Can my wife keep her hair?

June 10, 2023 4:12 AM

My wife is starting chemo in a couple of weeks. She purchased the Dignicap scalp cooling system in hopes of keeping at least some of her hair, but she's now read a few things online indicating that it's not particularly effective with the chemo drugs she'll be taking.

She'll start with 4 treatments of dd-AC (dose dense Doxorubicin and Cyclophosphamide), and then switch to Taxol for 4 treatments. Has anybody had experience with the Dignicap and this regimen? She's worried it's not worth the time and the extra 4 hours she'll have to spend at the infusion center. Her doctors don't know much about Dignicap (it's still a relatively new technology).

posted by grumblebee to Health & Fitness (12 answers total)

I'm very sorry your wife is going through this, and I wish her an easy time of it, if at all possible. I fully respect her desire to keep her hair, even though I'm going to advocate against using a cold cap system.

I haven't had cancer, but two people close to me have. I know that they both used Taxol as part of the treatment, but I don't know/remember the specifics and other drugs.

My sibling had breast cancer, did not want to lose her hair, and tried a cold cap method. Eventually she ended up losing enough hair that seemingly overnight the loose pieces tangled into an unbrushable mat with the remaining attached hair, requiring her to completely shave her head, which was psychologically devastating. She then went all in on wigs, including the "halo" type that you wear under a hat. Her treatment was pretty straightforward and followed the "normal" course. When it concluded, her hair regrew.

My best friend had ovarian cancer, was **extremely** concerned about losing her hair, and was working in an industry where personal appearance is extremely important. Her doc told her that the way cold caps work is by inhibiting the cancer drugs' ability to invade that area, and thus using one might be inhibiting the cancer treatment itself in some manner. She declined to use a cold cap, and instead waited to see what would happen. She did start losing her hair, decided to shave it, and purchased a couple of incredibly expensive wigs that were freaking gorgeous and as close to undetectable as a wig can be. Her cancer treatment was not straightforward, it continued for 5.5 years without remission, and a wide variety of drug regimens were used. There were times when her hair grew back, and times when she lost it again. And then she died.

With my friend, in particular, I was with her at literally every step of the way, during 5.5 years of full-time cancer treatment. And yes, it basically turned into a full-time job. If you had asked her then if she wanted to spend a minute longer than necessary in a doctor's office or chemo treatment suite or hospital bed, she would have said hell no. If I could change anything about it (other than her living, or not having cancer in the fucking first place), it would be to remove her concern about her hair. Her life was on the line; the hair was the least of it. Because of this experience, I know that if I were to face such a challenge, I would not spend one minute worrying about my hair.

Fuck cancer.
posted by BlahLaLa at 7:23 AM on June 10, 2023 [41 favorites]

Response by poster: I'm very sorry to hear about your friend, BlahLaLa. Thank you for all of that info.
posted by grumblebee at 8:11 AM on June 10, 2023 [1 favorite]

Is she on an online support group for her kind of cancer? I'm a broken record on this, but having access to the experience of a lot of people with my specific kind of cancer taking the same drugs I am has been a huge help to me. If she hasn't already, I would expect this to be a way to hear from people who have tried it using this regimen.

My support group is on Smart Patients, which has communities for many different conditions. I'm sure there are others.

Best wishes to you and your wife.
posted by FencingGal at 8:19 AM on June 10, 2023 [11 favorites]

I cannot say for your case but my mother has just started to lose her hair due to Taxol and I spent many hours today looking for quality wigs to gift her.

I have settled for a mix of wigs and scarves, which I will bundle and then gift her. I am using www.wigoutlet.com and Etsy.

I will encourage her to consider this, as a time to playfully experiment with her looks. I think that's the sentiment with this video as well: https://www.youtube.com/watch?v=AvEyybe-PZw

There are many ordinary women (old and young) who *choose* to forego their hair and change up their looks with wigs, or look gorgeous bald. It's all a matter of framing.

We have been blessed with her going through this with immense strength - she can work, swim, walk for many hours every day besides her having advanced, metastatic cancer. Some days are harder, some are easier but it gives her security to know she has been through many bad days and pushed through.

