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 and Herceptin 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 Iād 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.
Hello @hanhar82 Thatās a real shame your unit arenāt offering that and I donāt have the impression thatās the norm. I cold capped very successfully using the paxman system available on my unit. Many ladies on here have done the same. Itās not for everyone and I know others who tried but it didnāt protect their hair or they had too many side effects like headaches from the cold cap. Im also sorry to hear of your diagnosis and that youāve found yourself here. I think my advice would be to research it as well as you can to decide as best you can if you think it will will be manageable for you. If you can find a system you can take in yourself without them having health and safety jitters then check how long you can have in the chemo chair because you need to start cooling before your chemo starts and continue after itās finished, your system will tell you how long you need. Might be worth having a chat to one of the bcn nurses on here for ideas on how to approach this. It is consuming your energy trying to sort it and that seems very unfair on you.
I suppose, depending on where you live, is there any possibility of getting your chemo on another unit that can offer support to cold cap? I did actually swap units for my chemo, it was for access reasons not cold capping. It caused very little delay but I had to push for it.
If you have the energy it might be worth contacting the PALS team at your hospital, thatās the patient liaison team that deals with issues where things are unsatisfactory (it will be on their website) Withdrawing something that clearly successfully mitigates hair loss for many seems like a really insensitive and unsupporting policy that at the very least should have a much higher profile. I can see that if the unit are struggling to fit everyone in that needs chemo they will look at everything that consumes time but I feel a bit of imagination could be applied here. Hopefully you may get more responses from others who have used a different cold cap system. Very best wishes.
Iām so sorry youāve found yourself in this situation. In my unit they had two cold capping systems available. Both were purchased through patient fundraising. Initially, I was told by my consultant not to bother with cold capping as it rarely works but I wanted to try it as Iād heard that it can help your hair grow back quicker and prevent alopecia. Iāve now finished chemotherapy and whilst Iāve had hair thinning Iāve kept most of my hair and Iāve heard lots of others have had similar success. I suspect I was told not to bother with it because the unit didnāt want me to spend extra time in the chair.
Can you transfer to a different unit that offers it perhaps? I really hope you can find a solution. X
@hanhar82 have you tried contacting Paxman directly to see if there is any possibility of arranging the cold capping on your own? Theyāre really responsive & helpful when it comes to helping patients to access their system. Itās a load of rubbish that they donāt offer it at your hospital because it should be standard at all hospitals. Maybe thereās also the possibility to transfer your care to a different unit if thereās another one locally. What hospital are you at?
Also, might be worth contacting Jo (https://www.instagram.com/tit_less_wonder?igsh=MXgwbzVrc2cwcm5w) as she might be able to suggest a way for you to access cold capping. She got pCIA as a result of not being able to cold cap (and having docetaxel) and is a huge advocate for women being offered the choice.
Welcome to @vicstar85 and also to @hanhar82, I want to virtually hug you both.
Vicky, I canāt say I would be happy with that delay and no communication with my oncologist since June. I understand that you need the abscess to heal but somebody on your team needs to give you some reassurance in the meantime. Definitely call our BCN nurses on this one - 0808 800 6000 - who can give medical advice. Do you have any nurses on your breast cancer care team that you can call? Your oncoās secretary canāt give you medical info so I would say try to contact one of the people who can. Not fair to leave you hanging.
@hanhar82 I can honestly say that in almost 2 years on this forum, this is the first time I have come across someone being told they cannot cold cap. This also seems mighty unfair. The mental battle is as tough as the physical one and losing all your hair IS a big deal to many of us. Itās tied up with identity and not wanting to look like a cancer victim. All power to all the people who decide that cold capping is not for them but I do believe you should be given that option. Take a look at the Paxman locations for the UK and see if there are any places near you - Locations - Paxman
If you really cannot get scalp cooling then I want to give you a bit of hope. I stuck it out all the way through and lost so much hair anyway that I had to shave it all off. I looked way better with a shaved head than I did with my Gollum/Old Git look and found it really liberating. I came to the conclusion that itās only hair and that it didnāt matter. However, that is not how I felt when I was about to start chemo so I fully empathise with your concerns. Brilliant suggestions from @carrie5 and @cass2
@rrey A massive well done for refusing to give in to worry - weāve been there, done that and got the T-shirt. However, nobody would underestimate what a battle it is to keep it at bay. You are bang on that swollen lymph nodes in the neck can be due to the flu vaccine or a virus so focussing on facts and not letting ācould beāsā take you down that rabbit hole is an excellent strategy. Do keep us posted. I hope the time passes quickly. Every little sign or symptom is a worry for us now. New York was amazing thanks, and all the sweeter for being my end of treatment present to myself.
@sshini93 Your mum is on a very familiar treatment path. This is all good and she is slowly but steadily ticking it all off. Love and strength to her.
