Nieuw medicijn!

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. 

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. 

380 gedachten over “Nieuw medicijn!

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  4. 在Facebook討論(曾榮光﹕香港國民教育課程的偏差與扭曲)有網民不明白:為何作者認為,就是對國民身分的認同基礎作了錯誤的界定。如"港國民身分認同建基在一種「同根同心」的所謂原生(primordial)、本質(essential)的基礎上。我的回答:他的立論基於多民族不同血緣如新加坡和美國。所以和我們傳統學的「同根同心」有不同。但對於小學生來說,傳統觀念是比較容易理解。他所說的,我相信在研究院用比較合適的。作者主要批評國民教育的定位問題及範圍不夠廣(只適用於懂漢語的香港公民)。他是理性討論,文章沒有提出要撤回國民教育科。其實很多項目可以透過溝通來修改,及懂漢語的在港中國公民首先試行;也可以討論建立有香港特色的國民教育。

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  9. These wackos need to shut the hell up!!!! I am sick and tired of all the bullshit about the world ended. If it is NOBODY knows when…not even Jesus himself knows the date. Seriously guy SHUT UP or do us all a favor and YOU just GO AWAY!!! Crawl back into the shit hole you came out of and keep your bull shit opinions to yourself!!! enough is enough already!!!!!!!

  10. 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.

  11. 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…

  12. 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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  17. Es apasionante, Tomeu y yo no podemos tener puntos de vista más opuestos. A mi En busca de la felicidad me gustó y, aunque no he visto Soy Leyenda, por lo que me ha contado Seri y lo que contáis vosotros, no me corre demasiada prisa verla.Pues eso, difiero totalmente con su opinión, y aún así disfruto escuchándoos. Es la grandeza de… nosequé, la grandeza de algo.

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  19. Hallo Roswitha,die Stulpen gefallen mir auch sehr gut, sicher werde ich mir auch diesen Herbst oder Winter ein paar stricken.Oder Babysöckchen? Ich übe schon, denn nächsten Frühling werde ich Oma und die Bestellungen trudeln schon ein.Sonnige Oktobergrüsse aus Weinfranken von Sigrid

  20. For those of you concerned about anchovy paste you’ll just have to trust me on this one. Anchovies are seriously the secret ingredient that you can live without when it comes to caesar dressing. You can’t tell they’re there but if they’re not you can tell something’s wrong.

  21. Allahım,Dava sürecinde haklı olan bütün kardeÅŸlerimizi alınlarının akıyla temize çıkar. Maddi ve manevi bir sıkıntıya maruz kalmaksızın davalarından beraat ettir …Amin. Amin . Amin.

  22. Sultan,You got it covered pretty well. For all those very realistic reasons, I do not appreciate advocates of even more division, while we, in Israel, are practically in a state of war. Specifically there's a guy by the name of Mike something who wanders online preaching about this 'solution'.Understandably, the settlers (I'm using that term as a matter of convenience, not because I have any doubt about Jewish rights to the land) feel a lot of animosity towards the government, but so are people like me.In my humble opinion, we stand a better chance not turning on each other, especially when the boat is leaking.

  23. To those of you who complained about those racist comments by DeniseBarber, we owe you our thanks.We do not allow, elicit or accept racist comments on our blog. Those have been deleted, spammed; and DeniseBarber or any alias she may use from the same IP address will be blocked. We merely did not see them when they were initially posted.We will be more vigilant. We appreciate your alerting us to them.All our best,The Editors

  24. Hej alla!Hur kan man tycka att nÃ¥gon som skriver om magsjuka, trotsÃ¥lder och pepparkakshus har blivit till sig över sitt kändisskap! Jag tycker Petra stÃ¥r stadigt pÃ¥ jorden, sen om hon gör det i ett par Hunterstövlar och en odd molly jacka…spelar det nÃ¥n roll? I like you!!:)Lots of love, Trinna

  25. This is such a gorgeous and fun packed post all at the same time! I'm on my laptop and a little confused as to why the music won't play. Hope my lap top is not broken. I will have to revisit from my big computer to get the full effect. Hope your weekend was awesome! xo

  26. Kymmee JWTG Diamond! What more is there to say Diamond’s Dad say it so well! Stop discriminating against the Pit Bull!!!!! Diamond, The Duo and I want you to know that we support you and all Pitties in your fight for fair treatment! BTW, my Duo are a pair of Boston Terriers!

