Last month, one of our readers suggested I feature stories about “older” myeloma patients. Does 73 years young qualify?
In response, regular reader, Jim Turentine, submitted this biographical summary of his myeloma experience.
Jim has been through a lot in less than a year! But it sounds like he isn’t letting any of it get him down…
My Experience With Multiple Myeloma
I was diagnosed in June of 2011 (6 days before my 73rd birthday) with stage 2 or 3 (not sure which in Durie Salmon staging). I had multiple lesions on my back causing severe pain. I was sent from Florida Hospital Waterman (FHW,Tavares, FL ) to Orlando for possible back surgery since one lesion was dangerously close to the spinal cord.
After CT scans, MRI’s, bone marrow biopsy and x-rays the diagnosis was made of Multiple Myeloma (I had no clue what this was but the Dr. informed me it was an incurable cancer – wow what a birthday present!). The surgeon there decided the lesions could be reduced by radiation so I returned to FHW for the radiation.
My family Dr. (Kurt Wagner of Eustis and Radiology Oncologist – Robert Purdon of FHW) suggested oncologist Dr. Maen Hussein of Florida Cancer Specialist (FCS at the FHW location) for chemotherapy. Dr. Hussein performed a Bone Marrow Biopsy (BMP) and several special blood tests for myeloma markers. All showed I had IGA Lambda Multiple Myeloma. The Fluorescence In-Situ Hybridization (FISH) test indicated deletion of 13q14 (Chromosome?) and I was positive for t(4;14) translocation. Both of these tests indicate I have “poor prognostic factors for progression free and overall survival.”
In other words the Dr’s say I have “High Risk Myeloma.”
I started on chemo July 18th while undergoing radiation for the lesions. The chemo was velcade (or Bortezimib) 2.6 mg hydrolized,etc,etc twice a week infusion in conjunction with 40 mg Dexamethasone days 1 thru 4 for three weeks then 1 week off. Fairly standard therapy I was to find out after researching myeloma and therapies for initial treatment. The periodic blood tests showed I was responding well and achieved what appeared to be Complete Remission (CR) by November. Meanwhile Dr Hussein had made an appointment for me to see Dr. Alsina at Moffitt Cancer Center in Tampa for evaluation of a possible Stem Cell Transplant (SCT). Dr. Hussein also started me on the bone strengthener Zometa every 4 weeks.
I had my appointment with Dr. Alsina on September 29th. Dr. Alsina did not think a SCT was in my best interest at that time (I figured it was because I was too old). Both my wife and I (and also Dr. Hussein – I think) were competely surprised by this decision. Dr. Alsina suggested continued maintenance with Velcade therapy maybe with a reduced dose because I was starting to experience Peripheral Neuropathy (PN) in my ankles and feet.
In November I went on a reduced (1 per week infusion still at 2.6 and reduced Dex 20 mg only on infusion days). The day after Thanksgiving we were driving back from Tallahassee, FL when I experienced severe pain in my right pelvis. When we arrived home, I was unable to walk without a severe limp (and pain). I called my radiation oncologist and he scheduled an MRI for 12/08/2011.
Since September I had been experiencing severe back pain after being on my feet for more than 30 minutes at a time. A 11/08 MRI (spine only) showed 2 fractured vertebrae. On 12/06/2011, I underwent Kyphoplasty for the two fractures on T11 and T12. The MRI 0f 12/08 (pelvis only) found 3 lesions on my right pelvis and 2 lesions on my left pelvis. One of the lesions on the right pelvis was impinging on the nerve bundle at the sacroiliac evidently causing the walking problem. Radiation started on 12/14 (10 sessions). At this time I had to use a walker to get around.
By mid December my PN had increased significantly (usually late evening was the worst) and the only thing that would make it tolerable was Oxycodone (5mg tablets) which I hated to take but after the pain got to me in the late afternoon I really didn’t have much choice – besides I think my wife (Patricia) would have divorced me if I didn’t take the pill as needed. Speaking of Patricia – she is a Uterine (Leiomyosarcoma) and breast cancer survivor and an excellent caregiver. Everyone needs a caregiver–and she is the best!
At this point my M spike was undetectable, the B2M was about 1.25, IGA,IGG and IGM were all low, serum Kappa and serum Lambda were 6 and 5.4 respectively. All seemed good and I was ready for a break in this chemo routine so the 2nd week in January 2012 Dr. Hussein agreed I could stop everything but the Zometa infusions and we would keep a close eye on the once per month blood test results.
