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Today I had my bronchoscopy. Lori is in the States and Jos has been my nurse and driver. Because reading books is so boring we decided to record this part of my journey on video and put it online right away. The coolest thing was the we were even allowed to video during the actual procedure. Its short but way real!

We did it in Seesmic Mobile. Its an application on the N95 which records the video’s and uploads it right away to the Seesmic site and also posts it as a tweet. We made a total of 10  less then a minute videos:

  1. Getting ready for the Bronchoscopy (including 6 video replies)
  2. Pebbels is here too
  3. In the car (yes, we recorded everything)
  4. Arrived in the Hospital
  5. Getting the IV
  6. Broncoscopy in progress ( not safe for @michielb… i think..)
  7. In the recovery room (look mamma i am stoned! and the Insurance paid for it too)
  8. Its over
  9. On our way home
  10. On the couch

So how was the procedure?
Because I was busy with recording I was pretty distracted from the real deal. The nurses and the doctors also took their time to explain what they were going to do which was really good. I like to know what is going to happen. And they were letting us film the procedure which gave it all a good start.

First I got the IV which actually hardly hurt. Then the rolled me into the the room where the procedure was going to happen. Here most of the explanation was done. Then they numbed my throat by spraying some foul tasting chemicals into it. This took a bit. Its like the numbing chemical your dentist uses. They sprayed quite a bit in there. And made my throat feel numb. So it worked. They do this so subdue your gag reflex and coughing when the tube is put in.

Before they put the tube in I got the general ‘drowsiness’ drug. No anesthesia but something to make me stoned. This worked right away and so they started. There was the main specialist doing the deed, and an assisting doctor who was in training. Also there were two nurses helping out. I like attention.

They put a bit in my mouth and inserted the tube. This was uncomfortable but not that bad. I wasn’t too bothered with it. Yet it wasn’t fun too. And for the really bad bits the nurses held my hand, cheesy, but it helped. In all the tube was in me for 15 minutes. They took two biopsy’s. In the end it was getting pretty rough. The doctor asked me not the cough. Which wouldn’t have been a problem if he took the tube out of my throat and didn’t wiggle it so much. I was relieved when it was over.

After the procedure they rolled me and my bed into the recovery room where we chilled for an hour and went home

Before we went home I made an appointment with my onc for next Wednesday, December 3rd. That’s when I’ll hear what they found:

  • nothing, so watchful waiting will start
  • something, so they will start a new chemo round (which I won’t do until after a thorough and smart second opinion)
  • inconclusive, so they will do a more invasive biopsy under total anesthesia (which I won’t do until after a thorough and smart second opinion)

Now I have been home for 6 hours and am fine. A bit tired and a soar throat, but that’s all. I’ll be having diner with the neighbors.

Thanks again for all the love, comments and any other form of attention. It still is great and really helps me!

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Today I recieved confirmation for the next procedure. It will take place on Wednesday morning of the 26th and is called a Bronchoscopy.

Cool image from wikipedia

Cool image from wikipedia

It’s a small procedure. They won’t put me out totally but will make me drowsy and knockout any feeling in my throat.

Then they will put a tube through my vocal cords until the the middle of my lungs. They can see where they are going with an ‘echo head’. With that they can find the exact spot to take the biopsy. This is done by a quick automated shot-like poke of the needle. This procedure won’t have any side effects and after the drowsiness wears off I will be up and running again.

Wikipedia has a great explanition.

In a week or so I will have the results of this biopsy. If it is clear then I am clear and will go into a watchful waiting process. If it is inconclusive they will do and biopsy through an operation (including 2 nights in the hospital). If they find more cancer they will recommend more chemo.

The last two options are the ones I don’t want of course. I’ll take it as it comes. I will check with Dr Einhorn if one of these occurs.

I dont’ have a date set for the result.

If you scan this code with yr mobile phone camera you will be directed to this site

If you scan this code with yr mobile phone camera u will be directed to this site

In the mean time Lori will be leaving for the States to get some air plus some mommy and friends time. After this intense summer this is the least she deserves.

