Two more Herceptin treatments to go and now this!!!!

daybyday1
daybyday1 Member Posts: 22
edited June 2014 in HER2+ (Positive) Breast Cancer

I hope I'm posting this in the right place.  I've been lurking for over a year and have been inspired by all of your kindness towards one another.

I was diagnosed 7/5/07 IDC, Lumpectomy 3.2 cm grade 3, 1/3 nodes, ER/PR neg, Her2+, KI67 91%.

I had chemo and then Herceptin for a year.  My last Herceptin treatment will be in December Yeah!

About six months ago I was having back pain, headaches etc... Scans were done and nothing was found.  I chalked it up to the normal aches and pains we sometimes go thru.

For the last couple of weeks chest felt a little heavy, back pain more frequent and shoulder pain.  Had CXR 11/5/08 and no problems found.  Had a CT of chest done yesterday 11/10/08.  I was gonna just wait till I heard from my oncologist but nosey me, I checked online to see if the results were posted and this is what it said:

THERE IS SOME NEW SOFT TISSUE MASS IN THE LEFT AXILLARY REGION MEASURING 4 CM ON IMAGE #12 WORRISOME FOR NEW LYMPH NODE MASS AND NEOPLASIA.  THERE IS CONCERN OF OSSEOUS METASTATIC DISEASE, A BONE SCAN IS RECOMMENDED.  MULTIPLE HEPATIC CYSTS ARE AGAIN IDENTIFIED AT THE EDGE OF THE IMAGING FIELD.

I had a bone scan 6/5/08 and a CT of the chest 5/22/08.  WHY wouldnt this have showed up then??? 

Since the radiologist stated "worrisome" does that mean it may not be malignant???

I just got to the point where I was looking forward to getting rid of my port, losing some weight- had to take steroids with herceptin cause it always made my ankles swell, I had to forgo 2 treatments because of that.  My echos were always ok though. 

Has anyone else received this kind of news before your year was up on Herceptin?

Thanks!

· Share on FacebookShare on Twitter
«1

Comments

  • henny
    henny Member Posts: 89
    edited November 2008

    What a scary way to hear about this.  When you talk to your onc why don't you ask for a PET/CT scan and a new bone scan? The node in your underarm and the liver cysts may be nothing to worry about. The PET will tell you if the things the rad is looking at are metabolically active or not. The CT in the PET/CT scan will precisely match up with the PET so they could see if those things are active. 

    And worrisome doesn't mean malignant-just need a closer look. No one test is 100%-either positive or negative.

    All the best for you

    Henny 

    · Share on FacebookShare on Twitter
  • daybyday1
    daybyday1 Member Posts: 22
    edited November 2008

    My onc called yesterday to tell me the results (didnt tell him I already knew) and said that he is scheduling me for a biopsy and PET.

    This is what really pisses me off about how the ct scan was ordered.  I had gone to see my PCP two weeks ago because of my back pain and my chest feeling heavy.  I also had felt what I thought to be a lump under my arm and mentioned it to him but I thought maybe it was my imagination cause its not there all the time - just depends on how I'm laying.  He checked it out and stated he could feel it and ordered a chest xray and mammo (those tests came back fine).  He knew I was going to have my Herceptin treatment that same week and advised me to mention to my Onc what he had ordered.  Well..... when I told my onc he said you're fine, don't worry nothings there, dont listen to him he's just a PCP  WTF!!  He then said I'll order a ct of chest if that will ease your mind. Hmmm.  I told him dont order if he didnt feel anything and I went down the hall to get my Herceptin.  Well needless to say a couple of days later I get a call from Radiology to schedule the CT and the rest is history.  Well I guess its a good thing my PCP LISTENED to me.

    Its so frustrating when docs feel like just because lab tests come back negative that you should not be complaining about anything.  I think some of us put up with the pain/discomfort because we've been told it could be se's and we just deal with it.  I know I have.

    Now I'm just waiting on the call for the biopsy appt and the PET and praying that everything is ok.

    Thanks for listening.

    · Share on FacebookShare on Twitter
  • snowyday
    snowyday Member Posts: 1,478
    edited November 2008

    Good luck daybyday, let me know how your tests turn out.  It's good you asked it's better than worrying all the time.  I really get annoyed when I'm not listened to.  I really hope the tests come back okay,  Drs. are very arrogant and I for one have learned to get what I want.  Good luck

    · Share on FacebookShare on Twitter
  • rackchar
    rackchar Member Posts: 2
    edited December 2008

    Hello daybyday,

    It's been a while since your last post - just wondering how you are doing. I will keep you in my prayers. 

