2009 Herceptin group

Options
1…1516182021

Comments

  • mmm5
    mmm5 Member Posts: 1,470
    edited June 2009

    Hi Joan

    Your post made me smile I was dxed almost one year prior to you and just finished Herceptin last month. Boy what a year, I just wanted to let you know you will make it through it is not fun but doable and Herceptin is awesome! Benadryl or Claritin really helps with rash and bone pain, I always took it during chemo. Be well and please ask questions if you have anything come up, I also did 6 TCH, this is a good chemo checked it out with 3 ONC's. The newest trend now is that they think they may be overtreating Stage 1 with a lot of chemo and going to just TAXOL with Herceptin.

    Good luck

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited June 2009

    Hello Joan... Yes SE is side effects, tx is treament, dx is disgnosis.  I'm glad your treatment is going smoothly so far.  I get pink with H, but It's not a sunburn, as I'm not in the sun.  It usually goes away after about a week.  Are burning easily when you are in the sun?  I have not experienced that yet.  Much Love, Jessica

    · Share on FacebookShare on Twitter
  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited June 2009

    Karen~ Happy belated birthday.  I hope you enjoyed your weekend :)

    · Share on FacebookShare on Twitter
  • Estepp
    Estepp Member Posts: 6,416
    edited June 2009

    Ladies,

    I hope you are healing well, learning much here, and living your life to the fullest ( we know SANDY is...:).... go SANDY!)

    I have been busy with my hubby's band ( local summer carnivals here  ..fun fun..) and work and then I got Food Poisoning. I went to doctor today, and he said I could still be sick today from food poisoning.. ( been throwing up for three days.. and THIS IS NOT LIKE ME.. I am not a puker.. actually.. I NEVER NEVER NEVER get sick)... anyway... I am still pretty week, but wanted to say him to my girls. I miss you and your stories.

    I am getting close to the day I was told.. " You have BC"... so it is really emotional around here.. ( again..... NOT ME)... but hubby and I are doing the tears together.. so I has me a boo hoo buddy...hehe.

    Really though, only you all know how I feel ... my sisters...

    I love you gals!

    Laura

    · Share on FacebookShare on Twitter
  • mamakaren
    mamakaren Member Posts: 225
    edited June 2009

    Hello I got back from my B-day mini vacation and it was really wonderful. I went horseback riding on the beach it was heaven. I even stayed and extra day but unfortunatley while being in the swimming pool I slipped and hit my tailbone on the stairs so it hurts! OUCHCry Hope that everyone is doing great.

    Estepp I hope you feel better.

    · Share on FacebookShare on Twitter
  • joan11847
    joan11847 Member Posts: 13
    edited June 2009

    Hi ladies

    The last time I posted, I was only at the beginning of the SE.  WOW what an eye opener!  I am 62 years old, work as a teacher of special needs kids and have had very little experience with illness.I am usually a very active person and during the summer I like to do projects, have people over for swim parties (margarita's especially), and spend time with my 6 children and their families.  I don't think I will be traveling much this year.  I am humbled by all of you who have gone through the BC, TX, SE and remain strong in spirit.  These posts give me strength to go on.  Yes, I had all the SE - vomiting, diarrhea, nausea, skin rash and hives..  I am still struggling with some of them and it has been 7 days since the treatment.  Does it usually last that long?  Does it get better or worse with each treatment?  Or is it different for everyone? The doctor told me he is going to add Emend to my treatment next time.  So, I'll be looking to all of you for your strength and support through the next 5 chemo treatments.  I am hoping that once the herceptin is alone the treatment won't be so bad.  Thanks to all of you who have given me information and support.

    Joan 11847 

    · Share on FacebookShare on Twitter
  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited June 2009

    Joan~ What chemo. are you taking ??  It can help the people who have been thru it help you with the time frames.  I hope you are feeling better soon.

    · Share on FacebookShare on Twitter
  • MRSROCKYTOP55
    MRSROCKYTOP55 Member Posts: 403
    edited June 2009

    Joan, Emend should do the trick.  I did not have any nausea with Emend on A/C treatments and don't need it now during Taxol.  Sorry you are here, but this site is a wonderful encouragement.  Blessings, Kathy

    · Share on FacebookShare on Twitter
  • joan11847
    joan11847 Member Posts: 13
    edited June 2009

    MrsRockyTop55-Thanks for the info on Emend.  I hope it works for me that way.

