Her2 Roll call

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mmm5
mmm5 Member Posts: 1,470
edited June 2014 in HER2+ (Positive) Breast Cancer

Does anyone know what happened to our Her2 roll call, I look at it so often and it just dissapeared....weird!

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  • doingwell
    doingwell Member Posts: 1
    edited July 2009

    I just discovered and joined this discussion group today.  My first reply will be this one to add to the HER2 roll call.  I have done "miraculoulsy well" (to quote my onc) with herceptin.  My treatment was:  8 wks AC and taxol, mast. 35 rads, herceptin one year and now Arimidex for 5-7 years.  I have joint pain all over on and off and I personally believe it is due to Arimidex and stress (I have been dx with Post Traumatic Stress Disorder due to my bc, no surprise there).  My dx info is:DX 10/16/06, IDC, 10 cm (no, that is not a misprint, my tumor was ten cm), Stage III, Grade 2, 2/12 nodes, ER+/PR+,HER2+. The chemo completely eliminated my ten cm tumor; there were NO cancer cells found in my breast tissue from my mastectomy.  So,   I try not to think about my joint pain too much since it seems to be such a small price to pay for remission.  You are all my heroes. From Diana who is Doing Well.

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  • ncchick
    ncchick Member Posts: 7
    edited July 2009

    Hello.  I am new to the blog and need some help.

    I have been on Herceptin since the end of September last year.

    About 3 months ago, I asked to get my H every 3 weeks instead of every week.  My onc had not heard of that; he researched it and now I am gettingh it every 3 weeks. 

    QUESTION:  How long is the infusion of H when given every 3 weeks?  Recently,  I began to have awful side effects.  Aches, bone pain, sleeplessness, low energy, diarrhea, magnesium loss, drippy  nose that burns my nasal lining and much more.  To function for  the first 7 days after treatment, I take benadryl, tylenol and a half of Xanax before bedtime and something for pain during the day.  I feel toxic.   I think the Herceptin drip is too fast!!!   I am getting the every 3 week dose in a 30 minute period. 

    I have spoken to my onc about how bad I feel but he thinks I just had a flu like virus.  I need a dosing study reference to show him.  Should I call the Herceptin company?

    Thanks for any help you can give!!!

    NC Chick

    BTW - I was dx with Inflammatory BC left breast 14 months ago.  Since then I have had dose dense neo-adjuvant A +C, then surgery, then Taxotere and H after surgery, and 33 treatments of radiation after I finished the Taxotere.  Now I have 6 more treatments of H - one every 3 weeks.

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  • helena67
    helena67 Member Posts: 357
    edited July 2009

    HI,

    In my experience the Herceptin is typically given over 30 minutes. The dose is 6 mg/kg if I am not mistaken (if it is given every 3 weeks).

    I am sorry to hear you have so many bothersome side effects. I had some slight nausea after the first few infusions but then it wore off and now the treatments are going fine. So for you also, it may get better with time. Don't forget that you underwent a lot of chemo and the side effects of all that (the A/C and Taxotere and not to mention the rads) also adds upp over time, making you feel tired and worn out.

     I think it is very important that you try and complete the Herceptin treatments so try and take good care of yourself during this time. Take enough rest, etc.

     Good luck!

    Helena.

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  • ncchick
    ncchick Member Posts: 7
    edited July 2009

    Thanks, Helena.  I appreciate the encouragement. 

    I have read that some people are getting the every 3-week dose administered over 60 minutes and 90 minutes.  I guess that means a slower drip and cannot help but wonder if that would help.

    NC chick

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  • kamcrae
    kamcrae Member Posts: 1
    edited July 2009

    Hi NC Chick, I just finished my chemo and will start the every 3 week Herceptin treatments.  I was told it will take 60 minutes to do.  I sat next to a woman at chemo who switched her Herceptin back to weekly because she felt so bad on the every 3 week cycle. Good to know because I was getting a slight headache after the weekly dose so I am sure the 3 week dose could be worse!

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

    NCChick I would just tell them that you want the drip slowed down and if they ask why tell them that you want it at 90 min. to reduce the side effects (your Dr. should follow your desire). 

