Lanreotide hair loss? help!

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Lanreotide hair loss? help!

Postby member_38167 » Thu Aug 08, 2013 6:17 pm

Hello,

I've seen on previous posts that other people have experienced hair loss courtesy of lanreotide. I started taking it 9 months ago and about 4 months later my hair started falling. After 4 months the dosage was increased and sure enough about a month ago, even more hair started falling. Sadly the lanreotide is not doing very much- IGF1 still at 80. I'm now probably going to have radiotherapy (which let's face it is not going to do my hair any favours!), but in the meantime, and until my levels normalise, its on with the lanreotide, and away with the hair!

I mentioned it to my Endo last week and he just shrugged and said it was a rare side effect, but that maybe it was the Acro anyway. I think this is highly unlikely as my first Acro symptom started 10 years ago and hairdressers have always been remarking how thick my hair is rather than the other way round.

Up until now, I've been aware of the loss, but its not been visible to others I don't think. The last couple of weeks I can start to see the thinning in my parting and frankly I'm finding it really hard to deal with. I can see that from the medical point of view it might not be of much consequence, but psychologically its very difficult - the first really visible sign to anyone that there's anything wrong with me.

So does anyone have any advice for me on anything I can do? Would Regaine for women help? How much am I likely to lose and will it ever stop? Any suggestions of where I can go to for help/advice on styles, wigs etc. I know that this might be something i just have to learn to live with, but if I know how bad its likely to get and have a plan of how I'm going to disguise it, I know I'll cope with it better.

Thanks.
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Re: Lanreotide hair loss? help!

Postby Pat » Fri Aug 09, 2013 3:07 pm

I've looked at uncommon side effects which may include some hair loss; there is also noted that thyroid hormones shoud be checked, particularly during first year of treatment.
Under active thyroid can cause hair thinning or loss but possibly these hormones would have been checked. I hope others on this medication can offer their comments for you.

Alison, our endocrine nurse is away next week, but back on phone Monday 19 August if you want to call her 0845 450 0377 between 6pm - 9pm

For frontal hair loss, may I suggest wider material hair bands so that you can have the rest of your hair visible; Claires Accessories or amazon should have some. I do understand how hard this is for you
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Re: Lanreotide hair loss? help!

Postby member_38167 » Fri Aug 09, 2013 4:10 pm

Thanks Pat. I forgot to ask the Endo about my Thyroid levels but can't believe they wouldn't have monitored those as standard. I will ask also my GP to check out my iron levels as I do have pernicious anaemia which did cause hair loss prior to diagnosis, but that all seemed to regrow fine once I was on the B12.

I mentioned it to Alison at the AGM which was shortly after the problem started, and she was optimistic(ish) that it might be just my levels coming down or just getting used to the meds that would then settle down, but neither of those things seems to be the case.

I reckon even if the radiotherapy is successful I'll be on lanreotide for at least 2-3 years so I'm trying to work out whether I should cut my hair, leave it long, colour it or leave it alone, choose my wig now or just see how it goes! Hopefully someone out there is a couple of years ahead of me on this and can give some advice :) Just don't want to spend the next however many months obsessing about how much is going down the shower or coming out in my brush every day!
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Re: Lanreotide hair loss? help!

Postby Pat » Sat Aug 10, 2013 9:01 am

I really hope this resolves itself and you hear from others with their experiences. To think about, there is an option such as hair weaving by professionals - this article is informative- http://www.dailymail.co.uk/health/article-2109712/I-going-bald-hair-enhancer-weaved-magic.html
Your pharmacist should be able to help advise on best shampoo to use at moment. Your hairdresser could help in cutting/styling and advice on colour too.
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Re: Lanreotide hair loss? help!

