Cytoxan Taxotere Chemo Ladies- February/March 2013
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MinusTwo - Thank you. Everything I do gets run past my MO first. Do you recall what you were told to stop taking?
SchoolCounselor - I think I can tell from your posts how you're feeling. When you're OK you post more and when you're not you're quiet. Do I have that right?
Audra - Thank you. I chose the name to fool myself into thinking I can take on the biggest challenge of my life. WW has a better ring to it than FrightenedFool. I agree with you that what is most important is to take this one step at a time and make the decisions that are in the best interest of my health. So far, as difficult as it has been, I have not turned my back on me. I think that is my greatest fear: Self-Abandonment. And so, if it is what I need, the neulasta will happen and I will come here to complain about how much I hate it knowing you gals understand.
QuirkyGirl - Big hug back at you! This may be naive but the evil big d...it that diarrhea?
Today I ran five miles with my dog trying to get in my last bit of enjoyment. My tongue feels funny and food has little taste. My thighs are achy. I feel like this is the quiet before the storm. We have theater tickets for Saturday night and I hope I can make it. My husband has missed so much fun stuff because of my cancer. We were supposed to be in Morocco now. I simply have no ability to plan my life since I got cancer.
I look to the future when I will emerge a better person.
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The 'frightened fool' made me literally laugh out loud! LOVE IT!
And run for me..I haven't worked out since my mastectomy! Actually since diagnosis as I was paranoid that moving my arms and pumping my blood/etc. would cause tumor to spread to lymph nodes...paranoid...
I usually work out 3x/week my whole life, was aerobic instructor and super tom boy growing up...so this couch potato thing is VERY odd...but I have read a lot of books...:)
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Bluegrassharp- I do recall becoming progressively more out of breath and easily tired during Rounds 4-6. Just to walk a short distance made me huff and puff. My pulse would also race and was rapid. My onco told me that it was a side of effect of this chemo regimen and to continue to take good care of myself ( eat well, rest, exercise). Since I'm on a blood pressure medication, I also had a check up with my internist who was concerned about the rapid pulse and my being out of breath. I had a thyroid blood panel done as well as the usual blood lab work. To my knowledge, the lab results came back fine and no problems with my thyroid were found. I don't know if this helps you or not; but just to let you know that you aren't the only one who has become short of breath during chemo.
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So get a load of this. The chemo Nurse Ratched wants me to attend a special exercise program for chemo patients. I explained that I run half-marathons and lift weights and now I'm being sent to a remedial gym class. My new goal in life is to prove her wrong.
Audra - I had an occupational therapist after my TE placement and she helped me greatly with range of motion. I may also get a physical therapist as I feel pulling on one side. It is strange but I am actually running better with the TEs in place as if I have my own built in sports bra. From everything I've been told, it really is best to try to get a little exercise everyday if we can. Are you able to walk outside for a few minutes each day? The fresh air and sun greatly improves my mood.
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Bluegrass - I too had shortness of breath & MO sent me to a heart doc. I too had everything tested including EKG & Echocardiogram. Other than being a little anemic, I got the same advice as Melrose. It's a side effect so just take things slowly & call if I got dizzy.
Warrior - I was told to stop Omega 3-wild salmon fish oil, Vit E, and Vit C. I read somewhere else that BC patients should never take Vit C but haven't researched myself. Also stopped my 'asprin a day'. I continued to take Centrum Silver, Citracal w/D x 4, additional 1000 mg Vit D, and added 100 mg B-6, 1000 mg B-12 and Acetyl L-Carnatine. Now that chemo is over I'm going to add 5000 mcg Biotin per my podiatrist. I found it interesting that the advice from my MO sometimes was in conflict with the advice from the infusion nurses.
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FDM -- my PT gave me 6 GENTLE SHOULDER STRETCH exercises to do 2/day. They are helping me a lot to counteract the muscle/tendon/ligament contraction that the chemo seems to be causing:
1 Lying flat on your back, clasp hands on tummy, thumbs up. Raise arms straight up over your head and back as far as comfortable with thumbs pointing down toward floor over your head. Return hands up over head and back to tummy. Repeat 15 times per set, 2-3 sets per session, 2 sessions per day. (I can't possibly do this much -- I do a morning and evening session, and do only one set each time!)
