ATEMPT Clinical Trial - Roll Call

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  • wabals
    wabals Member Posts: 242
    edited October 2015

    Had #3 today. So far so good!

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  • MaggieCat
    MaggieCat Member Posts: 346
    edited October 2015

    Tomorrow is 15/17. Luckily this storm/rain event is over. The 2 1/2 - 3 hour drive up there should be ok.

    image

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  • wabals
    wabals Member Posts: 242
    edited October 2015

    Met wit rad onc today. Cannot wait to get that done!!!image

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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited October 2015

    Maggie, glad the weather won't interrupt your schedule. Amazing picture.

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  • Laura61
    Laura61 Member Posts: 51
    edited October 2015

    How many weeks of radiation did folks have while on TDM-1. Any advice whether to go with the traditional 6-week regimen or a shorter course? I did have some isolated cancer cells in my lymph nodes - even though the medical oncologist said "it's nothing" the radiation oncologist is saying "might as well treat that too..." Oy!

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  • MaggieCat
    MaggieCat Member Posts: 346
    edited October 2015

    Laura - Good to hear your RO wants to expand the treatment field. No isolated cells were found in my lymph nodes yet the radiation field for the boost portion included sweeps into the SNB incision area. I was on the shorter Canadian model (4 weeks). Had my 6 month check-in with my RO today..... The end is in sight!!!!!! Maggie

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  • Laura61
    Laura61 Member Posts: 51
    edited October 2015

    Hi there. Minutes after I posted this my RO called and suggested the 4 week course after all! Yay! I'm super psyched to shave 2 weeks off...

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  • MaggieCat
    MaggieCat Member Posts: 346
    edited October 2015

    Great news Laura!

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  • Ozoner
    Ozoner Member Posts: 128
    edited October 2015

    imageHi all,

    • Maggie, hope your chemo went okay today. I agree, yours is an excellent picture! Here's me today at my 25Th and final radiation treatment. I had this retro radiation sign made, and after this photo, I positioned the sign by a box of Halloween treats for the staff.
    • Laura, I found the rads much easier than the chemo. Glad you'll only be going for four weeks. It took me a couple of days to relax for the treatments, but they played music and made it pleasant.
    • Tomorrow I get my second Herceptin only treatment. Due to neuropathy getting worse after four months of Kadcyla, I'm on Herceptin to stop SEs. So I'm not still on the trial, but my case will be followed for five years. I'm grateful to have had Kadcyla for the chemo, because it's such a good option.
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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited October 2015

    Ozoner, your post is proof that a sense of humor is as important as all the treatments we receive!

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  • Laura61
    Laura61 Member Posts: 51
    edited October 2015

    I'm trying not to wish my year away, especially because I don't want to miss this year of my kids' lives (6 & 8), but I really am hating this every 3 week treatment thing. It feels like it's going to be forever and I just want it to be over. :( Four down, 13 to go doesn't sound like I've gotten very far. This sucks. I know intellectually that I should feel so lucky - it was caught early, I'm avoiding traditional chemo which I know is much worse, etc., but I still just want to complain. There, done!

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  • MaggieCat
    MaggieCat Member Posts: 346
    edited October 2015

    An "inconvenient year" that saved my life..... that was a quote I read early on from a Her2 survivor.... and has stayed with me. It might have been Isabel's comment.

    Reflecting back, around the time of #4 (mid-Feb.), I was not seeing how I was going to get through the next few seemingly endless weeks of radiation treatment, let alone look further out in time! I did play a numbers game in my head....goal was to get to single digits (8 down, 9 to go). Now I am amazed ... 2 to go AND the port removal surgery is scheduled......

    Ozoner.... Love the sign! Seems you are still a "trial gal" if you are part of the 5 year follow-up.... just a different dosing schedule. Enjoy your return to the once every 3 weeks schedule...

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  • TinyDancer5
    TinyDancer5 Member Posts: 232
    edited October 2015

    Yep, after #3 I did get a bloody nose for about two days, but then it stopped. Still runny though.

    Has anyone else experienced problems logging in for the past few days?

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  • TTfan
    TTfan Member Posts: 176
    edited October 2015

    hi all! My email notice for this thread stopped working, I didn't know and figured y'all were doing so well nobody thought about posting! So I peeked today and found andcaught up with the posts. I have the end in sight like Maggie - two more Herceptin to go, last one Nov 11. Time does pass even though that doesn't feel true in the early part of treatment. Hang in there everyone - hugs to all!

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  • Ozoner
    Ozoner Member Posts: 128
    edited October 2015

    My platelet count went from 114 to 127 after I moved to Herceptin. Had no idea it was so low!

    Congrats TTfan! You and Maggie are forging the way. Soon it will be time to celebrate

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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited October 2015

    Ozoner, when you say your platelet count went from 114 to 127, do you mean 114,000 to 127,000? 127 (without the zeroes) would be very dangerous! I went down, at my lowest point, to the 50,000s. Last checkup I was still not back to normal--my normal is in the 150,000s, and I was still around 130,000 I think. Nobody knows why it's still a depressed number.

    Laura61--it's pretty hard, the grind of the treatment year. No one can deny that. You are allowed to complain here! If you can, try to focus positively on the gigantic breakthrough that Herceptin represented for us HER2+ ladies. Some day researchers may determine that a full year of it isn't necessary. But in the meantime, keep being your own cheerleader--you got HER2+ BC, which sucks, but you got it in 2015, just 10 years after clinical trials revealed Herceptin as a total game changer, allowing you and all of us to go on with our lives. I'm a full year past the end of treatment, and I still can't get over the fact that if I'd had this diagnosis pre-Herceptin...well, I don't like to think about it. In any event, you WILL get through this, and then the era of NOT thinking about BC every gosh darn day will begin, I promise.