I will be busy with lots of things. Like helping out getting QR-codes off the ground. QR-codes are a way of tagging or linking objects. It is a bar code type image like the one here on the left. If you scan it with yr phone camera and reader software it will redirect you to this website. These QRcodes can be put on buidlings or other objects to provide more information via a web link. This is just one applcation. It is the runner up to the Internet of Things and ubiqtious computing.

Also there is the VRM event I am organizing with others this Thursday. It will be my return on stage.

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I Just sent the email to Dr Einhorn inclusing my Oncs letter describing my case and some PET CT images. I can relax now and have a fun weekend.

Tonight I am taking Lori out to a very good restaurant. Big steps need to be celebrated, be it good or bad ones. This is a good one.

Thanks for all the support. It helps.

UPDATE: I just got a reply within the hour (I LOVE the internetz). Thank your Dr Einhorn.

He agrees with the Biopsy and predicts that we wont find cancer. He is happy to provide any further advice.  I just sent the answer through to the docter. I expect the biopsy to go through. Check this blog for updates 😎

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I Am in Control

Patton was in Control

Patton was in Control

Just called my Onc to postpone mondays procedure. This was not a problem. I am very relieved. Some how i love going against and around any system but still dread actual intervention. Or something. I’ll sort that out when my midlife crisis hits 😎

Key for now is that we will first consult with dr Einhorn and then determine what action to take. I will schedule the biopsy procedure to take place in a week and a half. To keep a slot open for now.

I am in control.

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Just heard from the doctor. This coming Monday at 10:30 I need to report at the Hospital. They will do a  endobrochial procedure for this biopsy. This means that I will brought under a bit (no total anesthetic) and through my throat they will get down in between my lungs some how. By using xrays they will know here they are and find the tissue they need.

The doctor asked me to call the oncology ward desk to make an appointment with him on the 20th for the results. Why didn’t he make that appointment already when he called?

I am not happy about this. Or better; I don’t have a good feeling about this. When i had my initial biopsy, which they did with needle, it was already pretty tricky for them to get the tissue. And Theo was pretty big as you might remember. Now they are going in for 1 of 5 spots which lit up in the PET CT. How do I know that they can do that? The spots don’t show up on an xray. And they cant interpret a PET CT scan well (my onc doesn’t even know what SUV values are). So how good will the biopsy be and will they also be able to make a good diagnosis with the biopted tissue?

As for planing. Monday I have a major client appointment which sucks to move. But that’s ok. Yet Thursday is really tricky. At 11 Lori will leave for the States. And at 2 PM the VRMevent starts which I initiated. I already made sure that it can be done without me, but still.

Tomorrow I will get the letter from my onc to send to Dr. Einhorn so that is going but timing wise is to late.

I wonder if I am fighting ‘reality’ or if this whole thing is going the wrong direction and I should take control more. Maybe Dr. Einhorns knowledge can prevent a whole lot of unnecessary process.

UPDATE: Just called Dr Einhorn to see if he is in. He is out of town and will be back tomorrow. Tomorrow (Friday) I will call the OLVG to postpone my procedure planned this Monday till I have consulted Dr Einhorn. Tomorrow I will send him my email including my oncologists letter describing my case.

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Now that I have my PET scan results and the SUV values I can compare it to what the specialists say.

I have 5 area’s which lit up positive:

RECHTER LONG NODUS 1.SUV 1.43
LINKS PARAORTAAL 1.SUV 4.22
PARATRCH LINKS 1.SUV 4.66
HOOG PARATRACH 1.SUV 3.66
VOORSTE MEDIAST 1.SUV 3.54

The names correspond with the image names and what the AMC designated them. Also I added the SUV values in the end.

Here are the visuals:

The area’s that the AMC’s nuclear radiologist identified are in the cross hairs. What they are is unsure. I do know that most are leftovers from Theo. Click on the Slideshare logo to go the a full screen capable version.

