ATEMPT Clinical Trial - Roll Call
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Kerry, I was 51 at diagnosis (53 now). I was perimenopausal--very irregular periods, hot flashes, etc. Once I started the TDM1, my period never came back. We'll never know if it was a coincidence or if the drug pushed me over into menopause. Of course now I have continuing hot flashes because of the Tamoxifen, but they have eased up quite a bit, I'm happy to say.
And to everyone, what a great thing it is to have each other to "report" to and sound off against. I agree with Kerry that no one who has not received a cancer diagnosis really understands what we've gone through/are going through. I have a marvelous set of caring friends, but I sense they are a little afraid of asking me the wrong questions,when sometimes all i want to do is talk about all my experiences and fears. And I think unfortunately those of us with BC come to represent other women's worst fears, so they treat us as somehow both special (brave/courageous/amazing/great attitude/etc etc) but also dangerous (oh no, if this could happen to you, it could happen to me...). It's not their fault--that's just how it is.
As for TDM1 SEs, I do wonder if those of us who had them were more inclined to look for this forum, which would make it seem like there are in fact a lot of SEs. I know that's why I searched for it--I wanted to know if other women had had a low platelet count. Women who are sailing through the TDM1 year may simply not turn to the Internet for support, because they may not need the support? In any event, I know I've said this a 1,000 times, but even with my SEs, TDM1 did not interfere with a single day of my life, and for that I'm grateful.
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Isabel- thank you and I share your thoughts exactly. My friends and family are wonderfully supportive but I know they are shocked to see this happen to me. I am a nurse, take great care of myself, no family history etc... and it produces a fear in them which I completely understand. This disease is so random- my life was sailing along perfectly. I have a great job, a happy marriage, I was going to return to school for a graduate degree as my children left the nest and this has stopped me in my tracks and it is shocking for all those who are close to me to watch me go through this. I also agree about the fact that we only know for certain about the TDM1 SE by those who are reporting here. I haven't yet gotten into the infusion clinic to learn more about others here at MGH who may be in the trial. I will be asking soon though and encourage anyone I meet to join us here!
I hope everyone is having a good day today!
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Kerry - The cycles, "a series of events that are regularly repeated", for this clinical trial are three weeks in length. Each infusion date has a "cycle identifier".. And yes, taxol is weekly. Think dosing stays the same based on body weight....
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I enrolled in the trial! I don't think I would have done it if not for the information and encouragement I received here. I think it was only after talking with women who have been there and understand the elements of the decision that I was able to process everything. My MO was very encouraging about the trial, but it meant more to me to hear from other patients. I learned that there are currently about 35 patients here at MGH enrolled in the trial. I hope to meet some of them. I will find out in about 10 days which arm I get and my first infusion is scheduled for May 14. Will certainly continue to post...Many thanks to everyone here and I hope you all are having a beautiful day.
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Kerry, glad to hear it--and either way (TDM1 or TH), you will be getting some good juice to zap the stupid cancer.
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Congratulations Kerry! It must feel good, even if a little scary, to have made a decision. Fingers crossed you get whichever arm will turn out best for you in the end. And either way you will have support and empathy here and elsewhere. Keep us posted! And do recruit to the thread, it would be interesting to hear some more experiences.
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Kerry - Thanks for the update.... You've made a big decision, signed up and now I assume a week of testing ( echo, confirm tissue type) and then the lottery! Do try to get some of those 35 to share their experiences here. Reflected on my ~ 3 weeks between signing up and the computer assignment while in to have my hair colored yesterday. Once again talked about the contingencies we made for a late December hair cut if I had been assigned Taxol. I was ready for either... and really ready to be moving forward!!!!! Think I've read others expressing much the same feelings... Maggie
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Hi all! I'm feeling my old frisky self this week, so if I just have a few low-profile days each month, I'll be eternally grateful.