    I just had my first annual mammo since all the "excitement" began for me in March of '08. I had  lumpectomy, chemo, radiation, and now about three months into herceptin treatments (with recently diagnosed heart complications), and I just got a call that they've found something in the mammo that concerns them (same breast). I go in Monday for a dx mammo and US. What a bummer....more cancer for Christmas?! I guess the Herceptin didn't really work for me! 

    · Share on FacebookShare on Twitter
  • ejlj
    ejlj Member Posts: 211
    edited December 2008

    concerned for daybyday1 as well.  i hope we hear from her.

    rackar-I belong to a breastca support group and alot of the women that have had lumpectomies and also had radiation have gotten calls back regarding there f/u mammograms.  For all of them, the doctors said it was due to radiation and those were the changes they were seeing.  I hope this is the case for you as well.  Try not to worry-easier said I know!  What's the next step for you?

    · Share on FacebookShare on Twitter
  • daybyday1
    daybyday1 Member Posts: 22
    edited December 2008

    Happy Holidays to everyone!

    I'm sorry it has taken so long to update you guys.  I've been really down lately. 

    12/02/08 PET results stated:

    Suspicious site on rib that will be watched.

    Hypermetabolic activity within the left lateral breast, such a small focus that SUV values is not accurate, but this is definitely abnormal. Impression - Recurrent left breast cancer in the upper outer breast, recommend correlation with mammogram or ultrasound biopsy.

    Hypermetabolic activity in the left axillary region, SUV values up to 15. Impression -Metastatic left axillary lymph nodes, largest about 4cm.

    12/5/08 Ultrasound guided left axillary lymph node biopsy confirmed cancer.

    12/18/08 met with surgeon and he got his feel on and checked the left breast and was not sure he agreed with the findings on the left breast.  He wanted an MRI before we make a decision about whether surgery to axilla only or axilla and lumpectomy/mastectomy.

    Sooooo MRI scheduled for 1/5/09, f/u with surgeon on 1/15/09, radiation consult 12/29/08 and f/u with onc 1/8/09.

    I am just so overwhelmed.  When I went to see onc earlier this month he stated last month was my last Herceptin.  I was so sure December marked my 1 yr.  Oh well.  Not sure what type of chemo I'll be doing this go round but he did say I would go back on Herceptin after the chemo.

    I've read that radiation therapy to the axilla after surgery places a person at a higher risk for lymphodema.  Is that correct?

    My surgeon mentioned that the affected lymph nodes where very deep.  Does that have to do with the level 1,2,3 I've read some of you write about?

    Ok enough of this.......

    Everyone have a safe and Happy Holiday!

    · Share on FacebookShare on Twitter
  • waterlady
    waterlady Member Posts: 56
    edited December 2008

    I am sorry to read about your setback.  I wanted to know what protocol you were on, what chemotherapy drugs you were given, and if they were given concurrently with herception or was the herceptin given after the chemo?

    Also how many rounds did you do, and what interval did you have between rounds?

    I am asking, as I am researching this, and have found that there are several studies, which conclude that herceptin is more beneficial when given concurrently.

    Best wishes

    Fern

    · Share on FacebookShare on Twitter
  • daybyday1
    daybyday1 Member Posts: 22
    edited December 2008

    Hi waterlady,

    I had AC x4 every 21 days, then Taxol x4 every 21 days, then Herceptin every 21 days for 1yr.  I had problems throughout my treatment.  The first month I was admitted to the hospital twice for infections due to low counts.  I had allergic reactions twice on Herceptin (swelling of legs and face and rash) and had to skip two treatments. My echo's were always fine between 55 - 65%.

    I'm not looking forward to going thru this again.  I don't know what chemo I'll start off with or if Herceptin will be given concurrently with it.  I'll ask about that when I see my onc next month.

    Take care.

    Ev

    · Share on FacebookShare on Twitter
  • waterlady
    waterlady Member Posts: 56
    edited December 2008

    Hi Ev,

    You do have options going into this.  I would insist on whatever you do this time, that it is concurrent with Herceptin, also since you have failed chemo, you are eligible for several trials, which is something I would look into. Please feel free to email me off list and I can send you my number and we can talk.  I have not yet started chemo, but I have done a fortune of research.  You can always fire your oncologist, and get a new one.

    Best wishes

    Fern

    · Share on FacebookShare on Twitter
  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2008

    When my pathology report on a biopsy said "worrisome for cancer", it ended up being cancer. I think they are trying to be conservative and not instill fear.

