August 2010...anyone starting chemo besides me?!
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Best wishes to everyone today. I am seeing the neurologist about my numb and tingly toes and fingers. It will be interesting to see what he has to say.
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Clarification:
Herein lies the detriment:
Some people just arbitrarily jump on the net to discuss every nuance of every little thing they are going through and often times it is negative. Those people cannot see beyond their emotional incapacitation and do harm others with their negativity which is also not contrived but rather indigenous to their mental state. They just can't help themselves. At the same time, subjecting your own emotional equilibrium, often times before you know you are perusing the postings of a person deeply engaged to negativity, is a travesty and, sadly, one that cannot usually be avoided.
We are the "weather girls" as I refer to us when I speak to others about this thread. We seem to be able to weather just about anyting with aplomb and dignity...as dignified as sweating my wig off in a store can be. We are not the meek hearted.
"The weather girls" can overcome. Our spirit, and don't ask me how it all happened, is a resounding attestment to the will of women at large. If someone on our thread, who regularly posts has a bad time, we expect to hear from them and will support our fellow weather girl through that time
It is arbitrarily going "off thread/site" where hearing the worst of the worst is possible and this is what I mean about watching what you read. For reasons unknown, some people cannot see the good in anything and like my father used to say, give a drinker a reason to drink and they will become Irish on St. Pats, so goes the give a complainer a reason to complain and they will.
There are also opposites of the spectrum that can be tempered by a good group of "weather girls." Me, for instance, had on my blinders until chemo handed my ass to me! Others had an anticipation of a bit more of a rough time and we all came together, as true "weather girls" do, and supported them to take it as it comes.
This is the support that is so profound with us. I do think there was a modicum of serendipity at work when we all came together. We put our common cause before our interest in picking about personalities, we console each other, we listen and we support. We are "weather girls" and where life may take us to places we have never been before, we will always see it as a challenge and not an opportunity to complain.If you look for the good, you will find it and if you look for the bad, you too shall find that. Just watch what you treat your eyes to in this world because it can, in the end, rent space in your head. Put on a smile and put the "no vacancy" sign on your forehead.
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BTW-can someone please recommend a FRAGRANCE-FREE hand lotion?! That pharmacy aisle is way too long and I was sweating and had to go to....you guessed it....the bathroom! I just want to run in and grab what I need.
Thanks-
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Aveeno works for me
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Speaking of "Weather Girls", I just have to say..... IT'S RAININ' MEN! HALLELUIA, IT'S RAININ' MEN! WHOOAAA
*big grin*
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Well said Lizzy. I'm liking the "weather girls" moniker. A lot. And thanks to you. All the time. For each and every well thought out, well intended post. Biiiiiiiiiiig hug.
Calamtykel- don't freak out too much about last night's jabbing bone pain. I had that too. My onco told me it was a normal reaction to Neulasta. No fun, but normal. She eventually gave me some Tylenol 3s so I could cope with the pain when it is at it's worst. I don't take them very often, but Day 4 is always my roughest.
On Sweating- I've never sweat so much in my life. What the heck is going on? Lizzy you mentioned it too. Is this just chemo or is it menopause induced by chemo? I had one wicked period right after starting chemo and then nothing again since. Now you've got to remember I'm up in Canada- and I'm in Ottawa, a pretty northern city too- it's like 9 degrees here right now. AND I"M STILL SWEATING ALL THE TIME. Maybe it's just the body's way of flushing out toxins etc? Anyone else sweating constantly. And it's kind of a cold sweat too. Yuck.
On Exercice- I've decided to excercise every day no matter what. Just wanted to put that out there so I'm accountable. Did it last night. Did it again this morning. This is tough for me, I hate exercising. I'm 5'9 and have always had a reasonable BMI so have managed to avoid this. But I think I'm starting to gain weight and there's a little part of my brain that says "if you'd been more careful you wouldn't have gotten sick...." Now I know my onco said the opposite, "Nothing you did or didn't do caused you to get cancer at 39". But I'm a little bit afraid of exercise and sports and such, and it's a big hurdle for me. So now it's out there, I'm going to exercise more.
