Calling all TNs
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This is one busy site! Can't keep up, but I have a few questions:
After CA my hands and feet hurt, toe nails etc. One doc said Neuropathy, but you can't get that without the T that starts next week. So it is apparently Hand-Foot syndrome, I can barely turn a light switch. Any ideas? I know it will go away, but I don't like feeling handicapped. I have heard Naseau isn't bad with Taxol? Is ice effective to prevent Neuropathy? I know L-Gitimine works, but is there a rx pill? Thank you! K
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PinkPeeCA; my Dr prescribed Lycia and over the counter adopholis acid (spelling?) They really helped me a lot. I hope this helps.0
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Hi Ladies, please allow me to post my questions here. I have searched around but not sure where is the best place to post my questions. I have seen a lot of you had dose dense AC then doese dense Taxol, I will have the same regime but will have TH, instead of T. Thanks for the information about SE after AC, just wondering if someone can share experience if one can work sometime during AC treatment, capability of driving etc? I am hoping to work sometime during AC but not sure if it is possible. The onc switched me from FEC to AC after first consultation, not sure which one is harder. but I do hear AC is harder than T. I will get 10 neupogen shot after each AC. Thanks so much!! meg
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Hi meglove. I had AC every 2nd week for 4x. I worked through the whole thing. I only took off for my chemo on Thursday afternoons (I worked in the am) and when I had to go back on Friday for the Neulesta shot. I had minimal SE with AC. I drive approx 1 hour each to and from work everyday also. But everyone is different. I had more trouble with Taxotere. The last 2 treatments were hard on me. Not to say AC was a piece of cake but my SEs were minimal and since I work in an office I could manage to work.
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Slcst1: I'm triple negative and thought I'd have dose dense AC x 4 and dose dense Taxane too. This is what I concluded after my extensive research anyway. However, a lot depends on the size of your tumor, node involvement, lympho/vascular involvement, and oncologist recommendations. I ended up having a 3 mm tumor after all was said and done, and therefore was recommended 4 rounds of TC every 3 weeks. After getting a second opinion, I realized this was the standard of care for my particular dx. I recommend you do your research, gather all the questions for your onc, and then after they suggest a treatment plan, get a second opinion. I even had my tissue retested just to make sure everyone agreed.
I'm 4 days from first TC now, and feeling fine thus far. Very few minor SE's last few days... hopefully will continue this way.
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Pinkpee: Is it pain or is it cramping and if it's the later, are you taking Magnesium as this really helps. My dr has me take Designs for Health Magnesium Glycinate Chelate Capsuls 300mg x 2 day. Also, I got 3 opinions and first dr said mx, chemo, rads, 2nd dr said 50/50 rads and third dr said even though my tumor was growing towards the chest wall, he cut into the chest wall and I didn't need radiation. If you have it in the lymp nodes though, I would have radiation. What kind, if any, reconstruction are you planning to have as some require this to be done before radiation.
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Meglove: You will be having the same chemo as I had, except you will add the herceptin to the taxane as you are her2+. My experience with AC was that it was not too bad - I am self-employed and kept working throughout, though there were a couple of days (day 4 and 5 post-treatment) when I was tired and feeling fluish. I timed those for weekends when I could relax. Even so, I am an avid skier and skiied throughout my treatment (as well as exercising, as I was part of clinical study for that). I had good meds for anti-nausea and stayed on top of mouth sores with a solution of baking soda and water. As for driving, I did drive on non-treatment days, but there were times when my head was fuzzy and I know I wasn't as alert as usual (chemo brain), so I wouldn't have wanted to be driving in heavy highway traffic, for example. All in all, I wouldn't say it was a piece of cake, but it was certainly doable and easier than I anticipated. That said, every individual is different - and your body may react differently. It's best to stay as flexible as you can... til you know.
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Hi everyone! I have enjoyed catching up on the posts.
Welcome to all of the new women on this site. So sorry you have to be here but happy to help in any way I can. Positive thoughts to you all. One day at a time and we can all get through it. There is such excellent advise on here and how wonderful to get it first hand. All of these women have helped me in so many ways.
Swanny- Way to go almost done.
