Transplant Journey

The War is not over!

The celebrations had begun as we thought it is all plain sailing from here. We were on the home stretch we all thought. Well, the cancer cells said otherwise; “you may have won the last battle but the war is far from over”. Today, Thursday, August 16, 2012 I had a DLI. A topup! DLI stands for Donor Lymphocyte Infusion.

Why? Because my BCR-ABL count has gone up again. BCR-ABL is the cancer cell. The count is still at very low levels but it is the trend that seems to be worrying my Consultant Haematologist. My BCR-ABL reading before the transplant was 47 and soon after the transplant it dropped to 0.04. It then steadily rose to 0.1, 0.21 and then 1.04 at which point I went on Dasatanib, a cancer drug. Dasatanib is part of the tyrosine kinase inhibitor family of drugs. They help to break down the BCR-ABL (cancer) cell so that the blood stream can then attack it. If you were in the chronic phase  (early stage) of Chronic Myeloid Leukaemia (CML), you are treated with these tyrosine kinase inhibitors. They help to control the growth of cancer cells.

Dasatanib helped to bring down the BCR-ABL (cancer cell) count to 0.1 (from 1.04). However, over the last 8 weeks it has started its slow rise again, this time from 0.1 to 0.16 and then 0.55. They measure these on a logarithmic scale.  I am not sure I fully understand the implications of using a logarithmic scale.  When we are talking of such great variances, I can see why they would resort to using a logarithmic scale. To fully understand its significance, I’ll have to go back to my Consultant.  What does it mean to have readings that show 47 (before the transplant), 0.04, 0.1, 0.21, 1.04, 0.1, 0.16 and 0.55 in a logarithmic scale as opposed to a liner scale?  My Consultant says that it is only a molecular relapse as the blood counts are normal.

Donor lymphocyte infusion is basically getting more of my brother’s blood cells. The idea is that lymphocytes from the original stem cell donor (my brother) are given through a drip, after the transplant, to augment an anti-tumour immune response (i.e. fight the cancer cells) or ensure that the donor stem cells remain engrafted. These donated white blood cells (lymphocytes) contain cells of the immune system that can recognize and destroy cancer cells.

The goal of this therapy is to induce a remission of my cancer by a process called the graft-versus-leukaemia effect (GvL). The donor blood cells can attack and control the growth of residual cancer cells providing the GvL effect. It is hoped that the donor lymphocyte infusion will cause GvL and lead to a remission of my cancer

Usually patients might require standard chemotherapy, to reduce the amount of cancer cells they have prior to their donor lymphocyte infusion.  In my case, my blood counts are normal and therefore there was no need to go for chemotheraphy. This is only a small setback.

In the past,  the only treatment option that offered relapsed bone marrow transplant (BMT) patients hope of a cure was another bone marrow transplant. However, the risk of serious, life-threatening complications after a second BMT is great. One strategy of managing relapse, donor lymphocyte infusion, might eliminate the need for a second BMT in some patients.

It is probably not entirely correct to say that I had a DLI today as what I got was a combination of Stem Cells and Lymphocytes. Today I got 0.5 l. They also increased my dose of Dasatanib from 50 mg to 100 mg. They will look for donor lymphocytes from Mahesh, so that they can give me just the lymphocytes. Unfortunately, they will have to do the virology tests on Mahesh again before they take more cells from him. This time he will not need a GCSF (Granulocyte colony-stimulating factor) prior to donating the lymphocytes. What this means is that it won’t be as uncomfortable as the previous time when he donated the stem cells.

They will test my BCR-ABL (cancer cell) count in 8 weeks’ time and if there is no improvement I will get a second DLI. The next time it’ll be1.0l (double the dose) and if this does not help they will increase it to 5l (5 times the dose) after another 8 weeks.

It is possible to have complications after a DLI. The main one is the famous ‘Graft-versus-Host’ (GvH) disease which I’ve managed to avoid up to this point.

The good news is that this is only a minor setback.

Anyway, next Saturday, August 25, is my big day. Walking Lesley-Ann down the aisle at Foxrock church and Shereen will be singing Ave Maria. I can picture it all and it’ll be a great day for celebration. My next post will be my speech!

That is all for now folks!

3 replies on “The War is not over!”

Dear Raomal, ur news made me realise I had been thinking of u, especially over the last few days, and did not know why!
I trust that these steps they r taking with u will work, thank God Mahesh is there as a donor.
I will b thinking of u on the 25th, a great day for all of u, especially Lesley-Ann!

We have been thinking of you as well with the wedding approaching so fast. What a wonderful day that will be!! Naturally we will hold you all close in our thoughts. This new development will spur us to increase the prayer support. We also pray that the doctors take effective steps to halt the current phase. Our fondest love surrounds you. May God Bless you and the family. Have a memorable day of the 25th, and know we will be there in spirit. Love you lots. Ralph Uncle and Asoki Aunty.

Hi Raomal, 6 days to learn how to dance and write a speach that has to communicate everything about Lesley-Ann and you have only 5 minuites to present before you loose their attention! Your incredible faith will see you and Pat through this, so give thanks to God and Mahesh.

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