ATEMPT Clinical Trial - Roll Call
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Isabel, I am post menopausal so will be on an AI once I finish RT.
Congrats again Cherie!
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I'm 100% ER+. My MO recommended Tamox as optional. Got the rX filled but never started as I saw you could take no more than 1 mo. of Tamox prior to study. I'm such a non-compliant patient sometimes, but I always confirm everything for myself and knew MDACC would be lucky to get me enrolled prior to 30 days, expecially during the holiday season. Turns out it took almost 90 days so score 1 for non-compliant me...haha. Will start Tamox after week 12 of the study.
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TTfan, I was on the cusp of menopause going into my cancer adventure--once I started treatment I never got my period again, but this may have happened anyway. I plan to ask my onc this summer (one-year checkup) what the plan is for me--now that I'm post-menopausal, is Tamox right for me, or an AI? In the meantime Tamox is no problem other than hot flashes (but I'd been having them for years anyway, so it's just a way of life now) and a bit of extra poundage.
Cherie, surprised that your MO said Tamox was optional given you are 100% ER+. I'm glad you'll be taking it after week 12.
Charlie Rose had some cancer experts on the other night to talk about new advances in treatment for a variety of cancers. They mentioned Herceptin as an example of a breakthrough drug that is highly effective. It's music to my ears no matter how many times I hear or read this.
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Tamox is the best choice for me although I am already menopausal, I have a relatively strange condition called pseudohyperparathyroidism. My body doesn't convert much of the vitamin D3 we get through food and suppleents into the active form which is absorbed by our bones. End result is I already have moderate osteoporosis of the spine (fractured T5 and sacrum along with my first ribs on both sides after a fall last spring) along with several compression fractures in my spine that I wasn't aware of until the scans after my big fall. Osteopenic bilateral femoral heads. So, AIs are out for me for now.
With the focus off my BC, next step is to see if study sponsor will allow the Prolia infusions I had planned to begin for the osteo.. Hope to eventually switch over to AIs if/when my osteo improves. Hate to hear that you still have hot flashes with the Tamox. Thought I left all that behind :-)
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All I can say about hot flashes is, I prefer them to PMS. Not to mention cancer. ;-)
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I hear ya, Isabel! Perspective is everything.
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So, any suggestions for what to wear to my first T-DM1 infusion tomorrow? I will be taking it via IV and have horrible veins in my non-cancer arm. And by horrible, I mean the lab tech at MDAnderson had to work 30+ minutes just to find usable veins that would finally provide 5 small tubes. So, I'm wondering about sleeves vs. no sleeves, jackets/ponchos/pashminas to drape over, yoga pants v. jeans in case they have to look for veins in my feet, hats, and don't laugh but gloves (my fingers are always freezing). I am always cold, and they are great about providing heated blankets at MDACC, but I will be there over 12 hours tomorrow and don't know if the blanket route is best in ters of portability.
Also, has anyone had a bad reaction from the first T-DM1 infusion? I am not so happy that I will see my MO @ 2:30 to sign consenets, pre-treat in ambulatory care at 5:30PM (is that even needed with T-DM1?) followed by 90 minute infusion and 90 minute observation. Have any of you been pretreated and if so, with what?
For good news, I do have the" how to survive hospital food choices routine" worked out and that is to bring my own :-). Black eyed pea salad, homemade fruit salad, smoothis makings (along with my little blender), nuts, berries and some 60% cocoa chips thrown in to help with stress :-) Will have to check out microwave facilities available so I can broaden my brown bag fro home.
Thanks in advance for any suggestions!
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First T-DM1.... From my reading of first hand accounts, the reactions vary person to person and are SO completely different as to make me think " go figure".... I think I read you are diabetic. That may play into your response. One of the T-DM1 ladies at my location was diabetic (not sure if 1 or 2) and had challenges with neuropathy. I wrote about my experience with the first infusion on here ( a 12/14 writing... you may be able to find it). My SEs have mainly been histamine related - runny nose ( like a fire hydrant!), dry eyes and watery eyes, also minor tingling in the fingers for a day or two after the infusion ( I ice and take b-6 and L-glutamine supplements) and then joint and muscle aches (off and on) started up with infusion 2. I wear comfortable clothes and take several bottles of fizzy water for the ride to and from...
I originally signed up at MDA Houston for the trial and switched to a closer study location before starting.
If I can answer anything else let me know. For me it was easy and has stayed that way!
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Thanks for the tips, MaggieCat. Will look for your post. I'm a little concerned about the possible neuropathy (type 1 diabetes for 38 years but without any real SEs yet). Will try the B6 and icing. Hope to add L-glutamine as soon as LFTs settle down. I didn't remember that you had originally signed up through MDA. Glad you have a closer location. I'm counting on an easy experience and can't wait for tomorrow to get started. I'd be much more apprehensive without everyone's first hand accounts on this board :-)
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Good luck today, Cherie, but I don't think you'll need it. I dressed comfortably and yes, tried to make sure my arms were easily accessible (so cardigans instead of pullovers). I was advised to drink a lot of water before getting the IV. Also, several nurses over the course of my treatment had me warm up the veins under warm running water before inserting the needle. That really helps. The first day is sort of a hullabaloo, but after that it becomes easy and the process is short. As I've said in earlier posts, I refused pre-treatment with anything other than Benadryl, which is necessary for possible allergic reaction (which did not happen). I drove home later the same day (3 hrs) and experienced queasiness that night and next couple of days. But life went on totally as normal.
