I also had a SCT that didn’t work. That was in Sept 2014. My pp was 18 g/L 6 weeks before the SCT, and 24 g/L 9 weeks after. It rose steadily to 34 g/L in April 2015 with no treatment. I was then put on Rev/Dex (25mg/20mg), which halted the increasing pp. The Revlimid dose was reduced to 15mg after two cycles because of blood counts…[Read more]

Monoclonal Gammopathy of Undetermined Significance (MGUS) Infosheet

Or

https://www.myeloma.org.uk/wp-content/uploads/2014/05/Myeloma-UK-MGUS-Infosheet.pdf

(I’ve given 2 links in case one of them…[Read more]

NICE try to balance cost against benefit but I’m not convinced they’ve got it right in the case of pomalidomide. It is very expensive but there seem to be plenty of examples of people being treated…[Read more]

This is the LimbO UK website:
https://limboproducts.co.uk/

You can see a photo of the Limbo M75…[Read more]

I don’t believe it, to coin a phrase. I think it was because I was still in visual mode.

Try again in text mode…

I don’t believe it, to coin a phrase. I think it was because I was still in visual mode.

Try again in text mode…

What a mess. I tried to include a photo of the M75 and it seemed to work but it created a mess when I submitted it. I’ve deleted most of it, loads of code like the little bit I’ve left above.

Try again, without the photo…

What a mess. I tried to include a photo of the M75 and it seemed to work but it created a mess when I submitted it.

Try again, without the photo.

It wasn’t very recent but I had my SCT at Barts two years ago. I was admitted to Bodley Scott ward, which was in the East Wing then, but it has since been moved into the extensively redeveloped KGV building. The staff were excellent, the food wasn’t brilliant but I managed to eat it. The main difficulty was boredom and counting the…[Read more]

I had my stem cell transplant in September 2014. Like Richard, mine didn’t work, my pp was higher afterwards and kept on rising until I was put on Lenalidomide (Revlimid).

I posted a long description of my experience when it was still fresh in my memory. I’m not sure if you can create a link to a single post on here, but this this…[Read more]

I had my stem cell transplant in September 2014. Like Richard, mine didn’t work, my pp was higher afterwards and kept on rising until I was put on Lenalidomide (Revlimid).

I posted a long description of my experience when it was still fresh in my memory. I’m not sure if you can create a link to a single post on here, but this this…[Read more]

I had my stem cell transplant in September 2014. Like Richard, mine didn’t work, my pp was higher afterwards and kept on rising until I was put on Lenalidomide (Revlimid).

I posted a long description of my experience when it was still fresh in my memory. I’m not sure if you can create a link to a single post on here, but this this…[Read more]

My reply just got wiped by Safari reloading the web page. Sigh. Briefly, many people with myeloma have Bence Jones protein in their urine, but a lack of it does not indicate you have not got myeloma. The test can be done on a small sample, which you can provide straight away at your GP’s surgery or at the hospital, or on a 24 hour…[Read more]

My reply just got wiped by Safari reloading the web page. Sigh. Briefly, many people with myeloma have Bence Jones protein in their urine, but a lack of it does not indicate you have not got myeloma. The test can be done on a small sample, which you can provide straight away at your GP’s surgery or at the hospital, or on a 24 hour…[Read more]

Are you sure your doctor said haemoglobin injections?

Haemoglobin is in your red blood cells, it carries oxygen from your lungs to the rest of your body. Low haemoglobin is anaemia, which can make you feel tired or breathless. If you have anaemia that needs treating you will probably be given a blood transfusion in the first instance, and…[Read more]

High ESR can be caused by a number of conditions. The test is cheap and non-specific, i.e. it doesn’t indicate a particular condition. If your GP rules out more likely or obvious conditions she might suspect Myeloma in which case she will refer you to the haematology / oncology department at a hospital for more tests, including those…[Read more]

I’m sorry to hear about your husband’s diagnosis and spine problems.

There’s lots of information about myeloma in Myeloma UK’s publications

Myeloma UK Publications list

It might be best to cross the cytogenetics bridge if/when you get to it. But if you want to…[Read more]

Dawn, that’s great news, I’m very pleased for you. I wish you a long remission. I sometimes wonder if you have to suffer pain during the SCT to have a good remission, as in your case, whereas if you have a relatively easy SCT it doesn’t work as well. But I could be wrong. I’m just about to start my 10th cycle of Revlimid + Dex, it’s…[Read more]

http://www.royalsurrey.nhs.uk/Myeloma_algorithm

Note that Pomalidomide will not be funded from 1st November. Lenalidomide (Revlimid) will not be funded for 2nd line treatment, but will continue to be funded for 3rd line treatment. In both cases existing treatment can continue.

You can see the September…[Read more]

Good luck Dawn, I hope your transplant goes smoothly. I’m sure you’ll cope well. You will have lots of infusions for the first couple of days or so, then for the next few days you’ll probably wonder what all the fuss is about. After that it’s a case of getting through each day, but each day is a day nearer to your…[Read more]

Good luck Andrea, I hope your transplant goes smoothly. I’m sure you’ll cope well. You will have lots of infusions for the first couple of days or so, then for the next few days you’ll probably wonder what all the fuss is about. After that it’s a case of getting through each day, but each day is a day nearer to your…[Read more]

> Dawn, it’s good to hear your pp has responded well to CTD. I’m not sure about the implications of high FLCs on their own, it’s not something I’ve explored. MM has so many variations. Sorry to hear about your continuing side effects. I recollect having painful thigh muscles for a while but I think it was when I was on Velcade + Dex, not…[Read more]

Peter, it’s good to hear from you and I’m pleased for you that your SCT went so smoothly. You beat me by 3 days, I was discharged on day 17 and I thought I did well.

