ATEMPT Clinical Trial - Roll Call
Comments
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Tee2 -- my friend was treated with Taxotere and another chemo drug--can't remember name of it but it's the C in the TC regimen--for stage 2 ER+ BC. She did lose her hair but it grew back as full and beautiful as before. Could I suggest that you write down every question in the world as you think of them this weekend, and then present them to your MO? And I endorse the wish for a boring infusion next time.
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I received the call at 4:00 today that I was accepted into the trial and that I will be in the TDM1 arm. I was worried that I wouldn't find out until I arrived for my infusion so it is a relief to finally know. Tomorrow I will have my port implanted, grab a quick lunch, see the doctor and trial nurse, and at 2pm arrive in the Infusion Suite. It sounds like I won't finish up until 5:30 or later. A very long day.
While I am nervous about tomorrow and the next year, I am also relieved that treatment is starting. It has been four months since the mass was noticed on my mammogram
I would be interested in knowing what types of problems others had the first few days after their infusions. Also, how much water do you all drink and for how many days after your infusion. Any information will be greatly appreciated.
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MIPat - Checked back for my first infusion comments. T-DM1 can cause and did cause constipation. I noted eating raisins and maybe needing prunes in the future. I tried to drink 96 oz fluids daily while getting T-DM1. Best wishes for an easy time tomorrow... Maggie
Here's my entry from 12/2014.....
I'm only a few days out from the first infusion. I have a happy bowel usually and can tell I need to manage that aspect of T-DM1... Please share any advice you were given! I brought home meds for loose stools and the package is unopened! Started eating a handful of raisins yesterday.... may need to buy prunes!
I experienced an infusion reaction ( who knows, but that was the comment back from the research nurse). Kind of a strange mix of chills, flushing face and headache after the first infusion, not at the hospital... about 8 hours later. ( At first I thought it was the Bojangles iced tea I had coming home ( 3 hour drive...) keeping me from getting to sleep.... then,just a really strange mix of stuff going on... Things were normal the next morning.
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MIPat, My notes for the day after #1 (Thursday) says I was tired but didn't sleep very well at night. Metallic taste and felt a little queasy. Saturday thru Monday my hip bones were sore and achy. Tuesday I felt fine. My nose kept running - always kept tissues in my pockets.
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MIPat--so glad you can now begin the job of treatment! I checked an old post on my SEs: My queasiness (but not full-on nausea) from TDM1 started immediately and lasted a couple of days. I also had a runny nose, no big deal. My SEs that developed later (several weeks/months in) were dry mouth, metallic taste, 2 episodes of mouth sores, and low platelet count (which caused bloody nose and some bruising). I felt like myself for the entire treatment--full of energy, went about my daily life as before, except for a couple of days of queasiness and some fatigue after infusion.
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17 and done! So thankful to have this behind me
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Congratulations Wabals! I am hoping to say the same on Friday.
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So many congratulations are in order!! I'm so happy MIPat that you have a plan!! That was the hardest and continues to be the hardest for me... I'm still in limbo here... Just took my steroids at dinner tonight and will take them with breakfast tomorrow. I arrive for my second attempt of the taxol infusion tomorrow at 2:30. They said they will load me up with Benadryl and start the infusion slowly, I pray that pre-medicating works. The next step will be Abraxane if I react to the Taxol. They mentioned desensitization with taxol as an inpatient, but that wasn't ideal for me and my MO agreed. Time will tell...
I'm so happy for all you finishing, wow I can't wait to get to that point... It feels like a lifetime away right now.
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Oh Wabals, that's such an awesome accomplishment, a huge congratulations!! And you too TinyDancer, for Friday!
I'm getting closer, have #14 next Tuesday then just 3 more left!! I can almost see the end in sight.
Tee2, wishing you good luck tomorrow. Let us know.
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Tiny and Serenity you made it too! Just a few more! Such a weight off our shoulders. Everyone said to celebrate but I could not. There is a bit of a let down which my MO said is normal. All of a sudden it hit me what has happened. A year of racing around on adrenaline and I was flying to DC every 3 weeks from Fl. A rat race! Now just a few appts. I get my port out on Aug. 31. Best thing, my prognosis is "excellent"😃.
