Pat’s Place: Watchful Waiting Is Not For Me
Myeloma is a heterogeneous disease. I hear that phrase used often among multiple myeloma specialists. But what does it mean?
It means that myeloma isn’t a single type of cancer. It‘s a multifaceted demon, effecting each of us in surprising and unexpected ways. Researchers now believe that there can even be several different types of myeloma in the same patient. As you can imagine, this makes myeloma exceedingly difficult to treat; it’s hard to hit a moving target!
Sometimes myeloma affects our kidneys; sometimes our bones. A large minority of patients remain asymptomatic for years. Some never develop lesions in their bones. Others discover lesions outside of their bones, in muscle.
I lost a dear friend to myeloma this week. He never developed a single measurable lesion. He died three days after developing pneumonia.
My type of myeloma – IgG Kappa – is very common. But the way it acts isn’t the norm.
Last week, I fractured a rib getting into my wife’s car. It wasn’t a complete surprise to me. I relapsed several months ago for the third time. After creeping up for a while, my M-spike (monoclonal protein level) was holding steady at a reasonably low 0.6 g/dL. For the vast majority of patients, a steady M-spike of 0.6 g/dL is nothing to be concerned about. Many patients live active and near normal lives with M-spikes a lot higher than that.
But my myeloma acts very differently. For unknown reasons, I start to develop bone lesions once I reach 0.5 g/dL – and this time was no different. It turns out, my rib cracked because it was weakened by several large plasmacytomas (tumors) growing under my ribs. X-rays confirmed this, and I started targeted radiation therapy yesterday.
I’m scheduled to undergo a PET scan later today. I’m calling my shot! Bet I can tell you what the scan will show. In addition to the plasmacytomas under my right rib cage, I can feel bone pain high up on my left hip, and deep in my lumbar vertebrae and right clavicle. Those are new, painful hot spots. Who knows how many lesions I have in places where I have yet to feel damage?
Three relapses. Twice before, I’ve developed lesions earlier than expected. So do you think I was yelling and screaming at my doctors, trying to get them to adjust my therapy so we could get my M-spike back down?
No! I should have known better. They should have known better. But multiple myeloma can lull you into a false sense of complacency. For three months, my doctors have hemmed and hawed about how to tweak my treatment regimen of once-weekly Velcade (bortezomib) and 20 mg of dexamethasone (Decadron) for four weeks on followed by two weeks off.
My medical oncologist suggests I try one thing, and my myeloma specialist suggests another. I want to try a third option first.
So what did we do? Nothing!
To be fair, that’s not always a bad strategy: milking every last day possible out of a therapy. Watchful waiting can be a good thing. But not for me, not once monoclonal protein can be clearly identified in my blood.
I will never make that mistake again.
Next month, I’ll share the results of today’s PET scan and which therapy option the three of us agree on. In the meantime, here’s my advice: No matter what treatment decision you and your doctors choose, make it firmly and with purpose. Watchful waiting is a therapy choice. Don’t muddle along, waiting to start or change therapies because you or your doctors aren’t sure what or what not to do. Make the best informed decision you can at the time and then never look back.
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, I'm hoping that some of your bone pain is secondary to a single, or primary area of bone lesion, in other words, like any chiropractor will suggest, when one area is out of alignment then that can effect others....so perhaps you have only the one area of lesion(s) under you ribs. Perhaps the other areas where you are currently having pain are simply muscleoskeletal "misalignments", if you will, that are a secondary result to the primary bone damage?
If that's not the case, and if in fact you have diffuse lesions, then it would definitely seem that NOW is the time to go to the next big gun, Imid or PI, along with perhaps a monthly infusion of Zometa, at least for awhile.
My last thought, since you've brought it up, is that with such a low "threshold" so to speak of M spike as it correlates to your bone lesions, perhaps future imaging should always include at least a MRI, if not PET/CT?
Sending positive thoughts your way.
All great suggestions, Steve! A PET for me – especially if I'm stable but still have an M-spike – should be a must every six months. Let's face it. If X rays can see something, it may be "too late!"
