ATEMPT Clinical Trial - Roll Call
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Serenitysis, my nails are very bendy, thin and split easily too! They used to be strong.I keep them short and take Biotin but I'm not seeing any difference. I also use clear nail strengthening polish.
Congrats and good luck with #8. My #12 is on Thursday. We are getting closer to the end
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Serenitysis, I have the same problem with my nails too. Thin, bendy and splitting. I keep them short, take Biotin and use a clear strengthener nail polish. They used to be strong but not anymore.
Congrats on your #8. My #12 is on Thursday. We are getting closer to the end.
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If anyone is interested, I found a free app where you can learn about all the ingredients in the products you use every day. I wanted to find clean a facial cleanser and moisturizers without chemicals. I searched and found Acure brand - clean without toxic chemicals sold at Target, Whole Foods or Acure.com.
The Think Dirty app allows users to scan a product's barcode and get not only a list of the ingredients, but also see how they stack up in terms of their potential toxicity to the human body. The app gives products a score on the "Dirty Meter," based on the inclusion of certain carcinogens or allergens, and offers alternative options for cleaner products.
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Wow, what if Think Dirty could analyze the meds we've been on this year
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Ozoner, Lol! When I started reading Tiny Dancer's post, I thought the sentence would say: "If anyone is interested, I found a free app where you can learn about all the ingredients in the" drug(s) we're on!
I'm in the process of scraping a weird residue off a wood floor after pulling up old carpeting from the previous owners of my house. It requires a solvent. When using products like this I always think, "I hope this doesn't give me cancer." And then my next thought is, "Oh right, I already have it." ;-)
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TinyDancer, thanks! Last night I filed what was left of my nails very short. I went out today & bought some clear nail-strengthening polish and so I'll see if that helps. I want to ask my oncologist tomorrow about Biotin before I take it. Several others said they started it after chemo.
Good luck with #12! I kind of dread chemo weeks now. I have 3-4 days of severe fatigue afterwards. But I know it could be worse...
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Wow... several messages for new postings!.... We have been quiet lately..... I got a thumbs up on biotin from the MO and my Derm. Dr. (her mother had Her2+ BC).
I found the last infusions harder than earlier ones ( the dread factor was there). The idea of "chemo-lite" sort of went to "fiction" for 13 - 17. But, had my hair.. now nails are better...research is showing that T-DM1 also creates an immune response. Still believing we will be the "data" that makes a difference!
We are survivors.........
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Serenitysis, I wish I had 3-4 days of fatigue afterwards, then I'd be sleeping like I did during radiation treatments. Usually I feel chilly and blah on the day of treatment, then it goes away. I asked my MO about Melatonin to help me sleep and he said it is ok to take 3 mg one hour before bedtime.
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Hi everyone,
I am considering joining the ATEMPT trial and am glad to have found this group. Am ER-/PR-, HER2+. I was offered TCH or Taxol + Herceptin, but at a second opinion at UCSF last week have been offered the ATEMPT trial. I was initially diagnosed with DCIS but am now classified as Stage 1b (0.9 cm).Will post back in a day or two.
Thanks
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Reikion... Welcome! If you take a few minutes to scan through our posts you'll find most of us are very glad we made the choice for the trial. Consider sending a personal message to TTfan. She was treated at UCSF and is always available for a chat.... just need to get her attention!
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TinyDancer, I would not wish this fatigue on anyone. I am so exhausted for several days after treatment I can't do a thing except lie on the couch or sleep. Sometimes I'm too tired to read or even watch TV. Can't work. It's challenging.
Welcome, Reikion! I did a lot of research into the trial before signing on. I ended up thinking that I'd have a chance of either TH or TDM1, both of which I felt were good treatments. I'm glad I'm on the trial and on TDM1. It seems that this type of targeted therapy is the way of the future. My diagnosis was also originally DCIS, but after a second lumpectomy they found IDC (and eventually a third and then a mastectomy). At least they finally got it all. Only the DCIS showed up on a mammogram. The invasive tumors did not.
