Recent update
 

I know that I have not been posting much lately but with dealing with going to the doctors/testing, working, and dealing with my most recent - hip replacement, my time seems to fly away from me.

I just want everyone to know that I am doing pretty well from my hip - am driving, walking without any assistance, but still have a bit of pain on that side.

The most exciting news is that I just had a Pet Scan done and they do not see "any" tumors. It is one year now that I am on the Herc/DM1 trial. My onc. is extremely pleased as you can imagine my and my family.

It has caused me low platelet counts which go up and down and lately I can't seem to keep my potassium level up but other then a few minor inconveniences, it is rather easy to take.

I just pray that F & D approves quickly so it can be avail. to everyone.

Everyone take care.

Irene, happy to see your post. I am glad that you are recovering well from your recent surgery. I am even happier that you had a great pet scan. I think this t-dm1 thing sounds very promising and I wish it were available to all of us. I hope things continue to look up for you and that John is doing well. Wasn't he supposed to have some surgery also? Anyway keep up the good work!

Irene,

So happy to see your post. It gives me lot of strength and hope. Wish you all the best.

Julie

Great news, Irene. I also hope the FDA approves this so that we all have something else in our arsenals.

Colleen

Great news!
Did you have liver tumors when you started TDM1?

Yes Rich
 

I did have liver tumors about 5. This last year was the most I ever had. In my liver, spine, neck, close to the pancreas - I had never had more then 2 at a time in all of my 13 1/2 years and never in my bones, this is what is so amazing. Last June I had about 16 tumors.

I just pray that it keeps working for me and for anyone who can get on the trial.

Thanks to everyone for their well wishes

Irene,
I SO love to see a thumbs up on your post! I too hope that this drug progresses quickly through to approval.

If it didn't hurt so much, I'd also congratulate you on having a hip replacement. Ha! Guess you showed them (still being here so many years later that you're not only outrageous but falling apart!) You know I said that in the spirit of love and joy, so please don't report me on the "Stupid things that people say" thread! You know I'm thrilled to hear you are doing so well.

Question on the trial, since you've been on the trial for a year, will they roll you over into the continuation trial? That is much less intense in terms of monitoring - fewer office visits etc.

It is so good to hear from you again!

Briliant news. Successes like yours continue to give hope to us all that we can and will triumph over this disease.Hope your hip continues to improve.
Hugs Ellie

Hi Chrisy
 

Good to hear from you . How are you doing on the trial. Have not seen anything lately regarding your progress.

And yes to your question. This last treatment was # 17 which will now take me to the continuance. My trial co-ordinator is working on that now. I have had some issues with my plalets and potassium being low and my belirubin has been on the high side. I just hope this does not hold me back from continuing.

How have your counts been?

So good to hear from you my friend.

Recent update
 

Wow !! What great news !!!!!!! Keep up the great work !!
I hope Herceptin DM1 is approved by the FDA soon.

WOW - so great to hear from you Irene and even better to hear you are doing so well considering - you wonder woman you! You are an inspiration http://her2support.org/vbulletin/ima...ons/icon10.gif

Blessings
Hermiracles

Doin fine!
 

Hi Irene,

I was also worried about being DQ'd from the continuation trial, for me it is elevated liver enzymes. I still also have low platelets, usually at the lower level of normal. But my onc nurse assured me there was NO WAY this would happen. After all, one of the purposes of the trial is to assess long term S/E, so they need all of us old lab rats!

Any S/E that didn't cause you to drop from the parent trial shouldn't prevent you from entering the continuation trial if you are receiving benefit from the drug (which you clearly are!)

Funny thing for me was, my LFT's were so consistently high (you remember my liver cleansing ritual of daily beet juice and carrot salad!) that now I'm back on the 3 week schedule. They restage prior to entering the continuation trial, so my elevated LFT's are my new normal! So that keeps me within treatable range. Although I'm still diligent with the beet juice and carrot salad, I do sneak in a glass of wine now!

The schedule is much less intense - no interim office visits. That is great for me since I had a 75 mile commute and I really was not happy getting up at 5am every Monday! Scans are also much less frequent...which of course NOW scares me even though before I thought they were way too frequent! I have scans at the end of June (let the scanxiety begin!)

So, doing well over all - and again, I'm SO glad this is working so well for you!!!!

take care
Chris

Irene,

Great news all around. You inspire me.

Joan

Irene,

Glad to hear you are doing well. I am glad to hear about the success of the medicine from the trial.

Amelia

Irene,

It is sooooo wonderful to hear from you and to read you are recovering.

It is also good to read the trial is working for you. Despite some challenges you are doing well and you are always an inspiration to me!

chrisy.. so you are now in the continuation trial.. congrats.

run

Irene and Chris, you two continue to inspire me. thanks for making time to share what's happening. ma