Aa
NOT CANCER - SIDE EFFECT OF COMBO TX
At the moment all current test results indicate I do not have cancer. The tumor (now they call it a nodule) did not light up on the PET scan like the oncologist expected it to. There were no indications of cancer anywhere in my body.
All the tests indicate I have Sarcoidosis, a lung disease characterized by lumps and scarring of the lungs. It's classified as an autoimmune disease. Treatment consists of prednisone which I inhale once a day. In some cases it clears up on it's own in 24 -48 months and in others it's a chronic lifetime illness. It can spread to other organs - the first one being the liver. Great, it's still my liver that will get me in the end. LOL.
No one knows how or why it starts. There are no known causes or triggers, but it does have something to do with suppressed immune systems. The pulmonologist and the oncologist both believe it's a side effect of the combo tx I've been on for the last year. One of the first signs is little red bumps that appear on face and arms. I had those, but just assumed they were part of the riba rash.
We're still going to be keeping an eye on the nodule just in case. I have scans, blood tests, etc scheduled for every six months. If it starts growing we'll decided what to do then.
All the tests indicate I have Sarcoidosis, a lung disease characterized by lumps and scarring of the lungs. It's classified as an autoimmune disease. Treatment consists of prednisone which I inhale once a day. In some cases it clears up on it's own in 24 -48 months and in others it's a chronic lifetime illness. It can spread to other organs - the first one being the liver. Great, it's still my liver that will get me in the end. LOL.
No one knows how or why it starts. There are no known causes or triggers, but it does have something to do with suppressed immune systems. The pulmonologist and the oncologist both believe it's a side effect of the combo tx I've been on for the last year. One of the first signs is little red bumps that appear on face and arms. I had those, but just assumed they were part of the riba rash.
We're still going to be keeping an eye on the nodule just in case. I have scans, blood tests, etc scheduled for every six months. If it starts growing we'll decided what to do then.
I wonder if they base your diagnosis strictly on the one nodule in the lung, or if you have other symptoms as well. Since it is a systemic disease, there could be some other symptoms.
I share your concern about prednisone, but you may want to get a second opinion before you start taking that stuff. This is one sun of a gun disease to diagnose, and since it is not all that common, you want to hear from at least 2, if not 3 docs that they are certain about this diagnosis.
Ina
I share your concern about prednisone, but you may want to get a second opinion before you start taking that stuff. This is one sun of a gun disease to diagnose, and since it is not all that common, you want to hear from at least 2, if not 3 docs that they are certain about this diagnosis.
Ina
I thought about that too. As I understand it they've ruled out all the other options. There have been several doctors involved in this, including the Hep dr's office. They aren't basing it on the nodule, they are basing it on the fact that my lymph nodes are involved along with the nodule and that the ACE level in my blood stream is high.
I agree about the prednisone and am in consultation with another Hepatologist, but I can't just do nothing about the sarcoidosis. What a conundrum.
What a flurry of phone calls between doctor's offices. Too bad I'm not sick enough to get off from work. LOL
Have a good evening.
I agree about the prednisone and am in consultation with another Hepatologist, but I can't just do nothing about the sarcoidosis. What a conundrum.
What a flurry of phone calls between doctor's offices. Too bad I'm not sick enough to get off from work. LOL
Have a good evening.
That's the best possible news! I'm thrilled for you! I've been wondering how you've been and i'm happy happy happy. tracy
I think you have reason for guarded optimism. You're one tough lady Mrs. O and I wish you good luck. I think a congratulation is appropriate. Good luck to you. Mike
i am not sure if congratulations are really the order of the day?? but i am glad: yu posted ;that yu don't have cancer;that you appear unbowed by these continueing medical problems...GOODLUCK...by the way,i too am having lung issues post trx ..
Eisbein, your right about not being able to retreat with current combo therapy. The other problem is that the tx for Sarcoidosis is prednisone (which I inhale) and there is some evidence to suggest that steroids retrigger Hep C in patients that are SVR.
My 6 month PCR is Mar 13 and my apt with Hep dr is Mar 22. It will be very interesting to see what happens next. See, I told you it would be my liver that gets me in the end. LOL
Thanks for the good thoughts and well wishes.
My 6 month PCR is Mar 13 and my apt with Hep dr is Mar 22. It will be very interesting to see what happens next. See, I told you it would be my liver that gets me in the end. LOL
Thanks for the good thoughts and well wishes.
It's wonderful news that you do not have cancer. I've been thinking of you and hoping for the best.
so glad you don't have the big c, and I hope the other thing clears up the longer you are off tx...best of luck with this...
So nice to hear from you. I have been wondering how you were doing. Whoopeee for you. While I know it's not great news it sure beats the original diagnosis. Hang in there!
Val, great news. Although, it would be nice NOT to have a doc appointment on the calendar at all. I bet you are relieved. I am, for you.
