Regrets about chemo after first cycle

ToutVaBien

I didn't think my hair loss 2.5 weeks after the first cycle would have affected me this much. Despite cold capping and following every piece of advice I've read and been given to take care of my hair during chemo, my hair loss is quite a lot already. I'm having regrets about chemo and felt quite pressured with time to get started on it. Has anyone actually stopped their chemo? I'm worried about the possible permanent hair loss with taxotere, which I was well aware of before going into this. However, I was much more optimistic 3 weeks ago. Does anyone have any advice? I don't mean to sound vain or anything, but I'm in a high pressure job with a lot of scrutiny and my hair is so important to me. Wigs - I have one but I can't bear the thought of doing that full time if I have permanent alopecia. I don't know what all the options or success rates are for permanent hair loss. I can't stop crying and I'm putting myself and my husband under a lot of stress. Is it worth it to stop chemo just for hair? I'm 25% done with my treatment but for my mental health's sake, I don't know if it's worth it anymore. I'm so depressed. Please help or share your experiences...

serendipity09

ToutVaBien - I'm so sorry you find yourself here! I know for a fact that I felt the same way about regretting having started treatment when my long, thick, curly beautiful hair fell out. It was actually the worse part of being diagnosed, going through treatments and surgeries. It's not vain to feel this way. I was depressed and sad, I couldn't look at myself in the mirror without a wrap or a wig on. But I had to ask myself what was more important to me. I'm fairly young still, and I have a lot I still want to do in this life. It's easy for me to say this now, a year later and with a head full of hair. Last year I was inconsolable and didn't want to hear it. I wore a wig every time I went out the house, even to walk the dog. I think back at it and feel a bit silly, but at the same time I know I would do exactly the same thing if I had too. I wasn't on taxotere, but I do know many, personal, and from this sight, that their hair grew back, I actually don't know anyone that has had permanent hair loss after being on it.

You're 25% done! I'm rooting for you!

Praying that it gets better for you! Know you are not alone and you've come to the right place. {Hugs}

Spookiesmom

Different perspective here. I just spent the last year watching my DH go downhill. He had bone mets. He refused all treatment. He died 6 months ago. With a full head of hair.

My hair is thin, but I have some. I prefer living with thin hair.

But you do you. Maybe see a therapist for this.

ThreeTree

I never tried cold capping, because I'd read it didn't work. I didn't want to shell out the money for a wig for just a few months, even though like you, it was absolutely devastating and probably the worst part of treatment, to lose my hair. I just did the hats and scarves and felt embarrassed all the time. I did AC+T. After the first couple of AC's my hair began to fall out real badly, much like you are describing. I was in tears and devastated. I went up to a local salon and had my head shaved. I cried and cried while the lady shaved my head, and she cried too, but kept saying how it would grow back, so not to worry (she had had a friend who went through this). I continued to cry and cry over it for a long time.

Anyway, my hair has come back thinner, but it's fine. There are no big bald patches or "open spaces" where my scalp can be seen or anything like that. It's just not as thick as it was, but it is still probably more than many have naturally. It's my legs and underarms where I notice that all of the hair never grew back. It's patchy in those places and I don't really care. It's been about 25 months since I finished chemo.

I totally understand how you are feeling, it is absolutely the worst to see your hair go. I also agree with Spookiesmom. Consider what you would be risking if you stopped. My two cents would be go for it and continue. As awful as this is now it will get better, even though saying/knowing that now doesn't bring much immediate comfort.

hapa

I cold capped through six Taxotere treatments even though my hair fell out after the first one. The hair on my head came back as thick and lush as ever, but my brows, lashes, and all my body hair is sparse. Keep cold capping. My $0.02.

Also start taking biotin when you’re done with chemo. It will help your hair grow faster.

I lost so much sleep during chem worrying about my hair not growing back, and I work in a profession where people couldn’t care less about how you look at work. It’s not “just hair” IMO.

