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Taxotere, Carboplatin and Herceptin

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Comments

  • 07rescue
    07rescue Member Posts: 4
    edited February 2009

    I had my first TCH a little over three weeks ago, and because of earlier kidney damage from lifelong endometriosis I ended up in complete kidney failure after the chemo. I had asked them to keep the carboplatin dose down to around 400 mgs total, and give me an extra bag of fluids with the treatment, but because I look so outwardly healthy and strong spirited they all overestimated me and wanted to go with the full 600 mg dose they had planned, and thought an extra bag of fluids would overload me. Wrong! When I went back for the second treatment they were horrified that my kidneys had bottomed out and were no longer functioning. At first they weren't going to do the second treatment at all with my kidney function flatlined, but then the oncologist agreed to do it my way with the Carbo at 400 and extra liter of saline added. The treatment took 12 and 1/2 hours to get through, but when I went back again one day later, today, for another bag of supportive  hydration, my creatinine had gone back to normal and GFR (kidney function) back up to my baseline of barely normal (61). I can see they will give my suggestions a little more weight now.

    There is otherwise no point to doing chemo that will destroy my kidneys to prevent a breast cancer recurrence when my risk is only 15%. But it pisses me off that they didn't agree to do it my way, the safest way, to begin with. Kidney failure causes irreversible damage, in my case interstitial fibrosis, and gradually erodes my future kidney function with each time I have to go through it, and after GFR goes under 60, it becomes progressively worse because the kidneys cannot keep up with the body's demands. I don't like teetering on the brink of progressive kidney failure, and have doctors take those kinds of chances with my vital organ function. Especially since once you have cancer, it's almost impossible to get a kidney transplant. Dialysis is a horrible way to have to live, and would be my only alternative.

    Just venting, it's been a rough three weeks trying to get through this. 

  • Lisa1964
    Lisa1964 Member Posts: 760
    edited February 2009

    Wow 07Rescue.  I think I would be looking for a new oncologist; one that is willing to work closely with my nephrologist!!!  I have know someone with  intersitial fibrosis and it is not pleasant.  I also had a dear friend that was a kidney transplant survivor (10 years) also not a walk in the park.  Good luck with the rest of your treatments.

    I am going riding this morning!! Yippee.  It is going to be very cold on my bald head satrting out (40) but is supposed to warm up to a sunny 65 today.  Still not Fla weather, but getting better!

    Have a great day everyone.

    Lisa

  • my2boys
    my2boys Member Posts: 124
    edited February 2009

    Have fun riding Lisa.

    07Rescue....I read your post and I feel so sad for you.  I know when I feel like my oncologist isn't listening to me I get VERY upset.  As a matter of fact, I have a meeting with my doctor today and once again I wasn't heard the first 3 times I tried to explain something to her.

    Cancer is hard enough, but to have to worry about your kidney function on top of everything else is almost too much.  My prayers and wishes are for you and your doctor to find common ground in your discussions, or for you to find a different oncologist.

    Shari....please talk to your oncologist about why you're NOT getting herceptin???  This is a "must have" for all Her2+ girls.  Let us know how you're doing.

    My best wishes to everyone for a good day today.  Stay strong ladies.

    Anne

  • duneoaks
    duneoaks Member Posts: 94
    edited February 2009

    Sailor, we must have started TCH on the same day, and I am glad to hear that you are doing well.  I have had a couple of stomach issues, but nothing major.  I agree how helpful this site has been for me over these last few weeks.  Thanks for the advise and support.  Two suggestions I have for the nose and mouth are Ayr nose GEL for sore noses and Biotene toothpaste--they have helped me with my dry and sensitive nose and mouth.

  • traci1970
    traci1970 Member Posts: 104
    edited February 2009

    SMILE   I took Herceptin every week and taxotere and carboplatin every three weeks.  When I finished my Tax and carb we upped my herceptin dose and I get it every three weeks now.   This actually worked out well for me.  The herceptin makes me feel blah for one or two days so I am glad I was getting a lighter dose during the big treatments.  I did not mind going in every week for my herceptin because it gave them a chance to check my blood weekly.  Don't worry too much.  I will keep you in my prayers.  Message me anytim.  :)  Traci

