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A new menber's current situation. want some advice or encouragement


#1

my synovial sarcoma in lungs recurrence about 3 times.

my first tomotherapy used on the lungs just 3-4 months ago.now a new tumor is beside diaphragm and 3-4 months ago there was no tumor in that positon.

i will do tomotherapy again.

and now i have 2 doctors provide different treatment as follows

1. biopsy(because the positon is unusual(??) and Votrient

2. biopsy is unnecessary. high dose chemo including ifos, vp-16, methotrexate, lipo-dox, taxotere

i have experience of high dose chemo 2 times. it can make my lungs clean about a year and half(including half year for chemo). now i more likely choose high dose chemo.

give me some advice or encouragement~~thank you~~


#2

Is the tumor inside the lung tissue or between the lung and diaphragm?

What does the first doctor think it could be if not synovial sarcoma?

You should follow your gut feeling and go with the doctor you trust most. If you still are not sure, you should get a third opinion. When you make your decision, consider all the possible outcomes (bad or good) and pick the option that you feel you won't regret no matter what happens.


#3

I'd be cautious about the use of radiation to the lungs, as with my experience I developed what is called radiation pneumonitis where there is inflammatory damage to the lungs caused by the radiation. As a result, I have severe shortness of breath which has compromised my quality of life, but not enough to be on oxygen. I take a low dose of predisone which has helped tremendously to keep the inflammation under control. My pulmonogist calls it consolidation of the lungs, better yet occlusions of airways, air sacs and blood vessels. It is even more taxing due to the chemo therapy I'm doing which is the Votrient that the Drs. want to try for you. The Votrient is working after following a regimen of High Dose Ifosamide. I don't really understand why they want to do a biopsy and I would seriously question that.

I would consider all my options first before doing the radiation especially if the tumors are small. It sounds like they respond well to chemo if they could come up with a good regimen...there are many more drugs for sarcomas than there use to be...and don't be leary about clinical trials...I was on a clinical trial that had me stabilized for 5 years.

By the way, the damage to the lungs didn't happen right away. It took place after a high dose of chemo was administered. I would seek out other opinions of sarcoma specialists. Some Drs. think radiation is a quick fix, but I would only use it if there was absolutely no other option available. This is a wonderful place for you to get advice and opinions of others who are going thru treatment.

Keep fighting,


#4

tumor is inside the lung. the first doctor didnt say anything about that.

won't regret is really important. thank you for advice.

Elodie Espesset said:

Is the tumor inside the lung tissue or between the lung and diaphragm?

What does the first doctor think it could be if not synovial sarcoma?

You should follow your gut feeling and go with the doctor you trust most. If you still are not sure, you should get a third opinion. When you make your decision, consider all the possible outcomes (bad or good) and pick the option that you feel you won't regret no matter what happens.


#5

now my pulmonary function seems well. thank you for the advice.

there are not many sarcoma specialists in the place i living. clinical trials are also few.

imaFighter91 said:


#6

sending you positive thoughts for a sucessfull treatment regime.


#7

well, because the tumor is a little ...big(5*4*3cm), so i did tomo. i almost not feel any uncomfortable.

doctor wanna do biopsy because he wanna research the gene. but other hospital already research that few years ago, so i did not do biopsy.

the 2nd doctor is my primary doctor since i was diagnosed the ss, she said taking Votrient may be too risky.

so i maybe start chemo after 1-2 week.

and i hope, at the same time i can finish my last semester in college and continue my orthodontic treatment and still be alive...


#8

Good luck Zoe! Let us know about your progress...