Taxol and Herceptin only for stage 1 HER 2 positive?

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  • Tabbygirl521
    Tabbygirl521 Member Posts: 97
    edited October 2014

    Sandy, I got all teary-eyed reading about the great video surprise from your friends. That is about the best gift I can imagine. Pure love!

  • MarieNJ
    MarieNJ Member Posts: 183
    edited October 2014

    Sandy - How wonderful!  Yes, time does move quickly when you get to the end of each journey.  When I had my last dose of TH, I thought too that I wouldn't get my triple dose of Herceptin until 3 weeks later.  I had it the following week - no premeds - done in 1/2 hour! Yay  I'm 62 and so far it has worked out great for me.  They will do an echo cardiogram every 3 months to keep a good check on our heart function.  We'll all be fine!!

    Good luck on your next journey!

    Hugs

    Marie

  • kerensa75
    kerensa75 Member Posts: 28
    edited October 2014

    congrats Sandy!!!

  • Tabbygirl521
    Tabbygirl521 Member Posts: 97
    edited October 2014

    My last Taxol infusion will be Friday. I am so excited! I didn't realize Iy would be only one week before starting Herceptin only. I already had my echo, though my onc wanted to wait a bit, due to my insurance company deciding WHEN I could have it. My heart function is still normal. Such a relief, as I'm 61 and have a few other risk factors, too. So full speed ahead!!

  • DaniellaD
    DaniellaD Member Posts: 228
    edited October 2014

    Congrats Sandy!!! Now just drink lots of water and move around to start getting that chemo out of your system so you start feeling like yourself again.  

    I had #9 yesterday and just can't wait for this to be over.  I woke up and even with my contact lenses I feel like my eyes are blurry.  Last treatment hit me hard so I'm anticipating what will be this week.  I'm going to try and take a walk this morning before the fatigue hits.  

    Good luck Tabby! At the finish line!

  • april8
    april8 Member Posts: 29
    edited October 2014

    congrats to those who are nearing the end!!! I'm so happy for all of you!!!

    I had #2 of 12 today. Much less Benadryl, much lower Herceptin, but I was going nuts with restless legs, feeling antsy and so out of breath when I stand. I gained .7 pounds since last weeks-get so hungry for two days after infusion! Has anyone else had this uncomfortable antsy experience? The nurse told me to start refusing Benadryl after the next treatment. Btw going broke from the separate co pays for each med-the only one that offers help is Gentech Foundation for Herceptin.

  • Nancy6540
    Nancy6540 Member Posts: 26
    edited October 2014

    April I know that antsy feeling from the Benedryl! It is horrible! After my first infusion they stopped my Benedryl and exchanged it for something else like "Hydrocoticine" (?) I don't know exactly what it is, so don't quote me, but it is given to me with the other pre-meds only in pill form. Two little white pills. It almost sedates me but it has been a godsend! Up until that point I was lucky if I got three hours of sleep a night! Your medical people will know what it is. I could not stand the restless leg syndrome that the Benedryl gave me, it was horrible!

  • myturn44
    myturn44 Member Posts: 11
    edited October 2014


    Congrats Sandy! The video sounds awesome! Wishing you the best moving forward! 

    Tabbygirl your so close, Happy Halloween! :)

    Monday was #5 of 12, wish I was closer to being done!  I must say the SE's last week and this week are not as bad as the first 3 weeks. I'm very grateful for that!  I am hoping to continue the trend. I need to get more walking more in, that does help and drinking lots of water. I am feeling mostly some fatigue, acidy stomach and moodiness. The mood swings are like riding a roller coaster, it's crazy! 

     I decided to be brave and go bald. I had my remaining hair shaved off yesterday. I got a wig and few caps. I liked the wig at first but not sure now. Need to give it time.  I am glad to be done shedding. It was like a long drawn out breakup with my hair, I still see it everywhere in the house...  If in doubt as to whether to shave it off or see if can make it, I would have to suggest shaving. I should have done it sooner. The hair loss has been my biggest emotional issue so far, the lumpectomy didn't bother me as much as this does.   I know it will grow back but I still don't like looking so different from my normal 'me'. If that makes any sense at all.

    April8, I get that anxious feeling too, hopefully it gets better.  I sometimes take Lorazipam (sp?) for that. Its seems to be a multipurpose drug, nausea, sleeping and/or anxiety. 

    Well, I wish everyone a Happy Halloween and a good weekend.

