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Anyone on just Taxotere and Cytoxan?

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Comments

  • TennesseeMichele
    TennesseeMichele Member Posts: 26
    edited June 2008

    Tigwin and Beachmom,

    Can you include me in your thinking about more surgery?  

    Tigwin, I may have already asked this; if so, may I ask again?  What was your previous cancer?  Mine was Hodgkin's lymphoma (in 1991).  I had a lumpectomy in February.  Haven't met with my oncologist to talk specifically about mastectomy after chemo.  I don't want more surgery, and feel good about the surgery option I already chose, but I can't escape the fact that this is my second cancer, and I wonder about my future and what steps I need to take now.

    Please let me know if you start another thread regarding this.

    Michele

  • pmwelser
    pmwelser Member Posts: 10
    edited June 2008

    Day 4 of tx 2.  Hi to all.  I just wanted to add my two cents on the red face.  I have gotten reddness on the face and neck after both ttreatments.  It goes away after a day or two and there is no itching.   I am having more heartburn this time in spite of taking Zantac twice a day.  Maybe it is because of the antibiotics for folliculitis.  So far, this time I have not had any thrush.  I had a Neulasta shot this time and have some aches, but not more than the last time without the shot, so it is tollerable.

    Tonight and tomorrow are my class reunion.  I am looking forward to seeing everyone, but am a little tired and achy.  I will take some Tylenol before I go tonight and try to take it easy tomorrow before the big dinner.

    Thanks to all of you for sharing your experiences with all of us.  You help me get through the rough times and stay focused on the reason we are all doing this - to get well.  Congrats to all who are finishing up their txs and are starting to get back to "normal."  May we all be there soon.

  • beachmom13
    beachmom13 Member Posts: 85
    edited June 2008

    Michele, of course we'll include you.  After all, we're all in this together.

    Lee

  • RNKaren
    RNKaren Member Posts: 32
    edited June 2008

    RobinK- No lines on the nails, just a "dip" in each one.  That's it.

  • slortiz
    slortiz Member Posts: 142
    edited June 2008

    Hi! Just checking in. Day # 1 after 1st T-C Tx. Still feeling great. Went for my Neulestra shot this morning and surprised the RN by requesting it in the tummy. She was delighted as no one asks for this and she agreed it was the best spot. Piece of cake. I was happy to learn my PET and CAT scan results showed absolutely nada. I was happy to be out of there. Will be even happier when the stool-softener kicks in--I seem to have gained 3 lbs since yesterday!

    Hubby insisted we go to the wig shop after the doctor's office and we had a fine time picking out a wig for me as an anniversary present. Would have preferred a large diamond, but what the hey. It was a wonderful gesture on his part and it weren't cheap. Also bought a little fringe of hair to wear under a hat or scarf (very cute) and one nice scarf. Also bought a nice pattern at JoAnn's and some material for other scarves and turbans since I thought it might make for a fun sewing project.  Can you tell I'm still up on the Decadron??? Whoopee. Maybe I'll make ten turbans for everyone doing chemo with me. I will need to make that many to get my money's worth out of the expensive pattern. Cripes, I remember when they cost 25 cents!!!!

    Tigwin--Where in SoCal do you live? If you are going to the City of Hope, do you live in the San Gabriel valley? I live in OC in North Tustin, and I'm not looking forward to having to wear wigs and hats and scarves this whole hot summer either. But am looking forward to spending some quality time in the pool with my grandkids. Got my sunscreen ready. Guess I better get to work on fashioning that pocket in my swimsuit for the breast form. They will just have to tolerate my bald head (still another two weeks away), but perhaps one boob would be a bit more than they could handle.

    By the way everyone, the tlc site has these pockets to buy to sew into things like swimsuits or sundresses and they are very modestly priced. You get 2 pair if your bi-lateral, or 4 single sides for something like $14. Seems like a pretty good deal. Sure would hate to be swimming around and find the thing floating along side me like a rubber duckie!!

  • Kfalls
    Kfalls Member Posts: 67
    edited June 2008

    Hey guys!  Did #4 hit anone else like lead? Whoa - this one had knocked me for a loop.  Just looking at the stairs to my bedroom is menacing. Three was so good that I had high hopes for this last one.  Just feeling sorry for myself.  