    · Share on FacebookShare on Twitter
  • Carolina59
    Carolina59 Member Posts: 232
    edited December 2008
    Daybyday, I just want to say I'm so sorry you're dealing with this--no wonder you're overwhelmed and feeling down. 

    I did Herceptin concurrently with taxotere and carboplatin (TCH every 3 weeks--6 rounds) and then completed a year of Herceptin (just finished in Aug 08).

    I don't have any advice, although I agree with what waterlady said--look into clinical trials. Also talk to your onc about Tykerb, often effective if Herceptin has failed. And I think there are some other trials for those of us who are Her2+.

    I wish you the best and will be thinking of you.
    Carolina 
    · Share on FacebookShare on Twitter
  • mommytofour
    mommytofour Member Posts: 2
    edited December 2008

    Daybyday, just wanted to give you some more support...we all need it. After 5 rounds of TCH, I remained on just Herceptin for 14 mos. It kept the disease at bay until a few weeks ago when we found a small spot in my brain.  I had the procedure called the gamma knife two weeks ago and feeling fine. My docs have decided to switch me to Tykerb because it gets absorbed into the brain more than Herceptin.  Actually, it gets delivered to my house today for me to start.  Stay on top of those docs...we gotta be pushy...if it doesn't work...switch.  I'm new to this board ladies but new to bc...diagnosed in 2004. Daybyday...stay positive and surround yourself with positive people. I'm keeping you in my prayers as you put your boxing gloves on again. Mine are never coming off! Marilyn

    · Share on FacebookShare on Twitter
  • waterlady
    waterlady Member Posts: 56
    edited December 2008

    Hi Ev,

    Just checking in to see how you are doing. Have you had a chance to look at the website www.clinicaltrials.gov - I have heard good things about Rexin-G, it is currently used in the Phillipines.

    You may want to contact them and see if it is something you can do.

    Please keep us updated, we are praying for you.

    Best wishes

    Fern (waterlady)

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009

    daybyday1 first, I am sooooo sorry with what you are having to go through.  I am praying for you!!!  Second, what was your path report from your first "bout" with bc?  I am interested for several reasons.  I was dx in feb, did bi-lat mast, AC x 4 (mine were dose dense and every 14 days) then Herceptin.  I have 9 more Herceptins to go...I'll explain more about this in a second.  But I have been having horrible spine pain (this was there BEFORE bc) and so onc did a bone scan before I started the chemo to have a "base line".  Well back and neck pain had gotten so much worse so in Nov he did a 2nd bone scan.  But the whole time I was thinking "how could I have mets while I am still doing tx's"  so I didnt think it was possible.  Well bone scan showed advanced bone degeneration but no mets.

    So since I didnt like the SE's of Herceptin, I decided 9 tx's was enough and told my onc in November that I was taking a break.  When I went back in Dec I told him I was done.  But when I go back in Jan, after reading what has happened to you, I guess I will finish my other 9.........

    · Share on FacebookShare on Twitter
  • kimf
    kimf Member Posts: 334
    edited January 2009

    Ev,

    I don't check in as much as I used to, but noticed your post and wanted to let you know that I will be thinking about you this week and hoping everything goes as best as it can for you. It sucks that the Herceptin didn't work, but I feel that going back on it, or going on Tykerb if this dx is her2+ will work for you. They will be especially aggressive with the radiation and together with chemo/tykerb/rads hopefully you will do great.

    I had rads to five areas after mastectomy and reconstruction. I had 15 pos nodes out of 23, taken from all over.  I did develop a very slight lymphedema about a year after rads. I noticed immediately that my hand swelled b/c my rings were tight and my watch was too small. I sought out a lymphedema OT specialist who fixed me right up. In less than 6 mos my lymphedema was resolved and it hasn't come back...that was 18 months ago. Also, the radiation is so much more important than worrying about the lymphedema. Go at this as viciously as it has come after you...big guns and all of them!

    Best wishes,

    Kimf

    · Share on FacebookShare on Twitter
  • ejlj
    ejlj Member Posts: 211
    edited January 2009

    Ev, So sorry to hear of your setback.  I'll be thinking of you especially during this week while you receive all your test results and get a game plan.  Please keep us informed of your progress.     

    moodyk13-Please do not fool around with a HER-2 + tumor.  It's very aggressive and very sneaky.  Take whatever the doctors offer in regards to treatment.  I wish you well in whatever you decide.

