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Cancer Update Page
For those of you who have been following my cancer journey, I have added this page to my website so you can keep up with what's going on with me and my illness:
For those of you that may not know, a scan the last week of May 2014 showed that my cancer has became active again after my stem cell transplant failed. This follows 18 months of being cancer free. This is the same Hodgkin's Lymphoma. The scan found new activity in lymph nodes in my pelvis and neck. I visited my oncologist at Vanderbilt who suggested that I go back on chemo with a new drug called Treanda. I started back on chemo with this drug the first week of July 2014. They have me scheduled for 6 rounds, and another possible stem cell transplant.
AUGUST 28 2014
A CT scan showed very good response to the new chemo drug Treanda. Oncologist very pleased with results. He wan't to do 4 more rounds with this new medicine to try and totally knock it on out. This new drug isn't as hard on me as the chemo drugs I had in 2011. I also get a longer break between rounds. I get 28 days off between each round. Last time it was only 2 weeks. This gives me more recovery time.
OCTOBER 5 2014
Had round 4 of Treanda. I'm doing well considering that I'm on chemo. The low blood counts hit about 10 days after I get this med. Those are the days that it's pretty hard to get around because of weakness and shortness of breath. This is all because of the oxygen carrying blood cells being destroyed by the chemo. Chemo can't distinguish between healthy and cancerous cells, so it destroys them all. Your bone marrow replaces the healthy cells. Still playing music as much as I can, but avoiding the long trips. I went to the IBMA in Raleigh the last few days, and it was physically hard getting around. I'm trying my best not to over do it, but at the same time trying to keep living my life as much as I can.
OCTOBER 27 2014
Heading out next week for a cruise to The Caribbean. I will start round 5 of chemo as soon as I return. I'm doing pretty good. I have alot of weakness, but I try just to get as much rest as I can. At the same time, I am staying busier than ever musically. I'm starting to get alot of numbness in my feet and hands (which are a side effect of this chemo). Hoping this won't last, but I know some of it will. Hand numbness isn't good for a musician, but you've got to do what you've got to do to get better.
NOVEMBER 13 2014
I just completed round 5 of my new chemo today. This new drug called "Treanda" is a 2-day process. I was hoping this might be my last chemo, but my oncologist told me today he wants me to get in 1 more round (a total of 6) and then have a PET scan followed by a followup to my Vanderbilt oncologist Dr. Nishita Reddy. Dr Reddy was planning another Stem Cell transplant for me, but I'm hoping my scan will show really good results where I won't have to have this proceedure again. It was very hard on me the first time, but I knew coming in that recovering from cancer wasn't going to be an easy road. I think I am very close to having this behind me. The Treanda has caused me quite a bit of hand numbness, but I feel that will go away. I'm hoping so due to my profession. Doing really well so far after this round. I will be going back in tomorrow afternoon to receive a injection of a drug called "Neulasta". This drug helps to rebuild white blood cells after damage from the chemo. White blood cells (or WBCs) are needed to fight infection. In cancer, most of the time it is infection that kills you (due to low immunity) rather than the cancer. Anyway.....overall, a good day. Thanks for coming over and checking on me.
CANCER TIP: If you use (or know anyone getting) Neulasta, it can cause severe bone cramps. This is because it stimulates bone marrow to produce white blood cells. You can take the over the counter (OTC) medicine called Claritin 24hr. Start this the day BEFORE your Neulasta injection. Continue for 3-4 more days. It will minimize the bone cramps quite a bit. This was suggested to me by my oncologist. I have done this for about 2 years now, and it really helps !
NOVEMBER 17 2014
This 5th round of chemo has really kicked my butt hard. Still trying to get out of the fog, but still breathing and walking around. Guess I'm gonna make it. Just gonna be a little slower this time......I can still jump just as high as I always have. I just can't stay up as long :)
DECEMBER 9 2014
Going in tomorrow to start round 6 of chemo. Not felt very good the last couple of weeks. Think I must have picked up a virus or something. I usually have at least 10 days per cycle that I feel OK, but this time I haven't. There's a good chance this could be my last chemo. I will be having a PET scan sometime in January to see how my cancer is doing. I'm really feeling positive about the scan. I no longer have any of the symptoms associated with Hodgkin's Lymphoma, so I am hoping this is a good sign. It would certainly be a great way to start off 2015. Please continue to keep me and my family in your prayers.
DECEMBER 10 2014
Started my 6th round of chemo today. I had a treatment today, and 1 tomorrow which will finish up the 6th round. I have a PET scan scheduled for January 2, 2015. My oncologist wants to wait and get the results from that before final plans are made. My oncologist (Dr Bruce Avery) is retiring, so I will sign on with Saji Eapen. Dr Eapen is a great doctor who has followed me through my cancer ordeal. He is very familiar with my case. Gonna miss Dr Avery. He has been very good to me. A great man !
JANUARY 5 2015
Just had my PET Scan this morning, and I am very proud to say that the scan showed that I am 100% cancer free ! I've been waiting for a completely clear scan for 4 years. Even after my stem cell transplant on 9/10/12, I still had some abnormal lymph nodes that never went away. This scan shows they are TOTALLY gone !! Thanks for all the prayers and support. I have a follow up at Vanderbilt next month to see if they suggest any further treatment for me. Ready to get well !!
FEBRUARY 11 2015
Back from Vanderbilt today. My Oncologist is very pleased with my scan. She told us that this is the best result she has ever had with any of her patients that have used this drug "Treanda". I had 6 rounds of this. She was very pleased. I was told that another stem cell transplant may still lie in my future, but for now she is choosing to monitor me with PET Scans every 4 months, and treat me accordingly. Hoping the scans will continue to stay clear. Just not looking forward to having to go through another stem cell transplant. I was told this one will be much rougher than my last one...As for now, I'm just taking a day at a time. As long as these scans stay clear, I think I can avoid another transplant. Please continue to keep me and my family in prayers....
