Starting Chemo in March 2014
Comments
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My wife had infusion #2 yesterday. She worked 5+ hrs before the treatment. She was pretty tired for the rest of the evening, slept pretty good and woke up all full of energy & ready to get to work. The steroids really hype up her already hyper active mind. She is almost as wild as a 9 month old Jack Russell puppy. The dr gave her something to help curb this. I do not know if those meds are working. I just talked to her on the phone and she was very, very chatty.
No nausea or other SE yet. She gets her neulasta shot today.
She is really starting to shed her hair and having a very hard time handling this. Her scalp hurt pretty bad for about a day or so but that is much better now. I really do not want her in the kitchen and I am preparing all the food. Even with a cap there is hair everywhere. She had pretty thick hair and it is starting to look thinner plus it is just does not appear as healthy. I am taking her to her hair stylist after hrs to have two wigs trimmed and shaped to better match her natural hair. She has cried every time she has tried on these wigs so I hope she will do a little better after they are trimmed. I just hate this for everyone. I know the hair loss can be such a hard thing to deal with.
Thinking of everyone.
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Jenwith4 - I like the temporary hair! It's lovely and quite becoming. I hope you're pleased with it for the short period of time you'll need to rely on it.
Heroldman - your wife is not alone in her feelings by far. My first try of wigs were not right and my DH could see the tears welling. I held it together because the ACS consultant was being so kind and trying to be helpful. I imagine most men don't full grasp the severity until they see a female loved one experience the loss. I loved the comparison to a 9 mth old pup!
Wishing all a great day.
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I hate feeling like shit. Can barely move today. My poor kids are worried about me. Today my 5 year old son asked my hubby "Dad, is Mom going to be on the couch all day today too? We should do something nice for her." So he came home with a card and flowers after running around with my mom in law. It breaks my heart how this affects the kids. Fuck cancer!
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Alli, I was combing my hand through my hair and 50 or so strands were coming out with each stroke. I kind of couldn't stop doing it! Then I noticed hair all over the house, my clothes, my bed and falling down my face onto my sad looking chest. It's late summer here and my car has no aircon so I drive with the windows down. When I looked in the rearview mirror I could see my hair flying in the air behind the car!!! Very funny and sad all at the same time. (hope that makes some of you laugh?) I got my daughter to buzz cut it that night. I think I look like a butch women that prefers women - my husband keeps staring, he says I have a nice shaped head!
Then I had to go to work with my wig on...that was extremely difficult, I felt soooo self-conscious and uncomfortable like I was wearing a really hairy hat. Lucky my workmates are nice people, I was paranoid that the customers were trying to work out what was so unusual about the way I looked. People have said they might wonder but by the time they leave they will have forgotten anyway.
Hugs to all.
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I have to say one thing I am not handling badly is the hair loss.I understand Alli, JoTro, everyone else, how you are though. You know, I opted not to get reconstruction and my mastectomy sutures hurt during chemo, so I'm walking around flat chested a lot of the time because I can't wear my little padded cami...I think I'm more self conscious about that. Once they see my head and chest together, they figure it out and I just say, oh, welt, that's life, that's what I'm dealing with, be happy it's not you and I hope they go on their way and enjoy your day like never before. My hair's almost totally gone now; I have little bristles all over the inside
of my caps. I haven't worn the wig yet; I'm not sure if I will, it
seems strange to me, but that's just me. I had chemo yesterday...and
shot today. Extra fluids today. Every 4-5 days I have to go in for
fluids...anyone else having problems with difficulty breathing/fast
heart rate/low blood pressure/dehydration and thus needing fluids? I
also have a bit of pain now in the tooth NEXT to the tooth they pulled
when it hits air...OMG...if I lose that tooth I'm going to really cry. I do not want implants in my mouth!Sinsin,
I'm sorry you're feeling so badly, take it easy and let your m-i-l help
all that's possible. So sweet of your kids to care so much about you
like that!Heroldman,
I'm glad that your wife is feeling so good -- even though the hair part
is difficult for her. That is transient, at least she is able to get
up and about and feel good and I'm happy for her about that!Hugs to everyone. My boyfriend's here to take care of my until Monday (unfortunately, that's when I start going downhill) but that's the way it's got to be. He's a prince and I treasure my time together. I hope the weekend is nice for you all!
