Cold Caps Users Past and Present, to Save Hair
Comments
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makingway - that is just so wrong. Cannot believe it! I wonder if Frank knows. It just doesn't sound right - sounds like someone taking advantage of their position.
JeniferE - yes, I had neutropenia with each round. It was very severe and dangerous the first round; essentially was told to not leave the house for several days if I could avoid it. After that I was put on Neupogen shots after each infusion to help keep my numbers up. Even then, they still dropped somewhat.
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Thank you all for your kind thoughts and prayers! I made it. Long day. First our ice came in huge blocks - like 20lb blocks. So we had to crush it all with a hammer and try to layer the caps. We just couldn't get it right between filling bags with ice and cap containers. Until steely we had to use freezer bags for the caps. Big mess. The caps were too cold so we had to take them out 20 minutes before ans really knead them for awhile. Next time we will order pellets and get directions how to use them with containers.
Didn't start infusion until after 12 - not even sure when but didn't finish until 4:30. I talked to my doctor and she said I could do herceptin last next time just not for the first loading dose. Then there was a mix up and the nurse thought that I would do herceptin last the first time. So without taking any Tylenol, Ativan or anything, we strapped on the cap. It was cold but not unbearable. Ten minutes into wearing my cap, the nurse comes in and said she made a mistake and I would be getting the herceptin before chemo. She didn't get it that I wouldn't need to sit there with the cap for herceptin so she kept saying you're ok with the cap. I looked at my husband and silently screamed "get this off of me!" So we had a little bit of a fire drill rushing to put them on when we didn't need to at all.
When we did start capping, it was fine. We left the hospital at 6 and did two cap changes on the side of the road because of traffic. Wasn't too bad. I took the last one off at 8:30.
Tip from Geralyn was to layer cheese cloth on your head before strapping. Didn't get my hair caught in the Velcro but towards the end, the cheesecloth was so frayed that it was getting in the way.
No SEs. Well, none yet. I went to bed exhausted but the steroids ruined me the night before so I had no sleep. I had to take an Ativan after my second dose of steroids bc I was out of my mind. The Ativan didn't help at all. Dr said no oral steroids for me next week - just in my premeds. Yeah! I fasted 45 hours before chemo and will break my fast probably before 4:30. I don't think I can hold out until 4:30. Actually I'm having decaf with coffemate now. Coffemate is not food so I think I can at least hold out for a couple more hours. I think it helped me significantly because I should be having some sort of SE to report but nope, nada, niente...maybe later but right now I'm flushing out with water and will go exercise after getting the munchkin up and dressed.
Glad to hear everyone is doing well. Yeah hockey cat! Better view than mine in NJ.
One more thing - I came home with a huge matted mess underneath near my nape. I tried cornstarch to no avail. Maybe I was doing it wrong. Need to know the correct way to get it out for next time. Hortense? Help?
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Thanks Jennliza and lyndawerner---I think I am just scared of the whole surgery in general, b/c I'v never even had a broken bone and the only time I was in the hospital was for childbirth. The whole thing just scares me b/c I am an active person and don;t want to be out of commission. I guess I do have to look at the bigger picture and know that this will pass and life we go on after all of this. I know all of the info I need to know, I just have to wrap my head around it all. Sorry to go off the cold cap topic……
My oncologist whom I love, actually had a bilateral mastectomy for bc that she herself had about 6 years ago. I don't know her whole story, but she told me she's around it all day everyday and that's what she wanted to do.
Thanks for listening girls and for your input! It means a lot.
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ciaogina - my doctors at Sloan advised me against a masectomy. Said my rate of reoccurrence would change from 1-2% to 3-4% so it wasn't worth it for me to undergo the procedure. With that said, I haven't had the BRCA testing yet. If that comes back positive then maybe I'll change my mind. It's a huge operation. I was totally willing to do the BMX but my dr said no. My breast looks the same but with a little scar on the side from the lumpectomy. Maybe because I am a 32D and the lump was high up so it's not noticeable. Maybe if it was noticeable I would have made a different choice. My surgeon, Dr. Capko out of Sloan in Basking Ridge was AMAZING. If you want a second opinion, check her out.
