Dear Karen,
Ive had smouldering myeloma for nearly six years and happen to be a consultant gastroenterolgist.But I am not surprised that you are confused about your diagnosis and its management .
When I was diagnosed after a routine blood test I had a skeletal survey and a bone marrow and after the latter was sent to a special centre ,I was told I required treatment and stopped work immediately . A day later I had a mri of the whole spine which showed no damage and I ve avoided treatment and have been on watch and wait ever since .My latest level of m protein is 28.5 and ive been told that over 30 is the indication for treatment (yearly mri no changes ).
More information to follow
Mike
hi molly
The Royal Hallamshire Hospital Sheffield .
Mike
Dear Carol ,
The evidence that delaying sct improves long term survival or pfs is not available and trials are under way which inevitably will a long time ?10years to answer the question
Inevitably if your sct is delayed you will be older and probably acquired some increase in morbidity (bone lesions,neuropathy etc)
Dear Dusk/Fiona It is good that some consultants tweak the therapy and guidelines. Clinical trials are absolutely necessary and provide the evidence ( mainly from outside the uk)that the above consultants may use to tweak the therapy !!!. In the uk there is need for more trials on using newer agents for induction because that does give more people accces to these therapies .However i do appreciate the ” locked in” feeling in a trial and hence a year after starting one trial, another may start recruiting which seems far more appealing .
Mike
Hi All,
I have watched this post with interest for the last few weeks and I think all of you have made valid points which are not necesarily contradictory . Dusks initial post is about his concern about what drugs are available in the nhs to treat his myeloma, not about the care that the nhs delivers and should be viewed as legitimate universal concern not a negative post .Albeit it does seem he has had some bad experiences so far which have added to his concern and may have coloured his view .
As you see I am doctor(qualified in 1971 and treated patients with leukemia in my first house job in the dark ages when that was the most feared diagnosis) and I have had smouldering myeloma for over 5 years(lucky me so far ). Until I had a normal MRI it looked as though I would go on ctd as BMPCs were about 30% in 2008 ;5 years later I Think I would now be offered ctd/crd trial with bortezemib if non responsive? is that progress?
Obviously I regularly review the myeloma research and have been encouraged by the relative explosion of new therapies being developed for myeloma . Indeed I think the potential for developing a cure or very long term control has become a realistic prospect . However my own personal view (and i am not a haematolgist and could be wrong) is that the first line treatment is critical in that it should aim to acheive the deepest response which could translate into the longest remission by which time even better treatment will be available .Generally speaking the newer agents seem to have less side effects according to the studies reported so far .
In an ideal world if my myeloma kicked ofF (awaiting blood results at present ) i would like to receive carfilzomib and pomalidomide …… in your dreams Michael!!!!
I think nice(what a misnomer!!)is presently deliberating about the availabilty of bortezimib as a first line agent for all.This could be a decision to reflect where we are in the therapeutic league .More trials for first line agents will be required.
I hope thats not too negative a view but realistic .
Mike
hI luciano ,
I hope you went skiing;smouldering myeloma per se should not increase your risk of broken bones unless a dexascan shows osteoporosis or whole body mri confirms bony lesions.I Have being skiing for the past 5yrs with SMM and osteopenia both declared to my travel insurance, with smm not covered and taken advice for a national osteoporosis centre.
Mike
ps get your m protein measured (and serum free light chain even better )as near a s posible to departure date But avoid long stays in america .
Your consultant should be able to support your case if the above applies .
Mike
hi Julie
My smouldering myeloma was found at (?routine?) blood test for monitoring blood pressure treatment and fasting lipids/blood sugar which also included a liver function test(LFTS).this showed a very high globulin and lead to follow up tests on the same sample (immunoelectrophoresis and immune fixation which are not routine at all !!!).The other test which may be performed routinely in other situations with a blood count is an ESR which is often very high .
