Healing Cancer Summit link

[kat98116]

Hi Everyone,

A friend forwarded this to me and I thought it was an exceptional group of speakers. You can listen for free. I've already listened to some of the previews. Take what you like and leave the rest! Kathy in Seattle

healingcancersummit.com/wel...

[Nancy222]

Thanks! I've signed up.

[Lindaura]

Dear Kathy,

I am writing about your treatment plan to find out how you are doing.

I am in a similar situation, with a rising CA125 five months after front line and after dreading this recurrence so soon, today, I was reassured by my Onc that the CT scan showed only peritoneal involvement. All remaining organs clear! But Chemo is being ordered.

I am BRCA1 positive and thought I would be put on the same regimen as first line, Carbo/Taxol, but here in the UK, early recurrence requires Carbo/Carlyx, like you are having.

I seem to have only heard horror stories about the side effects, and like you, I was so sick last time, I was hoping, because I am so well now, that I would breeze through Carbo/Taxol. I did not expect the Caelyx (Doxil) regime.

So, I am not to begin for about 2 weeks, so in the meantime, me and my little family will be preparing the house for me, to deal more easily with bad side effects.

How are you doing now?

Any advice will be much appreciated.

Thanks in advance and wishing you the best of luck with this fight,

Laura

[Nancy222 in reply to Lindaura]

Hi Linda,

I'm on Caelyx, going for my 4th infusion on Friday. Fatigue is the side effect that's hit me hard. I didn't bounce back on the 3rd infusion like I did for the other two. The drug is accumulative. Last week I got mouth sores (will be getting a prescription for Magic Mouthwash on Wednesday). I did okay with baking soda and water, and then salt water. I listened to the oncologist who said to moisturize my hands and feet, and I did from the very beginning. But, I missed a couple of sessions with the moisturizer and got hand foot syndrome which lasted for about a week. I think the problem also started when I used my support hose and perhaps they were too tight for my feet.

My appetite is gone, but it might be from the liver mets, not the Caelyx. Also, I'm sleeping a lot. Delicious three hour naps.

In many ways, Caelyx has been kinder than carbo/taxol. No neuropathy or bone pain.

Hope this helps.

XXOO

[Lindaura in reply to Nancy222]

Thank you so much for letting me know how you are managing with Carlyx.

What a bummer that your liver has been compromised. Any help with that?

Livers are an organ that can heal and regrow. Can they operate on it?

Do they give you a special moistureiser or will any kind do?

Thanks again and I wish you well.

Kind Rey,

Laura

[kat98116 in reply to Lindaura]

Hi Laura,

I'm actually having Caelyx (Doxil) plus Avastin. Since I recurred about 4 months from frontline I'm considered platinum resistant so no carbo. After 3 rounds I had a scan on Friday and it's no better but no worse. CA 125 remains quite high. My current oncologist wants to stay the course, but I'm getting 2 other opinions in the next week. Like you, it's in the peritoneum and thankfully no other organ involvement. I had a tough time with Caelyx first round, so they reduced my dose by 20%. After that all the side effects were quite manageable. The mouth sores were the worst. Be sure to rinse often with a salt/baking soda rinse and be fastidious about brushing/rinsing after EVERY thing you put in your mouth. To help avoid the hand/foot thing keep moisturizing especially between the fingers. I had it but very mild. Since you're BRCA positive you may have more options than me. Nancy is right, though, the drug is cumulative so don't think you're off the hook if you have good months. Best to you!

[Lindaura in reply to kat98116]

Oh dear,

I am so sorry that your cancer recurred so soon and that treatment options are fewer, but getting second opinions seems a smart thing to do.

Someone here recently posted a brilliant lecture from a gorgeous doctor at Stanford University. The post was titled: For Your Viewing Pleasure.

They seem to have a very open and busy research facility there.

Can you get yourself to Stanford?

I can’t find it now, but will post it when I do.

Thanks for all the info and I wish you the best of luck.

Kind regards,

Laura