2 Lying flat on your back, stretch one arm straight back beside your head with elbow near ear, as far back as comfortable. Hold for 30 sec -- the last 10 secs are the important part. Use your other hand to help raise and lower the arm as needed. Repeat with the other arm. Repeat 2-3 times per set, 1 set per session, 2 sessions per day. (Again, I do a morning and evening session and only 1 repetition each time.)
3 Lie on your side with small towel rolled to support your elbow (upper arm resting on top of your torso) and your forearm pointing forward parallel to the floor. (I wish I could show you the picture!) Lift your hand up toward the ceiling as far as it will go comfortably. Repeat with other arm. Repeat 15 times/set, 2 sets/session, 2 sessions/day. (I can do one one set per session.)
4 Standing up, put one hand on or near the opposite hip bone, arm straight across your body. Use your other hand at the elbow to gently pull down until a stretch is felt in the shoulder. My PT says it's like trying to put your hand in your opposite front pants pocket. Hold 30 secs -- again, last 10 secs is the important part. Repeat with other arm. Repeat 3-5 times/set (I do 1!), 1 set per session, 2 sessions per day.
5 This one is miserable for me! Standing up, clasp your hands behind your back at waist level or below. Push hands away from your back a bit and hold 30 secs. Pull hands up toward your shoulder blades and hold 30 secs. Pull hands across to one side and then the other side, each time holding 30 secs. I hate it! Repeat 2 times (no way for me) per set, 1 set per session, 2 sessions per day.
6 Standing, squeeze your shoulder blades together and down toward the floor, like trying to put each shoulder blade in the opposite pants pocket. Repeat 15 times per set, 2 sets per session, 2 sessions per day. This is the only one I can do as directed!
I'll be interested to find out if these help you -- or anyone else -- too!
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Nancyjeanne- WHO are these people who sail through??????? Yep, I think MOs do try to be positive though mine said two things " Some people do fine through it " and then, " Chemo can kill you." Okay...... Well, which statement do I believe? I guess both.
Ladies, i am gaining weight and not exercising!!! I listen to you and think maybe I ought to move from my couch. You all may force me out of slug-land!!!
LGFB did give me this great powder eyebrow liner with a brush and that was probably most helpful. Learning to do brows
Fairy, You Go!!!!!! We must be our own best friend & advocate. Love it
Well ladies, the pre-chemo anxiety has pulled up to my driveway. I will take Ambien or Ativan tonight though pretty sure there is a Red Nuclear button in my brain just waiting to be pushed on to addiction mode. Well, not exactly, but let's say I am watching carefully.
Ok anyone else doing chemo tomorrow? Here we go. Xoxo Amy
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Had my final infusion today! Yay for me. Got all my questions answered, I owe a great big thank you to Audra for helping come up with a lot of them.It'll be interesting how her answers differ from mine. As for my crippling back pain, the Dr said to be kind to myself, and since walking even through the supermarket causes pain then don't. I have clearance to be as couch potato as I need to be. She also gave me lots of good drugs for the pain, and once I'm off the decadron I'll need them!
She also said to not worry about using sleep aids until I'm done with rads, that the stress on my body of kicking them would be too much now, so once again, be kind to myself! 6weeks till temp hair color, 3 weeks until sushi, start dieting after rads, and that 2-3 glasses of wine a week are ok. Wait till after rads for working out. She also said I could put a bandaid on any nails that are starting to separate to keep them from ripping off when I dig in my purse, etc. (got one, despite 2x day tea tree oil). She also scoffs at the no sugar thing, and says that while they use sugar in pet scans, I can't possibly eat enough for it to be an issue.
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Momat927 - Yes, I will also be in the chair tomorrow for Taxol #6.