  • cupcake7
    cupcake7 Member Posts: 321
    edited February 2009

    07:  I am so sorry to read your post of your problems you have had.  That is ok to vent, that is why we are here.  I feel the same frustration of them being all mighty dr. and we know nothing.  I do realize I don't have their education and I appreciate all the years they studied, but they do not know everything and I think we are the PATIENT and it is OUR body and we SHOULD have some say and input.  I have the radiologist now that is pissy because I dared to bring something to him of a suggestion.  I don't care it is my body and I have already seen some failure in my health treatment and I am not going to go along and just do everything they say without questions.  I didn't just fall off the turnip truck and although the chemo has fried some of my brains there is still some that is working up there.  So yes I know exactly what you mean and you go girl!  For one right now I want to know why I am not going to get Herceptin during radiation when most here do.  If there is a reason that is fine, but I want to know.

    Had the brain scan today...bad news...they didn't find anything inside the skull.  I guess I go down with another rarity.  Functioning woman with no brains...just like breast cancer with no tumor...lol  I was sat in a room with coughing people again for the brain scan, and got up and moved into another area.  I am not going to repeat the last two trips over there and end up sick.  Second rad tx.  I was sure tired when I got home.  Sat down and dosed off.  The ladies in the church made up some homemade bags with all sorts of goodies in them for the cancer patients in chemo.  We put a sprial note pad or journal book, and pen, a puzzle book of crosswords or circle the name, hand lotion, lip balm, rolaids or tums, candy, cheese and crackers, a book of bible promises, and a clean-ix package.  Any one in the chemo chair gets one.  My way of giving something back.  I remember when I got a goodie bag it made me feel so special and thought of.

  • sailor35
    sailor35 Member Posts: 38
    edited February 2009

    Instead of being fatigued--and after several days of fatigue--I have spent the last 2 days and 3 nights feeling like I am on speed  or had 10 cups of coffee.  This is Day 10 of my first TCH cycle and I am not taking any medication.  Except for lack of sleep and concern that I will crash, it's not bad, but it is strange.   Anyone else ever experience this? 

    duneoaks:  You and I are indeed on the same cycle. I am on for 6 rounds every three week.  My second chemo is scheduled for February 18.  Thanks for the suggestions.  I am going to give them a try. 

  • Smile2006
    Smile2006 Member Posts: 132
    edited February 2009

    Finally received my results from the pet scan....all is clear except my ovaries are enlarged.  So I have an appointment Monday with my Gyn.  I did talk with the nurse at the onc and I am going to be taking herceptin every with with Carboplatin and Taxotere every three weeks for 6 doses, with herceptin for 12 months, and rads after chemo (while I am still on H).  I dont know how I am going to last a year with being stuck with a needle....will have to take one week at a time.  I do not want a port. 

    Hope everyone has a wonderful weekend...its Gasparilla here in Tampa..and it looks like it will be a crisp 74 tomorrow. 

  • Lisa1964
    Lisa1964 Member Posts: 760
    edited February 2009

    Brenda - That is so nice of you to make the goody bags.  What a very thoughtful gesture!  Sorry you don't have any brainsCool Maybe you should hook up with the Wizard of OZ character!!Laughing

    Shari - Why the hard stand on the port?  Your life for the next year will be SO MUCH EASIER with the port.  Chemo does a number on your veins and each tx will make it worse.  I was poked so much with all the tests and surgery before I got my port, once I had it I was tickled to death -- an I originally did not want it either!  Now I will admit that I will be thrilled to get rid of it too when this is over!

    The east coast of FL is going to be nice today.  I am going to go out and do some much needed "housework" in the barn before my next (FINAL) TX.

    Have a great day everyone.

    Lisa

  • gramma23
    gramma23 Member Posts: 482
    edited February 2009

    Smile2006, I know it is scary to have the port but you really need to think about it. they implant it under your skin and it has a rubber bump so they can just put the needle right in and give your tx. I had the same tx schedule and still have my port until after June since I will finish H then. they can use your port if you need blood and that may happen. I hope not but you might. I had to have 7 units which is not normal but it was so much easier with the port. I know it feels odd and looks odd but who cares it is very helpful. I know some who started out without one but then got one so talk to as many as you can about this. I am finished with TCH and I am doing radiation right now and H every 3 weeks. so that is 3 doses of H and when I was getting the TCH I went every week.

    duneoaks, I am glad you and Smile are together. It helps to have a buddy doing this at the same time to compare notes or just complain. Cupcake and I were on the same schedule but sometimes mine had to wait a week because of my counts. I always hated that because I was wanting to get it done but it turned out okay. Right after I finished the TCH my hubby had to have triple bypass so at least I was finished with the bad stuff.

