Mohr’s Myeloma Musings: Reality Check
As I wrestle with the early treatment phase of this disease, it is my hope that by sharing my experiences I can provide some valuable insights to readers who are newly diagnosed and beginning treatment.
But before sharing in this column what I have been through as I finish the fifth cycle of treatment, I have two confessions to make.
First, treatment is tough, really tough -- far tougher than I ever imagined it would be. My approach to treatment was naively ignorant despite warnings from my doctor and all that I had read that indicated that the side effects of treatment would very likely be far worse than the actual symptoms of the disease.
Second, a positive mental attitude, an appreciative disposition, knowledge, and faith (things I wrote about in my last column) can only do so much to help one cope with the treatment side effects.
So with those confessions out of the way, what have the past five months of treatment been like?
Initially, the only side effects I experienced were associated with dexamethasone (Decadron). Like the pharmacist suggested, I took my first dose in the morning (on a Wednesday - a bad move from a work perspective) and proceeded to not sleep for the next 36 hours. And while I have suffered from insomnia for decades now, nothing prepared me for going for weeks on two to three hours of sleep a night. I tried several different sleep aids to combat the insomnia but found that they did little to improve the situation. In addition, they seemed to contribute to what I have found to be the most worrisome side effect of chemotherapy – chemo brain.
What I have experienced in regards to chemo brain is a complete breakdown in my ability to focus. I really struggle to stay on task. While I have never considered myself the sharpest tool in the shed, I have always taken pride in being able to undertake a task by methodically breaking it down into a step-by-step process, and then analytically completing it in a timely and accurate manner.
My secretary reassures me that there is no noticeable difference in my work product or ability to get things done. She insists that I am being too hard on myself, but I know better. The feelings of procrastination, confusion, and disorganization are real, and the apprehension and fear I sometimes now have of undertaking even the most simple of new tasks is something I cannot overlook.
I am constantly misplacing things. I’ve lost three pairs of reading glasses and two sets of car keys in the last three months. I have difficulty remembering names, even the names of people I have known for decades.
Knowing that dexamethasone can produce wild mood swings and periods of anger or aggression, I have gone out of my way at work to control how I interact with people. As the superintendent of a small school district, I am in daily contact with community members, business leaders, staff, and students. Every problem within the district eventually lands on my desk.
To date, as I deal with the myriad of problems that come my way, I have been able to avoid any dex-induced outbursts that might prove embarrassing to me or the school district. Unfortunately, my family has paid the price for this because, when I arrive home after working so hard during the day to avoid a “roid rage” incident, it doesn’t take much to set me off.
This pattern continued for the first three cycles of treatment until I wised up, moved my once a week "Dex Day" to Friday (much better for work) and asked my doctor to consider lowering the dexamethasone dose, which he did. These changes have had a positive effect as I am now sleeping much better and the mental fog seems to have decreased over the last two cycles.
Since starting treatment in November, the neuropathy in my hands and feet has intensified. What started as an occasional slight tingling sensation in my hands and feet has now progressed to a mild to moderate pain that can’t be ignored. Non-prescriptive remedies (vitamins and supplements) that I have tried have been unsuccessful in relieving the pain.
I just recently began taking Cymbalta (duloxetine), a drug commonly used to treat depression, diabetic neuropathy, and fibromyalgia. Thankfully, the pain and discomfort is gradually subsiding. While I welcome this relief, I am adjusting to the occasional mild nausea and fatigue that are side effects of Cymbalta.
Recently, I have begun experiencing leg cramps and back pain, listed side effects of Revlimid (lenalidomide).
Despite my litany of the mental and physical side effects of treatment, five cycles of treatment have had a positive impact on my myeloma.
My doctor is pleased with this response and, because of the success of the treatment, plans for a stem cell transplant in June can move forward.
While my condition and the side effects I am experiencing may pale in comparison to what many with this disease are dealing with, for someone who has been a model of good health, dealing with this phase of the multiple myeloma battle has been the toughest thing I have encountered in my life. It has been all encompassing, challenging me physically, mentally, emotionally, and spiritually.
