Nieuw medicijn!

Geplaatst op door Dolf van den BergCategorieën:Blog Dolf

Het is al vaker in dit blog geschreven. Ik heb een heel zeldzame vorm van bloedkanker, myelofibrose (MF). Deze beenmergziekte komt maar voor bij 1 op de 100.000 inwoners. Een voorbeeld werkt het gemakkelijkst. In mijn regio ben ik statistisch de enige patient in de plaatsen Woerden, Montfoort, IJsselstein, Oudewater, Kamerik, Harmelen en Linschoten.
Dit is in ieder geval al de reden dat ik gekozen heb om me te laten behandelen in een academisch ziekenhuis. Daar krijgen ze in ieder geval wat meer MF patiënten dan in een streekziekenhuis, en daar beschikken ze ook over de beste mogelijkheden.
Groot nadeel van een zeldzame ziekte is dat dit voor medicijnontwikkelaars (pharmaceuten) maar een hele kleine markt is waar het geld op moet worden verdiend. Met andere woorden, op een kleine patiëntengroep moeten onderzoek en trial worden terugverdiend voor men er zelf aan kan gaan verdienen. En dat maakt specifieke MF medicijnen duur. Heel duur.

Er is nog maar 1 middel goed gekeurd voor het bestrijden van de symptomen van MF zoals ik die ook heb. Je wordt van dit middel dus niet beter (het beenmerg herstelt niet). Het maakt wel o.a. de milt kleiner en de vermoeidheid minder. De kwaliteit van leven neemt dus toe.
Dit middel, Ruxolitinib genaamd (ook wel Jakavi genoemd), is 3 jaar geleden in Amerika op de markt gekomen en geeft goede resultaten. Het is dus geen trial meer!
In Nederland is het middel de afgelopen jaren via de hematologen voorgeschreven aan patiënten die het nodig hadden. Op die manier kon iedereen kennis maken met het middel, maar omdat het niet in het basispakket zit, stelde de leverancier het gratis beschikbaar. Natuurlijk om iedereen er mee kennis te laten maken, maar uiteraard in afwachting tot het in het basispakket zou komen. 

HOE NU VERDER?
Na lang onderzoek en dankzij inspanningen van o.a. de leverancier en de MPN stichting is het middel vanaf 1 februari voor minimaal 1 jaar in het basispakket opgenomen voor patiënten met MF die in de hoogste en een na hoogste categorie MF vallen. Mijn hematoloog was hiervan snel op de hoogte en heeft het voorgeschreven en ik ben er afgelopen dinsdag mee begonnen. Zowel de hematoloog als wij vinden het heel spannend om te zien of dit wel werkt, in tegenstelling tot het trial medicijn dat dus duidelijk onvoldoende bij mij deed. Dit is de laatste kans om mijn ziekte met medicijnen draaglijk te maken. Werkt het niet dan zal er hoogstwaarschijnlijk wel een stamceltransplantatie plaats moeten vinden.
Tegelijk ben ik gestopt met de lichte chemo omdat Jakavi de verschillende bloedwaardes (dus ook mijn leuko’s die veel te hoog zijn) zal laten zakken. De prednison is afgebouwd tot 1x10mg. Over 2 weken terug voor controle. 


Blijf lezen

Jan 21, 2014Goed nieuws mensen!Feb 17, 2014Werkt het nieuwe medicijn?

380 gedachten over “Nieuw medicijn!”

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  19. My Favorite Evil Organization is the HellFire Club from the Uncanny X-Men. They unleashed the Dark Phoenix as their Black Queen. The new Hellfire with the kids is just wrong.

  20. If he wasn’t an anti-semite then why did he help the Nazis flee the country safely after the war? Why did him and his clergy make so many trips to Germany and hang out with? Hitler and the Nazis? I’ll tell you why. Because they advocated Nazi behavior and there are photographs and written evidence to support that. Read a book…

  25. Sounds like a great book Candace. There should be more books about normal girls and normal guys. The boyfriends don't all have to be bad boys or super jocks. Normal can be interesting, too, because what is normal?? Everyone has something interesting about them. I gotta get this one.Heather

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  111. Y gracias a la maravillosa actuación de la policía nazional, el 26 también hubo una masiva concentración en Neptuno, y el sábado 29 habrá otra, que además será secundada en Portugal y Grecia. Y veremos si en más países.Cuanta más leña nos den, más volveremos delante de sus narices. No tenemos miedo. Y somos más. Y tenemos razón.

  113. My view, Aletha, is that instead of framing the issue as religion versus access to health care, it should be framed as two opposing religious and ethical views about human sexuality and the status of women in society. And in a pluralistic society, the solution to that is never to allow one religious point of view override another (which the Bishops are attempting to do). Then you can bring in the health care access issue in that without access, all the rights in the world mean nothing.

  117. Ora che mi ci fate pensare,un’esule istriana (o dalmata, boh) è stata la seconda per ora “secondunica” persona e da cui mi è capitato di sentire dal vivo un vero e inequivocabile commento antisemita.Per non farsi mancare niente, se l’è presa con i giovani “comunisti” (che poi, nel suo iscorso, erano quelli che andavano a un popolare festival di cinema asiatico che si teneva nella città in cui viveva) e con calciatore serbo suo vicino di casa…mmm, sui nazionalismi direi che la penso come Mirkhond

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  131. Guillaume je suis admirative de ta percée dans ce monde « Pro », on est fier de participer un peu par procuration. Je pense que ce n’est qu’un début… Encore BravoVu l’état de Votrefils tu penses avoir l’occase de lui demander si il pense gagner la Coupe Davis et si ça va nous faire rire?

  132. Guess “the source” never saw I Know Who Killed Me (or Just My Luck). Winning dual Razzies is pretty impressive… I have always thought LL was a good actress (aside from those), but there was no way her voice would let her get away with playing Elizabeth Taylor (and the script did suck).

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  135. It is ironic that pseudoscientists are forced to use the terminology and concepts (however distorted) of real scientists in a parasitic way… they can't create an intellectual edifice on their own, they have to steal bits of what others have made to build their little straw huts. (Where's the Big Bad Wolf when we need him?)They should have to produce real predictions and real results before anyone pays attention to them… but that's not the point, is it? What they are paid to produce is propaganda.

  136. While we are doing our best to fight the gov’t, they have unlimited resources. (YOUR TAX DOLLARS,) We do not. I hope that Kevin can keep up the battle for awhile, I pray that it doesn’t bankrupt the farm, like it did for my uncle, Tom Johnson, I wish that I had the funds to help, but, unfortunately, I do not.

  137. Wikipedia notes: "Vonn was born in Saint Paul, Minnesota, and was raised in Apple Valley, MN. She was on skis at age 2 before moving into Erich Sailer's renowned development program at Buck Hillin the next city door to Apple Valley, which also produced slalom racer Kristina Koznick."Any relation?

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  149. Our family photo shoot is this Thursday and I was literally just thinking to myself, “What in the world should we wear?” Then I got on twitter and saw that you had posted about finding an outfit you love. PERFECT timing!!! Your pictures are so cute and I feel inspired about taking our pictures now! Thanks for the tips.

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