March 2011 chemo-lounge
Comments
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mdg - sorry to hear about the bone pain, I know what you mean by the too many drugs thing, but if you tell them maybe they can find comething that works and does not upset your stomach.
Maybe take something tonight to help sleep - this is so much harder to cope with when you are exhausted.
We are all thinking of you.0 -
Hi all. It's been a week since my first treatment, and I finally feel pretty normal.
Regarding bone pain, the oncology nurse told me to take Cairiten the day before and up to 7 days after the Neulasta shot, so I did. I had some bone pain, but it was not unbearable, and didn't have to take any pain meds. Hope this helps.
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Just wanted to let you know that I feel like a new woman this morning! THe bone pain went away...thank God! I actually slept better than I had in days and woke up feeling "rested" which is a first in several nights. I am going to the gym and running errands. I get my first post chemo blood draw today. Will let you know what they say.
I hope all my gals at the bar are doing well! Oh how I wish we could all meet up at a real tiki bar somewhere warm and tropical for a real cocktail when this is done........you know somewhere in the caribbean or something......a girl can dream, right??
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Imagine how good that fruity umbrella drink (with rum) will taste as the wind blows thru our newly grown out hair and the waves lap at our toenails freshly painted...enjoy your day of feeling good! This time next year this will all be over.
FINALLY going to get the rest of my path report today from BS#2. BS#1 did not want to release the results to her. BS#1 has called me here at home personally 4 times since last Thursday. Kind of freaked about it-I know it is bad but maybe it is really bad? Answers awaiting today. Tests scheduled every day next week as well as port install. I just want to get this started! Knee surgery tomorrow-that gives me 4 days to get ready to hop up on the scan tables next week.
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mdg: I had that same flu-like deep bone ache for 48 hours after my Neulasta. My chemo nurse, who's been doing nothing else for 25 years, had told me to expect the pain to start 24-48 hours after the shot and that it would last about that long. In my case, she was right, I had the shot around 3pm Friday and by Saturday evening was achy. Sunday was nasty, but Monday I was better. I never did take any pain meds - I have the Claritin and some oxycodone left from surgery that my onc said I could take - but since it was a rainy, stay-inside weekend, I just laid around and tried to get through. Like you, I'm trying to keep the meds to a minimum if possible.
I've learned first-hand the meds can cause other issues, like constipation, which is something I'd hoped to avoid. Wrong. Apparently the Zofran (ondansetron) drip in the chemo pre-meds did a number on my belly and I had some trouble for the last two days. Sorry if TMI, but possibly worth knowing for someone else.
After the fact, I've been told that if I have nausea (which I did over the weekend) to take the Ativan for it instead, because more Zofran will perpetuate the constipation. Word to the wise - to save your butt.
Question to all: are there weird mouth changes 5+ days out from infusion?
My mouth started feeling odd last night - no sores or thrush, just tingly and the skin inside is wrinkly feeling. It felt hot, I had a popsicle, which helped. Also, now not only can't I taste things as has been the case since Friday, everything tastes awful. So far today I had a banana, which is all I can do. Worried about this mouth feeling being the precursor to sores/problems. I keep looking in the mirror, examining my tongue - starting to feel silly.
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Michelle67: I can tell you that the ativan gave me constipation! I figured it out.....I took Ativan the day of chemo and then they gave me some in the IV that day. Then at night I took Ativan so I would fall asleep. I took it on night of chemo and a few nights after. The contstipation was awful. As soon as I stopped the ativan, no constipation. I am back to taking xanax at night to sleep and poop is back to normal. I will only do ativan on the day of chemo along with Senakot stool softner and laxitive. I am staying away from the Ativan personally. I have been fine since I stopped taking it. I was lucky and did not have nausea this round so I didn't need the zofran either.
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Thanks for the updates on how you are doing ladies. I am scheduled to get my first treatment tomorrow afternoon so I'm thankful to be able to read about your experiences.
