Gutted : It’s back 😢. Some nodules on stomach... - My Ovacome

My Ovacome

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Gutted

Samjane profile image
36 Replies

It’s back 😢. Some nodules on stomach lining. So back to chemo. They were surprised how well I look and am! Anyway Carbo and Caelyx once a month for 6 months. Both Gyne and onc Doctors both positive as I’ve had such long remission. Anyone else had the same regime please? Xx

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Samjane profile image
Samjane
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36 Replies
Lizz49 profile image
Lizz49

So sorry you didn’t get the news you’d hoped for today...but good that the docs are positive and confident this round of chemo will sort things out. Sending you tons of best wishes as you start chemo! I’m on my first lot after being recently diagnosed, carbo/taxol and finding it manageable so far. I’m sure there are some ladies on here on the same regime you’ll be going on and who can offer support and words of wisdom.

Big hugs Xx

Samjane profile image
Samjane in reply to Lizz49

Thank you, yes carbo/taxol is good stuff! It works well!! Hope you keep well on it and if you want to ever chat or message me please feel free

Xxx

kristinaapril profile image
kristinaapril

So sorry to hear it wasn't a clear scan. It seems that your team is optimistic that chemo will wipe the bugger out.

Sorry I don't have any advice re the carbo and caelyx together - but I'm sure some other ladies will chime in with their knowledge!

Sending you some calming vibes,

Kris x.

Samjane profile image
Samjane in reply to kristinaapril

Thank you, yeh I’m gutted but they are confident to I’m gonna crack it again xx

Katmal-UK profile image
Katmal-UK

Im so sorry to hear yr news. Take heart that you it is possible to get a longer remission than yr first. I know from experience. Hope yr chemo goes well. Big hug xx Kathy xx

Samjane profile image
Samjane in reply to Katmal-UK

Is it really? They are confident and quite laid back about it lol!

I’ll keep in touch, you have been massive help to me before xxx😘

Katmal-UK profile image
Katmal-UK in reply to Samjane

Yes really. Im in my longest remission so far. hold that thought xx

jools53 profile image
jools53

Always seams worst when you deal with it again, not sure why! Maybe we let our guard down and enjoy the peace! But hey ho! I said here I go again after many tears! Carbo/gemza reacted to carbo this time so gemza only, now on avastin! 3 very small nods on liver/spleen/gallbladder and shrinking, but ca125 rising due to avastin 75 last count! Keep on until the next step etc

My moto Kick It’s Arse 😂 😘😘

Joanie12 profile image
Joanie12

So sorry to hear your news, its such a b.....r but you sound as though you will rally your determination and fight the beast attain. You go girl!!!!! Good luck

Caroles1 profile image
Caroles1

Sorry love, that’s horrible news, but, we have said we have done it once, we can do it again and you had an amazing remission, if they aren’t worried,nor should you,

Love Carole xxx

Samjane profile image
Samjane in reply to Caroles1

Yes I’m sure I can thank you xx

Katiebairdie profile image
Katiebairdie

Hello

Like you I am on carbo/caelyx, third line. I find it not too bad but we are all different. Fatigue and constipation are the worst things for me but have meds for both I’m sure you will manage well Good luck

Maxjor profile image
Maxjor

Samjane---just finished Carbo/Caelyx and found it much easier to go once every four weeks than once every week with Frontline. I had a bit of nausea a couple of days after chemo but when it went away, it was a wonderful 3.5 weeks till it was time for the next. Ca125 when I started, now at 8.

I only had my one remission from Frontline so I cannot tell you about a longer one for me (yet?) but many on this site had a longer one second time around. Good luck! oxox

Maus123 profile image
Maus123

Ah crap, sorry about the news Samjane. No experience with caelyx here but hope it will get rid of those nodules. Hugs.

Samjane profile image
Samjane in reply to Maus123

Thank you xx

ellseybellsey profile image
ellseybellsey

Samjane sorry to hear your news, I have just been dx for reoccurrence, I am having 2nd surgery but not sure yet what chemo I will be on.

I pray your new treatment plan smashes it.

Ellsey xx

Samjane profile image
Samjane in reply to ellseybellsey

Thank you, feel numb this morning but work should keep me occupied! Hope a goes well for you too

Sam xx

Lizchips profile image
Lizchips

Sorry, not what I wished for you, it sucks! Ask about IP chemo I know its not standard in the UK but if they are willing. It will work. I wish they would use it. 4 yrs for me cat scan was clear. IP chemo works. Please ask, demand it. Remission much longer. ❤❤Liz

Samjane profile image
Samjane in reply to Lizchips

Ah I’ve not heard of that one. Caeylx and carbo this time but they are positive xx. Thank you

You were feeling it in your bones, weren't you, but a sod nevertheless.