The PN was still pretty bad even with the 1 per week infusion of Velcade and it started to get better almost immediately after the infusions stopped (oops I forgot to mention I was on 300 mg Neurontin twice a day for the PN as well as Acyclovir because of the Velcade). I was also able to give up the walker around mid January but still walked with a limp and couldn’t walk very far (and still can’t). The blood test of Feb 8th showed serum lambda at 366 and B2M at 1.65. Both tests pointed to the fact that I had relapsed (and quite possibly was never in CR) (B2M was still in range but there was an upward trend from the last 3 tests). Dr. Hussein prescribed revlimid (Lenalidomide) and 40 mg Dex (1 per wk) and I started this on 28th of Feb and completed the first 21 day cycle March 19th. On the 21st of March my blood test results showed serum Lamda to have increased to 2183 with B2M up to 4.6. Everything else looked fine – no M spike,Igg,Iga,and Igm ok. Dr. Hussein agreed the Rev was not working for me so he changed the Chemo back to Velcade (SubQ this time since it had recently been approved) and added Doxil (infusion) along with 10 mg Dex on Velcade days. He then suggested I try for a clinical trial with Dr. Manish Patel of FCS in Sarasota, Fl. He made an appointment for me and after much soul searching and consultation with Dr.’s Hussein and Patel I agreed to become a part of the trial. I had to quit with the SubQ velcade and Doxil for 21 days prior to starting the trial chemo.
This is a phase 1 trial where they are determining the maximum dose for their drug. The experimental drug is IPI 145-02 and is an immunomodulatory drug (similar to Revlimid except I guess it is stronger) – at least that is what Dr’s Patel and Hussein told me after I had researched the drug and asked why they thought it would work when Rev didn’t.
I guess the drug is supposed to kick the immune system in the butt and tell it to get to work on killing the cancer cells. That is a very simplistic explanation and may be completely wrong so take it with a grain of salt.
I started the Trial on Wed May 9th and have had 8 doses so far. I take 35 mg twice a day. I am supposedly on the highest dose ever given to a human bean (ha) so I will be watched closely for side effects. The cyles are 28 days with no breaks in between. I take no other drugs (Dex, etc) in this trial. It will last for 6 months if I can tolerate the side effects and my myeloma markers do not get worse. That’s my story and I’m sticking to it!
More about me: I’m an Air Force veteran, 4 yrs active, 2 reserves. After my discharge I worked for Martin Marietta (4 yrs) & McDonnell Douglas (2 yrs) and then decided to go to college when the GI bill was reintroduced in 1965. I graduated from the University of Missouri at Rolla, Mo in 1970 with a degree in Electrical Engineering. I accepted a position with Western Electric in Lees Summit Mo. After 30 years I finished my “Bell System” career in Orlando, Fl and retired to Leesburg, Fl in March of 2000 where I played a lot of softball, pickleball, tennis, lifted a lot of weights and sometimes even golfed a little. If anyone wants to contact me with any questions feel free to do so:
Thanks, Jim! Sounds like we have a lot in common. Like Jim, my wife is also named Patricia–and is a cancer survivor, too! Heck, we even share the same myeloma specialist, Dr. Melissa Alsina at Moffitt Cancer Center.
But Jim, you need to “punch” your story up a bit! You are so matter-of-fact about everything, but you have been through so much!
No big deal, right Jim? The heck it isn’t!
I was inspired by Jim’s story. Not because of what he wrote or the way he wrote it, but because like many myeloma survivors, he hasn’t let any number of serious challenges control his life. And I think that it is brave of Jim to participate in a Phase 1 study, something that benefits us all.
I’m just guessing that IPI 145-02 may be a form of a drug called ipilimumab?
EDITOR’S NOTE: Ipilimumab is a drug distributed by Bristol-Squib Myers (mainly for Melanoma) whereas IPI 145 is a joint effort of Intellikine, Inc and Infinity Pharmaceuticals. The 02 in IPI 145-02 refers to the 2nd Phase I trial (Dose escalation) as opposed to IPI145-01 (Double blind, placebo controlled study in healthy adult subjects). Here is a link to Infinity’s website:
We could all learn a lot from reading Jim’s story. He faces those challenges head-on–one at a time–and then moves on.
Because he is a veteran, I saved Jim’s story for this weekend. Happy Memorial Day, Jim and Patricia! I salute you!
Feel good and keep smiling! Pat