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Don M's update 4-11-06


Don M

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Don M’s update 4-11-06

I finished my consultations at Swedish Cancer Institute in Seattle March 28. They have a cyberknife facility, called Seattle Cyberknife. Since I have only one lung, they are reluctant to place the fiducials in it due to the risk of pneumothorax. They are all taking the lead of a surgical oncologist who specializes on the thorax, regarding the risk of fiducial placement. I have had a pneumothorax at both of my previous fine needle aspiration biopsies when I had 2 lungs. I asked the surgical oncologist if they could mitigate the risk by prepping me for the eventuality of a pneumothorax by having a tube already inserted and suction available. He still thought it was an unacceptable risk. I eventually agreed with him. They offered an alternative targeted therapy treatment, Image Guided Radiation Therapy, that will come close to meeting the accuracy of the cyberknife and there is no need to penetrate my lung. Personally, I am convinced that I would have a pneumothorax. The risk comes when they try to reinflate my lung. Oops.

They have an Electa Synergy machine that has an on board cone ct device that they can use to verify the target area and refine it if needed. As I understand it the target area will encompass the entire range of motion that my tumor makes during the respiration cycle. This area can be refined a bit by reducing motion artifact and verifying the location of the target area just prior to dose.

The surgical oncologist told me that the difference in accuracy in the two approaches is just a few millimeters. But after reading about it a bit and consulting with the radiation oncologist who runs the IGRT program, I think it could be a much as a centimeter depending on the range of motion my tumor makes when I am breathing. My tumor is about 22mm x 14 mm as of a ct scan 2-23-06.

Yesterday I had the simulation to find the target area. They tattoo me as part of the preparation plan. The tattoos will give them reference points when they are zapping me. I have never had tattoos before. It stings when they do it. I am hoping that the target area won’t be much bigger than the actual tumor. 34 treatments are planned. I will start a week from today. I will be staying with my son Joe and his family for 6 weeks while I take the treatment. It is only a 20-minute drive to the facility from his house if the traffic is good. It is over 3 hours from my house. I will get to spend some time with my grandson.

Also, they think it is very likely that I have a secondary cancer and I will be doing 4 rounds of alimta after radiation treatment. I can do the alitma at my local clinic.

The cyberknife surgeon and radiation oncologist told me that one can have cyberknife surgery or image guided radiation therapy (IGRT) in the lung 3 or 4 times at least. It depends on the location and size of a given tumor. You can also treat the same area more than once. Also, you can have conventional radiation at any time …having cyberknife treatment or IGRT will not stop you from having conventional radiation in the future.

Another difference between cyberknife and IGRT, is that they could kill my tumor with just 3 treatments from the cyberknife. Since they would be certain as to the location of the tumor because of the fiducials, they could deliver much higher doses and be confident that they are just zapping the tumor and not healthy tissue. With IGRT, the uncertainty of the target area location dictates that they deliver low doses over time so that if healthy tissue gets zapped, it will have time to heal. The tumor won't heal, but the lung tissue will.

So, it looks like I will have 4.5 months of treatment total. I guess I will read up on alitma. I think it is less nasty than taxotere.

I am going to a top of the line cancer center.

Don M

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Don,

Thank you for the update,

You did your full research as usual.

So before each treatment the

IGRT will adjust to the size

of the target always inside

the range of the tattoos.

Means they are sure of a reduction.

The best to you during the treatments,

hope you will keep us posted about them.

Enjoy your grandson as much as he will

enjoy having you around.

I still have my tattoos from seven years ago.

Marked for life.

Hugs

Jackie

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Hi Don,

I really like the way you get things done. You really investigate eveything and ask the right questions. You really seem to become very knowledgeable through all of this.

I will be thinking of you, of course, and routing you on as I know this will work.

The only down side I see, is when you have to leave your little grandson and he will wonder what happened to his grandpop. :roll:

Good luck to you, my friend

Maryanne :wink:

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Hi Don, I am so impressed with the entire plan, and how on-top of this you are. I wish everyone had an advocate like you.

I didn't notice when you start treatments Don. I hope you keep us posted.

I pray that God be with you during the treatments, and that He will keep you safe and strong.

Barb

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Hi Don.

Sounds like you asked all of the right questions and got some very good answers. I have never heard of a surgical oncologist before...hmmmm ya learn something new everyday.

I like how exacting the beam can move with your respirations. Are your respirations timed? Do they try to initiate the radiation with inspiration or expiration? This is all new technology since I was diagnosed.

I am glad that you are a state of the art facility where you have the free will to actually choose between the best treatments both offered right there.

I would think that Alimta would be easier than taxotere. Don't know. Just guessing.

love on your grandson.. I am glad that you will be with family, Don. It will be all that much easier for you.

Good luck with all of it.

love,

Cindi o'h

p.s. (still got my tatoos too!)

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Don,glad you are so well informed to be able to advocate your own care so well.

The radiation does do a good job on the tumors.In my case it also caused some ill effects(fatigue,and others but all doable)but after having so much of it there is also a lot of scarring involved that has lasting effects.

I'm confident you will have good results and will be glad you did this after it is done.

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Wow Don, impressive treatment plan. The thoroughness of your research is well, just spectacular. You are a wonderful advocate for yourself. Wishing you all the best and enjoy the time with your family during your stay --

Enjoyed the very brief "hello" we had at WWO a week or so ago. You were actually parked right next to me in the parking lot as well!! Glad you posted this update -- I had been wondering how you were doing....

Best to you,

Linda

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Wow Don, you sure said a mouthful there.

It sounds like you have a good game plan ahead of you, and I also want to thank you for sharing your knowledge with us here.

You are definitely a great advocate for yourself, but you are also a great advocate and friend for us here with all the information you share.

I will pray that this really does great things for you.

Also, Keith did both taxotere and alimta. The alimta did seem to cause less nausea and was a bit easier. It's hard to tell too much because he had it directly following the taxotere and he was already worm out completely.

I will say prayers for you that the radiation and the alimta both are well tolerated and wildly successful.

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