Anyone on just Taxotere and Cytoxan?
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Thanks so much gals. Ironically, it was already on a slow drip (I think I got 1 drip in me) becuase of some major ichiness and tigling during #1. They say there was no way to have gone slower, plus I had double up on the decadron the night before and the morning of. The biggest dissapointment is having #2 pushed out a full week. I was really hoping to say I was half done now. Oh well.
Since then, I've been reading up on the Abraxane, and it looks like it is much more tolerable, with all the same side effect as Taxotere plus increased bone pain. Yeah.
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Hi ladies,
I had my last TC past tues but I feel the worst out of all of them, I am so dizzy/tired, I swear I am passing out but not sure, might just be little naps because I am still in bed and haven't hit the floor yet. I have dead legs, they do not want to move and my stomach is inflated like a balloon even post laxative, very big. Is anyone else feeling this crappy.
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Misty123, yes, I did too a few days after my last TC. I finally determined it to be anemia and dehydration. The solution for me was to increase my proteins and fluid intake. I felt better very quickly (w/in 24 hours). I hope you will too. Keep us "posted"!0
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I have a question for those who have finished TC for awhile. Has anyone else dealt with myopathy after TC and what was your course? I keep trying to get across to my onc 's NP its not fatigue its muscle strength loss but I'm not sure she really gets what I'm asking--she just keeps talking about chemo fatigue. It's not fatigue.
You know that feeling when you've lifted so hard your arms shake? That's what my quads do going downstairs they're so weak. From what I've read (and its very hard to find much) this only happens to about 5-7% of us and they don't know if its direct muscle injury from the TC or neuropathy that leads to myopathy. Those reports are also very conflicting regarding whether it gets better. I've also noticed that the longer this goes on my muscles are losing stretch and getting very tight. Can I find someone else in that 5-7% and can you tell me how you're doing?
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Hi kmmd- I don't think I had myopathy, but I know that my muscles, especially my legs, felt "heavier" than they ever did before. I mostly noticed it in the morning when I got out of bed. My last TC was Nov. 13th and it has taken this long to feel almost like it did before treatment.
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Hi Kmmd. I think I fit into that 5-7%. My muscles feel like I've been at the gym and worked out to muscle failure. It isn't fatigue. It's muscle failure/weakness to the point I really can't do much. I can get some grocery shopping done but I have to hold onto the cart to get around in the store. It's mostly my legs but it goes up to my back too where it's just hard to be upright. I feel like I'm 100 years old. I still have one more Tx to go on Wed. I've been assuming that this will get better once chemo is done and have not done any research on it. I have been doing some floor stretching exercises which feel good but tire me. I certainly can't do any regular exercising or even walking. I guess I'll have to do some research. I'm a little worried now.
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I'm a month out from last TC (6) and experiencing the same muscle issues. I'm been told that it gets better over time.
Hugs to all.
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I'm no longer that trusting. Having been reassured that everything would be fine, and then having it not be, having experienced with TC what a very small percentage of people on this treatment experience, as a matter of fact since nothing about what I was told about TC and ability to control SE's turned out to be true in my case , I've come to not trust words and reassurances. Because what I'm reading is not that reassuring--even if it happens to a very small percentage of us. I really want to hear from someone who truly experienced myopathy, about how they did and how long it really took for them to be running and weightlifting again--at a level they were before starting chemo.
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Kmmd - I am experienceing what I call muscle fatigue for the first time this treatment, #3, but a woman I know at the hospital who was either on taxtotere or taxol, I am not sure which had very serious problems with SE effects. I am not sure how much this helps since I am not certain of the details but from what I understand, she needed a walker, she had nurapathy and I believe she never finished herchemo treatments because the SE were too drastic in her case. She also had her cancer go misdiagonised for about a year resulting in a 5 cm tumor. So her treatment was very agressive. I beleive when I met her in the fall she was done with Chemo. I ran into her a few weeks ago and she was doing much better. She had finished physical therapy and only needed the walker until she mastered turning corners, which she though would take her a couple of more months, then she would only need a cane. She still feels the nurapathy in her finger tips. She seemed much stonger and in better spirits then when I had first met her.
