The History - Part 2

March 1, 2012 - Family Email

Good morning,
I had a bone marrow biopsy this morning. They were unable to get any fluid even though they tried a number of sites. Don't read anything into that, it just happens some times. The soft tissue marrow will tell them all they need to know. Results hopefully by the end of next week since they have to decalcify the tissue first. Dr Buma is quite sure it is not an acute leukemia for which we are thankful. Now we sit and wait. We intend to keep it within the family until we have confirmation of type and stage. Thanks for your prayers and love expressed.

March 7, 2012 - Contact List Email

Greetings,
As most of you have heard I have been having tests for leukemia. Results today have confirmed the earlier diagnosis. I will be going to the Regional Cancer Clinic for further evaluation and treatment. We profess that our help is in the Lord. Pray that we may always cling to our Lord and that He will be exalted in our lives.
Lamentations 3:22-24. "Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him."
In Christ,
Richard & Barb

March 7, 2012 - Family Email

Greetings family members,

I have received test results from the bone marrow biopsy and blood work from last Thursday.  The hematologist at the cancer clinic reviewed them as well as previous blood tests. He is 75% certain that it is CML - Chronic Myelogenous Leukemia.  Requisition for appointment into cancer clinic in London had been sent when he saw results, so I hope to be in there soon.  The last 10 years or so have seen some new therapies come into the market, and they have helped a lot to control the disease and put it into remission. My internet research leads all over the place, and I don't want to get ahead of myself and should wait with predicting plans of attack. The doctor expects that I will need another biopsy and testing for the Philadelphia Chromosome ( particular to CML) which will have a bearing on treatment.

Thank you for your prayers and love!
Psalm 145:17-21
Hebrews 12:1-3

Richard and Barb

March 21, 2012 - Family Email

Good evening family members,

Barb and I went to the Regional Cancer Clinic in London today for our first appointment. A dose of our new reality walking into the clinic for the first time. I had not been to the clinic with Mom, and now going in for myself, gets the mind going a bit. We had to wait for a few hours before we finally got in, will be better prepared next time.

Since my bone marrow aspiration in Strathroy failed, and the biopsy was of poor quality, the numbers they got for that were not satisfactory for nailing down type and planning treatment. I had another aspiration which was successful and another biopsy as well which also was good.  The doctors are pretty sure it is CML but will wait for complete molecular profile.  They explained to us that CML is a completely different disease than AML due to the point in the reproductive cycle of the cells where the mutation takes place. In the meantime my spleen has gotten very large with immature white blood cells filtered out of my blood because their lifespan is different (longer) than normal WBC and are being produced at a rapid rate,  therefore we need to deal with this symptom. I have begun a low dose chemotherapy treatment orally in order to kill these cells which should reduce the size of my spleen in time.  They will create an acid in my blood as they die in large numbers and I have another med to deal with that problem.  I can expect some side effects from these drugs but time will tell which ones and how strong.  We will be returning to the clinic in about 2 weeks for results and figuring out treatment plan. If CML is confirmed they do have some pretty good results from inhibitors that stop the leukemia cells from reproducing and put patients into remission. Not a cure but an effective treatment to beat it down. The doctor called me at home this evening to talk about a Canadian trial for 2nd generation inhibitors that is coming to and end soon, and he wants me to go for tests to register into it so that if CML is confirmed I will be eligible for it. We would then discuss if confirmed to possibly enter the trial.

All in all a good day. Not all the results I was looking for but good samples now, testing being done, and some treatment for symptoms, especially since my spleen has become quite uncomfortable and worrisome. Thank you for your prayers and concern, a great blessing for us. Feel free to forward this email to your children as we covet and appreciate their prayers and love as well.

Pray that the Lord will bless these treatments for the purposes intended, and that we will cling to Him always!

Habakkuk 3:17-19  "Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Saviour. The sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights."

With love,
Richard and Barb

April 5, 2012 - Family Email

Good morning,

I have spoken to many of you already about the visit, but now it will be in print for you as well.

