Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy
Comments
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I have gotten an update from the first oncologist on my wife's scans and liver. The first oncologist, second oncologist and Dana Farber oncologist all answer my e-mails and since I am half way around the world in Hong Kong that is very helpful.
"I have reviewed the CT and radiologist recommended MRI of liver to be
sure. I believe the spots in the liver is not related to cancer but it
make sense to get a baseline MRI of liver and repeat it later. Another
option is to repeat CT of liver in three months after chemo but it
would be better to be safe. Let me know how to proceed. Should I call [your wife]?"I don't know if the word "spots" is a typo or if there are more than one spot which in my mind would be ominous. I wrote back that I think my wife should get a MRI of the liver ASAP to be sure and safe. I also asked if it is one spot or many spots and how big they are. I also asked what bearing this will have on the treatment plan. I guess this is just the way it is going to be. Interested in your opinions. Of course I told the oncologist to call my wife directly and speak to her about but I also called my wife and told her that she should get the MRI. More later.
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BlairK I'm so sorry you are dealing with the added stress of the liver finding. Often scans uncover benign areas such as cysts but it's very unsettling. I think the treatment plan sounds very reasonable. 4 cycles of TCH will reduce the likelihood of longer term SEs but at the same time give your wife all the benefits of Herceptin.
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BlairK,
If I were newly diagnosed as stage 1, trastuzumab would make sense and so would ovarian ablation, and possibly hormonal treatment, plus better diet and better exercise. So would radiation for some patients. What percentage of improvement would your wife get with each of those treatments based on her personal cancer characteristics?
What I can't tell from reading the comparison that is being made for you about the percentage who didn't do well, is which treatments those who did poorly chose to do out of ALL the available treatments? A comparison just based on whether those patients did chemotherapy or didn't wouldn't really tell the whole story.
I hope it provides some reassurance to know that someone who is stage 1 and who has not taken advantage of several options available still has done well.
A.A.
P.S. Whatever you and she choose to do, regardless -- The way I look at it is, the pool of patients includes those who have comorbidities, weight issues, smokers, etc., and those things DO influence how well a person does with treatments. Are those the patients who tended most to recur? YES. Is your wife among them?
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BlairK - Is your wife post-menopausal?
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Blair-add a question of mixing taxol with the herceptin, rather than the taxotere/caboplatin protocol to see what their thoughts are. Also, I am not sure if it works with taxotere, but that and taxol are in the same family. I was advised to take big doses of Acetyl l-carnitine to reduce neuropathy symptoms. I think it helped. There are studies currently under way on this.
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AlaskaAngel - My wife is proper weight and non-smoker. She is very active and has a high metabolism rate. The only thing I regret looking back on it is that I feel she ate too much meat and not enough vegetables and fruits.
Omaz - My wife is post-menopausal and almost 53. I am 56.
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My wife will get an MRI of the liver Monday morning. Then go to Penn. I am now in Singapore. Very busy with Christmas spirit. I wish my wife could be here to see it.
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Blair - I've sent you a PM - fingers crossed for the MRI - as we say in la la land - here's hoping for boring results
Sue
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BlairK - Your wife and I are the same age, I'll be 53 in two weeks. Hang in there, you and your wife are covering all the bases and doing a great job!
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Blair-you can't beat yourself up over worrying about how it came about.If you heard the news this week, they basically said they still have no idea what causes it, or what things contribute. I didn't feel there was anything new, other than the fact that they don't think hair coloring contributes. Good thing, because I have not quit that! LOL.
My BS told me once that they feel like they are at the precipice. They have all this information but not al lot of successful ways to interpret it. She thinks the next ten years will be major.
Other than the her2 component, which still freaks me out, if I have to have cancer, I am glad it was breast cancer because it is at the forefront of a lot of research and marketing money, so there is a lot of attention being paid to it.
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BlairK,
MRI, yes. I just want to add that spots due to things like cysts and hemangiomas are more common for middle-aged people in general, who most of the time aren't being analyzed for cancer and so they never know they have spots in their liver(s). I've had several hemangiomas that were watched for the first year or so by ultrasound to be sure they were stable/hemangiomas, and they have stayed boring.
