update and query
 

This is mainly to get advice from those on TDM-1.The hospital rang up and wanted confirmation if Hema's tumor block was with them.Then they went on to add that she may have to sign papers for the TDM1 trial if the results from the block are what they want.I just want to hear what are the main side effects for those who are on TDM1.Thanks

Re: update and query
 

I had to sign a lot of papers for the TDM-1 when I received it....unfortunately, I only received 3 rounds and I had spe progression and was taken off....seems the side effects are some fevers (mild) and flu
Ike symptoms.....hope Hema can get it and has no issues with it. Seems it is a miracle for those it works on!!!

Re: update and query
 

I just spoke to an oncologist today about TDM-1. She said there are hardly any side effects. Also a friend of mine who was very, very sick began taking TDM-1 and feels much better. Her appetite and energy level are returning. Her liver is healing.

Re: update and query
 

I really hope Hema gets TDM1 and responds quickly and positively!
I was enrolled in the TDM1 Extended Access Program in August 2010 but was only open for a short while before it was shut down.I flew (day trips) from Atlanta to Nashville to get my infusions.
My disease had progressed the furtherst it had ever been, unresponsive to 2 previous regimens & I was really not doing well - weak, lost so much weight and my mom came from Hawaii to stay & watch over me.
I responded immeditely, and after the 1st infusion an intramuscular met, just below my belly button melted away, in addition to the disease that had spread throughout multiple retroperitoneal nodes(belly) and I'm sure other places.
I had great response for 6 months, then a PET scan discovered 2 small lung lesions, so I was booted out. I was devastated, as throughout my decade with this disease I've had lung "things" pop up and resolve, inconsistent with how the rest of my body was responding.
Since then, the disease that the TDM1 knocked back has not reappeared (YAY), though as you know I have had other recurrences. But the TDM1 did an amazing job decreasing my tumor load and I anxiously await it's approval so I can have it in my medicine cabinet.
After 7 bed-ridden months, TDM1 got me back on my feet, back to travel, back to work and back to independence.
I think it is such a travesty that the FDA pulled the expedited approval in spite of how well many have responded. I can only hope that it will be approved soon, early 2013, and without the crazy confusion & restrictions that access to Pertuzumab has come with.
Crossing fingers & saying prayers for Hema!

Keep the Faith,

Jessica

Re: update and query
 

Pibikay,
Some side effects can and do occur on T-DM1, and I have some: neuropathy, nosebleeds, runny nose, even some hair loss. This week, after being on it for seven months, my eyelashes and eyebrows thinned out again. It has not interfered with my full head of hair, though.
I really hope Hema is admitted. Always wishing you the best,
Karen

Re: update and query
 

keeping my fingers crossed.

Re: update and query
 

Oh, I forgot the major side effect: low blood platelets. They really take a hit with each infusion, so bruising and bleeding can become an issue. But, it is still much easier than other regimens I have been on. GOOD LUCK!
Karen

Re: update and query
 

Well we got the consent form today and I am supposed to give it back on Monday.Hope the computer puts her in Group i taking TDM1

Re: update and query
 

Thinking of you both and praying she gets the TDM-1.

Amelia

Re: update and query
 

Great news - thinking T-DM1 thoughts for HEMA!!!

Re: update and query
 

Don't have my history updated, but took TDM-1 on trial Nov 2010 as nothing was working on a cluster of peritoneal tumors. Was very pleased with not only the response, but how tolerable the drug. My CEA 27-29 was over 526. I'm a gal that had been treated for metastatic disease several time with no marker ever greater than 150. Scary time (aren't they all?) but after 3 treatments significant improvement. Unfortunately, like the other two gals I got booted out of trial as had a lung lesion get bigger. Hated it as it was really working. The rub is that 10 months later, had the lung tumor biopsied and it was negative for cancer. So I am looking forward to the day TDM-1 is available to all, as many women have had great results. That is why there is a big push to "fast-track" its FDA approval. Most of all, I am sorry you and your wife are having to walk this tough path, but praying God will grant her His healing touch through this TDM-1 trial. It's worth the paperwork!!!

Re: update and query
 

Pibikay,
How are things moving along? Thinking of you,
Karen

Re: update and query
 

The block has been sent to Roche's central lab in Basel for evaluation and their report is awaited any time.Incidentally Hema had her Onc's visit for her check up today and he was satisfied! He called Roches coordinator who informed him that we will know the position in the first week of August.Npwadays she is complaining about pain in the calf muscles when she walks
Thanks all of you

Re: update and query
 

Sounds very promising for Hema to get the drug.

About her calves. I have had that as well as cramps that I still get from time to time.

Some nice massage with Arnica cream or gel helps me. You may have an Ayervedic product for massaging into her legs and feet that will help.

All the best, and hope that huge blackout did not affect you!

Re: update and query
 

Pibikay,
I have had more muscle cramps and aches than ever. Sometimes, my toes stand straight up and get stuck, fingers lock, general body aches, etc. Still, it's worth it, still working. Wishing for Hema to get on T-DM1 immediately.
Warmly,
Karen

Re: update and query
 

Hope the TDM1 came through today.

Amelia