[ellenModerator]

I am sorry that you have not yet received any responses to your post. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK, I hope you don’t mind if I reply on this occasion.

Nerve damage or peripheral neuropathy can unfortunately be one of the most significant and problematic side effects of some of the treatments for myeloma. Peripheral neuropathy caused by treatments for myeloma often improves once the treatment that caused it has stopped. However, for some patients this may take some time, others may be left with a degree of neuropathy.

I would encourage you to speak to your medical team (haematologist and clinical nurse specialist) as peripheral neuropathy can often be managed and the symptoms improved.

Treatments for peripheral neuropathy can include the use of drugs such as gabapentin, pregabalin, duloxetine or amitriptyline. These drugs are commonly used in the treatment of other conditions, but they are also effective in managing peripheral neuropathy. However, alongside medical treatments, there are non-medical strategies which can be effective at managing peripheral neuropathy. These can include “cooling” menthol creams or creams that create a warming sensation, such as capsaicin cream. Some patients also report finding relaxation techniques and complementary therapies such as acupuncture, gentle massage and reflexology helpful in managing their symptoms.

The following resources on our website may also helpful:

• Our Ask the nurse blog on peripheral neuropathy
• Peripheral neuropathy and myeloma video
• Our Peripheral neuropathy Infosheet

Our Patient Diary has a section to record symptoms and side effects. This may be useful for you to keep track of your symptoms and to help accurately describe them to your medical team. To receive a physical copy of our Patient Diary, or any of our other publications, you can order them using this order form or by calling our Myeloma Infoline as below.

I hope this has been helpful but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk

Ellen

[ellenModerator]

I am sorry that you haven’t had a response to your question as yet and I hope you don’t mind me replying on this occasion. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.

Normal/healthy free light chains can usually be found in the blood in small amounts (3.3 to 19.4 mg/L for kappa free light chains and 5.7 to 26.3 mg/L for lambda free light chains). For context, we often speak to patients whose light chain levels are in the hundreds and even thousands.

The levels of the free light chains can also be compared with one another. This is done by dividing the kappa and lambda free light chain levels to calculate the free light chain ratio – a normal ratio is between 0.26 to 1.65. The free light chain ratio can be interpreted by a haematologist to understand more about the nature of a patient’s condition.

The International Myeloma Working Group provide criteria for the diagnosis of myeloma. They state that the definition of active myeloma includes more than 10% abnormal cells in the bone marrow or the detection of a plasmacytoma, along with one or more myeloma defining events – one of the possible myeloma defining events is a serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved light chain is at least 100mg/L. However, it is important to keep in mind that it can be normal for the free light chain levels to fluctuate up and down and your medical team will be monitoring for any upward trends.

Whilst the free light chain ratio is important in helping to make a diagnosis of myeloma or progression from a related condition, these test results alone only give a part of the picture. To make an accurate diagnosis, a haematologist would need to look at the results of a range of tests. These include looking at the healthy blood counts (red blood cells, white blood cells and platelets), as well as measuring kidney function and blood calcium levels – all of these can be negatively affected if smouldering myeloma progresses to active myeloma. A haematologist may also want to order additional investigations such as a bone marrow biopsy or imaging scans such as CT or MRI.

If you haven’t already found it on our website, our smouldering myeloma Infosheet may be helpful.

I hope this has been helpful, but if you have any further questions, please feel free to email myself and my colleagues at askthenurse@myeloma.org.uk or alternatively you can call the Myeloma Infoline on 0800 980 3332.

With best wishes

Ellen

• This reply was modified 1 year ago by  ellen.

[ellenModerator]

My name is Ellen and I am one of the Myeloma Information Specialist at Myeloma UK. I answer the Myeloma Infoline (0800 980 3332) and the ‘Ask the Nurse’ email service (askthenurse@myeloma.org.uk) with my colleagues Kim and Hayley. We take calls and answer emails Monday to Friday 09.00 until 5.00.
The Myeloma Infoline is a quality accredited, Freephone service – which provides information, emotional support, practical advice and a listening ear when you need it, is open most public holiday – we are open today. Please do call if you would like to talk anything through.

[ellenModerator]

I hope you don’t mind me replying – my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.
You may be interested in our ‘Early Diagnosis Working Group’- MGRS gets discussed by this group (in the MGUS group)and is a major issue for clinicians (and patients) so we have plans to produce best practice papers for clinicians which will influence our PI. Contact the email address below for more information on what we are doing currently and our plans for the future:-
EarlyDiagnosis@myeloma.org.uk

• This reply was modified 3 years, 7 months ago by  ellen.

[ellenModerator]

This is a very interesting and emotive thread, however at Myeloma UK we cannot recommend patients import treatments from other countries as we have no way of determining how they are made or regulated. Lenalidomide (Revlimid®) maintenance is being appraised for use in the NHS in the UK. We know this is frustrating, but be assured we at Myeloma UK are doing everything we can to advocate for this treatment including our recent treatment survey on lenalidomide. Ellen Watters (Myeloma Information Specialist)

[ellenModerator]

Thank you for posting on the Discussion Forum, I am sorry that as yet you have not had a response – I suspect that as your query is a very complex one – other forum users may not have experience of the issue you describe. I hope that you don’t mind if I try to clarify things for you. My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

I hope that by now you have had a chance to speak to your nephrologist regarding the results of the further testing for paraprotein. If there is any concern that they may be a diagnosis of myeloma – then a referral to a haematologist would be appropriate – if this has not happened it is perfectly reasonable to ask why.

