first ct on Monday since diagnosis

[keegan55]

I am a basket case waiting for Monday. I sure hope it is stable do not want any more bad news. It appears now I have a cyst on my spine blocking the nerve root causing severe nerve pain down leg: thumbdn: Now on more drugs. I still have a lesion in left lung (last surgery on right) Do these lesions shrink on meds of just stay the same? I never asked that question. I just feel like Monday will be either I live or my death sentence. So so worried

[drz]

I am a basket case waiting for Monday. I sure hope it is stable do not want any more bad news. It appears now I have a cyst on my spine blocking the nerve root causing severe nerve pain down leg: thumbdn: Now on more drugs. I still have a lesion in left lung (last surgery on right) Do these lesions shrink on meds of just stay the same? I never asked that question. I just feel like Monday will be either I live or my death sentence. So so worried

Cysts can generally be drained or removed which should relieve the pressure and the pain.

[windchime]

Lung lesions typically shrink with treatment. If not they try a different medication. That's why it's important to have regular CT's.

[Debbie C]

Keegan, I am sure you are not goning to get a death sentence. I went last week and got my bloodwork,urine test and had a scan of my lung,abdomen and pelvis. The ct of my lungs showed copd (still !) and a have 3 tiny nodules in my lung that have not changed in a year. It also showed I had about 8 - 10 cysts on my liver,some were so tiny. But I ask the radiologist and she said some people are just full of cysts on the inside and they won't cause any harm,unless of course like yours is pushed up against a nerve. But everything looked fine,all my bloodwork came back good to. What I did was have it all done Tues and went to the hosp. a got a copy of everything plus had a cd made for me. So I knew all my results before the drs. do and didn't have to worry all weekend. I am sure you will be fine also so don't worry and enjoy tomorrow :thumbsup:

[keegan55]

Thanks all I should have been more detailed about spine. I have 3 herniated disks and facet joint problems they are uncovered etc The cyst is from the inflammation I think they are going to have to clean all up for the cyst not to come back. I feel like a junkie so many meds

[Alysia]

Hi keegan. I don't understand much about it. I just wanted to send you my support and prayers and big hug :hug2:

[LisaT]

Keegan, I had a nodule on my lung, which I think is the same as a lesion with a different name, and on follow up ct three months later it was gone. I really have learned through experience not to panic about tests. It's so much easier said than done, but in the last six months I've had a lung nodule, abdominal lymph nodes, a mysterious growth near my heart and various other things that were of great concern when they showed up and then either disappeared on follow-up or turned out to be not as problematic as they appeared (one thing requires further follow up but this time I'm really not panicking). I don't know whether it's the meds, chance, miracles/answers to prayers, visualization and meditation, or dumb luck, so I continue all of the above and hope that whatever is working continues to work. I guess my point is, don't worry about the lung lesion. I think many of these in many people can heal and cause no further troubles. I have some scarring from lung nodules 20 years ago when I had polymiositis, and the docs just look occasionally to make sure they haven't changed or grown and they never have. I don't know much about the cysts and the spine, but it sounds very uncomfortable and I really hope that the doctors can do something that will bring you relief soon. Pain has a tendency to rise to the top of the list of problems because it kind of makes everything difficult. :bored: When I reach a certain level of pain, the goal becomes making it through... Everything else goes out the window until the pain settles down. Constant nerve pain must really take over and I feel for you. I hope you feel better very soon.

[annekat]

I had many small "cavitary lesions" scattered throughout my lungs at time of DX. With treatment, they all shrunk, or whatever they do, within a couple of months. I get the feeling there is still evidence of them, but they are no longer active or progressing in their damage. My lung symptoms cleared up very quickly as well. Can't speak to the spine issues, and they don't sound good, and I hope there are some uncomplicated solutions. And I hope you end up feeling greatly relieved after getting the results of your scan.

[keegan55]

Thanks for taking time to comment. My concern is that they have not been aggressive with my treatment. Only on mtx. So i am worried hopefully it will be ok

[annekat]

If you are on MTX or any of the other immunosuppressants, you'd normally be on prednisone, too. It was CTX and pred that cleared up my lung lesions so fast. But I think I've heard of others on here whose lungs cleared up with MTX and pred. With the spine issues added in, it would seem that possibly you do need something stronger, unless it's just a matter of draining the cyst, as suggested above. I don't know what kind of cyst it is, and I'm no doctor or WG expert. If you need stronger treatment, that will probably be determined and you will probably get it. I would not worry quite so much. With today's treatments, people with WG pull out of these things and usually do not die directly of the disease. Please let us know what happens.

[jmarlene.dunbar]

My husband had a rough bout with his lungs full of nodules that exploded and filled with blood. He almost died. God spared his life and he is living it to the fullest now. He has only been affected in his lungs and joints.


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