English Community

I haven't been here in a while. I think the last time I posted was in 2023. At that time, I was in treatment for a recurrence. My initial diagnosis was April 1st, 2020. I had an allergic reaction to the carboplatin in 2023 during the 8th treatment. I was then switched to cisplatin and paxiltaxol. I finished another 4 rounds, and while the cancer was still there, I was moved onto Lynparza. I took Lynparza for about 17 months but after my ca-125 continued to rise my oncologist put me back on chemo.  She wanted to try me back on the carboplatin as it had worked so well for me previously.  I was anxious about trying it again but was assured that there were new protocols in place that had helped with mild allergic reactions. I agreed to try it, that was a mistake. I had a very bad reaction and was code blue. So now I couldn't have that at all. I was worried and my oncologist assured me there was still lots available to me. So I didn't feel like I had a death sentence. That changed after I got copies of the paperwork for my long term disability.  That's how I learned my cancer couldn't be cured, that's where I learned the chemo I've been on is considered palliative chemo and I was so shocked because my oncologist had not said those words to me. It's been weird ever since. I have not talked to anyone else who has become allergic to carboplatin.  I'm currently on doxorubicin (Caelyx) and just doing my best. 

I was diagnosed in May 2023.  I had carboplatin and paclitaxel and debulk hysterectomy and then started Lynparza in December 2023.   After 7 months my CA125 began to elevate.  In December 2024, I started CarboTaxol with Avastin.  On my CT scan report I saw that I was in palliative treatment for stage 4 Ovarian Cancer.  I knew my disease was serious, life threatening, etc but seeing it on paper was definitely a huge gut punch.  I was never told it in those terms.  However, apparently palliative is a much more commonly use term for anyone with chronic illness.  I've also been told by my gyneoncologist that there are still lots of options.  

I have never had reactions to chemo but currently I'm on Caelyx.  I'm struggling with soreness from skin rashes & mouth cankers but my CA125 is increasing and CT shows some progression.  I meet with the oncologist next week.  

Are you doing well on Caelyx?  I've only heard of one other person using it.  

I am doing alright on it, I think. I did have a couple of rashes that needed to be treated. I had a break from it for 2 months and just started back on it again. I like that it's only every 28 days but it is definitely hard on my body. I haven't had mouth sores but I use Xylimelts for dry mouth so maybe that's why. I'm sorry you found out about palliative chemo in a similar way to me. I am glad to know that I wasn't the only one to find out like that. 

Hi @Tanya Mac and thank you for sharing your story in light of @MadBel post. I'm glad your gyn onc has told you there are till options to pursue. Hopefully you will get clarity on next steps at your meeting next week to discuss your CT scan. Will be thinking of you.

#Treatmentandsideeffects

Hello @MadBel and welcome back to the forum. I know it's likely bittersweet that you are back and engaging with this group however we appreciate your voice and are here to support you. I'm  so sorry for what you have been going through and how information has been 'revealed' to you. I was told by my oncologist following my debulking surgery and chemo that I should consider OC as a 'chronic disease'. She said that it is rare that the words "cured" will be used. I have to admit I almost fainted when she said that and then I guess I took a pause and considered that there are many other 'chronic diseases' out there that people deal with. While I don't like the way it was positioned it at least helped me to wrap my head around it.

I was told at the end of my 6th infusion two years ago, that if I have carboplatin again, they will be on 'high alert' as reactions typically happen after the 6th infusion. They also told me that BRCA positive folks tend to react faster than non-BRCA folks. Who knew. When you last had the carboplatin, did they do the "de-sensitization protocols" e.g., slower infusion and pre-meds (steroids and anti-histamines)? I'm guessing they did but just curious. I can only imagine code bluing was horrifying.

Have you spoken to your oncologist since you saw the paperwork said it wasn't 'curable' and that they were using the terms "palliative care"? I know you said it's been "weird" but I wasn't quite sure what that meant. There are other chemotherapy drugs out there. Your medical team would be the ones that would speak to those based on your personal situation. As well, have they discussed participation in any clinical trials? Those have been options for other Teal Sisters in this forum. I'm also curious as to what basis they've made their statements. What does your bloodwork say? What about CT or other scans? I'd go back and push to find out what the next steps are and perhaps discuss better communication protocols from their end. 

The term "palliative" is also a scary one and it's a shame they added it as a label without clarity. For someone with a serious illness it can mean so many things. It's about receiving specialized care focused on improving quality of life including symptom management, pain and stress all done alongside curative treatments. It can be discussed at any stage of a disease. I would definitely go back and speak to your oncologist to get clarity on why that term was used.

I hope you will get some answers. I do appreciate you sharing your story and I hope, like @Tanya Mac that others Teal Sisters will be able to weigh in with some counsel and advise.

#Treatmentandsideeffects

-------------------------------------------