[HeathParticipant]

Dear Gill,
Thank you for your kind posting.

[brochoParticipant]

Hi Heath I had not heard of PCL thankyou for letting us know Your wife must have been a very determined lady and I am so sorry she is no longer with you.All the best for the future love Bridget x

[HeathParticipant]

Thank you, you are kind.I am not an expert,but I made sure both Sue and I
understood what was happening,why etc. We had brilliant medical teams who
always explained what was what.

[HeathParticipant]

Hi Ellen,

Do you think you could add Plasma Cell Leukaemia to the list of related conditions? It is a very rare distant relative of MM and my wife suffered it for over 8 years (some sort of record).Treatment is the same as for MM
in the absence of deep research into the condition. I am happy to share my
knowledge of this "orphan". Heath

[ellenModerator]

Thank you Heath. This is something that I have come across a few times since joining Myeloma UK and have spoken to one or two patients and carers either on the Myeloma Infoline or by email.

I have checked with my colleagues here at Myeloma UK and wanted to let you know that an Infosheet on Plasma Cell Leukaemia will be available in the near future. I have also added it to the list above.

Ellen

[OutdoorsPaulParticipant]

Hi Ellen
I have just been diagnosed with Lightchains Myeloma and I am 50% through my first cycle on Myeloma 11 trial RCD pathway.Is there any info out there on Lightchains,my consultant says its in the "early stage" I am 39 and male quite physically fit..except for the Myeloma!
thanks Paul

[ellenModerator]

Hello Paul

I am sorry to hear that you have been diagnosed with light chain myeloma. I hope that the following clarifies things for you.

Normally, plasma cells in the bone marrow produce an enormous variety of antibodies, or immunoglobulins as they are sometimes called, to help fight infection. These are made up of two heavy chains, identified by the letters G, A, D, E or M and two light chains called Kappa (k) and Lambda (?). Each individual immunoglobulin (Ig for short), can only have one of the five possible types of heavy chain, and one of the two possible light chain types.

In myeloma, abnormal plasma cells release only one type of antibody (immunoglobulin) known as paraprotein which has no useful function. In most people with myeloma these abnormal antibodies are made of both light and heavy chains. However in about 20% of patients, the myeloma cells produce light chains only (no heavy chains at all). This is called ?light chain? or ?Bence Jones? myeloma.

We have an Infoguide on the test which measures free light chains in the blood. I can post it out to you or you can find it on the website at http://www.myeloma.org.uk/information/myeloma-uk-publications-list/

I moderate the discussion forum but try not to intervene too much. If you have any questions you would like me to answer then please contact me or my colleague, Maggie, by phone on the freephone Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk

Ellen

[konrad01Participant]

I've been reading up on treatments and diagnosis over the break and it seems to me that there are multiple drug therapies that work with older people. See, for example, http://bloodjournal.hematologylibrary.org/content/117/11/3025.full.pdf

I find it frustrating that there seems to be little alternative to "watch and wait" – am I missing something

John

[ellenModerator]

Having smouldering myeloma can be a cause of much uncertainty and anxiety, and I absolutely take on board your frustration that at present treatment is not recommended. The reason for this is that there is not enough evidence to suggest that the benefits of treatment at this stage outweigh the risk of side-effects. However, this is still an area of active research and the latest reports suggest that treatment may help in delaying the progression to active myeloma in ?high-risk? smouldering myeloma patients. See http://www.medpagetoday.com/MeetingCoverage/ASHHematology/30258

On a general note, there are a number of less intensive treatment options for older patients with active (symptomatic) myeloma that are available. Decisions about treatment are very individual and depend on factors such as the patient?s general health, their age, personal wishes, the nature of their myeloma and level of any complications caused by it. Although treatments for older patients are less intensive (usually combinations given at lower doses) they remain effective against the myeloma and are better tolerated as they have fewer associated side-effects.

[duncanParticipant]

Hi everyone,i hope i'm posting in the correct place, apologies if not and a point in the right direction would be appreciated .
Until About 6 weeks ago i considered myself ( no athlete) but quite a fit guy, walked the dog for 2 hrs a day, hard core sub aqua diver, and a very busy job and life, and then on morning of my 49th birthday suddenly felt really unwell, so exhausted that i couldn't physically get out of bed and when managed to collapsed onto the floor and couldn't get my breath. later that day friend, how i don't know, got me to my local A and E department. After a rigid broncosopy and biopsy's and an MRI , i was told i had pneumonia and Amyloidiosis in my tracheal and bronchial tree causing thickening and blocking my airway. I've had a couple of laser treatments removing deposits to keep my airway open, but it hasn't lasted long before symptoms have returned and am having it done again on weds. I've been referred to National Amyloidosis Centre at the Royal Free Hospital in London and im waiting for an appointment. i was wondering if there is anyone else out there going through or gone through broncial and tracheal thickening or Amyloidiosis who could give me some do's and don't tips . i cannot believe how quickly this has happened !. i've been started on dexamethasone which seems to have made me feel a lot better apart from making me really emotional and tearful, which i get really embarrassed about and codine and paracetamol and oramorph for throat pain. Duncan