The incidence of mgus is about 2% in 60yr olds but there is no screening programme but not all patients with mgus will have the above abnormalities on the tests above. The best sceening test would the serum free light chain levels and ratio but this expensive and not always available evenfor monitoring smoldering myeloma after diagnosis.
Significant back pain in mgus or smm should lead to test to confirm active myeloma.
(urine tests for bence jones protein are cheap for screening but my tests have been negative!)
Best wishes for you and your mother
Mike
hi sarah ,
I am very sorry to hear your news ,altho your back pain in retrospect was unfortunately significant after all.It confirms to me that a MRI of the spine at least should be part of the workup of smm and also performed on annual basis as part of the surveillance programme .Hope tx goes well .Are you having radiotherapy to the spinal lesion ? altho if you are still working I assume your pain relief is adequate?
best wishes Mike
hi mary
Bortezomib .a relative new agent that is likely to become a first line therapy in combination with another drug ( ?lenalidomide ) and it is a back up therapy in the x1 trials (i think?) . Given by intravenous infusion but now can be given by subcutaneous injections , does not cause venous thrombosis unlike thalidomide or lenalidomide > you need to look it up on this website for more info.
A lot to take in I know, so take it step by step . remember all the drugs have side effects but not everyone gets them.
Mike
hi mary .
I think that is a step in the right direction but understand your frustration.
mike
hi mary
Have you contacted the doctor in southampton to get his/her opinion ?if not I think it would be a good idea to help sort out the medication he requires .
mike
Dear Eve and Slim,
My son works as a physio in Whangarei,north island; so blood tests(november) willing, that s where we will be in late jan/early feb . We went to New Zealand back in 2010 when he was there before ,altho we did not go to Whangarei and did more in the South Island in our campervan.
mike
Dear Eve
Very good news and much more positive than your last reply to me in july?
Never give up indeed ;to which I would add dare to beleive that a cure/or longer term control is getting nearer (based on my reading of the published research over the last 4 years ;more treatments available and more in the pipeline ;availablity and access may be a problem as we ve discussed but paradoxically relapsers probably will get the better newer treatments quicker then those on their first treatment .)
May be in New zealand in february visiting my son ,so may see you there !!
Best wishes Mike
Dear Mary,
Both heparin and warfarin prevent further clots forming ;the clots usually dissolve themselves ( thrombolytic therapy To dissolve clots is only given in special circumstances .)Did he have a ct scan to confirm the diagnosis ? The doctor in Southampton may have an opinion on warfarin in regards to his myeloma therapy . Heparin can be given in the short term but warfarin is given in the longer term to prevent venous thrombosis . Hope this helps
Mike
Dear Mary/
The pulmonary embolism (PE) is a complication of therapy due it causing a deep venous thrombosis .It is a well recognised complication for which aspirin ,heparin injections or even warfarin can be given to prevent the above . So warfarin should not complicate further treatment altho it may require some adjustments of certain therapies.
Heparin is given by injection for about ten days in PE as well warfarin which is given by tablet not by injection .
I hope all goes well.
mike
Emma,
welcome
I am sorry however that at the age of 28 you joined under such circumstances .You have clearly tackled the adversity head on with your blog and are under the care of a very good clinical team .But despite this support, this forum should provide you with the extra help from people who know exactly what you are thinking and experiencing ;the people and their carers who themselves are on the myeloma journey ;the people who really understand . Very few of your contemporaries at the age of 28 can really understand the implications of the diagnosis of myeloma .Though sadly it is my impression that the incidence of myeloma is increasing especially in youger people having been previously considered to be a disease of a more aged population (<60yrs ). I perhaps should explain that I am a doctor of 64 wih smoldering myeloma of 4 years duration.
I hope the kyphoplasty was succesful in reducing the pain . I would be intersted to know what your experience of that procedure was like (as i suspect many others would on this forum.)Again I get the impression that this procedure is not widely available and indentifying a centre with experience /centre of excellence would be helpful for others.
Good luck with your treatment (?rollercoaster effect of steroids ?)
best wishes Mike
