Friday, June 30, 2017

Transarterial Chemoembolization

We met with Dr Lao today to review the results of the routine CT scans after three courses of immunotherapy. The scans show that the tumors in my liver on average have doubled in size and a new one has been identified. The tumor in my chest has shrunk and presents a few questions that need to be answered. Dr Lao wants to try the procedure called Trans-arterial Chemo-embolization. Essentially they will enter the arteries of the two lobes of my liver through the artery in my groin and introduce radioactive/chemotherapy drugs to the enclosed liver in an effort to kill or shrink the tumors. He has had some success with this procedure with other patients having metastatic ocular melanomas and he believes I am a good candidate. Again no cure here but hopefully the slowing of growth and some shrinkage for a longer life expectancy.

The whole process takes three trips to the hospital. The first one is with injected dyes to map out the vascular system of each lobe. Then a separate infusion for each lobe. Each takes a day in the hospital and a day of observation before I can come home. It also appears that if I get good results the procedure can be repeated several times to try to get further shrinkage in the future. We are currently waiting to see what the doctors' schedules are like to get started. I suspect I will have the immunotherapy session this Wednesday and then they will be suspended for the TACE procedure and then be resumed afterwards. Sounds like my summer medical schedule is getting booked up...

Had a great time in Cleveland this last week with the kids from Chris;' Youth Group at St John Neumann. Wonderful kids who are excited about their faith and the good works their faith calls them to do.

Peace, Don

Saturday, June 24, 2017

Viral Infections and Cancer Patients


So when you are a cancer patient on immunotherapy, fevers and vomiting are generally not good signs. They want you to come to the hospital to make certain the treatment is not attacking any vital organs. So the wonderful staff at UM ER treat you like a general admittance and do all the necessary scans and lab work to rule out any specific infections. You are then placed on observation until your temperature subsides. This is how I just spent the last two days and am now home resting after a routine viral infection.

I had my routine scans on Wednesday and so while in the hospital my Oncologist came by to check in on me. He told me he had checked the scan results. He saw considerable tumor growth in my liver but no other new sites or growth outside it. He is considering a few options for directed treatment to the liver along with the continued immunotherapy. We will discuss these options on July 5th at my next infusion.

I can only say thank you to all of you who are praying for me. I enjoy your comments and notes on Facebook and text messages.

Peace and all good......

Friday, June 16, 2017

St Kizito Medical Center Report 2009-2017









St Kizito Medical Center when I first saw the building project in 2007.

St Kizito Medical Center as it was in June 2017.









Thursday, June 15, 2017

Infusion Number 3-----

It is hard to believe that three weeks have gone by already since the last infusion. We are finally beginning to get the daily routine sorted out for these days. Blood draw, doctor visitation and the infusion. Each section has its own set of protocols to be accomplished. As I look around and see the literally hundreds of other patients who go through this process I am amazed.

You always know something is up when the nurse who is about to draw your blood goes, "Umm that doesn't seem right." She spends more time on the computer and then says, "Excuse me but I need to look into this. I have never drawn blood for this kind of a test before." She then walks away.

In waiting for her, another older woman enters the drawing cubical with another nurse to draw her blood. The nurse comments on her outfit and how cute it is. She then looks at me and says, "What do you think?" I look and say say, "Yes it is cute to this perfect stranger,"

The woman and the nurse talk about her history and diagnosis and she says she never expected to make it this long. She was diagnosed nine years ago and has been coming here ever since. She says she is feeling fine and she guesses you never really know what is in the plans for you. The conversation goes on and she mentions her daughter who is leaving for Africa with her church as a missionary soon. I mention that my daughter is coming home tomorrow from Africa after a month. We are looking forward to her being home. She says her daughter is going to work with young victims of human trafficking. I tell her about the House of Jjajja Don in Kampala Uganda and our work with young women rescued from the commercial sex trafficking in the slums. She is amazed and says her daughter is going to Uganda to work. We laugh and say God must have wanted us to connect today. We exchange names and contact info so our daughters can connect in the future. I look up and see that my nurse is back, She says, "Don't mind me I have been standing here fascinated by the conversation you too have been having." Both nurses are amazed. I then find out my one test was ordered in error and no one knows why it would be necessary and it is removed from the list of tests. The lady and I know who made the wrong entry which allowed for me to be there for a longer period of time and that allowed me to meet her and have our conversation. You just never know!

Mary and I go to meet with the doctor. I say I am feeling fine. Only reaction is a small rash on my back which seems to be controlled with a skin cream. Just a cheap excuse for getting a back rub I say! We then hear some more genetic testing info that confirms even more so that the metastasized melanoma is the one from my eye. Most skin melanomas have a gene defect in the BRAF gene. Occular melanomas do not and I don't have that one in my test results. Occular melanomas on a 50% basis have a defect on the GNAQ gene which I do have. So now we are pretty sure it is the rare ocular choroidal melanoma that has spread through out my system. Once again we hear that is is an extremely rare cancer and that they really have no known protocols for any effective treatment. The one I am getting is their best hope for a response with 13% of patients having a positive reaction to the drug. The Dr says we will keep you on this course as long as you can tolerate it and the tumors show no further signs of growth or spread. If they do then we can move to a different course that has more side effects but they really don't know if it will be any better in the long run. Mary and I leave and start to laugh with each other and decide that as usual my life seems to be a statistical crap shoot and we will just have to play out what ever the odds are?

I have my first set of scans next Wednesday to see if there is any change in the tumors. We are told that quite often there is a "flare" in the tumors from the initial treatments. The tumors may appear larger and more aggressive. But not to worry as that is expected. The second and third scans after three week courses of treatment will be better indicators of the tumor reactions as long as I can tolerate the treatment. It all seems to be a SWAG but I guess I accept that and hope the treatments work. In the meantime, we have to go on with living life each day.

I cannot tell you all how much I appreciate the prayers, calls and well wishes you have sent to me and my family. In between my naps, you give me hope and courage and for that I am eternally grateful!!!