For me, I was all about f*%# the tatas! take them off! save my hair! That should be our cold cap slogan - lol.
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9 weeks PFC and my eyebrows started growing back with a vengeance over the past week. It is amazing how fast they can grow.
The hair on my sides above the ears is about an inch long now (it stated growing back before my last chemo dose), though my sideburns took longer to grow in and they are more like 1/3". I am not seeing fill-in growth on top yet, other than a patch near my part where I had lost a bunch, it was the first part of my head that started to go gray when I was 18, go figure.
I can't wait to color. I might test due a couple sections with natural dye that I've used before to see what happens. It is a powder you mix with hot water, mix into a paste and leave on for a couple hours before rinsing off. I will report back if I do.
My hair doesn't look great but I never was bald and no one knew I had treatment if I didn't tell them. I do recommend investing in some good cosmetics to help make up for the chemo making you look washed out and to enhance your features. The Anastasia eyebrow line available at Sephora has been awesome. I also use a liquid eyeliner, using one shade lighter (dark brown instead if black with my dark hair) seems to make it a bit softer and not as edgy for daytime. A bit of bronzer and blush plus a good lip color and I was getting compliments. Hehe
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Good morning, ciaogina.
I am SCARED to death about having a mastectomy too, and I think we have every reason to be.
Like you, I have only had one surgery in my entire life and I am 49. It was a C-section and
I was in so much pain. I didn't even want to move. But, other women who had c-sections were
out strolling the halls. Apparently, I am a whimp and have a low pain tolerance.
So, you are not alone!
Hopefully, my Dr. will be generous with the pain meds. lol
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Hi, just a quick note in case anyone noticed or cares..I had to change my userid.
I didn't realize I was breaking a rule by using the other userid.
Thanks again mods for letting me know :-)
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Thank you for your help, Jennliza, this is exactly what I need. I will order it as soon I finish this post.
For my tomorrow chemo session, I sewed two straps hoping it will fit with the cap.
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hi fellow cappers,
So I have my 3rd chemo tomorrow (yay! Only one more after that!) and I've noticed that my scalp has gotten really flaky. Like REALLY flaky (big big bits of scalp falling off - better than my HAIR falling off for sure, but, ew).
I've never had dandruff before - so not sure if this is a side effect of chemo, capping or just infrequent hair washing.
Curious if anyone else has had similar, and has ideas what to do about it w/o messing up the penguin regime?
Tx in advance!
Rain
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Thanks for sharing DanielaD! I am a 36 B, and while my surgeon says either surgery is fine with her, she did say that my breasts are on the smaller side and that I may have some deformity especially after radiation, so I am leaning towards the mastectomy, but not only for that reason. The MRI saw another spot in the same great but in a totally different place than the original tumors. the spot however went away after a few round of chemo, so if I had a lumpectomy, they will not be able to know where that other spot was, and therefore, I'd be a nervous wreck wondering if that spot will come back. I do not want to go throughout his again!
I do love your new slogan though! And glad you made it throughou today! Yay--one down! Get some rest over the next few days! Thinking of you.
JoeyJames Mom--Thanks. I did send you a private msg. I am really nervous about just having surgery. Glad I'm not alone.
making way--thanks for the article. i'm leaning towards mastectomy only b/c of the reasons above. Just so nerve wracking trying to decide.
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Raindew - most likely you have cradle cap. Several of us on here have had that (myself included). I think it is due to not washing the hair enough.
I mixed about 1 tsp of apple cider vinegar into my shampoo and that helped significantly. This was upon the advise from my PCC rep.
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hope49 - glad I made someone smile today
Raindew- do an apple cider vinegar water rinse after you wash or whenever. Or add a few drops to your shampoo. Hortense had a post about using olive oil awhile back. Not sure though. I would be afraid of the rubbing to get the dry skin off. I used coconut oil o. My babies dry scalp and had to rub it in a bit.
