Pat’s Place: Don’t Let Denial Cost You Your Life
An oncologist you’ve just met says you have multiple myeloma, an incurable cancer of the bone marrow. He or she reminds you that you aren’t a statistic. “With luck,” your oncologist says, “You can live six or seven years — even longer. We should start treatment immediately.”
You and your caregiver frantically hit the Internet, hopefully viewing sites recommended by your doctor first. Overall survival statistics are all over the map: from three or four years to a decade or more. Much of the survival disparity has to do with genetics. Do you have chromosomal abnormalities, such as deletions or translocations, that might make it more difficult to treat you?
Most myeloma patients don’t have such abnormalities – or only have one or two minor translocations – so there’s hope of living eight, ten, or even twelve years.
Once you are diagnosed, the confusion begins. There are so many therapy options. Should your doctor use a double (Velcade-dexamethasone or Revlimid-dexamethasone) or triple (Velcade-Revlimid-dexamethasone) drug combination to start treatment? Should you then get an autologous stem cell transplant (using your own cells) right away, or just harvest the stem cells and wait to transplant? Or do you head to Arkansas and undergo Total Therapy?
If your genetic profile is a bit more gnarly – making you high risk – should you consider undergoing an allogeneic stem cell transplant (using donor cells), instead?
No matter what you do regarding the transplant, do you use maintenance therapy? If so, which drug and in which dose?
It’s overwhelming!
Is this the time to be in denial? No way! Now’s the time to be jumping in with both feet in order to raise your myeloma IQ. Where you’re treated, by whom, and with what, can make a difference in how long you live.
When the dust settles, most myeloma patients can live a near normal life for two, three, four or more years.
Then the vast majority of patients relapse. That’s unsettling, but not necessarily bad news. There are so many treatment options at this point, pushing active myeloma back into remission – or, at the very least, long-term stability – is very likely.
Denial isn’t always a bad thing. Without it, one could metaphorically screw themselves into the ground worrying about relapse and what to do about it.
It is perfectly understandable – even advantageous – for patients and caregivers to relax and live their lives during these long remission periods.
However, there is one exception: after more than one relapse. Once you become a late-stage patient, all bets are off. There are no longer any clinical trials to provide your doctor(s) with a road map for what to do next. It all becomes about probabilities and art.
Art? Yes, now you’re at the point that a doctor is treating you more by feel than by relying on available data. Medicine becomes more art than science. Sure, there are individual study results, letting doctors know that a drug may work for a relapsed patient. But there’s no certainty there; the success rates of these drugs run in the 25 to 30 percent range.
Now is not the time to be in denial, cruising along, living one’s life oblivious to the ominous storm clouds on the horizon. Instead, I recommend sitting down with your myeloma specialist and developing a late-stage treatment plan before you’re too sick to do anything about it.
In other words, time is of the essence, even when you’re still feeling pretty good.
This is where I am in my myeloma journey. Feeling pretty good, but running out of easy options.
Next month, I’ll share my late-stage treatment plan.
Until then, 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 .
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Pat,
As always, a very well written and informative article!
In my 5 1/2 years of the myeloma journey, I must admit that denial was never considered an option. I found that delving into it and researching it to be more productive.
Best Luck to You!
We are just beginning the journey of mm (no capitals for this crappy disease!!) - my 56 year old husband as the patient, and me as the caregiver. You articulate perfectly what we have been going through. I cannot stress how important these articles are to me; both the information that is given and the heartfelt comments. Thank you.
I haven't been in denial yet, but I haven't had the chance, either. RVD worked, but we stopped it for an auto SCT. The SCT didn't get rid of my cancer, so now I am back on treatment, this time a double which includes a proteasome inhibitor in trial stages. That said, I am still hopeful that this treatment takes me until another generation of treatments might be available to me. And, as a young MM patient (38 at diagnosis), I don't think I am unreasonably hopeful for 20 years. My doctors don't seem to think so either. But I don't count on 20 years, if even two. I am living while I have the chance today!
Thanks for sharing your journey with the rest of us who are effected by mm, by being the patient or caregiver. It's been an extremely tough road to walk. Every time I meet someone in there 70's or 80's, I tell them I'd just like to get to your age. I was 50 when diagnosed. Just started maintenance January 2015. 2, 5, or 7 years doesn't quite get me there. Praying for a miracle.
Late stage treatment plan? How can that be? I remember like yesterday the first time I found the "Beacon" and read your encouraging articles. Wow, time has flown by, even with mm. I am looking forward to seeing your plan, but wish it was not because of getting to the point of dealing with more art than science with the oncologist.
Your articles have always encouraged me to dig deep and find out everything there is to know about mm. They have helped me choose treatment regimens and continue to live an enjoyable life with mm. Thanks for writing such encouraging articles. I look forward to next month's edition.
Good summary of what the myeloma experience has been for many of us or will be in the future. I believe it is really good to connect people like you who are in late stage with those who are newly diagnosed and confused about what this disease means for them and the challenges they will face ahead of them. I will be looking for your update on your late stage treatment plan.
