Afgelopen donderdag, 1 augustus, mijn eerste formele afspraak in het kader van de trial. Ook al zit ik in de controle groep en mag ik niet meedoen met de nieuwe pillen, toch moet ik de komende 4 weken iedere week naar het ziekenhuis voor gesprek met de hematoloog en een aantal controles bij de verpleegkundige.
Mooi op tijd worden we bij mijn nieuwe hematoloog naar binnen geroepen. Hij heeft zich gespecialiseerd in myelofibrose (MF). Fijn dat, nu het niet meer stabiel is, iemand met veel MF ervaring mijn behandelaar is geworden. Duidelijk geef ik aan dat het de laatste weken behoorlijk achteruit gaat. Ben meer vermoeid en nog minder actief. De week ervoor is er bloedgeprikt, dus dit is een mooi moment om de uitslag te bespreken. Hb. (energie) is gezakt naar 5.5 (moet normaal tussen 8,5 en 11,5 zijn). Oeps, dat zakt dus toch verder. Logisch dat ik weinig energie heb. De plaatjes zijn gestegen naar 98 (moet normaal 150-400 zijn).
Zorgwekkend is het zakken van het Hb. wel. “Dit gaat richting bloedtransfusie afhankelijkheid”. Lekker dan. We naderen het moment dat mijn lichaam dus onvoldoende bloed maakt om te leven en dan moet ik het maar van een ander krijgen. Wel fijn dat dit kan natuurlijk. Onder de 5 ben je officieel “bloedtransfusie afhankelijk”. Ik vraag hem of hij in de gaten te houdt of er zich leukemiecellen in mijn bloed bevinden. Bij 10% van de MF patienten ontstaat acute leukemie. “Uiteraard wordt dit iedere keer bij bloedafname gecontroleerd”. Jammer genoeg is de uitslag van de beenmergpunctie nog niet binnen. Daarin kunnen ze nog veel eerder zien of er zich grote problemen, zoals leukemie, aandienen. Volgende week zal die uitslag er wel zijn. Fijn dat ik nu wekelijks terug kan. Tenslotte krijg ik van hem de mogelijkheid om in te loggen op mijn persoonlijke pagina met medische gegevens van de afdeling hematologie. “Ik hou van transparantie”. Nou dat komt goed uit. Ik ook. Prachtig om te lezen wat de hematologen iedere keer over mijn bezoeken schrijven en om de labwaarden en de toekomstige afspraken te kunnen inzien.
We bespreken ook mijn gebrek aan eetlust en gewichtsafname. Dat komt voornamelijk door de grootte van mijn milt. Uit de MRI is gebleken dat mijn milt 21 cm lang is, terwijl hij normaal 12 cm is. Logisch dat ik daar last van heb. Volgende keer misschien medicijnen die mijn maag wat meer ontlasten.
Na het gesprek gaan we naar de verpleegkundige voor het vervolg van alle acties van de trial. Hele vragenlijst invullen, bloedprikken, bloeddruk, en temperatuur worden gemeten. Conform het “trial protocol” belt ze me maandag op om te vragen hoe het gaat. Als laatste lopen we via de poli naar de afdeling cardiologie voor weer een ECG. Snel en pijnloos is dat onderzoek in 5 minuten gebeurd.
Vandaag, maandag, dus gebeld door de verpleegkundige. Ik vraag naar mijn Hb. van afgelopen donderdag en die is nu gezakt naar 5.1. Dat gaat veel te snel naar beneden. Ze gaat dit met de arts bespreken zodat hij voor komende donderdag een nieuw behandelplan kan bedenken.
The exeritpse shines through. Thanks for taking the time to answer.
Si se analiza el proceso deempobrecimiento de las capas sociales mas desfavorecidas en España, nos daremos cuenta que a fin de al cabo , el elegido para realizarlos es simplemente un mandado, que resulta ser un gris registador de la propiedad , cuando este pais lo que necesitarÃa seria un gra estadista para esta epoca , pero es lo que tiene la mala suerte (que nos ganamos a pulso), siempre nos tocan los mas insulso , lo mas soso, los que menos iniciativas tienen y solo esperan la orden, sea de un banco o de un pais , que penaWell-loved.
Junior disse:Eymard e Lina, muitÃssimo obrigado pelas dicas. Já montei o roteiro à pé pelo Google Maps. Agora é aguardar e comprar um bom par de tênis. kkkkkkkabraços.
Thanks for being on point and on target!
I can’t believe you’re not playing with me–that was so helpful.
