[angiebaldy]

Not sure if I belong here but here goes

by angiebaldy on Mon Jul 09, 2012 5:37 pm

Hello everyone!

I haven't been diagnosed yet but I am now in the waiting stage which is excruciating!

For years I thought I had lupus and have been being treated as such ( since 1998). I recently started seeing a new rheumatologist in town because it was so difficult to travel almost 3 hrs away to my old one. He ran a whole panel of labs and when I went back for a follow up on June 28th he told me I had been misdiagnosed and did not have lupus. He told me that my blood work did have an abnormality and I would need to see a hematologist/oncologist because it is possible it could be in his words"lymphoma".

I was already established with a hematologist/oncologist because last year I was extremely anemic and had to receive IV iron for it. I saw him the next day and he told me that my SPEP showed a monoclonal pattern and that it could be nothing,but he could not ignore it and neede to run some more tests. My vitamin d was also low at 13.34 but my calcium was normal at 9.5. This didn't make sense to me but I am on prednisone every day for what I thought were lupus symptoms.

He ran some more blood work and I completed a 24 hr urine for BJP and light chains on July 4th. When I took my urine back to the office on the 5th I asked for a copy of my labs. They were not all back nor do I know exactly what he ordered. What I did see was that my IgA was 838 and my IgG was 575. I also had a dexa scan completed which was ordered by my rheumatologist prior to all of this on June 29 which was normal.

The waiting and wondering is driving me crazy! I know prednisone can suppress my immune system so of course I sit around wondering things like "Are these lab numbers true are could they actually be higher and the fact that I have been on 20mg of prednisone for many, many years falsely lower them? And if that is the case could I have had this for a long time and not known it and because I am tired of being on prednisone and started tapering myself off 5 and 1/2 months ago it now has started showing up?

I don't see the md until the 19th. Oh and by the way I didn't know it at the time but the day I saw my hematologist on the 28th was also his last day with the practice and he has moved out of state. If I had known that I would have started all of this with his partner who I will see on the 19th! This is also stressing me out!

Sorry this sounds so whiny but I just needed to vent and my husband is already stressed about it. I have not told the people I work with or my other family as I do not want to unduly upset them.


Thanks for listening and glad to see this site!


Angie

[Eric Hofacket]

Re: Not sure if I belong here but here goes

by Eric Hofacket on Wed Jul 11, 2012 10:42 am

I can remember last year waiting for labs when I was undergoing the process being initially diagnosed with multiple myeloma. I and others who have multiple myeloma understand how difficult this is and understand the stress you are going through. At my initial visit to my Oncologist he never mentioned multiple myeloma or any other possible ailment, I believe he was waiting for my labs and the bone marrow biopsy to come back for positive confirmation before he told me I had a disease such as multiple myeloma, which is the responsible thing to do. I would hate to put someone through the stress of telling them they had what is considered to be an incurable cancer then have to tell them latter after labs came back I was wrong. But I am pretty sure he knew within 15 seconds of looking at my initial blood work it was likely multiple myeloma. But with the labs results available to me on the internet as they came in before my next appointment, I was able to conclude that I had some kind of blood cancer before my next Oncologist appointment to go over the results. I never made that appointment, I had to go to the ER for kidney failure as a complication from multiple myeloma.
Hopefully it is not multiple myeloma you have and we never see another post from you or your next post is to say all is well, but if not like the rest of us did and still do you will likely be immersing yourself in a crash education in multiple myeloma and what may come next. If so, I have found this forum and website a good source of information on current treatments and progress in treating multiple myeloma, of which there has been a lot, and a great source of communication with others who have multiple myeloma and their experiences going through the treatment process. Keep in mind that there is a wide variation in how people respond to multiple myeloma treatment, it is rarely easy and some have a very difficult time but others respond well and have lengthy remissions. There really is no standard response to treatment and everyone is an individual. This is why I have learned that while this site can be a very useful resource, it is not a substitute for finding a good Oncologist/Hematologist you can have confidence in to make a treatment plan tailored for you. I make no unilateral health care decisions based on what I read on here without talking to my doctor first about it.

[antelope1225]

Re: Not sure if I belong here but here goes

by antelope1225 on Mon Jul 16, 2012 9:38 pm

Hi Angie.
I know what you are going through too. I had 3 years of worsening kidney function and went to a kidney doctor at the beginning of April. My kidney doctor told me he suspected Multiple Myeloma on my first visit but my husband thought we shouldn't let our imagination run wild. But I slept so poorly in April and May. How can you NOT be anxious? I was finally diagnosed with certainty on Memorial Day weekend.

I was already at stage 3 Multiple Myeloma and stage 4 kidney disease. It does feel like your world gets turned upside down. Such a shock. But time does help. I am on a heavy chemo schedule and shake like I have palsy. My face has swollen up and my hands and feet too. I have had to completely change how i eat to protect the 25 percent of kidneys i have left

But after 6 weeks on this I am not as self conscious or as full of grief. This forum has helped. Go to http://www.cancer.net too. Multiple Myeloma used to be 1-3 year life expectancy butt now is closer to 10 years- though Eric is right everyone is different.

Once my kidneys stabilize I will do the bone marrow transplant. But even that is radically different from 5 years ago. No more drilling into bones. Now they get stem cells from your blood!

I feel for you and will say a quick prayer for you right now.