Pat’s Place: Always More Questions Than Answers
Let me start out with a quick update about how I’m doing after my salvage transplant earlier this summer.
As I become more active, I’m experiencing more bone pain. It’s hard to know if the pain is caused by old lesions or newly formed ones. I’ll know more later this week after having some tests done.
I’m feeling much stronger; I’m walking, swimming, and doing intense physical therapy. I lost a lot of muscle mass over the summer, but I see improvement already. I’m cautiously optimistic about my future.
Becoming a nonsecretor complicates things, though, making it difficult to get into a majority of clinical trials. Potentially more ominous: It makes it tough for my doctors to mix and match drug combinations without knowing how well they are working between PET scans. PET scans are basically the only way to track and assess disease burden in nonsecretors.
We’ll get it figured out.
When I recently was reading some of my old columns from early 2013, I was startled to notice that things haven’t really changed that much.
Two years ago, I was already agonizing about how I was running out of drug options. I still hadn’t tried the soon-to-be-approved Kyprolis (carfilzomib) and Pomalyst (pomalidomide). At the time, recently approved Farydak (panobinostat), and hopefully soon-to-be-approved elotuzumab, daratumumab, and ixazomib, were just a blip in the multiple myeloma research pipeline.
I found my trip back in time to be encouraging. I had already begun thinking about my life in two-year increments. If it’s more than two years out, I wasn’t interested. It was true then, and it’s true now.
Having a myeloma specialist speak in terms of months, not years, when we discussed my prognosis really got my attention last spring. It was the primary motivating factor behind my decision to try a modified, salvage autologous stem cell transplant, which I described in my April column.
I’m pleased to say I have that two-year horizon back. I know my body pretty well. I never expected to achieve a complete response with the salvage transplant (not that anyone could really tell without more tests).
Instead, my body is telling me that, yes, I still have several active lesions. I’m just hoping it isn’t the large one at the base of my skull, dangerously close to my brain stem. A brain MRI should help clear up any questions about that. I hope I’m wrong. But I don’t think so.
My insurance company initially denied my getting the MRI and a PET scan less than three months apart. While they eventually relented, it is yet another concern I have; as I touched on earlier, the standard four months between scans could leave my doctors flying blind.
By the end of the week, I’m hoping that I have more answers than questions. But when you’re living with myeloma, do the questions or worry ever end?
I’ve had readers comment about how “tough” I am. Truthfully, I’m not stronger or tougher than any other multiple myeloma survivor. We’re all part of an exclusive club. No one in their right mind would volunteer to join, but we’ve been drafted.
All we can do is make the best of what we’ve got. It’s hard. It can be painful – and it may not end well. But the strength we gain from overcoming obstacles that most can’t even comprehend is a valuable life lesson.
Still, I think the toughest part of my journey is the uncertainty – the waiting and wondering. Yet another obstacle to overcome. But for me, not knowing is the hardest part.
I should have a lot more answers about my future to share with you next month. How effective was my transplant this summer? Will my doctor recommend doing a follow-up (tandem) stem cell transplant? If he does, will I relent, or listen to my body and try to build on the recovery I’m already making?
It will probably be too soon to know what my next step will be if I don’t agree to undergo a tandem transplant. Do I stick with my out-of-state specialist, or switch back to my new hematologist at my local myeloma center?
One thing’s for sure. As of today, there are more questions than answers. Why can’t I get used to it?
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 .
Keep moving forward I empathize with you I have had 14 PET scans since 2010,as a nonsecretor like you.
"It's What We Do!"
There must be a better way, Gil. I keep reading about this new assay and that new way to measure how we're doing. Are our doctors not paying attention? Maybe insurance is the holdup? Hard for our docs to change therapies "on a dime" relying only on PET scans.