I know this is the price we have to pay to treat this incurable disease. I have to admit that I currently think less of a cure for multiple myeloma, but rather, of that day when I am completely treatment free. If that is lowering somebody’s expectations, so be it. It is the reality I live in now.
Winston Churchill once said, “If you’re going through hell, keep going.” Good advice for those of us with multiple myeloma!
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published 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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Steve,
Because Cymbalta (duloxetine) causes fatigue, I take it an hour before bedtime with an over-the-counter sleep aid. While I don't always sleep well while on Revlimid, I believe these two medications help me sleep.
Susan
When I started my Revlimid regimen in February, I chose to start on a Thursday night. (One of the beauties of being an "old hand" at myeloma is I have no problem saying "I'm taking it at this time of day" and doing so.) I usually have Fridays off, thanks to a wildly flexible work schedule. The dex doesn't hit until 5:30 a.m. on so on Friday, and burns itself out usually Friday evening or Saturday morning. That has made it tolerable and not disrupted the sleep patterns too much. And it is amazing how much I get done on Dex Fridays.
You are wise to pick your own reality. That way you know the ground rules!
I can't stress enough Steve that you can see this thru. It's important to keep your eyes on the prize. That was my mantra the 7+ months I went thru chemo and, believe me, there's days that's very difficult to do. Very much relate to what you say about chemo brain. I read about it, tried to prepare for it, have kept my mind active thru much reading, puzzles, Words With Friends, and after 2+ years of completing chemo I still have my good days and bad days with it. At this point I simply remain grateful for each day that I'm able to enjoy. Also agree with you that it isn't about finding a cure, just getting done with treatment. Taking it all a day at a time.
Praying for you,
J.
When going through her induction chemo of dex & Velcade, they emphasized that my daughter drink lots of water. Even now on Revlimid maintenance after her ASCT, she still drinks a lot. It helps the leg cramps to be less prevalent. Chemo brain really upset her, especially since she was only 32. The inability to focus at work really bothered her.
I would like to offer a little comfort to any newly diagnosed multiple myeloma sufferers who might feel somewhat despondent if they have read of Steve's treatment problems. It does not always have to be so difficult. I had about six months of heavy treatment here in France, from January 2012, dexamethasone, Velcade and Revlimid. Side effects: mainly peripheral neuropathy in the feet, but seeing the weekly blood tests improving made it worthwhile. I decided against a bone marrow transplant -- thank God, that involves REAL chemotherapy, and settled instead for a stem cell harvest, the cells to be kept for ten years in case of a rainy day when a transplant might be the last resort.
So, after the initial six months I received Revlimid 10mg every day for the next year, a maintenance dose producing almost no side effects, and nothing else apart from some antibiotics and Zometa every 3 months. Finally, even the Revlimid and the antibiotics were stopped last August. I have been treatment free now for 7 month. I feel good and the monthly blood tests are pretty good too, everything within range or just a touch outside. The protocol aims at re-commencing a certain level of treatment when the need arises.
I can say that, during the treatment free months, my liver and kidneys have bounced back having declined rather. I have been fortunate that the disease has responded well to Revlimid. I hope things stay that way for a while. Best wishes to you all.
Hang in there! The last protocol I was on (Velcase/tanespimycin) lasted for 95 cycles over a period of five years. Get used to the idea you may be on treatment for a while. Currently, I am on a monoclonal antibody for the last year. Not bad for side effects - at least no Velcade! My numbers (IgG) are the lowest since I was diagnosed in 2003. It's going to be a long haul for us no matter what. Best of luck!!
Well done Paul; 11 years since diagnosis and it sounds like you are still going for gold! You give a bright hope to many others, including myself, people who increasingly believe it is possible to LIVE with MM .
Steve
Take a look at the articles on the Myeloma Beacon (portion below). This has provided me with great relief for neuropathy and cramping without having to resort to pharmaceuticals.
I have one year of Velcade, weekly infusions and 7 months of Revlimid and dex, with essentially no lasting neuropathy and no cramping. The nutrition suggestions worked very well for me. It is a constant regimen along with the chemo drugs.
