ATEMPT Clinical Trial - Roll Call
Comments
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p.s. to Tuboss: I want to clarify that the oncs at DF and SK completely rejected the idea that I needed the AC chemo. Do you feel you're in a different situation because your tumor is in the 1-2 cm range rather than 1 cm or lower? In fact, I thought that the TDM1 trial was restricted to 1 cm or lower, but it seems like very good news that you have been offered it even though your tumor is 1.7. (It's still tiny--you're still in the category of LUCKY to have found it early!)
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Thank you Isabel. After all my reading about the drugs and reading some of the participants experiences who have gone through the trial or who are still going through it, I have decided to select the trial. Hopefully I will be in the 75% portion of the trial.
I'm glad to hear you also had a good experience. I haven't heard any real negatives.It certainly pays to do the research and seek out various opinions from more than one oncologist, at least it did for me and it seems for you too.
I'm so appreciative for this thread.
Thanks again,
Trisha
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Isabel in response to your PS the trial is open for stage 0 and I. And yes I do believe I was very lucky to have it caught early. In Feb 2015 I had no tumor and when I had a mammogram six months later I had a 1.7cm tumor. So yes I was blessed.
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Tuboss, happy to hear you've made a decision. Let us know how it goes.
You may have read my earlier posts about the one problem I did have on the trial--I had to end after 7 months because of a low platelet count, so I finished out the treatment year on Herceptin only. I was an outlier then and I believe I still am now--other women have had somewhat depressed platelet counts but nothing serious. So I don't think you should worry about this, but I just want to be clear that this problem occurred. My onc felt I had had plenty of chemo for the 7 months, so I was not worried about stopping, and again, I have never regretted my decision for a second.
Incredible that you had a clear mammo 6 months before the tumor was found. My diagnosis odyssey began with a benign cyst--in the opposite breast from the cancer!
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Trisha: Welcome to the group (I hate to say welcome as none of us really wants to be here, but you know what I mean!) Those of us that are ahead of you in the process are here to answer any questions you have. I hope having made the decision will help you sleep better at night! Please let us know when you find out what group you are in. Good luck!
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Hello everyone... Today I am 6 weeks out from the last infusion. Nails are growing better and stronger. The watery eyes and runny nose are behind me! Port incision healed enough to get back to the gym....
How are you doing?????? Maggie
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Hi Maggie, happy to hear you are doing so well. I am one week after my last rad and my skin is looking normal again. My #8 is next Thursday.
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Maggie--great progress!
I have my six-month checkup this week in Boston. (Every six months for the first two years, then yearly for three years--I think that's the schedule.) Only thing that worries me is my platelet count, as it has yet to be a normal reading. Now that I'm just under a year and a half out of treatment, it would be really nice to get a normal number.
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Happy New Year to all my ATEMPT sisters, and welcome, Tuboss, I hope you keep posting on the site! Did you find out which arm you're in? I do remember that waiting as a stressful time.
I think I am probably the most recent person to join this site before you. I'm here at Dana-Farber just finishing infusion #4. I am in the TDM1 arm of the trial. I would have been fine with either, as both treatments seem excellent, but I am glad to be keeping my hair.
I have a question for the group: It's my understanding that the protocol of the trial is to see the oncologist only every 3rd infusion (every nine weeks) after infusion 5, and to see the trial nurse every time. My oncologist has told me she's happy to continue seeing me every time if I prefer, that some of her patients do that. Did anyone continue to see their oncologist every time after #5? I really like my oncologist and her nurse practitioner, but am sort of lukewarm on the trial nurse. I know it takes more time, but I think I might feel better continuing to see one of them as well as the trial nurse.
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Serenitysis - I have been meeting with my Oncologist before every infusion (#8 is on Thursday) to talk about my blood test results, any side effects I am having and to answer any questions. The trial research coordinator stops by during my infusion to ask questions and to see how I am doing at every other infusion. I prefer to see my Oncologist at every visit.
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My oncologist was there for me every time during the four months I was on TDM1. I went to Herceptin only after that because of persistent and worsening neuropathy and weight loss, and at that point I sometimes saw the nurse practitioner.
