ER-, PR-, Her2+ Roll call
Comments
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I have heard of this study. Paid close attention in 2015 because brain mets was something I feared getting. It is very interesting to see bubbles being used to direct chemo directly to the brain without having to do lumbar puncture or IT delivery through an ommaya reservoir.
There are also promising drugs on the horizon that do penetrate. Tucatinib being one of them I have been paying attention to. Hopefully won't need them but if I do, hope to be able to have them. My cancer center is also one of the bigger centre here too. Many good things for us HER2 people since our drugs have been so successful in keeping a lot of our mets away or at least NED from the neck down. I like that some focus is moving to the brain since that is where our cancer likes to go a lot of the time. Very encouraging studies.
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Thanks so much for all the very helpful replies regarding Herceptin and your side effects experienced. I too will try for an early morning infusion each time with the hope of returning to work afterwards. It's always so encouraging hearing from others who have also walked this road :
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May I ask how Her2+ you need need to be to warrant the use of Herceptin? My biopsy report states 15%. I haven't had surgery yet but assume they will test again then. I'm considered triple negative so I'm almost hoping that percentage goes up so I have some options post treatment. Is anyone else on Herception with a low Her2+ percentage?
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Skiclaire - I had three different tests and only the last one showed 'mildly' HER2+. Since I was ER/PR negative, I'm sure the doc was looking for something to throw at my cancer so he didn't quibble.
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Skiclaire, I'm not sure about measurements, but I was either 2.2 or 2.4 for Her2after doing a third level of testing called amplification or something like that. It measures cell ratios to things like cen17 I think Herceptin was left up to me, and I did it after reading things online saying it has been shown to have effect for low Her2 tumors, and my oncologist also said she would do it if it were up to her because it is such a powerful drug.
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Skiclaire your tissue will be tested using FISH or SISH because it was equivocal on IHC
Testing for HER2
Testing for HER2 may be done by means of either immunohistochemistry (IHC) or fluorescence in situ hybridization (FISH).
The scoring method for HER2 expression on IHC is based on the cell membrane staining pattern and is as follows:
- 3+: Positive HER2 expression - Uniform intense membrane staining of more than 30% of invasive tumor cells.
- 2+: Equivocal for HER2 protein expression - Complete membrane staining that is either nonuniform or weak in intensity but has circumferential distribution in at least 10% of cells.
- 0 or 1+: Negative for HER2 protein expression.
- HER2 test results must be reported as indeterminate if technical issues prevent one or both tests from being interpreted accurately.
FISH has been used to establish HER2 status when IHC yields equivocal results, but it is now also being used alone for this purpose in an increasing number of centers. The interpretation for HER2 FISH testing (HER2-to-CEP17 ratio and gene copy number) is as follows:
- Positive HER2 amplification: FISH ratio higher than 2.2 or HER2 gene copy greater than 6.0.
- Equivocal HER2 amplification: FISH ratio of 1.8-2.2 or HER2 gene copy of 4.0-6.0.
- Negative HER2 amplification: FISH ratio lower than 1.8 or HER2 gene copy less than 4.0.
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I have just finished my last herceptin treatment (had chemo + herceptin for six months Jan to Jun 2016, mastectomy end of Jun, & herceptin every 21 days which just ended last week). My onc put in an order to have my port removed this Wednesday. He said my prognosis was very good and I didn't need to keep the port in. My breast surgeon onc, however, said that if I have a recurrence, it will be within the first two years. So, I'm wondering if I should go ahead with the surgery to remove my port or wait for another year before doing so. I'd be curious to hear from others as to what they have done and what they recommend.
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I still have my port. My onc has mentioned several times about getting it removed as I finished my Herceptin in April 2016. I just want to wait for the very reason you mentioned. Mine is in such a good place that I never even notice it or feel it and it doesn't bother me at all. I have wondered if I would be so lucky with a second port if I took this out too early and then had to go back on chemo or Herceptin. I think I will feel comfortable taking it out after three years. That is my plan anyway.