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Seem like our experiences are pretty common. Constipation for a few days, bone pain for a few days, etc. Next time I will take Senecot the evening of my treatment. I also have been having some intestinal cramping. All of these symptoms are gradually dissipating.
Michelle, everything tasted really bland to me. I found myself eating about 6 small snacks a day rather than meals, craving anything salty or spicy just so I could taste it. My mouth is also doing funny things. No real sores, it's just kind of like the inside of my cheeks are swollen or something.
Having my first post chemo blood check later today.
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4 (or is it 5?) days out from first chemo. The first two days were shockingly easy...not terribly hungry but not pukey either. Went back to work on Monday and of course then the fatigue and really hard time contemplating food hit. I felt awful the last two nights. And had to come home from work early yesterday. Must be the steroids finally leaving my body...kinda left me without the will to do much of anything...much less work.
My mom had come up to take care of me for a few days and we had bought all this really healthy, good food and made recipes to freeze from the Cancer Fighting Kitchen Cookbook (which is totally awesome and has a huge section on good foods to fight cancer as well as how to "fix" food when your taste buds go rogue). But of course Monday and Tuesday nights, the only thing I could even contemplate eating for some reason was crap. Ordered a diner hamburger Monday and grilled cheese and fries last night. So much for the insanely expensive cache of organic foods I stocked the fridge with.
Still randomly peeing orange (AC) and sometimes still get that horrible taste in my mouth. I chewed like 3 packs of gum yesterday at work. Think my lesson learned is even more water before and after and maybe Senacot to help get the chemicals through me faster. Having my port "installed" same day as chemo probably didn't help...I couldn't drink anything that whole morning and made my neck sore, so swallowing was a bit labored.
And maybe I'll just start working from home the days I'm coming off the steroids if I don't have big meetings or something. I'd rather spend whatever energy I have actually working, than going through the motions of getting into the office just so people can see my face. The subway is def not fun when you're crashing a bit (there should not only be a designated pregnancy seat on each car...there should be a chemo seat).
But starting to feel more like myself again.0 -
Oh and jenn_h, sounds as if you're doing an amazing job keeping your students involved in what's happening with you, and taking the "scary" bit out. I'm trying to do the same with the people I work with, but sometimes adults are a little less "mature" than kids are!
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Good morning ladies well 8 days and counting till my first chemo round. Sure is ehlping some to know what to expect from reading your posts. Have any of you started to loose your hair yet or did you shave it off already?
MDG yes that sounds glorious if we could all meet when this is over who knows maybe we can lets get through this year together first lol.
Lilylady good luck am sure hoping your results are the best you can hope for.
Michelle what is a neulasta shot? I havent heard of that yet I imagine I will be getting that too??
Colodisney good luck tomorrow I will be thinking of you just let what ever emotions you need to come out come out I really dont see the purpose in trying to hide them. I certainly dont feel guilty when I have happy moments and I try not to put myself down when I fall apart. Let us know how it went when your able
Well should get back to work
have a great day ladies
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Penny, that is so funny about your husband. I am glad that mine goes with me, but he never stops looking at his cell phone the entire time we are at any Dr. Well, slight exaggeration but still. I told him I'm going to bring a friend with me to chemo + him so that I have someone to entertain me. He might have been a tad offended...I feel guilty that I said anything to him, but I can't read or concentrate because you just get started and then they call your name or come in the room or whatever. I'm so fortunate that he works for himself because he can go to all my doc appts, surgery, chemo, etc and he can still keep his business going through phone calls and emails. But, he doesn't entertain me. Probably just he will go to the first one, then I'll know more about taking a friend. I'd like my BFF to go, but as some of you have said, she's otherwise occupied now when I need her. She is on spring break with her college aged son, so back next week in time for chemo - and wig shoppping!
