TRIPLE POSITIVE GROUP
Comments
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Bird - All I have now is Tamoxifen and a number of drugs to combat the Tamo side effects. My MO would not allow me to cold cap or chew ice or ice down my finger tips. He said "You are not to protect any part of your body from the chemo drugs." Soooo, of course I lost my hair, some of my fingernails, had mouth sores, hand & foot syndrome, bloody nose.....all the usual side effects. It was my labs that convinced the doctors to stop my chemo treatment. Then after 3 more treatments of just Herceptin, my LVEF was down to 35, which is considered heart failure. Guess I'm just a wimp.
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Hi Slapp-
We are in similar situations and time frames. I understand how you feel. It's crazier than cancer usually is. I literally had no time between "diagnosis" of HER2 positive status and the communication that I would be having chemo; it was the same phone conversation. ( personally was grateful for that, as I didn't have to wonder. And, from that call to my start date of chemo is 10 days...Not a lot of time at all to organize personal life, figure out work schedules or time off if you need it and buy or borrow a hat or two, and a wig, for hair loss. I've done it, though, and so can you! We are here to help you any way we can!
I would agree with SpecialK--any cancer that is HER2 positive is a dangerous one. I know we all make our choices, but do make sure you are informed, and if you doubt or just aren't sure about your oncologist's treatment plan, ask to get a second opinion. That's what I am doing--the appt, is tomorrow. I want to be entirely comfortable with whatever I do, because we all know that a positive attitude in the face of challenges such as ours is a very helpful thing indeed. And, as I had lingering doubts about whether I was getting enough chemo, and whether I should get additional targeted therapy or not, I decided getting a second opinion was a good choice for me.
Just booking the second opinion appt. helped me psychologically, and getting it will help me further. Do what you need to do to feel comfortable. For that reasons, I also insisted on a PET scan to further examine some liver abnormalities found on a CT, and I am happy to report that they did not read as cancer, and everywhere else was clear too! That PET finding also helps me feel more comfortable with my treatment plan. I feel all of this is key to my having a positive attitude when I start Friday!
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Blownaway, or maybe that is all you will need. Thanks for sharing.
Bird of Ligh
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SpecialK,
Please share the links to the studies about Taxol and Herceptin. My tumor is >1cm and I will find out if I am node negative after surgery, May 4. My MO gave me two chemo options (not including Taxol+Herceptin) but if I am node negative, I plan to ask for ask about Taxol + Herceptin).
Bird
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Thanks SpecialK: As always, you are a wealth of information. I guess the benefit to the Tamoxifen is that it doesn't (I hear) hurt the heart and actually strengthens the bones versus Arimidex.
I have my 6 month appointment in June so we'll chat about these things. I end my 5 years on Arimidex in September.
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bird - here you go:
http://www.nejm.org/doi/pdf/10.1056/NEJMoa1406281
Here is the BCO summary of the above linked study:
http://www.breastcancer.org/research-news/herceptin-plus-taxol-reduces-recurrence
An ASCO article regarding this data:
http://www.ascopost.com/News/10846
There is also a weekly Taxol thread on BCO I will link, in case you have not seen it. A number of those who have posted there are receiving Taxol and Herceptin for smaller tumors.
https://community.breastcancer.org/forum/69/topics/788735?page=1
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I wanted to see how often and what types of follow up scans you all receive. I had every kind of scan imaginable right after diagnosis. After chemo, I had another PET/CT scan (clear - yay!). I had a mammogram at one year. I see various doctors on my team every 4 months or so at this point. My MO is talking about another PET/CT scan this August, which will be my two-year mark since being diagnosed. Is this common? Am I fortunate that he's suggesting it, or should I be worried about the extra radiation, false positives, etc.?
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Cassie, At diagnosis I had a breast MRI. That was it. Last August I had a bone scan because I kept having problems with my right hip. MO ordered it to give me peace of mind because she didn't feel it was cancer related. We were both hoping it would show a reason for the discomfort. I've finally realized it's exercise related. My MO would order a scan if I was having symptoms of mets but not just to order one. I did have negative nodes so I don't know if that could be part of the reason. Some MOs seem to be scanners where others aren't at all.
**Forgot to add that I did have a mammogram and ultrasound on my left breast last year. Just had my mammo today and everything looked good but they recommended another ultrasound due to really dense breast tissue. I've decided to wait until next year. My daughter spent six days in the hospital last week (4 in the ICU) for pneumonia. I need a break from the medical bills.
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Hi Cassie!
After diagnosis, I had an MRI and PET scan. After chemo, I had an MRI and PET scan. After radiation, I had a PET scan and an MRI of my hip (because of something lighting up on my hip during the PET scan -- didn't show up on the MRI). I've also had mammos every six months since radiation ended. I don't know if I'll get anymore MRIs or PET scans soon, but MO once mumbled something about getting annual MRIs. Yes, PET scans do produce false positives which could lead to further scanning, as was the case with "the thing on my hip."
