TRIPLE POSITIVE GROUP
Comments
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lee - glad you found a MO that you like and trust - it is very important. Also, FWIW, many of the studies involving ALND and/or rads to the axilla are not limited to Her2+ patients. I honestly think this was the reason that my docs were so adamant that I have the ALND. It sounds like your MO is feeling like this is not necessary, so that is good.
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So glad you feel good about your oncologist LeeA. I was told I'd have a port since I was HER2+++ they knew I'd be recieving treatments for a year at least, I'm really glad that I had it. I can't imagine that many IV's in a year. However, I know another woman who did NOT want a port, it was psychological for her, for her port = permanent. She did make it through with out one, but she did say , she couldn't have done more than a couple more. I'm not trying to push the port, but I can tell you, it was a life saver for me. My friend only had 6 treatments but had a port, and is keeping it, even though no mets. She's a hard draw, and hard to place an IV, so she gets all of her blood draws through it also. I didn't, but that was ok. My 2 cents on ports!
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LeeA I am so glad that you were able to get into that MO, that you like him and are comfortable with him "taking over"! I could hear your sigh of relief
And that is awesome that he doesn't think you need more surgery.0 -
Hello,
Just got back to this site and read all the postings and thought I would give you an up date. I am the unlucky gril who had residual cancer in my axila.
I did have one node positive and my tumor was 1.6 cm
My case was presented to the breast cancer conference by my oncologist. I was told that chemotherapy was suggested, radiations are a question mark as I already had 25 sessions on my axila after the initial diagnoses. However the ROsuggested very localized radiation to that specific area and not my entire axila. The OS explained to me that one margin was not clean very interesting as usually pathologists do not analyze the margins on lymph nodes. I had extra-capsular extension. So I was told that if radiations are not an option I will have one more surgery post chemo to clean up the area a bit more. The size of the residual cancer node was 1.cm
My feeling was that if radiations did not work the first time I am not going to have anymore radiations and I will have one more surgery..
I had a second opinion as well from a friend who is a breast Oncologist and he treated my mother in law 17 years ago (she is doing great sage 111 at the diagnoses) and he suggested no more radiation chemo yes + surgery
At this point we did not have all bio markers results we only had the Er+ and Pr+. I started my chemo with TC + Herceptin and last week 3 days after my chemo the HER2 test came back NEGATIVE. So this is very interesting. Herceptin worked the first time
))) unfortunately Tamoxifen probably did not.I am 38 years old now I was diagnosed at 35.10 months and my period resumed post neoadjuvant chemo.
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Just to avoid confusion I had one node positive and my tumor was 1.6 cm when I was diagnosed the first time 2.5 years ago.
This time was just one node of 1cm. PET clear (just that node+ 1 cm) CT clear tumor markers CLEAR
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dimidani - I so hope that things work out for and so sorry that you are dealing with what we all fear - sending strength to you!
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Thank you specialK I am sure things will work out for all of us
)Question for you. How did your hair grew back after Taxotere? My hair just started to fall today and I am very worried that it is not going to grow back the same as before.
Thanks
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dimidani - I was a member of the thread Feb 2011 gals and there were three of us on TCH that started the same week. The other two (we called ouselves the triplets) both had even and rapid regrowth much sooner than I did, but mine finally came back and I went without a wig after about 4 months. My hair came back all gray (my new "real" color!) and my hairdresser would not color it until it was about an inch long. After a while she highlighted it again and it is back to blonde. It is basically the same texture as before, and not curly. I have cut it a lot but it is now almost touching my shoulders at about 18 months since the last chemo. It is a little thinner than before but that may be due to Arimidex also.
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dimidani thank you for your post...i am sure you will get the right treatment plan from your team. It is interesting that the reccurance is her2- since you had a complete response the first time (so in theory herceptin worked). This beast is truly unpredictable and im so sorry you are dealing with this crap again.
many of us had taxotere, my hair grew back, actually thicker than before BC -
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dimidani wow that sucks. To bad about the Tamoxifen not working as it should. I have read that it doesn't always work for us triple +. Just to let you know my hair is like it was before. Thick and shiny. I don't wear it longer like before chemo. Just loving the ease of short hair. I would say it took about 18 months for my hair to get back to it's old self. I didn't go poodle but it did have some weird wave for a while. Here's my hair transition linky.
It starts from the right 1 week before BMX.
I cut it short 5 days after my first chemo.
Next picture is 4 days after my hair started to fall out
next is 2 weeks after my 4th tx in a wig that's too big
1 month PFC in a scarf
All other photos is hair growthYou kicked it once, you can do it again. What chemo did you do the first time?
