TRIPLE POSITIVE GROUP
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hi all,
my feet hurt when i walk. the sole, the ball of the feet. could this be neuropathy i wonder? any thoughts
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DeniseT - congrats on theGREAT news!!!!
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SP you've got that right ... I sat at Panera's this morning eating breakfast with my Husband and broke down and cried...
I just didn't want to do this .. just no.. but after MO talked to me and the Oncologist Pharmacist ( who FYI I adore ) talked to me ..plus my MO measuring me .. I was like " Yeah.. lets kick this shit out of my body!! "
It was proof this is working..
MO said my labs looked good except one my Creatain ( sp?) was up .. and which meant I was a little dehydrated ... so "I" suggested maybe I should start coming in on the Monday or Tuesday after chemo to get fluids... everyone was on board.. So after each chemo I will be going for fluids.. maybe I can keep myself out of the ER ... maybe..
My MO agreed that my fevers on day 5 ad 6 where from the Neulasta ......
I can go walking when I feel up to it.. and she said if I wanted too I could go swimming??!! Which I'm not but she said it would ok if I was in a pool.. not a river or lake...
AND SpecialK you will be happy to know that Vanderbilt Cancer Center standard for running Herciptin is 1 hour after you get your loading dose ..
The pt. can request 30 mins and up to 90 min. but their standard care is 1 hour for maintenance dosing ...
I had the Neulasta injector put on my stomach this time .. I'm not sure if I'm going to like it.. I keep bumping it on stuff.. ....
Very tired.. came home and took a 3 hour nap... didn't get any sleep last night... plus they gave me some Ativan in my IV ... makes me sleeeeeepy ...
It was all uneventful sat there and watched tv with my hubby... ate lunch... took much less time about 6 hours including MO appt.
So down the rabbit hole of chemo I go.. wish me luck..
if I don't respond right away .. I will
much love love love
P.S. I'm going to cross post this Chemo in June boards0 -
deni I can agree...
stood and talked with one of pt today who waved at me from her little room .... I was coming back to the bathroom..she said something like " this must me a tie dyed day" because I had on my tye dyed shirt and she had just seen another lady with tie dye on....
we stood there talking about our treatment.. she's Triple positive too.. was sitting there with her "ice mitts on:::: I was like talking to an old friend that you haven't seen in awhile.. it was nice to know that I was not the only one there .. esp. doing the icing on the hands and feet..
I hope I see her again.. she said that sounded like we were on the same schedule .
I have met so many nice and good people here at home and on this board.... wonderful souls that are put there just right time.. when you needed what they had to offer .... a lot of compassion and love... it gives me hope for this world.. there are good people abound...
There is a quote from Lord of the Rings that I keep with me all the time.. and when I'm feeling bad about folks and my cancer
I pull it out to remind me there is good in the world..
I feel it fits this cancer journey ..Frodo: I wish none of this had happened.
Gandalf: So do all who live to see such times, but that is not for them to decide.
All we have to decide is what to do with the time that is given to us.
There are other forces at work in this world, Frodo, besides the will of evil."
I hope this made sense.. every time now when I read it I tear up ....
hugs
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DEniseT - I'm just newly diagnosed with triple positive BC and your LOTR quotation really hit home
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I just found out on Thursday that I'm Triple Positive. My core biopsy report said my KI-67 is 25, Grade 2, my HER2/IHC was equivocal (2+) tumor is 1.4 cm ultrasound didn't show any weird lymph nodes. The FISH test ratio is 2.0 which is the entry level for being positive. I'm highly ER and PR positive at 95% for both. I have surgery on the 21st at Johns Hopkins for a lumpectomy. I'm 65 and terrified of how this treatment will destroy my life. I would greatly appreciate hearing your experiences. I think I could have handled everything else but this HER2 has undone me
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Hi, HapB - They said that if there is no lymph node involvement I get chemo plus herceptin and if there is lymph node involvement I get a nastier chemo and herceptin. Would you be comfortable sharing information about your setbacks? I'm trying to prepare myself...
