ATEMPT Clinical Trial - Roll Call
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MIPat-- I think there's a good chance you'll adjust to the drug in your system and feel fewer SEs as you go along. It also seems like the current demands of your life--the move, taking care of the kids--are exacerbating SEs and making you more tired than you might otherwise be. I hope when you're unpacked and the kids are off to school, things will settle down for you. What a crazy time to have to begin treatment! In the meantime, so glad you're able to enjoy a vacation!
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Thanks Mlpat and Tiny.
Mlpat sounds about right. Sometimes I had no side effects! It varies. You will do well. Keep the positive attitude!😀
Good luck with the house and enjoy Rehoboth!
Where are you getting treatment?
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Wabals, I am getting my treatment through the University of Michign Breast Cancer Center. Before I left, it looked like they had their second ATTEMPT Trial participant. They were just waiting on the outside lab verification
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Newly published study on Her-2 testing.....
"We re-evaluated HER2 status of all samples for the current study by using FISH according to the new ASCO-CAP guidelines, which separates in situ hybridization (ISH) into five groups..."
http://jco.ascopubs.org/content/early/2016/08/25/JCO.2016.66.6693.full
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You are a long way from home at Rehoboth Mlpat
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Hey girls, I am "new" to this thread, actually not so new as i have been following this thread for a while:). I am also in the ATEMPT trial and just had my first infusion last friday. The first day was uneventful, but the second day i started develop a bad stomach pain, prilosec seemed to help calmed it down. By the third day, i was completely fine and went for a long hike. But today( the 4th day) i started to notice my palms and feet got really yellow, i am a little tired, but other than that i feel fine. I was wondering if i should be concerned for getting jaundice.
I am with Hopkins at Sibley hospital, my nurse told me that one of her patients came from FL, and i think that must be Wabals:)
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Welcome kitchengng.... Check with your research nurse on the stomach pain and now possible jaundice. T-DM1 can affect the liver. Liver enzymes are followed closely during treatment. Your nurse will be your advocate through the coming months. Might as well get that close relationship going! Maggie
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kitchengng
Cannot believe you are at Hopkins/Sibley! I just missed you! Alice and Mary were the 2 RNs I got to know best. Love both so much! I had a great experience at Sibley. I actually did commute from Fl for much of my treatment. We live in Leesburg, Va half the year. Where do you live?
As for jaundice, I doubt it after only 1 treatment. It usually shows up in the whites of your eyes first. But check to be sure. Is your Doc Karen Smith? Love her!
Good luck with your treatment. You are in the new building too. I was done right before they moved.
Keep in touch. PM me if you want to😄
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Wabals
I can't believe we have the same doctor, Dr. Smith is very nice. Mary was my nurse too, she's awesome! The new building is so nice, it's like a 5 star hotel:). I live in Great Falls, VA, not very far from Leesburg.
I know to get Jaundice after once treatment is not very likely, my palms are just a bit too yellow. I will check with my research nurse (Ruth, I am sure you know her as well) tomorrow to be sure.
Let's keep in touch, i will PM you as well.
Kit
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Hi Kit,
Yup we have the same team! Ruth was my research nurse also. She lives in Sterling.
What day do you have treatment?
Anne Lee
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Hi everyone! How are you all?
I've been experiencing joint pain onlyin my fingers/knuckles during the night while sleeping and for about an hour or so after waking. I began to notice it in July after #16 for a few nights and ever since I completed #17 in August it is every night/morning. I have been on Tamoxifen since January and in August I received my first Lupron injection. Not really sure why or what to do about it, except talk to my MO in two weeks. Has anyone else have joint pain?
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Hi Tiny Dancer,
It seems like most treatments we take can cause joint pain! My hands and feet hurt at night, and I have numbness in my toes. I'm taking Aromasin, and my MO said there might not be any help for my thinning nails because "we've eliminated every shred of estrogen in your body, and you can never, ever take estrogen again." Also I'm losing a little more hair than before when I wash it
Small price to pay, I guess, but not what we were expecting, right? I hope your problems can be resolved. I hate taking Tylenol at night, but at one point, sleep was getting interrupted by the pain.
Hope, whatever the case, that we both can keep on dancing
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Joint pain - yes. And like you I found things were hardest at the end of treatment. I was much improved at 3 mths after last infusion... Started back to my full gym routine by 6 mths. after. Have my 9 month (actually by the calendar it is 10 mth) post chemo onc visit next week and have no residual joint pain. I am er/pr-, so not dealing with any of the hormone related meds. My issues were T-DM1/rads induced only. Have very few reminders these days!
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Ozoner, thinning hair and nails, yep I have that too, even though I am taking Biotin. We are hoping the Lupron is getting rid of my estrogen, if not, then my ovaries will be removed.