\
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Jmg,sorry about the other tooth! Hope it's alright and glad you have your BF with you! I'm grateful to have my mother in law. Sadly, she leaves tomorrow but a friend just flew in today to take over and help out. So grateful for good friends and fam! I don't go in for extra fluids but I get some at infusion because of the port. They have to flush it. Otherwise, I do ok. I think everyone gets a little dehydrated regardless of how much they intake. I get heartburn and I swear, my heart pounds and I get a rapid heartbeat for no reason. I get it off and on and I can just be lying in bed and my heart just pounds. Kinda freaks me out. Glad to know I'm not the only one. It's so freaky. I mean, I was lying in bed yesterday barely able to move and feeling like shit and my heart felt like it was going to pound out of my chest. So weird!
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As to the hair loss, I don't know how to deal with it. It totally grosses me out all this shedding yet I can't bring myself to let my hubby shave it. And he is so dying to do it the butthead. But I may just let him tonight. It's just so gross. He is even offering to let me shave his head in return. Haha!
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thought I'd post an update on the wife. Sort of doing this so others will have an idea how someone else responded to this treatment, and what might well be their reaction. Plus, I can track what happens to the wife each time.
I am hoping my wife is nearing the end if the side effects for this round. It is day 8 today. By day 10 last round was her first normal day. Wish I had kept better notes from the first round.
What has been different, so far, is that she has had none of the shoulder, neck or back pain she had between days 4-8 in her first round. She also had none of the debilitating headaches of round one. I personally think this has been easier (not the word she might use) but quite different to the last round. She had 3 pretty useless/awful days to begin this round. Totally nauseated. We changed her nausea meds day 3, and she immediately responded, and got out of bed for an hour or so. Since Monday, a steady, if slow improvement each day. Still has bouts of nausea, but I think this occurs only when she has decided to halt the nausea (stemetil) med. Soon as she takes it, there is improvement. Yesterday (Friday) the wife was up and about, pretty much the entire day. We went grocery shopping, and I'd say she is about 80%. Might be stretching or hoping there.
I am thinking that the pain and headaches from her last round might have been so bad that the nausea might have been a minor annoyance, by comparison. Whereas this time, without them, the nausea has been front and centre. Matters not. It's 7.20 AM and she is still asleep. For sure she has slept better this round, so that has to be good. I am hoping she'll be skipping rope and sparring today, and getting back to near as normal, as possible.
Few other SEs this week included couple of nose bleeds. Hair continuing to fall out, but now short stubbly bits, where it is shaved. Mostly nausea.
Hey kiwi jotro I read your hair out the window of the car routine. Very funny. I can picture the cyclist behind you spitting it out
. I joined a couple of othe chemo threads on here to try and understand all possible reactions to the chemo as possible. Expect you all browse them anyway.
I came across a girl wearing a Fuck Cancer tshirt. I am tempted to buy one for my wife. Not sure they'd appreciate it down our church, but I really, honestly think, "who gives a damn what anyone thinks, if you have to go through this shit". Yeah fuck cancer.
I am not affiliated, and trust proceeds from sales go to cancer research. I have not confirmed this either. I just loved the tshirts regardless, and they gave me a smile, which we all need. This is the website...... http://www.fuckcancerfoundation.org
Crap, sorry about the long post. It's been a few days. Keep on trucking everyone and f#ck cancer.
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I'm with sinsin on the hairloss, it is grossing me out but I can't yet shave it. kind wierd thing I noticed is that my hair was sort of in a bob style and all the long hairs are gone and now it's like I have a short haircut without having had it cut, the shedding restyled my hair, strange. Like the newer hair that grew hasn't "released" yet, only the older hair. I've been wearing my wig, trying my scarves, trying to prepare for when I am bald but I just can't bring myself to that point yet. This morning I woke with a terrible headache, I wonder if this hair thing is causing it, lol.
