Cold Caps Users Past and Present, to Save Hair
Comments
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soccergirl: Ouch! I know of no contraindications due to Tetanus or antibiotics - you should be fine. Mostly, I hope you are recovering quickly from the dog bite!! Watch for infections, wash your hands often and keep the wound clean.
lstreett: I didn't have nausea during the caps, but other women have and often advise a painkiller or Ativan about 1/2 hour before caps go on. I did develop a reaction to the smell of the caps, in the end. I didn't realize it until the first time I took out a demo cap to coach a woman and her helper, and got queasy. Now I am used to the smell and no longer feel queasy, but it reminds me how powerful our senses are, especially smells and memories. I developed a 3-day headache, intense, after the first tx but I think it was a combination of stress, chemo, and (mostly) decaffeinating. I did not have that headache with the other TXs.
Are you getting Emend as one of your premeds? It is a powerful anti-nausea med (and very expensive I'm told, so not all cancer centers use it routinely). You might inquire whether that can be added to your premeds. And, the bigger answer to the bigger question, if you decide to not use the caps, it's okay! It's a choice now, which in itself is wonderful. Everything, really. It's wonderful that this exists and I'm on a mission to help women learn about it, but it's not for everyone. For those of us whose cancer types and chemo types allow us this option, it's great to have the choice, but it is a lot of work -- during the infusion but also the months of babying hair, etc. It might be equally empowering for you to decide to not do it, and when your hair goes, thank it for protecting you, then welcome that new beginning with new hair when it comes in. Maybe some other women will weigh in on how they got through the cold nausea during infusion.
howard: great to hear your voice again!
I had my acupuncture visit today (which was wonderful as always) and am starting on a fairly dense nutritional supplement regime due to my nutriscan results (low middle antioxidant level in my cells). I'll be reading through some PubMed articles tonight to research further, but it centers around the ongoing research involving the microenvironments of cells, esp. cancer cells. She said the supplements will also abate the SEs of tamoxifen (hallelujah!) without the need for other meds. Though I ingest a picture-perfect diet, my metabolism is not taking full advantage of the antioxidants, so the supplements will step in to enhance that and protect my cells. I'll do another nutriscan in 2 months and hope to see improvement.
Last week Hope Rugo, the md leading the PCC clinical study at UCSF, spoke at tumor board about PCCs. My docs (Alta Bates) were in the know :-) My doctor is giving a forum in October and may ask me to speak about PCCs and my experience.
It's a beautiful day out here, I'm going in the sun to enjoy it.
Susan
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I didn't go to the hospital were I am being treated. I went to the closet ER from the place I was hiking. My blood coints came back ok. Thank God I got the white blood cell shot!
A very strange thing happened after I was bit. I was a mile plus from my car and I asked this random female hiker to walk with me back to my car. I was a little hysterical and I told her I was having chemo and she was amazed because she had breast cancer three years earlier. Having hair confuses many people. She then told me she was out hiking today because she was waiting for her Uterine Cancer Biopsy results and was very anxious. She then told me that she was never informed of the Uterine Cancer risks with the drug Tamoxifin.
It is so important to be an informed consumer when it comes to this disease!
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soccergirl-sounds like a crazy day. I've found that the more I tell random people that many of the women are survivors as well. crazy, crazy. And for her to being waiting for new tests results, I fear it myself. But what are your choices? tamoxifen is necessary if you are hormone positive, and especially if you are pre menopausal.
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I know it is necessary. I am hopeful they will have a cure in the next ten years. There was a news story early this month which stated they found a cure/treatment for Leukmia. The treatment didn't involve chemo either and the researchers said they would apply the findings to other cancers including breast. I truly believe there will be a shift in treatment and options. Perhaps the field of Oncology will include a Mind Body Component that will include Eastern Practices as part of the protocol/treatment. Also, the standard of treatment will be much more individualized. I am excited to see what happens and be involved in the journey. We are so much luckier than the women from 5,10,15, and 20 years ago.
