Wat een raar bloed. Te laag, te hoog.

Het gaat slechter.
En we zijn weer ruim 4 weken verder waarin er natuurlijk genoeg is gebeurd. In 3 uurtjes zijn de vorige keer de 2 zakjes bloed ingelopen en mocht ik weer naar huis. Grote vraag is natuurlijk hoelang het duurt tot mijn Hb. weer onder de 5 is gezakt. We zien het wel.

Na een periode waarin het redelijk is gegaan, gaat het sinds een paar weken duidelijk minder. In een paar maanden ben ik ook 7kg. lichter geworden, alleen maar omdat ik geen eetlust heb en minder eet. De grote milt drukt op mijn maag en ik heb altijd een “vol” gevoel. Weinig energie heb ik al, maar ik moet natuurlijk oppassen dat te weinig eten dit versterkt. Al een paar weken sleep ik me van bank naar bed en andersom. Vorige week donderdag maar voor een extra boedcontrole naar het UMCU gegaan. Hb. 5.7! Wow, niet veel gezakt in de 3 weken na de bloedtransfusie! Aan de andere kant hat ik dat niet gedacht. Tweede keer dat mijn bloedwaarden afwijken van hoe ik mij voel.
Heel fijn is dat ik nog met mijn oude collega’s in Leiden wat heb gedronken, en dat ik heb bijgepraat met een ex-collega. Kost me wel heel veel moeite, maar is het toch waard. Leuk om even over de ICT en de zorg te praten. Mijn wereldje is inmiddels wel klein aan het worden….. 

klik voor vergroting
MRI.
Vorige week vrijdag in het kader van de pacritinib trial waar ik bijna 12 weken mee bezig ben, weer een MRI gekregen. Dit keer wist ik wat me te wachten stond en had ik me op de claustrofobie gevoelens voorbereid. Heb liggen denken aan de zee, duinen, duinpannen, zonnetje en een lekker windje. Ging een stuk beter dan de vorige keer en na 40 minuten was het voorbij.

UITSLAG MRI en wat nu?
Best spannend welke uitslag er zal zijn want zoals geschreven zijn mijn milt/buikklachten, net als de vermoeidheid, fors toegenomen. Graag zo snel mogelijk over op de trial medicijnen! Maar ja, dan moet mijn milt fors gegroeid zijn, of ik moet nog 12 weken wachten tot het einde van de trial. Donderdag de 24e oktober uitslag MRI en gesprek hematoloog. Mijn Hb. is zelfs gestegen ten op zichte van de week ervoor : 5.9 (moet tussen 8.5 en 11.5 zitten). Plaatjes redelijk stabiel 112 (moet tussen 150-400 zijn), maar probleem wordt nu toch echt de hoogte van de witte bloedlichaampjes. Twee jaar lang zaten ze met 2-2,5 ver onder het minimum van 4, en nu zijn ze in 1,5 maand gestegen naar 13,2 (maximum normaal is 10).  Ai, dat is raar en kan best een deel van de klachten veroorzaken. Beenmerg van mij doet raar! Eerst te weinig nu teveel witte. 
Omdat ik me behoorlijk beroerd voel, en best hard achteruit ga besluiten we om te kijken of ik me met een bepaald medicijn beter ga voelen.  (niet die van de trial, dat mag niet).
Om de overproductie van het beenmerg, en dan met name de witte bloedlichaampjes, af te remmen wordt er gekozen voor een lichte chemo in de vorm van pillen. Dagelijks 1 pil van 500 mg hydrea. Pillen direct meegenomen vanuit de poliklinische apotheek in het ziekenhuis en donderdag mee begonnen. Gezien het soort medicijn, komende donderdag terug voor bloedmeting en controle. 
En dan mijn milt. Die is maar 2cm gegroeid in 12 weken en is nu 23 cm ipv 12cm. De groei is niet genoeg om tussentijds over te mogen stappen naar de pacritinib uit de trial. Dat wordt op zijn vroegst dus over 12 weken.

Frans Pross.
AfbeeldingTenslotte nog een vervelend bericht dat ik met jullie wil delen. Er is een stichting voor mensen met een zeldzame beenmergziekte, de MPN-stichting. De voorzitter daarvan (Frans Pross), die ik al kende, nam 4 weken geleden contact met me op omdat er vele parallellen waren tussen ons. Ook hij heeft myelofibrose, is ook sinds de zomer bloedtransfusie afhankelijk, en doet ook mee in de controle groep van de trial met pacritinib. Door wat verplichtingen van zijn kant lukte het niet om een afspraak te maken. Vorige week stuurde ik een mail en kreeg van zijn vrouw een uitgebreid antwoord terug dat Frans was opgenomen met forse complicaties in het ziekenhuis. Twee dagen later weer een mail. Frans is overleden…..Zo oneerlijk.
Dat hakt er bij de stichting en bij ons thuis goed in. Niet alleen omdat we vele parallellen hadden, maar ook omdat hij een fantastische mens en een goede voorzitter was.  Frans, het ga je goed!  We zullen je missen als mens en in de belangenbehartiging voor mensen met een zeldzame beenmergziekte.


