February 2012 Chemo
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faithhopenluv - lol @ your eyebrow hairs!!! why is hair so frustrating!?! how exciting to have new hairs coming in on your head though. I keep rubbing my stubbly head, I'm probably going to rub myself permanently bald.
dltnhm - I give you props for participating in a trial study. I can't imagine they would let you do anything to compromise your own health. Are you taking the tamoxifen now during chemo? I cannot imagine handling both at once, the chemo has given me all sorts of crazy hot flashes, no periods, low libido... not fun. I'm not looking forward to taking tamoxifen but if it saves our lives it is absolutely worth it. Sorry you are down...this stuff sucks, plain and simple. It just does not end... I guess it does eventually, my mom has been through it and I think she is done with the tamoxifen this year. I'm rambling...hardly any sleep for two days now...
Hildy, thanks for posting about your first radiation appointment. I am nervously looking forward to that too.
dipad - hoping your last treatment went smoothly today.
moonflower - so happy your last treatment is Thursday! You have been through so much, I am so glad you are almost to the end, of the chemo part anyway.
My stomach has been killing me for two days now. The carafate + protonix that has worked so well in the past is not doing it for me at all this time around. I have hardly slept the last two nights. I had to call in sick at work today, which I absolutely hate to do. My energy levels are definitely going up (despite a lack of sleep!) so I am definitely moving past this final chemo...if only my stomach would quit hurting! I filled my birdfeeders and am enjoying watching the birds, anyway. Been doing more internet shopping than I can afford, too... I think shopping expenses incurred from sitting at home sick from chemo should count as medically related and therefore tax deductible, don't you?
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My hair has made almost no progress from my last chemo a month ago, which is pissing me off. I had a short amount of stubble then, and that's what I still have. The RO nurse assures me that this is very common, but I nonetheless have visions of being one of the few who get permanent alopecia from this whole treatment circus. Growl.
edit: Christina, you are brilliant--internet shopping most definitely should count as a medical expense! I figured out that I''m going to spend abouot $100.00 in parking just for the radiation part of this treatment. I bet I'll spend at least $350.00 in parking all told. Which is, of course, ridiculous.
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Hair....no big deal, right.....
So I havent complained about my (no) hair because in this crowd I really cant complain. Afterall, its somewhat fashionable for men to be bald, right? But I have to tell you what happened this morning. I went to a meeting. Its a medical committee that I have served on for years, consulting for an insurance company. They were expecting a new doctor to be in attendance, and one of the administrators began by introducing me as the new doctor. I reintroduced myself to her (we have known each other for years), and I explained that it was quite ok.....my looks have certainly changed with my 'chemo doo'. She was pretty embarrassed, and I tried to smooth it over, while many were chuckling.
So....little has changed.....I wonder if my (away at college) kids can still recognize me???
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Hildy - with the lvi and positive nodes I am also slated for radiation after my chemo. It's mainly due to the number of positive nodes. Yes even after mastectomy they like to throw everything but the kitchen sink at it. Thanks for sharing your experience with your first rad treatment.
Christina - No, I'm not on Tamoxifen yet - after chemo. I just know it's in the queue along with radiation. And after the radiation ... and a break, we'll take a look at the girls and decide what tweaking needs to be done, if any, to my DIEP breast and if I want anything done to my right breast.
It's not that the trial puts me in danger so to speak ... but the purpose of the trial is to determine if giving Herceptin to low Her2+ (which are called Her2- on the standard test) will improve longevity and prevent recurrence. It seems that when they were doing a study involving Her2+ patients, when they did some additional testing they found that there were a group of patients who were classified Her2+ (HIGH) and were actually Her2+ low (a 1 or 2) and those patients who were low appeared to have benefitted from receiving the Herceptin. So this study is actually a controlled study and one of the reasons they are doing it is to determine if a Her2+ (LOW) person, like myself, would benefit from Herceptin the way they know Her2+ (HIGH) patients too. But because I am in the control group ... I am not receiving the Herceptin. And 5 - 10 years down the road if they see that giving the Herceptin at this time was of great benefit ... it will mean that those who got it, saw a benefit and those who didn't ... most likely didn't. And since I'm in the control group .... the not getting it group ... Well, you can probably get the picture. The treatment that I'm receiving is the treatment that I would be receiving if I wasn't in the study and I will be followed up for 10 years. Just lately wishing the luck of the draw would have swung the other way if it is in fact going to make a difference. KWIM? Just having a little mortality wakeup call lately. And wondering. I'm telling you guys I need to stay away from some of the other threads on here.
