August 2010...anyone starting chemo besides me?!
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Just wondering - I know a bunch of you have coughs and such -- I'm going crazy with mine. It goes away and my lungs and bronchials are totally clear- -for many hours or half a day or all night or whatever. Then during the day I'll get episodes of a rattly wheeze that sounds worse than it is, but it's annoying. I don't feel like coughing, but I have to make an effort to cough to try to move it. If I cough anything up, it just sort of goes in my throat and feels thin and scant and watery, not like that awful thick stuff. I'm just wondering what on earth is going on - I feel like I'm getting better but it just keeps coming back. My nose is finally clear. I'm on a high power antibiotic but I think it still may be viral at this point. Just wondering if anyone else has this --where it comes and goes. I have no fever and I don't feel sick (of course the decadron could be helping) but I can't help but worry about this and wonder if and when it will ever go away! I'm not prone to lung issues so it's very annoying...........
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calamtykel - possibly a bronchodilator (inhaler) may help you, could ask your doc about it.0
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DAMN!!! Just lost a well thought out and somewhat lucid post. Sorry! I read everything and carefully responded. Then hit some random button (probably due to chemo-brain, more on that in a later post) and LOST everything. I know. I know. Use Word.
Anyway- the highlights in no particular order. Calamtykel- Yes, still have a hacky cold. Three weeks now. Rachel, no fair that you had to do birthday party for youngest and face down SEs. Lizzy glad to hear your pots and pans are clean. Lisa glad you're on the couch. Texas, you look really good bald. ALL- Does everything stink really badly at your house? Or is it just mine? Also, has anyone started radiation? Is anyone else worried about their long term mental capacity once all of this is over? And is anyoone else craving salty things?
That's about it. But the previous message was much more nuanced, charming and had sprinkles of frivolity. Sorry this one is so blah. Night friends.
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Calamtykel: You are TOTALLY NOT a SE peruser! Totally not...what I find injurious is people who REPORT their awful SE stories on the www and the like. There is such a small percentage of horrifying SEs with all of this stuff or, as we know in the states, our insurance companies would NOT let us even get this stuff. You have a total zest for life and, as real as SEs can be, a zest for life will help you shrug off a lot of unimportant stuff. That, in and of itself, is your greatest blessing. That is why you don't toil waiting for a SE to occur. Some people get really sick, bottom line, but they are in a pretty small percentage and we probably DON'T hear from them as we do some that just blow up every little detail to it's greatest magnification. Thankfully we don't have anyone like that on this thread and, to be honest, for this reason I have to temper my own reaction to what I read elsewhere for being struck with misplaced exuberance (!) over nothing!!!
As for the cough and your feelings in your chest, OTC drugs can mask and manage symptoms but don't get *rid* of anything. Now that you are on an antibiotic, this is something I did last October when I got bronchitis so bad I was out of work for the first time in years with a sickness. Of course a few months later I would find out I had bc which surely compromised my system but who knew?!!? In any case, I had that nasty lingering, thick junk in my bronchial airways and I actually drank a lot of tea and, honestly, I sort of inverted my body a bit to get it OUT! I would lay on my favorite reading chair with my legs over the back and my head on a slight downward trend due to pillows under my butt and would get it out. I also bought a steamer (personal vaporizer really) and used the little vicks circles in the bottom before I did my short inversion process. It worked as I got it out but I only steamed it up and inverted for a few minutes each time.
I am glad you had some time with your daughter today. It is important that she hear the real deal from you. My Godson was here this weekend and he was talking to me about this. He is such a love! In any case, I did tell him no one promised anyone they would be here forever and that is why you make the most of each day. It is so hard to talk to kids and be honest, however. Tough stuff, woman!
Liz
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Sweeney: we have all been *there!* I compose in MS Word and cut'n'paste here. I have lost countless items typing here. If you are in MS Word and make a mistake, CTRL+Z will recover your last mistake. I am sure you knew that but I like to pass it on whenever I can!0
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Sweeney - I notice the smell too, subtle but kindof sickly sweet or something. Can't pinpoint it. And, yes, I too seem to taste the salty things the best.0
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Good morning Chemosabes! I hope everyone has a wonderful cancer-free zone kind of day, well as much as possible anyway.
My dh left yesterday for Indianapolis for 3 1/2 weeks.
