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

hardo718 said:

Welcome Pony

Scary stuff.  Sometimes it's a very difficult task to find doctors who truly listen to their patients.  I was lucky in that regard.  But then I've worked in a hospital setting as a Respiratory Therapist for many years.  As with any other profession I suppose, reputations follow.  Happy to hear your latest diagnosis wasn't another bout with cancer.  Asthma is nothing to fool around with either tho and I'm happy that you finally got a med that seems to help you.  It's important to know what your triggers are, so you can avoid those things.  Do you have a Peak Flow Meter?  I would hope so, and that is a great tool to have on those days when you're not feeling your best.  Make sure you use it enough to know what your typical values are on the good days, so when you are having a not so good day, you'll know the difference between needing your meds or needing to be seen by your doctor in an office or an ER.

Best of luck,

Donna~

Hi Donna,

Thank you for your help! I'm not sure what a peak flow meter is so I'm sure I don't have one. I had to seek help from another pulmonist and he diagnosed my breathing problems as asthma. I think there were several times when I should've gone to the ER. It's hard to know what to do when there's such an extensive health history. I'm so much better now that I'm on Breo. Almost two months with no problems breathing!

Thank you again. I hope you have a wonderful day!

Pony

Footstomper said:

Lazy Lumps

I guess, If one must have tumours its probably best if its indolent and lazy.

Yes, for once lazy is good! 

APny said:

Welcome

What a relief it must have been to find out that it's asthma. I always joke (yeah, black humor works at times) that the stress and worry about all the checkups, symptoms, aches and pains, will kill me before anything else. I'm glad you found us and we're here for whatever you need to share. Wishing you the very best!

You are so right about that! and the killer drives to the hospital for checkups! I have to combat New York City and Philadelphia rush hours every time I go! A 2 1/2 drive takes at least 4 hours one way! 

Thank you for your kind wishes. Right back at you! 

Jojo61 said:

Welcome Pony!
So glad you

Welcome Pony!

So glad you found us, even though it has been quite a ride before you found us!

This is a great place to vent your concerns/fears, get support and learn from others' experiences. Wishing you continued good health.

Hugs

Jojo

Hi Jojo,

Thank you for welcoming me here!

One of the worst things about my experience was the sarcasm that I received from so many of the local doctors. My internist felt there was something going on and was sending me to the right specialists but they dropped the ball. The surgeon who ultimately diagnosed the cancer felt that it should have been found earlier. It was still caught early on though. I'm lucky that I had so many symptoms even if they were difficult to deal with.

I wish you good health as well. Have a wonderful day!

Pony

donna_lee said:

Cancer can be the pits

but glad you found the site.  I didn't jump in till about mid-way thru the previous 10 years, but I did participate in a live cancer support group every week.

Mine was Clear Cell RCC and was removed along with the organs it had infiltrated (right kidney, left half of liver, and set of nodes) and in 2 different nodes where it recurred during the 2nd and 3rd years out.  Thus far, I'm 7 years with NED.

There is something they can do for the Sarcoidosis as my husband was treated for it.  Sometime about 1995 he had a growth removed from the front of the tibia (lower leg bone).  The only thing they could say upon biopsy was that it looked like Sarcoid.  A few years later, we went to the optomotrist to get a new prescription for lenses, and was immediately referred to an ophtalmologist because his eye pressure was way over the roof.  He had sarcoid uveitis (inflammation in the middle layer of the eyeball and was put on prednisone.  It brought the inflammation and pressure down, but made him gain 40 pounds in 6 weeks.

It took nealy 2 years to get it under control; and then it returned about 2 years later.  He said no to prednisone and was sent to Casey Eye Clinic at Oregon Health Sciences University.  The specialist put him on Methotrexate, a cancer drug developed in the '70's that has been used for several other diseases.  It worked, cleared the eyes up, got ride of the small conglomerations of sarcoid in the lungs (which had been found on X-ray at the beginning of the Casey treatment), and hasn't had any evidence of return.  He still has to take glaucoma meds due to the damage caused over the years-he's 73-but this is just a suggestion for you to ask about.  Because the drug is toxic to the liver, he had to have regular blood work (quarterly), see the specialist quarterly and then every six months, and then every six months to a year as he tapered off the drug.  He still sees an opthalmologist locally every 4-5 months.

The sarcoid nodules could also be creating the asthma problems.

Good luck while you take care of your health needs.  Keep us posted.

donna_lee

Hello Donna_lee,

What amazes me and gives me hope is how well people are doing who have had far more extensive problems with kidney cancer than I have. I'm so new here that I'm still not quite sure what NED stands for but I at least know that it is good! And seven years is a long time to have such good results! Could you please tell me what NED stands for?

They found granulation in the lymph node biopsy that they did in 2013 and that's when my sarcoidosis was diagnosed. I'm being followed by a good optometrist who also doesn't want me on prednisone. I know about the weight gain while on prednisone and all the other side affects. 40 pounds in 6 weeks is so discouraging. I was gaining 10 pounds every six months. Finally I said enough since I was sure to develop more problems due to obesity! Plus I wasn't having sarcoidosis sypmtoms - Asthma was the culprit! I think I had All of the prednisone side effects and lost 20 pounds in 45 days after coming off of it.

Did the sarcoid in your husband's lungs look,like nodules on his X-rays? My latest ct scan said that two nodules have increased in size Since 2013. I'm afraid it's because I'm no longer on prednisone? My doctor wasn't hapay when I stopped taking it.  I was at 2.5 mm every day. It was a super low dose so I thought it Wouldn't hurt that much to stop taking it. maybe I was wrong!