Firstcall .... I can just picture you reintroducing yourself to someone who has known you that long. And it's not just a woman thing ;-) It puts you explainin' like the rest of us - often when we'd rather not. I could use a running pep talk from time to time. This morning I got into my running clothes except for the shoes and ... that's as far as I got. Here I sit ... no miles behind me. No excuses but this low down feeling. I keep hanging on to the Hand that holds me, but right now it's really difficult.
Texted Susan .. but haven't heard back. Keep her in your prayers.
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OMG Hildy, $350 in parking! Good grief! They should have some sort of free or discounted parking for radiation patients, since you have to go so frequently. That's crazy! I am sure you do not have permanent alopecia, don't even say that!!! I wonder how long it takes to have hair. I am hoping for enough to make a normal, short hairdo by Christmas. I have no idea if that is realistic or not though.
Firstcall I can't believe they did not recognize you! Wow! Did you have very distinctive hair before chemo? I'm sorry you feel like you can't complain here. I know hair loss is hard for men too. My brother starting balding at age 16 and it went fast. It was really hard for him (although he rocks a bald look now). You've been done with chemo for a few weeks now, right? Do you have any regrowth yet?
dltnhm, can't blame you for feeling that way. You phrased it very nicely, a "little mortality wakeup call." Those are not pleasant. I guess it is reality, but denial is much nicer. I have been wondering today, how long does it take after treatment and no reoccurance and no new dx to feel "safe?" A year? Two? Ten? I don't know.
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firstcall
I can only imagine how embarassed the administrator must have been, poor dear. Ah the hair thing. Its true alot of men are shaving their heads these days and looking quite good I might add, it's still strange for anyone that has lost there hair whether a man or woman due to chemo. Why, because we had no choice.
dlt
I've already started Tamoxifen in conjunction with Herceptin and happy to report no weird SE's at this point with the exception of the odd night sweat. I'm hoping it stays that way but for now I'm not stressing about it.
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Hi everyone, it's been a long time since I've been on. My 5th round of chemo really knocked me out for about 11 days, total muscle fatigue and stomach hurt for several days,don't know what that was. My last chemo is tomorrow, I'm a little scared for after since number 5th sucked but also excited to be done. Suppose to get 1 month off and then 6 weeks rads, been on the rads thread trying to find out what thats all about since I seem to get my best info from you all. Sorry to hear so many having such hard times and can only pray it gets better for everyone. I'm wearing my "Cancer Can RotInHell" shirt tomorrow, had it made for a team race so I figured this would be a nice time to wear it again.
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dltnhm...here's a hug...sounds like you need it!some days we seem to need them more.....
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Congrats moonflwr912 on your last chemo this week. Did you decide yet on silicone or saline for implant? I met with my mo today and we asked her how often they check blood levels, I guess for tumor markers. She said every 3 months in the beginning. I've heard that some patients get checked monthly. Has anyone had this discussion with their MO?
dltnhm- sorry to hear your down. There are days that it is hard to stay positive, but try. You are strong and doing all the right things. My mo keeps telling me to stop reasing on the internet because there is so much conflicting stories on every topic. But I'm one of those people who like to do research. I heard alot about herceptin on low positive Her2 has good benifits. I was actually going to bring that up with the mo today and forgot. Cant believe you ran over 5 miles! your a tough cookie!
