2009 Herceptin group

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  • plakatakr
    plakatakr Member Posts: 188
    edited May 2009

    I'm stressing out again. Tomorrow is another echo. Hopefully I will pass and continue Herceptin. I'm 1/2 way there.

  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    plakatakr~ How many times have you had trouble with your EF?? What was your EF now and what was it when you started? I have been off for 1month and tomorrow i get my echo also. Hope everything goes well.

  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Hello To All!!!,  I went though my 1st TCH treatment yesterday. Got there at 8:40am, blood draw right away, met the Dr., by 11am was getting my T. No s/e from the T, fell asleep, woke up and had some lunch, was already onto the C., fell back asleep. slept thouhg the H when my nurse Nancy said it was all done and time to go home!!! Was very nervouse, but the benadryl relaxed me and I slept through the whole thing.  After the treatment, went and picked up my wig w/my mom and she bought me the wig for my b-day present (05/28) and it looks really good!! Got home and slept again until 6:30pm DH woke me up and we ate some pizza for dinner, took my meds and sat up until 7:15, took more meds and went to bed. Fell asleep at about 8:30pm, woke up and 2am to take more anti-nausea meds, went back to bed and so far so good...At work today, little slow and out of it but doing great under the circumstances :)

  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    Lisa we told you you would be ok. Glad that everything went well for you

    God Bless and take care!   Karen

  • cheers247
    cheers247 Member Posts: 270
    edited May 2009

    Lisa, I'm glad everything went well for you.  I am also getting TCH every 3 weeks.  My first one was awful, I had very unpleasant SE, and they lasted 2 weeks.  Now I'm just weak & achy, and I tire quickly.  My next treatment is Tuesday 5/19.  I am bald now, and going to get a wig next week.  It's kind of ironic, in January I cut 16" off my hair and donated it to Locks of Love.  I was diagnosed 4/17, and now I need a wig.  I hope your treatments continue to go well.  You are AWESOME for working throught all of this!!!  I have had to take medical leave.  Have they told you when you are having surgery??  I have IBC, so I have 6mos of chemo 1st, then a double mast, & total hyst, then 6wks of rad, more chemo & another year of H.

    Karen, you are so wonderfully supportive!!! Thanks so much!!  Jessica

  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Hello to all, I am at work today and I feel terrible. I am sooo exhausted and will be going home to rest in a few minutes. Sat. & Sunday, did pretty well, got alot of planting done, drank a ton of water and now I am just exhausted. Have a bit of a sore throat...Achy all over, tired, a bit scared to even drive home, that's how exhausted I am....I'll be back to work tomorrow and I will update you all tomorrow on how I feel....as of right now....Blahhhhhhh...

  • Lorena82681
    Lorena82681 Member Posts: 33
    edited May 2009

    Hi Lisa - Just wanted to let you know that I too went through TCH, my first on December 26, 2008, my last on April 9, 2009... 6 cycles.  I will continue Herceptin until December but I wanted you to know that my first was also horrible.  I did not know if it was the chemo or the Nuelsta shot.  I too complained about the sore or what I called "grip" on my throat type of feeling.  I later found out by the time I took my 4th that I should drink a slushie to keep my throat cold while taking "T" (taxotere).  The same way they made me wear the frozen gloves and booties to prevent the chemo from burning my fingers and toes, the slushies would ease the burn on my throat... AND IT WORKED!  I most expecially wanted to share with you that I worked though all of my chemo.  I am currently on medical leave for I just had my mastectomy on May 6th.  So... stay strong... once you get home, get the rest you need for in my experience, although I worked, there were many days I just went home to eat what I could for I did lose my taste for many foods.. but I ate to stay strong and I would go to bed even if it was as early at 7pm.  I wanted to keep working to help me stay strong and it did mentally and phycially.  You can do it... sounds like you work in an office environment which helps.  Stay strong, you can do it.

  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Hi Lorena, Thank you for the good advice! I will try the slurpie in 2 wks. for my 2nd TCH tx.  Have a kidney infection, Dr. put me on antibiotics for that. At work today, feeling pretty good, besides the sore throat and the kidney infection...Went home yesterday, got home at 3pm, went straight to bed, DH woke me up and gave me dinner in bed at 6:00pm, went back to sleep and slept all night! Had some really wild & crazy dreams, too!! Well, it's 10am, so far so good. Here's to hoping I can make it till atleast 3pm today!!