    Lisa I am glad you feel like riding. I wear a scarf and a stocking cap when it is cold and that way I can shed to stocking cap when it warms up. I am a sissy I guess when my head is cold. We are supposed to have nice weather for a couple of days and then some thunderstorms but we need the moisture. Have a good time!

    Cupcake I most certainly would find out why no Herceptin. I would take it over radiation myself but that is just me. I take it every 3 weeks. It may be a misunderstanding with the onc or radiation doc. I hope so. Keep me posted on how that turns out. I am doing rad. and H on Feb 11 so they told me at work not to worry about working Thurs. I am sure when I am able to they will push all the days no one wants on me. I almost feel like a new person there. I am supposed to be a shift leader but I guess I lost my title. I still get the same pay though so that works for me.

    I hope all you girls are doing good with tx. Hang in there it will be over soon. Do be your own advocate though because it is your body and you know it better than anyone else. Cancer docs and Nurses know about cancer but they don't know about everything. this is why I had problems because I had other things wrong with me.

    Carolyn

  • gramma23
    gramma23 Member Posts: 482
    edited February 2009

    sailor, I can not explain your energy. I guess just be happy and hope you don't crash. I was always so sleepy and fatigued but then I always had low counts. Maybe your counts are really good. I know my fingernails grew good while on TCH and now they are breaking every time I do anything. I guess everyone is so different and yet so alike in some things. I always got high on the benadryl they gave me during tx. Does it make you sleepy? Do you get the tylenol and benadryl at tx time? I hope all goes well with you though and you feel strong all through this.

    Carolyn

  • traci1970
    traci1970 Member Posts: 104
    edited February 2009

    Shari, I would never suggest you do something you did not want to do.  I would like to tell you that I am sooo grateful for my port.  I would have never made it without it.  I hate being stuck, I act like a child when it comes to needles (well, not anymore).  My surgeon explained it to me like this...he said the veins in your arms are like regular roadways, the blood is not moving very fast.  The veins up where they put your port in are more of a highway and that blood is moving alot faster and goes out in different directions.  It does not damage your veins like it will in your arms/hand.  My port has never bothered me.  I forget I have it and I will keep it for quite a while after I finish this.  I just wanted to tell you that is not bad at all.  I know it sounded horrible to me at first too.  Everytime I get stuck in my port it  takes two seconds and they are in EVERY TIME!  No pain.  Please think about it.  Ask any one you meet that has one.  :)  traci

  • cupcake7
    cupcake7 Member Posts: 321
    edited February 2009

    Shari:  I have to chime in too with being happy with a port.  I didn't want to go out, but found out they didn't need to put me out to put one in.  They just gave me a local.  When they go to access it they put this freezie type spray on it and you take a breath and blow it out and they snap it in.  Like Traci says you don't feel it at all.  I was worried mine is on the left side and I was thinking this poison going right through the heart and they said no the direction is going up and travels away from the heart.  With Lisa I would have to ask why don't you want one?  I'm sure glad you got it all figured out on what chemo cocktail your getting.

    Lisa:  Wiz of Oz now that is funny.  I am so happy you are going for the final.  I'm tellin ya it will be a breeze cause you know it is O-V-E-R!  You having rads after?  I'm just starting and it is so easy compared to what you have went through.  It's just a mop up kina treatment.

    Carolyn:  Yes we sure have walked the walk didn't we?  You have been a good camp buddy through it I just want you to know.  Your post always was inspiration to me.  My onc comes back to work on Monday and I am going to have an e-mail waiting for her on the Herceptin.  I'm sure it has to be a mistake.For sure you are right in this is our body and we have lived in it far longer than the dr and nurses.  We know it and need to be a team member on the treatments.  Good advise.  My joints are killing me today, rain is here.  Just plays havic with my Arthritis.  I am still having a terriable dryness with sex and this just ain'ta kickin it.  I am going to change GYN dr and try and get something done.  This has to be fixed.  I am estrogen plus then I can't take the estrogen based gels for lubricants and then the Amidrex I will be taking for 5 years keeps the estrogen low.  I think that is why I never had any problems with menopause cause my estrogen was so high, but now it is all over the place.  Outside of that I am feeling better everyday.  I think there is life after cancer now.  There for awhile I wasn't sure I would ever feel normal again. 

