Birds In Spring: The Story Of My Diagnosis And Initial Treatment
I thought I’d share with you a bit of the story about multiple myeloma and me.
Mostly, I’ve resisted conveying this tale, but I realized lately that when I meet people with myeloma for the first time, we quickly start talking about how we learned we had the disease and how we’ve been treated.
If I’ve learned anything from these talks it is that we are all so different – with treatments that can be widely divergent, and with greatly varied attitudes about how to deal with myeloma.
None of us knew what to expect at the beginning.
We spend a fair amount of time at first scouring the Internet for information. I think that so many of those checking into websites about myeloma are newbies desperate to learn about this disease. Once they have basic knowledge, an oncologist, and a treatment plan, many drift away from myeloma websites.
This column is directed primarily at those who are newly diagnosed. I’ve learned a fair amount from what others have told me – anecdotes that have conveyed things to me that I wouldn’t have gotten from my doctors, websites that address the disease from a technical perspective, or research studies and results.
I was diagnosed in 2006, and I was pretty far gone by the time anyone figured out what I had.
I was Stage 3, but worse than that, when I went to Memorial Sloan-Kettering Cancer Center in Manhattan, I was near organ failure because of sky-high potassium in my bloodstream. My kidneys were failing badly. This visit to Sloan for a second opinion turned into a two-week hospitalization.
What happens when you have too much potassium in your blood? It affects your heart function. Left untreated, it stops your heart. In a recent book, The Checklist Manifesto, Atul Gawande talks about how an anesthesiologist accidentally gave a lethal overdose of potassium to a patient, causing the man’s heart to stop during a procedure.
Gawande, who is perhaps the leading thinker right now on critiquing health care, describes what measures the surgery team desperately took to revive the patient. I recognized those measures. They were pretty much what was done to me in Sloan’s Urgent Care Center as soon as I walked in the door, including repeated injections of high levels of glucose and insulin in order to reduce the potassium level.
It worked for me, as it did for the person in Gawande’s story.
Getting my kidneys better was another story.
After I was admitted, they immediately started me on a regimen of Velcade (bortezomib), Doxil (liposomal doxorubicin), and dexamethasone (Decadron). Velcade at that point was only approved for relapsed/refractory myeloma, but one of the good things about a drug having an FDA approval – or “label” – is that it allows cancer centers, for example, to prescribe the drug “off label” – for uses other than its FDA-approved use. This enabled my doctor, Raymond Comenzo, to prescribe Velcade as a first-line therapy. I had received no treatment up to that point.
“We need to bring out the big guns,” he told Linda, my wife.
I credit Dr. Comenzo with a lot – saving my life and my kidneys. My kidneys today, while they are not perfect, are pretty darn close to functioning normally. It was touch and go for a while. Dr. Comenzo said at one point, “You were this close to dialysis,” holding up his thumb and forefinger with the tiniest of spaces between them.
My nephrologist during this hospital stay was a sourpuss. Each day that he came in to see me, he was rather cheerless. Until my kidney function started to improve as treatment progressed, then he lightened up considerably.
Then it was on to six cycles of the Velcade/Doxil/dexamethasone regimen, with various side effects that really didn’t slow me down that much. They did include a broken rib or two that resulted from an unrelenting and unstoppable cough, another side effect that went on for more than a month.
But the fun was just beginning.
In late September, it was time to mobilize my stem cells for harvesting, so I checked into Memorial (Sloan’s hospital component) on a Friday evening for an infusion and an overnight stay. Of course, they needed to do a chest X-ray, and that was an oops. A big oops. I had spots on my lungs. Everything came to a screeching halt. They needed to figure out what it was.
A bronchoscopy on Monday was inconclusive.
So I needed an open lung biopsy. I’ll let your imagination wander about that procedure. The diagnosis: Aspergillus (a fungus) and something they call BOOP (bronchiolitis obliterans organizing pneumonia). The doctors at Sloan put me on a more powerful antifungal medication than the one I’d been taking as a prophylactic, which obviously wasn’t up to the task, and hoped for the best with the Aspergillus. It’s a pretty common fungus, but it can cause a nasty infection if you’re immunocompromised, as people with myeloma are. They also gave me an antibiotic for the BOOP.
