[ellenModerator]

This is the page to share experiences and support each other if you are affected by myeloma-related conditions. These include:

Smouldering/asymptomatic myeloma, MGUS (Monoclonal Gammopathy of Unknown Significance), AL amyloidosis, Plasmacytoma, Waldenstrom?s macroglobulinaemia, Plasma Cell Leukaemia and POEMS syndrome

Ellen

[DaiCroParticipant]

[i]'Smouldering/asymptomatic myeloma, MGUS (Monoclonal Gammopathy of Unknown Significance), AL amyloidosis, Plasmacytoma, Waldenstrom?s macroglobulinaemia and POEMS syndrome.'[/i]

Hi Ellen,

I don't know if peripheral neuropathy is a related condition or a side-effect… it certainly feels llke a condition to me.:-) I honestly believe that my daily life would improve by about 80% without it.

Still, while that is all I have to worry about I will gladly bear it.:-/

Dai.

PS. I am not sure whether Poems syndrome is a condition or an invitation – but I hope that if its the latter we are not expected to make the list above rhyme.;-)

[ellenModerator]

Hello Dai

I am sorry to hear that you are experiencing Peripheral Neuropathy; unfortunately this is a fairly common side – effect of some treatments for myeloma. It can also (rarely) be caused by the myeloma itself. So I would say that strictly speaking it?s not really classed as a related condition.

Have you had a look at our Infosheet on peripheral neuropathy? It does contain some useful information and has some tips on what you can do to try and improve the situation. If you have any questions please don't hesitate to call me on the Myeloma Infoline on 0800 980 3332 I will do my best to answer them.

Oh and please don?t' worry there wont be a new condition on the guidelines for using the discussion forum saying that it all should rhyme. Although that would be interesting.

Kind regards

Ellen

[JillParticipant]

Hello Ellen,

I don't know if this is an area you can help me with, but thought I'd give it a go just in case it's of interest in any ongoing trials for pre-myeloma symptoms. (I came across your website purely by chance, as I am attending a Dragons' Health Hustings conference on Edinburgh tonight where Eric Low is presenting, and we were given background information on him.)

My husband has been attending hospital every 6 months for the last 5 years since being diagnosed with a very low neutrophil count. (He also had bone marrow taken.) He's been advised it's something which won't go away, and they're obviously monitoring him for signs of myelodysplasic syndrome. He's been told to watch out for signs of infections (he recently had a wee lung infection, treated with antibiotics), and he also gets ulcers on his tongue most of the time, amongst other things. Most recently he's been seen by the local doctor for continuing diarrhoea which has gone on since November – blood tests have come back "normal" (i.e. discounting the low neutrophils), and he's been referred for an endoscopy, which will be in about 3 months. I'm obviously a believer in self-management of long-term conditions (being a nurse student), but must admit we feel a bit frustrated that we don't know if any information is being sent to the consultant within the 6 month period between hospital visits. I'm not asking for a diagnosis obviously, but just wondered if there were any trials at all going on looking at pre-myleoma signs and symptoms?

(My husband knows I'm writing to you, so there's no problem about confidentiality!)
Kind regards,

Jill

[ellenModerator]

Hello Jill

I have spoken to Maggie here at Myeloma UK who is head of our research and clinical information services. She is not aware of any such trial in the UK. She also said there was unlikely to be any specific prospective trial of this sort but studies may be done retrospectively.

If your husbands? doctors have suggested that he may have Myelodysplastic syndrome then it might be an idea to contact Leukaemia and Lymphoma Research. Call their Clinical Information Officer on 020 7269 9060 or email him at clinicalinfo@beatbloodcancers.org

I hope this helps but if you do have any questions please do contact me directly on the freephone Myeloma Infoline on 0800 980 3332 or email me at askthenurse@myeloma.org.uk

Ellen

[clarabellParticipant]

Hi,

On here for the fist time, Dad was told he had AL amyloid 2 weeks ago and had bone marrow biopsy taken 6 weeks ago. Up until today we were told he did not have cancer. On meeting a consultant to start a course on tablet chemo today it was briefly mentioned about myeloma, we were told that we should know this from bone marrow biopsy, news to as as we had never had results, so you can imagine we came away very shocked and unable to take in the info given, hence i have been trying to read up on it via this website tonight. What confuses me is that a neighbour in our street has myeloma and receives treatment intravenously. There was a mention today that dad will most probably have stem cell transplant in 6 months.