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I am supposed to start chemo Thursday, June 7. The ONLY reason I am doing chemo is to get the herceptin I need. My onc said i would start with Adriamycin and Cytoxan but I just got an authorization in the mail (from some doctor I have never seen by the way) with a bunch of stuff listed including steroids. What's that about? Now I am freaking out. The list doesn't even include herceptin. I thought that would start right away. Now, once again, I feel like I've been duped or something. I was happy and not very worried till I opened this stupid thing. WHERE'S MY HERCEPTIN?????
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dipad, Moonflwr, jag- Grats to all of you for finishing chemo this week!
dltnhm- hugs! you can do this! you are so strong!
I have been on an emotional roller coaster. Some days going strong and other days scared to death of the near future, surgery, rads. lol who would have thought by surpressing my hormones I would be so emotional!
Has anyone had any issues with swelling since finishing chemo? My ankles have swollen up like when I was pregnant which I KNOW isnt a possibility right now lol.
Time to go watch me some Chef Ramsey!
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Hey Jen, I am watching Ramsey too, LOL. I wanted to say my feet were so swollen yesterday for no reason I could see, I could not zip up my shoe. Nothing else was swollen. I just thought it was weird, today they are much better.
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Wow 3 more finished this week! So amazing how far we've all come even if there are TX's ahead since gritgirl started this thread in February.
Blythers
I would get on the phone immediatley to my MO and ask for clarification of why Herceptin isn't listed . The steroids are given either orally before, during and after treatment to prevent a reaction. I like alot of others here had to take them the day before, the day of, and the day after. Some get them during infusion time. While it sucks to be wired from them they do help with nausea as well.
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Blythers - I could be wrong, but my understanding is that herceptin comes after you've finished your regular course of chemo (AC). The steroids are some of the things they give you to counteract some of the side effects. Trust me, you will need them and be very happy that you got them ahead of time. Hopefully you're also getting Emend, which is another anti-nausea drug. Just make sure your doctor goes over what to take when. I also strongly suggested swigging a tablespoon of olive oil once or twice a day - a friend of mine who's had cancer twice suggested it to protect your taste buds, and I did it and while I did lose my taste a few days here and there, it held out for the most part and came back very quickly. Good luck!
I hope everyone's doing well. I completely dropped out of this thread as chemo wore on.... finished March 29 and I'm having my exchange on Thursday. The hair does come back - mine is about the length of a an army recruit. Not quite enough to go out in public, but getting there.
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Jag:
Can I order one of those t-shirts from you. I need a "Cancer Can Rot in Hell" t-shirt. It's been a bad week with a false alarm and now I'm just left feeling pissed. I love my oncologist but she is very, very cautious. Any good news she gives me is followed by a bad news chaser. This last time I saw her she remarked that the slight up (6 points) in my tumor marker might mean that the chemo isn't working anymore, that she wanted to tell me so I didn't get side swiped. Frankly, that 6 points is more likely nothing at all, but she's always gotta be cautious. I really could use a little straight up good news. Tired of chemo. Tired of always wondering what's next. Just tired of it all.
This sucks.
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gritgirl
It does suck big time, no wonder you're tired of it all. At this point does she mention any benefit to changing chemo regimes or any other TX that might zap the offending little buggers?
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She says we'll scan on June 18 and then I'll see her on June 25. She'll also take more tumor marker readings. Frankly, every time I go in to see the oncologist, I feel overwhelmed so forget to ask her to take a more positive bent. I mean for cripes sake, everything has gone down by 80% to 90%. Can we focus on that? Can she say something positive? She's just so cautious. And she's swamped. So she sees me and off I go. I actually am afraid to ask her more questions because the answers will come out with that cautious thing. At this point, I don't even want to think about it and I don't want to know. I'm angrily past the point of caring. This has been a huge pain in the ass and soul.
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Gritgirl - have you considered another mo? My tumor markers elevated and my mo said it could be due to many things (including dead cancer cells being flushed into the blood stream, or imflamation, etc). She retested and even tho it started going down she ordered a scan. She's a good balance for me.
