Anyone starting chemo August 2016?
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Been lurking recently and thought I'd pop in for a quick update. I started TAC chemo late July and am two weeks post my second infusion. This cycle has been so much better than the first, where I ended up back in hospital for dehydration. I am pretty sure it's because I drank FOUR liters of water throughout the day, not to mention the ice chips. Fatigue was so much better the next day. Also forced myself to eat and drink the next couple of days and that made a huge difference. Today I feel almost back to normal and hope to enjoy my next 10 days before #3. The only thing about that is I had my port put in today. My MO hoped my veins would hold up, but I've got phlebitis in both veins used and the rest are just too thin. So I'm feeling achy tonight and I've read it gets worse before it gets better. Finally, my period didn't show up and I've got hot flashes so I guess we're doing the chemopause thing? Fun times.
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Sensitive, boy your hair grows pretty fast doesn't it? My hairdresser buzzed mine really close to the head. It feels weird when I don't have anything on it. Also, try using a mouthwash of baking soda and warm water several times a day after infusion. They say it is the very bast to ward off problems. I got both thrush and the chemo sores, and I had my dental appt the week before I started and have gotten teeth cleaned every 4 months for years. I think the chemo just kills off the good bacteria in your mouth and allows the not so good to take over.
I do find that my head gets cold at night. I tried a really soft cap I bought, but I find I just can't ave something around my head all the time. I'll do a wig, scarf, or hat during the day, but found at night I need a "naked" head. So last night I found a super cute, sexy new sleep look. I had a hand towel nearby and grabbed it and draped it over my head. My DH looked over at me during the night and said he thought I wasn't even in bed because he couldn't see any of me. :-)
KZ, I've never felt sick after my infusion. The first SE was the bone pain after Neulasta. Then I got the mouth issues, then fatigue. By day 8 was was heading back to normal.
Candy, hope your infusion is going smoothly today.
Bebshart, welcome. I'm sure it's very frustrating to have bc back after 14 years. I know there are so many more treatments available now, and hopefully one will control the progression yet again.
Kechla, sorry about the veins. I'm hoping mine hold up. They have to do everything in my right hand, so the poor thing looked terrible for the past couple of weeks. I know the drugs are pretty hard on our veins, but I'll try until they can't use them. It's my MO's recommendation also. Keeping fingers crossed for Monday's infusion.
Fireheart, got my blow torch and haven't singed off what eyebrows I still have yet! It's a little torch! :-)
Hope all else are good this morning.
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I need to catch up, but feeling foggy, constipated, and I think that's making me slightly nauseated. So taking the meds to combat- and stay ahead.
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I had my first infusion this morning. The PICC line works rather nicely. Keeping fingers crossed for no infection. Unfortunately about 7 minutes into taxotere I had an allergic reaction (flushing, trouble breathing and hip/back pain.) The team was all over it and was resolved in about 5 minutes with Benadryl. After about 30 minutes they started up the taxotere again with no issues. Got my lovely neulasta pod. I am cold capping and the allergic reaction came right at cap change time so one of my caps was about 10 minutes late. Hopefully no harm done. I think icing my hands and feet was even more difficult than the caps. 1 down. 3 to go
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I worked for about 4 hours and that was it. Achy body (neulesta). Nauseous and just tired. Came home and ate and slept. Walked to the mailbox and back. Resting up this weekend.
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packing for my cousins wedding tomorrow at the chateaux Lake Louise! We will stay overnight so it's a fun getaway... And gorgeous there (it's about 2 hrs from my home) I wasn't sure I would feel up to it, but I feel good.... Though I have noticed that if I get dehydrated even now- at a week later, I start getting very nauseous.... So must remember to hydrate! I found a cute dress to wear... And decided to wear my hair in a high bun, since who knows how long it will be until I can do that again, and my feet are still allowing heels so I'm gonna go for it! I think I may even treat myself to one glass of wine!
Funny how these little things like feeling normal are suddenly so exciting.
