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Topic: HERCEPTIN and/or PERJETA Threads

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Dec 4, 2014 05:13AM

Teakie88 wrote:

I am currently on Herceptin and Perjeta with Zometa every three weeks. Would love to hear from others who have been on this targeted therapy and how well the treatments have been working for you..

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 28, 2014 03:04PM Teakie88 wrote:

AMEN!!!!!!! to your last statement CarlaK! Ann

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 28, 2014 04:24PM KLynn wrote:

Shutterbug, YES...mine too....it's just long enough to hurt like h*ll when you wear your wig..!!..I'm still pushing it under.. BUT there is no way I could not wear my wig yet....oh, but when I take it off at night, the head really is sore from the hair bending all different ways..I've tried everything, gelling it down flat first, just shampooing it and drying it, nothing working...funny, you hate to complain about the hair hurting so much, when you are just so happy to have some again...as ugly as it is..I still really don't have much hair follicle on the ends yet, it seems to come out very easy if I pull a piece...so I'm not quite sure this is here to stay.. I do think I went without my wig at this point years ago when my hair started coming back...but it was so curly, at least it had a shape.....I was also not all grey like I am now...the 14 yrs have really made a huge difference..lol....I still have no eyebrows or eyelashes though....my blank canvas face is starting to get to me.....K...

How lucky I was to have known someone, that was so hard to say goodbye to.... Dx Stage IV, 6/17 nodes, ER+/PR+, HER2+
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Dec 28, 2014 09:34PM sueopp wrote:

Dear K - I am a huge fan of permanent cosmetics. My eyebrows finally came back when my hair did but so lightly that they might not have been there at all. I am pretty bad with a pencil. Over time I had to accept that this was the best I was going to get (rats) so I found a good perm cosmetics person and she "did" my brows - very worth it. Whatever we have to do ... SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Dec 29, 2014 11:05AM KLynn wrote:

ohhhhhh Sue, I LIKE IT....okay, time to look into it...right now I have sties on my eyelids...I get them ( at least two or three) on each top eyelid, every taxatere treatment....I don't know if it is irritated hair follicles or what but I couldn't get permanent eyeliner right now....BUT the eyebrows would be wonderful...at least give me less of a blank look face....Thanks.....asking doc on Weds. If I can do it now...!!......xo....K

How lucky I was to have known someone, that was so hard to say goodbye to.... Dx Stage IV, 6/17 nodes, ER+/PR+, HER2+
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Dec 29, 2014 01:21PM bhd1 wrote:

Kalyn I also have permanent eyebrow makeup. Love it

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 29, 2014 08:46PM KLynn wrote:

Okay....THATS IT...!!!,!.....Im so excited, I'm going to look into it....It is something I truly deserve after all these years....the eyebrows really bother me...Thanks ladies....always great info here...K....

How lucky I was to have known someone, that was so hard to say goodbye to.... Dx Stage IV, 6/17 nodes, ER+/PR+, HER2+
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Dec 29, 2014 09:48PM bhd1 wrote:

Make sure you get a good recommendation. Permanent eyebrow makeup is a tatto. Don't know where you live, but I know someone in quakertown, pa

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 29, 2014 10:18PM sueopp wrote:

K, likewise I don't know where you are located, but I have a great person in suburbs of Maryland. PS: my view (and I think bhd1 would agree with me) is to just concentrate on the brows. Eyelids (permanent eyeliner) was a waste, wore off fast and hurt to have applied, right Barb? Go for it, K! SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Dec 30, 2014 12:37AM bhd1 wrote:

I agree with sue. You don't need permanent eyeliner. But the brows frame your face. I get lots of compliments. I love mine. I wear sunglasses when golfing to keep them from fading. Between my wigs and my makeup, I think I look better than before diagnosi

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 30, 2014 07:58PM Kaelia wrote:

Hi ladies, I've been on Perjeta and Herceptin for over a year. I had my round of chemo 2 weeks ago. A week ago, my whole body started itching (scalp, arms, legs, back, tummy, etc...) At first, I thought it has to do with the body lotion or shampoo but it's been ongoing although I now only use coconut oil on my skin. I had a rash on my leg; I applied coconut oil on it and it was gone the next day. No more rash for now but my body is still itching. I bought some Benadryl pills and taking 2 does help temporarily but only after getting me completely drowsy and sleepy , so I can't really function for the rest of the day. It comes like one day out of 2.  I also have more neuropathy than usual on the tips of my fingers and a heightened sensitivity of the skin inside my hands.  