Went to a jewelry party and met a 44 yr old woman who was treated 16 years ago for HER2+ cancer w adriamycin--oh my gosh, so severe. We are so fortunate now to have effective treatments where we can continue w our lives. MaggieCat, I chuckled about the part where you had your stylist on hand if you would have been chosen for Taxol. I did that too, and then bought a wig and really jumped the gun, so I'm hoping I won't need it and can donate to the wig bank.
Kerryd, my breast surgeon and oncologist were very enthusiastic about the TDM1 trial, and although there are no guarantees, their professional opinion is that it is a drug of choice. My first infusion was without trauma, even though I was totally focused on every possible feeling. Who knew that constipation would be the worst part! I will definitely work to keep that from happening again.
I rested often the first few days, but went to a film festival the first day after treatment. I did light Zumba and took walks. BTW, if anyone needs a compression sleeve, lymphedemaproducts.com has a great selection. I got a purple Juzo sleeve and a hummingbird pattern LympheDIVA that looks wild and is not quite as soft.
First infusion was w no port. I hope the 3-wk intervals allow me to continue without one. We will see.
Oh, I'm not checking posts continuously, just every few days. It's great to know you're there!
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Ozoner, it is SO GOOD to hear that you're feeling energetic and basically fine. Your story about the 44 yr old who had Adriamycin 16 years ago...what jumps out at me is that she's here 16 years later, and she must not have had Herceptin, which didn't come into use till about 2004. And she was only 28 when diagnosed, which put her at high risk for recurrence... That is amazing success story! I love BC success stories!
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Hi all. Had my second infusion today, which was given in 30 minutes with 30 minutes of observation. Had 2 aborted tries at getting a vein, and they finally succeeded.
Told the onc that some of you had radiation at week 12, which he said is their plan also. I asked him about foreign travel (daydreaming!) and he said that wasn't advisable at this point. Dang! At least I can still fly to Maryland to visit my mom.
The woman in the next chair had terribly swollen lips, and I'm humbled by the experiences of the other people in the room. It helps to put things in perspective and feel grateful for every day of being able to carry on with my favorite activities.
Hope everything is well with all of you.
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Hi Ozoner, I also was advised against foreign travel while being treated, but I flew to CA (from here in NYS) in between infusions with no problem. The only thing I had to worry about was my tissue expander setting off alarms in airport screening (not literally, but I actually did carry a letter with me from my plastic surgeon explaining that I had an implanted medical device in case I was frisked!). You won't have to worry about that one!
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Those tissue expanders sound rough! My husband used to get mad because his titanium knees always led to extra frisking. Now the new scanners show the metal pieces just fine.
Feeling a little ookie today, but then I'll forget about it for a while. What a beautiful day to enjoy the birds and flowers.
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Ozoner-- "ookie" is the perfect word--that's how I felt on day 2-3 also. Not too bad, not too good. Just ookie.
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Ozoner - glad you continue to do well!
Kerryd - thinking of you and your first infusion today - what arm did you get and how are you?
Momto3 - havent' heard from you in awhile - how are you?
I had a minor complication unrelated to the study meds - radiation induced gastritis. I'm relieved to know what it is and am already getting better on acid reducing meds. I couldn't figure out why in the world I was having more nausea 2 and a half months after finishing Taxol than I ever did during the chemo. Apparently this is unusual but does happen due to some scatter of the RT with left breast radiation. Otherwise I am doing great - energy is almost back, hair is growing, about an inch long now and no more scalp showing through. The "pity looks" have mostly disappeared when I'm out and about. I'm hitting the gym again and other than the port reminding me every time I throw my purse over my shoulder, have long stretches of time where I can forget about cancer. My goal is to be healthier in Sept 2015 than I was when diagnosed in Sept 2014. I'm well on my way - body fat is down, lean mass is up. Best of all, I'm reconnecting with friends I was too busy to keep up with while working. I'm less stressed and working on my stamina! Now the trick is to see how well I can keep caring for myself when back to work next month.
Hope everyone is feeling well and enjoying life!
