Hi Fadia, that is great news. If it helps, go with a trusted friend or family member, who can also chime in if you forget to ask something. Also, write down any questions before hand lest you get flustered, etc. I wish you the best of luck and keep us posted. A big hug. Terry
Hi Fadia, I again would urge you to seek an evaluation ASAP with a myeloma expert and to also discuss all of these issues, i.e. CRAB criteria with your present hematologist. I am an attorney (in the US, a combination solicitor/barrister) and I always urge my clients to seek a second opinion if they have a reasonable doubt about my guidance, etc. No one is infallible. In your case, a second opinion should be obligatory. In your healthcare system, is there such an avenue? If so, seek it or at least run all of this by your current doctor and contact the Myeloma UK nurse or the IMF hotline for guidance. I can sense the pressure you are under and I wish you all the best. Terry
Hi Helen, you make a lot of good points. However, I respectfully believe Fadia should get a second opinion from an actual myeloma expert. I wasn't aware that there were any real differences between the US and UK medical systems. What was your point? The myeloma treatments here are excellent and there are numerous cutting edge clinical trials available. I am in one. I would expect the UK has the same. I also agree with you that a homeopathic approach at this stage is not warranted. Hopefully, Fadia will educate herself, call the hotlines and ask her doctors the appropriate questions. I personally was told in August, 2011, by a general hem/onc that I would need treatment immediately. He was admittedly not a myeloma expert. Three weeks later, I was told I was only smoldering and needed no treatment by a leading expert. Seven months later, I am, more or less, stable and being monitored carefully. I thank God I didn't listen to the first doctor and sought a second and third opinion from two experts who only handle myeloma cases. Perhaps, Fadia needs treatment now but a second opinion should be the order of the day in such an important matter.
Hi Fadia and Mavis, Mavis, I agree totally with your advice to Fadia. Fadia, the CRAB criteria are pretty fundamental. If you have normal calcium levels, normal renal function, only mild anemia (in your case, at 10.9 as a female, I believe it is mild) and no bone involvement, the presumption, at least according to my two separate myeloma experts, is not to treat but to watch and wait. My myeloma doctor at the U.S. National Institutes of Health is Dr. Carl Ola Landgren. He is one of the world's leading experts on myeloma and its precursor states of MGUS and smoldering myeloma. Google his name and read some of his research. He has written extensively on the subject. Also, go to Margaret's Corner smoldering myeloma blog. It contains vast amounts of info. on what you need to know vis-a-vis the CRAB criteria. She is an American woman who lives now in Italy and you will learn a lot there. All in all, you are the boss. I don't know how your medical bureaucracy works in the UK, but I would demand to see an actual myeloma expert and grill him as to why you need this treatment now. Go armed with the literature from the experts (Landgren, Kyle from Mayo, etc.) and keep us posted. Also call the Myeloma UK nurse line and the hotline for the US-based International Myeloma Foundation. Use Skype on the latter! Good luck. Terry from New Jersey.
Hi Fadia, Thanks for your response. The protocol generally is not to start treatment until you have CRAB symptoms, i.e. high serum calcium, renal problems (high creatinine), anemia (10.0mg/dl or lower) or bone involvment (lesions, etc.). Some doctors also use the CRABi criteria, namely, the small "i" representing recurrent infections. If I were you, I would seek an immediate second opinion from a myeloma-only doctor and I would question your doctor as to why to start treatment now if you have not hit the CRAB criteria. What was your plasma cell infiltration in the bone marrow? Are you high risk i.e. abnormal chromosomal problems, etc. My hemoglobin is 12.0 mg/dl. That is mild anemia for a 49 year old guy. What is yours? Fadia, be your own advocate and demand a second opinion and read up as much as you can. Try the Myeloma Beacon, the MMRF and the International Myeloma Foundation. Good luck and question, question, question the doctors as to why you are not just smoldering. Good luck.
Hi Tom, et al., I have been reading through the discussion forum and I have read many past and current posts. I find them very helpful and I note the ability to continue working for many members. That is my greatest fear, namely, that I won't be able to work and will have to go on disability or take an early retirement at such a young age. I have a wife and two young kids….well, you know the drill. The thought of that really depresses me (actually, scares the hell out of me!) as I love my work for what it is, not simply as a way to bring home the bacon, as we say. Are most people here able to work? Also, on this forum and the ones from the States, I read about the horrible side effects of dex. Isn't there a way to counteract those effect using xanax, valium, etc? Best wishes from daffodil and crocus covered Haddonfield, New Jersey….Terry.
Thanks again for welcoming me. FYI–there is one cutting edge trial which is occurring now at our NIH and several other locations involving carfilzomib, revlimid and dex for newly diagnosed patients. Apparently, the results have been very impressive in that the side effects are very limited and many people are going into CR in one cycle, i.e. 28 days. Some people think it may revolutionize MM treatment by obviating the necessity of a SCT, i.e. the Berenson philosophy. Also, a company called Oncopep is going to start clinical trials soon using a cocktail of peptides to try to halt myeloma progression. The peptides vaccine was created at Dana Farber Cancer Institute in Boston. It sounds very promising and should be recruiting volunteers soon. I have also read quite a bit about Dr. Matsui at Johns Hopkins University. He is trying to figure out how to actually eradicate the myeloma stem cell which could lead to an actual cure as can occur in lymphomas and leukemias. I think there is a lot of hope out there for all of us. Big hug. Terry from New Jersey
Hi Bridget and Mavis, I am very impressed with the site and the incredible support you give each other. I will definitely check in often. I am lucky they caught my myeloma inadvertently before bone and kidney issues arose but I have to be monitored closely as I have light chain only kappa type which hits the kidneys hard. I am not sure about the differences in treatments between the UK and the US, but I do know there are a variety of clinical trials available near me that are cutting edge. At the University of Pennsylvaia they have started an amazing trial involving genetically altering T cells to be reinfused into the patient after a SCT. It is very similar to the approach they employed last summer in a leukemia trial which basically cured two out of three men who had exhausted all options. The fact that they are now doing it so quickly in myeloma is great news. The lead doctor at UPenn is Carl June. My doctor at UPenn told me he expects incredible results which will be "big news". Let's hope he is right.
