Saturday, June 16, 2012

another update .... poniendo al dia una vez mas

I had the sonogram and the doctor saw a few polyps in the gallbladder. On the 26th I will see the surgeon. For once it is not cancer related.
I am still having problems with the sleep, but once in a while I have a good day. Yesterday I had a very good walk. I was hoping for a repeat today but my energy was not there. Probably because of the lack of sleep last night.
I took the last Decatron today (hurray!). I am starting to  get small headaches again.

That's all folks. more in another day.


Querida familia y amigos,
Tuve un sonograma el otro dia y el medico dice que vio unos polypos en la vesicula. Ire  a ver al cirujano el dia 26. Por lo menos esto no tiene nada que ver con el cancer.
Todavia tengo problemas  para dormir. Pero de vez en cuando tengo un buen dia.
Ayer di un buen paseo. Esperaba repetir hoy, pero las piernas no dieron de si, Falta de sueno?
Hoy he terminado con el Decatron pero los dolores de cabeza (pequenos) estan de vuelta.

Bueno, que lo paseis bien, y mas otro  dia.

Sunday, June 10, 2012

Calvo ... Bald

Queridos amigos y familia,
despues de la radiacion fuimos a Monterey y Carmel por el fin de semana. Lo pasamos muy bien, relajados. Tengo un dolor en el costado, extrano pues solo duele cuando como. El viernes me hicieron un sonogram y el lunes sabremos los resultados. Ayer empece a perder pelo, asi que me lo he cortado y afeitado. Estoy totalmente calvo, como el de los atunes :-) .La radiacion esta viva todavia.
Tengo problemas durmiendo. Voy a dormir bien pero me despierto y cuesta volver a dormir.
El 27 de Junio iremos a Fargo para el cumpleanos del padre de Lynnette. Su familia no me ha visto desde que diagnosticaron el cancer. Espero que no sea muy de choque.
Por cierto, he comprado unos pantalones con mas "cintura" ...  :-)


Dear family and friends,
after the radiation treatment we went to SeaSide (N of Monterey). A friend from the cancer support group has a beautiful house and invited us and Norm. We had a great time (Thanks Gene and K-D)
I have developed a pain in the side. It hurts only when I eat (go figure). Friday I had a sonogram to see what is going on. Monday we will get the results.
Yesterday I started to lose hair. I shaved it all, totally bald. The radiation seems to be active
I have problems sleeping, I fall sleep fast but I wake up a lot.
I am looking forward to the trip to Fargo (6/27) for Lynnette's father's birthday. Her family has not seen me since before the diagnosis. I hope it will not be too shocking.

BTW, I bit the bullet and bought a few "wider" pants ...

Saturday, May 26, 2012

Ater the treatment ... depues del tratamiento

Querida familia y amigos,
los ultimos dias han sido algo liados.
El tumor de el pulmon parece estar bien. El problema esta con el cerebro.Seis tumores son pequenos y uno es mas grande (unos dos cms ) El Miercoles fui a ver al neuro-cirujano y su opinion era que tuviese cirujia para quitar es tumor. Al final decidi por radiacion y ver que pasa. El jueves tuve la primera sesion de radiacion, dos horas bien intensas. trabajamos en seis tumores que estaban mas cerca, incluyendo al de dos cms. Ayer tuve la segunda ronda para atacar el ultimo tumor, que aunque pequeno, esta en mal lugar (cerebelo). Toda esta radiacion me ha dejado cansado y las pastillas que tengo que tomar me hacen dormir mal. Haremos un seguimiento de los tumores en tres meses ( la radiacion continua trabajando).
Si la cosa no va bien, considerare la cirujia


Dear friends
the last few days have been busy.
The lung tumor seems to behave (good news). The problem is with brain. I have six small tumors  (pea size) and a big one (2cms)
Wednesday I saw the neurosurgeon and he wanted to operate on the big tumor. I decided to do radiation first and  see what happen. The treatment was only two (long) days. Thursday I had a two hour session to deal with six tumors (including the larger one) that were closer together. Yesterday I had the final session, 90 min, to tackle the last tumor. Even though it is smaller, the location was problematic (cerebellum). The treatments left me very tired, and the steroids I am taking do not let me rest at night. In three months we will take a look at how the tumors are doing.
If radiation does not work, I will consider surgery.

Saturday, April 21, 2012


 Dear all,
 below is a note I sent to my friends and colleagues at the lab. I think it will be worth to share it in the blog since it gives a quick summary of the last months. The only thing to add is that next week I will have the PETscan (no date yet) and that I will be in a clinical study to see if Tarziva (another cancer treatment) could be an option in the future. This is not important for me but it might help other people to identify the type of mutation in their cancer. Otherwise ... it is hot, hot, hot ... I found my shoorts!


Dear friends,

Let me first thank you for your generosity with your visits, cards, emails, meals, and in particular the vacation time donated. It has been a great help.

Things are going well with my illness. The last few months have been a roller coaster. The last time I was in the hospital it did not look good and then a few days later I got good news, the presence of a specific genetic marker in my cancer. This information allowed for a change in treatment, “ targeted therapy”, which is much easier to live with.  In addition, we were able to eliminate the pleur-evac (a box that I had to carry around to drain fluid from my lung) which made a big difference.  I am still short of breath and do not have the stamina to walk more than mile, but I am able to take a few walks around the neighborhood and once in a while I get in the car for a local day trip. Although I would love to go to the Sierra, it is too cold and the elevation makes it difficult to breath, so we visit the coast.