There can be some similarities with myeloma (and other associated conditions) and IgA nephropathy and the investigations you are having will help your doctor to identify the cause of your symptoms. Some myeloma patients can experience kidney issues for a variety of reasons – but without knowing your results it would be impossible to say with any accuracy whether the symptoms you have are related to either or both, hopefully the results of the kidney biopsy will provide clarification.

It can indeed feel overwhelming whilst you are trying to get some answers, particularly when you feel as unwell as you do. It may be worth getting in touch with your consultant’s secretary again to explain how concerned you are in relation to getting a diagnosis, and that your symptoms seem to be getting worse in some respects. You could ask if your investigation appointments and your clinic appointment could be brought forward at all. Your GP may also be a source of support for you.

I hope that this has been helpful but if you have any further questions, that I and my colleagues may be able to help with, or you would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, or alternatively you can email directly to askthenurse@myeloma.org.uk

Ellen

[ellenModerator]

I am sorry that, as yet, no one has replied to your post. It may be that no one who has seen your post has had the same issues as you.

My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

You are quite right that steroids can increase levels of sugar in the blood and in some (rare) cases can bring on steroid induced diabetes (temporarily).

21 is quite high for blood sugar levels – was this taken shortly after eating?

It may be an idea – if you haven’t already and if the sugar levels are still high – to call your clinical nurse specialist at the haematology department you attend and ask about the sugar level rise you’re experiencing.

I hope this has been helpful. If you have any further questions please do call our Myeloma Infoline on 0800 980 3332 or you can email us directly at askthenurse@myeloma.org.uk

With best wishes

Ellen

• This reply was modified 5 years, 11 months ago by  ellen.

[ellenModerator]

Good morning Lorraine

Its Ellen here – I work with Debbie at Myeloma UK.

As far as we know, the trials office were going to issue letters to the consultants for them to pass on to patients so it may be an idea for your husband to get back to his consultant to query this.

I hope that is helpful but please do contact us if you have any questions. You can speak to Debbie or Jude or myself on the Myeloma Infoline on 0800 980 3332 or email directly to askthenurse@myeloma.org.uk

With best wishes

Ellen Watters
Myeloma Information Specialist

[ellenModerator]

Good morning Mr Allum.

It may be best if you could email the Infodays team at infodays@myeloma.org.uk

With best wishes

Ellen

[ellenModerator]

Dear Ms Richards

Thank you for posting on our Discussion Forum, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. I am sorry that no one has replied to this post as yet. I hope you don’t mind if I make you aware of some potential sources of support which you may find helpful:

• Talk to someone. The Myeloma Infoline operates from Monday-Friday, 9am-5pm and is manned by Debbie, Jude and myself. We aim to provide information and support to anyone affected by myeloma, and we are also here as a listening ear. You can read more about the service here (the number is below):
https://www.myeloma.org.uk/how-we-can-help/talk-to-someone/
• Meet others. We have a number of services where patients, carers and family members can meet with others who may have shared experiences and can be a source of support – this includes Myeloma Support Groups and Myeloma Patient and Family Infodays:
https://www.myeloma.org.uk/how-we-can-help/meet-others/
• The Myeloma UK PEER programme enables you connect on a one-to-one basis with another person who is a myeloma patient. Connecting with someone else who may have some similar experience can be very supportive. Contact through this programme is usually arranged via a telephone call. You can read more about the programme here:
https://www.myeloma.org.uk/peer-network/
• Do speak with your Clinical Nurse Specialist about other local sources of support. The CNS will be able to signpost to local services such as counselling and/or complementary therapies if you feel these might be helpful for you.

If you have any further questions, please feel free to email directly to askthenurse@myeloma.org.uk or alternatively if you would like to talk things through please call us on the Myeloma Infoline on 0800 980 3332.

[ellenModerator]

Thank you for posting on the Myeloma UK Discussion Forum. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK. I am sorry that you haven’t had any replies to date – it may be that no one on the forum has had a similar experience.

Thank you for taking the time to outline the background information – your situation is certainly very complex. It must be very frustrating and frightening that, as yet, no one has been able to explain the reason for the symptoms you are experiencing.

For a diagnosis of myeloma to be made, patients will be referred to a consultant haematologist who will carry out further tests and investigations to either rule out or confirm the diagnosis, you don’t say that you have been referred to this particular specialist – is it something you could discuss with your GP?

Please do consider calling the Myeloma Infoline, Debbie, Jude and myself take calls on the Infoline – 0800 980 3332 – and we will be happy to discuss this with you in order to clarify how a diagnosis of myeloma is made if you think that will be helpful. Alternatively you can email directly to askthenurse@myeloma.org.uk

With best wishes

Ellen

[ellenModerator]

Thank you for posting on the Myeloma UK Discussion Forum. I am sorry that you haven’t had any replies to date. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.

