ATEMPT Clinical Trial - Roll Call
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A quick update. I had my first infusion of TDM1 yesterday. All went well and I feel fine. I slept really well last night! The day was long, lots of waiting around, and I was very surprised by the setting - I had a private room with a bed. I guess my image of a bunch of people sitting around in a big room with lovely nurses passing around hors d'oeuvres is just a hollywood myth! (Well, I didn't really expect hors d'oeuvres, but I guess something a little better than saltines!) I'm glad I brought myself lots of healthy snacks. Anyway, food aside, the experience was fine.
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Checking in... Finished #12/17 last week. Liver indicators down again, sort of a sin wave setting up, so no concern looking forward. Off and on fatigue is a reminder that I'm doing T-DM1, though at gym every week. Back with personal trainer with semi-challenging strength training; semi-challenging compared to this time a year ago. (ok... have to accept it takes time to come back).... My wonderful ATEMPT research nurse at UNC moved UP to a new challenge; amazing how important our support team becomes during this "voyage". Have stopped Prilosec (hated the SEs, but glad it stopped the acid reflux) and back with Pepcid for a few more weeks until nada, nothing - thanks TTfan for the support.....
I have 5 more infusions scheduled with a finish just before Thanksgiving. At my request (and agreement to $) a tissue sample was sent to Foundation Medicine. I want to know if my Her3 is over-expressed. Research presented at the 6/2015 ASCO meeting showed that 10% of the Her2 over-expression group also over-expressed Her3. Data seems to show Perjeta is important for the 10% with Her3 over-expression. ---> Need to add here -- research data doesn't include a multi-year look at T-DM1. <- At the present given no additional insight, I equate herceptin and T-DM1 in terms of how the receptor sites are blocked. So I am waiting the Foundation One test results. If the Her3 is ok, I'm done and the chemo bag gets retired!
Have to admit last year I planned an amazing vacation to Zion, Bryces and the Grand Canyon to begin this week. After rads it wasn't worth a gamble (for me). So my better half and son have arrived today in southern CA for a tuna fishing adventure. and I'm thrilled to be home.....
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I think I am starting the trial next week. Just have to get an echo and labs. So of course I do not know which arm I will be in.
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Hey Isabel,
Regarding how people react: I'm pretty open with everyone, but was floored when this new woman said after book club: So, how are you doing with cancer?
I mean, what do you say to something like that?
Checking in: I've lost about 23 pounds on Kadcyla and the MO said I need to stop losing because it's coming from muscle tissue. So I don't know what's happening. They cut my dose for #5 and #6, and I felt great last week but am fatigued and nauseated this week. I tried whey protein drinks and bars, but now I'm counting protein and trying to get enough every day.
But I've got a family get-together and a short trip to Pigeon Forge before I start rads, so I'm anticipating the upcoming weeks with gusto. Hope you are all well and have something to look forward to every day.
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Hi there. For people who have done TDM1, how was radiation? Did it make symptoms much worse?
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Laura - If you look back to my post in early April, made a few comments about the impact (try page 6 )... I had digestive issues similar to acid reflux after the overlap of chemo and rads. I can't say whether it was due to that or not. Made some recommendations in that older post. If you have a regular exercise schedule try to stay with it as much as possible. Hope this helps...
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Hi there, just reading all the posts. Thank you for all of your comments. I am seen at Dana Farber Boston- so lucky to live near the best in care. I tried for the TDM1 trial, but just learned on Wednesday, that I fell out into the standard of care group. Like you TTfan, I will stay with it, as the research is important to be done. Thank you for doing that.
My first chemo herceptin tomorrow 8/14/2015. Loading up on steroids? never take ANY meds. TTfan, I am not thrilled that I am in the fall out group. Not thrilled to spend next yr of my life doing this, as I don't feel like I am dying of cancer. So, like you, next for me is 12 straight Fridays of Chemo/Herceptin, then 6.5 wks Radiation (5 days/wk), followed by herceptin for a year (every three weeks). My Onco is Dr. N. Sinclair. She's very good.
