Starting Chemo in Nov. 2011...anyone else?
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GrandmaV- So sad to hear wbout your battle with tinnitis. So much to deal wtih and the insufferalbe ringing in your ears. I can;t imagine that constant noise----I get it intermittently for a few seconds at a time--- scary but clearly managable. Praying yours will be short lived and that your hearing will return to normal sooner rather than later.
Gentle {{{HUGS}}}
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GrandmaV--I'm sorry you are having problems. I do hope they can do something for you to make it go away. You don't need anything added to your life right now.
I came home from the hospital today. My white blood cells are still low but my onc freed me. She said I probably caught the flu virus from someone during the holidays. I am going to take every precaution from now on. I am going to wear a mask when I am in public. I don't want another hospital stay and I want to feel the best I can during these treatments. I don't know what taxol treatments will be like but I have been told that I won't take steroids and I won't have the neulasta injection the day after. My first treatment is Tuesday. I am a little nervous about it.
I hope each of you have a good weekend with no SEs. Grandma V, I hope your tinnitus goes away permanently!
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GrandmaV - Let me start by saying that I really do understand how you feel with the tinnitis. My husband was injured by air hitting him directly in his ear 34 years ago, and he has had it ever since. He says that it is very annoying. It has caused hearing loss because he can't hear some things due to the roaring in his ears from the tinnitis. He has also had surgeries to place tubes in his ears (one doctor thought it would help when he first got hurt). And he has tried a few different types of things. One was a mast, which he described as just being another noise that would help drown out the sound the tinnitis caused. That was completely useless, just more noises. The last thing he tried was a hearing aid, but he couldn't seem to get it adjusted right and wanted to return it before the 30 day free trial was up. It seems like it was 4 or 5 thousand dollars and he is also very impatient. He didn't want to keep going in for adjustments and then forget to return it in time and have to pay all that money and not be able to return it and not like the aid. So...all that being said, he has gotten used to the tinnitis. He hasn't complained of it in many years, although if I ask about it he will say that he still has it from time to time. He does say that he doesn't hear it all the time. My point in saying all this is that although it may be unpleasant, I would hate for you to give up on the chemo because of the tinnitis. I know you have had a hard time with each treatment so far. Mine have been pretty rough as well. But even though I have had some pretty unpleasant and scary things happen to me as a result of this BC and the chemo, I will definitely finish out the treatments my onco has prescribed for me. I may complain about them. It is my right, and I feel safe venting on this board. I just really hope that you will try to do all you can to beat the BC. My onco said we have one chance to cure it, and it is now. After that, if it spreads to other body parts down the road, we can't cure it anymore. Of course, they would still treat it, but there would not be a cure at that point. I don't want to spend the rest of my life getting active cancer treatments. I have already imagined myself having a nervous breakdown every time I have to have a mammogram in the future. I am afraid I won't even hear the results or believe them if they are good. And if they are bad, I can't even imagine how devastated I would feel. Please talk with your onco on Monday, and remember some advice that my surgeon (whom I fell in love with after he saved my life) told me. When I saw him the day before I was to see my onco, he mentioned something about coming back to him if the onco wanted me to have a port for chemo. It blew my mind because I wasn't even expecting her to say I needed chemo, and the whole idea of needles completely freaks me out too. I was completely unprepared for what he was hinting. Anyway, I had done some reading, and I had found that cancer drugs come in pill form as well as IV form. And I had just assumed that if chemo was to be suggested for me, that I would certainly talk them into giving me the pills instead. My surgeon knew what I didn't know at the time, and that was that breast cancer drugs are only the IV kind. He could tell that I was overwhelmed, so he didn't tell me that. He knew the onco would break the news to me the next day anyway. But what he did say to me was this: "Don't get your mind stuck on one thing. Keep an open mind, and take it one day at a time." I think of that pretty often, especially when I am feeling like I can't handle another day or another side effect, or another anything related to all this. It really does help me, and I am sharing it with you, hoping that it will help you get through this too. Remember that the tinnitis can't be as bad as having your cancer come back. I hope I haven't offended you. I do believe that people should (and usually do) ultimately do what they want to do. And I certainly am not suggested that you don't know what is best for you. It is just that I have grown close to several of you by reading and responding to your comments on this board, and I can't help want the best results for you. Try not to worry too much, and hopefully this will resolve soon.