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kmmd ~ I had terrible weakness in my legs post TC. (My last tx was 10/08/08.) My DH and I had gone to an event in a stadium in early December, and I could hardly climb the stairs, and I remember sitting in my seat and watching many older seniors walk up the same steps without effort, and it was very scary to wonder if I would ever have strength in my legs again. I also suffered from almost excruciating pain in one leg when I laid down to at night. The pain was so bad during the weeks I was doing rads, my rad onc finally ordered an MRI of my right leg, but it was fine.
As of March, I'm back to walking 3+ miles a day, and have just started to jog some of that. The only time I notice the leg weakness is if I squat down, like in a store to see something on a bottom shelf, and it's still hard to get up.
I just think oncs are totally focused on the need to treat the bc and choose to have their heads in the sand about the lingering SEs of both Taxotere and Neulasta. Deanna
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Kmmd-- How is it coming otherwise? It seems you are destined, apparently, like me, to have every SE in the book. YES! I SO get what you're talking about. I have two flights of steps to get through no matter where I want to go in my house. Every time I look at those first seven stairs the dread hits me in the stomach. I feel like crawling up them. It would have to be easier than depending on these mush legs. Firni put it well, not that I work out, it does feel like working to failure. But it's only in my legs so far. I have had some "mild" neuropathy in fingers and toes but it is NOTHING like this at all. Yeah, I got fatigue too, but THIS ISN'T THE SAME! I'm not finished with this mess yet, so I will ask my Onco on Wednesday before #5--if I can get the hyperactive thing to sit still long enough, gawd, I barely remember being able to move around like that.0
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Webwriter, I so understand. We've put as much as we can on the ground floor--but bedrooms/showers etc are up the stairs--and I swear there are several more stairs to cliimb every day, like they multiply at night. Yes, I think we've covered the book. I so wish I could wave a wand and make it all done for you.
Renrel and Deanna, thank you so much. That is very helpful. I do better with an idea of what I'm getting into. (The PT and I did have a discussion when I was in the hospital of the wisdom of me using a walker). Deanna, we live in a neighborhood where a lot of people get out and walk as soon as the snow melts. I've been trying, and yes, the seniors can blow by me. I do think the Onc's worry about getting us through chemo, vomiting, WBC's etc are tangible things they can prescribe for so they focus on them. Things like neuropathy/myopathy are harder to do anything about and easier to "bury their heads in the sand about." After chemo they see us for a maybe 15 min. every 3-6 months. We're sitting on the table in a gown when they walk in, I'm sure at times complaints about I still can't run and its hard to get up the stairs, or the walker or cane in the corner just don't register. Plus, when you think about it, if that 5-7% number is accurate, although their offices are busy, some of those people are consults for hormonal therapy, don't get chemo, or follow up visits after chemo. Each onc has a finite number of patients on chemo at any time. By the time you put in different disease processes, or even if they do all breast, with all of the different types of patients, protocols etc. you've narrowed down the number on TC. So, even a busy breast oncologist may get one person in that 5-7% a year, maybe one other of their colleagues the same. I'm sure it takes a long time for them to build up much experience to even gain much knowledge about this, and TC is a newer regimen compared to AC or AC then T. So, I think for a time to come those of us experiencing this are going to be depending on boards like this for information and help.
Just my 2 cents for those going through this. I've found my typical way of working out is bad. Pushing to do a few more minutes or a little faster or harder each day, or even every few days, is counterproductive and sets me back. Concentrating on flexibility and much more "wimpier" tries on the treadmill are at least keeping me from back tracking. I'll pass on anything I find that may help, and would appreciate it if anyone else does the same.
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kmmd - I am not suffering the level of fatigue and muscle weakness as you but all I am doing for exercise right now is walking and a bit of stretching (yoga for the sciatica I had last treatment) and I am limiting the walking to mostly level ground. Outside if possible so I am getting fresh air, sun and a chance to commune with nature or my neighbors and the track if I am inside. I have not been using my treadmill - it is still a close hanger in the basement. I find that having my IPOD going helps because I am distracted and may go a bit further. I also am suprised that when I push to go a bit further sometime it gets easier, at least that was the case last treatment. I have not pushed much this time. My situation probably is different than yours, but it is what is working for me now. I also really find that my guided imagary for fatigue helps as did the one for fighting canser. I did not like the one for chemotherapy.
