ATEMPT Clinical Trial - Roll Call
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Covid-19 Vax... I've completed the 2 dose Moderna. No issues. My dominant arm is the opposite side to BC node removal (sentinel node plus ~ 5 nodes were removed and checked during lumpectomy). If it had been on the same side I would have said my dominant arm was the one opposite the node removal. I would want the mRNA vax to go in the arm with a full complement of nodes to do the antibody work! My view is Covid-19 is bad news and I wouldn't miss a chance to get a vax. I may not have addressed the vax concerns you have. I do understand there are concerns, especially with immune compromised folks like us!
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Thanks Maggie. I always get the flu shot in my dominant arm opposite of BC and node removal. But in January, I got the first Shingles shot in my left. It took two days to realize my mistake and called my Oncologist and he didn't seem concerned. That was the first time in 5 years that I forgot about BC, I'm usually protective of that arm during blood draws, pressure and anything else. The second shot was in my right arm.
So, yes, when I decide to get the Covid Vax, it will be in my right arm - opposite BC. But I'm still concerned. The news reports are all over the place. The CDC just said that "there is no significant risk of catching it on surfaces". A 6 month booster shot may be needed. I know quite a few people who did catch Covid, ages 40 - 85 and they had flu like symptoms and were fine (I know it effects everyone differently and I wouldn't want it and I do my very best not to catch it). I think I will wait a few more weeks for more info.
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Tiny Dancer-- Just saw your message about the vax. I got mine as soon as I possibly could in my state--I got Pfizer. I am thrilled to have gotten the vax and encourage everyone to get it. I see no reason not to, honestly--it's a marvelous triumph of medical research/science, very much like the discovery of Herceptin and our own TDM1. It's true that most people who get covid don't die of it, or even end up in the hospital, but it's still much more of a risk to your health to get covid than to get the vaccine. I hope you decide to get it, or have gotten it by now, but in the end each person, of course, has to make the decision for herself. Good luck!
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To be eligible to participate in the study did you have any screenings performed (CT, PET, etc.)? Last week I noticed a small bump on my rib below my clavicle. Had an ultrasound to check on a fold in my implant and had them check the bump too. Report stated “shadowing bony structure" so now I am freaking out that my cancer either did not respond to the Kadcyla or that it had already spread and was just not in my lymph nodes. I thought the clear lymph nodes would give me peace of mind, but every ache concerns me. Oncologist is ordering CT scan
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Little Cheese... If I am reading your timeline correctly, you received T-DM1 post the clinical trial. The criteria for acceptance into the ATEMPT trial was more about being early stage and confirming the HER 2+ (see below). I think our group went through several years without "peace of mind". As year 5 post treatment approached, this thread became very quiet! T-DM1 has been successful for participants in my group (UNC-CH). Totally understand where you find yourself emotionally... Been there many times myself. Maggie
If a participant agrees to participate in this study she will be asked to undergo some screening tests or procedures to confirm that she is eligible. Many of these tests and procedures are likely to be part of regular cancer care and may be done even if turns out that she does not take part in this research study. If she has had some of these tests or procedures recently, they may or may not have to be repeated. These tests and procedures will include: a medical history, performance status, assessment of your tumor, blood tests, cardiac tests, pregnancy test and a collection of tumor tissue. If these tests show that she is eligible to participate in the research study, she will begin the study treatment. If she does not meet the eligibility criteria, she will not be able to participate in this research study.
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I was diagnosed in March 2020 right when Covid hit, so the Kadcyla regiment was approved to reduce visits to the treatment center. Made it through all 17, with 6 week break for mastectomy. I didn’t have any side effects so kept asking oncologist if it was really working. Treatment was easy compared to the mental stress with every little ache or pain. Inspiring to read this thread. Hoping it is just a bone abnormality that has been there all along that Ijust noticed.
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Hi all!
