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Comments

  • jaelsne
    jaelsne Member Posts: 39
    edited June 2009

    Hi everyone,

      I'm going for t/c #3 this upcoming Monday.  I noticed that a lot of people are experiencing a good deal more fatigue and other SE starting with #3.

      My question is--I have 6 treatments scheduled, rather than the standard 4.   Has anyone on this board gone through more than 4 yet?  I'd love to know how you handled it.

    Thanks,

    Jo Anne 

  • chelev
    chelev Member Posts: 417
    edited June 2009

    Lynn, it's a good thing you're planning to buzz it off soon, because it will drive you crazy - all of those little hairs everywhere (car, pillow, couch, etc.)!  I don't know if your scalp is tender, mine was at exactly 15 days, and I had to buzz it off to relieve the pain.  Now, I'm at 2 months +1 day past last treatment (april 23) and I've got the slow train to hairsville.

  • holtbolt
    holtbolt Member Posts: 302
    edited June 2009

    We are in SECOND place now but only by about 30 votes.... help!!  TY!!

    Thank you so much!  P.S.  It says you can only vote once, but if you have more than one computer I think you can vote twice.. lol  We are only in second place by about 30 votes and voting ends Friday!!!

    http://www.aeroforceone.com/index.cfm/pk/view/cd/NAA/cdid/1177058/pid/1175576

  • Firni
    Firni Member Posts: 521
    edited June 2009

    Jo Anne,  I did 6 rounds of TC.  By the 4th tx, I wasn't returning to normal again before getting the next tx.  I'll be honest, 5 and 6 were hard.  Lots and lots of fatigue and muscle weakness.  I could barely walk across the house to get to the bathroom.  My taste buds did not return between Tx after the 4th one.  I slept A LOT.  My edema and neuropathy did get worse during 5 and 6.  I was "down" for about 5 weeks after the last one before feeling any normalcy, but then rebounded pretty quickly.  What types of SEs are you having now with 1 and 2?

    Holtbolt, I voted a couple times and will do more as often as I can.  We want him to WIN!

    Chevlev, my hair looks like yours.  Except I'm 3 months out instead of two.  At two months I was still praying for hair to make any kind of an appearance. Are those your real brows?

  • chelev
    chelev Member Posts: 417
    edited June 2009

    Firni - Hi!  I had my brows shaped yesterday, so that is a combination of my brows and some brow pencil.  That is what I am trying to grow them into, but looking at them today with no pencil, they are getting there.  Mostly need to fill in more towards the front and back end, but I was getting a lot of growth underneath, hence the shaping.  Everyone keeps saying once the hair gets to this point it really starts filling in, but I'm still waiting for that to happen!!

  • Firni
    Firni Member Posts: 521
    edited June 2009

    Me too.  I can certainly see a big difference from the 5:00 shadow I had three weeks ago and the 1/4 in on my head now.  Well, the old man bald spot isn't 1/4 in long yet.  But I'm so ready to not look like DH any more.  From the back you can't tell if it's his head or mine!  Your brows are looking good.  I finally am to the point were I can draw mine on and they kind of look the same.

  • theredheadamy
    theredheadamy Member Posts: 4
    edited June 2009

    Hi girls,

    I have a question, and I hope those of you desperately waiting for your hair won't mind me asking....

    I have my 6th and final TC tomorrow.  My hair started to reappear just before my 5th treatment.  Did anyone else have this happen?  Should I expect to lose it again?  

    I'm just curious if I will be able to keep it (and really hoping!).

    Thanks

    Amy 

  • ktym
    ktym Member Posts: 673
    edited June 2009

    Nadine, good for you I agree its not just what you have gone through but you need to worry about other patients

  • jaelsne
    jaelsne Member Posts: 39
    edited June 2009

    Hi,

    I just found out that I need emergency breast surgery tonight to remove my implant.  I has almost worn through my skin and is ready to pop out!  I hate surgeries, so though this is minor, it is still upsetting.  I will be happy to get rid of the implant, though.  It has been uncomfortable from the very start.  Anyway, I had asked a question about 6 t/c vs. 4--so if I don't get back right away, you'll know why.

