Cold Caps Users Past and Present, to Save Hair
Comments
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I don't remember my chemo nurse telling me about nail issues on Taxol. I do remember her telling me a couple of times about neuropathy and she stressed that I bundle up my feet and hands when it's cold, and not to use extremely hot or cold water, be careful not to touch anything from the freezer or even the fridge with my bare hands. So, I do not understand the icing. Won't it cause neuropathy? It's against everything she told me.
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I read everything I could about how to try to prevent neuropathy from chemo, and nothing said anything about (1) icing helping prevent it or (2) icing potentially causing it.
There were suggestions about supplements you could take to try to prevent it, but none of that is proven. In fact, one trial showed one of the supplements suggested (and that I was taking) actually may have worsened neuropathy.
Most of the studies about this noted they do not completely understand the mechanism behind how chemo can cause neuropathy. But one of the theories was that the chemo damages the nerve proximally - near their origin at the spinal cord level. If this is true, then icing would do nothing to help prevent neuropathy. Only something taken systemically (by mouth) could have a potention preventative effect.
I have a medical background and know how to read research papers. This was my synopsis after studying neuropathy extensively. YMMV. I was petrified of developing it because I have treated many patients for it (unsuccessfully).
As soon as I started developing neuropathy symptoms I started having frank discussions with my doctor about reducing my dose. It was not a side effect I was willing to live with personally. Thankfully, I did not develop chronic neuropathy.
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Dancetrancer, thank you for the explanation.
Would you mind letting me know which supplement might be worsening the neuropathy? I'm taking L-Glutamine and Vitamin B6. Is it one of them?
How long into your treatment were you starting to develop neuropathy? Did your doctor lower your dose then?
BB
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Hello everyone, my onco put me on the Glutamine and B6 for the neuropathy issues. I have my last treatment next Wednesday and so far I haven't had any significant issues with it. I also ice my hands (along with my head LOL ) and my nails are brittle but not turning colors. I paint them a dark color during the day of treatment and the day after. Two days later I take it off and put on the Sally Hansen Hard as Nails everyday for a week. I just keep coating it on. It's clear. If I feel like it after a week I stop and take it off. I was given this trick my another cold capper.
This may not be the thread for this but since I started this journey with this group, I would like your input. I am staged 2B. I had to quit reading the other threads on this site because I keep reading about women who were staged early (with and without node involvement) that actually already had mets to the bone etc...... I have been having a lot of lower back pain, hip pain and leg pain, particularly after round 3 of chemo and neulasta. I am on TC and I was just wondering if anyone else experienced or experiences body and muscle aches with their treatment. I know this sounds bad, but I really don't want to ask for anymore test because every time I do, I get bad news. I just want to try to get through all of this first. Sounds stupid I know, but emotionally I just can't right now. I will let my onco know when I see him next week for treatment 4, but I'm feeling like I have an almost irrational fear.
They didn't do any scans with my diagnosis, nothing, they said typically for early stage BC scans aren't warranted due to the number of false positives they can show. I have been sleeping in a recliner since Dec. 8th. My expanders hurt when I try to lay down. So I'm sure some of this discomfort has to do with that, but since I've been diagnosed I have this fear that my cancer is every where and they have missed something. Is this irrational or all part of the process we are going through? Any thoughts would be welcome. Thanks for listening, I've been harboring this inside for months now and just want to get it out.
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I was stage 1 so no scans either (grrrr!). I had all kinds of aches and pains during/after chemo. I finally pushed my MO for a bone scan because of rib pain and she let me get it....nothing there. I would give your body some time. All of these meds react different in everyone's body. I also think stress plays a big part in body aches. I found I tended to eat more carbs during chemo (I craved them) and typically carbs with gluten are very inflammatory to the body.
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U4iachic - I think it's perfectly normal to be scared and to think that every pain is cancer. I would imagine most of us have these fears. My husband is a doctor (not an oncologist though) and he told me that I would become a "cancer-cripple", where I will be afraid that every pain/ache is new cancer. Similar thing happens to many people who went through heart attacks - every little heart flutter will make them think they're having another one.
