Cold Caps Users Past and Present, to Save Hair
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Susan:
I think you need to write a little do's and dont's of Chem book. I also wanted to thank you for coming on here and helping out us newbies.
Arlene
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Hi All here is a pic 17 days post chemo # 1, I have not experienced any hair loss (ANYWHERE). I am up for round # 2 on monday and I expect it to start after that. I have noticed a 75-80% slowing of hair growth. USed to shave my legs every other day now it's every 5 days. I also have noticed my hair is a bit drier than usual. So far so good with the CC. Here is link, not sure if the upload works. We need a whole section how to insert photos!
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nmoss1000; you look so beautiful even in the infusion chair with the caps on your head! Best of luck, hope you sail through it!
ArleneA; a few days after every chemo, I would get heart palpitations but they would go away pretty quick. I found the timing of my side effects were very predictable after the first 2 chemos, and this made them less scary. Definitely talk to your doc about it though; the fever does sound worrisome unless maybe it's the decadron "flush"? I got this everytime a day or two after chemo.
Sashasz3--this treatment is such a process and every stage feels like a big hurdle. I had a lumpectomy, then chemo with the caps, then a mastectomy, and now I'm struggling with starting on that bottle of Tamoxifen. Been carrying the damn prescription around in my purse for a couple months. Taking that little pill will probably be the easiest of what I've been through, but looking at another 5 years of "treatment" when I feel like I just should be done with it all, is hard. I totally understand being scared about the radiation, although everyone says it's much easier than chemo. Hang in there!!
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Nmoss: I am 2 weeks out from my 2nd chemo and 5 weeks out from my first chemo. I started shedding right around the 3 weeks after first chemo time frame. My first wash after the second chemo freaked me out..due to the shedding. It is not noticeable at all though...still shedding a bit more than I did before day 21 but not as bad as what it was a few days following my second chemo. I have not shaved legs in almost 2 weeks.....nice! My brows have not had to be plucked in a few weeks. I noticed a little thinning in brows but not much or anything anyone else would notice. I started using lattisse just in case (about 2 weeks ago) for lashes and brows. I have chemo #3 next week....we will see how it goes! Good luck to you!
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Hi MDG which caps are you using? Thanks for the info. I was starting to worry and my skin has gotten really soft? like super soft it's frightening. Good for you for having a good go of it hair wise! I am expecting all hell to break loose during the 3-5.
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I am using penguin cold.caps. Are you using them too?
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Hi Mdg I am using the Elastogels. I spoke a little to soon I am starting to shed "elsewhere" bit not on my hair.
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Lucky60--I too have to do the tamoxifen--not even sure how I feel about that---bad enough the 6 of TCH--then adding 34 rads--the rx will be given to me next week to start when filled---My hair line at my bang level has started to thin ----what next??---I just try one day at a time----some days better than others----on the plus side--2 weeks tomorrow PFC--feeling stronger doing more intense workouts---at least I have control of that! How do most of you who need tamoxifen--feel about that drug??? I know the research is a bit stretchy
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Just got back from the ER where I spent the day!! My heart palpitations were from the chemo stripping my potassium and magnesium and they kept me until they went away but now they are back. They say the PVC's aren't dangerous but I need to be followed by a cardio guy during chemo and NO I have (didn't have anyhow) any heart problems.
If things continue this way, not sure I'll make it through chemo.
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sashsz3, lucky60: When I was getting ready to start tamoxifen, I read that user group on bcorg, and man was it a bummer! I had to stop reading, and remind myself that -- as with chemo and rads -- whatever happened would happen and I got no bonus points for getting anxious worrying about it. Yet another good move I made during all this! Turns out I've had mild and/or short-lived SEs and, those I've had, I've found non-chemical ways to manage.
I should say here, that I'd probably feel very ambivalent were it not for the onc who gave me a second opinion on my surgery. (I am a big believer in medical second opinions, always.) She said the biggest bang in all of my treatment was going to be tamoxifen, because of my hormone receptor status. Hormones fuel my cancer cells, and tamoxifen starves them to death and they can't get any traction to become another cancer event. Her words have stayed in my head throughout.
My medonc started me on 1/2 tamoxifen tablet for 2 weeks, then the regular dose. She told me any SEs would be the most pronounced in the first three months, then taper off. She was right. At first, I had hot flashes (real soakers, more than the usual chemo flashes) but I quickly realized they were associated with any sugar I ingested (sugar in my coffee, glass of wine, etc.) This has been great motivation to remove all sugar from my diet, well, except that glass of wine. I just take off my sweater and say "here goes!" and the hot flash is over in 15 seconds and by then the sip of wine has kicked in and I don't care... :-) Flashes greatly tapered off at the three month mark but the sugar is an amazing trigger.