Maggie, yes I agree it's hardest at the end of treatment.
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Hi everyone,
So good to hear from those of you who are done! Sorry about all the continued SE's though, especially joint pain. I have #16 next Tuesday and so will be finished in one month! I'm so excited and relieved to finally be nearing the end, and yet ambivalent at the same time about no longer receiving ongoing treatment and not being checked on every 3 weeks. My follow-up will be every six months. Anyone else have conflicting feelings about ending treatment?
I have not experienced joint pain but have mild neuropathy (tingling) in my fingers. My fingernails are very weak; I was hoping this would improve once I finished. I have been on Tamoxifen since March with few noticeable SE's. I'll report anything new as I go through these last two treatments, and afterwards. I don't know if the nail problem is caused by TDM-1 or Tamoxifen, or both!
I'm starting the Livestrong exercise program in a few weeks - it's a free 12-week program offered at some YMCA's for cancer survivors. I plan to use it to help me get back to working out in the gym. Has anyone else done it?
It's so incredibly valuable and comforting to have this amazing group of women to share information with.
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Hi everyone--
I was lucky not to have joint pain or neuropathy as TDM1 SEs. As for the estrogen blockers, I'm on Tamoxifen, which I don't believe is associated with joint pain. The other ones--Aromasin etc.--definitely are. I do have one suggestion: when I started Tamox, I had a tingly feeling (not neuropathy--more internal) all over my body. My MO had me go off it for 2 weeks and then restart it, and the problem disappeared and never came back. My friend who has severe joint pain associated with Aromasin (or Arimidex) also was told to do this to "reboot" recently--not sure if it has yielded results yet, but this is something you could talk to your docs about.
SerenitySis-- you ask, Anyone else have conflicting feelings about ending treatment? And the answer is definitely yes. This thread has gotten so long that it's hard to go back through and look for specific comments, but several of us did discuss this anxious feeling of being cut loose. I remember thinking, "Who will take care of me?" But I assure you this is temporary--at a certain point you're just so thrilled to be done that you start to dance in the street.
About thinning hair and nails: I have what appears to be a permanently messed up thumb nail, but just one! Problem started during treatment. It's just kind of funny at this point. My hair is thick and I don't notice it being thinner, but it is definitely not as curly as it used to be in humid weather. It's more consistently just wavy now--I used to have ringlets in humidity. Not sure if this has anything to do with treatments or is just what happens in menopause. That's a big question that hangs over things for me, like my weight gain--is it menopause or aftereffect of treatment? No clear answers.
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Hi Everyone, I just had Treatment #3 and only slept 12 hours afterwards instead of 15. I'm up an hour or two and then have to go back to bed for an hour. My stomach isn't as sensitive today, so I am being careful and eating small amounts every few hours. Liver enzymes while still elevated are not any higher than after the first treatment and all my other blood work is good. All in all they are very pleased with where I am at. I now have my Radiology referral so that will be the next step. Any words of advice for getting through radiation therapy?
The biggest SE that I am experiencing now is the dry mouth. I cannot go anywhere without water or some hard candy to suck on. I have to keep water on my bedside and end up having to get up several times a night to go to the bathroom. WIth the cooler weather and the windows open I am sleeping better. Unfortunately I have fall allergies and have been holding back on the antihistamines since they create more dry mouth but I caved in today and took some Zyrtek. We'll see if it gets worse.
Kit - Welcome to the group.
Wabals - My husband is from Delaware so most years we go to see family and spend time in Rehoboth. For a few years we were further down the peninsula and stayed with the entire family in Chincoteague.
Serenitysis - I'll have to check out the Livestrong program to see if we have one locally. In the meantime I am trying to get out as much as possible to walk.
I'm starting to wane so I'll sign off
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My short visit last week for a checkup with the onc encouraged me, but I was also sad. Like a club to which you no longer have a membership. And, like Isabel/Archer and SerenitySis, I felt let down and a little apprehensive about ending treatment--something that's still occasionally lurking in my mind.
MIPat, I got some relief from dry mouth with Biotène mouthwash--tastes great and when I used it at bedtime, I didn't wake up with my mouth totally dry. I think they also have toothpaste. A friend bought me some moistening mints for chemo patients,but they were so strong I quit using them. Sort of like orange and camphor.
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MIPat--My dry mouth was very bad at one point--I couldn't even hold a long conversation. Went everywhere with a water bottle and hard candy or gum, as you say you're doing. The good news is this intensity of dry mouth didn't persist for me--you're still early in treatment and there is a good chance it will get better.
