Asoon as I started on hu my hair went a lot finer and receded a little, when I started with Peg I saw the hair noticeably come out.
I’m female So to have a receding hairline of more than inch is upsetting.
It’s concerned and upset me for months.
Minioxidil hasn’t improved my hair line.
I contacted a hair transplant clinic. They said that because of my age and medication I’d only have a 50% chance of success but I could have it done.
Further research led me to another and I feel better clinic. My zoom meeting suggested I might not be a suitable candidate.
I was elated when I received an email saying yes and I needed to have a face to face consultation. I’ve paid my deposit. (Refundable if my in clinic appointment deems me unsuitable.)
Now I’m devastated - I’ve had an email the surgeon says my medical condition makes me unsuitable.
They have offered a Finasteride prescription which my clinic have endorsed.
Has anyone had a hair transplant whilst being an MPN patient? If so did it work?
I’m clutching at straws.
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Mine started coming out on HU but once on peg on low dose it grew back . I was thinking of what I would do but now has come back normal & the bald areas grew back . Hoping you get a solution . 👍 Julia
45 monthly. I was on 45 weekly when hair falling & felt awful. Now feel fit again & hair growing fine. It was as though my body went into shock on HU & frequency of peg doses.
I remember hair dropping off all cats dogs after the big Christchurch earthquake in N Zealand from shock . I was travelling around there just after it happened.
I felt my hair started to fall out in similar shock reaction as I was so shocked at my diagnosis. 👍
Hi I’m worried about hair loss after just 18 months on Hydroxycarbemide. I was thinking that a change to interferon might be the answer. Did Prof Harrison advise that the low dose on a monthly basis would help your hair and how long did it take? I’m really hoping for a solution. Thank you Irene
I asked for Interferon as HU was making me very ill . After a couple of months my hair loss areas started to regrow & now returning slowly to normal however I did not allow Hydroxy to continue past 8 weeks as I was going rapidly downhill on it. Interferon is excellent if low dose & monthly for me . Julia 👌
Suggest you review this question about a hair transplant with a MPN Specialist. I am not aware of any reason why being a MPN patient would make you unsuitable for a hair transplant.
It appears that the HU-induced alopecia that has only partially resolved now that you have discontinued. While some people experience resolution of the alopecia, others have reported long-term changes in their hair. In rereading your post I am not clear whether on PEG the hair came back in or continued to fall out.
You will find mixed reviews on the use of finasteride for women who experience alopecia due to chemotherapy. Finasteride is prescribed for male pattern baldness but may help some women with hair loss. goodrx.com/finasteride/fina.... However, note the following "The data are insufficient to support use of finasteride for the treatment or prevention or treatment of alopecia in patients receiving chemotherapy, or in women with breast cancer and endocrine therapy-associated alopecia." uptodate.com/contents/alope....
I know very little about this situation. I do not know what to suggest other than to do some of your own research to understand what the options might be. Perhaps start here. google.com/search?q=chemoth...
Once you have some of your own ideas in mind, suggest going back to your MPN care team where they should have expertise in how to address the long-term adverse effects associated with MPN treatment. If nothing else is working, I would think a hair transplant is a very reasonable thing to consider. We certainly have other surgeries when taking HU or PEG. Perhaps the hair transplant team would reconsider after consultation with your MPN care team.
I am sure you are not the only one in this situation. Please let us know how you get on and what you learn. Everyone can benefit from your experience and knowledge.
Since you've been on IFN for ~two years the go away part likely does not apply. Other reports indicate the hair loss usually improves upon discontinuation of IFN. Implication is a hair transplant would not hold if still taking IFN (maybe there is a study somewhere on this)
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Rux is a good choice for avoiding hair loss, i may even have some improvements with it. But I don't think it's in common use for CALR ET. Possibly a PEG/Rux combo would help, but it's still likely not easy to get this Rx.
Thanks for replying, yes, think that’s why they have rejected me. My mum’s hair thinned majorly. That’s another reason I wanted it doing. Not only hair loss due to medication but genetic too.
hi, I can’t answer your question regarding transplant, but I completely relate to the hair loss upset. My hair, particularly on the forehead hairline , has thinned significantly whilst on PEG. I’ve been on various doses and it does seem to make that much of a difference. I haven’t tried any ‘remedies’, so can’t say if anything works for me or not. Just to say it suck’s doesn’t it!
