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Hi Andrew,
Generally, patients with smouldering myeloma are monitored via regular blood tests until the disease progresses to an active state in which case treatment would then commence (which seems to be the path your consultant is following). In the meantime be aware of any changes in your state of health and report them and any concerns to your medical team. I’m not aware of how the system works in HK I’m afraid but from your post it seems it is a similar approach in terms of monitoring but always worth asking about possible treatments to try and slow development of active state, though these will likely come with side effects.
Sorry I can’t be of more help and hope that the myeloma remains in the smouldering state for a long time to come! xx
Had a call from the Stem Cell Team to arrange a video call to discuss the process so that is set up for next Wednesday.
All moving along nicely.
Lottie
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
Hi John,
Thanks for your note.
I would like to do the genetic testing.
Please could you provide me with the contact details of the Royal Marsden Hospital.
Thanks
Andrew
I am seeking a 2nd opinion from a very experienced Hematologist in the UK.
I can send all my blood tests electronically.
Can anyone recommend a suitable doctor?
Thanks
Hi Andrew,
Dr Martin Kaiser at the Royal Marsden sees patients privately. He is one of the top Myeloma specialists in the UK & is at the forefront of myeloma research. You can find his contact details online. ( There are other good UK myeloma doctors who offer private consultations.)
It may be useful to you to read a blog called ‘Margarets Corner’ online & on Facebook. Margaret is an American living in Italy who was diagnosed with Smoldering Myeloma 19 years ago, and who is still smoldering, so has not yet required conventional treatment. She uses supplements, in particular curcumin. This does not have such a dramatic effect on all patients, but some others with SMM have found it helpful.
BTW You may get more responses if you start your own thread, which can be done by scrolling down the page at the top of the category heading.
Jane
Dear Lottie,
I hope you are feeling ok still and are coping with your treatment.
Having just undergone harvesting I thought I would get in touch to reassure you about the procedure.
The filigrastim injections haven’t given me any side effects and due to a well established roll of fat around my stomach easy to self administer. I didn’t find them painful.
In my case the hope was to collect enough stem cells for 3 transplants, 2 planned and one for when I relapse, so I was booked into the hospital for 3 nights as it was an early start on the first day. Day 1 started with early blood tests and additional dose of Filigrastim which I had been taking for the previous 4 days. I then went to X-ray for the insertion of the femoral line. The paperwork took longer than the procedure and with the local anaesthetic it wasn’t at all painful. Harvesting began at about 10.30 and I was rigged up to the machine until 2.15. There is no escaping the machine so when necessary a commode was brought to me. I found wearing shorts made access to the femoral line easier and easier going to the loo. I was grateful for a good book and other things to keep me occupied. At 2.30 the days collection was whisked off to the local lab for a count and to be frozen. Unfortunately my stem cell count was only 0.7m when each transplant needs 2.5m cells so I was given another injection, Plerixafor to boost collection. This was given quite late at night and I was warned it could lead to a quick dash to the toilet in the early hours of the morning, but I was fine.
Day 2 of harvesting went smoothly and most of the time was taken up with the SCT nurse telling me how the transplant it’s self would work. 2.89m stem cells collected so that made me feel more positive.
Day 3 , the machine started playing up mid morning, it started when I had to go to the loo, but I was assured that must have been coincidental! Harvesting stopped at 12.30 so I was a little concerned that there wouldn’t be enough stem cells for 2 transplants let alone the third. I went back to the ward to have the femoral line removed feelings a little deflated. Results from the lab came through quite quickly and I have enough cells for two transplants.
During the whole process my femoral line had leaked a little ( the advice from the nurse was never wear your good underwear to hospital) and after being discharged it leaked rather alot and with a spike in my temperature I was re admitted for another night just in case. Perhaps I shouldn’t have watched something on the tv that made me laugh or walked down the stairs when leaving the ward. However I was very glad that the leak happened when I was still in the hospital not on the journey home.
