Cold Caps Users Past and Present, to Save Hair
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Jason makes aluminum free deoderant. Love their products.
I just went for my CT planning for rads. I"m now the proud owner of 2 tattoos. lol
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Natures Gate deodorant works for me. I could no longer find it in stores so I started ordering from amazon. As far as hot flashes...mine would not go away so my MO put me on Effexor. It helps a lot. It also reduces anxiety which is also welcomed!
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LeslieVilla, I posted this same question a year or two ago. I have tried 9 or 10 different alum. free deodorants and none of them worked for me. I now use a combination of Nauturally Fresh Crystal, sold at walmart and Clean with cotton vantage, sold at Amazon. Both are alum. free and they work pretty well.
mdg, my hot flashes have never gone away either and my doctor mentioned trying Effexor but I never did. Maybe I will give it a try if it worked for you. How long were you on it before it worked?
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I don't remember how long it took for flashes to deminish but it was not long. I can tell you the first few weeks on it were a bit rough though. I had crazy nightmarish dreams and did not sleep well. Once my body got use to it, no problems. Flashes are less frequent and more mild. I do notice that if I go off my regular healthy eating and have any kind of sugar -my hot flashes are worse. I have come to the assumption that diet also matters.
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As an FYI - my last chemo was 7/2/13 and on 7/3/13 I brought my cold caps back to my rep in St. Paul. She immediately sent a note to their home office telling them the caps were returned in good condition, all was accounted for and to refund my damage deposit. She assured me this would be taken right away and that there would be no more monthly charges.
Today I was reviewing my credit card charges and see that another months rental was charged for August and I have yet to receive my damage deposit refunded to my card. So please stay on top of this when you all get to this point. I've heard others have encountered the same slow bookkeeping issues and it's unfortunate as CC serve a wonderful purpose when they work but having to fight for refunds etc tarnishes their reputation and makes me question their business practices.
I know this last statement may seem harsh given that it's only been a month, but my rep assured me she notified the company immediately and was assured the charges would be stopped immediately, which clearly was not the case. I wonder how many users haven't checked their credit card statements and have paid for something they didn't need.
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I asked Geralyn for a statement so that I'd know what I paid (I'm going to at least try to claim it on insurance). I followed up after 2 weeks and then got this from a Nicola Hadlow:
I have been passed your email by Geralyn, and been asked to deal with this for you.
The caps were logged by the depot on 1st August 2013, and our accounts department has received notification of this.
Once the caps have been returned and logged it takes an average of 28 days for the account to be fully finalised and funds owing returned to each client.
Personally, I think it's cheeky of them to keep my deposit an extra 28 days. But at least I"ve heard something.
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So far it's been 41 days since all the papers were signed, caps returned and acknowledged so I'll be interested in seeing how much longer they keep my money and refund the August rental. Thanks for your input shipsgirl. I do hope everyone holds them accountable and no one is taken advantage of.
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How do they refund your deposit i.e., contact your credit card company, send a check?
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Seems like my deposit was applied to the last bill so I had a partial charge which was less as it was the 3rd month.
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FYI. I colored with permanent color yesterday. Finished chemo Jan 7. I used olia by garnier. 60% natural oils. Ammonia free. Good conditioning as well as good coverage. Glad to have 1 color again.
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My credit card was refunded the deposit. I recall it took over a month, but no problems with the refund.
I just made sure I received an email confirmation from Geralyn as to when the caps were received back, so that I would have documentation if I needed it. I check my credit card statement closely every month, so I was ready to dispute it if they charged me again. They did not, and I did receive my refund, but I was ready for a fight. I don't trust any companies to not overbill, etc.
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As wonderful as the caps are, I hope Penguin is "aquired" by a larger company with a better infratructure. I need an invoice to send to my insurance company and I was told the same thing- 28 days- for the paperwork. Personally, I think that is outrageous. I also find the customer service to be lacking- Geralyn is great but the whole system, IMHO, needs a better structure.