    I am on the 3 week drip and I felt nauseous with #1 but not with my 2nd.  I hope my new trend continues. 

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  • cbm
    cbm Member Posts: 475
    edited July 2009

    Hi, ncchick, I get Herceptin every 3 weeks and it takes 60 minutes.  I have no side effects that I'm aware of, sometimes I feel a little woozy but I'm convinced it's just from being at the onc clinic and remembering all the things that did have se.   One week I was in a hurry and asked them to speed it up and they said no, no way.  I get a bag of fluids first which I can't decline and I'm not counting that in the 60 minutes.  I declined the premeds (benadryl and dexamethasone, which they offer).

    I'm done in October, I think, so I'm pretty far along.  Hope this helps!

    cbm 

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  • ncchick
    ncchick Member Posts: 7
    edited July 2009

    On July 8th I received my triple dose of Herceptin,.  Only this time they gave it to me over 60 minutes.  The difference was astonishing. 

    I absolutely had NO side effects at all for 13 days.  Then the drippy nose started along with the body pains and the inability to wind down at bedtime.  But it was truly remarkable to have the relief that long!  Oh, and another benefit...with the triple dose over 30 minutes my magnesium level was horrible low in the 1s. Now it is 1.6.  1.8 is the bottom of the normal range.

    So I am excited about this progress!

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  • leslie43
    leslie43 Member Posts: 29
    edited August 2009

    i am about to begin - onc has told me to expect a 2.5 - 3 hour drip. he is a big research guy in the her2 field

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  • Mocity
    Mocity Member Posts: 451
    edited August 2009

    I finished chemo in Jan09 and now get Herceptin every 3 weeks.  The drip takes about 90 min.

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  • MRSROCKYTOP55
    MRSROCKYTOP55 Member Posts: 403
    edited August 2009

    I get Herceptin every three weeks with a 90 minute drip.  Maybe they need to slow it down.  Will be praying for you, Kathy

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  • threeteens
    threeteens Member Posts: 22
    edited August 2009

    I get Herceptin once a week and have quite a few side effects.  My original MUGA score was 72 and  has dropped to 65.  At first they retested my heart with an echo and it showed that my EF had dropped to 50 and my treatments were stopped until I had another MUGA at which time it came back at 65.  It takes 1 1/2 hours to 2 hrs for my treatment every week but after the thought of not being able to continue on Herceptin I decided that I should just suck it up and feel lucky that there is something that works.

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  • Mitch56036
    Mitch56036 Member Posts: 16
    edited August 2009

    Hi, I also do the same re. the Her2 Roll call but I think someone asks a question and then it seems to move onto answering that question and then the roll call disappears. All good information though.

    Dx Feb 2005 Stage IIB ER/PR+ HER2+  Chemo/Radiation Herceptin (12 months) every 3 weeks (probably 45 minutes) Luckily no side effects other than a bit snuffly. Had to drive 5 hours home the next morning and had no problems other than tired. Still on Arimidex (initially very aching joints and muscles - has improved over time) but also thought a small price to pay for being here.Wasn't offered any other options.

    Still NED last CT March 09 and loving it. 

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  • orange1
    orange1 Member Posts: 930
    edited August 2009

    Mitch - Its great to hear you're doing so well.  We all love that kind of post.

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  • Maire67
    Maire67 Member Posts: 768
    edited July 2010

    Another one dancing with NED since June 2005.    Did Herceptin for one year...every three weeks...so much easier than the other stuff.  esp AC.   Femara followed by Aromasin.  Side effects but I"m here and I'm dancing ...maybe slow dances but dancing with NED.  Aleve helps the joint pain. Herceptin is a miracle for me.  I have a friend who was in the early trials and is 9 years out.  My nose is still leaking....Hang in there. 