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Beth - I am glad you are home. We can't be too careful! Hopefully, things will go well with your next treatment, and you will be feeling better by the time it happens,
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TexasRose2127--and I thought that the steroids were to guard against fluid retention...my oncologist told me that! She said the amount I'm taking wouldn't cause weight gain, either. Anyway, i'm going to very clearly tell my oncologist that I want the dose to be reduced. I don't recognize myself, personality-wise, right now. I simply can't work like this...I teach at a university and this kind of rage and short temper could seriously hurt my evals and a contract renewal.
I lost 8 lbs on DD AC--and want to keep it off. According to my research today, reactions to taxol most often happen during the first two infusions--and I'm past that now.
Good night taxol ladies...good to know you are there.
Claire
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To Claireinaz and texas rose-- it is an oxymoron -- the steroids are and DO help with water retention but the edema type-- legs and arms etc. and at almost any dose, they may not make you 'Moonface" (my two doses didn't), they do increase your desire (HA, almost crazy NEED) for food and that it NOT water retention but pure calories. If you do not give into it (and let me tell you that is hard), the water retention part of the steroid eventually comes off.
I slept 11 hours last night after my chemo-- shortest infusion time I have ever had-- less than 3 1/2 hours!! yeah. I came home, slight headache, just tired but not bad at all. Decided my 16 year old could feed the horses and that my bed looked wonderfully inviting. I woke up at 5am...nice!!
But ladies-- I got my blood work back-- and Beth, this might interest you-- my WBC went UP..significantly. It was doing pretty well and then about two weeks ago went slightly under the range (a 0.1 under), last week it went up .2 but this week, it went up into the middle of the range!! The only difference is that I have been consistently taking my chinese herbs/mushrooms and increased the dosage for two days. THis week I plan on taking that increased dosage every day to see what happens. My son and hubby were both sick with the cold, sneezing etc all around the house for 2 weeks and I did not get it-- I am quite confident the different herbs I took did that!
GrandmaV-- acupuncture is well known to take care of many differnt (but not all) types of tinnitus. You may want to try that. I am sorry to hear of your pain.
Q
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Great news Qaatsi, about your WBC!
I haven't experienced any increase in appetite (knock wood), but I'm still backing off on the steroids. I do think we are so often over-medicated simply because doctors are afraid of a rare but possible reaction--and they are only protecting themselves in this litigious world we live in. Still, steroids themselves cause damage and are dangerous as well. If I haven't exhibited a reaction from Taxol after 2 tx, I don't see the need to shove them in my veins...
Claire
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Hi ladies- feeling strange today..had that 1st taxol on wed and maybe I am having a steroid crash or maybe it is fatigue or maybe I am depressed from all this crap..it just seems to go on and on and on..when will it all end?
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kelleysgroi- Kelly, so sorry to hear that you are in a "funk" today. Even though it's tough close your eyes & click your heels & say "it's ony temporary, it's only temporary........" You are 1 tx closer to the end of all these unpleasent side effects. SE's suck!!!!!!!!!!!!!
Gentle Hugs coming your way
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Thanks Rose- I just feel so unsettled today and just so ready to be done..
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kelleysgroi,
My MO told me that the fatigue from taxol will rear its ugly head on day 3 and 4. They are typically the most difficult for me re: fatigue and funk. I just came home, willneed to nap and then will feel like I could clean or build a house over the weekend. By Monday, slow down. I find if I pace myself , walk thru my life not run, during the weekend when I have the steroid buzz, then I manage better on Mon/Tuesday. I don't go into that partof the week already exhausted.
READY to be done doesn't even begin to describe it from here. DONE< DONE DONE and DONE. Still have surgery, more chemo and radiation and then 14 treatments with herceptin that will take forty weeks due to the way they are spaced. So a year fromMarch or so. DONE< DONE DONE I hear ya
Hope this helps,
Be well
Nel
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Kelley-- WATER!!! Drink WATER!!! if that doesn't help, drink water....lol
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Nel- thanks for the input..it could just very well be the fatigue/funk..at least I do not have the neulasta to add to the issue..the road seems so long doesnt it?? I have 3 more taxols..2 weeks apart and then my exchange surgery ..but we will get there..yes we will!
Quaatsi- I did realize I didnt drink much today..I am so sick of drinking..I'm so sick of eating ..it just seems like a big chore..Ive added lemon to the water, Ive tried crystal light, I tried powerade, I just am sick of drinking..lol
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Okay ladies, I went topless for the first time in bikram yoga today. First time bald in public, actually. The headscarf thing I wear was so suffocating in the heat and humidity that I tore it off near the end and then in the changing room I got a lot of support from my yoga community ladies. I don't know why I decided to now--just sick of trying to wear stuff on my head or my half-hairpiece with a hat.