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Kechla, that was my reaction to Taxotere too, with the hip and back pain! They'd never seen it before. I've had it with both infusions and once they slow it down, it's fine. I was starting to make myself paranoid thinking it was something bone-related, but glad to know I'm not the only one who reacts that way.
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thanks nye. I'm also glad to hear I'm not the only one w those symptoms. My doctor said he has seen it before though. It was kind of scary since all of the nurses an my MO were there in an instant putting oxygen on me, taking BP, turning off the chemo and starting the benedryl. By the time it started getting harder to breath, they were already ahead of it so it never got really bad. They couldn't check my oxygen for a couple minutes because my hands were too cold to register. On the bright side my Reynauds did not give me any trouble. I kept my core warm with a couple heating pads.
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Kechla, so glad you responded to the benedryl. Do you have to get the picc line flushed every week? That was what I was told and it's a drive to my center so I'm still trying the veins.
My unbelievably sweet DH came home this afternoon with his head buzzed in support of me! I had no idea he was going to do it (and probably would have tried to talk him out of it) but I was so very touched that he would do that for me. He keeps telling me how great I look and I told him I'd loan him one of my wigs! :-)
I keep getting headaches, anyone else have that? I still haven't been nauseous once, and my taste buds are back pretty much. Just get tired each afternoon. Next infusion is Monday so will see how it all goes.
Hope, have a wonderful time this weekend! And even my MO said a glass on wine once in a while won't hurt us.
Hope you're feeling better ajbclan! I took something the first night after infusion for constipation just to be on the safe side. My luck, I'll probably have the opposite problem next time!
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Dara, yes, picc line needs flushed weekly. I think it will be the best solution for me.
How sweet of your husband. Mine said he would if I lost my hair. So did my daughter with long longhair and I told her that it was a sweet gesture but absolutely not!
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I have been getting headaches too and I never get headaches. On the third day after, they show up. Kind of in my neck and back of my head. I have a cervical fusion, I thought maybe bone pain from neulasta shot.
You all have sweet supportive husbands like mine, but if he shaved his head it would not be too big a sacrifice, if you know what I mean
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So funny jiffrig. I feel badly that I've bought two wigs, a bunch of scarves, etc. and now his head is equally smooth! My headache is in my neck and across the fort of my head. I don't get headaches either. And the only thing that works is Advil which I was told not to take. hmmm.
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Dara - Good thing you haven't torched off your eyebrows. But if you do, I'm pretty sure your DH could hot glue something on in their place.
I am wondering too if I will be able to tolerate a hat at night. I bought a very sheer sleeping cap. It feels great when I try it on. But I tend to sleep hot. I have a set of SleepPhones (fleecy headband with embedded ear phones). On nights when I use that, I sometimes wake up and find I've flung it on the floor in my sleep. May have to try your towel mummy option0 -
Kechla - Love the infusion pic. I have opted not to ice other than suck on something frozen during my Taxol infusion. I tend to get cold easily, and once my fingers or toes feel that way I am miserable. Just can't imagine icing them. Sure hope and pray that you ladies who do that achieve the intended outcome. I'm taking my chances as is. That's wild about your reaction. Glad to know your team was all over it and that you could complete your round successfully. I will keep you in my prayers.
Hopefloats - Your trip sounds phenomenal. I would love to visit Lake Louise. Enjoy your family, your dress, your hair, your heels, and everything. Let us know all the fun details. Must say that since it's dawned on me that you live in Calgary, I've found myself singing Alberta Bound. My hubby's aunt lived in BC for many years and gave him the Gordon Lightfoot album (you know, those old time black spinning disks) with that song on many, many years ago. Every time we hear anything remotely related to Alberta we both break into the chorus. Think I'll sing it in your honor this weekend.
KZ - So sorry you have had a rough day. Definitely listen to your body and get all the rest you need.
Gotta love those hubbies who shave in support of their wives. Very sweet of your DH, Dara, to surprise you like that. If he wears one of your wigs, I think you need to share a pic. We promise not to make it go viral. Jiffrig - I told my hubby the same thing you did. Not much of a sacrifice to shave the 7 hairs on his head. Haha!