Pat, you're a good writer and I always watch for your columns. I think you inspire many others with your tenacity and positive outlook. I know that you've had a rough year and it was good to read that you're hanging in there, feeling stronger and being more active. I hope that your upcoming test results show some positive findings and provide the guidance needed to determine the best therapy going forward. I just want you to know that there are many others out there pulling for you and wishing you well.
Pat - One more great item. I too had a lot of questions and was always trying to get answers, but some of them elude you. Now I have learned to accept and take the battle one day a time. Life span and treatment options and costs are the 3 basic questions I primarily look at, and the rest I simply let go. Keep fighting and writing.
Best wishes,
Sesha
Indeed please keep fighting and keep writing Mr. Killingsworth! You are a great source of strength and inspiration for all of us patients and caregivers in this journey we all have in common.
Pat:
There are other markers, albeit not as good as the M spike, that I watch from month to month. Being an engineer, trying to relate all the data from the blood tests has shown interesting relationships. For example one can observe blood calcium levels, particularly the change in blood calcium levels. If they are getting high, there is probably bone destruction taking place. One can track hemoglobin numbers also. If they are dropping, chances are there is activity. When you put all these markers together, you can develop an 'equation' that predicts your myeloma activity. It's not perfect but it gives an indication between PET scans that meds are working or may not be. I have correlated this for my personal data, and it gives another level of validation for how I feel my treatment is working. If you have your data, and access to a friend who knows some rudimentary statistics, you may be able to build an 'equation' for you.
All the best Pat.
Nice article Pat. I think waiting for test results is the hardest thing we have to do. Good luck.
Great to hear from everyone. Eric, my myeloma continues to be a mystery. Calcium levels are perfect, despite ongoing active bone lesions. Light chain ratio almost normal. IgG low. Very few if any myeloma cells in my blood and marrow; only in lesions. Apparently a few select clinical trials allow biopsied lesions as proof of progressing disease and may accept a patient that way. Guess I shouldn't expect anything to be easy at this point, right?
I am a 3.5 year survivor and a nonsecretor the whole time. My current specialist in Charlotte, Dr, Usmani (was #2 guy at University of Arkansas) says that the test he trusts most now is the new full body MRI. I have that again on the 23rd and then the next day a BMB. I had a PET in January, described at the time as perfect, so ... just keep checking in and hoping for the best. Usmani thinks we are very close to being able to monitor nonsecretory patients well enough for trials. Keep your head high, you are gonna be part of the first generation to make this a truly chronic disease.
Hope he's right!
Pat, it is good to know that you are getting back to some 'normality'. It is difficult to get a clear picture as to how things actually are going with this disease.
Like you I had many bone lesions when finally diagnosed but my calcium levels were normal, this surprised me too. But the percentage of plasma cells in the bone marrow was not very high it seems at the time. At relapse the situation was quite the reverse, calcium levels went all over the place and the aggressiveness of the clones that had developed led to more than 70% plasma cells in bone marrow. So I suspect there must be a relationship between percentage of cells in bone marrow and aggressiveness of the cell clones present which changes the calcium picture.
I hope that the monitoring with your non secretory status is sorted out so you can think about the next steps for yourself.
I have decided because the disease cannot be controlled by me or my outcome from it I will live as best as I can with life's uncertainties and added physical limitations. So much still to do!!!
Because we are all relatively young on this site this can feel difficult as we negotiate our way through a maze of different opinions, philosophies and contradicting studies to understand treatments, when we all rather wish we did not have this cancer at our age.
Keeping a positive but realistic approach is important. So good to see you keep smiling whilst continuing to ask questions.
Wise words, Edna. We can't control it. Fortunately (or unfortunately) we can sometimes influence our myeloma just enough to get caught up in it all. An informed patient can help our health care team make decisions that could help us live longer. Knowing this makes it more difficult for me to let go. A case of knowing too much?
