The hematologist

Adrienne and I had an hour long meeting with the hematologist yesterday. The rest of the treatment is now more or less clear. I drew the schedule below, but as you can see there are still a lot of ± signs. Many durations are estimates, they depend on the speed of recovery, which varies between patients and can’t be predicted. The hematologist made clear that the chemo’s I will receive in the VUmc, make the ones I already had in the Jeroen Bosch hospital feel like a walk in the park. You can imagine that I am not looking forward to those coming weeks in the hospital. The exact date when it will start is not yet known. In the week of the 24th they will call me one day in advance to tell me that treatment will start the next day.

I hadn’t mentioned it before on the blog, but aHSCT (autologous hematopoietic stem cell therapy) can be a very effective treatment for MS. I had been studying this treatment long before this whole cancer story started. The results appear to be remarkable in most cases, but there are some serious possible side effects as well that have to be considered. This treatment is currently not offered in The Netherlands for MS, so as a patient who wants to get this treatment, you would have to go to a foreign country with a lot of money. You can imagine that since I knew aHSCT was going to be part of my therapy plan, my question has been whether the treatment had to be adapted such that it would be most effective for the lymphoma but could also treat MS. We discussed this yesterday with the hematologist. In the case of MS, the treatment is to eradicate the immune system before building it up again with the help of your own stem cells. This establishes a ‘reset’ of the immune system that in most cases causes a stop in the progression of the autoimmune disease. This reset is partly done by using chemo agents that kill lymphocytes specifically, their suppression of these lymphocytes lasts for months, which is no problem in a healthy person, or a person with an autoimmune disease. However, to fight cancer you need your immune system, as it is essential in destroying the cancerous cells. Therefore the specialists at the VUmc hypothesize that long term inhibition of the immune system could have a serious adverse effect in my specific case. Their reasoning sounds logical. Hopefully, the altered schema is still able to induce an “immune system reset” that is beneficial for MS. As you can imagine, there is no scientific evidence that this would or would not be the case. So let’s hope that in the end, this intensive treatment will prove to be super effective for both diseases.


Let’s hope!

It’s a pity, that they still cannot say when they will start:( I hope you will still manage to schedule kid’s vacation

Hey Bram, thank you for sharing your journey. I wish you all the strength it needs to get you through these coming weeks. My thoughts are with you and your family.

Thanks Rainer, and thank you for leaving a note!

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