ATEMPT Clinical Trial - Roll Call
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MIPat .... So glad you've joined the thread. Waiting with you to learn which arm of the trial Ms Computer assigns.... What can I say? Well, guess the first thing that comes to mind is you'll always find support here.. just might take a few hours or so for a response to show up... Maggie
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Thank you so much Maggie. I am very happy to be part of this group of strong women
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Maggie-- To answer your question about how we found the trial: It was recommended to me when I went to Dana Farber for my second opinion. The first onc I saw locally in upstate NY had no idea it existed or that the prescribed standard of care was about to change for stage 1 HER2.
MIPat-- waiting to hear which arm of the trial you're assigned to is very nerve-wracking. The great thing is that all of us--whether getting Taxol/Herceptin or TDM1--are benefiting from very recent updates in stage 1 HER2 treatment guidelines (which happened to occur just as I got my diagnosis 3 yrs ago). Before then you would have been given a much more difficult chemo regimen. My cancer diagnosis has led me to bright-side thinking--I hope down the road a bit you will get there too!
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MIPat welcome! I still don't know what arm of the study I'll be assigned too... Definitely nerve racking. I was suppose to start treatment tomorrow and I was hoping I would know by today. Unfortunately my tissue sample was equivocal, so now they need to FISH test it to confirm the HER2 positive test... So the waiting game continues and the treatment gets delayed. Not having a great day. I took the week off from work to mentally and physically prepare and now I'm here not knowing anything more. Well at least I'll be well rested for next week, but will need to take a day off for treatment and work the day after treatment #1...
MaggieCat my MO told me about the study and was pretty excited about it, he didn't pressure me to pursue it, but he did speak very highly of it. I was happy to consent, but now I'm struggling with the delay in treatment due to the tissue sample having to be retested. Did anyone else have that happen?
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yes, Tee2 I was delayed as well. Nothing equivocal, just took them a long time to get the tissue block to Dana Farber to confirm the Her2, and then they took off around Tgiving so randomization was delayed as well. Drove me nuts! Surgery was Oct 9 and first chemo Dec 2nd - dates seared into my brain! Looking back, it was only about 7 or 8weeks but it felt like an eternity! When I ended up on the Taxol arm I was pissed as I could have started that two months earlier.
I found the trial on my own (clinical trials.org), called the lead investigator at the closest study site (UCSF) to confirm I might be eligible and petitioned Kaiser to refer me. First oncologist said no, the second (both Kaiser btw) thought it was a great idea. She referred me and remains my Kaiser oncologist.
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Tee2 & MIPat - Would you share your diagnosis ( bottom of page info) by going to your profile and clicking on public? Are you ER+ and/or PR+? etc.... On delays... TTfan and I were both caught up in the Thanksgiving holiday delays in Nov/Dec 2014. This too shall pass! Maggie
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Tee2-- I had a different kind of delay: after my diagnosis in May 2013 I had to wait till July 9 for my mastectomy because of insurance issues. Thought I would go INSANE--just wanted to get it over with. We all go through SO MUCH--there is variation in the problems/issues, but we are united in undergoing extreme stress, anxiety, sadness, and all the rest of those feelings because of stupid, stupid breast cancer. I felt much more balanced once I started treatment (in September).
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MaggieCat - I've changed the diagnosis to Public.
Isabel - I know what you are saying. I realize how fortunate I am. My cancer was found early on my annual mammogram. Even though the core biopsy came back negative, they told me up front that it was highly suspicious and booked me for the excisional biopsy. I am fortunate that it occurred at this point in my life and not 10 years earlier. And even though things seem to be dragging on slowly, it is only 25 minutes to the University of Michigan where I am being treated. The diagnosis is a bitter pill to swallow, but with Tarageted Therapy available, we are fortunate.
