August 2010...anyone starting chemo besides me?!
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Calmtykel: Kel, you have to remember how many people knowingly put poison in their bodies in the form of drugs for years and years and years and are STILL HERE today. Keith Richards, as you all know, is my favorite example! Don't forget my BIL tiis still here 14 years later. Millions of people are still here because of chemo. You workout, youut are healthy, you are active, you love life....don't worry about it. We are all going to be fine. Don't forget, bc had a plan to kill us, never mind organs. We are soooo lucky to be able to have this creepy med that kills those cells and gives us a new lease on life. HOLD ONTO THAT. Forget everything else...
Like my signature: I have been through many terrible things in my life and some of which actually happened. Don't worry about things that have not happened and, if you don't focus on them, probably never will.
Hang in there. We are all in this together.
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Master cleanse: do you all think, after having had chemo, there will ever be the need to do one of these ever, ever again?!?!??! No more high colonics!!!!!!!
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KIMMIE - I have had horrible constipation as well. I've been taking Senna and eating as much fiber as I can, but I still have the problem, and now it has turned into hemerroids, which are really painful everytime I go. OY!
re: Tomato Sauce - I have had tomato sauce several times without problem. Did they say why you're not supposed to have it? I guess it can also cause heartburn, but I haven't had too much of a heartburn problem on the Prilosec.
Well, I went back to the show tonight, and made it through. Got a little nauseous in Act II, but I wore my relief band, which seems to have helped. I only have one more treatment before the show is over, and I think if I can prevent myself getting another cold, I will be fine.
This thread is so active - I have to check like 4 times a day to keep up! :-)
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Hi,
I had my 4th AC on Monday. I took my Newlasta last night and so far don't feel any big effects in my bones. I am not taking my thrid Dex amthason tonight because I am not nauseated so I may avoid some of the hinky leg stuff that seems to keep me up.
I am taking my first of 4 Taxol in 12 days. I have to take a bunch of Dexamethason three times before it is administered. I will for sure take a bunch of the meds that will help me sleep. I don't want to imagine these steroids having any greater effect on me.
I go for my first pt appointment next week, I never got any instruction relating to the 20 lymph nodes that were removed in surgery. It seems it got lost in the transition between surgery in Illinois and treatment in Seattle. I don't know much about it but I am going to go and see what it is about. Had anyone else had any instruction about this arm swelling?
Girlroom..I call it my sewing room and if I can get it unpacked it is really cool. I have all the toys I can use, and hope to use them again and some for the first time. I wanted to learn to paint and bought the things I would need but never got started before we were packing up to go to the BS and then Surgery and then to move 2000 miles away and then get chemo and never get fully unpacked. I want my sewing room back in my life. It has so many things in there that make me so happy. I don't know why I can't seem to motivate myself to walk up the stairs and get into what I love. I am sort of comatose on the couch most of the time.
I did put my Cinderella collection into a first floor curio so I am happy to see it every day.
Texas: I hope you are finding your peace.
Tomato sauce is acidic and if you have mouth sores or a have that burnt feeling on your tongue than I would avoid it. If you don't I can't see why you would. I was eating ravioli with pesto to avoid any issues but am ready to go get myself some good lasagna, probably from the freezer but Souffers version anyway. Pasta is such a comfort food.I was also told to go to the carbs to help firm up my runny tummy.I was also told to eat meat and potatoes. We don't eat much meat so that is difficult. I did have some great braised beef at my DD on Sunday and that was so good.
I hope you all have a good week and build your own version of a girl room in your living space.
