March 2010 Chemo Start
Comments
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Les, your room with(out) a view reminded me of a quote by Gertrude Stein:
"I like a view but I like to sit with my back turned to it."
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So much going on ... Julia so glad you found relief. And to EZH for pushing. I totally agree with you Julia -- if I can find a way on my own, I'll do it. But I was reminded when I had my MX that this is not something to figure out on your own. Call for help.
I upped my water intake and walking today hoping that would reduce my elephant ankles, but no luck. I'll call the oncologist tomorrow. They don't hurt, they are just tight and ugly.
Someone asked how I handled the night-time stomach cramps and gas -- I had a hot pad on my stomach when I first went to bed. That helped. Then I would get up and go in the middle of the night and be okay for a few hours. I also ate more fruit and kept up with my Benefiber each morning. My recommendation - keep food by the bed! I would find myself waking at 4am starving and then start to feel nausea and have to get up to take a pill. I started eating a dried apricot when I woke up and that helped (also with the plumbing issue).
I'm on day 15 and still have my hair - well, what I have after I shaved my head. We'll see how it goes next week.
A couple of odd things I had heard and checked out with my doctor: no soy (feeds estrogen), no red wine, no green tea, take vitamin B. Doctor said the soy, wine and green tea is not really an issue unless I take an anti-oxident or eat a lot of anti-oxidents. That counteracts the chemo effect. And he said yes on Vitamin B as there are some studies that show it can help with the nerve pain in feet and hands. So one more item for your list for your doctors.
Warm hugs to all of you this week! (And don't feel guilty about light SE's -- you are lucky!)
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Heather: It was great to get your note; we do seem to be on the same path. Thank you for finding me! I will buy the book you recommended; I'm pretty good at perspective most of the time, but the down times need a go-to book. I had my first chemo today, and it mostly went okay. Long day, but i came home and ate a regular meal and feel just a bit off. I get decadron in my IV and it's known to hype up some people, and I can feel my heart banging away in there. No nausea yet (had emend at the hospital and some pills to take later prn). We should compare notes through out our treatments. Are you being seen at one of Phila.'s big hospitals? I'm an east-coaster transplanted to Seattle 2 yrs. ago. Lived in Boston for a long time, but originally from D.C. area. xxoo Sandie
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frosty - if possible try putting your feet up, laying on the couch with my feet on a pillow to elevate them helps my ankle swelling (that tight feeling). I get it if I sit at my desk too long - at home or at work - so maybe with the new job you are sitting still more? It helps me to get up every little while and move around (get more water lol).
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Thanks, groundhog. I'm thinking this may be related to the fact that I'm sitting at a desk now and not as active as I was before I started my job. I tried to get my feet up today. Tuesday morning it wasn't bad after sleeping, but this morning it didn't look like it had gone down at all. Uggh.
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Also someone on the TC thread mentioned lasix for relief of fluid retention, maybe something to talk with your doc about.
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Hi , it's good to hear everyone seems to going OK with their treatments - lots of good advice too, thanks. I got my haircut too yesterday in preparation for "the drop" in 2-3 weeks. Scans all OK except for a little area in my lung which they seem to think is "nothing", but they'll scan again in 3 months - more bloody waiting. But on the bright side, I start FEC tomorrow, and I'm ready to kick some cancer cells ass. Off to shop for some Vit B and a few more things for my chemo bag. I like the advice that if you have everything, then you won't need it. Fingers crossed.
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Two hours and counting to my first tx. I slept less then two hours. Not sure if it's the steroids or nerves. Either way it's going to be a long day. I take solice in knowing day one in mainly uneventful. I am scared out of my mind about the coming days. I feel that I am as prepared as possible...waist length hair is cut SHORT! Chemo bag is ready, food and drink that's easy on the mouth and stomach, made homemade chicken soup and premeds have been taken. Emla cream is waiting to be applied and my ride will be here soon. Too all my sisters, this morning I will be taking your strength, courage and knowledge with me. I wish you all peace, comfort and minimal SE. Thank you all so much for preparing me for the road ahead.
