Stage 1 to stage 4 while on herceptin?

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moodyk13
moodyk13 Member Posts: 1,180
edited June 2014 in HER2+ (Positive) Breast Cancer

Has anyone ever had cancer metasticize while on Herceptin?  I am Stage 1, had A/C finished apr 28th and have had 9 hercep tx.  I have horrible thoracic and cervical spine pain that has gotten really bad over the past four months.  I think it is the herceptin.  I have a pre-existing spinal disease for about 5 years now but I have never hurt like this for so long.  The onco ran a bone scan in Mar and then again last week.  While I was there the radiologist asked for a hip/pelvic scan.  They came back and said bone degenration had progressed since march, but no signs of cancer.

The lymphnodes in my neck are hard and painful too.  Everything I read says that if nodes are tender, then it is usually and infection some where and will go away in couple weeks.  They have been like this since july/august.

My blood work is always good, but I dont think they measure "tumor markers" on me.

Common since tells me cancer wouldnt go from stage 1 to 4 during treatment, but cant help but be just a bit paranoid. Cause I figure if this is true, he wouldnt have ordered a bone scan.

I want to stop herceptin to see if it goes away, but I dont know what to do. 

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  • orange1
    orange1 Member Posts: 930
    edited November 2008
    • I think you are bi,eng paranoid.  With stage 1b and herceptin, slong with being ER/PR+, your odds of recurrance are pretty low (per subgroup analysis of HERA trail).  Not that I blame you for being paranoid.  I am too.
    Good luck
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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited November 2008

    I think you are right.  I actually believe it is the Herceptin, I go Tuesday and am gonna see what he says.

    Thanks for your input.

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  • Ohbother
    Ohbother Member Posts: 34
    edited November 2008

    Hello Moody

    Did you take Taxol?  i don't know your hx...While on the Taxol and Herceptin, I developed terrible back pain that I am afraid is still w/ me.. And, I finished the Herceptin in Aug. 07... I say this not to make you think you will have pain forever but to tell you that I too had terrible pain and still do...But, the best news is that all of my scans are clear; bone and PET...

    hang in there....

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited November 2008

    Well I went for my Herceptin tx Tuesday, but dr agreed to let me put them on "hold" to see if my pain gets better.  He showed me my two bone scans side by side and I have to say, no wonder I hurt!!!!!  Here are the two written reports:

    This scan was done before I started A/C chemo

    3/3/08 "a small area of abnormal activity is seen in the mid to upper cervical spine on the left laterally.  This is consistent with degenerative change."

    This is the scan I just had

    11/6/08  "additional degenerative changes as noted in previous study of 3/3/08.  In addition there is mild uptake within the kidneys and excretion with in the bladder.  Mild symmetric uptake about the knees, sternoclavicular joints, elbows, wrists, and ankles.  There is also mild uptake about the proximal femora and hips bilaterally and slight prominence of activity at the lessor trochanter regions bilaterally, plain film correlation is recommended.  Conclusion: probable degenerative changes"

    They did the xray, I didnt get a copy of it, but it evidently coinsided with the scan.  SO looks like the A/C chemo had a "field day" with my bones and joints.  And I think the Herceptin was magnifying the pain.

    Saw my pain doctor today and he gave me a pain med that is non-narcotic so hopefully it will work and not be addictive.  He has scheduled me for facet injections in my cervical spine and I am praying that it works.

    ohbother  I did not have Taxol just the adriamycin/cytoxan then started herceptin.  I had 9 herceptin tx's so I'm thinking I had enough beings I was node negative and "no obivious angio-lymphatic invasion seen".

    I had pre-existing condition in my thoracic/cerival area called "thoracic spondylosis"  sooooo i have been in pain for 5 years.  I have never taken medication for it, I manage it with a tens unit.  My doc said I must be hurting since I was WANTING to take medication!

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  • jap
    jap Member Posts: 172
    edited November 2008

    Hi,

    Where can I find the subgroup analysis of the HERA trial?

    Thanks,

    Jo Anne

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited November 2008
    try here:  http://www.oncologystat.com/journals/journal_scans/Estimating_the_Magnitude_of_Trastuzumab_Effects_Within_Patient_Subgroups_in_the_HERA_Trial.html
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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited November 2008
    this one also looks informative:  http://www.breastcancerupdate.com/NSABP_symposium/ppt/leyland-jones/v3/default.html
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  • notlucky
    notlucky Member Posts: 7
    edited November 2008

    Hi everyone,

    I just found this board and I'm glad I did.  I am suffering from information deprivation!  I think my dx will pop up on here.  I'd like to know how many other women with my same diagnosis have been disease free?  I am just starting out with chemo (Taxotere, Carboplatin, Herceptin) and the Dexamethazone is terrible that I have to take prior to chemo.  I get side effects 4-5 days later, like pounding, fast heartbeat, sweaty and clammy.  It lasts for a day or so then I'm fine.  Anyone else get this with the Dex?  Did anything help?  I know I have more than one question here - but hope to hear from someone. I feel I am alone on this journey and I'm scared. 