Meat... I was raised on home-grown fruit and vegetables but ate some meat... I ate more of it after marrying because my mate is carnivorous... With the cancer dx, I now eat mostly vegetarian/organic...in part because almost every food involving meats is so high in calories and with chemopause and weight gain, I no longer had the option of eating that many calories. I can't speak for chemopause that occurs with the taxanes because I had CAF (and gained 25 pounds with treatment).
Completely aside from the issue about inhumane treatment of animals..... Due to the difference in types of fats involved, I limit animal fat consumption. I'm not a chemist and the discussion is complicated, but my admittedly less-than-expert understanding of it is that balancing the omega-3's with omega-6's, plus understanding what the long-chain and short-chain composition is, is what is key.
My very simplistic translation, which I can't vouch for but is just "food for thought" here in trying to understand it, is that the omega-6 chemical composition of animal fats has a greater affinity for bonding with toxins in the first place, and therefore in the second place means the toxins then tend to be retained in the body tissues; whereas with non-animal fats that chemical bonding either doesn't happen or is weaker and there is less retention of toxins. Again, please don't take that as gospel. But the principle is, keep the omega-3's and omega-6's in balance. The her2support.org forum has a good discussion about it.
On the horizon.... since 2009, a number of clinical trials have been initiated that offer the old, generic diabetic drug metformin for cancer patients, because it had been noted that diabetic patients with cancer who were taking metformin had better cancer outcomes. This month a researcher published the results of studies that, if they hold up to challenge, show that metformin causes cancer cells to starve to death.
As you can see, I do believe that a more thorough understanding of metabolism is important in finding better answers to cancer. As part of that, I believe that training endocrinologists more specifically in understanding cancer would be extremely helpful to us as cancer patients, especially considering the importance of hormone management.
Thus, I believe that once there are endocrinologists trained more specifically in understanding cancer, we would get the best results by having an endocrinoloist sit on each of our tumor boards, not only for a clearer definition of our therapies for treatment but also for providing those specialists who only understand surgical, radiologic, and toxic therapies the opportunity to understand what the repercussions actually are (the SE's) for patients. Doctors have been so quick to dismiss them.
I have not had the taxanes and my only direct experience with them is my sister's treatment for secondary IBC when she had a taxane. Chemotherapy was traumatic for me in a number of ways in that I am chemophobic, but also in that at the time I was treated with Cytoxan, Adriamycin and fluorouracil, the antiemetics didn't make any discernable difference for me. (very similar to TheLadyGrey's first experience....) So I don't oppose chemotherapy on the basis of the long temporary exposure to it. I did get through it. Losing hair is hard on all of us but that too was not a deterrent for me.
My comments go a bit beyond your current situation, BlairK, but hopefully they help with your thoughts about meat, etc. and the background as to why I think there are better options. What is so terribly difficult is that trastuzumab used alone for tiny cancers hasn't been investigated like it should have been by now, over 10 years after the beginning of trastuzumb trials, and is just now being offered that way in a few specific situations.
However, I do know from reading some of the forums that there are some independent individual oncs who are prescribing trastuzumab used alone followed by hormonal treatment for patients who refuse chemotherapy and who are HR+.
A.A.
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Blair
I was just reading through this thread and I wanted to give you my story. I found my lump at 41 and after a biopsy confirmed the cancer I was scheduled for a lumpectomy. I went through the normal presurgery scans - ct and bone scan. They came back clear except the CT scan showed a very small nodule on my lung. My surgeon dismissed as focal scarring and I had the lumpectomy. When I went ot start chemo for stage II b/c, the "first" oncologist said he wanted the nodule checked out via pet scan. I had the pet scan and the nodule was indeed focal scarring. However, the PET scan revealed multple liver lesions and multiple bone lesions and chest node involvement. This all happened within a matter of 3-4 weeks. I had a liver biopsy confirmed the liver mets were also HER2 positive. My first oncologist said, it was no long a battle for a cure but just quality of life. I dumped him and my current oncolgoist told me that she believes many many women in earlier stage cancers are really stage IV but not caught because PET scans are not ordered and this does show up on the ct scans. She told me I will get the very same chemo as if i was stage II and I can expect to do well. I did 6 cycles of TCH plus zometa in 2008 . after three cycles, we did another pet scan and all areas of metastitsis were resolved. I have remained "no evidence of disease" now for over 3 years. I get herceptin still every three weeks and Aredia every 18 weeks I am also on Tamoxifen since I was mildy ER positive in the breast. I would like to urge you to requst a pet scan for your wife over the MRI. I truly believe the benefit of them actually discovering I am Stage IV is that I will get Herceptin for life. I think as long as it works for me, it is what is keeping me from having a reoccurance. otherwise, it would have been not covered and discontinued after one year of treatment. Sending you and your wife my best.