Ginger
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Gingerbrew: Having bc is a huge, catastrophic event for anyone. It rocks you to the bone and changes your ilfe as you knew it. Add to this huge challenge a move some 2000 miles away from the place you called home to a new, unfamiliar city (with notoriously damp weather) and you have, in effect, taken away your structural foundation ie: friends, relatives, and even down to the basics like chatting with the cashier where you get your morning coffee and knowing what weather you might expect. These are comforts in life. Your bc tour also included chemo now. You are in an unfamiliar city without you existential creature comforts, still unpacking and also with your DH traveling. Even with the new baby, such a huge blessing, it is all still new to you. Perhaps setting up your sewing room might secretly sadden you because you could be lamenting your life you left behind which is a natural byproduct of change anyway. I think you have to give yourself a lot more credit for dealing with catastrophic change and life-altering circumstances all at once. Moving alone is such an event, that in and of itself zaps energy. I think you owe yourself an adjustment-without-judgement period. You will get back into your sewing room- it just takes time. You have had so much to absorb and adjust to, the inertia will pass. You are unequivocally still in transition. Give yourself love and no judgements right now.
As for dedraggled MEAT, I can't stand red meat (saw the cow video in college!) but b/c my iron was low and having to eat more protein, I decided to eat a steak. I will NEVER do that again. If you are not a regular consumer of red meat the grotesque hormones in it will shock the system. I don't hate the way red meat tastes but I despise the egregious industry surrounding and all those hormones are NOT just staying in the meat as it passes through your system. I am not a vegan or a vegetarian but even yesterday I found out one of my diet staples is under the FDA gun: salmon. Apparently lots of salmon being sold right here in the US is genetically manufactured. This means there was never a fish involved! It is worse than farming...it is a petri dish!!!!!!! The FDA is currently deciding on requiring genetic salmon manufacturers to disclose that on their labels. All I can think is great, just great! I have to get protein in so I am doing what I always have which is nuts, cottage cheese and I do eat chicken and eggs. So, in the end, they told me no red sauce and to eat tons of protein but I will go back to exactly what I did pre-chemo, until sauce makes me sick or what I am doing does not make sense, which is no red meat and I will still eat sauce!
I am on TAC x 6 with an accumulated response (lucky me!) so I am sure by the Nov/Dec stretch things like sauce might be off the menu but, for now, I will continue to enjoy my favorites!!!! I am going to eat what I normally have until my system tells me otherwise.
Good times, good stuff! Ginger, take it easy on yourself-1 year from now this will be history...or herstory as it were!
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Lisasinglem: I think you are right in that they told me no sauce b/c of the heartburn thing, which I did get a little with the first tx, and that which can be quickly remedied by a glass of cold milk and zegrid! In any case, thanks for the input.
As for the show, I am so glad you felt strong enough to return. I hate to sound like I am pointing out the obvious but chemo needs a rested body. I hope you totally baby yourself in your down time. Really, really, really take it more easy than you could ever imagine doing under any other circumstances. I told you I worked in theater in my early 20's and I know the show must go on but I also know there will be other shows and you have a very good reason to take a break if you so chose. The seriousness of the matter is no one wants to do chemo twice. Just watch out for #1 and if you feel like taking a break don't also feel like you are giving up when, in fact, you are owning up to the idea that rest is an imperative and one of the main ingredients of successfully battling bc. Just be sure you are getting all the rest you can during non-performance periods.
I wish you the best and hope that you continue to break a leg
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Lizzy - I think the red sauce might be cause of the acidity with mouth sores and heartburn like others have said. And I love my salmon, I am not sure I want to know if they are petri or not... blind is bliss? ugh. Believe it or not Salmon was the only thing that I have eaten through both rounds of chemo (taxol and AC) that still tastes the same.
Lisasinglem - I'll have to try the Senna. Havent tried that yet. And hemerroids hurt more than I want to think about. I was afraid I was gonna have to go to the ER last week. But I was gonna try everything I could think of first before having to go and tell some unknown ER doc that I cant poo. I am also hoping that with all the bleeding that I didnt mess up my counts for tomorrow's chemo.
I noticed some were having problems with hot foods, anyone having problems with cold bothering their teeth? Anything liquid from the frig is cold enough to make my teeth hurt. Another reason not to eat, unless its lukewarm, blah.
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Good, bad or indifferent to the cause, this healthcare news is very good for bc patients at large:
Speaking of which, does anyone know if there will be a cap placed on COBRA premiums? It is my understanding that currently they can just keep rising.