Best of luck in your decision-making! I hope you speak to a great oncologist who can really explain the options to you and answer all your questions.
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Reikion - I did get treated at UCSF and am happy to talk with you. PM me with contact info if you'd like to. While I think it's a great trial, there are certainly both pros and cons to participating. I'm traveling and intermittently out of cell/email range til early next week, but will happily respond then.
I blamed my nail issues on Taxol but they are still brittle and crack easily more than a year out from my last Taxol and 4 months from my last Herceptin. Not sure why they are still so icky but I'm hoping that as new, unexposed to drugs, nail grows in they will improve.
Isabel, I'm have having the same weight issues on the estrogen blocking drugs. I've always been thin so it's hard to adjust to that roll around the middle! I just hope it levels out at some point. An extra 15 pounds is ok, but at the rate it's coming on I'll be double my size in another year or two 😒. I'm also having fierce hot flashes but they are more tolerable on Gabapentin. Glad to hear yours got better with time!
Maggie, did you see new info on Herceptin immune effects?
Be well everyone!
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Reikion-- Good luck with your decision! Based on my invaluable second (Dana Farber) and third (SLoan Kettering) opinions, TCH was definitely NOT the way to go. Either Taxol/Herceptin, or TDM1 via the ATEMPT trial (if you're selected for that arm of the trial). I'm glad you're at a great hospital/cancer center now. BTW I have similar story to you and SerenitySis--DCIS initial dx, then IDC tumors found through surgery.
TTfan--ugh, these 15 pounds are sticking to me like nobody's business. The only bright side is that I have learned how not to gain MORE weight--I'd be heading for obesity otherwise. Only thing that works for me as a maintenance diet is very low-carb diet (with a cheat day on the weekend). Isn't it weird how this happens to SO MANY women but studies show that estrogen blockers are not the culprit? I still have my doubts.
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Is this the herceptin immune response finding you are referring to, TTfan???
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Thanks for the welcome MaggieCat! I will get in touch with TTfan. I have decided I want to join the trial.
Serenitysis and IsabelArcher, I felt a lump and went in for my first ever mammogram in December. Had a lumpectomy with bilateral reduction. They took out about 13 cms of DCIS - but fortunately the invasive component was only in the lump, but it was multifocal. Surgery in February went well - clear margins and am recovering nicely.
I had decided that if I have to do the Chemo I would go with the Taxol + Herceptin. At 2nd opinion, another doctor strongly felt I should do TCH. Was told Taxol was not an option at that hospital.
At UCSF, was told, they would not recommend TCH for me. Taxol + Herceptin was offered and the trial.
TTfan, I will PM you my contact info. I am also a Kaiser patient and my oncologist there has just informed me she will not refer me to the trial. I need to find another oncologist that can do that. Any recommendations you have will be highly appreciated.
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You crack me upt
Hey MaggieCat! I was responding to Isabel/archer's quip about the solvents she uses on her floor (posted April 4). Guess the reply didn't get linked to her post.
Here is a picture of me w my breast surgeon on Tuesday after I had
3-d mammograms showing NO CANCER! Yesterday was bittersweet. Seems impossible that a year has passed since my lumpectomy! Now I will be going to a nurse practitioner who specializes in women's health, and barring problems, won't be seeing my wonderful surgeon again. 0 -
Ozoner... wondering about your comment?????
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I received a packet on the trial at my first MO appointment today - I don't have to decide for probably 4-5 weeks since I am having surgery first. Stage 1 now but that can change and this could be a moot point. Those of you that did the TDM1, can you share your experience relative to side effects - neuropathy - hand and feet, and hair loss. I'm trying to do my own due diligence since the packet seems to list the same symptoms for both arms of the trial. Thanks so much.
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NattyB - Read through the thread for real time issues with side effects (blow by blow as things were happening). Honestly SEs were/are varied depending on which arm of the trial and by individual. I was in the T-DM1 group. No hair loss. Dealt with mild neuropathy for a few days after most infusions and found B-12 shots helpful. Good luck with your upcoming surgery! Maggie
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Thanks so much MaggieCat - seems too good to be true about the hair...