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MIPat - I experienced dry mouth somewhere around my 3rd treatment too. I've completed 6 so far and 7th is next week. My nurse recommended rinsing the mouth with baking soda 2 to 3 times a day. It really helped. But after a few weeks I didn't have dry mouth any more. Hopefully your dry mouth will get better too.
I'm done with 22 out of my 25 radiation sittings. Last one is scheduled for Tuesday. The first three weeks went very well - not much in terms of side effects except some darkening of skin. But after that I've been feeling the fatigue set in. The last 10 days or so, I feel the mid-afternoon slump. Around 2 pm, I need to take a nap -- don't always get to. By late evening energy is better but feel the need to sleep early. The skin in my underarm area is the one that has turned the darkest --- even though no nodes were positive and underarm is not being radiated --- it just falls in the square area being treated. I've been using aloe vera, calendula cream and for the last few days some aquaphor in the areas that are most sensitive (on the side where the arm touches the breast).
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Serenitysis - congrats on making it to #16 without many SE's. Yes, I had conflicting feelings ending treatment. I really miss the nurses. I wish my fingernails would grow stronger and not be so weak and bendy.
I joined the Livestrong program back in January and I really liked it. It was something fun to look forward to and meeting new people. I arrived at least an hour earlier before class to exercise and I also joined in the Yoga, Meditation, Tai Chi classes too.
Ozoner - "Like a club to which you no longer have a membership." Yes I totally agree! I want to go back, but I just don't belong there anymore.
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I faired better after my 3rd infusion. The next one will be October 4. Earlier that day I will have my Radiation Simulation. I will have 6.5 weeks of radiation therapy - whole breast and then targeted. My Radiation Oncologist is worried about the fatigue aspect since I already have about a week of fatigue after my infusion. I have rotator cuff tendonitis in the arm that I have to hold up so I am getting in as much PT as I can and taking an anti-inflammatory.
I found that my "positive attitude " was low after the last infusion. I started focusing on the 1/3 of the next year will be lost to fatigue and nausea. Probably the stress of radiation starting contributed to it.
Did anyone find their memories affected by the Kadcyla? I am forgetting so much if I don't write it down. And then, I forget my list when I go out. It is getting a bit frustrating
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MIPat, I don't remember (hah!) having memory problems during TDM1 treatment, but in your case it may be a result of the week of fatigue? As for the positive attitude thing--nobody can keep it up all the time. It's simply impossible. You can only do the best you can. Try not to look ahead too much and take things one day at a time--cliche of the century, I know, but it's a cliche because it's true, and I found it to be helpful. The other thing that helped me is always keeping in mind how lucky I was to have found the cancer at stage 1. I mean, it ain't lucky to get cancer, but on the cancer spectrum, we were indeed more fortunate than others. It's a continuous balancing act between feeling like crap, and scared, and overwhelmed on one hand, and on the other hand feeling hopeful, fortunate, and ready for what comes.
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The following article about the ATEMPT Trial and Kadcyla was in today's Hartford Courant: "Drug Offers Hope in Minimizing Side Effects Of Breast Cancer Treatment".
http://www.courant.com/health/breast-cancer/hc-bre...
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Thanks for sharing the article. I keep watching for preliminary data coming out via professional meetings... If the news is good generally don't have to wait for the trial to end to have a peek in the box.
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Had #17, MY LAST ONE, on Tuesday. Can hardly believe it's finally over. You have all been such a big help making it through. Taking stock of how this has affected my life. Glad I'm done, but anxious and ambivalent about the transition.
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Serenitysis, YAY! Congratulations on completing all #17! You must be so excited!
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SerenitySis-- HOORAY! I think within a couple of weeks you will be on top of the world. Mark your calendar for when the next treatment would be and celebrate that YOU DON'T HAVE TO DO IT ANYMORE! Remember you'll be seeing your team every 6 months, so they'll be taking care of you as you move forward--you're not alone out there.
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Serenitysis
YAY!
The anxiety will subside. Trust me. I had it too
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I know I don't post often, but I follow this thread often and appreciate the information! I was just going to post that article http://www.courant.com/health/breast-cancer/hc-bre...
But saw it was already posted! I always ask my trial nurse and oncologist how it is going. at my last appointment a couple of months ago they seemed very optimistic, patients doing really well, not many dropping out due to side effects (not that there aren't side effects, but most are able to complete the trial). They still don't have the enrollment they need but it does seem like other centers are opening.
As a side note I was apparently the second person to complete the trial?! Now almost 4 years from diagnosis, I'm thrilled to say I have a happy healthy 4 month old baby (I was diagnosed with when my son was 9 months)so I'm very grateful to have participated in the trial, and can honestly say that as scary and awful as it was, I really feel that the fear is much less as time goes on.
You are all so strong and I really appreciate reading your posts and the sharing of information even though I don't tend to post as much. Thank you!
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