    Also my surgeon told me I was a Stage 1A, but my oncologist said IIA because of the size of the tumor I suppose.  I had negative lymph nodes, but does that REALLY matter when you have her2 positive?   I also had breast cancer in the right breast but had bilateral mastectomies done ASAP. 

     Thank you for any help, this is a great site

    Notlucky - yeah, that's me.

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  • bluewillow
    bluewillow Member Posts: 779
    edited November 2008

    Hi there everyone!

    Notlucky, I just saw your post here at Moody's thread, because I too am having pains and aches and trying to keep from being paranoid, and that's hard not to be, like Orange said.  I just wanted to say that my doctors and nurses told me that negative lymph nodes are a real great BIGGIE, even if we are HER2+, so don't despair and thank heavens for the herceptin.  I also wanted to say that with the Dex, I had the fast heartbeat too with it (along with being very spacey) and they cut my dosage down just a bit, and that helped me tremendously.

    Ohbother (hey NC neighbor-- I'm in the mountains), you're not alone-- I think the chemo wrecked my bones too, and they were in great shape before I started chemo.  I feel like an old 90 year old woman (instead of an old 52 year old woman).  Of course, carrying around 28 pounds too much is not helping my poor ol' bones any. 

    Good luck to all!

    Mary Jo

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  • TammyLou
    TammyLou Member Posts: 740
    edited November 2008

    Not your same diagnosis, notlucky. 

    Diagnosed Stage 3C in January 2005.

    Cancer regionally advanced.  Fixed matted lymph nodes wrapped around and attached to my chest wall.

    Currently no evidence of disease.

    Tammy Lou

    P.S.  and yes, I have an amazing lots of generalized aches and pains...cancer treatment...the gift that keeps giving

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  • mary6204
    mary6204 Member Posts: 373
    edited November 2008

    Hey Moody, I finished TCH July 9th this year and I was really sick for 5 to9 days with each tx.  Even bad enough to have 3 IV during my sick time.  I feel fabulous now, no ache/pains or anything else for that matter.  I have had 12 Herceptin tx with 5 more to go.  I did get a loud heart pounding with my treatments and I think it still does it occassionally with the Herceptin.  I'm glad Herceptin is part of my treatment as I have heard so many great things about it.  Good luck and God bless, it'll be over before you know it.  Mary

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  • amask
    amask Member Posts: 6
    edited December 2008

    I wonder if Zometa would help- it looks like it may help prevent bone mets as well as stengthening bones...

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  • amask
    amask Member Posts: 6
    edited December 2008

    Not to be a kill joy on the lymph nodes, but I was node negative 9 years ago with extensive high grade DCIS, and now have a metastic recurrence.  I encourage all HER+ gals to do the full tx of Herceptin, regardless of how early the stage is at DX.  It appears that a few cells dripped into the internal mammory chain, which isn't checkes as they are too hard to get to.  Cancer closer to the sternam (which mine was) is more likely to go there and hang out for a long while before running wild.

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  • bluedasher
    bluedasher Member Posts: 1,203
    edited December 2008

    Mary Jo, I'm not sure what kind of pain you are having. Neulasta or Neupogen can cause bone pain particularly in the large leg and hip bones. Also, have you had your thyroid checked? They can do a blood test for Thyroid Stimulating Hormone (TSH) to check if your thyroid is underactive. It isn't connected to having breast cancer, but it occurs for a lot of women at around 50. When I was diagnosed with low thyroid, I had been having a lot of joint achiness and it went away when I started taking thyroid hormone.

    NotLucky, in the chemotherapy forum, there is a thread for people on TCH. Please come join us there. The thread has been going for a long time so it has a mix of those who have finished chemo and those like me who are in the midst of it. Lots of great information there. 

    Stage Ia woud be node negative tumors less than 0.5 cm. A tumor size of 2 to 5 cm and node negative would be stage IIa.

    Lymph node status can make a big difference. I recently found this report from the BCIRG 006 study. BCIRG 006 is the study where TCH was compared to AC-T and AC-TH treatments so it is the basis for the TCH chemo we are getting. If you go to page 16, you can see the data for the lymph node negative people in the study. Disease-free survival at 4 years was 93% for those with node negative BC on TCH. For the whole group in the study (about 2/3 were node positive), Disease-free survival was 82% so us node-negative folks have a much better chance of staying disease-free. 

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  • Brenda_R
    Brenda_R Member Posts: 509
    edited December 2008

    Amask, I agree. I also had a positive IM node that couldn't be removed, although  I was never node negative. My tumor was also located in the sternum area of my breast. Also Her2 positive. I would also encourage all Her2 gals to do Herceptin.

     Also  to the OP. I had a tremendous amount of back, hip and leg pain during Herceptin tx. It faded after treatment ended.

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