Hi Pat,
I echo what Sandra said: You are a very good writer. And I would add you are also a consistent source of perspective and hardcore treatment information (among many other things) – thank you. An informed patient can help doctors to make critical calls – of this there is no doubt. I'm not a patient but a caregiver. I know the most in my family and the hardest part for me so far has been seeing a negative outcome, from a treatment plan or test, that could have been prevented, if I had only been able to more quickly put the pieces of a puzzle together.
My frustration can run deep. In my wildest dreams I have no idea how you crunch so much data and keep it straight while enduring such difficult treatment and managing your own frustration and fears. I will never ever ascend to your level of knowledge, but you inspire me to keep pushing. I wrestle with my own insecurities so that I am not intimidated by the complexities from doing MM research – in good part because of you (and several others here on the Beacon). One clear benefit for us has been the ability to spot a poor choice in doctor early on and to find another quickly.
That saying, “Life is about the journey, not the destination” comes to mind when thinking about the quandary you present – knowing too much. Can you save yourself from ... yourself? We journey in so many different ways – some are day trippers, some go to far flung countries that require learning a language, some go with maps and guidebooks, some go to “all-inclusive” resorts, some hire guides and take planned tours, some go hiking with nothing but a compass, a book that teaches how to read the stars, and a can of beans ... It's enduring and finding peace with our journey, I guess, not necessarily the outcome.
Jennifer
Pat, thanks for again sharing the story of your courageous, ongoing struggle. I was diagnosed 23 months ago, stage 3 (as many of us are at point of diagnosis). After an initial L1 kyphoplasty, I started on RVD to bring down the 5.1 M spike. Two weeks in, the 25 mg of Revlimid gave me the beginnings of a Stevens-Johnson rash, so off that and onto Cytoxin. Came down to 0.5 and hovered for months, while Johns Hopkins could not make up their mind on a SCT. In the meantime, I got kicked off Zometa after only 7 months because of ONJ. Switched to Univ of Maryland, and had SCT in Oct, a full 364 days after diagnosis. That, along with a recovery I wont soon forget - seemed to do the trick. 0.0 M spike in blood, and only a trace in marrow. Drs in Baltimore and Phoenix, to where I moved, thought it best to put me on maintenance program.. Revlimid at 5mg, then 7.5. But last month, 10 months after transplant, the cancer is creeping back, as M spike is 0.3 on its way to..? So my next cycle will be 10 mg, and I guess we will find out where between 10mg and 25 mg is the point at which my body rejects the Revlimid. All this as background to saying that it helps me to see such courage as yours in the face of repeated adversity, and that such bravery does play a positive role in our struggles. People do encourage me and congratulate me on stiff upper lip, but I have my moments - doesn't everybody? - and a reminder that one must never lose hope is the kick I sometimes need.
Pat,
Wow. You have been through a lot. I hope you feel much better soon. I have no words of wisdom or insight, but I want to thank you so much for letting us know your path. It gives us insight on our own trip.
Dot
Jennifer gets it; hard to live hour by hour, day by day, and still keep study information that reminds us we're dying. Jennifer, if you get it figured out, please let us know!
Paul, a transplant that works for less than a year is frustrating. That's the thing about medians. If the median time to progression free survival PFS) is two years, that means half of us won't reach two years. Of course we all want to--and expect to--be in the other half. Sounds like you've got an emotional handle on it. Just remember there are a lot of decade long survivors that have early experiences just like yours. Go figure; looks like my long shot, salvage SCT worked, when the earlier one that should have worked didn't. Crazy!
Thanks, Dottie! That's the idea. Glad to help anyway I can...
Thank you Pat for the update. So glad that you are returning to your active lifestyle. It is quite inspiring. Since we are only 15 months into our multiple myeloma journey, we have not thought much of a time horizon. I am glad you are to the point where you can think out two years. I hope ee get to that point soon.
We go out of town to the MD Anderson Cancer Center for treatment because my husband's myeloma is aggressive and his cytogenetics are rare. From everything I have read in the Beacon, heard at seminars, and read in general, our best chances for his survival are to stick with a prominent cancer center. It is at these nationally renowned cancer centers that you have a chance to participate in clinical trials and perhaps try the novel agents in the treatment of multiple myeloma.