Regarding your 2nd post above about not having chemo - I've been reading that some studies are showing that maybe chemo isn't necessary with high ER/PR levels and a lower FISH ratio but I keep confusing myself. JH won't let me talk to a medical oncologist until my post-surgery appointment in late August which is frustrating as h$ll. Have you read anything about having a Mammaprint or have your doctors mentioned it? JH doesn't use it which I also find frustrating as h$ll
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HapB - so sorry to be hitting you with so many questions but how did your diagnosis change after your surgery
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HepB, have you read the article concerning Herceptin's lesser value in lower FISH ratios BC? And how much higher was the FISH ratio from the lumpectomy?
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hap - it doesn't exist. There are no trials of Herceptin only therapy, as it is found to work better with a taxane. There are some trials going on now that are combining targeted drugs with anti-hormonals, and without chemo, but that data will not come out forquite a while. There are obviously stage IV ladies on this site who have been receiving Herceptin on its own for quite a while, but I believe they all receivied chemo initially. I only know one other member here who did Herceptin only, and she progressed to stave IV, and is now on chemo.
lita - Mammaprint will undoubtedly come back as high risk - even though it is available for HEr2+ patients (and Oncotype is not) virtually all Her2+ patients come back as high risk, I doubt that it would be informative. The other issue is whether your insurance would pay for the test (it is about $5,000) if you are being offered anti-Her2 therapy based on your current clinical info, as that is the standard of care.
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Lita I had my lumpectomy at Hopkins. I also am triple pos. I was in the ATEMPT trial and got targeted therapy which is herceptin plus chemo. Did that for 1 year. Also had radiation. Hopkins is great. I was 72 at diagnosis and just had my 2 year clear mammo. You can do it
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Hep - here you go
http://www.breastcancer.org/research-news/her2-pos...
I didn't realize you could be equivocal on the FISH test!
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Wabals, thanks so much for the encouraging words! Did you do your chemo/herceptin treatment also at Hopkins? We live two hours away, in Delaware, and I'm wondering how that will work if I'm feeling totally lousy..
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SpecialK - I was thinking about the Mammaprint being used to determine what molecular subtype my cancer is - HER2-driven or a Luminal type, as perhaps that might help with treatment decisions. Does that even make sense?
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Lita19901 - sorry you have to be here but welcome, you are in the right place. This is a wonderful community of SURVIVORS and you will find lots of great information and support!
My experience is unique because I am in a clinical trial without chemo; I have been getting Herceptin and Perjeta infusions since last September and I take daily AI. I've had great results from neoadjuvant treatment. I recently had a Unilateral mastectomy and DIEP flap reconstruction. Pathology results: clear lymph nodes, margins and only a few single cancer cells left in the tissue - they labeled the results as pCR. I am being treated at Cancer Treatment Centers of America where they encourage total body wellness to treat cancer: I participate in naturopathic, nutrition, acupuncture, and massage therapies and I believe this approach plus the HP AI helped me achieve the good results. Info on the trial is listed below
I was able to work full time up until my surgeries and just recently returned to work. My side effects seem to be from the daily aromatase (I've been on Arimidix and now Letrazole). SEs include muscle and joint pain, nose running, fatigue, dry skin, and hair thinning (due to brittle hair breaking off). My biggest problem at the moment is severe tailbone pain.