I had sleeplessness for the first few weeks -- part hot flashes, part not -- so began taking Melatonin and it helped enormously. (Every three months you have to give yourself a melatonin break, then start up again. It's worked fine for me.) It too tapered off at the three month mark.
I recently had some leg cramps at night -- the first time was after a gruelling, butt-kick 10 mile mountain hike with a girlfriend. I've added more potassium and calcium to my diet and they've subsided, and I work in some gentle yoga stretches before bed -- it's a nice way to give myself a little head-clearing before I sleep, plus it prevents leg cramps.
I've noticed I get the blues a little easier, but I've also noticed my daily exercise (swim, gym, hike, walk, etc.) makes it go away instantly and I'm my happy, positive self. So I've a new routine: a morning hike to start the day before work, and a swim (sometimes with added weightroom stuff) after work or after dinner depending on my schedule. Plus the usual gardening, martial arts, motorcycle riding, other stuff I'm into, etc. (Now that the days are light longer, it helps tremendously! I think I'll need a winter plan for myself.)
I'm grateful to have found natural, non-chemical remedies, and also grateful that when these SEs kick in, I already know what the cause is. My doctor says those symptoms are proof that tamoxifen is doing its job at the cellular level. So every time I have, say, a hot flash, I just imagine tamoxifen kicking some cancer wanna-be cell's butt. I'm very thankful my doctor gave me a timeline of that first three months, it was tough: in fact, those three months were the toughest of any of my treatments including chemo.
I just realized, I'm 7 months in and before I know it I'll have one year down.
I saw my accupuncturist yesterday -- my favorite doctor in my care team -- and described my symptoms. She's having a nutritional panel done on me, and we'll look at all of my vitamin and mineral levels and adjust via diet or supplements accordingly. [I'll share what I learn with y'all.] She's holding a seminar in June with the head of Integrative Medicine from Memorial Sloan-Kettering, and I can't wait to attend.
Anyway, that's a long (sorry!) version of: don't be afraid ahead of time! As with all of this stuff, there's a whole menu of possible SEs and a wide range of their intensity or brevity. And we're lucky we give ourselves so much more of a chance, so that we never have to do this again!
nmoss: you are a beautiful goddess! just glowing! Your photos made me smile!
ArleneA: I'm so bummed you were in ER all day! I'm thinking about you. Hope your doctors can make some adjustments for you.
Susan
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Thanks Susan. I just did some research on Cipro which I'm on for my LOW WBC's and Cipro can cause palpitations too. I'll see what the cardio guy says.
Gatorade is my friend tonight!
I'm going on something similar to Tamoxifen and can't remember the name right now but they say it has fewer side effects. Can't even imagine having to deal with the flashes but as Susan says, they don't last long. If the NP listened to me on Monday, perhaps I would have avoided all of this....I've learned you have to be an advocate for yourself in this battle.
Arlene
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Hi Susan & Arlene, thanks for the compliments! Arlene so sorry you had to spend the day in the ER. Thanks for sharing though, I will increase my intake of foods rich in Magnesium and Potassium for sure. Your are so right about being your own advocate ! I had to battle my onc for weeks as to where I get my infusions! He has his own center and the hospital has their own. His center was not the ideal environment. It was extremely crowded and very understaffed. So I chose to go to the hospital where there were 10 chairs and 4 nurses. We also had to battle over pre meds, I wanted a benedryl drip and he did not but after 5 min on Taxotere drip I started having heavy breathing and chest tightness. Then they gave me a Benedryl drip. After reading so many stories on the boards, you learn that there is really on a few ways to skin this cat not a hundred like usually in life. I hope you feel better and The SE subside for you soon. The unknown every three weeks is the scariest part for ne.
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Susan: thanks for all your good info and positive perspective. Since you are a few months ahead of us, it is so helpful to learn from your experience. Did you discuss Arimidex as an alternative to Tamoxifen with your doctor? I'll be on one of those after chemo and don't know which one yet. Briefly discussed both with my dr.
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Hi nmoss, I sent you a PM with a few questions.
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howard: I didn't discuss Arimidex. My understanding is it's for post-menopausal women (which I'm not). My quarterly checkup is coming up, wish me luck! It's funny, my "counting" used to be days-post-infusion (and days with still hair on my head, til it became clear they were all gonna be that way!). Then the counting became a countdown through rads. Now, it's quarterly...
nmoss1000: I also vetoed my original chemo location: small, crowded, lousy parking. I took a tour of the alternate site: closer to home, natural light, comfortable, spacious, fresh flowers in the waiting area, valet parking, semi-private infusion rooms -- easiest decision I made. My tired brain was glad to not have to work too hard on that one! The physicians must get paid more favorably when the chemo is delivered directly at their office/site, rather than in the hospital/cancer center, just a guess.