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I answered my own COBRA question and, in case anyone else is interested, here is the answer!
There is no law that states a cap on COBRA, The cost of COBRA may be increased if the cost to the group health plan increases. However, the costs must be fixed in advance of each 12 month premium cycle.
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Good morning Chemosabes!
Jsw19: On the knitting, I love to knit afghans and give them away as gifts. That's probably my favorite thing. I also knit hats, and I love to knit and then felt purses and bags, have even sold several. (I'm pretty good at felting.) They also make great gifts. Another thing I like to do is little Christmas tree ornaments (miniature sweaters, stockings, trees, etc.). They're very cute. My dh and I have six nieces and nephews, and each year we give a Christamas tree ornament to each of them, so that when they start they're lives as adults with their own trees, they'll have a stock of handpicked, unique, and often hand'-made ornaments to put on them. They really love it. My sisters girls in particular, maybe because they're a lot older than the rest, can't wait each year to get their ornaments and see what they are. My sister says that when they decorate their tree, both girls (one is 19, the other 16) take out all their ornaments from the year they were born and lay them out in order, then open their new ones and start decorating. She says the ornaments we've given them pretty much fill up the tree. It's a really cool tradition, and quite heartening to know how special it has become to them. Anyway, I do love to knit (and quilt). It's a great thing to do with some Chopin in the background, or if you prefer, a book on tape (was it you who said you were trying those? can't remember). Right now I'm working on a very complicated afghan for my Aunt Bugs -- yes, that's what we call her. Her name is Clara Joyce, but when she was a child, her grandfather nicknamed her Bugs (who knows?) and it has stuck. She lost her husband, my uncle, this year, and so she gets an afghan!
Lizzy: You're absolutely right about the nurses (and docs sometimes) who have never heard of the remedies that we all read about, and not just on these sights but in seemingly reliable books and websites. My first Tx, I asked the nurse about shewing on ice chips to help prevent mouth sores (personally, I'm not at all convinced that this works, but still, it is advised by so many people), and she looked at me like I was from Jupiter. I also asked her about Claritin, and she still didn't seem to know what I was talking about. Then when I left, I looked at the little booklet my onc's office gives on coping with side effects, and there was the suggestion to take Claritin!
About the red sauce, I'm sure heartburn is part of it, but I was told by my onc's office that the caution was regarding mouth sores. Because it is acidic, it can irritate your mouth, cause an irritated mouth to turn into a mouth full of sores, or make mouth sores worse. I can tell you from my experience, since I have had such a problem with mouth sores, that they are right about avoiding the tomato sauce. BUT if you're not having an issue with mouth irritation/sores, I doubt there would be any harm. So enjoy! And when this is over, and my mouth no longer feels like it's full of razor blades, I'm looking forward to a big helping of your homemade lasagna! Deal?
Lisasinglem: Congratulations on your return to the stage! Sounds like it wasn't the easiest night of your life, but YOU DID IT! Way to go, girl!
Kimmie: I too have had a major problem with tooth sensitivity (or should that be teeth sensitivity?). I have to eat things at room temperature. The mention of a cold drink makes me shudder! And having the mouth sores, anything hot is out of the question, so room temp it is. I will say (and my onc concurs), that Sensodyne toothpaste helps. It's not magic, but it helps, especially if you use it three or four times a day for at least a minute. It can take a few days for it to start to make a difference, but it has at least for me. My teeth aren't just sensitive when I eat cold things either. It's all of the time, like when I breath in. It isn't excruciating or anything like I've got an exposed nerve, but it's bad enough to get your attention, and keep you uncomfortable. At first I was scared that I had cavities or something, which of course I wouldn't be able to do anything about until after chemo, but my onc told me it's not an uncommon se.
