TDM-1 side effects
 

I am currently on a TDM-1 trial and I would love to hear from those of you who have been on it, what your side effects were and how long you were NED on it. Also if you did progress, what your next treatment option was.
These are my side effects after first treatment:
Neutropenia, platelets dropped from 220 to 47 a week later and then back upto 140 two weeks after chemo.
Menorrhagia, the heaviest periods that I have ever had in my life, lasting 8 days.
Cramping in my fingers and toes.
Loss of appetite, first week after treatment, returned with a revenge in 2nd and 3rd week.

I am having great difficulty getting much info on this topic, so any feedback is much appreciated.

Thanks
Fern

Re: TDM-1 side effects
 

Hi Fern,

There are quite a few members who have had experience with T-DM1. I hope they will chime in soon. Meanwhile, perhaps these threads will answer some of your questions:

http://her2support.org/vbulletin/sho...t=T-DM1+effect

http://her2support.org/vbulletin/sho...nce#post248948

Re: TDM-1 side effects
 

Hi Fern,

I am also in a T-DM1 trial - I just had round 3 yesterday. My notable side effects have been:

• Neutropenia - my neutrophils dropped below 1000 and I had to have a T-DM1 dose reduction. Even with the dose reduction, they are still low.
• Muscle and join aches, pain & cramping - consistent throughout the three weeks - worst in hands and feet
• Mouth sores & dry mouth - better with dose reduction and a prescription for Chlorhexadine

Other side effects have been minor (drippy nose, mild platelet reduction, liver enzyme elevation). I also had loss of appetite the first week that "returned with a revenge" the second week - I ended up gaining weight overall, and am working hard to try to stabilize it. My doctor suggested drinking tonic water to help the muscle spasms - I'm going to try it. My night sweats & hot flashes have increased, but they think that is my hormones still all over the place since the A/C - I haven't had a period in three months.

I don't know about you, but for me, the achiness and stiffness is pretty significant, and hard to live with. Every time I sit or lie down, getting up and going again is painful! The rest is livable. I'm hoping I adjust to it as the year passes. How long have you been taking T-DM1?

Thanks for posting this - I've been interested in hearing how others are faring. Which trial are you in?

Re: TDM-1 side effects
 

Hi Karen,
This is the clinical trial which I am on.
http://clinicaltrials.gov/ct2/show/N...m=tdm-1&rank=2
I was on the comparison arm but switched to TDM-1 when the doctor called progression in first left rib. The cramping was only bad for me in my fingers and toes, immediately following my first infusion. Today will be my second infusion. I like to take heating pads with me, and place them over the areas where I have the cancer, during chemo to encourage greater blood supply to these areas.
I am also taking a liver detoxifier and regenerator to protect my liver (it contains milk thistle). I will post again after todays chemo. Thanks for replying.
Best wishes
Fern

Re: TDM-1 side effects
 

Hi, Fern,
Wishing the best possible outcome and pain-free treatment with T-DM1! I tried to get it on a trial recently, but wasn't randomly chosen. So far, my new regimen is working very well. I'm hoping that T-DM1 will be approved very soon. I've been hearing late summer (possibly) from an activist. Hope the milk thistle works in your favor. I've been attracted to it as many members here have had great success, but three doctors and a nutritionist I consulted don't want me taking it while chemo is doing its job. Did you tell your onco you are taking it and what did he/she say?
Thanks and best,
Karen

Re: TDM-1 side effects
 

I have had 5 treatments and so far not bad at all. First few days After a treatment I get a mildly bloody nose and drippy, my red blood cells were a little low this time and they think I should eat a little more w/ iron... but my platelets are normal, my white counts are good, my echo has remained stable, no flu like joint aches since my first treatment.

I have mostly had more fatigue, having a "down" day or three (light fluish feeling and more tired) during each 3 week cycle, but that is just down to one day each cycle now. And dry mouth mostly at night when sleeping. Side effects seem to get a little better each time except for dry mouth. (I am in menopause so I can't speak to periods).

Best wishes to all.

Re: TDM-1 side effects
 

Hi fern,

I sent you an email, but adding some comments here re the milk thistle.

I had pretty severe elevation of LFT's and practically lived on a liver detox diet for months - lots of carrot salad, beet juice, green soup/juice and milk thistle. Of course I also ate other stuff:)

My doctor had no problem with these, including the supplements. I also took Olive Leaf and Coq10 regularly and bits and pieces of other supplements during the 3 years I was on TDM-1. The only one they nixed was Curcumin. But I always make sure they know what I'm taking, because of the potential interactions with the therapy.

Brenda is right, the flu-y side effects got less intense for me, too.

Karen, I haven't heard anything about the FDA reconsidering the TDM1 early approval - it might just be wishful thinking, but I hope you're right!