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Regarding Vitamin B-6', for peeling fingers, hands and numbness (neuro posy), when I called MO about it, she suggested three 100 mg pills daily. It took a while, but had very good results. I believe that may be the reason I just have slight peeling on feet and toes, but that is all. Nothing like the trauma of my hands.
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Well, I am about to receive AC #4, the last one! This Thursday. As we know, getting it is not the big deal, it's after. I think my body has had enough of this stuff. Went to the opthamologist this week for the everloving dry eye/wet eye. He told me we have two layers that make tears and chemo is wrecking one of them. He sent me to get OTC Theratears Gel No Preservatives to use until after chemo. About every two hours. Not perfect, but better. Hemmorhoids not happy, MO said I could use Anusol HC Suppositories, RX. I have had the esophagitis yeast thing (hard to swallow and hoarse). MO nurse said to swish and SWALLOW the Nystatin. So here are my helps for today. ONE MORE AC AND THEN 4 TAXOLS THANK YOU JESUS
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Chemo # 2 yesterday, feeling good now took pooches out for a long walk with my hubby today, give myself Neulasta shot in 2 hours. Took my claritan and compazine and drinking lots of water. I iced my hands and feet with frozen peas yesterday. Put 2 bags on my feet then my hubby wrapped them with ace bandages. Worked good. I just held the peas in my hands and only for the Taxotere. Hoping to avoid the constipation that I had last time, I thought that was the worse part, and the bout with the acne, they told me I should probably expect that again, that it's from the steroids. Hair is gone but my DH took me out and bought me a really nice wig. Won't wear it everyday but it'll be nice when we go out at night and stuff.
lgoldie, glad to hear you're almost done with the AC, hopefully the Taxol will be kind to you and your eyes.
Xrayalli, I had the am headaches for awhile about 2 weeks after my 1st round and I found a strong cup of coffee and 2 ex strengt Tylenol worked everytime. Don't know if it would help but it did wonders for me. We started chemo the same time and my hair is gone, almost all of it fell out on day 20.
wifeWBC hope this round continues to be a little easier, I agree the hair thing was hard at first, but now that it's shaved and I working on a collection of hats it doesn't seem so bad. I am dreading losing my eyelashes and brows tho, I think that will be harder for me.
Sinsin, same to you, it's not so bad once it's shaved, that hair in the bottom of the shower just grossed me out. Sorry you're having a rough time, hope you feel better soon.
jmg, glad your boyfriend is there for whatever time you have, nice he can take care of you for your bad days, hope your tooth thing gets resolved soon.
JoTro, Kazzy , Heraldman and everybody else I didn't mention, hope you have a decent weekend, hope weather is nice wherever you all live and may we all have as few SE as possible...Happy Saturday!
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hey ladies! Greeting from December chemo group again! I had second AC Wednesday and so far seen to be a little but better than last go around. I have been taking two Senekot-S pills for the big C. It has helped but I need to drink more water. I have been sleepy this time which is a nice change from Taxol.
Xrayalli- my night sweats and hot flashes have almost completely gone now that I have finished taxol!! And I had leg aches towards dose 9-12 sore muscles feeling and that is gone too. Just wanted to let you know if that happens;). Fingernails still ok as well.
Biggest issue with AC was mouth sores. I had two major ones that made my lips swell like I was in a fight. Dr ordered magic mouthwash which is Maloxx, benedryl and lovicaine sp?? lol!
If you want to see some others been there and still going there, click on our board and read! Use our mistakes and findings now on help:).
Wigs- I stand by one name brand hands down......Jon Renau! Best wigs ever! I have doctors who still ask "your hair hasn't fallen out yet?" And I of course say yes. It is a wig! Tips- get it cut and make sure they cut some short strands around the face like side burns but not ya know. Natural. I wear mine in a ponytail, half up and always make sure it is slightly messy. No one has that perfect hair. And that us what is throwing y'all off!! Hope that helps:). I have a FB page Cheer for Jodi if you want to see some messy wig pics lol! For now this was me Wednesday! Two more to go!