BRCA test negative even with strong family history of many cancers, and just for breast ca.- Lost my grandmother dead age 51, sister dead age 49. My lovely sister Cindy survived 12 good years of life with care by Dr. Ann Partridge of DFCI. Cindy was dx. age 37, IBC, HER2+++. Cindy was one of the original Herceptin trial contributors. I am grateful to her work on that trial, and the fact that Herceptin kept her alive for 12 good years. Cindy continued her studies in grad school at Simmons College to earn her MSW, all while fighting cancer. There were many ups and downs, but she always stayed positive. I envy her courage. She worked tirelessly for disabled veterans at the Soldiers Home in Chelsea, MA, and they are sore to have lost her unbridled spirit and dedication to all the Vets there.
Cindy lectured at Harvard Med School Residents and Interns a number of times to emphasize and explain to them to look for the symptoms of IBC and to treat promptly. IBC is so often misdiagnosed.
It was an honor for my 2 other sisters and I to provide hospice to Cindy in our parents home last June (2014). Lost my own wonderful parents in just the last 3 months, a true love story 59.5 years of marriage. I feel I could pass for a medical doctor having been health care proxy for my sister and parents over all these years.
For me, I am in a very low place now, pretty down. I do not have Cindy's positivity. How I wish I could talk to her now.
.http://www.legacy.com/obituaries/wickedlocal-wenha...
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dsmc69- I am so sorry to hear all that you have been through with your family members. I am sure you are well versed in oncology and are well prepared for the year ahead of you. I have the same treatment plan as you do (treated at MGH), but will also have Tamoxifen added when I complete radiation. I just completed my Herceptin/Taxol and am going for my radiation mapping today, with rad starting on 8/31. I wish you all the best today and during these next 12 weeks. If you are looking for any local support, there is a thread for Massachusetts, but I have not connected with anyone yet. There is also a weekly Taxol group here as well that I found helpful to read about people who were ahead of me, or finishing up, as I was getting started.Take Care!
Kerry
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Thank you Kerry. I have appreciated reading yours and everyone's posts. SO helpful. Are you having whole breast radiation? I am concerned about RT on left side- heart and lung. Herceptin heart issues. And I was a long time smoker until recently. I have heard there is targeted radiation they tell me will avoid heart and lung with lasers or something. How did you come to your RT decision?
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DSMC69 - My 2 cents on your question....... I looked into targeted rads and ended up with the breath-hold method to protect heart/lungs. My RO convinced us with this type of cancer, even caught early, called for full sweep with detailed mapping of the rad fields prior to treatment. Have a discussion with the most respected RO at Dana-Faber about the options and research findings supporting each.. Maybe you noticed my several postings on genetics/genomics in this thread... There's something going on that isn't BRCA. Reading your family history reminds me how little we know at this point. Consider sending TTfan a private message. She's a big help, especially will be for you. Maggie
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Hi all - life has been crazy busy, but in good ways! On August 22 one of my sons will marry his girlfriend of 6 years who we love dearly! Six east coast relatives will be staying at our house and we had the bright idea that we should replace the carpets and paint upstairs before they came. Before sanity had half a chance of kicking in, we did it and now have a week to go from absolutely everything taken apart and in boxes to being ready for guests and wedding! And I'm back at work - what was I thinking?? So, the news you all will appreciate is that I now wake up thinking about something other than breast cancer. I had wondered when that might happen. I still get reminded many times a day, whether for reasons in my own body or radio ads or questions, but it's no longer the overarching occupation of my brain. Yayy!
Tinydancer - we haven't heard from you - did you go with the ATEMPT trial? What treatment are you getting?
Laura - glad you are past the waiting stage and on your way to completing this job!
Isabel - hope you are having a fabulous vacation and please always remember how much we appreciate our "pioneer" sticking around to guide us and give us hope for a more normal future!
Ozoner - you are powering on! You have come so far now! Have you asked about the shorter RT version (slightly higher dose for 3 1/2 weeks vs 5 or 6 weeks)? I see it in the medical literature lot these days, and it appears to be comparable efficacy with fewer side effects. I breezed through it quite easily; it's definitely worth asking the RO about. Mine offered it without my asking, it's becoming standard at Kaiser for early stagers.
