Andrew,
I am living in Thailand and raised similar questions to yourself some months ago on this forum.
I has some very useful responses, you should be able to search and find them within the forum.
One suggestion was to contact Royal Marsden Hospital. I did and they responded asking me to send my medical results. I have put this on hold as I am currently on treatment (Lenalidomide and Dexamethasone) here in Thailand and I am waiting for test my results after 5 cycles. It is good to know that I have that UK option.
One year ago, I had Smouldering Myeloma. Now I have Stage One Myeloma due to slight increase in one or two blood parameters. I have no symptoms other than mild fatigue but I do have high risk genetics.
It seems that if you are classed as having high risk genetics, then early treatment is recommended as in my case. Note the comment from Bear above.
If I were you, I would consider having a bone marrow biopsy in Hong Kong. This will provide a sample that can be subjected to genetic testing. I hope that you have low risk genetics and possibly no immediate intervention is required other than regular monitoring of any changes in blood parameters.
John
I have jumped about quite a bit in the above post such that one clarification is necessary.
This intervention with early treatment of my Smouldering Myeloma has been prompted by my situation being considered “high risk”, based on my “high risk genetics”.
My mild anaemia (low HB at 10.7, but still above the lower limit of 10.0 for active myeloma) was also getting progressively lower with time.
I have noticed the loss of energy – mild fatigue and mildly short of breathe.
These two points combination above, indicated that I could be expected to advance to Active Myeloma – within a very few years, or even less.
To summarise, my understanding is that early treatment intervention for those with smouldering myeloma is for those considered as high risk cases only.
I note you asked the following question:
“Does he still have cancer or not as from what I have read, asymptomatic Myeloma is not cancer yet?”
I thought about how to answer this – I googled it – the best answer is actually on the Myeloma UK website:
Smouldering myeloma – Myeloma UK
This reminds me of something similar, not having lived in the UK for many, many years, I find the best first summary of various medical conditions are to be found on the medical advisory leaflets as put out by the NHS.
As for your husband, I assume no lesions were found from the MRI (BTW as in my case).
I would still push your doctor or his staff, to confirm that a FISH test was performed after bone marrow biopsy and only low risk genetics were found.
I believe that would be good news and give a good prognosis for your husband – IMHO…
At diagnosis in January 2021, my myeloma cells from bone marrow extract were estimated at 23%. Same time, I was classified as having type IgA paraprotein at a level of 28 g/L.
With no other myeloma ‘features’ other than the feeling of fatigue with low haemoglobin (Hb = 12), and all my blood parameters being normal or just under borderline values, no treatment was contemplated.
Jumping ahead to living in Thailand one year later (April 2022), my bone marrow myeloma cells had increased from 23% to 29%, and again with no other myeloma ‘features’ other than the feeling of fatigue my haemoglobin had dropped from Hb = 12, to Hb 10.7 (should be 13 or above).
Your husband’s condition has similarities with mine – with his 20% to 30% myeloma cells and no real physical symptoms. Not sure why they gave you such abroad range of 20% to 30%, though I read that these values vary depending on which ‘blob’ they count. You do not mention the fatigue or breathlessness that I have noted – not severe fatigue but to a small noticeable extent. You mention leg pain. I also have leg pain, mostly knee pain but I have put this done to my age as possibly arthritis, and not myeloma. I have no problem walking, comes (sometimes only) when sitting or lying down – not sure why this is.
One other point, I have had two bone marrow procedures, in different countries. They threw up so much additional information (parameters) – not sure why you are not privileged to that – I guess that is NHS practise.
My Thai doctor’s report classified me as having Smouldering Myeloma, and then Class 1 according to ISS staging. He recommended early VRD treatment that is the Velcade, Lenalidomide and Dexamethasone. This seems to be the most common first line treatment and consist of several cycles of 28 days. Velcade infusion once every 28 days, Lenalidomide tablets for 21 days, and Dexamethasone (steroid) for one day only.
I have just undergone 3 cycles with some side effects – mild fatigue and some constipation – but I try to ignore it. My main issue has been cost of the Lenalidomide tablets that I now buy from India at a much cheaper price.
My doctor plans on doing more detailed blood tests after 4 cycles, so I am unable to clearly state the degree of success. However, my Hb has increased from 10.7 to 11.1, and my Globulin has dropped from 4.5 to 2.7 (now low within normal range, and related to how much myeloma paraprotein is in the blood). All other standard blood test results are normal or near normal.
My doctor is very pleased with these interim results and is contemplating further cycles and a maintenance regime. There is a language barrier and I’m not sure what he plans next, or if I even agree to it.
There is a school of thought that recommends early treatment – such as mine. I have seen one doctor in Singapore, and three doctors (different hospitals) in Thailand – all pushed for early treatment. Of course, they have a financial incentive wanting to put you on expensive drug treatments with associated expensive testing regimes.
There is quite a bit of literature on the internet advocating early treatment, maybe not so much in the UK.
I think the intent of all treatment is to become ‘disease free for longer’, to what extent it extends life depends on your age, health, genetics and comorbidities. However, myeloma is a complex disease and I’m not qualified to make broad concluding statements. There are some quite optimistic outcomes on this Forum – that is good news, however that could well be down to good genetics and good health? My own experience has led me to think that genetics are an important consideration and I would be pushing your doctor for an assessment on that point. Your husband has the possibility of low risk, standard or high risk genetics. I am high risk with 1q gain genetics. Very re-assuring if low risk, but bit worrying if high risk.
BTW, I am 76 years old and my doctor said a few days ago that he would follow with SCT (Stem Cell Transplant) but cannot do as an age limit of 65 years exists in Thailand. So, I will have to give thought to what are my next steps are on completion of my several VRD cycles.
I recommend Googling VRD and SCT as these options may pop up, sooner or later, as your husband makes his journey with myeloma.
; my case seems to be moving ‘faster’- probably my high risk genetics.
Could be that your husband’s doctor considers his case relatively stable and has not deemed further information necessary. This is maybe where your husband’s case and mine differ?
In the USA, the SCT solution seems to declining with so many new ‘powerful’ (but expensive) drugs in the market. I will probably monitor my condition every few months via testing of blood, and ultimately switch to an alternative drug regime, hopefully one that exists generically in India in tablet form at an affordable cost.
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
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.
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 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…
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.
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 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