I was 69 so I received the reduced high dose melphalan like you (i.e. MEL 140 instead of MEL 200). I think side effects like mucositis are less likely, or likely to be…[Read more]

That’s a great response Dawn. I should think it’s still got some way to go judging by the amount the pp has fallen in just 2 cycles. My pp only went down from 43 to 36 after my first 2 cycles of CTDa, but it was nominally 22 after 4 cycles, but within the space of a month four successive figures were 23, 28, 22, 25…[Read more]

I’m delighted that you’re doing so well and enjoying life back home. Long may it continue.

It sounds like your myeloma is somewhat similar to mine. I’m IgG Kappa like you, and I was 1q+ and t(11:14) at diagnosis. My 1q gain and your 13q deletion are both intermediate risk in the Mayo Clinic’s mSMART classification of relapsed MM. My…[Read more]

Peter, here’s hoping your pp continues on a downward trend. My consultant was quite keen to move on to SCT when my pp seemed to be plateauing after 4 cycles of Velcade (which I was switched to after the initial 4 and a bit cycles of CTDa) and didn’t continue with the Velcade to see if the pp might go down any…[Read more]

Peter, here’s hoping your pp continues on a downward trend. My consultant was quite keen to move on to SCT when my pp seemed to be plateauing after 4 cycles of Velcade (which I was switched to after the initial 4 and a bit cycles of CTDa) and didn’t continue with the Velcade to see if the pp might go down any…[Read more]

Peter, here’s hoping your pp continues on a downward trend. My consultant was quite keen to move on to SCT when my pp seemed to be plateauing after 4 cycles of Velcade (which I was switched to after the initial 4 and a bit cycles of CTDa) and didn’t continue with the Velcade to see if the pp might go down any…[Read more]

Peter, here’s hoping your pp continues on a downward trend. My consultant was quite keen to move on to SCT when my pp seemed to be plateauing after 4 cycles of Velcade (which I was switched to after the initial 4 and a bit cycles of CTDa) and didn’t continue to see if it might go down any further.

It’s interesting you…[Read more]

No, sorry, I’m being treated at Barts. I’ve seen the Royal Marsden mentioned quite a bit when I’ve been browsing the forum so I’m sure someone else can help. Sadly there doesn’t seem to be a way of searching the forum (Edit: yes there is, at the top of the forum – click on ‘Discussion Forum’).

Ian

No, sorry, I’m being treated at Barts. I’ve seen the Royal Marsden mentioned quite a bit when I’ve been browsing the forum so I’m sure someone else can help. Sadly there doesn’t seem to be a way of searching the forum (but I could be wrong).

Ian

Does this page answer your question?

http://www.royalmarsden.nhs.uk/consultants-teams-wards/clinical-units/pages/haemato-oncology-unit.aspx

It doesn’t indicate how up to date it is.

Ian

Being a person with myeloma rather than a myeloma patient is a good way of putting it. I think that’s how I tend to feel. Actually, I tend to forget I’ve got myeloma a lot of the time, though not for long periods inevitably if you’re still taking medication for it.

I’m sorry to hear the Velcade treatment is not having a dramatic effect,…[Read more]

Being a person with myeloma rather than a myeloma patient is a good way of putting it. I think that’s how I tend to feel. Actually, I tend to forget I’ve got myeloma a lot of the time, though not for long periods inevitably if you’re still taking medication for it.

I’m sorry to hear the Velcade treatment is not having a dramatic effect,…[Read more]

Being a person with myeloma rather than a myeloma patient is a good way of putting it. I think that’s how I tend to feel. Actually, I tend to forget I’ve got myeloma a lot of the time, though not for long periods inevitably if you’re taking medication for it.

I’m sorry to hear the Velcade treatment is not having a dramatic effect, but…[Read more]

I haven’t got MGUS, but the Myeloma UK infosheet about it, which can be downloaded here

http://www.myeloma.org.uk/information/myeloma-uk-publications-list/other-related-conditions/mgus-infosheet/

says, in the “How is MGUS managed?” section: “Paraprotein levels can rise and fall in MGUS – this is normal. However, any steady increase in…[Read more]

Thank you for the update. It’s brilliant that you’re in complete remission, you must be delighted. I hope you manage to conquer the occasional down days. I guess we all have moments when we’re a bit apprehensive about what the future might hold.

I’m at day 160. Sadly my paraprotein level was higher after the transplant than it was…[Read more]

Thank you for the update. It’s brilliant that you’re in complete remission, you must be delighted. I hope you manage to conquer the occasional down days. I guess we all have moments when we’re a bit apprehensive about what the future might hold.

I’m at day 160. Sadly my paraprotein level was higher after the transplant than it was…[Read more]

You might struggle to find someone else with PCL here, it is much rarer than myeloma, and myeloma is a rare cancer. I think you’re the first person to mention it in these forums. Myeloma UK have published an Infosheet about…[Read more]

I suspect the labs use different units (i.e. Canterbury results in mg/L and Kings results in mg/dL). 180 mg/dL is equivalent to 1800 mg/L.

> Peter
I said specialist care nurse in another thread. I’ve just checked and I should have said clinical nurse specialist. FLCs weren’t mentioned during my reviews except when I asked and then the response seemed a bit reluctant and brief. They seemed to concentrate on pp as a measure of progress. I’m sure you will have been…[Read more]

> Peter
I said specialist care nurse in another thread. I’ve just checked and I should have said clinical nurse specialist. FLCs weren’t mentioned during my reviews except when I asked and then the response seemed a bit reluctant and brief. They seemed to concentrate on pp as a measure of progress. I’m sure you will have been…[Read more]