Tee2 - I can imagine the frustration of an extended wait - let's just get this thing going. Tuesday 7/26 I am supposed to get my port with treatment starting later in the day. I had my echocardiogram on 7/18 (my birthday) and I suppose that they are waiting on the verification of HER 2 status. It would be nice to know which arm of the treatment I am going to be on before I show up for infusion. We are trying to get our house ready to put on the market and unfortunately, because of the cancer, we are behind. I am trying to get the painting done before I start infusion therapy That, and two kids have been great distractions during this time.
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MIPat--distractions (your kids and house-painting) are sanity-saving. My distraction was looking forward to a two-part family wedding, one in the States and one in the Caribbean, at the end of the summer. I was determined to be at both of them, looking good in dresses and a bathing suit (and I succeeded!), and this helped me get through the anguish and anxiety following BC. About the port--I just want to mention that I had infusions in the arm for a year and had no problem (despite my small veins). This is certainly not the case for all women, and some prefer the port. It's a personal choice but not every hospital offers you the option right off the bat, but I just thought I'd mention this. I hope you find out which arm of the trial you're on before the first infusion.
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Tee2 Now they've moved everything back 1 week to August 2. The trial nurse said that once the other lab receives the specimen, it takes 5-10 days to get the results back. With port placement, doctors visit, and infusion, it will be an all day affair so now we have to rescrabmble to make arrangements for our kids. While frustrating, it gives me more time to work on our home since we've already bought our new home. Also I have rotator cuff tendonitis and I can get a few PT sessions in to help.
Isabel, distrations are a blessing that is for sure. I has given me little time to focus on "the cancer" and helped me keep my sanity. For a year's worth of infusions, my MO and Nurse Practioner felt that the port was the best choice. I have bad veins and agree with them. I've taken care of a lot of patients with ports and none of them regretted getting one placed. W
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MPIT, I have a port. I did not want one at first. Since I don't have very good veins - usually two sticks just to draw blood - I thought it would be a good option for me. I'm happy with my decision to get it.
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MIPat-- Understood! (about the port decision) And I'm glad you'll be able to make use of the delay to get more work done in your house.
A story having nothing to do with stupid cancer: It's unbelievably humid here today and very hot, but I had to get some weeding done in my garden. I decided an odd-looking plant that I don't recognize must be a large weed, so I pulled it. Then, practically fainting from heat, I went in to take a shower. Afterward, it dawned on me that last year I had planted a very late-blooming anemone called Honorine Jobert--something I bought at a home plant sale. After my shower I ran out to rescue the plant from the wheelbarrow piled with weeds and replanted it--in a better spot--and got dirty and sweaty again. ;-) The joys of gardening! On that note, have a good and serene weekend, everyone.
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MaggieCat: I had read about this trial during research after my initial diagnosis with DCIS. But I wasn't identified at HER2+ yet and so didn't look into it further. After surgery I was diagnosed as Stage 1A and HER2+. Neither my oncologist nor second opinion at Kaiser brought up the trial. My third opionion at UCSF was when I was offered Taxol or the option to enroll in the trial. I was happy to opt in.
I've been through my share of delays as well. Before the trial, tried to visit multiple doctors within Kaiser to see if anyone would recommend me to the trial - they did not. Finally was able to get secondary insurance to cover the trial - but then there was a mix-up and the initial biopsy sample was sent to the study and this sample was not HER2+ (DCIS). This was pushing the date close to 90 days after surgery beyond which I could no longer participate in the trial. It was nerve racking. Treatment #1 was scheduled for May 20, had chemo teach on May 19, and only found out at 5 pm on 19th that I was assigned to TDM1.