    Karen 

  • sharons
    sharons Member Posts: 177
    edited June 2008

    Hi All - To the newbies, sounds like you are all prepared.  This site is a great place and I still check in although I am 8 wks out from last tx.  I am in the boost phase of my rads and today I got my schedule for next week....only 3 left and on the Wednesday one it has F for Finished. Also inside my schedule was the cancer center patient survey....so I guess this really is the end.   There is not enough room on that survey for me to express my gratitude to them.....my CC is a wonderful place and ALL the employees are exceptional! 

    I do have hair -maybe 1/4 inch looks mostly gray but that's ok!  My eyebrows are coming back after they left last week.  My foob is red, but really not too sore.....and my biggest complaint is the hot flashes.

    I hope everyone has a good weekend.   We plan to ride our motorcycles to Peaks of Otter campground restaurant for breakfast in the morning.  Should be cool on the mtn.

  • sandym
    sandym Member Posts: 70
    edited June 2008

    Karen - #4 is the worst.  I hurt all over, have no energy and have the first case of the blues since my surgery in March. My family, who have been wonderful seem to have forgotten it's not over. It's not really their fault, I suppose.  I'm not usually a complainer so how would they know but no one except my hair dresser has even asked how I feel. Actually, that's a little ironic, isn't it? Glad you mentioned it, Karen.  I was going to try and tough it out by myself but misery loves company.  Sorry you have to be my company.

  • Kfalls
    Kfalls Member Posts: 67
    edited June 2008

    Thanks Sandy - I know what you  mean - everyone is like "well, it's over, yeah!" and I feel the worst I have felt.  I find that kind of ironic!  Glad to know I am not alone and I just keep hannging onto knowing that I don't have to do it again.  Keep me posted on your progress and have a great weekend.  

    Karen 

  • LizC
    LizC Member Posts: 14
    edited June 2008

    Hello everyone just an update on me. Saw the Doctor Friday after my heart Echo, he switched me to AC. I took it yesterday and no reaction thank God. He did say in his 12 yrs I'm only the 2nd person that had that kind of reaction on the 2nd treatment with all the premeds. So what happened to me in not normal.

    The AC is different already I feel nausea which i rarely felt with TC. This just day 2 and I am on Emend. I'm a bit worried about how much Nausea I will have. Trying to work while going through treatment. Not very easy to be honest. Any advise on the Nausea is apperciated. 

  • otter
    otter Member Posts: 757
    edited June 2008

    Liz, I mentioned this in a different thread, but you should call your onco (even on a Saturday) and request something else for your nausea.  AC is much more likely than TC to cause nausea and vomiting, and it generally requires stronger (and more) meds.  Oncos should be giving you a "breakthrough" anti-nausea med, like Phenergan or Compazine, in case the stronger meds (Emed, Kytril, Zofran, etc.) can't keep it completely under control.

    The bottom line is that you are not supposed to be nauseous with today's chemo protocols.  The chemo drugs may be stronger, but so are the anti-nausea meds they have to fix the problem.

    Karen and sandy, I know what you mean about everyone thinking it's over once you get that 4th infusion.  I was quick to point out that I was getting TWELVE WEEKS of chemo, which included up to 3 wks of SE's after the last infusion.  And, since the SE's were the main problem--not the infusions themselves--I didn't consider myself finished until the full 12 weeks had passed.

    My 4th tx was maybe a little bit easier than #3, but only because of the psychological advantage of knowing I wouldn't have to do another chemo again.  That made a huge difference for me.  The SE's for #4 were about the same as for #3:  diarrhea for a couple of days; sore mouth; bad taste; aches and pains from Taxotere & Neulasta (though not as bad as with previous tx's); "burns" on my feet; rash on my arms; and fever on days 11-13 requiring a week of antibiotics.  With #4 I was much more tired and weak, though, and the weakness has lasted much longer.  This is day 25 since my last tx, and I still tire easily when walking up stairs.

    OTOH, my appetite has returned and I've gained back 2 of the 6-8 pounds I lost during chemo.  Gotta get on that elliptical machine!

    otter 

  • robink
    robink Member Posts: 60
    edited June 2008

    NO NO NO NO NO

    #4 can't be worse or bad or what ever.  Chemo is on July 3rd, July 10 and 11 dd and I have to go for her college orientation/registration.  #2 was almost a walk in the park and since #1 & #3 were bad #4 HAS to be easy.   RIGHT???????????????????

