Having a wobble!: Hi all, hope all is well with... - My Ovacome

My Ovacome

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Having a wobble!

Alifit
Alifit

Hi all, hope all is well with you.

Having seen my consultant yesterday, it seems that the Carbo/Caelyx combo may not be working. I had my bloods done on Thursday so the results were ready on Friday, and realised that CA125 hadn’t been requested, so I asked the phlebotomist to do it, which she did. When I started this chemo my CA125 was in the low 400s, now it has gone up to 722. Needless to say this alarmed me slightly! The consultant said that it hadn’t been checked at my last blood test (before my second chemo), so she can’t say if it has gone up this time because it may have been higher last time! I’m having a scan after next weeks treatment which should show if it is doing anything, but I’m having doubts at the moment. I have continued to suffer from difficult bowels, abdominal pains and non ascites bloating.

My scan which I had in June has finally been reported upon - the MDT had reviewed it, but it hadn’t been done by a radiologist. I now have lung nodules, additional soft tissue in various places, increased nodularity and tethering! Who knew! From the summary, I think the main worry are the lung nodules - the word metastatic has appeared for the first time, but it transpires that the scans I had at my first hospital didn’t include my chest (!) so the nodules may have been there for longer.

Oh, and I’ve been having pains in my back and leg so have to have an MRI too!

This isn’t an easy path for any of us, is it - I know that many of you lovely folk are having a much shittier time than me - I’m just having a temporary loss of positivity which I hope will return soon.

Just writing this down (albeit in a slightly garbled style), and sharing with folk who may have been there helps enormously, so thanks for being here for me.

With my love and very best wishes to each and every one of you, Ali x

31 Replies
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My last ct showed a lung nodule too so I am also worried. My ca 125 is back at 11 which is good. The MDT ordered a pET scan of which I am now awaiting results....... terrified. Have you had a PET scan for your lung nodules or biopsies - what have your team recommended as the next step? Would be interested to compare? X x

Alifit
Alifit in reply to Eriksendi

Hi,

It’s great that your CA125 is 11 - I’m not sure mine has ever been there! I’ve never had a PET scan, I did mention it once, but my team seemed to think that CT gave them enough information. The plan seems to be to review after the next scan, so one more chemo, then imaging, then appointment. I’m not sure how they will proceed with the lung nodules, I guess they’ll decide after the next CT.

Thank you for your reply - I hope your lung nodules prove to be nothing, but do let me know and I’ll ask the question when I see my consultant next.

Best wishes to you, Ali x

Hello Ali,

So sorry to hear this. I’m sure I have read other posts where ladies say that their CA125 went up initially with Caelyx?? (Was it Ellsey??). Not sure why this should happen, but maybe it irritates (inflames) the bowels? As you say, you don’t know how long the lung nodules have been there...

What does your team think?

Thinking of you & wishing you strength for the next step Ali.

Linda xoxo

Alifit
Alifit in reply to Seasun36-uk

Ah, thanks Linda.

Yes, I remember that lots of women have said that Caelyx can raise your CA125, I’m hopeful that is the case with me! My team seem to want to wait until the next scan after Tuesday’s chemo before they make a judgement.

I think it was just a lot to think about yesterday and I needed some kind and supportive words, so thank you so much for your response.

With my love, Ali x

Hi Ali. No wise words from experience but want to send you my love and support for the shitty time you are having just now. I really recognise the agonising uncertainty that comes with this bloody disease. Nothing is straightforward and everything can seem like a guessing game at times so it’s not surprising you’re having a bit of a wobble. The great advantage of our merry band is that there will be ladies with relevant experience to help you. Here’s hoping your great positivity will be back with you very soon. Love Jo 🌺🌼🌸🌻🌹

Alifit
Alifit in reply to ShropshireJo

Thank you Jo.

I have a managed a reasonable day without too many abdominal problems, so feel a bit better. I’m girding my loins for the chemo on Tuesday, starting with taking more laxatives to make sure I don’t get bunged up again. I’ve kept busy and have done all my washing, organised my drugs and been to a vintage fair up the road! Oh and I’ve tried to mend the vacuum cleaner which now lies in bits on the bathroom floor waiting for me to replace the 17 screws I took out, just to realise that it couldn’t be mended!

The good vibes everyone has sent has clearly done its job, so thanks again Jo. The shit hasn’t left the building, but I’m ready to stand up to it again.

With very much love and good wishes to you, Ali x

ShropshireJo
ShropshireJo in reply to Alifit

Good to hear you had a better day yesterday and best of luck for tomorrow. Lots of love Jo 🌺🌼🌸🌻🌹

Hi Ali - you are certainly entitled to a wobble. It is frustrating when things are not done in a joined up way.