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Just read about 18 pages to catch up! Sheesh.
Powermom...I'm way late, but had to chuckle at your daughter's pill organization. You would have been feeling some kind of fine if you had popped that combo!
On hair...I am 17 months out of chemo. Mine is still thicker on the back and sides. To is pretty much the same as original. The texture of it is different though. Seems less fine. I still have a little wave left.
I may be nosing around the natural girl thread for info. I had my annual pcp appointment today. Had a bone density test also. While it is in the normal range, it has dropped since two years ago at my last test. He wants me to start taking altelvia. I don't want to. So, I want to see if I can find something that can help build some density while it is still in the normal range. So much for Tamoxifen helping bones.
He is also sending me to an ent for an ultrasound of my thyroid and under my chin. I have a spot on the left that has felt weird for awhile and now hurts when I swallow. Gonna check it out. Of course, you know me, I am googling throat cancer. I don't really have the thyroid cancer symptoms....already checked that.
Now, I am waiting to get my cholesterol results....that will probably be the next drug they want me to take. I'm tired of pills. They need to start making pills in gummy form, as Special K likes. Then I would be ok.0 -
Hello, ladies. Although I don't post much here, I do read your posts often and want to wish each and every one of you a very Happy and healthy Thanksgiving! I am very grateful for all the knowledge and encouragement shared here. (((Hugs)))
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Lago your hair looks beautiful. Thank you for the pictures and your words of encouragment thank you all for letting me know about your hair . I am feeling much better now.
To answer your question my first treatment was DD AC-Taxol and Herceptin for one year.
Bilateral mast. with reconstruction and External rads.
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Dimidani....I hope your treatments go smoothly. It sounds like your doctors are on top of things.
Did you all know there is a blood test for blood lots? During my appt today, I mentioned that I had a tender spot on my calf that I thought was muscular but who knows. My pops wife had an asymptomatic clot a year ago and almost died, so he added the test to my bloodworkup. He said it it comes back low, it pretty much guarantees you don't have a lot. Said h has been doing a lot of research on it.0 -
There's one thing I forgot to relay from my oncologist visit - my mind is all over the place today - but it's probably one of the best parts as it is something all of us like to hear.
At one point during today's visit the oncologist brought a woman into the examining room and said "here, I have a gift for you, Lee..."
So, this lovely woman with a long blonde ponytail and a British accent sat down next to me on the examining sofa (he has examining sofas) and she said "I also did the chemo and the herceptin and everything is just fine for me, in fact I'm better than I've ever been and I'm five years out."
She sat and talked with us for a few minutes (the doctor had left the room) and she said she had lost all her hair but there it was, all grown back and way past her shoulders (even in a ponytail) and she praised the herceptin (like so many have here) and then she gave me a hug (and vice versa) and she went back to her examining room.
I know we all like survivor stories so I wanted to make sure I shared...
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dimidani - I'm so sorry you're going through all this again...
I met someone today who is working her way through the tail-end of a recurrence as well. The first time she was stage III but she's stage I this time around.
I hope that someday we'll see fewer pink spatulas/pink specialty bras in October and MORE MONEY going toward a cure/vaccine/etc.
One of the most frustrating stories I recently read was about a couple of researchers in the Northwest who have really gone far with a substance that induces apoptosis in breast cancer cells and has also been touted as a cure for malaria. From what I understand, the funding just isn't there for more research into this substance.
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Chachamom, happy Thanksgiving to you as well (and to everyone else here on the Triple + thread and elsewhere on boards).
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Dimidani - the oncologist mentioned a trial today for women who don't test positive for Her2.
He said he wants to retest all my slides (?) and if, by chance, I come back as Her2-, I could possibly get into this study.
I just thought I'd throw that out there in case you hadn't heard about it. It was news to me but it might be common knowledge because I'm pretty new to all this.
I thought because I showed as being Her2+++ at biopsy I was strongly Her2+. I'm really confused about this and plan on trying to look up more information to find out exactly what this means. If I understood him correctly, Her2++ is actually stronger than Her2+++? My husband heard the same thing (it's been so good to have someone else in the room during first appointments). Anyway, if I can find out more about it I'll be sure to post it here.
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I'm really littering up the board here, folks - sorry about that...
rozem: "many of us had taxotere, my hair grew back, actually thicker than before BC" - this is good news. I would love to have thicker hair.
Also, re: this - "All i kept screaming in my head was "please stop disturbing the giant" and i kept picturing all these cells scattering like dandelions"
YES! This really resonated with me so much that I relayed it to my husband at dinner.
