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Thoughts from the "Good Patient"

Michael-Alps.jpgSo, you or your loved one or your friend has been diagnosed with myeloma.   You've never heard of it before.  You learn that it is a cancer of the bone marrow, of the blood.  You learn that it is incurable, that it's fatal.  You think, "Holy *&^$!, Why me?  Game Over!"  

You're upset.  You're frightened.   You're right to be upset and frightened.  It's OK to be angry.  It's normal to be angry.  panic-button.jpgBut, like anything else in life, moderation is the key, lest you become the Charlie Sheen of the patient and caregiver set.  Once you've had a good cry and a good yell, not necessarily in that order, it's time to figure out how you're going to fight the most important battle of your life, the battle for your life. 

OK, are you back yet?  Has your heart rate fallen below 180?  Have you plastered over the hole you punched in the wall with your head?  Good!  Now, sit down, take a deep breath, and join me as we take stock of the situation.  

pollyanna.jpg
First, whatever you may have read, life is not over.  At the risk of sounding a bit like "Pollyanna", Myeloma is no longer the "adios express."  Many patients live many many good years with myeloma.  For one, I was diagnosed over 20 years ago (in 1990), and am still alive and kicking (the picture above was taken last summer atop one of the Itailian alps overlooking Lake Garda.  I celebrate each year of victory over myeloma by attending the summer opera festival in Verona, Italy.  Lake Garda is just north of Verona.)  Life with myeloma can be incredible, with careful attention to monitoring and treatment, a good attitude and A Little Bit Of Luck.

You've just gotten through one of the most dangerous periods in the course of a patient's experience with myeloma:  the period that the disease is left to run willy-nilly because no one had any idea that it was there.  Think of all those planes flying towards Pearl Harbor with the entire island blissfully ignorant, suddenly stunned to hear the droning engines followed by the hail of bombs, bullets and explosions.  Nowhere to hide.  No way to stop the carnage.  Well, that was then.  This is now.  

Today, doctors are much more aware of myeloma and will often diagnose patients early,  before they have any obvious symptoms of the disease.   Those who aren't so lucky to have been diagnosed early can have all sorts of issues, including infections, anemia, bone or kidney damage, to name a few.  But, once diagnosed, there are so many effective treatments to quickly gain control of the situation-- stopping the progress of the disease and relieving the symptoms.  Learn the basics about myeloma by reading the IMF Patient Handbook.  Watch the "What Is Myeloma?" video on the IMF website.

There are emergency measures to get control of life-threatening and the more immediate threats.  These may include bisphosphonates for high calcium levels and bone issues, infections, hydration, radiation or surgery for bone issues.  Most patients won't need these but for those that do, they can make all the difference.  Pain management may be needed until symptoms are brought under control.  There is no honor in needless suffering -- take the shot, swallow the pills.

Once any immediate crises are resolved, there are many options for treatment for those that need it.  In fact, there are so many good options that it can be very confusing, as there is not one right answer.  But, having too many options is the second worst problem (years ago, there were too few options, and they weren't very good options.)

It is important to remember that many patients who are diagnosed will go for many months or even years before they need any treatment.  Scientists and clinicians agree that treatment is not needed until patients have specific types of symptoms that affect the blood, bones, or kidneys.  When it's time for treatment, there are incredible options, many of which did not exist just a few short years ago.  And, there are many new treatments being developed that should be available soon.  For a list of the current treatments and a look at the ones under development, check out the International Myeloma Foundation's Myeloma Matrix.

In my next blog entry, I will try and go over some of the most common upfront treatment options (from a patient standpoint) and some of the things to think about when considering options for up-front (first) treatment.  

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18 Comments

I was just diagnosed this Wednesday hours before I was leaving on a three week trip to Europe. I am 49 with a wonderful wife and two young sons. Your comments definitely helped ease my true panic and I hope to follow your blog over time. Thanks.

Just over the past year, 2 of my family members were diagnosed and now I just found out a few weeks ago that yet another one was diagnosed a few years earlier. This disease is running rampid and I really wish that they'll be able to find a solution soon. Prevention is key, but tell that to someone that already has it.

Tracy Sumner

I had a transplant 3 years ago last Feb and I feel great!! I take each day as a gift(":

Marie Crossen

In May 2012 myeloma & I will have been intimate partners for approximately sixteen years. I was initially diagnosed at Stage 3 (Durrie Salmon). I can't say it's been a lot of 'fun', but here I am, alive, enjoying all life can offer and without any regret. I�ve got to say; one does come to appreciate everything life is, even the bad stuff, in a way that just wasn�t possible in the pre-diagnosis world.