Pat thank you so much for your encouragement and wisdom! I am going to Chicago next week to see what my next plan is. I would love to purchase your book. May I also ask you to autograph it. How may I go about doing that? I live in Fort Myers, Florida not looking forward to Chicago weather.
Friendly Regards,
Fred L. Davis
Completely agree with you that this disease can lull us into complacency. Easy enough to do when one is trying to stay positive and live life to it's fullest as you obviously are. Don't beat yourself up over it. Save that for the myeloma!!
You now have reached a turning point where you know what you need to do and how to do it to keep this monster at bay. PET scan!
As I told you recently, time to kick some myeloma butt!!
Thanks as always for sharing your myeloma's turn of events, and educating us as patients about all the scans, etc. I think you are right to just get a new plan of action and try to reduce this latest uptick in the disease. Really best wishes coming your way, and hope that by next month everything is going a lot better for you!
Fred, you can email me about the book; glad reading my accounts help out. Scott and Nancy, you are good friends and your input is a blessing for the myeloma community. Thank you!
Fred - I am new to the MM community. Husband just diagnosed in November. May I ask who you will be seeing in Chicago? Chicago is where we go for treatment. I am also interested in finding out about this book you talk about. Thanks.
Pat- have only read a few of your columns and I appreciate the information you provide.
Pat, I have been reading your contributions and experiences for quite a few years now. I very rarely contribute much, I just read a lot about the different experiences of other MM patients.
I find myself looking forward to your contributions more than most because it seems that many MM patients follow you and pick your brain as if you were a doctor. I don't mean for that to be some kind of joke, just a point I'd like to make about how much our readers respect and follow you.
Anyway, like I said, I read a lot more than I contribute, but I hope I can change that as soon as I feel I have something I feel would be of interest and help to others that have MM.
Just a bit about myself ... I was diagnosed in 2009. I have been treated with Zometa,and Revlimid for about the first year. I had a stem cell transplant in 2010, and have been on Revlimid maintenance since 2010. I was started on 25mg, then 15, 10, 5, and for the past 8 months 5mg every other day. I have been doing very well, with all my blood work coming up too good to believe. I'm waiting for the other shoe to kick me in the ass.
In your best guesstimate, can 5 mg of Revlimid every other day work much longer? Have you ever heard of a MM patient going so long on such a low dose of Revlimid ? I know everyone is different, but I have yet to read about anyone staying on Revlimid for such a long period.
Anything you can contribute I would certainly appreciate. Thanks for all you do for all of us, stay well, and God Bless You, Pat.
JP
Thanks for the kind words, JP! No, I'm not a physician. But focusing on myeloma 24/7 as well as living it has given me a great perspective and knowledge base in one very small area of medicine. I recently developed a thyroid issue. I knew nothing about it. Start needing to factor in co-morbidities and drug interactions and I'm not your guy! But the basics -- side effects, treatment options, dosing -- I'm pretty up to date.
For example, I may be able to answer your question better than some docs, because I hear from so many patients day in and day out. Personally, my myeloma returned soon after I dropped to 5 mg Revlimid 2 weeks on and 2 weeks off. May have been a coincidence. I was right at the three year average for relapse among patients that achieve CR using Revlimid therapy without transplanting. Some patients go that long with no maintenance post SCT. Others relapse after staying on higher traditional maintenance dosing; 10-15 mg 21 days on and 7 days off. T
here are variables here that even our doctors don't understand. Its all a guessing game. If you can't keep your counts up (I couldn't) using higher doses, doing the best you can this way makes sense. If low ANC counts aren't an issue for you, why did you drop all the way down to 5 mg? And every other day? Guess I would opt for 10 mg every other day or 5 mg every day. Then again, if it ain't broke, why fix it?
So to directly answer your question, yes, I know patients taking low dose Revlimid two weeks on two off, or every other day, that do just fine. Try to focus on the good news. When you do relapse you have so many treatment options (including another transplant) that you should be around for a good long time! Be happy you are doing so well! I'm happy for you!
