August 2010...anyone starting chemo besides me?!
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Lisa & Rachel: Thanks for the encouragement. I wish my appetite would leave with my tastes buds. I'm hungry, but everything tastes like crap, so I don't want to eat. Iago, I had a salad with chicken for dinner. Hope it helps with my protein levels and with my constipation problem.0
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Lady in Bama,
I also wanted to let you know that the SE's do subside,albeit at their rate. I have my tastebuds back. I found that while they were off duty I ate less and less because the food tasted either like nothing or like some chemical such as shoe polish.
I am less breathless, it is still there but not as serious. My fingers are still numb and hurt, my feet are stil numb too. I feel a bit better in general. You will too, it is just getting there that is difficult.
I hope you feel better soon.
Ginger
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I have a ? for the ladies getting hair regrowth, does it seam to be coming in any different from what you had? I'm getting curious. Thx
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Omaz - fingers and toes are still numb. :-( But I have high hopes that it will subside.
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LadyinBama Constipation from chemo was never solved with eating roughage for me. I was eating the salads, beans, dried apricots, probiotic and Milk of Magnesia (twice) you name it the first time and it didn't work. I still had to break down and do the Metamucil. So far the Metamucil has done the trick each time after 2 servings.
Have to admit that yesterday at 4 all of a sudden I felt better. I didn't really think I felt that bad till I felt better. Went on a 1 hour power walk. The day before I barely did a 30 minute walk and felt like I was a walking zombie. I didn't realize how bad my distance eyesight was on Thursday either till Friday. Yes these SE are just temporary. Granted my fingernails still hurt and I'm still a little sore but all is very manageable.
My taste buds and sore tongue lst time started on 6 though day 9. The taste bud thing wasn't too bad but the sore tongue was a real PITA. If it does happen this time I hope it's only for 3 days. They had me suck on ice during the Taxotere to help alleviate this issue.
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lago- I think the power walks definitely help! It's hard to get out there and do it. We have a hill that runs down the road from our house. I used to walk down the hill and run all the way up it and when I got to the top, I'd cross over onto our property and keep running up hill until I got to our driveway. I can't do it anymore. I can only run about 1/4 of it and have to walk the rest. It's coming back though. I've been going "running" and when I can't run anymore, I power walk. As long as I'm sweating and my heart rate is up for 40 minutes, I count it!
My shoulder is getting better. Lesson learned - do NOT rush to the doctor with every ache and pain. It is costly financially, exposes one to possibly unnecessary radiation and just causes undue stress waiting for the results.
My chiropractor could have told me it was just muscular. Now I can sleep on that side and stretch it much further.
I'm hoping to get some sun today. don't forget in the winter to try to get a little sunlight on the days that you can; even if it's sitting in a window. The other day I sat in the window with just a camisole on and my hat off to get as much skin exposure as possible. We need the melatonin and also the vitamin D this time of year in the Northern Hemisphere when the sun is so far from the earth.
Hoping everyone has a good day. It's 25 outside this morning but I'm hoping to take some photos with my new camera for listing some things on Ebay and in my stores.
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Well hello Chemosabes. I'm back! Sorry to have been so absent lately. A few weeks ago I was opening a box on my desk and heard a loud clunk, and turned to realize that it was my computer I had knocked off my desk. So it was in the shop for a while, and sent down the spiral of computer detox. I really should have gone to an addiction recovery center to get through the shakes and sickness that followed, but I was too cheap!
