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Anyone starting chemo August 2016?

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  • MFalabella
    MFalabella Member Posts: 105
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    Caligirl, I Have corrected your start date, no worries Love! I hope you are doing well.


    xoxoMichelle

  • kaceyr0423
    kaceyr0423 Member Posts: 28
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    Does anyone know how much wigs cost?? I have long curly hair and I want a wig that looks like my hair. I want to be able to wash it, and I don't really want fake hair. I also can't afford to pay a fortune for it.

  • jandjmom
    jandjmom Member Posts: 40
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    ajbclan - Thanks for reading. I would love an RV, but we are active in Boy Scouts so we tent camp all the time. I was actually spending a week at their summer camp when I felt the lump that brought me to this website. My breast surgeon is hoping for a lumpectomy followed by radiation, hence the chemo first. My Medical oncologist says my planned regime has successfully reduced to No Evidence of Disease in 81% of women with my specific markers before surgery. *fingers crossed*.

  • jandjmom
    jandjmom Member Posts: 40
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    kaceyr0423 - I was just wig shopping on Friday, and the styles I am considering were in the $250-$300 range. Synthetic hair. I am calling my insurance tomorrow to see how much they will chip on for the RX for my 'cranium prosthetic'.

  • kaceyr0423
    kaceyr0423 Member Posts: 28
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    wow, insurance pays for wigs????

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97
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    Kacey

    My insurance pays $250 lifetime... But for a natural hair wig in my long hair length they started at $2000! The one I chose was almost $2500. The synthetics are much cheaper but can not get wet, or close to heat (open oven can melt the wig) as this causes damage. The two synthetics I got are purely for errands and quick use... And my natural hair wig is for work and events. It is frustrating that wigs are so expensive!


    Many cancer centres have wig banks where past patients donate their wigs but when I visited I was really disappointed in the choices! They were all short and seemed "old" to me so I bit the bullet and paid for something that made me feel like me.

  • kaceyr0423
    kaceyr0423 Member Posts: 28
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    Hope, Thanks for the info....holy moly......I guess I'm gonna be stuck with ugly synthetic hair, there is no way I can afford that Sad

  • jandjmom
    jandjmom Member Posts: 40
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    Wig thoughts - I have a waist length braid down my back atm. I am cutting it off tomorrow *sob*. I plan on getting a short bob style wig. Unless I plan on wearing my wig (and they only last about 9 months, anyways) for the YEARS it will take to grow out my hair, I figure I should embrace having short hair sooner, rather than later. YMMV. BTW - I am too poor to even consider cold caps or weaves once its starts growing. Last point - with Herceptin, I hear the hairs grows back rather slowly. I'll be on that for a year.

  • Jiffrig
    Jiffrig Member Posts: 158
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    Thanks for setting up our August list, gals! We have an impressive group and we will be each other's strength and support in getting through this battle. Seems I am one of the first, have 2 under my belt, so I will try to report as I go. I'm doing A/C first and it has been very manageable. My best advise is ice, ice, ice! Nibble on ice 15 minutes before, during infusion and 15 minutes after and no mouth problems. I am cold capping also, so I am chilled through! I'm scared of the taxol, so that will be my challenge. Doing all of the before nipple sparing surgery in December. Lucky to live in a large metro area where available. Good luck to all newcomers! The anticipation is worse than the actuality in most cases.

  • darab
    darab Member Posts: 894
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    Hi all newbies and "oldies!" Isn't it scary to see the list and realize we are just the tip f the iceberg with women who are going through this with us. I'm constantly struck, at the hospital, out shopping, and certainly here on this site, just how many of us are fighting the same fight. I just love though the people who are years out and still here posting, supporting, and encouraging! Thank you all!

