Tuesday, July 29, 2014

Dancing with NED

Take a look at this. Find the word IMPRESSION. Then read the words underneath.

It says "No Evidence of Metastatic Disease"! Can you believe it? I really was afraid I would never see those words. What a wonderful surprise.

The description of a vallecula cyst is not related to cancer, so nothing to worry about there.

This is the best report I have had since becoming stage IV. For now, I am (as described in Cancerland) Dancing with Ned.

The reality is there may still be some nodules hidden from view of this CAT scan. The good news is those nodules that had been previously detected have reduced in size to 2mm or smaller. Next time, they may reveal themselves. It would be so wonderful for those nodules to stay hidden or in fact be gone for good. That is obviously what I am hoping will happen. NED doesn't mean I will live longer than someone who has stable disease, though. Survival is directly related to how a person's cancer responds to treatment. 

Nevertheless, I like the way this sounds. TDM-1 has made me very happy indeed.

Friday, July 25, 2014

Scan Results

This morning I woke up early. I should have gone back to sleep but could not. Today was the day I was to receive a phone call that would deliver good news or bad news. The anxiety I felt was quite intense. I didn't realize how intense until I actually heard the radiologist's report of the scan I had on Thursday morning.

I spent quite a bit of my time recently trying to prepare myself for the good or the bad that I was going to hear whether I wanted to or not. The good would mean another 3 months of feeling so much like my old self. I tried to convince myself that it was going to be good news. Why wouldn't it be. I have been feeling so good. Even the breathing issues I had been experiencing which I thought were allergy related now seem to have been resolved. Perhaps it wasn't allergies after all. The bad news of course would mean I would be inching closer to the end. That possibility terrified me. Nevertheless I mentally calmed myself with the hope that the next treatment may work, and that all is not over yet.

I also tried to convince myself that the worst news had already been delivered to me in April of 2013. Today, though, I decided that is not exactly true. In April I still had a chance to prolong my life. When the available drugs have all been tried, your chance is over. With every drug failure, it means I am closer to the end of the list -- simply terrifying.

Just after 11:00 am my phone rang. I answered and took a deep breath. The words I heard sent my heart racing and my body shaking. The nurse said, "The news is GREAT!" That is all I needed to hear. On Monday I will get the rest of the report. Today I am so incredibly happy. I get to spend another 3 months loving my life. Wahoo!

The 30% Club

I have been a member of a metastatic breast cancer forum for several months now called Inspire. One day, not too long ago, a member had an idea to design and produce a t-shirt. That idea has come to life. I liked it, so I thought I would share. The design is on the right and comes on either a white or black shirt.

This t-shirt is to let people know that 30% of early-stage breast cancer patients eventually become stage IV. That means the cancer has spread to a distant site usually the bones, liver, lungs or brain. It is still breast cancer. The fact that three (3) out of ten (10) people eventually become stage IV even though it was first supposedly caught early is alarming. It shows that so much more research needs to be done.

Only 2% of research dollars are spent on metastatic breast cancer. That figure doesn't bother me as much as it does others, though I agree it does make us thirty-percenters feel like people believe we are just gonna die anyway so who cares. I believe any research done, whether on early-stagers or late-stagers, can be research that potentially will impact all patients.

But, I also understand there are differences in breast cancer where some a more likely to spread than others. This is one area where studying metastatic disease with only 2% of research dollars is disturbing. Plus, metastatic breast cancer kills. Early-stage breast cancer does not. That alone is reason to put more resources toward researching late-stage cancers.

I never encountered the 30% statistic until I became stage IV. I only heard about my possibly being cured in terms of time spent without a recurrence. I read and was told the first time I was diagnosed that if I made it 5 years without a recurrence I would most likely stay cancer free. I made it 4 1/2 years. At that time I was told that if I made it 3 years without a recurrence I would probably be fine. My time before a scan detected the distant recurrence was 2 1/2 years. The truth is no one is cured until they die very old of something else.Thirty percent means a lot of people are not making it to old age.

