December 17 2009 post: If you had a cavity, would you let your dentist pull out all your teeth? Nope, didn’t think so. Well, today I am going to tell an incredible (from my viewpoint) story, which might have had a different development, had I perhaps not intervened…sometimes I just cannot remain silent, even though I do try NOT to give any advice to my blog readers, I really do…but this was too much…
An upset and understandably very scared MGUS blog reader wrote to me on Monday night (I read the message on Tuesday morning before leaving for work) about his most recent haematologist appointment. For obvious reasons (of privacy), I cannot and will not provide too many details, including revealing my blog reader’s country (not Italy, that’s all I will say)…
Based on what he told me, it seems clear that my blog reader doesn’t have any CRAB symptoms. His protein and calcium levels are low, and he reports “no significant organ damage.” Ah, wait, let me make a slight amendment: he doesn’t have any “CRA” symptoms. As for the “B” in CRAB, the only test result that wasn’t ready on Monday was the skeletal survey, which should arrive within a few days, though. So we don’t know about the “B” yet.
He did receive some bad news, though. His bone marrow biopsy, or BMB, revealed 10% clonal plasma cells. And here is the shocker (again, from my point of view): his haematologist told him that he has now reached the boundary between MGUS and MM. If his BMB had been 11%, she said, he would have had to have started chemo immediately.
When I finished reading my blog reader’s e-mail, my first thought was that doctors should really undergo some serious sensitivity training courses. This particular haematologist instead must have attended the course titled “scare your patient out of his/her wits for no good reason.” I mean, here you have no idea if he has any bone lesions AND his bone marrow biopsy is less than 11% bad cells AND the rest of his tests are fine…yet you tell him that he might have to start chemotherapy? Where’s your common sense, for Pete’s sake? Besides, the implications of what she told him are absurd: if you have 10% cancer cells in your bone marrow, sit back and relax, you are fine. But if that number is 11%, then you have been plunged into the middle of a danger zone and have to undergo immediate treatment. A ONE PERCENT change in only ONE myeloma marker? Does that make any sense at all?
No, it doesn’t. And I have proof.
This haematologist must not be familiar with the 2002 report of the International Myeloma Working Group, composed of illustrious myeloma experts from all over the world. (see the list on page 756: http://tinyurl.com/yc5ucmw.) My blog reader’s story should remind us to have a copy of this report at our fingertips. Always. Okay, let’s have a quick look…
- The most important characteristics of MGUS: M-protein < 30 grams/liter; < 10% bone marrow clonal plasma cells and no end organ damage (including bone lesions).
- SMM, or smoldering myeloma: M-protein > or equal to 30 g/l; > or equal to 10% bone marrow clonal plasma cells and no end organ damage (ditto).
- As for active MM: high calcium and creatinine levels (the C and R in CRAB), anemia (the A in CRAB), bone lesions (the B in CRAB), in addition to other things, such as symptomatic hyperviscosity and recurrent bacterial infections. Or plasmacytomas. See Tables II and V in the report for more details.
Now, concerning Table V, you will notice that there are no numbers for the amount of M-protein in the blood or urine. The authors explain that Approximately 40% of patients with symptomatic multiple myeloma have an M-protein less than 30 g/l. However, 97% of patients with multiple myeloma will have an M-protein in the serum or in the urine. No minimal level of clonal bone marrow plasma cells was designated because 5% of patients with symptomatic myeloma have fewer than 10% plasma cells in the bone marrow. The most critical criterion for symptomatic or treatable disease is the evidence of organ or tissue impairment (end organ damage) manifested by anaemia, hypercalcaemia, lytic bone lesions, renal insufficiency, hyperviscosity, amyloidosis or recurrent infections.
So what is important for symptomatic myeloma are CRAB symptoms…
This excerpt is important: Definitions of multiple myeloma and criteria for treatment adopted by study groups in various countries have differed. Agreement to adopt a uniform approach would be advantageous in collating data internationally and carrying out treatment overviews and meta-analyses. An agreed-upon definition of symptomatic multiple myeloma requiring treatment would also remove the need for the use of older staging systems. (For more, see page 754.)
Even so, though, let’s never forget or let our doctors forget (!) that we, patients, are INDIVIDUALS, not numbers or statistics.
I told my blog reader to ask for at least one other medical opinion, if not two. I gave him the names of a few of the very kind and knowledgeable multiple myeloma experts that I contacted in 2005 (and whose names are on the Int Myeloma Working Group report, incidentally), when my progression toward active myeloma seemed inevitable and I began to get scared. Contacting those specialists was one of the best things I have ever done…
Hi Guys
Yesterday I went to have my first bone marrow test , and awaiting results …scared
I have had Blood Test /Urine Test .
I am told I have a full blood count , No weight loss , no sking rash
At this pointthey do not think I have multiple myeloma …but think …think I might have MGUS ( Smouldering ) I am perfectly fit ,do not smoke , occasional glass of wine …healthy
Urine sample has mo monoclonal and totally light free
No anaemia Creatine /Normal Calcium slightly raised 2.62 Iga raised 16.23 , ,and paraprotien 18.4g The paraprotein is Iga kappa Plasma viscosity 1.8.
