August 2010...anyone starting chemo besides me?!
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Iowasue - That is good to hear, on another thread I read that 8 weeks seems to be about the time to expect improvements in joint stuff if you are so lucky to get improvement!0
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Omaz: it is the LE risk, because I will have to FLY to see some sun, that stops me from doing that!!!! Good idea, however, and I think I am going to an orchard this weekend and it should be sunny so perhaps I can get some Vit D that day!
Question all: does anyone know if we have recurrence, say 5+ years out, and all things remaining equal (meaning no significant new developments etc..), would we be eligible for chemo at that time? Does anyone know the answer? I know they don't administer for bc recurrence but I also think there must be an expiration date on that or it would appear rather draconian.
I would call the onc but I don't want to be reminded that this question has NOTHING to do with chemo, tamox ,or bc so please, don't call again!!!! Overpaid punks!!!
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Tex: Netflix drama I meant to tell you about! Apparently those jokers are getting ready to sell "Netflix" to Amazon for their streaming video capabilities and now the "Qwikster" will be the Netflix of the future. I guess Amazon wants the name "Netflix." Don't know if you heard but the CEO sent out a letter to all subs (perhaps you got it) and opening line begins something like "I am sorry, I made a mistake!" Ya think? They have been bleeding customers all summer because no one knows what the hell they are up to. I watch them from the market side of the situation as I think the preponderance of movies are far too mediocre for me to even spend money renting at all!
It is such a paradox the entire industry moves to tablets, we only have 2 eyes and now everything is going streaming so now the preponderance of people are watching movies on minute screens! I tell you the "pad" folks are secretly investing in seeing eye dog farms as they cultivate future customers!
One more thing on this movie business: on my way back for NYC last weekend this girl started talking to my friend and I. She was traveling from Fordham U. She lived in Fairfield but was going to Bridgeport (a well known "s" hole in CT!) because her mom had recently opened up a dinner type of theater there. It sounded really cool mainly because she serves wine and the film du jour that night? ANIMAL HOUSE! Now, I could easily dine and watch a classic but I am still uncertain about going into Bridgeport to do so.....!!!
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Lizzy - I got the letter but didn't know Amazon was involved. So Amazon will take over the streaming part?0
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Good news sue!
lizzy i am not really sure, i know that if i have a reacurrence they will just try a new chemo on me, and i have heard of some people getting the same chemo tht has worked well in the past again if they havent had the full cycles- i think lol dont quote me on this.
Who told you they dont readmister for reoccurance? you're right it sounds draconion- once you've used up that option its no longer available...
Netflix- yup i did get that email LOL i thought it was a little CYA and didnt pay much attention to the apology i just cancelled the account! What the letter said is that on line streaming would still be called netflix and via the mail would be quikster... i dont care what they call it i was tired of every month the rates going up!
we have a theater like that here called Alamo Drafthouse- it plays new relases and you watch in comforatble chairs with tables and eat a full meal! I havent been because they have a policy no kids under 7 and mine are 6 and 3 lol- my brother in law went like every weekend cuz it was a good atmosphere
okay riddle me this- get my mri done today and they couldnt get a vein for the contrast so the guy says "i am just going to go ahead and skip the contrast because i can see whats the problem on the mri w/o contrast and there is no need to keep sticking you to find a vein" Then he sends me home! WTH- why couldnt he just tell me what the heck he saw instead of leave me hanging! oh and they sent me home with a disk of pics but i have no clue what i would be lookin for so i havent bothered to open it LOL
that should be a crime- telling me just enough that i am worried but not the whole thing!
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I am 7 weeks post herceptin. I think my joints already have improved still have some aches and pains.
