Two Steps Back, One Step Forward? - 12/19/2011

I know the saying is "One step forward, two steps back" but I am wondering if because I had a few steps back with my last MRI that there is the possibility of the news from the oncologist today being a step forward.  I also contemplated calling this one "The Most UN-Amazing Brain" ... you'll see why after the rest of my blog...

Today Kurt and I met with the oncologist in the morning.  She indicated that my PET scan again showed improvement in both my liver and hip tumors which means that the Ipilimumbab is still working on those areas.  There was also no signs of new tumors!  Good news in my eyes (one step forward).  :)

Of course, we discussed my previous MRI in more detail.  She indicates that the majority of tumors that were radiated in Detroit were still there and the same size although a few have grown a bit.  There is also new tumor growth.  I asked more questions about all of the brain tumors and learned that as long as the tumor(s) remain the same size (or smaller) and no new tumors, they are considered okay.  With the recent MRI showing that I am still producing new tumors (hence "The Most UN-Amazing Brain"), I started the full brain radiation last week.  Because it wasn't clear to any of us, I asked her if the radiation just did not work down in Detroit since I had new tumor growth.  She explained radiation in this way:  stereotactic or gamma knife radiation (direct radiation to the tumor(s) sites - which is what I have had previously) is best described as "weeding" your grass.  You put weed killer on the weed(s) but even if it kills the weeds, there may still be seedlings that could develop into more weeds.  Full brain radiation (radiation to your whole brain) puts a weed killer on your whole brain and hopes to destroy both the weeds and the seedlings.  More on radiation in a few...

So, because the Ipi continues to work on the two tumors, she is hesitant on starting me on the BRAF chemo drug.  She said she'd like to save that option in case those tumors start growing or  I have new tumor growth.  All of the following are options after I am done with radiation:

- Wait it out for 4-6 weeks with no medications; have a repeat MRI (and PET scan????) to see if the radiation alone has helped.
- Ipi treatments again ... although they appear to not be working on my brain so this is probably the option we are least considering right now?!?!
- The original option of the Temador chemo drug (this is the first drug she was thinking of giving me before Ipi became FDA approved).  This drug is used for patients' with brain tumors and tumors usually react to it.  It's a pill each day for 5 days and then you go a month without medication.  In some people there are side effects such as hair loss, nauseau, etc.
- BRAF chemo drug (zelboraf) - two pills, twice a day; newly FDA approved and considered to be working well on melanoma patients with brain tumors.

I did ask if we could take one of the chemo drugs along with Ipi since the Ipi is working on the liver/hip tumors.  She said that there currently is a clinical trial on that so it is not an option yet but that there is an IV drug like temador which could be used with Ipi (which, I am guessing, is another route or option for me as well). 

The oncologist said that if she were to ask 10 oncologists that have worked with melanoma patients what they would suggest, she would get 10 different answers.  So for now I will continue my radiation treatments and we will meet with her after the new year to decide what option we (her, Kurt and myself) think I should take part in. 

This afternoon I had radiation #3 of 10.  It was VERY quick today!  For someone who is very claustrophobic, this radiation has made me a little nervous.  They mold a see-through white form over your head which attaches to the radiation table so you cannot move your head at all.  The first two days my face must have been more swollen because I had the boxes (or "waffles") on my face when I came out - shows how tight it is.  Today I could move my lips a little bit and the radiation was a matter of minutes from start to finish so I was okay!  Only 7 more to go ... I can do it!!!

As for what happens next, I will post as soon as I know more!  :)

Finally, I hope that people know that I blog mostly to get everything that is happening off my chest as it is therapeutic to me; second, so that my family/friends/etc can hear it first hand from me and they are getting the most accurate information; third, if any bit of this information can ever save someone I know from going through this same situation; and, lastly, as with any person who is going through some medical trauma, I am looking for nothing more than support!