Any 40-ish survivors?
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Hi ladies,
Tomorrow I am officially one week PFC, count down begins for real hair. Just washed my wig, only the second time since Feb, amazing how fast you can get ready to go out when you have no hair. My hot flashes at night have really picked up, it is a good thing I do not have hair because it would be so hot and wet. Interestingly, I do not have many flashes during the day, hope this is the case when I start the Tamox.
Kymn, hope today finds you feeling better. We are all rooting for you.
Kim- hope your jaw is feeling better soon.
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Aww, Kymn . . . I wish there was something we could do to help you. I had such an easy time with chemo and it still sucked. I can't imagine feeling as bad as you do. Take the time off from work if you need to. You have to put yourself first right now.
I too completely blew my diet while on chemo. I had very specific cravings. The first treatment I was dying for cheeseburgers. I ate them every day, sometimes twice a day, for a week before the cravings stopped. The last three treatments it was cinnamon rolls from QuikTrip - not any cinnamon roll - it ha to be from QT. LOL. So bizarre.
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I had some weird cravings too....the first round, I couldn't get enough of Brown sugar and cinnamon Pop tarts...
Second round I craved Chick-fila chicken tenders....
Something different each of my six rounds...it was crazy...
Kymm--hope you are feeling a bit better each day...be good to yourself...let others spoil you right now...big hugs to you too!
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I craved baked potato's, mashed potato's, french fries one week, hot apple pie with carmel sauce the next... the cravings were weird
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Here is some advice that I got from our hospital's nutritionist. Cold foods tend to agree more during these days. I didn't know that when I was so sick but looking back I found that out on my own. I found out in the hospital I could eat sherbet and keep it down and it tasted so good. When I came home egg salad was good. Before that I lived off of a can of chicken broth mixed with a can of cream of chicken soup and mashed potatoes. I rarely eat them now and I can't stand baked or grill chicken anymore.
My cravings for food did not hit until I finished radiation and started the tomxifen. So weird and they have continued since starting the Femara. Salads, rice and gravy, collards, hamburgers I still crave. The beef craving has finally calmed down and I figure that was because of my low iron. I for some reason craved Popeye's red beans and rice....I hated these before chemo. lol I am thankful to say I can finally go by and not want to stop and get these. I also craved fish...I don't like fish. My mom finally took me to get some a few weeks back...that craving is over. Second bite and I thought I was going to get sick. lol Still don't like fish.
Chemo does some weird things to our bodies and minds. I hope you are all doing better today and I hope this helps somebody. My thoughts come in spells and I hope it made sense to you. Chemo brain. uggg.
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Great advice from all-now, where's Kymn? Are you out there? Hopefully you're feeling even better today than yesterday.
I also craved anything potato-fries, mashed potatoes, baked potatoes...and I still lost 8 pounds. I had AWFUL mouth sores after one of the Taxotere treatments, and I couldn't eat for almost a week. That was horrible. They extended to my gums and lips, so I looked like I had huge cold sores. I didn't go out of the house for a week. I wouldn't wish those on anyone.
Funny, other than the sores, I didn't get sick once during chemo. And I'm usually the person that gets every little cold. I know I was a freak about washing my hands, and I never used the kid's bathroom during the entire 6 months. Not even once. Oh and I had hand sanitizer everywhere.
So the beginning of March I got the flu. And I can honestly say I felt worse than after any of my chemo treatments. I didn't go out of the house for 5 days. Hell, I hardly got out of bed for 5 days. Lost 5 pounds. Another thing I wouldn't wish on anyone.
Well I'm off to get a hair cut! Have a good evening ladies!
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burley - I had the same experience with chemo - I have had sinus infections that knocked me out worse than chemo. I had no severe side effects and really only one day after each treatment that I would describe as non-functional - I slept most of that day. Ewww on the mouth sores. That makes my jaw tense up just thinking about it. I chewed on ice chips during and for about an hour after my infusions, which I read helps with the mouth issues. I never had any bad mouth or taste issues, other than a period of about 2-3 days where I could taste salt very well. I had to salt the hell out of my food.
But for the hair loss you would never have known I was going thru chemo. I was really lucky.
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OK, went to the hairdresser instead of the barber to get my haircut yesterday...what a disaster! My niece usually cuts my hair, but she told me she isn't comfortable with short hair like this so she said I should go elsewhere. She is a colorist and doesn't cut hair often, she agreed that the barber was not a good idea. So I went to a local hair salon, the woman said sure we can fix that hair, she made it look worse! As if that was possible. It is standing up in all different places now. I am hoping it grows quickly and I will just gel it down and wear hats until it is long enough to use baretts and stuff. My husband is still laughing at me, telling me I should have gone to his guy since he is the only one who has ever given him haircuts that he gets compliments on. My hair is now shorter than his buzzcut. Waaaa.....