I'm going to have to be very vigilant about keeping my emotional head above water. I have some friends around here, but most of our friends don't live that close by, and so since I don't work, I am going to have to stay as active as I can to keep from getting too depressed and lonely. Of course, this fourth chemo has completely knocked my on my butt, and I can't do very much for any length of time without getting extremely short of breath and dizzy and weak. Yesterday I invited a friend to go shopping with me to celebrate the news that I'm done with chemo (decided not to go for the six TC treatments and stay with four), and we went to one store, bought a few pieces of clothing, and then I asked her if we could just go sit in our booth at our favorite diner and have coffee, because I was starting to feel dangerously weak. That's all I could do. Of course sitting in a diner and talking is just as good as walking around a mall, so no complaints.My 71-yr-old mom had to have a stress test two about two and a half weeks ago, and still has not gotten to talk to her pain-in-the-ass cardiologist about the results. Last week she called her PCP and his PA got the results sent to their office. The results said that my mom has had an "old" heart attack (we have no clue about this), and "the doctor will speak with her about it at her appointment on Oct. 25th." How ridiculous is that??!!! She's tried calling, paging, and begging to get in sooner or to talk to him on the phone, but nobody will budge. She's beside herself, frustrated and scared. My dad and I are champing at the bit for her to allow us to call and raise a stink, but she's been so anxious about the whole thing, she told me last night that it will just be better for her nerves if she just tries not to think about it and waits until her appointment. I respect that. All the phone calls and waiting for return phone calls can be very depressing and anxiety-producing, but it's driving me crazy. She probably needs to be on a new medication or something, and this cardiologist is just letting her hang there. Mind you, this is a woman who has already had two strokes, but has never had heart problems (other than high blood pressure), so this is all a shock and very scary. She is not in good overall health, and because of a chronic pain problem can't really do much physically. She also has severe depression, but she is doing the best she can. I told my dad I wish I could go down to Texas myself and just walk into that cardiologist's office and not leave until I had her an appointment this week. I've tried to find a way for her to get a referral to another cardio, and she talked to the PA at her PCP's about it, but she said it would take just as long or longer than she already has to wait. It seems so ridiculous. I've always been able to get squeezed in with specialists when I've needed them in similar situations. I'm wondering if it has to do with her age as the elderly are not always given the attention they need or maybe their insurance. I don't know. I guess I'll stop ranting, but I'm just overloaded emotionally, and I'm having trouble dealing with this news about my mom. I worry a lot about my parents. Neither is in good health, and they don't have much money or the best insurance, and they don't get treated by the medical system very well, and I feel so powerless to help. I do help in whatever way I can. I make phone calls for them. I research doctors online. Sometimes I talk to their doctors for them, because they are not very medically savvy. And I help pay for things when I can. But I guess there isn't anything more I can do about this one except help comfort and support my mom emotionally. She just doesn't deserve this. Even the PA at her PCP's was outraged, and said this cardio has opened himself to a huge liability. I almost want to call him and play that card and see what happens.
Anyway, I'm still in SE land. The cold is better mostly, still coughing and SOB easily, but my sore throat has gone away. My last complaint, and then I'll shut up: I HATE THIS WATER RETENTION!!!!!
Love and hugs to all my dear friends here. I truly hope everyone starts feeling better after all these colds and things. And Lizzy, you are right. We have a wonderful group here (and I say this despite my last few minutes of complaining), of strong, positive and forward-looking women. How did we get so lucky as to find one another? I am grateful to each and every one of you, and I'm sorry to sound like such a bummer today. I'm just scared, I guess.
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Good Morning Ladies, I have a question, who had the scar tissue scar? I have a ? about that. thanks.
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Hi all,
ok, took my 5 yo to school today and he said to one of his classmates "do you like that thing on my mother's head; uhhm- what's that thing called again mom?" I think I officially give up on wearing the wig around him; he thinks it's a conversation piece! :-) I usually don't wear it but have to go into the city for a drs. appt so thought I'd look 'normal' - so much for that.
ladyinbama just wondering (hoping) you're home and feeling better
Carolyn
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Day 3 from taxol - things are pretty good. If it weren't for the darned rattle and mild congestion I'd be in great shape I think.
Lots of neulasta pain last night but not aches - more like any place I touch a bone it feels bruised. Rubs, jaws, back of the neck, skull, pelvis, wherever. It sounds worse than it is -just moving around and doing stuff is okay but pressing anywhere hurts. Hate this darned shot. But maybe it will help finally kick the rest of this cold!