I feel a little less wired from my Wed taxol tx--but my feet still look a little fat to me. By my count I've swallowed over 300 oz of water since Wed morning...you'd think the fluid retention would have worked itself out by now.
I'm hoping bikram sweated a lot of the steroids and taxol out of me today. Other than the above, I feel good.
Claire
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Hi Claire- Did not know that hydration helped with Taxol SE's. Thanks for sharing the info. You might want to check with your MO or a lymphedema physical therapist about bikram. I too had positive lymphnodes (6/10) & I just had an appointment today with a lymphadema physical therapist for preventive measures. I do nt have clinical lymphadema but all bc patients that had lymphnodes removed are at risk for developing it---- could be a week a month or years after the surgery. One of the things to avoid is extreme temperatures. Although she did not mention bikram she did say to avoid hot tubs, hot baths, sauna's.
Have you experienced any tingling of hands or feet or nerve pain or flu-like symptoms with taxol? I am starting dose dense next week, 4 tx every 2 weeks and am concerned about the neuothopy and flu-like SE's :-)
Hope all you ladies are having a good minimal SE day & evening.
My dh is going out of town (for medical reasons) & leaving me alone for 3 days & 2 nights for the first time since my BMX on OCT 14th. OH MY---I think we both can use the break! This is the 2nd week of my chemo cycle--so I am sure I can handle it. I have always been fiercly independant so it still feels strange to me to feel vulnerable. What the hell- I am beating BC butt, so what is a few independant days alone for a seasoned warrior!
Rose
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claireinaz,
Good for you. I have been going bald - 1/4 inch crew cut for about 2 months.I haven't been able to stand the wigs since the begining and have a scarf that I dislike even more. Comfort is my bottomline. Somehow I feel like the wig or scarf identify me as a cancer patient right away. Somehow my crazy little brain thinks going bald keeps me under cover. LOL
TexasRose,
Yes fluids,fluids fluids etc. They had trouble with my port last week,they think I didnm't have enough fluidin the few days before. I am good with taking in the fluids,then just seem to spend half my day in the bathroom and that irritates me. I have been alone a few times while in treatment. I amseparated and everyother weekend my dd goes with her dad and my ds is in boarding school in NH. Typically I love my time alone, but it has a different flavor right now. You willbe fine and do just great,particulalry if SE are minimal. My suggestion is to think and plan what willwork foryou. If I have too much time alone, the gerbil in my head runs in circles worrying. But if I make too much in the way of plans,I resentit. I am clear with folks that I may change my mind orlimit my time out. I am doing what works for me. And I am careful about pacing myself as I do tire a bit more easily and that is a piece I really need to work on. Used to doing 6 things at a time
Be well - the weekend will fly
Nel
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Claire- yay for you on going topless..my wig has not moved from its stand in the bathroom since I got it..I rely on baseball caps and I cant stand the scarves as they never stay put!
Rose- I had my first taxol on Wed and my finger tips and bottoms of my feet feel weird, although it could just be my mind convincing me that I am already having side effects..amazing how that happens. Like I said earlier, I just didnt feel right all day today..cant say flu-like just not quite normal- I totally understand feeling vulnerable with DH away..I have always been so independent and these days I feel so weepy and needy it is driving me crazy!
Nel- I think we all can relate to having so many things going through our minds..I just wish something other than BC and SE and issues and thoughts of when this crap will end would fill up the space
Thankful for all of you for the support and reassurances
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texasrose, i've lived alone since 1996 and i'm going through all this cancer stuff by myself. i remember being afraid to come home after chemo the first time, but i really didn't want to go to my sister's house or to my daughters's (although she never asked!). no one has gone with me to radiation, so i guess i'm used to being alone. i'm just like you ... fiercely independent, but been feeling very vulnerable since dx last may. it's a double-edged sword, huh? i think you'll do well two nights by yourself, especially since you're in your second week. just come on here if you get squirrelly!0
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Grandma V - So sorry to hear of your frustration and discomfort. I hope that the ativan helps you sleep - we so need our rest! I have to take the ativan to sleep the first couple of days of chemo, it really helps! Don't worry, when the noise goes away & I know it will, you won't need the ativan anymore - in the meantime make sure to use what helps!
Beth - I am so glad to hear you are feeling better and out of the hospital! Stays are never fun, but I am so glad you were well taken care of and your counts are getting better. Good luck with treatment this week & stay well. Since my hospital stay, I have also started to be much more careful with germs, etc. I have spent more time at home, and less in stores, etc. More time to shop when this is done, done, done!!