Hope that now you have got them doing that with baseline scans and the correct bloods you will be better prepared to follow the plan.

Best wishes

Fay

Alifit
Alifit in reply to Petrolhead

Hi Fay,

I think some of the problem was having to move hospital - they do things differently, some things for the better, some not. I’m onto it now and have done some research to decipher the scan report, so I know what questions to ask.

Thanks Fay, hope all is well with you, lots of love Ali x

Sending you a huge hug xx just think that your a weeble they wobble but don’t fall down xxx

You’re entitled to a wobble we all are xx

Hoping you get some answers and can feel more reassured soon xx

Alifit
Alifit in reply to BeeWild

Thanks for the hug! It really helped. I’m ready for chemo and will deal with the uncertainties when I see the consultant next.

Feeling much less wobbly now and ready to fight again.

With love to you, Ali x

Hi Ali, I have just had my third Carbo / Caelyx for first recurrence . The consultant explained that Caelyx does most of its job at the end of the treatment and very often CA125 goes up after the initial infusions . This seems to be backed up by the notes added on this forum last week re CA125.Hopefully your next CT scan will be more reassuring , that’s my next hurdle to in a couple of weeks. Good luck lovely , xxJuliaxx

Alifit
Alifit in reply to Juleswhee

Thanks Julia, I’m hoping that it is doing the job. I think seeing the figures in print brings a stark realisation to the situation, despite knowing the facts. The scan will hopefully bring good news. I hope all goes well with your scan - I’ll be thinking of you.

Lots of love and thanks to you for your support, best wishes, Ali x

I've had a lung nodule for 3 years that hasn't changed at all despite progression all over peritoneal cavity. Hopefully it's unrelated. Xxx

Alifit
Alifit in reply to LittleSan

Thanks so much - that is really reassuring.

Hope you are as well as you can be, love and best wishes, Ali x

I've heard too that Caelyx can take some time to kick in, so let's hope your forthcoming scan shows good news. Hope the MRI scan shows something minor too.

It's so worrying waiting for all these results. All the best!

Thank you - I’m hoping the Caelyx is loitering with intent and will show results soon. My back and legs have stopped hurting - no idea what that was about, but I guess it’s still worth having it investigated.

Love and best wishes to you, Ali x

Hi ali

Sorry to hear your bloods have gone up i cant offer any help as you know i am new on here just wanted to say i hope everything resolves soon .

Sending lots of love tracey xxx

Alifit
Alifit in reply to Trossyann

Thank you Tracey, it’s good to have your support. The lovely women on this forum have got me through more than one wobble for which I will be ever grateful.

Best wishes to you, Ali x

I can’t give any advice from experience, I just want to let you know I will be thinking of you and sending as many positive wishes as possible. Hugs and love ❤️Xx Jane

Alifit
Alifit in reply to Cropcrop

Thank you Jane, positivity received and absorbed!

Hugs and love back to you, Ali x

Hi Ali. So sorry to hear that you are wobbling. I think the girls are right about caelyx and that it's a slow starter. I know I was stopped from finishing the course but I'll sort that if I can. Having gone into the abyss since July 's fake news, I'm hardly able to say, be positive. But if you can stay reasonably calm and focused I'm sure it helps. I was having other emotional problems unrelated to cancer on top of everything else but I have learned a tough lesson about myself and that is that I go down the same negative path as others do and I'm really cross about it. So I am sending my love and support to you as being at the bottom of the mud pool is awful and I don't want you to feel so sad and scared. Big love xxxxx

Alifit
Alifit in reply to Kryssy

Evening Kryssy,

I’ve pulled myself together today and have kept busy getting ready for the Carbo/Caelyx onslaught on Tuesday. Mostly due, I have to say, to the support and kind wishes on here.

I have been down many negative paths in my life, despite knowing how destructive it can be. What I have learned since my diagnosis though is that the support and love of friends, relatives and strangers can get you through a lot.

The fear is still with me, as is the anger that this has taken over my life, but with all the good wishes I have had, I have regained a modicum of positivity.

With all my love Kryssy, Ali x

Hidden
Hidden

Hi Ali so sorry to hear that you’re going through a difficult patch. I always tend to wobble when my CA125 goes up and it did at the start of my chemo Carbo/Gem- it didn’t start to go down until after a couple of doses - I’ve now finished my treatment and CA still in the 200’s so I’m not sure if it’s worked this time - I have my scan this week too. I also found out I have a small tumour on lung and liver from last scan and I can understand your concerns - I do have a few days of feeling low but soon pick myself up and just enjoy each and every day the best I can. Just keep your positive head on and treat yourself doing nice things with your friends and family - I guess we all have to learn to live with this awful disease don’t we? All the best with your scan and fingers crossed 🤞 for a positive result - thinking of you love Deb xxx

Alifit
Alifit in reply to Hidden

Thanks lovely - I don’t know why it hit me so hard this time - I think I was a bit cross with myself for not asking the right questions. Part of my problem (and I know I’m not alone) is the feeling that I’ve lost control. I’m ready now for the chemo and ensuing scan.