Thanks for replying. Yes it does suck! When on hu I noticed it went dinner. I had fine hair befor ET. My hair line has receded at least 1 and 1/2 inches. I’m going to give this drug a go.
I have no solutions to offer but completely empathise. I am on HU and have lost a lot of hair. Mine is on the top and towards the back. My hair is really thin (small numbers of hair to each area) and each strand is thin and fragile. This combination means you can look right through to bald patches. I started tying it up on top of my head, which worked for a while. But now it is going around the sides so that doesn't work. I then went for wide hair bands, but they no longer cover all the bald patches. I am now relying on wearing hats wherever I go, but that tends to look weird indoors and I feel I am attracting even more attention. And they are horribly hot. Infact with my hat and full FFP3 mask I look like some strange version of the invisible woman and I get a lot of stares which is the opposite of what I was aiming for! It's horrid and so I can appreciate how you feel. I am only in my mid 50's and feel quite stressed and embarrassed leaving the house. Medically it is considered a minor inconvenience and I understand that but it does have a huge impact on how you feel about yourself and a big knock to your confidence.
I have just started using rosemary oil as along with shedding my scalp is very dry. I, fortunately started with a lot of hair. I would think I have lost half. I hate it. Whereabouts are your lovely health team?
Thanks for replying. Did you use neat Rosemary oil? I’ve bought some I’ve been told to mix it with something like argon oil. When my scalp started itching I dabbed argon oil on I found it soothing.
Hi. Thank you. Yes I have been using rosemary oil for a few weeks. Too early to tell if it will help growth but my hair is definitely less frizzy so feels a little nicer. I haven't tried Biotin, I'm always a bit worried about taking suppliments but I do have a diet with a good amount of Biotin in them. I fear there probablyisn't a solution - not for now anyway. But I do think it would be better if this was acknowledged medically with a more sensitive approach because it does have a big affect on wellbeing. Good luck, lets keep our fingers crossed for rosemary oil!
I have huge ferritin levels. 800 + recently it’s dropped to 500+ thank goodness. They can’t find a reason. For that reason I can’t take iron tablets ( I’m aneamic.
Yes I’ve had a few blood tests and I’m under an MPN specialist. It was double the high end of range before I had covid 2 yrs ago. Then it went as high as 800+.
Apparently that’s what covid does to your ferritin counts.
Last test it was below 600 so hoping it dropped at my next appointment in September. Thank you for replying.
Yes. Very disheartening. I'm on Peg 90 mcg weekly and noticed thinning. With a good multivitamin with Biotin in it, my hairline has regrown. But although I'm happy with the regrowth, my hair will never be the same as it was....
It’s easy for me to say this but I think you should not rush in to anything until you are sure.
Peg can affect hair and so can HU , I don’t think you said how long you were on/off each?
Hair can take a while to fall out and grow back, hence is it the HU or Peg or something else. Re something else , it could be thyroid or other nutrients,you could check all that first with a doc or trichologist. Some on Peg have benefited from Biotin, you can check for deficiencies.They do treat certain types of alopecia with Rux , it maybe worth checking that out. Re hair transplant, be very careful who you chose , most of them are not very good. If you go that route try to find the best not just the ones who say yes, often the best ones will say no because it’s the best thing for you, often the not so good ones will say yes because it’s good for their wallet not your hair. Hair transplant is a very tricky area, remember if your hair is thinning or falling out because of meds the transplanted hair may do same. Hence try to define the cause first. I would go slowly until you are certain of what you are doing. That may sound negative but remember your goal is to improve your hair not make it worse.
Thank you, I really wished we had somewhere to trust and go to. I totally agree with you regarding nutrients. I take a multi vitamin, biotin and minioxidil.
I would dearly pay if I could get a precise reason. At least I could then stop fretting and wasting money on various products.
After watching the hair loss show on you tube I stopped buying special expensive shampoos. I’m actually thinking my hair has decreased more so maybe I’ll go back to it. Who knows what works ?🤷🏽♂️
I'm sorry to hear this. I can't offer any thoughts about treatment for hair loss, but it's possible that a good hairdresser could do a lot to disguise a receding hairline.