I have heard to go wig shopping before it stops falling out, advice from those of you ahead of me? What do you think of the pic of Lady Gaga on Vogue (Elle, Glamour, not sure?) Saw it at the grocery yesterday, short bob died pink! I'd love to have a Marilyn Monroe or Raqeul Welch or other fun, inexpensive wig. My step daughter, who is 15, is going to go wig shopping with me too. I love accessories, including hats, so I plan to use this as an opportunity to get some new accessories. I have a hair appointment about 10 days from first chemo and I'm going to go with a short pixie cut, and die it a fun color, maybe red.
Kymn, the countdown begins...You are not getting a port, correct? I get mine Monday and bone scan tomorrow.
Also, ladies, what is the Neulasta for? I know I can look it up in my cancer books, but you all probably can tell me. Does everyone get that?
Thanks and have a good one, I'm off to go to my office for a bit. Ugh...
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Ladies, I love the chemo lounge name. I will have the first TC treatment TOMORROW March 10th and like one of you said, I REALLY don't want to do this but.......my favorite cocktail is a Frozen Margarita. Anyway, I just took 1 Decadron pill and must take another one tonight, as pre-med for treatment. I am scared, anxious, and everything else as I get ready for tomorrow. Just praying all goes well. I will be taking 4 rounds, 3 weeks apart. So I am trying to focus on the fact that I will be in treatments just 9 weeks, and I can count down the weeks to make it go faster. I am also dealing with breast recons/TE's...I am scheduled to get the second fill next week, as soon as I recover from treatment.
I am SO GLAD to have this March Chemo Lounge to come to.0 -
AnaM...
I just had my first chemo tx on Monday - I'm on Taxotere & Cytoxan, 1 tx every 3 weeks. Now just 3 more to go. This is only my 3rd day out, but just to let you know, so far, so good. I've been eating just fine....I took the pain meds (Decadron/Zofran) exactly as they said to stay ahead of the nausea and haven't had one tiny bit of nausea at all. Thank God. Had my first of 3 Neupogen injections yesterday. It's similar to Neulasta but the chemo nurse told me that with Neulasta they give you a really hefty dose (which is why it can trigger so much more bone pain and achyness than Neupogen, although Neuopgen will make you feel achy also). With Neupogen, they give it to you 3 days in a row with an injection into your tummy fat which you DON"T feel at all...and it goes into your bone marrow more slowly -- they just feel that's a better way. All docs are different, but the results are all the same, so it doesn't matter.
I'm waiting for the loss of appetite, fatigue, neuropathy to visit any day now, and next week am getting my head shaved in anticipation of my new look...not looking forward to it, but would rather take it into my own hands. My family (daughter/son-in-law and 3 gorgeous grandchildren) are going to do the best we can to inject some humor into it since it'll be my one and only time shaving my head.....
I read everything on here that I could, wrote copious notes (like taking Smooth Moves organic tea each night before bedtime to help w/constipation because I'm NOT a woman who likes to take any Western medicine) and it was all so helpful. Being prepared as much as possible definitely takes some of the apprehension and anxiety out about what we're facing. And I have an extensive legal background so I'm one of those people who likes to do my reasearch ahead of time anyway!!!!
As every single woman on this site says, and as every single onc dr will tell you, everyone's reactions to all of the side effects are different. Some women go through with minimal effects, others have a more difficult time. It will be challenging no matter what. But don't assume you're going to get hit by a mack truck with all of them because you might be surprised......it's mind over matter and keeping a positive attitude of knowing YOU CAN DO IT will help you more than ever....
Just take it one day at a time, and you'll get through it. I know I'm only on day 3 so I have LOTS ahead of me, but I've talked with several close friends who've been through it and they all said the same thing -- you'll have some bumpy days, you'll have some really good days, but it's all completely do-able and don't let yourself think any other way.
A few short challenging weeks out of our whole lives to bring restored health and goodness back into our body -- it's worth whatever we have to go through. And thank God a million times that we are living in an age where everything medically is as up to speed and current as it can possibly be. I can only imagine what this would have been like for women 20-30 years ago.....ugh....
