Pat's Place: Be Careful What You Wish For
“Inconclusive.” That’s how my myeloma specialist described my current condition two weeks ago.
While I initially struggled with this description – because there was no clear-cut solution for it – I slowly came to see the upside of my current situation: It allowed me to not hurry to the next treatment, but rather embrace every day, no matter how uncertain or painful it may be.
My new specialist at the Mayo Clinic, Jacksonville, came highly recommended by several of my contacts at the Mayo Clinic in Minnesota. I was treated there for the first two years after my diagnosis, before moving to Florida and starting a successful five-year run at the Moffitt Cancer Center in Tampa.
Like most of you, my form of multiple myeloma is quirky. On the surface, my myeloma is the most common type: IgG Kappa, measurable with a serum M-spike, the most common myeloma marker. But my IgG protein numbers are normal. My urine shows no sign of involvement. Even my free light chains read normal.
Fortunately, my M-spike has been a reliable marker over the years. It doesn’t jump around month to month. Instead, it slowly trends up or down, usually in 0.1 g/dL increments.
Unfortunately, my M-spike has been inching up the past five months. The lesions identified by a PET scan and X-rays four months ago had started growing when my M-spike was only 0.4 g/dL; it is now at 0.7 g/dL.
The myeloma specialists at Moffitt and the Mayo Clinic agreed that I will need to make a therapy change. However, they couldn’t agree on what to try and when to start.
Complicating things: my white counts have plummeted to the point that I’m considered neutropenic, leaving me more susceptible to infection.
This was to be expected because any time I used Revlimid (lenalidomide) at a dose of 10 mg or more in the past, I have had trouble keeping my white counts up (I’m currently on 15 mg daily for the standard 21 days on and 7 days off treatment cycle).
My platelet count was also low. Revlimid seems to suppress that, too. That’s a holdover from my autologous stem cell transplant way back in the summer of 2011, which seems like light years ago!
My busy and stressful schedule over the past few months probably hasn’t helped either. The last few weeks have been crazy busy for my wife Pattie and me. We moved into an unfinished home that we’re renovating in the sleepy ocean town of Fernandina Beach, and Pattie started her new job north of Jacksonville on Amelia Island.
Fernandina Beach is almost four hours northeast of our former home in Weeki Wachee -- just far enough away to make working with a contractor and moving challenging. I’m sure we’ll enjoy comparing and contrasting life on the Gulf Coast with the ocean side of Florida once we’re a bit more settled.
In the meantime, here I sat, caught in no man’s land.
My new specialist didn’t want to make a therapy course correction without more data. My M-spike has held at 0.7 g/dL for the past few months; evidence that Revlimid-Velcade (bortezomib)-dexamethasone (Decadron) (RVD) was still doing something.
He and I agree that this would be an opportune time for me to try a clinical trial. The Mayo Clinic is recruiting for several innovative studies, including one investigating the new compound LCL-161. But every trial we checked requires either an M-spike of over 1.0 g/dL or a light chain value of 10 or more; mine is an inexplicable 0.0.
Inconclusive. How frustrating! Everyone agrees that I’m going to need a therapy change. I haven’t used any of the dozen therapy combinations except for RVD. My emotional response: Pick one and let’s get on with it!
Be careful what you wish for!
Last Thursday, I had another PET scan. Just when I was getting used to the idea of sticking with RVD for a while longer, I got a call from my doctor at the Mayo Clinic Friday morning. The scan showed new lesions were forming in a half dozen new locations, including the back of my head, the base of my skull, and my neck.
My specialist and I had checked X-rays taken two weeks ago together, shot by shot. No one disputes that I’m living with several painful lesions. But none threatened to lead to a debilitating bone break. With new lesions developing again, he affirmed it was time for a therapy change.
"Let's start with Pomalyst (pomalidomide; Imnovid) and dex," he said.
So that's it. I'm officially refractory to both Revlimid and Velcade. After seven years, I've reached a fateful turning point. I'll share more about what this means and why it’s so important next month.
