August 2010...anyone starting chemo besides me?!
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Hi Lisbeth--I am starting chemo on Friday aswell and last night was at a concert (probably the last one that I will go to for a while) and when I got home--had stuffy nose etc--I thought---"great, I'm getting sick" but it seems to have cleared today. My Doctor mentioned to be careful over the next little while and although not to become a hermit, to make sure that I limit my exposure to sickness etc. We will get through this, Take care, Rachel
p.s. I have been to Denmark on business trips for work (I work for Coloplast in Canada) and it is beautiful there
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Hi Lisbeth--I am starting chemo on Friday aswell and last night was at a concert (probably the last one that I will go to for a while) and when I got home--had stuffy nose etc--I thought---"great, I'm getting sick" but it seems to have cleared today. My Doctor mentioned to be careful over the next little while and although not to become a hermit, to make sure that I limit my exposure to sickness etc. We will get through this, Take care, Rachel
p.s. I have been to Denmark on business trips for work (I work for Coloplast in Canada) and it is beautiful there
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Wherria: Stress can also make you forgetful; keep that in mind. We are ALL under just a little stress right now !
Lisbeth: Welcome. There is a forum somewhere that has a list of the acronyms and what they mean. It was helpful for me. Just do a search for acronyms and it should bring it up.
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Wherria-
I totally understand. If chemo itself does not remove our waste, concerns over chemo brain fast will! It is valid, it is a condition and it is not something you are conjuring up. The good news, if you do have it, it will get better over time and with distance from the last chemo tx. I understand your concerns and, I promise you, I am with you. I process very quickly and have had a higher than average IQ. It is a bit of a concern. I understand how you feel. One thing that docs have recommended is learn a new language and do memory exercises if you feel this way. I think I am going to get Mandarin Rosetta Stone! I studied Mandarin Chinese some years ago and perhaps I will pick that up again now.
Omaz: Yes, 4WD!!!!!
Zenith: Your husband is right about the jackal and the lion...please, please be the lion!!!!!!!!
Sohard, Huntreiter, Gin2ca, AliceJean: how are you all these days?
Post your experiences. I hope everyone is doing as well as can be expected today-
Liz
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wherria - sounds like you're doing a little better, just by your posts! When my kids have gotten really severly chapped lips, we've fallen back on "Lansinoh". It's a product (pure lanolin) for breast feeding mothers. I used it all the time when nursing. But it's VERY thick - EXTREMELY, like glue, and then it soften and melts. But it will really coat your lips heavily. I am no longer nursing (OBVIOUSLY!
but I still keep a tube handy for lip emergencies in the winter. You can get it at walmart in the baby section.No, I'm not really "ready" to start Monday - I'm scared. I'm trying not to think about it - it comes on me all at once and I get knots in my stomach. The high I was on yesterday for having no mets is wearing off and I'm angry at myself for allowing it to wear off. I should be thankful - happy - grateful and I am! But the waters settle again and reality sets in.....
An oncology nurse friend of mine wrote me this morning (she's JUST finishing up her treatment for really bad BC - and is cancer free!) and she offered to come over and give me my neulasta shots! she said depending on insurance, the doctor can send it home with you?? Nobody said anything about it to me! I'm going to have to ask about it - it would save me a trip back there each treatment to have to get the shot.
So yes, still navigating all of this. I'm getting overwhelmed financially too. We've lost part of our income with me and cancer and my husband is long long long overdue for a raise at work and they keep putting it off. So it's just been a rough day - car needed new brakes; bills roll in....yes, life keeps on going on and problems keep coming and don't stop because we have cancer.
Anyway, just taking in as much as I can on this forum to hopefully help me when I join the party Monday!
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I am nervous about Monday too. I have a lot of swelling in my armpit (going to see Dr today) and still have to have my port put in tomorrow. Feeling like all this is so much for my poor body to handle!
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Hello Ladies,
Well, I felt MUCH better today. Worked 9 hrs, I work from home so I did lie down for 2 little 15 mins naps. Helped a little.