    Have a wonderful weekend campers...cyber hugs....

  • Bold
    Bold Member Posts: 306
    edited February 2009

    Hi Shari; I did not have a port and I am happy too. My veins are juicy and I am not afraid of needles. Everyone is different so please yourself.

    I was wondering if anyone has the shivers like someone walked over your grave kind. I get them frequently and never have before so it must be one of the drugs of the TCH.

    I am still getting headaches everyday for the last week. I am  thinking that it might be my sinuses or my eyes. Has anyone else had any vision changes. I t feels that I need to update my prescription on my glasses. All this and I am going for my 3rd of 6 on Monday (ugg). Oh my finger tips are sensitive and I have numbness on the bottom of my right foot.

    One more question how many of you got the ki-67 test done on Path report. Mine was 46. Anything over 20 is considered high. I would be interested to hear other her2 girls results.

    You know how my name is Bold. That is my real last name and the other day someone accidentally called me Bald instead of Bold. I know that it was a mistake as I had my wig and hat on and there is no way that it did not look totally natural. I have had people mispronounce it before and I was not the sensitive about it. I just could not stop laughing the guy must of thought I was nut. Humor is good.

    Wish me luch for Sunday. I am going to take advantage of the day as this is my favorite day 3 days before TX. Tomorrow I start with steroids and stool softeners. GRRRRR. Maybe Mexican food tonight and a margarita Yummmmm.

    Cupcake: how much estrogen do you have left in your endocrine system and what was you % on path report? I would like to know as I have been getting a PHD (so to speak) in adjuvant hormone treatments. Have not made my mind up weather I am going to take anything or not yet. I may choose a holistic path. The SE are really something and I have to weigh the benefit and risk factors. Did you know that the Tamoxifen drug last year made over 400 million dollars. Yikes uh?

    Any who we will see. I still have lots of time and yuck to go through before I have to make that decision. I am also looking into the proton inhibitor radiation therapy. So much homework to do.

    Love to all.

    In solidarity

  • kjbell
    kjbell Member Posts: 454
    edited February 2009

    I did not want a port either.  After the mast and t/e, I did not want the pain from the port.  (I read some painful stories on these forums).  I have to take an ativan before chemo, but my veins are big and I don't really any problems geting the IV.  I will have tx #5 on the 18th! 

    Bold:  My last name is Belding and I can't tell you how many people say Balding instead.  It makes me feel like they know what is under the wig! 

  • plakatakr
    plakatakr Member Posts: 45
    edited February 2009

    Shari- I don't have a port either. I finished my TCH and am doing my Herceptin now. They say H is easy on the veins. So far, no regrets. 12 more to go.

  • my2boys
    my2boys Member Posts: 124
    edited February 2009

    Shari - Whether or not to get a port is a very personal decision.  I chose to get one, but I remember going back and forth about it beforehand.  I guess I chose to have a port because one of my arms is out of commission because of the lymph node issues.  I was worried about only having one arm to use and even that arm had one node removed, so it probably isn't a good idea to overdue it.  I will say that I have been happy with the port and it makes it much easier when it comes time for blood draws or chemo treatments.  Anyway, whatever you decide, good luck.

    I'm getting ready for Tx #6 this week.  I feel the emotions already starting to creep up on me.  I just keep thinking that this time next week I will be done with chemo...HOORAY!

    Has anybody heard anything about the possibility of Herceptin being approved for two years?  My doctor mentioned something to me that there may be a decision on this within the next year.  I was actually considering holding onto my port for a while to see what/if I was going to be getting Herceptin for longer than the next 8 months.  I already told my doctor that I would gladly continue on with Herceptin for as long as my insurance would permit me.  After all, how many women have lost their lives waiting for this drug to be approved and we ( the lucky ones ) have it here for us when we need it.  My doctor actually used the words "you are one of the lucky ones".  Guess what ladies....you all are the lucky ones too!

    Stay strong, my friends.  Have a wonderful night.

    Much love,

    Anne

  • Lisa1964
    Lisa1964 Member Posts: 760
    edited February 2009

    Carolyn I am so glad you are doing well.  You will get thru the rads, no sweat!  I hope the Okie weather letting up on you.  I have riding buddy that is from Pryor and she swears she will never move back there because of winter!