Tee2 hang in there! The time will go by fast and you will have your normal life back. Wishing you the best
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MiPat I have to say it was not bad at all. Some infusions I felt tired and nauseous for 1 or 2 days. Sometimes I had a funny taste not all the time. I was thirsty for water which was good. I am 72 years old and I pretty much lived my normal life except no tennis because of my port. I enjoyed my wine most days. My appetite was not as good which was great! I compare the feeling of nausea to morning sickness. Without the baby! But compazine worked.
You will do well. Do not be afraid!!! My coordinator said everyone she has worked with at Hopkins on tdm1 sailed through! You will too
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Did you see the research news post today from the moderators --> Women who talk to other people online shortly after being diagnosed with breast cancer may be more satisfied with their treatment decisions.
I know this support group made all difference (positive) in how I handled going through treatment!
Thrilled to see #17 Wabals! and TinyDancer I'll celebrate your #17 in 2 days.....
MIPat & Tee2 - Thinking of you both.
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Thanks Maggie
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Yesterday was a very long day - 11 hours at the hospital. I had my port placement in the morning and it went well. At the beginning of the infusion I had a brief metallic taste in my mouth. The rest of the infusion was uneventful until half way through when I had gastric burning. I do have a history of gastric reflux so it could be coincidental. About 15 minutes before the end of the infusion I started to feel cold and my hands began to shake. I asked for warm blankets and by the end of the infusion felt much better. My first blood pressure post infusion was elevated along with my temperature. I took off all of the blankets and everything was back to normal by the time I was leaving.
Today I am tired and have slept a lot. I did not sleep well last night. The port site was tender and because they had me hold ibuprofen for the past week my right shoulder was so painful from tendonitis that I couldn't get comfortable. I feel better this evening. I don't have much of an appetite, but have no nausea. I took Senekot last night and that was the right decision. I have a mild headache off and on today, but I do get headaches.
Tee2 Ihope that today went better for you.
Congratulations to Wabals and TinyDancer on coming to the end of your treatments. Serenity you are almost there. I've got #1 under my belt and a year seems a long way off. Thank you to everyone who have answered my questions and encouraged me. It makes a big difference
MaggieCat, I am not surprised by what the researchers found. Being able to discuss with others in the same position is empowering. We can advocate for ourselves based on what has worked for others. The encouragement from others keeps us positive and that helps with outcomes.
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Good news to report today! Taxol went much better than last week! Minor reactions, just some back pain and cramping along with the lump in chest that never traveled to the throat and I could breath!! I did the pre-medication with Dexamethasone the night before and morning of and they pre-medicated me with more and added Benadryl. The infusion rate started really slow, then by the end they had set the rate to the normal drip rate. It took about 90 minutes, but it all went in! I will continue this regime for the next few weeks... My MO did mention I might not have to pre-medicate the entire time, one week at a time. So thankful and happy.
MIPat I'm glad things went well, hang in there. It is a long road, but we will get through this and next year this time we will be celebrating like all the girls on this forum!
The research is totally not surprising, I couldn't imagine not having found this forum! I would have been lost. Thank you MaggieCat for starting this thread! And to everyone else brave enough to post their stories and experiences!
Just some nausea this morning, but I slept like a baby. I'll take the prescribe meds today for the nausea and heartburn, which I get now...
1 down, 11 to go!
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Hi MIPat, I would be interested in hearing about your treatments with TDM1. I am a candidate to participate, but haven't made up my mind just yet. I have stage 1, triple positive and have had 2 lumpectomies. Now I need to have a mastectomy. I am having surgery first so I have a little time to decide. I would appreciate any info you can share. Thank you!
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Welcome Lemons! Wondering which treatments you are considering if not the trial....
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Welcome Lemons165! I love your username, always have to have a little humor, if that was what you were going for...
I had the same difficulty with the trial decision, I went back and forth, mainly because I was afraid of being randomized into the TDM1 arm and the unknown outcomes. However, I read every post on this forum and was convinced it was my destiny to be part of this amazing trial and group of females. The biggest reasons were I felt confident in both treatment arms and I really wanted to give future breast cancer patients the option of possibly better and less side effect treatments. One being hair loss, which I continue to struggle with...
I was randomized into the Taxol group, which in the beginning of my decision making process was what I wanted, but then I started hoping for TDM1... But I am very happy and content with what I got.
