Illinois ladies facing bc
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Madmom Narcotics made make me nauseous. Anesthesia made me nauseous. I can't hold my liquor either. Chemo, never took any of the nausea drugs except for the emmend. I too was surprised. But as others will tell you there is no reason to be nauseous on chemo. If the drugs you have are not working demand other drugs. They are more expensive but there other drugs. These days you shouldn't have to deal with that SE.
If they haven't told you be sure to let the Nuelasta warm up outside the fridge for at least 20 minutes. If it goes in cold it will sting. Are you having them do it? My husband gave me mine. I also heard slower is better but I don't remember. I got mine on either side of my belly button.
BTW I just spoke with my dad. It's not going to be quite as bad on the cape. More like a heavy storm with lots of rain. I think the predict the winds at only 50mph. We get that in Chicago all the time. I assume that's the same for the Boston area too.
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Hi Madismommy -- I remember that week leading into chemo, I was a complete mess, what to expect? How bad would it get? Well, it wasn't a complete walk in the park, but it was never as bad as where my mind went to. I had mild nausea twice... I was religious about taking the premeds, even though, for sure, I did NOT like the decadron. I set the alarm on my phone so I would remember to take the meds as prescribed, and it really did ward off the nausea for me.
Hang in there..... a week from now you'll be looking back and figuring out that you can really deal with it.
My cousin's daughter is getting married today in..... Boston! ... what terrible timing. I'll be worried about my family all weekend, since what they should do is prepare, and go to the basement, but with the pressure of being IN the wedding, they will have no choice but to go forward if the bride and groom press on despite the weather.
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Thanks for the encouragement!!!! I'm sure I'm over the top with my anxiety and what I picture going through. That's a great idea to use my phone as a reminder, I've been trying to figure out how to keep track of when and what I need to take. And Lago, thanks for the warning on the neulasta.... No one told me that, I even questioned that to my DH.....if it was to go in cold. My mom's best friend is going to administer the shot for me, shes a surgical nurse (actually, she was in the OR during my BMX). My husband is terrified of needles and we aren't confident he can handle it. LOL
Lisa....I hope the bride and groom don't press on if there's any kind of risk to people's well being?? What a crappy day for a wedding in boston though, that really stinks!!!! I'll keep your family in my thoughts too!!!!!! Lago, I hope the 50 mph winds is correct, that sounds WAY better than what the media keeps saying.... But they tend to way over exaggerate everything. We deal with 50 mph winds every winter!0 -
Oh, and the decadron....I've heard it really keeps you from sleeping and my instructions are to take two the NIGHT before and than the NIGHT of.....I have some major insomnia problems already, can I take these more like early afternoon instead??? If I don't sleep for 2 days I'll be an even more emotional basket case than I already am???
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Madismom, I cannot remember when I took the decadron but I do not recall any sleep issues. I was never one bit uneasy in the stomach, but had other issues. I think at least for me that it was better that I knew zip when I was in treatment as I tend to get whatever they say could happen. I did not even get on this wonderful place until way after chemo so I just took my pills,, went to work, and was a couch potato for two- three days with each treatment. Just took one day at a time. I do recall that lots of water and walking helped even when the thought was awful to do so. I know knowledge is power, but for someone like me, too much knowledge is not good.
Rita, loved the book and want to see the movie. Jackie, I am reading a book that might be of great interest to you. DH's cousin wrote it. It is about his spiritual reawakening while visiting Hawaii. Some parts are quite strange, but I am loving the mythology of Hawaii. He self-published his book as no agent! I will send you my copy when I am finished. Tell me what you thinkl. I do not know him very well, but Dh said he has always been different from most of us and has been searching for something nearly all his life.
I am hoping and praying that all on the east coast are fairing as best they can. I also have WendyTY on my mind. Hope all is well, our dear Wendy.
Going off to the Botanic gardens to learn/select some heritage tomatoes. Anyone like them?
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I didn't have to take decadron the night before..... they put it in the IV in the premeds before the infusion.... In fact, I didn't have to take anything at all in advance, just after, the first half hour or so of the infusion was all premeds. Is it too late to ask about that?