They look so pretty. I don’t get any luck to visit and see these beautiful dolls. But one of my friends recently went to that shop and she could have lots of fun experience over there. Anyway I hope I could see them maybe first week of next year.
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Agora sim é que as "façanhas" de Temer tem que aparecer ainda mais nos programas de Serra.NÃO SE FAZ ACORDO COM BANDIDO.
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Please name your baby stinky diaper face….puh-lease! And I love the design! I wish I was talented enough to understand how to change mine, but I guess ignorance is bliss right 🙂
Thanks for helping me to see things in a different light.
This is a pretty fascinating story, Mary. You never know what resonates with the public, but there is a case to be made that many of us want guidance from someone "just like us."
You put the lime in the coconut and drink the article up.
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And to think I was going to talk to someone in person about this.
Never been a Kaws fan but I think once I pay however many thousands of dollars for something I can do with it what I please. If I wanted to take it for target practice, film it, and put it online I don’t see how anywone could stop me. While I may not have purchased the right to reproduce it, I have purchased the physical item and I can display it how I see fit.
Cricri, poate as fi fost mai impacata sa stiu ca mi-a "furat-o" un barbat 🙂 Sau poate chiar asa o fi, numai ca nu l-a intalnit inca! Viata asta e atat de stranie si imprevizibila unoeri! Ma bucur ca esti norocoasa si ca ai o "cea mai buna prietena".
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דורה – הערינהגדולות בטקסס, , ידועות ב×Âווירה הקוסמופוליטית, הליברלית והשמ×Âלנית בהן. ×Âוסטין הינגנעיר ×Âוניברסיט×Âית – מוקד לפרופסורינבמדעי הרוח והחברה והתי×Âוריות המשונות שהנמלמדי×Â, בדומה לרוב הקמפוסינב×Âרה"ב. ×Âין מה להתפלנעל ×Âוסטין.
I told my grandmother how you helped. She said, “bake them a cake!”
I appreciate you taking to time to contribute That’s very helpful.
Yo, good lookin out! Gonna make it work now.
Yay! I've been searching the internet for a year trying to find laminated fabric to recover my beautiful-yet-child-stained-non-laminated-amy-butler-fabric. Seriously I am so excited!!!!
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Ah the memories we carry….Knots Landing was awesome.If you were at J. Brant, I can almost bet which OB you had on call, there was one very special OB that I and a few of my friends had who was NOT a nice man at all. The nurses apologized to me for his complete lack of bedside manner.Happy Birthday Christopher!
Vavaly, ma bucur ca ti-a placut interviul si ca ai remarcat cat curaj si ambitie are Anca! Si ai dreptate, e o munca incredibila in domeniul asta, mai ales ca bijuteriile ei sunt foarte "lucrate", nu sunt doar trei margele insirate pe o ata – nu ca n-ar fi frumoase si alea :)Te pup!
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Cuma nak pertikaikan masaalah kupon parking. Elok ditukar semula kpd cara lama. Pengguna tidak perlu terkejar nak tambah kupon parking klau masa dah tamat. Lagi satu tak perlu lah pengguna nak tercari2 tempat nak beli kupon parking. Dalam masa nak mencari tu dah KENA SAMAN.
Con facilissimo da usare intendi anche il tener la mano ferma mentre si filma? scherzi a parte ottima scelta… ne parlan parecchio bene e son mooolto tentato anche io
Heck yeah bay-bee keep them coming!
This post has helped me think things through
I could watch Schindler’s List and still be happy after reading this.
I have to say, less mud would be great. Life is busy enough, without washing and then bagging veg to put it in the fridge. Love the quality, though – it’s just about worth the mud (which I do hate)
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Cada año me emociona el recuerdo de esas valientes mujeres.No las olvidaremos y haremos que no las olviden los demás, al menos por mi parte.Carmen, tu madre, forma parte de mi memoria personal, ya es como si fuera de mi familia.Abrazos apretados.
Great insight! That’s the answer we’ve been looking for.
I ordered the Black Ops game skin well in advance as a Christmas present. Since I have still not received it, I’m not quite sure how to rate it. If it looks like it is pictured, it should be great. I must say, I have contacted the seller and was assured another one was being shipped at no further cost to me, but to date (1/14/11) I have not yet received it.
Well I guess I don’t have to spend the weekend figuring this one out!
