Chemo curl girls?
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Sassa
So great to hear you are 11 years post chemo!! Awesome 😎
Interesting on the changes in color and texture. Love to see photos of you as a calico cat! Hahaha!!
When did you lose the curls?
Thanks for sharing you hair experience...I do love to hear them all!!
🤗
KC
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Trishyla
No wonder the young boys are giving you a shout out! Your photo has you looking about their age. Ha!!
I know I first read between 9 and 12 months you lose the chemo curls. Then I read more like you are saying at 2 years.
I doubt anyone just keeps the chemo curls. But let’s see if anyone checks in and tells us otherwise!!
Thanks for sharing beautiful!!
KC
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You are a sweetheart, CBK! I think you and I could be friends 😁😁
After 11 months of chemo, I feel about 80 most days. But the purple hair makes me smile. So I'll keep it until it doesn't. Hope that's a very long time from now.
Like I said, I'll be 2 years PFC on February 21st and I still have sorta wavy hair with some body. I'll be sad when it's gone.
Trish
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We had same chemo protocol. Ugh. I still feel so tired a year after A/C taxol. But I attribute more to ovary removal/ Arimidex and ongoing reconstruction!!
I try to stay positive with my crazy hair. And love to hear from those living it, but moving on in a positive way on all levels. It’s so helpful!
Right back at you Trish
❤️ KC
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On the original question about chemo curls, here's a photo of the progression of mine. Starting top left and going clockwise, 1 month prior to diagnosis, 4 months after last chemo, 16 months after last chemo, and 24 months after last chemo. Curls need moisture - I use sulfate free product and don't rinse out conditioner! Recommended reading - Curly Girls. Have someone who understands curly hair cut yours. It does need to be trimmed up periodically to stay looking great. Mine are relaxing and I won't be surprised to be reduced to simple waves in a few years but for now, I'm embracing them.
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Funny - I have hair coming in at my temples, too. It seems weird. I don't remember losing hair there recently or noticing a different hairline. But there are definitely "baby hairs" there that seem darker and straighter than the rest.
It's been an adventure for sure. I'd never had short hair in my life! So learning to style a new length and texture is challenging.
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Runrbcb
Beautiful progression and looks sooo healthy.
Moving across top:7 months PFC, 9 months. Moving across bottom: 11 months after my first haircut, and the last photo 13 months PFC.
Thanks for information on book. I only use sulfate free and lots of oils on my hair. Nothing worse than frizzy chemo curls ! Do you use diffuser on your hair or only air dry?
NotveryBrave-
I know having short hair is just not flattering on me, something I never had, as well as these curls . I wonder what those new sprouts are all about?
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Well, Ladies, I have to say I am envious of your thick hair, curls or not. I was 73 when diagnosed in 2017 and at that time had reasonably thick straight hair. I had AC/T which of course made me bald. Hair grew back somewhat curly ( I loved that!) but much thinner than before. I ditched the wig at about 6 months PFC (feel ignorant not to know what those initials stand for???). My curls were all cut off in only a few months. Here is the problem: my hair in the last month has started thinning. I think it may be from the letrozole which I started taking 11 months ago. I am afraid I will have to return to a wig if this shedding does not stop. Its okay on sides and back but patchy now on top. So to me all of the pictures of thick curly hair are beautiiful! Persevere. Polly
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yes, great pics everyone!
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cbk- love the great color. I stopped using a hair dryer 10-15 years ago. Haha.
Polly413- sorry to read about your thinning hair. I think there are some other threads on the board about thinning hair that have some suggestions. Have you discussed with your oncologist?
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Runcrb you give me hope that maybe I could grow my curls out. I get a lot of compliments on my super short hair and was planning on keeping it short until the curls start to fade but sometimes I just look in the mirror and get tired of looking like a boy.
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Polly
PFC is post final chemo!!’🤣.
I’m sorry to hear about your thinning. So discouraging considering you had a lovely thick head of hair prior to this. I feel like those on Letrozole complain a lot of hair thinning. I remember my oncologist gave me option to switch to it, and I said “no thanks I’ll suffer on Arimidex a bit longer”. Because I was scared of thinning hair. Not that your hair can’t thin on Arimidex! Hoo boy!
