Starting chemo Thursday, May 31 - June Group?
Comments
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pam - just to clarify - the icing is for nails only - most likely won't help with neuropathy - take the L-Glutamine, Acetyl L-Carnitine and B6 for neuropathy, and cross your fingers that you don't get it. Neuropathy is a neurological condition that can't really be prevented with regional icing. The icing doesn't require much energy - I brought 4 bags of frozen peas in a cooler, wore thin socks and laid thebag of peas over the toes on each foot 10-15 minutes prior to the start of the Taxotere. Put the other two bags of peas on top of my sweatshirt in my lap and dug my nails in like a claw. I had a thermal cup (Tervis tumbler) with ice chips on the tray next to me and just tried to hold the ice in my mouth until it melted. When it did, I took my hand out of the peas and got some more ice out of the cup. I did this until 10-15 minutes after the infusion was done. I also applied clear polish for seven days in a row, removed it on the seventh day, then started over. I also wore dark polish on the day of chemo so light could not penetrate to the nail bed.
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Hello/Saludos,
I am a Latina with breast cancer, born and raised in the US and fluent in Spanish. I have found this online community to be very helpful and full of resources as I navigate this unfortunate new terrain. That said I was surprised by my lack of luck in using the search feature to uncover more than 2 other Latinas. I have many identities: NY'er, educator, lawyer, feminist, formerly, "great head of hair" ; > - and, Latina, and I'd like to connect to others with these backgrounds.
In repsonse the Moderators were good enough to create this brand new forum. It is not necessarily a Spanish language forum. I am, as are most Latinas residing in the US, most comfortable in English. I was seeking a space for all Latinas, where conversations can happen in the many languages that we speak certainly but where the focus is our common culture rather than a language that some of us use.So, if you'd like to join us, Bienvenida! Come find the new Latinas/Hispanics with Breast Cancer forum. I am glad to connect. Perhaps like me you had been searching for a space to drop into occassionally where discussing issues that might arise more commonly for Latinas/Hispanics is possible without too long an explanation. I truly appreciate the community I have found on this site and want to also discuss research that specifically addresses breast cancer risks for Latinas or the importance placed on femininity in some Latin cultures, or quizas/perhaps traditional resources/remedios, or the significance of hair loss for a Latina who comes, like I do, from a hair obsessed culture. Any way, I'm sure you get it and that's the point. I'd love to spread the word that this gret new forum exists. Please spread the word to yoru friends and forums that this new space exists so that they will cosndier joining us.
Mi nombre es Vielka. I am looking forward to getting to know everyone who will join us.
Vielka / VVH
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SpecialK You're like an angel with all of the helpful info you provide to all of us. Thank you!
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Marcia1111 The nurse told me 6 hrs for the Taxol, too. They give it along with Benadryl. I'm wondering if I'll be able to drive. Have to ask. They said they give it to you slowly, because there is a greater risk of a reaction to it. I don't start that until August. Minimal SEs with the 2nd infusion. Hope it keeps up on the next one, but I'm not going to take that for granted. I'm thankful! Especially, because I'm an old fart (58).
I'm shocked, because I thought my age would work against me. I never thought I'd be able to work. Guess it's just luck. -
Speaking of icing....I wish I had done it from the beginning, because I still have the dark nailbeds and also dark on part part of my nails. My chemo manual said it's a SE of the cytoxan and to discuss with my dr if it happens. I didn't realize cytoxan would do that. Hope it isn't permanent already and hope no one else gets this.
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Simplyblessed I'm going to pray that they don't admit you. No one wants to be inpatient. Get better!
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SpecialK I have my stencils and I'm going to practice tonight. I still have my eyebrows, because they were pretty thick to begin with. Thanks again!