Good luck with your decision, it is a very difficult one. Look at all the literature and read all the posts in this forum, it will help. It is a great community with tons of support. I amazed everyday and thankful for this group!
I'm sorry to hear about your multiple surgeries. I was lucky to have 1 lumpectomy with clear margins. Once you get past this and then make your decison and start treatment you will feel so much better. At least I did. Good Luck and please keep us posted on your decision.
Wishing you the best!
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Well, lots of good news posted here in the past couple of days. Congrats to those who are done or almost done, and congrats to those who have bravely just begun! Especially glad to hear the second Taxol infusion went better for you, Tee2!
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Welcome Lemons, I had 3 lumpectomies & ended up having a mastectomy anyway, so I know how you feel. You will get through it! I started my surgeries in June of 2015 and got my final implant in May of this year. I think having the multiple surgeries plus ending up with a mastectomy makes the whole experience much different and more difficult, but here I am now done with all that and will be done with TDM1 in October. We are fighters and with the support of this group, we can make it through and put this behind us.
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Tee2 so glad that things went better this time. You were on my mind a lot yesterday. Hopefully you can cut back on some of your premedication a in the future.
I have a little bit more energy today, but not much. My appetite is still not great but I made myself eat lunch and feel better. It is harder to get the water in today. It feels like a lead weight sometimes so I just keep sipping.
Lemons welcome to the group. Everyone here is so supportive and you can ask any question that you want. It took me about 24 hours to make my decision. I'm a nurse and I had a good discussion with my MO about Kadcyla and what the researchers felt its effectiveness compared to the standard treatment. I read more about Kadcyla at home, researched the ATTEMP study, and discussed with my husband. First and foremost what drew me to say yes was the closer monitoring that the trial members would get. That can only be a positive. There was also a chance to be part of something bigger that could help women in the future. While I think that everyone who says yes hopes that they get the TDM1 arm of the trial. there is also a side of you that wonders if it isn't better to get the traditional arm with its know results. You have time to make a very informed decision. Research Kadcyla and the ATTEMPT Trial. Go back and read through the previous posts in this discussion group, and feel free to ask any questions that you may have. Everyone here is a great resource. Also keep in mind that you have to be accepted into the Trial. Not everyone makes it. In eight months there have been three candidates at my facility and I am the first to be accepted into the study. Remember that any decision that you make will be the right one for you
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This forum has been so important to my outlook this past year. When I had my last infusion in May, I felt let down, too. Maybe like Christmas morning!
My breast surgeon just wrote a script for a bra fitting when I went in for my 12 mo. checkup. I had no idea Medicare would pay for four bras! I had a lumpectomy and never considered getting fitted, but the results are so pleasing. They really know how to find the perfect bra.
During treatment, I said yes to every offer of help, got out in the mornings when I was feeling strongest, listened to music, danced when I could, and pampered myself. Oh, and read every week
It has been overwhelming to experience kindness from every quarter: feelings good and bad were right there on the surface--and while everyone was so eager to help in the beginning, it was those who offered their companionship in later months who kept me out of the dumps.
Your time during treatment is hard but precious, and a real occasion for appreciating every gesture. I'll be following all of you as you move along this path...and cheering for you always.
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Woo Hoo! My platelets are 80k (I was worried) and I'm good to go for tomorrow's #17! Last one! YAY!
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TinyDancer! So good to read you can cross that finish line (#17) tomorrow!!!!!!
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TinyDancer woohoo is right. Let me know how you feel tomorrow mentally
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TinyDancer,We will celebrate #17 with you tomorrow
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Thank you. This post board seems like a great place for information & support.
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Ozoner how did you file for the bras. I need to be fitted as my lumpectomy breast is still swollen
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I'm done! YAY! We had a nice celebration with the Nurses and I was given a Certificate of Merit and a stuffed dog. I couldn't have done it without the support from the wonderful Nurses and Doctors at my Cancer Center.
My last Echo is in two weeks and sometime this month I will have my port removed.0 -
To those of you who commented on that down feeling when you finish treatment: My research nurse at Dana Farber told me this is very common. In my case, I think I felt scared to be "on my own"--rather than having all the wonderful medical professionals taking care of me every three weeks. Also the feeling that my "job" of cancer treatment was finished, and now what? However, as I've said on this forum, you adjust and move forward, and it becomes possible to embrace optimism and enjoy every day of your life.
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