Good luck with your decisions - I wish you the best.
Good advice to go with a larger center, Patty. Now make sure the specialist you see treats at least 100 myeloma patients and can confer with others that do, too. Given your husbands situation, I'd want Dr. Orlowski or one of his associates, at least once. Sounds like 2 year horizon a good one for you and your husband, too. I know a lot of "high risk" patients that do much better than expected. Also, rare form of myeloma means "throw out the stats." Could be worse, but also could be better, right?
Yes Pat - we have seen Dr. J.J. Shah once and Dr. Elizabet Manasanch is our primary oncologist in the myeloma clinic. And you are correct, the statistics are not very relevant for him - "only time will tell" with my husband's myeloma. Of course, we are looking forward to that two year horizon, at a minimum.
Patty, nice thing about the two year "horizon:" it keeps resetting! Two years can turn into four, then 8 (like me) then who knows? Best of luck! Don't you think we're all overdue for some of that?
Pat...always enjoy reading your articles; very inspiring to say the least as you continue your MM journey. I truly hope for a complete remission for you!! Stay in the fight!!
My specialist says I need to repeat the transplant process for that; no guarantees how long it'll last. Not happy about it, but probably will. Thanks for the kind words. It helps!
Hope that your ' two year horizon' stretches out a lot longer than that, Pat! Maybe by another two years newer treatments such as monoclonal antibodies, engineeredT cell therapies, checkpoint inhibitors and more will have become more mainstream and curative also. Wishing you all the best and hope that by next year all will be going better for you, and Pattie too!
Me, too, Nancy! The two years "rolls over." No limitations, just a realistic goal. I will admit I'm not very interested in things more than two years out. Global warming? I think its real, but with no kids and my rolling two year horizon, I have trouble getting too worked up about it...
Hi Pat, as always, your writing inspires me. I spent 2.5 years in chemo, an ABMT, maintenance Velcade, many needle sticks and BMBs, the uncertaintancy and finally said "to hell with it all" I decided to just live my life to the end. All those weeks of traveling to hospitals, dr appointments, all the medications, nausea, fatigue and so on. I asked to be put on Hospice and am doing much better now. The nurse visits me weekly, I have a counselor I like, all my meds are delivered, someone comes and cleans my house and I actually feel better. Yes, I have disease progression and pain but I'm not worrying about it and Hospice is helping me. I'm getting my life in order and spending the time I have left enjoying my family and neighborhood rather than spending it as a chemo patient.
I understand and admire your choice, Julie. Sometimes I think it takes more fortitude to do what you are than for me "going for it." That's the easy choice; what people expect. You'll get this: Funny how quickly others are to push you to "fight" and take tough therapy option(s) when they're not the ones that have to do it! By the way, I have a friend who lived much longer than anyone would have expected doing just what you are. Best of luck to you!
For the past nine years I have followed these patient columns, not as a myeloma patient, but as the daughter of one. I found this site to be of great assistance to me as I was searching 24/7 for the next best treatment for my mother. I am thankful for this site and the people that follow it – many therapies and regimens came from here that extended my mothers life. She lost her battle with this evil disease last November 17th, close to a year ago, but to me it seems like yesterday.
I still follow this site and all the journeys, this is the first time I have ever commented. Having been a caregiver and to have loved and lost, I just wanted to say there is no right or wrong decision. My beautiful mother chose to fight until her last breath, but we both understood the choice of quality time instead of longevity. I would have accepted either choice she made, it is the price of love.
So tonight I'd like to say to every myeloma patient fighting, you are all my heros. I have made it my life's mission to help other myeloma patients and pray I can live to see a cure in my lifetime.
Sorry you lost your mother, Jennifer. I'm sure I speak for all guest columnists – and the Beacon team – in thanking you for reading. Glad we could help!
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