160 gedachten over “Wat een raar bloed. Te laag, te hoog.

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  23. das sagst du immer.voll langweilig das spiel gerade. eigentlich besteht es aber nur aus schnee. ich frage mich ob das durch die kamera so schlimm ausssieht oder ob das wirklich so heftig ist. wenn das in echt so ist, dann sehen die spieler aufgrund des schnees ja gar nichts.und das wiederum ist dann ein ganz klarer vorteil für den sc freiburg. wenn die spieler von leverkusen nichts sehen.

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  27. I appreciate what Wounded Warrior stands/started for but not how they operate. Did you know they do not and will not help Vietnam Vets? Only vets from the “newer wars. Once again Viet vets are left hanging and don’t count. Did you know that their admin expenses are over $.66 on the dollar in admin costs per Charity Navigator and only a 2 star rating on “Financial”? Not the best use for your contributions

  28. Lauri ei nyt ymmärtänyt (osin koska mulla tuli typo-virhe, piti olla: teistiset evolutionistit)?ID(-liike) on upottanut halveksivasti teistisen evoluution harhaoppina suohon. ID-instituutteihin ei evoluution hyväksyvillä teistisillä evolutionisteilla (Kenneth Miller,John Haught, Michael Dowd, Francis Collins) "sielunvihollisina" ole mitään asiaa.

  29. I had an odd reaction to A SERIOUS MAN. I wasn’t sure I liked it when I first saw it. (We’d had a screener sent to us by the studio). I reserved judgment then, about three days later, I realized that I liked it very, very much and it didn’t even matter that several of my friends acted like it was confusing or off-putting or whatever. It just burrowed its way into my psyche, and I responded.Hope to see FANTASTIC MR. FOX very soon.

  30. I’ll gear this review to 2 types of people: current Zune owners who are considering an upgrade, and people trying to decide between a Zune and an iPod. (There are other players worth considering out there, like the Sony Walkman X, but I hope this gives you enough info to make an informed decision of the Zune vs players other than the iPod line as well.)

  31. Between me and my husband we’ve owned more MP3 players over the years than I can count, including Sansas, iRivers, iPods (classic & touch), the Ibiza Rhapsody, etc. But, the last few years I’ve settled down to one line of players. Why? Because I was happy to discover how well-designed and fun to use the underappreciated (and widely mocked) Zunes are.

  32. i would not recommend the english version of My sassy girl, it so boring, nde magaling ung mga actors..i like sex and the city, i enjoyed the series, bucket list is 5 stars for me, its something that id like to watch over again, yes, knocked up is so hilarious sumakit ung tyan ko katatawa, the last kiss, yeah, i agree with you.if you are a sucker of light love story, i would recommend P.S. i love you of hilary shwank, you should watch that..luvgreens last blog post..

  33. Maashaa ALLAAH walaalaheyga qaaliga ah waan idiin wada salaamay aad ayaadna umahatsantahin seda wacen ee aad marwaliba waxa fiican noogo soogudbisaan aad ayaan idiinka mahadcilinayaah inbadan inta barnamsheshkan gacanta kageysatay thanks

  34. il n’y a pas si longtemps que j’ai acheté mes premiers calissons ! c’est une recette tentante , je pense trouver facilement du melon confit quelles jolies photos , tu fais toujours !Je te souhaite une très bonne année !

  35. All of my dogs are very loving. I’m really not sure what abuse (if any) Kayden suffered but I have never seen that type of aggression (not the playful kind) in a puppy. Even years later feeding him is hell. He eats like he’s never going to be fed again and throws HUGE tantrums (talking, impatience) while we are prepping. It makes me wonder if they were feeding him properly and how often.Glad that he is a happy boy now though. 🙂

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  37. haha ada class photo.. memang semua dok baik2 je mcm nak amek gambar tahunan kat sekolah.. hahaha…best lah baca pengalaman awak.. rasa macam nak bukak blog je jadi tahun depan boleh join… tak sangka banyak benda2 menarik kat selangor ni

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  39. Hi Ernesto, thank you for the thoughtful comment. I completely agree with what you wrote; that’s one of the reasons we have an apprenticeship program on the farm, to teach young people what we’re GOOD at doing: farming. Running the food truck required an entirely different set of skills that would require many years to achieve, and handing it off to someone else with our farm’s name on the side is just too fragile a strategy for my nerves at this point in time! I hope that makes sense :^)

  40. Der grüne-schwarze Freiburger OB Salomon gehört dem Stiftungsrat von “Lebendige Stadt” ebenfalls an. Zwar läßt er in der Öffentlichkeit (noch) dementieren, dass er ein riesiges Areal (neben anderem den historischen Karlsbau mit dem Sozialamt) an der nord-östlichen Ecke der Kaiser-Joseph-Straße zu verhökern beabsichtigt. Aber …. (Stuttgart läßt grüßen).

  41. I do believe all of the ideas you have introduced in your post. They are very convincing and will definitely work. Still, the posts are very quick for starters. May you please lengthen them a bit from subsequent time? Thank you for the post.