Postby plum » Sat Aug 10, 2013 9:32 pm

hi

i too am having hair loss and one endocrinolgist suggested that it was due to the lanreotide.

i found that pre diagnosis my hair was growing strangely: very fast at the front and sides and hardly at all at the back. but it was still THICK. and now my hairslides just fall out.

what i do sometimes is use clip-in hair extensions. but be warned: they made me look and feel much better but at night when i took them out i had a reminder of what i really look like and that doesn't make me feel good. i don't need any more remidners of this disgusting disease thank you very much.

i've been on lanreotide since feb 2011 and yes it took a few months for the hair thinning to be noticeable. and yes - it was (and is) very upsetting. i can honestly say that my hair has not started to grow back. it may have reached a point where it is not getting any thinner but i am not sure.

i have not tried regain or any other treatment. i use henna to colour my hair. i also wash my hair less regularly than before. partly becasue i find it too upsetting to NOT feel any hair to wash. i no longer go to a hairdresser - it now grows so slowly and seems to have shortened itself.

not sure if this helps.
take care.

plum
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Re: Lanreotide hair loss? help!

Postby member_38167 » Sun Aug 11, 2013 3:47 pm

Hi Plum,

Thanks for your reply and I'm sorry you're going through this too - I know its not much fun.

I've decided to ask my GP to check my iron and thyroid levels just to double check its not anything else obviously wrong. I've also found a local cancer charity that gives hair advice that have agreed to talk to me too, so I hope they might have some suggestions about how to cope with thinning over time.

One thing I thought of that you might find helpful. Pretty much ever since I can remember, my Mum has worn a wig. It's one of those bizarre things that because its always been there I never really questioned, and at some point I evidently decided that it was because she was losing hair. When I started losing mine last year pre the anaemia diagnosis I plucked up the courage to ask her about it, because if she had suffered with alopecia it was obviously relevant for me. To my surprise, she told me that it was nothing to do with hair loss - she just preferred the style to her natural hair. As far as I can tell, it is an absolutely trivial fact in her life and no-one ever remarks on it or questions it. She's now in her later 70's, but I think its makes her look younger.

I know its different to decide on such things to having them thrust upon you as it were, but I do find it comforting to think of her in all this.

Wishing you luck for the future.

Fiona
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Re: Lanreotide hair loss? help!

Postby member_38167 » Thu Aug 15, 2013 3:06 pm

Kindly GP has readily agreed to check iron and thyroid levels and has shaken her head over Endo's shoulder shrugging. I know it may be the lanreotide, but its nice that someone is at least ruling out something that they could do something about. First time I've actually met the GP I'm actually registered with, and she was great! Actually knew something about acro and took some time to ask how I was coping with it all - makes such a difference. Wish I could convince the nurses at the Endo clinic that if they just cracked a smile once in a while it might have a positive impact on my blood pressure!
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Re: Lanreotide hair loss? help!

Postby plum » Sun Aug 18, 2013 8:13 pm

hi
having continuity of care is very important isn't it? i too have found a GP in the practice who is nice and caring and now each time i make an appointment i only make it with him. sometimes i say to reception that the dr wants to see me. ie i cannot just see anyone else.
can you do the same to make sure you always see this nice GP each time?
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Re: Lanreotide hair loss? help!

Postby member_38167 » Tue Aug 20, 2013 8:50 pm

I'd love to, but what with the constraints of their availability and my availability (given work, childcare and other medical appointments) it's all a bit complicated. I've at least learnt from experience which GP at the practice I definitely don't want!

The cancer charity I went to see last week were very kind and helpful too, and really couldn't have offered me any more help or support. My difficulty is that although rationally I am able to think about what I might do if I lose my hair (probably get a wig if it got too bad), emotionally I feel like a horse that's got to a fence that it's just refusing to go over! I just keep trying to tell myself that it's one of those kind of things that would be horrendous and completely thought-consuming for a while, but in 6 months it would be more of a minor thing and in a couple of years I'd probably barely consider. At the moment though, I'm still holding out hope that my blood/thyroid tests might suggest its not the lanreotide - we shall see.

Fiona
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Re: Lanreotide hair loss? help!

Postby plum » Thu Aug 22, 2013 7:32 pm

i like the horse-fence idea.

good luck with the thyroid tests. the wonderful endocrine sister at the hospital tells me to take one day at a time and i have found that philosophy does help to cope with this whole thing. so i no longer really look ahead and just deal with things when they arrive. that does have its drawbacks and i can see that if you have children then that might not be very helpful!

take care and have a good bank holiday weekend

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