Of course I lost my hair during my SCT treatment and I was very aware that I looked like the cancer patient I was. I wore stretchy hats because I hated displaying it, so I really understand your feelings. My hair has now grown back grey and fluffy, like someone has emptied a hoover on my head! So I still wear hats!
you’ve had a big ordeal to contend with so why am I feeling sorry for myself??? . I have a fantastic hair dresser but once the wind blows you see my hair loss.
I do hope your SCT continues to improve. Thanks for your reply
I agree with Hunter. Not sure why they wouldn’t do it. Shouldn’t be contraindicated, but maybe they don’t have good success on people that take our types of medications. But I help women after intense chemotherapy all the time. There is a red light cap that can help, maybe a little pricey. You can talk to your doctor about oral minoxidil, not sure if you could take it. PRP is another great thing too, not covered by insurance but can help. See your dermatologist. We do a lot with hair loss. Hair growth is painfully slow! I tell my patients whatever we do give it minimal of 6 mos before you see any improvement. And there are other dermatologists that are very aggressive with hair loss and some that are not. So make sure you try and screen them before you go. I suggest someone very cosmetically inclined and a woman if possible. Because I will not lie hair loss is difficult and some may not want to spend the time it needs on this issue. Hope this helps!
Thank you, my heamo team have agreed I can take minioxidil orally but this clinic who have rejected me have offered Finasteride which I’m going to try. My heamo team have also agreed I can try this. There are two types of hair transplants. FUE and FUT. I’m going to explore the FUE one now lol.
So sorry for your experience with loss of hair. I totally know where you are coming from. My experience is very similar to yours. I am still battling with my hair loss and using all sort of supplements to support my hair. I am very sad about it but I also know that as long I am on Peg not much I can do. First I was on Hu for two and half year and then on Peg for eight years different dozes. Now I am on very low 45mcg every four weeks. Still losing my hair!
I will be 70 this year and diagnosed with triple negative ET 18 years ago. I’ve been on HU most of that time with a 2 year unsuccessful Anagrelide trial about 5 years ago. I am a blue eyed blonde and had very long thick hair which gradually thinned and changed texture and became very fine and frizzy. It is hard to accept when your attractiveness changes but I’m still here which is the main thing. After numerous skin cancers my specialist finally switched me to peg. This was after I had squamous cell skin cancer on the top of my head that required a 2” in diameter skin transplant which was taken from my collarbone area. I have cut my hair to chin length and the loss seems to have slowed on peg. The graft will never grow hair so I wear a baseball cap around the house (not that weird because I am quite athletic) and I invested in a very good blonde shortish wig. I get so many compliments on my hair now and no one knows it’s a wig except my close friends. Others tell me I should have cut my hair years ago because I look so much younger! I still feel attractive in my wig and my husband is fine with my thin hair with the bald spot at home. Yes the wig is hot but I only wear it when I go out and it’s worth it to look great. I have a large array of hats that I wear when doing yard work, running to the store, around the house etc. Hair loss is not the end of the world. I am just hoping now that the peg will soon kick in and control my platelets.
My Primary Care Physician is a woman, and she suggested I try it after she had heard about my hair loss problem from HU. Hematologist is aware of it, and OK with it. The regular dose is 5 mg. but after doing research on my own, it seemed that 2.5 mg. was most effective to counter hair loss in women, so I cut the pills in half. I have no side effects from it. It is usually used for old guys and their prostate issues. My husband took it for that, but it didn't seem to do anything for him. I couldn't really say how long it took to work. It has definitely slowed the hair loss, so I keep taking it. It is not a miracle solution, but since it causes me no side effects, and has slowed the hair loss, it is worth it to me.
the 5mg dose is sometimes prescribed for "old guys with prostate issues" as you refer to them/us as. The typical dose for male hair loss is 0.5mg to 1mg or even less.
My husband is and "old guy" with typical age related enlarged prostate issues. He was prescribed Finasteride for that, not hair loss...he's bald. No offense intended.
Personally I would research Finesteride carefully, I researched it a lot for males and some report irreversible side effects including psychological. There are various websites on Propecia syndrome , Propecia is a brand name of Finesteride. Plenty info on Google.
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