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I love it! Kick those cc's Hereandnow, our strong Abolition Army is primed for total success on all fronts from all points all over the globe. And here we are each of us at our keyboards helping, advising, supporting, sharing and so ready and anxious to congratulate each other! It's overwhelming to me how powerful this media is. I've lost track in my short time at this website how many times I've been helped and uplifted. Thank you Frosty, for the heads up on those items. A vegetarian for 40 years my daily staple was soy in any shape or form, who knew? And I'm surprised to hear that green tea is a no no, I'll return the stockpile I bought yesterday. Have a great day everyone!
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I met with a nutritionist yesterday and asked the soy question, and the answer was not the same as what I'm reading here. I was told that soy in the diet is okay - everything in moderation. What should be avoided is food containing modified soy additives, which have been altered as a quick/cheap way to boost protein in foods. I was surprised to learn it's in many Kashi cereals and protein bars and powder. The research is showing the modified soy has a link to cancers. Eating regular soy i.e. tofu, soy sauce, etc. is not panning out in research to be linked as previously thought. Things change so fast in science! I recommend working with a nutritionist, and it's often paid by insurance. That way you can go over your own eating styles and diet and get the best modification for treatment and beyond.
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Good Morning Ladies,
Just a quick hello to all and glad to hear that you are feeling better Julia. SuzyE, ALison34, Lovemygarden and lilye hope everything went well with your first cocktail drink, just remember you will win this fight!! Surprised, Anna, Ivamom and anyone else starting today sending good thoughts your way.
First day yesterday with the bandanna, wasn't as bad as I thought it was - got some great comments by co-workers I think the BIG hoop earrings did the trick LOL.
Hugs & Kisses To All My Sisters - Stacey
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Hey Ladies,
I was wondering if maybe we could get to know each other a little better. Tell how old we are, married, kids, how we found our "C" , etc etc etc. I borrowed the idea for the Feb chemo start board (that's where I first started before they changed my date) cause it's a great one.
I'll start
My name is Stacey, I am 44 yrs young (45 in July), married, have no children and live in Upstate NY (the real upstate). I had my annual mammo in July 09 (family history - Mom) nothing. In Sept. I was doing my self exam (yes I am one of those people) and found something that didn't belong. Got in to see my primary, ordered another mammo and Ultra sound and there it be. Biopsied in Nov 09, first lumpectomy Dec. no clear margins, second re-incision Jan. close clear margins onto Radiation so I thought, nope tumor to big so off to chemo. And here I am, on this wonderful, life saving board, with the strongest women I have the pleasure of sharing my thoughts, feeling, aches & pains, and my happy times with. Although, I would rather not be on this board (as I know none of you do) it is an Honor to be in a group of strong women. - Stacey
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Well, my friends, I guess there just had to be some drama! My schedule was: Benadryl, then the Herceptin, then the Decadron, then the Aloxi, and last the Taxol. So Benadryl first. About 3/4 of the wa through the drip I went from feeling fine one minute to my BP dropping like a rock. 50mg way too much for me. Luckily avoided blacking out completely but it was close! Onc and 2 nurses were a big help. It took about 30 mins for my BP to creep back to a safe normal of 115/75 which is when they started the Herceptin drip SUPER slow .... almost 3 hrs. I didn't feel 100% normal until the Benadryl wore off completely which took 2 hours...not sleepy at all but instead a little queasy/shaky. But after that I was fine.
Decadron drip, no SE other than the last 1-2 mins when my face felt flushed and my ears hot! Weird. But then that disappeared. Aloxi, no SE. Taxol, no SE. In all, I was "hooked up" for a total of 6 1/2 hours... Another half hour at the start for bloodwork/results. So 7 hrs in all, for what was supposed to be a 4 1/2 to 5 hr session. Oh well!
Had some chills the first hour or so at home but I think it was just an anxiety reaction waiting for SE which never came. Despite what I'd read/been told, I have no jitters from the Decadron and was able to sleep my normal 6-7 hours! :-) So far today I feel good but am going to take it easy. Ate small amounts of my normal food last night and my normal breakfast of steel-cut oatmeal.
I drank a total of SIX quarts of water yesterday and am certain that helped. Going to drink at least 5 qts today and 4 tomorrow. Then Sat-Tuesday back to my usual 3 qts before Wednesday's Treatment #2!
