[Paul58]

Paul, diagnosed in 2013

by Paul58 on Mon Apr 10, 2017 2:48 pm

Hello everyone! My name is Paul, and I was first diagnosed with multiple myeloma in October 2013. I had been feeling generally unwell for probably an entire year leading up to this, but 'generally unwell' wasn't enough to send me to the doctor's office. The biggest thing was fatigue, which I chalked up to working in a harsh environment in West Africa several times a year for extended periods, and my age. Besides, everybody my age that works is tired, aren't they? Does anybody my age really sleep through the night?

And then there were the random bone pains – sometimes sudden and sharp, but passing so quickly that I could easily forget about them. Certainly not something to complain about to a doctor - probably just another aging thing. And it was not unusual for me to drop 20 pounds after two months in the African heat, on a village diet short on protein and fat. I could always regain the weight, and always did before. And then there were the days I just had to lie down for a few hours because I felt like I was coming down with the flu, aching everywhere and a bit feverish. ('Maybe low-grade malaria?', I thought. Not to make light of that, but I bring meds home with me to deal with it, since it can happen when you spend lots of time in the places I do, and I've had it before).

After returning from my most recent trip towards the summer of 2013, I was totally worn out, couldn't regain those lost 20 pounds, and finally began to lose my appetite. That's when I knew something was wrong! It was in late August that I finally saw my primary physician, who listened carefully and wasted no time in ordering tests to rule out one thing and another. Before the results were in from the last set of tests - including a 24-hour urine test - I had to return to Africa for some important meetings. The doc agreed to let me go as long as he had a way to contact me. Email works fine when I'm in the town where our mission is based, so off I went.

Before a week had passed, I had an email telling me I needed to return to the States immedi­ately because test results indicated multiple myeloma. I didn't want to accept the seriousness of the situation and shot an email back saying, "Can I have a few more weeks here? I have work to do." My excellent doctor happened to be at his computer in his office at that moment, and he immediately fired back, telling me that no, I really needed to come back NOW.

I was back in the States three days later, and already had appointments set up for a bone survey and a meeting with a hematologist / oncologist. The bone lesions in my skull, both humerus and femur, confirmed the diagnosis, along with a shocking amount of monoclonal protein in my urine.

Next was the bone marrow biopsy. It took two weeks for those results to come back and to have another meeting with the oncologist. It was sobering, and I could see that even he was dismayed with the findings. Approximately 80% of my bone marrow was cancerous plasma cells, and I also had myeloma-related amyloidosis.

Before we could decide on a treat­ment regimen, I had to have my heart checked out to ensure there was no damage from the amyloid proteins. At this point I was just plain sick - hardly able to eat, out of breath all the time, and no energy to do anything. My wife and I would sit at the dinner table while I tried to choke down little morsels of food to please her, and she tried to choke back tears. I really thought I might just die, and I said to myself, "At least my sons are all grown and on their own, my wife and I have gotten to do a lot of good ministry and have had so many great experiences over the years. If this is it, I can't really complain, can I?"

It turned out that my heart was just fine, and according to the oncologist, other than the kidney damage, bone lesions, and barely any healthy bone marrow left, I was in good shape! So I started 16 weeks of CyBorD infusions (Cytoxan, Velcade, and dexamethasone). It was assumed that after this induction phase, a stem cell transplant would be next. I had lots of friends around the world praying for my recovery, and the improvement was rapid. By the twelfth week of those sixteen weeks of treatment, my oncologist walked in with a big smile and told me I was already in complete remission, according to the kappa-lambda free serum results, immunoglobulin readings, and the 24-hour urine test.

I finished out the last 4 weeks of treatment, and then did another bone marrow biopsy. This second biopsy turned up ZERO cancerous plasma cells, which the oncologist told me he had never seen before. At this point, we decided that I would not do a stem cell transplant, or even maintenance therapy, since there was not even 1 or 2 percent of my bone marrow showing any cancer. The plan was simply to do the pertinent blood tests every two, then every three months, to monitor things. I made it nearly three years in complete remission.

In December 2016, the kappa-lambda numbers had begun to creep out of range, but still no M-spike in the electrophoresis, just a 'faint band' as the lab report put it. Thus in January I began another 16 weeks of CyBorD infusions. I have two weeks to go, and all the tests results are back to normal. But this time, maintenance therapy seems necessary, and I'll have to make some decisions about that, and how it will affect my work in West Africa.

Thanks for taking the time to read all this! When I first started this journey over three years ago, I was truly grateful for the wealth of information the Myeloma Beacon provides. As I began to rapidly recover, however, I just wanted to get back to my normal life (which may be a little bizarre nonetheless), and decided I really didn't want to become a citizen of 'Cancerland.' But now that some type of maintenance therapy is in order, here I am again! I'll be looking for input from this community, and looking forward to interacting with many of you. May I be honest and say that I still don't want to identify as a citizen of Cancerland... maybe I can just get a green card?

[Bo808]

Re: Paul, diagnosed in 2013

by Bo808 on Mon Apr 10, 2017 6:12 pm

Awesome testimony! Your selflessness in ministry has truly has truly inspired me to be strong in faith and stay the course! My multiple myeloma and CyBorD journey has just begun, and reading your story has uplifted me! Aloha and God Bless!

[wenlock00]

Re: Paul, diagnosed in 2013

by wenlock00 on Tue Apr 11, 2017 4:36 am

Paul, very inspiring for someone like me just starting out on assessment - thanks for sharing your story.

[Paul58]

Re: Paul, diagnosed in 2013

by Paul58 on Tue Apr 11, 2017 6:27 pm

Brian: Thanks for your encouraging words. When I started, I was so sick and tired that I really did not have the motivation 'fight the good fight of faith'. But so many people graciously began to carry me in prayer and to encourage me - and that made all the difference! I thought maybe that people wouldn't want to hear about my medical stuff all the time, but they did want to know and be updated. All that to say, share with your spiritual family and don't be shy about soliciting all the prayer support you can! Also, be encouraged with the chemo regimen. I was worried how I would handle it going in, but I did really well with the CyBorD and didn't have any side effects to speak of, except maybe being wired and hungry all the time from the dexamethasone. Blessings to you!

Wenlock00: Thanks so much for reading a commenting, and yes, be encouraged! There have been so many advances in research and treatment options, so there is definitely reason to be hopeful. In the meantime, do your best to eat a healthy diet, and to exercise if you can. There's nothing magical about it, of course, but I think doing what we can to be healthy in other ways certainly helps our bodies to support whatever treatment we need to do. Praying the best for you, and hope to hear how it's going as time goes on.

[Colin]

Re: Paul, diagnosed in 2013

by Colin on Tue Apr 11, 2017 7:59 pm

Thanks for the very enjoyable read, Paul. I am in my 18th week of CyborD and have seen the M-spike come down significantly. I am scheduled to go through with the stem cell transplant this summer, and I hope it gives me that extra kick but it is encouraging to know it is not the only option out there. I have read many pros and cons in this, but one will really never know which was the right course of action.

I admire your outlook on life and your dedication to your work over in West Africa. Good wishes to you in knocking back multiple myeloma for a second round.