    Otter - I want that 6-8 pound weight loss.  I seem to be slowly putting on some pounds. Not happy.

  • Kfalls
    Kfalls Member Posts: 67
    edited June 2008

    Robin - One and three were easy for me so 4 should be a good one for you.  :)  I think we are all so different.  My main thing is fatigue and I am only 4 days out so should get better.  It is really good knowing that I am done though.  Sorry to have scared you.  I also put on about 8 pounds so wish I had followed Otter's pattern.  I guess I will just have to hit the gym when I get my energy back.

    Think positive.

    Karen 

  • sandym
    sandym Member Posts: 70
    edited June 2008

    Robin K. - There's hope.  #4 IS better in one way. It's day 5 and I don't have the weak kneed shaky feeling I usually have for up to 14 days.  I had the least amount of steroids this time and it seems to have made a difference.  I still have my usual crampy feeling and backache.  My aches may be worse due to the decrease in steroids.  Can't win with the steroids!  My mouth is doing well. I have a slightly off taste and a little bit of irritation but it's minor.  I did use the ice chips again  even though my onco (among others) said that usually works for other drugs - not Taxotere.  Can't prove it by me.  The 2 tx's I used ice were significantly better - mouth wise.  

    Karen and otter - Is this stuff cumulative?  I'm definitely more tired too. At least I know it's to be expected.  How long does it take to eliminate all the drugs from our bodies?  My foobs and everything in the area are so tight and have been since the 2nd tx.  My onco thought it might be bloating but my weight is the same as when we started and my feet look and feel fine.  Enough complaining.  It's a relief to be on the other side of chemo no matter what. 

    Minimal se's and a good night's sleep to all of us.

    Sandy

  • catlover44
    catlover44 Member Posts: 78
    edited June 2008

    Valerie, welcome to the messy-hair-everywhere-but-your-head club!  You almost beat me, don't worry!  I'm sporting a very short hairdo, but if someone saw me who didn't know what I looked like before, it just looks like a short 'do on someone with thin hair, no big deal.  Yet.  I comb it with a fine tooth comb while I'm still in the shower, which helps eliminate some of the mess, but not all of it.  I end up with a nice little hairball on the drain cover that I can just scoop out and throw away.  (Hope no one is eating right now!)  My DD is coming to see me Monday, and I'm hoping I can hang onto at least this much so I can go "topless" while she's here and not look too alarming.  I have to admit it does feel nice when the wind blows and it feels so refreshing, and I don't have to grab my hair to keep it from blowing all in my face.  Trying to look on the bright side. 

     Thanks everyone for your commiserating about the "BLAH" days.  I guess we all get them at different times, but my neighbor TN-Michele described it best--don't want to do anything, but sitting and reading or even sleeping aren't appealing either.  I have to constantly remind myself on those days, "At least I'm not sick, etc" but the mind in that state just says, "Ah, who gives a damn.  I'm gonna be in a crappy mood no matter what."  Maybe next time I'll just pop Benadryls for 2 days and sleep it off.  Of course, I can only sleep on my back because of the port poking me if I lie on my side....so too much sleeping makes me feel sore.  Arrggh!

     Today is good though, and i wish the same to all of you!!

  • catlover44
    catlover44 Member Posts: 78
    edited June 2008

    I accidentally posted on the next-to-last page, and didn't see the ones on the last page.  Oops.  Looks like the only pattern for our tx's and which ones are worse is..that there is no pattern.  Frustrating.  I'm day #3 from tx #2 and after those crummy couple of days, feeling OK.  If I could just get this $&#$*# port to stop bothering me.  I'm resigned that it's just going to be annoying until the end.  Anyone else have a bothersome port?  Just pokes if I move the wrong way, which a lot of ways seem to be.  Waa, waaaa....

  • otter
    otter Member Posts: 757
    edited June 2008

    OK, I'm  trying to think of things that weren't as bad for tx #4.