Hugs to everyone and especially to my TrekSis groundhog!! :-) -
hi ladies
had my first chemo cycle yesterday, not to good for me was up from 12.30 till 7 am this morning being sick every half hour and my ribs now feel like i have been kicked by a horse.
i rang my onc and hes prescribed me some different anti sick tablets to try
hope these work cos this is only day 2 and i feel like giving in - i am shatterd and sore.
xxxx
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Question: Am I the only one getting Taxol (currently) and all you other ladies getting Taxotere? I see a lot of T's in the list and was wondering if all of them stand for "Taxotere."
Alison34, which chemo drugs are you getting? The list shows only your start date. I hope your new meds work. Can your onc give you Aloxi as a pre-med? Don't know if it's called that in the UK, but its 'official' drug name is palonosetron HCL. Supposedly this may become the "new standard" because it works so well. Why suffer????
http://www.aloxi.net/PressRoom.aspx?Pagina=pressroom&SM=pressroom&Lingua=EN&ID=233 -
hi lovemy garden
i am currently doing FEC x 3 then TAXOTERE x3
the anti sick meds are ondansetron and domperidone but i have been so ill through the night was being sick every half hr from 12.30 last night.
i have been told to take more of the ondansetron as these are stopping a recepter in the brain that tells your body it has toxin so should stop me being sick, finger crossed but on a good note apart from the sickness i am fine xxx
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Alison34 So sorry that you were so sick last night, Hope you feel better with the new medication. Ondansetron (Zofran) gives me some control over nausea. I have now been prescribed Kytril which I have yet to pick up. Has anyone tried Kytril and can you tell me your experience? Today is day #8 and I think my biggest SE still is extreme fatigue. Does it get better?
Lovemygarden, I will be given Taxol *4 after the AC*4 rounds.
Stacey Good to know more about you. To continue with the introductions. My name is Sarika. I am 33 yrs old. Married and have a 5/12 yrs old boy. I have strong family history of BC (almost all survivors ye!). I too had a negative mammogram following a positive BRCA 1 gene test in July 09. I felt the lump in Nov 09, had dMX in Jan followed by reconstruction with TEs.
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Treatment 1 done! Uneventful as promised. No reaction or discomfort. The port is wonderful! I'm very tired since I only got 2 hours of sleep last night. The steroids have me bouncing off the walls. I am drinking water like crazy, almost a gallon so far. My onc prescribed Ativan to help me sleep. Now it's just a waiting game to see what side effects I will be plagued with. I hope they are minimal and manageable.
StaceyT, here are my stats...36 years old, married, no kids. We thought we had a little more time for kids, but BC has decided otherwise. My mom died of BC at the age of 52 in 2002, so I do my breast exams and found a lump. I am BRAC 1 and 2 NEG.
I hope you are all doing well. I will continue to update on side effects for the people coming after me.
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Hello ladies....to all that are feeling well...excellent! To those that are having a difficult evening...so sorry. Loving thoughts are with you.
Lovemygarden: sorry to hear of the looong chemo day. Hope the s/e's are at bay, you drank 6 quarts of H20? Wow, that is impressive...I couldn't get more than 3 quarts in! To answer your question about the "T", mine is Taxotere. Do some people get taxotere and taxol? I'm under the impression that its either Taxotere or Taxol and I don't know how the onc. makes that choice?
Alison34: Oh, I hope that by now your new anti-nausea meds have kicked in and are giving you much needed relief.
Sarikasd: Rest assured that as the days pass, you will feel so much more energetic. The fatigue does pass. I'm on day #16 (almost time to to do it all over again) and the energy level is just about normal..."old normal", that is. The third week is like a reprieve.
Anyone else's scalp feel like you've been wearing a very tight ponytail? I cut my long hair and have been wearing the "chemo" cut for about 1 month (note: looks like Ellen Degeneris) and I'm waiting for the inevitable falling out. The soreness lets me know that this hair is not long for the head! Some of you did the buzz cut before the fall-out...couldn't bring myself to do that!
I feel extremely lucky to have stumbled, in my mad rush for info. after the initial shock of diagnosis, upon this site. Fortune is looking upon us, we have found each other.