The decadron sucked...... made me jittery, too energetic, and sleepless....also made me VERY emotional, and finally I had to ask for anti depressants just to cope with the side effects of the meds that I was taking to prevent the side effects..... kind of like an Escher print of meds and SEs! But it also worked, and prevented the nausea. No reason to suffer in silence, ask for what you need...... I felt so much better when Joan told me decadron had the same effect for her and that an anti-depressant helped her too..... gave me the strength I needed to ask for it from my onc.
You are not over the top about this, it is scary... when I sat in the chair for the first infusion, I was in tears, and my blood pressure was hysterically high. Once I got started, I was OK, and honestly, going the second time was fine.
My mother-in-law, a Stage IV melanoma 10+ year survivor...... really helped me put it into perspective....when she toured the infusion center for the first time, her reaction was initially, fear... then she chose to think of the infusion center as a place of healing and hope, where people are beating cancer every day.
As I type this I am so worried about my kids...... four grandparents, ALL have had cancer, I lost both my parents to cancer before I was 40 and my kids never got to know either of them. Hopefully all of these awareness initiatives leads to the funding that gets us to a real cure.
Enough on the soapbox, I'm done now......
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I know I'm kinda the odd ball but I loved the Decadon. It kept my swelling down. As soon as I stopped boom 5-8lbs in 2 days. I never lost sleep or got the jitters from it but I do think the Emmend made me spacy. No driving on Emmend for me. It messed with my eye sight too.
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Madisonmommy - hang in there, not know what to expect is the worst - once you start at least you will be past that part.
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Jenn/MadisMom - Cheering you on, big time! You CAN DO IT! You've surrounded yourself with experts (US)! Best wishes...
mak - Hope you're feeling okay and enjoying the weekend. Yesterday at the pool was short but sweet! Let's do it again next week.
WendyTY - How are you doing?
LisaMom - Wow...your family cancer history sounds similar to mine...I'm sorry! Hugs!
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EVERYONE...thank you for always being here...I truly appreciate each and every one of you. Be well...
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Hi everyone - I am right over the border in Kenosha - last stop on the North Line..... married to a Bear Fan - so can I join?
It is nice to see everyone - and I hope over the next few weeks I can get some information about 2nd opinions in Chicago.
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The cancer history is overwhelming. It may sound simplistic and I apologize if it is, but my dd and her husband have become so conscious about food, water, cleaning supplies, lawn care, toys that end up in the mouth, you name it, in an effort to perhaps counteract the environmental angle of cancer. It takes time and money to be so conscientious (try cleaning a grimy counter top with a mint and vinegar solution
! I am not sure it will work for her, but I sure hope so.Edited to welcome Pebee. I live in Northbrook so about 40 minutes from Kenosha. How can your husband live in Wisconsin and GET AWAY BEING A BEARS FAN? I would be terrified for my life. Only kidding somewhat (I think). There should be people here who can give you a suggestion on a second opinion. I am on an HMO and all my doctors are in Highland Park. Drop in often.
Susan
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Peebee, I dont follow football, so even if your man did like yellow and green you would be welcome here. My Onc left me for Racine. I loved him. Ryan Engel. Dont know if that is too far. Let me know if it's not. Sorry you have to be here. Onward
MadisonMom, Taxol was no more difficult than the A/C. You can do this. But if your meds are not working, get different ones. No reason at all to be dealing with those side effects.
Onward
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Madismom: I did 6 tx of TAC. You can do this. Do take your meds as you are instructed. I would set my alarm to stay on track. I also get a flowsheet to write down what med was due at what time and would record when I took it. Once chemo brain set in I did have a hard time remembering stuff. I had terrible sleeping problems on the decadron. I finally made a call to my Onc for a script for sleeping pills. She gave me anbien but I think the Xanax worked better. Don't be afraid to call your Onc for anything/everything you need. As far as nausea, I really didn't have too many problems. I once have a cheeseburger while in the chemo chair! not a good idea. After that I stayed with pretzels, gatorade, green grapes and ginger ale. Just take your meds and you should be fine. Its not fun, but it is doable.
Navy
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Onward...I'm getting the dreaded taxotere and not taxol. I still find the chemo cocktails interesting, how my stats could be identical across the board to someone. Age, nodes, size, stage, etc and we do a different regime because we have different docs.....
