Are you being offered cold cap with weakly Taxol treatment?

Androniki
Androniki Member Posts: 8
edited March 2015 in Chemotherapy - Before, During, and After

Hi, I am undergoing weekly Taxol (Placlitaxel) treatment and my Hospital does not offer a cold cap with this treatment altough they do offer it with 3 weekly Docetaxel. I am really upset because I had the cold cap with 3 weekly EC and it worked really well. So I am heartbroken that I will have to discontinue using it. Their intitial justification is that there is no evidence that the cold cap is effective with weekly Taxol. Do other Hospitals offer the cold cap with weekly Taxol? Does anyone have had positive experiences with it?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2014

    No info on whether taxol and cold caps work, but you are very lucky that your hospital,offers them at all. Most do not and if patients want cold caps, they have to pay themselves and bring their own helpers. Could it be that your facility has limited reserves of the cold caps?

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  • Androniki
    Androniki Member Posts: 8
    edited December 2014

    Thank you exbrnxgrl. I am not sure that it is justified not to offer them. They are using the same chemotherapy drugs that they did 30 years ago. Most of the progress has been in managing the side effects. Should not cold caps be offered as routine?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2014

    I am out of my element since I have never had chemo nor used cold caps. They are still in trials at some places in the US, so are not considered standard of care

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited December 2014

    I'm in New Zealand where Cancer treatment is free so Cold Caps aren't offered at all at the infusion center. You can rent them but for $600 a month. I've been on weekly taxol for over a year now. I did lose my hair initially but it's been growing back quite nicely even though I'm still on treatment.

    I think there is a thread about cold cap use where I'm sure you can get some answers to your questions.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2014

    I think it's actually a cooling device that is in trials, rather than the cold caps themselves. The logic is that since the device is labelled a medical device, the FDA has to approve it for use (which may also result in insurers covering it).

    In regards to the OP's question, I think I would push VERY hard for the cool caps to be made available during her Taxol treatment. Take it to the director of the unit or beyond, if needed. Women suffer enough with chemo that to needlessly deprive them of a hope of retaining their hair smacks of an amazing cold-heartedness to me.

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  • Androniki
    Androniki Member Posts: 8
    edited December 2014

    Thank you Hopeful82014. I totally agree!


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2014

    I know that Dignicaps were being trialed at UC San Francisco. They are a Swedish brand but similar to Penguin cold caps. I hope you prevail in your quest to use them

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  • Morwenna
    Morwenna Member Posts: 1,063
    edited December 2014

    My hair actually started growing back on weekly taxol, having lost it with four cycles of A/C.

    Bummer was, my eyebrows and lashes fell out on taxol ..... That was worse for me than my hair.

    I don't suppose cold caps do anything for that anyhow!

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  • jc254
    jc254 Member Posts: 439
    edited December 2014


    Androniki, not sure where you live because in the US cold caps are not routinely offered at any treatment centers.  Women are on their own to rent/buy the caps and bring them and dry ice to the facilities for each treatment (although some centers have biomedical freezers, avoiding the need for dry ice). There is an active cold cap thread here and women who received weekly taxol have done very well with cold caps. 

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  • Androniki
    Androniki Member Posts: 8
    edited December 2014

    Hello, and thank you all for your replies. I live in the UK and I was treated in one of the major Hospitals in the NorthWest (which I will be glad to name and shame at this point). Treament in the UK is free (thank god; paid by our taxes through the National Health Service) and cold caps are normally offered BUT not for weekly Taxol treatment. They say they have a capacity issue. The irony is that for the whole time that I was treated, trying to balance a home made frozen-pea cold cap, they were 3 unused Cold cap machines, starring at me from across the room the WHOLE time I was there.. How cruel is that?

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  • Androniki
    Androniki Member Posts: 8
    edited December 2014

    jc254, if I could only find that active cold cap thread... Thanks for letting me know.. I will keep looking

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  • Androniki
    Androniki Member Posts: 8
    edited March 2015

    An update: I managed to convince the Hospital to offer me the cold cap throughout the weekly taxol treatment. All in all, I did 3 rounds of 3 weekly EC and 9 rounds of weekly taxol. I used the cold cap for the entire treatment. Yes, it was uncomfortable but it worked really well. My hair has thinned but I still have most of it. One week after the end of treatment, I was able to visit the hairdresser for a gentle blow-dry. So I do reccomend it, if it is available to you.

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    That's great, Androniki. What country are you in, if you don't mind saying.

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