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Omaz and Texas: I saw the CEO in an interview and he refused to deny the impending Amazon takeover. The trading of the stock tells a story as well. Apparently, and the way I see it, Amazon is buying them for their BRAND as well as their video streaming capabilities. Netflix, however good they are at streaming, was founded on the mail-order dvd business as you both know. Because they "have to," as part of the deal, sell the "Netflix" name, in an attempt to divide the businesses now and send a clear message to their Netflix mail-order business, which they will continue to operate, they needed to give it a new name so as to not confuse the customer later. His "apology" was basically 'sorry about the way we rolled this out.' Qwikster, the mail order business, will remain a seperate entity and will operate just as Netflix did in it's origin sans the newer, streaming operation. Amazon wants the name and that streaming op!
texas: I remember, and quite clearly, being told if "it" comes back, there is nothing they can do and they don't give the same chemo twice, especially if it returns. My feeling is if that chemo, say, worked well enough for like 5 years, why wouldn't they try it again or a different one? I walked away from that first meeting with the onc basically with the idea this was my "one shot" and if this did not take, and upon recurrence, they would not treat me at all with chemo and I would just die of bc. That was my take-away.
Tex, that was also a very good point about how research on other cancers leads to developments for bc. For the record, btw, a 3 mile walk on a wicked hot day is more than sufficient exercise!
Ckptry: been meaning to follow up on the comment about hoping your daughter has better options. That tugs at my heart strings. I think it is, I mean clearly intrinsic, but also just lovely that you think about bc and strides we can make today so she will have more options forbid she ever needs them.
I think i told you all about my friend's mom in the 70s where they ignored her so long and by the time they cut, which was a bmx and you were shoved out the door with some "falsies" to work with, it was way too late and she died within months. In any event, we have come a long way so perhaps the "pink" stuff, in hopes it is not a front to raise money and not give it to the cause, is actually working to benefit us in some, albeit small, way.
Night, girls and may the FORCE BE WITH YOU ALL!
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Lizzy- thats weird because if you go onto the stage 4 boards you will see that there are plenty of women who have gone from 1 chemo to another until that new one quits working and then they try something new...
I do know that my oncologist had told me that if i have progression it is assumed that those particular cells were "resistant" to the treatment that i had already had so thats why they would look at other options. But to try nothing seems absurd!
But why are we even talkin about this! in 50 years you'll be like "i was worried over this because..."
Sue were you given anything meds wise to help with the joints?
Night everyone!
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Lizzy - my onc told me the opposite. I remember talking to her about stage IV, and she said "I will tell you this - if you present with Stage IV, it's not like we send you home to die. Stage IV can be treated-- not cured but it can be treated."
She also told me back when I had that awful lump on my neck that they would probably hit me w/ more chemo if it came back cancer.
I was a wreck....If you have had AC, they cannot give you the A part again because of heart damage but they can give you other chemos.
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Lizzy - My understanding is that if it comes back they return to the arsenal and pull out another weapon. Lots to fight with left in there. They just don't use the same ones usually.0
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Good day, warriors!
I hope you all are doing well.
Cal, Tex and Omaz: thanks for your responses. If we put mental "post-its" on our brain, that was an old one I just found! I just remember him saying "if it comes back, there is nothing we can do." I don't know, as I can't remember what I did yesterday (thanks chemo!), the exact context but I know it was in the initial meeting. I was such a neophyte on all things chemo, he could have said that in regards to something else. I just took it as they will never chemo bc twice and you are basically SOL should it return.
Tex: I have never been to the stage IV boards and not as a function of avoidance. You are correct, it could be 50 years from now and I will be thinking "why was I even talking about that!" More to this point, however, it was just one of those lurking questions and I seem to remember some older women in chemo who were there getting chemo for distant recurrence. My memory of my initial meeting with the onc and subsequent stories did not match up.
Cal: after the Kennedy woman died at 51 while working out in LA after having had chemo for bc several years prior, I am nervous and would never want the "A" again. I also realized that working out is great but until I feel, over the course of a number of years, that I have rehabilitated the muscle we call a heart, I will not do any extreme workouts. She was not doing an extreme workout but it was a reminder to me that working out is one thing but pushing myself (something I enjoy) is not really the most practical approach right now. I will save my "pushing" for weight lifting!
How are you feeling now? Even though you are most likely better, several days of dysentery-like biological conditions must have left you doing clean-up in the form of ramping up nutrition and intake now. Just wondering how you are doing with that and don't pull a "Liz" and not get some electrolytes back in you!
Finally momma nature has brought an autumnal treat to my corner of the hemisphere! I am going to enjoy this today!
Good day, warriors-
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Do you get heart tests Lizzy? So far mine have been good- they even hooked me up to a stress test machine where i had to jog/run on this treadmill...
