August 2010...anyone starting chemo besides me?!
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Hi Joy, prayers and best wishes for you and the baby. I'm having FEC x 3, followed by Taxotere x 3. I don't have a start date yet as i still have one drain from my BMX in July. I'm hoping to be an August start but it may be September. There are a couple of us on here doing FEC so check back and we'll be reporting in.
Calamytykel: Maybe it's a good sign that they haven't called you. When my MRI showed something suspicious,. my radiologist, who had found my initial tumor ,called me on a Saturday morning from her cell phone to let me know. So maybe no news is good news?
Regina
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Calamtykel---That is so funny. I wonder about these techs sometimes. Pliers? lol I haven't had a laugh like that all week. Thanks!
Joy--Best of luck to you and the baby. I was going to have FEC but, they ended up changing it to FAC on the day of my first chemo. I had my first tx last Friday and other than being exhausted the SE's have been minimal for me. Better than I expected.
Welcome Ginger!
Hope everyone is doing well. Have a great evening.
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Welcome Gingerbrew!
Hi sohardbnme, how are you doing?
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How do you enter diagnosis information? THx
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Click on My Home at the top of this page and then Edit Diagnosis
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Good news today. Probably not a tumor on my rib - per radiologist - so I can go ahead with the chemo ACx4, taxol x12. Never thought i'd be glad I could start chemo. Will update with a start date as soon as I know. My onc only had the first biopsy report when we first met and the first thing he said was he recommended mastectomy. I had to inform him I had already had a bilateral masectomy and gave him a copy of the post surgery pathology report.
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That is awesome news Zenith!
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Hi,
Thank you. I just got home from my first cycle. Today i got Herceptin, Carbonplatin, and Docetaxel. I also got some nauseaus medicine, tylenol and beneryl. It was a super long day. i feel ok for now, like almost normal. I got some nauseaus medicine in case if i need it later. How did you feel on the first few days?
Thanks again, please keep in touch!
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calamtykel, I think the fact that we haven't heard anything re: scans may be a good thing. Today I was in the car and the surgeons office called about port placement. Scared the crap out of me, thought they had found some (as I say) "unpleasantness". Went wiggie shopping today with my daughter. I had made up my mind to try to talk them out of the port...however, after talking to our school nurse today, who used to be an infusion nurse I think getting the port might be better over the long haul for me. I'll know more after I watch the oncology DVD tomorrow. The party is getting started. I am ready to start throwing everthing at this C. Beth
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Hi everyone,
I have my 2nd chemo this Thursday. I had a meltdown today when I got out of the shower and my hair was coming out in clumps. My sister came over and cut it like a pixie, threw some mousse in it, scrunched it and it actually looks good. I probably won't have it for more than a couple days but it worked and I went to work and actually got compliments on my new hair do. Go figure! This hair thing has really shaken me. I know it will grow back and I know it is temporary but I just haven't wrapped my head around it yet. Oh, well I know I will eventually. I wish all of you the best in whatever you are facing right now! It seems it changes daily.
Michelle
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Hi August gals!
Just met with my oncologist today for the first time and will begin chemo on Wednesday, 8/11... med onc advised we could start this quickly since I already have a port which was inserted at the same time I had my bilateral mastectomies with immediate reconstruction. As I can't remember the exact drugs at this time, I do recall it will be one TX every 3 wks for 4 rounds. Then I will begin radiation....I have not yet met with the rad onc, I do that next monday, though the med onc said rad would be daily x6 or 7 wks...ughhh....Then on to a final round of chemo weekly....for what I believe him to have said 12 fricken weeks (only he left the fricken part out... lol)! This week thurs I have an appt to do the PET scan then on friday do the CT, bone scan, and ekg... WOW....gonna have a busy week! Hope to heck I don't have too bad of SE's!! I am still off work on surgical leave....so will be kinda nice to see how the chemo is gonna affect me prior to returning to work! I am glad there is a group to come back to daily as this is what has been keeping me "positive and educated" since my diagnosis on 6/28! Good luck and hugs to all that are begining this week, last week, or next week......we WILL beat this!!