Not much sleep --I guess the decadron's still hanging around. Going to try to nap today a little - just got the three younger kids started on their schoolwork and dropped my daughter off at "work" - she's 14 and babysits for the ladies' Bible study at church for two hours every Wednesday morning. She makes $20 each week so she's totally thrilled!! The fact that I was able to bring her this morning is amazing - usually the wednesday after chemo I'm curled into a fetal position and my husband is calling our neighbor to bring her over (since she goes to the Bible study too.)
So just hoping for a good few days and to finally get rid of all the wheeze - I like the idea of the inhaler if this doesn't clear up, and I"m going to look into it --thank you!
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ckptry - has he ever tried on your wig? Maybe he just wants to see himself in it! We had quite a hoot when my husband tried on my cheap wig - oh my, rockstar wannabe!0
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Calamtykel--I also have a cough that is exactly how you explained--If I don't cough, I feel OK, when I cough--It feels like I need to cough something up but nothing comes (nice conversation!). My Oncologist said it is prob just a chest cold and did recommend buying OTC cough syrup--which I did--I don't know if it is really working or not.
I have my bloodwork and exam today as they will try and do my chemo tomorrow instead of Friday (prob cause Doc wants day off or something). I am hoping to stay on track but nervous to start Taxotere as I have heard so many horror stories. My Doc said not to try and listen to "war stories" and that everyone is so individual--but hard not to esp. when everyone seems to have a hard time.
Yep--My son's bday on Friday--and his bday party on Saturday--granted it is out of the house so not a big hassle. No way that I could have that many kids at my house after chemo.
ckptry--my kids were fascinated with my wig, scarfs etc---they tried them on--walked around the house--like anything with kids--they quickly lose interest!
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Rachel - I agree with your doc on not getting too caught up in the Taxotere fear. I've been on it for 4 treatments now, and despite the hard times, I am getting through it just fine. I don't like it, but I wouldn't say that it is debilitating. The unknown is always scary, but as they say "every body is different" and you may sail through the Taxotere with few problems. That's my hope for you.
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omaz, rachel He tried on the wig and hated the way it felt. That's a good point though, he'll probably lose interest if I wear it more often.
wherria, congratulations on being done! Sorry about dh being away. I'm sure you'll be ok, Just as you say try to keep busy, and try to get out even if it's just shopping or to the movies if you start to feel alone.
calamtykelI got the cold about a month ago; the kids had it for 2 days and then passed it to me. It took a good three weeks for it to pass. I had a prescription for the zpack but didn't take it because I never ran a fever. i did take claritin for the first time after my neulasta shot and I'm wondering if that helped finally zap it. Anyway it's now completely gone except for a drippy nose which I think is due to lack of nose hair so hang in there, it does go away! That's nice about your daughter, both your talk and her job:-)
Well, I'm off to the podiatrist tomorrow for what I think must be an ingrown toenail. Who would think I have bc and my biggest problem is my big toe. I guess life goes on!
I'm with those of you sensitive to smells. My son is a real snuggle bunny. He loves to climb in bed and cuddle in the morning and it's my favorite part of the day. It stinks that lately I can't enjoy it as much b/c his breath smells bad ; something I never noticed before so i'm sure it's my new bionic sense of smell. DH steamed broccoli the other night and I felt like I could smell it for days.
Carolyn
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well, it seem that these nagging coughs sure do go hand in hand with chemo! Don't know what I'd do without you ladies! I feel otherwise pretty well, despite being day 3 out of taxol. Lots and lots of neulasta owies though - yikes! It's like every bone I touch is sore. And everything else - it even makes my breast sore and port area. Like everywhere there was an old wound suddenly is sore. Hopefully that will resolve though!
Rachel - I'm not on the Taxotere, but Taxol and I know how you feel - it is scary. I feel a little over the hump here since I'm day 3 out and it's a WHOLE heck of a lot better than the AC on day 3 - but I know I'm not out of the woods since the SE's are cumulative. And if I'm going to worry about that, then I'll be worrying for the next six weeks! And try to remember that it's really rare to get every side effect- so it's overwhelming when you see the SE lists and think about it, but everybody's different. Lots of women have said that the Tax's are much lighter than the AC's. And it's okay (and good) to take your B vitamins with all of those taxene family drugs - many oncologlists recommend it -they are not anti-oxidants and they will help protect from nerve damage.