Excerpt from Myeloma Beacon:
Guide To Nutrition In Multiple Myeloma – Part 2: Supplements
by Francie Diep; Published: Sep 2, 2010 3:48 pm
This article is the second in a two-part series about nutrition for multiple myeloma patients. The first article provides an introduction to nutrition for cancer patients as well as tips for getting the right nutrition. The second article describes sources and amounts of nutrients that are important for myeloma patients.
Taking nutritional supplements is common among multiple myeloma patients and other cancer patients. These supplements, including vitamins, minerals, and various plant compounds, may be important to keep the body healthy, aid in the treatment of myeloma, or to reduce negative side effects of treatment.
Steve, thank you for your interesting and drastic insights in therapy. I will start my treatment in 2 weeks. What are your most important tips after "hell"? What would you have done differently from your perspective now? I have read about some walking, that could help with insomnia. Good luck. Thomas
Steve,
As always, a great writeup. Congrats on your progress thus far.
I assume you are on a "low-dose" cycle for dex? I keep reading how dex just kicks peoples butts and it didn't really sink in until just now that, when studies talk about "low-dose" dex treatment, they are typically referring to taking it less frequently in an overall cycle, as opposed to taking less of it on any given day.
Beacon Staff: Have there been any recent studies comparing the use of a 40mg dex dose to a lesser dose like 20mg or 10mg? I imagine this topic was likely touched on in an another thread?
Everyone fighting this myeloma battle must always think about the people that are facing much tougher battles. Without listing the many different cancers and the pain and side effects that come with them, I can't help but feel a bit lucky that I have a cancer that in many ways can be managed for many of us.
Being retired with multiple myeloma, I got a job delivering flowers. Part of my job requires me to deliver flowers to many different Hospitals. I can't say I like being anywhere near a hospital, but it sure is an eye opener when I see the people that have it a lot worse. My heart goes out to them when I see their faces and the faces of their family and friends visiting them.
Even worse are the flower deliveries I make to Ronald McDonald House. When I see those children, I can't even think about my problem dealing with multiple myeloma. We are the lucky ones folks.
God Bless!
Hi Steve
My husband has been on treatment on and off for three years. CDT. CDV SCT then CDR and now back to CDV. Heavy going, but the will to live and the learning process you go through is a lesson in itself.
He used to take his dex in the mornings! Dextatude is what they call it in England! He has recently started taking it of a night, as he is awake all night, it does not make any difference! Just makes life far more peaceful in the day. You will become your own expert over time. Listen to your body.
I'm sorry Steve that your treatment experience has been so difficult so far. It demonstrates that side effects can range from minimal to quite significant with any medication for MM. I have been fortunate to be on the mild scale for all of the many treatments, including ASCT [autologous stem cell transplant], that I have been on after almost three years of treatment. While there are individual variations in the type and severity of side effects, there are many steps anyone can take to reduce the impact of the treatment on one's life.
Examples include lowering or dividing the timing of dex doses, herbal and supplemental remedies that are individualized, acupuncture (which I have weekly), meditation, prayer and other mind body exercises, and energy medicine techniques, optimizing the flow of Chi (prana, bioenergy) in a number of ways. Outdoor exercise is the best natural antidepressant for many, along with counseling and surrendering to what is. These and other ideas do not make it easy, but they sure make it more tolerable. Having practiced holistic medicine for over twenty years, practicing and experiencing it on myself has been very gratifying.
My suggestion is to work with an integrative/holistic medicine practitioner, or naturopathic oncologist (a real specialty!). Time itself improves the tolerability of most meds. So hang in there; it will get better, and embracing life in every moment will help you appreciate it more than ever.
Best wishes, Jan
Steve:
Been there -done that. Ian Forsyth and I are on the same track, apparently. Deferred stem cell transplant -- but collected lots of cells.
I have also noted that most health providers tended to down play symptoms during the induction / stem cell harvest prep -- and that can also contribute to the chemo brain crazies. You (and I) are indeed slipping some mentally -- but it's really not worth losing your mind over it. Bigger battles lay ahead. They know it.
Select your battles wisely, is the point.