I supplement heavily. biotin, B complex, amla, calcium and D3. That reminds me, when I had low D level my hair really thinned. Important to have that checked regularly for many reasons but hair!
Polly good luck, let us know how you fare!!
KC
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I never had pretty chemo curls - mine was tight, frizzy, & no product could change it. Time was my friend
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Mollyboo
How long until you lost the curls?
It’s been a long time for you. Which is fantastic to see you here weighing in!
☮️ KC
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Runrcb and CBK - Thanks for your responses. I have this morning set up an appt with my MO to meet Friday to discuss this. I think part of the issue for me is that hormone therapy is harder the older you are. The drug insert says this and my hair and bones say this. Of course the more important issue is bone health. If my hair is this bad, what is going on with my bones? So I am going to press for a Dexa scan (MO normally goes 2 years but I want a 1 year one even if I have to pay for it myself.) I will also ask if he will order a vitamin "D" test. Also will ask about iron levels. What I am struggling with is that all the online bc calculators show that the benefit to me of AIs is a mere 1%. I have never had what some on this forum have had: a discussion on what current guidelines say is my statistical risk reduction from the treatment I have had and am having currently. So hope I can get some information. Just cannot see going bald and having bone issues for a 1% risk reduction. Maybe I will change my mind if my bones are holding up. Polly
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Polly - thanks for the update. I agree 100% - you need to weigh the risks and the benefits. I'm 57 and due to exercise, had pretty good bones to start with. I did a baseline dexa and I continue to exercise. I stopped my calcium supplement at my MO's direction as I was way above normal but she did want me to continue a vitamin D. Have an honest conversation with your MO. Hopefully he or she is open to your concerns,
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Runrcrb - My Dexa scan a year ago showed normal bones for someone younger -- maybe 30 years old -- except for lower back which was normal for my age. My calcium levels are checked every time I go to the MO and they are high normal. Don't know about D. Some people do not lose bone on hormone therapy but you can see why I am worried when my hair is being damaged so much more than others. Will get some answers Friday. Polly
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Wow Polly
You had a very recent good Dexa scan so hoping bones are staying healthy. I don’t think Als are necessarily is harder on older patients than those that are a bit younger. I’ve had a terrible time adjusting to it. Have terrible joint aches and wonder what more I should be doing proactively.
Runrbc and Polly does your MO test your calcium level each time you go for follow up? I’ve never had this done. Please let me know!
Good luck Polly I hope you get some answers on the hair! Let us know!!
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CBK - no. My oncologist does look at labs in my chart. My PCP uses the same electronic record system and she does annual blood work. The calcium level shows up in the metabolic panel and my oncologist noticed it was higher than not range. I asked if it were a problem and i forgot most of what she said but do remember constipation is a side effect. Since dropping the cal supplement I’ve noticed a change in that department. I eat yogurt and dark greens daily so get plenty of calcium through my diet.
If I didn’t have blood work done annually by my pcp my oncologist would order it. But not every 6 months which is how often i see her now.
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Thanks Runrbc-
Great information. Did you switch from Arimidex to Aromosin?
I guess that’s for another thread. Ha! Interested why and result. You can always DM me too!
Best!!
KC
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CBK - Yes, my MO orders a full metabolic panel every time I see him which was every 3 months at first and is now every 6 months -- and that has calcium level on it. During Chemo I had CBC's (blood panel) every week and a full met panel every 2 weeks. I was glad because it measured what the chemo is doing to your liver. ( It will now help monitor my liver for mets). I did have problems with blood levels during AC chemo (even though I did the Neulasta injections) and that is probably why I had CBC's every week. MO also does tumor marker test each time even though that is controversial if you do not have mets but I am glad he does it for whatever good it does. What I want now is a test of vit. D and maybe ferritin to see if those levels may be affecting my hair. Don't know for sure but my understanding is that a calcium level above the normal range is bad for your heart. Polly
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Polly
I want to mention something you may want to run by your Dr. I have a friend who was experiencing hair loss on Aromasin. She was told to take Biotin in conjunction with B12 and B6 plus folic acid for efficiency. I do take Biotin with both B's and I've never had hair so thick. I'm going to look into adding the folic acid for added insurance. I believe all of these are water soluble, so should not be problem with oversupplementation.
