ATEMPT Clinical Trial - Roll Call
Comments
-
Mom.... So good to hear you have a Zofran script!!!! My "nurse manager", provided as support by our corporation, wanted me to move through the required compazine script immediately to Zofran if I had nausea. She provides support to chemo patients that are employees or retirees, and explained the first compazine then zofran deal way back in November...can't really remember the why!
I'm back home after my first week away for rads. Yeah!!!!
0 -
MaggieCat - Nice to have a nurse manager on board too. I'm happy to have my little bottle of zofran standing by just in case.
And great news that you've completed your first week of rads! You are moving through the timeline and it has to feel good to be checking off another box there. When do you have more rads?
Hope everyone is enjoying a wonderful weekend!
0 -
Mom2Three, glad to hear you now have the Zofran. I think they prescribe Compazine first because it doesn't have downsides (except of course for the drowsiness), and I guess it's entirely safe even if you take a lot of it. I never took Zofran but I understand constipation is a common SE. If my queasiness had been worse or lasted longer, though, I definitely would have taken it. How about ginger tea with lemon? I got some relief from that, and it won't mess with your blood sugar.
0 -
Lovely day here on the SE NC coast! We have a pair of osprey that have just returned this week. The female arrived just before I headed out for week 1 of rads. The male arrived while I was away this week. The nest tree is at the corner of our house with the nest about 50ft or so just above our bedroom skylights! 4 more weeks of weekly life away from home for rads....
I am trying something new --> acupuncture. Five sessions are available through a cancer support group located in Chapel Hill. I think my finger tingling/numbness is much improved after just one session!!!
0 -
Isabel - thanks for the reminder about the ginger tea and lemon. Will add that to my bag of tricks here and take some with me to my infusion on Monday. Don't know how I forgot as I give the dogs ginger snaps for long car rides to ward off carsickness.
0 -
MaggieCat - so special to be able to watch the osprey nesting. Hope the next 4 weeks fly by for you!
I also do acupuncture through the Integrated Medicine Dept at MDACC. Love it and it has been helpful with pain as well as stress in general. I usually fall asleep during my sessions...haha. Had never tried it before, but am happy I did. Hope it continues to help with the tingly/numb fingers.
0 -
Love the osprey photo! Here in the Northeast spring feels a long way off--still cold with leftover snow--but we did have a migrating swan stop by our bend of the river. Wishing you smooth sailing with the rads
0 -
Hi all -
Not sure why they didn't offer you Zofran up front, but possibly because it costs at least 10x what Compazine does so they might have wanted you to try that first. It does work for lots of people but has a worse side effect profile in some people. My onc nurse said, if Compazine works for you once, it likely always will, if it doesn't, don't keep trying because it won't likely ever work for you.
Tomorrow will be 4 weeks since my last Taxol and my energy levels are vastly improved. My taste is close to normal again - what a joy to once again have red wine taste right! I celebrated taste return olive oil and wine tasting with a friend in Sonoma last weekend! I still have finger neuropathy, maybe a little better but maybe wishful thinking too. It doesn't hurt, just makes me clumsy manipulating small things. Really praying that will improve, as it would badly affect my work. I had my first actual RT today (as opposed to setup stuff), fast and easy other than some shoulder pain from the positioning. I guess I quit doing the post-operative stretches a little too soon. Back to work on that! Otherwise my main issues are annoying chronic runny nose and eyes, hot flashes and insomnia. Ativan helps with sleep but I worry about taking it too often as I hear it can be addictive and don't know that my MO will refill it now that Taxol is over. Anyone else with sleep issues or solutions? Melatonin or Ambien help me get to sleep, but do nothing for that annoying 3AM wakeup that I rarely fall back asleep from.
Overall I feel a million times better and am so relieved to have the true chemo portion of this road behind me! My first two Herceptin only infusions were a piece of cake, even over 30 minutes - no flu symptoms or anything else I could detect besides the runny eyes/nose. Even that is helped with Allegra. I have some wild hair coming in - think Einstein with a really bad 3/4" buzz cut :-(. But it's hair, so no complaining. Just this last week my brows and eyelashes mostly fell out - just when I thought I had escaped that! Small potatoes next to cancer, but it is weird as I now look more like a cancer patient than I did when I felt worse.
Sorry for all the Taxol related reports, I know none of you are experiencing that, but I figure there are or will be lurkers on this thread wondering how it would be to be randomized to that arm!I hope all of you are are tolerating treatment well! I always look forward to your updates!
0 -
TTfan - So happy that your energy is improving. The return of your normal sense of taste is definitely reason to celebrate in Sonoma! I'm sure you are rocking the Einstein look. Hope you sail through rads and Herceptin. Hope the neuropathy resolves soon. Do you think a session or two with a PT Hand specialist might help? I know the neuropathy is due to nerve damage, but when I was recovering from a tendon release surgery in my hand I saw a hand PT for a few weeks. She provided lots of exercises to improve my small motor skills along with the stretching to maintain range of motion and strengthening excerises.