I had headaches after the first infusion, but none after the second. Had a hard time deciding if they were related to my seasonal allergies or were a chemo SE. Since my brain surgery last year, I also have a tendency towards left sided tension headaches. So that factors in. Waiting to see what happens since I had round 3 today.
Speaking of round 3 - that puts me 1/4 of the way done with my weekly Taxol/Herceptin regimen. Yay! After next week, I'll be able to say I'm 1/3 of the way done. Still will have the Herceptin every 3 weeks for the rest of a year, but after 12 weeks straight I'm hoping that is much more manageable.
I worked this morning. Traffic through the the high tourist area here in PA Dutch country was crazy. All those mad quilters out to buy fabric here in the quilt capital of the region. And of course those crossing the street never look because they're too busy gawking at the Amish buggies and other sites. Ah, the joys of living and working where I do.
Anyway, I made it just in time for my labs. Then ate some lunch and caught up on work emails (always crazy the first few weeks of school). My infusion went okay. But somehow the tower didn't work right. I'd had my steroid and the nurse started the Benedryl. I was working on a watercolor using some things the art therapist brought me and was feeling super - thought, "Wow. My body is really adjusting to this med. No lightheadedness or woozy feeling." Then the nurse discovered it wasn't dripping. *face palm* So much for that. I do have to say, though, that when they tweaked the release time for that after infusion #1, I am doing much better with it.
Art therapy was fun. I painted and we talked about it. Hung my artwork on the fridge like a kid. Drove home. Investigated the progress on the siding job we're having done. Thought I'd like to take a walk. Plunked down in the porch hammock and woke up 2 hours later. Fatigue 1, Desire to Exercise 0.
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Well, I did it! I went through my first chemo treatment and it went well except for the hot flash I got during the Taxotere. I was sweating but then it went away. When they did the pre-meds (not sure what was in it) but I felt sleepy and kind of like I do on Nitrox at the dentist's office. All kinds of things were popping in my head. Then that wore off. I also got a free knitted cap which was very sweet of those who donated them. You could choose the colors you liked. So now I have one turban and one knitted cap, but no wig yet. They have free wigs through the American Cancer Society. All in all, it was not bad. Thank you for the encouragement. We'll see what tomorrow brings. Hope everyone is doing well.
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Candy - Glad to hear you got through your first infusion well. Benedryl is the premed that makes me feel out of it for a bit. But it resolved by the time I'm done with treatment. Looking forward to gear how you're doing tomorrow.
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Candy, congrats! I think it's more the unknown that we all have trouble with. Hope there are no other SEs. think most of us find that by day 6 or 7 we are definitely feeling more normal again.
Fireheart, I think your art therapy is so cool! You should take a picture of your art and post it. Sorry about the traffic, but it's great to be so close to the PA Dutch area. Of course it's probably not so great during peak tourist time!
Lori, how are you doing? Hanging in? You said the second infusion zapped you and I'm hoping things are getting better now.
Michelle, you're still starting this week right? Hope all goes smoothly.
Annie, how are you feeling?
My hair/head is kind of weird. Part of my hair is continuing to grow while other parts are still smooth. I guess everyone doesn't lose all the hair. We'll see what happens after this next infusion. Still have a few eyebrows and still have eye lashes. Headaches continue. I thought it might be sinuses with allergies, but no other symptoms. Thought it might be stress also that I'm ignoring. I really notice a difference when I massage the base of my neck which I think is more tension.
I'll ask my MO on Monday.
Happy Saturday, especially for those who work. Weekends are really needed! I need to update our member list.
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FOR THOSE HAVING LYMPH NODES REMOVED:
Go to: http://brace4life.wixsite.com/b4life to get a FREE lymphedema risk bracelet. They could use more than two partners to give away these bracelets, so ask your local cancer center, fire department, or hospital if they'd be interested in participating! When you have even just a sentinel node removal, you are always going to be vulnerable to lymphedema. I just had the level one lymph node dissection done, and I'm ordering a pretty medical alert bracelet from Amazon, but it can't go swimming with me, so I want this freebie silicone model to wear in the water. I like that I can turn it upside down so the lettering doesn't show unless I want it to.