    Firni:  My side effects thus far are:  severe anemia (may need a transfusion at some point), hair loss (of course), don't feel like eating, fatigue.  No neuropathy or nausea.  Only had one day when foods tasted weird, but it went away.  I was surprised the other day when I tried taking m usual 20 minute walk, and almost crawled home after 10 minutes.  Don't know if it's the anemia or chemo, but I'm definitely more tired than normal.  

      Thanks for the reply,

    Jo Anne 

  • ktym
    ktym Member Posts: 673
    edited June 2009

    Jaelsne: sorry to hear about the surgery, hope this works for you

  • cherneski
    cherneski Member Posts: 149
    edited June 2009

    Jo Anne,

    I wish you peace.  I will be following you with the 6 TX I just had my first on Monday.

    Firni, Thanks for the info.

  • Firni
    Firni Member Posts: 521
    edited June 2009

    Jo Anne, I'm so sorry you have to lose your implant.  Also that it was so uncomfortable for you. Will you have it replaced down the road or do something else?   Hopefully you won't get a lot more SEs from the chemo.  I started getting the weird stuff right away.  What is your surgery going to do to your chemo schedule?  I'm sure your inability to walk 20 min is due to the anemia and the chemo both.  Are you getting Neutrogen or Neulasta shots?

    cherneski, sorry you're riding the 6 Tx train.  Hopefully all will go smoothly for you too. Just rest whenever your body wants to.  Did your onc tell you that you can't have manual lymphatic massage while you're in active treatment?  Mine didn't tell me that, but he kept putting off giving me a referral until I was done with chemo.  Then when I went to the LE therapist, she made a point of making sure I was done with Tx.  Something to do with moving cancer cells around in the body if there are any left.  Check with your onc.

    Amy, I never grew any hair during chemo.  So I can't answer your question.  But I know there are a lot of women here who did.  They should be chiming in.

    Dutch, how's Annabelle today? 

  • chelev
    chelev Member Posts: 417
    edited June 2009

    Joanne - so sorry you have to go in for yet another surgery - hope you are doing okay. 

    Amy - it is normal for some women to begin growing hair during chemo - I never lost all of mine, but lost patches of it after the first one and then some more after the second one, and continued losing the "old" hair while the duck fuzz first started shooting in.  Congrats on getting your last tx!

  • dimc
    dimc Member Posts: 16
    edited June 2009

    After a few weeks of poking around this site I'm finally jumping in.  I'm on the TC regimen x4 and had my first session June 10.  Pretty minimal side effects.  The most challenging part has been the Neulasta shot and the bone pain, very strange but controlable with Advil.  I'm feeling great this week before round 2 next Tuesday.  Did you all find that your side effects remained the same throughout each treatment other than more fatigue? 

  • greytmom_17
    greytmom_17 Member Posts: 48
    edited June 2009

    dimc - we started the same day.  Did your hair already start coming out?  Mine started night before last and yesterday was coming out FAST.  My friend buzzed it off last night so I could stay ahead of it.  As for the side effects, so far I only experienced some fatigue and muscle aches on days 2 and 3.  I go for my next on July 1, so we'll be right together.  Keep me posted.

  • Nadine54
    Nadine54 Member Posts: 162
    edited June 2009

    Jo Anne: Sorry to hear about your surgery.  I hope you are doing okay.

    Chelev:  Love seeing your hair...love the picture.

    I started regrowing hair after round 3.  Now 3 plus weeks after final treatment I have long peach fuzz hairs and shorter ones.  So glad we buzzed the head early on...saved the mess.

    Still taking the new medicines to try and rid my body of this darn swelling (edema).  Guess I am impatient but only two days of taking the meds but sure wish the swelling would go down a little faster.  Feet and walking is more like a duck. 

    Hope everyone is having mild SE's...we are getting through this one step at a time. 

    Many hugs and well wishes to everyone,

    Nadine

  • Firni
    Firni Member Posts: 521
    edited June 2009

    I saw my onc today for my 3 month check up.  He's been telling me all along that the edema in my foot is from the chemo.  Today he said if it was from the chemo, it would be in both feet.  It must be some kind of venous insufficiency.  He would not Rx a Medrol Pack.  Just told me to wear compression hose.  I'm really frustrated.  I may need to see a specialist.  Between my PCP whose sub-specialty is sport medicine, my onc and a podiatrist, can't someone fix my freeking foot?????