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Grit girl I just got this shirt at Bahama mamas at the mall and put cancer can... On the front and RotInHell on the back. I actually got them for a walk that my cousin and I did and figured today would be a good day to wear it.
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What's an MO?
Also, is there a list of all the acronyms you all are using. I would add my treatment plan to my profile of I could figure out the abbrevs. (how was that...abbrevs. hahahaha).
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Hi Gritgirl
My onc told me that my inflammatory markers were up a bit according to the blood test before my chemo but that he wasn't worried because it could just be due to an infection or cold.
I was feeling a bit under the weather at the time, so I guess that was it!
Hope it's the same or something similar for you.
Alice
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Hi Blythers
Don't panic! It could be that you will receive Herceptin, the immunotherapy, after a few rounds of the chemo.
Like you I'm HER2+ and have just had 4 x Fluoroucil, Epirubicin and Cyclophosphamide - known as FEC - and will start 4 x Taxotere on Friday June 8 with Herceptin starting in round two of the Taxotere.
Herceptin will continue until June 2013.
The steroids are to prevent an allergic reaction or swelling.
Good luck with your treatment. I'm only a few rounds ahead of you and it is doable.
Best wishes
Alice
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Gritgirl: Grrr. Arrgh. That does suck. I think that oncologists are trained not to be positive sometimes as a bet-hedging mechanism. I hope you are getting good postiivity and support from the rest of the medical staff, Gritgirl. Are you down to 2 or 3 more infusions at this point?
Moonflwr and Jag, congrats! End of chemo!
Blythers, if you go to the "new to breast cancer" section of the board, there is a list of abbreviations:
http://community.breastcancer.org/forum/131/topic/773727
Edit: I almost drove off the road getting to rads today. I was zipping along with great alacrity trying to get to a 7:20 apptment on time (I did), when I caught a little motion out of the corner of my right eye. Lo and behold, a spider had belayed itself down from the car ceiling and was companionably swaying back and forth on the end of its silk. What would you do? Probably what I did, which was to jerk the wheel to the left to get away from the critter. Car caromed to the left (thank goodness there was nobody in the left lane), and the silk went into a deep pendulum swing. Spider swings into my line of vision, spider swings out. Spider is startled and is frantically climbing his thread as fast as he can, thank god. The rest of the ride I kept sneaking looks waiting for the dude to zip down again, but thankfully no encore presentation.
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MLB - glad the tamox has been kind so far.
Jag - I hope your last chemo has gone smoothly, and will not give you too many SEs. If nothing else, at least it's done. Love the t-shirt!
dipad - I asked my onc about checking levels too. My impression is that based on current treatment status (chemo or done with chemo, etc.) and the stage of cancer, may dictate how often they check those levels. But not my area of expertise obviously. I have had mine checked twice, second time was a little higher (I was told that is normal during chemo) but that the numbers were low anyway.
Blythers - just a suggestion, but you may want to take your questions to the thread for people starting chemo in June 2012 (we all started in or near February); or start a new thread in the Chemo forum. I'm just thinking you might find greater support from people who are asking these questions right now, and also they from you. It was immensely helpful for me to go through the beginning at the same time as these folks here. Please don't feel like you are unwelcome here, I'm just thinking you'll get more feedback in those two places.
rachelvk - thanks for the hair update! It helps me have realistic expectations.
gritgirl - TALK to your onc about this! I don't think it's unreasonable to ask her to acknowledge some of the many good things. That kind of talk would depress anyone. I hate when doctors do that.
I saw my surgeon today for my lumptectomy (actually re-excision) consult. My onc and surgeon are both agreeable to my having a lumpectomy (a re-excision actually) but the surgeon said he spoke with my onc and they are really pushing for a mastectomy. I had a lumpectomy in February and the margins were not clear. Onc is more vague with me, but surgeon says my tumor was "aggressive" and I also had other pre-cancerous stuff going on ? (path report mentions some DCIS). I am terrified they are going to do the lumpectomy and not get clear margins again. But I find the thought of a mastectomy terrifying and overwhelming. Too many choices, intense surgeries and recovery. A lumpectomy is no big deal to me. And I really don't want to lose sensation in my breast. I'm only 33. I wouldn't mind a mastectomy later in life so much, but not now at my age, and while I am trying to get through my last year of grad school + work full time. But am I taking too big of a risk choosing a lumpectomy? I am sick to my stomach over this. Seriously I thought I was having really bad prolonged stomach pain from my last chemo, but I think it's stress.