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MinusTwo - My MO added 'aspirin a day' to my stockpile. Go figure. The is some compelling research out there that supplements do help create an environment conducive for cancer and that all we really need is to eat healthy real foods. My MO also said it is ok for me to continue with Omega 3 fish oil, Vit E, and Vit C and add and 100 mg B-6, and L-Glutamine, silica and biotin. However, I read somewhere (who knows where) that BC women should not take additional Vit D. How's that for clear instructions! I'm doomed.
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denise, i will check in on you tomorrow. I dont go in till 1 though. I wish you a manageable time.
Warrior, confusing!!! I too read and hear very confusing & conflicting information. Not sure how to navigate but by instincts and talking to all of you.
Xo Amy ( momat927)
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Bluegrassharp - I've had breathlessness and a very rapid heartbeat with exertion. So call me a coward, I've just been taking it easy and avoiding exertion. I hate the breathlessness.
WW - it sure is but I can never remember how to spell it. Feels like my intestines are filled with toxic waste for about a week... then again, they are! Lol
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Wanted to give you all an update on the questions I asked my MO today when I saw him for post chemo follow-up. He wrote me a prescription for Tamoxifen, which I am to start now and take through rads and beyond. Obviously he thinks there is no need to wait until after rads. He says that Tamoxifen SEs, if I have them, are completely different from rads SEs so there is no way that I could be confused about what is causing any SEs. He also believes that if I get any SEs from Tamoxifen, rads will not make them worse, or vice versa. If I am miserable on Tamoxifen, he said to come back in and he will switch me to something else.
He also plans to put me on Zometa (I have periosteoporosis) for bone strength, and he said that recent research has shown that Zometa also helps to prevent cancer recurrence. I was on Actonel before chemo, and that was a once per week pill. Zometa is a brief IV infusion, once every 6 months (I like not having to remember to take a once per week pill). It can have some jaw necrosis SEs, so I need to check with my dentist and get teeth cleaned before I start.
Finally, I asked about the neuropathy, which still (one month after last chemo) bothers my three middle toes on both feet. He said to give it another couple of weeks, and if it is not improving, call him and he will give me a shot of B-12. He said B-12 is the first line of attack to try to make the nerves more happy happy.
So, for what it's worth, that's the info from my questions today -- maybe it will help any of you with similar concerns.
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warrior woman- lol! Think I missed the sign up!
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Melrose, your post was reassuring about the breathlessness. Now that I've had all those tests ruling out the big evil causes, I think I just need to be less impatient with the situation. I will remember to ask about thyroid, though, since I think I've been borderline a few times and my mom has been on thyroid for half her 94 yrs!
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BlueGrass - good call. I'd forgotten my MO tested my Thyroid first thing.
Warrior - WTH - almost the exact opposite. I'm looking forward to what the RO says!!
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QuirkyGirl, i have had breatheless and rapid heart beat too. It does seem, in part, related to low platelets. Have you had them checked lately?
TeamKim, thanks so much for update. I feel as though you are blazing the trail for us
Wrenn, missed you! Integrative medicine sounds right up my alley but i cannot seem to manage anything beyond the chemo these days.
So it it 5:40 AM and even with Ambien I awoke at 4 filled with steroid and pre- chemo angst. Fun......
Xo Amy
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Amy, it doesn't get any easier to get to that chair! Yesterday my mind felt calm, but yet I woke at 4 and moved soooo slow. My body and primitive brain stem were very busy saying no-o-o-0-0-0--0-0-0, Mr Bill!!
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I am now 6 weeks post chemo, and new side effects keep popping up. The most recent is severe clumsiness! I have tripped and fallen more times in the past week than in my whole life. Yesterday I tripped over nothing and hit my head on a cabinet and still have a headache from that. This morning I tripped over a shoe. I'm completely off balance. Gotta slow down before I really hurt myself!
These days I feel like I'm just waiting to see what the next SE will be. When does it end?!?!
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bondsy- Have you had your blood counts checked recently? You may be light headed or dizzy because you are anemic. I do remember that I didn't feel stable on my feet whenever I would stand up after sitting or lying down. Even though that situation is much better now, I still take a moment after standing up to make sure I'm steady on my feet before I start moving. Hope this subsides soon!!!!
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Thanks Melrose, I'll ask my MO for another blood test to check if I'm anemic. I'm also going to slow down and plan my movements better.
