March 2011 chemo-lounge
Comments
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Sorry to hear this Penny. Hope you are feeling better real soon. Chemo sux.
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Penny that is terrible! Don't you go worrying us gals! You better get better soon! Hugs! Please keep us up to date on your progress. I am glad your sister is there too.
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Has anyone experiencd burning on their hands after Taxol? It looks and feels as if I placed my palms on a hot stove! Other than that, day 3 after first Taxol, I feel quite good. Mild bone pain in sternum. Just can't do anything with my hands!
Sue
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Thanks for your thoughts guys - They changed my antibiotics yesterday and I think these are having some effect. My onc is away at a conference - The G.P I saw was quite cross that I had not been admitted. I had not been to him before but think I will stick to him in future.
I am due the port out in a week but i think they will have to put that back till the next cycle. I can't believe its safe to carve into the left side of my chest when the right side is all red and angry. I am so hoping this is sorted and does not delay my next chemo.-
its my daughter's 30th birthday on Saturday 11th June and my son's 25th on Sunday 12th. (Yeah - I know, sounds like my poor DH only got lucky once every 5 years in September, but not true) I really wanted that to be the week before chemo not just after.Sue - mine includes Taxotere but I have had no burning hands
I am so glad for those of you that have finished - and it sounds like those on Taxol only for the rest aren't having so many SE. This is an awfully long road but I reckon we are nearly over the first hill.
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Penny, glad to hear you are feeling a bit better.
Sue, I get cytoxan and taxol. I haven't had burning hands but have had stinging sensation a lot, both hands and feet. Needle-like stinging. I had chemo #5 yesterday and woke up with red face for the first time. Neck too, but the neck looks like a light sunburn as it follows the pattern of having a v-neck. I have recess duty from 11:30 to 11:50 and wonder if it isn't a delayed reaction to sun? I wear a moisturizer daily with SPF 15, but hadn't thought of neck. Will start doing that Monday. Probably stronger than 15! Only 6 1/2 days left of school. Can't wait. Final chemo will be June 3. Then rads to follow 2-3 weeks later.
So glad for those of you done and to those almost done. Can you believe it?! We are starting to see the light at the end of the tunnel. Or as Penny said, at least over the first hill!
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Husker: hoping a SE free week for you! I was thinking about you yesterday in the chair. Let me know how you are doing over the next few days. You are almost there!!!
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Hi all, checking in with you, hope it's a good weekend.
Re: sunscreen, I wear no less than SPF 30 daily on my face, neck, chest. In TX, I usually wear SPF 45+ if I'm outside and exposed. Be mindful of your ears, too! Learned that one the hard way after losing my hair.
Penny, I had a scare like yours this week. I had an appointment set with PS for a fill on Tuesday. He was concerned because there was some redness around the mc scar on my left side sout me on levaquin and I saw him again Friday. He thinks if it was an infection we caught it early but thinks maybe the scar was just changing. TBD,
,my last chemo is Wednesday, yeah!
Thanks for all the birthday wishes, I had a good one.0 -
Hi ladies. Just wanted to pop in and say a quick hello, and I hope everyone is doing good. Penny: Hope things are okay with you and going in the right direction. I go for round #4 of taxol / herceptin. After that 8 more round of drinks to go before surgery. Everyone have a se free week. I will check back in after I get back from ohio on wed.0
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Penny, glad you're doing better. How are you feeling now?
I've been a little under the weather. Have a slight fever, I'm dizzy and light headed and just generally feel sick. I'm supposed to get my first taxol on Monday. I wonder if I won't be able to? I hope so. I'm nervous, but anxious to get it started.
You're almost done SuperSally! Congrats to you and all who are finishing up. Heres a song for you, It' Over by Boz Scaggs
Best of friends
Never part
Best of fools has loved forever
From the bottom of his heart
So why pretend
This is the end
You'll have to find out for yourself
Go on ask somebody else
Chorus:
Why can't you just get it through your head
It's over, it's over now
Yes, you heard me clearly now I said
It's over, it's over now
I'm not really over you
You might say that
I can't take it, I can't take it
Lord, I swear I just can't take it no more
(Go away) go away
(Far away) so far away
It's too late to turn back now
And it don't matter anyhow
'Cause you were right
I'm to blame
Can't go on the same old way
Can't keep up the same old game
(Chorus)
I'm not really over you
You might say that
I can't take it, I can't take it
Lord, I swear I just can't take it no more0 -
Kay - be careful - what do you mean by a "slight fever" I left mine too long and have full blown cellulitis. Make sure they know about it before the chemo.
supersally - is yours still ok?