As it was back then and at 41 years of age, I was given six months to two years to live? The only real treatment available at the time was VAD with or without auto-BMT, which didn't promise much more than the predicted time remaining.

Fortunately, because I had some background in science, I was able to involve myself in a search for a better approach, hoping to buy time and give real scientists an opportunity to find better long term answers. As it was, I began a painfully slow research project in the local University�s Science Library. Shortly thereafter, quality internet and machines became available, which saved my butt because of the amount of ground I could now cover in a given period of time.

After chasing around a lot of dead end equations, I finally concocted a theoretical & then quite novel chemo-cocktail. In spite of the fact that my now retired Oncologist was a PHD and had a long history in cancer research, convincing the �system� at large proved to be something more of a challenge than I had anticipated.

Ultimately, the system�s lawyers finally agreed, because I was now Stage 4, I should be allowed to proceed with the cocktail on the basis it would be 'palliative' only. I should add; during the shakeout, physicians from a number of different cancer centers had warned, despite the interesting approach to treatment and being the cocktail itself was untested in any manner, the four agent combination, two being experimental, could prove to be quite lethal? Considering the almost guaranteed result of the other options, I decided to bet it all on the new and undertook the protocol. Complete remission followed quickly.

Unfortunately, the disease has now re-surfaced all these years later and is certainly going to necessitate some form of intervention? I�m at work on that problem now. We�ll see?

what the heck did you concoct that got such fabulous results???

Marilynne
igg kappa, stage 2, poor response to Rev/dex, now on cytoxan, Velcade and dex; dx 6/10, age 68

Dear Mike,
Your story and approach hits the nail right on the head. I was diaganosed with MM August 17, 2008. Sat shuddering in my Dr.'s office in tears. What? Not me, I'm just feeling a little tired. No wonder my hemoglobin was 7.3.

Treatment(VAD)started the next week when I went into kidney failure while at work and was rushed to the hospital. After release I went back to work and had Velcade once a week on the way home from work. I continued to work, coach football, fish, and even played golf through the chemo. The golf game suffered the most. In 2009 after a year and switching to Revlimid I was able to have a tandem auto-BMT at the City of Hope in Duarte, CA.

To shorten this up, I achieved remission, a deep remission and haven't skipped a beat since. I was coaching on the sidelines as soon as I was released from house detention, back to work within 90 days, back on the boats fishing again with 6 months. The golf game still suffers, but who's doesn't.

Keep moving forward, keep informed, stay busy, don't dwell, and be supportive to your fellow MM brethern.

i was diagnosed in march 2010 with myeloma. I have 4 children, the youngest was 8 at the time and I was panicked at the thought of leaving them motherless. I had an autologous stem cell transplant that ended up failing after 120 days. It was a tragic disappointment as I was expecting to get 2 - 4 years remission with this procedure. I crashed over this news for weeks, thinking that my life expectancy would be less than a year. I am now on Revlimid and Dex. I am in remission. The price to pay is the dex high/low. Especially the Dex low! I try to distract myself from the spectre of death by focussing on the best possible experiences in life. Since I have been in remission, I have taken the time to travel and see parts of the world that I would have saved for later in life. Next month, I am going to Iceland with my son as a graduation present. In August, I am planning to drive with another son from Vancouver to San Francisco. Knowing that every day is precious gives every experience a heightened state of pleasure. It is really productive to connect with other people with this disease as there is so much current research to be aware of plus it is reassuring to hear other patients' stories, and of course, encouraging to hear that there are survivors past the deadly 3 year mark. .Thanks, Mike for sharing with us.

Glad I found this blog...as a caregiver this disease can be hard. I made my husband, the patient, read everyone's blog to give him continued hope. You are all inspiring. Keep blogging. It certainly helps.

I was diagnosed April 18, 2012, I at age 43 have a wonderful family and husband I do have 1 one son that is 21 years old. I finally had the courage to go on this website, and to be honest it is giving me so much hope. I had did a bone marrow biospy and that is how the found it, i had three more test done and on May 9, 2012 I will go back to the doctor to see how things are what will take place next he will be sending me to Seattle Washington to the Univeristy of Washington. I would like any information send to me, prayer, courage and strenth i hope to hear from some of you.