Thanks everybody....I spent my whole day stocking up on stuff..... If I'm not armed with enough stuff to fight off the s/e's than it's just meant to be..... I'm also making some of my Grandmas homemade chicken soup tomorrow, because it's always comforted me thru life's crappiest times....and going to make some fruit salad because when I'm nauseous I tend to like fresh fruit and applesauce and yogurt the most..... And I bought ginger ale, ginger tea, ginger chewy candies (that look disgusting btw), and crackers and cranberry juice, and jugs of water......and every OTC med for constipation, diarrhea, bone pain, heartburn, hemorrhoids, headache, dry eyes, mouth sores..... Lmao. "crazy, party of one....your chair is now ready". I did go to the outlet mall and treat myself to a Vera Bradley bag to take to chemo and a cute plastic lined cosmetic bag to hold all my meds in one spot while not home.... That made me happy!!!!
Pebee....of course we welcome you....
And wow Lisa, all 4 grandparents??? That makes me sad and angry all at once....why is life so darn unfair sometimes?
All you ladies give me so much strength because I see how you've made it through this leg of the race and I know I can do it too!!!!!! I'd love it if we could fast forward to dec. 13th though?0 -
one of my favorites from jlh:
Dance with a Light Heart - play with life, laugh with life,
dance lightly with life, and smile at the riddles of life,
knowing that life's only true lessons are writ small in the margin.
- Jonathan Lockwood Huie
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Hey hi, I'm running late today.....not working extra....just taking care of some loose ends. Welcome Pebee. I don't do sports unless you call walking to my car and back sports. I hope you like it here....we all do.
Mad....what is the name of your pharmacy. You are prepared for anything -- wouldn't it be great if you got your chemo and didn't need any of that stuff. Seriously, I think we all secretly envied those who were through or nearly through. Looking back for me it seemed to have gone fairly fast....didn't seem so while going on. I hope you will look back and be so proud of the accomplishments you will make. We are going to be holding your hand, cheering you on and otherwise not letting you have too difficult a time.
Thinking of you Rita. Hope all went well for you today.
Marina....hugs to you and big hugs to WendyTY. Glad you are sleeping.
I'll be looking for all of you early tomorrow....
Hugs, Jackie
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The highest revelation is that God is in every man. ~Ralph Waldo Emerson~
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Madisonsmommy: I did 4 cycles of taxotere and cytoxan. It was not that bad..honestly. It was not fun, but very doable. I usually get seasick super easy and I did not need one nausea medication....I threw them all out after not using any of them. My biggest issues were
bone pain after neulasta on cycle one...after that I started taking Claritin and Aleve and had NO bone pain at all
lost my sense of taste - came back about 2 weeks after finishing chemo - it came and went a lot during chemo
decadron made me have tons of energy - I only had issues sleeping one night on it. I took it 2 days before chemo and the day of chemo. I got super hungry from decadron and ate for several days post chemo...all I wanted was carbs!
fatigue...not bad but I had it a little a few days post chemo (days 3-5 post chemo). It did not keep me from exercising 5 days a week for an hour a day through all of chemo
I did everything "normal" during chemo. I left the weeknd after chemo open with no plans just in case but the other weeks I did everything we would always do.
Oh - constipation was an issue for me (usually I have the opposite problem due to IBS so I didn't know what to do with this!). I would take Senakot S once a day and a stool softener once a day starting on chemo day and for 4 more days and then had no more issues. The first time it was horrible before I knew I would have this issue.....
As far as food - I did also make tons of homemade organic soups and froze them for chemo week. It was good comfort food for me and loaded with veggies which was good for me.
I hope you breeze through chemo like I did. We are close so if you need something.....let me know. I am happy to help!
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MadMom I did the 6 TCH (taxotere/carboplatin). After the first 3 tx I was working out 60+ minutes in the gym the next day. I never got the extreme fatigue although I did get tired earlier at about 5pm. Taste change at lasted about 3-7 days (it gradually progressed) but it was very minor change. I took Aleve for nuelasta bone pain for 2 days. I had lots fo fluid retention (5-8lbs).
