Time for Evaluation

During July, we increased the dose of Revlimid for a short period of time to see what impact there would be. It was also time to have new PET/CT scans run to make sure the chemotherapy was still working.

Calendar of Events

  1. July 4, 2013 – Increase Revlimid dose to approximately 25 mg for 7 days
  2. July 5, 2013 – Labs
  3. July 12, 2013 – PET/CT scans
  4. July 18, 2013 – Labs & Start Revlimid cycle #6 @ approximately 20 mg

Another Dose Increase

*****To increase the original dose to the next level, I had to purchase a 21 day supply of 5 mg capsules. The 5 mg dose was combinedAfter using them to increase step When my oncologist was ready to increase my dose of Revlimid from approximately 15 mg to approximately 20 mg it required ordering o tweak the dose of Revlimid I should be taking (remember because of my Epilepsy we started at a low dose and worked up)

With things going so well it was decided that I could try increasing the dose of Revlimid I had been taking from approximately 20 mg to 25 mg to see how it would impact me. When Dr. Reyes ordered the increase the first time I got smaller dose capsules so I could take the number of pills I needed to come up with the prescribed dosage. When that increase was done I still had 7 days of the smaller dose left so I asked if I could try that increased dose to see how it would work. This test dose was only for the last 7 days of cycle #5.

The increase from my perspective was that it really knocked me down. It was more difficult on me that I had anticipated. From my oncologist’s perspective it was decided that we had the correct dose at the approximately 20 mg and that’s the dose I would stay on.

Is Revlimid Working

On July 12, 2013, I had new PET-CT scans run so they could be compared to the previous scans that were run on February 28, 2013, to evaluate how things were going inside my body. The question that needed to be answered was: Is this Revlimid chemotherapy regimen I am on still working?

The results of the tests indicated that the cancer was not in remission, but the good news was that it was categorized as “stable disease.” This meant that the tumor was controlled and was no longer growing inside my body. The Revlimid regimen I had been taking since February was working!

Continue The Regimen

With the good news, I started cycle #6 of the Revlimid protocol.

It feels good to have a routine established that is working. It looks like I will be on the 28 day schedule for a while. Perhaps the next set of scans will show that the Revlimid has gotten the cancer in remission. I pray that it does.


It takes careful coordination between my oncologist and my neurologist to keep the medication I take for Epilepsy and the treatment regimens I take for the cancer in sync. I have routine office visits with my neurologist to monitor the way my cancer treatments affect me. And, if it’s necessary for my medications to be adjusted, both my oncologist and neurologist have to work together to keep everything under control.

******If there are any adjustments to my medications the entire picture must be evaluated to ensure one change doesn’t cause another change. For example if I continue to have seizures and my neurologist determines my medication has to be adjusted my oncologist has to be involved in the decision because my cancer treatment regimen may also require some changes.

When I started out on the Revlimid chemo regimen I did have some problems with seizures, but I was always able to link them to some event that I felt was responsible for them. I discussed the matter with my neurologist and learned that I needed to adjust the time of the day I was taking some of my medications. By doing that simple step, I was able to avoid making any changes to the doses I was on for the treatment of the cancer, or the Epilepsy.

Let’s go back to the way I was able to link an event to the seizures I had during the time we were navigating the territory to determine what my dose of the Revlimid should be. Perhaps the most difficult event that cause my problems was a lack of sleep.

The night before day one of the treatment regimen, and days one and two as I stared the new cycle, I had a difficult time sleeping. The day before was because I was anticipating the new cycle of treatments. And, days one and two, I had to take dexamethasone which kept me wired and unable to sleep soundly.

When my brain can’t get the sleep it needs to rejuvenate, like the three days I described when I start a new cycle of chemo, it’s not shy about getting my attention by triggering a seizure. In this case it was very easy to see a pattern. When I explained what I thought was going on to my oncologist, I was given a prescription for Atavan to use during the initial three days to help me sleep and hopefully prevent any additional seizures. It worked and I also worked very diligently at reducing the stress I carried in my mind.

Then, armed with that information, I had a routine appointment with my neurologist to check everything out. After I explained my experiences and the corrective action my oncologist had made we agreed that I could try this approach for a while to see how things played out. (I don’t like taking medication at all so I don’t jump at any opportunity to add more to the equation!)