Carbo/caelyx not working: Hello friends, I have... - My Ovacome

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Carbo/caelyx not working

Comedy123 profile image
19 Replies

Hello friends, I have first reoccurence after 6 months. I had 3 treatments of carbo/caelyx. It didn't work. CT showed progression of disease. Its in my leftover omentum. I feel bloated. Oncologist is going to start me onGemcitabine&Avastin I am really worried & getting anxiety.Did anybody have same experience? Please let me know. Thanks

Harp

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Comedy123 profile image
Comedy123
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19 Replies
Lyndy profile image
Lyndy

I haven’t had this experience Harp but I am a great fan of getting a second opinion/ maybe looking at a trial. You have nothing to lose and you might discover another option by going down this route, or you might be reassured that your team have offered the best treatment. Sending you a big hug because this disease is tough mentally as well as physically xx

delia2 profile image
delia2

Hi Harp. I agree with Lyndy. It’s a good time to look at trials— or possibly surgery if it’s only in one location. I know it’s worrying but don’t despair. Sending hugs.

Comedy123 profile image
Comedy123 in reply to delia2

Thanks Lyndy&Delia. My Dr said surgery is not possible at this time. Harp

Tillymint61 profile image
Tillymint61 in reply to Comedy123

Did you ask the reason why not more surgery? No need to share why, but that's where a second opinion may come in useful for yo. If it supports your teams thoughts then you at least have confidence inthem being on the same page. However another oncologist may believe it is an option . Wishing you well with your treatment whatever form it takes. Xxx

Gartenfee profile image
Gartenfee

Good morning Comedy. This ist my first post. I'm writing from Germany. My first diagnosis was in 5/2019. I was inoperabel. Instead I got Carboplatin/Gemcitabine followed by Olaparib. in January 2021 I started again with the same Combination Wirth Avastin. Since June I get Avastin alone. I can manage without severe sideeffects, until yet I even did not loose my hair. Last week CT showed stable disease, although my tumormarker are higher than at the beginning of the new treatment. I Wish you good Luck Cheers and big hugs from Germany

Comedy123 profile image
Comedy123 in reply to Gartenfee

Hi thanks for replying. Did u get vitamin C.through IV during your treatment?Thanks

Gartenfee profile image
Gartenfee in reply to Comedy123

No the only supplements are vitam D once a week and daily Multivitamin intake

fendweller profile image
fendweller

So sorry to hear this , hopefully an B will work for you .I fear I will be in the same place as you , I've just started carbo/caelyx ,4th line , only had one infusion so far but just have a feeling it's not doing it's job , I too am bloated and uncomfortable . Be strong ,there's options out there for you.

Sending love and wishing you well .

Cheryl x

rosebine profile image
rosebine in reply to fendweller

Caelyx apparently doesnt kick in until about 3 infusions so dont dismiss it yet.Best wishes

Tillymint61 profile image
Tillymint61 in reply to fendweller

I went onto 2nd line carbo on it's own and 1st treatment was harsh with all the symptoms I had made much worse. However the next one with a few tweaks to anti sickness and laxatives and going very plain light regular food for 3 -4 days and drinking more than I felt possible with the bloating the 2nd and 3rd treatments it became manageable. It may be different as I haven't been on a combination yet. But I just had a scan showing slight reductions in all areas still 3 more leading up to Christmas so don't despair you will get the results of the effectiveness which I hope you. It spurred me on to getting back a little positivity and making the horrible treatment tolerable. Sending gentle hugs. Xx

Comedy123 profile image
Comedy123 in reply to fendweller

Hi, My oncologist said surgery is not safe at present.

SUE7777 profile image
SUE7777

Hi Harp, I was on carbo/caelyx and i didn't work so I am now on weekly Taxol and hoping to get on prompt trial if it works which it seems to. All the best Sue xx

Gemmyw profile image
Gemmyw

I had weekly taxol plus Avastin after caelyx didn't work for me. The weekly taxol left me, overall, stable. I'm currently on Gemcitabine as a single agent and am just about to finish that. I think it's radio and/or oral chemo (cyclophosphamide) for me next xxxx

Ruebacelle profile image
Ruebacelle

My 3rd and 4th lines didn't work. Avastin worked for me good luck from paris

Comedy123 profile image
Comedy123

Thanks everyone for replying. Wish everybody good luck. I hope new treatment will work for me.

Nus38 profile image
Nus38

Wishing you well Harp. I have no experience of reoccurrence just finished my first line treatment in April 2021. I have my six monthly CT scan tomorrow...feeling anxious. I hope you can change to a better treatment plan that will shrink the disease into remission.

Love Nus x

Sherrym profile image
Sherrym

Caelyx is another option I believe, then if results are good, PARPS.

Much much luck

rosebine profile image
rosebine in reply to Sherrym

OP thinks Caelyx hasnt worked so far

Sherrym profile image
Sherrym in reply to rosebine

I think treatment is tailored to individual & is cumulative.. u cd speak to a specialist in the field -I speak to Professor Jon Lederman at LOC. Good luck

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