Hi,
Good news. Six months ago, Dad had a blood test that showed an increase in his kappa free light chains to 39 from mid 25. We thought it was the tipping point. But we had another test two weeks ago, two years after his autologous stem cell transplant (ASCT), and we were surprised that the number went down to 27. Ratio is almost normal at 1.85.
Dad has no maintenance.
It looks like numbers may still go down even two years after transplant. So for many of you (especially the p53 deletion batch) who are worrying that results may not look promising, please be positive.
Good day!
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Re: 2 years after ASCT for p53 deletion
Thank you for your update, tpt. It is wonderful to hear that your father's myeloma is still under control. I hope it stays that way for many years to come!
Please keep us updated on how he is doing. Perhaps you have some tips, or lessons learned, that you can share with the rest of the forum?
Take care,
Cheryl
Please keep us updated on how he is doing. Perhaps you have some tips, or lessons learned, that you can share with the rest of the forum?
Take care,
Cheryl
Re: 2 years after ASCT for p53 deletion
Hi Cheryl,
Initially, he had a year (10 or 11 cycles) of induction with Velcade, thalidomide, and dexamethasone (VTD) because he was afraid of ASCT. But even then, he had shown signs of being refractory to the VTD, i.e. his numbers have continued to climb despite the treatment.
We convinced him to collect the stem cells, and a year later, ASCT. In between, he had two inductions of VTD. We believe due to cyclophosphamide used during stem cell mobilisation, which have anti myeloma effect, the two VTD pushed the numbers to the low 30s.
Anyway, lesson learned here is not to wait too long for ASCT (our doctor advised to do it after 4 induction cycles). Velcade's and dex's side effects are still felt until today. Numbness does not go away, itches and rashes on the skin persists, and allergies related to dry cough still remains. It could be minimized with lower exposure to the induction therapy.
Initially, he had a year (10 or 11 cycles) of induction with Velcade, thalidomide, and dexamethasone (VTD) because he was afraid of ASCT. But even then, he had shown signs of being refractory to the VTD, i.e. his numbers have continued to climb despite the treatment.
We convinced him to collect the stem cells, and a year later, ASCT. In between, he had two inductions of VTD. We believe due to cyclophosphamide used during stem cell mobilisation, which have anti myeloma effect, the two VTD pushed the numbers to the low 30s.
Anyway, lesson learned here is not to wait too long for ASCT (our doctor advised to do it after 4 induction cycles). Velcade's and dex's side effects are still felt until today. Numbness does not go away, itches and rashes on the skin persists, and allergies related to dry cough still remains. It could be minimized with lower exposure to the induction therapy.
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