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I wish I could have coffee, it tastes terrible to me right now! My scalp hurts so bad, the shower is disgusting...I feel like I am covered in my hair. I have set the shave date, it will be this Wednesday. I have had a headache all day, even my migraine meds are not really helping today. I am starting to be forgetful, can that happen after 4 Taxol already or am I just so overtired?
Jodi, thanks for all the wig tips, I have a nice long wig and I was planning on wearing it kind of messy like yours, maybe braided, too. What do you wear underneath it?
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xrayalli- I don't wear anything under but it is not hot yet. Not sure if I will. I also have a hat with hair that I wear in a side braid. It is a baseball hat. Hope you feel better! I'm trying to keep up with you since I felt like a loner on my board lol! Taxol first that is! They are great I didn't mean that any other way then the reverse of our chemos:).
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Thanks, Jodi, I appreciate that, I feel a little like a loner, too, being Taxol first. Another girl here and in my FB group is on Taxol/Carbo combo first, her second time around with BC. Just took 2 more pain pills, my head is killing me.
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Kazzy. I need to amend the puppy thing to a nine month puppy who just drank 10 cups of coffee. : )
JoTro. I used to do a lot of motorcycle riding. Your story did give me images of being behind a car with hair flying out the window and getting in my eyes, nose and so on. How would I have explained to my wife when I arrived home covered in someone else's hair?
jmg58. That was so nice of you to say that about my wife. I know she has been so very fortunate to have had so few SEs so far. I hope you get your tooth situation cleared up.
Now for a update about my wife. Before I took her to get her wigs trimmed I told her it was time to think about just getting her real hair cut short. It was a mess and just getting all over everything. It looked bad. It was painful to tell her this but it was the truth. When her stylist saw her and learned of the situation she recommended a buzz cut. My wife agreed to do it. I stayed there with her and watched. It was hard to see but I knew this had to be done and I thought she needed my support. She took it all very well and just had one wig trimmed. The wig ended up looking very much like her real hair, style wise, and pretty close in color. I was pleased. ( well, as pleased as I could be in this situation) She was tired, bummed out and still very wired from the infusion the day before.
We were not home very long when she got very angry and quite bitter about how she now looked without hair. I was not able to reason with her and quickly decided that the day after her infusion was probably not the correct time to do the buzz cut. I suspect I was square in the crosshairs of a bad case of Roid rage. Damn it was pretty bad. She felt bad the next day and told me more than once she was sorry. I took her on a small shopping trip to try and ease her into being out in public with her new hair. She is very self conscious and was worried about all of this. Something happened that is pretty cool. A checkout clerk told her that she sure had pretty hair!
For all you who are sitting on the fence about getting your hair cut short or maybe shaved, my wife says that she is glad she went ahead and had it done. She is still not happy with the results, but she is glad she is done with the mess and aggravation of having hair everywhere.
Hugs.
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I've gotten pretty comfortable with my shaved/bald head. I walk around the house uncovered and have in fact twice forgotten about not having hair, once when I answered the door for a delivery, they other I went out to get the mail and noticed how cold my scalp was. Infusion number 2 was pretty much par for the course and followed the pattern of number 1. 11 days or so before I started feeling alive, today on day 13 I feel pretty good.
I'm looking forward to having this next week as near to 'normal', I've noticed fatigue sets in quicker this time around, and I suspect it will continue to be so.
Jotro, your story made me laugh. Hope everyone is doing well this weekend and good luck to everyone going for infusions over the next week.
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Anyone having issues with nasal/sinus congestion? First round was pretty severe, and I thought it was a bad cold. Second round same thing occurs, only worse. Can't breathe at all through my nose. Finally called MO on call, and she prescribed over the counter steroid nasal spray, Rhinocort. Won't give immediate relief, but will lessen congestion for rounds three and four. It got so bad, I was in tears. Now I have some hope. Sounds silly, but with the pressure and headaches, and runny eyes, I just want to rip my face off.