Jennifer
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PET is more definitive so I wouldn't argue with that, although insurance is not always willing to pay.
JeninMichigan, you are saying that the bone scan showed nada, but within 3-4 weeks the PET scan showed bone lesions. What CTs did you have done originally, just the chest one showing the lung "scarring" (nodule)? Or did you also have abdominal/pelvic CTs done at that time as well?
A.A.
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A.A.
I had a chest/abdominal CT scan prior to surgery and also a bone scan. The c/t scan was clear except the lung nodule. a little less than four weeks later I had the pet scan and there were four lesions on my liver ranging from 2 cm to 4 cms. Most of my upper right ribs, left hip and chest nodes. Her2 moves fast when it is on the move and personally I felt like the stress of the biopsy and surgery got it going. I know HER2 is aggressive and that is dangerous but I also take comfort in knowing that drugs like Herceptin and Tykerb and many more in the works target this protein and when it works... IT WORKS!!
Jennifer
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Alaska, I was supposed to start the metformin study last month, but got booted out since my tumor ended up being a smidge too small to qualify. I did take all the study info to my doc who agreeded to give me a prescription. Since it is so cheap, in fact free at a grocery store here, I just buy it without running it through insurance. I am doing my own trial. Lol.
Jen....couldnt convinvce my onc to do a pet scan so far...makes me crazy. I did however manage to back door my way into a ct scan of my abdomen and pelvis, checking my kidney stone and uterine fibroids, which is clear. When I was supposed to start the study they did a lung xray and full blood workup. That was all good. So....except for knowing about my brain, I am as close to knowing as I am going to get. I am on herceptin until March, so I have 3 months to keep working on him. -
BlairK - Just found your thread today. I so hope your wife's MRI comes back clean. We have a somewhat similar timeline. I was diagnosed 9/6/11, had BMX w/reconstruction and clear nodes 10/4/11. Small invasive component (3mm). I wasn't even going to have chemo even though Her2+ until my oncologist sent my biopsy off for Oncotype DX test. This came back with high score of 43 which meant a recurrence rate of 26%. With chemo, onc thinks he can drop this down to 10% which was a no brainer for me. I start on 6 treatments of Taxotere, Carboplatin, and Herceptin on Wed, Dec. 21st. I think your wife is starting the day before, right? Please keep us posted and let us know how her tests turn out. I'll be thinking of her. Judy
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Jeninmichigan,
Even though it is very personal information, it would help if signatures included age, or at least something indicating where each person is in terms of menopause. The cancers of those who are younger and pre- or perimenopausal (younger than age 50) with strongly positive HER2 bc tend to be faster-growing cancers, and often HR negative. Those who are closer to menopause are slower to progress.
fluffqueen01,
I am taking what is probably too small of a dose of metformin to be helpful but we don't know yet what the dose has to be for it to be helpful and it probably varies according to the patient. I'm overweight but not obese and I have no diabetes. I ended up eating what is basically the ADA diet because of chemopause, with 25 pounds of weight gain. Clear up to age 51 I was within normal BMI, and that is a familiar story to those who are older and who go through chemopause. Doing the same amount of exercise as I did before treatment didn't help to lose weight, and it was much harder to exercise after having had all the steroids given with chemotherapy because of the effects steroids have on muscle, and the loss of most of what muscle-building testosterone we have as women. Those who are younger at time of treatment innocently post saying the effects of chemo aren't "that difficult" without any personal knowledge of that age difference in the effects. I hope metformin use does starve cancer cells to death!
BlairK,
I never had a PET scan, but did have breast MRI's twice, plus one brain MRI.
A.A.
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P.S.
The other invisible factor to keep in mind with HER2 in terms of the significance of age/menopause is that when reading statistics about HER2 positives as a group, versus the group of all breast cancer patients, the majority of the group of HER2 positives are younger and not menopausal/postmenopausal, whereas the vast majority of all breast cancer patients are over the age of 60 and menopausal/postmenopausal.