You always are encouraging and informative. I appreciate your point of view! See you soon.
Pat's perspective on myeloma always many a times strikes a very personal chord. I look forward to his columns and wish him the best of treatment and myeloma control
Interesting comparison to art. In music school, I was taught that art was expression that transcended function. You make a clay or ceramic bowl to drink out of, then you add a handle. Then you add a glaze, and perhaps a lip and some decorative design. Then you add a base and some personalization. At some point, you reach a point of personal expression where most people don't want to actually use it and perhaps break it. They want to put it on a shelf as a protected piece of art. Something that, because of added features, passed function and entered the world of collection. Art is by its nature an expression that surpasses function. Not everyone agrees on what is art and what is not. But the creator sees in the piece an expression that is not bound by rules that don't seem to apply. I think your comparison is valid.
Oh Pat, so sorry to hear from your arriving at your late stage treatment plan. There are a lot of new insights in multiple myeloma. Hopefully one of them will help you and your oncologist in finding again a path to extended life expectancy.
Maybe I am wrong, but as far as I am aware, at least 90 % of multiple myeloma patients have gene abnormalities ranging from hyperdiploidy to translocations and deletions. During our multiple myeloma progress in time, our gene abnormalities will probably change and will direct our oncologist to another approach. To complicate the making of a good individual treatment plan, scientists agree now on multiple layers of our disease. Our multiple myeloma has a dominant variant, with underneath different other various multiple myeloma profiles.
To find the right treatment per mm person is really from the beginning a highly complex process. What are you targeting exactly and if you manage to keep the dominant malignancy in control, are you not also providing room for the boosting of the other variations of your multiple myeloma.
Pat, I will keep my fingers crossed for you. As for all newly diagnosed, please ask your oncologist for a bone marrow biopsy and a FISH analysis of it asap. No treatment makes sense without knowing exactly what you are fighting.
Thank you Pat for helping us to focus.
Pat,
I thank you for your column and your wit and advice, and candor. I sat with my oncologist for post auto SCT 3 month visit. What sort of maintenance drug to give me? It was a coin toss between Revlimid and Pomalyst, both of which failed me in pre-transplant drugs. I mentioned about T cell studies and trials, and he said "You can look in to them". I have to do the work researching. I have to take charge. After all, it's my life. I have heard the T-cell studies are working. So, I am taking your advice and researching my next chapter, just like you do. Thank you, Pat for making me stay focused!
Good article, Pat. Well written, informative and to the point.
Thank you,
Frank
Hard to respond to so many; I'll try to keep up! This one jumped out at me: "Late stage treatment plan? How can that be? I remember like yesterday the first time I found the "Beacon" and read your encouraging articles. Wow, time has flown by ..." No kidding, Eric! Can you please slow time down? Anyone else noticed it seems to be moving faster all the time? Sounds like RayOp is just the reader I'm trying to reach. And jglopic? Only 38? Sorry transplant didn't work. Mine didn't either. But it did re-sensitize my system; drugs that weren't working well before worked better after. Hope the same for you ...
Hi!
Thanks a lot for this column. Over the time I've read your articles, you've definitely encouraged me to be pro-active, and that really helps me a lot. Plus, I'm in a complete remission now and want to enjoy it (but not be an ostrich!) Hope you have a good weekend there in NW FL.
Sylvia
Hi Pat,
How about the measles vaccine trial at the Mayo clinic? I think that has tremendous potential for curing myeloma. If I am not mistaken, the vaccine worked very well on one patient, and The Mayo clinic was in the middle of another extensive trial that was supposed to end by December 2014.
Vijay
Hi Pat,
Great article. I'm six years into my mm journey. I spent eight months on dialysis with Velcade (a five day a week routine). Then Revlimid and steroids. A stem cell transplant followed up a year later, for the last four years I've been medication free.
I manage my health closely now as pneumonia is my greatest fear. This does not stop me getting on with life so my target is "to infinity and beyond" I don't think that unreasonable a goal in life.
Thanks again! Keep us updated.
Mervyn
Great article, as always. You are an inspiration to everyone wherever they are on their journey! Keep smiling!
Hi Pat:
I like your article because it's the facts about the disease and "in your face" reality. It's about fighting the MM and taking action and being smart to get the best outcome. I, for one, operate at this plane, many others don't, as their personalities are different, which is a good thing, because we all need each other and the comfort and also the data provided.
Its easier said than done. Balancing reality with enough time spent trying to live a normal life is so tough, don't you think?
From MGUS through Velcade to Revlimid has been about 5+ years. At the start, the balancing reality with normal life was not easy for me. Being an engineer, I wanted a plan, then execute it as perfectly as possible, and see great results in the future. However, I had to focus on one day at a time (Matt 6:34). This was the best advice possible for me, from a pretty smart Man who knew what his future held.