    -Beth

  • april8
    april8 Member Posts: 29
    edited October 2014

    thanks Nancy and MyTurn44-it was really bothering me! My SEs from the drugs so far are not what I was expecting. The nerve pain flashes are awful-from the spine, to the rectum to the legs. Dreading the hair loss after week 4, but I have two wigs lined up (I HATE them-my hair is silver white and there is something about the wigs that ages me 20 years). I am so out of breath today-is it the Taxol or the Herceptin? I will never sleep tonight.

  • MarieNJ
    MarieNJ Member Posts: 183
    edited October 2014

    Happy Halloween Ladies,

    Congratulations to those who finished taxol and to those who are at the end of this part of the journey!  To those who are just starting - hang in there - you can do it.  Everyone will experience some side effects.  Just remember, you have an army, navy and marines in there fighting.

    I have been finished with taxol since Aug 25th.  My experience was: when I was too tired from the benedryl, I asked them to lower the dose.  As I got to about mid-point, I asked them to lower the steroid.  I had rashes which went away with prescribed creams. I had and still have neuropathy. I saw a neurologist oncol. He prescribed Lyrica (once I was done with taxol).  It is chemo-induced neuropathy.  I was told that some things will clear up very quickly when you finish taxol and some things can take their time.  I had it it in different areas of my body: back, abdomen, face, feet and hands.  Thankfully, it is improving.  

    My suggestion is to drink plenty of water 8-10 glasses a day to flush the toxins out.  Walk at least 30 mins a day.  Keep a log each week of se's to run by your MO at your visit.  Make sure you call your MO if you think it warrants it.  Don't be shy.  That's why they get the big bucks!

    Hugs and Happy Halloween!

    Marie

  • Nancy6540
    Nancy6540 Member Posts: 26
    edited October 2014

    Marie, did all of your hair ever fall out or just thin out? I have just finished the fifth infusion of TH and I am shedding quite a bit but am hesitant to buzz it hoping I may be left with some hair!

  • lumary
    lumary Member Posts: 5
    edited October 2014

    Good Morning

    Its been a while since i checked in.  I had #7 this week.  I am no longer having stomach(intestinal) issues.  I can pretty much eat  everything without upsetting my stomach.  I am staying pretty active.  I can go on long walks on my good days (3 miles 2 days per week)This week has been the worst in other ways for me.  My body aches more then ever.  Not sure I will be able to do my walks.   But the worst of all for me is the hair loss.  I am losing handfulls at a time.  I don't really want to shave it!  Will this continue?  Even though its coming out in large volumes, i don't have any bald spots yet.  I have SO much hair that if you didn't see the hair all over my shoulders you wouldn't even know.  This is the most difficult part for me.  I broke down last night at the thought of having to shave it.  Does this let up or will I continue to loose it until its completely gone?  Oh and the achy sore head, any cure for that? I know it's only hair but with my hair, I could pretend to be normal.  Without it I don't know that I can pull it off.

  • Tabbygirl521
    Tabbygirl521 Member Posts: 97
    edited October 2014

    For those having issues with Benadryl, I wanted to let you know that my onc offered non-drowsy Allegra instead, after giving me Benadryl for the first infusion. I liked it much better! Perhaps that is an option your oncs would consider?

    I am IN THE CHAIR, waiting for my labs to come back and then...WOOHOO! Last tx! Cannot believe it :)

  • SandyLovesLucy
    SandyLovesLucy Member Posts: 154
    edited November 2014

    Tabbygirl, I've been thinking of you all day.  Congratulations on getting to the finish line with Taxol!
    Nancy and lumary, I just finished my 12th Taxol this week and did not lose all my hair.  But, it is now super thin.  My sister convinced me that I could get by with headbands and hats but I think I'll be cutting it soon.  I had a little crying jag on Wednesday night trying scarves and things on my head and wasn't satisfied with any of it. So I ended up going to my customer the next day wearing my skinny hair!

    Myturn, that is a good expression - a long drawn out break up with your hair - that is the way I feel.  I have to work with customers at a trade show in a week or so and I think I just have to start wearing the wig.  It is a very emotional part of all of this and maybe would have been less draining if I had just gotten a short haircut to begin with.  But, then I think that I was able to keep the hair for quite a few weeks.

    It is day four past my last Taxol  and I've been very fatigued.  I can't wait for the last of this stuff to work it's way through and get some energy back.  I continue to take the B6 and L-Glutamine to deal with the slight neuropathy I experienced. I'm still so grateful to have been offered this treatment and hope all who are getting started now have an easy time of it.  You will get through it!