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Tomorrow is my first treatment - got snowed out of my first treatment in NC last Thursday - was so frustrated....tried to drink a lot of water today to find veins cuz didn't want a port and sounds like not all TDM-1 people have port.....anyway - nervous, scared, excited....(how bizarre).....anyway - thanks for all posting - it's a nice support.....wondering if my other NC friend will be on my schedule ever....let me know maggiecat....
take care all.....Amy
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Amy - Good luck! Will look for a new post from you about being past Day 1.
I'll be around for radiation treatment beginning the week of March 16. Guess you'll be there either the 23rd or 24th. Let me know your Starbucks order and I will deliver to 3rd floor!
Tell Nyssa hello for me!!!.... Maggie
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Thanks for all of the help everyone. And NCgirl, good luck on your 1st treatment today. We will on the same timeline :-)
My one remaining liver enzyme issue was over the limit allowed for initial dosing based on Friday's labs, but was back in range this morning. Big relief, so I was receiving my infusion by 6PM. Drank 2 liters of water and sstill took 4 tries to start the IV, A little burning, then aching but that might have been from the vein they had to use more than anything else. Looks lke I will go for a port before my next infusion to save us all some grief.
No pre-meds at all, but I did get nausea/vomiting after about 30 minutes. Added IV Zofran and that did the trick quickly. Went through several cycles of sweating followed by chills. Nothing all that major although the chemo nurse suggested I ask my MO to keep my infusions at 90 minutes rather than going to 30.
Felt great back home. Just like normal.
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Forgot to mention one thing. Had to be re-consented as the cardiotoxicity level was increased on the T-DM1 arm of the study. Everyone on study at MDACC will be re-consented. Don't remember if it was due to internal IRB or came from Genentech.
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Cherie, glad you could get the first tx done. I didn't have the sweating/chills reaction but that is definitely a known possible side effect with TDM1 or Herceptin (what they call flu-like symptoms). We do all have variations on the expected and unexpected SEs! Great to hear you felt normal once you were home. Btw, as far as heart toxicity: I had three (or was it four) totally normal echocardiograms in my year of tx.
Amy, good luck! No more snow in NC!
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Isabel, thanks for the info. At MDACC they have only had one patient drop due to cardiac issues I believe. Somewhere the SEs statistically bumped the cardiae issues overall for the study into the next risk stratification, so off with the red tape and paperwork. Not a big deal for me, or probably any of us, with the close monitoring we receive in the study.
NC, hope the weather is cooperating today. Wishing you an easy treatment day!
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Mom... Good to know things went well as can be expected yesterday. Sorry about the nausea, glad they got the zofran going quickly! See what your research nurse thinks ( my assumption is the infusion nurse was someone different) about 90 minute infusions... I preferred the 90 minute infusion time but didn't have much of a basis to ask to stay with it. I do ask for increased fluid flow during the 30 minute observation period so I'm maximizing the flushing/dilution! Maggie
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Thanks, MaggieCat. Yes, infusion nurse is different person from my study nurse, but both of them mentioned that we should run over 90 min next time. I'd prefer that it just stay that way. Smart idea to ask for more fluid during obseervation. I drank 3 liters total yesterday, they ran fluid prior to starting infusion while still waiting on pharm to deliver the drugs but nothing after. Very pleased to have only a couple of very minor bumps in the road.
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Question for you ATEMPT ladies. Some of the medical staff I deal with are more concerned than others with my susceptibility to infection on "chemo". On T-DM1 arm I don't really even consider myself as being on chemo per se. Wonder if they are just spouting the standard chemo dialog or whether I should be taking it to heart. In particular, I showed up with about 8 puppy scratches on my hands and arms from our litter of new puppies. One provider covered me from elbow to hand with bandaids (no joke...I just sat and watched the process) to prevent infection. Other providers think I'm crazy when I mention a side effect like the BigD or being easily annoyed (I actually yelled at a pharmacist yesterday and would never do that normally). Chemo nurse even called it "not real chemo" and I never received any educational material about guidelines while receiving infusions. I'd like it to be "no big deal" but can't decide exactly where we fit in the chemo caution spectrum. Your experiences?