    Yesterday I realized that my positive attitude had a little bit of a crack in it. I was out shopping and it was so nice because I realized that no one knew I have bc. Then I got back to the car, got a phone call, and while putting my hand through my hair, realized it is not coming out in clumps. I know no one wants to lose their hair, and it REALLY isn't that we are vain, I thought, no one knew today in the store that I have cancer, but the minute the scarf, the wig, or the hat goes on things change. I have a little birthday party tomorrow for my granddaughter who turns 2 and I really wanted to look normal for that. Not sure if I will wear my wig or try to fix my hair, but will probably go in to hairdresser and get it buzzed on Tuesday.

    Lisbeth and abjclan, I've tried the hat with halo, but didn't get it. I thought I looked silly. I bought a pretty good wig, but then I found some cute and much less expensive ones that are Christie Brinkley wigs. I'm sure I'll look JUST like Christie when I put one on!!! :-) LOL. My sister told me that sometimes she just wanted to not feel sick so she would put a wig on. It's hard this time of year though as it's still really hot here for at least another 6 weeks or so, and I fear the wig will itch or be hot. I haven't been able to find many smaller scarves lately so yesterday went to the fabric store and bought a couple of yards of soft thin fabric that I could use as head scarves. The pretty scarves I've found are super big and I'd have to wrap it several times around my head. I could stick fruit in it and dance around with castanets.

    Yesterday I was also SUPER BAD about diet. I rarely get depressed so to totally lift my spirits, I stopped at a wonderful bakery and had the biggest piece of chocolate mousse cake you've ever seen. And I sat down at a little table and ate every single bite! It was awesome. And then came home and had a peanut butter and jelly sandwich for dinner! I've really been doing a lot of vegetarian, organic, healthy food, and couldn't believe what I did. Getting back to normal today, but it sure was good!

    Pinkjellyroll, Hope, Sherri, hope you're beginning to come out of the first week yuck with chemo. It took me 7 days and then really have felt good after that. I get tired at night, but nothing worse.

    To those starting this week, just remember, you've got this!

  • kaceyr0423
    kaceyr0423 Member Posts: 28
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    I Have to say Dara, I love your attitude and positivity! You also have such a great, welcoming smile. I hope I can be like you through all of this. I'm just getting started, and I'm going to need all the energy I can muster with my 4 year old, so I'm trying to maintain a positive attitude and psych myself up for it. I'm looking at it as a battle I'm fighting, and I'm winning so far, so just a little ways to go...I've got this so far. I'm willing to be sick for a little bit to Kick Cancers Ass! ....It's just a shame chemo doesn't just kill cancer eh?

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97
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    Kacey, I hear ya! As a single mom of 9 yr old twins I worried about being able to keep up and manage through chemo and all the rest. The BMX was challenging, but I did it... And so far... 3 days post first infusion, I seem to be managing ok. We can do this... And when we think we can't- we will just come here for support!

  • darab
    darab Member Posts: 894
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    Kacey, hang in. I know it will be hard, but I bet your 4 year old will keep you totally grounded and loved. Kids have a way of putting things in perspective and real. Have you talked to him (?) about what's going on? I was worried at first how my grandkids would react. I think they worried a little, but then found that I'm still the same person and felt it was going to be OK. My 5 year old grandson has some disabilities and is extremely close to me. I wish I could spend more time with them, but do the best I can right now. I think it's best to be honest with them and let them know it's ok to ask questions. You all are my heroes who have young families. I know you all want to keep things going as usual, but hope you also give yourself permission to ask for help or at the very least, feel OK putting a Disney movie in!!! Once you get your first infusion, I think it will help so you know how you'll react. For me, it's always the unknown which is the hardest. And with every hair I'm losing, I'm think, "Yes, kick cancer's ass!"

  • kaceyr0423
    kaceyr0423 Member Posts: 28
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    Dara, Yes, I have talked to her about it, she's aware of what's going on, she's been through a lot in her short little life, so it's important that I'm honest with her. She also needs stability, and needs to know I'm going to be ok, so I have reassured her that although I'm going to be bald, and maybe throw up a little, I'm going to be just fine. She will be ok I think. As long as she has food, she's golden lol. I'm wig shopping, and I'm including her in that process, I'm even going to let her help shave my head--she thinks that is hilarious! So, she is not traumatized at all with all of this, in fact, she gets to have sleepovers with her sister and her cousins, so she's kind of liking it. She's 4, cancer is just another word to her.