Saw both the Onc and BS today and they doubled my antibiotic doses to levels that would treat a horse (mind you I am used to that - when we were kids our dad was a Veterinary surgeon and he always used to treat us with the animal drugs! he also let us watch the operations on two little kitchen stools, the frist picture my sister did was the inside of a dog)
The have postponed the port removal but are hopeful I can do the next chemo on 27 May, even if they have to give me antibiotics at the same time.
Maria - thanks for staying on line - looked at your blog the other day and have ordered weekly organic veg to be delivered to us and both our kids houses, will sort some of the rest of it when I am the other side of chemo.
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I'm happy some of you are done or are close to finishing! Yay! For those of you who are not doing radiation or surgery next, what kind of follow up does your oncologist do? Do you get scans every six months or at a year? How do they monitor for possible reoccurrance?
I'm asking because obviously I had it for a long time, had no idea I had it and no "symptoms" to report. So if I am not monitored by scans and stuff, how would the onc know? I feel like I am going to go crazy worrying about it. Do I report every single little thing-keep a journal of every ache, pain, sneeze, or what?
I am doing radiation but I just can't stop thinking about the "after." I think I will drive myself crazy after it's all done and I'm not being monitored so much of the time like I am right now. Does that make sense?
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Penny - hope you are doing better and the stronger antibiotics are knocking it out.
Kay - hope you have called and/or seen your doc. Penny is right, sooner is better. I don't know if I had an infection or not last week. If so, we caught it really, really early with just the first signs of redness showing. I took 7 days worth of antibiotics, hoping that I'm done with whatever it was.
Colodisney - the "after" can be really tough in terms of anxiety. I'm not sure what my onc does for follow up, scans etc. I'm still on 6 month follow up with gyn/onc from cervical cancer 2 1/2 years ago. He was doing 6 month CT scans before and we are going to move out to yearly. Not sure abuot BC and med onc, tbd. I'll ask that question this week.
My last chemo is on Wednesday - yeah!!! I'm so excited to get it over with. I, too, plan to work on organics and better cooking and more/different exercise when I am on the "other side" of chemo. Right now I'm just too exhausted and not putting the time into anything as I should be. DH was upset I didn't spend enough time wtih him, I'm not putting in enough time at work, I have errands to do, and I need time for me to chill also! I'm just not going to worry about it for about the next month. Everything will work out!
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Hey Ladies! It's Monday and another week. I am still fighting the rash itch....ick! It is getting a little better but still not gone. At night it's the worst with covers on....I just itch itch itch! I have bruises all down my legs from itching.....tons of them! Gross! Oh well - hopefully in a few days it will be gone. I am just worried that it will come back again once I am off the steroids. Crossing fingers that doesn't happen. How come I am done with chemo and still dealing with side effects???? Seems wrong to have new things pop up after you are done.
Supersally: I am SO GLAD Wednesday is your finale! That's great! You are almost there girl.....
Lorenar: Glad you popped in! YOu are knocking out those chemos...before you know it you will be done too. You are making progress which is great.
Kay: How are you today? Did you end up getting your Taxol??? Hoping you are feeling better....
Penny: Hoping you get better soon so you don't have to delay your treatment. I know you just want to get done. I have not looked into organic delivery....that sounds even easier than going to the store! That's great. I am still sorting it all out too...I just bought all new glass food storage containers with BPA free lids. I am trying to eliminate all this stuff but it's one step at a time. Glad you got a start on it. I still have more to get rid of and eliminate.
Colodisneylover: I am have my exchange surgery next month and don't need rads. Right now they tell me the only check ups are going to be physical ones or if I have some type of symptom I should call and report it and if warrented they will order some type of scan. I feel uneasy about this too....so I am just suppose to live and hope it doesn't come back and not know until it is too late. I am getting some serious counseling as I don't even know how to begin living like that. It makes me panic. Maybe others that had a more progressed situation will get scans....I don't know. My docs wouldn't even do a scan before chemo because I was stage 1. I freaked because I had angiolymphatic invasion - it could have spread but no one checked. I hate BC!
