In your best signing voice..... "Here we go again, la di da de de, all good pals and jolly good company!"

Yes ladies (and a few gents) I think I have finally gone mad.

As you know from previous posts, I am a-symptomatic, and I was on a wait and see what happens. Well it's happened......rising CA125 now at 3821 and in the oncologists words, "things are growing".

Spots here there and everywhere, but the main ones, liver up from .8cm to 2.4cm, spleen up from 2cm to 3cm and the most risky one stuck to the bowel is now 5.5cm. This is one they are most concerned about as it could cause a blockage in the Stoma and cause big problems.

The plan is Caelyx and Carbo starting 7th April. I knew it was not a question of IF I needed chemo, but WHEN and now is the time.

Any suggestions, ideas, tips and hints on how to get through this mixture would be appreciated. You are so knowledgable and a great support.

Love to all. Irene xxx

37 Replies

  • Hi, I'm not sure if I can offer many good ideas and suggestions but I'll give it a damn good go! Keep giving it everything you've got, try to keep as positive as possible, sleep when you need to, accept help from others when you need to and do all the things you love doing whenever you can :) I've read lots of good things about all the successful treatments and although I haven't been through this combination there are women on this site who have and its been extremely successful. Wishing you lots of luck and best wishes. Andrea xx

  • Thanks Andrea. Not looking forward to it, but hey-ho, ladies have survived it and lived to tell the tale, why should I be any different.

    Keeping strong, staying focused and remaining positive.

    Take care, Irene xx

  • Hi Irene

    I completed the 6 courses finishing Dec 23rd.

    I found that the CA125 moved down by 500 and then 400 after the first 2 so when my bloods were down from the 3rd I should have expected it after the hit I had taken. I missed a couple on the run with this problem and started on injections to boost the bloods up. the CA didnt come down below the 37 after the completion.BUT we had a reduction so it must have worked. I must admit I was disappointed. But blood tests after the course the CA125 had come down!! Well I am due a scan on Tuesday so I will see how good it was. I have been feeling great and have just had a two week holiday thought I would get it in quick.

    I made sure that I had mouthwash Vit B as an extra didnt put my hands into hot water. So I had a good excuse for pot washing. Ha Ha

    I hope it goes well but if you have a delay dont get down you will have the chemo the following week.

    Regards Barbara. X

  • Thanks for that info Barbara. It's good to hear others experience of this concoction of drugs. I am going to see my GP next week to get some B6 and Vit E as these sound good to take. Also some rubber gloves for the washing up (unless there is a willing volunteer).

    Had a few delays with other chemos and had the injections so I will expect this will happen again.

    Hopefully there will be good shrinkGe and a reduction in the CA125

    All the best for you, Irene xxxx

  • Dear Lovely Irene

    It's good you're going for the chemo straight away to avoid the main theme which is a worry about bowel blockage. Nobody would wish that on anyone.

    I hope the chemo goes well on 7th April. Has anyone else heard that Caelyx kicks in more slowly than other regimes so it might take more time to see a reduction in CA125?

    Irene, go for it and we're all with you. I'll be joining you soon on Caelyx and Carbo-Platin - join the mad club!!!!!!

    Sending love, hugs, strength, and a sense of humour. I think we all need those!!!!

    love xx Annie

  • A sense of humour is what we have Annie. At least we can laugh about it and share thoughts, feelings etc.

    Chatting up a strange man in the coffee shop, telling the waitress we were on our first Internet date and getting free drinks :) :) :)

    How we laughed in the Casino, watching all those "idiots" gambling away their £sd. I think I have led you astray, taking you to a gambling joint, in the middle of the East End. However, you don't need leading Annie, you are a leader in the fight for OC and long may you continue.

    See you Monday for more laughs and fun xxxxxxx

  • Irene you are so funny - and Lou is right you are a very lovely lady too and one who is good to meet up with - even if you do lead others astray!

    I'll never forget that man's face when you told him we'd met on the internet and we were on our first date. I don't think it made it any easier for him that we went on to explain we both had terminal cancer and then laughed so much our sides ached. It should have been filmed for 'Off Their Rockers'.

    We need those moments to remember, along with all the other rich memories, when things are tough and we suddenly feel very alone on this cancer journey.

    Sending love n hugs. xx Annie

  • I don't think we will ever be alone Annie. We have great hubby's, children, grandchildren and close friends. We will not allow ourselves to be alone and will support each other all the way xxxxx

  • Hi Irene , I met you on Wednesday I'm sure - going by your post about being a midwife !! I was the one with the popular wig 😜

    Anyway just wanted to say you are a lovely lady and have a great sense of humour ,

    I wish you all the very best and hope you keep us updated here

    Lots of love and luck


  • Aw thank you very much Lou. I do try to keep a brave face on things.

