How can I help my Sister with Stem cell treatment & hair loss?

This topic contains 15 replies, has 7 voices, and was last updated by  davidainsdale 3 years, 4 months ago.

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  • #137682

    allrelative
    Participant

    So my sister has been very brave she is on cycle 4 of 6 and is just getting on with it…she is having 2 visits a week of chemo injections and steriod tablets. She has been told her blood levels paraproteins are reducing well and consultant is bery happy.

    As I said she has been very positive with the odd wobble but just got on with it. So now she has been told she has to have stem cell treatment…sorry Im not too sure what it actually is but she will be hooked up to a machine and will have to stay in hospital for up to 3 weeks plus her hair will fall out. She has now freaked and is struggling. Ive told her to try and look at it as the end of her treatment and the hair loss is just another side effect but this treatment will enable her to move on and live a normal life…and it will grow back. I just dont know what else I can do or say…any suggestions???

    #137683

    mickack
    Participant

    Hi

    I have lived with myeloma for 4 and a half years diagnosed at 47 2013..i am now 51…same start as your sister..6 months on first chemo..then 2 weeks at the Freeman hospital Newcastle for stem cell transplant and high dose chemo…about a week before the stay in hospital your sister will “be hooked up to a machine to have her stem cells harvested..which means taken out..takes about 4.5 hours..pretty easy no drama..then the first day in hospital she will have chemo..day 3 she will have her stem cells put back in..the first week in hospital is ok..the second week she may feel a little tied and sick with the chemo..everyone is different of course…I was ok :)..hair does fall out but starts to grow back after 2 months..nice and fluffy :)..i then had 2 fantastic years of drug free remission…of course it comes back so I stated another 6 month of tablet chemo…then Christmas 2016 I had my second stem cell transplant and high dose chemo in hospital for 2 weeks…again same routine and 1 years remission this time..it came back and I am now on a drug called revlimed..i am still here:) and there are new drugs on the horizon..so the longer I live I may get these new drugs.it’s all about time and living longer

    ..look at diet..cancer fighting foods …fruits and herbal meds to aid immune system. All herbal meds i get off ebay (Thats something you can do for yourself and control)drink plenty water for kidneys..I drink 3 lrts a day…she and you can do this!! ..basically we all have no choice..trust consultants..and maybe learn to meditate..clear the mind and think positive..it helped me anyway (we are all different and what works for one etc..Good luck…

    Mick x

    #137684

    allrelative
    Participant

    Mick thanks for replying and for sharing. This is what she will have. She is scared…the thought of being admitted and the machine etc and of course the hair loss.

    #137685

    paulapurple
    Participant

    Tell her not to panic. I have had 2 cycles of VTD, 3 of CTD and  DT PACE. I lost my hair after the DT PACE at the end of January. It’s growing again and is now about 1.5 cm long. I am to have stem cell harvesting (as Mick says above) on Monday followed by a stem cell transplant in May so my hair will come out again after they give me the high dose chemo (Melphelan) before giving me my stem cells back. This is the link to a video which explains what happens https://www.myeloma.org.uk/videos/high-dose-therapy-and-autologous-stem-cell-transplantation/

    There is a good Myeloma UK info pack on it to0: https://www.myeloma.org.uk/information/myeloma-uk-publications-list/myeloma-treatment/high-dose-therapy-and-autologous-stem-cell-transplantation-infoguide/

    It sounds scarier than it is but it isn’t a walk in the park either. The consultant and cancer specialist nurses will talk her through it or she could ring the Myeloma UK info line where there are lovely caring staff who are very knowledgeable.

    Most NHS trusts give you some paperwork for a free wig. Tell her to get this organised now as it can take a while to get sorted. A company comes out to my hospital and you make an appointment with them; they were lovely and took great time and care over finding the ‘right’ wig for me. I had already lost my hair by then but it helps for the wig company to see you with hair so they know how you usually wear it, colour and cut etc. That way, if she’s really worried about it she will already have her wig before she loses her hair. I’ve had lots of compliments about my wig; they’re so good now. When I went to the doctors the other day a lady said she loved my haircut; I choose whether to just say thank you or admit it’s a wig, depending on how I feel!

    Personally I’m not bothered about about being bald and so I don’t wear my wig all the time. I have African friends so they taught me how to do head wraps which make a change. When I go out my friends are used to seeing me bald, or with a head wrap or the wig, depending on the weather and my mood!

    When undergoing stem cell transplant it’s best to shave your hair off before you go into hospital; that way you avoid it all coming out once in hospital, which is much more difficult to deal with and happens at a time when you feel quite ill.

    I write a blog about my experiences and have written about hair loss a couple of times. If she would like to read them this is where to find them. mymyeloma.wordpress.com  I enjoy writing the blogs and many of my friends read it; it stops me having to explain it all the time and is a way of getting my feelings out.

    Remind her that she has the best chance of remission for a while with a stem cell transplant.

    Good luck.

    Paula

     

    #137687

    davidainsdale
    Participant

    Hi

    I had my stem cell transplant over 4 years ago, and yes , all my hair fell out but it did grow back quite quickly and for me was not a problem. I think it is probably different for women rather than men about how they feel.

    I suggest that your sister has a chat with your local Macmillan centre. They deal with all types of cancer and regularly give advice to ladies who are on treatment and lose their hair.

    In terms of getting through the stem cell transplant, my suggestion is to keep as fit and active as you can an dthen focus on things you would like to do afterwards.

    Hope this helps.