MBJ- Pies look fabulous. Yum!
Lynn- How are you feeling. I will PM you soon.
Titan- I just can't thank-you enough for starting this post.
Kitty- You look fabulous!
Just a note to the newbies. I did 4 DDAC and then Taxol I think it was 6 or 7 and my tumor and lymphs did not respond and were growing rapidly so they did emergency surgery. I had 14 out of 20 lymph nodes positive after all the chemo. I had a clean petscan after surgery and just started Carboplatin/Gemzar this past Tuesday. I've had severe pain in my legs from my hips to my knees the last week so they are doing a cat-scan this Monday. Not sure if it's SE's from past chemo or what. I am optimistic that it hasn't mets. SE's so far have been general achiness mild nausea easy peasy compared to AC so far. I will get this chemo cocktail on day 1, day 8 and day21. I'm not sure how long. This is going to work I feel it in my bones. LOL. After this chemo I will get radiation and then be eligible for the clinical vaccine trial at Sloan Kettering. So far no Mets and hope it stays that way. If I do get Mets I will be eligible for the parp trial.
Yup! Going out again with no wig this has been so much fun, kind of feel like a punk rocker. LOL. I figure since I will likey be loosing the precious 1/4" of hair I now have I should cherish it and flaunt it. Ha Ha!
MY Motto: Life is good unless we decide to make it great!
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When will the hair start to grow after AC+Taxol? My chemo may end in next April, need to go to a conference in June, hope wig wont give me trouble at the airport and meeting
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You'll lose your hair during AC but it will start growing back while on Taxol. I am 9 weeks out of chemo and my hair is about 1.5 inches now. But it came back ALL gray (I'm 53). Last night I stopped at the beauty salon and they trimmed the "wild" parts, so today is the first time I did not wear a baseball cap to work. People say it looks great and I should not wear the caps anymore.
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meglove - my hair did not start growing back on taxol. I had 4 x DD taxol and it seems that if you do DD it may not grow until you are done. Some with weekly taxol see growth! There's never a clear answer
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Hi everyone, been lurking for a bit but do check in pretty regularly. Wishing everyone well. This year has been rough on most of us - looking forward to a kicka$s 2011!! Yes!!
Laurajane, when I was on carbo and taxotere, after my first round I had really bad hip and leg aches. Made it hard to sleep. I couldn't tell what it was from. They also gave me neulasta shot the day after. You're on so many meds, it's hard to tell what SE is really from what. Anyway, I found that in my subsequent treatments that my leg pain was greatly diminished. I hope yours subsides too. *happy thoughts to you*
Swanny, so great that you're almost done. My rad SEs sort of sneaked up on me the last week of rads then the week after... but really wasn't too bad. You'll be done for Christmas. Yay!!
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Meglove:
I was a "young" 62 when diagnosed. Had 1.2 cm IDC, no nodes, no vacular and no family history whatsoever. I did the AC + T. I had every side effect known to man, some quite serious, even a week of hospitalization due to febrile neutropenia right after my first AC, but still worked through it all and after that hospitalization, only missed my day of infusion from work each time. I had my chemo on Thursdays - and side effects would begin to hit lightly on Saturday, Sunday, not so good, and Monday's dragged myself into work, but made it through. Good luck! You can do this! I rejoiced when the last chemo was done and was sooooo glad I saw it all to the end. There were times I seriously felt as though I wanted to quit. Just remember, this too shall pass.
Linda
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The neulasta shots surely do make your bones ache like crazy!!! The marrow is stimulated to overproduce and is pushing out all the new white blood cells, and it can be very painful. Take 2 advil the day before, day of and day after the shot. It worked 100% for me.
Alot of the work questions depend upon your job situation. There are so many variables and that is going to make a difference. I think you will have to wait and see how you react. I was flat on my back for 8-10 days after each A/C infusion, and others are snow skiing!!! Hope for the best for you!!!
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Meglove - I did DD AC + 12 weekly Taxol. I did choose to stay home, with the intent to go back to work during chemo. However, I did struggle through chemo. I wasn't necessarily bedridden and did walk everyday, but there were days that were tough and that my mind was a little too fuzzy to think clearly. I won't go into great detail, but for me if there was a SE I got it. Looking back I am glad I took the time so that I didn't feel pressured to go to work when I was feeling bad. I was able to hook up online from home and did work that didn't require too many brain cells. I think it really all depends on your office, insurance and finances as to what would be best for you.