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Good Morning everyone,
Ozoner- happy to hear your having in there other than an occasionally "ookie" day... a great word that doesn't sound too intimidating... and has a positive spin to it!
TTfan- thanks for checking in. I withdrew from the trial. It was a decision I obsessed over for more than a week and it was driving me nuts. I couldn't figure out why I was not comfortable with it. I kept hoping that I would be put in the Herceptin/Taxol arm. I was nervous about the TDM1 and the liver effect- specifically for me as I have a benign liver condition where my bilirubin always runs high. My MO assured me I would be watched closely. But then when I asked about the participants at our cancer center who are on the trial I learned that many women are tolerating Herceptin/Taxol very well and some on TDM1 are too, but both have some side effects. Either way, we are fortunate to be in this category- both of these regimens are effective and easier to tolerate than others. Hair loss is a non issue for me- I typically sport a very short haircut anyway so for me it was not an important side effect to avoid. My MO said to me "If you are not enthusiastic about the trial don't do it" That was all I needed to hear and I withdrew and never looked back and never regretted the decision. My anxiety has reduced. So my first treatment was yesterday. I was a little anxious about having a Taxol reaction, but I felt perfectly fine- napped through the Benadryl and felt some fatigue for the rest of the day. Woke this morning feeling well.
I hope I can still be a part of this thread because I find this to be such helpful support!
Hope everyone has a great day and finds time get outside for a walk to enjoy spring flowers!
Hugs,
Kerry
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TTFan-- Prilosec to the rescue, right? I hope the gastritis clears up fast and never bothers you again.
May 2015 marks 2 years since my diagnosis. I feel great, I think I look pretty good--Frankenboob does the job--and though I do think about cancer, it's definitely not every day. I no longer feel the crushing fear and anxiety. My frame of mind has gotten better and better--I try to be present in my life every single day.
I have a checkup with mammo in July, so the anxiety will spike again--it always does when you walk into the mammo waiting room. Does anyone know what the time is from which you begin to count how many years you've gone cancer-free--does it begin with diagnosis date or surgery date or end of treatment? The medical research always talks about units of 5 years, but I don't know when it starts.
Kerry-- You followed your gut instinct, and that's a good thing! You sound strong and like you're on the right path. I had so many options I had to choose from--the trial in Boston, TH in New York, TH here at home in upstate NY, combination of two cities, etc. My instinct told me to do the trial in Boston, and this was right for me. You obviously researched everything and know what you're doing. Look forward to hearing how things go for you.
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Hi everyone! Been away for a while trying to get things under control here :-)
TTfan - good to hear from you but sorry that you had to deal with gastritis...ick. And here's to a healthier Sept 2015. Sounds like you are on your way!
Ozoner - You are moving right along & I love your positive spirit. Remind me not to ask before traveling overseas (if I get lucky and escape!)
KerryD - I'm happy you found the right path for you. So important to feel comfortable with your choices and none of us are quite the same.
Isabel - Celebrating the two year mark is reason to toast (albeit with a Virgin Mary here!). Don't know the official "date" we start counting from, but at MDACC they have signage here and there proclaiming "you became a survivor the day you were diagnosed". So, I think I will choose my diagnosis date when that time comes.
I've made it through my 4th T-DM1 cycle and continue to be the "problem child". This time my MO sent me to the ER for tachycardia. I also had it during cycle 2 (even worse as my heart rate was up to 160 but I was asymptomatic aside from that). This time it was in the 130s and I was weak, sweaty, with palpitations and had some shortness of breath so everyone got a little nervous. Stayed for observation for an additional day and have now had almost every cardiac test possible run. Cardiac panel was clear x 3 so no heart attacks and get this...my echocardiograms showed improvement in my EF. Baseline before starting treatment was 55 and now it is 67. After all my testing, cardiologist diagnosed me with Inappropriate Sinus Tachycardia (leave it to me to be inappropriate!). Being treated with metoprolol which so far hasn't done anything to help but does make me feel tired. Felt palpitations yesterday while paying for groceries and looked down to see my left foob bouncing up and down quite noticeably under my t shirt. HS guy running the register was fixated on the bouncing foob and I couldn't get out of the store quick enough.
