I will post pictures and information about Dave's golf tournament tomorrow.
Dave had an appointment with Dr. Watson yesterday. He is the oncologist/radiologist that Dave will be seeing for treatment. At Dr. Watson’s request, our family went with Dave to his appointment. We met with the doctor so he could explain some things to us and answer any questions we had. This is, as I heard it, from the doctor. I hope you will forgive the frankness of this post. The nurse told us that most families find it easier to deal with this kind of a difficult situation if they are honest and talk about the hard stuff together. She said this includes talking about the treatments, side affects, and even how much longer he has on this earth.
Transplant
First, let me say that the transplant is not an option as of right now but it is the only cure for Dave. Without a transplant he will have to battle the cancer for the rest of his life. According to Dr. Watson, his tumor would have to be no more than 5 or 6 cm for a transplant. (This is contrary to the 8 cm that we were told by Dr. Walentyne.) Dave’s tumor was 12 cm last time he was scanned. (Today the scan indicated that it has probably grown. That will be explained below.) Dr. Watson is confident that he can shrink the tumor. He said that it will be difficult to shrink it enough for Dave to have a transplant. He said, “Shrinking a tumor that much is a remote possibility. His chances are not zero, but not great.”
Radiation
They did a CT scan today to pinpoint exactly where the lymph node tumors are so that they are ready for the radiation treatments to start next week. The CT did NOT show that the cancer is spreading to any of the organs near his liver. (YAY!) There are two lymph nodes that each have a tumor. The tumors are right next to each other and were measuring (last time they were checked) at 6 cm total. However, within the last month they have grown to a total of 8 cm. That is a VERY fast growing tumor, which also leads us to believe that the main tumor has grown as well.
So the radiation on the lymph nodes will begin next Wednesday at noon. He is scheduled to have the treatments every day for 11 days (business days) in a row. The side effects from that include nausea, cramps, and fatigue. He will take a pill every day about an hour before the treatment to help with the nausea.
Nexavar
Dave asked the doctor if it looked like the Nexavar (the pill to stop the growth) was working at all. The doctor said no and that he wants Dave to stop taking it. He is concerned about it affecting the blood vessels in the liver. If the medication weakens the blood vessels then he won’t be able to have the Therasphere treatment. So the Nexavar is out for now.
Therasphere
Dave’s mapping procedure showed that most of the dye went where it should have. About 9% ended up in his lungs. Usually they only see 2-3% in the lungs. They can do the procedure at 9%, but we need to pray that his blood vessels will stay as intact as they are. Unfortunately, Dave’s insurance has said that they will not cover the Therasphere treatment. It is a very expensive thousand treatment. Dave’s doctors are working tirelessly to explain to the insurance that Dave needs this procedure. They feel confident that the insurance will have to pay for this because it is medically necessary for Dave to have. It seems like it will take some work to educate the people at the insurance company. We are going to do everything we can to get our needs heard and addressed by the insurance company.
Until we have a ‘yes’ from the insurance company, Dr. Watson doesn’t feel comfortable with putting that financial burden on our family since there is another option. A treatment called TACE, Transarterial Chemoembolization. “TACE, a procedure in which the blood supply to a tumor is blocked (embolized) and chemotherapy is administered into the tumor.”
See http://www.medterms.com/script/main/art.asp?articlekey=20525
Dr. Watson would rather fight the insurance for Therasphere because the side affects are easier to deal with. Since TACE uses a form of chemotherapy, the side affects can be ugly. However, Dr. Watson did say that some patients react with very few side affects because every one is different. When I asked Dr. Watson how long we would wait for the insurance company before we decided to go on with the TACE procedure he said, that the radiation will start next week and he doesn’t want to start the other procedure until the radiation is done. We will want to know by the end of the radiation if the insurance will pay for it. Otherwise, he will start TACE procedure. (Dr. Watson said that the TACE procedure is more easily covered by the insurance since it isn’t as new.)
With either of those procedures, it is likely that he would have the treatment done a couple of times. They will be done 2-3 months apart. (If his liver function stays where it needs to be for the procedure.) The first scan they do after the procedure will not be useful. It will likely show that the tumor is worse than before. That is normal though. They will do a second scan later and it should show that the tumor is shrinking.