Swanny - glad to hear that you're almost finished with rads.
LJ - love your motto - I may have to borrow it.
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Hi LRM216 and jenn3, thank so much for the heads up. I now have some idea what I should expect. My first AC will start next Tues, Dec 8th but I haven't got an appointment for port yet. Not sure what onc would suggest because I just saw him on Dec 2nd and knew I will have AC. The schedule seems tight. Did you have port or PICC when you had your chemo? Thanks! Meg0
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I didnt have a port - the chemo nurse was able to find enough veins.
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I've got skinny little thread like veins, so I had the port. If you get one - make sure you get a power port - it's good for scans, etc, should the need arise at any point. I was sore from the port placement and could barely turn my neck for the first week or so (no one told me any of this prior to the placement), so I was scared. Found out it's totally normal and it did all go away. I had an onc that insisted it come out 6 months after chemo was completed. I fought her, but she won. I developed a DVT in my lower left calf after my first AC - no symptoms or pain, just a slight swelling of my left ankle that she zeroed right in on, so that's why she wanted it out after chemo. Every three months for my blood testing - they have to "dig" to get a vein - ugh! Best of luck to you.
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meglove- I was on 12 weekly taxol and my hair started to grow back on my head but I lost eyebrows and lashes. Funny how it works. Also, I had my port installed and was ready for chemo in just a few days. I love my port as far as ease goes. I still get nervous every time I get chemo though. Thank goodness for Xanax.
Swanny- I bet your hair looks great. I have quite a lot of gray in my hair also. I consider it free highlights. LOL
Swiftbird- How were your SE's on Carbo? I feel horrible and I've only had one Carbo/Gemzar and it was last Tuesday. Today has been the worst just sore teeth and that yucky hangover like feeling. I hope I feel better tomorrow. I had hoped to go out and have fun tonight but all I want to do is stay at home in my sweats and curl up on the couch.
Tnbcruth and Jenn3- i agree that the kind of work one does makes a huge difference. I am a landscape designer and used to doing hard physical labor like building stone retaining walls, planting big balled trees etc. The heat really bothered me while on AC also. I didn't start working again until after I started the Taxol then I felt surprizingly good compared to AC. I know all chemo effects us all differently. I have such admiration for those of you that worked while on chemo. P.S. Jenn 3 don't just borrow my motto LIVE IT!
LRM216- Same here, no one told me any of that either. I went to the emergency room the day after my port was installed because I thought there was something wrong with it oh and I also thought I was having a heart attack. Turns out it was an anxiety attack. What is a DVT?
It's fun talking with all of you hope everyone is having a nice evening.
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LJ: You have to be the spunkiest person I have ever met - even while suffering from the chemo!! I think when I and so many others here lost our energy through this beast, it all went to you! Amazing, you are.
DVT is a deep vein thrombosis - actually it was a small blood clot in a vein in the center of my calf. Had no symptoms whatsoever, except for that small amount of swelling in one ankle. Swelling in both ankles is ok, onc said, but when it happens in only one foot or ankle, they suspect a clot. I was lucky - it is completely gone now, but had to do 6 months on warfarin and needle pricks every 7 days, nothing with Vitamin K - salads, green veggies, etc. She said it was from my AC. Such a fun disease to have - just never know what crap is going to pop up. Glad you're adjusting to the port, they are a God-send. Keep on doing great, LJ!