  27. TICO BAUHAUS disse:MOSTRANDO A GERINGONÇA!Interessante a matéria. As pessoas não tem ideia de como é “duro” esse posto de trabalho. Um abraço para o seu João Conceição da Silva, que dos altos dos seus 63 anos, tem muita energia pra controlar essa geringonça.Particularmente, não tinha ideia do controle do fluxo e refluxo das água do rio Amazonas.Parabens pela foto.

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  30. Yeah, well you can see how NaPo might not have wanted to lede with “139 biz guys don’t think about the environment too much” “leading scientists now have a consensus that the Earth is round. I wonder if anyone would be ready to suggest that the FlatEarthers had it right in the first place?”Killer.

  31. 106That was her polite way of telling you you were making an uncomfortable environment. She was providing you with a perfectly suitable and comfortable solution. But by all means, keep living in your self-absorbed bubble.

  32. Luh, adorei o post!É isso mesmo, às vezes ficamos tão neuradas que esquecemos de viver, principalmente. Me lembro que quando eu tinha uns 17 anos, não vestia biquini de maneira alguma porque tinha estria. E eu nem tinha celulite, era um palito! Me lembro hoje de quanta diversão perdi na minha festa de formatura, em que fomos para um sítio passar o final de semana. Chato demais isso.Ainda faço dieta, fico de olho na balança mas não mais assim. Beijos!!!

  33. maysa,tem lugar pra todo mundo e mais um pouco e mais ainda na falta as pessoas perceberem que DIFERENCIAÇÃO é a palavra-chave.copiar o estilo-idéias dos outros não tem nada a ver…o legal é ser voce mesmo!!!e concordo 100% que se a pessoa nao curte o blog ou a blogueira, nao deveria perder tempo lendo! acho meio sádico detestar alguem e ficar pentelhando a pessoa, pra queeee??beijo e obrigada pelas palavras!

  34. 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.

  35. 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.

  36. 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

  37. A few Dutch friends tried my recipe and loved it! They thought it was pretty authentic, so I’m sure you’ll love it. A little piece of Winkel into your own home! Make sure to come back and tell me how it turned out!

  38. But there are some women to whom it absolutely DOES matter. I happen to loathe golf. Yet there are many avid female players. That these women may only play in such a “legendary” venue as guests, or worse, spouses, is abhorrent in this country. This is not Saudi Arabia and women are NOT second class citizens. Nor should they be treated as such anywhere, public or private.

  39. Boy, is this true! I love how honest you are about the process. It is such a love/hate relationship. And writing a book IS a relationship–with its glorious parts, its tedious parts, its hateful parts, its fun parts… Thanks for being so transparent.

  40. 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?

  41. 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).

  42. You can’t look at Whitney, the woman that I saw standing proud today, and tell me there isn’t a God who is real and omnipotent.Whitney is one of the few REAL artists left.There is nothing illuminati about Whitney (anymore).

  43. 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.

  44. 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.

  45. 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?

  46. I visite: #5 One Sister’s Rant, I love her writing style, her gorgeous pup, and the fact she rescued a leather chair which share the same name as my dad! #30 The Hubby Diaries, A well written and funny post about guys and looking for stuff. Can’t wait to check out more of this blog!

  47. The last minute goals have been incredibly great and gut wrenching bad depending who you are rooting for.Just ignore the guys trying to get rid of the playoffs. They ignore the facts and try to pretend noone cares or that they have not been very fun.The playoffs will be expanded not contracted…too much money being made not to do so.

  48. That Quote Book looks awesome! I just wish that more people did things like that because memories are too easily lost.Back when I was in middle school, my family moved to a different state. My friends made me a photo album with tons of quotes and pictures as a gift, and I was truly touched. The album meant a lot to me as first, but time dilutes memories, and the album is a distant memory as we have lost touch over the years. Reading this post made me want to look at it one more time.

  49. 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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