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I was very glad to keep my port as long as possible. I have truncal & breast LE, so I used the power port for everything - blood draws, contract for CT scans & PET/CTs, etc. This way I didn't have to fight about 'sticks' in my arms that might aggravate the LE. Sadly after almost 4 years, it could no longer be flushed due to a flap deep inside. I was really sorry to lose it. I continue to have lots of trouble finding anyone who will draw blood from my foot.
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minus...the dd and i have a tough time with blood tests too. As soon as they THINK they can find a vessel, it usually twists... and collapses...seems like drinking lots of water and using a pediatric needle helps...sometimes..
I also interview the person who is tasked with sticking me...i give them due warning....and then, either they attempt to do it....or they call in reinforcements..
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Gentlebird,
Your prognosis is excellent. Check out this study of very early stage her2 positive patients. The 3-year rate of survival free from invasive disease was 98.7%!!!
http://www.nejm.org/doi/full/10.1056/NEJMoa1406281
If I were you, I would take that port out and don't look back!
All the best and congrats on finishing treatment.
Stephanie
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I've been agonizing over the same decision! When I asked my oncologist in December about port removal, he said I was in the "50/50" group - low risk because of negative lymph nodes & size of tumor but high risk because of HER2+ and Grade 3. I'd thought all along that I would have it removed ASAP after finishing Herceptin - which I did on Jan. 30 - but now I'm waffling after reading about the difficulty of having another port installed if ever needed. They've also had lots of trouble drawing blood and starting IVs in my right arm this past year (since my left is supposedly forever out of commission for that purpose) so that worries me if I had a recurrence and couldn't get another port. I'd love to hear more thoughts on the pros/cons of each choice!
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I did not hang on to my port because I was afraid of a recurrence. If that happens, I can get a new one.
I hung onto my port so that I wouldn't need needle sticks in my arms for the blood work that the MO requires every 6 months, and the occasional CT scans w/contrast.
Lymphadema is a real ugly issue and i sure don't want mine to progress because I didn't take appropriate precautions against blood draws and blood pressure cuffs.
You wouldn't believe the frustration & gymnastics involved to find someone to give everyday shots like the flu in my belly or butt instead of my arms.
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I had mine removed the week after my last Herceptin. My oncologist told me I could have another one put in if needed. The facility I used for scans and blood draws would not use the port.
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I can't tell you enough how much I appreciate your comments Bootscootin, MinusTwo, Voracioiusreader, Stepincanada, Ruddycat & Sewingnut!! Stephanie -- thanks for the research article too. Thanks for your words of encouragement too.
I called my onc breast surgeon today and asked what her thoughts were on the removal. She agreed with my onc and said to have the port removed. As many of you had mentioned too - I can always have another one put in -- although I do understand it wouldn't be in the same place. I can appreciate why some of you have left your port in too. I'm fortunate to still have good veins in my good arm.
So, I'm going to go ahead and have my port removed -- and I'm going to try to not live in fear -- which is much much easier said than done. Hugs to all of you for sharing your port story.
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GentleBIrd - yes it's easier said than done not to think every little twinge or pain is a new cancer. Funny, I actually caught myself thinking last month that a problem could be due to thyroid. Cancer never entered my mind at the beginning. So I refuse to let it sit on my mind now.
Good luck with the port removal and moving on to the 'new normal'.
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I am just reporting in. I had my ten year after finishing chemo follow up visit yesterday and I am doing well.
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That's fantastic Sassa! Thank you so much for coming back to post.
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that is awesome Sassa!
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that so wonderful to hear x
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This was the topic I went to everyday when I was going through treatment and after and it helped me so much to know other women were going through the same type of Breast Cancer and reading of survivors helped me stay strong...as the days and now years have gone by I have finally been able to not read and have Breast Cancer on my mind everyday. I will be 8 years from my original diagnosis (October 2009). I was Her 2 +++ , ER-/PR-...I remember ready about this type and I was so scared . But Herceptin I feel kicked butt on those HER 2 cells !!