Our hopes for CML Philadelphia Chromosome positive were dashed. All 3 tests on marrow and biopsy and blood came back negative. What that means is that the tyrosine kinase inhibitors that were to control the leukemia really well and give me a good quality of life for quite some years is now no longer available. 90% of CML are positive for this chromosome mutation.

The doctor says it looks like CML, but now calls it Myeloproliferative Neoplasm - undifferentiated. It does not fit nicely into any box. It is cancer, not quite a typical leukemia, but will at some point, likely not too far down the road, become acute. Another blood sample sent in for molecular testing but will not change any treatment or prognosis. There is no wonder drug to keep this under control.  I will be staying on hydroxurea (chemo) for the indefinite future. Once it goes acute heavy chemo mixes to try to get to remission but it will not stay there, will become a cycle that we cannot win. Our hope for a cure, length of life with relatively good health comes down to a bone marrow transplant. Reading between the lines the doctor is saying if we do it before it goes acute the chances of success are increased. He said I am young and otherwise healthy and strong. I have talked to all my brothers and sisters and they are happy to go for testing to see if they are a match.

At this point we are not sure what we are going to do as far as timing. These transplants are brutal affairs with an uncomfortable level of failures which result in death. Do we go through this soon with best chance for success or do we wait until it is uncontrollable with  a lower rate of success but more time lived? Hard question to answer today.

We see doctor again on the 25th with matching results, molecular results, new bloodwork, and a lot of questions. For my siblings I have called the cancer clinic for protocol for testing and will let you know when I hear anything.

Pray for healing, for strength, for faith to fight temptation to despair and anger, for complete confidence in our Lord's care in our lives.

Psalm 71:3 "Be my rock of refuge, to which I can always go; give the command to save me, for you are my rock and my fortress."

Richard and Barb

April 25, 2012 - Family Email

Dear family,
We had another visit to the cancer clinic this afternoon. The oral chemo is controlling the WBC, platelets low but stable and RBC have dropped some and are now in the low rating. Blood test for JAK 2 came back positive. Definitely a myleoproliferative neoplasm unclassified, that is,  it does not fit any MPN exactly. Treatment and prognosis remains the same as April 4 - chemo to try and settle it down and help symptoms but cannot put into remission, and eventual bone marrow failure --  unless we have a bone marrow stem cell transplant.  Still the only possible cure, but as the doctor said a brutal and ugly thing but our chance to beat it. He emphasized that sooner is better, same message as three weeks ago.
Come back in four weeks and then should have results from siblings donor test and see if we have a good match. Then we will talk particulars on transplant.  If no match then international donor list. He estimates a 60% chance of match there. Non family donor would require going to Hamilton or Toronto and having their doctors agree with a transplant, since I have hit 50 years old it is not a given.
Nothing new really, just affirming what was pretty sure before. It will take a few months to get it all figured out and set up. That will take us past Dave and Bethany's wedding:). In the meantime enjoy each day, get our house in order and prepare ourselves for what lies ahead.
Thanks for your love, prayers and actions!!
Ps 91:2 "I will say to the Lord, "My refuge and my fortress, my God, in whom I trust."
You may share this with family members.
Richard & Barb

April 25, 2012 - Contact List Email

Dear friends,
We had an appointment today at the Cancer Clinic. All tests now confirm a myeloproliferative neoplasm unclassified. A mouthful to say the least...
It is a disease that cannot be put into remission with any known therapies. Heavy chemotherapy when it goes acute can knock it back some but has been unable to control the disease.  Our chance for a medical cure rest with a bone marrow stem cell transplant. This is a tough regimen to go through but could give us that healing we pray for. My siblings are undergoing testing for the donor program. I will return in four weeks to see where we are at for a transplant. In the meantime I will remain on oral chemotherapy to help with symptoms. Thank you for your prayers and love for Barb and I, and our family.
Ps 91:2.  I will say to the Lord,"My refuge and my fortress, my God, in whom I trust"
Richard & Barb