TDM1-Are my Side Effects Normal?

[WayTooYoung]

Hello Everyone,

I have recently finished my second treatment of TDM1 and am experiencing some symptoms I am wondering are normal. Below is a list of them...

-migraine/headache in left temple (uncomfortable pressure inside head)
-chest pressure
-joint pain (mild)
-heavy and multiple periods (during 1st treatment)
-blood work showed extreme elevation in liver enzymes (one wk/post treatment)
-low white cells and platelets
-shedding(very light but noticeable)

I would appreciate it if anyone can chime in with their TDM1 experiences. Not sure if this drug is as tolerable as I had initially thought.

Nelly

[tricia keegan]

I'm sorry to read you're finding this tough to tolerate Nelly, I have no personal experience but hope someone else can help you and just wanted to wish you well on this study.

[chrisy]

Hi Nelly,
I was on TDM1 for a long time, and experienced many of the S/E you describe. Low platelets is probably the most common one. Many people (myself included) also have elevated LFT's. I'll comment below by line on my experience:

-migraine/headache in left temple (uncomfortable pressure inside head) - Not exactly, but I did have mild headache/flulike symptoms 2-3 days after infusion.
-chest pressure I did not experience this
-joint pain (mild) - I did have this
-heavy and multiple periods (during 1st treatment) I was post menopausal, so don't know
-blood work showed extreme elevation in liver enzymes (one wk/post treatment) Whoa baby, yes I did. AST was off the chart, with ASL and ASP also elevated.
-low white cells and platelets WBC not so much, but platelets yes
-shedding(very light but noticeable) Well, I didn't NOTICE it

I also had, day 4 of my first infusion, pain at tumor site. I wonder, does the chest pressure seem like it might be that? I'd get that checked out if not.

Overall, in the grand scheme of things, TDM1 is NOT as easy as plain vanilla Herceptin, but is far far more tolerable than traditional chemos. Also to consider, if you are in the Pertuzumab arm there could be additional side effects.

Hang in there!

[Vicky]

Hi Nelly,

I just came off tdm1 after it kept me stable for 10 months.

Headaches- no

chest pressure- yes... mild to begin with, but after awhile it became uncomfortable at some point and had a complete heart/lung work up. For me it was coming from a distressed GI tract. I was put on a proton pump inhibitor (prilosec) and given a round of carafate. The symptoms eased up after that. But definitely mention to your onc!

joint pain- yes, especially the first few days after treatment

Heavy periods, YES- not multiple in my case, just very heavy complete with PMS and cramps

Liver enzymes elevated- yes, but not drastically so...

Low blood counts- yes, again not drastically so, except for my platelets which were close to the cut off for not being able to do chemo, but I was given the go ahead by the study.

I did shed initially- not a lot, but some. But then as treatment went on, my hair became lush and thick and people kept asking if it was a wig!! Ha

Chrisy was right on about the fact that Pertuzumab could also be combining with the tdm1 to give some of the symptoms.

Just keep holding on! tdm1 totally wiped out my liver mets after 3 treatments and shrunk the remaining tumors. They then stayed stable for 10 months. Fingers crossed you will see a similar response!

[Cellomomof5]

Hi Nelly,

I've been on T-DM1 since May, and will finish my clinical trial of treatments in April.

My experience was that many of the side effects you mentioned lessened over time. My LFTs were so high initially that I had to have my dose knocked down at first, but after a few treatments they stabilized, and I was allowed to re-escalate the dose. They are still high, but have slowly dropped over the months.

My white cells & platelets are low, still. Some nosebleeds in winter, but not too much.

Headaches - only during the first week - better as the months have gone by.

Chest pain - only the first few treatments, then stopped.

Periods - non-issue - they stopped back with Adriamycin before I even started T-DM1.

No shedding. My hair seemed to be growing slowly at first, but it has sped up over the past couple of months.

Joint pain and muscle aches - this has been the most annoying for me, and the side effect that has not lessened over time. I take lots of Advil - particularly during the first week after a treatment.

Still, as Chrisy said, it sure beats regular chemo! I hope things improve for you.

[WayTooYoung]

Thank you ladies for sharing your experiences with me. I had my second treatment March 1 and unfortunately, it's taken me much longer to recover. I actually felt feverish and thought I was about to come down with something but somehow I managed to stave it off. However, now I have laryngitis!!! It started with a sore throat a couple days ago and then bam, my voice just cut out. Its been like this for two days now. A dry cough is slowly developing now...I hope it's nothing serious. My family DR is away till Thurs...I'm hoping that I will be better by then.

Wishing you all the best in your treatments,

Luv,

Moi

[Pray]

Dear Moi, I do believe you are living up to your saying! You are so strong keep up the good fight. I'll be praying for you.