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What cancer patients, their families, and caregivers need to know about COVID-19.

Thin hair

Kazenmax's picture
Kazenmax
Posts: 404
Joined: Feb 2016

My hair thinned quite a lot from chemo. It's a year since I stopped and it's still thin and seems to be getting thinner.

Does anyone else have this problem?

I know it's vanity but it's yet another thing that this cancer has taken from me.

My husband and I are going to celebrate our 25 year anniversary. We wanted to take our first cruise but my WBC just don't improve. My doctor said it was from the radiation. My hip bones have gotten fragile and evidently this effects creating white blood cells.

It's taken away my sex life. It's deformed my body. It's just never ok very.

I'm so disappointed. I know I should be thankful that I'm alive and well 4 years after diagnosis but why did it have to change me so much.

Just needed to vent a little. 

K

Annabelle41415's picture
Annabelle41415
Posts: 6375
Joined: Feb 2009

My hair has always been fine and thin all my life so when doing treatment it did thin but wasn't that noticeable.  I've tried every shampoo there ever was made for giving me more volume and the only thing that did something was mousse and some gel.

You are right, the after effects of treatment is awful. My white count has never gone back up to normal.  I've had two hip replacements because my hips just got ate away from the radiation.  My husband and I can't make love anymore due to the vagina shrinking and thinning out of the vaginal walls.  The list goes on for me as well.  I'm sorry you are going through all of this.

Congratulations on your 25 anniversary, and you should celebrate.  I've been on cruises since diagnosis with my WBC level and never had a problem.  You might want to ask your provider what they think.  Hope you can go though, it is so worth it.

Kim 

Kazenmax's picture
Kazenmax
Posts: 404
Joined: Feb 2016

Thanks, Kim. i think I will ask my oncologist. Last month I had some vaginal repair done. Prior to the surgery my family doctor was reluctant to approve surgery because of my low WBC. But my oncologist said that since it’s chronically low, he approved surgery. That turned out alright.

i have the same problem with my hips. Oh and my knees too. I have not done any surgery yet. 

i thought that once I was done with chemo things would go back to normal. Maybe at 67 this is my new normal. It sucks. And every so often I let it get the best of me. 

Thanks for listening.

k

Trubrit's picture
Trubrit
Posts: 5040
Joined: Jan 2013

I had a good head of hair with just the right amount of wave, before treatment.  Mine fell out to the point that I looked like Gollum from Lord of the Rings, and I shaved it all off, which look 100% better, so you can imagine how bad I looked.

Several months after treatment it grew back back, thick and curly - quite wild looking, and then, damn me if it didn't start falling out again.  While not thin, it is allot thinner and has no wave whatsoever.  

I have to keep it short short, and am still frustrated every time I look in the mirror.  

Personal choice for me, I refuse any kind of hair thickener. I don't even use a blow dryer any more, becasue I just don't want to take the chance of more hair falling out. 

As for my sex life, that had to stop - well the intercourse thing. And my hips are shot, especially my right one.  I have unpredictable bowels, and my liver twinges from the scar tissue, scaring me every single time - which is several times a week. My neuropathy is so bad in the morning (right now) that my finger barely work, and feel as though they have been burned, and my feet feel like cork. 

I have had people suggest that after five years I should just forget about the Cancer, as I am ovbisoulsy 'doing well'. Sometimes I will tell them how 'well' I am doing, in explicit terms; other times I just bite my tongue and let it ride. 

There is nothing wrong with feeling robbed WHILE feeling grateful. 

We ARE doing well. We ARE grateful, but it comes at a price that we live with every single day. While we may look wonderful on the outside, only we know what our minds and bodies are going through. 

I hope you get to take your trip.  Take a box of surgical masks and don't be affraid to wear them.  People stare, but that is their concern. 

Enjoy this life. Heaven knows there is enough Hell on earth around us, we need to pluck the joy out when we find it - sorry, I also have a son in the Army and this situation at the moment plays heavily on my mind. 

Guess I'm having a vent as well. 

Tru

Kazenmax's picture
Kazenmax
Posts: 404
Joined: Feb 2016

Thanks Tru. You are right. The world is a scary place right now. 

Yes I hear it all the time.... you look so good. Everyone else thinks it’s all over but everyday I deal with the after effects. It’s gotten me so depressed that I can hardly get out of bed. I’m letting it get the best of me. 

Im a planner....a doer. Give me a problem and I will work to find a solution. But this one is too hard sometimes. 

Today is a new day and for today, I’m going to think about a cruise. You’re right. I can always wear masks. 

Thanks for listening.

k

Trubrit's picture
Trubrit
Posts: 5040
Joined: Jan 2013

Come up with a plan so that it doesn't get the best of you.

We all have to make it work in our own way, but ideas can help.

When I was at my worst, I just knew I had to do something, mentally, to get through.  So, I told myself that I could have a 10 minute pity party each night when I went to bed - night time was always the worst for me, emotionally.  I would weep and wail, gnash my teeth, ask why, pity myself, and then when the 10 minutes was up, I would move on. I used a guided meditation at that point - saved my sanity, I can tell you. 

Why not allow yourself a day or part of a day, each week, where you stay in bed until whatever time. Lay there and feel sorry, wish things were different, cry, ask why, and then get up and move on.  Just an idea. 

Your life is worth living.  

I have a list of freinds who have passed since I was diagnosed - a long list - and I often either look at that list or think of them. Speak their names out loud, and while I allow myself some time of personal sorrow for what I have lost along the way, I know they want me to get on with living. 

I know you will make it work You're a doer, I can tell. 

Tru

Kazenmax's picture
Kazenmax
Posts: 404
Joined: Feb 2016

Just last night I spoke the names of my dear ones who have passed. The whole time I was in treatment, every night I would say their names out loud. I would try to see their faces in my mind. It helped me to think they would want me to fight.

i think I will look into meditation. 

Thanks

 

SandiaBuddy's picture
SandiaBuddy
Posts: 1009
Joined: Apr 2017

Nicely put, Tru.

Real Tar Heel
Posts: 52
Joined: Nov 2019

My hair actually started thinning out in certain spots before chemo. For me I believe it was the anemia caused by cancer and not the chemo (my doc estimates that I had the tumor for several years), but the chemo definitely is not helping. I can kind of trace it because I've had dreadlocks for years. The longest ones are thin in some places, then just after my first surgery, a brief return to normal before thinning out again.

Recently saw one of those social media posts with some quote of wisdom, like, you are focusing on what you don't have, not what good things you do have (that was an awful paraphrasing of what I'm sure some see as a beautiful and wise thought). I don't know if that thinking is meaningful for us...can't help but focus on the negatives sometimes. It's okay.

Kazenmax's picture
Kazenmax
Posts: 404
Joined: Feb 2016

You are absolutely right. It's just easier some days more than others.

Thanks for the good thoughts.

K

danker
Posts: 1208
Joined: Apr 2012

We all have one side effect or another!  Mine is Diarrhea.  Here I am 10 years out being NED yet I still suffer from Diarrhea more often than I like.  But we all learn to live with whatever side effect we are burdened with.    

As I approach my 88th birthday. I'm happy to still be alive!   Good luck to us all each and every one.

Kazenmax's picture
Kazenmax
Posts: 404
Joined: Feb 2016

Always good to hear from you Danker. You are my hero! 

K

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