Time to Research My Options
Now that I had specific information about the tumor that was invading my body I was ready to look at all of my options. In order to do that, my BMT oncologist referred me to other doctors so I could see what they had to say. During that time each doctor gave me their feedback and things very quickly filtered down to some obvious choices.
It’s Time to Consider a Change
There was a point in time after my transplant was completed and I had recovered from it that the BMT doctors were ready to send me back to my oncologist for continued care. However, both Dr. Kashyap and Dr. Skikne had moved to different positions which required me to locate an new oncologist.
At the time the BMT doctors were ready to send me back to my oncologist I had two other oncologist that Deborah and I were considering. But again, both of them had also moved during this time and weren’t available. It seemed like I should wait and see what options were available to me in the future. I hoped that a new oncologist would become available to take over my case. And, to make it easier for me to stay put in BMT, they had agreed to continue to care for my oncology needs. Everything went along very well until I was diagnosed with the fourth relapse.
The lesson I learned after this relapse was diagnosed is that BMT doctors look at their oncology patients from the “Transplant” perspective. And what I needed was an oncologist that looked at oncology patients from the “Disease Treatment” perspective. For example, what treatment options are available for me as a patient with non-Hodgkin’s lymphoma with no interest in doing another transplant?
The “Transplant” Perspective
Using the “Transplant” perspective” my BMT oncologist provided the following list of options for me to consider:
- Chemotherapy regimen called Bendamustine
- Allogenic Bone Marrow Transplant
- TRIAL: Chemotherapy called Inotuzumab
- TRIAL: Small molecule Bruton’s Tyrosine Kinase (Btk) Inhibitor & phosphatidylinositol 3-kinase (PI3K) inhibitor
The BMT oncologist recommended that I do the small molecule trial, but I didn’t want to travel out of town to participate in that trial.
Deborah and I asked additional questions to learn about some other possibilities. After I was sure I understood all of my options my doctor helped us create a list of things that I wanted to do. I left that appointment with the following list of things planned as my next steps :
- Place my name on the National Marrow Donor Program in search of a donor for an allogenic transplant (My BMT transplant coordinator would do this)
- Consult with a Radiation Oncologist to determine if radiation was an option (an appointment was made)
- Consult with a non-transplant oncologist that specializes in lymphoma (there was a new doctor available to see me so an appointment was made)
- National Marrow Donor Program – located 2 perfect matches
- Oncology Radiologist – I left this appointment confused. Was I a candidate for radiation or not? The answer I left with seemed to be “not.”
- Lymphoma specialist – Very positive and had several options for me to consider from the “Disease Treatment” perspective.(I found a new oncologist to take over my medical case.)
The “Disease Treatment” perspective
The oncologist I had an appointment with was Dr. Rubin Reyes and he didn’t waste any time helping Deborah and me understand his recommendations. We both agreed immediately to go forward with the doctor’s plan:
- Get a new baseline PET/CT scan (It had been 90 days since the last ones)
- Start me on a multifaceted treatment regimen that included Rituximab (Rituxan) and Radiation therapy (Dr. Reyes had talked with the Radiation Oncologist that I had consulted with earlier and got everything in place.)
- When the radiation therapy and Rituxan are completed new PET/CT scans will be done to evaluate the progress of this treatment regimen.
- If the new PET/CT scans come back showing progress, Dr. Rayes will start me on a chemotherapy regimen called Revlimid (which they call an “immunomodulatory agent” and an “antiangiogenic agent”). If the scans come back without any improvement Dr. Reyes would have provided other options for me. Luckily, I didn’t have to face that problem.
- Perform additional PET/CT scans at specified intervals to make sure the Revlimid protocol is working.
- The long-term goal is get the cancer in remission, or at least in stable condition, so I can go on a maintenance treatment regimen. There is no way to know how many chemo treatment cycles this will take. And the details of a maintenance treatment regimen will be determined when I am ready for it.
With all of the plans in place I will get started early the first week of December. It feels wonderful to have a new oncologist and to have a treatment plan in place. Next week promises to start a whirlwind in my life (and my beautiful bride’s life) but the outlook is very promising.
Pain Figures Into The Equation
Because of “my” initial decision, to take a wait and see approach, the tumor had continued to grow inside my body. Then, approximately three months later when the PET/CT scans were taken, the results indicated the tumor had grown so large that things could have very easily gotten totally out of control.
Because of the timeframe involved, I started to have pain on my left side in my lower back area. Before that I didn’t have any symptoms at all. The pain was caused because the tumor was involved with my psoas muscle. The pain got so intense that it forced me to take pain medication. I was very thankful that it was manageable.
Because of the pain I also had to get out of the water again. If I remember correctly in 2007, it was also in November that I had to quit swimming laps to start chemotherapy. This time, even though I attempted to keep going, the pain was so overwhelming that I didn’t have a choice, the gym membership had to go on hold until I could safely go back.