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Hi all, just popping in to see how all the girls have been. I havent been on a bunch, just am finding that after chemo I am so sick I cant drag myself to the computer and then when I feel better i spend the next 8 or 9 days working full time and house cleaning and trying to be super mom and wife its really tiring. but I think of all of you and will be try to be more diligent in the future. I am in for treatment number 4 on thursday, not ready, not wanting to go really hoping the switch to doxetaxol will be easier than what I have just been through. Hope you are all having a wonderful SE Day
Hugs Kymn
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Thanks for the concern ladies! Temp was only 99.6 yesterday, but it had only been about 97.5, so it was up a little. Today it was 98.5, so got the Taxol! The nurse did stay in with me for 15 minutes, but no emergency set up in case of allergic reactions. As soon as they started the benedryl, my eyes got heavy and closed and pretty much slept or close to slept the entire treatment. Long day, was in at 8 and didn't finish until 3:30. I had Herceptin too. Now I am going to have to be going every week because of the Herceptin, will only get the Taxol every other week though. I am awake now. I guess the Benedry has quite an effect on me. They said next next time they will try using less. I feel really good right now though! And no more emend, neulasta dexadron or anything else (except the stool softeners and laxative). Woo Hoo!
Hoping you're getting better Penny! Good Luck SuperSally on Wed and Kymn and everyone else in the chair this week! Know what you mean Maria. But it will also be a relief to not have this take up so much time. Although being on Herceptin, that won't be for a year for me.
Have a great day and week everyone!
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Maria - re follow ups, I am stage 3 with 7 pos nodes and they say the same thing - no scans just clinical exam. They have alot of data that shows repeatedly scanning us does not improve our life expectancy.
I guess we are going to have to just learn to manage that mentally and not panic at any ache or pain.
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Temp has settled at about 100, which is much better than the 102 it was on Thursday.
Good luck tomorrow Supersally and Kym for Thurs. Kym - the fatigue does the same to me, too tired for anything for the bad days, then too busy for anything else when you get well enough. Not a very good balance is it.
Kay - hope you sail through the Taxol and Herceptin
Got a big bunch of pink roses, and a lasagne for dinner from my employees - such lovely people.
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Had my first of 4 Taxol treatments yesterday. Seemed to take forever! Got there at 9:30 for labs and didn't get home until 4:15.
Didn't have any bad reactions to the steroids the night before or anything. I was reallly surprised! I was expecting a sleeples night and ended up sleeping just fine. Didn't have an allergic reaction to the Taxol either.
So far I feel much different after the Taxol than after the adriamycin. I'm not in a horrible fog and I actually feel functional. This is only the day after chemo, so we'll see what happens. No bone pain so far. I don't know when it is supposed to show up, but so far-so good.
Last night and today my face is really flushed. I thought maybe I was running a fever, so I checked my temp and no fever. Must just be a side effect of the Taxol or the steroids. Hands seem good.
Good luck everyone!
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Tomorrow is my last chemo - yeah! I'm really excited to get it behind me. Steroids working for me today, which is good because I have a million things to do. My mom is coming in this evening to go with me, can't wait to see her.
Kymn - good luck Thursday.
Penny, Kay, and djls - I hope you are all feeling better and not having a fever.
Have a great day!
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djls, I was told steroids cause the flushed face.
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Hi All,
Well today was my last and ( God, Budda, Mother Earth, Allah ) willing it will be my final. Geez I can't imagine having to go through all of this again. I am looking forward to getting back to my "new normal" whatever that will be. Just remind myself from time to time an old Doris Day song. Life is so unpredictable. In October we had a family dinner for my BF son. The other woman that is my age that was at the dinner just got diagnosed with pancreatic cancer, scary. I feel like this new normal is going to take a lot of work, for one I need to lose this 10 lbs I gained from steroid use and self indulgence. I really will be going back to the gym, I needed to stay away cause I got really sick and did not want to risk another hospital stay.
Honestly I am a confused as to which direction my life will take now. I want to change, I want to live life harder, fuller, and more complete but I'm not sure how to do that. My reality is I may not have another opportunity, cancer does/can shorten our lives. What do I do with the time I have left?
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I, too was told no scans beyond the annual mammogram (although I will argue for an MRI), and I was lymph-node positive, stage III. When I was really depressed a couple of weeks ago, I voiced this to my DH, stating "What if this doesn't get all the cancer and it comes back?" His response was simply, you can't think like that because that way madness lies (I know, Shakespeare). It's true though, we just have to try and keep it out of our heads...
timerdog (yay for being done!): I'm not done yet (3 more chemo then on to rads), but I feel like you. How do I change and improve my life? I think we will all do so in gradual steps, perhaps without knowing it. Our lives have changed, and hopefully, we can make them better.
Yay for you, too, supersally! It's great to see some of us finishing up!