I feel blessed to have been in this trial, and they will follow me for five years, just like they will for all participants. My oncologist still sees me every three weeks except for twice with the nurse practitioner.
This is a groundbreaking study and those participating are in good hands. What they learn from you and me, no matter which arm we've been selected for, will help doctors save lives with the least amount of hardship for women with breast cancer. The trial gives us a reason to be proud that while in treatment, we are also doing something important for others. So glad to see you all on here as I've sought encouragement and support from others who understand.
Susan
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Thanks for the updates!! Susan, so good to hear from you!
Who did I see? I alternated between my MO (every 3rd) and her NP for the last 5 months of infusions. There were several times I saw both (not on a 3rd infusion visit) when there were issues to be addressed. I had breast exams at each visit. Don't think the trial nurse would have given me a breast exam! Sunny, cool morning here on the coast. Hope your day is a great one!
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SerenitySis and everyone-- I have been trying to figure out how often I saw my onc during my treatment year. The truth is I can't remember, so I think this means two things: (1) I must have followed whatever schedule the trial determined. I was lucky in that I had a wonderful trial nurse--she was like my psychologist, cheerleader, and friend. If I had not had that relationship, I too might have wanted more meetings with my onc. You should do whatever feels best for you--absolutely see your onc if that's what you need. And (2) When you're 1 1/2 yrs out of treatment, as I am, you start to forget the details, because life goes back to normal! Something to look forward to. :-)
Susan, I agree with everything you said!
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Thanks to all for your replies. I'm going to talk with my MO about it at my next appointment on 2/2.
IsabelArcher, thanks for letting me know that post-treatment you're actually beginning to forget about it. I've been in a "fear of recurrance" slump this week due to something I heard about someone else, so I'm trying to figure out how to better keep it in the day & focus on my treatment for now. Easier said than done
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I met with my MO this morning and we discussed taking Tamoxifen for the next 5 years. My platelets are 111k so no worries there. I just finished with #8 and will be leaving soon. This process is getting quicker each time.
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Hi all, I had my six-month checkup yesterday and all is well. No mammo, just breast exam and bloodwork, chat with nurse and doc. My platelets are normal (or very very close to normal--146K, with bottom of range of normal being 150K) for the first time in 2 years, so I can stop worrying about that now. Found out that I will be seeing my onc every 6 months for the whole time I will be on hormone drugs (right now Tamoxifen, then switching to aromatase inhibitor probably after 3 yrs of Tamoxifen).
SerenitySis, the fear of recurrence thing does come and go. I don't know how any of us could banish the thought from our minds. Since the end of treatment, I have been in a very good frame of mind and do go for long stretches without thinking about stupid cancer. I have been truly enjoying every day of my life. But at times something creeps in--and my thoughts go to bad places. I don't just have fears of BC recurrence but having other kinds of cancer. At my checkup yesterday, I was a nervous wreck. Blood pressure up, trips to the bathroom etc etc. (Mammos are incredibly stressful since diagnosis--hate them.) So yes, for sure, one has to work incredibly hard to manage the panic. But I believe the single best thing you can do is tell yourself this: Don't waste time worrying about things you can't control. Don't waste a minute of the days of your life. Yes, we might get cancer again, but we'll face that challenge then. Today, I can't do a thing about what might happen down the road. I want to love where I'm standing right now, so I do.
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Isabel, congrats on your "all is well" six month check up. I agree with what you said to Serenitysis. We can't worry about things we can't control. Well said
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Congrats Isabel on another good six month checkup! I had my one year from treatment start clean bill of health in December. I agree with all you said - well stated!
Unfortunately that inability to predict the future just hit me in a different way. My best friend since childhood, who visited several times from Texas and supported me all the way through my own cancer drama, just got diagnosed with Stage 3 ovarian cancer. Not the type of bad news either of us imagined. Worrying would not have prevented anything and fortunately neither of us knew to worry about her. But the whole time we were worrying about my cancer, she likely had cancer cells growing inside her. And now she'll have to plough through treatment and I'll be there for her. Stupid, stupid cancer, as they say.
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Ozoner- wow, you gals are trailblazers. Thank you! Can we still get in on this trail?