Anyway, I'm back, and while I have been thinking and wondering about each of you, I still have not caught up on all the posts I've missed. I think I have six pages to read! And I will, but for now I'll give you an update from my corner. I'm three weeks post last chemo, and in some ways I feel better and in some ways I feel worse. Mouth sores - gone. bad taste- mostly gone. nausea - almost gone, but still needing Compazine once in a while. Headaches - gone. spasms - gone. Hair - still gone. Shortness of breath - mostly gone. Neuropathy - worse. Lymphedema - worse and continuing to get worse
. Muscle pain - worse. fatigue - worse. Dry skin/eyes - same. The neuropathy and lymphedema worry me the most. My occupational therapist no longer says she is optimistic about the swelling going down. Instead she just says, "We;re doing everything we can, and we'll just have to wait and see." I know am wearing layers of bandages over layers of cotton and layers of foam. So I look like half of a linebacker (with pads on!). I have about three shirts that will fit over this monstrosity, and my arm is all but useless to me now. And the neuropathy has gotten worse in my hands, and quite a bit worse in my feet, and now I'm feeling it up my lower legs some of the times. The other thing that is far worse than when I was in the middle of chemo is the pain and fatigue I feel in my muscles - leg muscles mostly. Just a short walk to the mailbox makes me need to sit down. And stretching exercises are excruciating. I had hoped I would feel better by now, and I certainly didn't anticipate that some things would feel worse, but I am still hanging in there!
On a more cheerful side, we were visited by my sister and brother-in-law for five days and had a marvelous time. We laughed A LOT and talked about everything under the sun. We targeted difference Chicago-style restaurants which they loved, did touristy kinds of things which they also loved. (I paced myself.) But most of all we just enjoyed being together.
I will read up on what's been going on for all of you, but in the meantime, I hope you are doing well, those finishing chemo, those who've gone on to rads and anyone in between.
It's good to be back, my dear friends!
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Wherria it is so good to see you back here! I'm glad to hear that many of your symptoms are improving and I am hopeful for you that the ones that are lingering/worsening will still get better with time as you move on past your last chemo.
Thank you to Lisa, Rachel, and Ginger for giving us an update on the improvements post-chemo. I am happy to hear that you ladies are feeling better and looking forward to joining you in the post-chemo land eventually!
DH has come down with a cold and now I'm hoping I don't catch it. I was thinking the other day that one of the pluses of having chemo in winter rather than summer is that wearing hats is much more comfortable in the winter. I cannot imagine wearing hats every day in the middle of the Florida summer, my hair had better be back by next summer! But I guess a minus of getting chemo in the winter is the risk of everyone around you getting sick with colds or flu!
Happy Saturday to all, I must admit I'm a bit unsure of what to do with myself since there is no college football today! I guess I'd better get to work on Christmas shopping!
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But jsw19 you look so cute in you photo. Do you really need a hat/scarf this summer. Maybe some really good sunscreen.0
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Good morning chemosabes and radicals: I hope this day finds you all well-
Ginger: so good to hear that you are feeling a bit better. That is progress. Good to hear your taste is coming back. I just had eggs that tasted like something indescribable!
Calamtykel: that sounds so pleasant to sit by the window just absorbing a little sun! Good stuff. As for the workouts, good for you! That is so inspiring that you are right back out there. I mentioned I lived nearby a small ski resort and, needless to say, there are some pretty good hills. Up the road there is a steep incline and it has been my goal to walk up it backwards for a while! I am hoping January brings me the opportunity to do just that! I am so looking forward to workouts again. I am also glad to hear your shoulder is doing better. Good for you, Kel. I am glad it is all working out for you and that it seems to have been nothing serious.
Wherria: I am glad you are back! I was getting worried and am glad to hear it was just the computer! Sorry to hear the SE are not getting completely better but there are some bright spots so therein lies hope. That is great that you had visitors and I completely laud your ability to keep up with them, even with pacing yourself, the very notion tires me out! I agree on the walk to the mailbox. It is so sad to have to sit down when I get back from a stroll up hill back to my house! It is good to have you back. Continued progress with feeling better and no more knocking the computer to the floor!!!
JSW: I agree getting chemo in the winter has it's perks but the flu business is renting space in my head! I am isolating myself for Xmas and NYE because I, in the end, decided against the flu shot as I have never had it in my life, and don't want to run the risk of getting sick with just 1 tx left. I certainly hope you can avoid getting your husband's cold.
Christmas shopping?! I was so lazy a few days ago, I went to CVS to get my nephew an Itunes card for his birthday and they were out of the $25 and $50 cards so I got a $15 because I was TOO LAZY to go to another store! I hope by Christmas shopping you mean online? That is what I should have done anyway but I got ambitious and I really wanted to mail a card. Alas my best laid plans...!