I was getting flushed after each chemo for about 3 days, I didn't realize it was the steroids.
djls: my first taxol was so much easier. I had bone pain (specifically knee pain) for about 3 days, starting about 2 days after treatment. Not bad.
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Hey ladies...I am still dealing with the itching from the allergic skin reaction but saw a dermatologist yesterday and got a topical steroid in addition to the oral prednisone. Can't wait to be off steroids - all of them! I am eating toooooo much! Yikes! As far as the flushed face...I had it around chemo time too - I figured it was from the steroids. It only lasted a few days. I didn't mind as I did not look so pale! LOL!
Kymn: Hoping you are not in a fog for 8-9 days anymore......glad you popped in though!
Kay: I am glad you were well enough to get your treatment and there were no delays. I should not complain...I don't have herceptin as you will for quite some time. I am glad you are moving forward and getting the Taxol started and hopefully it will be over with soon!
Penny: I guess it is going to take some serious pharmacueticals and counseling to figure out how to live like this moving forward......I know this is going to be hard to not freak out and worry all the time after everything we have been through. Lasagna and roses....two of my favorite things!!! So sweet!
DJLS: I am glad you are not in a fog from Taxol. I hope it is easier than the previous treatments....crossing fingers!!!! Keep us updated on how the next several days go.....hoping NO SE's!!!!
Supersally: Good luck tomorrow!!!
Timerdog: I am with you on the life changes. We are making lots of them to live a better life. I am going to quit my job so we DH is looking for a new job...that means a move. I am sick of my job and it has too much stress....we agreed it's not good for me so we are moving forward with changes. I am going to pursue other things for employement once we settle. I plan on working in a part time capacity and enjoying time with family. I also plan to make sure my health is a priority - exercise and eating well (Anti Cancer book lifestyle) so I can do everything I can to keep this from coming back. I also plan to get involved in some way with BC patients...hopefully through exercise, public speaking and nutrition to help empower them to feeling good while going through all of this. I don't know what that will look like yet, but once we land somewhere (jobwise for DH) I am going to see what I can do. I also just want to be a good mom and wife and not deal with corporate America anymore.....I am done with how powered high paying jobs and high stress....it's not worth it at all. I also plan getting counseling to get my head on straight......I still have a lot to deal with. It's a process....I guess I figure I can keep doing what I have been doing or do something drastic to change my life for the better. It comes at an expense...we will have to move from famiy and friends. That part will be hard....
Maxine: I agree...I do think we have all changed. How can one not change after going through this? I guess we have to take time to appreciate things, count blessings, cherish moments, look ahead to a life that is enriched by love, family and happiness......I don't know what that looks like...it is in baby steps.....though we are planning to take some giant steps soon in our life with a major move. I hope it's all for the good.......hoping and praying. Glad the taxol has been easier....that's such good news.
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I agree with those who say the "new normal" is more of a process. I think it takes time to sort things out and allow things to fall into place.
Prior to my dx, I had a different kind of strength. Since my dx, it's not that I necessarily feel weak, I think I feel more dependent on others than previously. I'm not trying to fight it....but making myself adjust to it. And I feel the more intense depth of love from my DH, DS and other family members. At times that can be overwhelming. Yes, the love was there before, but now it is more present, if that makes sense.
There is a lot we all deal with during this time! Plus, you know my mantra, we must be easy on ourselves and with ourselves!
Thank you, all of you who make up this forum, it is good therapy for me!
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...and timerdog, I think if you want to live your life harder, fuller and more complete, as your life continues to unfold, situations will present themselves to you. You will then make decisions/choices based on your desire for those things in lfe that make you feel more complete.
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I am so enjoying Boz Scaggs' song "It's Over"! Have you noticed I keep replaying it?! Thanks for suggesting it, Kay.
I appreciate everyone who is weighing in a sharing what's happening currently with the chemo. I'm having a very good week (yippee -- it's the small victories, right?) but on 5/27 I'll experience my first Taxotere so am trying to psychologically prepare for that.
Just picked up Crazy, Sexy Diet book at the library. It's written by the Crazy, Sexy CanSer author. I think the Divine Mrs. M first got that on my radar. Love how she talks about having been a "stress slut". I'm betting, mdg, that that is some of what you want to get away from when you say exit Corporate America...
Timerdog -- "what do I do with the time I have left?" Thank you for so eloquently stating what I keep cycling on! That is the question, isn't it?! I don't have my answers yet but I am hard at work at teasing out what I will choose to do next. "Choose to do" being the operative phrase -- life is way too short to be guilted or otherwise pressured into anything.
