Thank you for posting on the Discussion Forum. I am sorry that you haven’t received any replies to your post to date. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
I hope that your husband is feeling better in the last few weeks. With regard to the detection of light chains in your husband’s blood tests I hope his doctor (haematologist) has been able to clarify the situation in his particular case. Everyone has a ‘normal’ range of light chains in the blood, and the presence of infection can cause light chain levels to fluctuate – it is the level of light chains, and more significantly the trend in these blood test results that his doctor will monitor during his clinic visits.
If you have any 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
With best wishes
Debbie
Dear Angela
Thank you for posting on the Discussion Forum. I am sorry that you haven’t received any replies to date. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
We understand from the Myeloma XI Trial Office that all patients who were receiving vorinostat (Zolinza®) within this trial have recently been asked to stop taking it as data collected to date has identified that some patients were experiencing side-effects beyond the acceptable threshold on this drug. We have additionally been informed that a letter from the trial office with further explanation will be forwarded to all participating patients via their hospitals.
I hope your husband is feeling better, and if you have any 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
With best wishes
Debbie Gardiner
Myeloma Information Specialist
Hi Emma
Thank you for posting on the Discussion Forum. I am sorry that you haven’t received any replies to your post. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
Unfortunately here at Myeloma UK we are not aware of any insurance companies that will provide life insurance cover to myeloma patients. This is because, as far as we are aware, insurance companies rarely provide cover for pre-existing conditions. I suspect this may be why you haven’t received any replies to your post to date.
With regard to Will writing services – I wonder if you know about our Myeloma UK’s partnership with McClure solicitors which offers our supporters access to a free Will writing service? You will not be charged a fee for McClure Solicitor’s services – you will instead be invited to consider making a donation to charity. I have attached a link for you to read more about this service here:
http://www.mcclure-solicitors.co.uk/wills
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
With best wishes
Debbie Gardiner
Myeloma Information Specialist
Dear Rosie
Thank you for posting on the Discussion Forum. I am sorry that you haven’t had any replies to your post to date. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
I am sorry to hear of the difficulties your dad has been experiencing. I hope that some of his symptoms have been alleviated by his current treatments.
If you have any 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
With best wishes
Debbie Gardiner
Myeloma Information Specialist
Dear Sue
Thank you for posting on the Discussion Forum. I am sorry that you haven’t yet received a response. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
I am sorry to hear of the skin problems you have been experiencing – although some patients do frequently report dry skin following high-dose therapy, and it is possible to develop skin infections, it is unusual to hear of so many different issues consecutively. This may explain why you have not received a response to date on this forum.
A dermatologist is the expert in diagnosis and management of skin problems and they are best placed to advise you. Please do talk to your doctor (haematologist or GP) if the situation worsens prior to your appointment.
I am sorry not to be able to assist further on this occasion but if you have any other 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
With best wishes
Debbie Gardiner
Myeloma Information Specialist
Hi Jan – the paraprotein level can fluctuate slightly from test to test so please don’t be worried about this slight increase. Please ask your husband’s doctor (haematologist) to elaborate at the next clinic appointment. Generally speaking the doctor will be looking at the trend of the paraprotein level over several blood tests, rather than one change in isolation.
Hi David – just to clarify – I believe the figure 2500 will have been your light chain level (which can run into 1000’s), as opposed to paraprotein level (which is usually in the 10’s).
With best wishes
Debbie Gardiner
Myeloma Information Specialist
Hello
My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK. I am sorry that no-one has yet replied to your post, and I am sorry to read of the difficulties your partner has experienced.
I wonder if you and your partner have had an opportunity to reflect on the experience with his doctor (haematologist) or the team? Whilst it is always possible for an individual to have an adverse reaction to a drug, and the drug I believe he may have been on (zoledronic acid?) can have an effect on kidney function, there is also the possibility that some of your partner’s experience was a combination of this and other issues (for example he may have already been developing an infection and this may have contributed to the overall situation). Either way it is clear that you and your partner will want to understand what the team think happened, and what might be done to minimise the chances of a repeat experience. Please do ask for a consultation if you haven’t already.