But on a happier note, had my 3 month follow up with the Onc and everything looks good, I was told I need to go for a followup CT scan of my lungs since the PET scan in August showed a nodule or something. So of course now I am worried that I have lung cancer. I guess worrying is normal under these circumstances.
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Oh, another question, what did you do with your wigs? I wore mine maybe 3 times and its a cute wig, I would love to donate it, but don't know where.
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Twinmom06, sorry to hear about your bad hair cut experience. I think the american cancer society takes wigs? Hope you can get your CT soon, so you do not have to think about it too long. I would guess if they were worried you would have had a follow up much sooner.
Irr4993, no hair loss, what type of chemo did you have??
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I had hair loss. I was saying that was the only thing that gave away the fact that I was in chemo.
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Although, there are some that don't cause hair loss. Just not any that were recommended to me.
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Got ya, I thought you had no hair loss, for a minute I was hating you (just kidding). I would agree to the outside world no one would have know I was having chemo over the last 4 months. Even though I felt quite bad, I always put on a happy face, makeup and wig when I go to work, etc. My family especially DH however felt my pain.
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I wish!!
I too was good about trying to look my best even in chemo. I think it helped me feel normal.0 -
(((Twinmom))) - I am sorry the hair dresser went all buzz cut on you. I think I cried at my third trim when my hair dresser (of 12 years and I trust completely) cut the length off the back to finally give my hair some shape. I was just sooo happy to finally have some length...
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Hi ladies, hope you are all well. Im reading all of these posts about chemo, and am getting quite nervous... I was such a happy girl yesterday to learn that my ct scan and bone scan looked clear, however today was a bad day realizing what im about to face. I will have my mx, as well as all of my lymph nodes removed in about two weeks. after recovery 5 months of chemo. Sounds like i am going to have adriamycin, then(and or, not sure how that works) cytxan every two weeks(not sure how long on that) then they will switch me to Taxol once a week. After chemo, radiation to the removal area, then healing for 6 months to do reconstruction. I feel so hopeful that in 18 months I can hopefully put this behind me. I just feel like this treatment plan sounds so aggressive, i am nervous. Any tips on any of these types of chemo? I am also worried about radiation and the fact that its daily. Although I have a ton of family and friend support, but I am a single mom of a 3 year old. How did any of you with small children handle daily treatment, and babysitting? I am also a hairstylist and want to work through treatment, however working with people, I am afraid of getting sick. I cant tell you how many people last winter came in for a haircut telling me they thought they were getting sick... ugh!
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Hi Juliebell - That sounds like a rough round. I had the A/C combo, it was ok for me, but rough on others. I was good during chemo like the other girls said, they give you a nice steroid to help you through the first couple of days. Take chemo day off, it takes a while. Not sure about Taxol, although I've read mixed things on that. Rads a quick but every day, so it gets monotonous. As long as you are easy on yourself it's ok, it gets a little more tiring as you go. I just went to rads first thing in the morning, then went to work. Lots of hand snitizer! I didn't allow my kids to come in off the bus until they rubbed their hands with it, I left a bottle by the front door. I hope it goes well for you.
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Julie you treatment is very similar to mine. The only difference is that I had chemo first and then UMX followed by 34 rounds of radiation. Your chemo is AC...adromaycin and Cytoxin every two weeks for four treatments usually. Then on to taxol...yours is longer but easier on the body. Mine was every two weeks for four treatments but I got so sick that they took the fourth one away.
So in reality yes it is an aggressive treatment plan but not quite as aggressive as the 4 rounds of dense dose Taxol is. So wish I would have had the watered down taxol....maybe I could feel my feet and legs
As far as a three year old I just pray that she is a good little girl and lets her mommy rest when she has to. Take naps with her.
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Welcome JulieBell! I had cytoxan as part of my cocktail but not the other two so I don't have lots of answers for you but I did want to welcome you. This part is so scary, the unknown. I had a BMX with TE recon. My recovery was about 5 weeks but I have heard of others feeling great within a few weeks. Chemo is hard but doable and defiantly take whatever help you can get from friends an family. For me, days 2-5 after chemo were the worse but it can vary for each person. I hope your SE's are minimal. I did not do Rad's but someone should chime in soon to advise on rads.
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Thank you ladies on all of the advice. I am so happy to have found this forum!
Kitty dog, it sounds like our dx is very similar as well. I am hope i dont get lymphdema, as that has me concerned with once again being a hairstylist. I love my job, and that it another fear! I have had my own business for over 10 years ( have been a stylist for 22) My business partner and I had decided before my dx that we would dissolve our business once our lease was up (feb, 12) We were both going to then go to another salon that does strictly booth rental. I am just hoping my treatments are over before that time!
love to you all! xoxox
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Julie - the rads appts only take about 10-15 minutes. That includes wait and changing clothes. I did them every morning on my way to work. Use miaderm or something like that every day and be sure you put it everywhere. I missed a few spots and they burned badly, although the healed quickly. I got tired towards the end but nothing too bad. The worst for me was that it caused some dizziness. My rads onco said it was not rads, which had me scared to death I had a brain tumor . . . lol . . .but my onco said it was rads and that it would go away within a month of ending rads. She was correct.