If you think you might like one of these t-shirts please visit the website below. Make sure they know you want the Inspire MBC (metastatic breast cancer) design.

Shirts come in Gildan and Hanes styles. Gildan is for the woman that likes a tighter fitting shirt.

Artwork is at Tiny Little Monster and they are ready to take orders. Tiny Little Monster is a small, woman-owned business. They are only opened during regular weekly business hours.

The colors are lavender, gray with a little pink and green.

Here is a link to the order forms. There is free shipping inside the US.

Nice job SuperSherrie and others from Inspire.

Now you are aware that 30% of early-stage breast cancers become metastatic. 

It's not as easily cured as a lot of people may think.



Tuesday, July 15, 2014

Never Mind Doc

Everything about my infusion last Monday, July 7th, went smoothly.  I saw the PA, and we discussed my two concerns. One, my acid reflux is back full force. It really can make my days miserable. She said I could up the dose of the current over-the-counter remedy that I have been taking. The statistics show that 9% of patients on TDM1 experience reflux. Since I have had this in the past, I can't say for sure my treatment is causing this, but I did not have this problem with the other treatment. On the 25th, I have an appointment with a gastroenterologist. Hopefully, he will be able to prescribe something to help relieve it. Second, I had her check two little red spots on my neck and one on my chest. Those spots were worrying me because, believe it or not, breast cancer can metastasize to the skin. The more I read the more I find this disease has no boundaries. The verdict for the red spots was not cancer, whew! What they are is still unclear. For now I am not going to worry about them.

On Thursday, I met a new oncologist. This doctor was to be a new member of my team, one that would be able to order the drugs necessary for my treatments in Wilmington. While speaking with him, I asked how often he does brain scans. His answer made me remember my understanding that insurance companies, not the doctor, make the decisions about what tests I can have and what drugs I can take. Most tests are only allowed when there are symptoms -- unless it is an approved age-related screening like a colonoscopy or a mammogram. Once you have been diagnosed with cancer it seems to me screenings for metastases should be mandatory, but they are not. That may be because of the desire to limit radiation exposure, or perhaps there just isn't enough money available from the insurance company to pay for additional diagnostics. Since my disease, the HER 2 neu kind, tends to metastasize to the brain more often than other types, it seems only logical to have brain scans at least yearly whether or not there are symptoms. Treating a small tumor usually has a more favorable outcome for length of survival than does treating a large or numerous tumors. But, no, finding cancer when it is small is not the goal, so no brain scan for me right now. Sure, I could make up some symptoms, but I don't want to do that.

After three hours of mostly waiting for my blood tests, CT scan, MUGA scan, and next infusion to be scheduled, I finally felt that I had accomplished the goal of changing treatments to a facility closer to home.

On Friday that all changed. The nurse from the new oncologist's office called and said, "Your insurance is terminating on August 1st. If your insurance is to continue under the same plan or if you change insurance companies, we will need your deductible paid in full prior to any treatments." Our insurance is being renewed -- thankfully -- but and it is a big BUT, our deductible is $10,000! Nope, that amount of money doesn't exist in any of my bank accounts right now. The hospital in Chapel Hill has never asked for a lump sum payment of our deductible. Instead, they set-up a payment plan which is allowing us to manage the huge amount of debt we incur each year I live. The final words the woman said to me before ending our phone call haunts me still. I said to her, "I guess I will have to continue treatments in Chapel Hill." She said, ". . . if they will take you back." Good grief, I am at the mercy of so many people.

Today is Tuesday, one week and one day after my infusion. I spoke with the nurse navigator in Chapel Hill yesterday, and my treatments can continue as usual. It is disappointing after the many weeks it has taken to try to be treated closer to home to have it all fall apart because of our inability to pay for the switch. At least, the up-side is my daughter will be attending UNC-Chapel Hill in the fall which means I will be able to see her every time I have an appointment. I am happy about that.

Next appointment, scans will be reviewed. NERVOUS