Update 11.12.2019

Appointment with Sarah Poplar, Haematologist 9th December, 2019

Several issues were discussed

FISH test result *– this a test done on the biopsy of Thomas’ bone marrow to determine the generic ‘type’ of myeloma he has. The results were inconclusive and they will try again at a later date to get another sample. Apparently it is quite common to not get a result as the culture of myeloma grows very slowly – sometimes too slowly and then the sample becomes useless, as in this case. What this means is that, we won’t know a true prognosis as the type determines how aggressive the cancer is. Myeloma is relatively a non-aggressive form of cancer but one particular type is more so than the others. (as I understand it)

* “Myeloma genetics is an important piece of the myeloma puzzle. The most commonly run genetics test is called the FISH test. A fluorescence in situ hybridization, (FISH) maps out the genetic material of a cell. It uses special fluorescent dyes that only attach to specific parts of the chromosomes.”

Thomas asked how long he can expect for a remission to last.

Sarah said between 3-6 years before a new line of treatment is required. Rarely, there have been remissions lasting 10 years but they are very rare. So Thomas is currently on the first line of treatment that will possibly last 2 years. We haven’t asked if the treatment continues if he goes into remission earlier than the 2 years. That’s a question for next time. We are planning on Thomas being in the 10 year rarity framework.. or longer.

Autologous Stem Cell Transplant

Sarah focused on informing us about this round of treatment as it will probably happen after the 3rd or 4th monthly cycle of his current line of treatment. This is when Thomas will have an extraction of his bone marrow stem cells and these will be frozen. Then Thomas will have an extremely large dose of Chemotherapy. After this, he will have his cells transferred back to him so he can grow healthy cells. Then Thomas will have about a 3 month break from chemo injections and we’ll be able to go traveling for a while. This might line up nicely with New Zealand’s winter. I am still reading up about this treatment. We are unsure if this goes ahead if he goes into remission beforehand – another question that we were both wondering after the meeting.

Thomas’ current condition and response to treatment thus far

We are extremely happy to report that the cancer in Thomas’ blood has dropped from 54points to 18points. This has amazed the doctors and shows a very promising outlook for Thomas. He is responding well to the drugs, change of diet and life very well.

He is eating well, lost 8kg, working and concentrating well and is beginning to lift a bit more than he has been. We are living on the boat in the marina and he is managing the walking and movement on the boat well.

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