2009 Herceptin group

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Comments

  • ejlj
    ejlj Member Posts: 211
    edited March 2009

    karen, so sorry to here about your mom.  I'll keep you both in my prayers tomorrow.

    welcome jennifer!  tina

  • Estepp
    Estepp Member Posts: 6,416
    edited March 2009

    Karen, I hope you mom will beat this!

    Ladies.. how is everyone doing on the herceptin?

  • traceyz
    traceyz Member Posts: 745
    edited March 2009

    Hi Karen,

    Just wanted to drop by and let cha know that I am still praying for your mother!! I pray that all will be well very soon. Just know that God will hold your hand always!!

    Tracey

  • DianaT
    DianaT Member Posts: 532
    edited March 2009

    My onc said that I am considered cancer free at this moment since they zapped my brain met but wants herceptin, tykerb, avastin and xeloda to be given as an insurance policy.  I will have the herceptin and avastin thru IV infusion every 3 weeks, xeloda I will be on for 2 weeks, off for 1 week, then we do this cycle for 6 rounds.  I will be on tykerb and the herceptin indefinitely. 

    The onc said that I won't loose my hair, I might develop hand/foot syndrome and have diarriah (sp). I told him that I feel great and I am not going to give that up, I finally feel wonderful all the time, I am doing lots of wonderful things with the kids.  He said we will adjust if we need to.  I said ~ well I guess I will be seeing you forever!  His answer was "When we hit the 5 yr mark, we will just be friends" as upset as I am about this development, that statement made me feel wonderful.  After that I went to see my chemo nurse, I needed a hug and my husband was sitting there like a deer in headlights during the whole discussion.  I started to cry and told her that I didn't want to do chemo again, she said that she will be right with me and it won't be like it was last time.  

  • ango74
    ango74 Member Posts: 255
    edited March 2009

    Diana glad to hear that everything is going well. It sounds like things are going great.  With my Herceptin and Avastin tx I have no side effects, hopefully you wont either. Did your onco tell you if Avastin crosses the blood brain barrier?  I haven't found a clear answer to this. I know Tykerb does. You're still in my prayers.

    Angie

  • mamakaren
    mamakaren Member Posts: 225
    edited March 2009

    hello

    My moms appt was yesterday and they need to do a PET scan to see if her lymph nodes have cancer because they are swollen. It came down to them wanting to do a gastractomy. They are gonna have a conference about my mom, They say she has a rare type of cancer. As i was driving her to appt i was having anxiety just thinking about what if i can't handle it and run out of the onc office just like i did with my first appt. I felt like throwing up and had the runs. We got through it alive thank my God. I don't know if i'm just not paying attention to myself or what but i feel physically better than ever. My hand hasn't hurt me at all it falls asleep at night time but not pain. Mentally i'm screwed!!

    wishing everyone good health and many blessings!

  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited March 2009

    Karen

     Just wanted to say my thoughts and prayers are you with you and your mom.   I can't imgine!!  I have prayed to God that during my treatments he would not let anything happen to my kids because I knew I wouldn't be able to take care of both of us.   My mom had her shoulder replaced a week before my diagnosis and we were quite the pair for a few months.  I needed her and she needed me.  It will be the same with you and your mom.  You are a strong woman... you will be there for her because you have to be.  That is sometimes just what gets you through it.   Sending you all the best wishes and strength.

    Jennifer

  • GramE
    GramE Member Posts: 5,056
    edited March 2009

    Hugs and Blessings and prayers going up for each of you.   Don't forget to turn your clocks forward Saturday night.   Nancy

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited March 2009

    Diana - Your onc sounds like a sweetheart! What a wonderful thought - just friends! Wishing you all the best.

    Karen - Prayers still going up for you and your mom. Stay strong for her - she needs you. I didn't run out of the office when I went to my first meeting with the oncologist, but I did sob and drip tears through most of it. Just the thought that I needed to be there with all those. . . sick people!. . . was overwhelming to me.

    Nancy - Here in the wild, wild west, we don't turn our clocks ahead. Phoenix stays on Mountain Standard time, which actually is the same as Pacific time in the summer. So we just have to adapt to everybody else's changes and remember that the cable channels are an hour later (or earlier - I can never remember!)  Sue

  • ipohgirl
    ipohgirl Member Posts: 85
    edited March 2009

    Dear Jenni,

    Hi there! The zometa sucks!!! I was on the first cycle of TCH on Thursday, the zometa (prophylactic) was given together coz my bone density was borderline. I think they did not check my creatinine levels property and probably overdosed me! Couldn't sleep because of teh steroids first three days, then last night was HELL as every joint and muscle hurt.

    And no, they did not give me alleve nor claritin..................

    Do sitz baths help? I am going crazy with this pain. Also, can't eat anything, just on a nutrition drink. sorry for this whining.

    When was your zometa shot given? I will not have it again.......................