I had surgery before my chemo and since all the margins and my sentinel nodes were clear, I was told I am cancer free. Of course, I do not feel that way, while undergoing chemo. I asked my husband how can they be so sure I don't have cancer anymore and he explained to me that that's why I'm getting chemo, to kill any remaining cancer cells if they are floating anywhere (to me it feels like using a nuclear bomb to kill an ant). He said that everybody produces cancer cells, but the immune system normally kills them. In our case it did not, sadly. I asked him why the oncologist is not ordering any CT scans or PET scans, and he says that these tests subject a person to unnecessary radiation when there are no indications that they are needed.
I get different regimen than you - mine is Taxol and Herceptin. After my 3rd treatment I had a lot of bone and muscle pain, I was very achy. I've been having a thigh bone ache on and off last year, prior to my diagnosis, and of course I am obsessing now. My other, "healthy" breast had some shooting pains for a couple of days recently, and I am so scared, I have not mentioned it to anybody. I'm not sure what to do. I had a lift performed on this breast at the time of my mastectomy and TE placement on the other side, and some tissue was taken from it too and sent to pathology, which did not show anything abnormal, which doesn't mean of course that nothing else is lurking in there.
I have thyroid nodules which were biopsied last year (prior to my BC), were declared benign, but now of course I wonder sometimes.
I think you should mention your aches and pains, as well as your fears to your oncologist. I am hoping that all it will turn out to be are side effects of your treatment, and that he will have some calming words for you.
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I believe it was acetyl-l-carnitine, but don't hold me to it...I do have chemo brain now, lol!
In all seriousness, I found this nice summary of guidelines put out, and you will see ALC is listed first as not one to prescribe as it may actually cause more harm than good - so I think my poor chemo brain is recalling correctly.
ASCO Releases Guideline on Prevention and Management of Chemotherapy-Induced Peripheral Neuropathy in Survivors of Adult Cancers
I started to develop neuropathy (in my face) after my 4th treatment. It was fleeting and was gone within a day or two. But it was enough for me. I stopped at 4 treatments (my risk was not huge, chemo was controversial for my case, so I decided this was the right decision for me). I have a low tolerance for this symptom and even though I know docs say neuropathic signs usually go away within 6 weeks of stopping treatment, I wasn't willing to take any more risks with it. If I had a more aggressive cancer I may have made a different choice.
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Ladies - these thoughts of "has it spread" is part of your new normal. You will learn to live with that fear and come up with strategies to deal with it. Every scare gets easier and easier to deal with, but when newly diagnosed it is very hard. But it does get better!
I've learned to say the following things to myself when my brain down goes the "fear rabbit hole", which is what I call it:
1) Don't let cancer take your present enjoyment of life away from you! It's already stolen enough from you!
2) Worrying will not change my prognosis one damn bit. But it sure will ruin my day, week, etc. if I let it take over my mind.
3) Live in the now. The future will present itself and I will deal with whatever that is THEN. I'm not going to ruin my present by worrying about the future.
4) F* you cancer (lol...gotta have some humor)
Hang in there newbies, you will indeed develop strategies to deal with fears. No one, and I mean NO ONE is promised tomorrow. How many people die in car wrecks every day? We all have an expiration date. None of us knows when that is, so seize the day. Cancer is a gift in some ways - if we allow it to be - it can teach us to live more in the present, enjoying each precious moment of our time on earth.
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Thank you dancetrancer. I've been thinking about the after part a lot now that I'm down four with only two to go. And you just helped. A lot. I've been waiting for the right thing to come into my head to push the fear away without internalizing it. (Because you know on top of giving you alopecia, worrying'll kill you.) I'm just going to go to my appointments and remember that worrying will not change my prognosis one damn bit. But it sure will ruin my day, week, etc. if I let it take over my mind. And hopefully we won't get hit by a bus on the way.
You all are amazing.
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oh U4ia!! Huge hug. I feel you.
First, bone pain during chemo is completely normal. If you are having neulasta or neupogen it's a completely expected SE. My MO suggested Claritin for it. No one knows why it works, but it seems to for some.