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I am with you on the hair loss thingy. I am 8 days out from my first chemo now and have an apppointment Wednesday at a stylist to fix up the wig I was given at a program out here. I may ask him to go ahead and shear me down. I already feel like I look bad and to add clumps of hair coming out feels bad. I didn't think I would care much but it turns out that I do.
Hang in there Michelle.
I am glad I could just log in and find people here. I just moved here so I don't know people. Excepting at the hospital. Haha
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Ginger - where is "here"? Where do you live now? Welcome!
Sohard - How are you feeling today? I had the best day yet - Day 8. First Herceptin only tx. Uneventful. :-) And I made it through an entire rehearsal without feeling sick or exhausted!
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Hi girls -
I had my CT Scan and Bone Scan last week, everything came back great. Met with a new oncologist on Monday, loved her and so glad I decided to go for that second opinion, I will be speaking with a radiation/oncologist tomorrow and then Friday will be the port placement and chemo will start 8-19-10, exactly 1 month from the day I found out I had BC.
I am having a really rough time, I stood in the shower last night before bed and I just sobbed. I am so scared of all the unknown things about to change in my life. I am embarassed about loosing my hair, I am sad that my 6 and 8 year old little girls will have to watch mommy go thru this. I am scared that my boyfriend of 5 years will leave me, having BC just brings out so many fears and feelings and I don't know how to handle everything.
I feel like I am still in shock over this whole BC thing, I just feel like if I try not to think about it, it will go away. I keep waiting to wake from this horrible nightmare, but it isn't happening. Reality is I am 33 years old, and I have BC. I am going to loose my hair, I am going to loose my breast and who knows what else. It just sucks.
I am so sorry to be such a downer, you all sound so condident and positive and I hope to get to that point but I am just not there yet.
I read each and everyone of your post and I am thankful to be able to come here and be a part of such a fantastic group of woman, I am praying for each and every one of you and you embark on this journey. We will all forever be bonded by this. God Bless, Tina
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Good morning ladies. I hope everyone is going to wake up to a good day!
I'm not really sure how I'm feeling today. I'm on Day 9 today, and to be honest, it's been pretty bad since Day 3. I've told you all about the mouth sores, bone pain, muscle pain, diarrhea/constipation, yada, yada. Did I mention I had a rash start several days ago? Didn't think too much about it until yesterday when it started getting worse. What was also getting worse were the muscle spams. Not just muscle pain, but spasms that could really bring me down, literally. The night before last I was walking up the stairs in my house with a plate of food in my hands. Got about halfway up and my back started to spasm. I didn't fall down the stairs, but sort of slowly down onto the step I was on. I yelled for my husband, who came and grabbed the dish out of my hand and helped me the rest of the way up the steps. It was just like my legs gave out because these spasms were making me sort of curl up. So anyway, I called the onc's office yesterday, and they said to come in. And...Voila! Shingles! They think. Maybe. They're not too sure. Could be. Maybe not, but take this anti-viral (Valtrex) and call if it doesn't get better. Who knows, it might even help your mouth sores. Okay, but what about this pain?
I only got to see the nurse practitioner, but of course she talked to my onc about it while I was there. I said, how about a muscle relaxant, like the one I was on last month when I had bronchitis? Nope, onc isn't comfortable prescribing that for me because of the psych meds I'm on (I'm bipolar), but if I wanted to call my psychiatrist I could do that... He's out of town? Oh, shoot. Okay, how about a different pain med than the one you gave me last week, because it isn't helping? How about the one my surgeon gave me after my mx? Nope, onc's not comfortable with that either because of my other meds... you know without talking to my psychiatrist. But I was on the same meds. And, oh yeah, did I mention my psychiatrist was out of town? Shrug. It'll be okay. Just try this anti-viral and call us if it gets worse.