The constipation thing: Everyone is so different, and some side effects come and go, so I wouldn't say it's number one on my list of se's -- there are too many competing for number one
-- but it's definitely near the top of the list. My chemo regimen tends to cause more diarrhea, which I've also had, but I'm on non-cancer related meds that cause constipation, and then add the pain meds and anti-emetics which are hugely constipating, and I end up swinging back and forth between const. and dia., more on the const. side since I keep having to take the meds. Neither of which helps my poor little bottom! Ouch is right! My onc gave me a protocol for dealing with the const. It basically boils down to senna or senekot or senekot-s, beginning with two at night and two in the morning. If that doesn't work go to three in the am and three pm. If after two days, this produces no bowel movement, call doc. If it does, then the idea is to wean off, like back to three at night, two in the am; two pm, two am, one pm, one am. The problem is I never get to the point where I'm actually regular and can start weaning off, before I have to take more of the meds that cause the constipation, so I've practically been staying on three am and three pm. My onc says this is okay and that (this was my worry) my system WILL NOT become dependent on them in the time I'll be needing to take them. BTW, when I get to the point that three pm and three am still don't work (in addition to dietary/exercise stuff too of course) I don't call the doc, I take a slightly larger than recommended dose of milk of magnesia at night, and that works for me, without cramping. There, that's my two cents on constipation. I felt lucky that I didn't have to take any anti-emetics at all yesterday. A nausea-free day! Yay! Today, so far so good. But, darn it if my mouth doesn't hurt! Fortunately coffee still tastes like coffee to me, so I can enjoy my morning two cups. Now I'm using high protein vanilla boost in my coffee. Not bad. And it cools the coffee down enough for me to drink it. For those coffee drinkers, you might want to try it. I don't like drinking Boost/Ensure, but I need to, so this is a way I can get one in.
Good day to all!
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Butter tart and Beaver tail .. sounds like a couple of Canadian strippers.
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Kimmie68 - Wow, I just noticed last night that a couple of my teeth were sensitive to cold - I was worried it was a cavity or something but its JUST CHEMO!! Also, my daughter tells me I have bad breath, even though I have good cleaning - must be CHEMO!! I am glad my family is so tolerant.
I thought I really liked my new wig, I don't. Hats, scarves. Still have hair but its thinning. I was thinking of taking my old wig and making a fringe out of it for when all my hair is gone and using it with the hats. Anybody tried that?
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LadyinBama- you just cracked me up. You're totally right. Will pass this on to my Canadian girlfriends at book club next week....HA!0
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Wherria: it is so funny you talk about lasagna! I OVERNIGHTED lasagna to my friend from Manhattan who now lives in Jackson Hole! Geez...I feel so bad for you with those mouth sores. The doc/nurse disconnect with us and our unorthodox ways of coping w/chemo, I think might be a soft CYA policy as a result of our terribly litigious society. I don't care what works...I will take just about anything to avoid gross SEs!
Sweeney: you know it is very silly of me to assign you and Rachel, our Canucks, code names that lend you ARE Canucks! It is antithetical to the very nature of a code name that so glaringly lends a big arrow towards your country of origin!!!! This level of chicanery is just horrible, I must admit! Canadian strippers!!! Ladyinbama....good stuff! I think we are all going to get a skit on SNL!!!!
Ladyinbama: House Hunters!!! Does Sandra Rinamoto ever make you scared for her victims?! Like you don't if she is going to punch someone!!!!!! I love when she tells them something horrible and follows it up with that crazy smile!!!! I love when she starts the show by taking them to the neighborhood they could NEVER afford to live in!!!!!! Sometimes I feel bad for the people she is showing to but she is very good at what she does and I enjoy her show but her demeanor is just very entertaining to me sometimes.
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Question, is anyone not having any signs of menopause? I can say I really haven't noticed anything. Still have my monthly after the 2 tx I've had. ( YAY only 4 more!!!) just wondering, I was hoping it would stop because for 2 of the days it is HEAVY.