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YAY, schoolmom! I'm sure it is great to have your color back
I'm going to try and hold off until October or early Nov, which will be around 7-8 months. I the meantime, just getting trims to get it in good shape as possible for the eventual highlights and color.Re: the billing/refund issues. I also had a problem getting a reply and finally reached out to Frank in desparation and someone got in touch within a day. What I found was that the third month was a lesser amount - they had applied the deposit against the partial days of the month I had the caps. I hadn't noticed that on the bill since it wasn't a big enough change in the total but it was all correct in the end...I just wish I didn't have to send several emails and go to the top for what could have been headed off by PCC just responding to the first email I sent. Yeesh!
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This is the response I received from Nicola Hadlow when I queried the 28 days...
Dear Judith,
It isn’t Penguin that takes 28 days, it’s the Paypal system that we process through.
It usually is much quicker than 28 days however we give that as an approximate time scale.
She responded promptly and I can appreciate her position. I admit that I was "expecting" difficulties because some others have had issues. I see that I wasn't being fair. It's good to be thorough, but I regret expecting the worst. I achnowledge this to her and mentioned that Penguin didn't have the best reputation regarding their accounting.
I'm sure they could be set up better, but this is the system they've devised for now. Hopefully, the demand for caps will continue to grow and they'll see the need for a more efficient way of handling North American accounts.
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I shipped my caps back last week and today was billed $455.00 for the 4th month! Per my agreement with Geralyn, I was supossed to be billed only $100 for the the 4th month if I kept the caps! And even the $100. Was to be prorated. This is extremely disturbing. My rep says she doesn't keep records but contact the accounts dept. as soon as clinical trials are over next treat Digitana will be FDA approved and penquin will not be the option most patients choose, guess they know their time is limited to cash in? How sad!
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SusieQ how are u doing with rads? Looks like ill be needing rads too wondering what to expect
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I'm on the rad train too. Starting in about 2 weeks. I"m quite scared, though Sciencegal has just finished and said it wasn't too bad. Just did my CT planning and got my tattoo dots yesterday.
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Shipsgirl, I start rad in 2 weeks too. Got fitting and tattoo today. I ordered some aloe lotion on Amazon, but other than that I am not doing much. 33 sessions. I may get my hair done at the end to celebrate!
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tmb - I have been reading the Summer 2013 Rads discussion. Strange but most of the things the women are using there, are not recommended by the British Columbia Cancer Agency. They say don't use anything oil, aloe is not proven to make a difference etc. I don't know what to do. lol
Getting your hair done is a good way to celebrate. Saw my GP today and she was so impressed. She's been such a cheerleader for cold caps. Mine was so sparse after ACT but is already filling in the scalp so it looks much fuller. She's impressed.
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All aboard the rads train.... I'll be there too. Has anyone done rads 6 weeks pfc vs 4 weeks?
When I signed my consent forms I noticed that some hair loss is a possible side effect. And for some strange reason I just started laughing to myself. I'm sure the doc thought I was bonkers.0 -
Hi ladies on the "rad train" or about to start. I finished 30 sessions on Monday. The 6 weeks flew by and I found it very easy. My skin is pink but that didn't start until around week 3. I used Eucerin creme (not the lotion) morning and night until redness appeared. After that I used it in the morning and used Aquaphor at night. (all can be found at a drugstore). My doctor, nurses, and technicians all said my skin looks great. Just remember to put lotion ALL OVER that area. I didn't realize how far into my arm pit I should have gone and that area is more red.
I've had no pain or fatigue and it is way easier/less stressful than chemo! I've suffered no hair loss - in fact my hair started growing like crazy in all places I had lost or thinned 4 weeks into radiation. Maybe they mean hair loss at the site of radiation? I imagine I may not have to shave my left arm pit ever again. (silver lining!!) I was also determined to exercise to combat fatigue and never felt tired at any point.
The hardest part was going there daily. But I grew to love everyone there and on Tuesday when I didn't have to go it felt weird!!
Hope that helps - happy to answer any other questions!0 -
Oh and kaydee, I finished chemo 6/6 and started radiation 7/1. Hope that helps!
