TRIPLE POSITIVE GROUP

My MRI missed a positive node (4.5mm) and my areas of DCIS showed on nothing but were in the final pathology.

I'm done!  Finished Herceptin today.

I'm losing a fingernail which my MO says couldn't possibly be from Herceptin. Your thoughts?

Hi Ladies,



I had an MRI last Tuesday and they called me today to say that I have a suspicious 0.8 x 0.6 mass at 9 o'clock anterior depth in the same breast that I just had a Lumpectomy in. I had an ultrasound earlier today (and I saw it) which confirmed I'm on my way to a biopsy. I finished chemo May 9th and radiation early August so I'm really disappointed that this might be cancer, again. I feel like this is not going to end.

Oh Rhonda2, that just sucks. But wait for your results before you assume (yeah right, I know...) I had my first post-diagnosis mamm last month and got called back for ultrasound too (but no biopsy, it was just tricky scar tissue) - waiting is the worst but all you can do is hope for the best. And I don't think it ever ends, sometimes you just get to forget about it for longer periods of time before it all comes back in your face again...

Congrats on your last Herceptin vballmom! I am counting down to mine (6 more pokes!) I am not losing my fingernails but they seem to just shred and tear quite readily.

Pbrain, thanks! I will look for the Curel anti-itch. I was also kind of wondering about more systemic things anyone has tried - my osteopath suggested fish oil to help with some of my digestive dryness but are there other hydrating supplements? Gallons of water?? 

Hutchins, you're the same age as me but I was diagnosed at Stage II. I'm currently on both Herceptin and Tamoxifen until January, then just the Tamox. My sister was diagnosed at age 33 and is now a five-year survivor so have hope.

PatinMN, thanks. If my nails get any worse, I'll look into the rejuvacote. I'm just keeping them really short right now but one of them got a huge tear down the nailbed so I'm just hoping this is not a new trend.

Bren, I hear you on the wig-weariness! Since my chemo was broken up (i.e. delayed by two months right in the middle while I had the baby), I felt like I was never going to get my hair back! My profile pic is from my sister's wedding in August and I was still debating wearing the wig. My peeps were so used to seeing me without it by then though that they convinced me I could still look decent in pictures (I was a bridesmaid so I wanted to look you know, NOT like a cancer-patient for the event). Your hair must be growing more slowly than mine because you are slightly ahead of me on the herceptin but I think I've got at least 2 inches on top. People say short hair suits me at least so I'm just going with it and I donated "Regan" (my wig) to the wigbank last month. 

camillegal, I read your post out loud to my husband today!  (re: it's a dry heat but so is an oven) 

You're so funny!

Just sitting here watching the news, and what should come up, but one of our previous discussions....fecal transplants! I laughed out loud. Doc at the IU Med Center specializes in it, and a woman who had cdif said what a life changer it was for her.



On nails, mine did not get bad until it was about 2/3rds of the way through herceptin. They were so thin and painful. Almost like little baby nails. They really still are not normal.



Hutchins-My tumor was just under 1 cm. 25% of it was LCIS (multifocal) with the rest IDC. Not sure how that actually looked, if it was one or two. My BS kind of drew a picture , but I was numb then and when I look at it now, I can't figure it out.



Rhonda-I am hoping the area is nothing. That does seem a decent size to have just appeared while while you were/are under all the treatments. Sending healing thoughts.

Vbal, congrats. Susan, I was pulled off H because of EF drop too. I had just 2 H only when I had to come off. Hoping that with the chemo it will be enough.

For those whose nails seem to tear easily, look at your bails closely. Are there horizontal lines running across the nails? Those would be Beaus lines and they would correspond to each chemo tx you had. Your nails break off when the line reaches the part of your nail where it is loose on the side.they go away when the chemo is over and the last line reaches that spot. Sometimes its only on one or two fingers. It takes about 6 months for the last line to work its way up to the top of the nail. Infections can add lines too. If the nails are lifting up, it was probably the taxotere at fault. Much love to all.

I'm losing toenails now at 6 weeks pcf when I didn't lose any during chemo. I'm also on Herceptin but my RO says Taxotere is famous for "latent SE's" or side effects well past the finish of chemo. Takes awhile to get that stuff out of your system!

