Still getting symptoms after 6 infusions of Chemo; abdominal pain and groin pain swollen stoma, anyone possibly shed some light on this?

[Meridian14]

Hello ladies, I hope many of you managed to enjoy a lovely Christmas. Happy New Year to you all. I hope 2020 is a kind year.

During chemo I had the usual shooting pains, abdominal pains etc that came and went - pains that became quite normal but that would only last a day or so and intermittently return and disappear. I had my 6th (final) infusion (Carbo/Taxol) at the beginning of December. Soon after, I started to get a stitch under my lower right rib, I then started to get pain in my lower right abdomen, then a tight stitch type feeling up the length of my right side. Non of this has gone away.

My first 4 chemo rounds resulted in my Ca125 dropping to 6 (from 135 before surgery). I have not asked my Onco about my more recent ca125. I told my onco about these pains but as yet i have not been given any possible explanation of what might be causing the discomfort and pain.

I told my Onco that I thought I was looking and feeling more bloated than usual (and I’m certainly finding that my appetite has changed). I’m only eating a small bowl of cereal then one mean early evening, I don’t particularly feel very hungry. My Onco said that I did not look obviously distended. She palpated me and felt my abdomen and said she could not feel any bumps. But I know I’m definitely more bloated, I can feel it.

I’m trying not to worry but it’s the same type of pains that I had when I initially got diagnosed with OC 3c serous high grade.

I have a stoma and it is swollen a lot of the time now and I’m definitely passing more wind than before.

I had a CT scan on 24th Dec and i should receive the results on 9th Jan. I’m praying that it’s not going to show anything sinister continuing.

After surgery back in June i still had residual cancer on my liver. I’m continuing to have Avastin at the moment. But I’m worried that these symptoms have spread and are not subsiding at all. When I take a deep breath I feel like a stitch type discomfort all in my sides and under my ribs, and I have a cold dull ache in my lower right abdomen with some nipping/shooting pains.

Since my 3rd or 4th infusion I also started to experience a throbbing, mild to moderate pain, in both sides of my groin. This also has not abated. It comes and goes, but mostly it comes.

Apologies for the long post, any light shed on what might be going on and possible explanations are greatly appreciated.

Lisa.

[Maxjor]

I am so sorry you are going through all this pain first of all, but second of all, the worry that accompanies it can be even harder. It was good to read you have scan results coming up in about 2 days but did you have all these symptoms prior to getting the scan? It sounds like you did so that should help get to the bottom of things too. I do not have a stoma but could the swelling of the stoma cause shooting pains elsewhere? Did your doctor comment on the swelling at all or think it was unusual? Sorry to ask more than tell but I am very hopeful your scan will put you at ease and I would pressure your oncologist to find answers to the shooting and other pains you have. Should not be the case unless this is how you react to chemo in general. (I sometimes get pains during and after chemo for a day--I always thought it was my cancer being attacked by the chemo--but then it goes away and I forget about it. Yours does not seem to be going away so I would keep asking till you get answers. The scan is a good place to start. Wishing you luck and hope you will keep us posted. oxoxox Judy

[Meridian14 in reply to Maxjor]

Hi Judy, thank you for your response. Yes, I did have the symptoms before the scan was taken although the symptoms were not as intense as they are now. They have gotten worse over the past couple of weeks and have not subsided at all. If there is anything untoward happening, I’m hoping the scan will pick it up.

I too experienced lots of different types of pains during chemo, especially in the beginning; the first two or three infusions, and then like you, thereafter, the pains were mainly during the first few days after infusion.

This discomfort and pain feels very different from the pains I experienced during chemo. My last chemo was 3rd December. These pains started around 6th December, initially under my right rib, it then very quickly spread down my right hand side, into my lower right abdomen, and now I’m getting similar on the left side. I guess the reason I’m feeling worried is because it’s similar pain to what I had just before I was diagnosed, and it has not subsided, it’s persistent, constant everyday. I am taking pain killers.

Jenny (post below) was told her stitch like pains were due to post op adhesions. If that is the case, I’m wondering why I’m experiencing them now 6 months after surgery and why I wasn’t experiencing them before.

My stoma has caused some shooting pains around the stoma itself but as for causing shooting pains elsewhere, hmm I’m not sure. My Oncologist did not mention anything about it during our last meet. I mentioned it was swollen and that I felt bloated. She felt my abdomen, palpated me and said I did not feel obviously distended. It used to get swollen during the first week of chemo, but then it would calm down and be fine the rest of time until the next chemo. But now it is regularly swollen. I think I’ll get in contact with the stoma clinic once I’ve had the meeting with my Oncologist this Thursday.

I get my scan results this Thursday. Thank you for being hopeful that my scan will put me at ease. I will keep you posted. I will definitely push for answers.

Lisa xx

[Maxjor in reply to Meridian14]

You are on top of all of it and I would just make sure you write your questions down so you can ensure all are answered. Palpitating you around a swollen area is good---it puts your mind a little at ease but you still need to know why you have the pain, discomfort or swelling, even if they think it is nothing to worry about--why do you have what you did not have before in terms of these symptoms. I know tomorrow is the day you find out about the scan and hopefully that will provide some (benign) answers! oxoxoox Judy

[27-359]

I also got stitch like pains, but was told that these were due to post op adhesions.