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My heart goes out to those of you trying to decide on MX vs lumpectomy. It was a very difficult decision for me. My only advise is to try to quiet your mind and feel with your gut what is the best decision for you personally.
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Hi, again ciaogina.
Do you think this is why your MO wants/thinks you should go with a mastectomy?
The MRI saw another spot in the same great but in a totally different place than the original tumors. the spot however went away after a few round of chemo.
I am sorry you need to worry about this too.
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Just read this article on a trial where radiation is given once a week for 5-6 weeks instead of the daily standard. I imagine this will likely result in a new standard of protocol, mostly because scheduling patients would be easier for staff. It would also be more convenient for the patient and half the cost.
http://www.cbsnews.com/news/breast-cancer-patients-may-have-easier-treatment-option/
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For those deciding on surgical options.....just make the right decision for you. There are pluses and minuses to each method. I can only tell you why I chose BMX. My reasons were I was in good health, didn't care about the breasts so much (save the hair!), my son was only 4 when I was dx so I wanted to be very aggressive. I also knew that I am a worry type person. If the cancer came back I would never be able to look my son in the eyes.....I knew I would have major regrets. That is just my personality. I did have a lumpectomy first (because my surgeon was doing sentinel node removal and the tumor was right there so he just removed it) before my BMX. I was small before surgery...maybe an A+ or B- cup size. After the lumpectomy other than the scar, there was no real different look to my breast. I did not have radiation though so I am sure that would change things. I am not sorry I had BMX. I do miss the sensation of real breasts/nipples though when Dh and I are intimate. That is my only real concern at times. My PS was great....my foobs look very real.0 -
makingway, that's really interesting. I had the shortened "Canadian" radiation protocol. My radiologist strongly suggested financial consideration as one of the main reasons the US has been slow to adopt radiation protocols already proven effective in other countries. Daily radiation treatments are a huge revenue stream for a lot of facilities. Weekly radiation treatments would be a huge and welcome change if ever widely adopted.
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Jumping in on lumpectomy versus masectomy ... I had a lumpectomy and a great breast surgeon. The only remaining sign of my surgery is a faint pink straight line. No divots, no noticeable difference in size between my two breasts and no change from radiation. I have a pretty small chest- B cup. Athough my cancer was small, he took out a lot of extra tissue for various reasons. Don't want anyone to assume the cosmetic result of a lumpectomy can't be excellent. A good breast surgeon should be able to tell you in advance whether he/she will be able to achieve a good cosmetic result. Obviously that's not the only consideration when making such a big decision.... I know if my cancer comes back, mx will be necessary. I am comfortable with my decision even though it means continued mammograms/MRI's (but I am not a worry wart by nature).
Edited to add: I went into surgery thinking I had DCIS only, but the post surgery pathology showed surprise IDC as well. Because of this, I kind of avoided the whole internal struggle over which surgery was best for me. With DCIS, a lumpectomy seemed the most logical choice and I never seriously considered gong back for mx surgery after the IDC diagnosis.
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I had no option but to have an MX b/c of small breast and large amount (6 cm) of DCIS. Did the other side b/c my plastic surgeon told me it would be easier to match the recon and also b/c I am a worrier. It worked out good for me b/c they actually found I had bilateral breast cancer (very small amount of DCIS on my "good" side) that had not been seen on any imaging.
I did have nipple sparing on my "good" side. I highly recommend it if you are a candidate. No sensation, but it looks amazing. You cannot tell I had recon on my R side - I fool the docs all the time.
Now lefty...that's a whole other long story. Had to have radiation after MX which is very unusual, and it totally whacked my reconstruction. I have a lot of radiation fibrosis. I use a prosthesis on that side.
Oh well, I'm alive! 0 -
dancetrancer-I thought you were one of the lucky ones that had the microfat grafting by Dr. Khouri?
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Lucky until I had radiation. I had two fat graftings - then radiated on one side. I had one fat grafting after radiation, but it takes multiple fat graftings AFTER radiation to heal the damage and start to see results from reconstruction. Usually a minimum of 3 grafts after rads to heal damage, then 2 or more to start building volume. The first 3 usually lose volume but the fat cells help heal the fibrosis and renew the tissue.