  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited March 2009

    Hi Ipohgirl

     Oh gosh yes.. those steriods are just hell!!   I was an emotional wreck from those things!!   The best thing I did was get some Adavan from my doc which not only helped the nausea but I could sleep and it sort of evened me out emotionally.

    Motrin was the only thing that really helped with the joint/bone aches.   But you know Taxotere is hell on your bones too so it might not be all the Zometa.   Try to up your calcium.  Take calcium citrate with Vit. D and Magnesium.   I take 1800 mg a day and break it up into three times a day.  

    The Carboplatin made it hard to eat because everything tasted like metal.    I really drank alot of water and energy drinks.  Seemed like the more I could drink the faster I could get that stuff out of my system.   

    Amazingly though with the TCH plus zometa I was really much better about 1 week after treatment.  But those first 4-5 days really sucked.

     Hope you are feeling better soon.

    Jennifer

  • traceyz
    traceyz Member Posts: 745
    edited March 2009

    Karen,

    Continued prayers still shining down on your mom and a prayer of strength for you!!

    Tracey

  • ipohgirl
    ipohgirl Member Posts: 85
    edited March 2009

    Dear Jenin,

    Thanks for your encouragement and sharing. Over here in Hong Kong, they refuse to sell me even the alleve without a prescription, so I'll have to wait till next Wed and ask the onco.

    Tried a hot bath yesterday adn it did help. Slept for the first time last night and it was bliss. I didn't wanna wake up from the nice dream. Still have no appetite though, like you am just dumping in liquid amap. Is it really worth all the good soldiers that we are sacrificing to fight the bad guys? Why don't someone find a vaccine or something? Or is it the corporate interests at stake in this multi-billion dollar biz?  

    This blog is my lfeline, there is so little info and support from Asia.

    About the zometa, I read about teh horrible SE (esp jaw necrosis) and how it stays for over 10 years in your system. In that case, one shot per ten years would suffice, right? Why are my BC sisters pumped every month/three months for it? I will take oral supplements, and if I survive this BC, I will live with the osteoporasis............

    BTW, how does one put one's diagnosis at the bottom of the post? Could someone instruct me please.

    On the bright side, my nasturtiums are blooming very well along wiht the bougainvillaes in my balcony overlooking the South China Sea. If any of you girls are over in HK for a break, please let me host you/bring you around. Also, a nice friend will take me to see the TCM for acupuncture/massage.

    Cheerio, my dear friend. 

  • Smile2006
    Smile2006 Member Posts: 155
    edited March 2009

    Hi all!  I am new to to this thread...my regimine consists of tch every three weeks with herceptin for a year.  I just went through my second tx and this one has been really bad for me.  The taste in my mouth is awful.  I can not eat anything!  Which causes my blood sugar to drop in which causes the naseau to get worse.  Any suggestions on that taste??  I did find sucking on sugar free candies helped a bit...its even hard to drink water.  My hands look dried up prunes.  Flaking and tender on the tips.  I was putting Aquaphor on at night with gloves...my fingers seem to get worse.  Now I am using Utter cream with the gloves....any suggestions???? 

    Mamakaren:  so sorry to hear about your mother....i will keep her in my prayers!

    Ipogirl...i believe you go to your profile and fill out a questionaire...it fills it in for you. 

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

    Shari are you on the TC part for the whole year ??  I am also on TCH but TC for 6 treatments and then the H for the rest of the year.  I am about to start my 3rd treatment on Monday and #2 was horrible for me.  One suggestion that I heard is to use plastic forks to help with the treatment. 

  • Smile2006
    Smile2006 Member Posts: 155
    edited March 2009

    Jaimieh...I am on the same regimine as you TCH for 6 doses and H for a year..just went through #2 last Thursday and it has been awful! I do use paper plates, plastic forks, spoons...we eat out alot and I have them bring me my dish in to-go plates and plastic silverware....I do get the looks..but I dont care! It does make a difference in the taste.

  • GramE
    GramE Member Posts: 5,056
    edited March 2009

    I had the awful taste when my port was flushed and if they flush very SLOWLY, there is no taste problem.   If you cannot drink water, try sucking on ice chips or popsicles or frozen fruit bars.  The cold numbs the mouth and helps with bad tastes.   Also, drinking LOTS of water helps flush Herceptin thru your system.   I had chills a couple of tx ago and they have slowed the drip from 30 minutes to 50 minutes.  

      If you cut up your food and use toothpicks, it give a new meaning to "picking" at your food...!!!    

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

    Shari I hear you on the taste of food.  I am spending the month of June I think eating out once food taste normal again :)  Even when I am in my week before my next treatment it is as though I still have a taste in my mouth that will not go away.  I just hope it isn't the herceptin. 

    Nancy~ I smell the flush more than taste it....eeeweee....

