ATEMPT Clinical Trial - Roll Call
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Went to Indy today. My lab numbers were all good, except for my liver numbers. Very elevated. Mt stomach issues have settled down, which always seems to be the case the week I go for treatment. My MO is now considering the possibility that the TDM1 is causing my pain and the recent liver elevation. She decided to not give me the infusion today. I will return in 3 weeks. In the meantime, Iam getting the upper endoscopy procedure tomorrow to rule out any other involvement.
Maggie, I hope you are having a much smoother experience. Johara, hoping your treatment is uneventful as well.
By the way, I lost another 11pounds.
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Bernie, i'm so sorry to hear you're still having such trouble. It must be frustrating to not know what the pain is coming from. I sure hope they figure it out soon so you can get back into treatment feeling better!
Maggie, hope your recent infusion went better than the first time!
As for me, I'm plugging along with the expected side effects of Taxol. Pretty tired of being bald, and trying to make myself look good at work. They told me the fatigue was cumulative, but I didn't really notice it getting that much worse until this last treatment. This #6 kicked my butt in a way the others didn't. I really struggled to get through my day at work today. I'm so glad I'll have the next three days off!
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Bernie....How did today go? Any insight?
Johara..... You are coming out of the woods at this point!!!!! Congrats on making it past the halfway point.
My second infusion (30 minutes) brought with it some different opportunities! Walking out of the infusion center I felt like I had been hit by a MAc truck! My joints and muscles ached, starting with my shoulders and upper back. Grabbed a benadryl from my new Chemo bag. The benadryl helped!
The first infusion I used my hippy style diaper bag from the mid-70s. It was supportive in thought but not very useful for the purpose. So I went looking for something more keeping with the need and found a Kate Spade Weekend bag in a wonderful teal color. At a little over $5 a month for the year, I figured I could treat myself and burn it in the December 2015 celebration bonfire with all the other chemo related things. I'm not one to wear button up the front shirts (post retirement). So the obligatory front buttoned chemo shirts will be toast for sure!!!!
Hope you find the weekend relaxing!
Maggie
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As I suspected, the scope revealed nothing. No ulcer etc... The dr mentioned prescribing a medication to soothe my stomach for the next chemo infusion. He faxed it in, and I haven'this picked it up yet.
I was able to eat after the procedure. Slowly getting back into that groove.
Have a great weekend - bernie
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Maggie, sorry about the pain this time, but glad you figured out to try the Benadryl! I'll remember that if I get pain on the triple Herceptin dose, seems quite a few people do. I love the chemo bonfire idea!
Bernie, so glad they didn't find anything bad and that this time is better so far. Hope the new med keeps it that way! Does the TDM-1 affect your taste buds? Taxol makes everything taste a little nasty, it would be hard to eat extra like you need to right now so I hope not.
I am glad to be half way through Taxol! I actually went to the gym today, a very wimpy workout, but at least I got in some stretching, a few weights and some gentle treadmill. Felt good especially because I had a really down day Thursday, just queasy, foggy headed and truly exhausted all day. And of course it was the one day at work with meetings I really couldn't get out of. Got me thinking I might need to take more than the one day a week off I've been taking so far.
With our little group of three Atempt-ers, I have to say I feel like I have gotten pretty lucky. I thought the control arm would be much tougher than the TDM-1 arm, but you guys have had more than your fair share of difficulties! No walks in the park for any of us, but we will get through and be so glad we did it!
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Bernie/Maggie - Saw this post from another T-DM1 person on the BC.org site..... More than just you with abdominal pain....
I also had abdominal pain after my 4th tx. It started as stomach pain, then went to my back, up to my shoulders and then my chest. So for about 3 hours I had pain in my entire torso. I didn't know what to take, so just tried to sleep and it was better the next day.
I talked to my chemo nurses and several of them never heard of such pains, but finally one nurse said that she just had a patient with the abdominal pains. And it is listed a one of the side effects.
