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I have been living and working overseas for many years. In January 2021, at the age of 75 years, I received a diagnosis of myeloma after a routine blood test.
Following a bone marrow biopsy (January 2021), my percentage of paraprotein was about 22%.
Other key parameters (January 2021) were IgA (30), Beta 2 (2.3) and Hb (120).
One year later (January 2022), the same parameters were IgA (30), Beta 2 (3.1) and Hb (110).
All other parameters were within (or near) range, or little changed.
My worry is the Hb. Although the latest result, sampled in yet in another overseas country, possibly alternative reagents, etc. may account for the sudden decline in Hb. Earlier in October 2021, my Hb was a more reasonable 116. My feeling is that Hb (110) could be an outlier. Note that my ESR is always high at about 80.
My FISH test in January 2021, showed that I had 1q amplification (3 or 4 copies). Most studies categorise more than 2 copies of q1 as high risk, though some studies do not include 1q as high risk.
After talking to 3 different doctors in 3 different countries, my plan is to return to the UK for a full assessment. Overseas, I have noticed a lack of expertise and a rush to put me onto Dara, possibly related to their financial gain.
I know that treatment in the UK would be as a private patient.
My first question to the Forum is where in the southern part of the UK would you recommend for diagnostic excellence in myeloma? I would prefer to avoid Harley Street and London in general, because of higher costs including accommodation, etc.
Any ‘ballpark figure’ on cost appreciated as my resources are sufficient but not unlimited.
My second question to the Forum, if I started treatment – any idea on minimum period (how many months in the UK) and again a ballpark figure on cost? I may follow up with treatment overseas, and not in the UK. At least I would be confident of going in the right direction with a recommended treatment from the UK.
Any comments on my test data (in first paragraph above) would be interesting and appreciated.
John
In relation to your second question ( and I noted preference to avoid London which I query as it’s all outpatient based and there are some of the top UK Myelona doctors in London )
I went private and the cost of diagnosis , tests , 8 rounds of RVD and a Stem cell transplant was in the region of £150k – I did this with HCA at the Shard/ London Bridge Hospital – they have Myeloma specialists. I have now switched to the Royal Marsden who have an excellent myeloma team ( private and NHS ).
On how Long the treatment of myeloma lasts this is not a quick fix ( Myeloma is currently incurable but very treatable for many of us for long term periods ) – it took me about 9 months from diagnosis to transplant and I am still in main treatment that requires hospital checks every 2 months ……… at 76 you will need to be in good physical condition for an SCT and this is worth discussing with your consultant early ( if you choose to go down that route)
Given you were diagnosed in Jan 21 why have you not started treatment ?
I find the resources of http://www.HealthTree.org very helpful and suggest you work through some of the HealthTree Universith modules to help you underrated some of the questions your first question asks ?
Hi Rosary,
Thank you for your detailed response, especially the very useful mention of the two hospitals.
I will certainly consider arranging a trip back to the UK, for an accurate assessment including treatment options, as a minimum.
I travel a lot, so tying myself down for many months will be a considerable change in life style; especially if in the UK, not having lived there for some 40 years.
I think I would probably opt for follow-up treatment in Asia, not sure where. Lately, I spend a lot of time in Thailand, so Bangkok is probably my first choice.
The consultant who first gave the diagnosis in January 2021, seemed to think that it was too early for treatment, taking into account the side effects of the drugs. However, my recent decrease in Hb would probably change that opinion.
Yes, I have viewed a number of videos on the HealthTree site and I was amazed at the information available from the various experts – what a fantastic resource for anyone with myeloma, and so well presented. It does make you aware of the complexity of “multiple myeloma”.
Once again, thank you for sharing your experience.
John
Hello John
I haven’t got experience of private myeloma treatment, although I did consider such. If Surrey/South London is acceptable to you, I can recommend that you see Martin Kaiser at Royal Marsden. He is one of the truly world class myeloma doctors in the UK, and I believe he sees patients privately.
If you want to stay clear of London altogether I can recommend Charles Crawley in Cambridge as a myeloma haemo oncologist who treats myeloma patients privately as well as on NHS. He has good knowledge and an excellent rapport with patients.
If you are undecided in which country to live whilst being treated, it may be worth discussing this which whichever UK consultant you seek a second opinion from. New myeloma treatments are being FDA approved very regularly, but they are not necessarily widely available outside the USA. I had some contact with a patient treated (privately) in Germany who seemed to have good access to novel treatments, for example, whereas patients in Italy, I believe, do not.
I hope this helps. Best wishes.
Hi John, I’m one of the Peer Volunteers for Myeloma UK and have been a myeloma patient for a number of years.
I’ve been treated at a number of different hospitals and one thing I’ve noticed is that blood results (all parameters) will vary slightly between labs, so that trends are only really identifiable if the data all come from the same place. So although your Hb is certainly out of range, the variation in the numbers you quote could be accounted for by the tests being done in different locations.