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How fun!
I just found this thread for us CT gals
Did my first of six CT treatments on St. Patty's Day (no, they could NOT make it green, unfortunately...) and had only mild SEs. Fatigue and constipation were the most persistent buggers, though.
Looking forward to checking in here for more specific CT-related issues.
Cheers,
Nadine
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Nadine,
Sorry you had to find us, but welcome. I will have #5 of 6 TC on Thursday.
Re; Constipation that was a troublesome thing for me too.. I saw a gastroenteroligist after cycle 2 - he recommended Metamucil 1 Tablespoon in 8 oz juice/water every morning. Miralax 17 gm in 8 oz of water once or twice a day (actually more if needed) -- I start this daily on the day I start steriod pre-meds and take it until day 9 or 10. I also take colace twice a day starting two days before chemo until day 10 . Definately works.
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Hi Nadine - I'm with Kathy on the colace twice a day - I'm 4 weeks out of last TC and still use the colace when needed. I found that Milk of Magnesia(yes, that thing your grandmother used to take!) on the day of infusion and then as needed during the following week. But that first day was usually all I needed along with the colace. MofM works overnight without accidents and makes you feel like you're moving those chemicals through your organs as quickly as possible. Just a personal experience. Good luck and keep in touch here - this is great board for TC information.
Still waiting for my hair and brows to start growing(and other areas) - losing lashes by the day. Hope everyone is handling se's as well as possible. My new nips are healing and I'm using non-medicated callus cushions from CVS to keep them being smushed - the hole is the perfect size, go figure but a good tip for those facing recon in the future.
Hugs to all...
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Hello and best wishes to all of you....my sister starts either TC or TAC on friday (part of a study and not sure which she will have) -- what do you have to offer? they said it will take 3 hrs to administer....what can we expect?
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Maxaroni - I finished TC on 2/13. My infusions were uneventful. However, everyone is different. Are you going with her? Having someone with her during the infusions will be comforting. I took a DVD player with me and watched movies and some snacks and water. Some infusion rooms provide food and drinks. Mine did not. My infusions took about 3 hours. That was seeing the doctor, getting blood work done and then the treatment. I found that the anxiety leading up to the first treatment was the worst part. Best wishes to your sister.
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Swest - that's the best news I've heard. She will have 6 treatments, once very 3 weeks. Forgive my ignorance - how were your side effects?
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I only had a few side effects. The first treatment was constipation and two mouth sores. Some people experience diaherrea so I'd take a wait and see approach. After my first treatment I started taking sentakot (spelling?) the day of the first treatment for 2 or 3 days. For the mouth sores I did everything suggested, saltwater & baking soda rinse 4 times daily, drank camomile tea at least once a day, used the biotine toothpaste and mouth rinse and also had a rinse my doctor prescribed. I did these rinses for two of the three weeks. These SE's were not bad after the first treatment. The fatigue set in on treatment #3. Just listen to your body. I only had 4 treatments every 3 weeks so by the 4th treatment I was saying "bring it on"!
Oh yea, I did not have to have the neulasta shots for low WBC counts. On days 7-14 my doctor told me to stay away from public places. No eating at resturants. No fresh veggies or fresh fruits for fear of bacteria. The hardest part was not being able to be social during this time since I was feeling so good. I had to turn down invites to parties or dinners.
If your sister needs to have the neulasta shots after treatments you may want to ask others what they did for the SE's of the shot.TC is doable. Not fun but definately doable!
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KMMD ~ talking about tight muscles, maybe a physical therapist could help? Maybe you could find some answers and as well keep muscles toned even if you can't exercise them much because of the neuropathy.
I hope this gets better soon!
I am almost done with rads now, sigh. Not too bad but definitely tires me out.
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I just finished my last chemo yesterday!!!! I'm sooooo excited to be DONE. On to bigger and better things like port being taken out and ta-ta's put in. I don't have the port removal date yet but exchange is scheduled for April 29th.