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A.A.
I was 41 at diagnosis so premenapausal. You are correct that is does make a difference and should be something in the signature line that you tick off. I did have my ovaries removed two years ago but I am still on Tamoxifen as I am a very good metabolizer.
Jennifer
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Sunday - Dec. 11 - 8 AM - Singapore. I see a ton of posts here which I appreciate and will read carefully. Please keep them coming. I was exhausted yesterday - I am not sure if it is from my travelling, worrying about my wife or both. I got 14 hours of sleep - 6 PM to 8 AM (not withstanding my Dad and Mom waking me up at 2 AM in the morning via Skype over nothing). My wife will have the MRI Monday and then go to the third opinion at Penn. I have told my wife to tell Penn about the CT scan of the liver. I hope she will do it. If I read some of the posts correctly and I need to read them all carefully - the ones that have come over this weekend - the treatment plan of my wife may not change - Taxotere and Cytoxan and Herceptin - four treatments - one treatment every three weeks and then Herceptin every three weeks for a year. Arimidex one pill a day for five years after the chemo part is done. If god forbid this MRI result is a "mets" to the liver, do you think they would change the treatment plan and make it more aggressive in the choice of chemo and/or number of rounds? I asked the first oncologist if he would change the treatment plan but I have not heard back yet. I guess he is waiting for the results of the MRI.
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Blair - your wife should take all of her scans to see the new oncologist - they will want to see them. My onc is remarkably skilled at reading CT scans and never reads the report until after he has inspected them himself - trouble is they are not all as skilled.
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The next generation of anit HER2 drugs are on the way. Can you please send me your comments and what you know about this.
Two Drugs Offer New Hope for Breast Cancer Patients
By Alice Park Thursday, December 8, 2011 « Go back to article
PrintIt's not often that researchers get to report good news for cancer patients, but this week at the San Antonio Breast Cancer Symposium, researchers announced encouraging results from studies of two cancer medications that appeared to keep women's disease from advancing.
In the first trial of 808 women with advanced breast cancer, an experimental drug from Genentech called pertuzumab stalled patients' cancer for a median of 18 months when added to standard treatment, compared with a year for patients who got usual treatment alone. Whether or not it improves patients' survival isn't clear yet, but the study is ongoing.
Pertuzumab attacks the same target as the cancer drug Herceptin, cells that overproduce a protein known as HER2 that promotes tumor growth. Pertuzumab works in a slightly different, but complementary way, and together the drugs appear to slow down the disease. About 20% to 25% of breast cancers are positive for HER2 - these are the women who might benefit from the new pairing of drugs. "Pertuzumab is a winner," Dr. Eric Winer of the Dana Farber Cancer Center told the Associated Press. Winer was not affiliated with the study.
The second trial involved Novartis AG's drug everolimus (Afinitor), which is normally used to suppress the immune system of organ transplant patients. Researchers coupled the drug with an aromatase inhibitor in a trial of 724 women, and the combo slowed progression of metastatic breast cancer by four months, compared with the aromatase inhibitors alone. "These results establish a new standard of care for this group of patients," Dr. Gabriel Hortobagyi, professor of medicine at MD Anderson Cancer Center and lead author of the study, which was presented at the conference and published in the New England Journal of Medicine, told Medpage Today.
Until now, treating advanced breast cancer has been a game of catch-up, in which doctors cycle through all available hormone therapies in a desperate attempt to stay ahead of the disease. But the latest results suggest that patients may be able to get off that treatment treadmill by adding everolimus, which targets a pathway that cancer cells need to survive. Overall, women getting everolimus had seven months with no disease progression, compared with three in the group that did not get the drug.
Because neither drug combination is yet approved by the Food and Drug Administration for use in treating breast cancer, and pertuzumab is still experimental, additional studies will need to validate the results and show that the drugs can extend survival of patients longer than those that are currently available. Another catch: the drugs are likely to be very expensive, up to $10,000 a month, the AP reports.
Doctors are hopeful that confirmation will come soon. Regarding the everolimus trial, Dr. Vered Stearns, the co-director of the Breast Cancer Program at Johns Hopkins University, told Medpage Today: "The superiority of the combination is statistically and clinically significant and I anticipate that will lead to approval and clinical use within a year or less."