Susan
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Susan--thank You for all of the info--I know I have to do the regimen----I too have the hormonal cancer--and have read about the battling benefits of tamoxifen---just one more thing "we have to do" to be on the winning side of the fighting team against cancer--
Hope everybody is hanging in here--and the SE's are few if not non-existent!
Sharon
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I had heartburn so bad that I thought it was a heart attack. I had taken Tums - a lot of them, and they didn't work. I kept getting worse so I called the doc on call. She told me it wasn't heartburn, but rather, the nuelesta doing its work in my sernum (the bones are expanding?), and she suggested I take Tylenol- extra strength, ever six hours. I only had to wait 1/2 hour for total relief. It was like a miracle. She said also that the Tums would not hurt me. Good to know. I know my nurse said I may have heartburn too but this was so helpful to call the doc and find out her perspective. ANyway, it worked for me. Everyone is different though....always good to check with doc.
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Hi all:
Well, another day in the ER. Electrolytes are back to normal as is my WBC which is good and they gave me a blood pressure medicine my IV. PVC's still jumping in my chest but not as bad. Hoping I don't have to go back again or they will probably ship me off in an ambulance to Vegas since our hospital out here is pretty small. Had an echo cardiogram but it came back fine which is a good thing!
This chemo (and only through #1) is kicking my butt!
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hey everyone,
sooooooooooooooooooooooooooo, (breathe) i went to my appt with the onco and bs today. i guess i am healing okay, as the bs only spent about 5 min with me. she removed the dressing and i see her in 6mths. i guess that is good.
then the IN YOUR FACE meeting with the onco:
4 rounds of ac for 8 weeks.
then 12 weeks of weekly taximol (is that the name? well it starts with a T)
any one have luck with the caps with my kind of treatment plan?thanks for helping
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Hi Arlene I Am sorry to hear your back in the ER. Just know that it will pass soon. This chemo is some funny stuff. I was fine for the last 10 days then serious fatigue and watery/itchy eyes and headache. I am due again in Monday for TX and I want to run away! I really hope you feel better soon!
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HI All - Just had #5 of 6 TCH. Funny in reading...I finally JUST realized that the post chemo days I really need to over the counter 24-hour pepcid. I took it today and felt completely normal all day long! Arlene, that may be a good option for you.
Also, i noticed that I keep grabbing my paddle brush - the flat wide one - I am getting a bit more cavalier as I get closer to the end. I do not seem to be shedding as much. I hope it lasts!
Love to you all!
Annie
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Ok - just re-read the pages - I MISSED the ER posts. I think I missed an entire page. So sorry that you are going through this all. It WILL get better! Hang in there!
Annie
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Welcome Determined. We really hate welcoming you here for obvious reasons but you are among friends and most of us here are using some type of cap. PCCs and Elastos. I'm using Elastos but too new to know how they are working but there are some good folks here who can tell you how they are working for them and most here are having success.
Nicole and Annie: Thanks for your encouragement. This is so discouraging! I have to stick with it though! Pepcid will definitely become my friend!
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Anniemomofthree and ArleneA: So sorry to hear about your tummies, but glad the pepcid is helping so quickly. Just curious, was Emend one of your pre-meds? It's one of the super-drugs for anti-nausea as well as heartburn (I believe). When the pharmacist was going through the meds with me on my first infusion day, and I learned that a possibl SE of Emend was hair thinning, I freaked. The pharmacist was skeptical of my whole cap gig, but -- thanks to wifi and my laptop -- we did a pubmed search and found that Emend had also been used in plain old surgical studies and there was no hair loss reported there. The pharmacist also began googling Penguin Cold Caps, found the trove of long-standing European medical research, and came back wanting to know how he could help purchase a freezer for me.
I used Emend with no ill results hair-wise (as did quite a few of my predecessors on this list); it's certainly a personal choice (and, in some cases, a financial one. My insurance happens to cover it, and I'm told it's quite expensive, several thousand dollars a pop!). Anyway, just curious. I've been surprised by the differences in our pre-med routines. For example, I did not get steroids, and I think I'm glad!
I'd love to see a study on cap use and Emend and hair loss. Perhaps after this first hurdle, FDA approval, we'll see studies which fine-tune things a bit.
ArleneA: sorry to hear a second day in ER! You sound strong and in good spirits despite it. Way to go!
Susan
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Thanks Susan. I don't know about strong as I am very weepy but since I never even get colds, this is especially tough on me and praying nothing is wrong with my heart. Doc did say I could continue working out and actually encouraged it so depending on how I feel tomorrow, I may jump on the treadmill. I'll find a nice yoga class too. Wish we had an Accupuncturist out here but Vegas is the closest one.
Emend: At first they were going to give it to me but decided on something else instead.
Again, I hope I make it through 5 more sessions. My girlfriend down in AZ got blood poisoning twice and they ended out stopping her chemo after 4 sessions.
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Ok - here is what happened to me.