I am going to try to get my file cabinet cleaned up today and get a few other things done. I have my list, as I do every day, and hope I get some things accomplished today.
Good day to you all-
Liz0 -
I had my first post-chemo massage yesterday and it was so good. Today, I am feeling a little achey but know that it is the massage. I am going to try to get massage each week while I can as I'm not sure how long I will be able to lay on my front for a massage during radiation. I met up with a friend this week who did radiation and she was OK up until the last couple of weeks--then it hit--skin problems and fatigue. I know that everyone is different but she has very similar skin to me. My hubby is away this weekend with my youngest son, so just me and my oldest--heading to sister's for dinner--so I don't have to cook!!! Try and get some more xmas shopping done. Even though I am feeling pretty good--I still don't have same level of endurance as before--get tired pretty easily.
Hope everyone has a great weekend!
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Tastebuds: Those having problems might want to try fresh fruit. I hadn't tried eating fruit because sweets tastes weird to me. But tThe salad I ate yesterday had strawberries in it, and they tasted half decent. So DH bought me a big dish of fruit this morning and it actually was good. Watermelon, strawberries and pineapple especially had taste. Cantelope and grapes were so-so. He made the kids hamburgers for lunch, and I could actually taste something similiar to beef. So I told him I guess I'll live on hamburger for the protein and fruit for the other vitamins until other foods start to taste/appeal to me again.
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Good morning pals! I have a question for those of you who have been done with chemo for a while. After my last chemo (3 1/2 weeks ago) I had the usual low energy level, shortness of breath, etc. But it starting getting worse instead of better. Now I am at an all-time low. I seem to need a lot of naps, though while I was in the middle of chemo I was never able to fall asleep for naps. And now I feel even more tired than I did while chemo was still going on, and that's saying a lot! Also my muscles ache and burn much more than they did during chemo. Like in the last week and a half, it's gotten to the point where I can barely climb my stairs at all, and even just getting up out of bed makes my legs burn and get very week. Many times, I have almost fallen down from my legs just giving out under me. The same is true in my arms, it's just less noticeable because I don't do as much with them. Have any of you who have finished chemo noticed your fatigue and/or muscle pain and weakness getting worse? I read somewhere that post-chemo fatigue can be worse than what you experience during chemo. Has anyone heard of or experienced this? I'd appreciate any responses. I see my onc on Wed. and will of course ask about it. But it's really frustrating. I was expecting to feel better, but in some ways I feel sicker than I did, or at least much weaker than I did during chemo. Thanks.
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Wherria - When I read your post about your muscle hurting and stretching hurting I wanted to tell you I have the same thing. I am about 3 weeks past last one. Stretching feels like I have worked out really hard when in reality I haven't done anything! I haven't had the weakness as much though, I was wondering if maybe your red blood cells counts might be low? Have you had your blood checked since the last chemo? But I do have the tender muscles, am very tired, can't walk very far without getting tired. For sure I couldn't do the power walks with lago and calamtykel, I'd just be the little dog running along behind barking 'wait for me, wait for me!'. Glad your are back wherria!0
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Iago Thanks for the compliment! That photo was taken when I first buzzed my hair but I have lost more since then. I am starting to get some of that peach fuzz people talk about so I am hopeful that true hair growth will occur soon.
Lizzy Yes, I was referring to online shopping but I never even got around to that. Perhaps later today. Yesterday I went out to lunch with DH and to the grocery store and then just watched tv, knitted, and read a book for the rest of the day. Nice and relaxing!
Hope everyone has a good day today!
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Wherria--I am almost 3 weeks post last chemo and feel somewhat similar. I started walking each day and by the end of my walk (starts off fast but quickly gets slower), I am out of breath. I used to run about 5-6km every other day so it is a little disappointing. I also feel strange going up stairs--feels like I have worked out on stair climber. I had appt last week and my blood work was "stellar" basically, I am normal on all areas. However, the Nurse reminded me that I am "baby chemo graduate" basically the way I am feeling is normal, the chemo is still in many cases in your body and post-chemo can be just as hard as between the chemos. She reminded me to take it easy, eat what I could, drink what I could--strength will come with time.