I'm not sure how much scanning is too much scanning, radiation-wise. I do know that MO won't scan a troubled spot unless that spot's been giving trouble for more than a few weeks. During my last MO appointment, I told her about my sore back and how I thought it was due to sleeping in a funny position. She just said to keep an eye on it. Sure enough, it disappeared in a few days.
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Bird (and Special K) -
If this helps at all, although my tumor was almost 3cm and I am node positive, my MO put me on Taxol+Herceptin+Perjeta after the lumpectomy FIRST before the AC. I'm at Dana-Farber, where many of the docs in that study practice. My diagnosis was brought to their tumor board, and I started the THP right away. Hope that helps you, Bird!
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fighter - interesting protocol, and glad that you could move right to the taxane and targeted therapies after surgery - that makes sense in light of stage/node positive status. Did they suspend the H&P when you went to the AC?
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SpecialK Yes they did. I'm on AC now, round 3 of 4 this Thursday, and my last round scheduled for May 12. Of course they did an echo before I started with the THP, and again before the AC. I also have another 13 rounds of Herceptin planned as well as radiation, but not sure at what point I start. I also have an axillary lymph node dissection and surgery to get better margins planned, I have a follow up with the surgeon this week too to find out more about that. In terms of surgery, they are very much in the "less is more" camp - I have no problem with it.
I asked about the heart risk, but my MO said don't worry about it. I'm 44, was in pretty good shape before chemo. Never had any health problems.
FWIW, Dana-Farber was my second opinion. The more local provider was recommending TCH (no Perjeta, they said it wasn't covered) and the removal of the left breast, keeping the lymph nodes in tact. A totally different protocol. I asked them about the AC and they said it was too risky with Herceptin. I asked them about the lymph nodes too and they also said too much risk for lymphedema. I was pretty shocked when I went to Dana-Farber and their recommendations aligned with all the questions I was asking about at the first place. So I go to Boston. Plus, I love it there, it's a wonderful place, I feel very taken care of. I went in for my second opinion on January 4, and was on chemo by January 7. The experience has been pretty amazing, considering the circumstances.
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fighter - interesting! Glad you went to DF and they were aggressive and that you are feeling confident and well cared for, if I were in your shoes I would have been asking those same questions! I am betting the local provider could have gotten the Perjeta covered adjuvently in light of your nodal status, and they should have. The AC-TH versus TCH is kind of a toss up, but with your young age and nodes it makes sense - there are many others who have done AC-TH (before Perjeta was available for early stagers) on BCO. I had an axillary dissection also, my BS and MO were insistent even though my SNB only had 20 IST - the decision was driven by the Her2+ aspect, and they found a much larger positive node further up. I do have lymphedema but I don't regret the choice to do ALND - it would have been akin to leaving a stage 1 lump in the breast and not removing it and hoping chemo did the job, so I am ok with it.
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SpecialK Exactly the same feeling about getting the ALND - I had 4/4 nodes affected, the odds are there might be more, and I don't want to wonder if chemo took care of it or not. I'd rather have get the nodes removed, get them tested and (possibly) be pleasantly surprised that everything was clear, than have it weigh on my mind.
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Had my 6 month checkup today. My relatively new onc (my beloved one passed away suddenly 18 months ago). Great guy, very smart, but I can't talk him into the same things I could with my other onc.
At any rate, we discussed AI's. He said he just received the June ASCO agenda and there will be a big presentation on a study done on people who took both tamoxifen and an AI in 5 and 10 year combos. It has been going on for 15 years he said and should have good date. He feels if the difference is pretty miniscule, he will recommend 5 years as some of the AI side effects could outweighs the tiny benefit. If it's larger, he will go with 10.
I'll see him in October and will be 3 months past 5 years. Like you Special K, I want to quit, but mentally not sure. I wonder if I tell him I'll stay on it, but take frequent breaks, it would make a difference lol.
Zoziana- on supplements, I took acetyl l-carnitine (can't remember dose), l-glutamine (but not religiously), vitamin d and a b complex, coq 10. I think those were the main things. Onc ok'd everything. He recommended coq 10 for heart protection with herceptin. Don't know that there is any link but couldn't hurt.
On docs...I prepared a separate questionnaire for once, breast specialists, and plastic surgeons. Treated it like an interview. I figured they were working for me. Taped each interview to help me remember. Ultimately, I interviewed 2 breast specialists, 3 oncologists and 1 PS. I cancelled my other 2 PS interviews as I just liked this guy so much. Not sure he is the ultimate best in the city, but we got along great and he did a great job
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Bird- I chose the Taxol/Herceptin route. No oncologist suggested this to me. I did my research, and then brought the idea to the MO that I thought would listen to me the most. Special K- thanks for posting the article above concerning Taxol/Herceptin...this article helped guide my decision process. I will also have BMX and reconstruction in the fall due to my family history. My little sister was diagnosed 3 weeks ago. 5 out of 6 women in my family have been diagnosed...yet we are all Braca 1&2/My Risk negative?!