Re: TDM-1 side effects
 

Hi, Waterdream. My oncologist office is in west hills. I live in Chatsworth.Would like to connect with you if possible. Good luck with your treatment!

Re: TDM-1 side effects
 

Please email me at fernsiman@gmail.com and we can connect with each other.
Hope to hear from you soon.
Best wishes
Fern

Re: TDM-1 side effects
 

I wanted to share this with anyone doing TDM-1. Remember that TDM-1 does not cross the blood brain barrier, and so while it works really well for the rest of your body, your brain is unprotected. I know a lady from one of the other boards, who was doing really well on TDM-1 only to discover that she had 15 brain tumor mets, and she was very unhappy with the way she was feeling after radiation. In light of her findings and my poor vision in one eye, I just did a MRI and we found something small in my head, which needs further investigation. So I may or may not continue with the trial. I think on the TDM-1 they should also give the ladies some straight herceptin, which will cross the BBB and give a certain amount of protection. I think they should also switch to doing full body MRI's so that things are caught early, and we don't have to deal with so much radiation from CT scans. Those are just my thoughts.

Re: TDM-1 side effects
 

herceptin does not cross the blood-brain barrier normally

there is some hypothesizing that it might cross once the barrier is affected by tumors

Those with brain mets tend to do better if herceptin is included in their regimen--several hypotheses regarding why have been entertained

Hope this helps!

Re: TDM-1 side effects
 

As Lani said, Traztuzumab (Herceptin) is not known to cross the BBB because of the size of molecule that it is, but theories suggest that it might once the BBB has been rendered "leaky or compromised" either by tumor or other treatments. TDM1 is Herceptin that incorporates a chemo into the molecule, that's what the T is in the name, Traztuzumab.

I am doing really well on TDM1 as well, but I also get 3 mo. brain MRIs along w/ 3 mo CT scans, and when called for, PET scans, so that I know what is going on in my whole body. My imaging center follows all new guidelines that have recently recommended significant radiation reduction of CTs. Whole body MRI is not known to reveal tumors in the torso as CT or PET/CT do. MRI's strength is in revealing (and providing measurement of) tumors in specific areas such as the brain, a breast, an organ, etc. It is not a whole body tool.

Currently, our brains are "unprotected" from getting brains mets. There are treatments that treat brain mets (targeted radiation methods, whole brain radiation methods. or chemos that cross the BBB... such as Tykerb, carboplatin, etc) but no protection from getting mets in our brains. The best protection is thorough and regular scanning to catch anything that shows up when it is early and small.

Re: TDM-1 side effects
 

One interesting drug to watch for will be everolimus (Affinitor). There is currently a Phase III clinical trial for MBC, but I believe this is a trial primarily as a first line of treatment.

In any case, the mTOR inhibitor everolimus is thought to cross the BBB. Everolimus has FDA approval for renal cancer, but not yet for breast cancer. Phase I and Phase II trials for MBC have been quite promising.

Re: TDM-1 side effects
 

I am staying on the TDM-1 trial (Hooray) and do my 4th treatment on Thursday. The Bone met to my first rib and surrounding tissue, has changed in appearance and the soft tissue has gone from 2cm by 2cm to 1.5 x 1.5 cm in a period of 9 weeks.

Re: TDM-1 side effects
 

Brilliant news. Really hope T-DM1 continues to work for you. Please let us know about your brain MRI findings. Hoping its nothing of concern.
Ellie

Re: TDM-1 side effects
 

Curious if the spot they have seen in your head is in the brain or in the skull/optic nerve area? I have had a tumor on my infundibulum that is very near optic nerves, yet didn't sit in a position that affected my eyesight. If it turns out that it is in bony skull area, then it is outside of the brain and the blood brain barrier. Just FYI. Good question to ask your oncologists.

Re: TDM-1 side effects
 

I am seeing the neurologist on Thursday and will discover if it is intra or extra axial. I am just extremely fortunate to still be on the TDM-1 trial. Will keep you updated. Obviously, I am very interested in any treatments that cross the BBB.

Re: TDM-1 side effects
 

Hope you get some good news soon.

Re: TDM-1 side effects
 

Hope it turns out to be benign. Thinking of you and hoping for the best.

Ellie

Re: TDM-1 side effects
 

Hi All...
I too am on the T-DM1 trial...August 30th will be my 3rd treatment..My dose was also changed due to a drop in platelets and high liver enzymes. I also noticed my period was heavier with the second treatment and experienced the nose bleed but not bad. I'm starting to have dry mouth as well. What I would like to know is has anyone experienced difficulty taking a deep breathe or a heavy chest feeling while lying down..this happens to me after the first few days of treatment and usually lasts 3-4 days. Also, this is the first time I'm hearing about the BBB

Laurie :)