Some nueropathy but once I started taking Acetyl-L-Carnitine it was only in my left heel (still have that). I did have issues with heartburn so I was on a couple of drugs for that. Constipation was really bad the 1st round till I figured out what to do. Started taking Metamucil the night of chemo as directed and stopped on Friday. (I had chemo on Tuesday too). It kept things moving.
the taxotears, twtiching eyes and stiffness didn't start till the 4th treatment. Also the pads of my feet would hurt if I was walking a lot and I mean a lot.
I did get the rare nail lifting thing… and I got it pretty badly. The nails first started to hurt and turn black after tx3 then it was all downhill from there. I don't know a lot of people that experienced the nail lifting.
It sounds horrible but to be honest the flu or a bad cold have much worse symptoms for me. Most of the time I was pretty functional and going out. Just couldn't drive on the days the emmend made my eye sight funky.
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O heavens...such a dream I had last night. Wendy, I dreamt we bought a house and then discovered you were our next door neighbor. We had horrid shag carpeting and no furniture. I have no idea why I dream what I dream....like shag carpeting??????
Chemo meant that my food expense was off the charts. I craved prime rib, broccoli and garlicky potatoes....every night.
I hope all the east coast relatives are safe as mine are.....just rains for mine but no floods.
WendyTY, always on my mind....hope today is good! Madisom, you sound so prepared! Good luck, you will dio great. The chicekn soup will see you through, as will the strength of your grandmother that still runs through your blood.
Have a good day.
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Hello~ ladies~!! It's been a long time... I hope everyone is doing well and getting better..
Big WELCOME for the new ladies~!!! I used to live in Naperville, IL and now I am in OR and I miss my sisters very much..
I don't remember when was last time I post or read.. We had good time (vacation) in Vegas with the family and was too hot, my LE got worse while we're staying in-laws house and the air vent got clogged so no cold air was coming in the room at all, the air was running half of the house instead of whole house.. wonder it was hot in the room..
I did find the LE therapist in town and she is doing her best to reduce the swollen on my left arm and hand but I didn't notice much different.. I do exercises and drainage massage but won't help.. I felt stiffness on my left chest, neck and shoulder.. When I had LE therapy in Chicago, it got better right away and I was very pleased but that's not happening.. What else can I do?? I just wanna put my wedding ring on my finger again..lol
I do post more on FB than here these days.. I will try to come here more often and say hello..
I miss you ladies so much and think about you everyday...
Talk to you later and have a good evening~!!!
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Evening! Well...almost! Cool breeze coming in the windows. Beautiful weekend....
Elf....so nice to see a post from you! Sorry your LE therapist isn't able to help you more. We miss you too!
Susan....that is a very funny dream! I doubt my neighbors have shag carpeting and neither of them are moving but it sure would be fun to have you guys next door!
MaddJenn....I also did taxotere/carbo and I had zero problems. While I realize everyone makes their own choices I STRONGLY recommend you take the anti nausea meds. It is sooooo much easier to prevent nause than to treat it. Regarding decadron I was told not to take it after 5pm or it may interfere with sleep. I too exercised all thru chemo...I really think it made a difference. I'm close to you so if you need anything, pm me or my cell # is on the addy list. You will do fine and if the meds don't work....CALL AND COMPLAIN! No reason to suffer as there are other drugs to try.
Off to see what's for dinner.....me hungry !0 -
Sorry I've been MIA. Thank you all for the wonderful birthday wishes and cakes. They all looked so good. It's been an interesting couple of weeks. Yesterday I started sleeping again and feeling better. Reminder to everyone, check and recheck the side effects of the drugs your taking on a regular basis. I know it can be a little tricky. I can't believe I suffered for almost 2 months over something as stupid as Prilosec. Anyhow it's behind me now.
I see the doctor tomorrow. I'm assuming I'll be starting back on the Herceptin. I'm going to ask for a break from the Tykerb for a couple of weeks. Then maybe I'll go back on a decreased dose. I'm actually feeling human again and would like to enjoy it for a little bit.
Mak- Hang in there. Gemzar can really mess with your counts. I was all over the place and couldn't stay on schedule starting with the first round.
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WendyTY....hi, it's nice to come on here this morning and see a post from you. Glad to hear you are sleeping and starting to feel human again!!! Good luck at the doctor! Hugs to you!
Mak....sending you a hug too! Hope you are doing well!