  • Lorena82681
    Lorena82681 Member Posts: 33
    edited May 2009

    Hi Lisa, let me mention that although I did work through my chemo, I did not work 8hrs every day due to going in late... for there were many mornings I could not get moving and I needed that extra time.  So, I would go in late and missed every Friday morning for my weekly treatments.  Kidney infections are not fun.  I agree on the crazy dreams. I had plenty of them and they were crazy.  All I could and still do, is take one day at a time.  So I totally understand your hope to making it until 3pm.  You're doing great!  Keep fighting but make sure you listen to your body and give it the rest it needs too. 

  • Lhall
    Lhall Member Posts: 51
    edited May 2009

    Hi all

    Has anyone that's been on Herceptin have itching? My body is itching so bad. I don't have a rash.I have a treatment every three weeks. And i'm thinking about talking to my onc. about getting it every week to see if it will cut down on the side effects. Like my stomach has doubled in size sense I been on the full dose. I look like I'm pregnant. My toe nails hurt to touch or have socks on. I didn't have any of this when I was doing Herceptin with Taxol. But I was on a lower dose of Herceptin than. But my onc. and chemo nurses just don't think Herceptin has any side effects so that doesn't help. I'm I nut or what for thinking it's the Herceptin? please help if you can.

    thanks Lhall

  • pmellon
    pmellon Member Posts: 38
    edited May 2009

    Hi LHall - I am on Taxol weekly and Herceptin - I have crazy itching inside my hands and feet - not surface itching.  It is horrible.  I have a rash on my hands as well.  I didn't get my Taxol treatment last week, as onc. was concerned about neuropathy.  It has improved this week not getting taxol.  I'm hoping it's not the herceptin causing some of this stuff - just keep thinking it's the taxol.  How long have you been off taxol?    I take benedryl and the itching gets better - have you tried that?  Wondering if anyone else has this awful itching.

  • Lhall
    Lhall Member Posts: 51
    edited May 2009

    Hi pmellon

    My last taxol treatment was april 21st. the benedryl makes me body ache at least it did when I would get a treatment I could always tell when the benedryl went in. I just called my Onc, and they said it isn't the Herceptin cause I have been getting it for to long to be getting an reaction from it. but I'm getting a full dose now. This is only the second dose I have gotten in the full dose. So I don't think they will let me go to weekly treatments.

    thanks Lhall

  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    So, will the TCH tx get worse or easier? Also, anyone have any se or problem's when they go in just for the H every week?

  • jeezy
    jeezy Member Posts: 32
    edited May 2009

    I had Taxol 12 years ago and one of the side effects is neuopathy which can tingle and make you feel like itching because of the nerves.  I had to so bad on night I thought I was going to have to get my husband to take me to the ER.  It will get better once you've been off the Taxol for a while because the nerves regerate.  Good luck to you all!!

    Jeezy 

  • jeezy
    jeezy Member Posts: 32
    edited May 2009

    Mamakaren...

    I want to get on the Herceptin Party Bus...I'm going for a treatment tomorrow.  I have H everyweek through July 30 along with Taxoteer/Cytoxin every three weeks through July 30. Then H every three weeks for a year.  Everyone here seems great and I've read some of the threads...my tummy is already getting huge so by the end of the year of H, I my look like I'm havng Quads...

    Jeezy 

  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Jeezy,  why is your tummy getting huge? Is this a se from the H?

  • BrandonMom
    BrandonMom Member Posts: 412
    edited May 2009

    lhall - My onc switched me back from every 3 weeks to weekly.  WIth my first 3 week dose, I also started rads, allergy season started, and I was trying to incorporate more fruits/veggies into my diet.  Within a few days, I got a horrific stomach pains, and then diahhrea, and I developed an awful cough.  I thought it was the new foods and allergies, so I switched back to my old diet and started on benadryl.  My cough did not get better and neither did the diarrhea.  So then I suspected it was rads.  Absolutely not, said my rads doctor.  Well, I was sure it was, but was just going to try to get through it.  I added pepcid into the mix and it helped my stomach feel better.  My cough also started to improve.  Then it was time for my next big dose of herceptin.  A few days later, guess what - my stomach pains and cough were back with a vengence.  OK, I didn't think that was coincidence, so I went to my onc.  He wasn't entirely convinced it was herceptin, but agreed there was too much going on to figure it out. It was his idea to go back to the weekly dose until at least a month past rads, and then try again with the big dose of herceptin.  I'd love to be able to get back to the every 3 week dose, just to stay out of the office, but on the other hand, the side effects were hard.  So last week and again today were my weekly dose.  Unfortunately, my cough is back again.  My onc gave me a cough medicine to use, but it also makes me tired.  Really good at night, though.  So bottom line, they may switch you back for awhile just to see if it is the herceptin. It would be good to at least rule it out.  Maybe suggest doing it for a month ar so to see. The bigger dose can cause more side-efffects.