We all waited. I got better.
This delayed my first transplant by about four months, during which I was also unable to have any further treatments. Not the best of situations, but I held my own during that time.
I had autologous stem cell transplants in February and May of 2007. Autologous transplants use stem cells harvested from your own blood. The other type is called allogeneic, where the stem cells come from a donor. I’ve since had two doctors encourage me to pursue an allogeneic transplant because it is the closest thing there is to a cure for myeloma. It’s a bit problematic for me because I don’t have a good sibling match. That notwithstanding, allogeneic transplants seem to me to be quite scary – the risks are considerable, including a mortality rate than can exceed 30 percent.
Stem cell transplants, primarily autologous, are still the gold standard for myeloma treatment, but novel therapies are beginning to change that. Transplants are being delayed more, to be used not as front-line therapy but as so-called salvage therapy for those who relapse and are refractory (resistant) to the treatment they’ve been getting.
At this point, there isn’t much that’s evidence-based on the use of novel drugs versus transplant. This month at the annual American Society of Clinical Oncology conference, however, mid-trial results of an ongoing study indicated that stem cell transplantation remains superior to the novel drugs and the newer combination drug therapies, especially when it comes to progression-free survival, where the differences were significant.
For older patients, a transplant is generally not an option because it’s felt the rigors of the process can be too much for them. When I had my transplants, the general cutoff for transplants started around 65 (I was 61), but doctors have been pushing that upward toward 70 for certain individuals. More and more, they are taking into account a person’s physical condition as much as their age. I’ve met people in their late 80s and 90s whom I thought are in better shape than I am now.
For me, because I presented in such a far-gone state, doing the transplants when we did was pretty much a no-brainer. Every myeloma specialist we spoke with said I should do the transplants then and there.
The good news is that after my transplants in 2007, I achieved a complete remission and stayed in remission for three years. The immediate post-transplant period, especially in the summer and fall after the second transplant, was filled with infections and pneumonias, including some so serious they landed me in the hospital for several days.
To this day, because of my compromised immune system, the risk of infection is always lurking in the background, and I’m particularly vulnerable to respiratory infections. I’m sure my doctors don’t like the fact that I’m a regular train rider, and they really don’t want me on the New York City subway system, particularly when the cars are crowded and especially during flu season.
That gives you an idea of the early days of my life with myeloma.
If you’re facing a new diagnosis, I think my message is that you need to prepare yourself for a variety of possibilities, complications, and eventualities, some of which you’re not going to have heard about before they happen.
For me, I’ve tried to deal as best I can with whatever’s thrown at me and to just get on with my life. I said in a previous column that you have a choice – you can either control your life with myeloma, or your myeloma will control your life.
For me, there’s really been no choice.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Related Articles:
- Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
- Myeloma On The High Plains: Old Dogs
- Myeloma On The High Plains: My Eyes Have Been Opened
- Myeloma On The High Plains: Surviving
- Living For Lamingtons: Do I Have To Be Relentlessly Positive To Live With Multiple Myeloma?
Wow ... you are hero in my eyes!!! My wife, diagnosed 1 year ago has the same posative attitude and tenacity to keep moving ahead and not letting Myloma run her life. What a great story. Thank You for sharing.
Best Regards
Mike
Lou, your story gives me a great lift. I was diagnosed with cancer in late April of 2010. I had an extremely painful stiff neck. Doc's thought it was a pinched nerve, did an MRI, and found a tumor of the C2 and a tumor on the right frontal skull cap. They took out the skull tumor and found out I had MM. Did 22 radiation treatments on my neck, killed the tumor. During this time they did a BMB, but it was unsuccessful. They though that I was smoldering at this point. Wrong, did another BMB in mid-July was successful, and it showed 70% plasma cells. I was then diagnosed with 3rd stage nonsecretory MM. For those of you who don't know that means I don't produce the M protein chain like 99% of other MM patients. My husband and I joke about me always being different from other people. Immediately started a Velcade, Cytoxin and Dex. regime. Did it for 4 cycles. At the 2 1/2 month point, did another BMB and was at 6% plasma cells. This started the work to go for transplant. At the end of the 4th cycle another BMB and was at 0% plasma cells. Went and had my central line put in for harvesting and suffered my only hiccup during this whole process. I got a blood clot at the line site and a 30% collapsed lung, fun. Saved the line, did the harvested and went for transplant on Dec. 13, 2010. 45 days after an uneventful transplant ( no complications) I had another BMB, along with a light chain blood and urine test. It worked! Complete remission. My neck has healed up enough on its own, no more pain, but I still get nerve pulses through the left side of my face. I haven't suffered any organ damage, which has surprised my doc's. I go tomorrow for my 6 month post transplant BMB. I'm very positive about the results. I feel better than I have in over a year. Doing yard work, starting to rehab my house again and looking foward to our vacation this summer. I'm going to enjoy life and keep making my husband and 2 sons shake their heads and laugh at the weirdo they live with. Keep on smiling, Dee.