Texasrose - Try to enjoy your few days alone - watch some romatic love stories, enjoy a favorite meal! That's what I look forward to when I am alone for just a few hours at a time!
Yaya5 - Fiercely independent - YEAH! That is how we get through & kick BC butt! Anytime you need company, I'll come visit! Just let me know
Claire - You are brave! I have not tried topless yet, not sure if I can. The only time my head sees the air is at home. I do alot of hats & bangs on a headband! Thanks for the encouragement, maybe I'll try!
All, my onco says that the hair loss / stubble is different for everyone and in no way should I worry that the chemo is not getting to any possible cancer cells, I guess that makes me feel better. Also, I was wrong about thinking there was an estrogen blocker in the t&c, and that I should not be getting my period anymore. Onco says that the blocker is not given until after radiation, and that it may be I wont' lose my period (oh well, I thought I would be done with it!)
My SE's are manageable this week - I am 1/2 way through my 6 t/c's and know I can handle the rest - thanks for all the encouragement though this chart room - It is such a support!
Hugs everyone!!!!
Juanita
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Rose--My husband works 2nd shift so I am alone most of the time. My sister takes me to treatments. He did take me to my last A/C treatment. Of course it ran over the 2 hours and he had to drop me off at my brother's so he could get to work on time. When I was hospitalized this week, he didn't come to the hospital to visit. He has been sick also. I think he finally got some good sleep. I don't think he has slept well since I start chemo in November. We have grown closer during this time. Our children are grown and it is the two of us. I just wish I could stay awake and greet him when he comes home.
I am anxious about the 1st Taxol treatment on Tuesday. I hope my counts are up so I can get treatment. My wrist is swollen and sore where the IV was inserted when I was in the hospital. I am nervous about possible side effects of Taxol. Of course, I felt the same way before my first A/C treatment. I am going to enjoy the weekend as much as possible. This is the weekend that my appetite is back to normal and I eat...a lot!
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A big thank you to all of my amazing warrior sisters for the posts addressing my fears of being alone, taxol SE's & steroid fluid retention. Your positive feedback gives me more strength than words can express. I am certain that we will support eachother as we go through this journey, and for that i am grateful.
Love & {{{HUGS}}} to all
Rose
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Happy friday night to all of us.
RE: hydration--both taxol and steroids are excreted renally, I believe, so the more you drink (and get rid of it) the faster you'll relieve yourself of SE (at least that's what I'm doing).
RE: topless--I knew I'd get tired of hiding sooner or later. I just said "the heck with it" and tore it off. Wow, did it feel good after sweating for 90 min! I agree with Nel--I never even bought one scarf. I immediately thought of them also as identifying me as a chemo patient, and scarves aren't really my style anyway. I have a baseball hat with velcroed hair in it--and wear that when I don't feel like getting stares.
Texasrose--no need to worry...I've been a regular bikram practioner for over four years now (3-4-5 times a week). Bikram yoga actually turned my life around (not just physically), and to stop would be hell for me. Although I've had lymph nodes removed, the onc. at MD Anderson told me I was relatively low risk because of my fitness level, weights routine, and body mass. My own onc. told me to keep doing what I'm doing....Anyway, I will not let the threat of something that might or might not happen keep me from what I believe probably saved me from my cancer getting any worse. At the very least it's kept me active throughout treatment---and my yoga community is one of my important support systems through this, too. (sorry to get on my platform about yoga! I'm kind of a believer if you can't tell
)Bethu77, I was so anxious about the first Taxol I cried (well, I cry every time I'm getting chemo usually at some point--it all catches up with me I think, on those days). I kept waiting for SE as with AC and they never happened. I hope you'll have the same experience.
No neuropathy (knock wood) but I'm taking glutamine, B complex and have some acytyl carnitine coming in the mail soon.
Goodnight all--
C
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claireinaz- Just being a little overprotective of one on my "sisters". Interesting that MD Anderson said you were at low risk because of your fitness level. I am also very fit and continue weight training, eliptical, stretching & yoga. I am receiving tx at Johns Hopkins and I asked the MO about my fitness level impact on my bc. He said I would bounce back quicker than most from the tx but would not have an impact on my bc. I also aked the lymphadema specialist & she said it is unknown why some women get lymphedema & others do not. It is always refreshing to hear alternative opinons- cause I do not believe there is a right answer; all of our bodies are different. I love your attitude about not worrying about a threat that may or may not happen----- I'm in!!! Thanks for the good advice!