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Hi Wherria - I don't post too often but am on the site for a couple of hours every night soaking up info. I am 3 weeks post chemo (started in August) and I feel the same way - leg aches, walking up the stairs out of breath, and my collar bone really hurts. Since my BMX is scheduled for a week from Monday, I am trying to get a lot of things done (cleaning, painting the kitchen, making sure I have everything) and am starting to freak out at how will get it all done. I started a zillion projects I want to finish as I am so afraid of possible limited use of arms after surgery! I think I am doing it to keep my mind off of the upcoming surgery and I have another PET scan tomorrow. The BMX recovery completely freaks me out. (Not so much the thought that I am losing my breasts, which is a bummer, but how am I going to heal, do things etc. My daughter will only be here for 4 days then it is just me!) Anhow, sorry to go on about myself, I am just getting so nervous. I just wanted to let you know physically I am not as strong as I thought I would be after last chemo. God Bless! Oh yeah - what caught my eye too was you live in Winfield! I used to, and my children were born there! Great town!!
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wher-- have you had rads? I know that can really zap the energy!
I'll add my set of problems to everybody else's: My port is really bothering me - much moreso than when I was on chemo.
I go to the onc tomorrow and I'm going to push to get it out. I know she wants it left in for a while, but I've had it. There is still that one little dot that hasn't healed and now it's leaking clear stuff whenever it gets swollen especially if that area softens up like after a shower! This just cannot be good. I'm pretty sure there's no infection, but it's a freakin' open area- does nobody see the problem with this?? Obviously if it's draining, there's a problem! Just hoping my oncologlist nad i see eye to eye tomorrow. Tomorrow we also talk about tamox............. As for feeling tired - did you know it takes about 120 days to regenerate all your red blood cells? We sort of think we're done with chemo and then that's it. Just rest a lot - eat well and hang in there!
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Cal - I hope your doc says yes to port out. I wish I could get mine out. I notice it most when I sleep, on that side is just bugs me and if I move wrong it feels funny. I have such a long time to go, till next Aug-Sept, I just can't think about it. I hope you get yours out!0
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Omaz- I wouldnt' mind keeping mine if it didn't look so sore and nasty and if it weren't draining and stuff. Something's just not right. And if it didn't hurt. It really wasn't bothering me too much while I was on chemo, but now that it's not being accessed it's gotten more and more sore.
the whole muscle hurts and my arm motion is limited. Not immobilized, but I can't lift my arm that high, etc.I'm a little scared about my app't tomorrow. It's like "the next phase" if that makes sense...and it's a little daunting.
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Cal - One thing I have learned is that I can't think too far ahead or it gets overwhelming. Just what is next and THEN the next thing, not next next next. I would like to have everything planned out, as if that would give me security but it doesn't work that way! Your port does sound like something is wrong. I wonder if you have like an allergic reaction to the materials. I remember that you have talked about that spot on the incision several times. I 'll be interested to hear what happens at the appt with the doc. Best wishes!0
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Mmof2, Omaz and Rachel, thanks for your posts. (and Calamty, no I haven't had rads). I know it takes a long time for us to get over the chemo and for our bodies to feel better, but I guess the thing that concerns me most is that I feel worse. I told my husband last night, that aside from the nausea, I felt the worst I've felt since chemo started. The muscle pain and weakness and the neuropathy are all worse than they ever were even in the middle of chemo. I know the effects are cumulative, and it would be no surprise if the last chemo hit me the hardest, but the muscle stuff didn't get this bad until about a week ago which would have been exactly three weeks since my last tx. Doesn't that sound strange to y'all?
I see my onc tomorrow, so I'll see what he has to say.