@kartoffel I was already jealous of your hair and now even more so! Iām still so relieved that your news was good. Even my husband was and heās never even met you! Great suggestion that Carrie goes to a spa. However, sheāll probably opt to jump off a cliff with only a kite on her back or something more in character! How interesting to have visited Chernobyl. I have watched some really fascinating documentaries about that place.
Oh @naughty_boob Iām quite some way of being able to swing my ponytail but when I do, rest assured I will post a similar pic to the one youāve posted right here!
I was shocked yesterday when my chemo nurse told me a relatively nearby hospital doesnāt offer cold capping! I thought it was standard everywhere. The knock on is that my hospital then gets more patients from that area who want to cold cap.
Thank you for your response ladies. All so supportive.
Unfortunately Iāve exhausted all avenues. Itās been such an added upset on top of everything else.
My local hospital is The Royal Cornwall Hospital Trust at Treliske. The cold capping service was available there until April, when they withdrew the service in order to get increased patients through their chemo. I totally understand and accept the reasoning behind it and would not dispute getting treatment to others. But it just feels like another thing that this cancer journey will take from me.
I have looked at another Trust. The closest is 60 miles from me in Derriford, but due to capacity issues this will delay my treatment by 5-6 weeks which my oncologist does not want me to do. So is not an option.
Iāve explored the option of hiring the Penguin cold cap kit. But this requires dry ice to freeze the packs and the hospital will not allow the use of dry ice into the hospital for H&S reasons.
Iāve contacted Paxman direct, but there is nothing that they can do if the hospital have withdrawn the service.
Iāve contacted PALS but have been told that the service cannot be offered to me.
My last resort is to buy and take with me, my own cold cap kit. Iāve found on online one called Icekap, that uses maluable frozen ice packs. I have no idea of how effective it will be, but I feel really strongly about trying to preserve my hair.
Iāve been advised that my chances of keeping my hair are fairly high. Although my hair is fine, i have lots of it. Iām also having the lower dose of Paclitaxel and am informed that the success rate is worth doing.
Does anyone have any experience of using the Icekap and its success rate?
@hanhar82 youāve certainly worked really hard on the cold capping possibilities - all credit to you. It just worries me what theyāll withdraw next, as its the little things that make this rubbish scenario bearable. If you havenāt already then consider joining one of the hair, eyebrows, wigs etc sessions for care advice. If itās about number of chemo sessions available on your unit I just wonder whether theyāve considered moving a machine to a waiting area and cold cappers doing the last hour there after the chemo has gone through. Perhaps post details of the system you are considering on another thread as well as this to optimise the chance of more responses.
On my D day anniversary, great ideas ladies. I guess I donāt stay still long enough to benefit from a spa. Chernobyl sounds fascinating if thatās the right expression. Iāll come up with something for 29th to remind me Im not frozen in the headlights the way I was last year.
@vicstar85 Iām a bit puzzled about you not having Phesgo since your last chemo. I changed from cancer centre to home service when I had Herceptin alone, it was a relatively smooth transition to continue 3 weekly regime. As already suggested I would chase up and see why.
@hanhar82 from someone who successfully ( thinning and two small patches above my ears) cold capped I canāt believe that centres are not offering the service. I know itās time consuming and takes away treatment chair availability for others but our hair is part of our identity. Which trust are you with? Your treatment plan was the same as me, so such a shame you canāt attempt cold capping.
There are quite a few women on instagram in the US who did their own version of cold capping. Even taking bags of ice in a cooler box or gel packs and their other half changing the bags over as they melted. Itās wasnāt easy at all. Some have had good success.
I have had 4 CTās now and have another in January. I have lung nodules that have decreased in size twice and the 2nd CT showed an 8mm lymph node in my SCF on the other side which was still there 9 months later. They are too small to take action but are being monitored still (my consultant said I didnāt need more CTās).
I also had itchy forearms but it stopped when finished blood thinners (i was also taking antibiotics for 4 weeks). I was taking antihistamineās 4 times a day and using natural moisturiser. My oncologist suggested changing from Phesgo to Herceptin (I persevered with Phesgo fortunately as I had 4.5mm live cancer after my op but my oncologist didnāt want me to have Kadcyla).
In Northern Ireland cold caps arenāt used as they still think they cause brain cancer I think unfortunately. Hopefully they will follow the rest of the UK shortly. The above link is for Penguin manual caps which you can use hopefully. Ć donāt have experience of them but I did coldcap twice.
Was going to say similar, thereās definitely a lot more experience with other cold capping systems and DIY versions in the US since the cost of Paxman isnāt always covered with insurance and itās quite pricey if you have to pay for it out of pocket. There was one woman who literally put an ice pack on her head and kept the hair there but lost it everywhere else.
Hi all I am so sorry I havenāt read much of the thread as I am already spending too much time thinking about all things cancer.
I got diagnosed with stage 1 grade 3 triple positive cancer in October (just before my 30th - yay). I have names my cancer Cunty Cruella - sheās a invasive ductal carcinoma (is that it) and I also have several DCISs.
I started my first chemo on the 7th and am getting 6 rounds Docetaxel, Phesgo &Carboplatin. Zoladex for the ovaries.
