After years on my own I'm happy to have found you!

donna_lee

PonyWave said:

I have just begun to walk and

I have just begun to walk and can type better than my grandma! Lol!

The pretty little girl is my granddaughter, Emma. She just had her first birthday in March. I love her personality. She seems to be outgoing and adventurous.  

Im sure I'll be searching for help here. Things keep coming up that rock the boat! I get sea sick!

Thank you for the warm wishes! I wish the same to you!

To answer other ??? for you.

NED means No Evidence of Disease...as in they haven't seen anything in the blood work or any kind of mechanical scan that indicates a difference from the one prior.  It's what we all hope for, because with kidney cancer, there is no way to say "you're cured".  At this point-2016-there is not test that can tell if there is any of the kinds of kidney cancer alive or multiplying in your body.  So NED it is.

I'm surprised the optomotrist is prescribing prednisone.  Usually that is reserved for ophalmologists.  The lesions or spots in my husbands lungs were not large-probably in mm. and the methotrexate did make them go away.  While he was being seen at OHSU, a Fellow from South Africa, used him as a final test in his study of a diagnostic procedure for sarcoid uveitis that could be done with photo microscopy instead of biopsy.  The inside of his eye was the cover photo for Opthalmology Today.

My concern for you is that the sarcoid in your lungs could be aggravating or a contributing factor to your asthma.  Methotrexate has come way down in price now that is generic.  A dermatologist had mentioned it for my son with psoriasis over 35 years ago, but didn't want to use it because of the side effects and need for liver monitoring, especially in a child younger than 10.  Put it on your question list for the next time you see your oncologist or PC Doc.

Hug that sweetie for me.  You're both pretty cute.

donna_lee

 

sblairc

PonyWave said:

Chromophobe RCC

Hi Sblairc,

i was told the same thing about chromophobe RCC. I hope your husband continues to do well! Good luck at his checkup! I think I was lucky that it's slow growing since it took so long to diagnosE.  Was your husband having any symptoms? 

Thank you for the warm welcome!

None.

Nope! Nothing until he started to bleed out in the toilet, I think the tumor was so necrotic it was breaking up and passing through him. 2.5 years with surgical "remission" so to speak. I pray he is cured. 

PonyWave

donna_lee said:

To answer other ??? for you.

NED means No Evidence of Disease...as in they haven't seen anything in the blood work or any kind of mechanical scan that indicates a difference from the one prior.  It's what we all hope for, because with kidney cancer, there is no way to say "you're cured".  At this point-2016-there is not test that can tell if there is any of the kinds of kidney cancer alive or multiplying in your body.  So NED it is.

I'm surprised the optomotrist is prescribing prednisone.  Usually that is reserved for ophalmologists.  The lesions or spots in my husbands lungs were not large-probably in mm. and the methotrexate did make them go away.  While he was being seen at OHSU, a Fellow from South Africa, used him as a final test in his study of a diagnostic procedure for sarcoid uveitis that could be done with photo microscopy instead of biopsy.  The inside of his eye was the cover photo for Opthalmology Today.

My concern for you is that the sarcoid in your lungs could be aggravating or a contributing factor to your asthma.  Methotrexate has come way down in price now that is generic.  A dermatologist had mentioned it for my son with psoriasis over 35 years ago, but didn't want to use it because of the side effects and need for liver monitoring, especially in a child younger than 10.  Put it on your question list for the next time you see your oncologist or PC Doc.

Hug that sweetie for me.  You're both pretty cute.

donna_lee

 

NED explanation

Thank you for the explanation. That must be why when I asked my doctor's nurse practitioner if I was cured at the five year mark she said "In a way, but we're going to watch you forever." I still have a lot to learn And I'm glad I found this board. 

My pulmonist was the one who put me on prednisone not my opthomologist. I'm getting the doctors and specialists confused! I was referred to her after a lymph node biopsy came back with a sarcoidosis diagnosis. My urologist who did the nephrectomy had the mediasternal lymph nodes biopsied because one of the radiologists at HUP caught a slight difference on a chest X-Ray in that area compared to my prior X-rays. Everyone thought the cancer had metastasized and we were all surprised by the sarcoid dx. I was having trouble swallowing at that time but my lungs were fine. And I still had a lot of pain over the right kidney where the partial nephectomy was done. The prednisone cleared up the swallowing problem as well as the pain.  i wasn't having any lung issues in the beginning of the sarcoid treatment (7-2013) but soon developed an unrelenting cough. My breathing studies showed an improvement after nebulization even in the beginning but I was still kept on prednisone only. It has been a miserable time since then as I only found relief for sob and the nasty cough with a new doctor in February of 2016. My poor husband suffered as much as I did through the restless nights!

Most of the lung nodes are 5mm or less and have been stable. But two grew from 3 mm to 5 mm on my last CT scan with a six month interval between scans. I wonder if they're growing because I'm not on prednisone? I'll be sure to ask about the medicine you mentioned at my next appointment  

So far there's no sign of sarcoid in my eyes. I see my opthomoligist in May. I'm sure your husband's uveitis must've been painful! I'm glad he's received the most cutting edge treatment and I wish him well! Does your husband have sarcoid any where else? My new pulmonist asked if my heart was ever tested for sarcoid. It seems my heart has been affected by all these kidney issues too. I regress every time I have a new kidney stone attack that always originates in my partial right kidney - of course - and with urethers too small to pass even small stones. I've had two lithotripsies and a major stone event since my surgery in 2010. 

foroughsh

PonyWave said:

Good morning, Foroughsh,
i

Good morning, Foroughsh,

i was so surprised to login and find the many warm responses to my first post. Thank you for your kind words! 

It is scary to have so many strange symptoms after the diagnosis. My heart seems to have been affected by my cancer too. Or the stones. Or sarcoidosis. i don't know why!  hope to find clues on this board that will help me feel better. 

The little baby is my granddaughter, Emma. I'm lucky to be able to know her!

thank you again!

PonyWave

You look very young, I

You look very young, I thought this little cutie pie was your child, good for you

Forough

PonyWave

foroughsh said:

You look very young, I

You look very young, I thought this little cutie pie was your child, good for you

Forough

Thank you! I appreciate it

Thank you! I appreciate it because sometimes you don't feel like yourself anymore!