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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
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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...
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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.
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Re: Update - and uber-scanxiety!
Adding my prayers that your results are great!
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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.
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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.
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Re: Update - and uber-scanxiety!
Very best wishes for a great result Chrisy.
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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 |
Re: Update - and uber-scanxiety!
Chris
You know where my thoughts are....saying prayers that you will be the shining star you aways are....and your scans will show the Dr's what stellar results are! Sending nothing but positive vibes, a few stamps, and some magic! |
Re: Update - and uber-scanxiety!
Hey Chris Y. I know you'll perform well ... you're a star!!!
Need a good laugh today? I was going through Tiptoe's steamer trunk and I found a Genentech cookie (thought I had already eaten them all.) The date on it was 2004 ... so I ate it.... a 7 year old cookie. Stay strong woman. I know you'll find what you need. |
Re: Update - and uber-scanxiety!
Pink - ill bet that cookie was still good! My record is a two year old one...guess I'm better at sniffing them out!
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Re: Update - and uber-scanxiety!
Thank you all...it's still scary of course, but somehow I do feel better
Karen, wow, you really nailed it. I wonder about that - how I am so unable at times to accept for myself the truths and encouragement I so readily see for everyone else! And I have met many of those researchers you spoke of, whose most fervent hope is that this will be the day;that their effort will be successful; that we will be saved. Not so that they get money or fame or glory, but because they have a personal agenda to win the battles we fight. Very inspiring to me, although I never miss a chance to tell them to hurry things up! Thanks for those reminders. |
Re: Update - and uber-scanxiety!
Chrisy,
You know those of use who are in the same boat know EXACTLY how you feel. Wait and watch, wait and watch. You just need to put your positive hat on and know this or some other treatment will get you back to NED. I know your results will be as stellar as you are. Holding positive thoughts always, Emelie |
Re: Update - and uber-scanxiety!
Chrisy,
You are our pioneer in blazing successful trails for these new drug combos. Keeping my fingers crossed that this one is another silver bullet. If this doesn't work magic, there are so many alternatives both old and new available. I am proof that good old friends such as Abraxanne can work its magic a 2nd time and with a very high quality of life. Then we have Big P (can't spell it, certainly can't say it) coming in this summer. +++ more in the pipeline. I am sure your fantastic Drs. wil continue to seek the most innovative solutions available and you have the courage to give them a try. This is going to work out for you!!! Keeping the faith...Lori |
Re: Update - and uber-scanxiety!
Chris, I will think of lab rats in a whole different way from this day on! I certainly will be praying and believing that the "blend" is perfect for you. ma
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Re: Update - and uber-scanxiety!
Chris,
You're in my prayers every single day anyway...but I'll pray even harder for a good scan next week. With love, Denise |
Re: Update - and uber-scanxiety!
Chris
You were my inspiration when I joined this board and you remain so to this day. I hope and pray for really good news for you soon. I keep hearing that her 2 will be the first bc they cure-that day can't come soon enough! Roll on total her family blockade! Ellie |
Re: Update - and uber-scanxiety!
Chris, one has to admit that MM302 is not a very sexy name but it sounds good to go after stupid mets! Keeping my fingers crossed until the next scans. Hugs. Michka
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Re: Update - and uber-scanxiety!
Chrisy,
I hope beyond belief that you get the scan results we all so fervently wish for you. Stay strong cos you really are amazing! Jenny x |
Re: Update - and uber-scanxiety!
Chrisy, I pray for good scan results for you.
Amelia |
Re: Update - and uber-scanxiety!
Chrisy, please know that I am on the bandwagon for all positive news for you. With prayers and fingers crossed, Ceesun
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Re: Update - and uber-scanxiety!
You got 'um sweet Chrisy.......Much love from my heart to yours.
Mary Jo |
Re: Update - and uber-scanxiety!
And your new drug does have "M&M" in it. I noticed even though Caya and Pink, our official chocolites, did not. So it has to be doing something good.
I cheer and root for you and many others here every day. And the day will come when this cancer thing is done and gone. |
Re: Update - and uber-scanxiety!
Hoping for mmgood.
Sending love, hugs and a TON of strength! We are with you. Love Flori |
Re: Update - and uber-scanxiety!
Cris, and Karen too,
Sending lots of good thoughts as you wait for your scan results. Hoping you can "use" the angst of the waiting to heighten your awareness and enjoyment of some good moments in the coming days. But knowing there will be moments of anxiety, too -- and again, sending love and good thoughts for all of it. Out there on the cutting edge(s) where you two are, it must be amazing. You're dealing not just with "the usual" stuff of treatment, side effects, and response -- but with everyone's (researchers, practitioners, patients) emotions and hope for success. If you're in the mood, would you talk about that part of it? I have no idea what it's like, but can imagine that there are both good and hard things about being in this position? Debbie Laxague |
Re: Update - and uber-scanxiety!
Hi, Debbie,
Thanks for your good vibes and wishes! I'm not worried, get the results tomorrow. My CEA is just a few points above normal, they've been taken down by half after six weeks alone. The rest of the bloods look good, so tomorrow, when we see how well the regimen is doing in terms of measurement now that my oncologist is in ATTACK MODE, I'll be sure to let everyone know. I also feel a sense of responsibility and need to do well because I'm the first on Pertuzumab. Looks good so far, let me tell you. I have full trust in my oncologist and her nature and mission, and I know she would never put me in harm's way. So I'm letting it all happen under her watch. Thanks so much for asking about this "part" of treatment. Love Karen |
Re: Update - and uber-scanxiety!
Debbie L -
You always say the most perceptive things - and you are SOOO right, the way way cutting edge side of the house is very different, even different from the still cutting-edge but further along in the process area of Phase II studies. I will post more later on this topic, I have even more perspective on this than I did in San Antonio... Have to go to a meeting with my boss right now tho:) |
Re: Update - and uber-scanxiety!
Chrissy you don't have to have a sexy treatment--you're sexy enough already! We know you were the sexpot on stage at the Genentech reception! I actually think thats why they asked you to be a part of the group!
Keep being our trailblazer..... Keeping you and Karen in my thoughts and prayers. |
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