All,
My mom has been sending out updates about my dad, so I have decided to post these here as well. There is a long story that goes along with my dad's battle with cancer, that starts about 5 years ago. Without going into the history I will just post the update, because that is more important.
My mom has been sending out updates about my dad, so I have decided to post these here as well. There is a long story that goes along with my dad's battle with cancer, that starts about 5 years ago. Without going into the history I will just post the update, because that is more important.
Well Hello Everyone….
It has been awhile I know, just haven’t had anything good to report. I am going to start off by telling you last week was probably the worst week since diagnosis last December. His last biopsy showed that Rob was definitely NOT in remission and in fact, leukemia was back stronger than ever. We were also told that we were on the verge of having no more options…..THAT WAS SOMETHING I DID NOT WANT TO HEAR. But as I have mentioned before, we have a wonderful doctor, and he is not ready to give up on Rob and was going to contact the one of the drug companies that is doing a trial study for AML patients with a new drug. He had told us about the study, but Rob did not qualify for the trial study due to some of his other health issues, mainly his heart. Well to condense this, Dr. Myint felt that this new drug could be helpful to Rob so the drug company was contacted. One big problem was that since this is basically an “experimental” drug neither our insurance nor Medicare would pay for the cost…..trust me BIG deal. The cost of the drug is somewhere between $45,000-$50,000. We don’t have that just laying around!! So the drug company was asked by UCH to make a compassionate user donation of the drug for Rob’s treatment. They started the ball rolling on that Monday….well by Thursday afternoon we still had not received approval. Dr. Myint worked his magic by calling a vice president of the drug company that he knows and has a “good relationship” with and Friday morning we were given approval at absolutely no cost to us. HALLEUIA!!!! Rob started on this new drug, Clofarabine, Friday afternoon and it goes for 5 days. Today is his last dose. They are administering it with a combination of another drug, and from what I have read on this, they have experienced good results. Rob has in the past appeared to breeze through his chemo treatments. This one has been different. It is really kicking his butt and he is experiencing some of the side effects that he has escaped in the past. I take this as a good sign…..I know he probably wants to throttle me when I tell him that I am glad because maybe it means it is really working. Well, they do labs on Rob daily, and when he started last Friday, his leukemic cell count in the blood was 6000 or so, as of yesterday, the doctor said the count in his blood was .500! Everyone is thrilled with this and doctors are VERY encouraged. We now are hoping that this drug is wiping out the leukemia in his bone marrow also. We think he will be having another bone marrow biopsy next Friday – that will be day 14 after initial administration of drug. They may want to wait until day 21….we are not absolutely sure. All in all, we are very encouraged. With this drug also, we’ve been told that WHEN Rob goes into remission the wait time until the Bone Marrow Transplant can be done is shorter. They have not located a suitable donor as yet, and it is my understanding that if a donor cannot be found, Rob will probably have to have a stem cell (birth cord) transplant. Good results have been achieved with this also. I will let everyone know how things will be proceeding when I know more and can share more information with you all.
It has been awhile I know, just haven’t had anything good to report. I am going to start off by telling you last week was probably the worst week since diagnosis last December. His last biopsy showed that Rob was definitely NOT in remission and in fact, leukemia was back stronger than ever. We were also told that we were on the verge of having no more options…..THAT WAS SOMETHING I DID NOT WANT TO HEAR. But as I have mentioned before, we have a wonderful doctor, and he is not ready to give up on Rob and was going to contact the one of the drug companies that is doing a trial study for AML patients with a new drug. He had told us about the study, but Rob did not qualify for the trial study due to some of his other health issues, mainly his heart. Well to condense this, Dr. Myint felt that this new drug could be helpful to Rob so the drug company was contacted. One big problem was that since this is basically an “experimental” drug neither our insurance nor Medicare would pay for the cost…..trust me BIG deal. The cost of the drug is somewhere between $45,000-$50,000. We don’t have that just laying around!! So the drug company was asked by UCH to make a compassionate user donation of the drug for Rob’s treatment. They started the ball rolling on that Monday….well by Thursday afternoon we still had not received approval. Dr. Myint worked his magic by calling a vice president of the drug company that he knows and has a “good relationship” with and Friday morning we were given approval at absolutely no cost to us. HALLEUIA!!!! Rob started on this new drug, Clofarabine, Friday afternoon and it goes for 5 days. Today is his last dose. They are administering it with a combination of another drug, and from what I have read on this, they have experienced good results. Rob has in the past appeared to breeze through his chemo treatments. This one has been different. It is really kicking his butt and he is experiencing some of the side effects that he has escaped in the past. I take this as a good sign…..I know he probably wants to throttle me when I tell him that I am glad because maybe it means it is really working. Well, they do labs on Rob daily, and when he started last Friday, his leukemic cell count in the blood was 6000 or so, as of yesterday, the doctor said the count in his blood was .500! Everyone is thrilled with this and doctors are VERY encouraged. We now are hoping that this drug is wiping out the leukemia in his bone marrow also. We think he will be having another bone marrow biopsy next Friday – that will be day 14 after initial administration of drug. They may want to wait until day 21….we are not absolutely sure. All in all, we are very encouraged. With this drug also, we’ve been told that WHEN Rob goes into remission the wait time until the Bone Marrow Transplant can be done is shorter. They have not located a suitable donor as yet, and it is my understanding that if a donor cannot be found, Rob will probably have to have a stem cell (birth cord) transplant. Good results have been achieved with this also. I will let everyone know how things will be proceeding when I know more and can share more information with you all.
I apologize for not getting something out to you all sooner, but trust me, I was in no shape last week. This week, we are hopeful again and I really want to believe that this drug is going to put Rob into remission and the transplant will be done soon. One of the worst things for Rob through all this, is that again hospital has become home. He has been in for over a month so far again and I think with the transplant looming close, it will an even longer stay for him. I know he wants to come home and believe me I want him to come home too. I just want him well.
Please everyone, as I say each and every time, please keep the prayers coming I just know that they are working. I wish I could put into words just how much your thoughts and prayers mean to both of us.
I hope all is well with you and your loved ones. Our thoughts, believe me, are with you all too.
Love to all,
Linda
Dad, I love you and miss more then words can say. - Boo
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