The goal of HSCT

The goal of HSCT is to stop the increasing neurological damage. A recent analysis of studies show that 67% of patients who have had HSCT had no evidence of disease activity after 5 years. It is seen as a more effective way than through inhibition drugs (source: 32nd Annual International Congress of ECTRIMS Neurologists, September 2016). The best results are achieved with people that have the aggressive, episodic type of MS (which Martine does not have).

It’s possible that there will be some recovery of the insulation around the nerves, but this is not guaranteed. Sometimes there is permanent damage that can not be restored. The chance of improvement with the type of MS that Martine has (secondary progressive) is small. After two years it can be determined definitely whether the MS has been stopped.

Why a treatment in Mexico?

There are many hematopoietic stem cell transplantations (HSCT) performed in The Netherlands. These will only be offered to people diagnosed with leukemia, not with MS. Neurologists in the Netherlands take a cautious approach and closely monitor what results are achieved abroad with HSCT for MS.

In other hospitals and medical centers around the world like in Singapore, Moscow, Chicago, Heidelberg (Germany) and Uppsala (Sweden), HSCT’s are performed on MS patients. These centers have different selection criteria for patients. Martine is due to her form of MS (secondary progressive) and her degree of disability no longer eligible for treatment at these centers.

She can still be treated in Mexico. The current waiting list is about 7 months. Martine requested an emergency status in September and received it. On October 15th, the joyous mail came: she can start on December 5th with the stem cell transplantation. With the money donated by then, she could pay the deposit and the air plane tickets.

There have been about 2500 people with MS that have done the HSCT treatment worldwide. The Hematology Clinic “Clinica Ruiz ‘in Mexico (Puebla and Monterrey) has treated approximately 200 people with MS.

The treatment in Mexico lasts four weeks. Her boyfriend will be her caregiver. Her parents will care for her daughters at her home. Martine and her boyfriend will spend four weeks in an apartment near the private hospital. They are brought to the hospital by volunteers, every day.

mexican-method_v10-1200px

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