I'm really hesitant to go for my 5th treatment and don't understand why I'm having such problems. Study nurse blamed it on the herceptin and cardio says my tachycardia is chemo related. I'm seriously overdue for some easy cycles for a while though. Hope everyone has a wonderful week!
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Mom2Three, I so identify with you because I was also the TDM1 problem child at DFCI (for different problems). I told myself, Well, this drug sure is powerful if it's doing these things to me, so it must be slamming the cancer cells too. But you do need some relief from SEs! Cannot believe your follow-the-bouncing-foob story--it's too much!
A radio talk show host who was treated for BC a few years ago said she refers to herself as a "cancer thriver" rather than survivor. I don't feel like a survivor because I didn't almost die, you know? But I think you're right about starting the count from date of diagnosis, so let's just say I'm a two-year BC thriver.
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good to hear from you mom2three, but sorry about the rough time you are having! Heart stuff is way scarier than a little stomach irritation! Are they considering completing your treatment with Herceptin only? Sure hope the heart meds start working better for you!
Kerry - I'm glad you did what felt right for you! It's so important not to be second guessing yourself! Please do stay on this thread - I'll enjoy the Taxol/ Herceptin company and am eager to hear how you do!
Wish I could say the nausea problem is gone with the Prilosec, but it doesn't seem to be helping too much anymore. I still don't know why I have it. I'm starting to think it may be a side effect of the Effexor that I'm taking for hot flashes. Looks like I may have to decide which is worse, nausea or all day intense hot flashes. I'll get another round of Herceptin tomorrow and I'm curious whether it has any effect on the level of nausea this time.
Thanks for the link Maggie. I especially like the part where they said that her2 disease actually has a better prognosis than her2 negative with these new medications. Also nice to know there's more in the works. I sure hope none of us recur, but it is very good to know that new options will be there if we ever need them.
I like the Thriver idea. In four days I will be an eight-month thriver. Hey, it's a start! And I will definitely join the toast to Isabel's two years!!
Wishing everyone a fabulous week!
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thanks for this article, MaggieCat. You are quite the researcher. I, too, am pleased to know these new therapies are such good news.
I had a couple of bad "sticks" last Tuesday and am thinking I shouldn't wear my lymphedema sleeve while exercising. Only had 2 nodes removed, so the infusion was made on the surgery side. Maybe I'll try an ace bandage near the bicep and leave the heavily bruised lower arm alone.
I was enjoying deep water aerobics today and realized our arm movements might require a sleeve. Thinking of just free swimming and not doing muscle toning exercises. The pool just reopened after being closed for three months, and it was so life affirming to get in the water.
I am trying very hard to be in the moment and not wish away any time. Everything is so much more vivid.
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I have been dealing with acid issues for about 6 weeks. Started about 1/2 way through radiation treatment. I needed help once the boost series began. The thought within my team is likely caused by the combo of rads with a T-DM1 infusions (on day 10 of 21 rads and again 5 days after I finished rads). No mention of rad back scatter as a possible cause! I'm on an over the counter acid reducer - Pepsid AC - and chewing tums. Prescriptions tend to be liver processed so trying to stay the course with what I have. This unsettled feeling kept me away from the gym for the last 4 weeks. Bucked it up and went to a Pilates class yesterday and going to try Yoga today. I don't do well with nausea, even slight nausea, so my favorite Yoga class may still be a stretch with those head down positions.
A section from the above linked abstract I find of particular interest ....MM-302 is a novel ADC that offers targeted delivery of pegylated liposomal doxorubicin to cancer cells overexpressing the HER2 protein. Based on a phase I monotherapy study, MM-302 is well tolerated with promising activity, especially in patients with anthracycline-naïve breast cancer.39 In the phase II randomized HERMIONE trial (NCT02213744), the investigational drug MM-302 plus trastuzumab will be compared with chemotherapy of physician's choice plus trastuzumab in anthracycline-naïve patients with locally advanced breast cancer or MBC that has progressed on pertuzumab and T-DM1 in the advanced-disease setting. - See more at: http://www.gotoper.com/publications/ajho/2015/2015...