  • DUTCHinAtlanta
    DUTCHinAtlanta Member Posts: 29
    edited June 2009

    Firni - I hope they find a fix for your feet, and soon.

     The Medrol Dosepack definitely got rid of the swelling in Annabelle's hands and feet; and she's a much happy camper today.

  • Firni
    Firni Member Posts: 521
    edited June 2009

    Thank you Dutch.  I'm so glad the Medrol Dosepack worked for Annabelle.  Hopefully with no more Taxotere, this won't be an issue again for her.

  • Beach2Read
    Beach2Read Member Posts: 16
    edited June 2009

    Jo Anne, sorry you had to go through another surgery. How are you doing?

    Dutch, glad Annabelle is getting better.

    dimc and Lynn, I started the day after you on the 11th. Minimal SEs, I think, though the spinal pain every day I had the Neupogen was a bit exhausting. This week I feel just fine.

    Lynn, glad you got to get away.

    My hair started coming out  in strands when I washed or combed it yesterday morning, and much heavier this morning and I'm shedding all over. Hubby just called from work and let me know he had hair in his supper I packed for him. Felt so bad that I did not see it. He is suggesting we buzz it in the morning. :( I had hoped to TRY to wait until after I go out to ACS for wig appointment so told him we'll see in the morning. Mentally I was ready to do it Saturday or Sunday but even though I cut it shorter, it is making a mess.

     At any rate, I want to thank those who came before us for preparing us for the SEs, how to deal with them and the ray of hope that it is all temporary. It has made dealing with this first round so much easier than anticipated.

  • florbo
    florbo Member Posts: 32
    edited June 2009

    Holtbolt--I just voted.  I will vote again tomorrow.  Max certainly deserve this!

  • holtbolt
    holtbolt Member Posts: 302
    edited June 2009

    Got up on the last day of voting and Jarred the Man Fan is 75 head (he has 1162, we have 1087). I pictured him sitting up all night clearing his cookies and revoting. Well, winning like that is very sad for the man-fan. Help me win legit and give my son the thrill of a lifetime!  Please forward this to anyone who can click and vote today....Let's help one of the good guys win for once!!  By some miracle, can we catch him and pass him by 5p ? Help!

    http://www.aeroforceone.com/index.cfm/pk/view/cd/NAA/cdid/1177058/pid/1175576

  • ktym
    ktym Member Posts: 673
    edited June 2009

    dimc, everyone is different, but sounds like you may be one of the lucky ones with few SE's from this regimen.  Good luck to you

    Dutch, glad she's feeling better, been thinking of you two

    Nadine, hang in there

    Firni, I talked to another TC times 4 woman with that same problem.  She said a lymphedema consult and specialist helped her.  She wore the stockings too at times, but the therapy and massage really helped here 

  • Firni
    Firni Member Posts: 521
    edited June 2009

    Thanks kmmd.  This is not lymphedema in my foot.  I've been seeing an LE therapist for my arm and hand.  So now I'm looking for compression hose with compression in the toes.  I'll have to get a custom made "foot glove".  No idea how much that will be yet.  My insurance doesn't pay for any compression garments.  :(    I know the lymphatic system is tied into the circulatory system so maybe some massage will be beneficial anyway.

    I picked up a copy of the leg US I had done on June 1 to check for blood clots.  It says my veins and circulation are just fine.  So, I don't have venous insufficiency.  Onc was just guessing.  UGH. I'll have to call around to the medical supply places near me to see if someone will fit me  for my foot glove without an Rx from a Dr.  Then back to PCP to see what else he can think of.  Maybe a nice bone scan or MRI to check for ligament/muscle damage or really fine fracture somewhere. 

    beach2 read, it's better to have your wig fitted after your hair is gone.  Even if your hair is short, it takes up room in the wig and it won't fit the same when your head is shaved.  A good wig fitter will adjust for that, but it's better if the hair is already gone.

    Holtbolt,  I voted a couple hours ago and Max was at 1170.  I don't know where "Man Fan" is with the votes, I didn't look for him.  I'll vote again as soon as I'm done with this post. 

     I just voted and he's at 1204.  Good work every one, keep it up !!!!

  • lbrewer
    lbrewer Member Posts: 96
    edited June 2009

    I finished 4 rounds of TC and then had a complete hysterectomy including ovaries and cervix.  Surgery was robotic so hardly notice it at all.. Hot flashes are much worse tho.