    Let's see... 1) I didn't get constipated at all with tx #4;  2) my sore mouth and tongue weren't as sore as with my other tx's and it didn't last as long;  3) I was just a little bit achy from the Neulasta (or is it the Taxotere??); 4) the diarrhea was mild and only lasted 2 days (and didn't require any meds); 5) my appetite was better (less suppressed) throughout tx #4; 6) I didn't get a scalp rash (folliculitis) like I did with tx #2; 7) I didn't get hives like I did with tx #2; and 8) the "burns" (hand-foot syndrome) on my feet weren't as severe as with tx #3.

    How's that, Robin?  That should make you feel a little better about #4.  Except for tiring more easily (and being bald, of course), I'm pretty much back to normal physically.  I still have the urge to be lazy, though.  Oh, and Sandy, I can't figure out the "tightness" over my mast incision and chest wall.  It's almost like it felt a week or so after my mast, when the pain was gone but the muscles and connective tissue were all tight.  I've started doing the old, familiar stretching exercises again, and I feel like I've regressed back to that post-surgery stage.

    otter

  • VBG
    VBG Member Posts: 75
    edited June 2008

    Hi All,

    Checking in...,.

    Catlover....okay today I am still not bald...shedding more but still have full head of hair!  I cut my hair short so people that have not seen me think that this is my wig...so funny....still wake up everyday and check my head to see if my hair is still there....tomorrow is day 19!

     I went for my fill yesterday, first since since chemo started. and my PS is very pleased with my rad side!  He mentioned that sometimes during tattooing of nipples he used brown color to "fix" the black tats from rads....I may ask him to do this during my exchange surgery!  ( I still have my own nipples/areolas).

     Hoping that I continue to feel good for tx 2 which is on Wed.  My only SEs are sore nose, abdominal pain and flu like symptoms which all lasted about 5-10 days!

     Hoping you all have a great weekend!

    Valerie

  • catlover44
    catlover44 Member Posts: 78
    edited June 2008

    Valerie, that's an idea:  let people think the new 'do is your wig...hmmm...  Mine's too thin now to pull that one off.  Although not terribly funny-looking yet.  I sleep in my little baby caps and just watch more puddle up when I take a shower every morning.  Oh well.  I guess you're a week behind me, tx-wise and hair-loss wise?  I'll keep you posted on the continuing saga of the disappearing hair so maybe you'll know what's around the corner for you!

     I'm sure you'll have a good #2 and all will be well!  Do you take anti-nausea stuff as preventative for a couple of days after?  If so, which one?  I'm noticing regional similarities in things like that, number of tx's (4 vs 6), etc.  Interesting.  I just hate the way my anti-nausea med (Compazine) makes me feel, and I have either Zofran or Phenergan I could take instead. (Or maybe I don't need any...I haven't tried going without!)  I told my onc. and she said it could either be the med or just effects from the chemo, but both times my mood mysteriously came back to normal once the Compazine was out of my system.

     Happy weekend to everyone!

    Terri

  • VBG
    VBG Member Posts: 75
    edited June 2008

    Hi Catlover,

    My onc has me on zofran, compazine and ativan as needed.  Zofran is the number 1 medicine and I am told to take it no matter what on day 2 and 3 and the other 2 are as needed depending on how I feel.  I am being treated at UCSF here in CA.

    Funny with my hair....it is very curly so I do not brush it and it is also dry so I do not wash it everyday.  I think this is helping it stay in longer!!!!  Do keep me posted on your saga as I thought by now I would be in my wig or hats!

    I have a bunch of college girlfriends coming to visit in Sept and today I decided that they should all wears hats or wigs when they are here as a show of solidarity!  I actually think this would be so funny and help make the weekend even more fun for all of us!  After all I am not asking them to shave their heads!

    Wishing everyone a great night!

    Valerie

  • MsKarin
    MsKarin Member Posts: 105
    edited June 2008

    To All,

    After day 2 or 3 until about day 9, the back of my arm feels almost like it did after SNB. Can't really describe. It's that weird feeling. About halfway between shoulder and elbow. It has happened both times now and then gone away. Both times I was freaking out thinking it was Lymphedema because of the heavy, tightness type of feeling but NO swelling involved. Have any of you also experienced this?