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Hi passengers for the rads train
! Like Susy, I also found rads to be very easy, no SEs whatsoever...my skin never changed and my RO was very happy. I used the lotion they gave me a couple of times a day and the Aquaphor at night, very greasy but it works. Before I started chemo my lymphadema therapist told me the best thing I could do during chemo and rads was to stay as hydrated as possible inside and out. Every day I aimed to drink a gallon of water and I put lotion on all over morning and night. I had an easy time with chemo, not sure how much a factor this was but I think for sure it played a big part in keeping my skin in good shape during radiation. Good luck, I hope you all sail through!
P.s. I didn't want the tattoo on my chest so they just marked it with a Sharpie and covered it with a clear tape sticker...worked fine.0 -
I did 6 weeks after chemo. Hair loss is associated with head tumors I think. I used aloe force 2 times daily in beginning and 3 times last 2 weeks. Mild pinking. Got pneumonia when I started Cuz I went back to work with pk kids after chemo. I was exhausted 4 about 2 months until 2 weeks after rads end. Anybody in texas I will send my extra bottle of aloe force for free. Pm me.
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For those curious about radiation:
I found radiation was easy and didn't hurt. I was given it for six weeks. Two directions each day for five weeks, then during the sixth and final week I was given a daily "boost", a single burst aimed into the surgical site, the tumor bed. My regular sessions lasted about ten minutes, most of which was getting me settled into a form that had been molded for me ahead of time, getting the machine positioned, then repositioning it for the second shot.
I was given three tiny, light tattoos that look as if a ball point pen was lightly touched to my skin. One is low between my breasts, the other two are well away from my breast - one is several inches below it and the other out on my side, level with my breast. They didn't hurt and are permanent. I hardly ever notice them. My surgical site was loosely circled with Sharpie pen in black and the marking was renewed regularly. I was told not to wash it off. It faded because of the lotion, but they'd fix it each day.
I was told to use Aquafor or natural Calendula oil and used both. I got Weleeda Calendula Oil at Target in its natural products section where the nurse sent me. I was also told not to wear any underclothing that might put stress on the radiated skin, so I went braless. Some women find a tank-top with a built in bra works, but it didn't for me.
Anyone using Aquafor please note that it grease stains everything so be sure to wear items you won't mind tossing afterwards. Nothing gets it out, not even an oxyclean paste soaked overnight and repeated several times
I ended up using the same t-shirts each day, washed of course. If you must use it as per doctors orders, try wearing a tank top against your skin to keep it away from whatever you wear on top.My skin slowly darkened in the rectangular area covered by my radiation, which was about 12" x 18", but it didn't bother me. I did get a bit tender under my breast in the fold and along the outside edge during the last week and a half and developed small blisters. I had to wear a nonstick gauze pad to protect the skin. The pad simply stuck to my Aquafor
and stayed held in place by my t-shirt which I tucked into my pants. After rads, keep moisturizing daily for months as the drying effects are long lasting. If I stopped, my breast felt and looked like wrinkled cardboard. A top rads doctor I spoke to about it after I got concerned told me to keep using moisturizer twice a day. Now, 3/4 of a year afterwards I do it only once a day. I can see a difference if I skip a day or two.
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susiQ is the tissue on your radiated breast thicker/tighter? noticably different other than pink from Rads?
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LeslieVilla - Thicker tighter is what I meant by feeling like cardboard. It is exactly what happened to me long after radiation ended and why the doctor told me I needed to keep moisturizing twice daily.
Cold Cap user - kept my hair
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Leathery is the way I would describe mine. The skin itself looks good, but I moisturize daily. It feels leathery inside to me - my pec muscle is tighter. It isn't just your skin that gets radiated, it's all the tissue underneath, too.
But just looking at my skin about a year post rads you wouldn't be able to tell I had ever had rads. It's how it feels inside to me.
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thanks for sharing that ladies. Guess you either you get a leather tit or reptilian one with mastectomy. Either way I'm thankful to be alive. I'll get a new one when i get to heaven
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SusieQ and Hope - thanks for the positive info. I have read all kinds of horror stories and it made me really scared. I'm doing 30 treatments and was concerned but now I know I can expect minimal se's. That is sooo helpful.
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