Second, you should absolutely raise your fears to your MO. When you feel up to it. This is also totally normal. I am just a few weeks short of my one year diagnosis anniversary, and can see the pattern dancetrancer describes - it is slowly getting better. Your cancer center may have an oncopsychiatry dept (mine did - and it helped a lot) which your MO can refer you to. This is the time to take any help available. I did not take any meds (felt I was already on ALL the pills), but the oncopsych was super experienced with anxiety - esp anxiety about recurrence - and helped me with some tools to cope.
I also totally agree w everything dancetrancer says above (except the gift part. Sorry - I'm more in the f$!% cancer camp!). I've picked up a regular meditation practice which has helped me a lot with learning to live in the moment.
Hang in there sister, you've got this. And life on the other side of treatment gets better every day
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Ha ha ha! Yes, please, no bus take-outs today for any of us, please! LOL
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Dancetrancer - thank you. At least what I'm taking is not what was deemed harmful.
I also learned something new - I didn't know about neuropathy in face. I always though it was just hands and feet.
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LOL Raindew!!!! I agree, I am WAY I'm more in the f$!% cancer camp!
But I try to think of something good I take away from this crappy nightmare, lol! #mentalgymnastics
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The something good I take out of this crappy nightmare is the amazing ladies like all of you that I have met (or at least bonded with online or on the phone!). Another thing is I do live my life better than before BC. Wish it didn't take BC for that to happen though.
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Oh and also, *%&*^ cancer.
(hha.)
(and dt, my husband also thanks you. we're all going to go around quoting you now. you'll have cult status. but no poison kool-aid please. we've had enough.)
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Thank you ladies so much! I will speak with my onco next week. I keep telling myself, you were fine a few weeks ago, I'm pretty sure mets don't pop up and cause this much discomfort (coincidentally) a week and half after treatment and neulasta. I need to get out of the crappy mind frame I'm in. I'm having a massive pity party the last week or so I believe.
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Hi all,
I am a first-time poster but long-time lurker. All of your posts have kept me sane through this journey. I am 2 hours away from starting my last cycle with TC today, and I have a (70%) full head of hair!! I live in Southern California and would like to donate all my accessory cold cap supplies to anyone in the area who might be starting cold capping soon. I am willing the drive the supplies to anyone in OC/LA/Riverside County areas. I have 1 cooler, lots of moleskin, an infrared thermometer, and some insulated gloves for your helpers. I even have some meds/supplements that I never used if interested, such as claritin, zofran, glutamine (all unopened and in original packaging). Please PM me if you are soon to be capping and would like these items. I know capping can be a very expensive process so just trying to "pay it forward" and help anyone who might need it.
Grace
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You ladies crack me up! I don't post as often as I use to-too darn busy, but I do follow your posts. Congrats to all the Cold Cap 'Graduates'! It's inspiring to see so many more women using the caps. Especially the ones that are forced to advocate for themselves against all the naysayers. As some of you may know I have been helping woman with the caps since 2009. I communicated frequently with the inventor and staff at the Penguin cap company . I was told the 'other' caps weren't effective at preventing hair loss, and am sorry to say that I believed it. I can now report with confidence that the other caps-the Elastogel caps, do work! I have recently helped 3 women with the Elastogel caps and they were successful with saving their hair. The first woman I helped had 3 treatments of Taxotere/Cytoxan followed by 2 treatments of Taxol for a total of 5 chemo treatments. I must admit that I was relieved that her regimen was changed to Taxol because I believe it is less harsh, for hair and side effects in general. The 2nd woman I helped has had 4 rounds of Taxol. I don't see any thinning but she said she has experienced an even overall shedding. The 3rd woman I helped is receiving 4 treatments of Taxotere/Cytoxan. I was very worried that she would lose more hair but am happy(elated is more like it) that she believes she has shed less hair than before starting treatment! She has had 3 treatments thus far and her hair looked fantastic! The window of time between treatment 2 and 3 is the best gauge of cold cap effectiveness. I will upload the pics to the website soon so that you can follow their progress. http://penguincoldcap.wix.com/help
I'm happy to find that the Elastogel caps work-They are much more affordable than the Penguin caps without the added stress of having to alert your bank of international charges, creating a UPS account, and the unnecessary forms that the Penguin company requires.