Hospital stays are never restful and next time I will pack earplugs. My stomach area is pretty bruised and I have felt quite tired during the week following harvesting. In theory I should now be given a proposed date for the transplant but as that is not forthcoming I am about to start 2 more cycles of chemo. These will be instead of receiving them after the transplants not additional ones, for which I’m relieved.
Judy
Dear Judy,
Many thanks for all the information on the harvesting that was very kind of you to do that. So glad to hear that you had enough stem cells for two transplants.
I am doing good. I have an appointment next Monday for a medical and provisionally booked for harvesting on the 27th September which could of course change depending on the medical.
I am on Cycle 4 now and have been suffering intermittently with a burning sensation in my feet and tingling sensation in my hands so the Thalidomide has been stopped for the time being and the Velcade was stopped on the second week off Cycle 4 to see how things settle.
I have my monthly consultants appointment in two weeks time so will see what happens with regards the treatment. My consultant says I have had an excellent response to the treatment as my light chains are normal and my proteins are 2.6 so she is not unduly concerned with stopping the treatment for the moment so see if the nerve ends recover.
I will have Dara tomorrow and that will be Cycle 4 finished.
I had a call with the Stem Cell Consultant two weeks ago who went through the full process. I will have the harvesting done at the Cancer Centre and the transplant at the hospital if everything goes to plan.
I have been feeling ok. I have been really busy the last few months so I haven’t had much time to think about things.
Thank you again for all the information that is most helpful.
I am hoping I will get more information next Monday and maybe a timescale.
Best regards
Lottie
Hi everyone,
I just joined this forum. I will be 70 in six days and was diagnosed with MM during a routine medical. My Hb was 10 and the doctor was not happy with that because I am a man. He would have accepted it for a woman. After looking deeper he found the gamma globulin level was high and referred me to a hematologist who diagnosed me with 80-90% kappa free light chains. in short I have MM. I have been on chemo since December 2020. I find that between day 8 to day eleven of the cycle I feel weak. Other than that I try to go about life as normal and lock away the thought of MM somewhere in my head. I take each day as it comes and that has helped me mentally. However physically I am becoming weaker an weaker. Is this normal with this treatment?. thanks
Without knowing what treatment you are on, it is not possible to say precisely, but any treatment will have some impact on you, fatigue is a common denominator.
Hi everyone,
Hope you are all well.
I had my assessment at the Stem Cell Harvest Unit yesterday and all went well. I am booked to have my harvesting on the 27th September. My injections will commence four days prior to that.
I do not have a date for the SCT as yet but things are moving forward.
Started my bone strengthener a few weeks ago and now on calcium tablets.
I have had Velcade paused as I am having burning pain and numbness in my feet. My consultant will review next Monday. She is extremely happy with my response to the treatment, para proteins down from 30 to 2.6. My light chains are normal.
So far so good and hope the response continues.
Best regards
Linda
Hi Linda, that’s very encouraging news. I also had the burning pains in my feet but now I’ve had my transplant the pains have gone. Hope all goes well with your transplant and if I can answer any of your questions I will try my best.
Best wishes, Stewart.
Hi Linda
I had my velcade dose reduced twice during induction as I was experiencing ongoing numbness in my toes. Complete feeling returned, and my feet have been fine since I stopped taking velcade at the end of induction.
Hope it’s the same for you.
Good luck with harvesting- painless luckily!
Jane
Hi Stewart,
Thank you for your response, that is great news that the burning pains in your feet went after your SCT. Hopefully mine will do the same. It is a very strange feeling.
Best regards
Lottie
Hi Jane,
Thank you for your response.
It is a very strange sensation in your feet. I had the numbness in the toes and the burning sensation in my feet it is not a nice feeling at all.
I had this intermittently maybe for a day or so and then all of a sudden it was more intense, my Clinical Nurse said this sometimes happens.
My consultant is convinced it is the Velcade as this is common with Velcade will hear on Monday, she was thinking of just continuing with Dara as I had such an excellent response to the treatment.
Great news that your feet have returned to normal – hopefully mine will do so too.
Thank you for your good wishes, I can’t believe the harvesting is two weeks away, all happening now very quickly.
Best wishes
Lottie
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