Cal, I hope you can get your port out, and I'm sorry it's bothering you so much. The drainage doesn't surprise me though, because my uneducated guess is that it's probably just draining the fluid that your immune system is sending to the area as it would even without the tube there. And it's probably also lymph that your system is sending in response to a foreign body, and since that foreign body happens to be an open tube, the fluid just drains out. I don't know if that even made sense.
momof2, how long ago were you in Winfield??
Hope everyone has a good day.
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Dear All,
I'm new to this discussion thread but I did start chemo in August (six rounds of Taxotere, Carboplatin, and Herceptin) and I finished up right before Thanksgiving. A friend of mine who also started chemo in August told me you were an active and awesome group, as the comments above prove, so I thought I'd post a comment and ask the chemo question that's most on my mind these days.
I've been fairly lucky and experienced relatively few, relatively mild side-effects during chemo but the end of chemo has hit harder. I can certainly identify with others' comments about feeling weak and getting out of breath when I exercise (even climbing gentle hills or taking two flights of stairs), but the side effect I'm finding even more bothersome and worrisome is the considerable swelling of my arms and legs. I saw a lymphedema specialist who was worried about the swelling of my left arm, where 9 nodes were removed. I got a compression sleeve and glove and learned to wrap my arm at night. I'm now much less worried about lymphedema. IF I have it, it seems -- at least right now -- very manageable, as my left arm looks almost exactly the same as my right arm.
But, my legs and feet are really swollen. My feet look like I'm ten months pregnant. My legs are thicker and the muscles are less visible than I think I've ever seen them. When I weighed myself, my weight was up at least six pounds in the last week (and nearly ten pounds total since the start of chemo). My weight has been very stable for decades, so this is really out of (body) character. I'm wondering how much of this weight is water retention and what I can do to get rid of the swelling as it makes my feet hurt and makes my legs so heavy and it looks unattractive, especially to me, I know. The diuretic I've been prescribed seems to do very little good.
I'll see my oncologist later this week, but I'm afraid he'll just say, "Oh, it's a chemo side-effect that will go away eventually...."
Have you experienced similar side-effects? Have you found anything that reduces the swelling?
Big, big thanks in advance for your comments!
Katherine
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Hi! I haven't posted in weeks but I try to read when I can. You girls are hard to keep up with
I'm just a bit over 6 weeks pfc and feeling really good. Fatigue is lessening and the hair is growing! I started Tamoxifen a couple weeks ago and so far so good. I had lots of hot flashes through chemo (chemopause) and was afraid they'd be worse with Tamoxifen. Surprisingly, my hot flashes have almost gone away entirely. I'm wondering if that means my period will be returning soon?Wherria - You're just a few weeks behind me and we both had TC. I too had the muscle aches and from what I've read it's from the Taxotere. It was worst for me from weeks 3-5 but now I'm feeling much better. Not totally gone but getting better everyday. Hang in there, this too shall pass!
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JoyKK - I also had TCH and had the swelling mostly noticably in my arms. Because of scheduling I had 4 weeks instead of 3 weeks between tx 4 and 5 and I noticed that just before tx 5, when 4 weeks had passed, I could finally start to see my forearm muscles again. Then with tx 5 they disappeared with the swelling. So I am thinking by week 4-5 post treatment the swelling might start going down. Interesting that the diuretics didn't work well. I think the swelling is due to the taxotere and its effect on the small blood vessels that cause them to be leaky or something like that. They have to repair themselves.0
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Hi everyone,
I'd like to second the comment about "taking things only in small steps". My last onco appt was all about that, I was worried about wieght loss (I gained 20 lbs during chemo!!!!), I was worried about a return to work date, I was worried about tamoxifen, my lack of sex drive, my puffy face, where I'll be in 20 years. You name it I was worried about it, still am to a certain degree. But my onco said- "slow down everything, your expectations and your mind". To some degree she's been totally right.
On puffiness and weight- I've got a lot to lose and I too can't tell if it's water retention or actual weight. I wasn't able to even do 20 min of exercise. So I broke it down into two 10 min throughout the day, now I'm up to 2 fifteen minute sessions. THis helped immensely. I didn't feel so down about not being able to do anything. I haven't stepped on a scale yet. I'm trying not to make that the point of the whole thing.