5
Lou, my Dad died in July of 2000 at age 82 of BOOP. At that time, we were told the only cure was a lung transplant and they wouldn't do that on a pt his age. So in 7 years they evidently found a way to at least improve your lung function. I've been told at Moffitt Cancer Center that lung dysfunction (COPD) could prevent me from being a SCT candidate. I'm currently early smoldering, 62 years of age, and doing everything I can to forestall the disease. Stories like yours help all of us who suffer the disease to keep an optimistic attitude. Every day brings progress. Every day is a new opportunity.
Mike -- It's good that your wife has such an attitude. I think she'll find too that a myeloma diagnosis gives you a clearer perspective on life...you appreciate life and its experiences more. I know I do.
Dee, my extended period of remission was great -- I was the old, "normal" me. I hadn't been sure that was ever going to be the case again after my initial diagnosis. And, yes, enjoy life -- that's what it's all about!
Thanks for having the guts to share your story, Lou!
Hey Lou,
Great story.
I am 37 years young; I was diagnosed with Multiple Myeloma 5 weeks back with Renal failure. I am told that my kidneys will start functioning soon. I am on valcade, dexo and thalidamide. I am already feeling peripheral neuropathy side effects and I also feel very very tired. However, I am damn positive that I am gonna get over this.
I live in India.
take care, Pradeep
Lou,
What a gutsy story - wow! Knowing you I'm not surprised by your courage, positive (yet stoic) outlook, and conveying the experience with such great descriptive writing. I have a better understanding of what you've gone through.
Broken ribs? Ouch. From the medications?
Is it a good idea to keep riding the train and NY subways and expose yourself to God knows what? On the other hand, you may be too brave and tough at this point for a germ to dare land on you!
Be well - not just empty words,
Susan
Kent...before they do a stem cell transplant, if it comes to that for you, they run you through all sorts of specialists and tests. Practically no body part is left unexamined. In my case, this served to reveal various little things wrong with me, which were interesting but not particularly important. The good news is that there are new drugs, and more in the pipeline, that should let myeloma patients live on many years even without transplant. Good luck to you.
Thank you for laying out the many challenges of MM so well, Lou. I am in my 4th month of treatment and am just starting to realize how unpredictable and complicated this disease can be.
My revlimid/dex stopped working after 2 1/2 months and I was switched to Valcade/Rev/dex - This week, I was taken off steroids because of GI problems - I worry that the valcade will be less effective without the dex but life is a lot easier without dex.
I also read an article in the Journal of Hematology that Green Tea can reduce the efficacy of Valcade. I haven't seen reference to this anywhere except in the UK. In fact, I was drinking green tea with my first Valcade treatment and called the doctor the next day and she confirmed that Green Tea is a problem. I am curious if others are aware of this. I just happened upon the article when researching valcade on line.
The Beacon has been a great resource for me - thank you all and keep watching and "living"
Pradeep -- नमस्ते
...you are so young to be burdened with this disease...but clearly you are ready to confront it on your terms -- I hope for the best possible outcome for you...
Mike -- Thanks!
Hi Susan -- with myeloma, you really never know what's around the next turn...like Gilda Radner said, "It's always something."
Hi Bethe,
You are right that green tea has been shown to interact with Velcade and that the two negate each other's anti-cancer benefits. Here's a Beacon article about Velcade and green tea; it might be about the same study that you refer to.