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Hi All,
I am feeling a need to apologize for the content of some of my posts. I think I gave insufficient thought to how potentially anxiety provoking it would be to others to hear about my allergic responses to Taxotere. I am thinking particularly of you, Calamtykel. I think that I posted hoping to hear how others who might have had this experience had handled it, but I gave insufficient thought to how it would feel to those about to start on one of the taxols. I remember that there was someone who did have trouble who posted early on, so when I had my response it actually was helpful to me to have heard about it (my onc team had not mentioned such a possibility) but I now realize that I probably caused more anxiety. That was certainly not my intent, and to those for whom that was true, I am very sorry. Most reactions, if they occur at all are mild, and easily handled by the onc team.
All the Best,
Elizabeth
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Elizabeth - please don't apologize for posting. You needed support, we all do, and we all take these things differently. I would hate to think that you would censor yourself in your time of need because someone might worry more. I can't speak for Calamtykel, but my guess is that she would say the same thing(?)
ckptry -- If you are on Taxol or Taxotere, you might also mention the "ingrown toenail" to your onc. I thought I had one, too, and it turned out to be the first signs of neuropathy. I'm now on (yet another) medication for it, but it seems to be helping.
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Elizabeth! You shouldn't have to apologize! It's a support board and whatever everyone's experiences are, we all deserve support and you deserved support when you had a rough time of it. I'm afraid I probably scared some people too, about having the port - but it was my experience and everyone is different. I'm sure your posts didn't contribute to anybody's fears - it's natural to fear any new treatment. My fears with taxol had nothing to do with your posts - they are mostly in my own imagination. I let it run wild with all sort of awful scenerios.......... I'm sure we're all alike in this!
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Met with Oncologist today and am good for Chemo #4 tomorrow (then 66.67% done!!!). He checked my chest cough and said he didn't really hear any weezy sounds so to him--that is good. He asked me if I want chest xray and delay chemo but I said No--that I was starting to feel better and we could go ahead. Basically, they will monitor me after this chemo and I'll have another check with Doc in a few days--check my blood levels again and see if cough is clearing.
Elizabeth--please don't feel bad about posting your SE--believe me, I have learned so much from this board--mainly questions to ask because I know everyone is different and reacts differently. I had pretty easy time with FEC--so Doctor said that although Taxotere is generally "harder"--he was hopeful that I will get through it with "minor" side effects--let's hope he is right
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Sweeny yes i thnk it reeks here, DH thinks its all in my head LOL i swear i smell something like rotten in my house... maybe i should buy a nose plug!
Wherria- That doesnt sound like a good dr... mom should shop around
RACHLE- i take taxotere and dont have any problems... Dont let the horror stories bother ya!
Elizabeth- DONT APPOLOGIZE i think hearing the word CHEMO in general is more anxity provoking than hearing some of the side effects
I enjoy listening to what ups and downs everyone has had becuse it reminds me we're all on the same journey here!0 -
lisa, I actually get my first Taxol on Friday. It's good to know that though. I always think of neuropathy in terms of numbness, guess I'm blocking out that it can mean pain. I've never had whatever it is before though so I am still blaming chemo;-) I'm doing weekly Taxol. I have some herniated discs so we're hoping they'll be less likely to flare up with the lower doses. They said I don't have to get neulasta or take steroids at home which is a plus, but the downside is instead of 4 visits over 8 weeks I have to go weekly for 12. I have to say you are amazing - this hurts -I'm complaining about having to walk with it so I can't imagine how you performed with it!
Carolyn
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Elizabeth please do not censor yourself here. If we all were to do that the usefulnessof these boards to all of us would quickly diminish. I don't understand why you even think you should apologize? Your message content was in no way anxiety provoking to me. I find reading various points of view enlightening and they teach me the many variations, SE for example, might take.
My Taxol may begin on Monday the 18th or on the 25th. My cold is getting a bit better day by day. My cough is still so powerful I would think I could pop out the needle from the port. Seriously, I have wondered about that.
Ginger
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Good evening chemosabes!!!!!
I was busy at the hospital and appointments today and I guessed I missed a lot!