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On Chemopause- I had the mother of all periods after my first tx and haven't had anything since. I'm only 39 so I assumed I would probably continue along uninterupted, but apparently not. It hasn't been too bad not to have periods, although I would say I seem to be living in a constant state of PMS. Tears, recriminations, needling, tears, guilt, manical laughter, tears...the pattern continues from there. Needless to say my husband is LOVING it.
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And if Rachel and I are going to get renamed stripper names I think I'd like Buttertart...but in very Canadian fashion I'll happily take Beavertail too. As long as everyone gets along...that should be written in latin under our flag....0
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I had my first treatment and my wbc is pretty low ( This is day 16). I may end up getting Neulasta after my next tx. Does everyone get bone pain with this shot? And how long does the pain last? Days? Weeks? I plan on taking Claritin before I get the shot as I heard that it helps some people.
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Scrabblelady - my wbc were low even with neulasta. i had to go to the hospital er with a fever twice. No infection could be found and they sent me home on cipro. My 4th tx was postponed this week because I have a cold and I swear it is worse than any SE I have had so far. I don't know if claritin helps but i have been taking it.
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chemopause: I am not paused either, and don't have hot flashes or anything. Now, I am on that emotional roller coaster too, but is it pms or chemo or menopause, idk! My mom had a hyster at 29, but kept her ovaries. Years later a doctor asked her when she went thu menopause, and she realized she had no idea. An aunt on the other side of the family told me she just stopped having periods at 43, and that was it. I don't know if more or less symptoms would be hereditary. Or if it even applies if it comes from chemo. I guess the taxi will finish off what the chemo started.......
Scrabblelady, some people here have had a lot of pain and some not much. I take an OTC pain reliever, thats what my onc recommends. Mine is not much.
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sweeney sometimes when you're younger the periods stop during chemo and come back afterwards. I haven't skipped one but had a big scream/weepfest at dh the other morning. The next day I felt fine. I realized later it was the first day off steroids so I wonder if that (and constant nausea, iron boobs, baldness..) is contributing to these crazy mood swings. I was very upset with myself b/c my 5 yo who was in the next room started crying. I have to remind myslef to take a step back when I feel that overhwlmed, and also to check for little ears. It must be scary to have mommy sick AND crazy, sigh.
neulasta I got my third shot. With the first two I got some mild sacral pain around d 7 -8. This time I literally felt like somone broke my tailbone for the last 3 days. It hurts to stand up straight. I took two percocet last night (which makes me queasy so I had to add more antiemetics). This sounds wacky but decongestants always make my scalp/hair tingle so I don't like to take them, but after this I'm going to try claritin for the next cycle.
Carolyn
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Neulasta- I had 0 se with the 1st shot and some bone pain after the 2nd shot, go figure you'd think it would be the same each time.
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iowasue I was told I'd go into menopause but so far no symptoms. I just had my 3rd A/C. I'm 44 and they seemed to think it was a given so we'll see.
Carolyn
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Chemopause -- I appear to have stopped getting periods. I'm 40. I have had 3 TCH treatments. I got a period after the first tx, then one 2 weeks later (both very heavy), and nothing since - it has been over a month. We'll see how long this lasts. My onc wants to shut down my ovaries and give me arimidex after chemo rather than tamox. due to my Her2 status. I'm having some hot flashes, but thus far nothing I can't handle.
Neulasta - Tx 1, the bone pain was terrible - by far the worst se. Tx 2, the nurst told me that sometimes people only get pain the first time, and didn't have too much, much more manageable. Tx 3, I was in agony again - hardly able to get off the couch. (Although I also had a really bad cold at the time which may have contributed.)
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I called the cancer center cause I have two red lumps on my arm - along the vein. This is where I had the chemo leak and they flushed that with steroids and a whole bag of saline. That was august 30. Well, on Monday they drew blood - put on the turnoquet thing and the next morning I see these two red marks pop up where the chemo leak was. They are red and painful to the touch. I go in tomorrow morning for them to check them out.
I did a Google search - cause I freaked out -and I found that it is common especially with chemo and the veins are traumatized. Most people are advised to use hot compresses three times a day which is what my nurse said when I called.