So now I know that I can take Motrin if it happens again, but it hasn't.
I just had my 10th tx of Kadcyla on Friday, and no more pains.
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Hello, like Emily this is also my first post. I started the ATEMPT trial in Sept. 2013 at Dana Farber and was assigned to the TDM1 arm of the trial. Overall it was a good experience, though I had many more side effects from TDM1 than were expected. The chemo element of the drug seemed to "break through" in my system and cause SEs similar to traditional chemo. I had nausea after every infusion, beginning that night or the next morning, which lasted for 2-3 days. It wasn't terrible but it wasn't fun, either. I refused Zofran because of the constipation risk, and because Compazine completely zonked me out I didn't like taking it, so basically I just powered through the queasy days. I also had runny nose (which got better after a couple of months), pretty severe dry mouth throughout, as well as two episodes of mouth sores (the prescription mouthwash took care of it), and cracked/ridged thumbnails. My major problem was low platelet count, with bloody nose and bruising. Because of this, I had two dose reductions, but finally, in April, after 7 months on the drug, my doctor took me off the trial. I finished out the treatment year on Herceptin--no problems there. I never had a port even though I have small veins, and I felt very well cared for at Dana Farber--a fantastic hospital. I drove three hours each way, every three weeks, for a year, and it was completely worth it.
My platelet count is slowly climbing but even now, 8 months after stopping TDM1, it is still way off from normal. Before treatment I was at 155K; it went down as low as 63K; and now it's at 108K. My onc referred me to a hematologist, who believes it was either a drug SE (though my onc doesn't believe it still could be doing this to me) or a hidden infection that may have coincidentally lowered my platelets. All my other counts are normal so he is not worried and told me not to worry. I did have Lyme disease over the summer (as a witty friend put it, I had cancer with a twist of Lyme!), so that may be a factor.
My initial DX was high-grade, multifocal (meaning all over the place) DCIS and Paget's disease. Had a mastectomy in July '13, and tissue analysis showed--surprise!--3 tiny tumors of HER2+ (1 cm was the largest, the others a few mm). Node-negative. Tissue expander/implant in Jan. '14. Feel incredibly fortunate to have discovered this stuff before it spread.
I have been wondering if other women are having lingering low platelet count after finishing the trial. My case was apparently so unusual that I was the subject of conference calls among docs and nurses at DF! I was a star! ;-)
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Hello Isabel... Thanks for sharing! The SEs are so varied. It helps me to have your info moving forward. I'm just starting. My older sister died from leukemia at age 11 (1957). Now forewarned about impact not readily known. Of note, before trial acceptance, my MO ruled out cyclophosphamide based on small leukemia risk. Can't thank you enough!!! Maggie
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Maggie, just want to be sure to clarify that my SEs were unusual. Every woman responds a bit differently, but overall I do think TDM1 (Kadcycla) is a fantastic drug. We are incredibly fortunate that the research has led to great options for HER2+. I wish you the very best, and themost minimal SEs!
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Got to say I have the "everyone is different" down pat! A must need to participate! I'd hit a like button on your comment if it were available. Full disclosure... retired research chemist with part of my career spent in pharmaceutical industry. Even if one data point... it is helpful!
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Isabel... Even if only one data point... it is important!!!! Thanks
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Thanks Maggie for sharing the post about the participant with abdominal pains. I wish mine would only last a few hours and nor 7 - 10 days straight. I will try motrin and see if that helps, if it happens again.
So far, I am feeling great and eating well since the chemo was skipped on 1/8. I am really curious as to see what the MO has planned for me next visit on 1/29.
Isabel - thank you for sharing your experience. My platelet count is sky high at 495. It typically stays at 490 to 495 so far. I know you have to be so happy to be on the other side of treatment!