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Great lesson Pete! I took my oldest camping this weekend even with his mother saying it would be to cold. Guess what it was cold, but that just made my son and I snuggle closer. Great night never to be forgotten.Prayers with youBen
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K. Lalitha Reddyon Hey Anil, this is Lalitha from Ichapuram, Srikalkulam, A.P. I am very Pleasure to see a person from our Srikakulam District. Andthat to you are very special person comparing with others. So happy …………..I wish all the luck. and success will come to you || Be Happy and be makes happy others ||
Thinking like that shows an expert at work
Hey,feiert schön!!!!!Wir sind zuhause und werden Bleigiessen!!!!!!Und es gibt Fondue chinoise!!!Mhhhh fein!!!Im neuen Jahr wünsche ich dir nur das allerbeste!!!Und ich wünsche mir einen Kaffe mit dir zu trinken..Es gibt da ja ein soooo tolles Geschäft zmitts in Pr…eln ;-))))Ok?????XOXO GabiB.
Wow! Great thinking! JK
It’s great to find someone so on the ball
Time to face the music armed with this great information.
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You can always tell an expert! Thanks for contributing.
AKAIK you’ve got the answer in one!
Geez, that’s unbelievable. Kudos and such.
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Hi!Mir gefällt eure Küchenrückwand wirklich super!Was habt ihr als Untergrund verwendet? Habt ihr die Folie direkt auf die Wand geklebt oder auf eine Platte?Liebe Grüße, Marco
I am offering prayers for Reverend Mister Harold Hughesdon,also for all Priests that have touched our lives, may they rest in peace and intercede for us on earth.Please pray for our pastor who vacillates between enthusiasm for saying the TLM and lethargy of the same,and for my husband that he can eventually not need a catheter.
I've never had mango jam before, is it similar to mango chutney? I'm not sure if there would be much difference between the two..or if it's the same thing just a different name? :)I'm also taking part in the Hearth & Soul hop and that's how I found your blog.
Arg, but that sounds like a mighty fine Christmas gift. My kids are now both officially teenagers, but you recommended up to 92, so I’m in! Assuming I can stomach ONE MORE trip to the stores.
No question this is the place to get this info, thanks y’all.
Corn subsidies have made a lot of things sweeter when they don’t need to be. High Fructose Corn Syrup is seemingly in EVERYTHING. It’s also less sweet, so more goes in. Great.
uite si poza aceea din care nu se intelegea mare lucru si in care noi credeam ca ai o chestie de aceea de dormit ( pe ochi).. foarte frumos.. asa ceva nu am vazut pana acum , frumos !
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Odd verkar vara en riktigt torr typ. Och vad förväntar läsare sig, att han ska gÃ¥ ut och säga: “Javisst, jag var med henne medan jag var med bella.” Yea right.
Superb information here, ol’e chap; keep burning the midnight oil.
Oh my I am happy to try your recommendation!!! Can’t wait!!! I have been in LOVE with BsAs since 1999 and though I always stayed at the Park Hyatt. The most AMAZING hotel period. And I love all the brick and mortar restaurants, the “closed door” concept has blown me away! I’m off to Jamaica to research new dining options. Thank you for you informative knowledge!! Brooks Sent via BlackBerry by AT&T
jejeje I think it was very funny your description of us, the expat bloggers.It immediately made me start thinking in which category my blog is. But then I stop thinking too much about it, because I believe the important think it is to have a passion in life and write about it. It doesn’t matter if you write in a white, black or grey way about it. One last thing could excuse my ignorance and please explain me a little bit better the third type, because I didn’t understand it so well? Thanks.
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Eine wunderschöne Idee, ich kann solche Schachteln auch nie wegwerfen, Frau könnte sie ja noch gebrauchen *hihi*Ich wünsche euch ein wunderschönes Wochenende und hüpfe mal weiter*knuddels* Sonja xx
Hey, good to find someone who agrees with me. GMTA.
zgroza aby niesÅ‚uszny czÅ‚owiek kierowaÅ‚ taka instytucjÄ…, a przy okazji i KaczyÅ„skiemu mozna dowalić – Polak nie może przeciez kierować niczym w Polsce, bo jeszcze przypomni innym ich prawa ???
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Great article but it didn’t have everything-I didn’t find the kitchen sink!
J’ai revu ce champion du monde dans la rue, près de l’université. Il portait des cannes de snooker dans leurs étuis et il allait sans doute gagner deux ou trois ronds pour financer sa retraite. Personne ne le reconnaissait dans la rue, lui qui a fait les beaux jours de ce sport à la télé. C’est grâce à lui, paraît-il, que le snooker est devenu un sport télévisé.
No, you cannot doubt the authenticity of the child. If the will is fake, then, it is a perfect one. And by the way, Bianca’s display of ignorance of the love child is fake. She knew about it, and that is way the name was included.