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oh kel i wanted to ask you- what should i ask my nutritionist? i see her on friday
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Lizzy: I've never heard that "nothing can be done." Like others said, it's my understanding that they treat you with another drug, i.e., they don't do adriamycin again, but maybe try taxotere if you haven't had it. That's one reason there was such an uproar recently over Avastin. It's used regularly for ovarian cancer, and has been used to treat stage 4 BCs that hadn't responded to other drugs. Then the FDA stuck their nose in it and said they no longer "approve" Avastin for BC, despite tons of women testifying that it had saved their lives!
Carolyn: It's hard not to worry about the kids, but I try to remember that I ate dirt and bugs, and went all day without washing my hands when I was a kid, and I made it! Sometimes the more information we have, the more worry; and then there will be a new study in a couple of years saying that the old study was wrong.
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Just to chime in my two cents.....I have met a couple of people who have gone through a couple of chemos due to breast cancer. They seem to dig other drugs out that you may not have had already. When I took my MIL for her chemo about a month ago, she was sitting beside someone doing chemo for breast cancer and she was also on a trial for that Avastin...this was at PMH in Toronto. I'm guessing that it is still accessible here in Canada? Anyway, the lady was on her second go around. I am guessing the chemo would change up especially if the cancer spreads---seems different chemo drugs for all different cancers.
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Lady Thanks, I've decided I'm just going to pick a source I trust and tune evrything else out so I don't get overhwlmed with info.
Lizzy Lots they can offer for Stage 4, chemos and hormonal txs. Also, not all recurrences are to Stage 4. I think it might be time to go onc shopping.
night all!
Carolyn
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tex - Any word yet from your MRI?0
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Not yet- thanks for asking Omaz, funny because as soon as i got let out of class yesterday (2) i called my onco and his nurse said that the mri placed called them and let them know they were faxing it- thing is that my onco is out of the office in the afternoons to go to the hospital and see his patients there, so the soonest i would hear from him would be this morning, but then i have an appointment with them tomorrow so i am not sure if he wants to wait til he sees me to go over the results...
Anyway i had a wicked dream of course about my results- they had to stick this tube through my neck to my shoulder, lol weird!
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Good morning, Ladies!
The Chicago Marathon is a little more than a week away. I don't mean to feel sorry for myself, I really don't, but Last year, before I was diagnosed I was training to run the 2010 Chicago. Then cancer things got moving, and despite my best efforts to keep running, I just wasn't able to. So during treatment, I told myself, vehemently I might add, that next year chemo would be over, and I would be able to get back to my training, and I would run in the 2011. Nobody told me then, that I would continue to fee like roadkill for another year or two. Nobody told me, I was going to gain a hundred pounds (okay, an overstatement, but it feels that way). And nobody mentioned that my muscles would not only atrophy from lack of use, but that the enzymes would actually be broken down and replaced with fat cells leaving my body weaker, ys, but also in an entirely different shape. Anyway, here I am, now, maybe able to run two miles. Am I sad about this? Yes. Disappointed? Angry and frustrated with myself for not pushing myself more and trying harder? Yes.
However, I am not resigned. I have continued to have many health problems since my diagnosis last year, some cancer-related, some not, and so I have had to keep telling myself, whether I believe it or not, that I have done the best I could with what I had. And above all, I need to resist the temptation to look back, and focus on the now and look to the future. I WILL RUN RUN THE CHICAGO MARATHON IN 2013!
But that's not my only goal. I want to pick a 10k or half marathon to run maybe in April or May. I'm trying to get my sister to run with me. She lives in TX and I am, of course, in Chicago, but I've asked her to start training so we can run a race together sometime in the spring. She used to run and enjoyed it a lot, but had a meniscus injury that has left her unable to do a lot of exercise, except swimming and lifting. But, I told her that if there is a way, if there is a sugeon, if there is a treatment that will help her rund again, then I will find it! I have a pretty good grasp of medicine for a lay person, and I have had so many illnesses over the years that I have become an expert at navigating our healthcare system. So I will do my best to keep that promise. Wish me luck!!
Lizzy, how's the rash? Yesterday or the day before (I can't remember which) you said the med for the itching was working, but that the rash wasn't really improving. Still true, or are you seeing some of it shrinking?