TCH #1 - no premeds, no emend, no decadron. SICK AS A DOG!!!!!!!
Then I begged for Emend and steroids pre and post chemo...I have not had SEs, with the exception of a need for pepcid and ativan to sleep. That is it. My Dr. actually told me that I was "too sick" with my first chemo. I am two days out from TCH #5 and exercised, wrote a million thank yous, picked up dog poop (lots!!!), mulched my gardens, went through stuff for good will - and delivered it there as well. I LOVE STEROIDS!!!
Arlene - there is hope, it is called EMEND and possibly steroids. I am the person that did not take any pills, not even a multi-vitamin prior to this journey with BC. I am so thankful...the drugs have made a world of difference for me.
BTW, I have had hair loss where the caps do not fit at the nape of my neck. Otherwise, my hair has grown - yes grown - so much that I have to laugh. The gray is two inches long. I always show my friends the growth and it is weird to think that this should all be gone! I completely agree with the Emend studies...not linked to hair loss!
YOU WILL MAKE IT THROUGH THIS! No, I am not shouting that, well, maybe I am. But it is the steroids!
Annie
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Thanks again Annie. Perhaps I shall ask to be switched to Emend. You know after day 3 after chemo, I have not been on anything. No steroids, stomach pills, nothing. I have an appt on Monday for more bloodwork so we will see what she (onc) says.
Diagnosis: 1/1/2011, IDC, 1cm, Stage Ia, Grade 2, 0/2 nodes, ER+/PR+, HER2+
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Hi Everyone:
Arlene:
Definitely get Emend. With my insurance I pay $45 for the 3 pills, you take 1 the day of chemo and one on day 2 and 3. I have had no nausea and very little heartburn--only from food that caused it-not chemo. My friend, has lousy Ins. and has to pay $429 for the same 3 pills. I checked at the pharmacy and they said the same-$429 without Ins.
I get Benydril in the pre chemo drip and steroids-Decadron in pill form, 2 on the day before chemo-1 in AM and 1 in PM-infused the day of and in pills again on day 2 and 3. They hype you up and make you sleepless-my Onc. finally told me to not take the 2nd pill at night on day 2 and 3 and to only take 2 on day before. You have to take it that way, because it has to be eased on and off. You start with 4mg and go way up in infusion and the go down to 4mg on day 2 and 3. Other than pepping you up-up-up, they prevent the lungs from filling up with water-I think.
I have had 5 of 6 TCH-same as Annie- and SE's have not been too bad, but they do accumulate as you go forward. !st time none-- second time very minimal bad taste after 10 days--3rd time a lttle worse bad taste after a week or so and tingling and pins and needles in fingers and toes--4th time very bad taste after 4 or 5 days couldn't really eat anything without spicing it up and bad pins and needles-- 5th time lousy taste and icky feeling in mouth after 2 days. (Feels like tongue and teeth have a flim on them and they are rough as thought they had sand on them.) Much more tired and fatiqued too. Keep walking to combat fatique, but it is definitely harded this time. Hair is still there, but shed more each time. Almost no shedding for 1st 3 treatments, but much more for 4th and 5th, but not noticeable to others, and hair is definitely growing. The grey streaks are long and the style is a mess, but it is my own/!!!
My Onc. says to walk, walk , walk! It oxegenates your red blood cells and energizes you.
This whole thing is a trip down a blind alley-everyone reacts differently. Try to keep a positive attitude, it defitely helps. Just focus on the idea that this will get you well, grit your teeth and do it!!
Do not ignore and pain or weaknesses, always tell your Dr.
I usually never take much medication, but I found whatever they gave me works!!
Keep Positive/ Keep Smiling/Keep Laughing!!!
Nancy
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Hi All again:
I forgot to mention the worst thing of all!!!My skin, especially on my face and some on hands is drying out terribly--everyone always tells me what great skin I have, very moist and wrinkle free!! Well, no more-- each time my face got a little dryer. I keep using moisturizers, some even thick like grease, but to no avail. My face is so dry this week it feels like sandpaper. I am very upset, because it is starting to look wrinkled too. My onc. nurse said to get a hydrating facial. I checked 2 facial places in my area so far and the price was $150 at one and $200 at the other---outrageous!! I will try a different neighborhood, maybe it will be cheaper. She said she only pays $50 or $75 for hers. I tried steaming from a teapot and tenting over it with a towel, I put a shower cap over my hair, but was afraid the heat would damage my hair, so I quit after a few seconds.
I recall someone mentioning some brand of skin care products that are good for chemo. I will look back in the tips sent to me and see if I can get them.
Good luck to everyone!!
Nancy
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keeppositive: one of the best ways to hydrate your skin is internal, by consuming lots of water. I also recommend aloe vera -- very soothing and soft without oiliness. Hope this helps!
Susan
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