I did struggle with the descion to do chemo. I am so happy with my choice and thrilled I discovered the caps.
Diana
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Susan- I'd love to know more about your nutritional supplement regime.
Soccergirl - how frightening to have the dog bite. I cut my finger cooking during chemo and that little cut took two weeks to heal. The advice about keeping your wound clean and knowing it may take longer than usual to heal sounds like good, wise advice.0 -
Istrett- on my 2nd treatment I told the dr. Not to add "ATIVAN" wich is a medication for anxiety, but it helps for nauseas too. On my pre meds (before chemo) I had a lot of nauseas, so I told them to add "ATIVAN" and I finish my treatment without nauseas. Also "EMEND" is very good for nauseas, the nurse had to get an approval from my insurance and I paid $50 each treatment, but I was worth it.
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On infusion days I took Ativan before I left the house for my infusion. I also got more ativan and bendryl in pre meds. I also took a tylenol before I left the house. I never felt nauseated...just tired and had no appetite on chemo day.
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Did any users of Penguin Cold Caps, rent the extra gel straps? I thought I had read somewhere that they were a good idea if you have very thick hair or a big head, which I do. I am not sure how you use them, so any info on this would be great!
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Laura5 - I have a friend using the extra strap now bc she has a big head and thick hair. She lost hair at the nape of her neck and at the temples bc the cap was not big enough to cover her hairline. Now she is using the extra strap to encourage new growth, but I'm sure she would tell you to use the strap from the beginning if needed to cover the full hairline.
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soccergirl: you aren't kidding! Three years ago I was treated for a pre-cancerous endometrial condition, first with mega-hormones, then with surgery when hormones failed. I'm convinced those hormones fueled my breast cancer (it is listed as a distant risk). I'm hormone positive, but there's no test for that -- that I know of -- in advance to determine that risk before cancer develops. I should have just had the surgery straight off. (The hormone treatment was the worst thing I've ever gone through medically, except for post-surgery when I ended up in ICU fighting for my life because somebody didn't wash their hands properly.)
Ironically, I'm not at risk for uterine cancer from tamoxifen, now.
I think you're referring to the t-cell announcement this week. It is very exciting indeed, and has potential to aid in battling other cancers. This is something that has been studied for a while, but the newest version had good (but small) early results. Four CMLeukemia patients participated; their blood was withdrawn and the t-cells altered, then reinjected. The new cells formed super-armies of "good guys" that hunt and kill any existing cancer cells, but the new cells also stay on duty and kill any new, emerging cancer cells. Three of the CML patients have been cancer free, the fourth is not but I think had a retreat. (I hope I'm describing the study correctly; I think I've got the gist of it correct.)
I too struggled with the decision to do chemo, and am very very happy with my decision, especially as I continue to meet women who have had recurrence -- 2, 3, 15 years later. I know the odds are still there, but they're a little more in my favor. I'm an active adventurous woman with a long to-do list! Whatever time I get in this world, I need to live fully!
Howard: I'll keep you posted on the nutritional supplements. And I don't know why -- post chemo -- I keep forgetting how incredibly effective acupuncture is. I went in with a boatload of symptoms this morning, and have been smiling and happy and pain-free all day.
Laura5: my caps came with the gel strap, but I wasn't really sure how to use it for eyebrows. The cap itself came down low enough that I didn't want more cold on my face. I think PCC co. could provide more info or an enhanced video (including more detailed use of the velcro straps). It would be helpful to many.
Susan
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Laura5. I did not use the extra gel strap, did not know it existed. When I met Ralston and did a run through with her with the coldcaps I marveled at the gel strap. I wish I had the choice of using it. It fit just right along the base perimeter of the cap giving extra protection to the neck and over the ear areas where I lost all my hair. I think I could have kept that hair had I used the gel straps. Ralston still has hair there - her 3rd infusion was today. As of now I vote yes on using the extra gel strap. I think Ralston will have more to say about it as she goes through her treatment.