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Christina
I can understand how you feel about a MX at your age but I have to say that even though I'm 49 I at first felt the same way UNTIL I saw my diagnostic image at my surgeon. In my case the DCIS was so widespread throughout the breast it only made sense to go with the MX.
With that being said I found surgery WAY easier than chemo. Also bear in mind I didn't have immediate reconstruction either, that I'm putting off until later. I really was only down for about 5 days and everything got easier and easier after that. My surgery was December 14 and I was out visiting Christmas Day and went to a small New Years Eve get together. Its short term in comparison to chemo which as we all takes forever and then recovery time from that.
Its a tough decision I know and so personal. I just wanted to give you my surgery experience.
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hildy---poor spider!!! j/k ! i don't like spiders....
grit....you MUST talk to her--anything we see anywhere says taht a positive attitude is sposed to be so helpful in our cancer battle so you sure as he*& don't need your own MO bashing any positives that could come your way....i know taht you don't want sugar coating either and i don't mean to sound pollyanna...i'm not...gosh......
christina i really think that you should think hard about what MLB had to say...i am also older but i still had a worry about margins with my own LX.....it's your body and i will definitely respect any decision you make-just think about it...
okay...for the sake of conversation...let's say that a person is worried that they might be in early stages of lymphedema....who would they speak to? their MO that they will see this week for chemo ? their surgeon? their family doc??? after reading this sites' pages about LE, a person could be very worried about the heavy feeling of pressure in their TX arm, even if they have been careful.....
wierd day at work...mixed feelings about lotsa stuff...kindof a funk but it's only temporary i'm sure!!!
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Hello everyone - haven't been on in awhile but have been able to read all the updates. It is amazing how much you all are telling my story as though I was sitting with you there. Makes me feel normal with so many of the feelings I have been having. I finished chemo 2 weeks ago and have my first radiation tomorrow. Quit my job on Monday and started a new one on Tuesday. Lots of changes to adjust to. I am reading about the estrogen inhibitors - anyone know about them? I am a little scared of the side effects as I have to start taking some type of them. I am scared of starting to gain weight. That has always been a struggle, but the chemo seemed to keep it in check over the last 5 months. Any suggestions?
So happy to hear about the graduations, the house moves, the travels, the running and all the normal things that we have in our lives. I, too, will stay on this thread for the support and knowing that others are movers and shakers and still have some down days. I know then that i am not alone. Thank you all for being here and sharing. YOU all make a difference.
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I'm getting through the night with Ativan and strawberry ice cream pops. MLB I appreciate your sharing your story. Tomorrow when I go for my herceptin, I am going to ask to see my onc, and I want us to have a serious talk. No wishy-washy stuff. I want to know exactly how much different the reoccurance rate will be if I have a lumpectomy vs. mastectomy. I feel like no one is really giving me any clear information to convince me, other than "the reoccurance rate is a little better." Not good enough for me!
gigborn - congrats on surviving chemo! Hell I gained 12 lbs on it. Not cool. Hopefully now that my energy is improving and the weather is nice, I'll get off my ever growing butt and MOVE MORE.
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Christina - such a tough decision when you really have the choice. Being BRAC2+, the decision was basically made for me and I am comfortable with the BMX path. Once you make a choice you make and commit to a plan it will ease your stress. Reconstruction options really stressed me initially, but once I made it clear in my mind that i didn't have any great options, they all sucked it became easier for me to pick the best option.
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Christina00: Thanks for the helpful hint. i don't know how these discussions work but I was wondering why no one else was new...
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