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keepmoving - you are welcome! The dark nailbed should grow out with your nail. I had not heard that Cytoxan would cause the nail SE, but I guess any chemo can have that effect. The taxanes cause the lifting, which can become a permanent SE, thus the icing. As far as giving you ladies info - there were many that came before me that passed on info to me, so I am just paying it forward to you ladies! Often I learned more from those who had experienced chemo than I did from the medical professionals!
The extended timing may be for the first infusion of the new drug - to make sure you are tolerating well. My pre-meds were Tylenol, Benadryl, Aloxi and Decadron and took approximately 30 minutes or less to infuse. My Taxotere infusion was usually about 90 minutes. I received Carboplatin and Herceptin as well, in that order, and my infusions were always at least six hours - but that was for labs, a doc appt., pre-meds, and all three drugs each time.
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Pamelahope How great that you can't feel the lump. That makes this all worth it. It's hard to believe that the AC is almost over. You're stronger than you think. So happy for you. I hope to hear something similar when I see my MO. Right now, I'm too afraid myself to even check. Silly, I know!
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Keep moving, Thank you for your kind words. I needed them. I was doing good until the third infusion. I won't give up but the thought is there. I am having trouble even thinking of the fourth infusion, and I know taxol is next. I don't feel the lump but I still have some nipple inversion when I lean forward. I think it is better not to check. Everytime I see that I get scared. I know I will get more courage for the fourth infusion once I feel better. Right now the taste of water is so unappealing.
SpecialK, thank you for the reminder about the peas. It is nice to see someone who made it through the other side when you are in the midst of side effect torture.
Pam -
I haven't noticed any problems with my nails. Does anyone know if it happens right away or is it progressive with each treatment? I have been trying to keep clear polish on them just because I had acrylic nails before and they were already a little thin from having the acrylics removed.
I forgot to tell everyone that a couple of days ago I decided to buzz the hair. It's pretty short, maybe about 1/4 inch, but the cool thing is my 17 year old buzzed his head with me! He's awesome!! I haven't lost any eyebrows or eyelashes yet. Anyone loosing theirs? Just wondered if they come out slower than the hair on the head does. -
ellebee: I had the same problem. Solved it with lavender essential oil. Lavender is a natural antiseptic and has lovely, calming properties too. I believe you are one of my Pinterest friends - have a look at my "Products I Love" boards. You'll see lavender oil on it with a link to the best one - been using it for years, for everything from skin complaints to kitchen burns and even mosquito bites. Hope it helps!
xoxox
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Mom24boys,
That is so cute how your 17 year old buzzed his hair too! Awesome. The only hair I have lost is my underarm and head hair. I guess the rest will go soon??? Pam -
mom2...i joined the ranks of shaved heads this eve also..daughter offered to do hers after she finished mine..I forbid her to!!! was hoping mine would all fall out but still had some stubborn stuff up there..and it was looking fried..so ..off it went..celerbrating the 4th by going topless..LOL
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Doris, You still have your sense of humor! That is sweet of your daughter. I would have said no too. You know, before this I would of said of course for the people that love us, they don't care about our hair. Another thing to experience it. It is liberating! Pam
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My husband, who is almost totally bald anyway, offered to shave it completely. I said that I didn't think that would make me feel any better about my hair (or lack of). He did shave his beard as a sign of solidarity, though. I'm not sure what that has to do with my head. ANyway, he still hasn't seen me bald. At first I didn't want him to see, but now I'm getting over it, but now he says he doesn't want to see my bald head. At first I felt hurt, but now I realize that to him, that will make me look sick and he doesn't want to see me that way. He has been so supportive throughout this whole ordeal, so I will continue to do my best to stay covered.
Happy 4th of July! It's pouring and thundering and lightening here in South florida. Hopefully , it'll clear up before the pool party we're going to!
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Marcia, While I still had hair, even before chemo my husband talked about me wearing the wigs all the time, as not to scare the children. Now he is totally used to it. I felt hurt at first. However, I understand as it must be hard to see us sick.
