Saw my Lung Doctor Today

I saw my lung doctor after school today.  Turns out, I was not supposed to stop taking steroids last month.  I was supposed to continue taking them until I saw him today.  I told him that i never want to be on steroids again.  There are other drugs that I could take if needed to.  He checked my blood work that was done on Valentine's Day.  My calcium is 8.8, my creantin is in the normal range.  My kidney function is normal.

   This Wednesday afternoon, I will be getting an ultrasound on my left leg.  My left leg has been swollen, along with the foot.  When my feet swell, they hurt.  I do not know why my left foot and leg is swollen.

 This Friday, I am going to get a PET/CT scan to check on my lymph nodes.

Withdrawal

Monday, (MLK Day) was day 90 for the steroids.  That was the last day I took steroids.  Since then, my body has been going through withdrawal.  I've been having all day headaches, and my head hurts.  The headache is really painful early in the morning.  The early morning one has been like an Interferon headache.  My neck has also been hurting as well.  These headaches have not been fun.

Check up with Oncologist

  I saw my oncologist this morning.  My bp was good, and since December 26, I have gained 9 pounds.  I have until February 24, to loose that weight.  I was doing really good staying within a 4 pound range while on the steroids.  I have had more energy the last three weeks, compared to how I was the previous 6 -7 weeks before then. 
   I will be done with the steroids on Monday!  Yeah!  I was originally scheduled to see my lung doctor on Monday, but that appointment has been cancelled and rescheduled twice.  I am now scheduled to see him on Monday, February 24. Will see if that stays or gets rescheduled.  My oncologist is allowing my lung doctor to schedule my next CT scan. 
   I am scheduled to see my oncologist 8 days before my birthday.  So, if this scan comes back clean, then I will go a year after July's visit before I see my oncologist.  After next month's port flush and blood work, I will start going about 6 weeks in between port flushes.  I don't do that now, but will start doing that. 

Lesson Learned

  Back in the spring, I decided to severely cut back on my chocolate and candy intake.  I still kept my Mike & Ikes in my purse, for meetings and other times when I did a lot of yawning.   There have been times this fall, where I did not eat much because of being sick.  Last week, I started taking steroids for my sarcoid.  For  a week now, I've noticed how much energy I've had.  (Still having issues sleeping, though.)   I've also been wanting to just eat this past week, which has been due to the steroids. 

   Dad came home with some snack size Snickers and Reese Peanut Butter Cups, since they were on sale.  I ate too many last night after supper, and went into a major sugar crash.  I felt weird,  was in bed by 10:30.  I had that feeling for a few hours.  That has never happened before, and I will never do that again. 

Saw my Lung Doctor Today

  I've had so much blood drawn this month!  The second time this month, was for seeing my lung doctor today, to have my ACE levels checked.  This is down.  My calcium level has been going up all year.  January it was 9, in July 10.1, and earlier this month, it was 12.4.  I had a PET/CT scan in August just before the start of the school year.  Here are the results from that: the lymph nodes in my abdomen are better (the swelling have decreased), the lymph nodes are still swollen in under both of my arm pits and in my left groin area, and my spleen is bigger than it was  in February.   I have been getting headaches off an on since June.  I have been told to keep track of them, because people can have neurosarcoid.  I do not have any other symptoms for neurosarcoid.  He was debating on scheduling me to have an MRI on my head/brain.  As of now, I am not getting an MRI.

  I will be taking predisone for three months.  I will see this doctor on Martin Luther King Jr. day.  At that time, will talk about some kind of scan, because that is the best way to see if there are changes or not.  I am hoping that the side effects are not that bad.  One of the major side effects is gaining weight.  I have lost some weight, and do not want to gain a lot of it.

  I had to get a flu shot this afternoon, because of going on steroids.

Today's visit with the Lung Doctor

  I had an appointment with my lung doctor this morning.  I had a blood test in 2011 to check my ACE levels (lets you know about sarcoid) and it was less than 3.  I had it done back in March of this year and it was 63.  It is on the high end of normal.  I had blood drawn this morning via my veins to check my ACE levels again.  I will have this test done again in October. 

   He said my platelets being a little low could be because of my spleen being bigger.  But, he doesn't know for sure.  It is hard to know what to do, should we treat my sarcoid, or continue to wait.  With being a survivor of Melanoma, that is what is making it hard.  I've had surgery twice to see if it was back, but it was just the sarcoid causing the problems.  For now, we are going to wait. 

  I will be having a PET/CT scan or just a CT scan in the next three months.  depending on what that shows, will determine if we decide to treat my sarcoid or continue to wait.  So far, I do not have to go on steroids!  Yeah! In three months that might change.

Last Week's CT Scan's Results

  Last Friday, June 28, I had a CT scan.  I saw my oncologist this morning.  Lymph nodes and lung nodules are still they same.  They haven't shrunk or gotten bigger.  My spleen has gotten bigger.  As of now, I have a PET/CT scan scheduled for next Wednesday.  That can be cancelled due to my insurance.  My oncologist will tell them there are new symptoms due to my spleen. If the PET/CT scan is cancelled or comes up inconclusive, I will have another CT scan in October.

  My oncologist does not want to do another biopsy.  If he tries to biopsy my spleen, there will be a lot of bleeding.  The problem with this is, is that I have sarcoid.  With sarcoid symptoms (when it is active), it makes it look like the melanoma is back.  Sarcoid and Melanoma have the same symptoms. Sarcoid is an autoimmune disease and I will have it for  life.

  In three weeks, I see my lung doctor, and I will find out then, if I have to start taking steroids.  If I do, steroids are supposed to shrink the lymph nodes.  I do not want to start taking steroids, because of the side effects.