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Lisa- you just made me laugh right out loud....:)0
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Calamtykel - I just wanted to let you know that the pain you are describing is exactly like the bone pain I get from the neulasta. It is like nothing else - since it is in your bones, but especially in my legs and pelvis, and sometimes in my sternum. I have found that each treatment is different. #1 was terrible for about 3 days, #2 was manageable and came and went for 2 days, #3 was horrible again and lasted longer, #4 was manageable again, and came later but only lasted about 1 day.
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Calamtykel: totally forgot my Levaquin story. It was, again, the bronchitis from last October. I could not kick it and I did not realize the underlying cause was bc draining my resources! In any case, I was put on Levaquin and that is the one med I had an allergic reaction to. It does not immediately let itself be known as you just feel like you are not getting better/can't shake it. I think I also had some pretty bad joint pain but I cannot remember. Levaquin is a drug that you might want to be a vigilant about how you are feeling in the first few days. Kel--I seem to remember jabbing bone pain. Neulasta can give us jabs in the shoulders and "points (whatever that means)" of our bones but I would be a little concerned about the Levaquin. I hope you are going to be ok. Call the doc about weird stuff. It is a shame that they started you on Leva at the same time you start Taxol b/c it is going to be hard to discern what is causing what. Good luck.
Lisasinglem: yes, it is raining men! I would agree. Also, on exercise, I do every day. I only do 20 minutes on the recumbent bike for the first 8 days after tx but it is something. Just do one thing. It is imperative especially when this stuff threatens our breathing. It scares me so much to be out of breath from a slight incline.
Sweeney: I just spoke to my chemo nurse yesterday during bloodwork about the cycle, the sweats, chemopause etc.. .and she said we should get 1 *serious* cycle right in the beginning of chemo and then no more because chemo pushes us into menopause. We will come back out if it is "not" our time but that is what is going on. Right now I have on a Yankee tshirt, one of my old Bula skiing hats, sweat pants, the windows open and the coolest of sweat forming on my head!!!!!! I am so tired of sweating! It was 38 degrees here last night and there I am with my window open, fan on and under 2 comforters! I think my cat is going to call the ASPCA!
Believe it or not.... my long term disability DEMANDS I apply for Social Security!!!!!! Can you believe this?! It is so gross. In any case, that is where I will be for the next number of hours trying to get that app through for the 100th time. Hmmm...no wonder the site keeps crashing since 10% of the country is UNEMPLOYED!
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OMG...I forgot to tell you all the most poignant story from yesterday... I was walking into a store and the cutest little girl was coming out and she was with some older people, parents perhaps, but I also immediately noticed she was bald. In any case, she was rushing with another young person and they were giggling etc.. but as she was rushing she was dropping things out of her bag. Of course I stopped to help her and I said "cutie, we have something in common" and I took my wig off and said "I have no hair also!" She teared up and she was so cute. The older parental folks with her did not speak English and so I was unable to find out what made her bald but one of them did say cancer. I told her I had cancer also and, not only does it bring us together but it makes us super powerful!!!!! Her smile brought tears to my eyes. I am going to pursue volunteering with kids who have cancer at Yale. I wanted to give her the biggest hug ande tell her everything was going to be ok but I think my smile said it all!0
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warm fuzzies... (c:
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IMPORTANT ARTICLE IF YOU ARE CURRENTLY IN FIRST LINE METASTATIC TREATMENT
Just came across this article today... read it, discuss with your Onc, and see if it applies for you.
Prolonging First-Line Chemotherapy Improves Outcomes for Patients With Metastatic Breast Cancer, Meta-Analysis Shows
http://www.sciencedaily.com/releases/2010/10/101012101845.htm(BTW, my wife's CA 15-3 has dropped from 1003 to 102 after the 3rd of her 6 TCH treatments. 3 down, 3 to go...)
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Hi gals, just trying to catch up on posts as I return to the world after AC #3. The marinol helped me to have almost no nausea for the first time but unfortunately it did not help with my lack of appetite. My onc kept insisting that it would give me "the munchies" but really it just made me groggy and thankfully not nauseated. I didn't regain my appetite until last night so I am finally this afternoon starting to feel a little more energetic. I hate AC so much, I am glad that I only have one left but I am already dreading the six days of feeling like crap that follow it and wondering what Abraxane will bring.
