TRIPLE POSITIVE GROUP

Even though Perjeta is currently only FDA approved for neoadjuvent use for early stage breast cancer, a number of oncologists have been successful with getting adjuvant Perjeta approval from insurance companies. So, in essence, if you receive Perjeta adjuvently it is off label use according to the FDA, but at the discretion of your insurance provider. I think personal contact between the MO and the insurance company, or peer-to-peer review of individual cases works fairly well in this situation to procure potentially beneficial drug therapy. I am not sure whether Genentech can assist financially if the drug is being used in a way that is not currently FDA-approved though. There are some oncology groups that have patient assistance funds available for this type of use, mine does.

I'm slightly in same boat although I have a little more questions on MRI.

I had Perjeta after surgery, and my insurance company paid for it. Multifocal disease (I also had two spots) got it approved.

To chime in on the discussion about Perjeta, my insurance covered it for 6 months. It wasn't until my last chemo on 3/21 that I found out I would be getting Herceptin and Perjeta instead of just Herceptin. Monday was my first "antibody only" treatment. I think my MO wants me on Perjeta as long as Herceptin, so he might have to recommend my insurance to cover it for 6 more months.

KateB79 - I also have multifocal tumors. I'm wondering if that's why I got approved for 6 months instead of 6 cycles. How long did you take/are you taking the Perjeta?

Francesj19 - Sorry to hear about your issues with Perjeta. Did you see about trying Perjeta with Herceptin after you are done with chemo? It could be the combination of the Perjeta and the chemo drugs that are causing the SEs.

Well said ElaineTherese and Lago! I couldn't have said better myself.

Health23- my DX is close to yours. 3 docs told me no chemo b/c my IDC was only 3mm. I sent one the Taxol/Herceptin article below...and she agreed to give me Taxol.

http://www.breastcancer.org/research-news/20140207...

kate - does the pain coincide with what would be a cycle or is it all the time? Can your pharmacy special order the Teva brand for you? I am on Femara, but also take the Teva brand even though it is not the normal formulary for my local CVS. They order it for me each month - I just have to give them a week's heads up. Not sure how to get around feeling nervous and going to the dark place in the face of discomfort/pain - I am guilty myself. My MO usually just asks me how I am, without being too specific. When I presented with severe onset hip pain in Dec. 2014 he sprang into scanning action though. I find that if it is something new that doesn't go away with a few weeks I start to get nervous, but at this point stuff hurts on me pretty regularly as I have a number of triggers but also have the hip situation and a bunch of lumbar/spinal/thoracic ortho stuff - if I do go off AI drugs at the five year point from starting to take them - which is in a couple of months, it will be interesting to see how much pain is caused by the drugs, and how much is being caused by oldness, lol!

KHinMD, I was right there with you at about a month out. It took a good 6-8 weeks for me to feel better. I had my last chemo on 11/25, so this meant faking it until I made it through the holidays. . . . Anemia takes time; my hemoglobin is still slightly low (but MUCH better than it was in November). The liver enzymes will likely return to normal pretty quickly. Neuropathy is the great unknown, it would seem; I had tingly toes and weird stuff going on with my tongue and lower lip (my MO thought I was insane, but I promise you it was the carbo). I take about 100mg of B6 a day, combined across various supplements, and I think it helps. When I ran out, about a month after chemo, I noticed the neuropathy getting worse, so I stayed on it.

My back feels better today, and the weird cramps seem to have gone away, too. I gotta say: you really put it into perspective for me by making reference to what chemo feels like: even with the cramps/back/hot flashes from hell, I feel a whole lot better than I did in November.

I think the "new normal" might mean "it's one thing after another." But we can all learn to live with that.

SpecialK, the pain comes and goes. I'm pretty pain-tolerant, all told (only took three Norcos total, across two surgeries); it's more of an annoyance than anything else. My MO and I have what I call the "ten-day rule": if something hasn't improved after ten days, I'm to call her. So far, everything has resolved itself within that time frame, which is good news, indeed. My pharmacy seems on-the-fence about special-ordering Teva unless my MO writes the script that way. But I may ask her to do that.

Then again, it might not be the brand: it might be that I've been on tamoxifen for exactly six weeks, and that these are my six-week side effects. Things seem to wax and wane. I'm trying to look at it as an adventure instead of an annoyance.

My RO is the one who said that the psychological toll of coming out of active treatment is high. He's right. I'm doing everything I can do--therapy, yoga, breathing, exercise classes, getting outside when I can (probably not enough there)--but the anxiety just gets me now and again. We just bought a house, too, which may have kicked up the stress a little bit (ha--you think?!). At any rate, I see my RO on Monday for a routine follow-up, so if I still have any weird back pain, I'll let him know.

kate - my DD has a daily med that is only covered by insurance from one maker - all she has them do is write for that brand with the words - no substitutions - on the paper script, and they fill it that way, no problem. It is worth trying this is you found that Teva had fewer SEs. If you went back to it and found that the SE were the same then at least you would know it is from the active ingredient and not the dyes/fillers in the other manufacturer.

my dr took me off A1 cause of some sinsomnia issues, been off since Marc h 16 and the past 8 days I have been running Fever, chills, and fairly strong headache daily. Been to family dr and even to cancer dr. Family wants to wait 10 days for viral? MO took blood today and urine culture, Fever back up to usually 100. 2. Up to 101.9'. Daily evening? Any thoughts?