  • jandjmom
    jandjmom Member Posts: 40
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    I am not sure how I would deal with this if I have little kids. My heart goes out to you Kacey.

    My kids (13 and 11) took the news pretty well that I had cancer considering their grandfather died of colon cancer just 34 days beforehand. He was just diagnosed 11 days before he died. Eek. Assured them that I wasn't going to be like grandpa. They are old enough to get an idea of what's coming. I feel for my husband, though, having to mourn his father and now deal with me. But everyone is keeping their spirits up. Nana lives close by so the kids can talk and visit with her. It is so important that they have a good place to escape when things get 'real' around the house. My husband also has that outlet.

    My place will be, hopefully, be here with you guys. Have you noticed how every other thought (or more) is related in someway to our disease? I am totally obsessed! Have I posted 4 times in the last few hours - got a clue, lol. I also have a private Facebook page so I can talk all things cancer and keep it off my main page which I want to be about good times with family and friends. How are y'all managing?

  • WenchLori
    WenchLori Member Posts: 1,027
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    Welcome LisbethS, Kaceyr0423 ans jandjmom! We are all here for you, as fireheart and Hope pointed out. Feel free to post any and all anger, tears, laughter, fears etc. We are here for each other.

    Fireheart, I think you over did things just a little lol I know relax and take it easy doesn't fit our way of life but sometimes it's a good thing. I hope your getting some rest between your light chores. My Sunday after chemo is my sleep day but I'm retired so I don't worry to much about getting up for a busy day at work on Monday. Thank you for the Hello Courage website!

    I'm starting to get sleepy again, seems I can only make it thru 3 or 4 hours of wakefulness! Oh well, I'm to old to fight it so I'm off for another nap!

    Here's hoping everyone is having a restful, relaxing SE free Sunday!

    💜💜💜💜💜💜

  • WenchLori
    WenchLori Member Posts: 1,027
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    Thank you Michelle for posting all of ourstart dates. That was awesome!

    Love to all

  • Kz1966
    Kz1966 Member Posts: 40
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    I would rather come here and chat. At least here we understand each other. It's hard to talk to people who aren't going through it. They mean well but it's not the same. I think about it constantly. It's kind of hard not to lol. Today I kept busy and did alot of cleaning. Worked on getting my bag ready for my first treatment on Wednesday. I just love the support and openness here Smile

  • djm71
    djm71 Member Posts: 16
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    Hi all,

    Sorry I've been MIA. My first week after my first infusion was pretty brutal for me. I never did throw up, but I almost feel like I'd of felt better if I did. I slept a ton, had a fever for a few days, lost 12 pounds! My MO was concerned, but he said he wants me to move forward with treatment. Which is good because I really dont want a setback this early on. My fever broke and I am feeling SO MUCH BETTER this week! I think I just got dehydrated. I've since been sucking down as much water as I can stand, as well as jello and juice and watermelon. Anything that will help! I've gotten my taste back and my appetite. Funny how I am feeling SO much better and now its time for the next treatment tuesday. lol Oh well. Guess that's how this game is played.

    Kacey, I went wig shopping a few days ago with my sister. I had to go the synthetic route and the place I got mine from offered a second wig free for anyone currently in treatment, if you purchase it within 30 days of the first wig, but I did have to pay taxes on it. My wig was $400, I went ahead and got my second one while I was there. I'm probably going to get the longer one trimmed. I'm very happy with my purchase and they look very real to me. There were alot of cheaper ones available, but they had that really fake feel to them and looked very thin. So I did pay a little more, but it looks very real to me. She also gave me a bottle of hairspray, refresher spray, shampoo and a wig brush for free. She was very kind and generous!