So, okay, I appreciate the fact that my onc. wants to stay on top of all of my meds, but surely there was more she could do than that. I am not a pill seeker. Don't like pain meds. Don't like what they do to me. But I was practically falling down the stairs for Pete's sake! So I stopped at the pharmacy and got the Valtrex (the anti-viral), came home and took aforementioned pain med that I still had from the surgery, and got some relief, finally. I don't like doing that. I never want to go "behind my physician's back." I like to follow my physician's instructions. I don't take meds that were prescribed for someone else or something else. I don't recommend that anyone else do it either. I believe my physician(s) should know and approve of what I'm taking. But I didn't know what else to do. I think my onc. is super cautious about prescribing things to me because I'm on other meds that she's not as familiar with. And I get that. I even appreciate that. I just didn't know what else to do. Anybody out there have shingles before? Shingles hurt! And when the nurse practitioner looked at the inside of my mouth she actually gasped and said, "Good Lord, that's really severe!" (Hand to God, that's what she said.)
Anyway, enough complaining. The good news is, I got some relief, got some sleep, discovered that Orajel and Anbesol work in my mouth as well as or better than the Magic mouthwash and the other gel stuff they gave me last week (It's called Gelclair, BTW, and it works fairly well, just too temporarily.). So right now, my back hurts, but not as bad; the rash hurts; but my mouth feels a little better, enough that I am actually enjoying my lukewarm morning coffee with vanilla Ensure mixed in! So, I don't know, I say, "Yea for me. Things are looking up." Shingles or no shingles!
What would you all have done?
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I just have to say this. Please believe me, that I am not usually a sarcastic or bitter person. Really I'm not. It's just been a really really hard week.
But, I'm staying motivated. I'm staying positive, at least in terms of knowing I can do this. And despite the tone of my last post, I really do like and respect my treatment team. I feel lucky to have found my oncologist. I think she is wonderful. I just think she and her nurse practitioner could have handled the situation better yesterday, that's all. Oh and the other good news fro yesterday is that my counts were a little higher than they were on Fri.!
So... Gatineau: How are you doing with your first Tx? Se's okay?
Zenith: Hooray for the good news!
English Teacher: I am holding out a lot of hope for you that you'll be able to train and do the races you signed up for! And if you have to walk some, it will still probably be one of your greatest victories! (BTW, what do you have to do to qualify for Nike Women's Marathon? Is it like qualifying for Boston?)
Janice: So I couldn't quite tell from your posts, do you still plan o doing the 1/2 marathon? Which one is it?
As far as keeping up with my running, what I have decided to do, is to do the best I can to be on some sort of training program while in Tx and once Tx is done, start the real training for my next marathon. When I was diagnosed I put together "My Treatment Book." It's kind of like a scrapbook, with pictures, journal pages, stickers, affirmations, as well as medical/treatment info. It's a fun project. I recommend trying it for you creative types out there. You can put as much or as little into it as you want. Anyway, the back inside cover of mine has marathon pictures and slogans, etc. on it with a big arrow pointing out and the words "Ready, Set, Go" under it.) In the meantime, I volunteered through Network of Strength to be an aid station volunteer at this year's Chicago marathon in Oct. That will be my marathon "fix" for this year, keeping me "on course" until I can get back into the race myself!
Mmahle: You're on, what Day 5 now? How is the muscle/bone pain?
Sohard: You mentioned new side effects, but what are they? Are you doing okay?
lisaattheshore, AliceJean, Rachel, CindyRN, and JSW: How are you feeling as your Tx day approaches? I will be thinking of you and hoping that all goes well.
calamtykel: Thank you for your prayers (and those from others as well -- you are all in mine too). I guess you are still awaiting results of several tests, and I know you are struggling with a lot of anxiety. I'm very sorry. The waiting Please let us know when you know something. Out of curiosity, what tumor marker test are they doing?
Lisasinglem: You said you've been trying to be positive but that you just needed to say that cancer sucks! I don't think those two things are mutually exclusive. Cancer does suck, and I think we can know that and be honest and real about how it sucks and still have positive attitudes. And you know what, who says we have to have a positive attitude all the time? It's okay to have bad moments, even to wallow a little bit, as long as we don't let it take control of us or how we think about our lives. Cancer is a scary, grueling thing to go through, and you wouldn't be being honest with yourself or with us if you didn't allow yourself to experience the reality of that. You're still doing a fantastic job of being strong and willing-to-take-this-on woman!