However, there are still days when I am tired -- that I feel I have left the room and this guy, looking kind of like me is doing Foster Brooks imitations, and it's frustrating as hell.
Revlimid makes me tired and stiff and crampy. Like the "I just ran 20 miles stiff and sore". The Velcade hit my feet/ legs hard. They still hurt. Dex made me feel like I was on speed (amitriptyline at bed time helps). Sleep determines how much I get the crazies, or counters the lethargy to do anything, without feeling like I'm a total buffoon.
However, Foster Brooks shows up any time I am tired or get worn down, from the peripheral neuropathy / Revlimid cramps, after a long day.
You will find that the high energy approach is a waste, and you have to think much and carefully, before you move or try to do something physical or complex. Trade offs, my friend.
I have slowed down and regretfully expect much less of myself (physically) over the past 2 years. It's part of the grief process of this disease. I really don't like that requirement. A recent total hip replacement will hopefully help me get "moving" again.
However, one can still be pro-active in the face of the confusion and fatigue.
I took several months to analyze, plan, and set up the migration from Windows XP to Windows 7 Pro -- a bigger part of which was the re-design of my office / computer system -- knowing that due to MM I don't have the energy I used to, so it will be good to plan for those days that I am "foggy" and create simple tasks that can be accomplished by key strokes, voice recognition, templates, etc, rather than dictating each letter, editing, revising, printing, and otherwise re-creating the wheel every day.
Some days a flexible form letter is good enough, with an added personal touch or comment. An e-mail, pre-formatted, is an effective response. We have instituted a number of other time and energy saving measures, along with more efficient time capture / billing, that make me more efficient in the less time I have to work. Instead of 60 hrs a week, my goal is 40 or 45.
My ego was the elephant in the room.
I was "blind squirrel lucky" and fortunate to work with a brilliant man in this process, who had lost his wife to ITP a few years ago and then a brother-in-law to multiple myeloma in the past year. Helping ME (beat Foster Brooks) was his way of working thru his grief at his losses. My problem was letting him guide ME through the process. I was mad at what multiple myeloma took from me, to the point I was looking a gift horse in the mouth. Talk about chemo brain!
Ahhh, it is a process and every morning is a new challenge. But, I still get satisfaction at the fight, and I keep the odds more in my favor, by reducing effort expended and unnecessary time on the clock.
Rest is required. Be smart, and enjoy letting others help.
Good luck with your battle.
You will do well.
R
PS -- Eat tons of fruit and vegetables daily. The Velcade / dex combo made me so terribly constipated, almost to the point of needing surgical lavage for removal of impacted BM's. A disgusting side effect.
Steve,
Your story sounds so much like mine. It could almost mirror what I have gone through since December 2013. Although our drug regimen is different, the rest of our stories could be the same. I am on CyBorD -- Velcade injection weekly, Cytoxan 800mg weekly, and dexamethasone 40mg weekly. I do my dexamethasone on Thursday afternoons. Someone one called them Tyrannosaurus Dex days. I would agree totally. I did get fantastic news.
This last Thursday was my last week of chemo, and this regimen killed down my myeloma to the point that I am having my ASCT done by the end of this coming April 2014. Now I enter a new phase of treatment that is scary and exciting all at the same time. I don't know whether to celebrate or cry out of my fears. Everyone keeps reassuring me that the procedure and outcome will go just fine. Sounds great to me to have drug free remission for a long time if possible -- or even a maintenance dose of something to keep it at bay till they can find a real cure for this terrible disease!!
Keep chugging, Steve, and your eye on the prize!
Ian,
I have just turned 60 and am finishing my 5th cycle of induction therapy with RVD and was told that a stem cell transplant might not be an option for me in 10 years since health tends to decline when heading to 70. So I am scheduled for a transplant in May 2014.
Would you be able to share how you arrived at your decision to do a transplant in future, if needed, rather than sooner?
Thanks,
PattyMck
PattyMck,
What you are describing is exactly what three of my oncologists -- one is a myeloma specialist -- says. I am a prime candidate right now at 60 and in great health. They told me all about the studies of using drugs long term and how they are seeing excellent long-term survival results. However, what if my health picture would change at any time over the next months and years and it disqualifies me from an ASCT at that time?