    · Share on FacebookShare on Twitter
  • daybyday1
    daybyday1 Member Posts: 22
    edited January 2009

    Thanks to all of you for your concerns and advice.

    I had the MRI today and it wasn't too bad other than having to get stuck 5 times!!! Yep... They finally got it in on the underside of my wrist. If that vein had of blown they were going to the leg!

    The radiation onc said I would probably have 33 rads but wanted to see me again after ther mri results and my meeting with the surgeon.

    Last week I spoke to my onc (my appt was actually on the 2nd and not the 8th) and he said for sure chemo and would wait until MRI results come back and talk to surgeon before deciding on how many rounds etc.  I asked him what kind of chemo and he replied we can't use the ones you were on before.  I said I understand that but what kind???? He acted so surprised that I was insistent on the name so he sat down and explained about my her2+ status blah blah and finally said TCH and I asked how many rounds 4 or 6??? He just looked at me again soooo surprised and he said probably 6 but we'll see and before I could ask he said and you'll get Herceptin afterwards. (I was kinda tickled inside...felt so empowered that day lol)

    You guys are right that we need to be our on advocates and ask questions - that's something I didn't do before... so thank you.  He said we could discuss other chemo regimens after the results are back.

    I'm still walking around in a fog but I hope I'll be a little more vocal when I see my surgeon on the 15th especially if he feels I may have to have mastectomy pending results of MRI.

    Thanks again

    Ev

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009

    ejlj, I know.  Between every thing I have read here and on one other thread, it has scared me enough to go back.  I start back up next Tuesday. Frown  But, thanks for your encouragment as that always makes me feel better.  Laughing

    daybyday glad your mri wasnt too bad and glad you made your doc give you answers.  I swear i dont know what these people think sometimes!  Still praying for you!!!

    · Share on FacebookShare on Twitter
  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited January 2009

    Ev,

    I just read this thread. I think that most oncologists are not used to patients challenging or even asking about what kind of treatment they recommend.

    My oncologist and I went back and forth about 4 times after my discovery of mets.

    I did 6 taxoteres, zometa (continuous) and back on Herceptin. Herceptin works best with another agent.

    If you want to PM I would be happy to answer any questions!

    · Share on FacebookShare on Twitter
  • daybyday1
    daybyday1 Member Posts: 22
    edited January 2009

    Well I picked up a copy of my mri results this afternoon:

    Findings: There is a irregular and elnlarged left axillary node measuring 3.3 x 2.4 cm with volume of 11.3 cc. This node is abnormal and has been previously biopsied and represents breast carcinoma. There is a 1.3 x 0.91 cm malignant appearing mass within the left breast upper outer quadrant with volume of 0.8 cc. Adjacent to this lesion there is a smaller 6 x 6 mm enhancing lesion consistent with a satellite malignancy with volume of 0.16 cc. I see no additional left breast lesions. The right breast demonstrates normal findings with no MRI evidence for malignancy.

    Impression: Large malignant left axillary node. 2 left breast lesions adjacent to one another as described above. Both of which appear malignant within the upper outer quadrant.  No additionl left breast lesions noted. BIRADS 6. The right breast, chest wall and axilla demonstrate no MRI evidence for malignancy.

    I feel like I'm dreaming and waiting for someone to wake me up.  I was expecting the mri to confirm the axillary node crap, but I wasnt expecting anything to be found in my breast. Dagggg. I guess the Herceptin really didnt work for me.  I guess I should prepare myself for surgeon recommending mast. Maybe he won't. Maybe I'm hoping he won't.

    This sucks!

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009
    daybyday1, again, I am so sorry you are having this recurring nightmare!!!  I didnt think you could get a recurrence while being treated!  Do you think this cancer is new and actually started forming while on treatment, or was it maybe already there and too small to see before?  That is so scary to find out you can have a recurrence while still being treated!!!!!
    · Share on FacebookShare on Twitter
  • ejlj
    ejlj Member Posts: 211
    edited January 2009

    daybyday1-i am so sorry to hear this from you.  is this considered local reoccurance or metastatic disease?  As hard as it is to let go of your breast, I think at this point you should give it some serious consideration.  i really thought i was going to miss mine more than i actually do!  they can do wonders with cosmetic surgery these days.   I always joke, that i have a 20 y.o. breast (the reconstructed side) and a 40 y.o. breast on the other side!

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009

    daybyday, I know it is difficult to think about anything positive in this whole nightmare, but I agree with ejlj they do wonders with breast reconstruction now.  I LOVE my new boobies.  They look even better than my "before cancer" boobs did!  So I call them "my little ray of sunshine, in a dark, cloudy disease".

