TRIPLE POSITIVE GROUP

Anonymous

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.

Bird-of-light

hi Fluffqueen, I can relate to conducting hours and hours of research. I am starting to drowned under the stress. I spend hours reading studies and creating questions lists for my docs. The research is exhausting but how I process information. I want to be part of the process and discussion with my docs too. My husband bought a juicer and we have been juicing twice a day - all green stuff. I've grown to love it. The plan is to get me good and healthy for chemo. Did you eat raw vegis through chemo? - Bird

Anonymous

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

Bird-of-light

Would someone explain the significance of FISH

SusanBP

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!!!!!

lago

Bird-of-light the FISH test is one of several used to see if you are HER2+ (see if you have too many HER2 receptors). See details here: http://www.breastcancer.org/symptoms/diagnosis/her...

KateB79

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. . . .

Bird-of-light

SusanB- thanks for sharing your experience. It does sound like you are in good hands. I can't imagine that many biopsies, but thank goodness your doc is so thorough. I am going to watch the Ted Talk and buy the book. I have changed my diet drastically too. I cut out sugar, dairy, gluten, caffeine, and alcohol. I also purchase organic foods.

I see the BS today. She wants my decision of BMX vs LPX. This seems like the hardest decision I have had to make in my life. Yes, I know survival rates are the same with either option. However, reoccurrence rate is a higher with LPX. I shouldn't need radiation with BMX, and I am a good candidate for nipple and skin sparing BMX. I also have very dense breasts. I'm torn.

Bird-of-light

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

lago

Then Bird-of-light you are in the right thread

Heathet

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.

SpecialK

fluff - yes, had surgery on Tues., exchanged left TE for 445g Inspira implant, swapped right 650cc Mentor implant for 415g Inspira, so quite a downsize. Removed the right nipple, but after texting my MO, my PS did not remove my port and indicated that the MO still wants the MRI now that the expander is out. PS did biopsies but she felt that what she was seeing was scar tissue balled up around allograft material. Should find out more on Mon. Also had a boatload of FG and that is mostly what hurts at the moment

Heathet

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.

geewhiz

I am late here, but Fluff... I had mastitis too in my cancer breast. And I used a pump, and I remember a teeny bit of blood and that part of my breast being red and hot. I always knew it was the exact spot. They can say what they want..

Jerseygirl927

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

SpecialK

Jersey - I'm good, no worries - I was answering fluff's question from the previous page. What is up with the seroma situation

Tresjoli2

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.

palypi84

Greetings everyone!!!!

Well I had my last chemo on April 11th. Had my lumpectomy..was told that the margins were clear and that they got the cancer out..so I went home skipping to a new beat..last week I was told that they retested for HER2..when I was diagnosed I was HER2 negative now I'm HER2 positive..so they are putting me Herceptin for a year..my oncologist and breast surgeon says it's a good thing that the test came back positive..I'm so nervous because I don't know what to think..My anxiety level is on 10..when they told the margins were clear I was happy that all I had left was a few rounds of radiation and the hormone pill..now they've added Herceptin..I'm just all over the place..both doctors state that it's good that the test came back positive because it's another weapon to help with me not having recurrence.

FB1983

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

+ 1 year of herceptin and 1 month of radiations planned

Heathet

FB1983- my MO did not recommend perjeta for me because my treatment is post surgery. She said that the studies report perjeta and Herceptin work great as a neo-adjuvant therapy but might increase my risk of toxicity for adjuvant therapy.

SpecialK

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.

FB1983

Heathet and specialk, thanks for your reply! I guess the size of my tumor, the fact it has been removed already and no nodes were involved does explain that.. Still it is a bit confusing to see different treatment plan for more a less similar cases! Just hope to get the best treatment I can

SpecialK

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

SpecialK

Back from post-op, biopsies negative for cancer - relieved! Allergic to the "hypoallergenic" dressings so am now on Rx antihistamine, but otherwise things look good

Pdrchick

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!

PatinMN

SpecialK - great news! I sure hope for you that you are finished with surgeries!

BarredOwl

SpecialK:

I am relieved too! Thanks for the great news.

BarredOwl

ElaineTherese

Special K!

Awesome news! Don't tell me they'll have to schedule another port removal operation for you.....

fightergirl711

So happy for you SpecialK! Terrific news!

Nolagirl1126

wonderful news Special K! I bet it's a relief to get some "negative" news that's actually positive, lol!

I have a question about the Mammaprint. My Sister was diagnosed 3 months after me. She had a stereotactic biopsy with 2 samples. Both samples came back DCIS. She chose to do a BMX with immediate DIEP flap reconstruction. The pathology came back from the BMX and showed IDC of 1.1cm. BS told her they were ordering Mammaprint to aid in "next steps" discussion. But they didn't discuss HER2 test or FISH or anything that I am used to. Does the Mammaprint test for HER2?