Anyone starting chemo August 2016?
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Folding is not the fun part. I guess the fun will come when I can wear clean clothes.
Feeling nauseated tonight. Ugh. The dinner I made is now less than appealing. Good thing I'm stocked up on bland foods.
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Hope you feel better fireheart. If it makes you feel any better, I had cucumber for dinner
Nothing sounds good
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Fireheart and Kz, I think it's perfectly fine to very kindly interrupt them and say something like, You know, I really appreciate and feel for XXX, but every case is different, and I'm just really focusing on staying positive with my diagnosis. I learned that lesson from my sister who just really turned away and put up a wall against negativity. I agree that many people are trying to connect and frequently they just have no idea what to say. We all are very much aware of the seriousness of our dx. And if anyone takes offense at our reaction, just blame it on "chemo-brain."
ajbclan, hope you're feeling better this afternoon. I've had a problem with constipation after a number of surgeries and a pharmacist recommended using Miralax a few years ago. Now I start that first night taking it and I had not problem whatsoever.
cali, I've also heard that using a water pick is a great alternative to flossing. I think we just need to be careful of anything that can allow an infection to enter our bodies right now.
Well, as I sat here typing I realized on $%@#, I forgot to take my steroid pills this morning for the pekoe to treatment. Raced in and took two. Will have to take two more later on and that probably means no sleep tonight! Just too many things to remember.
Did someone say there's a fun part to laundry? I guess I've been doing it wrong all these years!
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Oh, and Caligirl, someone had posted some videos and website for scarf tying called Wrapunzel. They are Orthodox Jewish women who both sell and teach you how to wear beautiful scarves. (They are called tichels in their religion) You can also find one of the women on Youtube. Tying a scarf isn't as easy as you'd think, and I bought a number of them from their website and have watched several videos. I also had a hard time finding scarves this early out here (many stores haven't gotten them in yet) but I found a huge selection of very light weight colorful scarves at Nordstrom Rack for $9-$12.
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DaraB i've been thinking of you with your next treatment- tomorrow, correct? Glad you remembered the steroids! KZ1966 and fireheart- I guess I "assumed" I'd feel bad then swing out of it, but I can see you swing back and forth along the way! Stinks.
Who has treatments this week besides DaraB? Wishing us all a smooth week...thanks for all the tips, comments, etc- I'm not very good at addressing everyone but want you all to know I appreciate it all!
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Kenzielulu also has it tomorrow I believe, but haven't seen her post for a little bit. Hope others we haven't seen for a bit are doing OK also. Sometimes I get behind on posts and may have missed them. Hope all are well. I know WenchLori said the second infusion kicked her butt so am hoping she's doing better and that I don't have the same reaction! Keep you all posted.
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It would be nice if we could know "it's gets better, it gets worse", etc! I think the anticipation each time is hard. Thinking of you all! time to scratch another one off DaraB, Kenzielulu and WenchLori!
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I started chemo 8/16/16 for Stage 1 triple negative. rough first run, very nervous for 2nd round
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Welcome tishabe -- you've found the best place for support -- so glad you found us!
Big hugs, it will get better!
--The Mods
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Hi guys... I'm back! It was fun...but to be honest I just wanted to be home in comfies.. I'm glad I went but I was exhausted by the end.
Sorry to hear that round two seems to be rough for many. Please take care of yourselves!!! This next week is going to be pretty low key. Kids are on their last week of summer holidays and are starting hockey tryouts for the season. I hope I can keep my energy level up.
Ok girls... Dealing with a TMI issue and hoping some here can relate. Since Friday, when I pee it hurts like madness. I wipe and see blood. My urine is clear of blood, and I had a hysterectomy 5 years ago... So not related to anything there.... Has anyone had torn/raw skin down there? I'm thinking somehow I gave torn skin there that is burning/stinging when I pee and causing blood to get on the toilet paper. Sorry.... I know- gross... But you girls are the only ones I have to ask!
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Welcome tishabe, but wish it weren't under these circumstances! Sorry about your first round. Are you every 3 weeks or every 2? What treatment are you doing? Thinking of you.