I have had some private treatment at the same place as Rosary – the care was excellent but I can’t comment on cost as it was covered by insurance.
Many thanks to Rosary, Mulberry and tw744 for sharing your comments and advice.
I have started treatment at a local hospital in Thailand. It is actually a public hospital but perfect in terms of travel logistics and I am quite satisfied with the experience to date. It does get crowded but everyone finds a seat and waits patiently for their turn. In addition, at some stages the payment of a small fee gets priority treatment at a “Premier Clinic”.
My doctor at the local hospital has had discussion with a leading Myeloma doctor in Bangkok. The Myeloma doctor in Bangkok has spent 2 years at the Dana-Farber Cancer Institute (Harvard Medical School), and is a central figure on Myeloma issues in Thailand. I have met with this Myeloma doctor in Bangkok and we agreed that travel logistics made the local public hospital a better choice.
I am presently on my first cycle of VRd. My once a week Dexamethasone has been reduced to 20mg (not 40mg) as I am 76 years old. I am not experiencing any significant side effects. Lenalidomide tablets sufficient for 21 days were bought from the public hospital and very expensive. I have since bought a 30 day supply on-line from India at a considerable saving. An import licence is required to bring drugs into Thailand, but apparently a tourist can hand carry a 30 day supply of drugs into Thailand for personal use. I’m told that importing to Australia and the UK are much easier options. My 30 day supply sourced from India, was held up at Thai Customs and I had to open up the package in front of customs and pay a 10% tax.
Immediately prior to starting VRd treatment, I had a second bone marrow biopsy.
Over a period of about 15 months, my percentage of plasma cells in aspirate had increased from 23% to 29%; my K/L ratio has increased from 21 to 123. Over the same period, my HB has decreased from 120 to 110. All other parameters are stable or normal.
I note that on this Forum reference is made to a patients “paraprotein levels”. The doctors that I have seen show no interest in my “paraprotein levels”, they seem more concerned about my K/L ratio. I believe both values are obtained from the same “Nephelometry Test”. Any comment on a ‘this monitoring issue’ would be interesting. I have not been advised that I have light chain myeloma (if that is relevant); my most serious complication appears to be 1q amplification.
I did contact The Royal Marsden Hospital. They requested my test results prior to a meeting; all seemed reasonable and sensible. I’m still holding that as a backup plan. Basically, I want to see how the next several rounds of VRd progress, and then decide the next treatment option. Probably my option for transplant is more and more limited as the months pass. My two doctors in Thailand were not enthusiastic about transplant due to my age of 76, despite my overall good health. My perception to date is that several rounds of each of the several drugs now available over several years, will give a life expectancy of 5 to 10 years. If you have one or two negative genetic issues, then transplant does not really extend life expectancy…
Hi John
I’m glad to hear you’ve got started on your treatment. Your description of the ins and outs of arranging local treatment in Thailand makes one realise once again how lucky we are over here with the NHS.
With regard to your query about paraproteins/light chains, there is a useful explanation on this site in the ‘Ask the Nurse’ section Ask the Nurse – Paraproteins and free light chains. Around 20% of myeloma patients do not secrete a paraprotein and so disease progress has to be monitored using the light chains only – your doctor will be able to tell you if this applies in your case. As you say, light chains are assessed using Nephelometry and there is another method called Turbidimetry.
Good luck with the VRD – let us know how it’s going.
All best
Tim
Tim,
Thank you for the above link to the ‘Ask the Nurse’, and the section on ‘Paraproteins and free light chains’. This gave me another link to the Myeloma UK Infoguide – “Tests and investigations in myeloma”.
This Infoguide included the following two tests:
1 Immunofixation electrophoresis (IFE)
The IFE test gives more detailed information about the type of immunoglobulin being produced by myeloma cells. Kappa and lambda light chains can be detected by the IFE test, but only if the light chain levels are increased a lot.
2 Serum free light chain (sFLC) assay
Looks like Test 1 would be for “paraprotein level”; looks like Test 2 could be for K/L ratio, etc.
It does appear that this Infoguide puts equal weight on both ‘paraprotein level’ and ‘freelight chain level’ for monitoring purposes.
The reason I get a little pedantic on this ‘test name issue’ is that being overseas, I need to be more clear what testing they are doing (due to language difficulties), plus the propensity (in some private hospitals) to view the foreigner as a cash cow waiting to be milked.
Some may regard (including myself) that my above earlier comment (repeated again below) is a little too negative:
“My perception to date is that several rounds of each of the several drugs now available over several years, will give a life expectancy of 5 to 10 years. If you have one or two negative genetic issues, then transplant does not really extend life expectancy…”
I have spent many hours reading MM articles online. I do give up at some point, especially when statistical nomenclature are invoked – I can only cope with ‘n’ and ‘mean’, etc.
