New Here.

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Hi there, I’m new to this forum - I have recently been diagnosed with Chordoma, I’m in absolute shock and never thought anything like this happen to me. 

In all honesty I’m so worried about loosing my hair, I know that’s the least thing I should worry about, but I just can’t help it. Does anyone have any advice or words of support to look on a more positive side of it. 

  • Hello FlowerPower_26

    Welcome to the Online Community. I hope that you will find it as informative and supportive as I have done. I am sorry to hear that you have had a diagnosis of Chordoma. It is very natural to feel in shock when finding out such news. My emotions were all over the place when I had my own diagnosis. I found it helped to just go with the flow and accept that it was natural to feel this way and to reach out to others when I needed to. If you feel like talking to someone would help then I can recommend the Support Line (the number is below)

    I have found some information that may be of help and will pop a link below.

    Chordoma - Macmillan Cancer Support | Macmillan Cancer Support

    I understand how you feel about losing your hair. I was the same and it is perfectly natural to worry about it. Hair is part of our identity. 

    I will post a link to the Chemotherapy forum with the hair loss post. You might find it helpful to have a look.

    Hair Loss and Hair Loss treatments - Macmillan Online Community

    Hair loss will depend on the type of chemotherapy you are being offered. I did scalp cooling and if it is available for you I recommend you asking about it. It can be uncomfortable for the first 15 minutes or so but then it is bearable. They tell you that it can add time to your day but I found in reality it didn't add a lot. The cap has to go on for 30 minutes to cool down first but during this time I would be waiting for my bloods to come back. They would also be doing the pre meds, canula etc and talking to me about the previous cycle. After the last chemo infusion you have to keep it on for a while longer- but during this time I was going through my meds for the next cycle, talking through things with the nurses and having a cuppa. I reckon it probably added about 30 minutes in total to my day and I felt that it was worth it for the chance to save my hair. Most people who were doing scalp cooling seemed to be having reasonable results. My own result was good. I had no bald patches and just had thinning. I had scarves and a wig on standby but did not need them. I had some shedding- this is normal and does not mean it is not working- and I had regrowth during chemo. Even if I had lost my hair I would have continued to protect my hair follicles. I was also concerned about persistent hair loss which can very rarely happen. 

    I understand that it is not for everyone but am mentioning it as you are struggling with the hair loss. It is something maybe to talk to your doctor about and consider trying. My plan was to try it and see how I went. If it is put on and you don't like the sensation it can be switched off straight away. I am almost a year post treatment and I think that my hair actually looks and feels in better condition than before the treatments. 

    If you go to the link to the chemotherapy forum for hair loss- you can read my experience in a bit more detail. 

    I hope this helps a bit but if you have any other questions or worries about your treatment then please do ask. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much for all that information - I will definitely look into the scalp cooling though as it’s been mentioned a few times, 

    It’s a lot to take in but I am surrounded by lots of supportive people and even though my diagnosis was only very recent I am still trying to come to terms with everything which I know will take some time. 

    Thank you again 

    Annie x 

  • Hi Annie

    Yes, it is a lot to take in and can feel very overwhelming. For me trying the cooling cap was sort of trying to have some control over it. Some people are brave enough to just cut there hair off- I am not that person. It is a major worry for a lot of people who are undergoing treatment so you are not alone. People cope in different ways. My hospital had a wig lady who came in once a week and you could try on wigs. She bought a hairdresser with her who would style it to look more like your own hair. There are some very good wigs out there. My hospital also had a Macmillan volunteer who used to come and bring scarves and hats that she would show you how to tie etc. Again there were some pretty options. I think it also depends on the time of year- mine was summer time- so I did by some normal summer hats and had them on standby. Winter would be a good time to try some woolly hats etc. There was a lady who I saw at my hospital who was probably around 60- very elegantly dressed and her scarf and the way she tied it and had it to the side- just looked lovely. 

    Scalp cooling won't protect against loss of body hair. Mine went about 2 weeks after the first chemo- but wasn't too bothered really. Also it showed me that the scalp cooling did work as although I did shed a bit I still had most of it. 

    My hospital used Paxman.

    Paxman Scalp Cooling | Changing the Face of Cancer

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm