ATEMPT Clinical Trial - Roll Call

TinyDancer5

Well, it finally happened. Today I went to see my MO for #15, but my platelets are 68k this week. The limit is 75k. MO is delaying treatment until next Thursday only if the blood test results on Wednesday are higher. He's not too concerned because I am in the home stretch, but it would be nice to finish all 17 as scheduled.

IsabelArcher

TinyDancer, I hope you make it to #17 too, but you should definitely not worry if you don't. I don't know if anyone has mentioned this to you, but the nurses at Dana Farber literally told me to run up a few flights of stairs before my blood test--evidently this can boost platelet count. Worth a try! My platelets were stubborn but yours may be more cooperative.

TinyDancer5

Thanks Isabel! I'm going to make sure it's higher next week. I guess pulling weeds out of the yard is not really exercise, so I'll have to get walking and run around the block a few times.

Laura61

Ok, I will RUN to Dana Farber next time so my platelets are high enough!

MaggieCat

Tiny .... Isabel's thoughts on a "just in time" approach ( stairs) coupled with pulling weeds --> the "ticket"! Hoping for a full 17 finish for you... while (in the back of my mind) thinking you already have it covered.... Maggie

wabals

Getting ready for # 14. I drink wine and it has helped a lot. LFTs still ok

Ozoner

Hi all! I can't believe it's been a whole month since my final herceptin treatment! Steadily feeling stronger and have an unconscious desire to put all this behind me. Saw a man in the waiting room before an echocardiogram last week, and I almost winced after I saw his arm wrapped after a blood draw.

Going back to the MO Thursday for blood work and a Prolia shot. Part of me misses seeing the people at the clinic. Never thought I would be so nostalgic for this wonderful team! So many rampant emotions this year, but most of them good.

TinyDancer5

It's a no go for #15 for me this week. Today's platelets are 68k... AGAIN! What the heck? I'll try again next week

IsabelArcher

Ozoner--so glad to hear you're feeling stronger every day! I think what I missed at first, after my treatment ended, was the sense that I was being taken care of by the Dana Farber team. Being on your own (between checkups) takes some getting used to.

TinyDancer--bummer, but as a low-platelet veteran, I can tell you that you should not worry about this. Whether or not you get to #17, you've had plenty of TDM1.

TinyDancer5

Isabel, I just want to complete all 17 and put an end to this journey. I'll try again next week.

On a happier note...I met with my Surgeon today after having my one year mammogram and ultrasound and I am "ALL CLEAR"!!! Two beautiful words that mean so much. 😊 I'm so happy

Laura61

Ozoner

Sabel/archer, I agree that being on my own will take some getting used to! I will still have three month checkups, but they're not going to be monitoring me so closely any more. My MO said, "You didn't have a port and were able to take all those Herceptin treatments? That's really something." I always thought I'd be getting a port, but since I didn't have more than two unpleasant sticks, I just silently thanked my mom for giving me easy-to-access veins.

TinyDancer, I know you want to complete all the TDM1 infusions, and so did I. Eventually, after four months, I went to Herceptin. Whatever data they gather during this trial will help many others. There are so many great benefits to TDM1, but maybe they will come up with a shorter course of it because of SEs. I think you're doing great and hope you will be happy which ever way it turns out! Your courage will inspire others whether you take 14 treatments or 17

TinyDancer5

YAY!! I called for my blood test results and my platelets are 81k, so I'm good to go for #15 tomorrow. Finally! I wonder what I did to raise the number? Was it all the fruits and veggies and salmon I've been eating? Was it all the walking and running I've been doing? Or maybe was it the three cocktails I had on Saturday?

MaggieCat

I'm voting for the cocktails! Re-starting the countdown!!!

TinyDancer5

Yes Maggie, I think your right. 😀🍸🍸

IsabelArcher

TinyDancer--Hooray! Gotta be the cocktails. Seriously, though, from what I was given to understand, you have no control over your platelets other than possibly boosting them through vigorous exercise right before the blood test. In your case, as in mine, the TDM1 in your system depresses the platelet count, and the count rises as the drug gradually exits from your system. Usually the 3-week interval is enough time for the drug to "clear," but not for everyone. My platelet count didn't get back to normal for about a year--obviously something pretty weird going on there, since the drug had left my system long before that. It's just a mystery--docs don't have an answer. Anyway, I'm happy for you that you got your wish!

TinyDancer5

Isabel, yeah my MO and nurses all said there is nothing I can do to raise my number, but exercise couldn't hurt, so I made sure my blood was moving. I'm just happy I'm back on schedule again. I was told that low platelets on TDM1 is very common.

Serenitysis

Yay Tiny Dancer, congratulations! I'm going to have a glass of wine to celebrate!!

IsabelArcher

Tiny Dancer, that's interesting that your team has told you low platelets are very common on TDM1. I was one of the only ones on the study in 2013 who was having a low platelet count problem--they were having conference calls about me. My research nurse predicted that as more women enrolled this problem would become more common, and apparently she was right.

TinyDancer5

Serenitysis, have a glass for me.

Isabel, my next blood test is on the 7/13 and if all goes well then #16 will be on 7/14. I hope these 3 weeks is enough for it to clear and not have to be delayed again. I wIll continue walkng and running just in case that did anything.

Reikion

Congrats TinyDancer5!

I've had 2 infusions so far - 3rd scheduled for this Friday. The first time I was given benadryl and hydrocortisone, the second time I was given dexamthasone (another steroid) as a premed. Developed folliculitis as a side effect from the dexamethasone. Was prescribed an antibiotic creme that has reduced the pain and itching.

One week after each infusion, I developed a rash on my arm along the infusion vein. The first time I thought it was aggravated by foods I might have eaten and after stopping those foods, the rash went away. This time, the rash worsened and only 2 days ago after trying the antibiotic creme has it gone down -- I guess the rash was folliculitis too. I need to make sure they do not give me dexamethasone next time.

Am not keen on getting a port and am concerned they might insist I get one.

IsabelArcher

Reikion, I'm sorry to hear you're having a problem with rashes. Like you, I did not want a port, and I hope this problem can be resolved. But if you do need to have one, many women say it does make the whole process easier. Good luck this Friday!

TinyDancer5

Reikion, you are on T-DM1 and they gave you benadryl and hydrocortisone with your first treatment? I have a port and I think it does make the whole process easier. I didn't want one either but my doctors and nurses said it is easier than trying to find my veins. Good luck to you with #3!

Reikion

Thanks Isabel!

TinyDancer5 - Yes, I'm on TDM1 - but I had chills during my first treatment and they had to stop and administer Benadryl. Hence the premeds each time.

Will update tomorrow.

Serenitysis

I had #12 this week. I can count the remaining treatments on one hand!! This really gives me a mental boost - Only about 3 months left!

TinyDancer5

Congrats Serenitysis! Isn't it great to be so close to the finish line?

Reikion

Congrats Serenitysis!!!

I had #3 on Friday. They went back to benadryl and hydrocortisone this time and I did fine. No reactions. Hoping the week will be okay. Had some nausea last night but manageable. Am going to avoid all foods that I could possibly be allergic to and hoping no rash this time. The old rash is all gone - am glad I was able to get off the dexamethasone.

Have a great 4th of July!!!

Laura61

Ok everyone. ONE MORE TO GO! I'm soooo excited to be done. Thursday is it and then I guess that's my official good-bye to this year!

MaggieCat

Laura61...... yeah!

Reikion

Congrats Laura61!!!