Kmmd, I talked to the PA and the Onc. about the muscle weakness in my legs and back and they both just said that will get better now. In fact, every SE I mentioned, the standard reply was, "That will get better now." So we'll see. I'll try to keep you posted as to how long it takes for things to get better. I still do a 10 min pilotes stretching routine a few times a day. I can't really tell if it's helping or not. It probably isn't hurting.
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Unique, I did see PT when I was in the hospital. Truthfully, I think they do best for those who aren't used to a regular exercise routine. For those of us used to a lot of exercise and crosstraining its like preaching to the converted. When she said how about we try a walker, I answered how about we practice a little longer so I don't need one.
Firni, let me know. I also am very used to the noncommittal and vague "it will get better." Like I said, I think our group knowledge is going to be the most helpful. Let me know about the pilates. The only thing good I can say about this is that even these wimpy workouts seem to really do a lot of calorie burning. Like I mentioned before, I found pushing it will set you back. I've gotten a lot further in the last week by maintaining slow easy workouts and not pushing to increase intensity more then every few days--and then only by a little. Whole different mindset for me, but easier now that I can see a little bit of improvement as opposed to before.
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Hi,
I've discovered your site and all the info is great! I start the 1st of 6 treatments on Monday and this site is awesome! I sorta know what to expect but reading your comments has helped give me a better idea.
I read where it said to drink plenty of water the day before but is there anything else I can do which would be help?
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Hi Cat -
Welcome to the board and glad you found us. There is so much good information on here. When you get a chance, sit and read through some pages. You are completely right about the water - not only is drinking water before infusion imortant but continue through at least the following week. It really helps to flush those toxic chemicals out of your organs and alleviate some SE's. You will end up hating the taste of water but I can't stress enough how much better you will feel if you hydrate. Some of the other gals drink flavored waters or teas - it really doesn't matter as long as you drink!! Your other nasty enemy is constipation so make sure you have something on hand to deal with that the first couple of days. Some of us use miralax, milk of magnesia(my fave), senecot...but just make sure you have something that first night because if you can move your bowels the next day you will feel better all over
) Keep us posted on your progress - this board has been a life saver for me because the docs see so many people that they just don't have a handle on any specific SE that some have and others don't. Good luck!
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Bobcat, thanks for the welcome! I was reading some of the pages which is what got me to join. I hadn't planned on getting into a discussion group but this was to good to pass up. My sister is an LPN and previously had breast cancer but didn't have to go thru chemo, she has really helped me understand alot of the stuff they've thrown at me but you guys have already given me so much helpful info. I'm heading to the store today to stock up on some items that I've read about. The mouthwash cocktail, hard as nails, etc. I'm looking at wigs tomorrow but can't decide if I should go ahead and buy or just pick one out and buy later. Some of the stuff on the site, I don't totally understand yet but I know I'll catch up real soon. Thanks
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Just thought of a question that I'm curious about! With the hair loss - does anyone have dandruff? Do you still have the itchty, flaky scalp? I'm hoping not, don't think it would be pretty with bald, flaky head! Mine got out of control after surgery when I had others helping me wash my hair. Just thought I'd check.
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Cat1, my onc. nurse sugested that I put a good thick cream on my head. I did not have any flaking but I live in a humid area.
Sonia
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kmmd, I finished my treatments in December, and gradually, my muscles improved. It was terrible, though, during the chemo. I thought I would never be able to lift my arms and legs again. My sister broke her leg during chemo a few years ago, so I was VERY careful. Climbing steps was horrible for me. It was all I could do! And that was how she broke her leg -- she fell down the steps. I had my surgery about a month after my last chemo, (Jan 7) and I'm back to normal now.
Cora
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kmmd, I finished my treatments in December, and gradually, my muscles improved. It was terrible, though, during the chemo. I thought I would never be able to lift my arms and legs again. My sister broke her leg during chemo a few years ago, so I was VERY careful. Climbing steps was horrible for me. It was all I could do! And that was how she broke her leg -- she fell down the steps. I had my surgery about a month after my last chemo, (Jan 7) and I'm back to normal now.
Cora
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