Chemo brain--I was so distracted today. It took me like 6 hrs to do one report that normally takes 3 hrs but, I got it done. I would start something and forget what I was doing. At one point I realized I started looking at an IKEA catalog for 15 mins the darn thing has been sitting here on my desk for a week and I finally just had to look at it when I should be working?
Wherria- I work for an airline so I fly for free I can clean for you anytime! After I spent hours doing what normally takes 30 mins yesterday. My sink is full of dishes again.
I'm going to the oncologist for a follow-up tomorrow and I have to talk to him about these steriods and not sleeping. I have never had a problem falling asleep and for the last few days I doing good to get 5 hrs a night! Have any of you had these issues and what did you do?
To all those starting this week Good luck! It wasn't nearly as bad as I thought it would be. It was not pleasant and I'm sure not looking forward to 2 weeks from now. I know its scary not knowing so after you get through the first one it will be easier as you will know what to expect.
Calamtykel-I asked about giving the Neulasta shot at home and my oncologist wouldn't let me. I don't know why its an easy shot to do. It worked out that I had to bring a pump home with me and "chemo at home" for 24 hrs anyway. So, I have to go back in after every tx to give the pump back and get the shot. I hope yours lets you just take it at home as it would sure be easier on you. I'm sure your nurse friend can show you how to do it. Practice on an Orange first.
Take care y'all---Dishes await!
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I'm curious ... did a ny of you get a 2nd Opinion on the course of treatment you were given? My onc says he welcomes a 2nd opinion, but I trust him and it seems like a lot of trouble.
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Few helpful hits.
during the first few days after each chemo cycle and while on steroids (decadron). I took a ativan at night. It helps you sleep as drowsiness is one of the side effects. Dissolve under your tongue for faster results. This is one of the anti nausea drugs too, but has duel purposes.
Water - I drank at least 8 cups of liquid each day, all thru chemo. So, that was 18 weeks. I alternated between water, skim milk and gaterade diluted with water so it wasn't so sweet.
Make sure to get the Emla cream for the port, and put on at least 1 hour before the poke. I never felt the poke, and still don't. That cream really works!
Neulasta shot - gave this to myself. It is a very small needle, and hardly hurt. I was not about to drive 35 minutes to get it, takes all of 15 - 20 seconds.
And just a friendly reminder, if you had lymph nodes removed, don't let them measure blood pressure on that arm. If nodes gone from both sides, then request a thigh measure. It is what I do!
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Hi all...
The HEAT WIPE ME OUT...
TODAY IS DAY 8...
DREADING AUGUST 23...
STILL FATIGUE, CAN FEEL MYSELF GETTING BACK TO NORMAL...ZOLODEX SE ARE KICKING IN TOO...BOUGHT SOME IMMODIUM TODAY...
GOING TO BED...
YOU ALL ARE IN MY THOUGHTS...HI ALL THAT ARE NEW TO GROUP... I NEED YOUR SUPPORT...I AM OFFERING MINE AS WELL...
SORRY BOUT CAPS...EXHAUSTED..
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Hi L,
Just go the word from the doc, will have to have chemo too, not looking forward to the unknown!
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I have 1 more wk. of some normality to life before chemo and herc. I have a big wkend planned with my b/f and her family. Boating, waterskiing, tubing and having a few cold ones. Did not get a good family vacation since being diagnosied in June, between surgery and all of the other appointments. I have comfort in hearing everyones experience and it doesn't sound all bad. I will be getting TCH. I had an MRI yesterday because of bad headaches to see if there were any mets. and no word from the onc. today, I am hoping no news is goos news. Wondering if everyone in the Aug. group has had hairloss. I have pretty much come to terms that this will probably happen, I have ordered a hair prostesis ( lol love this fancy name for a wig) and a few scarfs and hats. Have a nice evening everyone.