    CUPCAKE - No rads for me.  That was one of the deciding factors when I went for the mastectomy vs. the lumpectomy.  In my case, lump meant rads and mast meant no rads.  I was told that if I had a lumpectomy and the cancer came back, I could never have that area re-radiated.  After having lost my mom to BC mets at only 65, I chose to have both sides whacked off and be done with it.

    Anne - We are DONE!!!!!!  Can you beleive it?!  Last October it seemed as if this day would never come, and here we are now on countdown

    Lisa

  • mason204
    mason204 Member Posts: 36
    edited February 2009

    Everyone's been so helpful to me I thought I'd add two things I remembered from my radiation treatment I had years ago that was helpful.

    The first was defining tiredness.  People always told me that radiation caused fatigue but I couldn't comprehend exactly what they meant by "fatigue" or "tiredness".  A doctor told me that it's the kind of tiredness you feel after working 7 days straight with no time off.  That put it into better perspective for me. 

    The second was, if you feel itchy, don't scratch.  After a few weeks of radiation, I found that I had a small patch that started out itchy.  In fact, I'd find myself absentmindedly rubbing it from time to time and I hadn't realized it until the radiation tech caught me.  Well, near the end of my treatment, it was this one spot that actually became irritated and appeared like a "burn".  I often thought if I hadn't scratched (or rubbed) the spot, the skin wouldn't have broken there.

    Compared with chemo, radiation was a walk in the park.  I hope that helps.

  • traci1970
    traci1970 Member Posts: 104
    edited February 2009

    Thank you mason.  I was wondering how bad it may get as I finish the last two weeks of rad.  I am almost there. I am really tired as the week goes on and I recover a bit on the weekends only to do it again on Monday.  How are things going with your treatment?

     Shari, you have gotten a good bit of personal experiences with the port or no port question. We are all different and what works for one may not work for others.  You have to do what is right for YOU. You will know what feels right.  

    Bold... yes, I did have a weird shiver when I was doing chemo.  Sometimes it was only on one side and I thought it was odd.  It has since stopped completely.  I am glad it was not just me that had that.  It is weird isn't it??  It just comes from no where.

    Ann and Lisa...CONGRATULATIONS!  You did it.  It is almost over.

    Everyone have a good week end...traci

     

  • cupcake7
    cupcake7 Member Posts: 321
    edited February 2009

    Shari:  Wow girl you got it going on the ports.  lol  I think the post of it is a very personal decision is correct.  I did because I have tiny little veins that are buried deep and they are rollers.  Meaning the needle gets next to them and they roll out of the way.  I have so many cotton balls on my arms and hands when they get done trying to access a vein I was a good candidate for  a port.

    Bold:  The path report was positive, 100%, 3+ strong on the Estrogen Receptor Progesterone Receptor -positive, 30% moderate.  I do know the Arimidex is very expensive...$425.00  for 90 tablets.  A years supply is around $3,200.00.  That is terriable they charge so much to keep you alive. 

    Anne: Congrats on your ending this chemo journey.  I am so happy for all you guys ending it.  I am thankful I had my cancer at this time of Herceptin because without it I may have had 4 months to live.  I am now cancer free.  I won't be taking it longer cause my baseline MUGA was 62%  in three months it dropped to a 61% and the last one is a 60% so it does do some damage to the heart for us older folks.  I did well through the year, but I think that is why I will be on Arimidex.  Wonder if there is SE for the heart with those?

    Lisa:  I had a Modified Radical Mastectomy because the cancer cells was in my Axilla node and they really took a big hunk out of that and told me that if it came back it would be in the chest wall and I would not want it there.  So that is why the rads for me.  Did you take the BRCA test one and two beings your mom died of it at 65?  I did and was not positive for it.  Nice to know.

    I got my Aloe Vera gel today and beginning to use it even before I get red.  Planted a plant too so can break off a branch and use it too if needed.  I had the chills also in the beginning of chemo and then would wake up just sweating. 

  • jap
    jap Member Posts: 43
    edited February 2009

    Hi cupcake,

    My echo went from 60 to 57 which my doctor said was of no importance.  It can vary that much depending on the time of day the test is administered. For instance it may be 57 in the morning and 60 in the afternoon.