Keep the faith, don't be scared or worried, just be prepared w/whatever you think you'll need and take a deep breath -- we will ALL survive this and look back on it one day realizing we're changed women, much stronger woman, much more grateful women and much more evolved as a human being for the experience.
All the best to you and good luck~
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Hello Chemo Lounge gals:
This thread is particullarly near and dear to me for two reasons:
1. I have stage 3 IDC 6/18 nodes dbl mastectomy on 2/17/11 and start treatment Friday 3/10/11. I may be the biggest lush in the lounge in that I will have 4 doses of AC, 12 doses of Taxol + Herceptin followed by 13 more doses of Herceptin. Chemical infusions for 52 weeks with breaks throughout. Then the swap from tissue expanders to implants and taxol for 5 years and some other drug for 5 more years that I cant recall. I am 42 and pre-menopausal.
2. I love food and drink and people who are funny - all of which I think I found here. I do a radio show on food and alcohol so talking about food I cant taste or dont want to eat for the next year should be interesting. For those looking for nutritional guidance try the book Superfoods and Beating Cancer with Nutrition. I have cut out hormones in meat, dairy and try to go organic when possible with minimal white flour and amd even trying to cut down on grains while amping up veg.
I start chemo on Friday and am wig shopping tommorow. I have a few scarves and may just brave it bald but we will see what feels right. I am adding massage and accupuncture to my treatments but they are out of pocket costs so we will see how long I can keep them up. I am self employed and have been out of work for 3 weeks. I did great with the surgery and then had my first tissue expansion and a port a cath surgery which has knocked me around a bit though I am coming out the other side.
Anyone care to share yoga resources? Id like to start but I am wondering if there is special breast cancer yoga?
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Shansen~~
Quick message on the yoga for breast cancer. You might want to check into logal yoga studios...many here in the SF/Bay area offer Restorative Warrior yoga classes for women going through chemo and still healing from their surgeries. The classes are designed to work the body with yoga, but also infused with many healing postures that help with the chemo side effects and help to heal the part of the body where surgery occurred. I found one a few short blocks from my home, and the environment is unbelievably supportive. So maybe see if there are some classes like these. I've been doing yoga for many, many years and these types of classes are always available - - you just have to look.
Also acupuncture is a wonderful complementary therapy to do w/chemo....also aids with the digestion, decreases the anxiety, stimulates the circulation and is very very healing. I also belong to a meditation group that meets weekly. Another very healing and peaceful environment. I think all of these are perfect to aid us in getting through the physical and chemical challenges of BC.
The best to you -- if you can find some of these classes to take, I promise you you'll feel so much better, in all respects.
Good luck, take good care of your body, and all the very best~
Aloha~
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Shansen,
You made me laugh, calling yourself the biggest lush at the lounge, that is a term I have not heard since college. With my treatment, TAC every 3 weeks X 6, I do not drink often, but when I do, I am a sloppy drunk!! Best of luck to you.
BTW, after my 3rd chemo, I am actually craving and enjoying food, cooking more at home and trying some new healthy recipes.
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-Shansen
I also did accupuncture pre chemo (day before chemo) and I think it helped. If anything it helped with the stress I was feeling with the lead-up. I had a friend that swore by it and massage (or any kind of touch therapy) as she went through her chemo. Haven't done the massage yet as I'm still kinda sore from mastectomy/port insertion. The woman that I go to for PT for my mastectomy does do quite a bit of hard core massage at the site and I think it's helped my healing.
I also see a complementary doctor outside my onc (he's strictly into hard-core cancer drugs) who has given me all sorts of things to take to help with side effects. I think when you're hitting the chemicals for a long period of time (I've also got to do the herceptin for a year), it might help to get you through to the other side a bit less bumped around. The drug for 5 years is probably Tamoxifin. I can't even wrap my head around a drug I'm going to have to take for 5 years yet. I'll start worrying about that when I have new hair coming in and new boobs to look forward to!