So far they tell me the sings are good (If thats good) and now awaiting bone marrow tests …will report back .
Obvious question was ‘Life Expectantcy ‘ was told by Consultant at this stage being MGUS (Smouldering ) and no signs excpet for odd cold here and there and tired….. 5 years !!! Could be more but they cant give any more until bone marrow .
Will CURCUMIN help to stay away the Colds etc …or is that fiction ???
If anyone out there reads this …glad to have a problem shared …thank you
John Francis
John, I was diagnosed with smoldering MM a couple of weeks ago. I am trying to learn all I can to ward it off becoming active and will do all I can. I am also scared. I have started taking 4 grams/day of curcumin(Dr Best) with hopes this will help me. I was hoping to learn about the post here on Margret’s Corner where the person has been smoldering for 13 years taking his formula that was listed in the posting. You might want to read that post too.
All the years I have used the Internet I never knew at this stage what a comfort this is for me after being diagnosed .
Fit for all these years , full blood count , Cholesterol of 2.8 ,had all the Angiograms , Colonoscopies etc all clean as a whistle …and now being diagnosed a Multiple Myeloma . with nerve end damage .
I was told by The Priory Clinic Edgbaston that I had this problem and they wanted to put me on Chemo ,,,which right or wrong I refused
My Brother in Law has also just been diagnosed with Lukemia over a year ago and was put immediately on hundreds of tablets and Chemo . He is a destroyed man …Skin peeling off him like mad , lost all his hair , eyes sunk into the sockets , had to have cement into his joints and now lost the use of his left leg …the man I knew is not the man I see in that bed !!! On that basis I decied to TRY and fight it alone . Hence I so much want to hear from anyone out there that can help me or advise me what to do to turn this around or slow it down …ot is it to late >>
John Francis
Hi John
After reading your story I offer my experience with this disease. I was diagnosed in 2005 with MGUS, blood paraprotein level 14 bone marrow level 5%, no physical symtoms. The haemo advised it is a “watchfull waiting game” not curable but treatable if & when the time comes as set out per Margarets article.Tests done every 4 mths, blood marker levels kept slowly going up reaching 27.7 in Nov 2011.Another bone marrow sample revealed this level had increased to 40/80% plasma cells, all was shocked!! Xrays incl MRI of the spine showed no lytic lesions (holes) present in the bone.
Haemo advised more “watchfull waiting” due to lack of evidence of other CRAB symtoms but reclassified me as smoldering myeloma. Not happy about this “still do nothing” approach I hit the net & thank god I found this angle called Margaret where I researched a great deal.
I presented my GP & heamo with info on clinical trials using curcumin to slow the progression of myeloma both agreed to give it a go. Started taking 8 grams of curcumin a day with some liquid fish or flaxseed oil, modified my diet by increasing fresh vegetables, fruits, nuts, seeds, fish high in omega 3 oil,cut out high fat meats & all processed foods which are mostly high in sugar, salt,bad fat & white flour, walk for 60 mins a day to get the blood flowing & do some floor exercise.Other supps are resveratrol & high dose multi vitamin
My blood test at the end of Feb 2012 showed the paraprotein level had reduced from 27.7 to 24, that is the first time in 6 yrs it has reduced. My red & white cell counts are low but I am working to try to increase them. My goal is to remain stable like Margaret using natural products with nil side effects for as long as is possible but if I must go down the other path then I will do so with my eyes wide open still with the support of the natural products which may reduce any side effects.
Please review Margarets Corner fully & learn as much as possible about this diease, knowledge is power, stay calm & stay in control. Cancer is a huge problem thruout the world & most doctors are only trained to deal with it in one way. God bless & wish you great strength in this challenge.
Pete in Australia
Hi Margaret.
I have been reading all your posts after we exchanged a couple of emails in September and now very carefully the criteria for active MM. I had an IgG of 2500 and an M spike that went down from 2.1 on septmber to 1.4 on October but they found one
2cmx2cm lytic bone lesion on my sacrum in my MRI. So I am active after all even with no other CRAB symptoms. Very depressed facing chemo and a transplant.
Actively investigating alternatives.
Doing Natural also ..Started of only symptom Protein in urine…My M-protein was .o8 Dr don’t really know what to think all blood work showed low vitamin D had MRi all over no bone damage …Kidneys started putting out Protein after over the counter product of hair .I am loosing a lot of hair like I am not absorbing anything .but I also think it was bad hair dye..
Hi Margaret
I was diagnosed with smoldering myeloma a year ago and started taking curcumin and some other supplements you recommended. My blood tests were stable but not going down. In September last year Iwas sent to the nephrolog to test my kidneys. He was the first who realy gave me a diagnose in November.
The CT last year showed no Osteolyses but this year they made a MRI showed some because it is a different system. They told me that I had to start Chemotherapy because I had now CRAB symtoms.
I have not felt this good this year(because of the supplements) and I don’t have any problems.
I am already 72 and I want to live without symptons as long as I can.
what do you think?
Buongiorno a tutti. Non riesco ad accedere alla ricerca che viene menzionata, mi da errore…qualcuno potrebbe pubblicarla? Grazie