I also am doing scalp cooling and some cold socks and gloves to prevent neuropathy.
After first round I felt fine for a day and after that it hit me like a truck - vomiting, the shits, tiredness, sadness, all of it. Getting better not though even though tummy is still off and really having to force the food at times. Also got some bleeding (thought it was my period) yesterdayš¤£
I have a one year old daughter so no rest for the wicked and on with it!
Super nice to read from everyone that it does get better though and this is only temporary!
Hi @lmack95 so sorry to find you on the thread, itās a long one so reading it would take a fair bit of time! As you say its important to balance how much you read about cancer and its treatment and how far you keep your thoughts elsewhere. Yes you are probably at a particularly difficult stage trying to cope with the chemo after the shock of getting the diagnosis - and tough with a little one to look after too. Try and deal with this rubbish one bit at a time and donāt try and think how youāll manage the whole lot. I hope youāve got some support to take some of the household and family jobs on to give you a break. Eating is a matter of experiment and little and often. It either tasted weird or not at all to me and I grazed on mango, melon and ginger biscuits quite a lot! I am gradually introducing more things. Iām through the chemo and radiotherapy stages and now with 3 weekly herceptin it does feel like Ive got a lot of my life back. Hope things start to improve for you soon.
Hi all, a while since Iāve posted but Iāve just been waiting for my oncology appointment to discuss Radiotherapy and any further treatment as Iāve completed chemo and had surgery. I was hoping for a start date for Radiotherapy but I havenāt been given one yet but was told it will be 3 or 4 weeks after my initial appointment, havenāt got a date for that either! Iām thinking it could even be after Christmas now Also Iāve been offered to join the Radical trial, which means you only get 9 phesgo treatments instead of 18. Apparently the trial is to determine if 9 doesnāt make any difference to likely return of cancer in 5 years. Has anyone else been asked to join the trial? If I donāt then I will be switched to Herceptin for remaining treatment. I am suffering with neuropathy in my foot and itchy hands which are both possible side effects, so if shortened treatment would ease this it may be worthwhile. Really difficult decision
Hi @lmack95 welcome to the group. Sorry to hear of your diagnosis. You have your hands full with treatment let alone a 1 year old.
If you have diarrhoea please ask your team for Imodium/loperamide as many taxane treatments can cause it and going to the toilet too much can make the chemo leave your body too quickly.
Iām assuming they are doing the same with Phesgo now. Seems a bit odd they want to switch to Herceptin rather than stay on Phesgo if you donāt want to join the trial. Have you asked why? Can assume it may be cost as Phesgo is more expensive.
I would think the neuropathy is more to do with chemo than Phesgo, you could call the BCN nurses to talk this through 0808 800 6000.
Afternoon and welcome to you @lmack95 - what a rubbish 30th birthday present. That is the most potty-mouthed and probably the most apt name given to bloody breast cancer that I have so far encountered! And letās face it, itās how we all feel about it. One of my favourite quotes somewhere way back on this thread went something along the lines of an oncologist saying āGive me a year of your life now and I will give you back 50ā. Itās a fact that going through it at all is pants, let alone with a 1 year old, so hang onto why youāre doing it and you will get through it like the rest of us.
Hello @sassy3, nice to hear from you. I think @galdiolus was offered this trial you speak of. She is currently trekking the Sahara raising money for breast cancer so hopefully will respond on her return.
There has always been the suggestion that I would swap to Herceptin after surgery, so that hasnāt changed its just whether I want to finish early. Oncology have told me itās because Iāve had a pathological complete response to the chemo and phesgo.
Hi Carrie thank you for the lovely welcome. Yes we have things set up in a good way at the moment I think alway a worried little one gets ill though. But itās going to be finešŖš¼
Thank you naughty_boob, just spoken to the specialist and they also recommended the immodium!
I am just really getting used to taking medicine and not just sipping teas and hoping for the best. Also the A&S Dr completely threw me off as he said not to take immodium anymoreš« honestly sometimes the disciplines are so isolated.
However, sheāll probably opt to jump off a cliff with only a kite on her back or something more in character! How interesting to have visited Chernobyl. I have watched some really fascinating documentaries about that place.
Also Iāve been offered to join the Radical trial, which means you only get 9 phesgo treatments instead of 18. Apparently the trial is to determine if 9 doesnāt make any difference to likely return of cancer in 5 years. Has anyone else been asked to join the trial? If I donāt then I will be switched to Herceptin for remaining treatment. I am suffering with neuropathy in my foot and itchy hands which are both possible side effects, so if shortened treatment would ease this it may be worthwhile. Really difficult decision 
And letās face it, itās how we all feel about it. One of my favourite quotes somewhere way back on this thread went something along the lines of an oncologist saying āGive me a year of your life now and I will give you back 50ā. Itās a fact that going through it at all is pants, let alone with a 1 year old, so hang onto why youāre doing it and you will get through it like the rest of us.