Theo has been ‘cut to pieces’ by the chemo. There is a crater like area between my lungs where tissue lights up. This ‘lighting up’ can be scar tissue being absorbed or active cancer. What it is exactly is the key question. The image “RECHTER LONG NODUS 1.SUV 1.43”  is the lung spot. My dutch Onc wants to rule out that that one isn’t related to Theo. That is why we are doing the biospy.

It is an art and not a science to interpret the PET scan results for further treatment. There is little research for my type of cancer. As said I believe that Dr. Einhorn is the best artist. The little research there is says that a negative PET scan result indicates a low likelihood of persistent cancer after chemo therapy. However a positive PET scan does not translate into a similar high probability of persistent cancer.

Matt set the bar at an SUV value of 4. His case is not the same as mine so I don’t know if I can do the same. Yet I do now that two spots are higher the 4 SUV. This is why a specialist with experience should look at this.

Need more detail? Here is the Flickr set of the PET data.

Tomorrow I’ll know when the biospy is. And yes, be sure to find me here writing about it 😎

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I have a game plan. The process of the biopsy and possible new chemotherapy won’t be stopped . Why should they? However, I am running a parallel course by soliciting the second opinion of Dr. Einhorn. He is the specialist for my type of cancer and I have all his contact information. He increased he survival rate for testicular cancer, from 10% to 95%.

My short term goal now is to make sure I have all the data he needs. In short this is:

  1. General diagnosis and treatment information
  2. Blood results during diagnosis and now
  3. PET scan source data
  4. PET scan SUV values

General diagnosis and treatment information
My Oncologist is on board and helping me with the new parallel track. He will send me a description of the diagnosis and treatment information.

Blood results during diagnosis and now
Today when I went in for my hearing test I went by to ask my Oncologist if it was smart to do a blood test now so we have the latest results. This can be good when you compare it to the first blood test during diagnosis. I was very happy that he agreed with my ad hoc request today.

PET scan source data
In oder for Dr. Einhorn it will be best if he can make his own analyses. For that I need the PET scan source data. I requested this already monday and today could pickup the CD. It took me a while to figure out how to view the image data. It is pretty tricky planning with mutiple images, types of images, contracts and other filters etc etc.

PET scan SUV values
Key for determination of treatment for my type of cancer post chemo is what area’s light up as positive and how much they are positive. This is expressed in ‘SUV’ values. Monday I asked my Onc for these SUV values. He said he didn’t have it and only got positive or negative as a result.

This worried me. His method was different and not as ‘detailed’ as the ones Matt told me about and what I saw in the literature. I even questioned if the SUV values were determined at all in my PET scan. I am facing a potentially incorrect treatment recommendation due to lack of the correct data and updated protocol. This is understandable because Mediastinal Germ Cell Tumors are extremely rare.

So today when I got the PET data I was looking for the SUV data. As said, the file format is pretty difficult. To make sure my quest wasn’t in vain I also called a friend who works at the hospital where the PET scan was done. I aksed him if he could verify that the SUV data was in the PET scan results. After a while he confirmed that it was. And I found the PET values.

So now I wait for the info from my Onc. He said that he’ll email it on Friday. Together with all the other info I’ll get that to Dr. Einhorn. BTW tomorrow my Onc will call to tell me when the biopsy operation will take place.

Here are the PET scan iamges with the interpretation from the AMC. Don’t try to conclude anything from this unless you have studied for it. The area’s that the AMC’s nuclear radiologist identified are in the cross hairs. What they are is unsure. I do know that most are leftovers from Theo. Click on the Slideshare logo to go the a full screen capable version.

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Me in 3D

I got the data of the PET scan today. It was easy to load it into an PET image result viewer like the one from OsiriX. It was a bit more work to understand how to use it. But now I know. See me in 3D:

You cannot derrive any medical conclusions related to my cancer from this video.

