Hello Twitchy

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]

Hello Twitchy

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]

Hi Ted

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]

Hi Angela

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]

Hi magicmoments (lovely username by the way)

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]

Hi everyone

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]

This Royal Surrey flow chart may help:

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]

Hi Dawn, Peter and Andrea

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]

Hi Dawn, Peter and Andrea

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]

Hi All

> 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]

Hi Everyone

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]

Hi Peter, Dawn and Andrea

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]

Hi Andrea

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]

Hi Peter, Andrea and Dawn

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]

Hi Peter, Andrea and Dawn

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]

Hi Peter, Andrea and Dawn

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]

Hi Peter, Andrea and Dawn

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]

Hi Matt

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

Hi Matt

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

Hi Matt

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