Additionally, vitamin C can have the same effect on Velcade (see the related Beacon news).
Therefore, myeloma specialists typically suggest you should avoid taking any antioxidant supplements on the days that you take Velcade.
Hi Lou! Thanks for sharing your treatments and problems. Best wishes to you...I am sure that with your positive attitude you will do well. Have been through the MM treatments for the last two years also, since was diagnosed in July of 2009 at age 58. i had a diagnosis of osteoporosis initially, without realizing that my bones had been weakened by the cancer. After a few months on Fosamax, i had several fractured vertebrae caused by heavy lifting and other strenuous activities, such as bagpiping! This caused us a lot of alarm and it was my family, who are medical people, and especially one daughter, who was a medical student at the time, who got me to take the blood test for light chain proteins. This test proved that there was a high amount of the 'M' protein in my blood, and our oncologist took it from there, doing a bone marrow biopsy and other tests. At diagnosis, my 'M' protein was at a level of 58, and my bone marrow was 50% full of cancer plasma cells. This of course was terrifying to me and my family. I received an incredible amount of emotional support from family and friends over the last two years. After induction chemo on velcade plus 'dex', I did undergo an autologous SCT in Jan. 2010. After these treatments, my 'M' protein level had fallen by over 95%. After 100 days out from the SCT, I was put on 'maintenance chemo' of a low dose of Revlimid, which has brought the 'M' protein level down to undetectable levels. Thus my MM is now 'inactive'. Thank God for that...and thanks to our medical system of excellence here in Calgary, Canada, which has brought me to as good a condition as possible after the ravages of this cancer. Still have some issues with my back, but at two years on, am very hopeful that things will continue to go well with my health. After one year, i was eligible to receive 'non-live' vaccines from the public health clinic, such as flu, polio, tetanus, Hip-b, Hep-b, Diphtheria, pneumonia shots and more. Next year, I can receive the measles-mumps-rubella, shingles, and any other 'live' vaccines. My immunity has been quite low at times when taking the chemo meds, and have tried to avoid crowds with people sneezing, etc. I also had a cough that lasted quite a few weeks, and was exhausting me, but found that with the addition of a pill that coated the stomach (since I was taking low dose aspirin) it cleared it right up. The cough had been due to acid reflux! Yikes, what a learning curve it has been ... I am now in a whole new decade of life
) with a new immune system building up, and hoping for the best. Take care and thanks for sharing...I like to read the 'Myeloma Beacon' and find out what is new.
Hi Lou, Your story pretty much relates to my Husbands experience, although he only got 8 months remission after the 1st stem cell, due to 17p deletion. He has just had his second stem cell transplant and will go for a donor stem cell transplant in 2 weeks. He has lost over 20 kilos in weight so far but is starting to put it back on now. It is a hard path to tread and as a carer I can not begin to understand how you manage to cope with all the treatments you have to go thru. On his second stem cell transplant, he had 2 IV poles with 8 machines attached and a spaghetti mess of tubes into a central picc line! It is amazing what can be achieved today and I thank God for all the doctors and researchers that work tirelessly to give us hope for a better future. It is great to hear how other people cope with it all!
Nancy -- My immune system is pretty underperforming even now...I'm now going in for monthly infusions of IV/IG (intravenous immunoglobulin) to boost my immune system. It's an expensive proposition, but I have been fortunate to have extremely excellent insurance. For many folks, that's just not the case here in the states, and I often read about fund-raising events to help someone pay for the treatments. That's an awful burden to put on patients and their families who are facing a life-and-death struggle, don't you think? At the same time, there are a lot of us here who have insurance that very well takes care of cancer treatment, and I am troubled by any prospect that would change that, perhaps into something less. This is a dilemma. It's great that your health system in Calgary has taken such good care of you.
And, best of all: Congratulations on your remission. Isn't it a great thing to achieve?
Hi Joni -- yes, myeloma and treatment takes its toll on patients -- and their caregivers and families...I wrote a piece last December, by the way, in which I said that I think multiple myeloma is often harder on the caregiver than it is on the person with the disease. I continue to believe that. Oh, and we have a name for that annoying, take-me-with-you-everywhere IV pole. Unfortunately, I can't repeat it here.