Have fun with the wig shopping...the guy who set me up kept calling all the wigs "girls" and asked me what I was going to name "my girl." Jury is still out on that one.
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AnaM: welcome to the lounge....sorry you HAD to come, but glad you found us here at the bar! Pull up a barstool and order a cocktail...:) I am on the same chemo as you but mine is called "pinot grigio". I had my first treatment last week - one week ago today. I am surviving. I have vowed to workout M-F through chemo (except infusion days) and so far I a have. I only have 8 more weeks to go! I hope it holds like it is now!
Shansen: Glad you found our little lounge. Every lounge needs a lush...(ha ha!) so glad you could join us. I am sorry you are in our little club though.... hugs! As far as yoga - my local cancer center offers a class for cancer patients. I was going to start it but I have just been doing workouts at the gym for now. I have TE and had a BLMX so didn't want to do anything too new until I was all healed up. I also got a port in my arm and am not sure what restrictions that brings...You do a show on food and drinks. LOVE IT! I am a foodie...I am Italian. I have cut out all hormones, gone organic, cut out beef, doing all whole grain, soy free, no refined sugar and the only oils I eat are EVOO and Canola. It is HARD. I am having a blast cooking and baking healthy food for me and my family so we can all eat this way. I am thinking about starting a cooking blog since I am doing my own recipes....will keep you posted. Right now I am trying to figure out the most economical way to do organic without breaking the bank! $$$$
Someone asked about neulasta....it's to stimulate blood cells. It was not fun for me yesterday - bone pain side effects. But today - I feel much better...like a new woman. I have not gone shopping for a wig because I am doing the cold caps and hope to still have hair with that treatment......it has only been 1 week post my first chemo and I know people don't usually lose their hair until after 14 days after the first chemo. I am nervously waiting.....I will give a hair report next week. Cross your fingers! Anyone else doing cold caps, or just me? I guess I will be hanging out in the freezer in the bar.....brrrr! But then again, cocktails do warm you up, right??
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Hi Stephanie/aka Shansen,
I'm your partner in lushdom here, with a very similar diagnosis! I was going to do the same regimen you are doing, but ended up joining a clinical trial, so instead of taxol/herceptin, I'll be getting TDM1, which is herceptin and another taxol-like chemo drug combined. But timewise, it is similar: 4 rounds of AC two weeks apart, then TDM1 for a full year. 6 weeks of rads will come somewhere in the middle of the TDM1. Then on to hormone therapy for five years... whew!
Good luck Friday. I start at 7:15 tomorrow morning!
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You guys are a blast! My best girlfriend used to call me every Fri. during my infusion and ask if she could come and put some Liquid Wisdom in my IV. Its a white wine from upstate NY that we both LOOOVE! We always say we have to look for a nursing home that has a bar..LOL
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Love all the ideas on healthy foods - all I can manage at the moment is white rice or mashed potato, think the Taxanes shred your guts. And I used to love my food and wine. I have worked out it will now take around 20 years for me to empty my wine rack at the 2 -3 drinks a week they say I am allowed- big collection of Aussie wines - Maybe I should just donate them to our after chemo party.
I went wig shopping with my sister and daughter - we tried on all the REALLY BAD wigs and took photos of ourselves - had a ball.
People's reactions to knowing crack me up - from the "Back away from the chemo lady" one to the very polite "Well jolly good luck with that" - I like my mum's reaction best - she is the most tactless women in the world - asked me if I had seen the movie The Bucket List.
Keep smiling - there are alot of unexpected moments of humour and love in this whole experience.
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Bad day at the Cancer Ranch for Lilylady. After waiting 2 1/2 hrs in BS#2 waiting room and another 1/2 hr in the little room before I ever saw the doc...I was spitting nails. I couldn't afford to be snotty over it but it wasn't a good start to our relationship. This caused me to miss the first onc appt-which was right across the hall-that didn't please me either.