Any ideas, experience to share or thoughts?

Dx 10/5/2012, IDC, 6cm+, Stage IV, metastasized to liver, Grade 3, ER-/PR-, HER2+
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Dec 31, 2014 05:25AM Teakie88 wrote:

Kaelia: When I was on Taxotere, Herceptin and Perjeta a couple of months ago, I had a rash develop on the underside of my arm that lasted several days, itched a lot, and then disappeared after about a week. I am now just on Herceptin and Perjeta and haven't had any more rashes. I did develop some neuropathy in my left hand on my pinky side. Some days it's okay and some days it's a little more noticeable, but I can certainly handle that without a problem. Ann

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 31, 2014 11:03AM KLynn wrote:

Hi ladies....I haven't had the rash you are talking about, but every once in a while, my palms will itch like crazy, get hot with my scratching and rubbing...I also will get a full body tingle, itchy all over, but there's no rhyme or reason to it, or when I get it....crazy...there's no figuring it out at all...I also get Her/perjeta/taxatere.......no neuropathy really to speak of YET either...I seem to get every other side effect though...lol...

Thanks ladies about the eyebrow info...and yes I would only consider the eyebrows at this point....My eyelash area is just too sensitive and that kind of gives me the willies anyway......

Off to chemo today, dragging my feet..all three drugs today....And everyone wants to go out tonight..Maybe they have something "special" they can add to my meds...a booster...lol....K...

How lucky I was to have known someone, that was so hard to say goodbye to.... Dx Stage IV, 6/17 nodes, ER+/PR+, HER2+
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Jan 1, 2015 06:34PM Kaelia wrote:

Thanks for sharing  Ann. I am just on Herceptin and Perjeta , I had minor itching in the past but nothing like that :-( I will call my onc; maybe it's non-chemo related...and hopefully it will disappear quickly like yours did Ann.

Klynn, I used to get the combo along with Taxotere and I also had back then a lot of the others side effects than neuropathy. I remember when I lost all my eyebrows, I used to lightly pencil draw them and fill in the space with eyebrow makeup. Ironically that's when I got a lot of compliments on my eyebrows. If only they knew I had none back then!  Now they have all grown back to normal and it's my eyelashes that are not quite there yet. It may be different for everyone.

Hope you all enjoyed your New Year!

Dx 10/5/2012, IDC, 6cm+, Stage IV, metastasized to liver, Grade 3, ER-/PR-, HER2+
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Jan 2, 2015 12:36PM MarshaMay wrote:

I don't have any rash but do have Zeloda-like blisters on my hands and the tips of my fingers. I've been on H/P for almost a year and a half (minus the four months off for cardiac troubles) . My feet are peeling too, just like Zeloda which I was on earlier.

My fingers are pretty useless, I can barely get an egg out of the carton and cracking it hurts. How silly. I think it's a small price to payfor NED.

MarshaMay Dx 10/26/2011, 2cm, Stage IV, 12/13 nodes, mets, ER-/PR-, HER2+ Targeted Therapy 10/31/2011 Herceptin (trastuzumab) Chemotherapy 10/31/2011 Navelbine (vinorelbine) Surgery 4/30/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 6/30/2012 Navelbine (vinorelbine) Targeted Therapy 12/31/2012 Tykerb (lapatinib) Chemotherapy 12/31/2012 Xeloda (capecitabine) Targeted Therapy 7/29/2013 Herceptin (trastuzumab) Targeted Therapy 7/29/2013 Perjeta (pertuzumab) Chemotherapy 7/29/2013 Taxol (paclitaxel)
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Jan 6, 2015 05:12PM - edited Jan 6, 2015 05:17PM by Shutterbug73

Hope everyone enjoyed the holidays!