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Had my first treatment today. Everything went well until the taxol infuston started and I had a mild allergic reaction to it so they gave my Benadryl and then an Ativan to calm me down. After that it went okay.
I found myself very emotional but then the Ativan calmed that right down. I'm happy to have that overwith, now I'll wait and see.....
ps. I thought Taxotere was just the brand name for taxol???
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Hey all - congrats to everyone who made it through the first tx!! I am not a big fan of Larry the Cable Guy but do believe an appropriate sentiment is GIT 'ER DONE!
lovemygarden - (edited out video clip of Data swearing as the ship careens toward the planet's surface) what a day! Were you able to use the cold slippers & gloves? I hope it helped. BTW, my T is taxotere.
{{hugs}} to all my March sisters and brothers! Yes this is hard but WE CAN DO IT.
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hi everyone! I have nothing exciting to add, just wanted to give my stats...
I'm am 37 years old, single (& looking; bad time now I guess!!), no kids. I am an equine veterinarian, and I very recently moved and started a new job, right in the middle of my dx, sx, etc. I have no family history of BC, so had not started having routine mammos yet. I felt a lump last fall and totally expected it to be "nothing." I had a uni mx with an implant, and reduction on the other breast at the same time. I still have another week until I start but have already started obsessing about the date. I hope my first one goes as well as yours, Ana1973. Lovemygarden and alison34, I hope you guys re feeling better.
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Just got on again and read some of your posts.
EZH ; I haven't had my first chemo yet, but went throught it with my deceased husband and he told me that his scalp hurt when his hair came out. We had already buzzed it and it still hurt. He used to say his hair hurt. I couldn't imagine it, but I guess I'm going to find out.
Staceyt: I think it is a great idea to get to know each other. We are all going through it. I am a 59 yr. old widow with 3 grown children and 4 Lhassa Apso's. I guess you figured out I love animals especially dogs. There is no history of breast cancer in my family. So I was really shocked. I've had my mastectomy, and am going through pet scans, ct scans etc. now. will start my chemo about the 24th of this month. Not looking forward to it, but looking forward to getting it over and done with and getting my life back. I am a cashier in a busy grocery store and it has a big pharmacy in it. So I was advised not to work through chemo, plus it would mess up my disability. I miss my customers and co workers, not the work.
Hope every thing goes well for all. This is a wonderful site. and I have learned so much.
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Day2 after Treatment #1 of TC - feeling really good. I have been drinking water throughout the day and am eating Activia yogurt to help keep regular. So far so good. No nausea. I went for my Neulasta shot today and did tell the nurse that I could feel a couple of mouth sores. She said that was from the Taxodere and called the doctor for a prescription for Magic mouthwash.
Stacey T, my stats.... 63 years young, married 40 years , 3 children (ages 30,27,25).
My BC was discovered during a routine mammogram. BC on both sides of family.
4CM IDC micro traces in sentinel node Stage 2 HER2- ER/PR + Oncatype 22
Treatment: 4 X TC 6 1/2 wks of radiation and then the hormonal therapy
The "Kicker": I had cancer 7 years ago and had just been told that it was essentially "cured". It started as an external hemorrhoid, saw doctor many times about it, turned out to have squamous cell cancer that had gone into lymph nodes in groin area. I had chemo of Cysplatin and 5FU and radiation. Thought life would finally be normal again.
I really appreciate this forum and all of you strong ladies so much. I find that this is the first place that I go when I get on my computer. I think of you often during the day and pray for you all. Together we can get through this and get life back to normal again!
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So sorry some of you are hitting the wall with nausea. It does get better! I'm feeling almost normal. Starting to see hair fall-out, but from the legs up! I think I will be bald down under before my head hair goes! Too funny.
Yes, there are 2 different "T's". My onc chose Taxotere. So my cocktail is T-Taxotere; C-Carboplatin; H-Herceptin. 6 times once every 3 weeks and then continue Herceptin for a full 12 months. Then Tamoxifen.
Stats: 49; married 26 years; one daughter, 16 in May. Hadn't been in for a physical in about 5 years. Decided that since I was laid off (1st of November) that I now had the time. Found DCIS; did two biopsies, MRI, ultrasound. Extensive DCIS so single left mastectomy and sentinal node dissection. No nodes, clear margins, but OOPS - not only DCIS, but 2 small invasive tumors that happened to be ER+/PR+ and HER2+++. No family history. Healthy.