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I read an article today that discussed the linkage between depression and individuals recently diagnosed with breast cancer. The shock from the diagnosis, stress, insomnia, constant fear that the cancer will spread or already exists in other places and worries about the future are main causes. I worried that the cancer was in my other breast, that it was in my stomach when I had pain, but the tests show they're ok so I'm hopeful nothing has been missed or overlooked. Thanks Dancetrancer for your tips. They're very helpful! As others have mentioned, it's normal to have such thoughts but we have to find a way to stay positive, uplifted, and force the negative thoughts from our minds so we limit our stress and not get depressed. Cancer has taken enough. We need our minds to help our bodies heal.
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Thank you, Dancetracer, for the pep talk!! Love the attitude you have .... hope we can all take something positive from this hell ride we are on .... I'm officially done with chemo now and its time for me to move on and get my normal life back. Thanks again to all you ladies especially pch for always being there for me even when I'm grumpy
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I just learned of my recurrence 3 weeks ago. 😥 it's Was local and only in one of my auxiliary nodes. Crazy. It's a constant fear but it s just something we gotta live with.
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Sorry Alibeths
Hate that you have to deal with this crap again. We are here holding your hand 0 -
BB- I had mild neuropathy in my fingers after my first taxol treatment. I had tried icing but found I could tolerate. Icing scalp far easier. I began L-glutamine and B-complex supplements and noticed nearly no tingling from there on out.
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Just hit my 'big shed' - it's as devastating as everyone describes. But I just pull the hair out of the sink or the comb and toss it without another glance. Sigh. Hopefully it slows down soon.
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Dear WpMoon, I just had my second round of Cytoxan and Taxotere yesterday and it is hard not to be discouraged with all the shedding!! With all these wonderful women here who have had success, my approach is to hope is to just keep checking in and do all I can to support my hair. Sending you love and hugs during this crazy time. Kimberly
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wpmoon, sorry to hear that.
When did you start your chemo? I'm trying to gauge when I can expect my big shed. And I'm sorry, I don't remember - which drugs are you getting?
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Any of you ladies began to have your hair growing back on Taxol only? My MO told me that my hair was going to being to grow now that I am starting the weekly taxol.
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Hello Ladies,
My wife is pre-menopausal and is diagnosed with stage 1b IDC. She is starting her 1st chemo session in about 3 weeks and I wonder if any of you have had good success with Peguin Cold Caps for the following regiment:
AC - 4 cycles every 3 weeks (A= 60 mg/m2 and C=600 mg/m2)
followed by:
4 cycles of Toxol 80 mg/m2 (12 weeks)
Is it worth using the cold caps given the volume of sessions (16 sessions - 6 months)?
I appreciate your feedback.
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There are a few gals here that did have some success with that chemo. I hope they will comment. Generally there are better results with some other chemos.
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Welcome Captain Support. You've come to the right place to learn more about the possible use of PCC's for your wife! My story is similar to hers....pre-menopausal dx with a 5 month treatment plan - 4 rounds of AC followed by 12 weekly Taxols- for a total of 16 infusions. Well, I am happy to report that I have completed the first 8 weeks and still have a full head of hair. Today I flew to Grand Cayman with my husband and my kids, just 4 days after my final AC, and no one would've guessed that I am a cancer patient. To me that is priceless. Granted I don't feel like myself nor do look like myself - kind of like a really "bad hair day" version of myself but still, I am so grateful to PCC for giving me a sense of normalcy during this grueling process. I do believe that the results for the AC-T combo aren't as great as they might be for other drugs based on past users in this forum; however, there have been those that have had success as well. I just live for the day and am happy for each extra day I have with hair as it helps with my sanity - having some sense of normal in an otherwise abnormal situation. I wish your wife all the best regardless - caps or no caps. She is lucky to have you doing the leg work prior to starting chemo. It is all so scary and overwhelming. Good luck!
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