On the Taxotere/Taxol allergy stuff, that was me who had the really bad allergic reaction to it. I was supposed to do TCH and about 15 minutes into the first infusion I had a reaction. I thought it was important to share that here because I wanted to let other gals know that it is a possibility and if you feel ANYTHING funny during treatment, let the nurses know immediately and they know exactly what to do to help. So I was switched from TCH to AC and Abraxane. Abraxane is currently only FDA approved for metastatic BC but is being used for earlier stage patients if they have a Taxotere/Taxol allergy. Abraxane is less likely to trigger an allergic reaction than Taxotere/Taxol (something about how it is made) and overall all of the taxanes are supposed to have less crappy side effects than AC. I have heard that body pain is not uncommon with Abraxane and maybe the other taxanes too. I hope all of you who are starting Taxotere and Taxol do well and find it not very difficult. The anxiety of starting a new treatment and not knowing how it will affect you is rough but as Lizzy says we are weather girls and we will get through it!
Sweeney I am exactly the same as you about exercise. I am 32 and have never been athletic and never exercised much, just try to eat healthy and my weight seems reasonable. But I do have moments where I wonder if I had exercised more if that would have prevented this. I have been trying to take walks but not doing a very good job of making myself do it every day, there's just so many other things I'd rather do! Good for you for making the commitment to do it and I will try to do the same!
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Ladies, I'm so frustrated I just want to cry. I'm feeling absolutely exhausted today, and I'm afraid I won't be able to do the show again tonight. I had to sit out for the second half of Act 2 last night. I'm going in for my weekly Herceptin today, and I feel like that is all I can muster for today. The show is just so energetic and taxing that I dread going there. It makes me so sad and so upset becaue I am usually the one who plows through no matter what. I've performed while sick, with laryngitis, during food poisoning (I literally puked in the bathroom, called for a breath mint and walked onstage). It just makes me so upset to think that I'm losing the desire and ability to do what I love more than anything.
I know that this is temporary, and I am getting toward the end, which means that the exhaustion is accumulating, but it really upsets me. There are only 3 performances left, and I still don't feel like I can go in tonight.
Sorry, just needed to vent a little. Off to the onc...
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Hi Everyone:
Sorry I haven't been posting in a while but since I finished chemo and have a couple of weeks before starting radiation, I am trying to get some extra hours in my second job to pay some bills, while I feel okay and have the time. Anyway, I have been reading occasionally and I really feel bad for so many of you suffering with colds. Like I said before there should be a rule that when you are doing chemo you can't get sick...side effects are enough to deal with without an illness. Hope everyone feels better fast!
On side effects: I don't know if anyone else will agree, but now that it is all over, I don't really think my side effects got any worse as the treatments went on. Except the fatigue...that was cumulative! The difference I think was in my ability to handle the side effects. When the whole thing started I put on my "brave face" and powered through, no matter how I felt. Towards the end I definitely got tired of feeling like crap after treatments and it became very difficult to put on my "brave face" and power through. That I think is why you feel worse at the end, mentally you are tired and just not able to brush the side effects aside anymore. Well, that's just my opinion anyway.
On sweating: OMG....I have never sweat so much in my life. And the days on the steroids when you got those "mini hot flashes"...boy was that interesting! Also, throughout this whole thing I have no tolerance for the cold either. So, a couple of weeks ago when the weather turned and it went down to 50 at night.. .there I was under 3 blankets, with my socks on cause I was freezing. Then all of a sudden I would be whipping off the covers because I was sweating to death from a massive hot flash!! Talk about confusing!
Lisa---everyone in the office turned and looked at me when I read your "raining me" response, you had me laughing out loud.
Lizzy: The kids make you cry. When I think about them doing what we are doing now, and sometimes worse, it makes me feel like the biggest wimp for ever complaining! And they maintain their positive outlook throughout it all. Truly amazing is the innocence of youth and their tremendous faith in good! I wish we could all go back there.