    David

    #137691

    robert0439
    Participant

    Hi. I have just celebrated 12 weeks since my stem cell transplant in Nottingham City Hospital where all the staff, were just amazing. I am diagnosed now as being in a “very good partial remission” which is what the majority of patients achieve. It is indeed as rocky ride at times so tell your dear sister to stay strong as it’s a positive attitude that can really help. She will indeed lose her hair as we all do however, I do appreciate that it is much harder for a woman than a man, but again like me, after a few weeks it will start to grow again. Drinking plenty of fluids (and I mean plenty) and eating nutritious foods, will help with her recovery as she will also lose weight. It will all add to her having the longest remission and quality of life. My very best wishes to her for the future.

    By the way, my youngest son James is running in the London Marathon today with “Myeloma” splashed all over his running vest, in order to raise awareness. His bib number is 32371, so if anyone is down there and manages to see him, please give him a shout and together we can in time beat this disease.

    Kind regards, Robert Gale

    #137692

    davidainsdale
    Participant

    Hi Robert

    Good luck with your recovery, expect to feel tired for a months.

    Fantastic to see that your youngest is running the marathon today, is there a weblink for donations?
    David

    #137693

    allrelative
    Participant

    Thanks for your replies Robert and David it really does help me to get a perspective on it all. It’s the City at Nottm where she is also going Robert! Under  professor Russell..shd hasnt had her meeting yet though with him.

    Spoke to my hairdresser this week who cuts and styles wigs for a couple of ladies who have lost their hair through chemo so may approach that with her.

    Fantastic news about your Son hope he enjoys every minute

    #137694

    robert0439
    Participant

    David et al. Thanks for your feedback. My son is not running for the Myeloma charity as he ran the marathon before and because he did it in under 3 hours, gained an automatic entry for this year. As I tell everyone, if they are looking to offer a little from their hard earned money, then please do this to any charity of their choice as this would be James’ wish.

    The fatigue I was initially feeling (I am 66 by the way) completely went away after around 6 weeks following my SCT however, as David as mentioned the tiredness does take a little longer. I am now sleeping pretty much as normal for around 10 hours though the night and waking up feeling like I want to take the world on. Never let a day pass that you don’t do something which is the way I manage my Myeloma.

    Nottingham City Hospital is really a great place and as mentioned before, have nothing but praise for them. Only issue is the food when in the isolation ward, as it was terrible so a good job I did not have any appetite! Anyone who is unfortunate enough to have Myeloma, will have no one better than Professor Russell and his team to look after them. Your sister could not be in better hands.

    When your sister has her stem cells removed, she will be under “Angie” who is the senior nurse in the stem cell extraction area. A really wonderful person who is so passionate about what she does and who she cares for. A credit to the NHS who have looked after me so well. I only have praise and respect for them.

    Regards everyone.

    Robert

     

    #137696

    allrelative
    Participant

    Ah great photo easy to identify in that illuminous vest 😁. So with regards to her hospital stay will she be allowed visitors? Or is it a no go zone due to infection? Can she have anyone with her whilst having the treatment? She’s so scared bless her.

    At the moment she hardly sleeps at night and more recently her appetite has just gone…she feels sick all the time even after an anti-sickness tablet again not sure if it’s all the worry

    #137697

    robert0439
    Participant

    Hi Again. She will be allowed visitors into her room but should obviously avoid them if they have any coughs or colds, as her immune system will be pretty much shot. Saying this, she will most probably not want that that many visitors as she will be tired and just want to sleep for most of the time, as I did.

    During the stem cell extraction, she can have someone with her as my wife stayed me for all of the time. We both chatted and read a book as I was hooked up to the machine for around 4 hours for three consecutive days, in order for them to collect the amount of stem cells required.

    I had a Hickman Line fitted before the procedure in the Royal Derby Hospital where I am now being treated for after care, as this makes it far easier during treatment to take blood samples out and pump in all the stuff that they need to. A little discomfort when it is fitted, but nothing too bad. The removal of the line after treatment is painless.

    Hope all this helps.

    Regards,

    Robert

    #137698

    allrelative
    Participant

    <p style=”text-align: left;”>So pleased she can have someone with her. So when they say up to 3 weeks in hospital is it because they want to keep you away from infection</p>

    #137699

    robert0439
    Participant

    From when she enters the isolation ward and obviously how she copes, it takes a minimum of around 15 days to complete the treatment before she is allowed to go home. It’s then that her recovery will start and where she will need people around her to help out.

    #137700

    tmcintyre
    Participant

    Can I suggest that next time your sister is at the hospital she asks to look at the machine that will collect her cells. I’m sure the staff will be happy to explain the procedure. There is a break between harvesting and transplant so she has time to recover from each procedure.

    #138247

    gmma
    Participant

    Hi

    I was diagnosed with non secretory MM in March of this year aged 46.

    I have literally just had a stem cell harvest this week & it was fine. The staff were really kind & explained the procedure really well. I had already read up quite a bit as this is just my way – I prefer to be informed but not everyone does.

    I was on the machine with a cannula in each arm for 6hrs & thankfully had a really successful harvest with enough stem cells for 2 transplants.

    Prior to this I had VTD induction treatment for 4 months. Despite being told by my consultant that my hair wouldn’t fall out it has been & is now very thin. I have found this really hard to deal with & still do. I know that when I go to the next stage I.e. High dose chemo my hair will completely fall out. My advice for what it’s worth is to be prepared choose a wig, get some coloured turbans & I also got a ring of hair that goes under the turban that is super cute & gives the illusion that you have hair.

    The whole situation is incredibly stressful & I have good days, bad days & horrific days. As I go through each stage I give it a mental tick & just try & think I’m closer to the end of treatment & a return to a more normal life. Still working on it!!

    I only joined the Forum today it’s taken months before I felt able to but I hope I can help & get help from other sufferers.

    I know that

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