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Not Done Yet

This morning I woke up at it dawned on me a bit more what I heard yesterday. And it didn’t make me happy. The prospect of what might happen – another 4 months of chemo therapy- is an awful one. I am a emergency case again.

I got loads of support from friends, IRL and virtual. And that helps a lot.

Thinking about the possible next steps made me question the reasoning of the oncologist. Why didn’t he have any values (SUV) about how positive the PET results were. Just a binary negative or positive is OK, but you get more information when you now how much positive or negative some thing is.

And then Matt mailed me. Matt is someone who found me online when I started my journey and who has the same cancer. He went through everything a year ago. He asked me about the PET SUV values and also about the BHCG blood markers in comparison to when I was diagnosed. Basically he helped me see that I should not to easily go along with what the doctor says. A Mediastinal Germ Cell tumor is a unique form of cancer with which there is not a lot of experience, worldwide.

When Matt was done with his first chemo he flew around the States to talk to several specialized Oncologists in order to have a good idea what the next step for him was. He found out  that there are a lot of different approaches. One of the oncologists he met with is Dr. Lawrence Einhorn,  Inventor of the BEP chemo (what they treated me with) and the doctor who helped Lance Armstrong.

In his email this morning Matt gave me the contact data and recommended to contact Dr Einhorm because he is the specialist in Mediastinal cancers. So this is what I intend to do. Today I already tried to talk to my own oncologist but he hasn’t returned my call yet. UPDATE: He is onboard.

I think this it is a wise step for me to talk to one of the world renowned oncologists who is also specialized in my type of cancer. Get the best help there is. Why not? An email is sufficient. Also, I really hope that my oncologist is willing to travel this part of the journey with me, together. We’ll see.

So I am not done yet. I am starting parallel to the biopsy this other ‘quick yet smart’ second opinion path. To know for sure that we are doing the right thing. And of course i’ll keep you posted 😎

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Another Looping

Another Looping

Today Lori and I went to see the Oncologist (‘onc.’) at 12. He is the main onc at the OLVG and it turns out he was disappointed with the PET scan results. He said there was a lot of residual active mass which was active on the PET scan. This was more then he expected. To further complicate matters, there was a small mass or possible mark on my lung. The lung mark was there previously, and had shrunk with the BEP Chemo,  but together with the amount of active residual mass it might be something.

It’s no positive news. But also no clear negative news. We need to check what is left of Theo.

Next step is to schedule a special biopsy in my mediastinal area, the area between your lungs. This is a day treatment under a little bit of an anesthetic. Its a bit more work then the previous biospy I had. They will cut me open a bit more and with a camera find the active residue in order to get a ‘detailed’ biopt. More info here about the procedure.

This mini operation will be done as soon as possible. We asked this because Lori is about to go to her Mom in the States and would like to do it right when she gets back. The Onc advised us not to delay because if the results of this mini operation are negative they need to start another chemo round right away. Thursday the Onc will call when the mini operation will take place. As soon as we know that we’ll see about her trip.

If the out come of the biopsy is negative they will start 4 rounds of chemo as soon as possible. Overall treatment effects will be the same as before. Its hard and heavy. Again 6 days in the hospital and all that… A new no-fun scenario.

If the out come of the biopsy is positive the onc will probably start the watchful waiting process. That would be much better.

Also I told the onc about the various side effects I have due to the chemo. One of the things is that I suffer a bit from hearing loss. If I go into a new chemo therapy this is important to know because then it might get worse. Next Wednesday I will visit the ear specialist to checkout my hearing. No biggy but still…

So how do I feel about all this?

I am not happy about the possible 4th scenario: back to chemo. That would be a major big bummer. For the rest it just sucks that Theo is not gone yet. But it might be…. I am happy about action. Meaning the biopsy. That will provide clear information about the next steps. In the mean time I will just focus and good food, some sports, Lori, kick ass SPRXprojects and the VRMevent on the 20th. Theo won’t hold me back.

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