I will be starting radiation on November 2. I go to get my tattoos next Wednesday. And no, for those that are curious, you have to get black dots...no green clovers, or sunny faces...just black dots!
Hope everyone is feeling well.
Debbi
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Sweeney - yes yes yes - sweating! I have been sleeping with the window open - with my big fuzzy hunter's cap on. I whip it off when I get hot and it does come on fast! Then I get cold again. Hat on , hat off.....covers on, covers off. Never happened until I started the decadron though and I'm pretty sure it's the steroids that's causing it!
Regarding exercise - you can't beat yourself up. I have a friend who was a runner who got BC. I have been running since January and I hope HOPE to be able to pick it up again once I'm done with all this treatment. Exercise is worth it - it makes you feel great. Just pick something you love - I love being outside. If I had to be on a treadmill or in a gym, I would be unhappy.
Lisa -- I completely understand what you're saying. I feel like so much has been ripped away from me. I wanted to continue running and exercising and then with the port thing, then I couldn't because that had to heal. Now that it's feeling better, now i have bronchitis. So now I can't do lots of exercise because of that. I'm coming to the conclusion that we just have to submit to it. We're strong women- we don't want anything to get us down. And then BC comes along and takes us down for SO long that we're anxious to get back up again and resume as normal a life as possible. And there are some things we just can't do. I feel sequestered in the house too - now that I've got this cold hanging on, I';m afraid of being in crowds and picking up yet something else.....one more handicap.
Lizzy - yes, the antibiotics really scared me too. But I'm feeling a little better - I'm thinking that since it is not going away like it should that it is bacterial and I better just stay on what I'm on. I talked to two friends who both said that z-pac never works for them. So I'm afraid if I requested to be switched that maybe that might not be the right thing. I'm four days into it today so I'm going to try to continue and just watch for side effects. Also, I had this weird scab near where my port was placed. It never fell off and now today it finally did - finally! But now it's bleeding blood and clear liquid. It's not painful. I have a sterile pad over it and put some bactine and neosporin on it, but now I'm glad that I'm on the antibiotic also because of that - it's a wound that's taking a long while to heal, I assume from the chemo, so hopefully it won't become infected. Hopefully it will dry out by tomorrow, or it's another call to the doctor!
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Lisa- totally get where you're coming from. But please don't beat yourself up, it's all transitional. I was in exactly the same mental space last week. I was sitting there looking at myself and feeling like, "will it ever get back to frickin' normal??? Will I EVER be ME again????" I started bawling my eyes out standing at the kitchen counter and my husband came in, didn't even have to ask what was wrong, and started rubbing my back. He was the one who reminded me I will be me again. And soon. Ish. There will be plenty of board meetings, and work travel, and crazy schedules and such to come. Now is just the moment to sit tight and get better. Sometimes it feels like cancer has deeply affected my core personality. But it hasn't. It only FEELS that way. Tomorrow will be better. Next Wednesday might suck. Then next month will feel great but Christmas might be rough. It's as much of a mental battle as it is a physical one. Anyway, I hope you're feeling okay about things, I've just been blown away that you've been able to do your show at all. And look at how many performances you HAVE managed. Hell, I can't even stand in line at the grocery store without breaking into a sweat and gettting nauseous at the scent of the stinky sweater guy in front of me. YOU have been singing your heart out on STAGE. I'm in awe. Really.
JSW- You're on. Let's try and report in when either of us exercise. I'm going to do my damndest to get out there again tomorrow.
Calamtykel- totally get the hat on hat off thing. That's me too! Also, if I'm freezing I'm begging the dog to join us in the bed and then 20 min later I'm booting him off. Poor Paddy (80 lb chocolate lab!!)
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Thanks for the encouragement, all! I really appreciate it. This too shall pass.
Hot, cold, hot, cold. I am with all y'all on that. My mother-in-law gave me a little personal, battery-operated fan to help with the hot flashes. But as soon as they subside, I'm freezing and getting goose bumps!
sptmm62 - I think you might be right. The side effects themselves don't get that much worse, but my mental state is breaking down, and I'm just not able to mentally take the physical effects as easily as I could at the start. Maybe that is part of the journey. I keep telling people that I'm hoping this cancer crap is like a cocoon, and I will emerge a beautiful new butterfly after it is over. That is one thought that keeps me going.
