Today, July 9th, we spent the afternoon in the Huntsman Cancer Center. It is everything it is advertised to be. The staff is absolutely kind and helpful; the facility is beautiful and state-of-art; there is a library full of resources for patients and their families. Each patient is assigned a team of professionals, including a social worker who is charged with getting the patient any needed emotional, spiritual and social support. Of course we told the social worker that we had an amazing network of supportive friends and family. We are so blessed!
The tumor was C-kit negative, which means that Gleevec (which has the best success rate of all options) will not be effective against Mark's particular form of melanoma. And I guess that is the really bad news: Mark's type of melanoma is rare, having started in the mucosal membranes. There are not nearly as many options for treatment as with the usual type of melanoma. At stage IV, the doctors say that it is not curable, but that it can be treated. Treatments are hoped to extend life a few more months.
The next step is to do a BRAF test on the tumor. BRAF (whatever kind of chemo that is) is the next best choice; it shrinks a tumor in 70% of patients, but the tumor generally comes back in 7-9 months. Other possible chemo drugs proposed have a history of shrinking tumors in 15% of patients, with a re-occurance of tumor growth in 3-6 months. Doesn't sound very promising to me, and the thought of having nausea and other side effects for so little gain doesn't sound like a good trade-off.
Additionally, Dr. Grossman ordered more of some of the same kinds of scans and tests done last month. He wants to see if there is any change in the spot found on the spleen. If it has grown, then the idea is that the cancer has spread and surgery would be pointless. If it has shrunk, then Dr. Grossman would question whether or not the spot found on the spleen is actually the cancer (I would say it is all the good nutrition and Mark's body fighting back). In that case (deciding it is not cancer), they will proceed to test a spot found on the thyroid, which could actually be a nodule commonly found on people without cancer. If both spots turn out not to be cancerous, then the proposal would be to do a radical surgery, removing much of Mark's natural plumbing, along with lymph nodes and surrounding tissue. Of course, it is yet to be seen if Mark would agree to all of that. My own gut feeling is that the thyroid spot is not cancerous, but that the spleen is. However, I would not be surprised to find that the spleen spot has shrunk because we are fighting hard to stimulate Mark's immune response.
To summarize what I think the doctor said today: 1) Mark's best chance at survival is if the cancer really isn't stage IV and hasn't spread as far as originally thought. They are willing to do more tests before they rule that out. If the new tests show that Mark is at a lesser stage, they would want to cut out as much tissue as possible, which would mean a colon bag and possibly five more years. 2) If Mark is really at a State IV, then they would propose a few (limited choices available) chemo options which may add a few months to the year or so they think he has without treatment. 3) Mark should eat whatever he really likes, because it is important that he keep from loosing weight and besides, he should do what makes him happy and comfortable. In other words, "Eat, drink and be merry, for tomorrow . . . .".
In spite of the very bad news, I really liked the doctor and all of the rest of the team. They really seemed to care and I liked the fact that they were honest and straight-forward in approach. However, I believe there is another side to the story - and that is that Mark seems to be doing better. He has more energy, he no longer deals with bleeding, his color is better and some of the melanoma spots which I have personally observed have disappeared. These new tests may confirm my own observations.
I've said it before, and I really mean it - I truly believe in miracles. I believe they can come in answer to prayer, provided that it is in the Lord's plan. I also believe that we need to do our part. And that is just what we are doing, praying and changing diet and doing whatever else we can to support and encourage Mark's body to heal. Mark is in the care of the Great Physician and we trust Him with all of our hearts. We will also accept whatever His will is for our lives because we know and trust that He will continue to love and bless us in the ways that are best for us. Please continue to pray for us - we so appreciate and need your love and support. Love, Laurel
Sunday, July 11, 2010
Posted by Pettyz at 7:47 PM