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Bernie--your stomach/abdominal pains are quite a mystery! TDM1's effects on my stomach were nausea and a slightly suppressed appetite, but no pain. Thank goodness all the tests you had showed that nothing else is wrong. Isn't it amazing how you have sky-high platelets and mine were in the ditch! ;-) I do indeed feel happy to be on the other side of treatment--I enjoy every day of life. I even go whole days without thinking about stupid cancer! That is a huge thing for me--and you will definitely get there too.
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I am so looking forward to not thinking about cancer every day! Spent most of last night and this AM in the bathroom with diarrhea. Yesterday was nausea and heartburn all day. So much for Taxol being chemo light! (What the UCSF MO called it). I have tickets to a Sharks game tonight with my kids and am determined to get there whether I OD on Imodium or not!
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This is my first post....waiting to see if selected for T-DMI / Atempt trial at DF. Will enroll if selected. However, curious on thoughts for what to do if not. I only need herceptin and not sure why it can't be given without taxol. Is it worth the SE to raise the non-reoccurrence rate from 95-96% (incl radiation and tamoxifen, no chemo) to 98-99% (taxol, herceptin)? I'm trying to not get ahead of myself in making that chemo decision until I hear about getting into trial, which I would do for the year. 45 yrs old, 2 kids, married. Lumpectomy removed the 3 ml site
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TTfan, we so hope you got to the game with your kids! Let us know how it went!
Welcome to BCO, Boston45. Here is an article that may interest you.Herceptin and Taxol
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thank you for the article. Yes, I saw a few from DFCI, where I will be getting treated. With limited data on small tumors, I struggle with the chemo side effects when I only need herceptin. Sounds like it's better to so the chemo than not do it. Curious if anyone else had to make this decision (triple positive)?
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thanks mods for the good wishes! I did make it and despite the overtime loss, had a good time, bathroom trip free!
Boston, I went through the same dilemma as my tumor was only 4 mm and triple positive. . There is no hard evidence that Herceptin without any chemo is helpful, it is always used in combo with at least one chemo agent in studies. TDM-1 is Herceptin linked to a chemo agent so really both Atempt arms include chemo in some form. Most studies did not include enough women with < 1 cm sized tumors to be able to say whether <5mm vs > 5 mm really had a recurrence difference. Lumped together Herceptin plus chemo did cut recurrence in half as you say. The 95-96 % non reoccurrence rate may be cherry picking the studies a little bit. Some said closer to 91-92%. So we're stuck balancing chemo risks vs a very low risk of mets.
Only you can decide what is worth it. Since almost all chemo risk is reversible and mets aren't, I chose the chemo route even though we are lucky enough to already have very low met risk without it . Other perfectly reasonable people would not have. Oncologists differ in their advice to us as well. I can say that even having a tough day yesterday SE wise, I did not second guess my decision. Best of luck with yours!
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Boston.... Hello.... Here are a couple of articles that helped me sort through things... My MO would be Katie Reeder-Hayes. We were two ships passing in the night... She's on maternity leave now.... and I am working with an amazing MO in her place. TTfan brings up a good point about the disease free percentages to keep in mind as you think through things. Hope this helps. Maggie
How Low Should We Go? The Search for Balance in Management of Small Human Epidermal Growth Factor Receptor 2–Positive Breast Cancers
Combination Trastuzumab and Chemotherapy May Have a Role in Women With Small, Node-Negative, Human Epidermal Growth Factor Receptor 2–Positive Breast Cancer
- Corresponding author: Heather L. McArthur, MD, Memorial Sloan Kettering Cancer Center, 300 East 66th Street, New York, NY, United States, 10065; e-mail: mcarthuh@mskcc.org.
http://jco.ascopubs.org/content/early/2014/11/20/JCO.2014.58.2965.full
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Boston45: To your question about why women with stage 1 HER2+ aren't given the option of Herceptin without Taxol, the answer is that Herceptin-only treatment has never been tested in a clinical trial. My oncology nurse explained to me that so far no researchers have been willing to take the risk of giving Herceptin only, then finding out that those patients would have more recurrences than patients given Herceptin plus Taxol. The clinical trials are designed to be as safe as possible for those being experimented on.