    I enjoy reading everyone's posts and updates! I'm not sure what the list is that you guys are talking about. I haven't gone back and read far enough back I guess. lol Anyway, hope everyone has a wonderful evening!

    Good luck to everyone having treatments this week, big hugs!

  • ajbclan
    ajbclan Member Posts: 396
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    Did some Target shopping for all the SE possibilities, as well as picked up my anti-nausea meds and steroid.

    KZ1966- if you're up for sharing whats in your bag, I need to start doing that as well! I know there's some info on this site, but sometimes I can't find stuff when I need it. LOL. I'm on target for chemo the same day as you.

    jandjmom- your treatment makes sense. I've got some family history of breast, colon and my dad had prostate cancer- so I'm already worried about colon next, so going to get rid of my size A boobs so I can at least take the worry down there.

    jiffrig- on the ice ice ice- is it only during portions of the treatment? I know I'm sitting there for 4 hours or so, so wasn't sure if you knew when they were putting what drug in, or how that all worked? Seems like the ice chips work for people so I'm willing just want to understand when! Thanks!

    DaraB- I actually counted who was Aug chemo folks on the list- basically about 30 of us that have found this site....it's just crazy to me as well. I'm getting used to my short hair, but it'll be weird to have folks looking at me once it's gone. I'm still up in the air about the wig thing....but open to it and might check it out. Christy Brinkley?! Sounds good!

    DJM71- stinks how you have felt, glad it's behind you and pray that the next round goes more smoothly afterwards.

    Appreciate everyone.....


  • Jiffrig
    Jiffrig Member Posts: 158
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    I did ice chips 15 minutes before, during infusion of A/C (10 minutes) and then for 15 more minutes. Not during nausea drugs, etc at beginning. Absolutely no mouth problems this time! Unfortunately, I am eating more though since I can taste things normally

  • Kz1966
    Kz1966 Member Posts: 40
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    Ajbclan - I have a blanket, slippers, lemon drops, juicy fruit gum, crossword puzzle books, tablet, my journal, tissues, chapstick. The facility has water, pillows and blankets. I haven't decided what to bring for snacks. Have you? They are doing ice chips before, during and after. I picked up my meds for nausea and cream for the port. Let me know what you bring, I may need more stuff lol. We'll have to check in with each for sure!!

  • fireheart438
    fireheart438 Member Posts: 85
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    DJM - So sorry to hear you've had a tough time. It's interesting to me how differently each of our bodies reacts.

    For all of you who are moms of school age children and younger...all I can say is WOW. You are my heroes. It can't be easy to balance caring for yourself with doing all you feel you need to do for your families. Until I started reading your posts here I never really thought about what it might be like.

    Oh, Dara, you always manage to make me laugh. Now I envision you dancing at the Rio Olympics closing ceremony all dolled up like Carmen Miranda.

    To those of you starting this week - I packed a ton of things for my first infusion. I had two large bags. Needed my DH to help carry them in. Even though I knew about what the cancer center had to offer, I had no idea what I'd want. It's summer, but I'm always cold in A/C. So I wore shorts but packed longer pants and two different weight jackets. I also packed all kinds of snacks because I'd be there all day and didn't know what I'd want. While my hubby was taking me in, I kicked him out to go back to work and have some sense of normalcy. That meant I was on my own and it's not like anyone could run out and get me anything I needed. I pretty much packed everything but the kitchen sink (though I may have tossed the bathroom sink in there). Anyway, after the first infusion you'll get a better idea of what you might need. I was able to pack much more lightly the second week and may do even better this coming week.

    Sweet dreams, all!

  • kaceyr0423
    kaceyr0423 Member Posts: 28
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    jandjmom- they say he doesn't give us more than we can handle right?She's actually what's going to get me through this! Sounds like you've had your fair share, I'm sorry for your losses. I'm glad your kids and husband have Nana close by. Even though they're aware, and included in the process, it can still be scary. Also with losing Grandpa, that has to be in the back of their minds, so they definitely need somewhere to "escape". Mine are 32, 29, and 26, and they can't even talk about it. The 4 year old is stuck here, so she really has no choice, but the other ones don't even come around. (unless, of course, they need something). It's almost like outa sight, outa mind. I'm sure they're afraid, and they can't bear the thought of me dying. (even though I'm not going to. when people hear cancer, that's immediately what they think sometimes.) It's sad though, because although I understand, I sometimes feel they don't care.