But of course, as always, make sure with the necessary physicians this is a prudent course of action.
Thanks for information on bloodwork. I do get full CBC and metabolic panel with MO checkup, but I don't recall calcium on that panel. I'm going to look that up. Thanks Polly.
Let us know what you find out! Best of luck.
KC
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CBK
Thank you for your advice. Alas I have been taking 5000mg of biotin every day for over a year as well as B12 with folic acid. So I really don't think that a lack of B vitamins is my problem. Met with MO today to discuss this. I will have my D levels checked at my regular appt in May. We agreed I will take a month to 6 week "vacation" from letrozole and see if my hair stabilizes. If it doesn't we'll know its not the med. If it does stabilize, I will switch to Arimidex and see how it goes.
I am at peace about it because we also discussed more fully that the basal property of my tumor probably means that even though I am 95% estrogen positive, no aromatase inhibitor will have any positive effect for me with respect to lowering my risk of recurrence. In other words I am like someone with TNBC in that chemo is the only treatment that has a chance to help. People like me with basal like bc (BLBC) have some expression or over expression of an element that blocks aromatase inhibitors. Its complicated but maybe my explanation is close enough. Going to have a Dexa scan and if my bones have deteriorated in the last year then I may stop taking any med. Polly
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My previous post raises the question of why as a BLBC patient I am taking letrozole to start with. This is because some of the studies about BLBC apparently dealt with Stage IV and I am Stage II. So the thinking was maybe, just maybe, letrozole would have some protective property for me and I might as well throw the kitchen sink at my cancer. Not much is known about my kind of cancer. If my understanding is correct about 15% of ductal cancer is TNBC and of that 15% about 25% are BLBC with estrogen positive -- i.e., less than 4%. So bottom line: might as well take it and hope for the best. Polly
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Oh wow Polly-
Well I’m glad you received some clarity of where you are going and what you are dealing with. I’m glad you are getting a break to see what it brings considering the circumstances.
Nobody has mentioned much to me about specifics of my extremely high er+ markers. I was basically told if I go off an al. it would be an extremely bad thing for me and I just took for granted.
Nothing scientific but my observation is that Letrozole patients that I know do seem to complain more about hair loss than other Al users. I don’t know why one would reek more damage on the hair than another. After all they are all making us drop estrogen so they would seem to be equal in attacking our locks.
Hope your scans come back positive.
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CBK - To clarify, I am having a bone density scan, not a bone scan for mets. Positive for me will be that density has not suffered in the last year due to the letrozole. Perhaps that is what you meant all the time. Interesting that you bring up the question whether letrozole is worse for hair than Arimidex. Posters on this forum -- well, some of them -- believe that letrozole is worse for hair and Arimidex is worse for neuropathy so I asked my MO today about it. He says that his patients who have changed report no difference in side effects. I am skeptical of this. I tend to believe the posters because I know I don't talk about all my side effects and suspect many women do not either so doctors don't know how we are affected.
But I did ask the specific question whether letrozole was "stronger" than Arimidex based on the fact that MOs use letrozole for Stage IV patients. What he said makes sense: no there is no difference in strength. The reason letrozole is used for Stage IV is because companion drugs like Ibrance were tested with letrozole (drug co. had to limit to one AI to keep variables limited for research purposes) and perhaps that drug co. manufactured letrozole as well as the companion drug being tested. So MOs used what the testers had used. Makes sense to me. I will report back after my letrozole "vacation" and report whether my hair stabilized. Keep a good thought of me. Polly
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Yes Polly
I understand just a Dexa. So helpful when you can post below your Dx and treatments.
We all get there in our own time, as long as we are seekers!! Right?
Great moving forward!
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