Tina, I would say the same to you. You're not being a downer when you tell us about the honest, painful struggle of this disease. You are simply telling the truth. There's a big difference between being truthful and open about that and being fatalistic or pessimistic. You said that we all seem so confident and positive, and I do think that is what each of us is trying to do, and trying to help each other do, but that doesn't mean that we shouldn't talk about how painful or scary this is. Talking about what you're going through and admitting to being scared isn't the same thing as giving up or not being willing to fight and do what it takes to survive. It may be right and appropriate for us to encourage and support each other in this struggle, even gently to challenge each other a little bit in order to help each other be stronger, to be survivors, but we would do each other a huge disservice if we all put on fake smiles and pretended that everything was okay, or pretended that we aren't scared and sad. I think that real courage and real strength come not from avoiding the truth of our situations out of some self-imposed guilt that tells us we shouldn't complain, or that by being open about what makes us tremble somehow makes us weak, or that it would sound like we have a negative attitude. Instead I think real courage and strength come from the ability to face our fears openly and honestly, talking about them, admitting to ourselves and others just how deeply they run, and then, armed with that truth and with the support we gain by doing that, turning our faces toward this disease and saying," I may be afraid, but I can still fight!" Maybe it sounds overly dramatic when I say it like that, but I am a strong believer that fear does not equal weakness. And being real is not the same thing as being negative.
There's a great quote by the ancient Greek philosopher, Seneca, that, for me, makes the difference clear: "It is not because things are difficult that we do not dare. It is because we do not dare that things are difficult." In this group, and in countless other similar groups, we are daring to take on this disease, to fight, to stay alive. We may be afraid of this disease or this treatment, but that doesn't mean we are being cowardly or weak. On the contrary, it just shows how much strength we really do have because, to borrow an earlier quote, we are showing up, and fighting the good fight.
Okay. Enough pep talk. Good luck to everyone for a good, hopeful day!
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Wherria-I'm so sorry you have having so many SE's. My sister had shingles when she went through tx too. I just pray round 2 will be better for you.
I'm on day 5 today. The muscle/bone pain is better. I'm just soooooooooooo tired. I can't sit up for more than an hr or so. I guess that is better than yesterday which was 30 mins. I laid in bed almost all day yesterday but, I couldn't sleep. I guess when I go back to the onc. I will see if he can give me something to help with that. So far I haven't had anything prescribed to me. I had some Vicaden left from my port install and I took one of those when the muscle/bone pain was at its worst on Sunday.
I hope everyone has a great day and feels good.
Take care,
{{{{{Hugs}}}}
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MsTina1976, Hang in there baby. I was diagnosed about 2 weeks before you. I really went through the crying, then I was mad . Why me? This can't be happening! Now I am ready to start throwing the big guns at this C. These ladies on the bb have helped me so much. I am a newbie, but don't consider your behavior a downer in any way. (I still keep waiting for someone to tell me this has been a huge mistake). I try to think of how far BC treatment has progressed even just in the last 10 years. Believe me you will feel a little more in control once a plan is in place. While my 2 girls are older than yours, the oldest cried when I told her. We went wig shopping yesterday and she says she feels better now that we know what the plan is. I also think she was worried I was holding back facts. Beth
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Zenith: Hooray for the good news.
Tina: I don't want to state the obvious, but if your boyfriend would leave when things get rough, you are better off without him. I had been married for only 7 months when I was diagnosed and, yes, I was a little concerned with how my new husband would handle such a major shift in our lives so early in our relationship. But he's been great. I thought I had married a good man, and he has proven me right. I hope that you and he can get through this together, if that is what you want. Hang in there. We all have days where the despair envelopes us but they pass and "we live to fight another day."
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Wow, this place is really hopping! Welcome to all of the new members, I hope that we can all continue to provide each other with support and encouragement as we go through this.