    Hugs,

    Sandy

     

  • MarieNJ
    MarieNJ Member Posts: 183
    edited November 2014

    Nancy -

    My treatments were on Mondays. The Friday before my 1st treatment started, I went to my beautician and got a very short pixie.  My hair started thinning around treatment #4.  It then picked up speed after each treatment.  I couldn't shave my head either.  It did get extremely thin with bald spots.  As my hair started to get new growth, the old wispy hair looked ridiculous.  My husband and I trimmed the wispy hairs.  It looks much better. If you don't want to shave your head, you may want to go to your hairdresser and tell him/her to cut it very short so that it is not as devastating.  It does grow back, remember.  It's 2 months past taxol and I have no bald spots anymore. It has all filled in with new hair.

    Good luck!

    Marie

  • Nancy6540
    Nancy6540 Member Posts: 26
    edited November 2014

    Marie and Sandy, thanks for the advice. I did have a beautician cut it very short so I don't look like a bag lady! It looks like a mushroom but I think it might do OK as it continues to shed thinner. It sure is easier to shower and towel dry than my normal haircut!

    My skin is so dry it seems my wrinkles have doubled! I put extra cream everywhere but I guess the chemo is cooking me so I will have to wait until this is over. It reminds me of the movie my daughter loved as a child "Dark Crystal" the bad characters would suck out the effense of the youngsters so they could plump up and be young looking. So when my daughter calls to see how i'm doing I tell her they're sucking out my effense and she laughs knowing Mom is just a little more wrinkled!

    April when I ordered my wig they made it salt and pepper. When I picked it up I hated it! My hair is more silver than pepper but the wig was dark. They allowed me to exchange it for another that was a very light strawberry blonde. ( I know crazy) but it looks OK. It actually makes me look younger. If the person looking at you doesn't know you they like it. Family on the other hand knows what you look like and to them it is foreign and not natural. I plan on wearing scarfs and hats on my wig when I have to wear it. My daughter is crocheting hats for me but I have a small head with low forehead and now more wrinkles so not a pretty picture! Thanks to Marie's experience we have hope we won't have to hide our heads forever just Winter, and what better time to wear a hat!

    Hope everyone is progressing well with few side effects! I threw a bloodclot in my jugular vein and wound up in the hospital. My body and the chemo/cancer is causing them to form around the port tube. It seems they can't dissolve it, my body has to reabsorb it! Now they have me on blood thinners for the rest of the year until I finish treatment! Always something!!

    I'm off for #6/12 so greatful I will be halfway through the Taxol!

    Have a great day everyone! We can do this!

    {{Hugs!}}

  • DaniellaD
    DaniellaD Member Posts: 228
    edited November 2014

    It's day 5 after my last taxol treatment and the fatigue will not let up. I am weak and shaky.  My equilibrium feels off at times.  I kind of slipped down the stairs more than once, again. Also, I have no appetite and water tastes like poison. Having random waves of nausea still.   I'm living on club crackers and ginger tea.  Any suggestions?  I have #10 on Wednesday.  

  • MaggieCat
    MaggieCat Member Posts: 315
    edited November 2014

    Hello.. and thanks so much for this amazing thread. The path results from my biopsy says Er-,Pr-, HER2+ (3+), ~ 1 cm. I am looking at

    ATEMPT: A randomized Phase II study of adjuvant Trastuzumab emtansine (T-DM1) vs. Paclitaxel in combination with Trastuzumab for Stage I HER2-positive Breast Cancer

    My lumpectomy and SNB happened 10/31.  Final path results anticipated later this week. So far everything has said "Stage 1".... Scheduled 11/17 for MO review with UNC-CH researchers... ...

    I have started a "cut and paste" document taking tidbits from your comments on how to survive this journey!

  • MarieNJ
    MarieNJ Member Posts: 183
    edited November 2014

    Daniella -  You have just 3 more to get to the finish line!  Hang in there!!  Did they lower you on the steroid?  You're probably crashing from it.   You may want to tell them to lower it.  I think you are feeling nausea bc you are not eating.  Try wheat toast w/peanut butter and sliced apple in the morning to get you started.  Even if it tastes lousy, drink lots of water.  The taxol will be active in your system for 1 month after you finish and 6 months in your system inactive.  So continue to drink. 

    MaggyCat - Welcome to a thread we wish you didn't have to join.  You are here and you will learn a lot.  Remember everyone is different and you may not experience the same se's as others.  You should finish your profile or put it on "public" so we can get a better idea of your  situation.  Good luck to you as you begin this journey.  You will be at the finish line before you know it.  It really does go fast.  