Howdy Pat, Ralph from Arizona here. Have you thought of consulting the NIH in Bethesda MD. I had a bad experience with a hematologist in a small northern Arizona town which prompted me to move to Phoenix to be close to the Mayo Clinic, and also I'm in a clinical trial at the NIH. I get the best of both worlds and the NIH is free. I compare what both the Mayo and NIH say, then make an educated decision from there. As always, wishing you and all the best.
Pat, I am a recently diagnosis mm patient that was lucky to find this disease by an mri of my shoulder for another reason.As a registered pharmacist for over 40 yrs, I have seen the vast improvements made in cancer treatments over the years..I have seen patients years ago get a cancer diagnosis and die in less than a year..those same patients today could live for years...the targeted chemotherapy drugs that we have available to mm patients are really a God send compared to the old scorched earth of the past. Even the side effects are lower and better. So far in 11 weeks of CyBodD treatment I can't say I have had any major side effects..the most for 40mg Dexamethasone/week. In my career, I have made some observations concerning cancer patients that is worth sharing...the patients in general that seem to do the best have certain attributes that give them better chances for survival...they are catching their disease early as possible, fairly young and healthy, active and physical lifestyle, positive mental attitude about their situations, and also a faith in a higher power that helps support them emotionally at a level not attainable my medical science,and finally but just as important is strong family support and love...you might be able to add a few more that I didn't include or think of..please share if you have any more...such a access to the very best mm doctors and oncologist helps also. Having only experienced this disease for about 4 months, I can easily see that you can never let your guard down at any time. I don't care if you are in clinical remission, smoldering, active disease treatment, or just sailing alone doing just fine in maintenance. Now having said that, I can see where thinking about this disease 24/7 does wear a person down over time, but this is something that just needs to happen to some degree. WE all would love periods where we could just escape our situation totally, but for me I will settle for those times and moments I can just forget for a while..but from my research this disease is a demon that Pat describes it...not one in a literal sense, but in how it has very little mercy and compassion on us..if you over treat too aggressively (my mindset) then you bring on drug resistance and less effective treatment..if you relax and do nothing or minimal then it come roaring back with a venegance..so each person must stay vigilant and work with their doctor doctors
Pat, you mention your IgA kappa myeloma having relapsed with possible extensive bony lesions and plasmacytomas but no mention of your light chain levels; up to 10% of patients when they relapse do so as a new clone of light chain only myeloma that requires different chemotherapy as to what the primary myeloma has responded to. I assume that your kappa and lambda light chains have been assessed?
Pat,
Your column was the first I read on the Myeloma Beacon when I was first diagnosed nearly two years ago and became a daily reader of the website and your column was a major reason I make reading MB part of my daily routine. As MB's newest columnist, I can only hope that I come close to writing at the level you and others do. I have my first check up since starting treatment (just completing cycle #4) next week and your advice on making a decision on treatment firmly and with purpose is advice I will heed as we plan my stem cell transplant. Best wishes to you as you battle on!
Welcome aboard, Steve! Looking forward to following your myeloma journey on the Beacon. Glad I could help early on. Best of luck!
Hi Pat, thank you for sharing, your column was very helpful when my husband was diagnosed IGG Lambda and multiple lesions on September 28 2012. My husband 49 years old went for radiation and for 5 cycles of Velcade and Decadron follow by a stem cell transplant May 9 2012.
The bone survey October 5, 2013 the results, were overall stable. The flow cytometry on Oct 29 as follow, The plasma cell immunophenotype shows rare poly clonal cells 0.04 cells, CD 56 normal, 1% plasma cells. On the FLC ratio was normal august and September but in October the FLC ratio went down even if the FLC kappa 0.16 and lambda 1.18mg/dl were normal. The last check up was DEC 19 2013 the FLC went down even more to 0.11 but the kappa FLC went down too 0.13 and the FLC Lambda stay stable 1.20.
I look all over the internet but I don't understand what it means, I know if the ratio is low its not good but, the cases I saw were both FLC kappa and Lambda down or FLC one high and the other down but not normal and down. I was wondering if you can help me understand this results?
