Why is good news always followed by bad news for me?

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8/18/2014 1:53pm
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Replies: 4

Had my most recent PET scan on July 17th.  The results were phenomenal.  I had 11 mets "resolved" from the B-raf/MEK.  Granted, that was out of 15 mets and 4 of the ones not resolved were in my brain.  I had whole brain radiation back in March/April so I was sure that I was going to have positive results.  As you can tell from the subject here, the bad news is coming.  We did a Brain MRI last week and as of right now, I have 9 mets in my brain.  Three of the four that were in there grew and the new 5 are all 6 to 8 mm.  The other ones were 2 mm and three are now 6 mm, one stayed the same.

As you can see, this was not the result I expected.  The Oncologist and I both were convinced that the Ipi I did last year was helping the B-raf/MEK.  Who knows, maybe it still is.

Any idea what to expect now?  I only had a heads up phone call from the P.A. and haven't seen the doc yet.

 

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

So sorry. Hang in there.

Dave,

Afraid I don't know what you can expect now.  Just wanted to say I'm sorry for your latest setback and I'm thinking about you.  Hope your doc gives you a good plan of action when you see him/her.

Brian

Hi Dave,

Wondering if you've gone for a second opinion. I've done that a couple of times. Is Stereotactic Radio Surgery (SRS) something your own doctors have discussed? I don't know if it's an appropriate treatment for you but I think a second opinion from Moffitt Comprehensive Cancer Center would be worth it, even though it's a bit of a drive. I've gotten a second opinion and at a treatment juncture.

I believe Dr. Jeffery Weber, the lead doctor of Moffitt's melanoma program, responds to email queries, see his page at http://moffitt.org/research--clinical-trials/individual-researchers/jeffrey-s--weber-md-phd for his email. They may have resources and techniques that your own doctors don't have. 

This video about radiation treatment in the brain for melanoma, and discussing SRS in particular, is the best I've seen. They talk about treating multiple brain mets with SRS, even 10 or more if I remember correctly.

In 2010-2011, I had two craniotomies (a single and a double) plus SRS immediately following each operation, to the resected tumor beds as well as several smaller tumors that weren't resected. I think that video in particular may give some hope that you may have some treatment choices.

To sum up -- get a second opinion (if you haven't already) and get i at Moffitt in particular -- would be my suggestion to you. 

Wishing you the best. Kyle

This sounds very similar to what happened with me this spring. I had 7 brain mets just over a year ago, did Ipi and WBR last summer (Ipi failed miserably). Scans at the end of last summer showed great improvement in the brain, but everything else kept progressing-I also had over 30 mets elsewhere in my body. In December they started me on the MEK/BRAF combo and scans found 4 new brain mets. In January I had the brain mets treated via Gamma Knife. 

Again, follow up MRIs showed improvement, but in May the combo started to fail (I could tell because I could feel other tumors starting to grow). Scans indicated I had another group (about 9) of brain mets, which I had Gamma knife for at the end of May. MRI about 3 weeks later didn't show any change, but I was enrolled in Merk's PD-1 expanded access program, which is where I am currently. PD-1 seems to be working very well (based on observations of my many other tumors). I have scans coming up on Sept 2 an am quite anxious to see what the results are. I've not had any symptoms, so I'm hoping that the MRI will at least be stable compared to the last one (early June). We'll see!

So what to expect next? That's a tough one as every case is different. I went with PD-1, which has been fantastic, but there's also trials for other drugs out there that you may want to consider (TIL, other inhibitors,combos of medications, viruses, etc). Do some research, talk to your doctor(s) and create a plan that makes sense to you. If you don't already, I suggest having an appointment/discussion with a specialist as they may be able to help you find/understand trials better than your local doctor. 

 

Best of luck to you!