Hello lovely people, new to the forum, and wishing you all good health and recovery. Thank you for your helpful posts.
I just wanted to flag up my experience at chemo yesterday in case it is useful for others being switched from Docetaxol to Abraxane. (It may not be true of all hospitals but is worth asking if this happens to you).
I have been Paxman cold capping on Docetaxol (two rounds out of six so far) with fairly good results. (kept 60% ? hair.)
But was switched to Abraxane after having reactions to Docetaxol. At the hospital yesterday for session 3, the nurses told me ‘we don’t cold cap with Abraxane.’ I was very upset, and cross because the oncologist had not mentioned it to me the day before.
I insisted on the cold cap for this session. I saw the head of oncology, who told me it is a question of capacity in the chemo suite - they need more chairs and cooling caps for the high patient demand. Because of the high demand and low capacity, they have a short list of drugs for which patients get the cold cap, so have drawn a line with Abraxane. They will have a meeting about this because many people react to Docetaxol and get switched to Abraxane mid way through treatment.
The doctor apologised when I let her know it was distressing to be offered the cold cap and have it taken away mid way through treatment. She said she didn’t think about the cold cap with change of chemo drug. (But had also said was aware it was an issue for these patients!)
It was astonishing to me that I had spoken to 3 oncologists about the change to Abraxane and none of them mentioned it - just left it up to the poor nurses to break the news on the day of treatment.
I know doctors are focused on keeping you alive but you would think they would have some awareness of how vital hair and hair loss is to patients!
In the end, I asked the ward sister if I could bring in a portable cooling cap during treatment, she said that as long as it doesn’t take longer I could bring in my own. So that’s my next research project!
I realised that this is an international forum - should say that I’m in London, UK and being treated on the NHS!
That’s awful . I had cold cap for 12 treatments FEC 3 and 9 Pavlitaxel . Kept 70 per cent of hair . I was told the reason more women do not use it is because of cost and they only offer if you ask now in your case they are taking it away . I think that is shocking what difference does it make which drug you are having ? I would insist on it again
Hi all
I was diagnosed with HER2 positive ductal breast carcinoma in July. I had a bilateral mastectomy in September and have just learned that I will now be undergoing a weekly 3 month course of Paclitaxel chemotherapy starting next week.
The hospital where I will be having my treatment do not offer the cold cap service. They withdrew this service stating that they do not have the time or resources to offer the service. I was wondering if anybody has any experience of purchasing their own cold cap kit and if so, from where and how effective this was for you.
I had hoped to hire the Penguin Cold Cap system which I’d found online, but this requires sourcing my own dry ice for freezing the caps. Although this is all possible, I have just been informed that my hospital will not allow this due to health and safety reasons of handling the dry ice.
Therefore, I am back to square one and losing hope of accessing a cold cap system.
does anyone have any advice for me please?
Thanks
Hello Margot,
I appreciate this is now an older post & I am very much hoping this is all behind you but I think I am about to face the same obstacle at the same hospital. Please could you share how it was resolved for you or if the hospital revealed a definitive policy?
Many Thanks
I don’t have the answer & do not agree in any way but Abraxane is only a 20 minute infusion which may be why they’re going to say no?
Ì had abraxine, Ì think it depends on the size of the dose of abraxine you are given, how the gloop as Abraxine is like wallpaper paste, behaves going through the drip. Mine could take anywhere between 2 hours to up to 5 when it would not feed through. That said most of the chemo nurses did say it was a far bigger dose than anyone else on the unit. I had severe adverse reactions to all other taxels that was found to be a drug allergy to the drug carrier hence the highest dose of abraxine. I have a history of drug allergies.
I was not allowed to cold cap for medical reasons ( chronic migraine sufferer ) and all my hair as in ALL went poof over night on the second treatment. That really upset me. My hair started to regrow 10 weeks after chemo had been finished.
Sharing in case anyone is prescribed Abraxine due to severe adverse reactions to other taxels and then imagines it only takes 20 minutes to infuse. Your chemo nurse who oversees the amount of abraxine your due to have will be able to give you an idea of how long your dose may take to infuse.
@wibbles understood-thank you for sharing-we all vary so much x