I was so freaked out at the entire biopsy process and your wording of "disturbing the giant" was perfect. I emailed a friend before my biopsy (I had hesitated to tell her I was going to have it) and said "today I enter the machine" because the biopsy day was the day when I felt like, whatever it was, it would be forever compromised. I think I had previously read some posts here about the subject and I recall one woman saying she saw the biopsy needle burst something open... gack!
Bren58 - Yes, it was a big sigh of relief. When I would ask him a question he would say "we've already taken care of it." I emailed with an associate of his who says he closely manages everything and that's just what I need right now. I like the idea of the MO being the point man at this point (which sounds redundant but you get the picture).
Have you gotten your slides from 2000 back yet?
LindaKR - I was surprised he brought that up about the port. I hadn't asked about it yet but it was on my list of questions that I went through with him at the end of the appointment. I really don't care one way or the other but I have definitely noted that many of the people on this thread have preferred having one. The other woman I met with today (one of his patients that I had met via the board) does have a port. She showed me hers and I never would have thought it was anything other than, well, skin. It really didn't look like I expected it to look.
SpecialK - re: the ALND and HER2+, I am really torn on this. I keep thinking about your 6mm surprise further on up the axillary line. My nodes showed clear on ultrasound as well as MRI (like yours did). Being OCD - it could very well drive me nuts thinking about the what ifs...on the other hand, I want to make sure I get started with chemo asap because I was so negligent in getting this tumor biopsied...I'm emailing the path report to the breast surgeon who got me into see the oncologist. Her initial feelings on it are to go with the chemo and no ALND but she wants to review the report. I know my BS will want me to have the ALND. Too bad these lymph nodes are so darned elusive on MRI.
soltantio - re: the 2.5 hour Brentwood/Downtown thing - it was raining that day so I don't know if that was it or if it was a case of there being a Lakers game (which would explain that much traffic going toward downtown versus away from downtown at that hour). Whatever it was, it was a mess and it isn't the first time. My husband's eye surgeon used to be in Santa Monica and we would get into some awful traffic jams between Santa Monica and downtown.
I've never gone hiking in Griffith Park (although it's not that far away) but if you ever go - be careful of the coyotes! My son and his friends went while he was out here and he liked it. Also, if you ever want to go on a great hike you might consider Eaton Canyon. I think they allow dogs back there as well. It's a beautiful hike/walk back to an enormous waterfall. My son loved going back there. Also, Mt. Lowe is fun as well but it's so damned steep. The elevation change is really significant given the distance but the view when you get up there is unbelievable. All the way to Catalina. At one time there was an old hotel up there and people from all over would take an old cable car to get up there. There are still remants of the old cable system and you can tell where the hotel used to be. Here's a link to a website about the way it used to be - way back in the day... http://aaaim.com/echo/v2n2/AlpineTavern.htm
Re: my ultrasound/us comparison - if you'd like me to post a link to it or PM it to you - I will be happy to do so. I know you're curious about it and it is kind of interesting to see how the two line up. The hospital that did my mammogram/ultrasound put all my films on disk (my previous films came out of a facility in Torrance). So, I had 2000, 2003 and 2012 images to compare. It seems all of this is transferred around via disk these days so it could be that all you would have to do is ask for the disk from your facility...
Re: Griffith Park - I'm thinking that there might be one of those Oakwood temporary places close to Griffith Park. I think I've seen one near Forest Lawn which is on the other side of Griffith Park. I'll look it up.
ETA: Yes, there's an Oakwood in Toluca Hills which looks to be very close to Griffith Park0 -
lee - here is the explanation of Her2 testing results using IHC which is the test that uses the number+ resulting. The other testing methods use a positive or negative resulting. This info comes from this website. 3+ is the strongest result you can get.
IHC test (ImmunoHistoChemistry): The ImmunoHistoChemistry test finds out if there is too much HER2 protein in the cancer cells. The results of the IHC test can be: 0 (negative), 1+ (also negative), 2+ (borderline), or 3+ (positive — HER2 protein overexpression).
It's important to know which HER2 status test you had. Generally, only cancers that test IHC 3+, FISH positive, SPoT-Light HER2 CISH positive, or Inform HER2 Dual ISH positive respond to the medicines that target HER2-positive breast cancers. An IHC 2+ test result is called borderline. If you have an IHC 2+ result, ask to have the tissue retested with a more precise HER2 test: the FISH test, SPoT-Light HER2 CISH test, or the Inform HER2 Dual ISH test.
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SpecialK -
I just took a screenshot of that portion of the biopsy page. This is from the biopsy versus the actual tumor.
