Travel to and from Singapore $8,000 Accommodation at hospital (8 weeks) $10,600 Recovery - Rehab, physio and Doctors for 2 years (estimated) $9,400
Total estimated cost $150,000
Haematopoietic Stem Cell Transplant From Dr Loh
Transplant for MS, as I am sure you have read, is not about repairing the brain or spinal cord. Rather, it entails administering high doses of immune suppressing medication with the intent of depleting self-reactive T cells and B cells that are part of your immune system, that is unfortunately mis-behaving by attacking your brain and spinal cord. In the process however, normal white blood cells and platelets will be affected. In order to ameliorate this, blood stem cells are first harvested and stored, then after the high-dose immune suppression is given, the healthy stem cells are infused back to hasten recovery from the low blood counts. Hence, in inflammatory MS still responsive to immunosuppression, this technique has been shown to work. By restoring tolerance i.e. a new immune system that no longer attacks yourself, then the brain and spinal cord can recover from demyelination and with time, physiotherapy and supportive medications, your neurological function can improve. It may not improve fully, as some areas of nerve damage cannot be reversed. But some improvement is to be expected. Some patients still relapse after the procedure and in the worldwide data as well as my own patients, this is estimated at 15-20% leaving a progression free survival of 80-85% overall
How is the transplant done? It is a 2 stage process
Stage 1 is the pre-transplant fitness evaluation (1 week) and if fit, administration of cyclophosphamide + GCSF to increase the stem cells circulating in the blood. 10 days after, stem cells are collected via a procedure called apheresis in which your blood is drawn into a machine via a large vein in your neck, circulated through the machine which selects the white blood cells, and then the rest of the blood is returned to the body. You will be connected to the machine for about 6h for 1-2 days to collect enough cells. The cells are processed in the lab to select out the CD34 expressing cells that contain the stem cells. They are then frozen. This process thus takes about 3 weeks and can be done without hospitalization unless in the unlikely event that there are complications.
2 weeks of rest in between is required at the minimum to allow your body to recover. During this period, patients may choose to stay in Singapore or return to their home country. If you wish to return home, this period can be lengthened also as the cells are already frozen and you can schedule the next step at a later date.
Stage 2 is the actual transplant. It involves you being given 2 medications, Fludarabine and cyclophosphamide for 4 days and then the stored stem cells are infused back to you through a vein. They will take about 2 weeks to recover your white blood cell counts and platelets. Patients are admitted to hospital for stage 2 for safety and monitoring. Approximate length of stay is 3 weeks barring any complications. When the white blood counts are adequate and there is no infection you can be discharged. The estimated length of hospital stay is 3-4 weeks
I advise patients to remain in Singapore for monitoring for at least another 3-4 weeks after discharge to make sure your body is fully recovered. The procedure involves chemotherapy and hence is not without risk with a treatment related death rate of 1%, which while low, is not zero. Following the procedure, your immune system will be weaker than normal for up to 6months so preventive antibiotics will be prescribed. In all, a minimum stay of 8 weeks in Singapore is estimated from start to end, although, if you are able to, I advise staying another 3-4 weeks after hospital discharge in Singapore to ensure you are fully well before travel. So then that would make it a 11-12 week stay in Singapore, with only 3-4 weeks of that time being inpatient. The rest would require you to get suitable accommodation near the hospital and we can provide advice on where so this can be arranged.
I am sure you have been reading up about HSCT and I just want to re-iterate that its aim is tolerance induction so as to halt further attacks on the CNS by the mis-behaving immune system. The collected stem cells do NOT grow into new nerves or directly repair the CNS. I am afraid with all the hype surrounding stem cells sometimes the impression comes across in the media. Rather, we hope that by stopping attacks, with time and physiotherapy, nerves can recover and muscles can become stronger and less stiff. In my experience, the more advanced the EDSS the prospect for recovery is somewhat less. Patients at EDSS 6.5 are about the limit where improvement is usually seen,
Travel to and from Singapore
Carol will require a carer to assist her at all times.
Carol will travel to Singapore, stay for the whole treatment and return in Business Class to reduce infection possibilities on the flight home.
Paul will be the primary carer and will travel twice to Singapore.
Accommodation
We have booked a 1 bedroom apartment in Singapore.
This will be our home for the 3 months we will be in Singapore.