    Wasn't the lady funny...the one asking all the questions about hair colour, telling us her chemo story and about her scan. etc etc etc. Funny that when you left I had all the questions and story again. Nice couple. They were "friends" bless em.

    Lovely to have met you - may see you again, having my chemo on a Tuesday, so if you are there pop in and say hello.

    Love n hugs Irene xxxx

    PS. Your wig was ace!!!!!

  • Hi again - yes what a character she was - I can imagine her in her new long red hair she will be so happy - I hope they do go and get her one . It's funny that the small things seem so major - perhaps it's a defence mechanism to stop us all going completely bonkers !

    I will certainly come and see you if I'm there on a Tuesday

    Xx lou

  • I'm sure the lady was at some time very beautiful and the loss of her lovely thick red hair has affected her badly. She'll get it back when Chemo over and she can dye it red again.

    Irene xx

  • Morning Irene,

    I'm going to be nosey and follow your post as I'm joining the same train as you a couple of weeks after. Carbo/Caelyx on the 22/07! My oncologist ( well me really) trying to hang on till then as we have a family holiday booked at Easter, booked when we thought id get a longer break from chemo....hey ho!

    Looking at the weather this morning, I am dreaming of sun kissed beaches and warmth on the bones!

    Good luck with your treatment, I've heard said that the tiredness might not be quite as bad as oncologist suggested, so I'm planning on still being at work ( if only part time). I will be applying tonnes of aqueous creams to hands and feet to combat sore skin which apparently is another side effect. If nothing else I will be so soft and smooth at the end of it all, that maybe I could become a hand and foot model!

    Dawn xx

  • That should have read starting chemo on 22/04, wishful thinking not starting till July!

  • Ah yes I thought that date was a typo. Pity it's not July. Not being nosey at all, join in any discussion, at any time.

    I've heard about skin changes so I will get some creams etc. also going to ask for B6 and Vit E, don't want to overdose on vitamins so maybe the doctors can give a lower dose than you can buy over the counter.

    Good luck with yiur treatment, np ust compare notes and suggestions on getting through this.

    Happy Easter, love Irene xxxx

  • I have had 3 pulses of Carbo/Caelyx and apart from tiredness and pain after first one all seems ok. Hopefully the chemo shrinking tumours on first one as not needed pain relief since :) I have not had sore hands and feet or mouth ulcers so far so fingers crossed!! I have my CT Scan on Monday then review on 14th prior to further 3 pulses if effective.

    Wishing you an uneventful course of treatment!

    Love Wendy xxx

  • Oh that's great to hear Wendy. I hope all I get is tired, I can cope with that. What I don't fancy is nausea :(

    Have you taken anything to prevent sore hands and ulcers?

    Good,luck with the scan and the review. Do let us know how the treatments worked for you.

    Love n hugs Irene xxx

  • Hi Wendy.

    How goes things with you?

    Did you get your mud CT scan and results?

    I hope they were positive and showed good signs.

    Please let us know.

    Take care, irene xxxx

  • Saw oncologist on Tuesday and significant shrinkage in Tumours so continuing with next 3 Carbo/Caelyx so very pleased. She mentioned other options if needed for further recurrences. Chemo yesterday so lovely bright red cheeks off and on from the Steroids lol

    Hope you are coping ok with regime! :)

    Love Wendy xxx

  • That's fantastic news positive. Looks like the mix is doing it's job.

    Yes i get lovely rosy cheeks too.

    Let's hope you don't need other options for a long time.

    Take care irene xxx

  • Best Wishes Irene on your journey. Mine starts on Wednesday with Caelyx. I shall be keeping a watch on your posts.

  • Thank you - good luck ŵith the treatment. Let us know how yiu are coping. We will share stories and strategies to get us over this hurdle.

    Take care, Irene xx

  • Hi again Irene, you're a hoot. Poor man, probably didn't know what hit him with you and Annie in top form lol.

    Just want to send a big hug. xO. Ann

  • Oh dear Ann, Annie and I were in top form that day. I pitied anyone that got in our way when we met up. We went to Marks & Spencer for lunch and had a mix of their Indian meals with rice. It was super and we watched the world go by through the window overlooking the Olymoic Park.

    A great afternoon spent doing nothing but laughing and enjoying ourselves.

    Take care Ann, taking your hug and sending one back (((--))) xxxxx

  • Hi Irene,

    I've no good suggestions as I haven't been there yet, but im wishing you well.

    Aemi x

  • Hello Aemi, thanks for your good wishes. I am sure there are lots of ladies with good advice and who have gone through this treatment. I've already had loads of replies. It also seems there are other ladies starting the same chemo soon so it will be good for them to read up on recent techniques.