Wherria- I was really, really, tired after my last round for almost another 5 weeks. Muscle aches, feet cramping, overtiredness. Good to check in w your onco but I think it sounds normal.
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p.s Welcome JoyKK! This is the greatest thread, glad to have you here.:)
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Good, good, good morning chemosabes and radicals!!!! Top of the morning to you all!
My apologies for my absence this weekedn as I was sleeping off tx #5.
Catharsis: This weekend I had a catharsis relative to what I now deem my "chemo hangover." Although I am not done, chemo was "something" to get through, to get by, to put behind us but now, I find myself dealing with, and confronting, the very issue that tossed me into chemo. The past 10 months have been a whirlwind and now I am living with the idea that I am essentially sleeping "within" the enemy. BC has become a part of my life forever and as I ponder going back to school and continuing on with my education to become a nurse, I am reminded if I "don't" do these things and continue living my life, I am no longer living. Now, an awful lot of people with *no* reason to stop living do anyway. In the end, there is never a reason to stop doing whatever it is you are here to do and even though our collective bc dxs are startling they are just a blip on the radar. We must continue on and live our lives. I am, however, starting to fully assess the last 10 months and it is a sobering event!
Dreams: I keep having crazy dreams I am at flea markets as they are closing up! I can count on 1 hand how many flea markets I have been to! Weirdo dreams...oh yea, my mind also reconfigured the entrance to Grand Central and it is far more lush with a cascading, meandering, shallow staircase that is just decadent!
French toast: I actually made cinnamon French toast yesterday with the good, old "Wonder White" of yesteryear and it was good! No syrup but at least it did not taste like poison! I am sure we are all on brown breads of some sort and I have not had white in years and years but it was good as French toast!
JoyKK: welcome to our thread! It is a good, supportive group. I hope you find some answers here and, if not, at least some solace
Weight: don't forget, our bodies use water to heal so I would not be overly concerned about weight in the post 8 weeks after chemo. I am sure our bodies are holding onto water for comfort after that gross, poison assault! This, however, is not meant to impune the experience of those of you dealing with LE. Totally different ball game.
Zumba: if any of you like to dance and enjoy the occasional salsa or samba, this is for you! I am just doing the practice steps now in anticipation of being able to workout more in January. More to this point, however, it is a nice, fun workout for indoors. I have always enjoyed dancing and it is just a fun workout.
Adey: hang in there, woman....we only have 1 more!!!!!!!
I am going to try French toast again......! Good day to you all-
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Lizzy- total agreement about the post-chemo hangover. I have spent much time soul-searching over the last few weeks post rads and post chemo. I'm in the right job for sure, but have I made the most of my life? I've started cultivating (and this is going to sound cheesy folks, so get ready...) more love. I smile at more people, I try to connect on a less superficial level, I try to feel more. When I finished rads/chemo I felt like I was so raw to everything. As if my skin had been peeled away and my sensations were heightened way beyond pre-cancer. I think it's a different plane of understanding and I'm trying not to let go of it. I'm trying to use it to sort through this messiness of cancer and of life. So far, it's been working. And dreams too for me have been WEIRD, and vivid. To me, just another layer of this heightened sensation of living I guess.
Has anyone had this reaction?
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JoyKK--I am also having bloating but mainly in my face, neck and abdomen. I had appt last week and basically--it is a side effect of Taxotere that some people will get worse than others. They didn't prescribe me a diuretic--they said it would go down by itself. It's hard to tell myself but my hubbie was away this weekend with my youngest for hockey tournament and he mentioned that my face looks less bloated....good sign. They said it may take up to 8 weeks. I have gained weight through chemo but my Nurse and Onc think it is water weight along with actual weight. I am walking every day--but have less energy so can only go so far. This weekend I was so busy driving my oldest around to his various social/hockey obligations that I am taking it easy. Dentist tomorrow for first appt since chemo started. I do feel much better than on chemo but certainly not anywhere like before... just need time.
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