Love to you all!
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Lisa - I understand that. I was thinking tonight about how I was after my surgery. I was a different person - I was so determined and so upbeat and so much stronger than I seem to be now. I recovered so fast and I didn't let it get me down -- I even went running when I had my drains in. I was so determined that I wasn't going to be like other people and collapse under this - it wans't going to get me down. BUT It's like you said, you "wear down". And I'm feeling that too. I look at the other cancer patients in the waiting room now and instead of seeing "them" I see "me". I told my doctor that - that my spirt was beginning to break under this and she said "Don't say that - you have a great spirit and you're going to make it through!" UGH! But the mental part is hard - and of course the medications also affect our emotions and thoughts. I too, am amazed at what you've been able to do!
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When we are lamenting our circumstances remember there is not a single decision that we could have made that would have helped us avoid fate. Not more exercise, not eating differently, not having kids, not *not* having kids, not using different hair color, avoiding fried foods - this is life, as it were, and we did not make a single pro-bc choice...it just happens. An ex of mine reached out to me recently to let me know he has intestinal cancer. He just called me a few nights ago to tell me he feels he just made some bad decisions. I reminded him what I just told you. Do you honestly think if someone told you eating a Ring Ding was going to cause bc you would have still eaten it?!! Don't hold yourselves responsible for a dubious twist of fate. Recently I just told a friend if I had a choice between me having bc and someone else, I would choose me. I think I am better equipped to handle this challenge than a lot of people I know. Some of us have to get cancer, period. It is the only way more can be learned about the disease. They say a risk factor is not having kids but 95% of you all have kids. They say to exercise and I have been a member of Bally's Total Fitness since 1989 and actually do USE the gyms rather than just carry the card! Don't blame yourselves...you did nothing to bring this on. I really don't even know if they will ever find out what causes cancer because I think for each person it is a different set of factors making the cause damn near impossible to find.
Personally, I remember sitting on Metro North at 6AM and my bra broke. I had to do the whole day, happy hour, dinner with friends and a return home at about 9:30PM to find my breast had started to bleed in the exact place where I would get bc only 5 year later as my toilet paper solution had failed at some point in the night no doubt under the auspices of liquid anesthesia! Bottom line is no one knows what causes it so don't drive yourselves crazy, lamenting perfectly innocuous choices and holding yourselves responsible. That is KANGAROO court if I ever heard of a version!
JSW: I believe you can get through anything! Good to hear from you.
Fatigue: to all of you talking about this, I am wiped out over the tiniest of events. I keep pushing but I am so disgusted with my body pushing back and saying no. I am very afraid, as my next one marks the ½ way mark, and these SEs being cumulative, what January and beyond is going to look like relative to being post-chemo and dealing with that lingering fatigue. I just hope it only lingers and eventually goes.
Lisasinglem: I agree, and concur, on the thought of emerging as a beautiful butterfly when this is over! Good stuff!
Aveno fragrance free: Omaz...thank you, thank you! You made my life so easy....skidded into Walgreens and grabbed it...wonderful stuff!
Cigarette smoke: smells, smells, smells. I am sorry to any of you that might smoke but I cannot stand the smell and I noticed now, with the help of my new BFF chemo (!), I have a heightened awareness. I was stuck in traffic due to a little road work. All of the sudden I smell it and am looking around to see if it is someone in a car near me....no one. The smell was so gross it was driving me crazy. I looked into the parking lot of an adjacent strip mall only to notice a young man on his phone, SMOKING, roughly 100+ feet away!!!!! It smelled like he was in my backseat!! I was getting so sick from the odor. Thank you chemo!
Bula hats: I found the greatest hat that outlines my face and has material that comes down over my ears...love Bula hats! This will be my new *wig* going forward!!!!!!