I am sorry to hear that your blood sugars have gone up to 17 from a normal (for you) of below 6. The steroid drug dexamethasone is one of the drugs given on the Cardamon trial which you are on. Steroids can temporarily increase blood sugars and this may be the culprit. Please do speak to your doctor (haematologist), your nurse specialist or trials nurse about this – they will want to know about this. They will want to monitor the situation and may refer you to a diabetic nurse specialist to help you manage this side-effect for the time that you are on this treatment if necessary. In some cases patients may require some medication to help counteract this, but also they will likely ask you to eliminate sugar from your diet while you are on treatment.

I hope that this reply has answered your question but please do consider calling the Myeloma Infoline if you have any further questions or would like further clarification. Debbie, Jude and myself take calls on the Infoline – 0800 980 3332 – and we will be happy to talk things through with you.

With best wishes

Ellen

[ellenModerator]

Dear Myrna

Thank you for posting on the Myeloma UK Discussion Forum. I am sorry that you haven’t had any replies to date. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.

Some anti-myeloma treatments, alongside some supportive drugs such as zoledronic acid (Zometa®) and indeed the myeloma itself may have an effect on the kidneys, and kidney function is monitored routinely in myeloma patients here in the UK.

If your husband’s myeloma is currently stable then his doctor (haematologist ) may decide to stop his zoledronic acid and restart it again if necessary at some point in the future.

I’m not aware that diet can improve kidney function – although it is generally a good idea to have a healthy well balanced diet where reducing salt intake may be better for the kidneys – but I do know that it is very important for your husband to try to drink 2 -3 litres of fluid per day – this will go a long way in helping keep his kidneys flushed. However, that alone may not be as effective as dealing with the cause of your husband’s deteriorating kidney function.

Here is a link to one of our publications which may be helpful: https://www.myeloma.org.uk/information/myeloma-uk-publications-list/symptoms-and-complications/myeloma-and-the-kidney/

If you have any further questions, please feel free to email directly to askthenurse@myeloma.org.uk

With best wishes

Ellen

• This reply was modified 6 years, 6 months ago by  ellen.

[ellenModerator]

Dear Lisa

Thank you for posting on the Myeloma UK Discussion Forum. I am sorry that you haven’t had any replies to date. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.

Thank you for taking the time to outline the background information in your case – that is helpful.

Unfortunately as you may know at the moment no definitive test yet exists that shows which patients diagnosed with MGUS will progress to myeloma and who will remain stable long-term. As you know the majority of MGUS patients do not go on to develop myeloma and as yet the cause of progression from MGUS to myeloma is not fully understood but as you correctly state probably involves changes at genetic level – research into this is ongoing. In the absence of any symptoms a GP would not be minded to refer all patients to a haematologist or to order genetic testing (florescence in-situ hybridisation – FISH test), as in most instances this would not alter management of the situation. As you may be aware FISH testing provides a ‘snapshot’ of the blood at that moment in time and we now know that genetic profiles can change from test to test.

As a result guidelines outlined by The British Committee for Standards in Haematology (BCSH) do not currently recommend testing of MGUS patients.

In contrast NICE guidelines for the diagnosis and management of myeloma patients (2016) do recommend FISH testing is undertaken on the bone marrow biopsy sample in order to provide prognostic information. Whilst this information – gathered within clinical trials – is contributing to the development of individualised treatment for myeloma patients, research in this area is also still ongoing and we are not yet in a position to stratify treatment for individuals.

I will feedback your comments to my colleagues here at Myeloma UK and within the wider myeloma community when the opportunity arises. If you would like to discuss this further please do get back in touch via email to askthenurse@myeloma.org.uk or alternatively you can call the Myeloma Infoline on 0800 980 3332, Debbie, Jude or I will do our best to answer any questions you may have.

With best wishes

Ellen

• This reply was modified 6 years, 10 months ago by  ellen.

[ellenModerator]

I am sorry that, as yet, no one has replied to your post. It may be that no one has read your post yet who has experienced quite the symptoms you describe. I hope you don’t mind me replying – my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

The symptoms you describe may or may not be due to side-effects of the treatment you are receiving for your myeloma. I wonder if you have access to a Clinical Nurse Specialist (CNS) at the clinic you attend? A myeloma CNS will be able to provide additional information and support with regard to your specific situation, such as assessing and dealing with side-effects. Sometimes, for example, troublesome side-effects can be resolved by adjustments to the way the drugs are given, their dosage or by introducing another drug to manage symptoms. For instance, we know that the D part of your VTD treatment – the steroid dexamethasone – can commonly cause tremors and loss of muscle resulting in weakness of the legs.

It may be that your CNS would be able to liaise with your doctor who may suggest a lowering of the dose of the dexamethasone or they may wish to see you to assess things more thoroughly. Please do speak to your CNS or doctor – they will want to know of the symptoms you are experiencing.

I hope this has been helpful. If you have any further questions, please feel free to email directly to askthenurse@myeloma.org.uk or alternatively if you would like to talk things through please call us on the Myeloma Infoline on 0800 980 3332.

With best wishes

Ellen

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