Finally Got an MRI Scheduled

So I ended up having to contact my local oncologist, get MD Anderson to send over the CT Results and what the MDA oncologist thought was going on, then wait for the local oncologist to look it over, but I finally have an appointment for an MRI this afternoon.  I'm really hoping that the tumor on my spinal cord isn't pushing on anything... I guess I'll know soon.

Never Going Back Again

♬♬Been down one time, Been down two time, Never going back again ♬♬

I was planning to go down to the ER after work to get the MRI done that my oncologist told me to go to the ER to get, but I ended up having to go earlier because I was having chest pains and extremely short of breath for about an hour or two. So, I listened to everyone telling me to go and I had my mother take me to the ER - and I'm never going back, again!

When I got there,they got me back quickly, and did an EKG.  The EKG did not show anything, so they put me in a room and left us for several hours.  Eventually, a doctor came in and I explained the current issue with the chest pain and breathing difficulty (which by this time was no longer a problem because it had been several hours) and I also told him about what my oncologist had asked me to go to the ER for (the cervical spine tumor that is probably pushing on a nerve that has the potential to cause paralysis).  

In Limbo Again

The trip down to MD Anderson turned out to give all bad news.  The scans I did on Thursday show progression in the liver which disqualifies me for the trial.  It also means that the current hormonal therapies I'm using are not doing the job on their own.

While I was there, I mentioned the pain I have been having in my shoulder and upper back.  My oncologist thinks this pain is most likely caused by a tumor in cervical spine (C5 to be exact) pushing on a nerve.  If this is the case, it is something I have to have treated immediately as it could lead to paralysis.  He actually wanted me to go to the ER that day to get an MRI, but since I was in Houston and had a full weekend planned, I opted to wait until I got home. I'll probably go up there tomorrow after work or something (as long as none of the warning signs occur - which would mean I'd have to go immediately).

MDA Change and Cancerversity

I called over to the breast center at MD Anderson and told them about the possible progression.  A little while later I got a call back saying they were moving my scans up to June 5th, with doctors visit on June 6th (they were originally scheduled for June 24th).   I hope me and the local oncologist are wrong and the scans show something different, but my gut feeling and the symptoms make me doubt the scan will disagree.

June 4th is my cancerversity, or the date I was originally diagnosed with cancer.  It's amazing to believe I've been living with this disease for 5 years now.  And even more amazing, to think I may be living with it for the rest of my life.

If you are using a computer to access my blog, you should see the new count up widget I added, below the "about me" section, which shows the time that has progressed since my initial diagnosis in 2009.

Here's a link to my original post when I started this blog on June 5, 2009:

http://aymzbc.blogspot.com/2009_06_05_archive.html

Last few weeks

These last few weeks I've been in pain.  My shoulders and back have been hurting again.  I went in today for my checkup and treatment.  I had a feeling I was progressing, rather than responding, to the endocrine therapy I was on, so I mentioned this today.  The doctor compared it to what she had measured last time, and said it does appear to have grown.  She recommended I call MD Anderson and let them know.  I guess I have no choice.  I really do not want them to find progression, because it disqualifies me for the trial.  It's also one less treatment option for me. 

They are making me go into work tomorrow at 5am, so I guess I'll make the call after work and see what they want me to do.  It's going to be a REALLY long day tomorrow.

Opinion: 30 percent for 30 percent

The article below was salvaged from the wayback time machine while I was reading through a blog that had been shut down.  The author either moved on or died, you never exactly know with mets patients.  Either way, the article is excellent and really goes into some detail on the lack of funding and research done for metastatic breast cancer. 

Opinion: 30 percent for 30 percent

By C.J. (Dian) M. Corneliussen-James

The most devastating and feared breast cancer is metastatic (stage IV) breast cancer. This occurs when breast cancer spreads to distant, non-adjacent parts of the body.  It strikes 30 percent of breast cancer patients and is fatal, taking lives on average within two to four years of diagnosis.

Results from Baseline Scans Done on 4/13

Well, the results from the new set of baseline ct scans I mentioned in a previous post have finally showed up on the my.MDAnderson.org website.  The scans were done to establish a new baseline set of scans to compare to another set I will do in June. The goal is to show that my disease is stable, rather than progressing, so I can qualify for the immunotherapy vaccine trial that I was previously disqualified from.

Joined Cancer Support Community

Recently, I found a cancer support non-profit group called Cancer Support Community online that had a lot of great resources.  They offer support groups, activities, and workshops with experts who come in and give hands on talks and give out free information and items.  They have family activities, care giver support groups, and some of them have children and teen groups.  The also offer some rather unique items I have not seen in other places like the Open to Options resource below.  I also posted a link the other day showing some free books you could order.

Annual Conference for Women Living With Metastatic Breast Cancer

Jesse and I are going to the Annual Conference for Women Living With Metastatic Breast Cancer in Philadelphia this weekend.  We qualified for a travel grant which provides us with reimbursement for airfare and hotel costs.  I'm looking forward to the workshops, speakers, vendors, and most importantly, the new friendships.  Here is some information on the conference and the types of topics covered: 

http://www.lbbc.org/Events/Metastatic-Breast-Cancer-Conference/2014-04-26-Metastatic-Breast-Cancer-Conference

Second Chances

I was down in Houston at MD Anderson Friday and I got some good news.  I was told that I would have a second chance to meet the qualifications of the vaccine trial I was interested in previously.  My oncologist at MD Anderson managed to argue that the original baseline scans were not done at MD Anderson, therefore; they did not count.  So a new set of scans will need to be taken as a base line and then 3 months later a second set of scans will be taken to see if the disease has progressed.

They currently have me on the Lupron, the Femera, and XGeva (I believe they are going to approve it, but will find out for sure tomorrow).  This is an attempt to starve my estrogen fed tumors.  I like being off the chemo and am hoping this works for a while.  I did get about 4 years out of Tamoxifen, so maybe I'll get a few out of this one.  When they do the trial, they will just add the vaccine on top of these drugs.