I have a question - For those of you who had a chemo drug along with Herceptin and Perjeta before moving to Herceptin and Perjeta only, how long were you on the chemo drug? My oncologist first said 6 rounds of Taxotere, but after my 6th round said he wants to do scans and maybe do another 3 rounds.


“‎Life is a shipwreck, but we must not forget to sing in the lifeboats.” ― Voltaire Treatment summary: 9/15/14: Also began with Xgeva every 6 weeks. 12/29/14: Last Taxotere. 1/1/15 Changed Xgeva to every 3 months Dx 8/18/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2+ Radiation Therapy 8/27/2014 Bone Targeted Therapy 9/14/2014 Herceptin (trastuzumab) Targeted Therapy 9/14/2014 Perjeta (pertuzumab) Chemotherapy 9/14/2014 Taxotere (docetaxel) Hormonal Therapy 1/18/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 3/29/2017 External: Bone Radiation Therapy 4/14/2019 External: Brain
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Jan 6, 2015 06:17PM Fitztwins wrote:

I think my doctor said 3-4 months on the tax. then alone with the other.

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/19/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 2/1/2005 AC + T (Taxol) Radiation Therapy 5/1/2005 Breast, Lymph nodes Targeted Therapy 6/1/2005 Herceptin (trastuzumab) Hormonal Therapy 1/1/2006 Femara (letrozole) Hormonal Therapy 6/2/2008 Aromasin (exemestane) Targeted Therapy 7/1/2008 Herceptin (trastuzumab) Hormonal Therapy 6/15/2013 Arimidex (anastrozole) Targeted Therapy 9/5/2015 Perjeta (pertuzumab)
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Jan 6, 2015 06:22PM mikarae wrote:

Hello Shutterbug - I did 6 cycles of Taxotere but the plan was to do 8. Karen <3

Stage lV. Bone mets at time of diagnoses. Currently, bone mets resolved and one active supra-clavicle node. Surgery 1/15/2014 Lymph node removal: Left, Underarm/Axillary Surgery 1/15/2014 Mastectomy: Left, Right Dx 2/19/2014, IDC, Left, 2cm, Stage IV, Grade 3, 18/18 nodes, mets, ER-/PR-, HER2+ Targeted Therapy 3/4/2014 Herceptin (trastuzumab) Targeted Therapy 3/4/2014 Perjeta (pertuzumab) Chemotherapy 3/4/2014 Taxotere (docetaxel)
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Jan 6, 2015 07:05PM Teakie88 wrote:

Shutterbug: I did six rounds of Taxotere along with H & P, and then just went to H & P alone. Ann

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Jan 6, 2015 07:11PM - edited Jan 6, 2015 07:14PM by sueopp

Shutterbug- my doc put me on navelbine (with H and P) rather than taxol or taxotere and I did this for a year and a half (!). Stayed stable and would have continued, except my stomach just couldn't take it any more. Am now only on H and P, and he plans to scan at 6 months to see what's happening. SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jan 6, 2015 08:50PM Shutterbug73 wrote:

Thank you ladies. I'm not sure what criteria he will use to determine if I should stay on it. I made the mistake of saying that I was nervous about dropping it. He almost seemed excited when I said that and said "well, you could continue on it for a few more rounds", which I am happy to do if it is really going to make a difference

Wow Sue...a year and a half! Whew! I can't complain, really. My SE's haven't been too bad on Taxotere.

“‎Life is a shipwreck, but we must not forget to sing in the lifeboats.” ― Voltaire Treatment summary: 9/15/14: Also began with Xgeva every 6 weeks. 12/29/14: Last Taxotere. 1/1/15 Changed Xgeva to every 3 months Dx 8/18/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2+ Radiation Therapy 8/27/2014 Bone Targeted Therapy 9/14/2014 Herceptin (trastuzumab) Targeted Therapy 9/14/2014 Perjeta (pertuzumab) Chemotherapy 9/14/2014 Taxotere (docetaxel) Hormonal Therapy 1/18/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 3/29/2017 External: Bone Radiation Therapy 4/14/2019 External: Brain
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Jan 6, 2015 09:48PM KLynn wrote:

Hi ladies...ughhh...I just started round 9 ofthe taxotere with the herc/perjeta...I'm so tired of the taxotere and was hoping to ask for a break...Just saw doc today and my markers are both UP....I know I know they aren't always accurate, BUT mine always have been....So he is scheduling scans.....I can't even think about switching to YET ANOTHER DRUG...I can't....my hair is just about 21/2 inches long, I was just thinking about coloring it...I really don't want to lose it again...I'm not ready to do it all again.....it's way to cold here to be bald, and my scalp was just starting to warm up...lol...WHY DOES THIS ALL HAVE TO BE SO HARD....?? All the time.....????....okay , ranting done..sorry ladies....K....