    I don't know how many of you have experienced this---Other people don't know how to react to us. they don't know what to say, they don't know how to feel. Sooooo, they just avoid us. Which is really sad, because I don't know about you ladies, but I have never felt more alone in my life. I feel so stressed and overwhelmed by life's circumstances that I could just scream and cry and throw a big ol hissy fit! But what would that get me? A few nights stay in the loony bin perhaps, and that's not the kind of vacation I need! I guess I just need some support and to know that my friends and family are here and they care...but I am oh so grateful I found this site, and you ladies! Thank you all for being so welcoming and supportive---and for the wealth of information. I have learned so much in my short time on here, things I never would have known.

    WenchLori Thanks for the warm welcome!

    djm71 Sounds like you got a great deal on the wigs! I've been looking into synthetic, and some can actually be curled and straightened, and washed, so I'm exploring that option. My MO told me (I haven't started yet) you'll feel real bad, start to feel good, just in time for another treatment. So sounds just about right. Hope your next one's not so brutal on you.

    Hopefloats Twins--God bless you!

  • Erdie
    Erdie Member Posts: 10
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    Sorry I've been MIA. On day 13 of second TC infusion. I gave up on cold caps on Friday and shaved my head. Was loosing tons of hair and couldn't get it clean even when I washed it. I felt disgusting. I feel so much better now. Jiffrig I hope you have better luck.

    I was wondering if anyone is having trouble with rashes? last time it was on my chest from day 5-10 and this time it was on my face on day 9. When I asked the nurse practitioner she said it was probably from neulasta and it would probably get worse and when I asked what to do about it she didn't answer! It was if I was speaking a foreign language. I guess that means grin and bear it.

    I've been taking claritin everyday in hopes of preventing the rash.

    DaraB I noticed that you recently went to your allergist. I have terrible seasonal allergies, allergies to dogs & cats and mold and dust mites you name it. while I've been on chemo I've had NO allergies! I can hug my parents' dog with no problem. I was wondering if you've had a similar "reaction". I googled it and found another discussion board on the interwebs of allergy sufferers getting a reprieve for up to a year after chemo but then they come back with a vengeance. I'll take a year without allergies. It's definitely therapeutic to be able to give and get some dog loving while going through this. My boyfriend asked if we could get a dog for a year;p

    Lifeisntover I've been taking atavin before infusions and the first week at night to help sleep. While I haven't had bone pain I've been extremely ansty during that first week. Just can't get comfortable or relax so the atavin has been helpful. I've also been forcing my self to go for walks everyday. very hard the first couple of days but the anstyness actually helps since I can't relax.

    As far as hair and head covering. I'm mostly using baseball caps (I'm a teacher on summer vacation so might not be an option for those of you going to work.) I have a pretty extensive collection of hats already and I spent alot of money at my hospital's "boutique" and found chemo beanies are the best pretied scarves: http://chemobeanies.com/

    They are pretty and light weight for summer.

    I found these ladies are great at teaching how to tie scarves (tichels). They also sell any accessories you might need to give yourself some volume. http://www.wrapunzel.com/

    DaraB I'm so sorry you're having such trouble with your tongue and tastes--ot sure if this will help ( I mostly just need to add salt to everything). but this is the guide from that cook book I posted previously. the ginger meatball soup totally got me through days 5-10 when my stomach is not quite right. http://www.rebeccakatz.com/recipe-box/chicken-vege...

    Fat-Extra Virgin Olive Oil

    Acid- Fresh lemon or lime juice or vinegar

    Salt-Sea Salt as it doesn't have a bitter taste and has the nutrients that table salt does.

