TRIPLE POSITIVE GROUP

My onc toes the ca 27-29, but it is mainly to humor me. He said they get the results but if they are too high, it doesn't really tell them what to do, opens a whole can of worms that may be a total false. For me, it somehow gives me a little reassurance. However, the count has never been below 20, and as high as 29. Last month was 24.

I figure if it does go above 40, it will get some other testing done to at least show if something exists, or put them on high alert.

Special k did you have your surgery? How did it go?

Gosh...so much here!

FluffqueenO - My oncologist and nurse told me to stay off the internet. Lol. (This forum is an exception). The problem is that most everything you look up is going to be dated. And insane progress has been made with treatment even in the last year. So...I follow their advice.

I am very lucky to be being treated at UCSF. It is one of the top breast centers in the world. And boy are they cutting edge.

Smlowry7- So...this is going to sound a little crazy but my MO ordered 8 additional biopsies when I started with her. I ended up having 10 because two weren't as good as they wanted. My tumor was about 2cm. Not huge. I almost passed out when they told me how many they were going to do. I had my original biopsies done at another large hospital near to where I live. I was ER+, PR+ and HER2-.

On one tiny thread of one of the biopsies, they found a very small amount of HER2+. It was exactly what she was looking for. Because now the direction they are going is that tumors can have two different expressions in them. So I had HER2- and HER2+.

I honestly think she saved my life by taking all the extra steps. The HER2+ wouldn't have been touched by the chemo. It is aggressive but easily curable. So, While the tumor was being treated, the HER2+ would not have been. And it would have been having a party and could have caused horrible problems. So, I am being treated for all three.

Songbird123 - I had 3.5 months between first diagnosis and start of treatment. My cancer was considered non-agressive so I was subject to test after test after test. I used that time to lose 20 lbs (being over-weight is a contributor) and getting myself in the best shape possible. I still workout an hour a day except infusion day. I cut out all sugar and white stuff and made my diet squeaky clean. I started adding in foods that I know make the body unfriendly to cancer. I added in turkey tail mushrooms (look up the ted talk on them) and actually made a list so I would get everything every day. I am also vegan.

A great source for this is "Anti-Cancer, A new way of life" by David Servan-Schreibe. Another great resource is NutritionFacts.Org. Check them out. Hee hee...I see Zoziana beat me to that one.

I am flying through chemo.That does't mean I don't have symptoms. But I haven't had to take any of the meds that they sent me home with. My tumor had reduced by 30% after only 2 treatments. Today was treatment 4 and she couldn't even measure it. One lymph node had completely resolved. I know that it is a combination of what she is doing and what I am doing.

So...go for it!!!

Bird - I eat raw veggies all the time. But I am extremely careful to get organic from trusted sources and clean the hell out of them.

Another note: I did the full DNA testing for BRCA. I have two daughters and wanted to have the most relevant information. It was scary but necessary. Luckily we were negative for all the 70 possible tests done.

My OC also did a mammaprint. It tests your potential for recurrence and then she can taylor my treatment for that, too.

I hope all this helps.

Infusion day 4 today. I am 1/4 done with chemo!!!!!

Just weighing in on tumor markers: my MO doesn't test them, either. She says they throw too many false positives, and she doesn't want to create (more) anxiety in her patients. For the same reason, we early-stage folks don't get PET scans, either.

Her ideology is relatively common, I think: assume NED--especially after BMX, six rounds of TCHP, and chest-wall rads, unless there's a problem. I'm going with that.

On another note, I finished rads two months ago but am having a lot of tightness on that side of my chest. My RO, who is leaving private practice to treat folks at the VA (much to my chagrin, though I'm very happy for those folks), referred me to PT. Fingers crossed that it helps! Maybe the PT person can also help me with the pain in my knees, which I'm certain is caused by the combination of Herceptin and tamoxifen! I'm 37, which by all accounts is "too young" for osteoarthritis. . . .

Thanks for the link Lago. I had the IHC test, which resulted in a 3+.

one step closer to treatment - echo done. One more appt today with the radiologist and I can go home to rest before meeting for s girls night out.

went and bought my wig today - a short bob style. A friend helped me to pick it out. I think I need to take it easy the next few days. My left boob and arm pit feel a little sore and I'm just really tired. Too much running around the last few days. Port on Thursday instead of Tuesday and then I'll know more when I start chemo.

i cannot believe no one has posted i. 5 days, especially since specialk has had surgery and no response. Going for another seroma drain in a week and waiting on script to have the port removed, i want to be done soon. Hugs to all

Jersey do they say what's up with the seroma? Fingers crossed for port removal. I just picked up my special soap...all scheduled for port removal on June 10th.

I start a new job the same week! I am hitting the reboot button on my life. Reducing my commute from three hours round trip each day to 30 minutes round trip. More time with my family and less stress.

Hi everyone,

I have been reading quite a lot of stories and treatments, and it suprised me how many of triple positive sisters do receive perjeta as part of their treatment. My oncologist told me I was not eligible for this treatment, and that it was used for advanced breast cancer only. Would be great if anyone could share you views on this, I just want to make sure I am getting the best treatment even to fight cancer!

Looking forward to have your reactions!

FYI, I am 33, auto-diagnosed with a lump of 1.12cm, ER,PR+ (95 and 80%), grade 3, Ki67:30%, HER+++

tumorectomy: March 10 2016: margins clear, 0/3 nodes

Zoladex: March 24

Chemotherapy: March 31: 4 round of dose dense EC

Chemoteraphy+targeted treatment: May 26: 12 doses of Taxol+ herceptin

FB - currently Perjeta is FDA approved for early stage neoadjuvent treatment of tumors of 2cm or larger, or node positive. There are members here who have received adjuvent treatment, or received it for smaller or node negative tumors, but technically that amounts to off label use that each individual's health insurance would have to approve.

FB - one thing to remember when you look at those of us who have been posting on this thread for a long time - we didn't receive Perjeta because it was not in use yet, and we are still here. It is a great addition to the arsenal for Her2+ patients, but the data regarding which patients to use it for is still being collected

FB1983.  I am post surgery, no lymph nodes affected, grade 3, and my tumor was 4 cms, .    My MO read recently that  Perjeta can now be 'considered' for cases like mine.   My insurance company initially denied it (it's very expensive), but my MO got on the phone with them and got it approved.  The side effects (mainly GI issues) are a little rough, but I"m happy to have it in my arsenal!  Good luck!

SpecialK:

I am relieved too! Thanks for the great news.

BarredOwl

So happy for you SpecialK! Terrific news!