I do hope your scan shows stability for you. Lots of love, Ali x

Hello Ali.

I hope to give you a bit of advice from my experiences battling ovarian cancer. I truly pray that, even in the smallest manner, it helps you. I'm dx stage 4 ovarian cancer in 2013.

You mentioned your bowel problems. If you are like many of us, then you have "adhesions" in your abdomen. For me, the adhesions are brutally painful. I explain them to doctors by saying, "When I eat, or when already-present food begins to move in my intestines, it feels like rocks are going through my intestines... painfully scraping the intestinal walls as they move."

I'm on a maintenance dose of Dilauded (hydromorphone) to deal with this everyday pain. I wouldn't eat any food if I didn't have this medicine. On the negative side of things, we all know what narcotics do to our digestive system. "Narcotic-induced constipation" is an ever present reality for anyone who takes narcotics on a daily basis. I do not know your situation, so I won't presume that you take some kind of a narcotic on a daily basis. If you do, then I would like to tell you about a prescription medication that changed my life, allowing an end to my narcotic-induced constipation. If you don't, then please disregard my advice.

About two years ago, my doctor gave me a sample of a new anti-constipation medicine. The name of this medicine is Amitiza. All the standby constipation medicines didn't work for me. With Amitiza, I take one pill before bedtime. By the time I wake up in the morning, it has produced a bowel movement.

With your situation, I'm concerned that the constipation might be contributing to some of your other pains. Have you ever heard of "referred pain?" I get it quite often, especially when I'm constipated. My referred pain always locates itself in the weirdest places on my body, so weird that I would never think that it would have a connection to my constipation. Then, I would fix the constipation and the referred pain would go away.

Once again, I don't presume to know anything about your situation. I just saw your entry, mentioning bowel difficulty and some pains that you are experiencing, and hoped that some of my experience might help you. Good luck with everything!

Cheers!

Julie

Alifit
Alifit in reply to StKier

Hi Julie, thank you so much for your reply.

Your description of your constipation is really vivid - I can easily relate to it! Opinion for me seems to point in the direction of slow motility, disease progression and possibly adhesions. I’m on top of the constipation at the moment, but that will change after chemo - I’m upping the laxatives I use, but I will certainly mention Amitiza to my team. I’m not quite at the stage of needing a stronger pain killer, but will bear your advice in mind for when I do.

It has been suggested that the pain I have been having in my back and legs may be referred pain although it seems to have gone away for the moment. It needs investigating I suppose.

I’m really grateful that you took the time to reply. I hope all is as well as it can be with you. Best wishes, Ali x

Hi Ali. I don't have any relevant experience to share, but want to add my virtual hugs. Surely it's human to worry about the disease progressing, especially with bowel issues and pain in the mix, and "under the influence" of chemo.

I'm glad the leg pain is gone for now though, and that you've taken some heart. Hope the laxatives (does Movicol help?) and chemo work as planned, and will reduce both the lung nodules and the pesky ca125 eventually. xx. Maus

Alifit
Alifit in reply to Maus123

Good morning Maus,

Thank you for your message. I guess I feel like everything is conspiring against me at the moment. I’m starting back on Laxido (it’s the same as Movicol except it purports to be orange flavoured!) today and will carry it on until the diarrhoea kicks in! Joy!!

We will soon see if the chemo is doing it’s job.

I am grateful to you for your virtual hugs and I hope all is well with you.

Lots of love Ali x

Maus123
Maus123 in reply to Alifit

All is quiet on the Bavarian front at the moment. Finishing rehabilitation this week; will report :). Orange flavour sounds yummy. I'm going to have a few good old plain Movicol drinks today as my bowels have tuned into lazy mode (first time in weeks). Prost! xx. Maus

Hi Ali

Don’t they just love dropping in an extra little snippet here and there. If it’s any consolation when I was on Carbo only my CA levels went up and down like a yo-yo. It still is with no treatment. It can be just down to inflammation it doesn’t have to be cell growth.

My neck nodule and liver liesion remain the same size. It’s 20 months now.

I remember my team talking about mets and I jumped in with, mets? What mets? They said oh we thought you’d have guessed mets are par for the course and rattled off where they were! I was crushed. That was three years ago

So don’t worry my lovely they have a box of frogs and every now and then they let one out. It doesn’t mean anything is worse. Otherwise we’d be offered other options

Good luck with the next dose. If it goes up again then I would want answers. But it may go down 🤞🏻

LA xx

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