Hair thinning

Hello I was accepted to take part in a cancer Trial for CLL Chronic Lymphocytic Leukaemia in January 2018. During the trial I have had a combination of months infusions and a trial medication in the form of a capsule. Five months ago one of the side effects of hair thinning started and is now at the stage where I have been fitted for a wig. The hair has started to grow back very slowly. Could you advise what I can use to help. I am now allowed to take two supplements of Zinc and Biotin as there content doesn’t react with the trial drugs. I am coping realitvly well with the other side effects and my Luekaemia is responding. I cannot be cured but can hopefully be able to have a better daily life living with it. My aim that keeps me going is that one day all these trials will prove beneficial to future patients diagnosed with the same cancer. Thank you Sanphil

Answers

  • RobertARobertA Posts: 542 ✭✭✭✭
    Hi @sanphil ;
    My niece found herself in a similar situation five years ago.  She had lovely fine, long blond hair and lost it all. It took nearly six months before it started to regrow and when it did it was black and curly, but she is happy because it is now quite thick and luxurious. 
    I am sorry that I am not in a position to offer any advice but a number of community members have undergone chemotherapy and I am sure that someone will come up with some ideas before long. 
    We are a very friendly group of people and you are very welcome. 

    Rob x 
  • sanphilsanphil Posts: 5
    Hi RobertA
    Thank you very much for your reply. Reading your comments about your niece has at least given me some hope. The Trial drug that I am on has only been introduced during the past 3 years so they are still in the very early stages of compiling all the data relating to side effects and solutions for them. My hope is that this drug helps and will pave the way for being available to treat CLL patients if it is proven successful so I will continue and hope in time the same happens to me as your niece with my hair.

    Sandra
  • RobertARobertA Posts: 542 ✭✭✭✭
    Hi Sandra @sanphil
    It is amazing how quickly progress is made in the fight against cancer.  I have an advanced and aggressive prostate cancer and I have had all of my testosterone removed as the cancer thrives on it. I have a quarterly infusion and though this treatment cannot get rid of the cancer it does halt/slow its progress, hopefully for a few years yet. Unfortunately, the side effects are not great, but I have learned to live with them and my wife and I enjoy going out for walks, meals and holidays.  

    Interestingly, my urologist told me last week that a new drug which does not involve testosterone removal and consequently has no known side effects is now available. It is apparently very expensive and of course, too late for me, but going forward, it will be a huge improvement on current treatments. All this in two years, and why would there not be big advances in other cancers like yours also. 

    My niece who is now 43 and lives in Texas, had a failed bone marrow procedure following which she was placed on a trial procedure whereby she has an infusion every three weeks. I understand that her treatment has now been cleared for general use. It is working and she is happy and positive. 

    I have asked her her if it is OK to show you a photograph, including hair, and she is happy to help so here is one of her with my lovely sister. 

    Rob x 



  • SunshinedaffSunshinedaff Posts: 737 ✭✭✭✭
    @sanphil ;

    Hi Sandra, 
    When I was going through chemo and lost my hair, my hairdresser advised me to continue to use shampoo and conditioner as he heard it may help with the re-growth when my hair returned.
    He also used to give me head/scalp massages for the same reason.

    Since my hair has grown back it is patchy, but apparently it was going a bit thin before cancer. I now keep it very short as I don't want it to interfere with my swimming, that would just be annoying!

    There are a couple of products that say they help with thinning hair, but I can't comment on their effectiveness, and I guess you would need to check the ingredients to ensure they are compatible with the trial your are on.
    Nioxin Hair Thinning treatment, Regaine for men (although I don't know why just men!). 

    Bless you on talking about your trial and the hope you have for others in the future. It reminds me of my dear sister who was accepted onto a trial for stem cell research in the U.S. She had already been given a terminal prognosis, but she was prepared to try anything to reverse that. They only accepted her because of her tenacity and fighting spirit. It was an exceedingly tough and gruelling process, she underwent it twice. When I read about stem cell research and the breakthroughs they are making, I think of her, in the hope that although it didn't change much for her, the data that Dr's etc would have gained by her taking part, has gone on to help others today. 

    If you decide to try any of the products let us know how it goes.

    I hope you have a good day.

    Lou x


  • SunshinedaffSunshinedaff Posts: 737 ✭✭✭✭
    @RobertA ;

    Hi Rob, 

    What a lovely picture of your sister and niece, it is interesting how our hair can come back a completely different colour.
    I used to be a red head, now my hair is very dark, which is really weird for me. Funny though, I used to hate my red hair when I was younger, and always wanted darker hair! hahaha. Not any more!!

    It's good to hear your niece's treatment is being effective and it's going well for her.

    Lou x
  • sanphilsanphil Posts: 5
    @RobertA
    I am so sorry to hear of your situation with cancer Rob it’s amazing isn’t it that we do learn to cope in some way with related side effects issues, where the strength comes from is a mystery. I firmly believe that we are prepared to accept any form of relief that will prolong the inevitable. I have had it said to me on many occasions that I am very brave to do this.I do not count myself as being particularly brave as from day one in life we are all on trials that we test and then move onto to the next and I have always replied with this statement. 