I did have my port removed shortly after my last Herceptin treatment .
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Cathy thank you for posting --I read survivor stories every day as I go through treatment --it really gives me so much strength and hope to read the stories --thank you so much for coming back and posting --i too was so scared when I read about this type of disease, but the doctors have so much faith in herceptin . I hope and aim to do the same thing and come back to post the way you are doing ! Thank you for posting !
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Cathy, I'm just one year out and like you at the beginning, I'm on this thread all the time. Thanks for coming back to share the good news.
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I'm 2 years out and holding my own. We all LOVE hearing about people down the road from treatment. Thanks
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Hi everyone - I don't visit here often anymore, but I like to come back once a year to add a little hope. Had my four year check up yesterday and no sign of cancer! Wishing everyone here peace and health!
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Here I am
Manorama
HER positive
Mastectomy, 8 chemo,
17 cycle of Hertz(Herceptin )
One year survivor
Happy to join herr
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Manorama -glad to see that you are at one year out --and many many more good years to come!! Thank you for posting
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Final Herceptin last week! Yay! I was pleased to see the conversation about port removal here, and I do intend to have it removed soon. A huge thank you to all who contributed to that discussion!
But do you mind if I whine a little now? See, I had a broken hand in Nov 2015 (as the passenger in a car my brother was driving way too fast in the rain). Then in Dec 2015, my Primary Care doc called to make an appointment to go over the results of my mammogram; she didn't call to tell me the results, but to make an appointment. We all know what that means.
Since there were no appointments available until Jan 2016, my holidays were a blur of obsessing behind closed doors while I put on my happy face for friends and family.
Chemo started before the hand cast was removed. By Mar 2016, bills started pouring in because our insurance inexplicably refused to renew our policy. I was exhausted (and I mean Doxorubicin/Cytoxan-exhausted!), my hair was falling out in disturbingly huge clumps, and now I was dealing with the likelihood of losing our home and home-based income.
Luckily (?) this was such a common occurrence that I received coverage under a special ACA provision. In other words, SO MANY cancer patients were being dropped in the middle of treatment, unable to buy a new policy at any price, that the president needed to step in and literally save our lives.
So I survived AC-THP, a double mastectomy with reconstruction and PT... and would now, today, *finally* be losing the headaches and muscle aches and lethargy... were it not for the osteoarthritis, bursitis and tendonitis which have developed in my left shoulder. Wahoo!!
I feel like such an idiot to complain about it at all: It's not a metastasis!! It's not lymphedema!! It's "just" inflammation! But I'm jolted awake in pain a few times every night, and the orthopedist can't see me until mid-April: a full two months after the MRI revealed what had been causing my painful frozen shoulder since before Thanksgiving.
But it could be SO MUCH worse!! But it hurts so badly!! And all I want is to just feel "normal" again!! I don't even remember what it felt like to be pain free and well rested anymore!
Ok, I'm done now. Sorry for whining. I know some of you have it way worse! I just couldn't think of any other place where anyone else might have the slightest idea what I'm going through. ❤
Lunch is over now. Time to put my happy face back on. Time to pretend the shoulder is "just stiff" and not killing me. Thanks for being there!!
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elise - so sorry to hear about your continuing pain. Can you call the ortho and get put on a list to take a cancellation? That might get you in earlier. Or can you get one of your other docs to order PT for your shoulder? I just went through 6 months of that after a broken arm healed with immobilization, but left my shoulder frozen. The PT really helped, but I don't think it will ever be back where it was.
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Thank you MinusTwo. I am on the ortho's "please, oh please, sooner!" list... and the last PT session left me with a list of exercises to do at home until my ortho can order a few more sessions. We bought an inexpensive over-the-door pulley system; that seems to help a lot! Along with a loose pendulum motion (swinging my bad arm as I lean on the edge of the sink with my good arm). I should survive a couple more weeks... ☺
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