wonder what's next

well after 3 weeks of in and out of hospital with eating and drinking problems (not alcohol). I am now home, I didn't have my chemo which was planned for the 11th Sept, as not well enough!, I see oncologist on Tuesday to find out weather he is going to change my caelyx as apparently that was the cause of my problems!! What next, I have no idea. after just 2 sessions of caelyx my ca125 went from 1375 to over 2000, not good!.also had to cancel planned trip to UK to see my new grandsons, one will be 3 months now, and the twins 6 months. Hopefully I will manage to get over in October before the twins go back to Jorden. Fingers crossed I will have an easier time next time!! Hope all you ladies are doing ok. on your journey's through this minefield of treatments, xxxx Jeanette

Keep

[Katmal-UK]

Hope they get something sorted for you Jeanette so you are able to see your grandsons xx

[Hidden in reply to Katmal-UK]

thanks. me too xx

[Caroles1]

Good luck to you Jeanette,sure something will be sorted,I know how you love those grandkids,

Carole xx

[Hidden in reply to Caroles1]

thanks, xx

[Cropcrop]

Hope you get something sorted Jeanette and start to feel a little better. take care ❤️Xx Jane

[Hidden in reply to Cropcrop]

thanks Jane, couldn't go through that again. xx

[lorraine71-Australia]

Hi Jeanette, It is in deed a minefield when it comes to the different treatments and that it can be so different for each of us, I hope yours it sorted out soon and that you do get to see you grandchildren..take care Lorrainexx

[Hidden in reply to lorraine71-Australia]

Thanks Lorraine. xx

[GoldenGourd]

I'm sorry to hear about what's been going on with you. Have you looked into trials you can take part in? I often have a " browse" in the cancer research site. I hope they come up with a working alternative soon. Take sere.

X Netti

[Hidden in reply to GoldenGourd]

Thanks Netti, getting on a trial might be tricky, as I live in Spain xx

[Hectoria in reply to GoldenGourd]

Hi,

There is a site that shows trials all over the world including Spain. There was one for HIPEC, heated intravenous-peritoneal chemo which was on a few months ago. The doc in charge sent me a few emails, but stopped corresponding when he discovered I was uk-based.

S x

[Hidden]

Sorry to hear that hope they get you back on track soon good luck xx

[Lily-Anne]

Are you platinum sensitive?

I'm in a similar boat regarding CA levels but what does your CT scan say? I have no idea why my level spiked

Good luck

LA xx

[Chezp]

I am so pleased to hear you are home and I do hope a good plan comes together quickly so you can cuddle those treasures

I also had a wonky chemo journey and always remember being told "the plan can change", cor, can't it!!!

Fingers crossed for you my lovely

🌻🌻

[Mrs_Atko]

Thinking of you Jeanette and hoping you get to see the babies soon xx

[caf132]

Hope you find a solution and get back on a treatment plan so you can see your grand babies. So sorry you were in the hospital.

Hugs, Carol

[Caleda4]

Hello, Great news that you are out of hospital, after the problems you have had. I hope things work out for you to come to the UK to see your grandson's. xxx

[chrissapam]

Hi am sorry but glad you are out of hospital....there will probably be other things....is your nurse helpful? My parp inhibitor appears to e giving me real blood problems...will see what happens next... love Chris x

[HogwartsDK]

I really hope you feel better soon Jeanette!

Dx

[Janet235]

Well, the great 'red' hope of caelyx was presented but didn't work for me either. after 2 lots ( second line treatment, platinum sensitive), felt much worse and ca125 shooting up. Now back on weekly taxol feels like that is having some effect... hope I can take all 18 sessions. Thankfully no eating problems... was advised to go on low residue ( white rubbish diet ) due to narrowed small bowel, but after 3 weeks was hating it and now introducing more healthy food along with daily sodium docusate, without too many issues.. ( apart from back 'wind' 🌪)

Hope you begin to get sorted.... and get on that plane... my grandkids live in Vancouver, but at mo find climbing stairs a challenge and couldn't possibly go anywhere ...

Janet x🌈

[JanePW1965]

Hello Jeanette. Mum had Caelyx when she recurred. After the third dose her hands cracked really badly and she was sore in other places too - under her arms and her feet. The dose was reduced by 20% and things improved. I seem to remember that her CA125 didn't budge much until it had finished then it went from over 350 to 150 and stayed put but she had around 18 months of stability which was great. Unfortunately, the cancer woke up again and she's just had 6 Carbo & Taxol. They had to omit the Taxol from the last dose as Mum's right foot has gone numb and they think Taxol may have been the culprit. She had a CT scan and her CA125 is down to 10 and tumours have shrunk. The thing is, she had the Carbo/Taxol the first time round and recurred within 6 months so I'm on the edge of my seat. It would be great to have another period of stability.

What kind of problems are you having with the Caelyx?

Hoping you manage to get to see your grandchildren. So frustrating for you.

Sending hugs. Jane X

[LittleSan]

Hi Jeanette, sending you live and get well wishes and inspiration to your Onc Team to come up with something successful for you. Sandra x

[Katsmum]

Hi Jeanette

Glad you are on the up and up again and hope you get to see your babies soon. It is odd how differently we all react to the same drugs, maybe they give different doses? Who knows'! I am awaiting 5th caelyx which has been delayed as blood count has taken a hammering but there are other drugs out there so let's hope they find one that suits you better. Take care and all the best

Jane x