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terryl1 12 years, 7 months ago.
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.
Dear Terry, Fadia and Mavis
I'm very interested to hear what you have to say about this but please remember that when you are in the watch and wait group, while it is a time of great uncertainty, it is not the same as being told that treatment is needed to save life and prevent major organ damage.
When I was told that I was at end organ stage, that is that my anaemia had reached a point that I would need emergency treatment in the near future I did not have the luxury to wonder which sort of treatment to have. It was quite simply a case of 'treat me with whatever you have so that I might possibly extend my life long enough to see my son through university' .
In the uk we use a system of evidence based medicine and while there will be mistakes, overall we get a pretty sound set of advice about treatment, no treatment is the best option until a number of criteria have been reached, then CDT gives overall the best life quality and quantity. America has a very different system. And I would also question the use of homeopathy, i am not aware of any clinical trials in this area yet.
Myeloma is an aggressive cancer, best left to the haematologists and their multi disciplinary teams.
I am sorry if this sounds a bit harsh but you must address these sort of questions to the doctors treating you and the expert nurses on the help lines on this site.
Good luck to you all
Helen
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 Mavis
Thanks for your post. I was due at the hospital today at 1pm to start chemo but rang and told them I needed more time to think over my options. Yes, in time, I may well have to go through the treatment they are offering but I think they are rushing it a bit in my case. If I wasn't been monitored it would have taken me at least 6 months to get along to the doctors with any presenting symptoms so I think a couple of months for me to do more research is not risking it too much. I know the only symptom so far is anemia (10.9). I will be looking at your posting 'starting CDT' later on this evening, thanks for that.
Fadia
Hi Terry,
Thanks for your leads. I was due to start chemo today but rang and cancelled ! Last week I spent the whole time in a 'daze' feeling like I had just been hit by a bag of hammers but now I am starting to realise it is 'my body' so it should also be my choice. It is so easy to just be so scared that you can just do whatever the doctor says. One great thing I did do was I met up with someone local who has had myeloma for 4 years and has been through the treatment and she also said she felt bulldozed into having her treatment within days of a diagnosis and although she did need to have it (because she had very severe presenting symptoms by the time she got to the doctors) however she did feel she should have had more choice as to which treatments to have. She was started on thalidomide and it affected her tinnitus so badly that she had to be taken off it within weeks and given something else. I do not like the idea of thalidomide because of the risk of blood clots but nothing else was suggested to me.
I shall be reading all of your links this weekend and thanks again.
Fadia
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
Hello Terry and Fadia
As I said in my first post these are serious questions for the experts. The way to second and specialist opinion is via the primary consultant or GP.
Helen
Hi Terry,
Thanks for your help. Yes, I have requested another appointment with my hematologist at the hospital. When I first heard the news I couldn't think of any questions to ask him because I was too much in shock. However, now I have had almost 2 weeks to seek more info about this illness, from good people such as yourself, I now feel in a much stronger position to have another appointment and run the CRAB criteria past him. He may well be right and I might need to start Chemo now but later on down the line I know I will feel much more at peace with myself if I knew I had done everything I could at this early stage to get the right treatment at the right time.
Many Thanks
Fadia
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 Terry,
Good idea about writing it all down because although I feel pretty lucid at the moment I can see how I might get flustered in the meeting, especially if he starts to bulldoze me into accepting everything he says at face value. I've decided if I am not happy with the meeting I will either ask for a second opinion from a specialist in myeloma and if they refuse, I will pay for a private medical report from one. Once I am absolutely sure that CDT is the best way forward then I will be at peace with myself about taking that route.
I will keep you all posted.
Loads of thanks
Fadia
Hi Fadia, I hope all goes well for you with your current doctor and he is able to answer your questions and address your concerns. I also hope that they grant you a second opinion for your own peace of mind. I would imagine the wonderful people on this site, or the nurse line, could recommend a top notch myeloma expert in your area of the UK if you go the route of a private consultation. Make sure you get a complete copy of your cumulative medical records for that purpose. Big hug. Terry
Hi Terry,
Saw my general/heom doctor yesterday and he has agreed to arrange for me to have a second opinion with a myeloma expert at another hospital so I am very pleased to be having someone else take a look at my results.I was thinking about the 'watch and wait' monitoring system you are on in the US and was wondering if you have been given any suggestions about things which may help keep you stable – such as eating/or not eating certain foods or drinks, taking exercise etc ? I have heard an alkeline diet is preferable to an acidic one.
Best Wishes
Fadia
Hi Fadia, that is great news. A second opinion, apart from an emergency situation (i.e. kidney failure, etc.) should be obligatory with myeloma, especially because there all numerous approaches and philosophies regarding treatment. In my case, I am separately monitored by two myeloma experts. I am in a special study of myeloma as a volunteer at the US's National Institues of Health near Washington, DC where the experts are trying to figure out how to halt progression permanently i.e. stop the myeloma stem cells from doing their nasty deeds every so often. I am tested regularly and I donate extra bone marrow aspirate, etc. for research. There are a few hundred of us in the study and I hope it bears fruit for all of us someday. I also am a regular reader of Margaret's Corner smoldering myeloma blog. Check it out. She is a very humorous American woman who lives in Italy and has many natural ideas on how to deal with smoldering myeloma. She is a big proponent of curcumin, etc. One of my myeloma experts believes curcumin could work and the other thinks little of it. Who knows? Fadia, I am glad you contacted me as I have been wondering how you have been. Well, off to celebrate St. Paddy's Day—my grandparents were Irish immigrants to the States! Big hugs and cheers from Haddonfield, New Jersey. Terry.
Hi Terry,
Can't believe St Patrick's Day is eons away now I think I have been living in the twilight zone since then such a lot of really confusing stuff has happened to me. However,I'm sure you have had all of this yourself over the past months. As you know I took your suggestion and organised a second opinion from a specialist in myeloma and that was about 3-4 weeks ago but the appointment still hasn't been communicated to me yet, so I am still waiting for a date, probably will find out this coming week. The most amazing thing – or maybe it's not- but it seems and feels amazing to me- and that is during the waiting time to see the specialist, my general hemo doctor has taken blood samples every week and for the past 3 consecutive tests my red blood count has bounced (his words) back up to over 12, so I am miraculously no longer aneamic. Since that was the only criteria which he based his chemo decision on he has now decided that I don't need another blood test for 6 weeks, until which time I am freeeeeeeeeeeeeeee ! Yikes, it seems to have been all hospital appointments and research for about a month and now I'm told I can skip it all for 6 weeks ! So feeling elated but also confused. Thanks for your suggestion of Margaret's Corner and her ideas about turmeric (curcumin)I raced down to the health food shop and have been taking it every day since Mar 18th. Hope all's well with you. Fadia
Hi Fadia, it is great to hear from you! I am happy to hear that your hemoglobin is now into the 12's—normal range. Hopefully, you will be able to get your second opinion soon. Why does it take so long to see a specialist? Is it just bureaucracy or is he/she just booked up? As for me, I am still in the "watch and wait" protocol. I did have some shoulder pain last month. My myeloma specialist ordered an x ray and, thankfully, no lytic lesions or anything related to myeloma were found. Please keep me posted about your situation. Best wishes and a giant hug from New Jersey!
Terry
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