ATEMPT Clinical Trial - Roll Call
Comments
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Had my second infusion today. It went fine (and much, much faster than the first). I'm definitely a bit tired, but hard to tell it it's from the infusion or from the relative stress of being at a cancer center for much of the day. I've overall felt fine, but the last few days I've had dry mouth, and I've been told that will most likely worsen. I guess I can't complain overall though.
Hope everyone else is doing ok.
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I had my first tdm1 treatment Tuesday. It went well and I feel fine.
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Webals and Laura61, congrats on getting started with treatment! Sounds like you are taking things in stride.
I'm going for my 7th infusion tomorrow, and I have a few recommendations. It's been hard for me to keep hydrated and the dry mouth was a novel experience. So, in addition to drinking liquids I recommend taking your nausea meds if needed, and if constipation starts to set in, take the laxative or stool softener prescribed by your doctor. Weird to think that the most difficult part of chemo could be constipation, but it was for me.
And finally, I seem to feel better in the morning, so that's when I would walk or take a swim class. At low ebb, I would read, which I do for two book clubs. Being with friends makes me the happiest, including reading the posts fromthe contributors to this site.
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Thanks Ozoner! I have already started colace and am drinking lots of water. Trying to walk every day too. Had to give up tennis because of my port which is a bummer but not that important in the grand scheme of things. Just happy to be in the trial
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Atwhat point do you start radiation?
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Maggiecat,
The first 2 tests at the central lab. were negative. Then they did the FISH which was positive. It took a few weeks to get it settled. I found out the day before I started treatment.
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Ozoner,
I have decided not to tell a lot of people, only closer friends. People can be very rude without meaning to be. I guess they just do not know what to say.
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TDM1 Ladies: My first treatment was a week ago and today I have noticed that I have a runny nose. Has anyone else experienced this? Maybe it's just seasonal allergies, or a SE.
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Here is the link to http://www.kadcyla.com/. When you sign up they will send you a free cookbook "Eating Well Through Cancer". This book includes easy, mainstream recipes to combat side effects such as day of chemotherapy, sore mouth, neutropenia, nausea, constipation, and weight-loss with also chapters for caregivers, snacks and healthy eating.
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TinyDancer ... Had to look at my notes. First infusion... "runny nose", then note slight headache and constipation days 5 - 8. Second infusion I began taking benadryl the day of and for a few days after the infusion. Apparently infusion #3 I tried allegra and have it x'd out and arrow indicating I went back to benadryl. I have stayed with benadryl and have needed to increase the number of days I take it between infusions with time. I no longer have a runny nose, now it is all about the watery eyes and puffiness around the eyes.... Maggie
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Thanks MaggieCat! I'm also keeping daily notes of any possible side effects.
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Tiny Dancer, yes, i had runny nose at the beginning of the treatment year. This seemed to resolve though I can't remember how soon--maybe a few weeks. I didn't take anything for it. Because my platelet count started to drop, I also had bloody runny nose, but not like a nosebleed--just drops. I remember talking to my oncologist's fellow--the resident who was assigned to my doctor for training--and he told me that runny nose is a common SE of chemo that is not well understood. I thought that was interesting--such a simple, ordinary thing, yet without an explanation.
Wabals--I told a very select group of friends about my cancer and they all had instructions to keep it to themselves. I didn't want to deal with too many people who, as you say, don't mean to be rude but don't know what to say. One of the benefits of TDM1 is that there is little outward sign that you are getting treated for cancer.
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isabelArcher I did the same thing.
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isabelArcher I did the same thing.
Regarding the runny nose, I love it! I am usually congested from allergies.
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Isabel - I looked up the SE, but it only listed a bloody nose. I guess they need to add a runny nose. It is interesting that there is no explanation for it. I took a Benadryl on Saturday and my nose is much better today. I too only told a few close friends and asked them not to tell anyone else. Everyone does not need to know what is going on.
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Second infusion last Wednesday went well, but I definitely feel a bit worse this time than I did after the first. Nothing that's keeping me from doing anything I need to do, but just a little crappy overall - tired, dry mouth, a little blechy, definitely a bad taste in my mouth.
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Chiming in.... Infusion last Monday and today has been (hopefully) my low point of this cycle! Though history would say I have a few more days of watery eyes and feeling a bit "off". Agree that this isn't keeping me from what I need to do.. just ready for this brief low to move along!
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Sorry you're not feeling well Maggie!