Kerry - I am so sorry to hear the neuropathy hit you so hard. IMHO you are making absolutely the right decision in stopping now. My MO has said all along the RT and the hormonal treatment is really the crux for Stage 1 triple positives. The T/H is really "icing on the cake" - her words not mine. While for me it was certainly do-able it sure didn't feel like icing or cake!! Please keep us posted on how you are feeling as you get further out from chemo. They will continue the Herceptin right?
dsmc - I sent you a PM but wanted to say I hadn't seen your post here when I responded. I am so very sorry to hear about Cindy and your other relatives! I can't imagine how much harder this must be for you with all of the grief and difficult medical memories! My guess is that this is close to your lowest point - the whirlwind of diagnosis, selecting treatments, getting the arm you didn't want - yowsers - of course you feel down! I cried the day I found out what arm I was in, but as I said in my PM to you - my thinking really changed with time. In regard to the RT - I also had a left sided tumor and got whole breast RT with breath holding like Maggie. They say they were able to completely miss the heart and lung in the RT field. Despite the higher daily dose (tradeoff for fewer days) I had minimal problems - I have had far worse sunburns!
and Maggie - so good to get a progress report from you! Hope your acid stomach problems are fading fast and that your energy is coming back post RT! Keeping fingers crossed you are HER3 negative! I don't think I'd be brave enough to want to know at this point. We are almost infusion twins - my last Herceptin is scheduled for November 12! So barring further medical misadventures I'll be done before T-giving as well.
Love and hugs to all my trial and non-trial sisters!
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I am still waiting to find out which treatment I will be getting.
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Interesting abstract from Practice Update
THURSDAY, Aug. 13, 2015 (HealthDay News) -- Multigene testing for hereditary breast and/or ovarian cancer (HBOC) identifies more mutations that are likely to change clinical management, according to a study published online Aug. 13 in JAMA Oncology.
Andrea Desmond, from the Massachusetts General Hospital Cancer Center in Boston, and colleagues conducted an observational study of patients from three large academic medical centers. A total of 1,406 individuals who were appropriate candidates for HBOC evaluation and who lacked BRCA1/2 mutations were enrolled prospectively.
The researchers found that 40 BRCA1/2-negative patients (3.8 percent) harbored deleterious mutations, most often in moderate-risk breast and ovarian cancer genes (CHEK2, ATM, and PALB2) and Lynch syndrome genes. Most of the mutations (92 percent) among these and an additional 23 mutation-positive individuals enrolled from the clinic were consistent with the spectrum of cancer(s) observed in the patient or family, indicating clinical significance. For most (52 percent) of these 63 mutation-positive patients, additional disease-specific screening and/or prevention measures beyond those based on personal and family history alone would be considered. Based on potential management changes for mutation-positive relatives, additional familial testing would also be considered for those with first-degree relatives (42 of 58).
"In a clinically representative cohort, multigene panel testing for HBOC risk assessment yielded findings likely to change clinical management for substantially more patients than does BRCA1/2 testing alone," the authors write.
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Here's another abstract, looking at a different group of mutations.... Suggested continuing to look at one of the pathways but didn't go as far as the one I posted above ( ie suggesting clinical management implications)....
In conclusion, the present study documents an approximate 30% frequency of PIK3CA mutation in HER-2 positive tumours from patients with breast cancer, treated in an adjuvant setting, whereas K-RAS and BRAF mutations were non-existing or rare, respectively. The mutational status was, however, not related to any clinico-pathological variables or recurrence-recurrencefree survival. The size of the studied cohort is limited, but the results obtained from the descriptive study, corroborates the controversies stated in the literature regarding the clinical impact of PIK3CA mutation in patients with breast cancer. Future studies should focus on an integrated approach, taking into account more members of the PI3K pathway, focusing on their interplay, in the attempt to elucidate trastuzumab treatment failure in patients with HER-2 positive breast cancer.
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"A Randomized Phase II Study of Trastuzumab Emtansine (T-DM1) vs. Paclitaxel in Combination With Trastuzumab for Stage I HER2-Positive Breast Cancer (ATEMPT Trial)"
Does anyone have information about the Phase I Study?
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I was told there was no phase 1 trial for this. Phase 1 assesses safety - since tdm1 is already FDA approved for stage 4, a phase 1 trial was not needed.
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Hello all, I'm back from a glorious 9-day vacation up and down the California coast. Wow, do I love California.