How lucky I was to have known someone, that was so hard to say goodbye to.... Dx Stage IV, 6/17 nodes, ER+/PR+, HER2+
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Jan 6, 2015 10:18PM Teakie88 wrote:

Rant away! Everyone here has been there, done that too! Tomorrow's another day with a brighter outlook! Hang in there! Ann

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Jan 6, 2015 10:46PM KLynn wrote:

THANKS ANN, ...Like I said I've been doing this for a long time now, 14 1/2 years...last 9 yrs as stage 4....I've had so many ups and downs, I don't know why this is hitting me so hard this time..I just feel beaten...like I'm running out of options, and never being able to get that break again, to feel normal for a stretch....

One of my biggest concerns has always been, " Will I know when to stop.? When to just let it be, before I get so sick that I don't have much time.."..I don't want to be tskingbdrugs in the hospital right up until my last breath...I've watched friends and my mother just keep taking the drugs desperately trying to live,  being so sick..BUT not stopping soon enough to at least have a little time to regroup before leaving this life...If that makes sense...I try to explain this to my Doc...when there really is no miracle, please just say so...please....yep, tomorrows another day...I'm sure I'll bounce back mentally...:-)...thanks for listening...K...

How lucky I was to have known someone, that was so hard to say goodbye to.... Dx Stage IV, 6/17 nodes, ER+/PR+, HER2+
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Jan 6, 2015 10:53PM Teakie88 wrote:

Klynn: You have been at this a long time but I so congratulate you on taking every day as it comes and running with it. All of us hope tomorrow has a brighter outlook for you, and we all hope to be able to continue on as long as you have! Rest easy tonight. Ann

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Jan 6, 2015 11:07PM sueopp wrote:

I am listening, K, and sending love. SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Jan 7, 2015 07:39AM Shutterbug73 wrote:

KLynn - I'm sorry to hear about your tumor markers. I will hold out hope for you that in this case that they are not accurate.

It is easy for those of us just starting out with Stage IV to look to those of you who have been at this for awhile and say "Wow. 9 years! How wonderful!", but we don't always think about all the ups and downs that go along with it. I'm struggling through my first hair loss experience, I imagine it only gets harder.

“‎Life is a shipwreck, but we must not forget to sing in the lifeboats.” ― Voltaire Treatment summary: 9/15/14: Also began with Xgeva every 6 weeks. 12/29/14: Last Taxotere. 1/1/15 Changed Xgeva to every 3 months Dx 8/18/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2+ Radiation Therapy 8/27/2014 Bone Targeted Therapy 9/14/2014 Herceptin (trastuzumab) Targeted Therapy 9/14/2014 Perjeta (pertuzumab) Chemotherapy 9/14/2014 Taxotere (docetaxel) Hormonal Therapy 1/18/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 3/29/2017 External: Bone Radiation Therapy 4/14/2019 External: Brain
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Jan 7, 2015 10:24AM KLynn wrote:

Thanks Ann, Sue, Shutterbug....I think the hardest part is when a new drug fails us...( maybe I'm jumping the gun, we'll see what scans say...but...) ..Once you become stage 4 and kind of accept the fact that you will always be in some kind of treatment, and know that you will always have cancer, you tend to jump into this fighting hard, but without an end...not like the first dx...with each new drug you feel hope...You know you are always on the edge waiting for something new to be approved, or in trial....You just accept what side effects that will come with it and hope to get a good run with the drug...So when one after another stops ( after a short run) working it just gets scary....I'm usually a very very up person...I get the stares in the chemo room from other patients, as to WHY I'm even there...I do my hair, my make-up..( without stinkin ' eyebrows.).lol...and I try and wear my clothes, not sweats...makes me feel better, and alive....not so much of " the sick girl" .......well going for chemo today...!!?..it's darn cold here, but not nearly as bad as other parts of the country...good luck to any of you in those brutal areas..this old worn body needs warmth...we were hoping to get out of here and go to Florida for a week or so to warm up...I need vitamin D ...desperately for the physical and mental effects...lol..yeah, that's it..!!...K...

