Gutted

[Samjane]

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

[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 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]

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 in reply to kristinaapril]

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

[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 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 in reply to Samjane]

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

[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]

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]

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 in reply to Caroles1]

Yes I’m sure I can thank you xx

[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]

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]

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

[Samjane in reply to Maus123]

Thank you xx

[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 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]

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 in reply to Lizchips]

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

[Hidden]

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]

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]

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]

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]

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]

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 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 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 in reply to Emalou71]

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

[Emalou71 in reply to Samjane]

Yes and lots of rest, good luck with it ❣

[Hidden]

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 in reply to Hidden]

Thank you, how you finding it? Xxx

[Hidden 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 in reply to Hidden]

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 in reply to Hidden]

Meant thank you xx

[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]

Big hugs x x