  • Smile2006
    Smile2006 Member Posts: 155
    edited March 2009

    Jaimieh.....I finally found a drink I can tolerate.  Its the crystal lite Lemon Aid packets you add to your water bottle.  I remembered reading on another thread that Lemons will spark your taste buds....whatever it is...I can drink it.  I hear you on the eating out in June.....Cant wait!  I dont think its the Herceptin because on the other thread the ladies who are done with chemo and only on herceptin havent complained about that....but I will definately ask Smile

    I dont have a port.....but when they start my iv I get that taste in my mouth...I have to ask that they start it slow!  I am soooo sensitive to smells....i could not imagine that...have you tried bringing something you do like to smell and hold it close when they do that???  Maybe that will help...I love the smell of my DH cologne, that has not changed for me Laughing

    Finally made it into work today...hopefully I can get something done after being out all week.

  • SusieMTN
    SusieMTN Member Posts: 795
    edited March 2009
    Hello all!  Been on Herceptin since July '08.  Boy, it is completely different when it is just the Herceptin and not the Chemo drugs.  Glad to be done with chemo, thru surgery and at the (pre) radiation phase.  Sending my well wishes to all! Smile
  • Smile2006
    Smile2006 Member Posts: 155
    edited March 2009

    Hi SusieMTN....I have a question for you....do you still get the metallic taste? 

  • GramE
    GramE Member Posts: 5,056
    edited March 2009

    My taste buds are back to normal, but cranberry juice is OFF my list.   Tomorrow is H tx and then maybe a stop at the mall if the weather is decent.   It was 74 today and 44 is forecast for tomorrow.

    I always have an extra separate bag of saline with my tx - from the first DD chemo last June.    The onco says it helps dilute it and hydrate, even if you drink tons of water.  Maybe I said it before, but a couple of tx ago I got chills with the 30 minute drip, so now I get it over 50 minutes and no chills.

       

  • SusieMTN
    SusieMTN Member Posts: 795
    edited March 2009

    Hello Smile2006!  No, no problem with metallic taste currently.  Wait, do you mean from just Herceptin or Chemo drugs?   

     I initially got a sort of metallic taste when I first started Chemo and was on a combo of Herceptin and Taxol.  Periodically I would think what I was eating tasted different (not as good as usual) and would be disappointed because I really wanted a particular food.  My family got use to "....this taste weird"  followed by "its the chemo" from husband or son!

  • Smile2006
    Smile2006 Member Posts: 155
    edited March 2009

    SusieMTN..LOL...I get the same responses from my family.  I get the bad taste after chemo..and it lingers until next go around... I was just wondering if you still have that being on just Herceptin.

  • Estepp
    Estepp Member Posts: 6,416
    edited March 2009

    Ladies.. how is everyone??? I am hangin' with the Herceptin and do RADS.. which I HATE. Herceptin is causing a little joint pain.. and I hope it is responsible for the weight gain.. I have never gained weight in my life... 5pds here and there... but now I weigh 10pds more than I ever have... :(...

    I hope you all are doing ok... check in and let us all know!

    Love,

    Laura

  • GramE
    GramE Member Posts: 5,056
    edited March 2009

    I have no  nasty taste with herceptin, tx was today and I am pondering what to eat for dinner.   If only someone would just plunk something in front of me -- even a bologna sandwich.    

  • Smile2006
    Smile2006 Member Posts: 155
    edited March 2009

    That is good news...I can handle being tired...but to go a whole year with this awful taste in my mouth...THANK YOU...

  • ango74
    ango74 Member Posts: 255
    edited March 2009

    Hey Ladies! Hope all is well with everyone. I had my Avastin and Herceptin tx yesteday.  The Avastin had made my blood pressure rise so they put me on a blood pressure pill to lower it.  My head has been hurting of course I was thinking it was brain mets but it is probably because of the blood pressure.

    As far as the nasty taste issuse, I found I just had to make myself eat. Nothing tasted good but I would force down toast, applesauce, anything.  But, I didn't have the nasty taste with every chemo, it was only 2 or 3 of them.

    Take care.

  • SusieMTN
    SusieMTN Member Posts: 795
    edited March 2009

    hbcheryl:  LOL!!!!  That is soooo funny!  I equate it to "is it hot in here"!!!!  "No MOM it is you" and "No Susie I am not hot"  LOL.  No weird tastes so far, but who knows!!! I was a little tired after today but they gave me benedryl IV, and boy it wiped me out! Came home and slept for 1 1/2 Hours!

     Estepp: Herceptin has also increased my joint pain.  So far I haven't gained any weight from the Herceptin which I hope continues as during Chemo I gained a lot.  I was on Chemo for 6 months so after a while I was just like "so I wonder how much I will gain today".  I have lost about 8 - 10 lbs since I stopped Chemo, hoping for more before I get tired.  

    leftyAKAnancy : LOL Know how you feel!  Loved the WHOLE bologna sandwich idea!  

    Hope all you ladies are having a great night, I apparently am feeling a bit goofy, I will attribute it to the benedryl!

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited March 2009

    Is herceptin doing a number on anyone elses stomach.  The first few doses I would have an upset stomach for a few days, but this time its lasted almost the whole three weeks!!  I will as my onc next week, but i dont think THEY know the side effects H can cause!!

    Thanks,
    Laura

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