    Jaimieh-I am on Taxotere, Cyclophosphamide and Herceptin (TCH) every three weeks for 6 sessions then  the remainder of the year on herceptin.  Also a shot of Neulasta three days after each treatment.  

    Joan 11847 

    · Share on FacebookShare on Twitter
  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited June 2009

    Joan~ I was on TCH Taxotere, carboplastin, and herceptin and I struggled for almost 2 weeks after each treatment.  I never had a neulasta shot but I have heard that it causes bone pain alot of woman use clartin to help with that.  I asked what you are on because I know AC has a whole different set of SE's. 

    I hope you are feeling better. 

    · Share on FacebookShare on Twitter
  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited June 2009

    Joan - I am on TCH and had my 4th tx (out of 6 total) yesterday.  My pattern is that the first 4 days are ok, but then days 5-10 I get some stomach pain and GI spasms/cramping. I have been seeing an integrative medical doctor who is helping me with supplements to deal with these SE's. It has been VERY successful so far (aloe juice, L-glutamine, probiotics, digestive enzymes etc) and I am very encouraged. It is wonderful to have an advocate that is medically trained (D.O) but does not automatically write scrips for more and more medicines. I do take Zantac every night for heartburn the first week and it takes it away completely. Anyway, it might be worth looking into finding an alternative practice to get some suggestions to help with the GI stuff. I run everything by my onco doc first and he is fine with all that I have mentioned.

    I am surprised and disappointed to find SO LITTLE crossover between the traditional and alternative types of medicine. It seems like if you want to explore it, you are totally on your own. Do other people find this to be true in their parts of the country as well?

    But to finish my thought, Joan - after about day 10, I am all better until the next tx comes around. 

    OH - and re the diarrhea, he suggested magnesium which helps relax smooth muscle tissue which the lower GI system is made of. I haven't tried it yet but will in a few days.

    I wish you the best recovery. You can do this!

    Amy

    · Share on FacebookShare on Twitter
  • flower14
    flower14 Member Posts: 5
    edited June 2009

    Hi Joan

    Do they give you steroids prior to your treatment or do you take them at all after?  I also get red in the face and chest like a sunburn, and was told by my Dr. sister-in-law that it was from the steroids.  I get IV steroids prior to Herceptin because I had a bad reaction a few weeks ago.  So far everything has gone well since and I am going to try to stop the pre-meds and hope all continues to go well.  I just don't like the SE's from the steroids.  I hope everything keeps going well for you. 

    · Share on FacebookShare on Twitter
  • Estepp
    Estepp Member Posts: 6,416
    edited June 2009

    Flower... what reaction did you have that you needed the steriods before?

    · Share on FacebookShare on Twitter
  • joan11847
    joan11847 Member Posts: 13
    edited June 2009

    Hi mmm5

    You mentined the newest trend is where the thinking is that overtreating might be happening and taxol and herceptin might be the answer.  Where did you read that or were told?  I am trying to get my oncologist to reduce my treatments to 4 instead of 6 TCH and of course keep the herceptin for the year.  I am wondering if you or anyone else has had only 4 tx of TC and a year of herceptin?

    Joan 11847 

    · Share on FacebookShare on Twitter
  • NanaA
    NanaA Member Posts: 293
    edited June 2009

    Joan 11847 My dx seems to be very similar to yours.  I would only have done rads had I not been Her2+. I did not have the TCH  I just had the taxol x 12 .  This is weekly which would be the equivalent of 4 doses every 3 weeks. Herceptin was given with every 3rd tx.  This is considered to be easier to tolerate.  The onc said we could do the cytoxan later if I wanted, but I said no after having a second opinion.  The second opinion onc thought the weekly taxol was enough and that the real value was coming from the herceptin.  Apparently herceptin gets a better boost if it is started along with chemo.  I will be having rads starting in july.  Since I am also er+ and pr+ I will also be doing femara or one of the other AI's.  I see onc again on 29th.  I just had to do my 2nd echocardiogram to make sure heart is ok with the herceptin.  I have MRI and CT scan in the next week for them to do the mapping for rads,  Hope this helps.  Best wishes.  Annette

    · Share on FacebookShare on Twitter
  • mamakaren
    mamakaren Member Posts: 225
    edited June 2009

    Hello hope that everyone is okay with everyone. what's up with the party bus? I think it's about time everyone getts back on the bus is to quiet. It seems like everyone is all PARTY OUT. Wishing everyone a great Saturday and many positive vibes.

