Cold Caps Users Past and Present, to Save Hair
Comments
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shipsgirl,
Congrats!!!! Wonderful!0 -
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oh it was cute too. This new tool bar is kicking my butt :-(
Anyways Congratulations Shipsgirl!0 -
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That's better!!0 -
Hi Shipsgirl,
Congratulations on completing your treatment! I am 56 days past my last (4th) A/C treatment, previously I had 4 Taxotere treatments (with Perjeta and Herceptin) and I'm still shedding significantly. I remember between my first and second A/C treatment I found your postings and you had pictures. I still have full coverage but it is extremely THIN. I'm thinking it is going all shed out, have you heard of that experience? It sounds like you kept all of your hair, did you? Okay, thanks for any information you can give.0 -
Had my first PET scan 2 weeks ago, now one year past initial diagnosis. All is clear of cancer...YEAH! Taking the Arimidex and have to go check out some gallstones they found in the PET. 4 month cycle with oncologist and 12 mos cycle for mammograms. All is good.
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Yeah Schoolmom!!! I have had gallstones for years. They act up once in a while and it is no fun! Tried to get them to piggy back that with other surgery but so far no luck with that :-(
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Schoolmom, congratulations on the good results. Did you have to talk your MO into giving you the PET scan? I've never had a scan, and my MO thinks it's unnecessary with my stage 1a, but...it would be reassuring to have (hopefully) good results.0 -
Congrats Schoolmom!! That is great news. I'm so happy for all of the success stories posted on this thread. My last chemo was May 9th and I have colored my hair and cut 4 inches. It feels great and so much thicker. I'll try to get a picture posted later on on this thread for you all to see.
For the newbies, this is doable and you will be happy you decided to do it. For those of you in the middle of it and shedding, It will stop. Mine slowed down and finally stopped after 4 months. It seems like it came out more afterwards than during treatment, but nobody knew it except immediate family. I have 2 inches of new growth and is coming in thick.
Keep capping and remember this is a temporary. Big cyber hugs to all of you!
Rhonda0 -
mc_in_nc - there is a key to abbreviations;
Go to All Topics at the top left of this page, click on: "Information and resources for new patients", once there
drop down to "Discussion Board Abbreviatin Key" click on it.
I found that having a separate window opened to it while reading through the forum was very helpful as I could just glance over when I hit an abbreviation I was not familiar with.
jc254 - I stopped shedding at 16 weeks. I have noticed that a number of other ladies have done the same thing. It literally stops overnight. One day you are shedding, the next day you notice that nothing slips out. I didn't lose another hair for months until normal shedding restarted.
mfm48 - Looking tired is part of the chemo game. My daughter mentioned it also, though she is much older than your's. Reassure her that you are doing well and that tiredness means the chemo is doing what it is supposed to be doing. I looked very drawn at times.
My husband is in politics and I had to go to political functions when I could barely stand up. I look back and can't believe I did it. There were certainly better days when I was feeling fairly normal and could do pretty much anything, but I do remember looking in the mirror sometimes and being surprised at how grey and unfamiliar I looked. I can reassure you that it does pass. Try not to let this temporary phase get your spirits down. Remind yourself that your daughter's friends and their parents have their off days too and probably look pretty awful when they are not feeling 100%. Most people will not either notice, or comment if they do. If you haven't told people what you are going through, most will write it off to your being sick - which you are.0 -
Rhonda and Hortense, thanks for the reassurance. I started Letrozole one month after my final chemo and was starting to think that was the reason for my continued shedding. I'll be at the 4 month mark in a couple of weeks so hopefully I'm near the end. Fortunately, I didn't lose much hair during chemo so it's not looking too bad. I have a theory that we're destined to lose a certain amount of hair while using cold caps. It either falls out quickly during treatment and then shedding stops or shedding is slow but steady during treatment and for a long period afterwards. Either way, you lose the same amount of hair, it's just how quickly the process takes. What do you think?0
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jc254 - I was told that we lose the oldest hairs when capping, because they are the weakest. That seems to have been what happened to me. I thought I had lost an enormous amount, but in the end I didn't. I always had full coverage and never felt I needed to supplement it. My hair did get very dry but it kept growing throughout chemo, as was evidenced by my long roots. I began trimming it halfway through chemo, just to tidy the ends. I'd take off roughly what had grown, but no more than 1/2" each time with four weeks in between trims.
About two months after I stopped chemo my hair began to regrow, even though I was still shedding. I had been looking very closely every day but couldn't see the new hairs until they were about 1/2" long as they were almost colorless and very thin in diameter to begin with. They soon thickened up and had color. They came in uniformly all over my head and for a while I struggled to keep the ones on top from standing up in cowlicks - but it was a nice sort of problem to have after everything I had been through and all the worry about possibly losing everything.
I lost most of my eyebrows and eyelashes - all but five lashes. I counted. - but they came back rather quickly. My eyelashes seemed to stop growing longer for a while and I thought that I might be left with stubby lashes, but that didn't happen. They are long and nice looking again.