JULY 9 2015
Results from PET scan and biopsy show that my Hodgkin's Lymphoma has returned. PET scan showed suspicious areas on right side of my neck, a place near my pancreas, and a place behind my lung. Biopsy of my neck lymph node yesterday shows return of this cancer. Will be heading back to Vanderbilt on July 15th to see what new plan my oncologist may have for me. This is my 3rd time battling this. Hoping this time will be the last, and I will again be a survivor. We can certainly use your prayers.
SEPTEMBER 2 2015
After taking time to visit France, and also take a vacation to Clearwater, FL in August, I have entered cancer treatment for my 3rd time. This time I will be getting all my treatment at Vanderbilt in Nashville, TN. I have an awesome oncologist there named Dr. Reddy. She suggested that the best option for me at this point would be to enter a clinical trials program where I can receive treatment that hasn't yet been approved by the FDA. I was chosen for one of the 4 remaining spots in this clinical trial. I was very lucky to get in. Today I received my first dose of Nivolumab, which is a non-chemo drug. It is a new class of drug that has been working great on lung cancer. As a matter of fact, President Jimmy Carter is currently on this drug. Scientists seem to think it will work well on lymphoma, so I am very optimistic. I will receive infusions 2 times per month at Vanderbilt for the rest of my life. I will continue on this medicine even after I reach remission (if that happens). Lot's of prayers have been answered.
MARCH 4 2016
Just had my PET and CT scan on March 2. Scan is completely clear. Cancer has been gone since late October 2015. Dr Reddy is keeping me on a maintenance dose until my clinical trial is complete in late August 2016. I'm a little over 1/2 way through and doing well. Thanks for all the prayers !!
AUGUST 30 2016
It looks like I finally have the finish line in site. My clinical trial at Vanderbilt will end on October 27th 2016. I will be monitored with scans from there on out, but no more treatments unless there is a recurrence. I have responded well to this drug called Nivolumab. I have been cancer free for nearly a year now. October 27th will also mark 1 year of being in remission. Excited to get back to a normal life !
OCTOBER 13, 2016
Had a great visit yesterday at Vanderbilt. Everything is going great. Had infusion yesterday. I only have 1 more infusion left on October 24th, and I will be done with the clinical trial, and all infusions. After 5 1/2 years, I am ready to return to life. Only 10 more days !
OCTOBER 17, 2017
Back from Vanderbilt. Today's scan was excellent. No further signs of cancer. In total remission for 2 years now !
AUGUST 10, 2019
Well, in June of 2019 I was admitted to The University Of Tennessee Medical Center with a diagnosis of Pneumonia, E-Coli, Sepsis ans Shingles. While in the hospital, it was found out that my cancer had returned. I had last been sent into remission the 4th time with the clinical trial drug Nivolumab. Very strange, but 2 weeks before I was admitted to UT, a new cancer doctor became employed there. His name was Dr Ramchandren. His specialty was Hodgkin's Lymphoma. I also found out that he was one of the doctors responsible for the development of the drug Nivolumab that I had been on in clinical trials. This drug had since been released to be used on many cancers. It was now known as Opdivo. Dr Ramchandren had also found the drug required a maintenance dose to be effective. I was very sick at this time, and was not sure if I would make it this time. Upon release from the hospital, I could only walk using a walker, and it was a struggle trying to even walk with that. Dr Ramchandren wasted no time getting me back on the Opdivo. After 3 monthly doses, I was back in remission. A 5-time survivor!!! As of December 2019, I am still clear and getting around very good on my own. Back to driving and totally clear of the Pneumonia, E-Coli, Sepsis and Shingles. Still 100% clear of cancer, and now on monthly maintenance doses. Once again I was well and doing good. God still has plans for me, and I know without a doubt he put everything in place. What was the odds of Dr Ramchandren coming to UT to work only 2 weeks before I was admitted. This being the same doctor that helped to develop the drug the saved my life during clinical trials? It was not just coincidence that this all came together...
MARCH 15, 2020
Everything seems to be going well with my cancer. I have been on a regular maintenance dose monthly since August. Everything seems to be pretty stable. My cornea transplant from a couple years back was rejected, and eventually died. Plans are to get a new one on March 31st (my 58th birthday). Sight will be a great birthday present I think !! PET Scan coming up on March 17th (This upcoming Tuesday).
MAY 31, 2020
Well, my cancer is still in remission, but due to the harsh chemo drugs that I had take initially, I am now in kidney failure. Looks like I will be starting dialysis soon. Hoping one day to find a kidney donor and I can get a transplant. It seems like its always something. Me and my family can certainly use your prayers during this time. Due to the COVID19, my corneal transplant was put on hold until later in June. Hopefully I will get my site back in my left eye.
JULY 25, 2020
I guess I am a little late here, but had alot going on. I started dialysis on June 16th 2020, and had my corneal transplant for my eye a week later on June 23 2020. My vision is starting to return to my left eye after nearly 4 years of being bling in that eye. I am doing better being on dialysis, but it has been hard on me with everything else going on medically. I have a temporary port for my dialysis, but will be going back soon for a permanent fistula. Seems like I live in the hospital these days. My cancer is still in remission, so this is all a few good things I guess. Hoping everyone stays safe during this Covid19. Please wear a mask. If not for yourself, do it for others like me with a weak immune system.