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  • Ozoner
    Ozoner Member Posts: 128
    edited October 2015

    Hi!

    Yes, I'm sure it's with the zeroes. I looked on a blood work readout, for while I was taking Kadcyla and the higher numbers since I went off. Didn't really know what I was looking at, just that puppy teeth aren't making me bleed so often!

    Laura61, I hope that soon your happy days will far outweigh your bad ones. Taking care of children must be the most rewarding--and the most tiring-- for women going through this. Our forum allowed me to relate with others who really understand, without judgment, since friends and family often want to hear the good news, don't they? Positive thoughts coming your way.

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  • Laura61
    Laura61 Member Posts: 51
    edited October 2015

    Thanks for the support, bc friends! I know I'll get through it and come out fine on the other end, but this is definitely a slog! Emotionally, I'm doing well. I just am dreading infusion days and the few days that follow. Nothing too horrible, just overall malaise and I'm not good at slowing down! #4 was a bit better than #3 actually. I took my onc's advice and took a few naps so maybe that helped. I'm still not 100%, but mostly feel ok. Onwards...

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  • MaggieCat
    MaggieCat Member Posts: 346
    edited October 2015

    Yep, onward.... At #3 I was advised to back off on personal trainer sessions at the gym. It helped. Then a bit later I was advised to listen to my body and take naps when needed. That has helped too. Oh and drink lots of water!!!

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  • TinyDancer5
    TinyDancer5 Member Posts: 232
    edited October 2015

    My simulation round is Nov 2nd and radiation starts on Nov 9th for 6 weeks. M-F. My RO says I will be in the prone position so I will not have to worry about my heart and lungs.

    My #4 is on Thursday and I will ask him why do I get 6 weeks when some of you get 4 weeks.


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  • Ozoner
    Ozoner Member Posts: 128
    edited October 2015

    hi TinyDancer!

    I found radiation to be easier to handle than the chemo. It took several times to relax in the body mold and to hold still. The first time I took a Xanax.

    My RO told us to get Cetaphil lotion in the tub and to apply it three times per day. I went for five weeks and it was a large part of my life. At week three he gave me off a Friday so I could take a long weekend trip, and they put the missed day of treatment at the end.

    You can still do what you want to do, but I had to factor in some time to rest. Resting was a new experience, but my body needed it, and rolling up in a blanket was comforting. The treatments got shorter-seeming, especially when they turned up the music for me. Heck, 3-4 songs and I was done. I tried to think of rads as a time to relax and something positive I could do for myself.

    One week after final treatment I have a "sunburn" and some stippling of the skin. Best wishes to you. I'll be sending positive thoughts your way!

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  • TinyDancer5
    TinyDancer5 Member Posts: 232
    edited October 2015

    Thanks Ozoner. Is there anything I should be using to protect my skin before it starts? I'll get the Cetaphil lotion and I read pure aloe works too.

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  • MaggieCat
    MaggieCat Member Posts: 346
    edited October 2015

    Tiny dancer.... a different skin ointment, Calendula ointment. I purchased Cetaphil and then was given the Calendula by the RO. I used both.

    Your question about which Rads approach ( short vs standard) seems to be asked a lot! Breast size is one factor. I recently read an abstract from a European study that differentiated by the specifics of the cancer (how aggressive, hormone status, etc). I wonder if the prone position has something to do with the choice as well....

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  • TinyDancer5
    TinyDancer5 Member Posts: 232
    edited October 2015

    I had my #4 infusion today and I feel fine. My blood test showed my platelets are low this time 106,000 and my MO checked the protocol of the study and said if it gets below 75,000 he would have to delay a week in order to get my level up. Completely normal and nothing to worry about. He also said when rads end I will start on Tamoxifen for 5 years.

    I asked him about the 4 weeks of rads and he thinks maybe it is age related or hormone status = I am (ER+/PR+, HER+). I will ask my RO when I see him

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  • Serenitysis
    Serenitysis Member Posts: 80
    edited October 2015

    Hi everyone,

    I'm new to this site. I am being treated at Dana Farber in Boston and am in the process of deciding between the Atempt Trial and the standard of care, Taxol & Herceptin (which I understand totally that I could end up with anyway). I really don't have a strong preferece; I'm somewhat ambivalent about the uncertainty of the effectiveness of TDM-1, but do think that this sort of targeted therapy is probably the future of cancer treatment). Would any of you who are in or have completed either arm of the trial at Dana Farber be willing to speak with me personally about your decision to do the trial? I'm not sure how that would be arranged.

    I am very grateful to have found this site and appreciate allthe information.

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  • MaggieCat
    MaggieCat Member Posts: 346
    edited October 2015

    Serenitysis... PM with any questions... I'm sure other would welcome the same.


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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited October 2015

    Serenitysis, Yes, as Maggie said, send us a private message. I did the ATEMPT trial at DFCI, finished up over a year ago. Would be happy to correspond about this!

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  • wabals
    wabals Member Posts: 242
    edited October 2015

    I would be happy to Serenitysis.

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  • TTfan
    TTfan Member Posts: 176
    edited October 2015

    Sure Serenitysis, I'm happy to chat with you as well. I'm just about to finish the Taxol / Herceptin arm of the trial. PM me with your phone # and good times to call and I'd be happy to talk

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  • TinyDancer5
    TinyDancer5 Member Posts: 232
    edited October 2015

    Has anyone else had their face break out with acne like they were a teenager again? (That was a very long time ago for me.) It started a week after #3 infusion, cleared up and now a week after #4 it started again.

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