I have recently updated my blog, if you are interested, you can find it at: xabierupdate.blogspot.com

Thanks

Hola queridos amigos y familia

lo que sigue es una nota que mande a mis colegas en el laboratorio.

Primero de todo gracias por vuestra generosidad con cartas, visitas, correo elctronicos, comidas y en particular los dias de vacaciones donados. Todo ha sido una gran ayuda,
Las cosas van bien. Los ultimos meses han sido "un dia para arriba, el siguiente para abajo. La ultima vez que fui al hospital, el cancer no tenia buena pinta, pero unos dias mas tarde me dieron buenas noticias: el cancer pertenecia a la familia ALK. Eso abrio las puertas a un tratamiento mas centrado que es mas facil de llevar. Tambien pude dejar la caja que habia llevado para sacar el fluido de los pulmones. Todavia tengo dificulad respirando y no puedo andar por mas de 1.5 Kms. Pero doy unas vueltas al vecindario y de vez en cuando vamos en el coche a un parque en la costa. Me gustaria ir a la Sierra, pero la altitud hace dificil el respirar.

Hasta pronto.
 

 

Tuesday, April 17, 2012

An update .... poniendose al dia

There is not much new. The CAT scan did not show anything (one way or the other). They could not compare it with the x-rays. The whole thing was aggravating. We will wait to the next PET scan. That should give some light.
The last few weeks I have been more short of breath. I went to the doctor and she gave me some steroids and antibiotics.I am thinking about taking a trip to Stanford to see a doctor there.

No hay mucho que contar. El CAT scan no monstro nada importante, no pudieron comparar los resultados con los rayos X. Habra que esperar al PET scan.
Me ha costado un poco mas el respirar. Fui al medico y me receto unos antibioticos y esteroides. Estoy pensando en ir a ver a un medico en Stanford. Ya os contare.

Friday, March 23, 2012

Al fin asomo la cabeza .... Finally I show myself

Ha sido mucho tiempo y me doy cuenta de que muchas cosas han pasado. Sin dar fechas, pero en orden cronologico,:
1 El catheter se infecto y tuvieron que removerlo, unos pocos dias en el hospital.
2 Lo reemplazaron con un tubo mas grande que sacaba el fluido a una "caja" external que me tocaba llevar conmigo a todas horas. Tambien, como habia peligro de otra infeccion en los fuidos, me dieron dos antibioticos (hasta siempre).
3 Poco despues de mi estancia en el hospital me llegaron resultados de que di positivo a la mutacion ALK. Eso significa que puedo tomar una medicina nueva que funcona muy bien para mi cancer. 
4 Si, la caja es incomodo. Pero al cabo de unas semanas no se veia fluido "manando" de mi costado.
sacaron varias imagenes de rayos X y las tres dieron la misma image: limpio: no fluidos.
5 con esas noticias decidieron que no necesitaba la "cola" (el tubo connectado a la caja). Aleluya
6 Un poco despues decidieron que no necesitaba los antibioticos.

... Y ahi estamos,con libertad de movimientos, recuperando fuerzas.Me siento muy bien. La semana que viene tengo un CT scan. Espero que todo vaya bien

Un abrazo

It has been a while and I realized that a few things happened and you might not know about. I will list them in chronological order but without dates:
1 El catheter got infected late in January, and they remove it, a few days in the hospital
2 The catheter was replaced by a bigger tube and a external "box" to drain the fluid. I had to carry this box everywhere and at all times with me. Since there was a risk of infection in the fluids,  they gave me two antibiotics, in principle for ever.
3 Afer my stay in the hospital I got the results on the ALK mutation: positive.That meant that I could stop chemo and start this new protocol that targets the ALK cancer. It works very well.
4 carrying around the box was a pain. A few weeks later we notice that I was not draining any fluid. Three Xrays show that I was accumulating any fluid.
5 So we decided to remove the "tail: (el tubo y la caja)
6 a little later we decided to eliminate the antibiotics (they had no infection to fight since there was no fluid)

Well, this is it. I am happy that I am free to move. I am recovering my strength. I feel good.
Next week I will have a CAT scan. I hope for more good news.

Tuesday, December 27, 2011

an update to the update .... poniendo el blog al dia otra vez

A brief update: I got the PET/CT scan report. The results are very good, the right lung is pretty much clean and the tumor in the left lung is mostly unchanged. Good news overall.
 Meanwhile we keep draining the catheter. After the blockage of two weeks ago (had to go to the hospital for a fix), it is working well and getting enough fluid out.



Segundo "poner al dia". He recibido los resultados del PET/CT scan. Son muy buenos, el pulmon derecho esta bastante limpio y el tumor del pulmon izquierdo parece que no ha cambiado mucho. Buenas noticias.
Hace un par de semanas tuve problemas con el catheter: se obstruyo y tuvimos que ir al hospital para que lo "arreglasen". Ahora esta funcionando very well.