  42. E chao thay co .e da tốt nghiep dc 8 Nam hiện nay e dang di lam.e rệt muốn dc hoc ở truong Nhung sắp toi nha truong co khoa hoc vào buổi toi ko?e La con gai hoc CNTT co dc ko?

  43. Hiya! I know this is kinda off topic but I’d figured I’d ask. Would you be interested in exchanging links or maybe guest authoring a blog post or vice-versa? My site covers a lot of the same topics as yours and I feel we could greatly benefit from each other. If you might be interested feel free to shoot me an e-mail. I look forward to hearing from you! Great blog by the way!

  44. Kedves Cicaanya !Kinder tejszeletet meg próbáltam csinálni, és a krém nem sürüsödött be.mégegyszer megpóbáltam és megint nem sikerült.mindent betüröl, betüre követtem, és nem sikerült.nagyon bosszant, mert van 4 unokám és nekik szerettem volna meg csinálni.szeretném tudni hogy mit rontottam el?köszönettel . Pontyné, Évanéni.

  45. Le plus simple c’est de capturer avec iMovie…Puis d’importer dans final cut le fichier projet d’iMovie.Si l’importation ne fonctionne pas tu clique droit sur le fichier « .iMovieProject », et tu dis de « afficher le contenu du paquet ». Tes fichiers vidéos (en .dv) se trouve dans le dossier Media.Voilà, j’espère que ça vas pas te pourrire la vie.PS: Si quelqu’un à la reférence d’un bon bouquin sur final cut expresse 3.5, en français, je suis preneur!

  46. *hehe* Oh, I SO know that feeling! The only failsafe way of remembering for me is to trail around with my Things To Do book and pop my thoughts in it immediately; I am getting better at remembering to look at the TTD book :o)What works sometimes is for me to go back to the place that I thought of the idea IMMEDIATELY … but in my ever-advancing age (!) even this can let me down, as I get so easily distracted.I can’t wait to read the “real blog post” when you remember it, Jane!

  47. It seems we have a lot of Masons around – building, destroying, making capital, scams like banks, etc.Maybe all, who is not Mason yet, should join Masons to get power?they build then destroy then build then destroy etc.It is a comforting news: they will re-build everything, and we’ll have everything brand-new.

  48. Olá Diogo, parabéns pelo artigo!Realmente o marketing de atração é essencial para se ter sucesso nos negócios online. A maioria dos webmarketers profissionais utilizam essa técnica e tem excelentes resultados.Parabéns pelo blog.

  49. , if blacks knew how to run a country, there'd be a collection of wealthy nations in Africa and elsewhere. But there are none.Not one. They're all cesspools of disease, dysfunction and brutality, and poverty more punishing than anywhere else on Earth.

  50. Adam,If you can still find them at Bi-Mart, I would love to get some from you (Paypal, cash, whatever)…My wife and I both grew up in CA and we have mentioned them several times (away from a computer) to friends and coworkers here in NYC (clueless about this childhood staple).Yesterday, we were at Landmark Cinema in Soho (independent movie house) and found a promo postcard for the DVD release of the movie “Rocket Science” that we saw last year. The postcard design is a play on the Pee-Chee! Very nostalgic.Laurence

  51. 12,13,21 are the best of all these great photos. All of these lovely photographs reflect such happiness. Congratulations and prayers for a wonderful, long, and happy and richly blessed life together.Fondly, Beverly

  52. I agree with Mikeal. Bring six people with you, bottle water from all of the springs, and all can go into the cave at the same time. Take turns splashing water on the stone from each bottle. If you’re sealed up, it’ll be okay, because one person will get the stone.And when they’re in the right place at the right time, they’ll automatically be in the right place when someone finds the way out.I wish I lived in California. D8VA:F [1.9.21_1169](from 3 votes)

  53. I was in mourning as well… CS you are right, now more than ever our country need our prayers. More than that though we need to take action to protect our freedoms and our way of life. Do your research and support responsible candidates for local govt positions. Write letters to your congressmen. We are accountable for our actions and will be blessed as we Go and Do.

  54. Rewelacyjne zdjÄ™cia, ciekawe plenery, piÄ™kne panie instruktorki :-). Aż trudno uwierzyć, że robione “na Å›lepo” (zdjÄ™cia ;-)). Na pewno wybiorÄ™ siÄ™ z innymi mamami na taki spacer. DziÄ™kujÄ™ za inspiracjÄ™ 🙂

  55. Like Daniel states, “private policy are misleading and that rarely people ever read them.” This reminds me of the blog post that I wrote related to the youtube video, “Facebook Privacy.” When the spoke person was talking about finding where to edit Facebook settings, barely anyone would actually go searching looking to make sure all their settings are how they want them. This is why making privacy issues public is a good idea otherwise we are oblivious as to what is going on with our settings. We rarely read them unless spoken about.

  56. MLS 2289888OLP 699,000Current List 649,000Would seriously consider for 500,000 – 525,000.House is in a nice neighborhood (drexel hill), but taxes are over 750/mo, the house has an unfinished basement, 1 car garage and a fairly steep sloping backyard. Plus, Clark doesn’t have much to offer other than above average schools. The center of town is below average and residents pay extra for barbage, water and sewer on top of already high property taxes.

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