Sptmm: funny you mention youth and their outlook. I was in a large crafts store chain yesterday and there was a woman there with her teenage daughters. They must have been 14 or 15. In any case, something got them laughing and they just got into a laughing jag. I started laughing, too, because everything is funny to me and I still carry with me ruminations of my youth and, perhaps you all could have figured this out by now, my single parent father had his HANDS FULL with everything-is-funny over here!!!!! In any case, their mother asked me NOT to encourage them. I told her she SHOULD encourage them to enjoy their youth. All I could think was why the hell is it a problem that they were laughing so much?! Don't you dare tell me what to do either, Ms. Misery! My brother has told me on more than one occasion every wants to be me and why? Because I say what people are thinking! In any case, my tart response to wicked wanda, their mom, had them laughing all the more! Let the kids be kids...let them laugh, man!
Calamtykel: If you can get through the Levaquin without an allergic reaction, that bodes very well for you. Apparently it is one of a new, and very potent, line of antibiotics designed to kill super bugs that are not responding to all of the others. I was sort of sad to find that out when I had my allergic reaction. I am, however, very, very, very happy you are feeling better. I am also a huge fan of hunters caps!
Why am I posting at 4:30AM?! Because sauna body over here decided to turn up the heat while I slept, had to get up, turn OFF my little space heater (yeah...what was I thinking!??!!!!!!), remove covers, open window, turn on fan...and repeat process of trying to get some sleep! As it takes me about 45 minutes to cool down from a "hot flash" that wakes me, I figured I would write to the weather girls about the middle of the night heat wave in CT!!!!!
Talk to y'all later!
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Ladies - I have a call into my oncologlist. I was up all night with shooting leg pains. First, I thought all this was the neulasta. but this is now day 5 and it's not getting better, it's getting worse. My legs are very weak and feel like jello. I am going off the levaquin as of today - and am telling the doctor that. There are too many permanent SE's to this antibiotic when I google it.
I told a friend and she said the same thing happened to her but it was the Taxol. Has anyone else had this? I also am not sleeping at all at night. I took a percocet last night which eased the pain but did not put me to sleep. Think I slept a total of 2 hours. My mind is racing and I'm panicked that whatever this is might be permanent damage. It' s like when I'm at rest, it's these shooting pains through my hips, legs, knees, whatever. Then when I stand, my legs are so weak, like rubber. Part of me wants to run - just get out and exercise it "off" and that seemed to help last night. but today it's still there.
Doc gets in late today so she's going to call once she's in -----
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You might want to look in the starting chemo in July or earlier threads. I hope you feel much better really soon. I am hanging on your words.
Hugs Ginger
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calamitykel, Sorry, that sounds awful. I know Taxol can cause alot of bone and joint pain, so not sure if that's what is going on. I just last week started seeing a trainer at our local Y . They offered it at no charge and offered to waive our membership fee after I tried to put it on medical hold to save money. (I did get weepy at thinking of canceling some of the kids' stuff so I'm really happy we didn't have to). The fitness director is trying to get a grant for cancer patients b/c she sees alot of people like me, under alot of stress with the diagnosis and dealing with SE's but intimidated by working out. Anyway, I've never exercised; always control my weight through diet and stress and now want to get rid of some of the stress. She told me that she's found that if people exercise when they are sore they feel better. We are starting off very slowly but I commited to a 12 week program (which is exactly what my Taxol is!:-). She meets with me once a week and I go in twice a week on my own and log what I've done. Just mentioning it in case anyone wants to look into similar things if they belong to a Y or fitness center. Some of the stretches/ small weights are finally loosening up the muscles above my TE's and we are doing lower body work to help prevent sciatica/ bursitis (both of which I've had - so sexy;-) during the Taxol. Sorry so long winded; just thinking maybe more gentle excercise like walking , stretching, leg lifts, will help? I always find my knees give out when I've sporadically tried to run but I know people run during chemo so thta may be just me.
I know at Sloan we always told people to try to get out for brief walks even when they are fatigued; napping's okay but too much can actually increase fatigue. If it's neuropathy pain there are different medications they can use, but they definitely have stuff to help - no reason to suffer. Hope you are feeling better soon. Try not to get down, I know I started feeling blue into the third week on my cold (combined with the 7th week of nausea,lol)
OK, off to first Taxol this afternoon, hoping for no reaction to it. Think I will ask them to premedicate with ativan b/c this is one of those times when being a nurse is giving me just enough info to scare myself into a reaction!