Tex, I will be thinking of you and praying for you, that you get good news tomorrow.
Cal, are you feeling better? Recovered?
Is anyone else out there running, or, as in my case, trying to run?
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Wher - I never gave up running on chemo - except that I did a lot less of it! Running that week was impossible - but then I would run the following week as much as I could.
I continued to run through the winter and spring - and summer - but then these three things happened - I got another tick bite and got lyme again, which led to me pulling a shoulder and neck muscle and then I got this awful stomach flu. Those three things have really really slowed me down. I went out last night but I did more walking than running - I can really feel the drag on my body since I'm getting out of shape now.
I would suggest just starting slow and doing what you can -- 2013 sounds like a very reasonable goal - I think you can do it!
Lizzy - I thought Kara Kennedy had chemo for lung cancer several years ago - I don't know that her heart attack was attributed to the chemo that she had - I think mostly chemo causes congestive heart failure and not an actual attack on a seemlingly healthy heart.....at least that was my impression?
I went to a cardio back last spring and he did a full workup - echo, treadmill, etc. He said at that time there was no evidence that chemo had done any damage --and he told me 'no restrictions" based on his tests. Chemo can cause damage years down the road, but I wanted an all clear for now since I wanted to get on with running, etc. and since my dad had died so suddenly of a heart attack after living a very healthy lifestyle.
Right now I'm just frustrated with being so tired - I didn't sleep well last night at all. I think i'm back into that menopause mode - my periods have completely stopped (for which I can't say I'm sorry ) but now the hot flashes have been bad since I had that virus . They always get bad when I have lyme, and whenever my nutr. treats it, they go away so we'll see!
Meanwhile we're all so tired of the wet here. The clothes we had in piles in the bedroom for cool weather are all musty just from sitting over the summer. EVERYTHING is so damp. I heard that we only get rain like we did this year once every 1000 years! Town is flooding again from the rains last night and the basement is a mess. Just so tired of it all.
Tex -- I'm afraid I'm not much help for the nutr. since my nutritionst just calls himself that, but really he's much more of a Chinese herbalist, naturoapth, chiropractor, etc. etc. Even though he's effectively treated and cured many of our diseases (lyme, infections, etc) legally he cannot claim to do that using alternative medicine, so he just says he's a "clinical nutritionist".
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Good day, warriors!
I hope everyone is well
I was MIA last night as there has hardly been a more memorable evening in MLB!!!!!!! It was unbelievable. I am sorry to say I have 7 televisions in my house (yes, I live alone!) and I had 4 on with games and ESPN going...and, yes, a few pic-in-pic! It is so sad! Last night was bananas and I was doing laps around my house from tv to tv!
Tex: I got my heart tested right after chemo and it was fine although during survivorship clinic I was told that the heart damage from adriamyacin will undoubtedly show up years down the road. Another little bit of information I will never forget! I am really glad your heart tests were good. Now if only we get some good results from that MRI
Keep us posted on that, Tex.Lady: I am not as well-informed on the Avastin situation as I should be. I am going to bring myself up to speed on that today.
As for the onc, I don't know what he meant. I mean aside from the fact they push us out of the onc nest a bit too early, forcing us to deal with our new post-chemo/bc existence with little to no support, I don't take anything away from him professionally. I think he is very bright and unfortunately, as I said, my memory sucks now worse than before so although I remember the comment, the context could have been germane. I don't know but I will see him in October and ask. There is a very good chance he won't remember what was said or why he might have said that. It is just something I am not forgetting. Perhaps he meant if it comes *right* back? That is why I thought I would ask you all.
Ckptry: in the event that I heard anyone here speak highly of their onc, I might go shopping, but no one has a lot of good to say so, as my grandmother would say, go with the devil you know!!!!!!
Tex: on that dream, that is awful! I had a biopsy of my thyroid and the needle was like 10" long! They went in through the side of my neck! You know, it is funny now that I mention that thyroid biopsy because that was in 2005, and at my request, and it just so happens the surgeon that found my bc told me it started around 05 from what they could tell. I wonder if I sensed something? Who would have thunk it was my knockers!?!?!?
