Jonny May

I just made it back to KS late last night.

I imagine many of you heard that I was in the hospital for a couple of days this week. I went in Wednesday evening and got out Friday afternoon. I was going through an unusual amount of pain all the way from my right shoulder to my right side. It made it difficult to breathe, and my Oxygen levels were low. I was getting oxygen in the hospital, but it was drying my nasal passages out and I kept getting nosebleeds. Unfortunately, after running some tests to rule out blood clotting and such, they were unable to do much for me. From what I understand, some tumors became irritated and bled out in to my lungs. I was hacking up plenty of blood before, during and after my hospital stay. So I am just trying to manage the pain with painkillers. Hopefully I’ll be able to breathe easier soon.

I’ll write more this week. Have a very Merry Christmas!

I thought some of you may be interested in how these things read, so I thought I’d type it out (word for word).

Scan performed on 11/28/07 

EXAM: FDG-PET/CT TUMOR IMAGING

HISTORY: A 26-year-old male with metastatic sarcoma with primary lung metastasis who is currently on protocol XXX-XXX. He presents for restaging FDG PET CT scan.

TECHNIQUE: (okay I lied, I’m skipping this part)

Comparison is made with PET/CT dated 10/04/07

FINDINGS: There are numerous FDG-avid pulmonary and pleural-based nodules within both lungs. The nodules are variable in size and show variable FDG uptake. On the previous PET scan, the sizes and SUVs of 3 nodules are given for reference. On this examination the sizes and SUVs of the same nodules are given for comparison. The nodule in the left superior mediastinum currently measuring 3.3 x 3.5 cm with a maximum SUV of 3.5. On the previous exam the same nodule was 2.7 x 2.5 with a maximum SUV of 4.1. The cluster of large nodules along the left major fissure, the largest nodule currently measuring 4.8 x 4.1 cm with a maximum SUV of 3.9. When compared to the previous exam the size was 4.0 x 3.5 cm and SUV was 4.8. The nodule in the right lung base currently measuring 3.3 x 3.8 with a maximum SUV of 4.0. Previously it measured 3.5 x 3.2 with a maximum SUV of 4.3.

The mild FDG uptake in the soft tissue of the anterior medial left thigh is again demonstrated in this study with a maximum SUV of 2.6 with no significant change since the last exam.

There is FDG accumulation again demonstrated in both tonsils, the maximum SUV on the left side is 6.6 and on the right side is 6.9. In addition there are two submental FDG-avid lymph nodes. The lymph node on the left side measures approximately 2.1 x 2.2 cm with a maximum SUV of 3.8. The lymph node on the right side measures approximately 1.8 x 1.7 cm with a maximum SUV of 3.6. These finding most likely represent inflammation.

IMPRESSION:

1. FDG PET CT scan is markedly abnormal demonstrating numerous FDG-avid pulmonary and pleural-based nodules within both lungs. Based on the masurement of threee nodules for comparison with the previous PET/CT scan, there is an average decrease in the SUV between 7% to 19%. However, the size of the nodules has increased approximately with an average of 30%.

2. FDG uptake in the anterior medial left thigh demonstrates no interval changes.

3. No findings in the abdomen or pelvis to suggest malignancy.

I was a bit alarmed by the findings. However, I was told that they got the real good news that they were looking for - decreased FDG uptake. The growth, I guess like the findings with my tonsils and lymph nodes, may be the result of inflammation. Also, I was told that some growth like this is consistant with necrosis. My CT (with contrast) on 1/10 will give us more of an idea on what is going on with actual growth as it is a better tool for measurement. We’ll also see from those results if another biopsy will be necessary.

I should be back in Kansas for a couple of weeks starting on Wednesday or Thursday. Continued thanks for your support.

Hi, I have been getting reacquainted with living in the Toledo area. The moving process has been slow, but it’s coming together. I’ve felt pretty well for the most part since my last post. It hasn’t been perfect, but as good as I can ask for all things considered. I had a nice Thanksgiving at home. I didn’t get to do much pheasant hunting last year so getting out a few times around the holiday was a treat. It is a bit frustrating at the same time because my stamina isn’t what it used to be. Now that I can move fairly well, I get short of breath much faster. Last year my leg was more of a bother when my stamina was better. I hope that it is just a lack of exercise issue rather than a decreasing lung capacity issue.

Next week I will have to return to Minnesota to tie up a few loose ends. I will then return to Mom and Dad’s in KS for Christmas and New Year’s. I will have my next scan in Detroit on January 10th. I was able to schedule blood work back in KS so I won’t have to travel back to Detroit for my regular 2-week checkup. I will be there Thursday for my last visit until the 10th. I will continue to keep all of you informed the best that I can.
I can’t tell you how much I appreciate all of the support and prayers. May God bless you all.