AVB-S6-500 trial

[organicinna]

Hello everyone. I' ve just been offred this new trial AVB-S6-500 together with weekly Taxol, after second line chemo. Just collecting any information if anyone on it or been offered this. Am upset to loose hair again and interested if cold cap actually helps to keep some )))

Thank ladys xxx ()

[ZenaJ]

I used the cold cap and it worked for me. It didn't help my eyelashes or eyebrows of course but I was grateful that I kept most of my hair. It works best if your hair isn't too thick. xx

[organicinna in reply to ZenaJ]

Thank you Zena )) have you used it with Taxol? Sorry for asking is Zena is russian name? )) xx

[ZenaJ in reply to organicinna]

Hi, if Taxol is Paclitaxel, then yes I did and it was very successful. It's not easy and a lot of people can't take the pain but if you can get through the first few minutes, other than feeling cold, it's not too bad. I'm not sure where my name comes from but I think it may be Iran, although my father was Polish. It can be spelt Xena too. Are you Russian? xx

[organicinna in reply to ZenaJ]

Am Russian yes. Well half Russian half Ukrainian .And we have Zena name in Russia thats why I ask you ))

[ZenaJ in reply to organicinna]

Maybe it's a Russian name. I've often wondered. I was supposed to be going to Russia before COVID put paid to that. It's a place I was always interested in.

Hope you are feeling well. xx

[Flute_7]

Hello Organnicinna, sorry to hear your cancer has returned. I have just started the AVB-S6-500 trial too. I have completed my first 3 weeks and currently on the standard week off. I opted for the cold cap and so far so good, although it is early days. When I was first diagnosed in 2020 I was given Carboplatin with Paclitaxel and lost all my hair (cold cap wasn’t offered) so based on info given to me I am hoping this time I will keep my hair. 🤞🏼🤞🏼 I have found the first 15/20 minutes are extremely cold on your head but then you adjust and it’s perfectly manageable. Some people have suggested taking paracetamol before hand but so far I haven’t found the need to. Hope the above helps. Very best of luck with the trial. Xx

[organicinna in reply to Flute_7]

Hi Flute. My medical story is very similar to yours and had first carboplatin/plaxitel May 21. I was offered cold cup but refused it myself . I didn't wanted to spend 2 extra hr in that chair. )) Lost all hair. Now ofcourse desperate to keep that new hair despite the prospect of cold cap every week for how long ? )) Also am worried that my head is sensitive to cold and am always wearing warm hat from October to April )) But I will try. All the best to us my deara xx

[Terra1]

I also used the cold cap and it worked for me too. As this is by no means guaranteed & although for other reasons, I often wondered if because I had weekly Taxol (plus carboplatin every 3rd weeks), rather than a larger dose of Taxol every 3 weeks too, contributed to this successful outcome.

I see your Taxol is weekly too, so maybe this increases the probability it’ll work for you too?

Hope so 🤞.

Wet hair, mild shampoo, tight cap without air gaps to “warm up”, are other factors to keep in mind.

I would suggest taking lots of warm clothes, avoiding a chair near an air-conditioning fan plus snacks to stay warm & comfortable – I took a scarf & gilet as well as using the blankets provided. If you’re about to chuck out a warm top maybe you could cut a hole in it for the IV instead? And maybe that would help too?

Good Luck & do keep in touch and let us know your progress, 🤗 🤗

[organicinna in reply to Terra1]

Ooh thank you Terra. Lots of useful tips )) I wander now why when I had my first line of carbo platin in 2021 every 3 weeks, why can not they give smaller doses every week for first liners? to go gently?? Thanx again . Ofcourse I will let you know about progress and will follow yours ))

[Haeh]

Hi! I used the cold cap and was really glad I did,. My hair did thin a bit, but not enough to worry about. The first 15/20 minutes are the worse then you get used to it. I even took naps while wearing it, so it couldn't have been that bad! Make sure the cap is on tightly. Best wishes

[organicinna in reply to Haeh]

Thank you much x

[Annie2021]

cold cap does help and the pain is definitely bearable and only lasts for the first 5-10 minutes whilst your head adjusts to the cold. Nothing to worry about it, it wont freeze your brain although sometimes with all the worry about OC it wouldnt be a bad thing from time to time 😂 i lost some hair with the cold cap but it actually started growing back whilst still being treated. It thinned out but i had no baldness. Annie 🥰

[organicinna in reply to Annie2021]

Thank you Anni . I had my haircut yesterday to short pixy style it was over gown since Summer cut .I was thinking that shorter hair might help the hair hold on better with this cap. He done it to short and I was even crying at home later feeling stupid and ugly. But am sure its just nerves and panic and all that OC ...)))