Rose
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bahamamom, I've been trying to think how to respond to your post. I realize you mean well. But I really don't think you understand what I'm going through. I feel for your husband, having this for so many years, but just like he can't fully understand what your're going through with your breast cancer, because he doesn't have it, you can't "know" what this is like. I am so torn as to what to do right now. I want to fight my breast cancer and finish my tx, but I'm scared that it will make the noises in my head worse, and even though they're not as bad today as they were last week. If they return to that level (I would liken it to the level of a vacuum sweeper in your head) my quality of life would be nil. I'm sure I would eventually go insane. I've lost my confidence in what I'm doing. I'm totally at the mercy of this noise. When it's loud I can't concentrate, its louder than than the TV, it makes me feel mean. I don't know what to do. I pray it goes away and I can continue with tx. I talk with my Onc. Monday, even though he can't do anything for tinnitus, maybe he can come up with txs I can be comfortable with. I just don't know. I'm totally at a loss as to what to do.0
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GrandmaV- that sounds terrible..I pray the noise stops and you find some peace and quiet
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GrandmaV ~ I honestly don't have any words that can help you make your decision other than to say that after 30 years of tinnitus, I truly can understand the feelings you are having. For me, it was not a choice to try and stop the tinnitus as it came upon me totally spontaneously. I remember so well sitting in a staff meeting in the school library when it started. I was 29 years old and had not ever even heard of such a thing. I do remember going from doctor to doctor trying to get relief and when I said I thought I would go insane from the noise, I was told that wouldn't happen. Did I believe it? NO! But as of today I think I am reasonably sane. I WOULD NEVER presume to tell you what to do about your BC treatment as that is a totally personal choice, but I hope you will ask a lot of questions about the usual course tinnitus takes when it comes on as a SE of chemo. I truly hope you are able to finish your current treatments or that the onc can come up with an alternative. You are in my heart and prayers. Linda
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Linda, Thank you, I hadn't thought of asking that. I'll add that to my list of questions. I know you understand how I feel and the decision I have to make.
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GrandmaV, I've been reading your entries and can not imagine what you are dealing with. And there is always an element in this whole battle where we are alone to some extent. I am SO thankful for all of you who have such similar circumstances and we can identify with each other better than most. Yet, at the same time, we are all individuals reacting so differently to all that we are having thrown at us. This whole thing sometimes plays a headgame with me.
I will be eager to hear what your onco says on Monday and will pray for relief for you and clear direction as to what you should do.
I love hearing all the encouragement and receiving all you have offered me. I also get heavy-hearted hearing the difficulties so many are having. I'm having my share of them as well. This is such a different experience for each one of us, and yet the same. I'm at the end of round 2 of A/C and already dreading next Tuesday, except that I will be that much closer to being done! I just know I will have about 6-7 days of feeling like crap, and then slowly have a few more days of relative normal. Messes with my head...this week has been more emotional. I also feel like I'm 'nesting' all over again when I do feel good since I can get things done. I am not normally a 'sitter' by any stretch!
Texasrose...how has your time alone been? Thinking of you.
As far as 'topless', I think it's great! I wear mostly hats. Wore a wig once and it drove me crazy. I've been gifted with some fun hats and I love them. Anyone I know, knows what I am going through. Anyone I don't know, they figure out what's going on quickly! Today, at Walmart, wearing a hat...a lady standing in the same aisle as I was stopped me and asked if I was battling cancer...she is a 5 year colon cancer survivor and she was SO encouraging to me. Took me by surprise, but it was lovely at the same time.
ALSO, I don't know what bikram yoga is, but I am just starting a beginner's yoga at home. I'm not in great shape, but have always walked for exercise. My girls do P90x and love the yoga portion, so they have me motivated to start this! I will let you know how it goes. The stretching appeals to me right now.
Restful, QUIET sleep for all.
Andi
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Andi, Thank you, I know you and others are having a rough time, too. I've been a little selfish lately, just trying to deal with this. Physically I'm doing pretty good. If it wasn't for these noises I would be doing great. I hope you can get through your next tx with minimal ses.0
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Evening Ladies.. been off the boards for a bit, My onco suggested I take glutamine for neuropathy so DH purchesed the powder for me..yuck was hard to get down so I opted for a chew.. bad idea. within 3 hrs I broke out in hives from the top of my head to the tips of my toes. 5 days later and I am feeling semi normal, but have developed a cough. Yesterday at my followup onco appt my lungs were fine, however, I felt like my broncil way was irritated. So here I am with a cough, feeling like arse. I am hoping it's just leftover from the hives..
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