I also give up when complex theories are attempting to explain complex (genetic) phenomena, using paradigms – OK I accept that these documents are for the suitably qualified.
I have read that many patients in USA opt for ongoing medication rather than one off transplant? Cost may influence this, but I note that also the likely hood of early return is a discouraging.
I am fortunate to be in early stage active MM, this not true for many posts on this forum. I am on first cycle of VRd. After several cycles I may be in a good position to go for a transplant. Probably, not Thailand, but I will visit the MM expert in Bangkok, and ask her for suggestions what I should do / where I should go.
Budget is an issue, to some extent. I could return to UK (in say October) and spend an estimated GBP150. If I could get an assurance that I would be free of MM for say 5 Years – then I may take up that option. But, I will not get such assurance (if at all) – until I am tested in the UK.
There is a patients forum that deals with MM in India, not so much ‘on the mark’ as is this UK forum, but there are obvious possibilities there in India, I think that someone posting there had a successful transplant in Manila (where he worked). So, there are other overseas options.
As for India, it is much closer to Thailand and will be cheaper (GBP 50k?). I have worked in India; I know there are extremes of good and bad. Same time, I do know that some of their qualified staff are extremely competent and well meaning.
My question to the forum today – do you have a link or information on the success rate (number of ‘MM free’ years) – listed by age, MM staging at commencement, and in particular the negative effect of high risk genetics, or similar.
Is there any comparative data that demonstrates a marked success in terms of overall life expectancy – with and without transplant? Do the impressive results derive from those with low risk genetics, and presumably early stage disease?
BTW, as my VRd treatment (4 to 6 cycles) in Thailand nears completion, I will send my test results to The Royal Marsden Hospital for comment and proposal. All options on the table.
John
I recall a medial research paper that attempts to answer your question so it exists. The data as I recall was frustratingly difficult to interpret and life expectancy just looked so much shorter than I believed in given the huge developments in Myelona treatment that the research paper didn’t take into account as ( of course ) it can only interpret historical data. Myeloma is such an individual disease that generic data is so very hard to apply to our own circumstances.
You mention US attitudes to SCT are a bit different and you are right that there are more doctors there who don’t auto recommend SCT as I found in the UK ( there are other threads on this subject and smartpatients also cover this well )
Investing in a private consultation with Dr Kaiser as @mulberry suggested I agree with and ask them for a list of info they need
Be careful of efficacy of Indian drugs. I took Dr Reddy’s Lenalidomide for a while but there are fakes out there as well to be careful about
Your post reminded me of all the questions I was trying to get answers to so good luck and I previously mentioned HealthTree where I learnt a huge amount from .
rosary.
I have opened up and read (in part) some 30 or 40 documents online relating to MM.
The following document is amongst the best – loaded with information and relatively up to date (2020):
“Multiple myeloma: 2020 update on diagnosis, risk-stratification and management”
https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.25791
With regard to this forum thread on treatment, and the some of the questions I raised, I note the following points (with my brief comments in italics):
From Section 2 – “the M protein level is monitored by serum protein electrophoresis (SPEP) and serum FLC assay to assess treatment response every month while on therapy, and every 3-4 months when off-therapy.”
Two monitoring tests available…
From Table 3 – The role of genetics – standard risk, OS is 7 to 10 years. High risk, OS is 5 years.
Any two high-risk factors (Double-hit) further reduces OS, etc…
From Table 5 – Percentage of newly diagnosed patients with the (genetic) abnormality:
Standard risk 75%
High risk 25%
Some good news – 75% of patients are standard risk…
From 5.3.1 – Autologous stem cell transplantation (ASCT)
“ASCT improves median OS in multiple myeloma by approximately 12 months.”
Not so good news and probably a controversially short time period (only 12 months)…
From 5.3.1 – “The US trial more likely reflects the impact of tandem ASCT in the context of modern therapy when most new options for salvage are available. Thus routine tandem ASCT is not recommended outside of a clinical trial setting.”
Reflects different attitude to ASCT in USA (due to newer treatment options there)…
From 6.12 – Emerging options – mentions CAR-T.
Extremely expensive and success not guaranteed…
CLARIFICATION
The following comment (from above) may give the wrong impression:
“ASCT improves median OS in multiple myeloma by approximately 12 months.”
Like not much to be gained by undergoing ASCT…
There is a distinction between median Overall Survival (OS), and median Progression-Free Survival (PFS). These terms refer to quite different time periods in the course of the disease.
e.g. Overall Survival improvement may be only “12 months”, but Progression-Free Survival can be 43.4 months – for a given patient with the disease – see following reference (as numerical example to make the point):
“A previous study by Gay and colleagues reported a median PFS of 43.4 months with 4 cycles of lenalidomide and dexamethasone, followed by ASCT and lenalidomide maintenance therapy until disease progression or unacceptable toxicity, for comparison with new drugs (Gay F, et al. Lancet Oncol. 2015;16:1617-1629).”
