June 30, 2012

Home again

I was released from the hospital late Monday afternoon. My procedure that morning went well. They removed almost 2 liters of fluid from my left lung. That's right....2 liters. No wonder I was having difficulty breathing! The fluid was sent to pathology to be tested. We have not yet received the results. The test will determine if there are cancer cells present. If so, that will mean the cancer has spread to my lung. If not present, it is caused by infection or pneumonia. I was on heavy duty antibiotics in case there is infection or pneumonia.

In addition to the blood clot on my shoulder, there are several blood clots on my left lung. I am on blood thinner to dissolve them. That means I am back to giving myself twice daily shots of Lovenox in the stomach.

Taking the slow release pain meds 3 times daily, instead of twice has made a huge difference. I am now taking 1 break thru pain med every 8 hours instead of 2 to 3 every 4 hours. We have a lot going on, but not having the pain is wonderful.

I am still experiencing edema in both legs and feet. It had all but gone away, but since I was in the hospital, the swelling is persistent. I am sleeping with my feet up and moving around much more, but taking intermittent breaks to try to relieve the swelling a bit.

We are planning to start chemo Monday morning. Instead of taking 1 large dose every 3 weeks, I will have a smaller dose once a week for 3 weeks and then have a week off. I am in good spirits and am hopeful that the chemo will shrink the cancer and enable us to resume a normal lifestyle once again.

June 24, 2012

Not quite going to make it to Monday....

Although we didn't plan to see the doctor until Monday...we didn't quite make it....

On Thursday l had a a few bouts of shortness of breath in addition to the continued swelling in my left arm. When we finally received a call back from the doctor's office late Friday afternoon, they asked us to go to the ER for a few blood tests and a chest x-ray. After waiting far too long in the reception area of the ER (4 hours) we were placed in an ER exam room. 7 more hours there, which included a blood draw, a visit from an ER doctor and a chest xray and 2 sonograms, we were admitted to a room. 11 hours from when we arrived to the ER....Yes, Mary and I walked into the room at 4:00AM.

My oncologist paid us a visit Saturday morning.He informed us that I do have a blood clot in my left shoulder. (This explains the swelling in my left arm). It also appears I have some small clots on my lungs. Additionally, I have fluid in the lining between my left lung and rib cage. It could be a growth of the cancer or the clot in my arm spreading further. The liquid will be drained on Monday and further tests will be run to determine the source. While we wait for Monday, I started on blood thinners and several antibiotics.

In either case, clot or further metastasis of the primary cancer, we agreed that starting chemo was something we need to start sooner rather than later. The chemo of choice will be Taxotere once again. Unlike when I had chemo in 2008, and received it once every three weeks, this time I will receive smaller doses, once a week for three weeks and then one week off. The intent of this regimen is that it will hopefully be less toxic, to better allow my body to recover in between doses.

We will continue to consider radiation as a way to relieve the pain.The pain meds have gotten the pain under control, so if we decide that taking chemo and radiation at the same time may be too much for me, we will forgo the radiation to get the chemo going to fight the cancer. For now, the clinical trials are on hold for the time being.

Thinking about the cancer spreading to my lung is clearly concerning. We continue to stay positive and keep the hope alive that we can get this pc demon in my body under control and that we will be able to resume to some semblance of normalcy.

June 19, 2012

That's a lot of 'ologists'!

On Monday I had my monthly Oncology appointment which included two shots, blood work and a brief meeting with the doctor. Due to my increased pain, which was becoming paralyzing, we wanted to talk further with the doctor to discuss treatment options and to develop a new plan of attack for these persistent PC cells that seem to be taking over my body. We went back today and talked with him about the treatments out there and a longer term plan.

Dr. V increased my pain meds and changed the steroid I am taking. I noticed changes for the better from both. I slept much better last night and overall, the pain decreased.

A bone scan was ordered and is scheduled for tomorrow afternoon. The primary objective of the scan is to identify tumors that would be considered 'hot spots'. They may be the main source of my pain and could be targeted with radiation. Consequently, once my oncologist receives the scan results, he will talk with my Radiation Oncologist. We will meet with the RO on Tuesday morning to find out if he thinks there is a radiation therapy that may alleviate my pain. We also discussed chemotherapy and the two early access trials I mentioned here last week. In order to receive the treatments in early access, I would have to be approved and of course, both would involve travel as well. In order to consider treatments with travel, I will have to first get my pain under control. Having spent seven consecutive days in bed, it was all I could do this week just to get to the KU cancer center.

For now we won't look too far ahead. We are praying the new doses of pain medicine will continue to counter my pain. On Monday we will head back to the cancer center to discuss the bone scan results with the oncologist and will also have a follow up consult with the surgeon who  performed my surgery in May.

That is all for now. We are taking things one day at a time.Thank you for your past and continued prayers. It really helps to know we have all the support that we do!!

June 12, 2012

An overdue update

I'm sure you have all realized the frequency of my posts has dropped considerably. A few of you have written to express your concern. I appreciate all your comments. No worries...I'm still here, but the battle and how we fight it have both changed considerably.  The pain and amount of pain meds that I must take to manage the pain has increased significantly. Unfortunately, a side effect of the pain meds is that I am frequently groggy and I guess less creative. Both lead to fewer posts.

Next Monday we go to see the doctor for my monthly shots. We are planning to have a discussion about my current state and see if there is something I can change. Perhaps a few short doses of radiation would alleviate the pain and then I would not require such a high dose of pain medication. Another option may be to pursue the expanded access program  for Alpharadin. Currently, the closest active site is St. Louis, which would be a quick four hour drive from here. Chemo remains an option as well and will also be considered. The main thing I am looking for is pain relief as quickly as possible, while not jeopardizing my eligibility for other trials in the future.
MDV3100 is still on the horizon!
I promise to provide a more timely update after our appointment on Monday.

Please understand that I'm still here, battling everyday, and still determined to not succumb to this hideous disease, but I am just a little distracted by some of the ugly aspects of this disease.