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TCH (with or without P) is standard of care for HER2+ BC >1cm. I second what others have said: grade 3 HER2+ is nothing to mess with, and I've seen very few regrets from those of us who have busted out the big guns (T&C are big guns).
As for adjuvant endocrine therapy: my MO seems to think 10 years is a given. I'm on tamoxifen now, and will probably go the ovarian suppression route--with tamoxifen, not an AI inhibitor--near the end of the summer.
No scans here. Not a one, unless you count the rads simulation CT.
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Fluffqueen0- Thank you for the supplement info. I already take CoQ10 and thought the same--couldn't hurt. I have ordered L-Glutamine and will pick up some acetyl-l-carnitine too. Ran idea past a consulting onco and she said it was fine, along with the Bs, the D (which I am presecribed anyway), and my alpha lipoic acid. Anything that helps the nerves function, she said, should be fine, but always to check.
NolaGirl112: RE: genetics, I'm in the same boat with family history, though haven't had definitive BRCA testing yet--just tested through 23 and me which tests for only 3 of the hundreds of BRCA mutations, per my doctor, that can cause cancer. I will manage to get this done, though in my managed care system it takes some work and I've been too busy figuring out more immediate health concerns. But once chemo starts Friday that will be my focus. Of interest to you may be what I learned regarding bc genetics yesterday at a second opinion appt. with an exceptionally well regarded research and treating breas oncologist at Stanford. She looked at my family history, and my personal history with some head and neck tumors (non-cancer), ovarian cysts (non-cancer), colon polyps twice (non-cancer), and my very healthful, fitness oriented lifelong lifestyle, and she thinks there is something genetic in all liklihood and probably BRCA, but she said there are a number of other genes, too. Later, when I learn them ,I will post somewhere (there is prob. a forun for that here somewhere but I haven't looked.) As my husband is BRCA, we will be delving into this in detail, because of his own risk for prostate, breast, and melanoma from BRCA, and because I have a 22 year old daughter and son.... PM me if you like and perhaps I can share more later.
KateB79: So what I learned from a second opinion consult with the Stanford research/treatment breast cancer onco was that based on the most recent data (the Dana Farber study and another study that was done in California), the newest standard of care for HER2+, node-negative women with tumors less than 3 cm, is the Taxol-Herceptin combination; it was shown to be highly, highly effective--over 97% cancer free survival,with no recurrence ,in the 4 year follow up period. She said the risk of recurrence with HER2+ cancer is highest in the first 3 years, and that thus she had a great degree of confidence in my proceeding with this TH treatment plan.
She also said that the sooner you treat with Herceptin and chemo, the better for HER2+, but so long as you treat within 60 days of sort of your "first" biopsy result (as mine was negative that first time, but that is the date they use for studies--not my recent, later retest with FISH that was positive), studies show a good outcome. So I am starting treatment on the last possible date for being in that 60 days. I was supposed to start yesterday, but really wanted that second opinion, so I start Friday. My confidence in what I am doing is worth a wait of 3 extra days....and she was fine with that, but not waiting longer. So that is what I am doing. I realize there is no certainty in cancer, and everyone must make her own choices here, but thought I would share that information.
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Hi Everyone, I appreciate the responses in regard to my first post. Thanks SpecialK for the info! My 4 hour appt. with Onco/Rad was very insightful yesterday. I feel much better about proceeding with a treatment plan. Treatment plan Taxol 12 weeks, Herceptin 1 year, Tamoxifin 5 years. Or, I have been offered a Phase 11 Clinical Trial-the name of the trial is the 'ATEMPT trial'. The trial is a random 3-1, and the drug is T-DM1 therapy for one full year vs. standard therapy (above). This drug has been successfully used in metastatic HER2 positive women. Side effects are supposed to be much less, no neuropathy, minimal hair loss if any at all. The down side, it hasn't been tested on early stagers post surgical, thus the trial. I very much like the idea of possibly helping other women in our situation have more treatment options, and possibly help to find another drug even more effective than standard treatment. On the other hand not knowing 100% if it will work for me (if selected), well that is something to consider.
Thanks Zoziana, it is so nice to know that there are others out there going through the same things at the same time. Port scheduled May 4th-my therapy starts on May 9th, no matter what I choose to do. I am really worried about Neuropathy if Taxol is given.
