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Feeling pretty good but also looking for some hope. I am stage 4 hgsoc diagnosed july 2024, brca negative, hrd positive, platinum resistant, mets to spine that have been irradiated and seem to be stable, about to have my 4th, 5th, 6th round of caelyx (liposomal doxyrubicin). Before finding I was platinum resistant, I had three rounds carboplatin and paclitaxel, radical hysterectomy, then 1 round carbo/paclitaxel - had reaction to carbo and two rlunds cisplatin/ paclitaxel. Just wondering if any other stage 4 platinum resistant ladies out there and how you are doing? 

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I was diagnosed stage IIIC Oct 1, 2024. I did 4 rounds of carbo/taxol, then debulking surgery, then 2 more rounds. I was NED in May, but my Aug scan showed early recurrence and I'm now platinum resistant. Since Aug 27 I've been on weekly Paclitaxel with bi-weekly Bevacizumab, so far so good, my CA125 dropped from 1090 to 268. I'm BRCA1-2 neg, HRD neg, FRA neg.

Sending you strength and hope as you continue with Caelyx. 

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@jojo24 thank you for sharing your story and reaching out to the Teal sisters. I am not sure if this is your first post however it is, welcome to OVD. The ladies in this forum are a wealth of information plus if you search topics in the search bar above right, you can find information on past discussions. I used that a lot when I first joined as for instance, I had no idea what peripheral neuropathy was and learned so much from this group.

I just did a google search on Caelyx as I was not familiar with that drug. It's part of the reason why my 'alias' is as it is as I find I am always learning from this group.

I'm sending you lots of positive vibes through the airways. I hope your upcoming infusions go well. 🤞

Also @Cole I hope you continue to do well with your treatments and that CA125 is continuing on the downward trend.

#Treatmentandsideeffects #Supportandencouragement

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@Cole Have you had a chance to discuss whether you qualify for Elahere treatment? Discuss participation in clinical trials?

I don't qualify for the Elahare, my tumour was Fra negative. We have a teams meeting with Princess Margaret Oct 7th to discuss Clinical Trials once I'm done the weekly Paclitaxel and bi weekly Avastin

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@Cole good that they checked. I cross my fingers that you have a good meeting with PMH.

Thank you 😊 

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@Cole I hope the team meeting at PMH yields a forward plan. Also hope you are doing well with your Pac and Avastin. Please keep us posted. Sending lots of positive vibes your way. 

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Thank you!! I'm doing good on treatment. Yesterday was my 6th weekly Paclitaxel and Sept 24th was my 3rd bi weekly Bevacizumab. Very mild neuropathy and mild fatigue 🤞 

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Hey @jojo24! I am so in admiration of the handle you have on your OC. When I went through this, there was so little known and I have no idea what they did, I just followed their directions. It was a scary time 33 years ago. Just read up on Caelyx and boy this sounds like a big gun! So glad you are feeling well and not having side effects from this! So much is being learned about OC treatment. I feel like they are getting closer each day to finding something that works for everyone. 

Stay strong and don't let this terrible disease take up residence in your brain. Fight with all your might girl!

Hugs,

Monica

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@Monica 33 years, that's amazing!

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Hi @Monica, thanks so much for your note! 33 years ago - amazing! It would have been a different world. I sure hope all is well with you now. ❤️

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@Monica ... 33 years!!! This provides so much hope for us all. 🙌🩵

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