Cold Caps Users Past and Present, to Save Hair
Comments
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It all made perfect sense, Kaydee, and I appreciate your efforts through the fog! I have some tweaking to do with the system - ran out of time to get masking tape for the numbers on the boxes, moleskin stuck to bangs as I didn't have time for template as Sciencegal recommended, etc But the hardest part is done and I now know I can do this.
Thanks and best wishes to all!!!
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I think some women are lucky like Laura5 and their nails fare well, but I have seen others who were not lucky and their finger nails were horribly deformed - yellow, thickened and deeply ridged like an old man's toenails. Other women have their nails darken, then lift partially or entirely off of their nail beds as the chemo hit and damaged the fast growing tissue underneath them - toenails as well as fingernails.
INMHO icing is worth not suffering such damage.
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YAY Portland you made it through round 1! If you haven't already considered it, you may want to keeep a day jounal of your vitals/SEs...I tracked my temp, bowel activity (sorry TMI), how much water I drank, and any side effects I noticed. The patterns stayed the same each cycle and it was very helpful to know which days to expect what...hopeully you won't have much to track! Way to go with the caps...I think we all had a misstep here or there and still did okay. You'll know once you make it to 21 days with hair and then you just keep repeating the cycle.
As for capping after chemo, I did not. After the first round, I tried doing 2 caps a night out of the freezer between treatments, but only made it 2 days. I just couldn't keep up with it. And the day after chemo ended, my husband couldn't pack the caps up quickly enough for me. I was thankful they did the job but so happy to see them go! I think you'll have great results and probably won't feel like you need to do them any longer than is necessary.
Take good care of yourself this week!
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Thanks again, Hope! I printed out a log and started it - another great idea! I will also get some 2 gallon bags for next time to cool caps down faster if too warm. Gosh I hope the caps work!!
Feeling OK today but steroids are still on board. But I've been able to do some catch up around here and about to take a little nap. Hope the weekend is kind to me and all of us!!! Thanks so much
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If we're only washing our hair once a week - what are you wearing on your head/styling your hair inbetween? My hair is greasy and I'm not washing it til Monday. I have long thick dark hair. Can I bun it? Wear baseball caps? Knitted hats?
Anyone know if you can go swimming (under water)?
Thanks for your help.
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I used a combination of dry ice blocks and pellets in my coolers. The 20 pounds of pellets were distributed between 3 zip loc bags. I double bagged but remember to not close the zip all the way or the bag will explode. We learned that the first time. I reversed the openings of the bags so the pellets would not fall out through the opening. If a cap was not cold enough, my helper would place it on a towel on top of the cooler and pack the pellet bags dirrectly on top of the gel portion of the cap. It would cool it down a couple of degrees in a minute or two. She also used the pellet bags on the brow strips because they always were too warm and needed cooling down. The most important thing is the timing of 10 minutes with a cap on when they start the taxotere since that is the optimum cooling time for the cap on your head. Good luck!!!
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anniej76 - one woman on here swam daily, but was sure to carefully rinse her hair in cool water afterwards. I think someone else did also.
I washed my hair every 3-4 days. I wore a light kerchief tied behind my head under my hair on the very worst days when I didn't want anyone to see how greasy it was. When I went to the beach I'd wear a light straw hat, but made sure it didn't tug on my hair in any way.
I think a baseball hat would be fine as long as it didn't put any pressure on your hair's roots which are very fragile during chemo. I'd be wary of putting it into a bun because of the inevitable tugging on the roots. I think some longhaired girls used soft scrunchies low down from the base of their heads to confine their hair into a loose pony tail. Again, beware of any pull on your roots.
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I wore a bandana tied loosely at the back of my head most days. Some days I wore a ball cap as long as it was loose on my head. My hair was oily at first but as chemo went on, it became less and less oily. It remains that way and even has a bit more body than it ever did, I think. One of the silver linings of chemo...gotta takem' where you find them!
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Trying to upload a pic using the URL from photobucket...not sure if it will work, but here you go.
Here is my hair 1 year PFC - have highlighted it several times.
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Wow dancetrance you look amazing. Once I complete my treatment I will post picture. Xx
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dancetrancer and hope, you look gorgeous!
curly, I am so happy for you! I feel like I've been on the journey with you - welcome to the PFC club!
To answer the vacation question, we're headed to Italy as soon as radiation is over!
I agree photos are helpful. Here are my before & after. I had a LOT of hair to start. You can tell it has thinned and I can't style it as much, but this is proof the caps work! (I'm just now starting to see good growth in the bald patches over my ears)
Wishing all you current cappers only the best. You'll be posting your own PFC photos soon -- with hair!
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Dancetrancer and SusieQ you both are gorgeous!!! Yay Penguin caps!!
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dance trance and susieq - wow! so much hair - both of you look FANTASTIC:)
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The pictures are amazing never would have believed you guys gave gone through chemo. This is sooo inspiring and hope filling for us girls still on the road of chemo. Keep photos coming please xxx
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Thank you everyone! It was inspiring for me to see photos, too, when I was going through it, so I try to pay it forward. You WILL make it through, and the majority of women DO save their hair with the cold caps. It is so worth the effort, IMO. And life DOES come back after treatment - truly, it does!
SusieQ you look fantastic!!!!!!!!!!!! YAY!
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SusieQ and Dancetrance, you both look great. Hope you feel as good as you look. I think having hair post chemo really helps us get back to feeling normal much more quickly.