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HappyHammer - the trial is still accepting participants, but you are already well into treatment! You'll have to find a different way to trailblaze :-)
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TTFan....thank you for letting me know....how can you get into a trail?
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The best bet is to ask your medical oncologist, they are usually the ones to refer you. Since you are already getting treated, you wouldn't be eligible for treatment trials any more but there are also trials looking at ways to reduce risk of recurrence after treatment as well as some that look at ways to deal with lingering side effects. I even saw a couple that were just symptom questionnaires to gather information about how treatment affected people. Not anything that can help you as an individual, but could help others down the road. I'm glad you are interested in supporting breast cancer research! If you want to learn more, you can go to breastcancertrials.org.
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Thanks for the good wishes!
TTfan, that is very distressing about your friend with ovarian cancer. Believe it or not, the same thing happened in my world last week--a colleague of my husband's was diagnosed with Stage 3 ovarian. So many people whom I know or who know people I know have been diagnosed in the past couple of years. It's been dizzying. It seems like all the more reason to me to live all you can, seize the day... right?
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Sorry to hear about your husband's colleague Isabel. As my partner pointed out, we are getting older and so is our circle of friends. This will only keep happening more as time goes by. Sort of depressing, but also makes "carpe diem" all the more imperative!
So as part of my carpe diem plan, I am thinking about training for and hopefully doing the San Francisco Avon 39 walk in July. Anyone know anybody who has done one? Anyone want to participate and join me? We still have 6 months to train!
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I can relate to you both, TTfan & IsabelArcher, and I deeply sympathize. In August of 2013, my younger sister was diagnosed with Stage 3 ovarian cancer. Because OC has so few symptoms, it is most frequently Stage 3 by the time it's diagnosed. There was no previous cancer in close family members.
I have been her primary caregiver for the past 2 1/2 years, as she is a single mom with 2 teen boys and I am her only family here. She went through surgery & the first round of chemo, including losing her hair, was in remission for one year, then had a recurrance, putting her in Stage 4. This past May, in the 2nd month of round 2 of her chemo, I was diagnosed with breast cancer. We do not carry the BRCA gene. She finished her treatments in September and is again in remission, thankfully. In spite of my having four surgeries in 4 months, I never missed her treatments. I started on the trial in November. The first time I sat in the treatment chair and she was in the visitor chair was surreal. We are the cancer sisters now. We do our bes to appreciate every single day. You just never know. Stupid stupid cancer.
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Serenitysis--It is very distressing to hear about your sister. In your words "cancer sisters" I hear the kind of black humor that has helped me along the way. Sending you strength and peace, wherever it can be found.
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Thank you, you too. It's good to laugh in between the occasional cryingfrom being overwhelmed. My sis & I tend to find a lot of stuff really funny these days, even on treatment days. What else can you do?
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Oh yeah, I hear you. I was developing a whole breast cancer standup comedy routine the summer this all started.
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Hi HappyHammer! Just saw this for the first time. As Isabel/Archer, TTfan and others mentioned, this particular trial may exclude you, but your oncologist may find something just right for your situation. Great attitude like yours will take you far!
And, as the others were saying, it's natural for some days to be interrupted by thoughts of stupid cancer. When I started on Aromasin estrogen blocker, I started aching in joints and muscles,and then my right hip started hurting around Christmas. Worry clouded my days when pain continued for over three weeks, but thankfully now it's mostly gone. So now I joke it was a tango injury to deflect my ever vigilant, worrying mind.
The humor part does help during this surreal time, doesn't it? Isabel/archer, I think you should test drive your comedy routine on us as the inspiration comes!
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Okay, just freaked out today when I got a letter from a radiology office that said they have recommended a biopsy because of recent breast images. They said they had notified my doctor and I should contact her for the biopsy.
Upon further reading, I discovered the "recent" mammogram to which they were referring was taken January 28, 2015! My brief confusion was partly because I had a bone density scan and an ECHO with them a few weeks ago.
- I called the office and they were very apologetic when I told them about the date of their mammogram and that I'd had several biopsies, a lumpectomy, chemo....
Turns out the letters are automatically generated and they would talk to the woman who sends them out. Now I just need to glean some humor from the situation!
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