I had a PET scan which shows a cyst on my right ovary, so pelvic US has been ordered. So follow up in a month with bloodwork beforehand. Is it normal for blood tests to include testing for leukemia and lymphoma?

I agree with lago, Lvbugs. Most routine blood tests don't including tests for those conditions. Maybe your doctors are trying to be extra careful (?). Best wishes to you!

Also new here-Hello Ladies: Question re: SCANS/Possible Mets/Right Treatment Plan ---What is usually done? What may be appropriate in my case? Appt. Wed April 20th Help appreciated--not finding a lot on this topic.

My biopsy was Her2 negative on IHC, but my surgery sample was FISH positive, so now, 4 weeks post surgery, I am headed for chemo of some taxane, and Herceptin, and maybe some other drugs--this was based on a quick late Friday phone call with my MO. Meet with MO next week for full appointment.

Of note is that I am in a large California HMO practice, and they do practice population based, cost-effective medicine--all of which is fine, but already, in my case, advocating for myself (I asked for that FISH test to be done) has proven to be the wise choice.

My main concern is that prior to surgery, for reasons of having GI trouble, I had a CT scan of abdomen that showed on the liver "hypodensities too small to characterize." Research revealed that these are almost always normal, except, in breast cancer patients, 5% of the time they are mets.

I have asked about additional scans for the liver and frankly, I am concerned about the whole body. Do folks usually get whole body scans if they are HER2 positive, but node negative? Would having these liver spots be a reason to do whole body scans? If nothing showed up anywhere else, I would feel better I think. Is it simply costs that stop these scans from being a standard of care in our situations?

My MO says an MRI would not be likely to reveal anything more about the liver spots and we will rescan later and watch, but that a PET wouldn't be given in my situation. So I will have to have reasons, and preferably scholarly research or articles, to show her and back up my request, if indeed, a PET scan would make sense. Again, if my treatment would be the same regardless of what such a scan found, it probably doesn't matter as much.

Advice /Insight welcome! Thank you.

zoziana - what ET said above. I would want the PET because it could show if the liver spots were FDG avid - taking up the glucose tracer because they were active, which random incidentalomas don't do. Other types of imaging will not necessarily show the nature of something, just that it is there - PET is potentially more sensitive because of the way it is administered. Also agree on possibly not needing a potentially stronger chemo regimen - two schools of thought for those with mets- knock out known cancer with chemo and remain NED, or go slowly with most tolerable, but effective, treatment and hold stronger stuff in reserve for later. Some of this is dependent on what, where, and how much. Something small in the liver, combined with Her2+, I would want the chemo and Herceptin now, maybe not Taxol only, but a combo regimen. This is my personal feeling, but make sure your MO justifies all treatment recommendations to you.

Good Morning Ladies!! I've been off the boards for a while and hope everyone is doing well. It's the time of the year where my kids are crazy busy with after school activities, dance and clubs that I am in my van more than I am out....lol, but I don't mind Anyway, I'm in search of some answers - I've been taking Tamoxifen since February 1st and in the last 3 weeks (approximately) I've been having charlie horse leg cramps during the night and my right hip feels like I banged it. I work out with a trainer 2 times a week so I thought I could just be sore from the exercises, however I spoke with a friend also on Tamoxifen and she has had similar issues.

Has anyone experienced this? What have you done to minimize the side effects?

This morning I have my herceptin treatment and will be meeting with my MO, which I will share this info with him!

Wishing everyone an exceptional day!!!

Zoziana, as far as scans you are being handled pretty standard. I had surgery first and since there was time, and my breast surgeon thought I would be a stage IIIA due to the size of my tumor he order scans. My liver had 3 spots. They thought cysts but continued to scan, I think it was 1 year or 6 months after chemo, 1 year, then 6 months till they were convinced just cysts. But I didn't have any of the other scans other than breast MRI before surgery and chest xray.

although we have a fast growing cancer it doesn't grow that fast. If you just had a scan done there will be little to no change. So I would ask "when should I schedule my next scan of my liver" and see what they say. Just remember that mets are found by patient having symptoms many times and finding it any earlier doesn't change survival stats. Too much radiation from scans isn't good for you either.

You are getting strong chemo. They don't mess around with HER2+. Early stage they treat to hopefully cure. They aren't saving the big guns. As far as biopsy being negative for HER2+, yeah that can happen because only 1 part of your tumor may be HER2+ and they didn't get that part in biopsy. That's why they test again after surgery.

BTW I ended up with no node involvement so ended up stage IIB, to everyone's surprise except mine. I never had a whole body scan. Just bone scan and abdomen CT and maybe the first time they did lungs but I don't remember. No brain scan.

My tumor was 5.5cm IDC+ 1cm DCIS. MRI found LCIS in other breast. I had very dense breasts