    Love KarenWink

    · Share on FacebookShare on Twitter
  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited July 2009

    I am thrilled to be able to post that I had herceptin on Monday and did fine without benedryl :)  I also did not feel sick this time.  I was so happy leaving the infusion room and not feeling doopy. 

    · Share on FacebookShare on Twitter
  • mamakaren
    mamakaren Member Posts: 225
    edited July 2009

    HI Jaimieh, I have never had benedryl with my herceptin only zantac for severe heartburn. I usually feel good everytime i get it now although I am on #24 and need a total of 54 treatments. I feel that it gets easier the more you take it. Don't get me wrong I still feel achey and sometimes a little sick but not after the treatment it's usually the day after. Hope you are doing good  and hope you continue to have good treatments.

    Have a great day!

    karen

    · Share on FacebookShare on Twitter
  • Denali
    Denali Member Posts: 347
    edited July 2009

    I'm new to this board, as I usually hang out at the TCH board.  My last TCH chemo was June 8th and today I was scheduled for my first Herceptin only.  However, because my MUGA test had dropped so much the dr. wouldn't let me have Herceptin.  Before chemo my Muga was 75.  Last week after chemo it was only 57.  The receptionist mistakenly sent me to the hospital for my 2nd Muga, not the Cardiologist's office where I got the first one. 

    The dr was not happy that I was sent to the hospital--technicians there aren't as good and the results are read by radiologists not cardiologists.  The technician (who left a huge lumpy bruise on my arm from taking the blood) said that sometimes different machines will give different results.

    Have any of you had your Herceptin delayed due to Muga results??  If so, what was your score and how long did you have to wait?  The nurse mentioned sometimes folks have to wait 3 MONTHS.

    I'm so sad.  I have to go see the cardiologist for consultation.

    · Share on FacebookShare on Twitter
  • Alaina
    Alaina Member Posts: 461
    edited July 2009

    The Last One Before the Last One!!!

    Today I successfully completed Chemo #5. We call this "the last one before the last one." (swiped from my sister-survivor Amy).


    What a feeling!


    I haven't updated as much as I would like to because I really hit the "brick wall" people talk about after your 4th treatment.


    My fatigue was OUTRAGEOUS! Not sleepy, just TIRED! I thought about all those times pre-cancer I would tell people I was "tired!" Not even CLOSE! It's a fatigue that is barely explainable, but I would have given up vital body parts for a day's worth of normal energy and a night's worth of uninterrupted sleep!


    I'm swelling. I'm becoming that brown-bald-pufferfish I joked about at the beginning of this process! LOL!!! My ankles are "cankles" and I had the added joy of getting a slew of mosquito bites all over them after eating crabs outdoors at Stephie's. So my cankles are puffy and they itch! Lovely...
    Lastly, I'm grappling with the phenomenon called "Chemo Brain." I am getting forgetful and it's hard to focus and concentrate. I have left the house without my wallet and lost the badge that gets me into my federal building. Just today, I left my Scrabble game in the back seat of the car of the lady who drove Me & Mom to the hospital, and then when coming home in Glenda's car, realized I had left my cell phone in the lobby of the hospital as we waited for them to bring her car around. We had to go back and get it, thankfully someone had turned it in!


    My numbers were "ok" this time around. My HGB dropped to 30. Not at 24, and probably won't get there before my last chemo, so it's looking like I will skip the blood transfusion! YAY!!! And thanks for all the prayers!


    However, I am still anemic, my body has decided it doesn't want to make many red-blood-cells anymore. It was so bad today that they nurses sent my blood down for more a more specific workup to determine if I needed an infusion of Venifer, and liquid form of iron, which would have constipated me horribly. Thankfully, the additional numbers came back within range, so even though my red blood cells are LOW, I am not in a zone where extra steps need to be taken! They will do this same more complex workup at my last chemo and decide then if I need the Venifer.
    So my prayer requests over the next few weeks:


    1. Mild, manageable side-effects from chemo and post-chemo drugs, as they have been
    2. Reduced swelling
    3. Increased energy and reduced (or at least manageable) fatigue
    4. More GOOD sleep nights than BAD
    5. The discipline to drink 2 liters of water daily


    I'll end this with the words from the closing of Farrah's documentary.