Wendyk....I have such bad sleeping problems alteady (ambien CR, Xanax, Tylenol pm don't work!) that I think I'll take my decadron before 5 today for sure.....even though I know I won't sleep much tonight. Why must our minds constantly worry and wonder? And I will definitely be all over the nausea meds....it's my biggest fear!!! And I am pretty good at complaining over the phone if those don't work! :0)
Zap....very bizarre dream, lol.... If I get chemo cravings I'll be so happy!!! Could you still taste stuff normally too? That's another s/e that I'm not looking forward to. Every bite I took this weekend, I savored it like I'd never taste it like that again.
Mdg....maybe once I know when I'm going to have s/e's and how bad we can meet for a walk along the bike paths??? There's really great trails that stretch along the fox river, through the forest preserves and towns!!! Walking tends to be my exercise of choice.... Wendyk can join us to one day hopefully too?.
Lago....did you take claritin or zyrtec for the neulasta too??? Teri told me take zyrtec but I took that a few years ago and it made me feel horrible, so I'm trying claritin. So, tomorrow....I'm pretty nervous....I was told I won't feel any of the drugs going in.... I hope that's true?!? I hate that feeling, not sure how I'd sit there for 4 hours feeling that.....
Jackie....I went non stop yesterday with food prep too, homemade chicken soup w/ veggies, I saved all the broth and strained the extra incase all I can handle is drinking it. I cut up fresh fruit and made two other soups (more for my family to eat in the event I am too tired to cook) and cut up fresh tomatoes and cucumbers for salads or to just munch on....my daughter will take them to school for her healthy snacks. I did ALL laundry incase I don't feel like doing it for a week....
Basically I am preparing for the worst and hoping for the best!!!! It's my only way of feeling "in control" of the situation.....
Can someone please catapult me into 2012??? I'm so over this year.....
Hope everyone enjoys their Monday! Sounds like it's going to be beautiful!0 -
Just a quick hi before I take off for my freelance gig.
Madmom I took Zyrtec. The first week I was all spacey from it but those kinds of drugs always do that to me. After that I was fine. I would always feel the benadril going in. It too makes me a little spacey but not too bad. Never felt any of the other drugs going in. I never took claritin. I didn't know about claritin till after. BTW the 1st neulasta was the worst. I got really bad back pain. Next 5 times not so bad but I took Aleve (with teri & cobleigh's OK) for just the 2 days after for bone pain. You will do fine tomorrow. Isabelle is awesome. Tell her I said hi and see ya next week.
Waving to Mak & WendyTY. Hope you both continue to do OK.
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The best day of your life is the one on which you decide your life is your own. No apologies or excuses. No one to lean on, rely on, or blame. The gift is yours - it is an amazing journey - and you alone are responsible for the quality of it. This is the day your life really begins. ~Bob Moawad
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WendyTY - such a great note. Sleep that refreshes, heals. Here's hoping that you are able to catch up now.
Mad......you are so prepared....I'm still hoping you end up using almost none of your arsenal. The first one can seem the easiest in retrospect, as the se's are cumulative, but so many of us felt them to be so anti-climatic. No way to predict how things will go for sure. You are so prepared though.....and the bottom line is you are going to be doing what it takes to get and keep you well and a big part of the lives of those you love and care for, and who love you. I'm sure anyone of your loved ones would gladly take this burden from you if they could. This is your labor of love for them.
I did Taxotere with few issues. It was better than doing the A/C together. I helped save my own life so felt the issue's were minor -- that does take a while to formulate the positive thoughts, but they have been in my head for quite some time now.
Wendy....I think now I am hungry. Glad it is time for breakfast. You always give some good advice.
Marina - thinking of you and wishing you well.
Rita....hope things are ok with you. I'm thinking about you too.
See you all later on. I'm off to breakfast and some work.
Hugs, Jackie
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WendyTY, can you post the race you are doing per your caring page so we can check it out and perhaps make a donation.
Rita, are you going thorugh you five year checkups? I hope all is okay per Jackie's post.
I canned today. I can honestly say I will never do that again!
Hope all are well.
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Good to see posts from Elf and WendyTY! I was just thinking about you Elf and wondering how you were doing. Sorry that your LE is bothering you. WendyTY - thinking of you every day!
Mad - good luck tomorrow. The first one is very scary but it is usually uneventful!
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