Living with smoldering myeloma
I am a U.S. citizen, 49 years old, married to an Italian, and I live in Florence, Italy. In 1999, I was diagnosed with Monoclonal Gammopathy of Undetermined Significance or MGUS, for short, of the IgG k type. My family doctor did not make it clear to me what MGUS entailed, and that it was important for me to have blood tests done every six months. Or perhaps I didn’t want to hear it then (denial?). At the time, I had two teaching jobs (teaching Italian in the morning and English in the afternoon…), so I had no extra time to do any research about MGUS. I promptly forgot all about it.
Until about four years later.
In 2003, another routine (so I thought) blood test showed that the amount of this abnormal protein in my blood had increased. My GP finally made the implications of MGUS clear to me, and sent me to a haematologist at Florence’s main hospital, Careggi, which has a well-known Haematology Center. I started looking up MGUS on the Internet. I soon had a clear picture of what might lie ahead unless the amount of paraprotein in my blood remained stable.
But it didn’t.
It kept increasing. Slowly but steadily.
My MGUS finally progressed to MM*, or multiple myeloma, in late 2005. I received the MM diagnosis on December 30, based on a BMB (bone marrow biopsy) done in November. At that time, 50 % of my bone marrow was compromised. Even though I had been expecting this progression, I admit that I was shocked to see the words mieloma multiplo (=multiple myeloma, in Italian) printed out on the test result.
Not one of my happiest moments.
*Note: I just realized (July 2010) that I should have explained that, on a formal level, in Italy there is no distinction between “smoldering myeloma” and “full-blown myeloma.” Therefore, even though I am smoldering, my official diagnosis, that is, the one on paper, is “mieloma multiplo.” My family doctor knows very well that I am smoldering; yet, when he has to write my diagnosis on any official documents, for instance my blood test requests, he writes “mieloma.” The diagnosis that is written on all of my test results is “mieloma multiplo.” But “unofficially,” of course, I have smoldering myeloma, not full-blown myeloma.
Update (December 4 2008). No, that was definitely not one of my happiest moments, but things have changed a lot since then. Curcumin entered my life…and with it many other good things…and I have also learned a lot.
I have learned to live day by day and enjoy the small but wonderful things in life that I wouldn’t even have glanced at/considered a few years ago. I have learned to stop and gaze at a beautiful sunset or at flowers blowing in the wind. That really sounds corny but it’s the truth.
I have learned to take life at a slower pace–the best way to enjoy it, in my opinion.
I consider myself very lucky. I have a fantabulous tall dark and handsome life companion (Stefano), loving and supportive family and friends, and, last but not least!, five affectionate and always-ready-to-purr cats. I live in a country that is good to its cancer patients (you don’t risk losing your job and health insurance if you get ill here).
And when I think of how I am now and how I was three years ago, I realize that I am much happier and better off now, as strange as that must seem. I have my blog, which means a whole lot to me. Without my blog, for instance, I would not have met Sherlock and other readers (perhaps not yet in person, but I correspond frequently with many folks now and have met about a handful so far). And if one of my dear blog readers/friends had not suggested that Stefano and I go to Farne Islands in April/May 2008, we would probably not have experienced the joy of having puffins whiz by and over our heads–the most amazing and exciting thing that has ever happened to me. Ah, the list could go on, but basically, life is better now.
Medical update. In January 2007 I had another BMB, which showed 40% neoplastic cells. Not much of a decrease compared to 2005, but I just recently found out from my MM specialist that that percentage is actually lower than 40%. I have no CRAB symptoms. No bone lesions. My MM specialist confirmed last month that I am stable. Yes, my cancer is still inactive.
Update (July 9 2010). Still smoldering, still stable. I have tested many supplements in the past few years, but curcumin is still at the top of my A-list. It is followed by fish oil, quercetin and ashwagandha. My motto is “keep smoldering!”
Hello Margaret,
My story is very similar to your. MGUS was seen in 1999 but no one told me what it meant. Spent years feeling awful. In 2006, fractured 4 vertebrae and was treated with kyphoplasties. I was anemic and my IGG was 2990. I was treated with decadron and thalomid for 7 months. I also had radiation on my spine where the thoracic vertebraes fractured. It was a horrible experience. My Igg dropped to around 400 and my dr. said I was in a very good place.
I adopted a very healthy lifestyle…lots of supplements, fasting, enemas, curcumin etc. I kept it at bay until Nov. 2009. My IGG took a jump to 4300 and my M spike went to 3.3. As much as I didn’t want to do chemo again, the jump scared me. I was not anemic, had no fractures, no renal problems, and no calcium issues. I did feel very fatigued though and also frustrated. They really push the chemo here, but my Doc lets me take the lead on what I am willing to do. SHe felt it was time to act as it was no longer smoldering. So I started on Thalomid and Decadron for three months and then switched to Revlimid and decadron in Feb. 2010. I did not handle the chemo well. I was exhausted most of the time. They dropped the dosage of Revlimid twice, down to 10mg. It was better, but still not fun. The Decadron days were the worst. My quality of life was lousy.
I have now plateaued. My Igg is 1776 (694 to 1619) above the normal range. and the m spike is 1.2 Dr. felt I needed a rest from the chemo as I was not tolerating it well and I totally agreed to go off the drugs. She would like me to do Zometta every month. I agreed to every other. Do you do Zometta?
So, what is your take on this?
If it were you, at this point what would you do?
I do have pain around my bra line and have for many years…worse since the fractures. It is controlled by Oxcontin 10 mg ER every 8 hours, Neurontin 200 mg every 8 hours, and ativan .25 mg every 8 hours. Because I am so tired I take 200 Mg. Provigil twice a day. I feel like a junkie but it helps with the pain.
Also, they put me on an antidepressant (pristiq the summer of 2008. It has helped alot. I was really down.
I want help in knowing what to take in supplements and how much. I have been inconsistent with the Curcumin.
Any suggestions will be welcomed.
Is there a difference in the Italian lab tests? Do our numbers seem similar to yours? I know the us may test differently so how can we compare with yours?
I would love to know how I can gain energy again. My doc says everyone who deals with cancer has energy issues, it’s just the way it is.
TY again,
Mariln
Marilyn Freeman
23 Jul 10 at 2:39 pm