Not especially good news delivered. IDC triple negative, >6cm primarily embedded in the chest wall (which is why so little showed on the mammo.) Stage IIIb Grade 2
They came back with a new onc appt date-Mar 30-I really blew my stack. I had reined it in as long as I could so I went all factory girl on them and now have an appt next week. It wasn't my fault they were 3 hrs behind. Then they came back with all the little slips for all the other tests-all at a hospital an hour drive away instead of at the hospital I was standing in. BEWARE THE CRAZY WOMAN WITH BC!!
2 good parts today-I got my "PROSTHETIC HEAD DEVICE". I am going to call her TRIXIE. I think I will get her a best friend too. Other thing was I was afraid my tumour had tripled in size since last week. It has gotten so big it has my boob pointed up (which it hasn't done in a good many years). Turns out I have a massive hematoma from the biopsy last week. Because so much of the tumour is in my chest wall she lifted my breast up and plunged the neeedle in from underneath-hence the swelling from the pooled blood is propping her up.
I feel like the Guiness book world record holder for getting the worlds slowest response to BC treatment. If this keeps up I will have to join the April chemo girls.
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Lilylady, I wish I could give you a big hug. Sounds like you need that today. That day really sucked. I am so happy you became CRAZY WOMAN WITH BC.
Now, that IS the time and place to use the BC card. You go, girl!
Hugs to you,
Annie
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Hi Lilylady, sorry you had such a rough day. Its bad enough we are dealing with this but to be left waiting that long is just plain rude and insensitive.Hugs to you my girl. I too am triple neg i know its a bit overwhelming but just keep in mind that triple neg breast reacts very well to chemo. come pop on and join us on the TNBC thread lots of good advice over there. talk with you soon
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actually its called calling at TNS....sorry about the misprint
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OMG I havent even started chemo and I have chemo brain ok last try calling all TNS...there that wasnt that hard lol
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pennycookson: I told my husband "Just think how much money we will save on wine now that I can't drink it anymore...it may almost pay for all the organic food I have to now buy.". He said..."there isn't that much wine that could cover the cost of the organic food......". He's right....... Also on the wine topic...I wanted to bring an empty bottle of Pinot Grigio with me on a chemo day and rig it up in the IV holder upside down and empty and have it look like I was hooked up to it.....I then wanted to text a photo of it to my friends and say "this BC thing is all a cover...this is what I am really doing on Wednesdays". LOL! I know....yes, I am sick, very sick (emotionally).
Lilylady: I am so sorry about today. That's horrible. I call myself "cancer bitch" when I have those moments. When I get cranky and irritated I just say "cancer bitch is out right now, look out!". My closest friend thinks it is hilarious. When she is irritated with stupid stuff at work she asks "can cancer bitch call my boss?". It is always good for a laugh..... Where exactly are you in Ohio? I am in Detroit...neighbor!
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Maria, Penny, carberry, and all...
I have a favorite wine called RELAX. My husband bought me a case a month or so ago (pre-diagnosis). I call it "mama's little helper", because I enjoy a glass after work. Haven't had any in so sooo long! My husband is wine maniac-his brother has a wine cellar with over 1000 bottles; my husband has a wine fridge that holds 16 bottles. I tell him he has wine cellar envy. I love the idea of the empty bottle hanging from the chemo drip! My sister's last name is Lush. You can imagine the fun we have with that..."my sister married a Lush!" (never gets old)
Kymn...I have said for the last two weeks I have chemo brain, and I have not started either. I can't remember names, why I went into a room, or who I was calling. I can't imagine how I will be AFTER I start!
Lilylady...good for you for getting mad. No one should have to be put through something like that, especially we BC warriors!!
I am calling tomorrow to start my chemo on March 17. Have delayed long enough (pneumonia will do that). I think there are 3 others starting then too? Need to get supplies and might see if I can get in somewhere tomorrow to look at wigs. That is what is causing me nausea right now-hair loss. But we're in this together and that helps. Cheers!
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Could you clarify the drug you took again ? I can't find it claritin
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