First point of business: no one ever has to apologize for what is shared here. This is sacred ground and we are at our most vulnerable, scariest, soul baring time in our lives, at least hopefully. This is scary stuff and we are here to support each other emotionally to that end. Openly discussing what you are going through is part of coming to terms with it and, for that very reason, everyone should unabashedly share.
Iowa: I have scar tissue.
Rachel: nice new avatar and best of luck on tx #4...glad you made the cut!
Texas: you are the best! Keep smiling, kid!
Ckptry: I once left steamed broccoli in my mother's hardly used kitchen (never mind microwave) for over a month. No one could pinpoint where the odor was coming from and it was cleaning people and all kinds of stuff before it was found...super, deluxe gross!
Wherria: your mom needs a new doc! Also, come here and share and I also recently looked into volunteering with the healthy elderly. It keeps one busy!
I hope you all had a great day.
Happy trails-
Liz
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Did I tell ya'll I'm home? (chemo brain; I can't remember and I can't remember how to look at my old posts to see).
My onc pitched a fit yesterday and discharged me himself. He said "those infectious disease people should have had an answer for us two days ago." I'm on home IV antibiotics, which I didn't know were an option. The home health folks come out and show you how to do it.
I've missed a lot of posts lately so sorry if I've missed somebody's news. I ready to jump back in with my August friends! Rachel, good luck Friday. My taxotere is delayed, of course, since I've been in the hospital. It will be a week or two before I get my first one.
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GINGERBREW - I sent you a private message because I am also in Seattle - if you get a moment, check it out
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LadyinBama I'm so glad to hear you're home! Rachel, and everyone starting Taxotere drugs, honestly it hasn't been that bad at all. For sure the first round was the worst. I had a minor allergic reaction to the second round, but was able to proceed just more slowly. And the SEs sounded exactly like everyone else on the board. So nothing particularly weird. I did have my hands and feet in ice during each treatment though. Apparently this is important! Very best of luck to everyone who is starting it, but don't worry too much. You'll be fine. Well, as fine as this whole thing gets, anyway.:)
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bama- sp happy to hear ya got out!!!
SOrry so quick just came on line to let everyone know i'll be off line for a few days i will let ya know how 4th tx goes!!!! (its tomorrow)
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Sweeny thanks for the update on how your tx se have been. I am a bit delayed in first Taxol due to cold and cough.
Lady in Bama welcome home, you must be releived to be out of thehosp. WHo can actually rest in one anyway?
Jodi I will look you up.
Texas, I hope you are off to a good time.
Lizzy Mack thanks for elaborating on posting. I learn so much here from people posting no matter how they are feeling and letting it all work itself out over a bit of time and feedback.
GInger
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Well it's been a kind of rough (mentally) 24 hours. First, I "accidentally" took a peek at the warning sheet that came with my lavaquin (antibiotic - which I don't even feel that I need!) and just about had a panic attack. Good grief! Just the websites set up for lawsuits against this drug! I decided that I am not taking it anymore. I guess I will call my onc today and request to be switched to a zpac, which is what she originally said - I don't know why she put me on something as horrible as this.
All the symptoms that are dangerous are the same as taxol - neuropathy, etc. So how am I supposed to know if the symptoms are an antibiotic reaction or the taxol? UGH! Plus there is the risk for severe tendon damage on the lavaquin - and it can happen months later. I want to run again - no way am I taking this medication.
I'm just wondering why she put me on an abx in the first place. Yes, there's a little wheeze and occasional congestion but it's not all the time- I'm not hacking like crazy and for the most part my lungs and nose are dry. I'm just very unsettled about it all.
Secondly, I was up half the night with major jabbing pains - I don't know if it's the taxol or the neulasta. This time it's mostly in my legs and pelvis but sometimes shoulders. anyone else have leg pain on taxol? Or is it the neulasta? It's not "aches" like a flu, but jabbing mucle or bone pain..... Today is day 4, so we'll see. I didn't take any pain meds until I got up this morning and now that I'm up, it's not very bothersome anyway. Just wondering about this SE.
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Lady! Glad you're home. You're going to recover fast now I'm sure! My son was on an iv antibiotic when he was five for a spinal infection. I learned how to flush his pic line and do all that good stuff. It was easy once we got into a routine and the visiting nurse was great - she'd come every week or so. The antibiotic was in a little ball thing that I'd hook to his pic line and it would empty itself over about 20 minutes. Then we'd flush the line again. He did fine on it - I'm sure you will too!
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