ATEMPT Clinical Trial - Roll Call
Comments
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Laura, congratulations!! So jealous! I'm looking at 8 more and it seems like forever. Missed you at the SoulMates gala. For any other women being treated at Dana-Farber, I highly recommend this BCmentoring program!
Anyone have problems with low sodium level? It started after treatment #4 and they insist it's not a SE, but I've never had this before, so I wonder...it is contributing to my fatigue.
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SerenitySis-- Hang in there, you will get to the finish line and then you should do something great for yourself. I didn't have low sodium and haven't heard of that related to TDM1.
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I know, thanks, it just seems so long while you're in it. I have my final implant surgery on 5/26. Yay! I'll be (hopefully) done with that at least and be more comfortable.
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I just continue to have fluctuating platelet counts. It was 83k for #13, my lowest number yet. 😕
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TinyDancer--when I was on the trial the low platelet count issue was still rare. The docs were having conference calls about me. Now that so many more women have signed on, I think this problem is cropping up more often. My research nurse predicted that this would be the case. It's great for you that your lowest number is happening so late, after #13--my problem happened earlier.
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Had # 13 today. 4 more to go! Cannot believe it is almost done
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Isabel, I hope I can make it to 17 with no worries
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Hi all,
I'm still waiting to enroll in the trial -- have had delays with Kaiser being my primary insurance and UCSF not contacting secondary insurance (United) until now. My surgery was in February - so only have another week before my eligibility expires (90 days). Initial delay was with wrong samples sent to central lab --- they sent the biopsy sample instead of the sample from surgery.
Had Echo and EKG yesterday and all tests were normal. Just found out about insurance issue today.
Am starting to get anxious now. Am scheduled for first treatment next Friday ---- hoping things will get sorted out.
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Reikion, sorry you're having to deal with this added stress which you definitely don't need as you're anticipating the start of treatment. Good luck and keep us posted! Hope you get in.
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Thanks Serenitysis! Will post once I know more....
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#14 was today and my platelets went up to 91k this time. YAY! 3 more to the finish line
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Hi all,
Update: I've been assigned TDM1. Just found out this afternoon. Covered by secondary insurance.
First infusion scheduled for tomorrow. Will let you know how it goes.
Thanks!
Congrats Tinydancer5!
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Hello Reikion. Congratulations on being assigned TDM! It is definitely do-able and a respected treatment for Her2+ cancer. My oncologist was so happy when I was selected for the Kadcyla (TDM1)! Both arms of the trial offer excellent treatment, and I was happy to contribute to the project and know that the outcomes will open doors for women to have more choices.
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Reikion - Best wishes for an easy day. Will look for your next message to see how it is going.
TinyDancer - Looks like you will make it with your platelets on board!
I'll travel to UNC for my 6 month post chemo check the end of the month.
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Reikon the trial is paid for. You do not need insurance
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Interesting topic - "insurance"... The only expense I know with certainty that the trial covered was the cost of T-DM1. Oh and the trial covered the initial testing that determined I was eligible. I hit the out of pocket maximum about infusion #4 or #5 and stopped paying attention to all of the billing. We'll see what the billing looks like for first post chemo visit required by the trial protocol.
Interested in others' experiences!
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Everything has been covered for me and I am almost done. I was told it would be and it has been
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Reikion, congratulations andwelcome to the TDM-1 club! Good luck!
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Thank you all for the good wishes! I'm doing okay today.
Spent all day at the hospital yesterday. Was there by 9 am for tests and Infusion was scheduled for 11:30 but started around 12:40. Did fine at the beginning but after 1 hour had sudden chills and shivering. They stopped the medication and after waiting for an hour gave me Hydrocortisone and Benadryl. Started again after a 30 min wait - it went fine. Looks like I will be given premeds each time in the future. It was 6 pm by the time we left hospital and 7:30 by the time we got home.
Was tired but felt okay when I got home. Went to bed early but woke up once with severe body aches and threw up violently. Took a zofran and was able to sleep after that. Feeling good this morning. Hoping my body will get used to the drug with future treatments and that the going will get better.
Insurance -- the study covers the cost of TDM1. The regular blood tests, doctor visits, EKG etc are covered by insurance. Since my Kaiser doctor did not refer me, my primary insurance would not pay for these tests. Hence the issue of whether secondary insurance would cover it or not. I'm glad it was sorted out. It is interesting though because there are other Kaiser patients in the study and were referred by their doctor -- in that case their tests are done at Kaiser and infusion happens at trial hospital outside of Kaiser.
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Reikon - welcome to the group! My first day was very long too! I'm sorry you seem to have had a bad reaction, but glad you go through the infusion and are feeling better. Try to take it easy if you can. I usually clear out my schedule and just lie in bed for a couple of days and that helps me recover faster!
Hang in there!
Laura
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Reikion-- Glad you have begun treatment! Your reaction (chills, shivering) is one they watch for on the first infusion. I suspect your body will adjust and things will get easier. Sorry to hear about the vomiting--but again, it would seem you just need more time to adjust to the drug. As for insurance issues, the drug itself and certain procedures are paid for by the TDM1 drug company, as others have said, but there are other costs--the hospital itself has charges for bloodwork, infusion sets, etc. My insurance did cover all of that. When I was diagnosed, we had NO INSURANCE--we had been forced to give up the plan we had been buying privately because we couldn't afford it. My husband's job status changed literally the same month of my diagnosis, though, and for the first time in 3 yrs we finally had an excellent plan. It's so crazy, that the patient has to worry about this crap as though the cancer crap isn't enough!
TinyDancer--three cheers for your platelets! They rallied!
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Thank you Laura and Isabel!
Doing better -- still some nausea but manageable. Hanging in there!
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Reikion, so sorry insurance and money always get in the way of saving your health. I was picked to be on the Caitlin trial ( Kadcyla and Pergeta)and I only pay for appointments, I'm very fortunate. I have only two more infusions and I'm done. I've done well on the trial. SE are the typical runny nose, bloody nose, fatigue, achy, but it's all doable. My livers held up good, and heart too. Platelets lowest are 105, so looks like I'm going to hit the finish line on June 22nd. Hang in there, the time goes quicker then you think.
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Swissm-- So glad to hear you've done well on your trial with minimal SEs. It's amazing to see the advances in treatment, especially for HER2+.
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Hi all,
Had my first mammo since diagnosis today and all's clear. yay! Also, had infusion #15, so only 2 left. I can't wait until I cross the finish line on 7/7! So close....
Laura
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Laura61, I'm so happy for you!
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Congrats on both counts, Laura!!
I had my silicone implant surgery yesterday. Another big milestone checked off! You'd think after four surgeries I'd know this, but I forgot how much more pain there is after the anesthesia wears off, which woke me up at 1 AM last night. Recovery is supposed to be about a week, then I'm off to Florida for a short break before infusion #11! They agreed to let me delay my regular treatment day by 3 days without getting off schedule. Nice that there's at least a little flexibiliy!
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Serenity--so glad this is done now! My Frankenboob welcomes your Frankenboob. ;-)
Laura61--Great news!
Have a great Memorial Day weekend, everyone.
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Thought I'd share... 6 mth post chemo visit. Lots of pages of questions for the trial. Blood draw was trial only (in my case). Talking about "chemo brain"... seem to lose words recently. Talking through things with the research nurse I was reminded how many small negatives are now history => last interaction with her was 12/2015...
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MaggieCat: "...how many small negatives are now history" -- Amen to that.
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