Is Myeloma treated differently in patients with AL? Also we don't know what grade/stage of myeloma my dad has. Treatment has been held back for a week as my dad has a cold. I'm surprised it has taken 7 weeks for treatment to start but I am glad that we have a week to look into whether the treatment is correct for him.

We are very confused so any info would be great!

[ellenModerator]

Dear Clarabel

I am sorry for the delay in replying to you I had hoped that another person affected by AL amyloidosis would reply and share their experiences. 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 askthenusre@myeloma.org.uk I can also send you an Infopack on AL amyloidosis and one on myeloma.

AL amyloidosis is a related condition to myeloma which arises from plasma cells just as myeloma does, but it causes different symptoms and complications. It is treated in the same way as myeloma i.e. usually a combination of chemotherapy, steroids and the drugs thalidomide, Velcade and Revlimid. A Stem Cell Transplant is another treatment option and would certainly be discussed with patients who are suitable for this procedure. These treatments are equally effective for patients who are diagnosed with both AL amyloidosis and myeloma.

Anyone diagnosed with AL amyloidosis should be seen at the National Amyloidosis Centre at the Royal Free Hospital in London. This is a centre of excellence for all types of amyloidosis and your father?s haematologist should be able to arrange this for him.

Kind regards

Ellen

[mandyParticipant]

Ellen
I wonder if you can offer any thoughts as to whether there may be a link between the various related conditions and MM. My 72 yr old Dad was given a diagnosis of Waldenstrom?s macroglobulinaemia about 6 or 7 years ago and has undergone oral chemo on and off during this time
Unfortunately I was diagnosed with Myeloma in August 2010 when I was 48 and also have undergone 6 cycles of CDT and am due to have a SCT in April/May. I know when I was diagnosed Dad thought thzt he had "passed " something onto me genetically – is there a link at all that you are aware of – I have 2 adult children and 2 brothers and I am aware they have this thought at the back of their minds.
Thanks
Mandy

[ellenModerator]

Hi Mandy

I am sorry to hear that your Father has Waldenstroms Macroglobulinaemia (WM) and that you have been diagnosed with myeloma and I can understand your concerns that there may be a genetic link

Myeloma and WM are related conditions both being cancers of plasma cells within the bone marrow. They are not considered to be inherited cancers however the exact causes are not known. A number of risk factors have been identified and whilst they can occur more than once in families this is very unusual. It is likely that the reason some people develop myeloma and related conditions is not down to one single factor but rather a combination of many different factors.

I hope that this has been of some help, but please do not hesitate to contact me on the freephone Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk

Ellen

[AMcGuireParticipant]