Patty Mck,
Please forgive me for jumping in here, but it's late at night on a dex day, I can't sleep, and I genuinely believe I have something to offer to your question.
Hindsight is 20/20, and even through the haze of chemo brain, I remember like it was yesterday the difficulty of the decision I was going through in the autumn of 2012 before my November 2012 autologous stem cell transplant (ASCT). My M-spike level had dropped from 8.5 at initial diagnosis at age 60 in May of 2012 to 0.4 in October (0.3 would have been Complete Response for me), and my kidneys had cleared up from nearly-on-dialysis to normal.
EVERYONE around me - medical professionals, family, and friends - was urging me to go ahead with the ASCT right away. I didn't want to, but bowed to pressure. Frankly, I was afraid of the ASCT. So, my "tough guy" pride at overcoming fear, and rationalization that I was the one with chemo brain but they were all thinking straight, led me to go ahead. I had gathered enough information to know (or thought I knew) that, without CR, ASCT can be an iffy proposition, even with the Very Good Partial Response that I had achieved. But even so, they couldn't ALL be wrong, could they?
In the end, I mostly relied on an at-the-time recently published study that said that six cycles of RVD [Revlimid, Velcade, and dexamethasone] was the "standard of care" prior to ASCT. Guess who wrote that? A transplant doc. Not to disparage her, but looking back on it, I now realize, in a way that I didn't then, that it was the product of clinical research - the conclusion a result of analysis of aggregates and averages.
Yet one of the very first things one learns about MM is that it is an intensely individual disease. So who's to say that any individual should stop at six (or four, or seven) cycles of RVD prior to transplant? If one continues to respond to the initial therapy after diagnosis, why not continue it in pursuit of Complete Response? And only then THEN seal the deal with ACST?
Now, for the hindsight 20/20 part: After six months of pure hell, the ASCT did nothing to change my M-spike numbers. Going in, I was 0.4. One month later, I was 0.5. At my 100 day checkup, I was 0.7. One month after that, I was at 0.9, and went back on RVD.
So, not only did I sacrifice my Thanksgiving and Christmas 2012, and Florida snowbird winter to the prep for and recovery from ASCT, I just can't see what it did for me. The docs want to say, "Well, where could you be had you NOT done it?" But somehow, just listening to my body, and poring over the blood test stats over time, I'm becoming more and more convinced I should have exhausted other drug therapies prior to ASCT in an effort to get to CR before submitting to this incredibly invasive procedure.
Make no mistake, ASCT is a living hell. Not to put too fine a point on it, but I thought the Army had been tough, both mentally and physically. Yet NOTHING I had done earlier in life prepared me for the agony of not being able to even swallow water. I have NEVER been so low on Maslow's Hierarchy. And nothing prepared me for the shingles that were brought on by the way the ACST had left my immune system so compromised. No way I wish that on my worst enemy.
NOTHING prepared me for the acceleration of chemo brain that ASCT brought on. Unlike Steve Mohr, who wrote the article above, and whom I suspect is shining us on a bit (he seems like a REALLY smart guy to me - the self awareness he is showing in the midst of chemo is extraordinary, in my experience), I always did fancy myself one of the sharper tools in the drawer mentally, having been a 25+ year member of Mensa. So the fall was even greater for me than he describes. Do not minimize it - it is real, and it is frightening.
But back to results. After five cycles of RVD post-ASCT, my M-spike had once again dropped from 0.9 to 0.5, but has stagnated there. So I tried Kyprolis (along with Revlimid and dex), and while one cycle did bring me down to 0.4, I was having liver problems (elevated bilirubin levels) which the docs blamed on the Kyprolis. So I've now switched to Pomalyst plus dex (no Revlimid).
Results are yet to be seen, but here's how I'm now looking at it: RVD was effective to start, but could it have been more effective had I kept on with more than six cycles prior to ASCT, instead of having the ASCT and staying off RVD for five months? Could I have saved the Kyprolis and Pomalyst for later years?