I do suggest taking liquid silica for your hair. I take it everyday and many people have remarked about how thick and healthy my hair looks. In fact, my hair salon is recommending it to women now because they have been so impressed by how thickly my hair has grown in and how well it is doing. I use a brand called BioSil which is available on Amazon. Liquid silica has been clinically proven to thicken hair and is supposed to be good for skin and nails as well. I also take Biotin as I have heard it is good, but it is the liquid silica that has a proven track record.0 -
Hortense -
Did you take Biotin and BioSil at the same time? I've been taking Biotin for a year now just because I wanted long hair. Then I was diagnosed in June. I continue to take it during chemo, did you take it during chemo?
MC0 -
Hortense, thanks for the reassurance. I just can't imagine shedding this much every day and not having it all gone at some point, but so far no clumps or bald spots, so that's the endgame with the caps right now. What type of liquid silica are you using? I have a capsule but not sure its the right stuff. Anyone on here using Latisse? I honestly am not that vain, I just miss being able to feel like I have a good hair day or that my eye makeup brings out my eyes, or even being able to work out and feel fit - too afraid to "heat" up my head because it heats up so fast and every success of these caps appears to be in the cold category. God bless all of you on this board and may this all be a distant and uncomfortable memory very soon!0 -
mfm48 - I use a brand of liquid silica called BioSil which is available on Amazon. According to studies liquid silica is more quickly biologically available than dried which is probably what is in your capsule.
I put 5 drops of it into a small amount of juice twice a day. The juice is to mask its taste which to me is a bit fishy, though there may not be fish in it. My taste buds also make green tea taste fishy which is why I do not drink green tea even though it is supposed to be good for us.
mc_in_nc - I was not allowed to take liquid silica or Biotin during chemo, but was able to start both of them afterwards. Talk to your doctor about them. I believe Penguin Cold Caps encourages people to take silica during treatment. My doctor just felt I should wait, so I did.0 -
Re: silica. Talked to my MO this morning. She said there is just no research on interactions so she can't say yes or no. I'll wait till chemo is over. Not a big deal.0 -
Hello friends! Took a few days off to "be normal". This thread has be hopping. Thank you to everyone for your well wishes. It really feels really great to be post-treatment.
So far my skin is holding up fantastically. A blister opened but seems to be healing up well. Not really breaking down, just a little rubbing on my sportsbra I think. It happened when I worked on Saturday and again while I was volunteering for the Run for the Cure. Guess I should take it a little easier. I have had big fatigue too.
lkmelby - I know of someone who nearly shed out at the end and had to use wigs. I thought I might but it didn't happen. My shedding was worse on Taxol (which I did after AC) but it seemed to nearly stop towards the end of the second week each cycle. After the last infusion, it did the same thing and pretty well all shedding was over by the 3rd week pfc.
I believe Curly thought she might but didn't in the end also. At this point, you have done everything you can. We know that ACT is very tough and has a lower success rate. You've kept your hair until this stage and I'm praying your shedding stops. But meanwhile, the new hair is growing and even if you do shed out, it will be coming back in very soon. That is one of the great things about cold caps. Just when I thought my hair was too thin, it was growing back. Either way, you are waaaay ahead of the game. Just keep doing what you know to do.
Schoolmom - congratulations!! those are the words we all want to hear. You made it!!!0 -
Hi there,
I am new to the site and just signed up last night. I just had my surgery 2 1/2 weeks ago to remove tumor, so in recovery for a few more weeks before treatments. I am from Washington State, I am still in the "Shock" phase of it all actually. This past weekend was the best I have had since this journey started first part of August. I have been intrigued by the board of comments and seeing your post and referencing our Lord I am certain it was meant for me. I was actually wondering if there were posts from others who believe they are on this journey with God. I love him too and I don't know how I could do this without Him.
I am seeing so many things about Cold Caps and this is awesome, I had not heard of this before. They are telling me that I should start treatment probably first week in November so I still have some time. I was going to order me a wig online and some hats or something to prepare for this next phase. Although I believe in our God I am still very anxious about all of this and the unknown of course.
I work for a very busy company and I am worried that this will make a huge impact to my work as I hear of chemo brain and all the other side effects from treatment. So many things going through my mind and no answers. I have a meeting in a couple of weeks at the Seattle Cancer Care Alliance to get second opinion so I am pelased with that option.
I would like to know how to learn where to find the abreviations so I know what most are talking about, maybe someone can guide me. Thanks any support or encouragement welcome.
Lucy - SpiritBlessings0 -
HI Lucy,
Welcome! Too bad you are here like the rest of us.
Cold caps are great! Once you know more about your diagnosis and treatment plan you can start plotting out the particulars and look into them some more.
Chemo doesn't have to interrupt your work. It depends what cocktail you do and how it hits you. I did TC and had few SE's and didn't get sick once or spend a day in bed. Do I ever want to do it again, heck NO. It was OK though considering what it is.