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I am just checking in and wishing everyone well. I am still in limbo and am starting to go crazy. As you know the Duke physicians were not helpful in giving me a definitive answer. I have been getting a lot of conflicting responses as to my next cancer step. The BMX may have been enough but the grade 3/HER2+ still is troublesome. Currently trying to get one more opinion from oncologist at John Hopkins. I just need someone to say "YES" or "NO" to chemo not we don't think so but if you want it then we will start treatment. I am starting to lose my mind. My main concern is I personally know of 3 people with BC. 2 had met and are no longer here and the 3rd has had stage 4 for 6 years. Sorry to be dreary but I just need help getting answers. I don't want someone to make my decision for me, just guide me in a direction I can feel good about. Thanks for letting me vent.
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mom2one: I totally feel your pain! I went through the same exact thing. Did they give you the numbers for metastasis? I had a 3mm. tumor and my figures were 1-2 % chance for metastasis. I am taking that risk after onco's advisement against it.
Susan
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mom2one: Just to add to my last post....I wouldn't worry about how large your DCIS was since you had the BMX, it is only the microinvasion you need to consider. I am triple negative so I only know my own statistics, but I would imagine your chance for metastasis is around the same as mine, but find that out and I think you will feel better. Let's face it. BC takes many lives, but yours was found very early. That's what they told me at the cancer institute that I go to. They see so many women with large tumors. It is rare to see a small agressive tumor because they grow so fast. I take a good amount of comfort knowing that mine was caught early and now it is up to me to get as healthy as I can. I stopped eating meat, reduced my sugar intake down to almost nothing, and will be rigorously exercising as soon as I recover from rads. I've also lost 30 lbs. and have 30 more to go, and need to keep my fat intake under 20%(this is specific for triple negative cancer though). My onco told me THAT is my chemo. Losing weight and getting healthy will do more for me than any chemo could.
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Burly - I was the same during chemo didn't get the usual colds, sinus stuff etc. I was excited about that thinking it's all gone away, until the rads nurse asked if I have allergies etc. I said I thought I did but they went away with chemo. She burst my bubble when she said you were on so much benadryl, steroids etc that you probably didn't have any little aches and pains either....darn....was wishing the allergies were gone! lol.
Juliebell - when you get to the rads portion of your treatment, find the rads thread for that month here on the boards. I'm in rads right now and the april rads thread has been wonderful, everyone sharing their experience....same for the chemo etc. You start to realize you aren't battling this alone, you've joined the pink war on cancer!
mom2one - your tumor was greater than 6 cm? My OC was very simple in her plan. She told me the size of the tumor would dictate the course of treatment for me.
Susan - I had a friend diagnosed when I was. She had a very small tumor (don't know size) but they did lumpectomy and radiated her while she was open...that's all the treatment she had. Choices are so tough aren't they. My tumor was so large they made my decisions easier for me...weird...
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Susan - I was told the same thing re diet and exercise. It reduces risk of recurrence by 40% while chemo is 25%. I still did chemo because my tumor was close to 2 cm and super aggressive (98% ki-67).
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Thanks Lisa! That's good to know and very motivating. Can't wait to finish rads so i can get back into exercise again. I'm doing Pilates twice a week at physical therapy for my back, but it seems that is allI can manage right now. My back is so not happy! My therapist explained that the body can only heal so much at once, so it should be better once rads are done.
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Hi girls, day 8 and still tired, little dry heaving this am but overall much better than the last 6 days. Going to try and have a nice weekend, get out of the house I have been trapped in here for days and try not to think about treamtment number 4. Thanks for all your prayers keep them coming
love to all Hugs
Kymn
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Susan and Gina: Thanks for your input. I think I do need to see some more solid numbers to make me feel more confident. I'd also like to get a better take on the diet I should be consuming. I have seen Ki-67% and do not know what that is or what my number is. How do I find that out?
Kymn: Hope you feel better soon. Prayers your way.
Lynette
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mom2one, I am doing 16 weeks of Taxol and Lapatinib, surgery, then 12 weeks (4 treatments every 3 weeks I think) of A/C, then rads, and Herceptin followed by Tamoxifin. My tumor was about 2cms, grade 3, but I was told the really big deal is the HER2+. My onc said, given Her2+ disease, they don't even DO the oncotype test because the number would be high, and they would recommend chemo. But I'm also only 39. How old are you? That is a factor as well. I've got a 4 1/2 year old--and I'm frankly more comfortable throwing everything they can at it.
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