Re: TDM-1 side effects
 

I am now day 4 - yesterday I had a low grade temperature and achy muscles and joints. My appetite was better. Fatigue had me in bed all morning but I was in my garden for a while in the afternoon.

Re: TDM-1 side effects
 

Thank you Lori for bringing this thread to my attention. I read everyone's comments and found the information useful to properly set expectations.
I had my first infusion yesterday around noon at the EAP Stockton site (Dr. Medhi and staff are fabulous.).

I was fine until around 7pm when I crashed. I woke up this morning with a low grade fever, body aches and a headache. I felt lousy all day. Hoping it just means the drug is working.

Re: TDM-1 side effects
 

Nancy, I too pray it is working for you and all the others! Gods blessings to you. I hope your side effects subside quickly!

Re: TDM-1 side effects
 

Hi Nancy and others!

I started t-dm1 last week in Stockton as well. I would have to say my first dose side effects were INTense. I was not expecting this. I've been on the chemo merry go round for years, and this was one of the hardest ever to go through.

I was knocked out for five straight days - today is my first day up. I have mets in the liver - within 2 hours of infusion, it felt like my liver swelled alot, pressed on my stomach and stayed that way until yesterday. So, 4-5 days. Something is still pressing, but not as much.

I was very, very weak - unable to support my own weight. Vertigo at night and am from days 3-5. Strong headaches days 1-5.

I feel much better today, and too hope this is a good sign. I haven't heard of anyone having s/e's like this on tdm1. I will let the trial people know - but wanted to ask here as well.

I, too, felt like it means it working. For me, it felt like I had literally ingested a poison with this first dose of tdm-1.

Did anyone else get any s/e's close to this?

Thanks -

Kim

Re: TDM-1 side effects
 

Hi, Kim!
Wow, it's been a while since we spoke, am sorry that over these last few weeks, never had the chance to give you the time you deserved via phone. So, you're on T-DM1! Congratulations!
I think the platelet wipe is hard, liver mets feel like they are being attacked (and they are), neuropathy...that's my story with T-DM1. This weekend I had swelling in the forearm and couldn't do a 1/4 turn either way.
I never had headaches. Are you on every third week? I go weekly. Any chance you could do that? Either way it's a lot of medicine to take.
Wishing you well, keep those healing vibes alive,
Karen

Re: TDM-1 side effects
 

The chemo delivered in T-DM1 is very toxic. This article explains it.
http://www.usatoday.com/news/health/...pOY92Eo.mailto

So I guess a few have lucked out with only a few minor side effects---good for them! And then there is the rest of us. I am into day 4 and feeling better but still in bed. I do think the pain in my shoulder is down. Hope it is the drug working and not my imagination.

Re: TDM-1 side effects
 

Hi Kim - my response was not so intense. I am day 6 now. Crashed with extreme tiredness within hours of the first infusion, no appetite slight nausea and headache. Day 2 - very lethargic, headache. Day 3 - crashed with fatigue, headache, low grade temp, muscle aches. Day 4 headache and aches but up and about - low temp at night. Day 5 - pretty good but still taking paracetamol for aches in joints and muscles and headache, afternoon rest. Day 6 - so far so good - don't feel normal (!) but ok so far.
I have lung mets - I've felt nothing alarming but have had slight chest heaviness but I also have a viral infection so who knows?
I hope the next one is better for you.

Re: TDM-1 side effects
 

I noticed my link did not copy correctly. Sorry about that. Just google "what chemo is delivered in T-DM1" if you are interested in the article.

Re: TDM-1 side effects
 

Nancy,
I do know one thing: the chemo in T-DM1 was shelved many years ago for being too toxic to give alone.
Thanks for posting.
Karen

Re: TDM-1 side effects
 

Kim (Radiant) I had what you described. Extreme extreme fatigue (I could not get up), bad nausea the first days, pain in the abdomen and in the thorax, headaches the first days...I am now at the 8th dose. The pain in the abdomen and liver disappeared after 2 or 3 infusions. I am not exhausted anymore. Just tried. I still have the heavy chest pressure and other problems BUT many mets are not visible anymore on the scans. So I believe that the terrible exhaustion and the pain was due to the cancer cells dying but it is my own interpretation. The Drs just noted things down. So hang on. After a few infusions it may improve a lot and what I hope is that at your next scan you will see the mets shrinking in your liver.

I am adding a question
My blood pressure is rising ans is now high. The cardiologist wanted me to start a treatment but the oncs asked me to wait. I am very worried about that. Did anybody see their blood pressure raise with TDM1?

Re: TDM-1 side effects
 

Hi everyone!

Thanks for your responses. Michka - I am very grateful to
hear that u had similar s/e's. I was thinking it must be working
to feel this bad, since it's targeted.