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I have 1 more wk. of some normality to life before chemo and herc. I have a big wkend planned with my b/f and her family. Boating, waterskiing, tubing and having a few cold ones. Did not get a good family vacation since being diagnosied in June, between surgery and all of the other appointments. I have comfort in hearing everyones experience and it doesn't sound all bad. I will be getting TCH. I had an MRI yesterday because of bad headaches to see if there were any mets. and no word from the onc. today, I am hoping no news is goos news. Wondering if everyone in the Aug. group has had hairloss. I have pretty much come to terms that this will probably happen, I have ordered a hair prostesis ( lol love this fancy name for a wig) and a few scarfs and hats. Have a nice evening everyone. 0
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I have 1 more wk. of some normality to life before chemo and herc. I have a big wkend planned with my b/f and her family. Boating, waterskiing, tubing and having a few cold ones. Did not get a good family vacation since being diagnosied in June, between surgery and all of the other appointments. I have comfort in hearing everyones experience and it doesn't sound all bad. I will be getting TCH. I had an MRI yesterday because of bad headaches to see if there were any mets. and no word from the onc. today, I am hoping no news is goos news. Wondering if everyone in the Aug. group has had hairloss. I have pretty much come to terms that this will probably happen, I have ordered a hair prostesis ( lol love this fancy name for a wig) and a few scarfs and hats. Have a nice evening everyone. 0
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Yeah, I know that "countdown of normal days" IowaSue. It's a strange feeling to be letting go of normalcy on a set day. I have a big weekend planned too, with the chemo party starting on Monday. I'm just overwhelmed today. DH came home and was crapped on all day at work. Every other person in his office's had their review and a promotion except for him and now it's four months overdue. They keep telling him he'll be getting it "soon" and that it's "good" but today his boss went away for two weeks without so much as a word. He hasn't had a raise in over two years and we really need the $. And now they're messing with his vacation time. I guess they know we're "in debt" to them because of the allowances they've made for him with coming to last minute appointments with me and the surgery and such and jobs are pretty much impossible to get nowadays. He came home and couldn't even eat dinner. It just stinks when life doesn't stop for cancer. I mean, this should be "all" we have to deal with - not all the regular life crap too.
Well, hoping somehow tomorrow might be better. Getting scared about Monday. Somehow it doesn't seem real or something....with the surgery, I wanted it: wanted it done. But I knew I would be in control once I was done with it and my body could heal. With this, it's a different feeling somehow.
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Ladybama: I got two opinions. I went to a very large cancer center far away (too far to travel for the treatments IMO - ) and then went to a more local one. They basically both said the same thing from what I understand. I thought the first one said my treatment would be longer but in retrospect now I'm not sure even though I wrote it down. I asked the second onc that I saw and she said that what I'm getting is totally standard for the grade and all that that I have, and that she has no reservations with it and success rates from statistics. So I feel as if I trust her, BUT I'm very glad I got the other opinion also. Two sets of eyes on my path report to go thru it with me made me feel better.
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Welcome to the midweek update! We have quite a crew going here and I am very happy for this!
New members...welcome, welcome to our dubious club!!!!
Ckptry
Gingerbrew
CindyRN
Goejsen----from across the pond!
Libraylil
Mommichelle
Hope777
Welcome all. I hope you find strength, a place of belonging around a place where you know you can come in good times and bad
When you feel alone or like no one else understands, you now definitely have a place to come! Glad to have you all with us.&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&
Changes to existing members who now have start dates to get on the path to getting healthier:
Zenith Aug 12
RACHEL5738 August 13
DebJ August 16th
Calmtykel Aug 19
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Our thread is growing pretty steadily and I want to thank you all for participating and supporting each other so much. Just please remember with this growth comes the potential for me to make a mistake or forget to list somebody who is starting etc... so please, please PM me if there has been an oversight.
I wish you all sweet dreams this evening! May tomorrow bring you some fun-
YOUR FEARLESS LEADER!
aka Liz
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Calmtykel: I got 2 opinions. One wanted me to go longer than the other. I think you really have to have faith in the "facility" and comfort with the doctor. When the 2nd one told me I would have to have more than the first I was not sure I had a difference of opinion. Alas I am sorry to hear about your husband and his job. That really plain and simple sucks. We should not have to deal with so much during a cancer battle, I agree.