TTFan--congrats on your son's wedding! And I am thrilled that you have reached the point where you're not thinking about cancer every day (or at least not every hour!).
dsmc69--It's very good news that you are BRCA-negative. I'm so sorry about the family members you have lost. My mother died of BC in 1994, but I too tested neg. for the BRCA genes. You said in your post that you feel very low and lack your sister's positivity. I just want to encourage you to go forward as though the treatment is a job. One day at a time, get the job done. You can do this--and you have an excellent prognosis, so there is much to be thankful for. It's one of the oddest things that we get cancer and yet can consider ourselves lucky (for being stage 1, for living at a time after Herceptin has been developed and tested and proven to be effective, etc.). I think you have to allow yourself to feel depressed, fearful, and just generally torn to shreds--heaven knows I was there the summer of my diagnosis--and then you find a way to pick yourself up and embrace every day of your life.
Ozoner--About your weight loss: has anyone recommended loading up on carbs? They really do pack on the pounds. Whatever appeals to you--pasta dinners, with bread, and ice cream for dessert? Carbs helped me with my TDM1 queasiness, too. On the topic of how people to react to us as women with cancer: My 85-yr-old mother-in-law was 100% unable to talk to me about it after my diagnosis, and she remains that way now. My husband tries to bring it up--as he says, cancer is simply part of our lives now--but her face goes blank. She has barely been able even to say "how are you doing?"! So at least the woman in your book club made an effort!
...even though it was a dumb, insensitive way to approach it.Laura61--glad your first infusion went well!
Haven't heard from Mom2Three in a long time on this thread. Has anyone been in touch with her through private message?
To everyone new and not-new--trial, off-trial, TDM1, and Taxol--I send you my best. With TTFan's encouragement (thanks for your kind words), I do plan to stick around here to offer an example of post-treatment life. It's almost a year since I finished. I don't think about cancer every day, and I feel great and enjoy life. In dark moments it may seem like you will not get there, but I promise you that you will.
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I just learned that I will be starting treatment on Thursday with TDM1.
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TinyDancer, glad to hear you've been assigned to the TDM1 club. Good luck on Thursday.
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I had my first TDM1 treatment today. 1 down 16 more to go. It was a long day but I feel fine. I had my own room, a relaxing Reiki hand massage, a lovely lunch and a team of wonderful nurses taking care of me. So far, it has been a great experience.
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#13 tomorrow....
Ozoner... sending good thoughts your way for an easy rads experience.
Laura and Dancer.... waiting to read how things go for ya'll...
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Good luck MaggieCat! My second infusion is Wednesday. So far, so good. I feel 100%!
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Laura61, that is really good to hear--SE-free!
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I feel pretty good, so far. My second infusion is on Sept 11th.
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Having my first TDM1 infusion tomorrow. Feeling good about it.
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Wabals - good luck tomorrow.
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#13 done.... Liver numbers up a bit again from last time ( staying under less than 1 1/2 times upper normal limit, so not at all a concern)... No levels at the worst found, which was either the third infusion or the infusion that overlapped with rads... Results back from Foundation Medicine... I am NOT Her3 over expressed (YEA!!) ... given the genetic changes they found the first drug on the recommended list is T-DM1..... Guess I hit a home run getting into this trial and Arm 1!!!!
Feeling pretty good at the moment... and for those earlier in this journey, I'm feeling optimistic for you...
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Wabals... you had lots of tests to determine Her expression. Guess it resolved?? Any insight on what was going on? Good luck tomorrow.... hopefully just an extra 30 minutes of observation - Day 1 protocol - and you are out of there!
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MaggieCat, Hooray about the good results!
TinyDancer, so glad to hear you're also feeling good so far (in addition to Laura61). I am very, very glad to know that there are indeed some women who have minimal (or no) SEs from TDM1. Even though I had some SEs, I'm excited about this drug and the whole class of biologics.
Wabals, best of luck to you!
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Hi all. I had my CT scan and the creation of my body "frame" created on Friday, plus initial marks covered in plastic tape. Didn't realize no hot tub or pool!
So, going back for the initial run through next Tuesday and then rads starting Wednesday. They do an X-ray before each external radiation treatment. Unfortunately they don't do breath hold there, but the positioning gets the heart out of the way.
I cancelled my drive to Dollywood, which is good because I need a rest. I thought I would be unfazed by all this, but I will probably take a chill pill before the next appointment.
Congrats MaggieCat on your test results! You guys are great cheerleaders as we take on each portion of treatment. You relieve the fear and uncertainty, and for that I am so grateful.
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