It's to your advantage I think that you look and feel well... it's the best way to start treatment and you may well carry on like this throughout it. I did an evening class on chemo days.

I found carbo/caelyx by far the easiest of my 5 different combos.

Just make sure to be prepared and take action before it's needed on moisturising and bicarb of soda in the house.

There've been a number of conversations about dealing with caelyx which you could pick up using the search button.

Good luck xxxx

Supergran38 profile image
Supergran38

Morning Samjane

I started Carboplatin/Caelyx in January 2018 after a two year remission following 18 week Taxol.

First session not too bad, but the second one completely knocked me off my feet. Really bad fatigue and couldn’t function properly.

Managed to get an appointment to see the consultant who could see I was struggling, and she decided to reduce the strength of the chemo. Third session was delayed a week as the chemo had battered my blood levels.

Have had the third session now and have found it so much better. Rested for the first week but now able to get on with everyday jobs.

Like others says, everyone is different and what suits one others may struggle.

Good luck with your treatment. Xx

SCWI profile image
SCWI

Hi Samjane

I am on second line Carbo/Caelyx too and have written a few replies about it. The first one really knocked me off my feet with sickness but I went into it a bit Iill with bowel trouble and sickness caused by the recurrence. The second one was fine and they gave me a good anti sickness pill called Emend as I said to another lady earlier. Having a recurrence is awful, my CA 125 had been creeping up for over a year with nothing on a scan, so I was getting used to the idea, but still it sucks. However now I am on the chemo I feel happier. I had been trying lots of alternative things with no great luck. Hope all goes well for you, the chemo apparently works really well if you have had a long remission, so three years was good. I had two years. Hugs, Sophia xx

CarolynA profile image
CarolynA

Hello. I have only just read your posts and am so sorry about your anxiety yesterday, and the outcome. I’m sending you a big hug and lots of positive thoughts. Love Carolyn 🌸 x

hebadheir profile image
hebadheir

Sorry for the results ,be strong ,and take care lovely .. make sure to avoid sugar and have the right alkaline diet and herbal supplements to help the chemo to work more effectively and reduce the side effects .. Good luck dear

Emalou71 profile image
Emalou71

Sorry you didn't get good news, I had Caelyx for a reoccurrence and it did the job! Great the team around you are positive and good to hear you feel well, good luck xx

Samjane profile image
Samjane in reply to Emalou71

Oh that’s good it worked they told me it is good stuff! How did you find it? Thank you xx

Emalou71 profile image
Emalou71 in reply to Samjane

Not to bad really, but I did get shingles a few times which made me feel crappy and I was very tired a lot, I did manage to keep working just taking 10 day off after each cycle and even managed a week in Cornwall so id say pretty doable. Xx

Samjane profile image
Samjane in reply to Emalou71

Wow that’s pretty good. Apart from shingles 😢. So just pacing oneself is best x x

Emalou71 profile image
Emalou71 in reply to Samjane

Yes and lots of rest, good luck with it ❣

Hi I am on first reoccurrence & I have nodules on my peritoneum I’m on caelyx having my 2nd dose this Friday, it can all become a bit overwhelming trying to remain positive & up beat.

I wish you well as I do all of our lovely ladies. Xxx

Samjane profile image
Samjane in reply to

Thank you, how you finding it? Xxx

in reply to Samjane

Hi it’s different from last time (carboI taxol) so getting used to different regime no hair loss which is good as my hair had grown back & I was getting used to it again. I’m more emotional this time which I don’t understand & I am less positive probably because it has come back and I really hoped it wouldn’t (naive I know) my husband is struggling more this time because he really thought I’d been permanently fixed & now he is constantly worried about me & our future. But I am going to keep fighting because there is no other option. But god I pray for a magic weans to fix all of us. Take care xx

Samjane profile image
Samjane in reply to

I found that regime quite rough and didn’t cope well. I knew it would come back and 90% sure it was back so not shocked. I think keeping hair helps. Maybe emotional as you say cause it’s returned? I’m a bit like that, plus things going well at work, just booked holiday money good then all comes crashing down. Hubby is more positive than me he is just worried about me. I’m going to give it another kick we have no option at all. You too ha m you xx

Samjane profile image
Samjane in reply to

Meant thank you xx

Lizchips profile image
Lizchips

IP chemo is used in the US, it works. UK seems to know about it but maybe due to cost doesn't use as first line like here.

Perthgirl profile image
Perthgirl

Big hugs x x

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