Third recurrence, very worried.

[Seedlings]

I've just started Caelyx ,after my CA125 went up , always a good predictor for me. CT showed a 3cm tumour pressing on my ureter so I needed a stent to release pressure on my kidney. I had ablation on a liver tumour in August this year in the hope that I might get a break!. A CT in Sept showed me to be ned. CT in Nov showed ablation hadn't worked and new tumour in pelvis. That all happened in a week. I started Caelyx last Thursday, so sick for the last five days , beginning to pick up now .

I'm wondering have many of you had Caelyx at this stage of the disease and if you have, had you a good response, remission??.

I was first diagnosed in July 2018.

[Lyndy]

Hi Seedlings

I have just had carbo/Caelyx cycle 3 of 6. I just wanted to say that cycle 1 I felt awful but the last two haven’t been too bad, so hopefully you will find the same.

I have also heard that it can work for some but not for others. I don’t know if that’s a problem with Caelyx or if it’s more that those taking it may be later in their treatment journey.

I am having a scan after cycle 4 so hopefully I will find out then. Best wishes, I hope you continue to improve xx

[Seedlings in reply to Lyndy]

Thanks Lyndy.How many recurrences have you had?? My oncologist didn't suggest carbol to me. He's optimistic about the outcome. I suppose I have to trust his judgement. He has been brilliant in my opinion so far.

I really hope that your CT shows a great response. Good luck with the rest of your treatment.

Tks again

Ann 🤗

[Caleda4]

Hi Seedlings,Sorry to read that you are back in this position again. I had six rounds of carbo/caelyx last year,for 2nd recurrence. I didn't find it to bad,apart from feeling tired towards the end of treatment. My CA125 has risen this Sept. from 169 to 354. I am due a scan 11Dec. It looks as though I will be heading for more treatment in 2024.

I hope that your next round of caelyx will be easier for you.x

[Seedlings]

Tks Caleda 4I'm a week now and on the up. As you say hopefully the next round will be a bit less traumatic. Did you get headaches from it. I have and I really never get them?.

[Pumpkininja]

Hello Seedlings , hope it gets better for you and above all it works.Before you start the Caelyx did you had symptoms? I think nausea might be normal in the days after.they cannot prescribe you anything ?

I'm starting caelyx on the 18/12 & very scared to be honest.

Was told by the doctors caelyx as single agent( given alone without carbo for example)is very well tolerated, that in some very few cases patients just get some allergic reaction from infusion, feet/ hands skin issues that could be resolved by decreasing those and treatment.to avoid tight close, and better choose cotton clothes...went to 3 doctors all told the same.However, from what I've read here it doesn't seem so easy.

Best wishes and sending you good vibes.***

[Seedlings in reply to Pumpkininja]

Hi Pumpkininja,Tks for your reply. I am due second dose on the 22ndDec.

I'm hoping that it shrinks the tumors. I think more anti sickness meds is advised too.

I've been told the same as you re tolerance. Hopefully it will be effective for us.

Hugs

Ann 🤗

[Pumpkininja in reply to Seedlings]

Hello Seedlings are you doing better from the side effects?Praying for you🙏🏼🌸I called my hospital told them before the treatment want prescriptions for eventual side effects: nausea, mouth ulcers, skin rashes, hand/ foot skin issues, etc...

Read here in the forum that some ladies use Aveeno that is a brand I didn't know...anyway ordered some products of Aveeno and cotton clothes, specially underwear.

The side effects according to what i understood can be really different from person to person.

Unfortunately we cannot control side effects or the outcome that is indeed the most important.

Try to visualise yourself well and feeling great.Sending you Positive vibes and warm regards 🤗🍀🌻🌸🙏🏼

[Seedlings in reply to Pumpkininja]

Thanks for your lovely message.I'm in hospital with a bowel blockage!. Have been very ill but am turning the corner now, I hope,🙏. It had nothing to do with Caelyx, just more bad luck.

I hope I'll get home on Monday.

I hope you're treatment goes well and you tolerate it too.

Warm wishes.

Ann ,, 🤗

[Pumpkininja in reply to Seedlings]

Oh dear hope you get better soon🙏🏼Thank you so much.Good recovery and warm regards🙏🏼🌸🍀🤗

[Inguc_is]

my mom was is very bad in doxil(cealyx) after first she has low stomach obstruction and surgery, very bad sours, skin was very bad on all body, october DVT, low hemoglobin… she cant normal go out no power and it didnt work…

[Seedlings in reply to Inguc_is]

I'm sorry to hear that. Inguc_is . For me at the moment it's one day at a time. I can only pray I get through this awful time and that the chemo when I get it works. Warm wishes to your mom.

Ann

[Pumpkininja]

Hello Seedlings doing a bite better?Crossing fingers you can do your second round of caelyx on 22/12( my first one is 18/12).

Did some research and:

Intermittent fasting might help before and after chemotherapy.48 hours before and 24 hours after, normally doctors don't agree but it helps with the nausea: I did it even longer last year with carbo/ taxol/ avastin and had much less nausea then my first time in 2016:didn't vomited one single time.Had nausea but didn't vomited.

Also to choose very carefully what to eat and not to eat, to help also with the mouth ulcers, etc.

Above all believe it will work!

Praying for you and sending you good vibes 🙏🏼🌸🍀✨️

Warm regards ***

[OvacomeSupport Partner My Ovacome Team]

Good afternoon everyone

A specialist oncology dietitian and member of Ovacome's expert advisory panel has provided guidance in response to queries relating to fasting and chemotherapy in the past. As this topic is explored on this thread, I hope this may be of interest. They have explained:

'It is an interesting area and yes there is some emerging evidence in this area, but as usual is not clear cut.

The rationale behind this is that if you place your body in a stress like condition such as when it is fasting (short-term fasting), it is proposed that this will increase the effectiveness of chemotherapy and reduce its treatment side effects. There are some short-term human studies which have found some potential benefits (there is a lot more research in lab and animals that have found benefits in treatment response and toxicity). This however hasn't yet been replicated in longer term studies. There was also only small patient numbers included in these studies. There are many potential concerns and risk associate with fasting, especially if someone is struggling with their oral intake or had any weight loss.

It is still unknown which type of cancers and at what stage and for how long fasting may be a feasible option.

So with this in mind at present we would not recommend fasting and chemotherapy.

Please see attached quick bit of information from the BDA (British Dietetic Association).'

For personalised advice about diet and nutrition during chemotherapy treatment, please do speak to a member of your clinical team about a referral to a specialist oncology dietitian. If anyone has any questions or if there's anything further we may be able to support with, please don't hesitate to get in touch. You can direct message us here on the forum, email [e-mail] or call our freephone support line on 0800 008 7054. We're here Monday - Friday, 10am - 5pm.

Best wishes

Annie - Ovacome Support

Fasting - British Dietetic Association information

[Pumpkininja in reply to OvacomeSupport]

Thank you so much.Indeed, it really depends person to person, etc.I consult a nutricionist before doing the fasting last year.Was following a special diet etc.

Now for example now i lost weight with covid and is not recommended at all fasting.

Need to gain some weight and has been tricky.

Best wishes 🌸