  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Had my 1st TCH on Thursday 05/14...I have my 1st tx of just H today. Very nervous. Can any of you help me with any suggestions on what to do to stop these, if any? I am going to talk to my onc. nurse about the severe tummy aches, followed by diarreah and the not sleeping.  Due to a kidney infection I am fighting currently, I drank a whole container of crandberry juice Tues. evening & wed. evening and it gave me SEVERE heartburn last night....Today, still hurts to swallow dueto the heartburn, and just feel all around icky today. Trying to drink water, but my mouth is soooo "Fuzzy" that the water is almost unbearable & when I swallow it hurts from the "burning sensation" from the heartburg....And I don't get Heartburn!! And my tummy, Ugh......It's sooooo unsettled with the diarreah that I get nervous driving into work everyday! And it's only an 18 minute commute.....Any Advice Would Be Greatly Appreciated.

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited May 2009

    Lisa~ I was told to take pepcid AC in the morning and in the evening and it helped a whole lot.  I hope it stops soon.

  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited May 2009

    Lisa

    I took Zantac AC the night before the chemo and then with dinner for the next 5 nights or so. Took the heartburn completely away. (I never had heartburn before this either.)
    The integrative medicine doctor I saw recommended probiotics and the amino acid called L-glutamine which both aid with digestion and restoring the cells in the lining of the stomach and GI tract that are destroyed by the chemo. I did this after the 2nd tx and it went MUCH BETTER than the first. So those are 2 things you can try along with the acid reducer.

    You can also get the cranberry extract pills at the health food store so that you get the same effect without having to drink all the cranberry juice. That is a lot of juice to put into a delicate tummy and could be part of what is upsetting you.

    Good luck. I hope things settle down soon. When your system is upset, it makes you feel so vulnerable, I know.

    Take this long weekend to rest a lot and relax. I hope it helps!

    Amy

  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Thanks Girls....I really hate putting chemicals into my body...Well, more so than what's already flowing through my veins, thanx to Chemo!! I will ask my nurse about it.  Also, I have noticed that I have no bladder control. I have to wear pads now, and I go through like 3-4 a day!!!! Anyone else having this problem?

  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    Jeezy~ Welcome!

    Lisa~ things will get easier for you soon. Sorry you seem to be having a hard time with your treatment. I suffer from bad heartburn but ever since i started taking prilosec or prevacid i am 90% better. My stomach is very swollen and i have gained about 25lbs since all this crap happened to me. I know that the Herceptin has made me gain all this weight. One things for sure is that i'm thankful that they have these drugs that keep us living longer.

    This weekend i am in my cousins wedding and the dress is blue! I look like a fat smurf! I feel so discouraged and i'm upset that i can't put my hair up. I guess i have to wear my wig down as usual. I'm hoping that i can start my Herceptin again soon it's been a about 5 weeks since my last one. I'm just waiting for the ok from my oncologist.

    I hope that everyone has a great day tomorrow.Kiss

  • ango74
    ango74 Member Posts: 255
    edited May 2009

    Lisa- I too had the heartburn/acid reflux issuse. Omg it was awful, couldn't sleep.  I was given a rx for nexium and that worked but worked better was actually prilosec.  I know it's awful now but tx goes by pretty quick.

    Welcome to all the newbies!

    Hope everyone has a great memorial day.

  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    anglo74~ Glad you are doing great. Don't be a stranger. It's been a year since I haven't had my Aunt Flow either. LOL I wonder if it will ever comeback. It ended 3months into chemo and never came back so i'm wondering the same thing to if Herceptin is holding it back more.

    Has anyone's period came back during Herceptin???