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Hi
I am doing tc every 3 weeks. I was told at the hospital my oncologist will talk to me the day of my next treatment and will come up how to proceed. Not sure what that means but I guess I will find out in 11 days
So glad I found this site, feel like I can freely say how nervous I am.0 -
Hope- that doesn't seem comfortable at all! I'd def check in with the dr but I'm assuming dry skin and the ramifications can happen all over. Like you don't have enough to deal with. There no TMI here!
Hi tish- welcome- I wasn't a big poster in the beginning but this group lets you do what you need to do and supports all the way around. I'm glad you found us.
One nurse friend thinks I have thrush. I messaged my dr so hopefully they'll respond first thing in am. She hasn't seen it I just texted to her. Stomach is deciding to shift the other direction a bit. Good lord! Lol.
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Welcome Tishabe and any newcomers,
I was very nervous to start my chemo also. I am going every 3 weeks . My first infusion wasn't as bad as I thought it would be, hoping the next 3 won't be too bad. Then onto radiation, which I heard doesn't take much time but it is everyday (except weekends) for about 5 or so weeks. My 27 year-old son is a smoker and I've begged him to quit but he says he can't because his life is too stressful right now. I offered him a challenge. It was that on the day I lose all my hair, he would stop smoking or he'd have to shave his head. He said he'd shave his head. Wrong choice. I don't want him to get lung cancer. Maybe he will get inspired to quit while he sees me going through treatment.
Good luck to everyone this week.
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Hope, I had read quite a few posts in the July chemo thread, and a number of women spoke of extreme vaginal dryness. They did finally get a prescription I believe, and also recommended over the counter Replens. I'd definitely ask the MO about it. So sorry for that added bonus!
ajbclan, I actually took a picture of my tongue and showed it to my MO NP. She looked at it and said, yep you have thrush. It comes from the chemo killing off the good bacteria in your mouth, similar to post antibiotic if you've ever had a yeast infection. My MO said to use biotin or salt and warm water rinses and also baking soda and warm water rinses up to 8 times a day. I found the baking soda worked best. My NP said Biotene is basically baking soda. They also gave me a prescription for some rinse, and then I also got the canker sores so they gave me a horrible prescription that contains liquid lidocaine. Check with your MO and they should be able to give you something to help. I found the salt burned, but the baking soda did not. I was miserable for about 5 days. Lost all taste buds as well, and then my mouth felt like I burned it for an additional week.
tishabe, we were all so very nervous for the first infusion. It's the unknown that was so hard. I think I can speak for most that all we anticipated and feared was far worse than reality. It certainly isn't fun, nor the aftermath, but once you have the first, you'll know what to expect and can check one off the list. I'm just think that after tomorrow I'm halfway done! Of course at this point, I'm more concerned now for rads. I guess we'll always have a bit of worry lurking somewhere. Hang in there.
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Hello all!
I've been following this board and finally decided to officially join this club none of us really want to be part of. I've been feeling too much like a stalker and need to come forward!
I'm an every other Friday chemo gal with my 3rd of 4 AC infusions coming this Friday, Sept 2nd. Then I switch to Taxol for 12 weeks before radiation.
Someone mentioned free wigs trough the American Cancer Society and I wanted to tell you all to check out your local offerings through them! Last week I attended a "Look good, feel better" class offered at my local hospital and learned some cool makeup tips and received a bag full of great makeup and brushes. I have to say, I walked in there feeling pretty crappy that day and walked out feeling much more confident with my current self. Coming to terms with the hurting, scarred and newly bald me is a work in progress.
I've learned so much from you all this month and am grateful to have found this group. I hope everyone sleeps well tonight!
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DaraB you're smart checking the July posts! Interesting that the NP didn't give you an antibiotic, but I'm open to whatever....appreciate all the feedback!
Welcome Wonderwoman- I always thought I'd be more of a stalker, but it's been a great way to get things out here....
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Hi All!
Read daily, just not a good writer and can't keep up with the number of women joining site. so, i do read frequently and keep up with posts, just don't respond alot. my IPAD doesn't like the typing requirements and it takes forever. Good thoughts to all.
I've had second AC infuse, and will do the third on Sept. 6th. I'm worried about wenchlori, as she usually keeps us updated but she hasn't written in a while. Hugs to all, and DaraB you rock! As do all of you.
Lets talk SE's: I'll try for abbreviations, but get irritated with having to refer to another list to see what they are. I'm kinda over it.