So we'll see. Never a dull moment!
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Chemopause....I am 41. This is my 2nd round of chemo. My first round of chemo started in March and ended in June. My last period was February.... and I havent had one since. My second round didnt start back up until the end of August.... nothing in between either. So, I guess the question is once I am done with my last two tx, will I get it back.... honestly, I hope not, I dont miss it, dont need it, and the hot flashes are pretty much 1 or 2x a month now... before they were pretty regular. Although sometimes I feel like Im getting crampy, but I dont know if I am confusing that with the pains in my back and hips from the neulasta shots.
Neulasta - my first one was more manageable, my second was much worse. Will have to see how the third one goes. My wbc counts have been fine... it was my liver enzyme tests that were a bit off, but not enough to make the dr's panic. Will have to see how they are tomorrow.
Bad Breath - I had this problem with my first round of chemo, never had problems before it, and not having issues now. Im guessing it was just the Taxol/Tykerb(lapatnib) combo that was causing it.
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Lizzie---You haven't lived before you have had a buttertart or beavertail--if there is one thing that Canadians are good at--creating nice fatty desserts! (BTW--didn't take anything seriously---as Sweeney said--Canucks are able to take jokes...no prob...eh). I would send you a buttertart if I knew it would get through customs...Sweeney's from Ottawa which is the home of the beavertail!
I am heading to chemo#3 tomorrow--last of FEC. Having pain in left arm which I think is due to Yoga and my crap veins--hoping for trouble-free chemo tomorrow and easy needle insertion.
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Hi chemochickies, I read you guys all the time but not much is happening with me these days. I finally had chemo 1 1/2 yesterday, just taxotere and will have my cytoxan next Wed. the true meaning of chemo lite. My Doc said in his entire career he has never seen a reaction like mine to Cipro, I love being the exception to the rule. The literature said the chances of abnormalities in the liver test are 1.3 to.2.0%. I'm so proud. Hopefully we will be back on schedule after next Wed. I turn a glorious 65 on Oct. 14th so I have decided to skip it this time and turn 65 next year when I can PARTY. I hope everyone is as well as can be expected, and as my dear Mommy used to say "This too shall pass" and she was right, it always does.
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Rachel: Good luck tomorrow. I have my 3rd and final FEC next Tuesday. Let us know how you do. My second one was a little worse than first, but not much. Are you doing Taxotere next?
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Yup - Lizzy, on the meat. I hate meat - with some exceptions! I have been battling migraines with the chemo -had to lay off chocolate, etc.
but tonight I had some ground beef and had a headache within 15 minutes. I forgot that beef is one of those "inflammatory" foods when it is not free range. I remember reading that somewhere - that grass fed beef doesn't have that property. UGH. So I'm hoping the headache leaves soon. I usually have an aversion to beef but what I made for the kids smelled real good. 
I hate hot chicken as well. But I do like cold chicken, so I get my chicken protein by way of putting it in salads cold and such. I also like it in soup. But regular chicken to me - yuck. I hate fish - dislike salmon, although it is supposed to be good for you. I didnt' realize that about the bioengineering. What about the wild caught? Does that mean it's not really "wild caught?"
Basically all this leaves me with eggs as a major protein source, which is fine since my chickens are all laying pretty well right now.
I don't know if it has the same amino acids needed for the tissue repair that we need during chemo, but it's the best I can do right now! 0 -
My understanding of the chemo pause was that if it does not happen then, and does not happen when the tamox starts, you get more drugs to make it happen. It is not an option or side effect, it is what they are trying to do on purpose (if you are er+).
If you are hormone negative, it's a different story. This I have not researched.
Kel, beans or nuts for protein? Good question about the salmon. I know what we have, my FIL catches on fishing trips. Anybody feeling the conspiracy?
onemonga, I think you have it right--this too shall pass! Look how far everyone has come! Thing are getting finished! Has it really just been 6 or 7 weeks? It just feels like forever......
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