    Last but not least...the hardest question of all for me to answer
    How are you?
    Today, I've got cancer
    But on the other hand, I'm alive!
    So I guess I'm GREAT!
    Yeah, right now, I'm GREAT!
    My life goes on and so does my fight
    And, oh, by the way
    How are YOU?
    What are YOU fighting for?


    *****
    Doing Great & Fighting for My Life!,


    Alaina

    · Share on FacebookShare on Twitter
  • mamakaren
    mamakaren Member Posts: 225
    edited July 2009

    Alaina How sad i feel that she lost her battle. I'm glad that you are almost finished what an amazing feeling ha. Hope you feel better and believe me you will.

    Denali I had to stop herceptin 2 times already due to low EF but i'm doing good now. I had to take 1 1/2 month off. I remember the swelling and all of the above and i'm gaining weight like crazy but all that matters is that we are alive. hope your EF improves soon.

    Wishing everyone a great 4th of July!!!

    · Share on FacebookShare on Twitter
  • Denali
    Denali Member Posts: 347
    edited July 2009

    Karen, thank you so much for responding.  It's good for me to know that others have had to stop due to low EFs.  I think it especially worries me because while there's very little cancer in my family, there's lots of heart problems.  So all this is tapping into that fear of mine too.

    Don't you wish for the old days sometimes...when your biggest worry was being a little short of cash one month, or the dog eating your favorite pillow??

    · Share on FacebookShare on Twitter
  • mmm5
    mmm5 Member Posts: 1,470
    edited July 2009

    Hi Joan

    Re: your question of overtreatment, I actually had 6x TCH I believe I was to have 4 but my oncotype score came back high and they decided to do 6. After treatment I went to visit with a 2nd and 3rd opinion. The 2nd and 3rd Docs concurred that for stage 1 Her 2 we may be getting too much chemo when the year of Herceptin is what seems to be the most important. They both felt especially strong about TCH over ACTH due to more and more heart issues. The trend I am seeing in my reading right now is TAXOL and Herceptin. Chemo is hard on the body, it really messed with my bone marrow and I had suppressed WBC's for a year. On the other hand I want to say I did the most I could not to have to do deal with recurrance.

    · Share on FacebookShare on Twitter
  • oldstudent
    oldstudent Member Posts: 61
    edited July 2009

    Hi, all. Every person is different. One onc suggested TCH. The second recommended ACTH due to ER/PR negative, which means they have less ammunition to prevent recurrence. It was my choice, and I've opted for the more aggressive treatment because my mother recurred after many years and I don't want to go through this when I'm 70! I think it is a bit of a crap shoot--more art than science at times. All you can do is weigh the risks and benefits of the treatments, have them closely monitor your heart during treatment, pray a lot, and rejoice in the availability of effective treatments.

    · Share on FacebookShare on Twitter
  • mamakaren
    mamakaren Member Posts: 225
    edited July 2009

    Hope everyone is doing good. I have been feeling soooooo bad lately I happen to get my period after a year. I have been bleeding aloooot and I feel very weak today the bleeding has declined a little bit but still haven't went to work all this week. 

    Today I went to get my echo and was very nervous due to all the fast heartbeating but they said that nothing seems out of the ordinary so I'm very thankful. I guess it might just be from all the hormones going crazy again and causing me to have great anxiety. I hope everyone has a relaxing evening.

    Love Karen

    · Share on FacebookShare on Twitter
  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    Wow Karen.. I still don't have my period.. you are probably younger than me. I wonder if I will get mine back. I hope not... just let it be over.

    Hang in there girl!

    · Share on FacebookShare on Twitter
  • mmm5
    mmm5 Member Posts: 1,470
    edited July 2009

    Hi Karen and Estepp

    I was 42 at dx and have not had a period since starting chemo in June 08 so just over a year, I think I am officially postmenopausal chemo induced 10 years too early. LOL

    · Share on FacebookShare on Twitter
  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    Me too.. I wonder ... could we go two years with no period.. and then start?

    · Share on FacebookShare on Twitter
  • mmm5
    mmm5 Member Posts: 1,470
    edited July 2009

    There are stats on that, if you make it to a year I think it is somewhere around 90% permanent menopause and then go's down after that.(more stupid stats)  :):)

     I will be at U of A next week at Oncology unit and will ask about that. Are you ER positive as well?

    · Share on FacebookShare on Twitter
  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    No, I am just Her2.. not hormone +

    · Share on FacebookShare on Twitter

Categories