I always knew that firefighters are heroes, and they just proved it again in Connecticut.
Also, I found a neat site for alerts that are much prettier than I've ever seen. I will order a tag and make my own beaded bracelets. https://www.laurenshope.com/
I'm thinking of you all and hoping that things are going as well as they can. I will be signing up for lymphedema clinic and seeing my SO for the first post-op visit on Tuesday, but I am doing exceptionally well. No meds except for some ibuprofen.
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Hi Everyone-
I'm so out of it- so just wanted to thank those asking how I'm doing lol.... feel crappy- like a super bad head cold? Still a little constipated, but hopefully getting better. I've briefly scanned some of the posts, but can't do justice to them just yet- but i know that I'll swing back out of this. Crazy how it's- hey- don't feel to0 bad, and each day feeling worse- so curious if this is the bottom and i'll swing back out the other side. Definitely could be worse. Enjoy your day!
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Morning y'all ... My #2 infusion will be Tuesday so I am going to enjoy my weekend... I felt pretty sick about 3 days after my first infusion for a few days but including all the sore bottom area issues I survived & pray SE are no worse just realize each time they last a bit longer. I am not as brave as y'all to go get my head buzzed. I went and got a short cut tho .... I am not sure that would empower me like others feel. About now I feel pretty small. I am so thankful for our group though ... I can be brave on the outside but you all know there are moments of sadness that hit ..I just won't let them take over. My DH has about 10 hairs too... So we will be a pair. He did try on my wig tho!
I am missing work .... our school began Monday & my MO said I can not be around sick little kids. 🤒
Welcome bebshart ... My friend just gave me biotene I will have to try it.
Welcome Leydi ... I just drank cold water during my infusion & someone brought me an iced chai tea yum! I did rinse my mouth with baking soda & salt water for a few day and thankful had no mouth sores.
Hopefloats ... Hope you're weekend is fabulous and it's a nice distraction from all this...
ajbclan .... I am having Chemo ... Surgery ... Radiation. Hope your feeling well.
Sensitivehrt.... Great picture .... I must check out head buffs.
I am ready with my head gear ..wig ... Wraps, scarfs, caps, now I need some big earrings to rock the look. I really don't feel like I rock anything right now but I will give it a try.
Hope you all have a great Saturday and praying for those having a rough weekend. 😘
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Ajbclan, so sorry you feel so yuck, and yes, the first few days I felt like crap and barely got out of bed. On day 7 had an appt with MO and my DH had to carry y purse in for me. Then afternoon of day 7 turned a corner and was soooo much better. Still get really tired but at least feel more normal.
Cali, I completely understand. I can't say buzzing my head empowered me. I was just tired of all the handfuls that came out and I could really wear my own hair anyways because it had thinned so much. I still have my eyelashes and some eyebrows. Noce not to have to shave legs for a while! I think we all just do what makes us feel most comfortable. I'm finding scarves are the easiest, I think because I can adjust the tightness. I laughed so much last night because when I was going to bed, my DH and I rubbed buzzed heads together and laughed! I do find I'm so much less self conscious around the house with nothing on my head now.
Unwilling, you are so creative both with your bags and now beaded bracelets. Post some pictures. I bought a pretty bracelet on Amazon also. I turned it around and put the alert part on the inside of my wrist so it just looks like a pretty bracelet.
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Dara thank you for the encouraging words ... I think I will need to get a few more scarfs ... I bought a couple & they seem light and colorful. I am losing hair like crazy today so I guess I spoke to soon... Not fair to still have to shave though ..lol
Did someone mention we aren't suppose to floss our teeth?? I had no idea.