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Hi all,
So this past Thursday the results from the FISH test came back positive for the HER2 receptor, so I became officially eligible for the study. I was very happy with news! On Friday (yesterday) I was randomized in the taxol/herceptin arm... Let's just say I cried. A lot. I thought I could handle it and always believed I would be happy with whatever I got, but I cried. I was upset and sad, and just felt so defeated. I'm not sure where all these emotions came from, but it took me by surprise. So this Wednesday begins with week one of chemo/herceptin. I'm happy that I have a plan and I am trying to look at all the upsides to the standard care treatment. I guess it was my destiny. I've accepted it. So those who are in that arm or did that arm, how bad is it? I know it affects everyone differently, but any advice or personal experiences would be great. I have a wedding in LA around week 11... That would mean a plane ride from Boston... Is that feasible or do I just skip it :-( I'll talk to my MO and nurses too. But you guys are the "experts" you have been through this horrible nightmare.
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Tee2 - Please send a PM to TTfan. She's our go to for the taxol/herceptin arm. Just need to hit her with the PM and she'll be there for you. .. Maggie
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oh Tee2, how I know that sinking feeling! Hugs to you! Please feel free to pm me with a phone number if you wish so we can chat. I'm more than happy to share my Taxol experiences and where I found support. There is so much bad news in the process of diagnosis and treatment choices, I know this feels like one more nasty bit. It will be ok though and you will have lots of support
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Thanks MaggieCat and TTFan. It is a sinking feeling. I will pm you. Thank you for all the support so far!
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Tee2 I am so sorry for this disappointment. I will keep you in my prayers
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Tee2-- I too am sorry for your disappointment, and I know I would also have cried though I had tried very hard to be prepared. TTFan will I'm sure be a great adviser for you. This may not be the right time for "at least" thinking, but...at least you KNOW you're getting the standard of care for early HER2 and that current standard of care is an easier chemo regimen than just 3 short years ago. Sending you my best.
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Thanks everyone for the kind words! I was defiantly disappointed, but I have totally embraced and accepted the standard care arm. I go in today for treatment #1! Can't wait to start and get it DONE. I will keep you posted throughout my journey.
Thank you for all the support!
#cancersucks
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Tee2, I know you are disappointed. I tried to prepare myself for either arm by knowing I will be getting the current standard of care for early HER2+ breast cancer, and that it will be much better and easier than the standard of care that was recommended for the last few years. Good luck today with your first treatment. Keep us posted.
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Well, I am one step closer. My tissue was acceptable for the trial. I'm going to run over to get some additional blood drawn and then I will know. This is taking so long! I did find out that the University of Michigan joined the trial in December 2015 and are suppose to enroll 20 participants. The two prior to me had their tissue rejected for some reason, so if my blood work is ok, then I will be the first participant for U of M. My luck, I'll get randomized to the traditional arm. It would be disappointing to them and me
Tee2, hope that your day wasn't too rough.
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MIPat - One step closer!
Tee2 - Sending hugs your way!
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Tee2, welcome to the trial. I'm sorry for your disappointment. I thought I'd be fine either way, but when I was randomized to TDM1 I was so relieved. I really wanted to keep my hair!
That being said, 13 treatments/8 1/2 months in (4 treatments left to go!!!), I'm quite tired of this every 3 week treatment schedule. I have about a week of feeling "off" after each one, mostly fatigue and loss of appetite. I sometimes wonder if it would have been better to get it all over with early on, rather than dealing with a full year of SE's. So there are pros and cons to each, and either way, cancer sucks!!
I'm happy to be in the trial & to have this great group of women for support! Best of luck and keep us posted!
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That's wonderful news MIPat!! Stay positive! Either treatment arm will be fine, I wish you the best of luck and I hope you get TDM1. That waiting game is the worst.
Unfortunately I had a pretty serious adverse reaction to Taxol yesterday. I won't share the scary details I experienced unless you want me to. The good news is I feel much better today and Herceptin was successful! Just some minor heart burn.
Next week I will try Taxol again, this time I will pre-medicate heavily on steroids the day before and day of my treatment. I pray it helps. My biggest fear is it won't and I will need a different chemo, which will most likely mean I am removed from the study. I'm not sure if the study would then allow me to switch to TDM1? My guess would be no. I sent a LONG list of questions to my MO and study nurse today asking that and many other questions.
