

Hidden

Many of the anti-sickness meds given with chemo are constipating. In my experience (not universal), I weigh up which is the more tolerable: nausea or constipation. They tend to be prescribed on a one size fits all basis but we're all different.

As others have written, my understanding also is that full surgical clearance is a key step in optimising survival. This isn't a disease which gives us much leeway.

Wishing you both all the best and I hope you find this site a source of experience, wisdom and friendship.

Michael212 in reply to Hidden

Hi Mac27

Thanks very much for your helpful reply.

And a double apology: (i) for being so slow with my reply; and (ii) with my relpy being the equivalent of a group email, rather than a personal email.

With looking after my wife, holding down a busy job, and trying to make life as normal as possible for the two of us, I just haven't had time to come to HealthUnlocked.

But I will be back shortly.

Big milestone today: my wife's hair started to fall out. But she has a wig and very supportive hairdresser.

Holding thumbs for you (and everyone else in this group).

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thesilent1

Hi, welcome to our site. I have high grade serous stage 3b. I was diagnosed 4 years ago. I had surgery first, abdominal hysterectomy that included removal of uterus, tubes, ovaries and omentum and scraping of the peritoneum (lining of the abdomen) and scraping of the bowel. I then had 6 cycles of carbo/taxol and together this left me with no evidence of disease.

I too had low abdominal pain, as well as back pain, bloating, breathlessness and ii felt full very quickly when eating. The bloating was due to the fluid (ascites) that had gathered and this contributed to the breathlessness I was experiencing etc.

Constipation is a major issue. Your wife really needs to get on top of this as it can lead to a bowel blockage, which she really does not want to have. I'm speaking from experience! She needs to make sure she drinks lots of fluids with chemo, takes her laxitives and gets moving!

I think you will find that most ladies have had surgery, those that haven't are usually very upset that they were unable to have it. As Julie said, successful surgery by a gynaecological surgeon who specialises in cancer surgery is key to a successful outcome in this disease. Perhaps surgery at the half way stage might be an option for your wife as Julie herself had and many others too.

I wish her all the best. Please let us know how she is getting on. Ann x

Michael212 in reply to thesilent1

Hi Silent 1

Thanks very much for your helpful reply.

And a double apology: (i) for being so slow with my reply; and (ii) with my relpy being the equivalent of a group email, rather than a personal email.

With looking after my wife, holding down a busy job, and trying to make life as normal as possible for the two of us, I just haven't had time to come to HealthUnlocked.

But I will be back shortly.

Big milestone today: my wife's hair started to fall out. But she has a wig and very supportive hairdresser.

Holding thumbs for you (and everyone else in this group).

----------

ps One of my cousins had a child who, she said, came back from a French school exchange mute in two languages. You aren't related are you?

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HogwartsDK

Hey!

You have already had a lot of wisdom from the other ladies on this forum as constipation is a really difficult side effect of the chemo regime. I was diagnosed with stage one high grade and had the surgery (2 surgeries in all). I also had the Chemo which is recommended for high grade regardless of stage. I got through the chemo ok but I did find the impact it had on my digestive system very difficult! I did take lactulose but I also tried to use my diet to support my digestive system and took advice from the physiotherapist in the hospital after the surgery. She recommended Kiwi fruit and pears as well as prune juice. These do help though I was not able to develop a taste for prune juice!!!! In my opinion one of the most important tips with regards to both chemo in general and constipation in particular is how critical it is to keep yourself hydrated, your wife should make sure she drinks plenty of water before during and after each chemo session. I really cannot stress enough how important this is in conjunction with the medication. I did read somewhere that often the pain meds given during chemo have a significant role to play in constipation so its the combination of all of these meds that creates the difficulty I think!

Its not an easy road but your wife will get there and obviously you are providing her with much needed support.

I hope your wife gets through her chemo ok and wish you both the very best for the future!

D

Michael212 in reply to HogwartsDK

Hi HogwartsDK

Thanks very much for your helpful reply.

And a double apology: (i) for being so slow with my reply; and (ii) with my relpy being the equivalent of a group email, rather than a personal email.

With looking after my wife, holding down a busy job, and trying to make life as normal as possible for the two of us, I just haven't had time to come to HealthUnlocked.

But I will be back shortly.

Big milestone today: my wife's hair started to fall out. But she has a wig and very supportive hairdresser.

Holding thumbs for you (and everyone else in this group).

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NotHappy56

I had taxol/carbo. First time landed me in the hospital. WBC, RBC and platelets all crashed at the same time. Was in hospital 5 days. Could not pee (had to get a catheter) and could not poop. Totally miserable. I drank boost for vitamins. Prune juice for constipation. It helped a lot. Next treatment they had to lower my dose. They also put a Neulasta patch on my arm. She may want to have bloodwork checked. They told me the first few days are the worst and you are supposed to feel better by day 5. If she is not feeling better, she should have bloodwork done. That will tell her more. Also, stay away from morphine and other opiods as they cause constipation. I was given a lot of morphine.

hcatherine

The symptoms will ease in a while hopefully. It may be an idea to seriously consider the operation to have as much cancer as possible removed. I did this and have no regrets at all.

NotHappy56

I would not delay surgery. If they offer it, you are lucky. I am inoperable and Stage 4. I took both of those drugs and had a lot of problems. So many that I was hospitalized when my red blood cells, white blood cells and platelets all crashed at the same time. I had a lot of belly pain. I was give 4 different very strong antibiotics and never ending fluids to keep me from organ failure. I gained 27 lbs in 5 days and nearly died. I had to be quarantined the entire time. My body was unable to fight off anything. I have had severe peripheral neuropathy in my hands and feet ever since. My platelets have never gone above 75,000 in 14 months. I had to have a bone marrow biopsy. They do not know what to do to fix it. I am off all medication for the cancer and have been put on very strong painkillers 24/7. There is nothing else they can do. I have had Granulosa Cell Tumors for 6 years in May. I have fought and fought. Now it seems there is no other things they can try. My platelets are too low for any operations. I wish you both well. I live in the US. We cannot go anywhere due to my high risk status.