Best wishes on your journey...we're all pulling for you. Sending prayers and hugs your way
NEOADAPT – A phase II study of NEOADjuvant Aromatase inhibitor and Pertuzumab/Trastuzumab (NEOADAPT) without chemotherapy for women with breast cancer https://clinicaltrials.gov/ct2/show/NCT02689921?term=NEOADAPT&rank=10 -
lita - before you try to get a Mammaprint test done on your lumpectomy tissue, it might be a good idea to have additional Her2 testing done on your removed tumor after lumpectomy. Tumors are not homogenous, so different areas of the same tumor can yield different hormonal receptor percentages and potentially different strengths on Her2 testing.. If you had a strongly positive Her2 result from your surgical sample, that might provide enough info for you. My take on the systemic treatment piece for triple positives with strongly ER+ tumors is that there is potentially less effect from chemo, but not necessarily from Herceptin. It is very difficult to suss out which part of systemic treatment is having the effect since multiple agents are infused together. Also important to note, unless knowing whether luminal type or Her2 (ERBB) changes treatment it is not particularly useful info. If it is any help, my ER+ was at 96% and I was strongly HEr2+ and my Mammaprint was definitely Her2.hap - it is important to understand how the FDA trials work - Phase 1 is not focused on results from the drugs being trialed - it is focused on safety of dosage and side effects and how the drug is metabolized and excreted, and usually recruits the smallest group - sometimes, depending on the drug, these a healthy patients that do not have the disease the drug is intended for. Phase 2 trials are somewhat larger, and take the established safe dose from Phase 1, and now efficacy and side effects are looked at by having one group receive the drug and compare them to a group that receives a placebo, or a different drug. Phase 3 only happens if the results from Phase 2 were positive, and is larger still. This phase looks closer at more diverse patient populations, and potentially combines the trialed drugs with other drugs, or at different dosages. There would be no study results from Phase 1 of the trial that deni is participating in, as phase 1's only purpose is to establish the safe dose. There may be data released on effectiveness at the conclusion of Phase 2, but this phase won't end for almost another year, it is still currently recruiting. The release of info usually occurs some time after the conclusion of the last recruit's enrollment, so this could be a ways off. I participated in a Phase 2 Her2+ vaccine trial that started recruiting in 2007, and reported out in 2016, so this is a time consuming process.
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hap - that is most likely because both of these agents had been previously trialed separately, and were already FDA approved. The safe dose and side effects for both drugs have already been well documented. Taxol has been used for many years, and ther is longer term data already available on Herceptin use with other taxanes that are stronger than Taxol. The DF trial was looking at whether this combination, with only a single chemotherapeutic agent rather than multiple, was strong enough to be efficacious for those with smaller tumors, it was not a FDA approval trial. Even though the trial period ended in 2010, I am sure those patients are still being followed. My vaccine trial ended the active phase in 2015 but I had contact every six months for another two years.
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This abstract was dated 2013, which is 3 years after the end of the trial period. It look to me that they are following the patients and that info is being published and expanded on. Not sure that drug company funding is an issue as these meds would be used for these patients anyway, and as I said above, this is not a FDA drug approval trial, it is a study. This is more likely to be funded by research dollars at institutions - although it looks like Genentech is helping out.
http://www.abstracts2view.com/sabcs13/view.php?nu=SABCS13L_974
If you look at the clinical trial identifier, it indicates that the study is no longer recruiting but is ongoing. That means they continue to follow these patients:
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HepB et. al:
Regarding tailbone pain: https://www.spine-health.com/conditions/lower-back... (tailbone pain caused from sciatic nerve inflammation)
Regarding tailbone pain from sciatica and herceptin: http://www.ehealthme.com/ds/herceptin/sciatic-nerv... (I know, not exactly high science, but still..)
Would it kinda make sense that the sciatic nerve could become inflamed from herceptin as it can cause other damage to other nerves?
And I also read about tailbone pain from perinural cysts that can be asymptomatic until they press on the sciatic nerve on another breast cancer forum from a few years back.
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Cross post from "Starting Chemo June 2017"
Just got back from getting fluids .... feel better.. Starting with this round I go in the Monday after Chemo Friday and get fluids..
Last night was a booger ... felt like my bones where made out of glass.. blah... we feeling "out of it" last night and today...
after getting liter of fluids at the Infusion clinic I feel better.. I hope it last...
I'm having more bone pain this time around , from my knees down ache ... I'm taking Claritin... and Tylenol it helps.. I felt so bad last night that I couldn't take my walk
. Walking helps me a lot with the bone pain ... I'm wondering if its the Neulasta and/or the Herceptin ?