Wishing everyone minimal/no SEs, no fevers, no delays on treatment. Stay strong! Big group hug!
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timerdog - hurray last chemo, so pleased for you
Re where do we go next and what do we do with our time, I had find myself making lists of things I want to do and then I realised I was planning on rushing from one thing to the next in a demented way.
I have decided that what I am going to do when I come out the other end of the is to "Do Happy" Both for me and all the people that have been lovely.
If it makes me happy to get a good book and sit on the beach and read it I will do that
I will think every morning about one thing I can do however small to make one of my lovely family and friends happy that day and do it,
I will plan a few things for each year/month/week to make sure I don't waste time, but not be too rigid with it
I will be more spontaneous - if I see a concert or someone asks me to come for a picnic I will just do it and not think about whether its too much effort
I aim to extract as much happiness as possible out of all the normal things, we spend most of our lives doing everyday stuff, I don't want to just enjoy things on the todolist I want to have more fun doing the ordinary stuffGod that sounds sugary, but nevertheless it is what I plan - having said that maybe I will go back to working 60hrs a week and drinking too much, but hopefully not.
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Supersally and Timerdog, congrats on being done! It is fun to see our March group get done and closer to done!
Penny...great statements...words to live by.
Maria, glad you have come to a decision. It will all work out!
Kymn...hang in there. We're in this together girl.
4 1/2 days of school left for me. And the toughest days as far as stuff to get done. Was at school until 9:30 last night. Not doing that again. Way tired today. Fatigue tired. I should know better. So hard to break those habits.
Thinking of you all this week!
Kristy
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Hi everyone. I am 6 days post first Taxol. It certainly is a much different ride. After A/C, there was so much fog and so many side effects and the first 4 days were a big peak and deep valley due to the steroids. But I woke up Monday morning this time (day 5) and didn't feel much difference from other Mondays. I am slowly losing the rest of my hair. Every morning I wake up and make sure I still have eyebrows(still barely hanging in, but they are so itchy. I know they'll leave me soon) Not looking forward to having to draw them on before work!
The biggest SEs from Taxol for me were bone pain from day 2 through day 5. I am so sick of taking pills for pain, etc. Before cancer, I took maybe 2 Aleve all year. Hate drugs. Now I'm forced to take Prilosec to help my poor digestive tract survive. The other big SE is burning in my hands. Felt (and looked) like I had placed my palms on a hot stove.This lasted 5 days. I have roving numbness and pain in my fingers and toes still today. I am also severely anemic and my onc didn't give me anything for this which surprised me. So my energy level is so-so. On work days, I pretty much hit the couch when I'm done. Not much of a life... The good news is that the first 4 days after Taxol, I slept like a baby! Must be the after effects of the Benedryl.
I, too, think about after treatment is done. But for me, this is a long way away. I still need to have surgery and radiation. I need to have a suspicious lesion in my shoulder biopsied. They are almost certain it's not related to BC but it is still a concern. I have 3 tx left but realistically, I probably have 4 or 5 more months of crap to get through. Very, very discouraging. Then what? Who knows. Haven't even been properly staged yet. I'm told this happens after surgery. So much up in the air that I force myself to live one day at a time so I don't drive myself nuts. People ask why I keep working. One of the main reasons is that I figure I would drive myself crazy staying home and having more time to focus on the "what ifs" Do they ever tell you what your odds are?
Okay, I've whined enough. Must be the weather.Thanks for listening. Hope everyone has an SE free day.
Sue
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Penny, I like your list and will be following some of your suggestions; they make much sense to me.
Suebee, I was questioning my continuing to work. I will have the summer off and could make the choice to not go back to work when school begins in August. At first I thought that's what I'd do, but now I want to continue to work. My only child will be going to college this fall and then what would I do if I don't work part time? It seems like I would have too much time on my hands! I continue to work now but take time off when I feel its necessary. Work provides a different outlet, so I think I understand your wanting to keep yourself out there working.
About your treatments, hang in there. I, too, had to get used to taking so much medicine after never taking anything much stronger than Tylenol my whole life. I am learning to adjust to it and find some humor in it. Even my husband joked with me last week. I asked him if he'd mind if I took an Ativan because I was feeling some anxiety and he said, 'honey, take whatever you want, would you like a beer to go along with it, too?' Basically, he was saying, do what it takes to help you get thru this rough patch and no one is going to judge you for it.
Re: the feeling of having stuff 'hanging up in the air'--you sort of have to adjust to it; it all settles back down after awhile.
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