Good news for all developers in Google App Engine + Apps Ecosystem. We have a cloud computing service for lawyers in Spain (nubbius.com), and we have to make additional developments to colply with Spanish Protection Act
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Yo, good lookin out! Gonna make it work now.
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Tab’s is in luck- we always have plenty of cans of his favorite gravy around here.- I love how he looks when he is getting dunked into the first box, hilarous.It seems that Tab is already working on a career for when his kitty model days slow down.
Tu viste o jogo? Tens visto o Barça nestes últimos anos? Tens visto o que tem feito aos adversários? Viste como é que o Inter e o Chelsea o conseguiram eliminar (e mesmo assim com uma grande dose de sorte)? Achas mesmo que eles são do nosso "campeonato"?Eu percebo que tu gostes de ser do contra, mas este teu post roça um pouco a tonteria (para não dizer estupidez), desculpa lá que te diga.
That kind of thinking shows you’re an expert
I don't know … my kids swim on a club swim team. It is very much an individual sport with the team/friends aspect. Girl child is taking up junior roller derby too. It is a team sport and a little quirky and lots of fun.
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Hey,das erste Bild ist richÂtig gut geworÂden! Kannste ne Postkarte von machen lasÂsen ;). Das blaue ist auch recht gut aber leiÂder erkennt man da die Häuser nicht so drauf dann wärs perÂfekt geworÂden, aber das liegt ja auch nen bischen dadran das die Häuser leiÂder nicht in der Mitter steÂhen. Die neue Kamera lohnt sich ja lg
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Hi there just wanted to give you a quick heads up and let you know a few of the images aren’t loading correctly. I’m not sure why but I think its a linking issue. I’ve tried it in two different internet browsers and both show the same results.
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Hi Greg,the redirect option is disabled for mobile devices, because the html5 video tags are used. We will debug this feature for normal browsers, thank you for pointing this out.Zdenka
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game (in my home country of Canada no less!)…here goes:CJ Spiller has more receiving yards than Marshawn Lynch does rushing yards.VA:F [1.9.21_1169](from 0 votes)
michaud dit :Belle journée pour ce boot camp qui était une découverte pour nos enfants .Il ont beaucoup aimé .Rémi a su créer une cohésion dans le groupe ce qui a donné envie de profiter à fond de ce moment en famille! le plan sport et amusement pour les enfants c’est génial !à refaire tres tres vite.
Spinoneone wrote:We may be anti-sharia and anti-Islam, but that in no way makes us racists. If so, then you are doomed to failure. The single most integral part of the big picture here is BLOOD. The question of whether European blood will persist on European soil or whether it will be overwhelmed and eventually extinguished, is what fundamentally animates most who think in the “anti-Jihad” direction. If you get so panicky when the word ‘race’ comes up, then you are lost to the fight. The same applies if you genuinely “don’t care”.
Alakazaam-information found, problem solved, thanks!
Thanks for spending time on the computer (writing) so others don’t have to.
Not: aquilo para o qual precisava de muitÃssimo dinheiro não era vigarice. Era uma defesa contra ela.Mas vigarizei em beleza. E garanto-lhe: devo ter nascido para rica que ninguém notou nada durante anos.
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I nasuwajÄ… sie tylko pytania : Jak dÅ‚ugo jeszcze tak wielu Polaków bÄ™dzie pozwalaÅ‚o robić z siebie idiotów ?Jak dÅ‚ugo bÄ™dÄ… zachwyceni ta “fajnÄ… PolskÄ…” ?Jak dÅ‚ugo jeszcze…?Pozdrawiam bardzo serdecznie
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An answer from an expert! Thanks for contributing.
Back in school, I’m doing so much learning.
The last time we (inadvertently) tried sequestering carbon we turned a fecund and biologically diverse ecosystem into the arctic tundra as well as possibly exacerbating the last ice age. Timing is everything!
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Hola Marina!!!!!Pues sÃ, un Zara y además ESPECTACULAR…. en serio, la más bonita de toooooodas las tiendas que he visto de Zara, la que tiene en Tokio en la zona de Ginza también es bonita, pero es más como el resto, pero ésta nueva es… Me alegra que te haya gustado Un millón de gracias por seguirme!!!!!
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#1Fcuk that guy whining about his 10k in taxes. He went out on disability at the age of 40 and we are stuck paying for his health benefits and his disability pension for the rest of his life. He’s one of the reasons our prop taxes are so high in NJ.He also lives in Jackson. According to the tax records and zillow he’s living on 17 acres, and his wife owns another property. And if he is so disabled he can’t be a cop, yet he can take mowers and other power tools on and off a trailer all day. Cry me a river.
Stellar work there everyone. I’ll keep on reading.
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