ATEMPT Clinical Trial - Roll Call
Comments
-
Isabel, my MO, Nurses and Researcher said the same thing. Now my job is to adjust and move forward and enjoy life.
0 -
Congratulations TinyDancer
0 -
Hey Wabals! My doctor wrote a prescription for the bras, just like one might get a walker or a cane (and last year she wrote one for a lymphedema sleeve). The doc's office might provide the scrip if you call them. Also, my hospital has a nurse navigator who knows all about local services, such Pretty in Pink Boutique, ABC fitness at the Y, a nutritionist for when I didn't want to eat, a wig bank, and so much more. I had bought a wig before I got on the Kadcyla trial, and it was gratifying to know it went to help someone.
Let me know if you make any headway
0 -
Tee2, I'm so happy your second treatment was much better than your first experience. Hang in there.
MIPat, I always felt cold when the infusion started too. Just ask for a warm blanket.
Serenity, you're almost at the finish line too! YAY!
Isabel, Maggie, Ozoner, Wabals - a big Thank You for helping me complete all 17!
0 -
Thanks Ozoner
0 -
Yay Tiny!! You did it! Be proud of yourself😄
0 -
I am on my fifth day post-infusion #1. I easily tire and have been napping 1-2 hours about twice a day the last few days. My appetite isn't great, but I make sure that I eat since there is no nausea. Some of the other things that I am experiencing aren't new so it is hard to say that it is related to the TDM 1. I don't know if it the drug or the stress, but since the infusion my Rosacea is as bad as it gets during the winter. I look like I have teenage acne. Hopefully this isn't the norm for the next year.
I do have a diet question. Kadcyla is not considered chemotherapy. I was wondering if you were told to take precautions with foods like strawberries, uncooked canned beans, etc
0 -
Hi MIPat,
I've had no restrictions from my MO on food. However, my appetite for at least the week of treatment is not good at all. It's hard for me to eat; not really nausea, like you say, but just no appetite and it's hard for me to think of anything I want to eat. I have to force myself to eat. I've lost 11 lbs. since January. I try to make it up when I'm feeling better.
0 -
MIPat--no restrictions on food at all.
Many of you have mentioned that you lost weight or are losing weight because of loss of appetite while on TDM1. I lost weight too, on top of having already lost weight on a low-carb diet before my diagnosis. Here's just a word of caution for those of you who will be taking Tamoxifen (if you're ER+): although doctors are adamant it doesn't cause weight gain, I've gained 15 pounds that I cannot get rid of no matter what I do, and many, many other women experience the same thing. My MO says it's all because of menopause, not Tamoxifen. I trust and respect her, but I have my doubts.
0 -
MIPat, I was encouraged not to go to buffets! Hadn't heard Kadcyla isn't chemo.
Congratulations, TinyDancer. Keep on dancing!
Isabel/Archer, that's interesting about the hormone blocker. I'm on Aromasin and have gained back 15 of the 35 pounds I had lost. I'm glad my weight is down, but even w Zumba, dancing, light kayaking, and walking, I can't seem to get straightened out. And I can't blame it on menopause, which happened years ago. I feel like I'm enjoying a second childhood, though, hormones or not!
0 -
Ozoner, I think that they said it wasn't chemo based on the Herceptin portion of Kadcyla. The Emtansine is a cytoxic agent. So, it certainly has a chemo component. Before my first infusion we met with a bunch of friends at the Asian Buffet for one last time before infusions started.
Serentiysis, that is precisely my problem. No nausea, though if I eat a normal size dinner I feel like I have a lead weight in my stomach for hours afterwards. I am going to start eating smaller portions and have snacks. I am trying to get enough protein, fruits, and veggies and cut out the extras. Over the past 16 years I've had a series of musculoskeletal injuries and problems and have put on a significant amount of weight. Menopause hit and it has been a struggle to take off the weight. While smaller portions are what I should be doing, I need to make sure that I don't loose too much at a time
0 -
Ozoner and MIPat-- I'm neither a scientist nor a doctor, but here's my understanding: TDM1 isn't technically chemo because the chemo "piece" of it--emtansine--is delivered to cancer cells by the Herceptin "piece." Herceptin is a biologic, not chemo. Chemo targets all rapidly dividing cells in the body; Herceptin targets only cancer cells. The genius of TDM1 is that it uses Herceptin to deliver the chemo element to the cancer cells and leaves the rest of the body alone (which is why you don't lose your hair and don't get some of the other classic chemo SEs). When I unexpectedly had chemo SEs like mouth sores, the way my MO described it was that the emtansine (chemo piece) was "breaking through." All part of the research involved in the clinical trial... Another interesting thing I learned from my MO is that emtansine is one of the most effective chemo drugs found for BC but was discontinued in the 1980s because patients could not tolerate it--it was so toxic that SEs were intolerable. The TDM1 researchers seized on the discovery that Herceptin could "deliver" chemo to cancer cells and used emtansine as the chemo.