My husband is 76 and has had M M for three years and took Alkeran and predisone for two years and his blood levels havew improvved. Hie protein went for 4,'ooo to 450 which is good. His platlets stay low but his hemoglobin is good now. For now no medication, but he has had platelets very low and hemoglobin to was down to 7 once and now is 13. We see the Dr every 3 months now and have monthly lab work. He felt very tired on the medicine and of course with the hemoglobin and platelets low he didn't very peppy. Don't know what the future holds, his is considered in stage 2. Would love to keep in touch with others to see what they are taking and their counts etc. Thanks

I have had multiple myeloma for 3 years and right now I am not taking any med's as all levels are within a decent range. I am 76 and was on Alkeran and Prednisone for two years. My protein has gone from 4,000 to 450 which is great. I would love to hear from anyone haveing M M and see what they take and how they are doing and how long they have had it.

Thanks to my bright, young family physician my elevated blood protein was watched for four years before I progressed to disease. After two therapies, I battled my fears and had the auto stem transplant. Nearly 18 months of treatment free remission. My disease has escalated again, am on a low dose of Revlimid, doing very well. I am four+ years past diagnosis, have traveled extensively, enjoyed every minute of my extremely fortunate life, wonderful family and friends. If I have one piece of advice it is this: don't try to go it alone. Tell your family and friends about your illness, accept their good wishes and help, be honest when you feel lousy or tired. I am grateful for an exceptional team of doctors and nurses and a very comfortable treatment center.

I would like to hear from those who were diagnosed in t
their senior years(age 70+).
thanks,
vm

Hi,
Does anyone know of a complementary therapist in the UK who specialises in Myeloma and who can give dietary / nutritional advice specific to myeloma? I realise you can't give a 'recommendation' as such, but I'd love to hear from anyone who's had a good experience with someone of this sort.
Thanks very much,
Louise

Hi Louise
I also live in the UK, diagnosed with MM this June, no idea I had a problem , which showed up from a routine blood test & my Doc did a full test, thank God, stage 1 , so could have been a lot worse
My Brother is a firm believer in cancer busting diets & has just sent me a book on the subject, not MM specific.
I intend to ask my specialist her views this Weds
Regards
Peter Stevenson


HI MIKE
GLAD TO SEE YOU ARE DOING WELL SINCE TERRYTOWN. I'M BEEN
WITH MM NOW FOR SIXTEEN YEARS. THE PROPER ATTITUDE AND
HOPE DOES WORK. I SEEM TO DO WELL WITH ONLY VALCADE.
I DID HEAR OF A NEW TREATMENT 'KYPROLIS' OR SOMETHING
LIKE THAT. ANY WORD OR OPINION ON THIS. I WAS SCANNING
THIS SITE FOR MORE INFO AND SAW YOUR NAME. HOPE THIS
IS A HELP TO US ALL. ROSS

I was diagnosed in 1997 during a routine physical. I remained smoldering until 2004 During that time I received monthly infusions of Aredia, then Zometa, and still suffered nine collapsed vertabrae. When I progressed to stage 2 I participated in a clinical trial for Revlamid. It was successful for 2 years, I had Velcade for a short time, it did not help. I had a auto stem cell transplant in 2007, which was WONDERFUL!!!! Four years without any medication!!!
The myeloma returned last year, and I have been on cytoxin and velcade infusions. We don't know where it is going yet, but my Dr. is very positive, he keeps me that way too. I continue to enjoy my life and my beautiful family, I function well on my own and participate in many activities. It has not been an easy road, I have broken my leg, pelvis, wrist (twice) shoulder, and had a hip repair, but I am determined to fight this disease with all my strength. Let us all pray for a cure!!!

my husband was diagnosed on Sep. 28th-29th 2010, in the ER. He was 40years old,and very ill when we went to the ER,they said a few more days he would have died!
He had 3months of treatment& was in remission,did 2more treatments.His DR sent him to a BMT hospital.
He had an auto transplant in April 2011& by Oct.2011 his cancer came back. Jan. 2012 he started new chemo for 2months,switched to another chemo for 4months,was in remission,he did velcade for 8treatments.
Now his cancer is back again.The treaments only work for a while& the MM comes back.
His DR is starting Kyprolis on Tuesday. He has a very aggressive form of MM,he wants to do a Allogeneic Stem Cell Transplant.His DR is a great guy but he is saying with out the allo stem cell transplant there isnt many options left for my husband.He isn't pushing us, its my husbands choice,he is leaning toward NO!
We are very leery of this because its just not done often. There really are any not stats on it.
Has anyone had an allo stem cell transplant?

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