    Jo Anne

  • Lisa1964
    Lisa1964 Member Posts: 760
    edited February 2009

    Cupcake:  I did do the genetic testing, my onc practically demanded it as he was my mom's onc also.  And, my brother has three girls  (ages 25, 23, and 4) and I wanted to make sure if they were at risk they would start getting early detection.  Praise God!!  I am BRACA negative.  That was a huge relief.  I also agree with you on the additional Herceptin.  I am the ONLY one in my family to NOT be diagnosed with heart disease by 40.  My base MUGA was 68 and I get the results of my second MUGA in the morning.  My onc has me seeing the family cardiologist this coming week just as a precaution.

    Bold Don't waste your time and money on new glasses.  Chemo can effect the eye sight but in most cases it is temporary. Hang in there, it is just one more of those irritating little things that comes with chemo.

    Hope for All:  I have a countdown for chemo box on the homepage of my puter.  It was such a wierd feeling this morning to see it read 1 Day till last chemo!  I really don't think it has sunk in yet.  I have another box that says 41 Days till I go hatless! Now that one could be a bit optimistic but I based it on Cupcakes phenomonal hair growth and thru my birthday in as a target for the heck of it.  If I have enough hair to go hatless for my 45th birthday that will be the greatest present ever!  My how times have changed in 6 short months.

    A note for everyone and anyone: When I found out I needed chemo, I went on-line and bought a giant selection of very nice scarfs.   All different styles and colors - I never even tried them on.  I used the "skier's head covers" when my hair was falling out to keep it from spreading all over the house, and then I just wear baseball caps.  I bought the wig, wore it one time and hated it.  So I have this box of very nice scarfs ($200 worth) that need a home for free.  If anyone is interested, just PM me your address and I will pop them in the mail.  If I don't hear from anyone on the BB, I will take them to my local cancer society, but I wanted my camper buddies to have first shot.

    Have a wonderful day ladies.

    Lisa

  • gramma23
    gramma23 Member Posts: 482
    edited February 2009

    Bold, I had O% on hormones,HER-2/CEP 17 signal ration>5.1 amplified, Ki-67- High > 3%, High S phase also Bcl weakly pos.

    Ductal Carcinoma grade3. 4 out of 22 lymph nodes involved. Largest node was 2.5 cen. I had clean margins after surgery so they are saying I am 2b but I am not sure if that is because of the surgery since they graded the tumors III. It is all so confusing to me so if you have anything to help me understand all this I would appreciate it. Oh and the lab said the tumor was 3.5 by 2.3 by 2.2 cen schirrous gray-tan mass. I am not sure what all this means but I know I should have gone when I first found it. Maybe it would not have been this large?

    Have a good weekend everyone. Looks like we are in for some strong thunderstorms the first part of the week. Tornadoes this early? I hope not!

    Congrats on all who have finished #6 and I wish you no se

    Carolyn

  • rayhope
    rayhope Member Posts: 75
    edited February 2009

    Today is day 11 tx3 for me, and I am having a problem with my hands.  For the past 3 or 4 days, my palms have been red and puffy in the morning.  My fingertips are smooth feeling and a couple of places look like they could possibly blister.  I have managed it well by applying aloe vera gel and various lotions and creams.  I've tried sleeping with gloves but end up taking them off during the night.  It actually gets much better during the day.  I'm concerned that this could be the beginning of hand foot syndrome.  Does anyone know?

  • my2boys
    my2boys Member Posts: 124
    edited February 2009

    Ray - My hands never got puffy, but my fingertips blistered a little.  What worked for me was Aquaphor ointment.  I applied it once in the morning and once in the evenings.  They still look red, but but they are not blistering.  I hope this helps.

    Cupcake - Your words of wisdom have helped me through more than one bad day.  Thank you from the bottom of my heart.  My MUGA went from a 72 to a 66.  The doctor said not to worry because it jumps around quite a bit.  She said that if it continues to drop, she would have me tested more frequently, but the report also stated that my heart function was normal.  What JoAnn said is true about the time of day affecting the outcome.  I don't know about the side effects of Arimidex.  What is that for?

    Lisa!!!!!!  Congratulations.  Tomorrow is your big day!!!!!  What are you going to do to celebrate?  I cannot believe that our chemo days are coming to a close.   HOORRRAAAAYYYY!