I shaved head awhile back, but now the little hair that was left is falling out too. Like a dog shedding, i'm thinking a hand vac would be just as easy to clean up the little hairs. they are a little prickly too. It wasn't like that after i shaved the first time. they are dead now too, thus the shedding. i can even feel it.
Like wenchlori, after 2nd infuse, was fine until day 3, then slept from wednesday thru friday. always a slight headache around, and this time i dropped almost 10 pounds. I found i don't need the anti nausea meds nearly as much, took one on infuse evening, but that's all i needed. just not hungry, and again like wenchlori, just trying to stay hydrated. that is difficult. i'm eating the watermelon the ladies suggested here, and doing everything in my power. I absolutely just can't stand water, or anything remotely close to it. losing 10 pounds not a big deal for me, as i am eating frequently thru day, and healthy foods. only 40 more to lose to be at my ideal weight.
the Vajajay, AKA vagina, very dry too. i have a spray bottle and no longer use toilet paper at home. i don't think i have a yeast infection yet, but haven't bothered checking that out to much. i figure when the itching gets intense, ill know and go get monostat. previous women on this site recommended the spray bottle, and they were right on in my case. i didn't think it could get that dry, but i was wrong. but then everything on the body is dry. again, for me, not a bad thing. I have acne prone skin, and cystic acne as well, and the chemo has fixed that right up. a positive for me.
Eyes are even drying out. I wear contacts, so i use eye drops to hydrate before i put contacts in and that has worked.
hair in nose rapidly going, so blowing nose is weird feeling, but getting used to it. Vajajay hair is falling out as well, and no hair growing anywhere. My MO said only my head hair should fall out...uh huh. I'm not complaining, because i don't like shaving anyway. but nose hair too? yep. i don't have to pluck under my chin for the wild hairs, and that slight mustache is definitely gone....
stomach has been biggest issue for me...never know if it's upset stomach, gas, indigestion or what. I'm done guessing. So, i eat very bland food all the time now, and i take a gas X pill daily for now. I don't want to become dependent on Senekot so i take that every few days if i don't have BM. Such a gross topic to discuss. but it works too. so no constipation or diarrhea yet. I also drink Ginger tea on a daily basis. That rids me of all stomach problems immediately...the nausea, or the feeling i might be nauseous, or gassy or whatever. I swear by the ginger for me. of course, that involves water....but i can stomach it because the ginger is so strong.
I Always use baking soda wash for mouth and use it frequently like everyone else, it is working. Eating is a problem, foods tasting weird or bad, and because overeating is problematic for my digestion as well. i can have one egg, not two, etc....sometimes my stomach hurts from being so hungry, but full at same time because putting anything in it distends it a little and makes me feel full. i'm getting used to that as well. and adjusting to it.
all in all, SE's are manageable for me, if i stick to a strict schedule. I get lax, but the chemo serves a quick reminder to me that it does not get lax. and it is unforgiving.
I equate the infuse week, for me, like a bear going into hibernation: I'm ok for a day or two after infuse, eating enough to sustain, then go into sleep mode for a couple days. Then, come out of hibernation and forage for food and live life...engage with people again, and feel like talking again.
Everything has been manageable, so for that i am very grateful. Still worried about little wenchlori, so sending prayers her way.
I also went to a casino and gambled one nite( it was night 6 after 2nd infuse). Felt immensely good for going, but had all the following thoughts: everyone smokes in here, so my immune system is down, so now i'm probably mets to my lungs....etc... i know it's not rational, but its the thoughts that came to mind. Still glad i went and had an absolute ball! felt "normal" for the first time. no one stared, except those few who were more curious than anything. my husband feels compelled to wear his hat that says "i support my wife...." that shows the BC insignia. works for me.
Keep writing if ya'll can. It makes it easier for all of us. and i think of ya'll frequently, even if i don't mention you by name. I read everyone's posts and it is comforting.
For all you moms out there dealing with this stuff, you are an inspiration. For those that came before us, I thank you for your input and wisdom and spirit.
Hugs to all,
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Welcome tishabe & wonderwoman to our fantastic group. I have triple negative also tishabe.