Wherria: life, in it's totality, if it were charted, looks like that of a healthy heart monitor. There are peaks and valleys. Of course it is our tendency to hold ourselves to the best we ever were (be it in shape, professionally etc...) and secretly castigate ourselves for not being able to maintain that. If, however, it was meant to be maintained, our monitors would flat line and that just is not life, woman!!! The lows help us remember the highs and vice versa. You will run in 2013 provided you are healthy enough to do it. It is a goal and goals are what keep us alive, keep us living and keep us striving to do more. A life without goals is a barren existence. It seems you are very goal-oriented so isn't it fitting that you have another challenge ahead of you? I think high-achievers are dished out, and dish themselves, new challenges regularly to keep life interesting!
In fact, I think, as Adey just finished a cleanse and is rearing (no pun!) to go, I will sponsor her to train with you for this marathon!!!! Get your Franken shoes out, Adey!
As for the rash, it is just stagnant. All I know is this crap needs to be gone before pre-op. Thanks for asking.
I think Rachel is a runner but is spinning now to build endurance and give her joints a break. I used to run but I fall easily into bigger/better/faster/more instead of just being able to run a few miles a day. I might revisit running in late winter/early spring after the drains are out and surgery is done. Not sure yet as it is so not good for my aching joints! Speaking of running, I am so very happy I won't have implants as I have heard more than 1 story of them *shifting* while running etc...
I hope everyone has a good day. I cannot wait for FRIDAY NIGHT BASEBALL! I also hate to say it, and I know it seems I am the only baseball fan here, but I can't help but think the Yankees waited for the Sox to lose last night and then let the D Rays win! It is awfully funny that minutes after it was announced the Sox lost Proctor tossed a grapefruit!
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Calamtykel: you are absolutely right, it was lung cancer. I don't know what kind she had but they say the closer to the heart the organs being treated, the more likely the heart can be adversely affected. It is not just adriamyacin that causes heart problems, however. I don't know what kind of heart problems chemotherapy can cause. You are probably right with the congestive heart failure issue but it would seem that the caliber of poison chemo, across the board, is that it might have different heart-related effects on different people.
In any case, at 51 and with her father having passed from a brain tumor, it is just a shame. Surely we will never know if her heart was debilitated from chemo or if it was completely unrelated and she just had a heart attack.
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Wherria...I was running prior to chemo. Probably doing about 5km 3 times per week. Didn't have the endurance for any marathon or anything like that. However, chemo hit and I really didn't feel like doing anything. Throughout my treatment, I didn't do anything---really truly NO exercise. Not good but I was having a hard time especially emotionally after my 2nd diagnosis. No excuses!! I gained a lot of weight through chemo--Doc thinks combo of bad reaction to the drugs and also, laziness. Anyway, when I went to start running again after radiation--I was so out of shape it wasn't funny. My joints were killing. I started walking...but honestly my cardio was horrible. I started spin classes about a month ago and am enjoying that. I am also disappointed with what has happened re; exercise levels over the past year---I look in the mirror and am a little disappointed but then remember that I got through this past year and am alive
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I wore my Franken shoes out so there! (c: I would be willing to try for a 5K as that is a goal of mine. Marathon....... no way! BTW, 7 freakin' TVs! You crazy. (c:
Wherria- The Illinois gals are getting together Friday night and you can have a ride if you need one and are so inclined.
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Lizzy - I wonder if she had rads to the lungs - probably so if it was fairly aggressive, which i think it was. I wonder if lung cancer rads can cause issues.
I just got in from walking and running three miles - I took my girls all the way down to a dead end street on their bikes - they can only go if I go since our hill is dangerous with the cars. But now I'm beat!! My legs feel like they're on fire. I underestimated I guess how out of shape I got these past two weeks!
So implants can get messed up by exercise??! I didn't know that. I didn't have any reconstruction - I would have been worrying now if I had!The heart damage is scary --ANY kind of "years down the road" chemo is scary, isn't it. I try not to think about it - but it does creep up occasionally. That is one reason I want to keep my heart as healthy as I can especially given what happened to my dad in February.
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Lizzy: That is so funny....the DJs on the radio were saying the same thing this morning....HMMM wonder if they threw that game? I hope your rash is better.
