Uterine cancer metastasized to lung - looking for others to talk to with similar condition

debrajo said:

Hey Mosie! I am considered
Hey Mosie! I am considered "in remission" at the moment. I took my last dose of taxol/carboplatin May 8, 2010 and the CA125 is good. I don't like that last visit it was 17, but dr. was comfortable enough to give me 6 month visits now. I am craving sugar and starch, but those were pre cancer cravings also. They tell me the steroids help to put weight on and o keep it on after treatments. I have been eating better, but not able to stop the Caffeine-Free Diet Cokes though I have cut down. I had to have open heart surgery 8 weeks before hysterectomy to replace aortic heart valve that had a birth defect in it. I was walking three miles a day BEFORE surgery...now I am lucky to walk two blocks. That maybe due to the heart, the cancer, the chemo,or the radiation...I just don't know. I do have an in-door stationary bike that I ride when I can. Since Mama has moved in I feel less and less like doing the bike. She tries so hard to help me that she MAKES more work for me. I use to be a big reader( also crochet, sewing, quilting, needlework, and I was a family genealogist for years), not I don't do anything(including cleaning house)except take care of the family( I had six children and so far, nine grandchildren). I am what my daughter calls a dinosaur, I have always been a stay at home Mother. I was a 1a grade C so not quite as bad as some. Do keep in touch...I could use all the input I can get from the braver of you ladies! Best, debrajo

debrajo said:

Hey Mosie, I have never
Hey Mosie, I have never heard of a dr. NOT using the ca125 at least as a base-line in the beginning. Mine was only 42 before surgery so I guess it was just getting started good. I've had one EVERYTIME I step into the doors at M.D. Anderson! I will be waiting to hear from you when you get your test back. I will be praying for good results!Some times we cuss the numbers for making us stress, but how sweet it is when the are good! Best, debrajo

Mosie said:

Hey Deb, I live in Buffalo
Hey Deb, I live in Buffalo New York,so everyone thinks Roswell is the best so thats where i went after the cancer spread.When this started last summer i did go to a different doctor, she took the tumor out and another dr. did the internal radiation.Im going to check into the CA125 with my regular Doctor.Ill wait about a month and see what we can do.You wouldnt believe what they have said and done to me. Thanks for being so nice. Mosie

Karenhopeful said:

My oncologist does not do the CA 125 test. They don't think it correlates to uterine cancers.
My oncologist tells me I'll be around for a long time, my cancer will be treated like a chronic illness. My radiologist doesn't give a time, but says we are all going to die sometime and her treatment is just palliative, we can't predict how long I may hang around -so I should be doing things that make me happy.
My oncologist says my cancer is metastatized stage one grade 3, like my original finding, only it has spread. My radiologist says it is stage 4 grade 3 because it has spread so much.
I am feeling slightly more hopeful right now. My back pain is much less, part of the nerve pain in my lower arm is gone, the pain in my underarm is almost gone, the nerve pain under my upper arm is much less. I think the tumor that was pressing on that nerve bundle is regressing. I still only sweat on one side, and my eye still droops. But maybe those can come back to normal too. I find out tomorrow if I'll be getting more radiation. Tuesday will be the end of my initial 15. The bad thing is I have a similar size tumor in the same position in my other lung. It has grown in a different direction - hopefully it doesn't connect with the nerve bundle under that shoulder!! I am like you, tired, no energy, no motivation to do much of anything, can't walk far or stand long without getting out of breath.
Another comparison of my two doctors: my oncologist says uterine cancer seldom goes to the brain, dont worry.I already have a shadow on my brain found by my radiologist who ordered the brain MRI.
I will have a ct scan around July 16. I'm anxious to compare the two tumors. Both at the top of each lung to see if we should also do radiation on my other side.

Mosie said:

Karen, i was wondering if
Karen, i was wondering if they call what you have in your lung nodules? I had a small part of my lung removed, they didnt have to do that to you? I hope you improve and feel better,I have heard of so many miracles with cancer its amazing!!! Mosie

Mosie said:

Hi Mary Ann,thanks for
Hi Mary Ann,thanks for writing.I had three doctors at Roswell all tell me the same thing.The doctor before that wasnt much help either.He did internal radiation which was very painfull,they said hold the nurses hands and scream if you need to.I later read you can be given something to help the pain.When i came out the nurse in the hall way laughed and said i lied to you it does hurt!They didnt think chemo would help,one Dr.said if it was him hed just enjoy the time he had left.I asked them to be honest with me,and they were.Later he denied saying that, but i always had someone with me,they heard it too.A few places are booked up ,no appointments that people recomended.Ill go back once more in three months and maybe by then,hear of another Dr, Thank you , Mosie

Karenhopeful said:

Up date July 18, 2012
Gosh, a month since my last post. I had 19 radiations of my right lung. New CT scan had better results than the last: tumor in abdomen is gone, no sign of any activity in lymph nodes anywhere, no new tumors, right lung decreased by half (where I had 19 radiations), left lung slightly decreased and called stable. These are big tumors - not nodules. They started at 9cm x 6 cm approximately. I will have the scheduled 6th chemo tomorrow and will continue with one a month for number 7 and number 8 as long as it continues to help. I am feeling quite good, no more back pain, nerve pain in arm almost entirely gone and what is left I don't really notice. I still get out of breath really fast, but it is a little better. I need to take a rest (long naps) after even slight physical activities. The other side effects are that I only sweat on my left side, my right eye droops.
Radiologist said no treatment for left lung unless it should also start to bother me. She also said the good news is that my tumors are sensitive to radiation.
The radiologist showed me her scans of where the tumor was pressing against my esophagus(I think, one of those pipes in my throat) and caving it in, also how it was nearly into the openings of my spine which could cause paralysis. This was never mentioned in the ct reports I received or by my oncologist. So glad the tumor shrunk!! I will have another MRI on Friday to check on the shadow on my brain. Since my small stomach tumor disappeared, I'm hoping the shadow on the brain is the same or gone. It was only about 3mm by 2 mm.