I was stage 1b (largest tumor 1 cm, two others a few mm, two of them triple pos) and got three opinions from oncologists as to what to do. Local onc #1 said I needed ACTH--the toughest chemo regimen for BC. I ditched her as fast as I could because it made no sense to me that I would be treated the same at stage 1 as if I had stage 3 or 4. She was ignorant. Onc #2 at Dana Farber said I needed only Taxol and Herceptin (TH) or TDM1 if randomized to that arm of the ATEMPT trial. She said: "You could walk away from treatment entirely, and it would be a rational decision." She gave me that option. However, I never considered that option--if there were cancer cells lurking somewhere, I wanted to kill them. Onc #3--a major figure in the BC world, at Sloan Kettering--confirmed onc #2: TH, or the clinical trial, or nothing. But he said, and this really clinched it for me: "Without any treatment, your prognosis is very good. With treatment, it's spectacular." Those words have rung in my ears ever since--I will never forget them.
I was randomized to the TDM1 arm of the trial and am very happy to have received treatment. But if I'd been randomized to the Taxol arm, I was ready and willing. I've seen two friends go through very tough chemo regimens (one ACT, for triple neg) and one TCH (that's Taxotere, not Taxol; for ER+ node positive), and as difficult as it was, I've also seen them come out the other end, put it behind them, grow new hair, and move on.
I wish you all the best in making your decision. I'd go for the treatment.
Btw, I was diagnosed at 51. I have two kids. My mother was diagnosed at 58 and died of metastatic BC at 69 in 1994--I'll never know if she had HER2+ and if Herceptin could have saved her life.
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Welcome Boston45. Let us know if you are accepted into the ATTEMPT trial.
I started Rads this past Thursday. Fairly quick and easy so far. I go back to Indianapolis next Thursday. I can't hardly wait to hear the MO's plan for me now.
Have a great weekend
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Thank you all so much for your comforting feedback. I am starting the ATEMPT trial next week (at DFCI) with T-DM1. Any advice on what I can expect that day and the week following the first IV treatment (Kadclya)? I'm trying to juggle life and have no idea how this will impact me, if at all (recognizing every situtation is different). And, if there are SE, when do they occur and how long do they last (e.g. fatigue next day?). Thank you.0 -
Boston... T-DM1 !!!!
I have a chemo bag that I put together between infusion 1 and 2. In it I have the filled prescription for a nausea medicine ( haven't used it), 25 mg generic benadryl ( I am using it), Systane eye drops ( used now and then), Aquaphor Lip Repair (used now and then), Aquphor Healing Ointment (used now and then), Emla cream ( applied to port area 1 hr before access), pieces of saran wrap (put over the applied Emla cream), and other things (tissues, moist towelettes, etc). I travel 2 1/2 hours for treatment so need everything with me.
First session for me.... First blood draw /access port ( 15 minutes) In the background the the blood is being tested ( ~ 1 hr), Second - MO discussion, check breast, and vitals. Your research nurse will be there. You'll fill out a form about how you are feeling, etc. Then onto the infusion, You'll get a drip of fluids while the kadcyla is being mixed, then get both for 1 1/2 hours, then be observed for 1 1/2 hours. Then home!
Did you receive written prescriptions to have that day just in case? Did you get any advice on supplements you might want to take ( or supplements you are taking that you should stop)?
Hope this helps! You've read our postings so you have an idea that reactions to kadcyla are quite different between individuals. For me I have a "typical" histamine reaction to the herceptin ( had to laugh -> nurse called it rhino-rea on Tuesday!!) which is runny nose and dry eyes.
