The Diagnosis and Prognosis - by Ane and Mark

Below is what Mark wrote about our day yesterday and what we learned from the oncologists.  Today we will go to the temple and consider all our options including the Gerson Therapy and other natural therapies along with the ones below. 

As for Rachel we have decided that both Mark & I will fly to Ecuador on March 15 so that he is there when we tell her.  At that point we can tell others and not be so concerned about anything getting back to her. 

Yesterday was another interesting day.  We met with two Oncologists, both leaders in this area, and had an Echo cardiogram. 

From the doctors we learned:

      Diagnosis

1 I have stage 4b Metastatic Melanoma with innumerable nodules in both lungs, one on the liver, one in the heart, one in the lower abdomen, one in the muscle tissue of the back, thighs and hip.  None are seen in the brain but they want to do an MRI of the brain to be sure there are not small ones that don’t show well on the PET scan.  They also want an MRI on the heart.

Prognosis - MD Anderson Prognosis
Our Portland Oncologists, Dr. Smith and the one we went with Dr. Walter Urba prognosis:

2.      A few years ago our appointment would have been brief, "get your affairs in order, sorry."  Now, you should still get your affairs in order but there are options and hope.

3.     Given my current state of health, which is pretty good, if we did nothing we are probably looking at 6 months to a year.  The average with this condition is 6 months.

4.     The latest option, only two years on the market is a drug called Zelboraf.  It only works on melanoma with the BRAF mutation. So the first step is to send my biopsy tissue sample to a special lab that will determine if I have that mutation.  About 50% of melanoma has this mutation.  If so we will start with this drug, which is just a pill with relatively minor side effects and in most cases shrinks the tumors and extends life by 4-7 months.  Then the cancer figures out a way around the drug and starts growing again.

5.     The next step, or the first one if we don’t have BRAF mutation, is Proleukin or Interleukin-2.  It is an immune system accelerator.  The process is one week in the hospital that is kinda pukey, then the first week out kinda weak and then a week OK then back in for a second pukey week, out a month and back for a third week.  They have a clinical trial going on right now that first radiates one of the tumors before using the Proleukin, which is supposed to dramatically increase the results.  Currently 10% shrink tumors for awhile and 1 in 17 have no disease for 3 months to 10+ years.  With the radiation first pre-trials showed 70% response instead of 10% and they don’t know about cure rates.  With the trial, if you don’t get in the part of the trial where you get the radiation first you can get it before another treatment later.  You can’t get the radiation first unless you are part of the trial, or at least insurance won’t cover it.  This one has the potential of a home run cure on 1 in 17.

6.     The next step is Yervoy a new drug that stops the natural breaks in the immune system so that it can fight the cancer with no limits.  Tests have shown 15% have tumor shrinkage and a 5% cure rate.  Several potential side effects and overall extending life from 6 months to 10 months.

7.     We asked about the t-cell therapy that Jorge’s friend used and found successful.  Dr. Urba told us that if we are interested he would call Dr. Rosenburg in Bethesda, MD who developed it and uses it the most.  Dr. Smith was concerned about this treatment because it takes time to grow the good cells and there is a risk they won’t grow and in the mean time you are just waiting.  It is also very invasive as chemo is used.  For some this has been very successful. 

I also had an Echo cardiogram, Ultra Sound of the heart, and saw the inside of my heart beating just fine.  The tumor in the right ventricle, which leads to the lungs, was growing there with four flat fingers hanging down flopping in the breeze, or blood as the case may be, but didn’t look to be in the way at this point.  There is some concern about the “fingers” breaking loose and floating to the lungs.  Oncologists think that is unlikely.

So, in summary there is a lot going on in this field which certainly gives hope.  Cure is an option but rare (5%-10%).  Extensions of time seem likely, but are more in the month’s category than years.  While we were racing to the ER on Tuesday because they were concerned about the “glob” in my heart Ane was thinking “at least months! not today.”  It all seems to be a matter of perspective.  We very much like the idea of many years but we will prepare for less.