Hopefloats ... I had the worst yeast infection and it was bleeding every time I wiped. Wish I had read the squirter bottle tip before. This time my PA gave me a Rx since the over the counter stuff didn't help.
Ok what am I missing .... I've been doing laundry today and must of missed the fun part 😳
Dara I'm glad you remembered your steroids .... I have mine out so I remember to take them tomorrow for my Tuesday infusion. Thank you for the scarf tips. Maybe I'll go to Nordstrom rack before my bad days start. I went to hobby lobby's grand opening after my first infusion just because I had to 🙄
I will go on Amazon to check out the floss and I still need to check out the GUM tooth brushes.
Kenzielulu my contacts have been so dry also ... I have to use re wetting drops in my eyes all the time now. I'm just dry all over.
Hope y'all have a restful night ... Dara will have you in my prayers
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Here I am! 4am and starving. Lol. Had a cracker but getting crazy heartburn all the time. I don't like taking pills etc so even taking a tums is a lot for me. I will call MO today sometime.
First chemo was friday. Not so bad at the hospital but man did I get hit hard at home. Nausea hit fast and furious about 3 hrs later. Rough sleep night 1 but great sleep night 2 and not bad last night. Got out for a bit yesterday. Took my LO to the park. Was nice.
Was hoping constipation would not be an issue but it is. Ugh. Hopefully start something today.
Hoping each day gets a little better.
Xox to you all!
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Haven't been on for a while. Had a bit of a break-down and cancelled my chemo last week. I was packing my stuff the night before chemo and fell apart. I think it was partly because of the rude PA and partly because I went too many nights with less than 2 hours of sleep. Plus the day before they didn't get my insurance approval until 3:00 so I had to take my steroid at 3pm and 7pm then realized I was supposed to take two at a time not one, so had to take two more at midnight. Oh, I just thought of something, I hope my melt down wasn't a side effect of the steroid--maybe I should look into that.
I told my MO's office that I was cancelling until I got all my questions resolved (that the PA was supposed to get back to me about). They were very nice but it got a little strained as I went through my list (four items is all) so they could be prepared at my appt. as some require answers from my doctor. At one point on the phone, I found myself telling the nurse, "I am perfectly aware that my ovaries are not in my toes". The look my husband gave me was priceless. Took everything in me not to crack-up.
Laughter sure does help (and a good night's sleep). I have a breast prosthesis (getting my reconstruction after chemo) and it is this soft pillow with tiny beads in it and feels really cool to touch. The kids love to touch it (when I take it off--which is the minute I walk in the door) and I've had to tell them more than once "STOP TOUCHING MY BOOB!" (they have sticky/greasy fingers). The first time I said it, my son (10) froze and we stared at each other for a second, then we both burst out laughing. Yep, the dialogue around our house sure has changed. Awkward is the new norm. Now it's "Mom! You forgot your boob" as I'm going out the door or "Don't put my boob there, the dog will think it's a toy". Lots of boob jokes. I texted my sister after my MX surgery: "OMG it hurts so bad, it feels like my boob has been cut off, oh wait....nvrmd". I need to find some new boob jokes if anyone has any.
Gotta get caught up on all the posts!
Love hearing all your stories and think about each of you every day.
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Ok, guys, I thought I had this. I started chemo Thursday. My baby is with Grandma, First day, tired, I slept all day... no biggy. OMG--LET ME JUST SAY I WANT TO DIE.. I have never felt so sick in my entire life, and the pain, well I had absolutely no clue it would be this bad. Yes, I'm a bit of a sissy, but I'm also completely alone. I can't eat, can't drink, I'm forcing water. I can't sleep. I don't know how I would handle it if she were here. What in the world was I thinking? Holy Moly The sickest I've ever been doesn't begin to compare to this....how come no one told me that? You all say it's "doable" I'm not sure I agree. Yesterday was the worst day of my life as far as pain and sickness. (and it's a weird sickness, one I couldn't hardly describe.) Wanted to barf, but couldn't, the muscle and bone pain was unbearable. I also had no pain meds...Insurance loophole, too many scripts this month... Just wondering who else has experienced this and does it get better or worse? Not sure I can hang!