    The photograph of of your sister and niece is lovely thank you.

    i will have to run your suggestion with regards to the shampoo past my Research Nurse first. They have to check all ingredients out before I can introduce anything new just in case there is any thing that would react with the Trial drug I am taking.

    Every step of the Trial is monitored as all the data is crucial. It’s another form of a security blanket around me for which again I am very thankful.

    Take care and continue to enjoy your outings with your wife.
    Sandra
  • sanphilsanphil Posts: 5
    @Sunshinedaff
    Thank you for your comment. By mistake I thanked Rob for the advise on the shampoo. So again thank you for letting me know. As mentioned to Rob I will run it past my Research Nurse regarding the ingredients content. 

    Your sister was so special. Everything that she was going through didn’t stop her from wanting still to help. Recently whilst waiting for my treatment on the Cancer Unit another lady started talking to me just enquiry the usual things concerning hers and my cancer. In the conversation she began to tell me about her brother who lives in Belgium. His treatment was to have Stem Cell replacement and this was 25 years ago. So although it takes a long time with years of trials pioneers like your sister do pave the way for a lot more years of living.

    Take care
    Sandra
  • RobertARobertA Posts: 542 ✭✭✭✭
    edited January 16
    Hi Lou
    Thank you for your lovely post. So sorry to hear about your sister. You must miss her a lot. 
    I adore my sister who is 82 and disabled and now lives in an assisted living  accomodation near to my niece.  My niece is courageous and uncomplaining and she looks after her Mum so well. It is hard as we get older because the distance between us makes it difficult to be there for them. 
    British Airways do a direct flight to Austin from Heathrow and Mary and I are planning a visit this year now that insurance is no longer an issue. Can't wait.

    As for my hair, it has been grey/white for over 30 years now. My great nephew saw a photo of me in my cricket team from the 70s and expressed surprise that I had black hair. Don't think he can imagine that I was ever young.  Seems a long time ago to me as well! 

    Rob x

  • RobertARobertA Posts: 542 ✭✭✭✭
    Hi @sanphil ;
    Good evening Sandra
    Thank you for your kind comments.  I am 73 and I have had a happy and fulfilling life, so whatever is left is really a bonus. In a strange way, the cancer has prodded me into making sure that I do not waste a minute and Mary and I make sure we ignore the small stuff and concentrate on having fun. 
    I am more concerned for my niece and other young people who have to carry the cancer burden throughout their lives. 
    I agree with you that we cancer survivors do have to find a certain resilience and we should be proud of ourselves for the fortitude we manage to show even though we have no choice. After all, our families and friends do not want to be constantly regaled with our problems and so we put on a smile and keep going. 
    Have to admit, thst I have had issues with depression which I have documented in other posts and I am humbled by the horrible treatments which other people have to cope with, and do so with humour and  courage. 
    I do hope that your treatments continue to be effective and who knows what progress will be made going forward. 

    Do keep in touch 

    Rob X 
  • SunshinedaffSunshinedaff Posts: 737 ✭✭✭✭
    @sanphil ;

    Hi Sandra, 
    Thank you for your lovely words. 
    It is remarkable the way medical research has moved forwards so much to improve the chances of successful outcomes for cancer patients. I am always so thankful for all those who dedicate their lives to finding cures and treatments.

    I hope the hair products work out for you.


    Lou x
  • SunshinedaffSunshinedaff Posts: 737 ✭✭✭✭
    edited January 16
    Hi Rob, 

    It is lovely that you are able to plan a visit to see your sister, that will be very special for you all. 
    It will be 20 yrs this year that my sister left. It doesn't seem that long, I was expecting our first child and we had just moved. I talk about her a lot with my girls still, things come to mind. We were very close, she was very brave.

    As for the age, I have been counting backwards for the last 15 years or so, I am almost 21 again!! =) 

    Lou x
  • drdspgdrdspg Posts: 5
    I have not managed to find anything that has helped me re fine and thin hair. I have lost my hair 4 times over the years with different chemo episodes and each time it comes back even thinner and finer. I am so self conscious about it and have spent a fortune on any hair product that claims to help without any luck. Still hoping to find that magic answer....
  • sanphilsanphil Posts: 5
    Hi drdspg
    my thoughts are very much with you concerning thinning hair. I know exactly how you feel. Nioxin hair treatment was recommended to me by one of the other kind members. I don’t know where you live but here in the UK I have managed to source the product in a shampoo and conditioner quite easily on-line via Amazon.There is also a treatment solution that you can use with the shampoo and conditioner but I found that made my scalp go red so I have just started using the other two in this range.its only been two weeks and I can already feel a small difference in my very fine hair. Obviously you need to have it checked out by your medical team in case the ingredients in it react with you medication. Also my research nurse via the specialist recommended taking Zinc tablets every day. I don’t know if it was a coincidence or not but my hair actually has stopped falling out. I still hav3 a little bit on the comb when I have washed it but that is normal for everyone I think. Hope this will help you please don’t totally despair take any advice you are given but always check it out via your care team.
    Sandra x
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