Pros and Cons of a Cold Cap

Hi

I am interested to hear of your experiences with using a Cold Cap during chemotherapy, the pros and cons.

How long you wear it while having your chemo session.

Thank you

Parents
  • Might be out with some of the exact times here because it was over 2 years ago my wife went through treatment. The things i remember, it added around an hour onto each appointment, sometimes more.

    You have to take painkillers an hour before because it gives you headaches. It actually gave my wife migraines. She forgot to take painkillers once, so that added around 2 hours onto the appointment.

    She endured it around 4 times during her 7 or 8 doses of chemo. She kept around 40% of her hair, even though she stopped using it. Whilst using it, her hair only thinned slightly. But yeah, the hassle it brought her, she just stopped it. The discomfort was also an issue.

    It's one of those things that is proven to work in some cases. "Works" is a broad term. It was deemed to have worked in my wife's case. Some people keep most of their hair, some a fair amount, some less than half, and in some cases, it doesn't work at all.

  • I must say it is refreshing to have a male’s voice on these forums. Thank you

  • When i first arrived here, i was in a very dark place. I was struggling badly with my wife's diagnosis. Like yourself, this was all new to me. Seriously? There were times i had my wife dead and buried before even hearing what the doctors had to say. I wasn't one of those positive people that you hear about all the time that could say "Everything will be alright" out loud. I couldn't say it out loud because i was struggling to believe it myself, at times. Yeah, what i knew about cancer before all this amounted to no more than the usual cancer = doom.

    It was people on here that got me through that, and coupled with what i was witnessing, i quickly realised cancer wasn't the death sentence it used to be. In fact, my thinking was 30 or so years out of date. You will be terrified, be thinking dark things, but you'll soon realise what you have running through your head isn't the reality. There was one woman in particular on here that helped me massively. If it wasn't for her, I'm not sure how i would have got through my wife's diagnosis. I'll never forget what that person done for me, and it's why i chose to remain on here, so i could repay that woman's kindness. All it took was one person to o[pen my eyes, and I'll always be eternally grateful to her.

    I don't know the ins and out of cancer, but what i do know is what one person can endure during a diagnosis of breast cancer. My wife was stage 3, grade 3 upon her being diagnosed, and it was as bad as things could get before being classed as terminal. It was in her lymphs. She was down for a mastectomy, but because she got a full response to the treatment, it was downgraded to a lumpectomy.

    She got both EC and Docetaxel chemos. The EC kinda worked, but not great. It was the Docetaxel that completely killed the cancer. So even if your mid-point scans are a bit average, never lose hope because it's the full treatment cycle that matters.

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  • When i first arrived here, i was in a very dark place. I was struggling badly with my wife's diagnosis. Like yourself, this was all new to me. Seriously? There were times i had my wife dead and buried before even hearing what the doctors had to say. I wasn't one of those positive people that you hear about all the time that could say "Everything will be alright" out loud. I couldn't say it out loud because i was struggling to believe it myself, at times. Yeah, what i knew about cancer before all this amounted to no more than the usual cancer = doom.

    It was people on here that got me through that, and coupled with what i was witnessing, i quickly realised cancer wasn't the death sentence it used to be. In fact, my thinking was 30 or so years out of date. You will be terrified, be thinking dark things, but you'll soon realise what you have running through your head isn't the reality. There was one woman in particular on here that helped me massively. If it wasn't for her, I'm not sure how i would have got through my wife's diagnosis. I'll never forget what that person done for me, and it's why i chose to remain on here, so i could repay that woman's kindness. All it took was one person to o[pen my eyes, and I'll always be eternally grateful to her.

    I don't know the ins and out of cancer, but what i do know is what one person can endure during a diagnosis of breast cancer. My wife was stage 3, grade 3 upon her being diagnosed, and it was as bad as things could get before being classed as terminal. It was in her lymphs. She was down for a mastectomy, but because she got a full response to the treatment, it was downgraded to a lumpectomy.

    She got both EC and Docetaxel chemos. The EC kinda worked, but not great. It was the Docetaxel that completely killed the cancer. So even if your mid-point scans are a bit average, never lose hope because it's the full treatment cycle that matters.

Children
  • Forgot to say, she's 2 years out from treatment and is still free of cancer.

  • The first thing that ran through my mind is that I am going to die.  I am negative for ER and PR but positive for HER. Told I need 7 chemo sessions every 3 weeks and Phesgo for the last 3 sessions.

    Depending on whether the tumour shrinks I may have a lumpectomy or mastectomy.

    Great to hear your wife is two years free and long may it continue. 

  • It's natural to think worse case scenario. Once you have all the knowns at hand, and you begin treatment, you have something else to focus on, so the negative thoughts begin to disperse.

    My wife was triple +, so she had the HER thing too. Again, it was so long ago, details might be a bit over the place, but I think you get thigh injections for the HER part of it. That is something that has moved on. The injection used to be yet another IV procedure, but now, it's done over 5 mins via an injection into the thigh. In the grand scheme of what you're going through, it's an almost nothing procedure.

    Something i wish people had told us is about the mouth care. Chemo can affect your mouth. It affected my wife badly. Buy yourself a soft bristled toothbrush, even a proper baby one will do. So if you start to get achy gums, use the soft brush. I'd use the soft brush before any problem arose. But do have one in the house. I had to run to Tesco around 11pm on a Friday night for one. Another thing about oral issues. Nip them in the bud straight away because they can stop you eating and drinking. If you struggle with mint toothpaste (it can really nip), get kids toothpaste. Something like strawberry. Kids toothpaste is fine to use as an adult, as it's the same stuff we use anyway.

    Constipation is another biggie. Always, always keep on top of that. Touch base with your care team about it even if it's day 1.

    You'll probably find insomnia becomes an unwanted friend due to your hormones taking a dive, and the steroids. You might not get it, but do expect it, if that makes sense.

    Don't be shy asking questions. I'll happily answer your questions if i can.

  • Thank you so much for the advice. Your wife is very lucky to have you as a caring loving husband and you her. 

  • Hi ProfBaw, I just would like to thank you for sharing your wife's journey. It sounds very similar to my own. I have IDC, two tumours, cells in tissue and one lymph node  I am also triple positive. After finishing EC, scans showed some improvement as tumours have started to shrink. I've had my first docetaxel and phesgo injection into the thigh, from what I know the phesgo will continue for about a year, after chemo finishes. I have been told I will need a mastectomy with full node clearance  It was great to hear how well your wide responded to the docetaxel and had lumpectomy instead of mastectomy. I hope your wife continues to feel well. Xx

  •    Terrific post and I very much hope you continue to pay it forward to encourage others - be they sufferers or carers. Huge congratulations to you and your wife on her recovery after such a traumatic ordeal. Long may your wife’s (now) good health continue.  Kindest regards.

  •    

    Dear ProfBraw, wise words indeed on the mouth issues.  I have a few tips for  too.  I too have problems with a very dry mouth.  This gives rise to lots of mouth ulcers (gums and tongue) which makes it hard to eat and talk with a lisp. So, I too use a soft bristle brush and use a very good mouthwash called Difflam which is good for killing infections and easing pain and discomfort.  I use it after brushing and before eating. Also there’s a good toothpaste called Biotin which is very good too. I also brush using warm water because the cold hurts my teeth.

    And, if you find the corners of your mouth becoming sore or split (very painful) the over the counter Blisteze is very good. Apply anytime but just before bed allows me to wake up with a definite improvement.

    Kindest. 

  • Thank you so much for sharing. I also read that salt and bicarbonate of soda is helpful as a mouth wash. 

  • You have to be careful using salt when you have a dry mouth, which can be common during chemo. Salt dries your mouth further, so it's better to avoid it if you can. However, this may differ between individuals. Outside of dry mouth, salt is a good way to relieve inflammation.

  •  

    Dear Sandradee,

    Here are a few links to the things I’ve tried that really have helped.  

    All available from Boots the Chemist (in store or online).

    Dry Mouth:

    Biotène Toothpaste:

    Biotène Mouthwash

    And these Oralieve products do a similar thing.

    Painful or sore mouth (e.g. mouth ulcers etc):

    Difflam

    Kindest as ever.