  • ktym
    ktym Member Posts: 673
    edited June 2009

    firni, a foot glove just doesn't sound like fun in the summer. boo hiss.  and add that in for insurance not covering it too.  Are you as tired as we are of dealing with billing departments and insurance companies.

  • webwriter
    webwriter Member Posts: 63
    edited June 2009

    Firni, would they agree to Lasix and Potassium? I had a lot of swelling on my whole left side after my TCx6 DD and that did the trick. (Until I got on Chantrix and then I ballooned, Lasix didn't help and I had to stop.)

  • Nadine54
    Nadine54 Member Posts: 162
    edited June 2009

    Webwriter:  Help me out here chemo brain is in full gear...did the Lasix and Potassium work for you?  If so how long did it take to work and how many pills did you have to take a day? 

    I started Lasix and Potassium Tuesday evening.  I had to take two Lasix and one Potassium that night...the next day I took two of each twice a day.  Day three from then on I take two Lasix and one Potassium.  I am going to the bathroom more in the morning...then next to nothing rest of the day.  Last night my hands weren't swollen but are getting swollen again today.  No change at all in my legs and feet.  Am I just being impatient and does this take a while to knock the swelling down? 

    Anyone else on Lasix and Potassium?

    Nadine

  • Firni
    Firni Member Posts: 521
    edited June 2009

    Webbie, I may have to start begging and crying to get some stronger diuretic with a potassium supplement.  I don't know why after all the crap they pump into during chemo, once you're done every one becomes ultra conservative in treatments.  I guess your onc didn't think that if the swelling was from the chemo it would be on both sides like my onc said.  Sometimes I wonder if they just tell me crap to get me to shut up and go away.  

    Kmmd, All but one of the billing depts I deal with have been really accommodating.  I am sick and tired of my insurance hassles.  There are some things that I know right up front that they don't pay for.  I appreciate knowing that.  But every single thing concerning my recon has been a battle to get them to pay.  They know they have to.  Just do it and quit giving me grief.  They also fought paying for my oncotype dx for 8 months.  They finally just paid it.  I don't like the idea of a foot glove either.  Sounds hot.  Plus I'm supposed to wear it with open toe compression hose.  Between that and hot flashes, I may just burst into flames and become a little pile of ash...with edema.

    Ibrewer, congrats on finishing chemo and that your hysto was hardly noticable.  Amazing.  Hot flashes just suck.  I was given Effexor to help with mine now that I can't take Wellbutrin with the Tamoxifen.  I'll start the Effexor tomorrow.  Sure hope it helps!  I hope you can find some relief with yours. 

  • afighter
    afighter Member Posts: 10
    edited June 2009

    Hi Ladies:

    It has been interesting and informative to read about the various SEs.  My first TC treatment was a week ago today.  I think things are going well, given the circumstances.  The evening of Day 3 was my worst...a little vomiting, some body aches, fatigue...this continues to be a problem and it very ANNOYING as I am a go, go, go! person and HORRIBLE headaches.  There ain't no headache like a chemo headache!  Boy oh, boy do they get my attention and zap my energy!!  My scalp is very, very sore, but no hair loss, yet.  However, there won't be much to lose since I had almost all of it buzzed off before treatment began.  Right now, I would just like to have more energy, but that will be awhile since I have 3 more treatments to go.

    Althought tired, I manage to walk just about every evening...but not today, headache was too bad. I have one leg that swells after walking...didn't think much of it, but after reading your threads, I have decided I will let my Dr. know. 

    I see a PT on Monday to get advice on excercising my arm...trying to avoid lymedema.  Someone mentioned not having any treatments like this until after chemo was completed...didi I read that right?  I looked back, but cannot find the comment now.  I used to do light free weights and would love to be able to get back to it...even at a lesser level...just don't want to have completely stop everything.  I would like to stay as normal as possible.

    I have also become very emotional, lately.  Gee, what is going on?!  I cry at the drop of a hat.  I cry listening to the news...at all of the stories,..it is so out of character for me.  It has to be the drugs.  Sigh....this is a crazy journey, ladies.  I pray that God gives us all the strength and courage needed to win this battle.

    Love to you all,

    Afighter 

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