    Sandy,

    I think your post is the first time I've seen someone mention the weak knees. If it was posted else where I missed it. After about day 5 I get it mostly in my right knee and it lasts through about day 17 or so. Sometimes it feels as though the knee wants to give out. Doesn't hurt, just annoying. During #2 I also kept my mouth cold, drinking ice water and eating ice pop. No soreness of mouth at all. I also used Biotene and salt water, baking soda rinse.

    Enjoy the day, Karin

  • beachmom13
    beachmom13 Member Posts: 85
    edited June 2008

    Karin, I have that same feeling in the back of my arm and shoulder.  I starts, as you said about day 2, but I don't remember how long it lasts.  It's like it numb.  I don't have feeling in that area the rest of the time, but now it's different.  I also feel like a knife is stabbing at the ANB incision site - not constant, but off and on during that same time.

     Hope everyone feels good today.

    Lee

  • otter
    otter Member Posts: 757
    edited June 2008

    Lee and Karin, I have exactly the same thing going on at my mast/SNB site.  It wasn't so obvious after TC tx #1, but since then it has been way too apparent.

    Now, 3-1/2 wks after my last (4th) TC tx, my mast site (no recon) is just as tight and stiff as it was a couple of wks after my surgery in Feb.  The underside of my arm and my shoulder feel "dull"--more numb than they have been in a long time, and maybe a bit tingly.  I've resumed doing stretching exercises, which I never really quit doing but had sort of replaced with the normal movements of life.  The post-surgery stretching exercises cause nearly as much discomfort now, as they did in February.  That's after having regained all my range-of-motion and having been proclaimed "A-okay!", with no signs of LE at all, by a certified LE therapist in early April.  That was just a few days after I started chemo...

    Anyway, we know that Taxotere can cause fluid retention.  The mechanism through which it does that is still kind of a mystery, but apparently it's more than just transfer of water and electrolytes from the blood into the tissues.  Taxotere causes small proteins to leak out of the blood and into the tissues, and the proteins attract more fluid.  Eventually, if the escaped proteins and fluid aren't recaptured by the lymphatic system, their presence in the tissues can lead to long-term tissue changes and even fibrosis.

    Guess what that sounds like?  The same thing happens with untreated LE.  I started a couple of threads awhile back, asking if anyone knew of a link between Taxotere and increased risk of LE.  Some BCO members thought there was a temporal association--they thought they had developed LE shortly after getting Taxotere.  Nobody knew for sure, though; and the literature search I did wasn't helpful.

    I mentioned my mast site and under-arm swelling to my onco a couple of times mid-treatment, but she wasn't concerned.  She said if the swelling went down every night (which it did), it was just "edema" and not LE.  For sure I'm going to ask her about it again, when I see her for my 3-month follow-up in August.  I'm seeing my onco surgeon that same day, for a 6-month follow-up (busy day!).  I'll ask her, too, since she's the one who referred me to the LE therapist in April.

    Karin, I wish my "bald" looked as good as your "bald"!  Everybody try to enjoy the rest of the weekend!

    otter 

  • MsKarin
    MsKarin Member Posts: 105
    edited June 2008

    On the subject of bald and shaving

    First Otter, thanks for the compliment. Now to my question.

    When shaving, what attachment if any do you use on your electric trimmer? Mine has a 1/4, 1/8, 1/16 or use none. For this initial shave we used the 1/4. I think I would like to go shorter. I am way past the sore head stage so I don't think very short stubble would be a problem. Has anyone shaved just using the trimmer without using any of the attachments?

    Enjoy the day, Karin

  • Senora
    Senora Member Posts: 13
    edited June 2008

    Catlover, I also have a port that drives me crazy.  I have had my port since the end of March and I have had constant problems with it.  I have pain in the area more times than not. I feel like it pulls everytime I move the wrong way.  And, I also can not sleep on my side!!!  Most of the time when the nurses try and access it for chemo, I have one kind of problem or another.  I even have had to have two different scans done to make sure that it is still in the correct place.  You might want to mention to your oncologist or the nurses that you are having some problems with it.  Mine wanted to know immediately when I started having problems, especially when I had pain.  Goodluck with yours and I hope your problems subside soon.  Tomorrow is supposed to be my last tx, so I hope and pray that I will soon be able to get this out!!!  Everyone take care!