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I forgot to mention, if you are on Zofran (anti-nausea), it caused me EXTREME constipation. Had to be on it through both pregnancies and my doctor almost killed me when he found out I was going #2 about once a week. I had to work hard to stay ahead of it. Unless you're having the opposite problem, then maybe it will be a good thing. Stool softeners and Miralax work best for me (and of course water water water). Narcotics also cause constipation so be especially careful if you have to take both.
I've heard a few people mention their doctor's told them not to take NSAIDS (Advil, Aleve...). Does anyone know why? My MO said to take Aleve the day before, day of, and day after the Neulasta injection along with Claritin. I've had an NSAID induced ulcer, so it worries me a bit. She also said to take Alpha-Lipoic Acid and B6 for bone pain from Neulasta, but NOT on day of chemo. They won't give me the Neulasta pod so I have to go back the next day but the good thing is they're going to give me IV fluids with my Neulasta injection which I'm happy about because I want to flush that chemo out as quickly as possible.
Have any of your doctor's recommended supplements to take or avoid or any foods you should eat or avoid?
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Oh crap Kacey, that is awful. I certainly have read that it can feel like you're dying and worse than the worse influenza. I was hoping since everyone was handling it so well on this post that maybe these were easier chemo drugs than the stories I've heard. That absolutely sucks. I know it hits everyone different, but it does seem that most people on this post seem to start getting better around day 5 (I think) so maybe you've gotten through the worst of it?
Call your doctor on call and make sure they know exactly how really bad off you are. Make them give you something to help the pain, or maybe you could go into their office Monday morning and get IV fluids. If you've gotten dehydrated, it makes every single pain so much worse. Maybe an IV with some pain meds, anti-nausea meds, and something for sleep and anxiety like Ativan would help and maybe that would get charged differently than prescriptions, maybe?
This probably doesn't apply but just in case, since you are saying it is hard to describe the feeling, if you are on compazine or phenergan (anti-nausea) you can get horrible panic attacks as an SE. It's an unidentifiable horrible feeling that I will never forget. Had one once in the hospital after they gave me compazine for food poisoning and although it helped the nausea it made me feel so HORRIBLE, I preferred the food poisoning . My nurse told me she once had to literally lay on her patient (she was a flight nurse) to keep her from trying to jump out of the plane from the compazine SE. I can tolerate Zofran though. They gave me Zofran (anti-nausea) melts in case I can't keep anything down. Don't want to scare anyone but you should know that some side effects can be from the meds not just the chemo.
Of course don't change anything without asking your doctor. Anti-nausea pills can keep you from getting dangerously dehydrated.
Hang in there and call the doctor on call now, you shouldn't have to suffer this much.Wish I could do something for you.
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Hello all, I've been lurking about this board for a couple of days and reading all of your experiences. I am actually on the Sept. chemo board as I will likely be starting in 2 weeks. VERY SCARED!!! I will find out today exactly what is happening. I am terrified of the side effects! MO told me "Oh, some people have no side effects at all". Not from what I'm hearing! This is scaring me to death. And another thing, how are you all dealing with hair loss? That part for me is even worse than side effects. But the bottom line is that I will not be able to miss work. I have rearranged my schedule so I will have several hours during the day for treatments and rest, but there will be time each and every day that I have to be alert, be able to drive, and be able to function as my normal self. Any suggestions? I thought I would ask here since you all have experienced this. Thanks!
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seq24, could you schedule chemo for Friday so you have the weekend to recover? If you can get down a ton of water during and for the days after, you might do okay to work for a bit each day. Definitely not possible for me until at least the fourth or fifth day after the infusion, but if I really, really had to...I think I could, just about.
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nye-thank you! My infusions will have to be on Friday because of my work schedule. I will go first thing in the morning but will need to be done by 2 so I can work from 2:30 till 5:30. Weekends will hopefully be enough to recover and I may have a little help on Monday for work. I already told doctor that if I have to do chemo (basically they are saying I have no other choice) then it will have to be on MY terms, which will be Friday. I'm concerned about driving. I may have to take myself back and forth to treatments because husband can't always be off work. I've heard drinking lots of water helps and I normally do that anyway. Are we talking like gallons of water, because I don't do that. If side effects last past Monday then I am in big trouble as far as work. I have a child care business in my home. I have 6 kids in my care, all of them in school full days. I have them for a while in the morning, have to take them to school, then I am free until about 2:15 when I have to start picking them up again, then keep them until 5:30. Does this sound doable? I am not sure which chemo meds I will be getting. Will find out this morning but regardless I am scared to death of how this is going to affect my daily routine. I had to resign from my other part time job I normally did when kids were in school to leave time for appointments and rest. I have worked too long and too hard to build my business over the years and if I start missing a bunch of work, I will lose that too. I appreciate you input. Thank you!