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  • cheers247
    cheers247 Member Posts: 270
    edited August 2009

    Hello, joining roll call.  I did AC first, not am getting weekly H with Taxol (inpatient, I'm allergic to taxanes) lots of premeds. I have 5 more chemo's then I'll swithch to H every 3 weeks. and have a double mast & total hyst followed by daily rada for 6 weeks and a year of H.  I can't wait to be done, but more importantly be NED!  much love, Jessica

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  • janie44
    janie44 Member Posts: 1,460
    edited August 2009

    Hey ladies,

    I was checking back in to see how everyone is doing and saw this and thought it was the old thread.  Glad you started another one.

    I passed my 5 year benchmark in March and am still keeping company with our friend NED.  I was dx'ed in 2004 and in the wonderful clinical trial  when the news came down in April of 2005 -- the news about our trial being so successful that Herceptin was going to be offered to every HER2 patient.   I was a stage III'er with an initial poor prognosis. That changed with the trial results.  So, full steam ahead ladies.  There is great hope for all of you!

    Hugs.  Janie

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  • orange1
    orange1 Member Posts: 930
    edited August 2009

    Maire and janie -

    Thank you so much for posting.  You just made my week.  I was just starting into a thinking about my own funeral kind of week and your posts just stopped that cold. 

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  • sheila888
    sheila888 Member Posts: 25,634
    edited August 2009

    Hi girls, The news of April 2005 helped me a lot . I was one of the first patients started Herceptin with Taxol. God Bless the Dr who found The miracle drug ( i don't remember his name but   i saw the movie on Lifetime.)

    I am another example who benefited from it. 4 years 4 months out. Looking forward for the Big 5.

    Wishing the best to all of us.

    Smile Sheila Smile

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  • HopingforaCure
    HopingforaCure Member Posts: 163
    edited August 2009

    I finished Herceptin treatment last June and am doing well--just had check up with oncologist this week and all looks good.

    Loved that Lifetime movie--saw it last year.  Here is a blurb about it:

    Emmy(R) and Grammy(R) Award winner Harry Connick, Jr. ("Will & Grace," "Hope Floats") stars in the Lifetime Original Movie, "Living Proof," the moving true story of Dr. Dennis Slamon, the UCLA doctor who helped develop the life saving breast cancer drug, Herceptin, and his efforts to keep the drug trials afloat and save the lives of thousands of women.

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  • weety
    weety Member Posts: 1,163
    edited August 2009

    I'm new, too.  I start my TCH on Friday, August 21.

    My oncologist told me that Dr. Slamon may very well win the Nobel Prize for his work with Herceptin.  I hate having breast cancer, but in a sort of way, I am excited to be a part of something so miraculous in the medical world!

    Cathy

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  • Sassa
    Sassa Member Posts: 1,588
    edited August 2009

    Just saw my oncologist today (2 1/2 years since the end of chemo, 1 1/2 years since the end of herceptin).  CT/PET scan was negative, all bloodwork results were exactly where they should be.

     Yippee!! I am off the once every three months follow up schedule; oncologist doesn't want to see me for six months and she told me to get rid of the port (she wanted me to keep it in case of problems).  I will be calling the surgeon tomorrow for the port removal.

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  • rosemary-b
    rosemary-b Member Posts: 2,006
    edited August 2009

    Sassa,

    I am so happy for you. I am about 8 months behind you and can't wait to get off the 3 month schedule.  I will keep you in my thoughts and prayers.

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

    Sassa - Woo hoo for a clean scan and normal bloodwork!!! Congratulations!

    I'm in the same situation - finished Herceptin in April - got clean scan results last week and get to get the port out. I started the 3-month schedule in April - I did not see a doctor from June 2 - August 11! SO much more fun than last summer's chemo schedule. 

    Where do I send my letter to the Nobel committee supporting Dr. Slamon?

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  • sheila888
    sheila888 Member Posts: 25,634
    edited August 2009

    Hi Again, I couldn't help it after reading this page all over again I got so overwhelmed with happy feelings Ihad to write and say.

    <<<<<<<<<<<<<CONGRATULATIONS AND THANK YOU DR. SLAMON>>>>>>>>>>>>>>

                                                                AND

    <<<<<<<<<<<<<HEALTHY, HAPPY, CANCER FREE LIFE TO ALL OF US>>>>>>>>>>>>>

    Cool Cool Cool SHEILA Cool Cool Cool

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