AMG2

ToutVaBien, I am so sorry that tout actually va pas bien. Big virtual hugs to you. Losing your hair is traumatic, there is no way around it. If mine comes out, it will be absolutely traumatic for me, too. I am cold capping, am on day 20, and so far have only had some shedding, but I am on a much easier-on-the-hair protocol than you - taxol + herceptin. I also know I've done some things wrong, and I'm probably going to end up with either a very thin crown or some hair that looks like male pattern baldness, and it's going to absolutely suck.

As for wanting to stop chemo - even with my much easier protocol, I have infusions on Wednesdays, and on Saturdays, when the steroids start to wear off, my heart rate shoots up to 90-130 even lying down, and stays there until Tuesdays (so far), gives me bad chest pain and makes me extremely short of breath. It's utterly exhausting, and usually by Sunday morning, I'm ready to call it quits. Then I look at my 3 kids, and by Sun evening, I'm ready to go get poisoned again on Wed.

There are a couple of things, besides my kids, that I try to remind myself of when I'm down and want to give it up, and I hope this may help you:

1) It's 12 days of my life, and 12 weeks of my life. I've been alive 2,963 weeks so far. This is horrible, but I can do it. I spent 22 weeks on bed rest with one of my pregnancies, and I survived it. It will take several weeks to recover from this, but I can do it. I've got 9 more times to go through this.

2) Oncologists are not in the business of letting people die of chemo. Mine will keep an eye on this, and will get me through this somehow (I'm seeing him tomorrow).

3) I had a relative who was recommended chemo, decided against it, and died of metastatic breast cancer (bone, brain, lungs, liver). She should still be alive today. She regretted not doing the chemo, and I really wish she had done the chemo. She was a lovely person, and I still miss her, and I don't want to be in the position of wishing I had done the chemo. I know that if this comes back, and I didn't do it, I will not forgive myself.

4) If my hair comes out, in addition to the other side effects, it will grow back (easy for me to say with hair still on my head, I know full well).

Back to the hair loss despite cold capping: I've had a few looks at the cold capping threads, and based on the experiences of others there, it seems it will come back faster if you keep up the capping, despite the current loss, and may even start to come back while you're undergoing chemo.

Again, I am so sorry for what you're suffering. I still have my hair so far, and it all seems like too much even for me sometimes. Try to hang in there, and please keep us posted, whatever you ultimately decide. We are here for you any time you need.

Carlsoda

I am on the other side of chemo - finished the same protocol as you 6 weeks ago. It was hard and I got though it….just like you will!!I just focused on all those little cancer cells being killed. Most of my hair is gone BUT I see it coming back! Just remember next time you go in you’ll be half done! It does go fast luckily! Sending you hugs!

YesIamaDragon

I also had long curly hair pre-chemo. I was trying so hard to keep my diagnosis in wraps at work and I couldn’t find any wigs that looked anything like my natural hair. I settled on a cheap on and off Ben my boss, who has known me for years and did know I was undergoing chemo initially thought I had gotten my hair cut, straightened and highlighted! And that was sitting right next to me! I had TCHP.

The whole experience taught me that Mom was right— others aren’t paying nearly as much attention to me as I would think! My hair has grown back — much straighter than it had been, but I am kinda rocking the short hair, and have taken advantage to dye it all kinds of funky colors.

Summary: it feels anxiety-provoking at the time, but loads of us have survived and had our hair come back just fine

Krose53

I know this is hard. Before I ever had cancer I would panic thinking what if I ever had to have chemo and lost my hair? Always been my best feature. It was awful when it started falling out but I decided to have a little head shaving party with champagne and chocolate. It was a relief to have the stress of watching it fall out gone. At first people stared but I decided it didn't matter I had more important things to focus on. 3 1/2 years later my hair is super long and thick. I know someday I could have to lose it again but I will deal with it and so will you. Finish your chemo. Time will pass and your hair will grow sending you love and positive thoughts for lots of hair ASAP

Cowgirl13

I had taxotere 12 years ago. All of my hair came back and it was curly for a couple of years. There was no way I wouldn't have done chemo because if I were to have a recurrence I wouldn't have been able to forgive myself. Now I could have a recurrence but it would not be because of not having done chemo.