    Sweet-Grade B organic maple syrup, honey or agave nectar. These sugars are not refined and have a more distinct flavor.


    Hang in there everybody. I've found that planning an activity or short trip right before my next infusion when I'll be feeling my best helps get me through. I'm heading to nantucket this week and next month I'll be going to martha's vineyard for a few days before my last infusion. Who needs atavin when you have island chill!


    Erdie


  • Erdie
    Erdie Member Posts: 10
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    Also a great headband cover for thinning hair or no hair are boho bandeaus. Super soft and comfy and good at covering bald spots around the hair line.

    https://www.naturallife.com/accessories/all-boho-bandeaus.html

  • kaceyr0423
    kaceyr0423 Member Posts: 28
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    Oh no...I just called MO, and I'm on the schedule for Thursday for my first chemo...That's my baby's first day of school....They scheduled me for 8:30- She starts at 8:15...I have to see if I can be late. Wow here we go I guess...Ok Ladies...what do I take??

  • ajbclan
    ajbclan Member Posts: 396
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    Good Morning everyone- I saw this, this morning and it was good for me to read and wanted to share.

    image


    Kacey- I'm starting chemo on my daughters first day of school as well- her dad took the day off to take her, and I'll head over for the chemo. My cousin, who battled this 9 years ago at the age of 47 (I'm 49- on the verge of turning 50), told me up front "you'll learn who your real friends are". She said that there are friends she hasn't talked to now since the day she told them. Just can't handle it?

    I got my Nuelesta delivering tomorrow- so hopefully that doesn't get messed up! I put all my med reminders on my online calendar. Hopefully I can get some groceries today and focus on what to bring from everyones suggestions. I know I want a blanket, asked the office if they supply ice chips, and I'll bring water, drink and some pretzels or something?? I may listen to some podcasts- not sure how focused i'll be on a movie. KZ1966- still working on it!

    Erdie - thanks for all of the tips!! I will be looking those up later. I haven't started chemo yet, but looking back on my paperwork the NP dais that the Decadron can cause a flushed face and neck. The Taxotere can cause skin rashes, which it says the Decadron is suppose to help with, but the NP said also to use hydrocortisone cream.

    jandjmom- I chopped my long hair off last week. I cried walking into the salon (reality hitting) and then walking out- on the way out it was more about the support I was receiving from my friends (one that cut my hair, and surprise visit from another).

    I can't scroll back far enough- but I never addressed the BC sister that wasn't doing treatment as she's taking care of her husband. I just spent basically the last 4 years taking care of my mom, who passed away in April from dementia (but- she had breast cancer twice, colon cancer, a stroke so- hospice was like- who knows what's really going on in her body). It's a whole road that is difficult to navigate, and I can't imagine with your own health concerns. My thoughts are with you in the journey. I found Silverado Care has THE best standards when it comes to memory care. They can be a great resource.

    The oncologist office just called to try and change my appt...no! lol. Still set for Wed. Wishing everyone a peaceful day....

  • Kz1966
    Kz1966 Member Posts: 40
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    Just wondering if everyone brings or is bringing a friend or family with you when you go for your treatments? I have a very close friend coming with me Wednesday. I think my husband would drive me nuts lol so he's going to drop me off. Maybe after that I won't need someone. Plus I just don't know how I'll feel after the first one so didn't want to drive.

    Thanks!

  • Jiffrig
    Jiffrig Member Posts: 158
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    erdie, sorry about the cold caps not working. I totally agree about the clean feeling. I only wash my hair every 2 weeks, so it is challenging. Now you can feel clean and much cooler if having hot flashes!

    Kz, don't worry about having someone with you. I have to for help with cold caps, but would almost prefer to just chill out and relax.

    I get the flushing on the 2 days following chemo. Just lasts maybe a 1/2 hour or so each time. I assumed steroids, but don't know. Having a terrible time with my legs being very unsteady this time. Hard to walk. Something different every time! Keeps things interesting