    Have a great day all.

  • ckaydea
    ckaydea Member Posts: 3
    edited May 2009

    pmellon,

    On Severe itching...

    I finished up my TCH on 4/30/09. After my last infusion during the 30 minute wait period, I got intense itching on the palms and between my fingers, along with the same on my feet...and my female area.... They told me it was the Carboplatin's doing. They gave me Benedryl in my IV and within 20 minutes the itching started subsiding. It made me incredibly sleepy, but worked like a charm. Thank goodness this was my last treatment!

     I've started my Rads and so far no problems.

     Cindy

  • Lisa1970
    Lisa1970 Member Posts: 47
    edited May 2009

    Hi To All, Yesterday's 1st just H went well, for the most part.  The nurse that inserted the needle into my port.... hmmmm.....I wonder if a patient has ever punched her before....Does the needle insertion ever get easier? MAN THAT HURT! The 1st one hurt, too, but I was kinda out of it from the Bedaryl (sp) .....Other than that, it was uneventful, which is a good thing! The removal of the needle dosen't hurt like the getting it in there.....Man, or man, there's gotta be an easier way...Any suggestions? Yes,I have the numbing cream, big whoop....The pressure that has to be apply to get that needle in is agony!  The Dr. put me onto Prilosec (for the heartburn) 1 x twice a day and also some probiotocs (for the upset tummy) and 1 day into them, and I already feel soooo much better. My nurse yesterday said, if at any time I am uncomfortable, just call and now a days, there should be no reason to be uncomfortable because of all the drugs out there now...She did say it was most likeley the cranberry juice that made me so sick because it's soooo acidic...Dah me, never even thought of it!  My WBC are low, she said in 800 when they should be in the 1800!! But she said it will only be going up from now until my next tch 06/04...

    Hope you all have a wonderful Memorial Day Weekend and don't forget to pay your respects to the Veterans, dead & alive for without them, who know's what language we'd be speaking! Fly That American Flag with PRIDE!!

  • ango74
    ango74 Member Posts: 255
    edited May 2009

    Karen, glad you brought this up in here.  My period stopped with my first treatment and hasn't been back. The doctor said they can do a test to see if it's close to returning.  I told them if it hasn't come back by aug. or sept we can check then.  The onco said it should return in about 6 months. How is your mom?

    Pmellon, Congrats on your last tx.

    I haven't been on here so much lately because I've been in radiation, we've been having our house remodeled and my 3 yr olds been sick. But, we have a nice peaceful 3 day weekend planned.Yippee.

  • plakatakr
    plakatakr Member Posts: 188
    edited May 2009

    mamakaren- I haven't had a problem with my heart yet. I keep waiting though. I made it thru again this time. My 1st EF was 55-60, the 2nd was 60-65 and #3 was just 55-60. So, I only have to get through 1 more in August.

  • mamakaren
    mamakaren Member Posts: 225
    edited May 2009

    Ango74~ I wasn't aware about a test to see if it will return. I wonder if anyone has had it never return. Don't get me wrong, I don't miss it at all but I wonder if that's why i'm swollen most the time. A womens body has a period for a reason right?  When did you start your  chemo treatment? I started in late april of last year. My mom is doing good! She seems to appear good unless she is hiding it like i would when i would see her. I think we all do that with loved ones just so that they don't worry. I hope and pray that it never comes back. The oncologist said that stomach cancer usually always comes back, very high risk. So i really didn't like that.

    Plakatakr~ I'm praying that we never do have any heart problems. So this is your 3rd time just getting an echo or is this the 3rd time you have had to stop taking Herceptin?? This is my second time having to stop Herceptin due to low EF. As soon as i get my results back and its good then i start again. It really worries me .

    Lisa~ Have  them try that numbing spray I don't know what it's called but I never get my port in without it. Believe me it really works, It sure does hurt like heck without it!

    Have a great Saturday!

  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited May 2009

    What does EF mean? Is it the test to see how your heart is doing with the Herceptin? I had a MUGA scan - is that the same thing? Onc wants it 4x over the year to check. I just had the first one. It is some sort of nuclear medicine.

    When I saw the integrative medicine doctor he said I could take enzyme CoQ10 to help with heart function - NOT during chemo, as it is an antioxidant but after chemo when I am just on the Herceptin. Has anyone else heard about or tried this?

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