I have just started my 2nd cycle of VRD here at the local public hospital in provincial Thailand. The ‘V’ was not included in 1st cycle as I had some on-going dental work. The plan is for 4 cycles total followed by maintenance.
Although the main entrance to the hospital resembles an overcrowded railway station, the nursing staff and my doctor, once inside the various treatment rooms, cannot be faulted. The costs are quite low. Yesterday, the drug infusion (‘V’) and my medication for 4 weeks, including some basic blood tests and doctor fee, came to about GBP120. Also, I received a report with detailed test results and doctor’s opinion. Obviously, this does not include the lenalidomide that I sourced from India. The local public hospital price was about 600% higher than the ex-India price (and the ex-India was definitely not cheap).
I raised the question of SCT and was informed that the cut-off in Thailand is 65 years. I am 76 years old; I will put that thought off until nearing completion of present treatment.
The prescribed medication leads to my question today about ‘medication and food’ interactions.
My doctor has limited English and I always have other questions. I have checked the internet but this particular question can be quite laborious to answer (e.g. citrus fruits and/or discussion of enzyme issues).
I am prescribed Lenalidomide, Dexamethasone, Acyclovir, Omeprazole (daily), and Bactrim.
I was surprised to see that Lenalidomide has a very short half-life of 3 to 5 hours, this may help my ‘when and what to eat’ issue.
At breakfast here, I have a wide choice of fresh pineapple, papaya, mango, pomelo, bananas, etc.
Of course, breakfast time is when most meds are taken.
My feeling is that I have to cancel the fruits (with ‘enzymes’) until much later in the day?
This may seem a trivial question regarding the fruits but so many delicious and healthy fruits are available here – ready cut and available year round – they form up to half of my local diet and can be eaten at any time of the day. I would hate to think that effectiveness of the meds was severally reduced because I ate a large portion of pineapple.
BTW, my doctor recommended Lenalidomide after breakfast, I think I will take before breakfast (apparently OK) for more absorption and to be less affected by citrus fruits.
One final comment, I’m suffering negligible side effects (even none?) from the medication, with the exception of the steroid (only 20 mg, a half dose here at 76 years and above) – I would describe it as being ‘hyped-up’ for the day.
My doctor thoughtfully prescribed a bedtime Ativan.
BUT … just noticed a red flush on my face and throat, this is some 36 hours after Zoledronate infusion (my first infusion) – I believe an (minor) allergic reaction that some encounter.
Hi John
That sounds like a lovely breakfast menu! The patient information leaflets for Velcade and Lenalidomide don’t seem to contain any diet restrictions, though the MUK Velcade treatment guide does advise not having green tea Bortezomib MUK.
You might find this CRUK webpage useful Food and drink to avoid during cancer treatment. Other fruits I’ve had proscribed at different times in the past (but I can’t remember what I was having in the way of treatment at the time) are cranberries, pomegranates, lychees and star fruit.
It seems that there should still be plenty to choose from in the morning!
All best
Tim
Tim,
Thanks for the link.
I have extracted the following information:
“…There are many CYP enzymes. We know that certain ones affect how cancer drugs are broken down in the body.
The amount of these enzymes in the body can affect how well the cancer drug is broken down. This affects how well the drug works and the possible side effects.
Foods that affect CYP enzymes:
The best known foods that affect the CYP enzymes are grapefruit and Seville oranges. This includes their juice and other products that are mostly made from these, for example marmalade.”
I have since found an article that specifically discussed Thai fruits:
“…The effects of six Thai fruits, namely banana, guava, mangosteen, pineapple, ripe mango and ripe papaya, on cytochrome P450 (P450) activities were investigated. The median inhibitory concentrations (IC(50) ) of each of the fruit juices on CYP1A1, CYP1A2, CYP2E1 and CYP3A11 activities were determined. Pineapple juice showed the strongest inhibitory effect against all the evaluated P450 isozyme activities in mouse hepatic microsomes, followed by mangosteen, guava, ripe mango, ripe papaya and banana.”
My conclusion is to delete pineapple completely, and limit my intake of papaya and bananas.
Your link warned of oranges and grapefruit.
My link warns about pineapple and pomelo (elsewhere).
Obviously, these are all ‘tart’ and the most acidic in taste and nature, and are to be avoided.
I believe the reason for taking Omeprazole (daily before breakfast) is to reduce stomach acid for higher drug absorption. This does not appear to include any reduction of CYP enzymes.
Many thanks for the link and your comments.
John
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