0 -
Isabel you gave a good description of Kadcyla's action. We are fortunate that this type of treatment is available. Hopefully the ATTEMPT Study will show that this is just as effective as Herceptin and Taxol so the in the future women with HER2 BC will not have to go through chemo.
I resorted to taking a Compazine last evening and started drinking peppermint tea. I ate a lighter breakfast and smaller meals along with peppermint tea today and I haven't had that "lead weight" in the gut feeling today
0 -
MIPat, my onc also recommended ginger for queasiness, so I had ginger tea. Not sure it worked or if it just made me feel better to think it was working!
0 -
Very interesting. My friends would ask if I was still getting chemo, and although for the final eight months I was getting only herceptin, if I said it was targeted therapy, they got confused. I'm glad the docs figured a way to deliver the chemo component in a less toxic way. Grateful for the study and ever more humane treatment
0 -
I just had my last Echo for the study today and on Friday 8/19, I am scheduled to be de-ported!
My little purple chemo eater port will be removed. YAY!How is everyone doing this week?
0 -
TinyDancer, that's all so exciting! You will REALLY be done by the end of this week. Congratulations! It's so great.
I'm down to 3 more treatments! My toughest SE continues to be loss of appetite/weight loss. I'm going in to see a nutritionist tomorrow. I've now lost 15 lbs. and was very thin to begin with. I feel like I'm wasting away to nothing. I have 2 more months and can't afford for this to continue, so I hope she has some good recommendations. It's so discouraging. It affects my mood and my energy level.
0 -
TinyDancer,
Woohoo! I get my port out on the 31st! Cannot wait to be de-ported😀!
0 -
Congrats TinyDancer and Wabals!!!
Tee2, so glad your second treatment went better.
MiPat, good luck with the treatments.
I just had my 5th treatment on Friday - I'm usually tired for 5-6 days after, 3rd day after infusion is the worst for me. Also had my first radiation treatment today - was so anxious for the last week, still feel sick to the stomach with anxiety. I'm getting 5 weeks. Also getting back to work this week - only a couple of days a week. Stressed about the fatigue possibly increasing.
Any recommendations on radiation along with chemo are highly appreciated. I have bought aloe vera gel and am applying it.
Thanks!
0 -
Reikion, hope your rads get easier. The first few times are hard because it is difficult to relax. After a while, it's almost like taking a nap. I took a Xanax if I was stressed and then treated myself to Starbucks on the way home or made a lunch date.
I requested that they turn up the radio and noted the passing of songs. I used the big tub of Cetaphil cream, and the doc can prescribe a stronger steroid cream in the last weeks if you get a "sunburn" effect.
They got my visits down to about 12 minutes, and although I kept my eyes closed at first, I then started taking an interest in the machines and some lovely moving lights in the room. I wanted to be a real person to the techs and made a 1950s style "radiation zone" sign my last day and had a photo taken with them. The fellow patients in the changing room were so supportive, and I was humbled by their trials and grateful for a great prognosis.
During treatment, I did anything I wanted to bring joy in my life, and while radiation caused fatigue, I learned many life lessons from the patients and staff at the clinic.
I know you'll do great Reikion, and I really do recommend Xanax. I mostly used it on chemo days before any blood was drawn, and once I got used to the rad routine, I didn't need to be calmed and nearly napped on the table. Let us know if radiation treatment becomes less scary to you. I know it will
0 -
Reikion, I had 6 weeks of rads in the prone position.The first week of rads for me was hard to relax while watching this big machine move around me making strange noises. It took a while to get me positioned and lined up correctly on the table too (sometimes I felt like a ball of pizza dough with the techs kneading me into place). There were a few times where I finally lined up on my own. I was told to use Calendula and Aquaphor daily and my skin did really well. Pink at first, a sunburn and then a tan. My last rad was 12/31/15 and there is a fading tan line on my chest..