Alice Park is a writer at TIME. Find her on Twitter at @aliceparkny. You can also continue the discussion on TIME's Facebook page and on Twitter at @TIME.
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These are some of the pertuzumab studies:
This one included locally advanced, inflammatory or early stage HER2-positive breast cancer, and looks like the patient pool was 200-300:
NCT00976989 - http://clinicaltrials.gov/ct2/show/NCT00976989?term=pertuzumab+early+breast&rank=5
This one has a patient pool of 69 and started this past January for metastatic patients:
NCT01276041 - http://clinicaltrials.gov/ct2/show/NCT01276041?term=pertuzumab+early+breast&rank=4
This one is no longer recruiting and included early stage patients, for a pool of between 100 and 500 patients:
NCT00545688 - http://clinicaltrials.gov/ct2/show/NCT00545688?term=pertuzumab+early+breast&rank=3
This one has an enrollment of 96 and just started in October, 2011, and allows locally advanced patients:
NCT00999804 - http://clinicaltrials.gov/ct2/show/NCT00999804?term=pertuzumab+early+breast&rank=1
A search of clincialtrials.gov for "breast cancer and pertuzumab" showed 16 trials. The study that is in the news "tested the combination in 808 women from Europe, North and South America and Asia and found a 6-month advantage in how long the cancer stayed stable. All women also received a chemotherapy drug, docetaxel."
I am still trying to find another study mentioned that has more participants, "Another study is testing pertuzumab in 3,800 women with early breast cancer."
-AlaskaAngel
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Interesting comments on whether to do scans for early breast cancer. I am scratching my head to why my oncologist then order a PET scan and mri brain scan. Perhps, it could be that It's been 4 years since first dx and maybe there was a small idc not detected that could have migrated??? Or, it will be soon be 3 months since biopsy and she wants to make sure it hasn't spread??? Like Beesie said if it did move beyond the breast 3 months isn't going to tell us if it has or not. It takes a year or two for it to show up on a scan.
My oncologist also noted when looking at my mammo pictures and mir (not sure which pic) blood vessels going in and out of the tumor. She said after surgery they will know if they got all the vessels of the tumor...not sure if I got that right.
I highly doubt the PET scan or mri will show anything unless it was there long before the recent dx. I hope the recent PET scan would have made it clear if there was mets so as to see the need to proceed with the herceptin or not. How do you know in the future if the cancer has spread beyond the breast? My hopes is that after my mx that pretty much the cancer journey is over...except for the 1% risk for recurrence.
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I didn't realize Her2 was supposed to be more aggressive in premenopausal. I'm 44, had hysterectomy 4 years ago but I still have one working ovary. Was planning on talking to obgyn about whether or not I should go ahead and have that ovary out too after year of treatment is over. I am scheduled to be on Tamoxifen for 5 years.
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Eve - where do you get 1% of recurrence from?? for your size tumour it is at least 23% chance of recurrence maybe more, given you seem to have LVI.
It's standard practice here in Australia to do chest xray prior to surgery and CT scan and bone scan after surgery - even for early bc patients.
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Alaska-the protocol for the trial, if I remember correctly, is 850 twice a day for a total of 1700.
I am 55. Was not in menopause when this started. Was thrown into it during chemo. Now on tamoxifen. I just had a full hormone panel workup and it is all sucked out. -
Susie, the 1% risk are for those who have mastectomies. If you remove your breast my bs said there is only a 1% chance of recurrence. If the cancer has spread beyond then it's 24% recurrence risk. I don't know yet where I stand...not until surgery, sn removal and scan reports. I hope the mastectomy will take care of my cancer problems once and for all.
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Evebarry The 1% recurrence rate only applies if you have DCIS and a mastectomy. For IDC, a mastectomy does not lower our recurrence rate to 1%. I was told my my MO that if I had a lumpectomy vs. mastectomy the recurrence rate would be almost the same (somewhere around 20% with the mastectomy having a 1% advantage over the lumpectomy). My MO tells me that chemo/Herceptin/Tamoxifen then cuts that number in half again so I'm left with approximately 10% or less...I don't think those of us with IDC can ever get our recurrence down to 1% unfortunately.
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Eve - your surgeon is totally wrong. HER2+ve bc (mastectomy or not) has a recurrence risk of 23% for small node negative tumours. HER2 is exceptionally agressive.
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