To use a tortured boxing analogy, it feels to me like I had my MM on the canvas in the third round and was about to go for a knockout. But I let it up for a breather while I got out of the ring and took a horrible beating from a much bigger sumo wrestler for two rounds. Then, I got back in the ring with MM, but by then I was weakened and it had had time to recover.
I eventually had 11 cycles of RVD, counting pre- and post-ASCT, and it was effective through at least nine of them. I now just wish I had had them all prior to transplant. I tolerated RVD relatively well, except for neuropathy in my feet, but by playing with the Velcade dosage, that was minimized, and it is almost gone now that I have been completely off Velcade for four months or so.
I have now exhausted the traditional drug therapy "bullets in the chamber." RVD stopped working. I failed Kyprolis, and have yet to see what Pomalyst will do for me, and for how long. If it fails as well, I will have to go the clinical trial route and try a monoclonal antibody. I suppose I could have another ASCT, since I collected enough stem cells prior to the first one for another, but what's to say that those M-spike-0.4 collected cells will do anything better for me than the original set did? Especially with my ongoing non-CR M-spike levels?
I keep asking myself, what was the hurry for the ACST? I was "only" 60 at diagnosis. Yes, health can fail as time passes, but other than the MM and the now-resolved shingles and scary kidney condition, I was (and am now) in relatively good health. Why did I give up six of the best remaining months of my life to go through that hell so soon? What if I had just insisted on another couple cycles of RVD seeking to get to CR prior to ASCT and have the initial six cycles mean something more?
I keep thinking, over and over, that the best chance of getting to CR after initial diagnosis was RVD. And that if RVD was working, meaning that M-spike levels were going down, down, down, and not stagnating, why not just let them continue to work before ASCT? After all, we're not talking about years here, but months. Eventually, the RVD will either get one to CR, or you will see it quit working with stagnated M-spike numbers.
Bottom line: YOU make the decision. There is never going to be another time in your life when it will be more appropriate for you to be completely selfish and make this decision completely on your own after gathering all the information you can from as many sources as you can. And only YOU can judge what information/opinion is or isn't trustworthy.
Don't worry about offending anyone - no matter who they are - who is telling you what to do if YOU decide to do something different. If you resolve that I've taken the wrong lesson from my experience (after all, if history is any guide, SOMEBODY here will!), just ignore me. If your husband wants to control the decision, divorce him. If your parents tell you that they are taking you out of the will if you don't follow their advice, tell them you are going to die before they do anyway and to stuff it. If the transplant doc tells you it is urgent, just remember that s/he does transplants for a living and that they are all as human as anyone else - if all one has is a hammer, everything looks like a nail. Be true to YOURSELF.
I wasn't. And I'm paying for it today. I can't look in the mirror and say I did everything I could to exhaust every option I had prior to ASCT. And I wish to all that is holy today that I had.
Hi Steve, I don't think that there is anything particularly easy about having MM, and when one is on treatments, one has to deal with many discomforts too. The ASCT as described by Paul J. is a prime example of that. When and if you have one, please use the ice chips for hours to prevent mouth sores, when you have the melphalan. I did get to a point of being off of meds, for the last three years actually. So I have had a chance to rest and recharge my batteries. That is sort of a metaphor for me, since after repeated episodes of my car battery failing, and needing to get 'boosted', I finally just got a new battery. It's been that kind of a winter here! But anyways, I was able to get stronger again, in many ways.
Here's some sayings I used to tell myself...
'When the going gets tough, the tough get going.'
'It's mind over matter.'
'The toughest stake was Yukon Jake!'
Hope everything goes well for you, and it's great that you have the presence of mind to write up your journey. I liked your quote by W. Churchill too!
Hi Steve,
Good article. Thanks for sharing your journey with others.
I think what you've described underscores both the commonalities and the individual differences that patients experience with this disease. I have had a similar journey to yours in that I'm currently 59, born in Ohio, married, two kids (one at OSU and the other graduated from OU), and attended college and grad school here as well. Diagnosed with MGUS in 2006 and progressed to MM in 2009 with a left hip plasmacytoma which was radiated for 25 days. Any of this starting to sound familiar to you ... maybe too too?
