Lanreotide hair loss? help!

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Re: Lanreotide hair loss? help!

Postby member_38167 » Fri Aug 23, 2013 6:33 pm

Got blood tests back today and iron/thyroid is all normal, which I suppose is really good news, but does leave lanreotide as the presumed culprit. In addition, the registrar has written to my doctor saying he's going to increase my dosage to 120 - so all in all it's not looking great for the tresses!

The cancer charity are continuing to be very helpful and have offered me some counselling sessions and a visit to their special salon where they have a trained hairdresser in hair loss. I'm thinking I might be able to somehow ease my way into a wig by altering my current hair and colour more towards what I might end up with. Then maybe i can undergo a kind of transformation over Christmas or something (when most of my contacts will be with close family and friends) and present my new look for the new year...

Sometimes this all seems like some kind of surreal adventure in a foreign land!
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Re: Lanreotide hair loss? help!

Postby plum » Sat Aug 24, 2013 7:53 pm

re the counselling offer, i strongly recommend that.
i've been having counselling with macmillan and it is brilliant.
she really does seem to understand what this is about, more than other 'traditional' counsellors (if there is such a thing).....

would be excellent also i think to talk to their special hairdresser - what a great idea. how did you get in contact with them and is it on a referral basis?
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Re: Lanreotide hair loss? help!

Postby member_38167 » Sat Aug 31, 2013 6:04 pm

Hiya,

I found them just by googling hair loss help in Hertfordshire - they are called Cancer Hair Care and are based in Stevenage. I just emailed them, explained my problem and asked for help. There 'office' (its pretty small!) is right next door to a hair salon, so a couple of mornings a week they just take it over. They have been so kind eg. I rang them up and asked if they recommended a particular type of shampoo and next morning I get a large package with two bottles of shampoo (Faith in Nature Rosemary shampoo - available from Oxfam apparently) carefully wrapped up in tissue paper and ribbons - it was the ribbons that really got me!

I definitely think the counselling is a good idea. This is a fence this particular horse needs to get its head around!
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Re: Lanreotide hair loss? help!

Postby plum » Sun Sep 01, 2013 5:56 pm

hi and thanks for the suggestion.
i see what you mean about the ribbons - how kind and full marks to them for realising that a bit of effort makes a big difference.

i think i'll try googling also .... my hair has suddenly decided to fall out a bit more and there has been no apparent other change ie not changed medication / dose or anything .......
hope you have a good week
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Re: Lanreotide hair loss? help!

Postby member_38167 » Thu Oct 24, 2013 4:34 pm

Just updating the status on my hair thinning just in case anyone else goes through this in the future.

Thyroid and iron levels all came back normal leaving lanreotide as the presumed culprit. I've been thinning for about 9 months now.

Hair loss continues at a low but steady rate, though for the time being only noticeable to me. It's similar but slightly worse to what I had following pregnancy.

I decided to face my fears somewhat by taking a preemptive visit to the wig department in Selfridges (well, I've got no experience to go on, but I thought they'd probably have good ones!). My rationale was that I'd be better able to cope with it if and when I need it if I'd already done a bit of research. This slightly backfired in the sense that it turned out that I have too much hair currently to actually try wigs on :D! Was slightly freaked when their wig person turned out to be a man, but he was brilliant - very knowledgeable, down to earth and clearly very used to dealing with people struggling with the emotion of it all. He suggested some potential styles and also gave me some advice on hair condition as the lanreotide also seems to be making my hair exceptionally dry. He told me to stop shampooing it, but just rinse and condition as necessary. This has turned out to be good advice and I can report I haven't shampooed for almost 2 weeks now, and my hair looks absolutely fine - I told some friends last night and they gasped in shock!

Anyway, still hoping things may eventually settle down...but steadying myself in case they don't.
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Re: Lanreotide hair loss? help!

Postby plum » Thu Oct 24, 2013 7:48 pm

what an excellent idea to go to a department store where there is someone who can advise etc. i just stuck to the local shops where the aim was to sell me a wig/extension/hairpiece regardless of why/ suitability etc.....

thanks for the tips re not shampooing .... my hair has also gone v dry, especially at the sides .....

i also use AMLA hair oil - available from indian / turkish grocery shops. smells a bit potent but i was advised to rub it in to hair and scalp ideally overnight but at least about an hour pre-washing. so it does take some pre-planning..... hence i don't use it every time i wash my hair. but once my hair is dry (it now dries naturally very quickly, without a hairdyer) i use vitapointe dry conditioner. which i have only found in smaller chemists or superlarge superdrug.....

hopethat you are at least feeling some benefit from being on the lanreotide?

take care

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Re: Lanreotide hair loss? help!

Postby member_38167 » Fri Oct 25, 2013 5:51 pm

I think Selfridges is really out of my league when it comes to wigs given the cost, but the advice was good and I'm going back there this week for a haircut to a style he thinks would suit me better, cut out the dry stuff and potentially move me closer to the kind of wig I might go for. The lanreotide is doing something, but has not normalised the growth hormone, so I'm pending a decision from the hospital as to whether they will do gamma knife - I hope so; I would prefer that to normal radiotherapy.

How are thing with you now?
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Re: Lanreotide hair loss? help!

Postby plum » Sat Oct 26, 2013 8:54 pm

hi

i'm still having my ups and downs as far as fatigue etc. but far better than i was pre-diagnosis in terms of stamina / pain /mobility etc etc.
my hair is getting shorter as i carefully trim off the split ends and it doesn't grow inbetween to catch up... ha ha.

meanwhile good luck with the radiotherapy. it doesn't hurt. and they've probably already told you that you'll have to be patient as far as noticing positive effects. there are other 'threads' here about radiotherapy. i had cyberknife almost 2 years ago and ... er ... i suppose we can say that the tumour doesn't seem to have grown. (neither has it shrunk. grrrr) and my levels still are not 'controlled', so the tumour is clearly still active and merrily pumping away. i'd better stop here or i'll start writing unmentionable things about what i think about it!

all the best

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Re: Lanreotide hair loss? help!

Postby member_38167 » Thu Feb 06, 2014 5:37 pm

Just thought I'd give an update in case this affects anybody else in the future.

The good news is that although the loss I think is continuing, it has definitely lessened in the last couple of months (ie. about a year since it started). The increase in dosage to 120 in fact didn't seem to have any impact. I got my hair cut a bit shorter about four months ago and I think that helped psychologically, if nothing else because it made the actual volume of hair falling less. It was also the first proper haircut I'd dared to have after the loss started (eek!), and it was a relief to see that in fact my hair didn't actually all fall out during the process as I feared it might!

I did end up going to Selfridges wig department (where I in fact had it cut) to try to prepare myself for a wig as a potential possibility. Although so far that has not been necessary, i would definitely recommend them as they were very kind, knew what they were talking about, and kept tissues in the consulting room because 'everyone cries when they come in here' :) Bless them!
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Re: Lanreotide hair loss? help!

Postby plum » Fri May 01, 2015 9:03 am

hi all.
not sure if this is my imagination or wishful thinking.....
and i hope that i am not tempting fate here ......
but....i think that my hair might be growing back. it seems to be getting a bit thicker.
this has been going on for past few months but i didn't want to say anything incase it stops again.
am still on max dose of lanreotide.
anyone else have something similar?
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ps am also no longer on omeprazole, in case that is of relevance..
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