I am cutting and pasting from Hortense above about the abbreviations:
there is a key to abbreviations;
Go to All Topics at the top left of this page, click on: "Information and resources for new patients", once there
drop down to "Discussion Board Abbreviatin Key" click on it.
I found that having a separate window opened to it while reading through the forum was very helpful as I could just glance over when I hit an abbreviation I was not familiar with.
Ok Back to me....there is a lady on here that is in the Seattle area and has a website www.BoobsofSteel.com You might find it interesting because she talks about different doctors and facilities in your area. Her husband writes from his perspective too which is cool. If you start back at the beginning of the site, February I think, she goes through the different places and tests she went through and about getting her second opinion, etc... I don't know but maybe it would help you out with some of the unknown. Her sign in at BCO here is TinaHoff.
Best of luck to you. Stop back in and the great ladies here can answer any cold capping questions you might have once you know which direction your path is taking you.
Lynne0 -
It's been pretty quiet here. How's everyone doing?0
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Still Shedding, but it's all good! 8/33 rads done. Thinking about getting a cut soon. Bottom lashes fell out at 7 1/2 weeks PFC, WTH is up with that! Eyebrows are getting all fuzzy and wish they wouldn't..LOL It grows where you don't want like gang busters and crawls in where you do want it!!
How are you doing jc???0 -
Hello All! I had my second round of T/C yesterday. I'm in the clinical trial for the Dignicap. Around day 19 I started shedding like crazy, and it was quite traumatizing. Yesterday, my MO said that I had lost about 20% (which is more than most patients had lost at this point). I hope it starts to slow down, my normal hair is thin to medium so I don't have a lot of room for more shedding . Keeping my spirits up and staying hopeful! How's everyone doing with their capping experience?
Melissa0 -
Hello again. Looking for a good spray leave- conditioner. Has anyone tried ION?
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mc_in_nc - About day 19 is when most people start shedding. I was told to expect it to start between the 18th - and 24th day, which it did. It started slowly, then picked up. It was worst after my second T/C treatment up until my third, then it slowed down. I thought I was losing a lot more than I actually did, and a few shampoos after that second treatment were traumatizing because I lost a lot. However, you can see by my avatar that I ended up with full coverage as the picture was taken a month after my 4th and last infusion.
I am sorry that I cannot answer your question about Ion as I have never seen it before. Perhaps someone else has and will chime in soon
Have faith that you will keep most of your hair, and good luck to you!0 -
Hang in there, MC, you are a true pioneer and I am sending you all positive thoughts that you will have good success with the dignicap. I, too, shed most between rounds 2-3 and then it tapered off but kept at that pace until about 5 months pfc. Then, like many others have said, one day it just stopped. I think losing 20% at the stage you are at is great - most non cap users would have lost nearly everything at that point. Keep up the good fight!
FYI all on lashes and brows...I thinned out during chemo but things grew back quickly. Then just about at the 6 month pfc mark, thinned out again. I'd been warned about this but kind of forgot and had stopped using the Latisse. I'm now back on it and I think the thinning is over now, small lashes growing back in the sparse areas. YEESH!
On a positive note, I have made an appointment to get my hair highlighted and colored. It will be 8 months pfc when I go, so I'm thinking all will turn out fine.
Happy capping!0 -
mc, hang in there. The protocol with the dignicap is different than penguin cold caps so I don't have any helpful advice. Hopefully this is just the big shed that some experience and it will level off. I haven't tried that particular leave in treatment for frizz but I have tried a few others and none work very well for me. I'm still not blow drying and my hair is naturally pretty frizzy so if it works, please let me know.
4sewwhat, I didn't lose my brows or lashes but they did thin a lot. I've heard that they grow back fast. I hope you're getting through radiation ok. My life is slowly getting back to normal although my energy level is still pretty low. That's my worst complaint (other than this darn shedding) so I feel pretty lucky.0 -
mc - I am at Day 28, finished my 2nd round of TC last Thursday. Had a LOT of shedding about 10 days ago. Now its not so much. But I am doing NOTHING to my hair. I wash it every 6 days or so, I just can't make it a week. Comb it once in the a.m. once in the pm. And that's it. My husband says it doesn't look like I've lost any. I can see some come out every day. But I can also see dark roots, which means the hair I do have is still growing. Its amazing how much more time i have in my morning routine now that I'm not "doing" my hair!0 -
mfm48 - I hope that's the same case for me. I do the same comb once in morning and once at night. Wash once per week as I'm afraid to touch it right now!
Thanks everyone for the advice and positive thoughts! You're all such inspirations for new cold cap users. I've learned so much from this board which eased the 'what ifs' of capping.
Good night0 -
It's been 4 years this week since I looked into Penguin Coldcaps. I am so glad I used them as they helped me feel like my regular self and it was one part of cancer that I could somewhat control.
Hugs to all you ladies...
Ang0