I can sympathize with most of your H related SEs. I also have no problem failling asleep, but routinely wake up between 1AM-3AM and am up for an hour or so until I can finally fall asleep again. I also have the runny nose and now live with kleenex in my purse or pocket just because I never know when that spigot will be opened and suddenly I'll be dripping...ick. My eyes are "itchy" in an allergic way, but so far no real tearing there.
Thanks for the compazine v. zofran info. I received zofran pre-treatment with yesterday's infusion and did not have the nausea/vomiting issue that I had with the first infusion. I do have scipts for both so I might try the compazine to compare.
0 -
TTFan, so glad to hear you're feeling better and I hope all the leftover SEs resolve quickly, esp. the neuropathy. About waking up and not falling back asleep--I never had this problem before, but I have it now. I just think it's middle-aged worries (including cancer!). It's also, in my case, hot flashes during the night--I wake up hot, throw off the covers, and if I fall back asleep, wake up cold, pull the covers back on, ad infinitum.
I had a mild version of loss of taste while on TDM1. I will raise my glass of pinot noir to you tonight!
My hot flashes are from Tamoxifen--TTfan, are you on it? I see from your profile that you are triple positive like me. (Sorry if I've forgotten a previous conversation about this--I'm too lazy to go back over the whole thread. ;-)
I was on Herceptin only for 5 months and like you, had zero SEs.
My friend who went through TC (taxotere/cytoxan) chemo also lost her eyebrows at the very end, long after her hair had fallen out, but they also grew back quickly. She had painful neuropathy that did clear up over a few months.
Mom2Three, so glad that your second infusion was uneventful!
0 -
NCGirl68 - how was your 2nd infusion? Know we are just a few days apart on scheduling. Hope it went well with few SEs.
MaggieCat and TTfan - been thinking about you both as you progress through radiation. Any fatigue yet?
Has anyone had issues with tachycardia? I was shopping this weekend and several times had to sit down as I was breathless and my heart was beating so hard. Finally checked my heart rate and it varied from 120-156. Normal for me is 80-90. Happened throughout the day on Saturday but has calmed down today. Strange.
0 -
Mom... I had an episode around infusion 3... this was when my liver enzymes went up.. just not a good point for me. My nurse manager asked that I keep a watch on blood pressure ( concern is heart rate goes up and blood pressure goes down) and also to do a morning weight ( after peeing, before anything else), concern being rapid weight gain. I was to report any gain of 1 1/2 lbs in 24 hours along with any additional episodes of rapid heart rate/lower bp/out of breath.... I haven't had any additional episodes but am mindful of what is happening... Maggie
0 -
Thanks, Maggie! What you shared here helped me understand why I may be having more pre-syncopal events. My BP is normally 90/60ish so it may be dropping fairly low when my HR goes up. Good idea about the morning weight. Will have to dig out the scales :-) Don't see my MO until 4/13 so I will send her an e-mail letting her know of the situation.
Cherie
0 -
Have any of you been watching the documentary about cancer on PBS? Last night it discussed two major breakthroughs in cancer treatment of recent years--a curative drug for a particular form of leukemia, and Herceptin. My husband and I were riveted--incredible story of a doctor's research, the pharmaceutical company's development of the drug, and the women who enrolled in the first clinical trials. I had no idea that women with HER2+ cancer (and others) actually staged a protest, banging on the doors of Genentech, insisting that the company hurry up and allow wider testing of the drug on humans. We are all in their debt. And now, onward with the TDM1 trial, which of course would not have been possible without the Herceptin trials and the evidence of its amazing efficacy.
0 -
Hi all. I am waiting to hear if I will be accepted in the ATEMPT trial. Had a lumpectomy on March 9 and IORT (internal radiation at the time of surgery). Since I have grade 3, the oncology radiologist wants to follow up with five weeks of external radiation, which was the slightly dismaying information I received today. I am totally new to all this but hope I can take the Kadcyla in the trial. Mainly I'm grateful for advances in HER2+ treatment, as mentioned by Isabel/Archer. Mostly keeping positive except for a few bumps in the road.
0 -
Hi Maggie Cat. I'm a birdwatcher too, and have seen several ospreys here in middle Tennessee (I had no idea what it was when one perched in a dead tree on our block). This weekend in Maryland (visiting my mom in a nursing home) I saw red-necked grebes, a common loon, and two swans. Birdwatching is one hobby I hope to continue forever. May have to back off on Zumba Gold (for senior citizens) when I start getting infusions.
0 -
Greetings Ozoner.. A couple of random comments... Zumba Gold --> don't put away your tights! External rads --> I wanted internal and was convinced to do external with breath-hold, so I'm not surprised with the RO's recommendation, sounds like the RO is a keeper! Keep us in the loop... Maggie
0 -
Hi Maggie! I'm so glad I found this forum—your posting is comforting, to say the least. Just looked up external with breath-hold. You really eased my mind, and I will try to keep going with the Zumba, even if I need to sit out a dance or two.
My dx (below) says "mets," but I don't know why. The diagnoses seem similar to everyone's, but mine has "mets."
I hope to hear soon about the ATEMPT trial.