2019whatayear

it really really sucks and my head ached when my hair fell out. I hated hated the hair loss! However that was my best shot at squashing the cancer. And so you gotta hang in there- it’s gone now might as well do the rest of the chemo- otherwise you may have the deepest regrets.

Around day 4 post A/C treatment I would be super depressed for about 2 days, could this be part of what you are feeling?

ruthbru

My beautician told me to use Nioxin for Chemically Treated Hair during chemo (as your scalp is being chemically treated from the inside out), and then regular Nioxin until my hair was back to where I wanted it to be. It came back beautifully and after an interesting curly period is the same thickness, texture etc. as it was going in. I worked through chemo and (in my own mind) needed to wear a wig throughout. I had a very good wig so no one knew it wasn't my own hair unless I told them. Sincr I figured that I had to be alive to worry about hair, my advice is to just get the chemo over with to give you that best chance, and expect your hair will be fine (because it is for most people).

Anonymous

Look at it this way - if the hair is considerably reduced at this point, finishing the chemo to give you the best possible chance for non-recurrence is sort of a no brainer. The hair will still take as long to grow in as if you just finish the chemo. I understand about being in a high pressure job and wanting to make sure others don't know or can see the difference, but why worry about what others think when its the rest of your life we are talking about here? There are other jobs, there are fabulous high end wigs, there is hair to most likely to grow back, there are not other lives.

Ingerp

All I can add is try to hang in there. I did not cold cap (had also read it works sometimes, not so great others), so I was prepared to be bald for a couple of months. I remember cutting it down to about an inch three weeks in, then buzzing it completely after another week. It was not fun but also kind of "one more thing behind me." Wigs are not my thing, so I did ball caps and bandannas. At about the 12-week PFC mark, I had a work meeting out of town and decided I didn't want to mess with the head coverings, so went out with nothing on my head from that point forward.

I had read on lots of different threads that it takes about two years for your old hair to come back, and that was my timing. I mean I had hair, enough to color and cut, but it wasn't mine. I felt like I was looking at someone else in the mirror. But it *did* come back, just like it was pre-chemo.

KotchAJ

ToutVaBien,

It is extremely traumatic to lose your hair. I'm struggling with it myself. On a daily basis. I feel old and ugly. I told my best friend I felt like Uncle Fester from the Adams Family. I went through 4 bi-weekly AC treatments and started losing my hair about 10 days after the first one. I had spent the year prior going grey from my former dyed brunette hair so was extremely upset when I was diagnosed and was going to lose the hair that I had worked so hard on and used to get tons of compliments on:-(

Hang in there. Keep cold capping. Keep going. It's hard. Real hard. But, you can do this. Don't stop your chemo treatments. You can grow your hair back. You have us. We are going through this together. It's okay to be upset about your hair. It's normal to feel that way. Mine is starting to grow back now. Already and I'm still getting chemo. Just no longer AC. It's Taxol now.

WC3

ToutVaBien:

I cold capped and still lost most of my hair, but it did grow back, and that was my goal. In fact I frequently had new hair growing in as old hair was falling out. I just continue with the taxotere and cold capping but an alternative is to switch to Taxol, which has a lower risk of permanent alopecia but, as another person here pointed out, has a higher incident of neuropathy.

moth

I lost all my hair in 2018 but it grew back.

Now I'm bald again & likely will die bald as I'm on chemo for life. I would absolutely trade my hair for a chance at longevity... & that's the trade you're being asked to make. Odds are your hair loss is temporary but of course worst case scenario can be permanent.

But is that really the worst case scenario?

Let's be clear about this...your chemo isn't about treating the current cancer. It's about lowering the risk of a *fatal* recurrence.

I get that it's hard, but also you can get through it!

But only you can decide if it's "worth" it

wrenn

^{Hair loss was the last thing on my mind when deciding on having my cancer treated. Hair vs. possible death seemed like an easy decision to me.}

^{As it happened I only had one dose and was cut off due to complications but I did lose all of my hair and loved how it grew back curly. 8 years later it is still better than before.}

^{Permanent hair loss isn't that common so you will probably get your hair back. Hopefully the treatment will do as intended and you will be around to enjoy that hair.}

Messenger77

I agree with moth. Life over hair any time, any day