I have not been on for a long time. 2020 was an awful year with dealing with John's death, a Total Knee Replacement, Covid hitting, my mother with dementia falling a few times and fracturing her hip, developing a large DVT, falling and fracturing her pelvis and wrist, falling twice in rehab because they cannot even use side rails and we were told that “she had the right to fall".. my knee has healed well, my mother is in a small group home where she is getting excellent care, we are all vaccinated, and a difficult school year is over.
I just passed the five year anniversary of my diagnosis and met with oncology. December will be my last time with them and then I'll be released. I'll admit that part of me panicked. My mammogram is this week and I'm slightly nervous. I know that that feeling will never go away. Currently the University Hospital is no longer reading mammograms on site because of a shortage of physicians. So now I will have to wait for my results.
How are all of you doing?
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Had CT on Friday, no bone mets - but found spot on liver. The worries never end. "8 mm low-density lesion with tiny soft tissue nodule in the right hepatic lobe. Consider dedicated liver imaging for further characterization. Trying to stay positive that earlyresults from ATEMPT trial only had 2 distance metastasis in the first 3 years.
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Stay positive... stay positive... stay positive... tdm-1 is amazing.... We are here for you...
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MaggieCat - thanks for the positive thoughts. Talked to MO and he said he was not concerned, but ordered a liver MRI. Scheduled for mid July, but will try to move up once pre-approval from insurance comes through. I probably wouldn't be as worried if I could put on some weight. Through treatment I gradually lost weight and just can't put it back on (before BC I would never have seen that as a problem). Mind just keeps wondering if cancer had already spread at the beginning and Kadcyla had just been keeping it controlled.
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Had MRI this afternoon, have been a nervous wreck this past week. Broke down before the scan started. My radiology tech was amazing -calmed me down, showed me the scans and actually called me once the results were in...fatty spot! So relieved.
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Fatty Spot... great to hear. Know today will be a GOOD day!
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ThanksMaggieCat...today is a GREAT day!
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A well deserved day to celebrate... If you had been here longer... anxiety issues at annuals would have been your shared experience with us! Not at all surprised you needed a "kind" person to assist with your imaging. T-DM1 is an amazing creation. The cost of it has prevented use for early stage in most situations. You have been given something positive from this horrid year, worth a smile or a celebration... and I have every reason to believe you will join us... 5 years from now...putting this in the rear view mirror... Maggie
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MaggieCat...I am grateful my MO was able to get Kadcyla approved by insurance (one blessing of COVID). I am going to try and work on my anxiety over every little ache.
. Glad I found this group. Thank you0 -
LittleCheese, I just read your posts. I want to tell you that I also broke down because of a scan I had to have while still being treated. My platelets were low (TDM1 SE), and I had to see a hematologist, who then detected my spleen was enlarged, and sent me to have an ultrasound. While I was lying there, the ultrasound tech called in the radiologist to look at something, and I thought I would explode from anxiety. She (the rad.) and the tech were discussing something they saw--I thought, well, this is it, they found cancer on an organ, it's over. Then the rad. looked at my face and realized what they had been putting me through--talking over me as if I were not there, in doctor jargon--and said Oh don't worry it's probably nothing blah blah blah. I honestly don't even remember the explanation of what they were looking at it. The hematologist would have to read the results to confirm it wasn't anything to worry about. The rad. left the room, and the tech said my friend who had accompanied me to the hospital could come in. When my friend came in I started sobbing. I was beside myself. The tech was very kind and said we could wait there for the hematologist to read the scan and call me--and he did, and it was nothing. So by that time I was just a puddle on the floor. I had a followup scan (I no longer remember why or when), and this time a different radiologist said whatever they saw before was just an anomaly--there was nothing there.
I'm 8 years out now from diagnosis. Yearly mammo day is a VERY HARD DAY (understatement!)--that's not going to change. But the 364 days in between are good!
It gets better--you think about it less. And I agree with Maggie--you got a gift of getting this drug approved for covid reasons. Wishing you the very best. My mammo is next month, and though I am supposed to then "graduate" from Dana Farber, I told my onc that I want to keep getting my mammos there (even though it's a 3-hr drive for me). She said I could be enrolled in a "survivorship" program to keep being a patient, so I'm hoping that's what happens.