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Mom to 3... T-DM1 is real chemo. I did a google search " kadcyla prescribing information" and was able to find the prescribing leaflet. Hope this link works... not sure since I was viewing a pdf from the site. I'm a bit of a broken record on SEs... seems that individuals have very different experiences with T-DM1. Until you have 4 or 5 infusions under your belt, so to speak, being a bit overly careful isn't such a bad thing! That said, I haven't had anyone bandage my kitty scratches!!! http://hemonc.org/w/images/1/18/Adotrastuzumabemtansine.pdf
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Mom2Three-- you become susceptible to infection only if your white count drops significantly. This is unlikely on TDM1 (as compared to traditional chemo, for which it's a common and dangerous side effect). My white count dropped slightly--barely under the normal range--after several months, but never enough that my oncologist became worried about the risk of infection. TDM1 is not traditional chemo, but it has a chemo element. Has your oncologist explained the way the drug works? It really helped me to understand this. The way my onc explained it is this: TDM1 is a combination of Herceptin with a chemo "piece" attached to it. The Herceptin hunts down the HER2+ cancer cells (if there are any), binds to them, and injects the chemo molecules into them; the chemo molecules then kill the cancer cells dead. What makes TDM1 (and other targeted therapies like it for other cancers) so special is that the chemo molecules act only on the cancer cells and leave the rest of your cells alone. Hence the fewer and milder SEs. It's not "real chemo" in this sense--my onc differentiated between "traditional chemo" and targeted therapy. I'd say you didn't need all those Bandaids on the puppy scratches, but i agree with MaggieCat that being careful isn't a bad thing. As far as mood issues are concerned--I would be surprised if TDM1 was responsible for that.
I'm also going to risk being a broken record--I did have some SEs on TDM1 that were surprising to the team at Dana-Farber, which they described as the chemo piece "breaking through" in my system. I was just more sensitive to it. But TDM1 still wasn't as much of a "big deal"--to use your words--as traditional chemo.
I hope this makes sense and helps!
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Thanks, ladies. MaggieCat & IsabelArcher - I thought I understood the mechanism and beauty of T-DM1 vs. TH but I think the bandaid overkill made me wonder. Wish I would have taken a photo as you all would have laughed :-) I can't blame being such a B lately on it? Too bad...haha. I'll go with lack of sleep as it couldn't just be my natural temperamenet. Thanks for the link, MaggieCat!
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Mom2Three, maybe you should blame your feeling/acting like a B on the cancer itself instead of the treatment! ;-) I mean, as good an attitude as we have, and as optimistic as we might remain, it still does produce a lot of tension and anxiety! I felt lucky to be on the clinical trial, lucky to have the docs and nurses that I had, lucky to be stage 1, etc etc etc, but that doesn't mean I could fight off every bad mood during a year of treatment, you know?
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So true Isabel! I've only been sleeping 4-5 hrs a night so that's not helpful either in terms of my mood :-) this too shall pass.
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Hi!
So my next appt is next Thursday the 26th - I think I'll be on 3rd floor starting at 2:30 pm because I start late that day so not sure you'll stiill be there...but I arrive at 12:30 or so for blood - so if you're there between that time - let's touch base for sure.....I'll email you my cell phone so you can text me.....
Looking forward to next treatment to just feel like we're making progress - main side effects from 1st tx were runny nose and maybe was a little tired - but also got my period the very next day which can make me tired and my 7 year old not sleeping great - did others say they had problems sleeping since on TDM-1? I've been waking up early and sleep has been one thing not affected by this journey until now....anyway - hope you're well...take care,
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NCGirl - my 2nd infusion will be on the 23rd. Will be an all day affair as I'm first up for port placement surgery that morning (horrible veins and I still have bruising from my last infusion after almost 3 weeks). Wimpy veins :-) Will be thinking of you and your 2nd infusion. It does feel good to be making another step forward.
My SEs are the runny nose, sleep issues (which may be totally unrelated) and ongoing nausea. Always have a barf bag with me in the car during rush hour. Drivers are used to seeing all sorts of sights during Houston traffic but I probably do get some strange looks and icky comments...haha.
Wishing you an easy infusion day and few SEs afterward!
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Mom2Three, I'm sorry to hear that your nausea has lingered this long after your first infusion. It may improve as your body adjusts to the TDM1. Have you talked to the doc/nurses about taking Compazine? It didn't totally resolve my queasiness and it did make me very drowsy (don't take it before you drive!), but you may have a good response to it. I hope you're feeling well otherwise.
NC Girl, sounds like you had a good first infusion experience. I didn't have trouble sleeping while on the trial. The runny nose got much better for me after maybe 2 or 3 treatments--at first it was nonstop. I hope you have a very uneventful second infusion.
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Mom2three - have they given you Zofran to try for nausea? I know we are on different agents, but the Zofran worked really well for me and caused no drowsiness at all. I was able to use it while I was at work.
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TTFan, how are you feeling now that you are a few weeks (I think?) out from Taxol?
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Isabel and TTfan - MO prescribed compazine at first but I preferred zofran because of the drowsiness. It also made me wonder why compazine was first choice when it is a schizophrenia med. I had taken zofran before post surgery and it worked well. Took a while but MO finally sent a script for zofran and I've taken it once. Fast relief. She says she might do zofran as a pre med for Monday's infusion. Not sure what the deal is with zofran IV but being a type 1 diabetic my blood glucose gets a little crazy when I can't keep food down. Nasty cycle of nausea and having to eat 😧
TTfan - hope radiation is going well!
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