    Marie

  • DaniellaD
    DaniellaD Member Posts: 228
    edited November 2014

    Marie - my steroids are down to only 2 mgs in premeds.  I now never have a good day. I'M sure not sleeping at night from the hot flashes isn't helping any.  I'm forcing the water and will take your advice on the pb and toast.  That's my go to when feeling like this anyway. Hope you're doing well and all the other ladies here. 

  • MaggieCat
    MaggieCat Member Posts: 315
    edited November 2014

    Thanks Marie.  I will finish my profile when the path results are in from the lumpectomy/ Sentinel node biopsies later this week.  When I tried to complete the profile last week, there were too many "I didn't know".  Things are moving pretty fast.  Knowing recommended supplements, thoughts on how to keep hair or not, icing toes and fingers or not, the challenges of Taxol and apparently the not so challenging herceptin (if the heart muscle cooperates)... Reading of this thread has been eye opening and extremely helpful!  My "inconvenient year - plus a couple of months" has just begun.

  • kerensa75
    kerensa75 Member Posts: 28
    edited November 2014

    MaggieCat, You are going to do great on your journey! Things went really fast for me too, just try and add info when you get it :)

    Ladies, I am doing much better on the Abraxane (Taxols sister drug), thank goodness! They have added 1 more treatment for me, so now I will get my last infusion on New Years eve.

    DaniellaD, hang in there hun, you got this!

  • SandyLovesLucy
    SandyLovesLucy Member Posts: 154
    edited November 2014

    Daniella, I'm so sorry that this is so hard for you right now.  Just hang on - you WILL be done soon.  The peanut butter toast is a great suggestion.  Make sure you are getting protein - yogurt, cheese, bland chicken or fish - whatever you can tolerate. Praying that things will ease up for you soon. Sending hugs your way.

    MaggieCat, welcome.  I did experience a fair number of side effects but found that they could be managed pretty well with diet adjustments, OTC medication, rest, and exercise. Good luck with your pathology results and keep coming back here.  It is a great place to ask "Has anyone else experienced __________? Whatever the question is chances are someone will have experienced it! The boards here and particularly this thread have gotten me through everything so far - testing, surgeries, chemo. 

    Kerensa75, it is so good to hear that you are doing well with the Abraxane. It WILL be a Happy New Year when you can celebrate the end of it!

    I had my first Herceptin only infusion today. They did the usual weight, blood pressure, temp, pulse, weight (uh oh, gained two more pounds - thank you steroids and Halloween candy...)  I wasn't expecting them to do blood tests but they did and my red blood counts are a little lower.  Then I was in for the Herceptin and the half hour flew by.  I'm heading to the wig place to get the wig adjusted in a couple of days.  I think I've squeezed out as many weeks as I can with my thinning hair. It is time to embrace the wig, hats, and headcovers and try to have fun with them.  I did wear a rather cute pink lacy-knit beret to my customer today. :)

    Hope everyone who shares or just reads here is doing well.  We are all kicking cancer to the curb!

    Sandy

  • TTfan
    TTfan Member Posts: 162
    edited November 2014

    Hi MaggieCat, I am enrolling in the same study, but in San Francisco.  It will be interesting to compare notes!  My intake appt is Nov 20, scheduled to start Tx Dec 2nd but I still don't know which arm I will be assigned to.  Scheduling my lab work, EKG, Echo, bone density ( I am ER + so will take AI also)  etc. now. 

    They want me to get a port placed before starting. I was kind of hoping to wait and see if that is really necessary, especially if I am lucky enough to get in the T-DM1 arm (treatments every 3 weeks rather than the every week Taxol arm.  

    Anyone with thoughts on pros and cons of ports?

  • lumary
    lumary Member Posts: 5
    edited November 2014

    Today should have been my #7 but I was too weak to get it.  My body feels like I was run over by a tractor trailer hauling cars (the real expensive heavy ones) twice!  I also have had fever for two days.  We're hoping I feel well enough Thursday to try and stay on schedule.  

    I ice my my fingers and toes and also chew ice chips and haven't experienced much neuropathy or mouth soars.  However, what I am experiencing is numbness on my tounge.   Has anyone else had this?

    My journey with the hair....   I picked up some hats to contain the shedding.  I have been loosing so much hair and the head hurts so bad that I may have to shave it off.  I only had 5 more to go!!!  I really want to hold out.   Does the pain in the head continue even after you shave it? 