0 -
Hello, Ozoner! Bumps in the road are to be expected--it takes a while to accept the change that takes places in your life after diagnosis. I'm almost two years down the road from diagnosis, and I think less about stupid cancer every day. These days it's more like, "Oh, I haven't thought about cancer today." ;-) But those early days are tough. Let us know if you get on the ATEMPT trial and if so which arm of the trial you get assigned to.
On the subject of bird-watching: I live in the Northeast, and our bleak winter was brightened by a ring-necked pheasant who visited our yard every day for a couple of weeks. One day he appeared on our back deck--incredible sight!
0 -
Guess we need to re-name this thread...atempt and birders!!! Finally was home to observe both Ospreys. Cold front came through and the nest osprey headed out and up to greet the other.... Today has been loud with the two catching up!!!
0 -
Hi and welcome Ozoner. I am in the taxol arm of Atempt, now over a month past the Taxol portion and just over halfway through ext radiation with breath hold. I will have my third Herceptin only infusion Tuesday, which will continue through November. Whichever arm you get is very "do-able" and we are all here to support you.
I am not a birder, but sure enjoy the ruby throated hummingbird that now visits our garden most days. It loves our red flowered pineapple sage!
Isabel, I also found the PBS special fascinating and didn't know about the Herceptin protests. I wanted to reach through the screen and hug them all in thanks!
0 -
Maggie, what a fantastic photo.
TTfan, yes, I wanted to hug those protesters (shown in the PBS cancer special) too! I googled Dennis Slamon, the doctor who "discovered" Herceptin and first tested it, and it turns out he was the subject of a cable TV movie a few years ago. I have put it on the Netflix queue.
0 -
Thanks to all of you! It's great to get support here, especially since we don't have to explain things or put on a happy face. I have found the HBO Vice show about cancer and will watch that, and glad to know about the movie. Can't find the PBS one yet, but I did see 60 minutes. TTfan, sound like you are well on your way to becoming a bird lover!
0 -
I got a message from the research nurse, and apparently all my tests have come back from those conducting the trial. Labs are set for Wednesday, and she said they hope to get started. I'm relieved; excited; a little anxious. I do want to move forward, though, and put treatment in motion.
0 -
Ozoner, did the nurse tell you which arm of the trial you were assigned to? Or not till the day you start? Either way, yes, it's good to get started--the way I approached this was as a job. You've got to get the job done. In that sense, it does feel "good" (!) to get to work!
0 -
Ozoner... A big hurdle jumped and behind you!!!! Best wishes for a speedy start!!! Maggie
0 -
Congratulations Ozoner! It's certainly very normal to feel nervous, but I'm sure it will be a relief to get started. BTW you may want to remove the word mets from your tagline. Fortunately you clearly don't have mets if you were accepted into the trial.
Maggie- are you done with radiation yet? Today was my last day, I'm so excited to have surgery, the Taxol and radiation behind me now! No medical appointments for the next two weeks seems like a miracle!
0 -
TTfan
Isn't it a nice change to have 3 weeks at a time without appointments!!! I will watch for your thoughts on Herceptin only treatments...
Have 2 more rad treats and will head to the coast tomorrow after the last one. Yeah!!!!
My thoughts on the overlap of rads and T-DM1....... Before starting there was correspondence between Dana-Farber and my RO team wrt overlapped rads with chemo (T-DM1). The data Dana-Farber provided met the threshold of "OK to proceed". I'm two weeks past the overlap and have to say I got knocked hard.... So, if you are reading this and WILL have an OVERLAP of T-DM1 with RADS, be prepped for digestive issues... Both treatments can cause acid stomach. Your results may be different ( I hope so!), but an ounce of prevention may ensure your results are different!!! Probiotics, Tums type chewables, non-acidic fruits. So, I'm 14 days later and the mouth ulcers have healed, digestion along with bowel function are back relatively happy again. Next infusion is in 7 days.. so no overlap but does occur 6 days after finishing rads, so we'll see how it goes.
Almost Homeward Bound .... Maggie
0 -
Congrats to TTFan on being done! Hooray!
MaggieCat-- I'm sorry to hear about all the stuff you've been dealing with. I also had mouth sores on TDM1--not pleasant, though the mouthwash and oral lidocaine were very helpful. 2 more rads to go is good news...the finish line is in sight.
One of my freakish (and totally non-irritating) SEs from TDM1 was ridged, bumpy thumbnails--no other nails, just thumbnails. So I've been done with TDM1 for an entire YEAR and I have yet another ridge (well actually a groove, around which are ridges) growing in. I see my onc again in July--I am looking forward to showing her this oddity!
0 -
Hi TTfan. I don't know how to remove mets from the tag line. Any ideas? I've tried manipulating the info, but nothing has achieved the desired result.
I'm reading the part of overlapping treatment w interest. There is talk of overlapping rads and TDM1 if I get the TDM1 arm of treatment. Or if I get the TH arm, they will start rads after finishing the Taxol.
And MaggieCat, you have had to go through a lot more effort since you must travel so far for your treatments. It reminds me to be grateful for having the blessing of proximity.
0