Until then, wish me luck! Let's hope and pray that Pomalyst works as well for me as it has for many of you.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Pat, Maybe I'll run into you at Mayo as I did at Moffitt. I go there for COPD but it is the same campus. I get how antsy you are. Hey doc, let's get on with it. My wife is 2 months into her stage 4 renal carcinoma diagnosis and we've yet to begin treatment. We all know that you push yourself on behalf of of all MM patients everywhere. What you share with us in your columns, books and panel participations is both educational and inspiring. Thank you for all of your efforts. My family keeps you in our prayers. Best wishes to you and Pattie.
Pat - there's a little Methodist church a stone's throw away from my home here in Missouri that has been praying for you for several years now. I'm on their list, too. I've shared with them that in the midst of waging your battle, you have reached out to countless folks trying to make sense of living with this disease. Please know that there are a lot of people, most of whom you will likely never meet, pulling for you. I'm hoping that there are positive, conclusive results coming down the pike.
Hi Pat, I agree with the above comments! I first read your columns through emails from my support group, back in 2010, and read your books also. Because of you I found the Myeloma Beacon (your columns, and also Sean's, were emailed out back then). Please take good care of yourself and Pattie, don't overdo it, and hopefully the new treatments will work well for you. Best wishes!
Pat, sending you prayers and positive thoughts from California. Your attitude is going to ensure that Pomalyst does the trick.
The odds are in my favor (since Rev worked so long and so well) and I certainly have an amazing group of supporters in my corner. Maybe the myeloma will sense it and back off! If POM works, that's my story and I'm sticking with it!
Minnesota Don has had wonderful success with Pomalyst. Even in a clinical trial. May you exceed that.
Regards,
Hi Pat. My husband and I live in Jacksonville Florida and his specialist is at Mayo. SCT was in Feb 2011 and he has been in remission until now. Got to make a decision soon on treatment.. Hope you guys like Fernandina. We have grandchildren and great grandchildren who live there and love it. Welcome to North Florida! Would be interested to know if there Is a support group here that you have joined.
Hello Pat, I enjoy your matter-of-fact column.I glean allot from your posts. I'm a Mayo patient in Scottsdale AZ. I have IGA Kappa soldering myeloma for almost five years..My IGA numbers are slowly creeping up and M-spike in two bands both gamma and beta are up by .1 and Mayo feels I may have to start treatment in the fall..I have normal freelights and my CBC is perfect except for low platelets..I'm amazed at the complexity of myeloma as I've learned from you that although your M-spike is low you have lesions..I wish more people would share their pathology in these columns instead of life stories..In your posts I draw comparisons and plan for future treatment..Thank you for informative column..Ralph
Adding my prayers to those above. I have learned so much from you not just about myeloma and treatments, but "living" with myeloma ... thank you.
Glad to help, everyone! Marcia, I'm considering starting a group in the Amelia Island, Yulee area. There is a group that meets monthly near Mayo. Did you know about that?
Hello, Pat!
I sure will be thinking about you and praying for much success for you with the Pomalyst. I appreciate your sharing the specifics about your mm. That has really helped me not to be afraid and to try to learn about my own mm and to understand the numbers better. I've just started maintenance Velcade, so I've got fingers (and toes!) crossed for a good run with it.
Thank you again, Pat, for all you do for us mm patients.
Sylvia
Hi Pat. Don't you just hate these annoying setbacks ... You just have a nice stable regimem in place, with the various side effects under control and suddenly the world goes all wobbly. My survival rule no 1 is: this: only worry about the things you can influence - I find it saves a lot of time. But from reading a number of your earlier columns, I think you might live by this rule too.
As one of the sanest and most informative patients writing about myeloma I have come across, firstly thank you for your past columns. Secondly, I just wanted you to know that I very much look forward to your comments on pomalidomide, managing its side effects and how the treatment compares with lenalidomide. There's a real shortage of good info on the web.
All the best,
J
Thanks, Sylvia! And yes, J, you hit it right on the head!