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IsabelArcher thanks for responding! It is so helpful and encouraging to hear from ladies who have been there/done that before. I am truly grateful that I was able to get Kadcyla and praying that in 8 years I can provide the same encouragement and support to other ladies. Good luck with your mammo, will keep you and all the other ATEMPT ladies in my prayers.
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So glad I came here today! I missed you all.
A neighbor has started Taxol, and I couldn't remember what drugs we took, but now it all comes back.
I took the two Moderna shots and am grateful for the freedom I feel. I visited family this year: flew to Maryland in September and North Carolina in May. I took all the precautions: but now that the airports are so crowded, Time to stay home a while.
Hope you all find peace and can proceed with a happy life. I saw my oncologist last month for a Prolia shot, and it was so wonderful to know he cares, for me as a real person. I have lost close to 40 pounds since the start of the trial. Truth be known, I had the pounds to lose and am glad to wear shorts this year. But I'm 70 now, and with my lost pounds, my wrinkles are showing!
Isabel/Archer, TinyDancer, MaggieCat,, MiPat…I will try to touch bases more often. 🐾
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Ozoner... What a treat to read a comment from you. Been a while! I've gone in the opposite direction with weight during the last year. Wasn't comfortable with group yoga... and just wasn't motivated with YouTube yoga. Really can't complain... Life is good.... Maggie
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Hello again, Ozoner! Glad to hear you're doing well and so much thinner (wish I could lose my extra 15!).
I had my annual mammo and appt. at Dana Farber last week. All good. And I have now "graduated"--I no longer need to see my oncologist. I will continue to get mammos at DF (rather than where I live--my choice) as part of their "survivorship" program, and will be seen by an NP. It was a celebratory moment but also weird to bid farewell to Dr. Mayer, who has been wonderful. Of course, I may need her again someday, so we didn't actually say farewell--more of a meaningful mutual look. I turned 60 a few days after that appt.--no complaints from me either, Maggie!
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Hi Ozoner, so happy you are well. Wow, 40 lbs is great! What’s your secret because I can’t get rid of some extra lbs that just won’t come off of me. It could be all of the baking I’ve been doing lately. Hmmmm
Sometimes I can’t remember all of the details from the trial, treatments and dates like I used to. But I guess that is a good thing. There is one thing that I don’t like. I had a port during treatments and had it removed after the last one. Since then every once in a while when I move my right shoulder it feels like the port is still there. I’m told it’s only scar tissue rubbing, but it’s just a weird feeling. I may have mentioned that before, but don’t remember now. I saw my Onc in August and I can finally stop Anastrozole in February. Yay! I’m hoping the joint pain in my hand goes away.
Isabel, I will also bid farewell to my onc after my February visit. He is such a great dr and I will miss him and his caring nurses who take care of me.
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Hello to all,
It has been awhile since I’ve been here. In December I had my last visit with my oncologist. His calm manner was so reassuring. Last week I had my latest mammogram which was negative. I will always be nervous about mammograms.
I find my memory is not as good as it use to be, but the last 5 Years have been stressful and that probably contributes to it. A year ago I had a sharp, tearing like pain in the area my port was. It was felt that some scar tissue tore away. Every once in a while I still have discomfort where the port was.
I hope that everyone is continuing to do well.
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Hello MIPat--sorry to hear about the pain from the port! I hope it won't return. I haven't been on this site in a long time, either.
And I also "graduated" and had my last visit with my onc at Dana Farber last year. I will continue to see a nurse practitioner and get mammos at Dana Farber as part of their survivorship program. I was not willing to go back to getting them locally and would rather drive 3 hrs once a year for the security of having them done where it's familiar to me and the care is the tops. Although it is good to have been clear for 9 years, I take nothing for granted, and every mammo is a freakout. May we all continue to do well--best to all.
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