I am sorry to hear what happened to you when you enter your wife car. Have you try curcumin yet? I wish you well, is very important to your readers. If you do well we all do well.
Thank You
Hi Pat,
I am sorry to hear of your latest turn of events with this insidious disease. I am hoping your specialists will now truly realise that waiting is not an option for you. They will always need to have something up their sleeve. Wishing you all the best & I am hoping you are wrong about your "hot spots".
Mary Ann, understanding the nuances of these ratios isn't my strong suit, either. For me, it's straight-up M-spike, plain and simple. Maybe one or more of our readers can give you some advice. Sorry I can't help! Thanks for the well wishes, Libby!
I have just been diagnosed with pneumonia. I 'm not terribly sick (just can't stop coughing). My numbers are all good except 0.2 M-spike. Maintainance Revlimid 0.5mg daily. Wbc's, platelets, all other blood work normal range.
What exactly did your friend die from?
Thanks,
Coach Hoke
Hi, Pat!
Yes, please share the PET results and let us know what you and your doctors agree on. I'll be thinking of you. Thank you for your advice about making an informed decision and not wavering. I'm having an auto. stem cell transplant very soon - daunting, yet needed.
Take care, Pat.
Sylvia
Coach Hoke, my friend's immune system was horribly compromised; myeloma cells filled his bone marrow, preventing it from producing enough white blood cells. My understanding is the infection took over, was not responding to antibiotics and he wasn't able to breath, even with oxygen. Sounds like a totally different situation, but please be careful!
Thanks for the support, Syvia! PET didn't show anything unexpected; a half dozen "hot spots" that most likely represented measurable lesions. I'm on daily radiation and back on high dose RVD. No fun, but with any luck at all it will do the trick!
Thanks Pat' I got rather scared when I read about your friend.
I'm doing well .
Thanks for getting back to me.
Good luck to you,
Coach Hoke
It's time we patients and caregivers request myeloma specialists to come together and find a cure.
Glad you are doing OK, Coach Hoke! Lots of pneumonia going around this year. I'm a bit congested this morning; causes me pause...
AMEN, SB, AMEN!
Pat,
I was diagnosed with smoldering myeloma 1.5 yrs ago and am in the "watchful waiting" period since. See my onc every 3 months for blood work. Very stressful wondering if and when the axe will fall. Latest numbers have mspike at 1.7, IgG at 2900, slowly rising, and all else ok for no. No bone lesions, 20-30% plasma cells, abnormal chromosomes, hyperloidy. No overt CRAB symptoms yet, except generalized osteopenia. On Zometa every 3 months.
My onc says no need to treat yet. I keep wondering if I should do more tham watch and wait. Seems wrong knowing I have cancer in my body but not doing anything more about it. What do you think, Pat? I haven't had 2 nod opinion yet because onc seems to know what he's doing, but he isn't myeloma specialist.
I have kept this problem secret since diagnosis. No one except my husband, best friend, and onc know. I look forward to your articles and everyone's comments. Makes me feel not so alone.
Best wishes for you, Pat!
Diana, your stress and angst is very common among smoldering and even MGUS patients. No one wants to sit around and do nothing when we know something is wrong and going haywire in our bodies! You have two options. Join a study that treats high risk smoldering patients early (sounds like you may already qualify), or try and be patient, knowing every day you wait is like another month you may live in the end. Myeloma therapy will be completely different ten years from now. Much more targeted and effective. Less toxic. If you were--heaven forbid--to move on to active myeloma sometime next year, your chances of living a decade are already good--and that doesn't take into account any of the advances I'm suggesting. By the way, "high risk smoldering" in this case doesn't refer to cytogynetic factors. It's a term used when a smoldering patient is deemed likely to switch to active myeloma during the next three years. Good luck!
Thanks for your reply, Pat. Your words provided me things to consider, especially with regards to the future. Option number 2 is probably the right choice for me at this point, but patience isn't one of my better qualities! Need to work on that!