    Senora

  • catlover44
    catlover44 Member Posts: 78
    edited June 2008
    Senora, it's good to know I'm not the only one (as with all things on this board)!  I've mentioned to the dr & nurses that it feels this way, and they press all over it (that really helps a lot Undecided) and I suppose satisfy themselves that it's still in the right place, although it feels like it moves back & forth a lot in there.  It's probably just a fraction of an inch when it moves, but as you know, it feels like it's stabbing one muscle, pulling another, and generally just causing a ruckus.  I'm glad you're about ready to get yours out, hopefully!  I have 2 down, 4 to go, and believe me, the first question I'll be asking is, "When is my appt. to get this thing out??" 
  • Tigwin
    Tigwin Member Posts: 115
    edited June 2008

    TN-Michele, .  My first cancer was back in 1989 and I had radiation and chemo at that time. It was not breast cancer.  It was in my upper neck and chest but not my breast tissue. Very rare cancer and very happy to have gotten well.  Due to the radiation being such a high does 19 years ago we all felt it would be best to do the tram surgery to be safe. The implants would more then likely be rejected due to the elastisitiy and blood flow. I am fine doing the surgery and if you are considering it you are welcome to email me directly to ask any quesions. I would be happy to answer any questions you may have.

    SlortzHi I live in south county, aliso viejo.  I do not do the wig thing, I like the scarfs the most. This heat wave we have been in and out of keeps me bald when ever I can but going out I put the scarf on. Hope things go okay for you. I am having my surgery at City of Hope...looking forward to it in August.

    SharonS...For the hot flashes I have just started using vitamin E 400 iu on time a day and it seems  to be helping a bit. Congrats on the hair YEAH !!

    Robinc ...number four was one of my easiest tx's....dont worry we are all different. Drink a lot of water before and eat very healthy....positive thoughts your way.

    Senora and catlover, I use a pillow to put between my breasts and sleep on my side at night..this really helps the port not bother me. If you are a side sleeper give it a chance. Good luck.

  • Senora
    Senora Member Posts: 13
    edited June 2008

    Catlover,  I know that I feel like mine moves all the time as well.  My nurses say that mine is very positional because many times for them to access it correctly, I have to move my arms above my head or back behind me!!!  I definitely provide some entertainment for others in the treatment room!!  Believe me, my first question tomorrow will be when can I get this thing out????  And if I hear not yet, then my onc and I are going to have a long discussion. 

    Tigwin, thanks for the suggestion on using the pillow.  I do sleep on my side and I always feel like my port is pulling.  Hopefully, the pillow will help.

    Everyone take care.

    Senora

  • sandym
    sandym Member Posts: 70
    edited June 2008

    otter, Lee and Karin,  The tightness and discomfort in and around my surgery is really getting to me and I get that knife stabbing pain down my sides - not near any incisions. Your mention of fibrosis, otter, has me thinking.  A call to the PS is in order, I think. I'm  due for a fill appt in 2 weeks having postponed my usual 3 week appt. until after chemo was finished. I'm doing the stretching exercises more often but I'm thinking it's time to schedule PT again. I was seeing a certified LE specialist also but found it too much once chemo started.  Hope I'm not going to be sorry I stopped.

    Lee, my knees aren't weak anymore this time - Yea!  But they were a major annoyance after my first 3 tx's.  But now they hurt. Our car was rear ended a couple of weeks ago.  My husband first complained about one of his knees and then mine started bothering me.  I've had knee pain for a couple of years so I didn't think about it at first but now I'm having trouble walking.  Neither of us noticed any problem right after the accident. So is it the accident, Taxotere, arthritis? Another MD visit, I guess.

    Love to All, Sandy

  • otter
    otter Member Posts: 757
    edited June 2008

    Karin, I can't help with your question about the guard for the clipper (is that what it's called?) since I never shaved my head.

    I did get sick and tired of the long scraggly hairs that were left, so I trimmed them pretty short (maybe 1 to 1-1/2 inches) yesterday.  I figured I would need to trim them eventually, so the new hair (when it finally arrives) wouldn't be so uneven.

    And, now, guess what?  The scraggly hair (hairs?) that I trimmed wants to stick straight up!  Not a good sign.  I'll bet that means my brand-new hair will stick straight up in the air, too.  That's definitely not the look I wanted...

    otter 

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