Also having more of a "sinus" headachy headache this time around ...
In some ways I'm better this time around... smells haven't really gotten to me yet.. oh but they will lol... Eating has been really good .. I'm hungry.!
Just can't find something I really want to eat.... nausea is under control... learned the first thing in the AM I eat crackers... if I keep a little something on my tummy it helps with the nausea.. plus the meds..
Found out I can't take Phenergan ( sp?) .. it makes me crazy .... so I'm sticking with the Zofran.
Hugs to everyone .....0 -
Hapb - I went to CTCA for a 2nd opinion because I did not want to do chemo as my hometown doctor suggested. It just so happened that my current MO received FDA approval for the clinical trial using HP and AI, no chemo. He explained the risks and if the cancer grew or spread then he would have started me on chemo. MRIs were done every 3 months; both tumors were not visible by my first MRI. I was the first patient in the trial and I believe he has 8 total in the study now, all seeing tumors shrinking. I was the first to have surgery too.
I agreed to be in the trial because we could quickly change course if the cancer grew, my MO had several patients off study that had great results, and he said only 5% of women getting chemo benefited. The study aims to prove that HP eradicates the cancer without chemo and patients can maintain quality of life with no chemo side effects.
Specialk - thanks for your input, you always have great info! My MO said the trials are a very lengthy process indeed; he's been working on getting this trial approved for I believe 5 years. He said the FDA process is cumbersome and everything has to be precise so they have been documenting my every move, symptom, etc throughout the trial.
There is so much information out there it can be confusing to know which way to go. I had an instant trust and faith in my MO and so far it has worked in my favor. I did not have the same feeling with my hometown doctors
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Hapb - forgot to mention I am definitely going to ask my MO about the Herceptin/tailbone pain correlation. Thanks for all the insight you have provided. I will share with the group what my MO says
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denise - your bone/joint pain is far more likely to come from your taxane based chemo and Neulasta than from Herceptin. While there has been a lot of discussion recently on this thread regarding pain from Herceptin, it is not the norm. Taxanes are well known to cause bone pain, as it Neulasta. You might want to try Aleve - seems to work well for this type of pain, and you can dose less frequently. Some MO will also let you double up on the Claritin, for a 20mg dose, instead of 10mg.
hap - read this abstract - it shows a follow-up on the APT trial, and is dated this year. I don't believe this trial was funded by drug companies (Genentech - maker of Herceptin is included but is not the primary sponsor) because this trial was advocating LESS treatment, with drugs that had been long approved. The primary sponsor is Dr. Winer and Dana Farber, that is why I believe it is funded with research dollars, not drug company dollars. Drug companies stand to lose money if this trial successfully demonstrates less treatment provides the same outcome. The purpose of this trial was to determine if those with smaller tumors could receive less toxic treatment - no anthracycline, and the weaker taxane, and still have efficacious treatment. These drugs had already been prescribed for quite some time, for this population of patients. The side effects are already documented many times over and well known - I don't believe this is a case of the fox guarding the henhouse.
Also, I concur with KB870 re the Herceptin article - 1,872 people have died, not 19,000 - from a variety of causes, not the least of which is metastatic cancer. The giveaways are time on Herceptin - anyone on longer than 1 year is likely a stage IV patient, and many of the people were on longer than that. Also, if you look at the patient breakdown you will see metastatic breast cancer, bone cancer and lung cancer. Also, because the Herceptin is not given in a vacuum - was combined with other drugs, there is no way to determine which caused what. Almost half of the patients were 60 and over, and potentially came to treatment with pre-existing co-morbidities.
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Lita - I too was really thrown with the HER+ diagnosis. I had already had the lumpectomy (no lymph node involvement) and brachytherapy and thought I was just going to see the MO for AI therapy when my final path report came back. For most of us, not knowing what comes next is the hardest, especially those who are control freaks like me. The HER diagnosis did scare me the most - I had visions of the tiny lump multiplying everywhere. I did 8 rounds of Taxol but quit because my neuropathy got so painful. Symptoms ended fairly quickly after that.