Carolyn
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As I recall the Doc said the Taxol SE was muscle pain, the neulasta bone pain. I imagine that muscle pain could feel like bone pain since they hold it all in place and such. Would that require a different pain killer? Also would pain killer work on this sort of pain? If anyone knows what they are talking about please comment as I am quite unsure about this.
I will hear today when I go for my first Taxol. I finish my 5 days of anitbiotics today but am still coughing.
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Calamtykel: I would get off the Levaquin and see how you feel. As I told you, when I had an allergic reaction to Levaquin I had bone and joint pain. I went back to my GP because A) I was not getting over the bronchitis and
I now had bone and joint pain. I would start with the Levaquin. Also, don't forget the Neulasta can last longer and it might be, in some way, being exacerbated by the Levaquin or what you are feeling is the cause of Levaquin itself. To be honest, I understand why your doc put you on Levaquin because it is the new frontier but, and because you are on chemo and neulasta, perhaps not the best choice.I am editing this post because I just had an epiphany! I wonder if it is possible Levaquin works somewhat like Neulasta in an attempt to increase wbc? No clue but it might have some validity...?
Good luck
Mark Twain: I have been through some terrible things in my life, some of which actually happened!!
Diagnosis: 4/16/2010, IDC, 2cm, Stage IIb, Grade 2, 2/18 nodes, ER+/PR+, HER2-0 -
Ginger: I don't think, but also don't know for sure, that traditional pain killers will work on Neulasta pain. The pain we get from Neulasta is it getting inside our bones, ramping up marrow production. Traditional pain killers only have immediate access to the bloodstream. Bones get blood, obviously, and they are porous but I think the ability for a pain killer to work effectively on this type of pain is not evident.
I also just did a basic google search on levaquin and bone pain and got several links talking about severe muscle weakness, bone pain and joint pain on Levaquin.
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Calamtykel- never had the kind of shooting pain you're describing with Neulasta. But it was very painful, reg Tylenol 3s helped a lot. One thing I can say is that I did have Neulasta pain for up to 8 days. It wasn't over quick with me. It seemed to linger and linger. I hope you get into your doctor quickly, heck I hope you're there now. Let us know when you talk to her. Thinking of you this afternoon and sending good vibes. Hug.
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Thanks Ladies! Doctor called me within minutes of getting in. Took me off the levaquin immediately - just to get that out of the equation. She said the kind of pain I was describing -the weakness and shooting pains can absolutely happen with Taxol but that the levaquin COULD be causing it or even exacerbating it, so the leva's out. Fine with me.
A friend of mine wrote and she said on taxol, she had the weakness and also the pain after several days after treatment, starting at about day 2. So right now we just don't know. I have the go ahead to take Motrin since my platelets have been good all along.
Doctor wants me to call tonight if it gets worse or over the weekend. I think the antibiotic is causing me to be very nervous too and unable to sleep. I'm hoping that once i get that out of my system I'll sleep again. I'm supposed to take it easy today - doctor's orders. And just praying that it goes away.
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OH - and this was interesting. Doctor said that neulasta can feel "different" and have different SE's on Taxol than it does on AC. Bizarre! But I did notice that this time - I had much more actual bone pain when I touched places on my body after the Neulasta. I'm just wondering if all of this is a combination of all three drugs and I hope to feel better soon. There's so much I want to do - I ran out of vacuum cleaner bags and looking at my rugs is making me crazy -nearest store is 20 minutes away and doctor's orders to REST today - UGH!
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calamtykel I'm glad that you heard back from your doctor so quickly and I hope your pain goes away soon. It probably is a combination of those 3 drugs together so hang in there and hopefully it will fade as the antibiotic leaves your system. Maybe you could try some benadryl tonight to help you sleep?
Omaz Let us know what you hear today about the tingly toes and fingers. I have heard that can be a side effect of taxotere & taxol, hopefully you are close enough to the end of your treatment that they can get you through it without the numbness getting any worse!
Oh and the hot flashes, ugh! I am having those too, though we are finally getting some cooler weather here and that seems to help a bit. Just one more of the joyous side effects of chemo!
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