They have given me some info on Glutamine, thoughts from anyone on Neuropathy side effects and the use of Glutamine? Thank you! Slapp
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Zoziana I was officially diagnosed July 13th 2010. Surgery first. Didn't have chemo/herceptin till October 5th 2010. I even asked about chemo first but they said it was for larger tumors. My tumor was thought to be 7cm at first. (Actually 5.5cm IDC with 1cm DCIS). I was like how big it big? Anyway I'm still NED.
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Slapp - for what it's worth, I decided against the ATTEMPT trial and TDM-1. For me, it was the fact that I was unsure of the long term safety of the drug. There is a thread on here dedicated to the women who are on that trial - so you might want to check that out.
I had a fascinating conversation with my MO today about the pain I am experiencing in my ovaries/uterus after my last Lupron injection. This is the first time I have had such pain.
She said that the effects of chemo on my ovaries has now subsided. And she believes that the dose of Lupron that I am on may not be sufficient. I have the shot every three months. She believes that as I get closer to the time for my next dose - that my ovaries are "waking up", and then pain is caused by the Lupron trying to put them back to sleep. In her words - my ovaries waking up is a bad thing. She wants them snoring lol...so we are going to measure my estradiol levels today, then again at the next two appointments to see if they are rising - if they are, they will increase my dose on the Lupron, or move to a monthly shot. Since I am on tamoxifen, she's not overly worried - but she wants that extra protection. My body is trying really hard to make estrogen dammit!
She's also decided that since my breasts are so incredibly dense, that we will do an MRI in October, then a mammo next april, following by another MRI next april She things this will give me an excellent baseline - she said for MRI it's best to have several scans for a good baseline. Then if all is good - since I will be at the two year mark - we will go back to mammos every year.
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Zoziana, that sounds like good info.
Perhaps I got the big guns because I had multifocal disease.
At any rate, the trick is to make a decision with which you feel comfortable. I'm glad, now, that I did TCHP, though I was terrified before it began. Hindsight, 20/20, all that jazz.
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Still hoping to hear more about follow-up scans, if anyone can share what their doctors do or do not recommend...
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CassieCat
Just passed the 4 year NED mark on March 22. Count started the day of my post neoadjuvant TCH lumpectomy.
Never had a Pet Scan. At diagnosis it was MRI, mammo and ultrasound scans.
My breast surgeon follows his patients for life. For the first 5 years it's every 6 mos for clinical exam. June/December. In October, the anniversary of DX I have my yearly both breast 3d mammogram and ultrasound because I have dense breasts. I was also getting a second mammo& ultrasound on left breast in April because I had developed 3 small oily cysts along the scar line but they have since dissipated so it's once a year mammo & u/s.
I see my MO every 4 mos for blood work and we talk about all kinds of stuff but no physical exam unless I complain about something.
In the past 1 1/2 years I've had mucho trouble with the AI's. All kinds of bone, muscle, joint ligament issues. Felt like a marionette kinda strung together and getting stuck in weird hurtful ways:( So just to be careful my MO did a bone scan which was clear.
Just now getting a cardio work up because I was told that cardio issues can pop up years later. This cardio stuff is at my own behest.
Every 2 years bone density .
So far that's it for me....
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slapp - I used l-glutamine powder during chemo and did 30g daily, divided into 3 10g (about a teaspoon) servings. I dissolved it in a cold non-acidic drink. Don't use something hot as it denatures the powder. Also, don't mix it with food - trust me on this, lol! I also took acetyl l-carnitine, but there has been some discouragement about using it during chemo due to some study data, but the doses they usedwere quite a bit more than I took. Also took a capsule of B6 daily. I did experience neuropathy that resolved before the next infusion (I had TCH, so 21 days) until the half way point, then it stayed, but was mild. By several months after the last infusion the neuropathy was gone
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KateB79: Yep, I bet that is it. The MO consultant said that multifocal disease is definitely like having a larger tumor, in terms of how to optimize treatment.
Glad you are comfortable with your choice; you are so right--we all need to have confidence we did the best we could at the time!0 -
Cassie-
I am at Beth Israel in Boston, one of the Harvard hospitals. At the very beginning before my surgery I had a CT scan for my peace of mind. My follow up protocol is to have an MRI and Mammo alternating every 6 months and to see my BS once a year and my MO once a year. However, since I have dense breasts- well breast now- the mammo has never worked on me. My MO doesn't even do bloodwork any more though she would if I asked her to. Because I'm the callback queen, every mammo or MRI has been followed up by more scans which I hate. So far all has been B9, but it's stressful. Am considering a prophylactic mx on my good side to avoid more breast scans.
It seems the amount and type of scanning often depends on individual doctor and patient.
Good luck!
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Mom writer I'm at Beth Israel too! :-)
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I was born at Beth Israel.
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Lago, great place to start off life!
Tresjoli, Dr. Wulf is my MO- I love her! She thinks outside the box. Dr. Sharma was my BS- don't see her as much. She is extremely skilled and compassionate. Who are your doctors there? And what is your follow-up protocol?
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