Today was our pre-op day consisting of three appointments. Our first appointment was with Dr. Ross the surgeon who will be removing Cleve's tumor tomorrow morning. His treatment plan is to remove the entire area of lymph nodes under his right arm. His term was "curative intent"... to remove all possible nodes so that the melanoma cannot return to that area. The tumor will then be immediately taken to the lab and harvested to create T-cell lymphocytes. This is where lymphocytes are made to combat against the tumor. They harvest millions of them and then freeze them for future use. When we do end up using the T-cells, as I understand, Cleve's current white blood cells will be removed and replaced with the new T-cells via infusion. This will be an option when everything else fails. It is a huge procedure equivalent to a bone marrow transplant and would require a lengthy stay in the hospital, this is why it is our last resort, at least we have one. Dr. Ross seemed to be a very nice man, very sure of himself and of his work saying he's done thousands of these procedures. The procedure itself will take about three hours, and Cleve will only need to stay in the hospital for one day. He will have a drain from his wound for about two weeks at which point we can remove at home. He may experience some slight lymphedema (swelling of the limbs) although unlikely.
True to any doctors office form we ran about an hour late with Dr. Ross. We then moved over to see Dr. Hwu who fit us in since we missed our scheduled appointment an hour before. If I had any doubts about what direction we were taking Cleve's care in, it was all erased after visiting with her. She has a way about her that makes you feel completely at ease and confident in the current course of treatment. She has a confidence about her without the slightest tinge of arrogance which is sometimes difficult in brilliant people. She makes me feel comfortable and hopeful and thats the type of person I want to surround myself with. We told her that Dr. Hamid in L.A. had planned to radiate his sacrum after the axillary node has been removed and then put him on ipilumimab. She said she has decided against that treatment plan because in studies patients have only shown about a 5% decrease in tumor size when put on the medication along with Zelboraf, the trial drug Cleve has been taking that is now FDA approved. She also said that one of the main side effects of this highly toxic drug is colitis, which Cleve will also be experiencing as a result from the radiation to the sacrum. She had a patient who did both, he perforated his bowels and ended up dying. She just doesn't want to take this chance with Cleve who is otherwise healthy. So, to recap, we are removing the nodes from his axilla and radiating his sacrum back at home, which in theory should stop the progression of the tumor in his sacrum. The next step is to have Cleve continue taking the Zelboraf and then have PET scans performed every two months to keep an eye on any metastasis. We asked Dr. Hwu about why, after a few weeks of reprieve the tumor started growing again. She said that B-RAF mutation was being suppressed by the drug and should continue to do so as long as Cleve is taking it, but that other cancer cells within the tumor are mutating causing the tumor to grow again. When the tumor is removed tomorrow it will be tested for other gene mutations which there may be a medication for, but not to hold our breath. As long as we follow this plan we should be able to catch anything new that pops up, and between Dr. Hwu, Dr. Hamid and Dr. Poisson, we should be able to implement the next steps of his treatment fairly quickly.
Our last appointment of the day we were too late for, we arrived at the office at 5:10 and they closed at 5:00. This was his pre-anesthesia appointment. So, this will be done when he checks into the hospital at 6:15 tomorrow morning.
All in all, I feel like we are back on track and getting the best possible treatment that we can get Cleve. That optimistic button has been pushed again. It's a grueling, tough battle, but we are not backing down from it. You know, one thing I have noticed while in Texas is that in the particular area of town we are in, it is FULL of hospitals and very sick people. We are surrounded by the University of Texas hospitals, the Shriners hospital, St. Lukes, city block after city block is hospitals. So many sick people fighting illness or for their life. It puts life into perspective very quickly because it seems that there is always somebody worse off than you are that you just walked past, and when there are shuttle vans running 16 hours a day to get patients from their hotel to their hospital and then back again. It's a very humbling experience and I hope and pray that none of you ever have to go through it. So with that being said, please take care of yourselves and your loved ones. And one last thing, Walker and Gavin, mommy and daddy love you and miss you very much. We'll see you soon babies.