I have had neighborhood friends bringing me food. I said no they are doing anyway... You would be surprised how people don't care, like they want to see!!!!!!! Everyone, is much less squeamish than me, apparently! I showed two friends real quick under my hat with hair! They treated me the same, were not scared, very curious. My son wanted to touch my head!
I am different with my breast. I have not undressed in front of my husband since diagnosis!!!! TMI but incase anyone having the same problem. I am too sick from chemo but I don't want to do anything and have not since diagnosis. I think a combination of being too sick and knowing I have cancer. Maybe once it is gone I will feel different. My husband is treating me the same so he is still attracted to me. Pam -
There are some benefits to my situation. My husband was putting off going to te gym for an hour. Finally, I said, "I'm so hot. I'm going to take my hat off." I started to do it and he ran out of here so fast!
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SpecialK, thank you for the nail info. It helps to know that it won't be permanent. I'm going to polish them with a dark color after I see the dr Friday.
Mom24boyz, it happened to me after the 2nd infusion. It wasn't there at all after the 1st one. My chemo training manual says it's from the cytoxan.
Thank you for all the great websites everyone. I just ordered a chemobeanie and I know I'll feel better just by wearing it. I love it! I'm also going to check out goodwishesscarves, the once a month thing, and the lookgoodfeelgood thing.
Marcia1111, funny my husband is reacting the exact same way. He said it won't bother him to see me bald, but last night I was absent-mindedly pulling out little clumps of hair while watching TV, and he asked me to stop. He doesn't want me to do anything to rush it along. I think it's the looking sick thing, too. I've found a wig that I like, so I'm doing my best to stay covered up now just like you. So strange, we were thinking the exact same way. He's being so supportive, and I figure I at least I can do that for him, too. I found the wig on paulayoung.com. Very reasonable if anyone wants an extra.
Pamelahope, I usually love a cold glass of water, but it doesn't taste the same to me either. I miss it. We all feel like quitting this whole thing sometimes, but we know we won't. It's not even an option. Can't wait until we can all celebrate our last treatments. I was just looking at a champage/brunch cruise in Lake George NY in October after I finish. It's just a day thing, but I think it will be nice and relaxing. One little way to celebrate.
I don't remember who asked (sorry), but I still have my lashes and eyebrows. I notice I'm losing lashes little by little. Some people never lose either one, I think.
StephanieJM, hope you're enjoying your retreat!
Steve and Billiemae, hope you're doing ok!
Good luck to anyone in the BGC tomorrow!
Happy 4th everyone! Enjoy!
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Re: Nails: My onc told me to soak them ocassionally in water/vinegar mix. I understand that keeping them cold with frozen bags, etc. works becasue it prevents the chemo meds from reaching those areas. That for me is not a risk I'd take. Does anyone understand that a different process takes place? (Obviously this is a very personal choice; just as treatment is.)
VVH
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Marcia,
You can have fun with that hat trick with your husband! You made me laugh.
Keep moving, I went to college at Upstate NY. It was many years ago, I was about 20, but we went to Lake George. I loved it!! I have not been back. I wonder what it is like now. Thank you for giving me a vacation idea. When I am better I want to take my kids to Rocking Horse Ranch in Highland Falls, NY, heard its great or Mohonk Mountain House in New Paltz. That is if I can still afford it after all this cancer. I am almost at my insurance cap so hopefully, that will be better.