Sorry to share such horrible news. Like everyone has said, it can affect everyone so differently.
Just ANOTHER bump in the road. Cancer truly sucks.
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Tee2 I am sorry to hear that the Taxol didn't go well. Hopefully premedication will help. I was shooting up prayers during the day for you and will continue to remember you on Wednesdays.
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So sorry Tee2. I had read about this possibility and then saw it first hand when my best friend had a severe allergic response to Taxol for ovarian cancer. It can be very scary! There are three ways I know of that this is handled. One is what has been recommended to you, trying again with serious steroid and antihistamine preload - this often works. The second is to try a drug called Abraxane, which is the exact same chemo drug, but without the preservative that is in Taxol. Since it is much more common to be allergic to the preservative than the actual drug, this works for lots of people. And the third is to switch to Taxotere, a different taxane drug that seems to be equally effective, but with a far lower risk of allergic reaction.
My friend reacted again despite the preload (though the majority do well with this!), and was changed to Taxotere. I don't know why they didn't try Abraxane. She is on clinical trial as well (different one than ours, of course) and they kept her in the trial since most studies use "intent to treat" as the way they look at results. In other words, the intention was to use Taxol, but for medical reasons that was impossible for her, so they used an alternative and will keep her in the Taxol group of the trial to look at outcome even though she received a different agent. The point of the story being, even if you end up on a different chemo agent, you may well stay in the trial. They almost certainly won't switch you to TDM-1, studies have to stick to the initial randomization and TDM-1 isn't yet available for us Stage 1 women outside a study protocol.
I wish you a much more easy and boring experience the next round! Keep us posted!
MIPat - welcome! I wish you much calm and patience as you wait to know what treatment will be and get started! I think many of us found that limbo time to be far worse than anything that followed! I certainly did.
Everyone else, whether before, during or after treatment - know that I read your posts and am out here cheering with you as you get through each step toward your long and healthy lives!
As for me, I'm still struggling with how to manage hormonal therapy, but at the moment I'm off all of it and feeling amazing! The residual neuropathy still seems to be (very slowly but surely) improving and rarely interferes with every day life any more. At some point soon I'll have to make a decision about Tamoxifen but for now I'm enjoying a relatively drug free life!
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Tee2-- yikes! I really hope the premeds will resolve this problem. It's just unbelievable, the variety of challenges we all must cope with. Stupid, stupid cancer!
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Tee2 - Adding to TTfan's comment about alternate taxanes... Abraxane delivers the taxane dispersed in an albumin based liquid. It is more expensive and well tolerated. Insurance will cover the additional costs where indicated (and advocated) by the MO once the patient has gone through the steps you describe. Most patients that have your response with the first taxol dose are ok to continue taxol with the pre-meds and never experience another problem. Do take time between now and next Wednesday to educate yourself and be ready to advocate for yourself if you need to switch. And yes, taxotere is out there as an option but can cause permanent hair loss - lawsuits on-going against Sanofi for lack of disclosure for some number of years. Agreeing with TTfan - also wishing you a much more easy and boring experience the next round! Maggie
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TTfan and MaggieCat you both have been SO informative thank god for you guys!! What a great mini education session! But it sounds like I have a lot more to learn... Permanent hair loss! OMG! Thank you for sharing that!
My MO was telling me all about these different drug options yesterday post reaction and heavily medicated on steroids and benadryl, I was in such a fog and couldn't remember anything when I got home! I was so overwhelmed with the experience! Something I wasn't prepared for! I generally am not allergic to anything so I really wasn't expecting such a severe reaction. As I read your post I think this is exactly what he was telling me about, I just remember hearing about a similar drugs to taxol that was much more expensive, it must be Abraxane. It's nice to hear about the "intent to treat" option... Maybe they can keep me in the study if I have to switch, if they honor that. I also suspected they won't change treatment because of it being a randominized trail.
Hoping for that boring experience next Wednesday! I'll keep the group posted!
XO
Tracy
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