Tina and any others having that "why me" feeling: I can't speak for anyone else but I would guess at some time or another all of us have had that feeling. I had it a lot when I was first diagnosed and as time has passed it hits me less frequently. But I still do get sad and angry sometimes that I am having to go through this now, at age 32, when I should be trying to get pregnant like all the rest of my friends. It is ok to have these feelings and it is ok to share those feelings with the rest of this group because we get it.
Tina, I also want to say regarding your boyfriend, that you may find that this experience brings you even closer together. This is actually my second cancer experience, I was diagnosed with thyroid cancer 6 years ago. Treatment was MUCH easier but still hearing the "cancer" diagnosis was scary. Anyway, I had only been with my boyfriend at the time for about 3 months and I too was scared that he might just take off, especially since we hadn't even been together very long. He stayed with me and is now my husband. He has told me that he felt like that experience brought us closer together.
Kitty: I hope you are doing well after your first treatment. Just FYI - Doxetaxel is just another name for Taxotere, so if you see anyone say they are on the "TCH" regimen, that is the one you are on too. I start that one on Friday. I think that is also Lisa's regimen (glad to hear you are doing better now, Lisa!) and maybe some others here are on that regimen too.
Rachel: I am also starting my chemo on Friday the 13th and I am choosing to take it as a good omen. Starting something scary on a scary day seems oddly appropriate (in my mind anyway).
Zenith: I'm glad you got good news from your scans!
Calamtykel: Hang in there, hopefully you'll get good news from your scans soon!
Wherria: I want you to know that I did not at all get the impression from your post that you are a sarcastic or bitter person. What I see is that you are having a really rough time with side effects and are feeling frustrated about not getting much help from your doctor. If I were you I would be feeling just as frustrated and would probably have been more rude about it, honestly! I tend to get pretty cranky when I am not feeling well! I get that your doctor is concerned about drug interactions but like you said, I think taking a medication that you have previously used with no problem is an ok thing to do. It sounds like you are in a lot of pain and need some relief. I'm glad to hear that you are feeling a little better today and I hope that each day this week will get better for you. And thanks for asking how I'm feeling about getting chemo started this week. I am feeling an odd sort of anticipation - I'm ready to get it started but I'm still nervous about what the side effects will be.
I hope everyone is doing well today!
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Calamtykel: That is hysterical. Keep us posted on your scans.
Ginger: Welcome. I think distractions are a good thing. It is hard to think about what is going on with us 24/7. Hopefully your new grandchild will be a nice distraction also. I am sure you'll learn a lot from the ladies in this group.
Sohardbnme: You posted you were having SE ... are you ok?
Lisa: I'm glad to hear you had a great and uneventful day. I hope for many more of those.
Tina: Don't worry about being a downer. I have those moments too. My girls are close in age to yours and I too hate to have them see this. As a child I never had to worry that my Mom could die.
Wherria: I'm so sorry. It really is not fair that you have all of these SE and then shingles possibly too. I'm amazed at how positive you've been and happy to hear that you did enjoy some morning coffee. What would I have done? Probably just cried. I don't know that I'm going to make a decision right now on the 1/2 marathon. I did pay $85 to register, so at minimum I'm going to pick up the bag of goodies.
Janice
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can I join the "NO METS" club????!! Yes, I think I CAN because my doctor called first thing this morning with the news that there are no tumor markers in the bloodwork and all 4 scans look totally clean!
This clears me for chemo which will begin Monday at 8:15 am!
So while I'm terrified, right now I'm just SO HAPPY and thankful and full of praise for all the prayers!
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Yay! Calamtykel that is wonderful news! Now you can focus on getting better and kicking BC Butt! I hope it goes well for you on Monday.
Beth-My kids felt the same way that I was holding info back from them. We have 3 20 year old girls, a 24 year old girl and 24 year old boy. We are the Brady Bunch...lol...My 3 step daughters just lost their Mom last Sept. So, my dx has been especially hard on them. It took some convincing on my part to help them understand that I wasn't go ANYWHERE! That I would always be honest with them. I think we have that under control now.
I'm trying to get my strength back today by doing a little housework after 5 days it needs it!