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jc254, I feel fantastic! Back to my old self, working out (dancing, of course) hard as ever!
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Thank you girls, the pics are great. I am going to try to post a before and after pic once I learn how. I think I look like I have aged in other ways over the nine months of chemo and surgery, but my hair is now the same as it was (yay coldcaps!!!!).
Good luck to all the current cappers!
For now, my avatar that I posted is a couple of months post final chemo. I am SOOOO glad I learned about these caps.0 -
Dancetrance and SusyQ, you both look wonderful! Thanks for sharing your pics. I know it really motivates the new cappers, and we all love seeing success stories
. I senta suggestion to PCC to post pics on their site but they never have - I think it would be so helpful when people are looking into it.0 -
Hope 49 - I am now 7 months after my last chemo and my hair is finally feeling better. I also used and continue to use the derm organics shampoo and conditioner and once a week used an Aveeno repair conditioner (comes in an aqua tube) that I leave on for 30 minutes before washing it out. This helped a lot. Hope this helps.
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Dancetrancer & SusieQ - you look gorgeous! Soooo happy for you. The results are incredible! So happy to see that.
tmb - yay for vaca! How exciting! I am scared to book something too soon.
Bought some new natural shampoo. Will use it today. Just hoping things hang on.
Shipsgirl - r u ok?
xo
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Dancetrancer and SuzieQ - You two ladies look wonderful! Congratulations!
sciencegal - I also looked much older after chemo. It was surprising and to an extent demoralizing as I have always looked younger than my age and been proud of that. When I mentioned it my onco doctor at my six month check up she told me that people who look younger than their age tend to look their age after chemo. However, I can report that the situation does improve, so take heart.
Almost a year after my last chemo treatment, I am looking and feeling much better. My skin is regaining a younger, healthier look after looking old and unhealthy for so long, and my hair is full and glossy once more. I have also been able to take off a dozen pounds through diet and exercise which has made me look and feel better as I am slim and fitter again which is an improvement over my shapeless, blobby form last year - which my doctor attributed to "chemo deconditioning". I think our bodies go through such a beating that it takes a lot of time to recover, more than we realize.
As I was going through treatment last year - surgery, chemo and radiation, I was so focused on the day to day that I wasn't able to see the bigger picture as I can now. I am only lately realizing how very sick I was at this time a year ago, and I am so grateful to feel well and strong again. I really didn't have a summer last year so I am making a conscious effort to pause along the way and savor it this year - the warmth, the flowers, the spectacle of lightning bugs each evening and the breezes playing with my full head of hair. I feel very lucky.
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I've had a constant headache since day 2 after chemo and its now day 5. I went off zofran 2 days ago, which is the only drug that has that side effect. My on suggested maybe it was the cold cap and I didn't buy that. I said people only feel uncomfortable for a few minutes wearing the cap, and burns can occur but I don't have any. This is a tension headache that will not respond to any kind of drug.
Anyway, just checking my theory. Has anyone had persistent headaches after capping? I really don't think that's it but just making sure.
Her next theory is it may have something to do with coming off prednisone. I think that's more likely.0 -
Hi marsha1970. I haven't heard of anyone with persistent headaches after capping. I sometimes had a bit of a tension headache the day of treatment, which was due to the strain of "pushing back" while my helpers were fastening the velcro, and perhaps the weight of the cap itself. But the headache never lasted beyond the day of chemo. I had permission to take Excedrin as needed, and that seemed to do the trick.
By the way, I used a neck pillow, one of those "C" shaped ones, and it really made sitting in the chemo chair a lot more comfortable.
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Marsha1970
I've not heard of a persistant headache due to cold capping however I do agree the steroid drop could do it. Don't give up - cc are so worth it.
Does anyone know when I can professionally color my hair again? Last TC was July 2nd and I'm still shedding a bit so will definitely wait for that to end but is there a general rule of thumb? I feel like an entirely new person now that chemo is finished and I don't need rads so want to make a drastic color change but don't want to do it too soon. Also I have my exchange surgery scheduled for August so I will be an entirely new person.
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My neck was a bit sore, and I had a bit of a headache the day/eve of capping - felt like it was due to the extra weight of the caps. It did not persist. I think the Zofran is a much more likely culprit. If it feels like a tension headache, you could ask if you are allowed to get a massage or try acupuncture treatment.
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Marsha-A few of the women I have helped have had painful headaches. This was attributed to the Neulasta injection. It can cause bone pain in the legs, pelvis, and the skull! Who would have thought...Luckily every injection doesn't yield the same result. The following injections are usually much easier.
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I did not have a headache from the caps, nor did I have pain from Neulasta. I was told to take Claratin to ward off any Neulasta pains, so I did and it must have worked for me.
I would suspect some medication as the cause of your persistant headche. I hope it goes away so you can rest. I cut out as many meds as soon as possible after each chemo. I had a whole bag full of unused meds to hand over to the pharmacy for disposal afterwards.
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AmyQ the protocal is no permanent hair color for 6 months. Lots have used semi permanent...I waited 3 months for that. Clairol beautiful stick worked pretty good.
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Hi Marsha,
One of my worst side effects after each treatment has been heaches, but I don't think they have anything to do with capping. For one thing, they usually start on day 2-3. Percocet has done the trick after Motrin wouldn't touch it. The weird thing is, I usually get headaches behind my eyes and at the temples, but I get these in the back of my head. I just chalk it up to the chemo- ask your doc if you want stronger pain meds.
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