After about 36 months of on again, off again, radiation therapy to bone lesions -- first in the left shoulder, then the right shoulder -- I went to systemic treatment in August of 2012. Did RVD for 6 rounds and achieved CR by November of 2012. Collected my stem cells in December of 2012 with the help of Cytoxan. Took me 5 days to get about 11 million cells. Wasn't a pleasant process.
At any rate, I decided to delay an ASCT until such time that I feel I need it. So since the end of 2012 I've continued without maintenance therapy but fortunately maintaining a very low M spike. That's been okay with me as that's been my chosen strategy: "treat it low and slow" is my motto at this point.
Like you, I have suffered a certain amount of neuropathy from the RVD and that does tend to get in the way of certain activites, although it has improved SOME over the past 15 months or so, but not nearly enough despite my efforts with drug therapy, supplements, and acupuncture. I may, like you, eventually try Cymbalta.
Unlike you, during RVD I couldn't get enough of Dex: I loved it! I had great success with managing its side effects by using Lorazapam. Many MM patients have had the same or similar success. It (Ativan is the brand name) is great for helping you sleep, reducing anxiety, and eliminating nausea, without side effects of its own. I highly recommend it!
To have an ASCT ... or to not have an ASCT? To use maintenance therapy ... or to not do maintenance therapy? These are two of the ongoing and certainly most controversial questions inherent to our disease. There are as many opinions on treatment as there are physicians you're willing to consult. So, in the end, after one educates themselves the best they can, the final decision is ... well ... at best ... your medical team's best guess on proceeding with treatment. Remember, no one knows for certain what will work best for any individual patient.
My advice is to keep on doing what you're doing: asking questions, seeking answers. I'd add to that: eat right, exercise, stay well-hydrated, find support person(s) you can go to when you need them, as your psychological health must not be under-evaluated or under-treated anymore than your physical health!
And remember, it's a marathon for most of us ... prep for the long run!
Best,
Steve Cochran
P.S. -- Again, Ativan can REALLY work well for folks like us. Give it a try if you haven't already!
Wow, Paul Jakubowski, you have really given me food for thought here. I have only had radiation so far, but there are spots on my spine, the doctor said chemo will need to start any time - a year at the most - when either my numbers rise or my pain increases. Then he said that once I start, he will send me to a transplant doctor.
I have been stressing about this so much. I see a doctor on Friday and need to ask for a referral to a myeloma specialist -- hopefully in Chicago, if insurance is ok with it.
I am afraid to start treatment too soon, but am also afraid to wait too long. I am afraid of having a stem cell transplant and wonder if it's worth it and who to talk to who can give me the right answers.
I am 50 years old and in good health other then multiple myeloma, I want to beat this disease very bad, but, at the same time, I want quality of life. I pray for a cure for myself and all of us. I pray for guidance on what to do. Wish there was just a standard way to treat MM.
Some of you like that you can be involved and have a choice in your treatment. Me, the more I read, the more confused I get. I just want someone to tell me what is the best thing to do for me and be right. Asking a lot I guess.
Like you said, a transplant doctor is for transplants. How many people opt out of the transplants?
Heck I am confused, all my counts are almost perfect, but I have been getting plasmacytomas for some reason. Why?
Steve, I appreciate your writing about the facts of how you feel without sugar coating things. This is what I want to know about my future -- the truth. After all, I am going to know it all eventually when I experience it, no hiding from reality then. I often read people say they had some side effects, etc, but they never really go into details about what the side effects actual are and how they deal with them. Good luck to you on your journey, praying for a cure for us all.
I apologize everyone for such a slow response to your comments and questions. I will try and make up for it in one post:
Eric: As I move forward I will definitely look further into supplements, diet, and nutrition. When I was first diagnosed, my family doctor reminded me of the importance of diet and nutrition. Unfortunately, my lifelong eating habits have not been a model of a good diet!