Remembering The Big Picture
Because of my experience as a cancer patient, and the way things had always expediently gotten done when they were needed, I didn’t even considered that it would take so long to get action after the results of the new PET/CT scans showed an aggressive tumor taking over new territory inside my body. I’m still awestruck when I think back on the schedule that played out during that time. Here, take a look:
- June 15, 2012 – My BMT doctor tells me that since my last PET/CT scans a tumor has started to grow and highly recommended surgery to obtain a biopsy. After some discussion I decided I wanted to wait three months and see how fast the tumor was growing.
- September 5, 2012 – My BMT doctor sent me for new PET/CT scans.
- September 14, 2012 – My BMT doctor sent me for a MRI.
- September 20, 2012 – My BMT doctor explained the MRI Results to Deborah and me.
- October 3, 2012 – Consult with the surgeon in preparation for a biopsy procedure.
- October 11, 2012 – Biopsy procedure performed
- October 24, 2012 – The surgeon reviews the biopsy results with Deborah and me.
- November 2, 2012 – My BMT doctor reviews the biopsy results with Deborah and me.
- November 9, 2012 – Consult with Radiation Oncologist to evaluate the possibility of using radiation to treat the tumor.
- November 21, 2012 – Consult with a non-transplant oncologist that specializes in lymphoma. (Dr. Reyes – My obvious choice: stay with him!)
- November 29, 2012 – First appointment as a patient with Dr. Reyes to go over a new treatment plan.
With all of that behind me, I was ecstatic to start working with Dr. Reyes and to finally start doing something to get the cancer under control again.
After getting a second opinion about the situation I was in, with an aggressive tumor growing inside my body, I was pleasantly pleased with the options Dr. Reyes gave me. It was a breath of fresh air to meet Dr. Reyes and his staff. They all really impressed both my beautiful bride and me. We agreed that a permanent change was in order. Dr. Reyes also agreed to take me as a patient and get started treating the cancer.
At the same time, Deborah and I agreed that I would no longer consider an allogeneic transplant. Our goal was to stay with Dr. Reyes and let him guide us through my new treatment regimen and/or make any changes that might be needed. The reasoning behind our decision (ultimately mine) was:
- I had already had a lot of chemotherapy regimens,
- I had never really seemed to overcome the issues that were caused by the autologous stem cell transplant,
- My age,
- The new treatment regimens that were now available to control non-Hodgkin’s lymphoma.
- In the back of my mind I was also very seriously considering quality of life issues.
When Deborah and I got to meet Dr. Reyes the first time he walked into the exam room and it became very clear that he had carefully reviewed my case and had formulated a plan that was suited for me and my medical case at this point in time. He also had other options that he wanted us to know about so we didn’t feel like this was all I had available at this time.
To start with he wanted to show me my PET-CT scan results (Pictures not reports). Then, as he described what he considered to be our best options, he said a word that really stuck out to Deborah. That was because several years back Dr. Skikne had told Debbie about that word, “Revlimid.”
When Dr. Skikne told Debbie about the chemotherapy agent called Revlimid it wasn’t available at the time, but he knew it was getting close. Guess what Dr. Reyes wanted to use? This really got both of our attention; it was like God was leading us to the right place at the right time with the right solution waiting there for us. Something we are used to have happen in our lives.
Another Possibility — Hospice
One of the medical professionals I have worked with over the years highly recommended that I consider getting Hospice in the picture early on. The explanation for this seemingly unrealistic recommendation was that just in case things don’t work out the way I wanted them to, I would have help in place to make things easier.
I have this information in the back of my mind, but even though I focused on “quality of life” at this stage in the game, I’m moving forward with my new doctor and our new plans. My choice is to stay focused on the new lessons I have had the privilege to learn, and the opportunities I will have to help other people during this time in my life.
My Mind Can Be My Worst Enemy
Recently, I have thought long and hard about my life being consumed with the word cancer. That word seems to be in front of me all of the time anymore. And I live with it each and every day of my life. If it’s not something going on with me, I hear about someone else’s plight with cancer.
I have to make certain that I keep my mind focused on my glass being full and running over – not half empty! I am a long-term cancer survivor who has had so many unbelievable things happen in my life, many of which other people can only dream about. And only God gets the credit for that. I am very blessed! So I need to keep the correct perspective and attitude.
Do you remember me mentioning quality of life issues earlier? I’ve had to consider other people who I know are in different situations but have the same quality of life matter to deal with. I wonder if, they too, would choose to end their situation if that was an option for them.
Perhaps, as cancer patients are often told, I will have to make that decision one day. But for now I am staying with the people who I think about when quality of life comes to my mind: Two in particular who are quadriplegic really come to mind.