VVH, I understand your concerns about icing. Part of me is afraid to ice the fingertips of the bc side. However, neuropathy sounds bad too. My birth mother gas Guillain Barre so that is all I need. I will ask my MO. Pam -
my nails started to show the dark lines after round 3 . . . I wasnt expecting it until the taxotere so it kindof took me off guard. It isnt on all of the nails, but most of them and im guessing it will be all of them by the next one. I do feel the cuticles are extra dry so I have been making a point to rub in some lotion with my daily slatehring of lotion. Anyone else have to use a ton of lotion? my skin has never been so dry :-( I'll have to try the vinegar/water soak . . . I think i read using tea tree oil on the cuticles too, but I have to double check that.
as for the bald head - I go topless at home every day and my dh doesnt mind . . . he is the one that shaved my head. I think for me the idea of being bald was scarier than actually doing it. Oh and I learned that shannon miller - the olympic gymnast had ovarian cancer with chemo and she has several pictures on her website witout hair - you go girl!! http://shannonmillerlifestyle.com/category/my-journey
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oh and is anyone else starving all the time? I am. I'm not eating as much at a time, in part because being too full is painful, but this is getting ridiculous . . . I am eating all the time. Just wondering if it is just me.
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Radioactive, Thank you for the Shannon Miller link. It helps to see other women who have survived cancer and chemotherapy. I feel hungry too. Not sure if it is related to my new found hobby of browsing pinterest though. LOL. I always loved food though. Pam Can't eat a lot though...
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VVH - You would just be icing the fingertips and toes, not a place that would be likely to have mets, thus not a risk. You are icing during the infusion itself, but as soon as you remove the ice the drug is still in your system so you are still receiving benefit. Many cancer centers supply the icing gloves - if it was a risk they would not do so. The centers that don't supply icing equipment either consider it a nuisance because they have to have an extra freezer and involve nursing staff, or they feel if it is something you want to do yourself you can bring your own. My onc approved my use of ice without a problem.
For dry skin I recommend Aquaphor - it is less greasy than Vaseline. I used it on feet at night with socks, on hands at night with cotton gloves, up my nose (TMI, lol!) around my eyes when they got dry from Taxotere (eyes constantly watering caused cracks. Neutrogena also has an excellent hand cream - it comes in a short white tube with a flag on it - it is very thick and moisturizing.
mclark55 - I see that you are ER-, but lavender oil is controversial for ER+ ladies due to potentially estrogenic properties, as is tea tree oil. I am glad that it works for you though!
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Pamela: Thanks. I think whatever is right for you, is right. You've got my support.
Special K: Thanks for your response. For my part, I am comfortable with my choice to allow the TC to get everywhere. Just wish it didn't come with darker nailbeds.
That said, I expect full recovery but its all good either way as far as I'm concerned. VVH
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VVH - it is not the darkening of the nail beds that concerns me it is the lifting and loss of nails. This can become a permanent SE.
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KeepMoving - It has been about 2 weeks since my hair fell out and I'm starting to get tired of having to wear a hat at home. I'm glad to hear what you said, because it will help me to respect my husband, knowing that someone else is doing the same thing.
I lived in Albany, NY many years ago and Lake George was a favorite getaway. The cruise sounds great. It's so nice to have something positive to look forward to.
radioactive - It is definitely not just you. I feel as though I'm eating a ton. I get full very fast. It's like the difference between very hungry to uncomfortably full is the difference of one bite. My MO said that is my version of nausea.
Pamela - I'm glad you're enjoying Pinterest! It's sometng fun to do when you don't feel well enough to do anything else. I made something from Pinterest to bring to a party and it was delicious!
Special K- Thanks for the info. I was thinking about using Tea Tree Oil, but didn't know that it has potentially estrogenic properties. Do your finger feel numb during the icing? -
marcia1111 - not really - just cold. Even though I live in Tampa and it is not that cold I still dressed in layers for chemo because I knew that I was going to ice, and probably be cold (and I started chemo in February). Some people bring a heated throw blanket - I think you can find them at Bed, Bath & Beyond. I had Taxotere first so I got the icing over with, then proceeded on to Carboplatin, then Herceptin. By half way through Carboplatin I was back to feeling normal temp.
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SpecialK - The center where I go has nice heated blankets for us, but I bring fuzzy socks for my feet. Are there certain chemo drugs that are more likely to affect your nails. I'm not on any of the same ones that you're on.
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