Liz
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Best of luck to....
Our girls that have yet to start their path to healthier lives, this week, as follows:
LISAATTHESHORE: August 12
LIBRAYLIL: August 12
ZENITH: August 12
RACHEL5738: August 13
ALICEJEAN: August 13
JSW19: August 13
GOEJSEN: August 13
Please take time out to send good wishes and vibes to these crew members, think of them and remember this is not the easiest path but our only path. To this end, we must support each other.
Thank you all and have a good night-
Liz
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I went and had my hair cut off today. It looks really cute and is about 1" long all over. I felt rather Gina Lolabrigida. The stylist said he felt it was starting to fall. I also got a wig styled and it looks close to normal. It is synthetic, I am going to get a human hair wig, I get a good referral to a supplier.and the cost is closer to 2 or 3 hundred. I don't think I would like having nothing on my head.
I have my second round of chemo on Monday the 16th. First however I will be having anew grandchild on Friday morning. Quite a few things going on here.
I had trouble sleeping days two three and four. I was given a steroid to take on the first three days. I don't know if it relates to that or not. I also had muscle pain in my shoulders, they hurt. I had back pain and some weird sort of leg issues. I was really uncomfortable and really tired too.
I slept most of day four and spent some time crying on days two three and four. Just really morose and down. I was having thoughts like, "Is this how it is then? I will just feel worse and worse until I die." I had good nausea control and I dispise throwing up so that was good. I have my next round this monday and I am wishing there was a way out of it. I'll do it but sure don't want to. I know we are fortunate to have treatment available and I am grateful. The emotional effects were scary. I really felt hopeless for a while.Chemo brain also scares me.
Round 2 8-16-10
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aw Ginger - I'm sorry for your emotions. I think that chemo for sure when it knocks our whole system knocks our emotions way off kilter too. I'm expecting that - although not 'preparing" for it....I don't think you can. You're not going to feel worse and worse and then die - you're going to get better and better! And you're going to take that new grandbaby to the zoo, park, see his/her first school play, etc.
Hang in there!
For me, reality's settling in and I didn't sleep last night. I'm scared of the chemo. I'm scared of the hair thing and I may just get it shaved totally on Saturday even though I hadn't planned on it. I went through a GIANT drawer of scarves that I've been hoarding for years (had no idea why except that I liked them - now I know!) Most are vintage 50's and 60's - some wild colors, etc. My husband was laughing as he was getting ready for work and we were talking and i kept pulling more and more out of drawers to get them all together. I told him this is the tip of the iceberg - I have another big bag in the basement. ;D
I have really long, thick blonde/red hair and this is gonna be hard. My hair's been the only feature of mine that I've ever been happy with........ugh! But i'm trying not to let it define me, the part of it that are not "pain".....so on we go.......
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Best wishes to Lisaattheshore, Librarylil, and Zenith as they begin their chemo today. Extra-special wishes to my start date buddies for tomorrow - Rachel5738, AliceJean, and Goejsen! Here's hoping for a side-effect free weekend for all of us!
Regarding a second opinion - I sort of got one. I went to a large cancer center 2 hours away for my surgery and I had a consult with a medical oncologist there but asked him for a referral to a med onc in my hometown because I didn't want to travel that far for chemo. When I went to my local med onc, he said let's just go with the regimen (TCH) recommended by the first doctor. So that is why I say it was sort of a second opinion, since the second doctor basically just said let's do what the first doctor said. Since then from being on these forums I have realized that TCH is pretty much the standard for HER2+ women like me, so that makes more sense that my second doctor was so quick to agree with the first one's recommendation.