I do one day at a time. It works. Within that 24 hours, I focus on what is normal life for that day, and get it done, albeit sometimes slower than I would like. For example, I just painted our kitchen over a few days. I tuned up the air flow distribution in our house to minimize the temperature range from one end to the other. In Canada, we get cold weather, and it is nice not to have significant temp variations in our bungalow.
Point is, one day to the next is pretty much normal, things don't change much day to day, and we can focus on normal. Works for a retired engineer, it can work for anyone.
I agree, Eric. Part of me wants to live as normally as possible, enjoying simple day to day projects and chores. That's reassuring; almost comforting. But honestly, the time flies by that way--I desperately want time to slow down! Not sure I've figured that part out yet...
If curing a late stage myeloma patient becomes an art, I hope your doctors will create a masterpiece!
Was diagnosed with MM in 2011. Had the stem cell transplant in 2012 and been doing well. Recently had discomfort in my hip and was afraid it was MM but a doctor took X rays and said it's arthritis. As I am on Revlimid, 5 mg, I guess that could be a contributing factor to the arthritis, but I cannot take NSAIDS for pain as I take warfarin to prevent blood clots. I am uncomfortable but can live with it without the scare of mm. However, it would be nice to have some relief.
I like that, Annamaria! I never hear anyone talking about curing late stage patients; only newly diagnosed or smoldering. We can dream, can't we?
Jeanette, hate to bring this up, but X rays aren't necessarily going to reveal if myeloma is the cause or not. Have you ever had a PET scan? If no "hot spot" there, you should be able to rest easy (if enduring the pain is "resting easy"). I'd ask my doctor about it.
As Annamaria said, "I hope your doctors will create a masterpiece!"
Wow! These stories have moved me. My daughter was just diagnosed with MM. I'm learning as much as I can. After the initial meeting with the Dr. Then getting the basics, I was frightened for my 33 year old daughter. Faith shaken then went out and ate a really good meal, came home and cried some more. This went on for 2 days. It settled in after reading blogs, pamphlets, googling everything in site. Time for the big girl panties. Inside of the same week we were making decisions on what's next, treatment, Philadelphia or Chicago, who to tell, who not to tell, FMLA forms or not yet, reasonable accommodations for her job, soooooo much to think about. One thing for sure action, is needed and needed now. I was really glad to run up on this site. I am so much more informed and educated. I can't decide if I should share with her. I don't want her to be discouraged, but then again we are in this together. Suggestions?
Mom
Pat, I don't know if inspiring is the proper word in this case, but you have definitely given me much to think about and act on. From the transplant to medication used in some cases up to longevity. I just answered my own question from my previous post. I will be sharing with my daughter. Thank you all.
I am currently going into week 11 of Velcade / dexamethasone injections. I have an appointment with an oncologist regarding a SCT and this scares me tremendously. I have read about all possible side effects and it sounds gruesome. I currently work a part-time evening job and need it to help with medical costs and am afraid I will have to quit this job due to all the possible side effects tiredness and nausea. I would appreciate any feedback from those of you that have had SCT if this is something that is medically right to do. Seems so many have said it fails after a few months I don't want to go through all this which may seem like for nothing. I am in early stages borderline smoldering with no side effects of any kind right now. Feedback from those that have gone through this would help me tremendously in my decision. I am almost 72 have very high energy and am very active the thought of being sick and just sleeping or sitting in a chair all day for weeks is something I don't know if I can handle. Thank you.
Great to hear from you, Libby and Teresa. Or are there two different Teresa's? Anyway, I wanted to address Lynne's million dollar question. Lynne, the decision to transplant or not would be a lot easier if the average patient response was longer than a year and a half or two. I look at it this way: SCT is another major weapon, like Revlimid or Velcade. Two years response from either of those drugs is considered pretty good. See where I'm going with this? That's way I'm a proponent of waiting to transplant until relapse. But there are advantages to transplanting right away, especially at age 72. Tough call! Another thing about being diagnosed with myeloma that--dare I say--SUCKS!
Hi Pat,
I hope as others have said that your doc & you create a Masterpiece!
Your article was very informative to me. I am in Stage 3a with no high risk indicators. Can I hope for 3 or 4 years or longer? Or is that just folks in earlier stages? I was diagnosed August 2013 & was told the median life span is 29 months. I have just begun my reality check and don't know how long some folks have lived with stage 3 mm.
Please share your wisdom.
Dot
Dot, that's a pretty pessimistic prognosis. Who told you that? I know what the stats say, but I've found stage doesn't matter as much as genetic risk factors. I'm not a doctor or myeloma specialist, but if Revlimid and Velcade still work for you, no reason you shouldn't live a lot longer than that. We need some luck (ironic) to live longer; avoiding infections, blood clots and other complications. I think you should be thinking decade, not two and a half years! You may not make it, but with so many new drug options – and if immunotherapy drugs do turn out to be game changers – you could make it. I'm at 8 years. Getting tougher, but I'm digging in and I want to make at least ten years. I was between Stage 2 and 3 when I was diagnosed ...
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