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MJHJAM2014, after the first infusion I had some sinus congestion and blood when I'd blow my nose. I attributed it to the Claritin since I have very sensitive sinuses, but I think it was actually an infection from the tooth I had to have pulled. I'm sure the MO's advice will work for you.
Today (day 6) after Cytoxan/Taxetere, my urine looked kind of orange/pink this a.m. I've been drinking plenty of fluids. I'm hoping the Cytoxan isn't damaging my kidneys/bladder as it's been known to do as a SE. That's just what I need. Will have to watch it carefully today.
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I am having sinus issues too - especially during the cytoxan drip. Then afterwards as well - had a sinus head ache for most of my bad SE days first infusion. MO suggested just staying on claritin every day. So far so good (I'm on day 4 from of infusion 2 and haven't had to take any meds for headache pain.
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I finally let my hubby buzz it. He was so excited. LOL I have lost so much weight that with this cut I look like a concentration camp survivor!
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A friend of ours is here to help for the next 2 weeks so we took her sight seeing. This is the best spot for a Seattle shot/pic. This is me and my youngest, Elizabeth. She's my two year old terror and mini me. Haha!
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So nice to see you; I hope you enjoy the visit with your friend as much as possible! Adorable pic!
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jmg58, and jenwith4kids,
Thanks! I'll keep the idea of Claritin in mind. Improved quite a bit today, at least so I could function.
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OMG, Last AC this week. God is so good. SEs getting worse so I am glad to wind it down. Then Taxol x 4 every 2 weeks. I think the unknown SE is what is so scary. Seems like the younger women have a worse time, God bless them. At 56, hoping to live through it all. My lower back has been bugging me...new thought..mets. Is that the rest of our lives now? Can you actually get mets on chemo....man will I be mad, sad, whatever.
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Sinus problems are one of my main side effects along with the fatigue. Constant runny nose, sinus headaches, bloody mucous. I'm using the neti pot, saline nasal spray, and my allergy nasal spray. It's just clearing up now after 2 and a half weeks since my last treatment. I stopped the Claritin after my last neupogen shot but maybe this time I'll keep doing it. I also sometime take Zyrtec. Antihistamines also dry my mouth out which I don't need with the bad tastebud thing!
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lgoldie, maybe the lower back pain is from the neulasta?
Sinsin, looks like we are on the same schedule. .. happy to see you smiling!
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Sinsin. Your smile made me smile. Your girl is so cute. I see she does have a lot of her mother in her.
My wife has had some back pain. It does seem to get worse if she pushes herself to do too much. Rest and heat helps her sometimes.
She has also been having a weird appetite deal. When it gets close to meal time, I will ask her if she wants something to eat. She will not want anything, just not hungry. Then a little later (10 minutes or so) she will say that she wants something to eat and she wants to eat NOW! We can not get the meal ready to eat fast enough. : ) She has had some steroid meds before and I am trying to remember if she had this happen then. I know that this is not a big deal as far as side effects go. I was just wondering if anyone has experienced this.
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I have been having BAD sinus issues since the first TCH (now I am almost at #3). I have been using OTC saline nasal spray and put some vaseline in my dry nose, it helps a little. It's one of my worst side effects, I was not sure if I have a cold or a SE, I am sniffling all the time, bloody nose etc.
Sinsin, you look lovely. The first few days without hair were hard for me and I cried when I saw myself in the mirror. My DH was very lovely to me, that sure helped. Now I have a collection of hats and silk scarves and big earrings. We went out with friends on Sat. night and I wore make-up, silk scarf, earrings and dressed up a little. It looked actually pretty good. Now I am pretty much used to it - some people don't recognize me with the head coverings. I had our CEO (who knows me pretty well) stare at me in the cafeteria trying to figure out who the heck I was... I had twice women come up to me and told me they were BC survivors and that I look great. That was so nice.
I have gained at least 5 pounds from the steroids. I have the weirdest cravings and am always hungry.
Kiwilady - I was pretty much in your neighborhood yesterday. We visited Mission San Juan Bautista on the way back from Point Lobos. It was a lovely day.
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