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Yes, it does seem to be too good to be true to have hair going through treatment. The positive side is being able to blend in, nothing indicating "chemo". The downside is not always feeling great while looking ok! "But you look so good"....
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Maggie Cat - that true... there is not even hair thinning?
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No thinning.... My hair wasn't affected.
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Welcome, NattyB!! I remember so well being where you are now! I found it quite a tough decision. This group helped me a lot. You also have to keep in mind that you may be in the 25% who get the taxol/Herceptin arm. I'm on the TDM1 arm of the trial - heading toward my "hump day" treatment on 4/26, #9 out of 17. After that it's counting down!
One of the "selling points" of the trial is you don't lose your hair. Mine hasn't changed a bit. My side effects have been: fairly severe fatigue the week after treatment (that started after #4), that's the worst thing, some nausea & loss of appetite, bloody nose, brittle fingernails, and mild neuropathy (tingling) in my fingers. The fatigue has worsened the further into treatment I get. I'm hoping for a plateau.
I call it stealth cancer with this treatment. No one can tell you have cancer or are in treatment.Best of luck with your decision.
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Thanks so much Serenitysis. I hope that after surgery I still have the choice:). The literature I got didn't lead me to believe that the TH arm was still possible but I also still haven't dissected it - kind of fixated on the surgery and getting on the other side of that. It's really a tough decision. I really appreciate all of the feedback on this thread!
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NattyB, are you having a lumpectomy or a mastectomy? Best of luck either way. You'll make it through.
In the ATEMPT trial, the assignment is randomized by computer, 75% TDM1, 25% TH as the control group. It's not a blind trial however, obviously.
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Gotcha - I'm opting for a BMX so I have about 4 weeks post op to mull it all over. Thanks so much for the reply and support. I guess it's way too early to say I am over this. lol
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Hi NattyB-- as the other ladies have said, TDM1 causes NO hair loss or thinning. My SEs included fatigue for a couple of days after the infusion plus queasiness (but not full-on nausea and no vomiting, very manageable), dry mouth, a few other annoyances, and low platelet count. As I always say, TDM1 did not interfere with my normal daily life--and no one that I hadn't specifically told I was in treatment for cancer knew that I was. Could I ask you why you've decided on BMX, and have you gotten a second opinion on this? At Dana Farber, the cancer center where I received TDM1, if the other breast is cancer-free based on testing, they are strongly against BMX. Every woman's case is different, and you have to do what's best for you, but the best advice I feel I can offer anyone going through this is to get a second opinion (I got three) and, if possible, see someone at a cancer center or a research hospital known for oncology. I wish you the best of luck moving forward. You're at the hardest part of all this--the shock, fear, adjusting to new realities. But we are all proof that life goes on after diagnosis! And it gets better every single day.
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Hi Isabel - thanks so much for sharing your experience with TDM1. It really is stealth chemo in that there is no hair loss. I'm getting my treatment at a major academic medical facility that has a breast cancer center. The decision to do a BMX was really mine - couple of different factors in my decision... First, I have very dense breast tissue and have had issues with clear mammograms in the past and the stress between mammogram, ultrasound and biopsy was just too difficult for me personally, professionally etc. that I'm just not interested in keeping them around. I did get several opinions both inside and outside the facility (I also happen to work there). My team did a great job of explaining all of my options but ultimately they did leave it up to me. It's so great to see how well you all have done on this therapy - amazing.
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Hi all. Lucky #13 = DONE! 4 more to go. I'm so, so ready to be done!
NattyB: good luck with your decision. My side effects: fatigue for 3-5 days after (usually stay in bed day 1 and 2 and then days 3-5 are varied, but usually I can go about my normal day including taking care of little kiddos, though I'm tired at the end), bloody nose, some malaise/flu-like symptoms, but less if I really focus on resting the first couple of days. Like others said, you really can "pass" with this treatment - people don't know what you're going through unless you tell them. The other thing I'll say is that I've caught a cold a few times and that has been bad- my body just can't seem to fight it off and I stay sick too long. No neuropathy for me.
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