I am SO glad to hear this is really working for you. Yesterday
I could get out of bed. Now it feels like bombs went off in
my abdomen area, and that there are holes in some places -
like my liver that my body is working OT to repair. My stomach
area is still swollen and sore. I'm sure thIs means it is
working.

Michka - I saw high bp was a side effect in 10% of folks. I
got bad high bp after being on Avastin for 18 months. I am
now using an essential oil blend to help with my bp - it's working. Plz
PM me if u want to learn more. France is a Mecca for using
essential oils medicinally.

Thanks everyone -

Kim

Re: TDM-1 side effects
 

Not sure if this needs to be just an update on Barb or an addition to TDM-1 side effects. Barb has had two treatments the last on the 18th of Sept. By the 20th she was running a fever of 103.5 and finding it difficult to breath. We ended up in the emergency room where they diagnosed her with pneumonia and plueral effusion. I've read where pneumonia can be a side effect, has anyone else experienced this. Shes had 11 days of oral antibiotics (Levaquin) as well as three infusions of Vancomycin early last week. All appeared well untill we decided to take a short trip to the coast this past weekend her fever returned along with a persistent cough so we returned home and had her at the doctors office Monday where the started another round of the Vancomycin. Hopefully the fever leaves before her next scheduled treatment next Tuesday. So I guess were not sure if this is helpfull for you TDM-1ers out there.

Re: TDM-1 side effects
 

Hi,
Sounds like the pneumonia might be an aside from the T-DM1. Of course, I'm not a doctor, but we also have life's general ailments. Hope Barb is feeling better.
Karen

Re: TDM-1 side effects
 

I am now a week post my second dose. My bloods were fine. Second dose a week ago and this time no fever - just mild joint pain and fatigue and some nausea on day 2.
I'm not sure though how it is working. I have an asthmatic type of cough which I am not sure is post viral (I've had an upper respiratory tract infection) or the lung mets progressing. Progress scan on the 29th - hoping for a stable result.

Re: TDM-1 side effects
 

I had my second infusion 3 days ago. It is amazing how different this one was from the first. Very few side effects so far--mild headache, joint pain and severe dry mouth. But I have been on high doses of prednisone since 10/10 for pneumonitis. I believe the steroids made the difference. Will see next time when I am not on the steroids. They were concerned that I continue to loose weight--5 lbs in past three weeks. Because the cancer has attacked my cranial and vagus nerve, I have a difficult time swallowing. Eating is a chore and I am really sick of Ensure. But I am hopeful T-DM1 will kill the cancer lesions on the nerves nd in time they will regenerate. My right vocal cord was paralyzed at my first recurrence 3 1/2 yrs ago. This time it hit my left vocal cord (controlled by vagus nerve) so my breathing and speaking are severely affected. I had to have an emergency trach during radiation treatment. Can't wait to get this out. But T-DM1 has to work first and the nerves have to regenerate---a lot to hope for.

Re: TDM-1 side effects
 

Hi Nancy - it's sounds like you are having a rough time. Glad this dose was easier - hopefully you will get good results so those nerves can regenerate.
Is the pneumonitis treatment related?
I rang my trial coordinator about my cough yesterday and he said there is another lady like me with lung mets and her cough became worse and first two scans showed stable then the third showed dramatic reduction - guess we all respond differently.
Seems we are pretty close in our schedule with this - are you on Theresa trial or compassionate access? I am due for scans on 29th October.

Re: TDM-1 side effects
 

Amanda,

I have pneumonitis from radiation. I was denied on Theresa trial because of the radiation I received for severe pain. But I got into expanded access. Yes, we are similar. I was put on Tykerb and herceptin on my first recurrence. I was on this protocol for 3 1/2 years but I think it only worked for a little over two years.

It really breaks my heart to see young moms saddled with this fight. You are way too young to have to deal with all this. I really pray T-DM1 works for you so you can focus on your daughters.

Re: TDM-1 side effects
 

I would like to ask about your blood work results while on T-DM1. For those who have been on this for awhile, do the platelets get hit hard every time or just when you first start taking this drug?

Re: TDM-1 side effects
 

Hi, Nancy,
I've been on one year.
Platelets: YES. Hit every time. But rebound for next treatment. Expect bruising, too. I am on a weekly dose and close to the end of my trial. No tweaking until then. The study I'm on is to examine whether it's better to dose weekly or otherwise.

Best of luck to you,
Karen

Re: TDM-1 side effects
 

I haven't had any issues so far - bloods for two doses all completely normal.
I had my first scan yesterday - 7 weeks, 2 treatments - Stable lungs and smaller mediastinal nodes. Trial onc feels lungs are slightly better though not measurably so - nodules slightly less prominent though I wonder if he is just being optimistic. Report says some marginally larger, some marginally smaller, target lesions unchanged - overall tumor burden the same.
I am happy for stable but hoped for more.