Is my friend NED getting ready to sneak out the back door? - 1247629

apat33
Posts:24

Had my scan a couple weeks ago, every the same except for a Lieomyo mass that has been there since the beginning. No pick up on the PET’s, no growth. This scan showed growth. The report said mebey look in to biopsy / removal. My daughter is an oncology nurse & actually set me up with her friend & now my Onc. That’s how I have this information now, though I won’t be meeting with him till 9/11/12. My 1st cancer in 1992 was a lieomyo sarcoma on the stomach wall. It was huge, about the size of a soccer ball. In it’s removal they also took out my spleen. Paying the price now, just got out of the hospital from getting IV antibiotics for sepsis. Will keep you updated.

Andy

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Reply # - September 4, 2012, 07:12 PM

apat33
Posts: 24

Dr West, not sure if this is the right place to ask but hope you can give me some guidance. I’ve been battling pneumonitis sense this latest scan I’m half way through a 28 day tapered prednisone 30 to 20 to 10 to 5. I did this a year ago with a 16 day taper that didn’t help. What’s different this year is that along with the SOB has come a lack of stamina. I can’t walk very far, 200 ft. & feel I’ve run a race. Have muscle fatigue, the burn, the ache. I 1st noticed it in May when I went camping. I used to be able to walk the trails, now I have trouble making it to the end of my campsite. I hope the prednisone will help but have my doubts. I consider myself in pretty good shape for a 79 yr. old. I do regular work outs. as a matter of fact I’ve increased my cardio from 45 to 60 min. a day. Strangely the burn & ache’s don’t appear on the machines. My question is, what, where should I be looking to solve this problem which is impacting my quality of life.

Thank’s in advance. Andy

Reply # - September 4, 2012, 10:03 PM

Dr West
Posts: 4735

You sounds pretty darn active. I think the one thing I can suggest is that steroids themselves can cause muscle weakness...called steroid myopathy. If there steroids aren't helping with breathing, actually stopping them MIGHT help with muscle function. The classic muscle group involved with steroid muscle groups are the large muscles of the thighs, so that getting up from a chair without using one's hands is an especially difficult task...so perhaps the particular tasks you're having difficulty with some activities but not others reflects the specific muscle groups involved.

-Dr. West

Reply # - September 11, 2012, 01:38 PM

apat33
Posts: 24

Met with my oncologist & radiation oncologist today. Over all quite good news, though don’t think I can claim NED any more. Lung cancer is unchanged from last scan. Same fibrosis as before with a slight increase inflammation or radiation pneumonitis. I’m on my last week of tapered prednisone & my shortness of breath has improved greatly. The new twist is a “lobulated soft tissue mass, 1.9 cm from the body of the stomach. This has grown slowly over prior exams. This could represent a leiomyoma or slow growing GIST tumor” We’re going to scan again in 6 mos. & see what happens. He believes this is not related to my lung cancer.
So no sign of lung cancer. A small growth on my stomach wall which we’ll watch. He said it’s unlikely a leiomyoma sarcoma would return after 20 yrs. So despite my early fears turned out to be a good scan.

Andy

Reply # - September 11, 2012, 04:48 PM

Dr West
Posts: 4735

I'm glad your breathing improved so much. I agree that it's unlikely to be a recurrence of the sarcoma. And even if there's something slowly growing (and I agree a GIST sounds very plausible), it's better to be something other than your lung cancer, especially if it's a slowly growing something. Very, very good to hear that things look good from a lung cancer perspective.

-Dr. West

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