I hope this doesn't mess up the page width. If it does, I'll edit it out and just make it a link. ETA: Yep, it's messing up the page width. Here's a link to it on imgur.com -
From what I was just reading on another site, the FISH test looks at it cell by cell? This stuff is all so confusing to me.
Editing to add: Here's a link to all the boilerplate language regarding HER2 (from the biopsy results):
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Lee - the important thing is the pathology from the actual tumour - I wouldn't put much store in the biopsy result if I were you.
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dimidani I hear TCH is a bit easier than the Evil Adrymicin. Granted Taxotere has it's own special SE. I highly recommend keeping as active as you can everyday even if it's just walking 15-20 minutes. When I stopped doing that sometime after the 4th tx I really stiffened up. I'm sure you know to drink lots of water. I also sucked on ice chips during taxotere infusion and had no mouth sores and very little taste changes… I ate everything except pepper and nuts that week I had the slight taste changes. They tasted bitter. I'm sure you know about drinking lots of water. If you're really worried about your hair you can look at getting the cold caps but its a real PITA and $$$. BTW you are gorgeous.
Solt I agree that theory sounds wacky. Thought the same when I first read it but then again I'm not oncologist at Sloan.
LeeA I missed the pink spatula. That's almost better than pink duct tape
HER2++ is unequivocal, HER2+++ is definitely positive. Your onc might have just had the wrong words come out. I've done that too.
I had my port for 2+ years. It took several months to get used to it but so glad I had it. I'm still healing from it's removal 2 weeks ago.Rozem biopsies don't cause the tumor to burst or spread throught the body. At the very worst it might spread along the needle track and that's why it is removed at lumpectomy or MX, including the scar.
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So I have to make the appetizers for Thanksgiving this year. Already made the marinated mushrooms. We are bringing some cheese. I tried 2 recipes yesterday. One is sweet potato hummus and the other is baba ganoush. My husband loves the hummas. Just deciding if I should make the baba ganoush too. There will be 14 people. I had to stick to cold stuff because we are 1.5 hours away and I don't know if there will be oven room.
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SusieQ - They didn't repeat my ER, PR, HER2, KI67 after the lumpectomy - only the pathology visual evaluation (grade,...). So the biopsy results are all I received. They took a bunch of samples during the biopsy.
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Omaz they took 5-7 samples at my biopsy. Still tested everything again after surgery. The surgery path is the one that is the most accurate.
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This article about the Neuvax trial and vaccine was in my inbox this morning. It is primarily from an investor's point of view as it appears some news will emerge December in San Antonio . There is , however, alot of interesting info in it . And Lee..the Phase III trial may be what your MO was referring to if your HER2 status is changed.
http://seekingalpha.com/article/1020251-a-fact-based-analysis-of-galena-s-neuvax
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Lago.....don't know what the baby ? Is..........but the sweet potato hummus sounds divine!!! Can you share the recipe?
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Yeah lago - Not sure why they didn't test again. I think my FISH was clearly positive the first time and the immunochemistry was clear as well. Nothing borderline so maybe they called it good. Did you have any differences between the biopsy and the surgical pathology?
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Omaz the only thing that changed was that 1cm of my 6.5cm tumor was DCIS. No DCIS on the biopsy… granted that didn't change my treatment because they base it on the invasive part only.
Chacha baba ganoush is a middle eastern eggplant dish. Below is the hummus recipe
For the recipe I didn't use Tahini but had to add more olive oil because it was too dry:
adapted from: linkySmoky sweet potato hummus
Ingredients:
Makes 4 cups
1 pound sweet potatoes (roughly 2 medium)
1 can chickpeas, drained and rinsed
1 teaspoon chopped chipotle chili, canned in adobo sauce
1 garlic clove chopped
2 tablespoons fresh lime juice
2 tablespoons olive oil (I used a lot more)
course sea salt and freshly ground pepper
Method:
Pre-heat the oven to 350 degrees.
Pierce potatoes several times with a fork; place on a foil lined baking sheet. *Bake for 1 hour or until tender. Cool slightly, then peel and add to the bowl of a food processor. Add chickpeas, lime juice, olive oil, chipotle and garlic. Puree until smooth and thin with up to 2 tablespoons of water if necessary. Add ¼ teaspoon salt and season with pepper. Refrigerate for up to 1 week in an airtight container. Garnish with additional olive oil and smoked paprika before serving.
* I cheated and microwaved the potato with skin on for about 5-7 minutes turning 1/2 through. Be sure to poke holes in it with a knife or fork or it will explode. Peel/remove of skin when done.
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Thanks, Lago!!!
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