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laurajane, I scheduled my carbo/taxotere treatment on thursday mornings and my worst days were sunday afternoon/evening and mondays (had I known, I would've probably scheduled wednesdays - because I worked throughout, but there you go). I felt crappiest the 4th-6th days. I was kinda bad the 1st round, much better the 2nd-4th rounds, then nailed me the 5-6th rounds. As always, of course, it's so individualized... so many factors... but that was my experience. Hopefully I won't ever have to go through it again -- but I scheduled a bunch of work travel towards the end (having lived through the 1st, then the 2, 3 & 4th being very tolerable...), which was still do-able for me, but not ideal. By the end, I was just fatigued. I had to have a blood transfusion before my last round - even then, I couldn't even tell til my blood tests told my team... I felt tired, but by then, you get accustomed to fatigue and accomodation. Geez I sound like Debbie downer -- I have to say, that throughout all this, I found it very do-able and worked throughout (great byproduct = maintaining sanity... but I'm a bit of a professional workaholic. I'm a lawyer... I have had numerous people point out very un-mericilessly that lawyers are a bit warped). I hope the carboplatin helps -- it absolutely helped me, of that I am certain. Things were dire when I started this path, and my future looks very bright now.
I am thinking about you Laurajane... 0 -
Busy busy thread...thanks LJ for saying something about starting this thread..have you noticed what time I started this..it was at midnight..back in May...I was just reading on here...and thought..we TN's need a home...I had commented on a couple of threads and was told that I was off topic of the subject of the thread...not a big deal..but I thought.. I need a place to go where I can talk about anything I want..without being told I couldn't..I thought maybe others might want that too..
We as triple negs..we are special...we are that 15% of breast cancers...may be a small group but it seems like alot of us are on here..I like that you guys come on here and say whatever...whether it is jokes or chemo or rads or our fears or whether or not we are Hungarian...it doesn't matter..just talk. so many times...I've felt the need to just put what I feel in writing..I think we all do...my family doesn't understand this...they dont' realize that this is where I go to get things off my chest (no pun intended..really)..and then to them..I can be what they want me to be...you guys are my punching bag plus a shoulder to cry on...plus laugh and cry some more...oh well..enough of that!
Pink..I think it sucks your insurance would deny you rads...tell them that you are freaking triple neg...this really ticks me off.
Meg..sure you can work or whatever doing AC...do want you feel you can do...I worked and drove my car...I drive like a bat out of hell..whether on chemo or not...oh..and my hair did start growing back during Taxol....I was so happy to see that peach fuzz! I read on some thread to put aloe vera on my head..plus I used shampoo for damaged hair...as soon as chemo was done I started taking biotin...
And don't mean to freak out anyone going through chemo now but I also grew hair on my FACE...! Yikes! I had to shave my face...! Just imagine my DH and I standing at the mirror shaving! I had to do it only once though...
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I have a few steroid-induced "granny" hairs, myself. I pluck and pluck, but I think I'm stuck with them.
And I consider this my 'home' thread, too. Thanks, Titan!
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This is a busy thread, but I love all the conversations! I was on dose dense AC and weekly Taxol. I was supposed to be on DD Taxol, but my onco switched me to weekly because it was less per dose and I would have a better quality of life. I worked through chemo, but it was hard to do around the 4th dose of AC. I'm a sales rep and can work from home at times. I was really considering going on disability, then I went on Taxol. It was much easier for me to tolerate than the AC. I had no nausea, just some fatigue. I lost my hair with the AC, but it started growing back about the 6th week of Taxol. I lost my eyebrows and lashes. They are starting to grow back and I finished chemo on Oct 27th.
I am doing rads, just finished #8 out of 33. After that I will have a full hysterectomy and oopherectomy (probably in March). I have the BRCA1 mutation (so does my sister). This whole cancer thing just sucks! I hope I never get it again!!!
I really need to adopt a super healthy eating lifestyle. Do any of you juice? I want that juicer they sell sometimes at Costco (I think it's the Vitamix). You can throw any veggie or fruit in there and it's so yummy. And it keeps the pulp and stuff, so it's better for you.
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Speaking of constipation... I found that prunes worked best for me. I had it the worst during AC. It felt like I was pooping rocks. I know... TMI, but that's how it felt!!!