Have a wonderful day.... Maggie
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Maggie--great article, thanks for posting. Money quote: "While evidence consistently shows that in the absence of HER2-directed therapy, HER2-positive disease has a poorer prognosis compared with HER2-normal cancer, recent studies are now indicating that the prognosis associated with trastuzumab-treated HER2-positive breast cancer is better than that for HER2-normal breast cancer, thus indicating that trastuzumab has altered the natural history of HER2-driven cancer."
Ozoner, you wrote: "I am trying very hard to be in the moment and not wish away any time. Everything is so much more vivid." I can't tell you how much I identify with that statement. Beautifully put.
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Isabel, I'm glad the vividness isn't fading for you! Some of my friends further down the road say they don't feel that way anymore. That would make me sad, as it's one of the greatest silver linings to an otherwise crummy situation. And I agree, well stated Ozoner! BTW have you been diagnosed with lymphedema or is the sleeve meant to prevent it? I had 4 nodes removed and a sleeve was never suggested, nor have I had any symptoms in my arm despite quite a bit of exercise including weight lifting. Are you considering a port to avoid these nasty sticks? I initially fought against it and am now glad I have it!
Maggie, sorry you are also struggling with nausea - it's no fun at all! So far what works best for me is a CBD mouth spray. Doesn't cause constipation or sleepiness like the Rx meds and works pretty quickly. Interesting that your team doesn't think it's RT scatter. I don't think any of them truly know. My RO blames chemo and the MO blames RT. No one wants to "claim" any SE!
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TTFan, about this continued vividness--your friends who don't experience it anymore may be way ahead of me. Before I had cancer, I actually used to say--to myself and to friends--"every day without a diagnosis is a good day." Then I got the diagnosis. After the initial anxiety, fear, and grief, I began to realize that I felt like I'd discovered the meaning of life--hearing a thrush when you wake up, having a good cup of coffee, laughing with my husband, and so on and so on. Just normal everyday things. That's all there is. So i want to love it all. Truly that's cancer's silver lining. Other than that, I have no use for it. ;-)
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Hi all. TTfan, my surgeon wants me to wear a sleeve on aircraft and did say she didn't predict any problems because I just had 2 nodes removed. She does recommend the sleeve for repetitive movements like pulling weeds.
So, after reading about your experience, I think I'll take it slow and just wear the sleeve on occasion. I have a recreational kayak that I use for bird watching on a lake, and i feel strong enough to do that now (as soon as the Carolina wren chicks fledge from their nest inthe cockpit!).
The vividness part struck me when I realized that on the days when I feel good, I am actually so happy, not just ok. I thought my eyes looked tired, but people have been telling me they look clear. And indeed, they do!
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I've seen posts about acne SEs, and wanted to ask if any of you have had tiny scabs in your scalp. I had a tick bite on my abdomen, so maybe that's why I noticed a scab every day or so in my scalp. No new shampoo or anything. Tick bite seems okay so far.
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Ozoner, when I had what seemed like a scab on my scalp it was actually a tick--still attached. Total freakout. I didn't end up with Lyme disease that time (though I did a few months later). Are you sure your scabs aren't ticks or tick bites? Other than that I have no ideas.
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Ozoner.. Tick bite??? I honestly think a tick bite in June 2014 started my progression to invasive... Of interest... a UVa clinical study found Her2+ more in the SE US.
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Hmmm. I hate to hear that! There are so many interrelated possible causes: genetics, dense breasts, age, obesity, not having kids, HRT, birth control pills... No wonder BC is so prevalent. I'm not having a reaction to the seed tick bite, but I may have my dermatologist make sure all the tick parts are out. What kind of tick was yours?
Oh well, at least I have TDM1 coursing through my body!
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