I still have Herceptin until the end of Jan. and have started the AI. As you can see from this thread, SEs are many and varied and not everyone finishes the recommended course of treatment. You do have control of that. Those of us who are older or who have other health issues make quality of life decisions differently than those who are younger. There is no "right" answer and unfortunately no guarantees. But we know more about bc than we did even 20 years ago (when my husband was a practicing general surgeon). From my reading, the discovery of the HER protein and herceptin to combat it have made a difference in outcomes.
Find a health care team you are comfortable with and who take time to answer your questions. Spend time here looking for threads that fit your needs at the moment. While I still go back to the lumpectomy lounge, I now spend more time here and in the AI forums. The group who started chemo in Feb. have established a private Facebook account and have gotten very close. We watched each other's hair fall out and are now seeing it come back in.
For me, being HER+ means a slog rather than a march but I expect to get there and think you will too. Just breathe.
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hap - as I stated earlier, the patients enrolled in the Dana Farber study (APT) would have been getting Herceptin anyway - with likely either Adriamycin and Cytoxan, or Taxotere and Carboplatin, so Genentech may have supported the study with some funding, but this type of study is different from a study to bring a new drug to the market. Herceptin had been established as a viable option for early stage breast cancer prior to the start of this study. The NCCN guidelines state that patients with tumors that measure .5cm or larger "consider" chemo and Herceptin, the purpose of this study was to give a less toxic chemo regimen to patients who are node negative, stage 1 and previously would have received harsher chemotherapeutic agents.
Almost all chemo drugs and targeted therapies, including Herceptin and Perjeta, start testing in trials on metastatic patients, this is pretty standard. Herceptin was first trialed for advanced stage breast cancer patients in the mid 90's. Trials for use for early stage (up to stage 3A is considered early stage) were initiated in 2000. The APT trial was initiated in 2007.
http://ascopubs.org/doi/abs/10.1200/jco.2014.55.5730
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)32616-2/abstract
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HapB,
Let me begin by saying that I'm sorry that you're suffering from such awful bone pain. How frustrating for you! However, I must respectfully disagree with your assertion that "There is just not enough data about Herceptin at this time." Herceptin has been used by thousands of women since the late 1990s, and it has been safe and effective for many of them. That doesn't mean that women haven't suffered side-effects from it.
In some ways, you seem to be looking for data that will support a decision to forego chemo and/or Herceptin. No one enjoys cancer treatment, and, of course, we should remain skeptical of medical studies and their relationship to the pharmaceutical companies that may sponsor them. While all studies have their limits, they are the best we have.
From my perspective, insurance companies and the government would not pay for expensive treatments like Herceptin and Perjeta if they didn't believe they worked for many HER2+ breast cancer patients. Best wishes, and I hope your pain subsides soon.
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Trisha, I sent that link to my SIL, a cardiologist. I'm seriously considering stopping Herceptin at six months. It sounds like Adriamycin plus Herceptin, plus radiation to come, and my age, means I will have many of the risk factors for heart damage to occur. (I will continue to get my Herceptin infusions on a weekly basis, at 1/3 the dose of what people with every three week treatment get, but this study states that it's not mitigated by dosage.)
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Taco1946, I love the name! I too was completely thrown by the HER+ diagnosis. I was scheduled for a lumpectomy followed by radiation when everything went south and I found out I had BRCA2 and HER+ and I'd be getting a BMX and chemo so that I can get the Herceptin that I need in order to kick this to the curb. Quality of life is one of my top priorities and I'm struggling to rationalize the need to pump my body full of poison in order to get better. I'm perfectly healthy.
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Thank you SpecialK...
I think its the Neulasta... after getting my fluids yesterday I felt well enough to walk last night and again a little bit this morning and it seems to have helped a lot...
Not as bad today as it was Sunday...
My whole problem I think is dehydration .. Even before all this started I stayed dehydrated ... it's been a problem I've had for years...
Hope all is well this morning..
hugs from TN
Denise0