[duncanParticipant]

Hi everyone,i hope i'm posting in the correct place, apologies if not and a point in the right direction would be appreciated .
Until About 6 weeks ago i considered myself ( no athlete) but quite a fit guy, walked the dog for 2 hrs a day, hard core sub aqua diver, and a very busy job and life, and then on morning of my 49th birthday suddenly felt really unwell, so exhausted that i couldn't physically get out of bed and when managed to collapsed onto the floor and couldn't get my breath. later that day friend, how i don't know, got me to my local A and E department. After a rigid broncosopy and biopsy's and an MRI , i was told i had pneumonia and Amyloidiosis in my tracheal and bronchial tree causing thickening and blocking my airway. I've had a couple of laser treatments removing deposits to keep my airway open, but it hasn't lasted long before symptoms have returned and am having it done again on weds. I've been referred to National Amyloidosis Centre at the Royal Free Hospital in London and im waiting for an appointment. i was wondering if there is anyone else out there going through or gone through broncial and tracheal thickening or Amyloidiosis who could give me some do's and don't tips . i cannot believe how quickly this has happened !. i've been started on dexamethasone which seems to have made me feel a lot better apart from making me really emotional and tearful, which i get really embarrassed about and codine and paracetamol and oramorph for throat pain. Duncan

[eveParticipant]

Hi Duncan, Yes you are in the right place, if you ring Ellen she will be able to tell you about it plus send you booklets. There are a few people on here with Amyloids so I am sure they will reply when they see your post. I believe there are only about 600 cases a year and Royal Free is the only hospital that seals with it.my

Husbands friend has this condition and the treatment is the same for Myeloma.

What I did find interesting is the fact you are a diver,my husband has Myeloma and was also a professional diver at one time,although they say no link.

Welcome,sorry if there are any mistakes as on I pad in Kings at the moment with hubby,he is having SCT.Eve

[duncanParticipant]

Hi Eve,

Thanks for making contact, my partners just got a new ipad, really impressed with it finds it much better than having to carry a laptop round. excuse my ignorance you mention your at kings not sure what a SCT is but will have a look in a minute,but wanted to say hi first. I've had some good news, was phoned today have got a 2 day appointment at the Royal Free for ECG echo cardio gram, and full body scan next week. so hopefully will get some answers re: treatment, its playing on my mind how many laser treatments i have got left before they put a stent into my throat apparently its not pleasant thing to have it would be good to try to stop the deposits building up as quickly as possible before they laser to much away if that's an option.

I was in the royal navy in my former career that's where i got the diving bug, by doing a ships divers course, never really professionally dived i'm more a very keen amateur, but have done a few technical courses since leaving and like deep wrecks and longer bottom times, so perhaps there is a link not sure what your hubby dived on ? my holidays have been tailored around the dives. i had just booked myself to do a re breather course at Bovisand Plymouth over the summer but never mind i'm sure i will find another hobby !

I see from your profile picture your a dog lover. me to i've attached a pic of my baby he's a 4 year old rotty,

Thanks for the advice re ringing Ellen i will try to ring her tomorrow morning and have a chat and see if she can send me some booklets.

I've just looked up SCT, hope all goes well with it for your Hubby, is it his first one ? I wish him the best, again i hear its a painful thing to have done.

Not sure which part of the country your from i'm in Torquay Devon

Thanks Again for getting back,

would be nice to hear how you get on with SCT if you get chance, and if you don't mind wont bombard you but will stay in touch.

Duncan

[eveParticipant]

Hi Duncan
Sorry for not replying.

You have a lovely dog,it will be a great help to you in your recovery,as you have to take the dog for a walk and this helps.

We are based in Deal Kent,but Slim knows Bovi Sands well based in Torpoint, in 40 and 42 commando units once upon a time
I have some problems not connected with myeloma,so will be absent for awhile please do not think I am ignoring you.Eve

[duncanParticipant]

Hi eve,
Its such a small world i was attached to 29 cdo and cdo log regt spent my last months in Belize with , before leaving the navy nice way to leave.

Sorry its taken so long to get back to you, came into derriford Hospital last Wednesday, to have a routine i thought throat laser, to remove some of these deposits, which build up, ok for me, had a good sleep, but has given my partner and loved ones a worrying few days, unfortunately while they were lazering i arrested in the operating theatre and bled quite a bit ended up having a forced sleep on ICU, ventilated for a few days.

BUT i'm still going strong and more importantly the big two days are coming up, got scan at the Royal Free on Wednesday travelling up by ambulance in the morning .
next time im there will take a pic and post it for Slim its a private dive centre chambers have long gone

http://www.discoverydivers.org/

[Author]

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