How lucky I was to have known someone, that was so hard to say goodbye to.... Dx Stage IV, 6/17 nodes, ER+/PR+, HER2+
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Jan 7, 2015 10:46AM KLynn wrote:

ps....I shouldn't be feeling so sorry for myself, I guess...I did get a really long run with Xeloda, ( for a good year and a half) ...that was over a year ago, so this last year has really been the tough one..., just wearing me down........Klynn...xo

How lucky I was to have known someone, that was so hard to say goodbye to.... Dx Stage IV, 6/17 nodes, ER+/PR+, HER2+
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Jan 7, 2015 07:50PM Fitztwins wrote:

Kylnn

I feel your pain. I had an amazing run with tykerb/herceptin 4 years, with a few ups/downs..(and running to the bathroom a lot), But now I am on Taxol/H/P. My hair is coming out, I am tired, worried about the weight and if it doesn't push back the cancer I will be upset. I just think I am going to be this fat dumpy bald middleaged lady.

I will be honest, after 7 years I am tired. Really tired. I lost it this past fall with all of the SS bull crap. Switching back to a chemo and losing my hair pushed me over the edge. Part of me wants to just lay in bed and read until this is over... I have always been a realist, but somewhat upbeat... but facing a future feeling the way I do right now I will admit is really tough.

I have gone postal on my family to step it up. 14 year olds are lazy! I am not brave or courageous, I just keep pushing on because I want to raise my kids for as long as I can. If my quality of life begins to suffer, I may be the first to say enough...another option, or be done with it.

So I am in the middle of the chemo depression and pity party. Invitations going out tomorrow...

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/19/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 2/1/2005 AC + T (Taxol) Radiation Therapy 5/1/2005 Breast, Lymph nodes Targeted Therapy 6/1/2005 Herceptin (trastuzumab) Hormonal Therapy 1/1/2006 Femara (letrozole) Hormonal Therapy 6/2/2008 Aromasin (exemestane) Targeted Therapy 7/1/2008 Herceptin (trastuzumab) Hormonal Therapy 6/15/2013 Arimidex (anastrozole) Targeted Therapy 9/5/2015 Perjeta (pertuzumab)
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Jan 8, 2015 01:26AM Kjones13 wrote:

shutter--I had 18 (weekly) infusions with taxol. I was so ready to be done with the se's. if you are tolerating tax so well, maybe he wants to push on...hopefully their is a benefit from that!?

K--like shutter said, I hear 9 years and get excited. I have small children I need to see grow...you give me hope. Hope that it's possible. Possible to do well and have good qol and then do a 180. Always searching and hoping for the next one to work. Qol is important. I have a friend who is dying right now. She's 40 and has 3 kids. She made the choice when she got diagnosed with brain mets she wanted hospice. That woman has traveled and made precious memories with her family. They all know what comes next...hospital bed in the living room. Lots of drugs for pain. Lots of sleep. Not much coherent talk. We all have to figure out our STOP button. No right or wrong. It just is. I can understand the feelings of defeat. It's a new day. Still playing the same game. New team. I hear they are really good!! :) sending hugs.

Romansma--who all is invited? I suggest we ditch the cold weather and head south to a tropical island so we can "share" our feelings and drink lime n da cocoanut!!!!! Yum. You just keep that family of yours chugging right along. They need you as much as you need them. Taxol is a bitch. They all are. The weight will come off when you are done. Don't shop for fat clothes..no fun..waist of money...my worst se from your current combo was diarrhea. Don't eat sugar ( which is my favorite food group)...you will want to die! Wallow in the pity for a few days then move on. Or you can join my club and keep increasing depression meds. 14 year olds are the armpit of teenagers. Smart and sassy. Bless you my friend!

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/8/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy: Right

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