Problem is - limited fat stores in my case. I only have enough for one more grafting. Trying to decide if it is worth all the trauma of surgery, down time, Brava use, etc.
My fat grafting result on my non-rads side is great.
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That's terrible! You'd think after all that you've had to go through the results would be better. Do you think they would have if the grafting had been done after radiation instead of prior?
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hi ladies,
First, THANK YOU for the apple cider vinegar suggestion - I will definitely do that when I can wash again after today's chemo (in the chair now)
Happy to share my surgery story too. It was easy for me - when all my genetic testing came back negative the genetic counselor and BS both said 'well, we haven't found everything yet' :-) my family history is awful. Combined with dense breasts, fibrous breast, 1.5cm IDC which went misdiagnosed as a cyst for a year, and generally being a neurotic worrier I am was happy to be aggressive. Probably helped that I didn't have particularly erogenous breasts anyhow and they weren't my finest physical feature. Finally I preferred to avoid rads if possible.
Because of the placement of the IDC (upper inner) I was able to do nipple sparing both sides. I still have TEs, but can see that with squishes they will look very natural.
No good or bad 'answers' in my view on this one. It's just hard and very personal decision. For me the chemo decision was even harder. I do wish folks would be a bit more understanding tho - we don't take these decisions lightly....
Thanks cappers!! You are all amazing!!
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sorry to go off the lumpectomy vs. masectomy topic but I have question about hair powder. I'm a huge fan of Rita Hazan root concealer but with that said, it's super expensive and I would reserve that for special occasions. My roots are already out of control and I was considering one of those powder gray concealers like Jonathan Awake Root Powder. It will cover more area and maybe tone down the grease pit that is my hair right now. I know there was talk of no dry shampoo being allowed although I'm not sure why. Then I did see someone say they used Joan River's (RIP) fill in powder, but that goes on the scalp. So now I'm confused. Color mark and touchback marker are great for the hair line and part, but it's not going to cut it for me. My hair grows super fast normally. If it keeps growing while taxol and cold caps like everyone says, then I'm in trouble. Can we use colored powder touch up for gray or no?
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That's hard to say makingway, but I doubt it. I cannot think of one person who has had fat grafting after radiation (no grafting prior) who has needed less than 5 surgeries to achieve a good result. It's not an easy path, but if you aren't willing to risk implants after rads nor flap procedures, it is your only option. And it does heal rads damage - it just takes lots of procedures and a good supply of fat. Honestly, the options for recon after rads are all tough, IMO. That's just the way the chips fall sometimes.
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Wow, I didn't realize it took that many operations! I thought 3 would yield optimum results...Sounds like you'd have to be overweight to meet a challenge of 5 fat grafting procedures. I wonder if the radiation protocol changed it would yield better outcomes/less procedures.
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3 if no radiation. 5 if radiation. These are averages based upon what I have seen following other's stories over the past 3 years. I've seen some have more than 5 if they are complicated post-radiation cases.
I do have to say the body sculpting is an amazing side benefit!
Less radiation would help, for sure. I suspect my RO zapped me extra hard. I had multiple close margins postMX because my DCIS was so close to the skin and chest wall, Very little room for error on the surgeon's part. I didn't have much fat between my breast tissue and skin/pec tissue. Being thin (my upper body - I was a pear shape before fat grafting, so I did have some fat to work with!) can sometimes make for a more complicated recon I guess.
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DaniellaD - I've been using Joan River's fill in powder, but only to cover bald spots. It's not meant to cover gray, however. It works very well to cover bald spots - my husband has become quite adept at applying it to the back of my head and is very proud of his work :-)
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Daniela, I bought the Joan Rivers powder but I never had any grey roots to cover so I never used it. I'd be happy to send it to you if you would like to give it a try, just PM me with your address. The color is called blonde but it's a darkish brown. My hair is dark brown with blonde highlights.
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