Thursday, August 30, 2012

doctor visits

Blood work looked good yesterday.   The doctor said I looked great.  Not to brag, but most people tell me that. :)  It's a little crazy, you would never know to look at me.

I had lots of questions for the doctor, but figured we will know more in a couple weeks after the scans.  I had the dates wrong, I will be scanned on the 10th and find out results on the 11th.  This was a relief, as Josh's birthday is on the 12th (the day I had it in my schedule) and as superstitious as I try not to be...well, we just weren't excited about it being on a birthday this year. 

The doctor did clarify that if we were at a point at needing more IPI, we could do the testing again and see if that would be a possibility.  I was very relieved, as I'm pretty freaked out I would loose my mind if I felt another tumor.  Knowing there was a medicine out there that would help it, and I couldn't have it.

So far, though, I do not feel more tumors.  Just one stubborn tiny one on my rib that has not changed. 

I took one of each of my anti-emetics last night with the Temodar, with great results-no nausea!  Slept through the night.  Just a little sleepy now. 

The plan:  I get to reduce the Temodar to every 4 weeks instead of every 3.  We will scan every 8 weeks after this next scan.  We still have radiation as an option if the brain mets persist.  We may be able to qualify for an Anti-pd1 trial if we can stabilize the brain.  We still have the braf drugs in our back pocket. 

Take-home message from the appointment was that we still have time and options left.  So grateful for both!

9 comments:

  1. Thank you for your posts. I check in often and pray for you and your family everyday!

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  2. Yay for anti-emetics, time and options! So happy for you!

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  3. Yay! You do look so great... Let's keep it that way for a very long time.

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  4. I love good news, I love time and I love a few spare tricks in the back pocket.

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  5. That is great news! I'm glad you have options and that no new tumors have shown up! Hope things are going better with the homework battles and the boys. We just started school and it has definitely been interesting! Love you tons!

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  6. Thanks for sharing your story. Since there are major breakthroughs now for better treatment, I wonder if you follow a fellow Survivor who is also a nurse and has been through several bouts of treatment , the latest being anti-PD1 :
    Chaotically Precise: Life, Love, and Melanoma http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2012/09/21-monthsmelanoma-free.html

    Scan her blog because she condenses the research and sometimes draws conclusions that help her decide what next ? and may also help you. Her husband seeks out the latest and greatest worldwide info so between them, they have lots of trustworthy news to report.

    Also Melancholynoma always has the latest news posted at the end of his posting and it is up to the minute and may be helpful to know. News Roundup:
    http://melancholynoma.wordpress.com/

    Keep up the positive attitude. As you will see on Melancholynoma a good attitude has been recently documented to help.

    Please know that there are strangers out there pulling for you. For myself, I have an interest because my melanoma scare from 1995 was short lived ( you never know) only because I worked at U of Miami Dermatology Dept and didn't ignore a very small spot on my back that most people would have brushed off until it was too late. I read about how many people don't know what to look for, even doctors as in your case, and their "mole" seems harmless. It helps many people that you and others share your story and possibly help get the word out . I hope these 2 blogs can make a difference for you and your family.

    Namaste


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  7. Been thinking about you tons! Hope you are still holding up with the Temador. Love, love, love that there are options and hope left! I feel your pain when it comes to growing boys and a small house :). However, if my house was that stinking cute, I may never want to leave. I'll be praying for you on scan day.
    Much Love.
    By the way - best jam ever!

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  8. SO grateful!! And you look SO beautiful!!

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  9. Here is another very interesting tale of anti-pd1 success like Chaotically Precise.
    Maybe it can work for u.... Melanoma Muppet:
    http://melanomamuppet.wordpress.com/

    Namaste

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