I am so happy for you, I mean that it didn't turn out to be lung cancer.
Interferon most certainly can cause sarcoidosis. I have read about it, and seen posts at a doctors forum about it. It happens rarely, but sometimes it does.
I don't know if you are SVR, I surely hope so, because I also read that patients who develop this condition can not be retreated with current Interferons.
Good luck to you,
Ina
Interferon most certainly can cause sarcoidosis. I have read about it, and seen posts at a doctors forum about it. It happens rarely, but sometimes it does.
I don't know if you are SVR, I surely hope so, because I also read that patients who develop this condition can not be retreated with current Interferons.
Good luck to you,
Ina
Good for you mrs. o!! I remember your posting about this awhile back and was wondering how it was goin for you.
Goldyn, haven't been on line a couple days but you ask me about taking the wb booster . I started neupogen last week for it and the sx's are pretty rough.
The procrit I welcome , the anemia made me want to quit , so it's no poblem doin the shot.
Dern tx seems to hammer on us all the way and it's shot 35 of the peg this fri.
Can't wait to get back to a normal life, haven't been runnin hounds this fall yet!
Goldyn, haven't been on line a couple days but you ask me about taking the wb booster . I started neupogen last week for it and the sx's are pretty rough.
The procrit I welcome , the anemia made me want to quit , so it's no poblem doin the shot.
Dern tx seems to hammer on us all the way and it's shot 35 of the peg this fri.
Can't wait to get back to a normal life, haven't been runnin hounds this fall yet!
What great news Im so glad its not cancer, just pray all you have to do is use the spray, and it will be over.....
Thanks for the links!!! I didn't think to google the two together. I just went for the lung cancer. I wish there was more info out there on possible side effects than just the basics. But it wouldn't have made a difference, I still would have treated.
What nasty drugs we have to take.
What nasty drugs we have to take.
What wonderful news. I've been worried about you and all you were facing, I am so glad it turned out not to be cancer. I realize it is still of concern, just glad it isn't worse.
I hope the meds clear it up for you soon.
I hope the meds clear it up for you soon.
Mrs O - I had no idea that there was so much out there on this - here is an address that gives a lot of links
http://tinyurl.com/wjmbc
http://tinyurl.com/wjmbc
hooray hooray hooray hooray
I have been thinking about you often and am glad you posted this.
Valorie, I have done a little research on hepatitis C and lung disease and the researchists seem to feel that hepatitis C inflames the lungs in the same way it inflames the liver. The research has led them to believe that the treatment for hep C may, in fact, help lung disease. However, the treatment can cause damage too.
There is a magazine called Chest Magazine that is specifically for pulmonary specialists. I found 3 articles googling hepatitis C and lungs. The older two you can print out from the site, but the latest one, which is kind of a summary of the other two, is new and you have to pay for it. I found it in the library at my hospital and made copies. If you would like those I can try to get them for you -- you can contact me at my screen name ataoldotcom.
http://www.chestjournal.org/cgi/content/abstract/128/4/2882
from the full text:
"IFN- was documented to successfully treat chronic HCV infection very early after HCV was first isolated.101102 This discovery was soon followed by reports of cases of IFN-associated pulmonary complications. Most of these were case reports, making it difficult to accurately estimate the incidence of such complications. However, interstitial pneumonitis, BOOP, ARDS, pulmonary hypertension, exacerbation of asthma, and sarcoid-like disease have been described in patients with hepatitis C undergoing treatment with IFN."
I think if you loo at this article, you may find a lot of links to Sarcoidosis. I am just so grateful it is not lung cancer
frijole
I have been thinking about you often and am glad you posted this.
Valorie, I have done a little research on hepatitis C and lung disease and the researchists seem to feel that hepatitis C inflames the lungs in the same way it inflames the liver. The research has led them to believe that the treatment for hep C may, in fact, help lung disease. However, the treatment can cause damage too.
There is a magazine called Chest Magazine that is specifically for pulmonary specialists. I found 3 articles googling hepatitis C and lungs. The older two you can print out from the site, but the latest one, which is kind of a summary of the other two, is new and you have to pay for it. I found it in the library at my hospital and made copies. If you would like those I can try to get them for you -- you can contact me at my screen name ataoldotcom.
http://www.chestjournal.org/cgi/content/abstract/128/4/2882
from the full text:
"IFN- was documented to successfully treat chronic HCV infection very early after HCV was first isolated.101102 This discovery was soon followed by reports of cases of IFN-associated pulmonary complications. Most of these were case reports, making it difficult to accurately estimate the incidence of such complications. However, interstitial pneumonitis, BOOP, ARDS, pulmonary hypertension, exacerbation of asthma, and sarcoid-like disease have been described in patients with hepatitis C undergoing treatment with IFN."
I think if you loo at this article, you may find a lot of links to Sarcoidosis. I am just so grateful it is not lung cancer
frijole
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