On the soy issue - my onc also said everything in moderation. Green tea is fine as is small amounts of soy. But no antioxidant add-ons. I have heard some ladies were told none at all!
Since my white blood was low (day 16), I have to watch what I eat - wash anything raw really, really well and peel it if possible; stay away from sick people; wash hands a lot. Now if I can just get rid of the tree trunk ankles. The onc nurse thinks it could be from starting a new job since I sit more and don't get as much water. She told me to get some support hose. Lovely. Gotta ramp my water intake up for next week -- round 2 on Wednesday.
Strength and courage to all of yoU!
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Frosty1 could you change my chemo. I`m on 6x Taxotere+Cytoxan and Avastin(1 year clinical trial). My next chemo 3/24 too. We have same schedule.
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Had my 1st infusion also yesterday. Thank GOD no nausea yet at all! That was the hardest part for me my last rounds of chemo last year. I take Amend for 3 days, and they give me Aloxi I.V. prior to my chemo which is Herceptin/Taxotere this time. I did A/C and Taxol/herceptin last year. For those that are suffering with Nausea please call your Onc. and get something different. DO NOT let your self suffer. Ginger also works wonders for nausea. For those that are bouncing from the steroids, which is the hardest part of chemof or me, get ativan or my preference is Xanax! Does Wonders! Sounds like everyone is hanging in there and doing ok so far. For me personally day #4 post treatment was when I always hit the wall last time I did chemo, cause that's when the steroids wore off. That was the day when I just resorted to my bedroom, took it easy and watched lifetime movies all day. LOL I hope everyone does great on their chemo. Remember to stay hydrated and eat when you can what you can. And do NOT forget to take Miralax if you're bowels are not going regularly. I take it everyday faithfully, there's nothing worse than letting yourself get bound up. Talk about making you sick and cranky. hang in there, it will all be done before you even realize it started. I just completed 15 months of chemo last June and I'm ready to kick it's butt again!
Suzanne E.
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My stats: 37 y.o., married 12 years; two kids-9 y.o. boy and 16 months girl. Few days before New Year found a lump in a shower. I thought it was a milk dust, I was nursing my girl. After mammo and biopsy got dx BC. Had Lumpectomy 1/27. Im BRCA1+ with strong family history of BC (my Mom amd my grandma, my mom`s mom).
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StaciT: great idea to share our stories.
Here's mine: found my lump during a self-exam. It was directly under a scar from previous lumpectomy (that one was benign) . My gyno. sent me for an early mammo. Mammo was clean, did a sono...several needle biopsies...the reports read "appears benign", told to follow up in 6 months. Luckily, my gyno. insisted that I not wait 6 months and told me to get it out. Lo and behold, no, not scar tissue but ILC. Margins not clear after lumpectomy. Come to find out, despite zero family history, I am BRCA 1+. Next, the double mastectomy (w/recon) and the oopherectomy. Now doing TC to be followed by Arimidex.
I'm 43 years old, married 19 years, have two daughters, 1 dog, 1 fish : )
Sorry we are all here. But hell, here we are. Pleased to be in the company of the strong and the brave.
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Hi all, so it's happening now- I've had the epirubicin , then fluorouracil, and the cyclophosphamide is going thru as I type. I've been sucking on icy poles, and ice chips the whole time. I'm drinking so much water that I'm peeing every hour, and my 1st wee after the epirubicin went through was pink - so quick. A slightly funny taste maybe is the only effect so far. Have had emend, dexamethasone, zofran, and maxalon IV as premeds.
There seems to be so many of us starting today, good luck to everyone. Alison34 I hope your nausea has settled down now, and you've found something that works for you, if not, call for more, there's always another drug to try -make sure you are well hydrated with all that vomitting.
I too have stocked up on green tea this, green tea that, white tea, and ginger tea. I'll have to ask my onc about whether she has any problems with those -otherwise, I hope I kept my receipts
My thoughts are with you all, I'm a long way away from most of you, but feel connected through this forum. Aren't we lucky to have access to modern technology for our minds and information, and modern medicine to fight this bastard thing.
Lisa
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