Thanks for a great column Pat, I am fairly new to The Beacon and am finding much useful information. I live in Australia and last December started a clinical trial with pomalidamide and dex. I was diagnosed in 1996 with "Bence Jones only multiple myeloma" and initially had very high dose chemo followed by 2 autologous stem cell transplants, which gave me eight and a half years complete remission.
Since my first relapse in 2004, it seems to have been a constant round of remission/relapse/different therapies. Most of last year was spent taking Velcade/dex, but my kappa light chains and Bence Jones protein refused to play the game, hence the change to pomalidamide. Still struggling to get the numbers down and nearly gave up last month (first time in 18 years I have felt that way), but I am back in the fight now and dealing with the new side effects.
Good luck with your fight and I do believe that my positive attitude has kept me going for so long and hope that you can remain positive too.
18 years! Way to go, Susan! Hope and inspiration from down under!
Hi Pat, just want to thank you, you have been an inspiration to me since my diagnosis. I was able to get on a trial with MLN9708 with Mayo and responded almost immediately. It is a wonderful drug with few side effects, but you are right -- I had to wait until my m spike was 1. It's sad they have these restrictions on these trials. I hope you respond quickly, and wish you well.
In my thoughts and prayers Susan.
Just started Velcade/dex - 2nd month done ... MM/amyloidosis
My impression is that MLN9708 (ixazomib) is an incredibly promising drug; I hear from patients like you that are using it successfully often, Maria. We have three patients in our support group on it now: 2 newly diagnosed and a third that claims he's been on it longer than any other patient. All are doing well. Glad its working for you! Awesome!
Paula, always great to hear from our friends in New Zealand! As tough as it is fighting a battle on two fronts (amyloidosis and multiple myeloma) I know many that are winning! Good luck to you!
Pat, I have had myeloma since November of 2010. Was wondering if you feel that you are getting the best care there in Florida? I'm going to Dr. Lonial at Emory in Atlanta, and have had a wonderful experience. I am a member of the mmrf and he works very closely with Kathi Gusti and her team. Would love to know your thoughts. My family just sold a home on Amelia Island and we frequent there regularly, as my husband is a native of that Island. Would love to meet you.
Best wishes on your new treatment,
Janene Lancaster from Cherokee, North Carolina.
We are very excited to be living here on Amelia Island, Janene. Dr. Lonial does a great job; glad you're happy with him. Nearby Mayo Clinic is one of the reasons we considered the move. Yes, I'm very pleased with the care so far. Good luck to you!
Pat, with your experience, I just want to pick your brain, if I may, please. Do you have any experience of taking dex when you are OFF or on a rest period with Velcade and/or Revlimid?
Thank you so much for your time.
Could you be more specific, Arona? Do you want to take it off weeks? Does your doctor want you to? I've been on dex only therapy, taking it daily and/or weekly.
Hi Pat,
Moving home can be quite exhausting for those who don't have myeloma - I am sure you don't do too much and wear yourself out (hah - it's probably something that we all do). Take care re infections - I got a generic email from my children's school 2 weeks ago about a case of whooping cough - great! If you got a good several years out of Revlimid, hopefully you will have a similar response with Pomalyst. Keep smiling and remember "I get knocked down but I get up again".
All the best,
Libby
Thanks for the encouragement, Libby! We're getting settled in and my blood counts are back up on pomalidomide. Avoid infections: check!
Hoping you're feeling more settled in your new home. Praying for all good effects and no side effects!
How kind, Kathy. Thank you! Dragging and running a fever today; hearing from you made my day!
Me, too! I've had my right hip replaced and AVN clearly shows up in the left. Thanks for reading!
Pat,
I just discovered your column! I would definitely have welcomed it in 1997, at my diagnosis.
I'm also an IgG.
I have a cautionary tale for anyone taking dex. Long term use can cause avascular necrosis. Mine is in the hips. One replacement in 2011 and another as soon as I can find time.
Thanks for doing what you do. You are a welcome and so necessary blessing.
Please know you are on a prayer list or two here in the FL panhandle.