Thank God for the advancements in the treatment and management of this disease. Guess we're "lucky" to have been diagnosed these days rather than even 10 years ago.
Take care, Pat. I enjoy reading your articles.
I understand how you feel, Diana. None of this is easy! But take it from someone that is on the backside of all of this. Options can equate to hope. You still have every one available to you, including watchful waiting. Good luck!
Pat,
First and foremost, I wish you were not engaged in another battle with this disease. I have read and found humor and valuable advice your columns since my diagnosis of high risk SMM. Beat this beast back! - with the help of your MDs, your determination and immeasurable good wishes from me and your MM friends.
Re: smoldering myeloma (SMM) - I sought a local onc with my initial diagnosis of MGUS who sent me on to a cancer center for follow-up, which is where they said nope, it's SMM. Since then I am followed by a local hem/onc, sought a second opinion from and stayed with a wonderful myeloma specialist in NYC and I am in a study. The more eyes the better - but I consider myself to be the one with the greatest stake in this game so I keep up with the info from this site and others the best that I can.
Best to you and your family - and looking forward to hearing you are doing well!
Glad you are doing so well, Susan! No worries, OK!
Pat, thanks for the always informative articles and all the readers who post comments! I am also at Moffitt (think I saw you there once LOL). I was diagnosed in 2011 with a big fat tumor on my femur that Dr. Letson took off and replaced with bone cement and a long metal plate with 9 screws. I still am not walking well but I press on. ASCT in 2013 and maintenance Velcade since. I have pretty extensive bone involvement and M-Spike at .6 since the transplant.
My questions is: I was told that because of my metal plate I can no longer have PET scans. Knowing that you had your hip replaced how come they did that?
And for those in Chicago, I'm on my way there to live and get treatment at the University of Chicago. I know I must be crazy given the weather but I'm feeling like I need another look at my therapy.
Julie in Sunny Sarasota
I have no idea. Different type of metal? Pattie and I were considering moving back north to Madison, but after this winter? No way! Good luck!
Pat,
Sorry I took so long to reply to your very helpful information to some of the questions I had asked you.
I want to thank you for your reply as well as wish you the best. So many people here read your posts and ask you tons of questions. I'm also certain that the very same people have you in their prayers just like I do. God Bless you Pat for all you do and I am expecting to be reading your posts for many years to come.
From what I read about how far research has come in the past 10 years, I have a strong feeling that a cure is not too far away.........
Thanks again for all you do !
Thanks, John; I can use all the help I can get!
Hi, Pat, I am in a crossroad of changing therapy right now and I can't decide. I had BiRD and then Velcade/dex weekly before my stem cell harvest and after harvest, Velcade/dex every other week for a year, until my M spike is now 1.6 and Kappa at 300 (it was 34K before treatment). My specialist gave me 3 options: VD every week (no rest); V-BiRD, days 18 and 15 with Revlimid 21 our of 28 days, weekly dex. I have no lesions and am tolerating current treatment well. Still working full time and QoL is excellent. I am anxious about changing therapy, but you advise NOT to wait. How can I sort out my confusion? It is up to me to decide which to choose. Can you help a bit so I can calm my nerves? Thanks ...
Nice to hear from you, Arona. I think we all need to establish a therapy philosophy. So far you have been using what's called an incremental approach. Your maintenance has been pretty light. May have something to do with your myeloma becoming active again so soon. But maybe not. Such an inexact science. What would I do? Remembering that I'm not a physician, I would go back to what worked. If dose or frequency of one or more of the drugs needs to be increased--and you can tolerate it--do that. Next logical step would be to add Revlimid(RVD). Once your numbers dropped again, Revlimid maintenance could buy you years of stable disease. So where are you? Two or three years down the road? At that point you transplant or try one of the newly approved drugs; there well be two or three more available by then. One step at a time, one day at a time. I'm still learning how to do it after seven years. But when I look back and think about the precious time I've wasted worrying about it all, I'm motivated to continue trying to adjust to our "new normal." Easy to say, not so easy to do! You still have so many options. Having Revlimid in the bullpen is powerful. Good luck!