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Unwilling, I've worn my Medic Alert bracelet while swimming and in the shower hundreds of times over many years. Mine is a two-tone expandable band like a watch so perhaps others aren't as durable. Thanks for the tips though. :-)
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Caligirl - I read in the literature for my chemo drug to avoid flossing. But my MO advised that if I were a regular flosser and used a very soft floss I could continue. Only to stop if I noticed bleeding as that could be a route for infection. Also, the Taxol in my infusion can inhibit one's clotting factor, so there is a risk for bleeding. The hygienist at my dental office hooked me up with some gentle gum care woven floss, and I bought a bunch on Amazon. I have used that 2x daily and am VERY cautious near the gum line. I have some gaps that are food collection spots, and I think if I could not floss it would be a mouth care disaster. That said, you should definitely check with you MO. Every person and every chemo protocol is unique.
Thanks to all for sharing about your medical alert bracelets. I want to find one that is pretty but also doesn't get ignored by medical personnel as just a piece of jewelry. It wasn't until my node biopsy that I noticed how often I DON'T get asked if I have a preferred arm for BP. Yikes! I've considered (not seriously, but thought about it) a huge tattoo with an alert not to use that arm.
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Hi Everyone-
So side affects suck, right? lol Looks like I have a couple of folks doing the chemo, then surgery with me (KZ1966 and Cali).
I think the constipation just added to other issues like nausea but doing better. I don't like taking pills for whatever, but I'm doing it- it's that balance of "senokot", now Zofran? I woke up with a white coating on my tongue. I did really well with washing my mouth out the first few days- cut back a bit yesterday. Took my temp (fine) this am and called the Dr's office- he said keep rinsing (he said warm salt water or mouthwash). I seem to like the Biotine the best but trying to mix it up. Drank a cup of coffee and that "burned" it off a bit lol.
Aches aren't as bad today- for those of you that haven't experienced it- it's a weird feeling- tingly, sharp, achy....so weird trying to figure out what the body is doing.
So I'm hanging in there- looking forward to feeling better soon. I was bummed at first that my bad days might hit the weekend with the family, but realize it's better- I don't have to try and drive the kid to school etc (I do have offers if needed).
Thinking of you all....
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Definitely agree the side effects suck but lasted about 2 days. Still some fatigue. The aches and pains were the worst. I first thought that I slept wrong as my neck hurt but the pain worked it's way down my back. You could blow on me and it would hurt.
Tummy is feeling a little yech but went and got some dulcolax and see if that helps
I did do something fun today - laundry. Yay
Hang in there everyone, we've got this!
Have a great day!
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I'm doing laundry too, KZ. Waiting for the fun to kick in. LOL
So just wondering... Do you all find that some people seem compelled to tell you about all the folks they know who have a terminal CA diagnosis and have been given a short life expectancy from their docs? I had that happen to me this week. It was already one of those moments when I was feeling kind of emotional and overwhelmed. And a coworker decided I just had to hear about this person that I don't even know and about how horrible the situation is. Believe me, I have total compassion for the person. But talk about adding insult to injury. I wonder if it's worth telling my coworker that it's probably not a good idea to do that to someone who's dealing with her own diagnosis and treatment. I know she meant no harm. She was desperately trying to find a way to let me know that she care and feels heartbroken for me. I appreciate that. I also know that wherever I turn there is a story of someone with CA. It's inescapable. I'm no Pollyanna, but I also don't want to be doom and gloom all the time either. Am I just being too sensitive?
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I just started chemo this month. Weekly taxol and herceptin. Every three weeks I get perjerta. I'm new to cancer, new to this group. I'm very afraid but hopeful. Good luck to you. I've found a lot of information on this site. Stay stron
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Fireheart - kind of had that happen today. My stepson was telling his dad of a client he has that is terminal. My husband was telling me and although I didn't say anything, other than how sad that is, I sure don't want to hear that!! My personal opinion is, it's insensitive. Is it supposed to make me feel lucky? Like I only have BC?
It's just like people saying, you'll be fine, stay positive, be strong. I know all that thanks! Hearing it from people here is different than someone who has no clue. We are each other's strength some days.
I personally don't feel you're being insensitive at all.
As for the laundry - I'm still waiting for the fun part too.
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