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Don M's update 9-13-06


Don M

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I recently finished my treatment. I had Image Guided Radiation Therapy, 33 treatments that ended in early June At Swedish Tumor Institute. Then I had 4 rounds of Alimta that ended 2 weeks ago at my local clinic. A week ago, I had a PET/CT scan to see what my tumor was up to.

My PET/CT scan report was less than stellar. The tumor still has a high SUV. It is 7.9. Last time it was 7.2. It is the same size. Maybe it is just dying a very slow death. I see my medical oncologist next Tuesday. I am going to set up a phone consultation with my radiation oncologist at Swedish. The message board cyberdocs say immediately re radiating the tumor is not a good idea because it is not clear what the source of the high suv is. It could be from a secondary inflammation after radiation. There were no new tumors. I think I may be in the wait and see mode. At least I am not super depressed, but I had chills as I read the report and it sunk in that the tumor is “likely persistently viable” and “hypermetabolic”. I was hoping it would be dead, dead, dead. Not, “it’s ALIVEEEEE!”

Don M

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Sorry about this, Don. For some reason I just felt it would all turn out more positive, didn't you? Your attitude has been remarkable.......hope you can keep your spirits up to continue on. I'll remain hopeful there is inflammation and that is the cause of the SUV level. You so deserve to catch a break here. I'll keep up the prayers for one for you. I'll be anxious to see what is recommended. Are you okay with 'wait and see' for now?

Kasey

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Yeah kasey, I am ok with wait and see. My medical oncologist called me tonight and he thinks that is a likely option. I am just glad there is no new disease. After consultations, and if wait and see is the next course of "action", I will just go on with my life until the next scan. Three months.

Yeah, I was convinced that it would be dead. And for the previous two tumors, I was convinced that I was cured. now I am content to believe that the persistent tumor is dying a slow death. Three months without treatment is not too much of a risk.

Thanks for your prayers Kasey.

Don M

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I am so sorry that you didn't receive better news. Your positive advice and attitude has been an enormous help to me in dealing with my nodule scare. I'm hoping that your tumor is just going out in a blaze of glory and will go kaput. You are in my thoughts and prayers.

Carole

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Hi Don, So sorry to hear the spot is still there. You know the radiation continues to work for some time after treatments. Hopefully things are just smoldering away down there.

Prayers that this spot will be lifted from your body Don, Barb.

Love and mercy is what we need tonight. brian wilson

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I think it is important to find out if that uptake is due to radiation or not. Remember I had a nodule in my left lung to light up on my last PET scan and it had never let up before. I had to have a biopsy to confirm that it was not cancer. It was found to be scar tissue. I truly believe that it lit up because of the radiation to my right lung even though this nodule was in my left lung. The good news is that the tumor that you have has not grown and that there are no new ones. Staying positive and prayerful for you.

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Hey Don,

At this point we know that there is bound to be tons of inflammation at and around the old tumor site. How could there not be? I am sure that is what shows up on the PET. The words on paper from the read are discouraging, but they are only words. What counts is that the work you have done is what is causing the tumor cells to die a billion at a time. All that is left is a charred little bugger in there. Still cooling off.

Die, tumor, die.

Cindi o'h

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Thanks for your support you all.

I feel better abut it now and am content to wait and see. I have talked to a number of experts and they all say that it is more likely that the high SUV is from inflammation following radiation rather than from the tumor.

Jen: SUV stands for standardized uptake value. It is a numerical system that shows how much radioactive sugar solution has been absorbed by a tumor or an inflammation. Tumors and inflammations are greedy for sugar and when it is introduced in my blood stream, they are the first to grab it before the rest of my body finds out it is there. It shows up on the film as a bright spot. A SUV of 2.5 is borderline for malignancy.

Don M

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Dear Don,

I'm voting for inflammation -- stands to reason, doesn't it? And I join the crowd that's waiting to hear about one dead tumour. Know that we're all in here, plugging for you and sending deadly vibes to that tumour along with enlivening/encouraging/reverberating vibes to you.

Ellen

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Darn Don, sorry for that news. It seems to be one freaking thing after another. Yes, you do deserve a break, I just wish it was a permanent one.

I hope they can find the souce of the suv. That has to be so frustrating to go all through that and to get those results.

I will keep you in my prayers for better results next time.

Maryanne

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Hey Don ~

Definitely not the best news, but at least there are new no ones, or growth. (small comfort, but hey, we take what comfort we can get, huh?) I'm praying the high uptake values are simply evidence of a FRYING tumor....I am envisioning it VAPORIZING!!!! POOF!!!! :wink:

Yours in HOPE!!!

Dazy

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