    To all the newcomers....I was thinking last night that I should give you this little bit of helpful advice.  Please remember to keep a bottle/glass of water at your bedside each night.  If you awaken during the middle of the night, please try and remember to take a sip and swish it around your mouth before swallowing.  The TCH makes your mouth VERY dry and it was my experience that as soon as I started taking several sips of water during the night, my mouth and throat were less sore and seemed almost normal.  This was one of those dopey little things I did that made a HUGE difference in how I felt.  Good luck ladies.

    Hooray for the warm (40/50's) weather here in New York.  I was getting tired of the deep freeze.

    Anne

  • cupcake7
    cupcake7 Member Posts: 321
    edited February 2009

    Anne:  Thank you for YOUR words of wisdom.  I am not worried about the % cause it hasn't been bad at all, but I know the heart damage cannot be reversed and having heart problems in the past I want to protect it as much as possible.  Good advise to the newcomers.  See you guys are picking up the camper baton and have learned so much knowledge that you can pass it on to the newbies coming in.  By the way:

    New readers:  If you have just came in and started this sight because this is your dx please let us know so we can make a new list of you.  All the ones just starting chemo please let us know.

    Rayhope:  What is hand and foot syndrome? 

    Lisa:  Sweetie you will be in my heart and in my prayers tomorrow.  Each step you take will be the last one.  Each bad day will be the last one. 

  • rayhope
    rayhope Member Posts: 75
    edited February 2009

    Cupcake:  Hand-foot syndrome occurs when a small amount of chemo drug leaks from the capillaries into the palms of the hand and/or soles of the feet. It can cause redness, skin peeling and blistering.  From what I have read, it can become very painful.  The TCH combo we are on is not one of the usual causes of it.  However, taxotere can cause it occasionally.  There is a much better explanation on chemocare.com. 

  • bluedasher
    bluedasher Member Posts: 350
    edited February 2009

    Cupcake, actually, the heart function decrease from Herceptin does tend to reverse after Herceptin is stopped. That is one of the good things about getting TCH instead of AC-TH. The heart damage from Adriamycin tends to stay but Herceptin heart changes are reversable. On the BCIRG 006 2nd interim results slides, there is a graph showing average LVEF in the 3 years after treatment starts. Before treatment it starts at about 65. On TCH it goes down to around 63 but after 2 years comes back up to about 64 - almost where it started. For those who got AC-TH, it goes down to about 60 and comes back up to about 61 after 3 years.

    Carolyn, stage is based on how much the tumor has spread: its size, whether it has gotten into the lymph nodes and whether it has spread beyond that. So you are stage IIb because of its size plus the lymph nodes being involved. Grade is how aggressive the cancer cells are (i.e. how fast it is likely to grow if not treated) - that goes from 1 to 3. I think HER2+ is almost always grade 2 or 3. So they measure different things. They usually use Roman numerals for stage and Arabic ones for grade.

    Lisa, my2boys and mason - we are almost done. I expect to get my last treatment in 2 days but I'm not celebrating chemo being over until 3 weeks after that when I'm through most of the side effects of chemo. This last cycle has been a bear. I've had nausea on and off in week 3 which just isn't fair. My grandson is due to arrive in 2 weeks so my DIL and I are hoping that he comes on time or a little late so that I'm feeling better when he is born.

    rayhope, My hands didn't blister, but the last couple of chemo cycles I have gotten a rash on the backs of some of my fingers. My doctor said to put a mix of cortisone ointment and antibiotic ointment on it. That makes it subside. My fingertips are a bit numb but it is just the very tips so it isn't too bad. It is annoying.

  • mason204
    mason204 Member Posts: 36
    edited February 2009
    Cupcake - I've been on/off (mostly on) herceptin for about 3 years (maybe more?) now.  My MUGA's have gone as low as 52% where I stopped (coincided nicely with my 2nd mastectomy surgery last year) for a break.  I think I missed 2 treatments (every 3 weeks).  I almost fell off my chair when my next MUGA was 66%.  Only after missing 2 treatments!  Of course, with each MUGA my numbers are dropping again.  It's good to know that for some, even with a short break, you can regain heart function.  Also, one woman I did chemo with stopped because of low numbers, did exercising to strengthen her heart muscle and within a month increased her heart function from 45% (I believe) to about 68%.