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Istreet - I am so sorry your experience where less than "great", I have to said that after 5hrs yesterday I was also almost given up as well, but then a woman came today complaining about how horrible is to wear a wig: it's itchy, she developed rash, infection and sarna because of the extreme heat, and the one wearing a scarf complained because she felt her pillow was like trying to sleep on top of a "pork spin". Well, I guess each one select her on ways to make this "healing journey" more "interesting" in the process.
Laura- As you will see on my pictures gel bands have help me a lot to keep so far the hair in my back and my sides.
Definitely for my 4th and last AC I am taking Aleve 2 hrs. earlier, Ativan 1 hr. before and IV Ativan.
Here are some of my pictures today after 3 DD AC (Red Devil). This make me forgot yesterday's pain and torture. It's like when you see the baby after give birth: You remember how painful it was, but suddenly it was not that bad.
Wonder why my husband and my ON where doing the happy dance because I have only one AC to go.... I start to believe this is a reeeeeeeally strong treatment. I keep thinking, but I still have 12 taxol to go... It did not matter for them I am almost done... Pinguin confused...
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"That said, these is how much I have been shedding after 2nd AC. But I focus on the hair on my head not on the one in my bags
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Did you put the gel bands on over the cap? Does the black band go on over the gel bands? Thank you all for your tips! My first treatment is Monday and I need all the tips I can get.
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Ralston!! You look fabulous and I see your beautiful smile! I also see the hair over your ears is still there as well as the nape of your neck... Very very nice. Please tell your hubby I am impressed. That is a very respectable thickness of braid. Hugs to you!!
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Laura - First, we make sure that my top is cover with the cap, then we tied the cap with one of black straps (as in the video) bands. Then we place the gel head band on the back making sure that is covering all the roots from the back (it's a little bit touching the cap), finally we make sure to bring it all the way to the front covering my sides on top of the cap where is more plastic than gel (where the back of my ears are) and we use the second black strap band to attach it.. I use a third yellow strap to secure the cap to my crown. That said, my hair is really thick and so far has protected my ears to get super cold and I have been reeaaaaaly careful to get the right temperature and protect my part with a gaze to avoid frozen bites. Good luck!
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Wanted to add my thoughts on nausea...first Tx the caps made me very nauseous...by the end I had a trash can by me...all thought it was the chemo, but no the waves came at cap changes...I am a firm believer in pain killer and Ativan plus zophran or emend for this....by second treatment...I never had another nauseous moment through chemo....stomach issues yes, but no true nausea.
Ralston, you hair looks great! Yeah!0 -
Ralston- you hair looks good! I didn't have an option for gel band
. You are going to do just fine!0 -
Hey Ladies Its been awhile but I am 9 weeks PFC and the shedding has resumed to normal pre chemo! I got a real haircut and blowout last week and cried when it was over because after all the hassle, expense, naseau and stress I was finally on the otherside with a head of hair that cancer did not take! Its scary and stressful but if you keep diligent with the care and wearing caps even when you want to shave your head and burn them. DON'T it means more to me to walk aroud 9 weeks PFC looking like I had never had chemo. I lost 4 zip lock gallon size bags of hair but you would never know, apparently I had more hair than most and my hair dresser says now I know what the rest of the world feels like. Having hair at the end of chemo and going to the hairdresser was like closure for me. I wish you all the best and be well.
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Thank you all so much for the tips on the gel bands, you guys have been so helpful!
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nmoss1000: Thanks for checking in, great to hear from you, and Congratulations! I know how good that cry felt :-) You sound strong and positive. Carry that with you!
xo
Susan
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Nmoss so glad you stopped shedding...mine is still shedding 13 weeks PFC....grrr!!!! It has to stop soon. It must have felt nice to have your hair styled...I am still waiting.
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Hi ladies!
I am 8 weeks PFC, and planning to cover my gray hair. I would like to know what brand had work better for you.