Annie

Did anyone here ever have testing for p53 gene?  Curious, I have seen it out there in the literature and how it relates to breast cancer with HER2.

Girl, p53 is another gene that codes for a tumor suppressor protein.  Whacked out mutant p53 genes account for a lot of cancers including breast, pancreatic and colorectal.  The test looks for antibodies to the mutated protein since our bodies will recognize it as foreign.

It isn't a test that is used in clinical medicine at this point, but it is being used in clinical trials (we have one going on right now).  It is also big in research.  So I suspect most people here haven't had it done.  However, the assumption is if you have breast cancer, you've very likely had cells with a mutation in p53.

And Annie, I lost all my toenails ~5 months pfc.  It was bizarre to spend a summer without sandals and toe nail polish.  And even more bizarre was that it didn't hurt to lose them...weird...

girlstrong my geneticist recommended p53 testing after I tested negative for the BRCA gene (despite my strong family history). She thought I should be tested because of my family history of breast cancer and plus my mom had leukemia. Also, I was told that the p53 gene is linked to some childhood cancers and since I have two young boys, I decided to do the test. It too came back negative.

Pbrain: thanks for your insight on p53

MarisaC: I too tested negative for BRCA but now am going to see a geneticist and will possibly have p53 testing pending my consult. I guess the reason I would like yo know is to help determine if I should have radiation or not. One MO told me that there is an increased risk of secondary cancers in those with the p53 gene who have radiation versus those who don't.

Anyone had mastectomy plus rads?

PS: hope no one minds me chiming in on this "triple positive group", I find myself here a lot because there is a lot of active discussion and great ladies

Rhonda 2 Hoping the best for you. Will be thinking about you on Tuedsya

Rhonda, why didn't you have rads? I am so praying for you right now. Remember over 80% of breast biopsies are negative :-)

It is important to keep in mind that a mutation is the p53 gene is not considered to be inherited like the BRCA gene (in other words, it isn't what we call an inherited mutation, but instead a somatic mutation) p53 genes will mutate over our lifetime due to environmental stressors. So we probably all have a mutated p53 gene in the cells that turned into breast cancer.

Testing for that mutation does not mean your children may have it. It means we smoked, got exposed to carcinogens, ate too much junk food, hung out in a large city with smog, etc. That's why looking for the antibodies to a mutant p53 protein isn't that informative. Where my company is doing the research is looking at it as a cancer screen. It is mutated in so many cancers.

Does that make sense? I can try to explain it better, but please don't think it is a test like BRCA 1 and 2, because it is definitely not. In other words, you have a mutation because of what you have done, where you have been, how you have lived. If your child is living differently, they likely won't get the mutation. This is why it isn't useful in genetic testing for a predisposition to BC or ovarian cancer like BRCA, but why it is a good screen for an existing cancer.

Hi 3+++ Women! I had my 1st treatment in Boston yesterday. A very loooong day. ( it's a four hr dr one way) We were there about 7 hours... mind you, I live far away so when I get there, they have to draw blood and check everything. Had a little trouble accessing veins...I thought I was the picture of calm and composure...however they gave me an Ativan and said relax. I guess my veins were nervous...

I got all three drugs. Abraxane, Perjeta, Herceptin, with an observation period after each. No problems! I drank a ton of water and continue to do so today. Day 1...Im achy, but nothing to note. I hope it continues.... I'm back there next Friday just for the Abraxane.

Im thinking the first time is the most anxiety provoking because you are embarking on the the unknown. I will not be so nervous next Friday. I met such nice people and everyone was so kind.

This was the 1st time they gave this regimen & combination for early bc, so everyone was excited.

Sending out huge hugs and good wishes to all starting and fortitude & strength for those of us that have begun:)

Hi everyone,

Pbrain, I had 33 rounds of rads and TCH x 6. Chemo ended May 9th and rads ended the beginning of August so I was surprised this came about so quickly. I'm praying it will be benign and knowing what you said about 80% being benign helps. This particular mass demonstrates heterogenous enhancement and a rapid washout type curve. I do have bilateral benign cysts in both breasts with background glandular enhancement. I also know there are more weapons they can use if needed and I am comforted by that.

How is your head Pbrain? I hope your feeling better after that fall. I'm also sending everyone well wishes and hoping we will live to see a cure.