ATEMPT Clinical Trial - Roll Call
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Of course there had to be one more thing, Maggie! It gives me hope that you're finished.
Laura, congrats on being 1/3+ through!
I had #2 today and one more before Christmas. Feels good to be getting on with it! The one hour sure beats the 2 1/2!
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I'm getting my #6th infusion now. My MO said my platelet count went up to 115k from 99k at my #5th. Yay! I don't know how it went up, but I was worried that treatment may have been delayed if it continued going down.
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great!!!
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TinyDancer .. whatever you did, keep doing it!!!!!
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The only thing I did was to walk more. On Tuesday, my nurse who took my blood did a platelet dance to bring my number up.😀 It was another long day waiting and I was so tired when I got home today that I curled up on the couch and went to sleep.
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Sooo... walk more and then do what you (and I did)... find a warm spot to take a nap...
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I try to take a walk every day. I don't know if it will help but it makes me feel better.
So far I'm doing much better this time after #2 on Tuesday. After the first one I had a week of nausea, almost constant queasiness, and 2 weeks of battling constipation. So this time they did not give me Zofran before the infusion (constipating), just the steroids (Decadron) and had me take 2 of those the next 2 mornings. I did have some nausea & queasiness yesterday starting around mid-day, but Compasine and someginger tea took care of it. Today I've felt almost normal all day - it was great! I also read up on what to eat before & after chemo and am being much more careful about what and how much I eat. Fingers crossed that this continues to be more the norm!
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Sounds really good, SerenitySis!
TinyDancer, I was the winner of the low platelet prize. ;-) My nurses told me to run upstairs a few flights before getting my blood tested--this can temporarily spike the count so you get a good read and can proceed with treatment. But they also told me there's nothing you can do to keep the level up consistently. But in terms of just feeling well, I also love walking--I kept it up during the whole treatment year.
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I finished rads yesterday! My team had a little graduation for me complete with Pomp and Circumstance. Overall a positive experience
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Wabals... Thank goodness for positive experiences! ... and a big step forward! Maggie
(My port is now history! My imaginary #18 was yesterday... so I'm into uncharted territory, over 3 weeks with no infusion.)
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MaggieCat that is awesome! Do you not know what to do with yourself?
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Congrats Wabals!!!
And here's to "uncharted territory" Maggie! It's starting to feel a little more like normal energy every day. I'm still annoyed by the neuropathy and AI joint pain/hot flashes but having thrown everything in the arsenal at them - acupuncture, L-carnitine, alpha lipoic acid, turmeric, Gabapentin and now Bikram Yoga - I just need to accept this new normal and carry on. What is that saying about changing what you can and not fighting what you can't? I never would have had the energy for a 1 1/2 hour hot yoga class during treatment, so just getting through each class is reason enough to be happy!
Happy holidays to all those celebrating and to all of you making your way through this crazy year of treatment, keep carrying on !
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Thanks TTfan! Merry Christmas to you. Love your positive attitude!
Had kadcyla #6 yesterday.....13 to go
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Wabals - congrats on finishing rads!
Maggie - great news your port has been removed
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Thanks Tiny!!
Maggie congrats on being port less
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Holiday Greetings! A month past my final T-DM1 infusion and..... I wore eye make-up for the first time without irritation this week! My fingernails are growing at a rate I haven't experienced for some time. 2 weeks since the port was removed and the incision is healing. Looking forward to getting better and better! Have to add.... am encouraged with the trial info presented at SABC earlier this month. Granted the Atempt trial early look hasn't made it to the conferences... BUT early info on T-DM1 and the potential to move across/impact brain mets is........
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Maggie, congrats on being a month past. I'm curious about your eye makeup and irritation comment. I've had some strange issues with red, itchy eye lids which depending on which dr I ask could be allergies, stress or dermatitis.
I had my first of six boosts today along my scar. Skin is tan/pink with some peeling but my RO says my skin is doing very well compared to other patients and to keep using Calendula and Aquafor creams. I also had my #7 infusion and my doctor, nurses and I are waiting to find out if I will have the metallic taste tomorrow. I haven't had it the days after #5 and #6, and my MO thinks that I am just getting used to the drug. Can't wait until tomorrow morning when I wake up. Platelets went down to 103k from 115k. I know, get walking!