I pray God gives strength to your wife - we have been blessed with the gift of choice to understand what life is all about. Let's try to cherish it.
posted by panosf at 8:23 AM on June 10, 2023 [2 favorites]

As a small sidenote: My mother's doctors advised against Dignicap due to the reason's BlahLaLa mentioned.
posted by panosf at 8:33 AM on June 10, 2023 [2 favorites]

I would recommend reading as much of the giant thread about cold-capping on breastcancer.org as you can.

I didn't cold-cap, myself, but I'm lazy about what I look like in general. Still, there were many days I wished I had. (I had chemo in 2015.) Hair loss can be its own trauma in the cancer experience, which is itself a series of large and small awfulnesses. I hope they're mostly small for you. Good luck to you and your wife.
posted by purpleclover at 9:34 AM on June 10, 2023 [1 favorite]

I would also recommend searching the subreddit for her type of cancer. There are many discussions on cold capping on r/breastcancer and that chemo regimen is fairly common.
posted by Kris10_b at 10:18 AM on June 10, 2023 [1 favorite]

Hi, I’m a medical oncologist, obviously not your partner’s. I don’t usually find much success with cold capping for the AC portion of this regimen, but is more helpful with Taxol. Even when successful, most patients still lose a good fraction of hair.

If minimizing total duration of hair loss from chemo is important to my patients, I will usually offer to have them receive their Taxol up front, and then complete AC after completion. I’m not aware of any data that says this doesn’t work as well as the AC followed by Taxol. The only drawback may be Taxol neuropathy which is usually well-managed with ice packs to hands and feet during infusion.

Most of my patients, after consideration of the time, expense, and possible risk, ultimately opt not to cold cap. I would strongly suggest cold packs to hands and feet because neuropathy is a lifelong, potentially devastating side effect if she gets it… but of course, please discuss with her oncologist. I’m sorry that you and your wife are going through this, and hope fervently that she has a kind and compassionate team to answer her questions as well.
posted by honeybee413 at 2:26 PM on June 10, 2023 [14 favorites]

Some small pieces of relativizing experiential info. I had 10 weeks chemo (ACT) for BC in 2011. Bald as a coot. The hair grows back really quickly. I do recall feeling self conscious but the actual time frame for that, in retrospect, is very short. The longest and most annoying side effects of chemo are still with me today: blocked tear ducts from Taxol (basically on windy days my eyes tear up and instead of draining back inside the tears fall out of my eyes--it's super annoying and i don't even wear makeup), and toenails that went from crumbly to permanently thickened and deformed.
posted by Morpeth at 4:22 AM on June 11, 2023

My dear friend used a cold cap, but still lost most of her hair on Taxol. She kept on a regiment of vitamins that included niacin, I believe, and her hair grew from (as she called it) Golem back in December to an adorable pixie-shag length by early April.

I hope your wife is OK. Cancer sucks.
posted by mibo at 3:10 AM on June 12, 2023

I don't have experience with a cold cap but I will say that 2 weeks after my first AC treatment (early 2015) my hair started to fall out in chunks. It was so annoying that I ended up shaving my head in self-defense. I didn't like it but also, being prepared that it would happen (and the timing - they were right on) made it better.

Also, when they say your hair will fall out they mean -all- your hair. My eyebrows hung on the longest but then they went and I felt like a weird alien for a while until they started to come back once chemo was done. I had a wig and also many many hats for when it was cold and I had no hair. Also scarves! I hadn't realized how cold my neck would be without hair.

That said, I did very much enjoy when my hair was long enough to look like an actual hairstyle rather than sickness and my 'chemo curls' when the hair got a bit longer.

This whole thing sucks - I'm sorry that your wife is going through it at all. I hope everything works out for you.
posted by machine at 9:46 AM on June 12, 2023

My mom used a cool cap during chemo for breast cancer and thinks it did save a portion of her hair -- like 35% maybe. Enough that she could wear a hat and have some wisps of hair sticking out from beneath it, and that was enough for her to feel "normal" while out in public. Psychologically, it was worth it for her. But she did say the discomfort of the cool cap was significant and made chemo all that much worse.
posted by egeanin at 11:00 PM on June 14, 2023