0 -
Thanks Ozoner and TinyDancer5!
It's getting better.... yesterday was easier. Chemo effect is also easing and that is helping.
It doesn't help that the technician has a huge chip on her shoulder and is the rudest medical staff I have met. I understand that to them it is just a job but a little politeness even without empathy would be nice.
I'm using Aloe Vera and Calendula and will continue to do so.
Thank you !
0 -
Hi Everyone,
I just got back from a lovely vacation in the Outerbanks N.C., I was even allowed to miss a treatment while I was on vacation. Unfortunately, I am back to reality... Just had successful #3 of taxol/herceptin this past Wednesday. The steroids are working well! I think they want to keep them on board throughout... Not a huge fan of that, but if it helps with the reaction and makes the infusion successful, I can deal with the steroid side-effects. As far as the SE of taxol, they suck. I have nausea, diarrhea, numbness/tingling in arms and feet, and muscle and joint aches in my legs. But it typically occurs on day 2, 3, and 4 (Fri., Sat., Sun), which are my days off from work. By Monday I feel OK and then back in the infusion chair on Wednesday, no more vacations (for now). I'm starting to notice my hair coming out, so I guess it's only a matter of time before I shave it off. I think that will be tough, but I have accepted it. I'm hoping to make it to infusion #4, then get the shave next weekend... I think my biggest issue is looking like a cancer patient. I don't feel like one, except for when I don't feel well or I'm checking in to all my appointments on Wednesday. But looking in the mirror everyday at my bald head will just make it so real for me I think that feeling will suck.
I'm hoping my SE don't get much worse, Fall is so busy in my house and I am so nervous how I will handle 3 kids active in 2-3 sports each, not to mention schools starts for me and them and work... Well maybe all the distractions will be a good thing.
I'm happy to hear all the great news with almost being done and getting de-ported. Congrats to all!
Stay strong ladies! You are all incredibly amazing!
0 -
Tee2-- Clearly, despite your SEs and worries about managing the demands of life while on chemo, you are approaching this with a fighting spirit and optimism, and I am cheering you on. So glad the steroids allowed you to go forward, and that you were able to enjoy your vacation!
0 -
Interesting editorial - references ATEMPT (next to last paragraph)
"The dramatic successes made by adding pertuzumab to standard chemotherapy plus trastuzumab in the neoadjuvant and first-line metastatic settings have revolutionized our approaches to HER2-positive disease; however, positive results in refractory MBC4,11,12,14,15 and recent reports of significant efficacy in the neoadjuvant setting with T-DM1,19,20 coupled with excellent tolerability, gives cause for optimism for future incorporation of this drug in early breast cancer, with hopes for an improved therapeutic index. A step in this direction is the ongoing ATEMPT trial,21 which randomly assigns patients with stage I HER2-positive breast cancer to T-DM1 versus paclitaxel and trastuzumab."
http://jco.ascopubs.org/content/early/2016/07/14/JCO.2016.68.4241
0 -
Thanks for posting that piece, Maggie. My favorite word in it is "curative." :-
0 -
On my way to get "deported"! It will be done under local which makes me happy
0 -
I was deported! Easy Peasy! Tiny scar.
0 -
Congrats Wabals!
0 -
Hi all. It has been very busy for me lately. We have moved into our new house but everything is still in boxes which has proved frustrating. We've put our old house on the market and have already had 7 showings. I've also been doing all the things necessary to get the kids ready for new schools including high school. But best of all I am currently in Rehoboth Beach, DE with the family and will be spending some time with my husband's family.
The 23rd I had my second infusion. My liver enzymes went up a little bit, not enough to hold treatment. I guess all I can do is make dietary and lifestyle changes that minimize stress on my liver. Because I developed cold, shakey hands with the first infusion, they gave me Benadryl prior to the second. I tolerated it well, but ended up sleeping 15 hours straight. Besides the week of lethargy, stomach upset, and lack of appetite, I now have a little bit of a runny nose and a very dry mouth. Week 2, day by day I feel more like myself. I expect to be back to normal the third week only to start all over again. I choose not to think about loosing a week every three weeks for the next year. I am beingreferred to radiology my next visit.
Congratulations Wabals!
Maggie, thank you for the article. I appreciate the research that you share with us.
TEE2 wishing you the best. Know that I am still praying for you.
0
