During HSCT treatment

The HSCT treatment is a serious treatment of 4 weeks. First they check whether you have any underlying infections or diseases. After all, during the treatment your immune system goes ‘down’ so inflammation or tumors have ‘free play’. An x-ray of the lungs is created and you get a lung function test, ECG, four MRI’s, a blood test etc. If there is no underlying disease are and you are fit enough you will get the first chemotherapy. This is to let your immune system get ‘accustomed’ with chemotherapy (conditioning). After that the production of stem cells by your bone marrow is stimulated. A few days later these stem cells are filtered from your blood (through a cannula inserted under anesthesia of 7 inches in the chest cavity). Then you get chemotherapy for 2 days. Your stem cells are then send back through the cannula. In the next 7-10 days you have no immune system and you should take stringent precautions to avoid infection. Consider: 10 days ‘quarantine’ in your daily disinfected apartment, many anti-virals, only eat freeze-dried food, washing hands very often and constantly having to wear a face mask… Finally you get a last chemotherapy treatment to disable all possibly remaining ‘wrong’ immune cells. If there are no complications and your immune system is secure enough you can go home. While traveling you can not eat airplane food, you have to wear a mask and the armrests of the chair and the table must be disinfected etc.

The first year after treatment

Also in the first year after returning home there are several precautionary measures: no dining (restaurant kitchens are often not hygienic), avoid locations with more than a handful of people (inside), do not come near sick people and only eat cooked food (e.g. no lettuce), wash your hands very often, changing the bed linen every day, weekly blood tests etc. Also during the first year there can be side effects such as insomnia, joint problems, depression, muscle pain, hair loss and a dry skin.

People who have done the treatment often find the recovery more difficult than the treatment itself …

In the first half you need to take multiple anti-viral drugs every day. You also need every other month (a total of 6 times) to be given an infusion, a sort of mild chemotherapy. The problem is that these infusions are not offered to MS patients in The Netherlands (but they are to leukemia patients for example). One must go abroad (England, Germany) and have to pay it for yourself (1500 euros per infusion).

The second year after treatment

After two years you can only then definitively say whether the treatment has stopped the MS. In the first year the ups and downs in terms of fatigue and strength will be very strong. If you want you also have to re-do all vaccinations (MMR, DTP, hepatitis etc) at their own expense.

Risks

Yes, there are risks. Of the patients who have had a HSCT only a small number of the MS patients had complications, e.g. a collapsed lung, pneumonia (due to the insertion of the 7 inch cannula into the chest cavity), dehydration, severe constipation, etc. The risk of dying from a stem cell transplantation is 0.5%. This is not greater than the risk of a fatal accident like when you’re driving a car…