  • april8
    april8 Member Posts: 29
    edited November 2014

    I go for #3 tomorrow. I was tired and dizzy over the weekend and got blindsided by terrible diahrrea on Tuesday morning. Today, I was starving-all so weird. My hair looks thinner overall but nothing huge yet. For anyone considering the port-get it-saves you so much time and pain. I will get mine out when I finish the one year of Herceptin. Hoping my blood count is ok tomorrow!

  • SandyLovesLucy
    SandyLovesLucy Member Posts: 154
    edited November 2014

    Lumary, sorry you are not feeling well.  My docs recommended Immodium for the D.  I was reluctant to keep taking it but it really did help.  I have STILL held off cutting my hair.  There is still a little to stick under hats but I'm still shedding and probably will continue for 2-3 weeks.  My last Taxol was last week. going to get my wig adjusted later today.

    April8, good luck today!  Fingers are crossed for a good blood count for you. I was on the fence about getting it, but my port has worked well and I'm glad I go it.

    Daniella, thinking of you and hoping you are feeling a bit better. Hope everyone else here is doing well.  

    Hugs, Sandy


     

  • kerensa75
    kerensa75 Member Posts: 28
    edited November 2014

    Lumary, my head feels much better now that I shaved it. It was sensitive before, almost like it was sunburned. Now it just feels much better. So glad I went ahead and shaved it. I feel better. I couldn't handle all the shedding.

  • april8
    april8 Member Posts: 29
    edited November 2014

    Hi Ladies: Help-I need some good thoughts today. Well, I passed the blood count tests-numbers were below the norm and I am anemic, but they said it was ok to go ahead. But I had the infusion nurse from you-know-where. She was borderline mean. She fussed so about accessing my port (made me lie back-ugh I hate that!!), the carried on that she had trouble drawing blood, then carried on that I couldn't stop Benadryl (nurse told me I could last week) and was going to give me the original, whopping order. Then at the end she says "you know, your hair is falling out. Has anyone told you about wigs or shaving your head." She was not nice in her tone. I told her that it only started yesterday. I have my wigs lined up but I just didn't want to talk to her anymore. Well, I really can't tell them that I don't want her again but she really was unpleasant. I don't want to have her roaming around me with an attitude. Based upon overhearing her with the other nurses, she seems to be a senior nurse. I have 9 weekly treatments left and then my thrice weekly Herceptin, and in the name of the great Wendy Williams, I don't want the diva reputation. So, ladies, any suggestions welcome. BTW, bought a mini Rudolph the Red Nose Reindeer in honor of the cutest movie ever coming out when I was 4 in 1964 and to make me remember my late parents and our annual delight when the show ran each holiday season. Mini Rudolph was hiding in my bag from Nurse Ratchett!

  • MaggieCat
    MaggieCat Member Posts: 315
    edited November 2014

    Path info is in... honestly gotta do some Googles to figure what this says!!!

    Invasive ductal
    carcinoma and ductal carcinoma in-situ... greatest dimension 1.2 cm ...
    Nottingham - tubule formation:2, Nuclear pleomorphism 2-3, mitotic
    count:1 (Grade 6/9, Moderately differentiated) HR-, Pr-, HER2 (3+),
    Ki-67 - 67% cells positive



    In gross description section



    intraoperative "left breast lumpectomy" .... 12 gm excision of tan-white
    to yellow lobulated breast tissue measuring 3.9 x 3.6 x 1.8 cm. There
    is an ellipse of tan skin overlying the anterior aspect of the specimen
    measuring 1.5 x 0.5 cm. The specimen is oriented with sutures and
    differentially inked as follows: superior blue, inferior green, medial
    red, lateral yellow and posterior black....was sectioned to reveal a
    firm tan-gray lesion with sharply demarcated border measuring 1.2 x 1.1 x
    0.9 cm. .... The lesion is located less than 0.1 cm from the medial and
    inferior margins.



    Micropapillary and cribriforms types, intermediate nuclear grade.



    The ductal carcinoma is noted within and outside the invasive tumor and accounts for ~ 25% of the tumor load.



    Possible multifocal tumor is noted.



    Margins - Invasive component: Invasive carcinoma is less than 0.5
    mm from red inked medial margin, is ~ 1 mm from the black inked
    posterior margin. One tumor nest compatible with the invasive tumor is ~
    1 mm from the green inked inferior margin with some ink contamination.
    The invasive carcinoma is 4 mm or more from all other margins examined.
    In-situ component: Inked margins are free of DCIS but close. The DCIS
    is less than 0.5 mm from the inked medial margin, the closest margin,
    and is 1 mm from the black inked posterior margin and is 3 mm or more
    from all other inked margins examined.