Jenny

[Meridian14 in reply to 27-359]

Hi Jenny, thank you for your response. This is good to hear that it could possibly be post op adhesions causing the pain.

Where were/are you experiencing your stitch like pains? I had a lot removed, omentum, peritoneum, appendix, sigmoid section of bowel, bladder lining, disease cut out of my bladder, scraped off my spleen, stomach and liver, so i guess it could make sense that it’s adhesion pain.

How long after surgery did you start to experience these pains? I did not have these particular pains during my 5 months of chemo, the pains started a couple of days after my 6th chemo infusion. So if it is pain caused by post op adhesions, I’m wondering why I’m getting them now 6 months after surgery, I would have thought that I would have started experiencing them sooner.

Thanks for your response, Jenny. Hopeful now that that’s what it might be.

Lisa x

[27-359 in reply to Meridian14]

I am now more than two years post surgery and experienced the stitch like pains up until about a year ago. Having said that, I had an op for a blocked bowel just over a year ago and that was caused by adhesions!

[Meridian14 in reply to 27-359]

Oh wow, you can experience those stitch like pains a year or more after surgery. Well, I’m kind of glad to hear this, hoping that’s what I’m experiencing. Although, very sorry to hear adhesions can clearly be problematic and caused you a blocked bowel. Hope you are recovering well from that op.

Best

Lisa

[Hidden]

Hi Lisa. I felt really, really unwell after six rounds of Carbo, Taxol & Avastin. Not an inch of me felt right. It will take you a few months to feel even half normal. It’s a tough regimen. Avastin also caused me to have strange pains & twinges all over. You’re doing all the right things by informing your doctor & getting a scan. There’s no more you can do. Waiting for results is a nightmare. I think it’s possible that your symptoms are all caused by the chemo. I found that combination to be far tougher than Carbo, Gem & Avastin.

Make sure you’re drinking lots of fluids. Good luck with the results. Rest lots & provide yourself with as many distractions as possible. Have you seen “Anne With an E” on Netflix? I recommend it highly. It’ll sweep you up and take you away from your worries.

Please let us know how you get on. I’m sending hugs & strength & patience your way.

Anne 🤗🤗🤗🤗🤗🤗🤗🤗

[Meridian14]

Thanks for your response Anne, just feels that after all the chemo, I shouldn’t be feeling these symptoms, and I was not feeling these symptoms during 5 months of chemo - lots of other symptoms, yes, that I got to recognise were chemo side effects/symptoms. But these suddenly started after my final infusion, and have steadily got more intense over the past two weeks.

I was standing more upright and hardly experiencing any pain towards the end of each chemo cycle, albeit totally struggled with fatigue. Pain was minimal towards the end of 3rd, 4th and 5th cycle. These particular pains started up 3 days after my 6th cycle and they have not subsided. I’m stooping over again in discomfort and pain and can’t sit for too long, I have to lie down. So I almost feel like I’m going backwards.

It’s only 3 days to wait until I get the scan results, so until then I will distract myself and try not to worry. I will have to check out Anne with an E - thanks for the tip. I’m currently watching The Morning Show on Apple TV, with Reese Witherspoon and Jennifer Anniston. And I’m also watching the Crown, although I don’t find it as good as the first two series. Good to get hooked into a good series though. 👍🏼

Hugs to you too Anne.

Lisa xx

[AlaNtO]

A tough road to walk. You have done very well so far. Taxols do seem to have a tendency to allow the body to work up a tolerance. I found them very good to start with until the tolerance thing kicks in. The USA is working on NSAIDS to counter this. My experience of Avastin was that despite its incredible cost the best it did was maintain a status quo, i.e. no improvement or worsening. I am now on a mix of Cisplatin (Lance Armstrongs drug) and radiotherapy and its giving me a hard time with nausea being the main culprit, although it is working. Hang in there and never ever give up.

[Meridian14 in reply to AlaNtO]

Thank you. So if Taxol has worked up a tolerance, it’s no wonder I am feeling this discomfort and pains now as opposed to when I was receiving chemo.

Sorry to hear about the nausea but great to hear that Cisplaton and Radiotherapy are working for you.

All the best. X

[Meridian14]

Hello all,

Just to update. I received my CT scan results on 9th Jan. the cancer on my liver has shrunk to half the size. Hopefully the Avastin will keep it at bay.

The CT scan also shows that I have a herniation at the stoma. No wonder my abdomen was sticking out on that side and my stoma was swelling more than usual.

I have received some support garments to wear, although first attempt at wearing a pair of support pants that support the abdominal area caused a ‘pancaking’ in my stoma bag and leakage, which was pretty unpleasant, still working out the best way to support the hernia without having toileting problems. I have seen some other options on line that I might try and I’m waiting on a phone call for someone to come round and carry out a fitting.

Thankfully the stitch type pains have finally calmed down. I still have pain in my lower abdomen on the right hand side when my Oncologist palpated me, but she said she did not know why I was experiencing this pain as nothing showed on the scan in this area.

Still getting the throbbing groin pain down both sides of my groin. When I have mentioned it to my oncologist I have not been given any explanation for this, I guess I just have to put it down to side effects.

Hope you are all doing well xx