Update - and uber-scanxiety!
 

Hello friends,

I have not posted much over the past few months, as they have been quite challenging and a more than a little scary. Its still scary.

I've been back in limbo - actually for the past year - and trying like hell to find something that will "work".

The good news is that I feel pretty good and seem to be functioning ok and my liver numbers and blood counts are better than in months...still I have some "new pain" in my lower abdomen which is unexplained and some liver pain that MAY be the tumor or MAY be residual from a liver biopsy in December.



My "miracle drug" TDM1 quit working about a year ago, and so half of 2011 was spent (wasted?) waiting and watching to see if that was really true...and the second half of the year was a not so successful scramble to find something else that would get that stupid cancer back under control. A series of "oh, lets try this trial" (no, your "numbers" don't qualify) then "OK, lets try Xeloda" (looks like its working...oh wait, hmmm no it's not).

Very frustrating and scary as I said.

I've now had 2 treatments in a Phase I trial at UCSF of MM302, which is a similar theory to TDM1 - it's a chemo/her2 target mix. As it's a "first in humans" study I'm really truly a lab rat now. Although I hear that monkeys have done quite well. The study objectives are to find out dose and toxicity (mine is of course, that it WORKS!). Courtney was in this study as well, before her brain mets went awry.

I have scans next Tuesday, so will know more next week - if it's working, or if I am back on the hunt for an effective treatment. Although I'm not the first person in the study, I am the first one they will evaluate at UCSF... everyone is on pins and needles (especially me) so I'm hoping to perform well for everyone!

Any good vibes, prayers, etc....appreciated

I sure hate this dumb disease!

Re: Update - and uber-scanxiety!
 

Chrisy

I am praying that your scans will show good results. Sending lots of hugs and good wishes from Canada.

all the best
caya

Re: Update - and uber-scanxiety!
 

Hi, Sister Chrisy,
I have my first scans on Wednesday since starting this trial 09-093, which is Taxol, MCC DM1 and Pertuzumab (my randomization). We are all looking for the magic formula and I can certainly sense your frustration. We do have many good things on the horizon, and the Pertuzumab is likely to be approved within months. I have heard that Merrimack's 302 works similarly to Adriamycin. Have you had any side effects?

Best wishes for stellar scans and remember you were a trailblazer for so many on the T-DM1 with great results. You will find another, you will, you will.

Love
Karen

Re: Update - and uber-scanxiety!
 

Thoughts, prayers and great vibes coming your way! Thoughts, prayers and great vibes coming your way! Thoughts, prayers and great vibes coming your way! Thoughts, prayers and great vibes coming your way! Love, Brenda

Re: Update - and uber-scanxiety!
 

Chrisy,

Ok. This sucks. That said, I think there is a treatment out there that you will respond too, or rather your cancer will run from! My money is on you and that new combo. I hope you won't be offended if I now dub you our resident "Mighty Mouse" since you have declared yourself a rodent (lab rat).

I will keep you in my prayers, my friend. I know your counts are good, but how did you feel post infusion on this new combo? Karen said the 302 is similar to Adria. and that is a beast for many. Did it knock you down for several days or was it tolerable?

Hang in there, M.M.

Re: Update - and uber-scanxiety!
 

I hear, feel, know your frustration, fear & anxiety!
Know that you have every thought, prayer, love, light & good vibes coming from the Atl and from all your family of friends here from all over the globe.
There's lots left in your medicine cabinet of options and there will be something for your to beat back the monster.
Hang tight & keep the faith, my friend.
Hugs~
Jml

Re: Update - and uber-scanxiety!
 

First of all I am glad you are feeling okay physically. That is a good sign. However, I feel your stress. It is normal to feel anxiety and/or stress just before a scan.
If the latest cocktail doesn't seem to be working how about Herceptin, Tykerb and Taxol or Abraxane?
Even if you have had some of those drugs in other combinations trying them in a different combo might produce better synergy.
Sending good vibes, a prayer and of course I will keep my fingers crossed for you.
The best thing you can do for yourself right now is to take good care of yourself and keep putting one foot in front of the other. Treat yourself special. Take yourself out to lunch or get a little pampering if you can

Re: Update - and uber-scanxiety!
 

Prayers from South Jersey...

Re: Update - and uber-scanxiety!
 

All good thoughts, vibes, wishes, and prayers coming your way. Thinking of you.
I hate this dumb disease too. It is truly stupid.
love,
k

Re: Update - and uber-scanxiety!
 

Chris,

I am sitting here writing...deleting...writing...deleting...it is just so hard to come up with the right thing to say. I hate that you are so scared and more than anything I hate this stupid disease and the havoc it reeks on the lives of such special people. Please know that I am holding you close in my heart and praying that you will receive the best news possible from your scans.

Re: Update - and uber-scanxiety!
 

Chrisy, Something is out there just for you. I hope your scans are wonderful, and you get back on the right road. Keep your chin up and look forward. My thoughts and prayers and vibes are with you. Keep going.

Re: Update - and uber-scanxiety!
 

Adding my prayers that your results are great!

Re: Update - and uber-scanxiety!
 

Karen and Laurel -
MM302 has Doxil as the chemo component - so yes,its an anthracycline and has proven efficacy in breast cancer. That's one reason the research team and my oncologist are excited about it.

So far I've had few noticeable side effects. No nausea , or even fatigue just a slight hand-foot thing which is a doxil s/e , but may just be still a hangover from the xeloda. Maybe the fact that I can, and am walking regularly again is helping my energy level. WBC and RBC are a little down, platelets are up but for me they were so depressed after tdm1 it is good to finally see them heading the right direction!

I'm in the 4th dosing cohort (I think!) so hopefully at a point where there is efficacy. My onc told me prior to starting that they had already seen a response at one of the other locations, so Ihope to continue THAT model.

Re: Update - and uber-scanxiety!
 

Chrisy, I too am praying you hear good news! Gods blessings to you.

Re: Update - and uber-scanxiety!
 

This is really important and we all get that, and all our best thoughts are pointing to the best possible outcome for you.

The OTHER drug conjugate was a good one for you so I have every expectation that your body will like this one as well.

I know what it is like to try to be ready for any kind of result, but with an upbeat, rather than a downbeat. It is a tough teeter totter to ride.

My prayers are asking for the new pain to be from the treatment working!

Re: Update - and uber-scanxiety!
 

Chrisy, you sure have my prayers and good vibes. Praying that the new treatment will work. Love ou and a big hug.

Re: Update - and uber-scanxiety!
 

Very best wishes for a great result Chrisy.

Re: Update - and uber-scanxiety!
 

Chrisy,

I'm sure the discomfort is from the biopsy you received in December!

Sending you good vibes...

Re: Update - and uber-scanxiety!
 

Chrisy,
As we all know, Adriamycin worked for so many, despite its reputation of being The Red Devil. It's tough on the patient but tough on cancer as well. I am glad to hear you are tolerating the 302 with minimal side effects and hope you continue in the right direction...and won't forget how you urge us on when we need it. Remember, everyday, someone puts a key into a lab door and turns it and that could be our day...possibly, and I have to hang onto that and want you to, too. I'm hearing that we are well on our way to eradicating HER2, and I believe it. I have to, I have an 8-year-old who needs her mommy.
Love
Karen

Re: Update - and uber-scanxiety!
 

Chrisy,

I am adding my prayers and healing thoughts to the many, many, many here that love you. Praying for good news from you soon.

Love,
Maureen