    I had implants before cancer and was a C cup and they looked fake--but I didnt care.  My post cancer boobs are a D cup (I wanted bigger) and look real!!!!

    · Share on FacebookShare on Twitter
  • daybyday1
    daybyday1 Member Posts: 22
    edited January 2009

    Hi,

    I met with my surgeon yesterday, and of course he recommended mastectomy and removal of level I&II nodes.  He spoke with my onc who wanted to do chemo first and stated he felt another lumpectomy would not be wise since first treatment failed and it appears this is an aggressive type of cancer and surgery needed to be done first. He also stated he felt that we needed to look at the path report after surgery to be as aggressive as we can to decide just what type of chemo/treatment I should be on.  He wants to delay any type of reconstruction until after rads.

    I'm to the point where I've accepted this and will just take it one day at a time.  My surgery is scheduled for 1/27/09 as I am on Coumadin and have to be off it for at least five days.

    Thanks to everyone for your kindness and encouragement.

    Ev

    · Share on FacebookShare on Twitter
  • bailey34dd
    bailey34dd Member Posts: 11
    edited January 2009

    Moody congratulations on your successful reconstructive surgery.  This is wonderful.  My sister has implants now with IDC, and is thinking bilateral masectomy with implants (if possible).

    I have a forum for cosmetic surgery, and have members who have had breast cancer with reconstruction with implants.  One of our members just finished having a successful areola/nipple reconstruction.  She looks fantastic! 

    I am so glad everything worked out for you.  Did you have chemo plus herceptin?

    Wishing you all the best.

    Also, have you heard of a patient getting Herceptin every week for a year?  Is that considered normal?  Thanks for any answers.

    · Share on FacebookShare on Twitter
  • Sassa
    Sassa Member Posts: 1,588
    edited January 2009

    Bailey, I started out on weekly doses.  My onc planned on me staying on a weekly dose for a year.

    I did the weekly doses for 4 months.  Then because I had a three week vacation planned in August, a two week cruise in October, and a three week trip planned around Thanksgiving, I switched to the once every three week schedule.

    · Share on FacebookShare on Twitter
  • judyserienagy
    judyserienagy Member Posts: 3
    edited January 2009

    Sassa, I can't imagine how you're coping with all this.  KEEP TALKING!!!!   You're very easy to read, and I know that getting it all out is very therapeutic for you.  WTH, you gotta have something positive going on, right?

    I'm just in the process of dealing with a masectomy, no chemo, no radiation, I thought I was done but my HER2 is positive so looks like I need the Herceptin (and I am TERRIFIED of needles!).  I just found all this out yesterday, so I have alot of research to do.  MY MESSAGE TO YOU:  God's dealt you a mess.  You can work on being strong mentally by any means you think of.  But do stay strong - I've lived my whole life looking on the bright side and it's getting more difficult (!) but I just keep truckin'.  Talk to your friends, your family, all of us online, keep enjoying the good parts of life and put the bad parts into a box under your bed, only to drag them out when you need to take care of them.  I plan on spending alot of time on this Forum, so I will be watching to see how you do.  ALL THE BEST, Judy.

    · Share on FacebookShare on Twitter
  • celpease
    celpease Member Posts: 3
    edited January 2009

    Hi

    I am new to this message board & want to say God Bless all of you. I am just curious to know how and when does the onc know if the herceptin works?  I was diagnosed in july 2008 had bilateral mast in aug stage II  1/27 lymph positive her 2 post er/pr neg. I did four rounds of a/c and 12 of abraxene / herceptin & will be on that until nov.  Any support is greatly appreciated. Does anyone know of any long term her2 positive survivors? 

    · Share on FacebookShare on Twitter
  • ejlj
    ejlj Member Posts: 211
    edited January 2009

    welcome CELPEASE,  I'm not sure that there is an exact science to finding out if the herceptin is working.  My guess would be that it's just if you remain tumor free which your oncologist will order scans and bloood work for.  There are a lot of her2 neuer survivors here.  It's very encouraging!  Tina

    · Share on FacebookShare on Twitter
  • celpease
    celpease Member Posts: 3
    edited January 2009

    Thanks Ejlj that was a quick response. I am still new to all this and still nervous. The only thing I know is that 2 weeks ago they ran a tumor marker test and it was normal. I have 2 more abraxene left then on to radiation.  Then reconstructive surgery and herceptin will continue until november I just guess I still scared.

    · Share on FacebookShare on Twitter

Categories