Happy Holidays to all of you!
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Tiny Dancer - My eyes were itchy, red, dry then tearing off and on. I was told it was a histamine response to T-DM1. Tried to wear eye make-up off and on and found the increased irritation wasn't worth the few hours of an "enhanced me"! Started using flonase after #12. It helped somewhat along with continued artificial tear drops. Congrats on being at the end of rads!!!!
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Maggie, my Dermatologist says it's too much histamine and I am now taking Hydroxyzine for allergic skin reactions, hives and dermatitis. I agree that it's not worth trying to be "enhanced". Hopefully it stops soon. Happy you found something that helped you.
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Maggie, thanks for mentioning the news on TDM1 at the San Antonio conference--I'll google this.
And I want to wish all the women who visit this thread a very happy new year!
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I had my last radiation treatment today! Yay! Time to celebrate.😃🍸
Happy New Year! 🎉
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tiny... wonderful timing... Happy New Year to You!!!!
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congrats tiny dancer! Nice to have that done for the new year!
Happy New Year to all - my warmest wishes for a healthy, peaceful and far less eventful 2016
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Yippee! So happy for you. I hope you have a speedy recovery!
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This thread was recommended to me because I have been giving an option by my oncologist to participate in this trial. I notice from reading the various DX here that you are all stage 1 with your tumors at 1cm or less. I am stage 1 with a 1.7 cm tumor. What are your thoughts?
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Tuboss - Welcome to our small but significant support group! I was 1.2 x 1.1 x 0.8. Using the "largest dimension" I was t1c (1.2 cm). Depending on your other dimensions the tumor burden may be similar to mine. The ATEMPT clinical trial was my first choice for treatment. I had already had a lumpectomy before considering options. Can you tell us more about your situation? Other treatments being considered, etc... Maggie
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Hi Tuboss - so sorry you are in the midst of this difficult decision making phase, it is very hard. If you think it might be helpful I'd be more than happy to chat with you about my research and decision making that resulted in choosing the Atempt trial. I participated via UCSF and my MO there, Dr. Rugo, remains extremely positive about the efficacy of both arms of the trial, TDM-1 and the Taxol/Herceptin for all Stage 1 women, including the 1-2 cm. group. PM me your number and some good times to call and we can talk if you like.
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Hi...Sent you a PM with contact information.
Thank you.
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http://www.bbc.co.uk/programmes/p03djyl7
Interesting video from BBC presenter currently going through chemo. Reminds me that no matter how hard chemo was, I kept my hair with T-DM1 and never looked like I was going through chemo.
Her comment - 'I'm finding this hard'. She then reveals how she has struggled to come to terms with the hair loss, admitting it has affected her more than her mastectomy.
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Tuboss, I hope I am not too late to give you information. (I've been away.) I was diagnosed in summer 2013 at my local hospital in upstate NY. The onc I saw there was going to give me ACTH--the toughest BC chemo regimen. It made no sense to me, as I was stage 1. Why treat Stage 1 the same as 2 or 3? I had several small tumors, the largest 1.1, and had a mastectomy (originally Dx was multifocal DCIS--all over the place--but the HER2 tumors were found in the tissue analysis).
This propelled me to seek a second opinion at Dana Farber and a third opinion at Sloan Kettering. The oncs at the two cancer centers offered me similar options: TH (Taxol and Herceptin), or no treatment at all (seriously!--for me that was not an option), or the ATEMPT trial (TDM1) (approved by the Sloan Kett. doc but not actually offered there). After two weeks of thinking, I opted for the trial at Dana Farber. I have never regretted this decision, though I did have worse SEs than my onc expected. As I have posted in this thread, I did have queasiness and some other mildly unpleasant SEs, but I never lost a day to feeling sick--my life continued exactly as it had before. For this I was tremendously grateful. I was fully prepared to be assigned to the Taxol arm of the trial, but I did randomize to the trial arm.
If you want more info, please PM me--i'd be happy to write more. I wish you the very best in making your decision!
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