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PinkPeeCA - I just did my second Taxol last Tuesday and I think I am having peripheral neuropathy all over my body, although I am wondering if that is possible. I have pins and needles all over, mostly around my abdomen, hands leg muscles, just everywhere. Is anyone else feeling like they can't breathe? It is an awful feeling, like the very core of your being is not there. My Oncologist had told me to buy L-Glutotomine, powder form, which was measured in grams, which is much higher dosage than milligrams. I think due to the high dosage, I felt I had even worse SE's with that, so am trying to just take the milligrams, see if that helps. I have been suffering since Tuesday after the Taxol. I am so scared, so worried, hope this is only temporary and that it will go away shortly, once the Taxol gets out of my body. My next treatment will be on 14th December and the last one on 28th Dec. I am freaking out about my nerve damage. I think what I am feeling is muscle weakness from the peripheral neuropathy. They say it can cause two types, acute or chronic. I hope mine is only acute.
I felt much less SE's from Taxol than with AC. I just feel like there is goo on my tongue all day long, I have keep on brushing my tongue. I also can smell water, so that is very difficult to drink. Maybe a little less appetite too. I can't wait for this to be over, have two more left. I would be done with a total of 8 dose dense by Dec. 28th.
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Good Morning everyone! Woke up to snow lots of it. Just may hinder any more landscaping jobs I'd hope to get done before Winter set in. LOL. Up early my son had to be at wrestling practice at 6:30AM. The nerve of his coaches. They don't realize Saturdays are for sleeping in.
LRM- Your DVT sounds scary. Thanks for your compliment but all of you wonderful ladies have helped me through my "Woe is me" days. I still get them I'm just not typing when I'm cryin'. Ha! Ha!
Swiftbird- Thanks for the input. If my timing is similar to yours than hopefully yesterday could of been the worst? Wow! A lawyer, very cool! I had always been a work-a-holic too. BC has changed that for me. My mantra: De-stress, De-stress, de-stress, this works for me if I'm not already stressed out. LOL. Loved your correlation of your bright future with the sun-glassed smiley face. Makes me think of sunny Florida. Thank-you.
Titan-You started this thread about the same time I was diagnosed. I can't imagine not having had it. I'm still cracking up over the picture in my mind of you and DH standing there shaving. I'm personally quite enjoying my full beard and mustache, I do wish the hair on my head was growing as quickly.
Kittycat- "Speaking of constipation?" Love it! You and Titan have brought tears of laughter to my face this morning. Thank-you.
Lovelyface- So sorry you are having to go thru all of these horrible fears. Did you call your onc about your SE's, recently? Only two more to go I hope you can do it and the time goes by quickly. I had no appetite on AC but man, on Taxol I developed this insatiable desire for chocolate. Crazy because I had never really been a sweets freak before. So I'm mentally sending you a double deck-er triple chocolate cake.
I'll be thinking about all of you today and I'm sending positive thoughts your way.
Todays Poem, like?
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Laurajane, How are you feeling? Keep us posted about your bone scan.
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Lovelyface: I had trouble breathing during my very last TC and it was an alergic reaction to the Taxotere and they pulled me off of it. Did you tell your dr?
Laurajane: Snow!!! Must sleep in on a first snow day! So happy to hear you are in good spirits. Did they give you Neulasta or Neuprogen after the chemo? Where did they give it to you? I had the Neulasta shots and always got it in the fat of my belly (it's the only place I store fat, sigh) and I never had any bone pain at all, which is common with these shots. I am hoping this is all it is for you. As for your full beard and mustache--ROFL!!! Don't even go there! Thank goodness for razors and makeup or I don't know how I would have gotten through the uglies of chemo.
Too many posts and I have had a busy, busy week. Be well all and yes, Titan, thank goodness you started this thread. I actually was accosted in the waiting room yesterday by a woman who has regular BC who had the gall to tell me that all women who have chemo have it return somewhere else in the body and that's why she chose radiation and a lumpectomy. Ha! As if we had a choice. I just looked at her and said, if I hadn't had chemo I would be dead now. Thankfully my dr called me into his office or I would have slapped her just to shut up her ignorant mouth. Sorry, had to get that off of my chest. Happy Saturday!
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Titan, OMG thank you for saying something about the facial hair. I've never had the problem until after chemo, then *poof* I was so afraid it would come back after I got rid of it, but glad to hear it doesn't! (WHEW!) Also, thanks too for this thread. It's the only one I really check these days, now that I'm past chemo... but the questions and fears don't go away, so this is a great safety net for us TNs.0