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Hey Debbi - How are you doin?0
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Calamtykel: Kel, it i s scary. I can't imagine that I won't be able to bungie jump etc... because I have to worry about chemo damage now. I used to like to blade Central Park in extreme heat for several miles in the dead of summer but now I have to be aware, going forward when I feel back in really good shape, that I should not be pushing myself and that sucks. I like to push. I hope that my heart gets strong again through working out. BTW, I too have just gotten a little lazy lately. I know for you it was health reasons but I am back on that exercise wagon now as I want to go into surgery strong...very strong!
Sptmm: they THREW that game! Leave it to some cynical NY DJs to toss out that same idea! How are you doing these days? Feeling better since surgery? Did you get the results from what they cut out? Did they give you feedback on the margins? I hope you are all set now and ready to windsurf over here next summer!
Adey: I actually have six televisions hooked up and 2 sitting in the basement. Today I decided one of the basement sets is going to be given to a local nursing home....so I am really down to 7 now!!!!
Go get some more Franken shoes, woman! Run that marathon with Whitney!
Sweet dreams, girls!
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Good morning, Ladies!
I hope everyon got a good night's sleep and are waking up feeling good, or maybe just a bit better than yesterday.
Not to beat a dead horse (oh, God, what an aweful expression!), but I am pretty obsessed with the running thing. (Thanks for all the comments!) Lizzy, You're right that I tend to be a goal-oriented person. I am, however, also realist. One of the reasons I have to be goal-oriented is that with my bipolar, I can very easily, when I'm in a manic phase, take on way too many projects at one time, thinking that each one is the most important thing that's ever been done, and could possibly save the world. I'm not really even exhaggerating (sp), and then when I'm in a depressive episode I tend to get very very low, like to the point of hospitalization (about 40 times), and my plans and their possible importance completey shatter. So I feel like I must fiercely hang onto the goals that are truly important to me, or someone. Running has always meant so much to me, and it is usually as important as or more important to my mental health as my medications. Running has truly helped me grow as a person, recognize my own strengths and accomplishments, which is something I've never allowed myself. It has provided a large and varied community. Etc., etc. So, yes, I am very frustrated, and, I'll admit, angry with myself. Cal, I admire your ability and strength to keep up your running during chemo. I tried and tried, but I just couldn't breathe well enough. I kept telling myself that the more I tried to run, the better my breathing would be, but it just didn't work out that way.
But, I have at least done a few healthy things recently. I have started again without expecting too much out of myself. I am not usually good with the patience thing, can't stand it when I am told, "It's going to take time." It's kind of funny actually, and paradoxical. Usually, when people talk about pushing themselves (in this context), they mean physically, making their bodies go just a little bit past what feels comfortable or doable. For me, right now, pushing myself means forcing myself not to expect too much; forcing myself to allow my body time to regain its strength and readiness. So that's a healthy thing. So I am running again, but I'm doing the run/walk technique -- I'll run for 3 minutes, then walk for 1, then run for 3 and walk for 1, etc. Also, to satisfy my running obsession, I am doing other things, like reading running mags and blogs,etc, listening to running podcasts, looking aroung in running stores. Doing those things helps me feel like I am still part of the running community; it helps me be hopeful and optimistic about what the future will hold, God willing.
Adey, and Rachel: I like Lizzy's idea. We can encourage and support each other. In fact, Lizzy, you have led me to wonder if there would be any interest in a "BC Rnners" forum. What do y'all think. Im am starting a blog that will kind of chronical (sp?) my process of "getting my body back". There are a lot of people out there who are just beginning to run and having difficulty staying with it until it becomes enjoyable rather than just hard work, and people like me who are trying to return to running after a long layoff. So this will be for them.
BTW, as someone mentioned, there are other chemo drugs that can cause heart problems. In fact, if you read the small print, pretty much all of them have some amount of risk of heart damage. Also, it is not just congestive heart failure that can happen. There is also a high risk for cardiac aryhthmia, such as prolongated QT. Much of the time these aryhthmias don't cause harm, but if they last lond enough or are severe enough, they can lead to a condition called Torsade de Pointes, which can lead to sudden death.
One last thing, and I will release you from the wherria prose prison! Adey, which Friday are the IL girls getting together, and thanks for the invitation.
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Tonight!
There is a thread called 2011 running thread
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