    Wishing you well. Irene xxxx

  • What a jolly lot , we all seem to be . Regularly at UCH , there seems to be club ; we all greet one another , air kiss , cuddle , comment on how well we all look , trade make up secrets , scarf / wig tips . I have met in the last four years , the most astonishing , wonderful women / couples who I would never have met in my life but for this bonkers disease . It has been an extraordinary bonus , and that includes Oncologists / nurses / caterers and cleaners !

    Caelyx for me , was not good ...hands / feet no problem but, rashes everywhere else so bad , I have had to come off it , and have just started single carboplatin ( last had in 2012 ) yes , back on the platinum when I was so worried that I would not be offered it . Weary , tired , nothing new there , but still here ! Which is a bonus !!!

    Strength ,hugs and smiles to you all .xxx

  • Thanks Angela. Yes, I suppose Caelyx isn't for everyine. Some sail through it and others, like you, have had problems.. Will have to wait and see when I have my first lot how I take to it.

    I know for one thing my bloods will take a hit, they did on both my 2 treatments so I don't suppose this one will be any different.

    I too have met lovely ladies, through HU and at Barts in London, whom I would never have met if it had not been for OC.

    Sharing stories is great and I love reading posts on HU and reading replies. Long may we all continue,

    Take care Angela, love Irene xxxx

  • Caelyx carbo seems to be flavour of the month at the moment. This is being suggested

    for me also as next thing to try . Have had Taxol/carbo...Taxol/carbo.Gem/carbo/ weekly taxol and Avastin.......over the last 5 years.....It will be interesting to see how we all feel on this combination. I think the sore hands and feet is the thing most suffer from so I will get some of the udder cream to try. Best wishes to all..xx

  • Hi Gina, I've had the same combunations as you over the last 2 1/2 years. Avastin worked for a while but the Cancer found it's way around it. Clever sod!!!!

    This is the next one for me and many others. We will share our stories so that others who may be facing this will know what they are up against.

    Take care, Irene

  • No special treatments to save sore hands and feet. I did buy udderley cream as seen it recommended on this blog! Remembering back I did have a rash on my skin and skin very dry but I changed to Dove shower gel and it seemed to settle. Hospital gave me aqueous cream which I used on rash initially but not used anything during second and Third pulse :) hoping the best for you!!!

    Wendy <3

  • Thanks Wendy. To put the tips in one document:

    1. Keep out of sun (chance will be a good thing in this weather).

    2. Vit E and B6

    3. Moisturise skin, hands and feet especially.

    4. Warm not hot baths

    5. Possibility of mouth ulcers , so mouthwash may prevent.

    6. Let others do the work for you (sounds like a good idea :) )

    7. Get plenty of rest and stay positive

    Hope I've captured them all. Any more????

    Happy Sunday everyone, lamb cooking in the oven smelling delicious, just sitting down doing vegetables, waiting for my family to arrive for lunch. Happy days 😄😄😄😄😄😄 xxxxxx

  • I had my first carb/cal 4 weeks ago and for me the difference between it and my last two lines of carb/taxol is that on carb/taxol I would feel under the weather for 2 days, rubbish for the next 2 and then start to get better and better until next sesh was due. With caelyx I felt slight nausea which responded quickly to meds (no real nausea before) and had no discernible 2 day dip but a slow burn of feling off beat, bit like a pre flu feeling. Feel tip top now and would have been up for number 2 but have been given a weeks reprieve to attend an event in London. Back ache went after 48 hours so something's working, constipation normal for me on chemo so usual movicol did the trick, had some mouth ulcers but bit my cheek so not surprising and skin very dry so lots of moisturiser. If it doesn't get worse than this I can manage, working full time at the moment. Bon chance my lovely xxxxx

  • Wow I do admire you.....working whilst on chemo is a fine feat!!!

    Pleased to hear it's not been as bad as you expected. I can handle most things, but nausea is a no no for me.

    Taxol was awful for nausea, so hope fully Caelyx might not be too bad.

    Getting creams etc ready for next Tuesday.

    Happy Easter, Irene xxxxx

  • I am so sorry you are going back on treatment, what I would advise is a break before you start if you can manage it. I havent had that cocktail yet so really cant comment but I wish you the best. You seem to be taking it all in good humour but where would we be without our sense of humour, it is that which gets us through. I have scan next Thurs so could be joining the gravy train, but trying to think positive. I am on Avastin which so far suits me and is doing the trick, long may it continue. But in the end we have no control over when it will come back. Sending you a big hug

  • Just had a nice week in Lanzarote so feel quite rested. I must admit I don't do much anyway but not having to Cook, clean etc was nice.

    I agree, where would we be if we didn't laugh about it, we would cry and that's not a good idea.

    You are right when you say we have no control, but we can have a good go at controlling our emotions and giving it our best shot. That's all we can do.

    Good luck with your scan and long may your Avastin work!!!!

    Love n hugs Irene xxxxx

  • Thanks Irene, you are right, we can only give it our best shot, I am glad you had a break, we all need one now and again, wishing you well

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