I am already feeling better today. A little tired and yechy. I just love coming up with knew "how I feel" words. Isn't a lot of this hard to describe? Like, sometimes I feel really tired, but it's different from other tired that I've felt. I don't feel like I have to lie down and go to sleep or anything - it just sort of sweeps over me. And, I don't feel achy, just, kind of yechy/blechy. I guess I have to work on those!
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Laura61, somewhere on this thread Ozoner came up with one of those words--I think it was ookie. ;-) I didn't feel quite nauseous but definitely queasy for a couple of days--ookie and yechy combined. I didn't have too much fatigue but when i did, it may just have been from the experience of treatment day in the hospital (I drove home 3 hrs from Boston after treatment). Neither the queasiness nor fatigue lasted too long, and they didn't stop me from my usual activities, for which I was and remain hugely grateful.
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Hi all,
Has anyone else undergone surgery during treatment? I'm about halfway through the trial (T-DM1 arm) and planning to have my reconstruction with silicone implant next month (between treatments 9 and 10). My oncologist has given me the go-ahead but I'm just wondering if anyone has done it and whether the treatment affects recovery. I only had the affected breast removed so the reconstruction is just on the one side, if that makes a difference. Mastectomy recovery was easier than I expected and I know this surgery is supposed to be "easier" but I'm a little concerned about doing it while on treatment--however, I really want to get it done and over with and oncologist says go for it.
This forum was very helpful when I was trying to decide whether to join the trial--so thanks to all of you!
I am at Memorial Sloan Kettering in NY--anyone else?
Thanks in advance!
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Hi NY-
We just wanted to welcome you to our community here at BCO! We hope you find this to be a supportive place!
The Mods
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NY - Likely Dana-Farber has insight on your question. Not reconstruction, though a question of overlap - my RO had concerns about concurrent rads and T-DM1. He received a brief summary of study observations to that point. It helped ease the mind! If you gain any additional info, please post! Maggie
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Thanks. I am going to talk with the research nurse and my oncologist at my next visit, prior to surgery. I'm pretty sure my oncologist already checked in about surgery with the research leaders at DF but I'm going to make sure & discuss my concerns with her.
Thanks to all for being welcoming!
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NYWriter77--YES! I had recon during TDM1 treatment. I started infusions in Sept., and I had the expander-implant exchange surgery in January. (It would have been sooner but I had a problem with low platelet count.) The surgery was outpatient, and recovery was a breeze. The relief of getting the rock-hard expander out was huge--the silicone implant feels so much better. It did not complicate my TDM1 treatments at all. I was getting treatment at Dana Farber but I had my mastectomy and exchange surgery where I live (upstate NY), with excellent surgeons. I'm sure at SK you have the best docs available to you. Good luck! (But you don't need it!)
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Sounds like you have a plan in place NYwriter!
We hope you come back and let us know how you get on with your research nurse and onlcologist.
Sending our best wishes to you!
The Mods
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I had my second infusion today and I am feeling fine.
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Somehow I erased this discussion as a favorite. Glad I figured it out--I missed seeing everyone's posts!
I had my 8th radiation treatment today, so I'm glad they're under way. They're getting faster and I'm able to relax more now. So many kind and loving patients and radiologists! I do miss swimming, but I can't get the marks and tape soaked.
Next chemo is the 18th and I will talk to the MO about options. Main SEs are neuropathy, digestive woes, and a 30 pound weight loss! Looking good except for the non-elastic skin! Am walking our dogs every day but could use some weight training.
Welcome new members! This board has people who've been there and make it so much easier for the rest of us.
Susan
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Susan... Thanks for sharing your name! My weight dropped through early treatment and rads. My low point was the last week of rads. I am now (5 months post rads) back to a "healthy looking" weight. I had digestive woes, too. Know you read about my time with prilosec. I do think it was an important piece of getting things back in order. I'm completely off digestive aids. I do still watch for constipation issues some days after a T-DM1 infusion... have milk of magnesia ready if needed. think I've taken 2 doses in the 12 weeks I've had it in the medicine cabinet.
Tiny.... #2 down!!! Yea....
#14 this coming week... echo again and MO visit to discuss the genetic results from Foundation One tests. Have a bit of "something" I've felt recently in the breast tissue between the outer edge of the lumpectomy incision and the sentinel node incision. Have asked for a couple of additional minutes to get her opinion on "what's this".... I'm guessing lymph fluid without an exit strategy... we'll see..
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I had treatment #2 today and it went well. My MO said I have to wait till I am 12 weeks in to treatment to start rads to make it the same as the other arm of the trial.
ALT slightly elevated but fine for treatment.
Feel good
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