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Calamytykel: When my surgeon called and told me my PET scan was clear, I said "I'm the happiest girl in the world to have JUST breast cancer." He laughed and said that was the plan; they scare the crap out of us, then it doesn't seem so bad to have a tumor just in our breast. But I know how you feel. It's a great feeling to know we don't have anything additional to deal with. Praise God!0
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zenith - HIGH FIVE!
tina: I've learned something and that this whole process is a "spiral" of sorts. You'll have days when you feel great mentally and breakdown days like you had. I was like that last week. I had whole days of crying. Over everything - over breast cancer, and over nothing at all. It is HUGE and overwhelming. But you can do it - allow yourself those freak outs. In the shower it's good cause you can just sort of sob and get it over with, wash your face and get back into the fight! I spoke on sunday with an older friend who had stomach cancer about 10 years ago. She's been fine since they - she is 76 years old. She always seemed to have it altogether - totally at peace with God and His will and whatever the outcome would be. but she told me Sunday that she had a couple of days where she didn't leave her bed and just stayed there crying -- for days. I never knew that. She seemed to always have it altogether. She told me "Allow yourself that grieving time - you need that when it comes on you. You'll be blessed by it."
I thought that was sort of strange, but I think she is right. You HAVE to flip out sometimes - and tears release endorphins which will help you with the emotional pain.
wher: You do what you need to survive at this point. Nine days down - almost 10, right? And you're in the fight! And you're FINDING ways to cope! I probably would have taken the pain meds too.....no, I don't like going behind a doctor's back, but you need to do what you need to do. You're a strong person - you can do this! Re: the bloodowork. Since my breast cancer was removed, the oncologist says they can do bloodwork afterwards that will show proteins and such that growing tumors (anywhere) in the body can give off. So that's what came back clean. Of course we proceed with chemo since cells float around and could be attached to various places and need to be eradicated!
I'm hoping a better day for you today and as the week goes on! Just keep in mind that it's the medicine that's weakening you - not the disease - your BODY is strong and WILL overcome it because the medicine is NOT forever!
sohard: hoping you are doing well today!
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calamtykel: YAY! Glad you got good news from your scans and can move on to chemo - who would have ever thought we would be this excited about starting chemo?0
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calamytykel- CONGRATS to you!! That is the greatest news!! Time to get the party started and kick the heck out of the BC!!
To all the ladies starting tomorrow (like me)- good luck....I am scared like hell wouldn't have it... but anxious to get it all over - to those on friday (in case im to sick to hit the power button on the lap top) good luck to you as well!!
I'm thinking I want to have a yummy meal tonight as it doesn't sound like that is gonna be a possibity in the near future....ughhh......am already starting the water intake.....sure hope it helps!
(((((Hugs))))) and best wishes to all you wonderful STRONG ladies!!
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wherria - I just wanted to reach out and give you a virtual {{{hug}}}. I'm so sorry you are having so many se's and shingles on top of it all!?!? But, I love your posts and you give so much wise advice. I also never got the impression that you were being sarcastic or negative in your post.
calamtykel: YAY! Congratulations on the chemo start. (Never thought I would say that.)
tina - When I was first diagnosed, I was nearly convinced that it was a mistake. I kind of expected that when they went in for surgery, they wouldn't find anything because they had given me the wrong records. Unfortunately, they did find the 2cm tumor. But, I will say that there is a BIG difference between waiting for treatment to begin, and actually getting treatment. I just started my chemo last week, but I already feel like it is the "new normal."
Question: For people who are getting rads after chemo, have you met with a radiation oncologist yet? My onc said at my first visit "well, you will meet with a radiation onc, a little later." But I'm curious what other people's experiences were. My last TCH will be mid-November, and I'm wondering if it might be possible to start rads directly after that, and maybe be done with it all by New Years. Pipe dream? I think not!
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And to all the ladies starting chemo tomorrow: Good luck! Fight the good fight! Much love to all of you!!!!!!
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Lisa: My med onc said for me to meet with rad onc just to hear what they have to say. He doesn't think rads will be necessary. From what I've read, if the tumor is smallish and no or one lymph node involved, rads don't really benefit you. But every case is different. I'll try to remember to post on here what they say after I see them on Thursday.
Regina
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