The median survival rate for a positive (meaning good) response to the TACE procedure is 16-19 months. (Meaning that on average patients live that much longer. 50% live less than that and 50% live longer than that.) The positive thing about Dave’s situation is that he is actually pretty healthy (other than those pesky tumors). Also, the Doctor said that the healthier a patient is going into the treatments, the better the patient will handle the effects, and the healthier the patient will be coming out of the treatments. Right now, tumor and its effects aside, Dave is reasonably healthy. He eats surprisingly well and keeps his food down, which is good because it will keep his body strong. His diabetes is mostly under control due to the major weight loss he has experienced and his liver is functioning very well for a tumor that size. Also, Dr. Watson says that the healthier a person is going into these procedures the better their chances are. In other words the procedures work better on healthier people.
This last month has been difficult, with the news, the waiting, etc. But, I know God loves us and will bring us comfort and support, come what may. Our family has decided to help Dave live the rest of his life with joy, love, and passion for life. If he eventually gets a transplant and lives a long life, then he will be able to look back on this difficult time and remember his family, his friends, and having the time of his life.
Dave would like to mention that his darling wife Kaylene has been such a blessing and support to him. She has worked so hard to take care of Dave and their home. Kaylene has also been a great blessing to Dave’s kids and family as well. We are very grateful for her strength, support, and wisdom during this experience. We are so blessed to have her in our family.
God Bless
Matt and Kelly
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Dear Dave and family:
ReplyDeleteWe will continue to pray for you and for your family. How blessed you are to have so many people who love you so much! It would seem that there is a lot to be learned here. May our Heavenly Father bless you with the courage and wisdom to learn the hard lessons this experience has to teach you and your family. May our Heavenly Father's choicest blessings be with you! Love, Scott and Gayle Randall (from the Kenya Nairobi Mission)
The only cure for my cancer was a bone marrow transplant, but my wife and I prayed about it, and we refused the procedure. My oncologist told me that with that procedure, my 25% chance of survival would have diminished significantly. Specialists in SLC tried to convince us to do it in spite of everything, but we didn't. I began chemo again after my cancer's return after a brief remission of just a few months. It was devastating, and I wasn't sure I wanted to continue. I prayed about it, and I had an answer to continue. My answer gave me no guarantees of survival, but the answer told me that it was that the process would work out for my family. Immediately after, my oncologist and friend gave me two weeks to two months. I mentioned that to you before. I'm still here.
ReplyDeleteA year later, my doctor told me that there was no explanation for my survival, because those who looked far better had not survived, and those who tried the transplant didn't survive more than a very short time, at least those who were my age and a bit older.
An oncologist at Mayo Clinic told me the same thing. There was no reason for my being alive. And he told me no one else survived that drug trial out of Loyola University on the East Coast.
Dave can beat this thing. As all of you pray to get the help you need, answers come, and miracles happen. But most importantly, Dave will be at peace knowing that things will work out according to the "plan." Faith can help us survive disease that puts us in peril before our appointed time is spent here. I told him how many people felt so sorry for me, and many of them are no longer here. Almost all of them were in perfect health.
I hope for the best for you. I want only you and your family and Dave--if you think this will help him--to read this comment. Please delete it after you check it, because it really is something I don't like talking about, and I know that Dave is also very private about talking about these same issues.
It has hard for me to see him haunted by this horrible thing. I hope and pray for all of you, especially my old buddy and mission companion. He is a special one.
I had two companions that were ones I felt that were truly friends--A. Craig Walker, my second senior, and Dave. He was an incredible, hard working and positive. But most importantly, he was a friend with everyone. Good luck in the coming weeks. I left a message on facebook about my coming to visit next week. Let me know when things will work best.
P.S. Don't let anyone tell Dave to give up and enter into eternal rest. It shocks me how many people do that. They kept doing that with me and my wife. Dave will know when it's time, and God knows too, but others can only speculate. Tell them to keep their lack of faith and speculation to themselves. And give Dave my best.
ReplyDeleteI have an MA in English, and I am very skilled at putting a detailed statement together if you need any help presenting things for an insurance company, but I also know that Kelly's writing is exceptional. If there is anything I can do, please let me know.