Hi Clarabel, I'm Angelina. I see your post is from February so hopefully you have got all the answers now that you were hoping for.
My husband John was diagnosed with AL Amyloidosis and Multiple Myeloma in December of 2007 (4 1/2 years ago).
Like your dad I felt the tests were going on forever – bone marrow biopsies, x-rays, endless blood tests. He finally got started on treatment in the March of 2008 – 3 months AFTER diagnosis. I was tearing my hair out watching his health deteriorate. By that time, he'd broken 7 back bones, his spine had crumbled so he lost 5 inches in height, he'd lost 6 stones in weight and was generally dying before our eyes.
Anyhow, I believe the testing and waiting did him good as the medical staff were able to gather a complete picture of his MM and Amyloidosis. He was given CTD – Cyclophosphamide (chemo tablets), Thalidomide and Dexamathasone (steroid). He took these drugs for 6 months then achieved remission. He wasn't expected to survive as he was so incredibly ill, but has proved them wrong as he's still here 4 years later.
He flies down to London every 6 months from here in Stirling (Scotland), to the Royal Free Hospital for his scans. The scanner shows up where all the amyloid deposits are – Johns kidneys in particular are affected.
For the 4 years he has had constant bone pain and takes many pain medications, patches and gels … anything for comfort. He must drink lots (but often doesn't!! grrrr), in order for his kidneys to remain healthy, dialysis has been threatened in the past.
For all they are different medical conditions, they seem to be treated hand in hand. At the last scan (March) Johns Amyloidosis has almost completely gone, the doctors said his scans look very much like that of a "normal" person. Unfortunately his remission has recently come to an end and the MM has reared its ugly head.
I hope I have answered your queries, I will ofcourse be happy to help in any way I can. You know that everyones story/health/life is very different from anothers so John is just an example. Perhaps someone else with Amyloidosis can give their opnions and story to you too to give you a better picture.
Sending love to you and hoping your Dad is well on the mend and coping well with his treatment. xoxoxo

[Angelheart262Participant]

Hi I Have been diagnosed with MGUS, Leukocytoplastic vasculitis, CKD stage three
copd, asthma diabetes 2,heart disease bladder prolapse ovarian carcinoma, ms
They have told me I am on a panel for MGUS and will be checked by my doctor every 12 months they are sending me a pack through the post(which I havent received)
yet. I was given a copy of your leaflet on MGUS and
I wish I had someone I could talk to about this but noone had the time to talk to me.
I have had no tests on my kidneys or bone marrow.
I am so pleased to have this website where I can read and understand.
Hugs to all
Angelheart262
xxxxxxxxxxxx

[HeathParticipant]

Hello. I just wanted to say that Myeloma has a very nasty,distant relative
known as Plasma Cell Leukaemia.Thankfully it is rare (one case a week in UK)but can be highly agressive with a very poor prognosis.
There is little information or research – no doubt because it is so rare.
My wife Sue died of it this April after eight and a half years,which is way beyond the mean rate (22 months I believe)and according to her consultant exceeded any other case he knew of by over three years.
Her treatment was the same as for Myeloma and an autologous BMT put her into remissiom for six years! One complication was that PCL caused complete kidney failure in the first three months so Sue was on home dialysis for the duration.Her tenacity and our hospital's brilliance were
the major factors in Sue's astonishing journey.
As I say there is so little info.(including this web site-no offence)on PCL. I will be quite happy to discuss with anyone affected.
Heath

[DaiCroParticipant]

Hi Heath,

I am not familiar with, nor have I ever heard of PCL and I thought that my knowledge of blood related diseases was pretty good. I am heartened to hear that you got so much 'extra time' with Sue… remarkable given the prognosis and the accepted mean rate. 🙂

But I am aware of it now and will keep a keen ear out for any other mentions.

Perhaps there is need for this site to have a section or a standing order on a pdf that notes and annotates related blood disorders… especially those that use similar treatments and medicines.

I'm glad to make your acquaintance. 🙂

Dai.

[MinParticipant]

Hi Heath,
I was really interested in your post, and it has left me needing to ask more questions of the healthcare professionals. Before my husband started the treatment he is currently on we were called in by the consultant who told us Peter had plasma cells in his blood. I did not understand what this meant and when asked I was told it was 'the cancer' He went on to say Peter had had them before he commenced Revlamid but he did not mention it because he thought they would respond to Revlamid which they did but returned again.
I now know I need to ask some more searching questions about the type of plasma cells they were/are and if they have gone again!
I am sorry for your loss Heath, but comforted by of the extra time she was able to gain with you. Thank you for a really interesting post
Min

[GillParticipant]

I am so sorry to read your post regarding your wife's death. We all take our blood for granted as a nothing and then,when we get into the world of blood problems, we start to realise just what can go wrong.

I do hope you are starting to come to terms with your loss and wish you well

Gill

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