Thomas: The best tip I can give you based on my experiences is to not be afraid to request changes or alternative treatments if things prove difficult. My doctor reduced the doseage of dex upon hearing of my issues with chemo brain, and it has had an immediate positive impact. While I worry somewhat that the treatment will be less effective now with a lower dose of dex, my quality of life is improved and I will take that trade off. I don't think I would do anything differently other than be better educated about possible side effects and methods to deal with them
Multibilly: Yes, it is a low dose - 20 mg once a week, every week. As I indicated in my last column, it was reduced to where it is now - only 12 mg a week. I can't imagine taking 40 mg a week based on how it affected me!
John: I agree wholeheartedly with your premise that those of us with this disease are lucky that it can now, in many cases, be managed. I too am reminded of that every time I go for my monthly Zometa treatments and see, in the waiting rooms and halls, those who are suffering a far worse fate than I am. Having said all this, the fact remains that it is still considered an incurable disease, which is a burden that impacts all of us in some way.
R: Thanks for your advice - some good stuff. I agree, health providers tend to downplay the side effects of treatment. That is one reason why I didnt't mince words in describing my experiences to date, so that readers might get a more accurate picture of how it might play out. Having said that, I hope that some don't see it as a "pity party".
Patty Mck: My decision to proceed with a stem cell transplant was based on a number things. First, a solid trust in my doctor and the James Center and their reputation with this procedure. Second, personal conversations with individuals who had had stem cell transplants. Third, my age. Being relatively young (58) and in good health (apart from mm!), I prefer to go through the procedure now rather than down the road when I might not be able to deal with it so well. Finally, my research leads me to believe that a stem cell transplant gives me the best chance to achieve remission and to be treatment free -- however short that treatment-free time period may be.
Steve: Wow - our situation is eerily similar! Thanks for your advice. As I said above, I need to focus on diet, nutrition, and supplements as I move forward.
Not to beat a dead horse ... a stem cell transplant is indeed an individualized decision.
I'm 56 and have low/standard risk (t,11-14) myeloma with a good response to meds to date. Diagnosed in 5/12. Large plasmacytoma removed from anterior skull, with reconstruction (University Of Iowa Head & Neck Protocols), radiation, chemo (standard induction), etc. I have been stable at 0.2 M Spike, low SPEP/IgG, and ratios. I take low dose Revlimid. And I have about 10 more years to decide to do a stem cell transplant based upon current transplant criteria. I underwent the transplant workup, testing, etc, as part of the aphoresis process.
However, since 2012, it seems that the literature has become more "ambivalent" regarding the efficacy of stem cell transplant in the face of new meds and modalities (Revlimid, Krypolis, etc). The new drugs seem to have put the disease on a "chronic, but treatable" basis for many. Expensive. But so is a stem cell transplant.
Honestly, I was teetering on the SCT issue in early 2013, when the Mayo Clinic issued their landmark article showing a clear path (for me) to treatment process and a decision (Kumar, et al). Most of the treating / consulting doctors (myeloma specialists) at that time urged stem cell transplant, but several were clearly moving to ambivalent, based upon the same article reviews / studies I was reading.
Length of life/survival was the same. Slowing progression of disease was the only reason / purpose to consider SCT. If Revlimid, et al. will hold me, why do a transplant? There is no cure at present. SCT won't cure you. Look at the data.
With all due respect to the University of Arkansas (Barlogie, et al.), multiple transplants and excess chemicals is NO way I wish to live. Talk about Hell. I am having enough side effects from the minimal drugs I've taken to even consider "Total-Therapy" I, III, or whatever the latest is called. High dose cytoxan (2 large doses) made me very sick ... for weeks. Chemo brain (for me) was very pronounced after aphoresis.
I'm still good at and productive in my job. It gives me reason to get up in the morning. As a single parent, I didn't want my kids to turn into LPNs for my care.
Quality of life tipped me over to the "long-term maintenance" side, along with the emerging data / articles.
It is an individual choice. No pity party here.
It came down to: Why live as a "shell of a person", just to live a bit longer ... as a shell?
Good luck.
Hi Paul,
Your comments were very helpful. I go in tomorrow for BMB and additional tests.
Thanks,
Patty
Hang tough Steve. I would suggest we consider breaking up the steroids to more than just once a week.