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Denise & PatAlameda, just got home from Round 3. How are you both doing? Final Round early Feb. Filled with Benadryl & steroids right now so not much in way of SE's but know surprises coming around day 3. Hope your treatments were smooth sailing. Did I miss anyone who had chemo today/ tomorrow? If so, chalk it up to poor concentration these days but know wishing you the best. Hey, will we sleep tonight????? Xo. Amy
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Had my last chemo today. Asked a list of questions, one of which was about when / what kind of scans I need now.
He said I won't need a scan until 2 years after my initial diagnosis! NO SCAN??? I find that VERY odd.... I asked why and he said it just worries people and scans show every little thing and he just doesn't like to do them and finds after chemo that people need to move forward and quit worrying about every little thing.!! SERIOUSLY?!!!
We know another girl that had BC years ago and she didn't get a scan either and won't unless bloodwork or symptoms show up...is that the norm??
Seems like all of you get petscans at finish?
He made it sound like I need to quit dealing with cancer and getting more tests and get on with my life...which I LOVE, but I don't want to get less than others or protocol by not getting clear scan at end??
DO I??
Pat- Glad you got answers, when are your scans?
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No scans here; still get an annual mammo for righty. I asked my onco what symptoms I should be looking for. She told me to be watchful and aware of any changes to my body ( self examination of UMX area and righty). She also said that if there was a change in my weight. I can tell you that I've had aches and pains post chemo; some from the chemo and some from just getting older. One of the things she has said is that I will know if the ache/pain is not a normal one. Ok.... to this day, I don't quite know what that means. I have a checkup next week so I will ask her as I always do, what in the heck am I looking for when it comes to pain/aches that may signal something is brewing.
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Audra - Congratulations! You've made it past the finish line! In the last five months I've been scanned, poked, probed, cut, poisoned and scanned some more. It's hard to imagine it all coming to an abrupt end. That will be fantastic!
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Audra--- Congrats on getting to the other side of chemoland!!! Doing the happy dance for you!!!!
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Audra -- congrats on making it out of the rabbit hole, Alice! Haha! Doing the happy dance with you!!!!
--Kim
PS: I was also told no scans until my annual mammo is due this summer.
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Audra, no scans for me. I had an MRI at the start of this, and since I hadn't had symptoms elsewhere, and had neg nodes, there's just no expectation that it would have spread yet. Probably my little journey is different from yours since I go to the radiation station next. I got some GOOD drugs, dilaudid for my pain, so I've got a lot less apprehension about making it through the next few weeks. My MO was all pretty much, just be nice to yourself. 6 weeks to hair color, peeling facial products, dietary supplements, being less paranoid about the sun. She said I won't start AI's until after rads, I think MY body is so ravaged, she wants to give it some rest. No tying to lose weight or real work outs until after rads. She also said not to worry about drug dependence on sleep aids until after rads. She said I could get my port out in 3 weeks, that would be awesome
She gave me a referral to get a lymphadema preventative sleeve. It was a great meeting, and I'll see her in two months for the next drugs.So news is great. However, instead of being all up on top of the world that chemo is over, I just feel tired and blah. Ugh, I guess that's normal, but I'd hoped for something better. Oh well.
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WREN! So good to hear from you! I'm sorry to hear about the pain, that stinks. Let us know how you like the new program and if it's helpful. Darling photo
Audra - hooray for you!!!!
Moma - I go to the BGC tomorrow and will have blood work first. Very curious to see what turns up since I haven't had it done since my last session.
Pat, I hope you and all our other unwell ladies feel better starting today!
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Audra! Wonderful!!!
Dr said scans just for spots on lungs that he thinks are benign nodules, but since lung cancer big in my family he will be vigilant. If no change, good sign. No more Pet Scans for me though, for awhile. He does check tumor markers every time I get blood, apparently. I am definitely having genetic testing for a number of reasons, including being Ashkenazi Jewish. If positive, may mean ovaries out and need to know for daughter. Sigh, long long process, but we are all getting closer to at least no chemo land. Take good care of yourselves, amy (momat) .
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