Thanks,
Tiki0 -
Tiki, I went to Sally's Beauty Supply and used Clariol Beautiful Collection...no peroxide no ammonia...Sally's has their own brand too...I used it 3-4times before I braved real hair coloring. 5, 9, 12 weeks PFC. No ill effects....and actually loved that it washed out.. I went dark red for the first time in my life and loved it. Think the most important thing is to get no ammonia, no peroxide...beware if you use white or light towels, because it does come off little by little with each wash for the first 3 washes...then fades for about another 2-3weeks
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lmflynn - what kind of chemo did you have? I haven't had the best success with mine - AC/Taxol. i'm almost 3 weeks PFC and I'm shedding terribly. I still have the big flakes on my part line and i hardly have any hair left. Literally. I noticed you're a triple negative like me.
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LivCar- I had TCx4.....I still wonder how onco's decide on chemo...I live in Houston and went to MD Anderson for 2nd opinion...they gave me 3 choices ...and told me none of them were bad ones....did you have DD...it's seems just anecdotally that DD is harder on the hair than AC -T(12).....
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LivCar - Have you asked Frank about your "big flakes"? Is your scalp too dry? How often do you shampoo your hair? When did you notice it first? Some people who have weakened immune systems, such as those on chemotherapy may have seborrheic dermatitis. Symptoms include patchy or thick crust on the scalp, flakes, itchy, red, yellow or white scales that may attach to the hair shaft.
Have you consider to see a Dermatologist? I know another doc..... grrrrrr...
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Ralston - I haven't heard back from Frank, but flakes are slowly working their way out. Taking hair with them, unfortunately. At this point i have to let them lift so that my healthier scalp can grow hair. I was washing weekly, very healthy thru chemo, so i'm not sure what happened. My hair is so thin after today's washing that i'm almost hairless. There's one single thin layer remaining. I just hope it hangs in there!! I'd hate for it to all fall off after 4 months of agonizing!
Lmflynn - DD for both AC and Taxol. 4 of each. Yeah .. i don't know how they decide! But i guess each onc has their favourite cocktail! I was curious because there's so few of us triple negs on this site.
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LivCar - Believe me I feel your pain and I am not even half way yet!!! We must keep in mind that DD AC/T is a really harsh regimen. You worked really hard and it paid off because at least you still have hair. Most women on the same treatment are not that lucky. I don't think all your hair will fall off but please keep me inform because you are totally right I will hate also to end bald after all. I can't even think about the caps without feeling sick, but I will not quit (we are talking 4 more months) because even if I end having my head covered with a very very thin layer of hair, I know I will feel better than if I have to look at myself bald for almost a year. This weekend I lost a ton of hair, but my head is still covered. I'm gonna say about 65 % at least. I am hoping to start growing back hair during the weekly Taxol (many women do), this will give me hope and I will be able to finish without any complications.
I decided to order a costume hair replacement. I hope they can design a hairpiece to wear on the top of my hair to add volume and shine. My favorite seasons are coming and I want to enjoy them fully!!!!
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Susan,
Susan, and anyone that sweats,
I start chemo on Monday and will be using PCC. I have been reading much earlier posts to get all the info I can. I noticed that you exercise a lot, so would like to know what non aluminum deodorant you use that actually works? I have tried Tom's, Crystal, and another natural one (can't remember name), but they just don't work after about an hour it seems. I never realized I sweat so much, but I am so uncomfortable with all of this sweating and maybe this is TMI, but I don't like to stink! I have to reapply so often, that I have developed a rash on my underarms, ouch! HELP girls!
Thanks for any advice you have
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I asked my oncologist for a deodorant recommendation to avoid aluminum. She said that studies show that aluminum is safe and I do not need to avoid it. Now I'm confused. Is there any research showing that we truly need to avoid an antiperspirant? I'm certainly willing, of course, to use use a less effective deodorant - but only if necessary. Anyone know of proof that antiperspirants are bad for us?
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