In other news, I went to a Look Good Feel Better class yesterday. It was a lot of fun! It is run by the American Cancer Society so any ladies in the US definitely check it out. The website is http://www.lookgoodfeelbetter.org and you can look up to see when they are having one in your hometown. There were 4 other ladies there, 3 also had breast cancer and one had ovarian cancer. It was nice to talk with them about treatment because we were all at different stages so the ones who had already started their chemo helped to reassure me that it will not be terrible. The session is free and they give you a gift bag with tons of free makeup, cleansers, and lotions and they do a tutorial on how to put on the makeup, especially stuff like drawing on eyebrows once you lose those. I highly recommend it to everyone.
I have been having trouble falling asleep these last couple of weeks (unusual for me) and it is only getting worse. My doctor has not prescribed anything for me to take at home - no anti-nausea meds, steroids, or anything else but I'm thinking I might ask about some ativan when I go in on Friday. Just something to take the edge off so I can sleep better!
This time tomorrow I will be sitting in the infusion chair at my onc's office... fingers crossed that everything will go well!
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Hi jsw19---thanks for the best wishes and good luck to you tomorrow aswell. I am nervous and anxious but excited to get this whole thing started so I can hopefully be on the road to recovery. I am debating about my hair--I have shoulder length--very thick hair--and don't know if to shave it off first or let it start dropping.Other than that...big deep breathe and just get this thing done
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Rachel, I am feeling exactly the same way! Very nervous (already starting to feel nauseated from the butterflies in my stomach!) but also excited to get this going! I also have thick hair and this week I got it cut from shoulder length to chin length. I am hoping that since it is thick I won't lose all of it but I know I probably will. But I want to give it a chance and see what happens when it starts to drop. I got it cut to chin length so that I won't be leaving such long hairs everywhere when it does start to go!
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Good morning girls!
Hair- yesterday in the shower I realized my hair is down to my butt! Most unfortunately, I watched my father go through chemo for an aggressive lung tumor and I remember having dinner with him one night and watching hair fall off of his head into his dinner plate. It is a vision that I will never forget so I, too, shall cut it off to a short buzz and donate the fur to children! You don't really think about maintaining/getting your hair cut in the months coming up to chemo so I have not cut it so some children will benefit from this.
Rachel and JSW: my onc said yesterday you pretty much have until between the first and second treatments to make a decision when to cut but after that it is pretty much, in most cases, going to be gone as the chemo gets to work. Don't forget the lint roller and electric tape for the residual hair!
Good day to all-Liz
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Another new member: Please welcome Caroljl! She is joining us "in progress" as she started on August 2nd. She PM'd me so I have added her to our group.
So come on down, Caroljl, you are the next contestant on chemo is great when it is over!
Your FEARLESS Leader!
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jws I like the attitude of "excited" to get it going - it's true, because the sooner we start the sooner we're out.
I looked on the calendar and counted my chemo treatments and just to see an actual end date number (which I still need to confirm on Monday) somehow made it seem like "Okay, that's it - that's the goal date. Then God willing, it's done."Went running this morning since it looks like the rain is coming and it released a lot of emotions so I'm feeling clearer headed about all our financia problems, DH's work issues and moving ahead with this. I feel in limbo right now - have to prepare for my 12 year old's birthday party tomorrow night and haven't done anything yet....stuff like that. I'm glad it will be a busy weekend at least. But my kiddos will be gone from Saturday through Monday since we're going to an antique show in the city on Sunday to meet up with old friends we used to do the show with and chemo starts so early Monday morning........
I'm very concerned about our prescription drug plan - it's really crummy..
And I'm afraid that it's not going to cover the meds I need for the side effects. I'm scared about this- we have no extra money right now at all. Hoping to talk to the nurses at the cancer center - maybe somebody knows. 0 -
Thank you for adding me to your group of brave women, I just found out that I now have shingles, !AWWWH!!
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Hi all...
Anyone else had a zolodex shot? Or Lupron....
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Calamtykel - the 4 anti-nausea drugs they sent me home with were all generic. My co-pay was $5, but I know that places like Wal-mart will fill some generic medications for $5 without insurance. Wait to see what they give you.
Sohard - How are you doing with the zolodex? Are you having se's?
Best wishes to everyone journeying into the fray today and tomorrow. We are all there with you!
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