Re-read your questions so adding: I'm fully functional within 24 hours of the infusion. The runny nose and dry eyes began about a week or so after infusion 1 and stayed. 25 mg benadryl twice a day is all I need to keep those in check. I am actively taking supplements and icing my hands during the infusion as a precaution against neuropathy. I had 3 days of slight tingling in the fingers after infusion 2. Not much going on 2 days after infusion 3.
Maggie
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I went to a Indianapolis today I wasn't sure what to expect. First of all, the nurse couldn't get any blood from my port. She had to order a medicine to inject into it to get it to work again. I have gained about 10 lbs back of the 20+ I had lost. I feel so much better. The doctor said I looked much better and had a plan for me. She took me off the trial. I will be getting hercepton for the remainder of the year. She gave me the 1st infusion today. I can also take the these treatments in louisville. I certainly hope everyone else on TDM1 has better luck than me!
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Bernie... So glad you are feeling better! I am aware of a change just like yours, a switch to herceptin only after 4 T-DM1 infusions. In this case there was a prior medical issue with pancreas function.... and the T-DM1 wasn't tolerated very well. My liver enzyme numbers are going up, at high normal now.
Really hope you will keep posting here. Maggie
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Bernie, I am so glad you are feeling better! The rest of this should be easy! I am sorry the TdM-1 was so hard on you, but at least you got through three months worth. Same amount of chemo time as the Taxol regimen. I wondered when I first looked at this study why there had to be a full year of the TDM-1 rather than three months and then Herceptin only.
Maggie, I hope your liver enzymes behave! If I remember the consent right, they will continue unless they go double or even triple normal.
Boston, congrats on getting into the trial and getting the arm you wanted! Best wishes for a bare minimum of side effects!
As for me, I'm much more comfortable rocking the bald look, finally was too tired to do work justice, so am off now. I feel so much better being able to care for myself more. I'm going to the gym, walking my 10,000 steps almostevery day, eating better and resting when I need to. Just had #9 of 12 Taxols so it feels like the end of this phase is finally in sight!
Be well everyone and keep posting your progress!
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MaggieCat, thank you for the details. No discussion with staff at DF when I booked the 1st treatment for next week about prescriptions. I guess I will ask when I get there. Traveling the follow week so am very curious what to expect and what supplies I need (your post was helpful). Hoping for no SE - no time for downtime with work and kids - but assuming that probably isn't feasible. Still in denial! I am also curious if the symptoms are worse once radiation starts in 9 - 12 weeks, doing both at the same time.0 -
Boston... One step at the time!!! I started in early December and am just now thinking about rads, and that is at least 7 weeks off for me... Maggie
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Boston45 (and other TDM1 ladies)--I was on TDM1 at DFCI for 7 months. I was taken off it because my platelet count dropped too low. My oncologist felt that 7 months was plenty of treatment anyway, and I finsihed up the year on herceptin. Someone asked about why ATEMPT runs for a year. It's basically just a guess, as my onc explained to me. They are giving it for a year because they give herceptin for a year. A few studies down the road this could easily change, but for now they don't know enough.
Boston45, about immediate side effects: I drove 3 hours each way for treatment. I was able to drive home after the treatments. So that gives you an idea of how fine I was! Once I got home I had fatigue for a day, and queasiness for a couple of days, sometimes more. I refused Zofran as part of the infusion because I felt I could manage the queasiness. I took Compazine for queasiness a few times . I had a runny nose, but big deal, you know? My chemo tote bag for treatment days had nothing in it but reading material.
Later, other side effects emerged, but at DFCI I was definitely considered unusual in this respect. Dry mouth, mouth sores, cracked thumbnails, and the platelet issue.
But I want to stress overall I was FINE and the drug did NOT interfere with my daily life. My kids were in college but even if still at home I'd have been able to care for them. I worked as many hours as before treatment. I had normal energy. I felt extraprdinarly lucky to be a recipient of TDM1.
Good luck!
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maggiecat=Did you do chemo or just radiation? What is the atempt clinical trial?
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