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Good Morning! First off- took me a while to catch up- I'm trying to save some of the emails as I can't scroll back on here or I lose what I type.
Seq24- As we are all learning, everyone can have similar SE's, but they hit differently- and as I learn from others- seem to affect folks differently as each treatment hits. For ME- chemo day, the day after- I was pretty good- could be active and maybe just felt a little tired. Day 3 I slowed down, achy, Day 4 I would label the "worst" day, 5 still pretty out of it, and now I'm at Day 6 and moving and capable but tired.
Kacey- oh my gosh I'm so sorry! I haven't felt well, but I've been pushing fluids and food. I don't have a baby- just a 13 yr old who I can't seem to self motivated but still. I agree with the others- call your Dr! The NP told me that I shouldn't have to feel the SE's, to take things she suggested and if they don't work, call. So please do call.
Kenzielulu- so appreciate you being frank with how it's all going- I hate the 2nd guessing and trying to figure out should i take something etc. I'm not much of a tea drinker, and so not sure how ginger will go over with me, but I'm open to every idea lol. Loved your story about the casino- funny though how fast my thoughts have changed about even going into the office (even though I usually work "outside")- those vents, someones always sick- I'm thinking might not be worth it.
Ok good to know on the squirt bottle- just adds to the "fun". Oh speaking of- so i get my menstrual cycle yesterday? NY1980- I guess I can't even get rid of that as you said pages back!
Seq24- maybe we should just think that those that aren't having bad SE's aren't posting? Wishing you the best- glad you found both boards- I think DaraB was super smart going back to July. It's hard to keep up with all the possible SE's for sure...then you start 2nd guessing everything your body is doing and feeling.
Lisbeth- thanks so much for posting that a SE of the nausea pills can be constipation! Seriously- I think it was the constipation that made me nauseated but then I'm like "I'M NAUSEATED" and took a Zofran lol. Thanks for being so open and frank on both ends- the fears, the tears that randomly come, and the then laughs.
Caligirl has some good ideas on the mouth- I bought a waterpik, but still need to set it up.
Hugs to you all....one hour at a time ladies......
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Well, I started my chemo on 8/25/2016. It went like a snap, except the warmth of something, I can't remember, they put in. Felt it enter and go up my arm, then the feeling eased. My husband was with me all the time, which was so helpful. He pretty much watched TV and me. LOL I was given no anti nausea meds. It was suggested that because my veins were pretty good, that I not go with a port for now. Sounds like everyone here is getting a port. It kind of makes me feel uncomfortable that they didn't feel it necessary. The young lady that supervised my infusion was very kind and positive. She explained how the infusion would go in the future. She actually made it easier and I am utterly grateful. I have to say that I ate so much that day, it really surprised me. I noticed no side effects. The second day I lay around a bit. Saturday, I took my granddaughter to a park event which required me to walk a lot in the heat, but I still seemed ok. Sunday, all I wanted to do was lay in bed, still, went to church, came home and then lay in bed, a lot of the day. I had pains in my right foot. When I went to bed, the pain in my legs, kept me up most of the night. At this point, I don't know if the walking caused the pain or it was a side effect.
It has really helped to read everyone posts. I'm a little afraid of the depression. I feel ok and then suddenly it hits me and the bottom wants to fall out. Has anyone here ever heard of a person who hasn't lost their hair through chemo? I think it may have just have been a story my nurse told me, I am still hoping. Well, I felt frustrated this morning and cut half my long hair off. I guess I'd better be realistic and order a wig. God bless us all.
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Sweet rain- so glad things went smoothly! My MO flat out told me it'll fall out- but I'm sure it's whatever drug you're taking. I don't have a port either- so you're not alone there...fingers crossed because I haven't had surgery yet, they'll be able to jump back and forth on both arms.
I think the SE's are helping me get over the hair- when you feel crappy not caring about hair (for now).
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