With regard to the ‘kidney medication’ being stopped after one cycle I believe you may be talking about the drug allopurinol? This drug is usually given for the first cycle of treatment and then stopped. It is given to help the kidneys to process waste that is generated as the myeloma cells are destroyed. The reason it is usually only given for the first cycle of treatment is because this is when the ‘bulk’ of myeloma cells are destroyed. In subsequent cycles of treatment the waste generated is less and this drug is generally not needed.
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
Debbie Gardiner
Myeloma Information Specialist
Hi Ceri
Thank you for posting on the Discussion Forum. I am sorry that you have not had any replies yet. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
The situation you describe with your husband is unusual. When patients present with confusion and hallucinations there can be multiple potential medical explanations for this, but usually after investigation the health care professional team are able to ascertain a cause. You haven’t mentioned who is in charge of your husband’s care at the moment, but whoever that doctor is (palliative care, haematologist or GP?) perhaps you could ask them to review the whole situation with you? I have made a few notes here that I hope will help with having a discussion with the doctor:
• Could this be happening as a result of myeloma disease progression – if your husband has not had any treatment for his myeloma for some years now – is the status of his myeloma being monitored?
• Common causes of confusion that can occur in myeloma patients include hypercalcemia (high calcium levels), infection (urinary tract, chest infection or other infection) and dehydration.
• There may also be other potential causes not necessarily linked to myeloma – for example has your husband’s blood sugar levels been checked recently?
I’m sure all of these potential causes will have been investigated already, however in the absence of an explanation, I think it is reasonable to ask the doctor to review the whole situation with you so that you can be assured all avenues have been explored.
I hope this has been helpful but if you have any questions, or would like to talk things through, please feel free to email us directly to askthenurse@myeloma.org.uk or alternatively you can call the Myeloma Infoline on 0800 980 3332 – Ellen, Jude and I take calls on the Infoline and we will be happy to talk with you.
With best wishes
Debbie
Myeloma Information Specialist
Dear John
Thank you for posting on the Myeloma UK Discussion Forum. I am sorry that you haven’t had any replies to date – I am sure you will be hearing from others in the near future. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
You haven’t mentioned in your post whether your wife is on active treatment for her myeloma or whether she is in remission or ‘plateau’ (a period of time when the myeloma, and the paraprotein level, is relatively stable).
Either way there is no reason to suspect that stopping pamidronate will lead to her myeloma getting worse. Pamidronate (Aredia®) is a supportive drug rather than an anti-myeloma treatment. It is primarily given to help prevent bone damage that can be caused by myeloma. At the moment there is variation across the country in terms of how long patients stay on this drug for. The NICE (National Institute for Health and Care Excellence) guidelines for the diagnosis and management of myeloma patients (2016) recommend that this drug (described as a bisphosphonate) is given for a minimum of two years. Thereafter there is much variation according to doctor/patient preference. Some patients automatically stop taking the bisphosphonate after the two year period and then it is resumed when their myeloma becomes active and requiring further treatment (relapse). It is very important that the drug is stopped if there is evidence of ONJ as in your wife’s case.
I hope that this reply has answered your question and will provide some reassurance to you both but please do consider calling the Myeloma Infoline if either of you would like to clarify the situation or to answer any other questions you may have. Ellen, Jude and myself take calls on the Infoline – 0800 980 3332 – and we will be happy to discuss this with you if you think that will be helpful.
With best wishes
Debbie Gardiner
Myeloma Information Specialist
Hi Susie
Thank you for posting on the Discussion Forum. I am sorry that no-one has commented on your post to date – I am sure they will in due course. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
The haematology team at your hospital will be able to advise you on their practice. There is some variation on timing of blood tests at different hospitals – this is sometimes because of doctors preference but it can also be related to an individual patient’s situation. Depending on your current blood levels the doctor may be happy with a set of bloods at the beginning of each cycle of treatment, but others may like to see a reading more frequently.
If you live a distance from the hospital where you will be receiving treatment it might be possible to arrange to have bloods done locally at the GP practice. Again talk with your team about this. As long as the GP practice is happy to take the bloods, and they have instructions on what is required (usually written on a blood test form provided by your haematology team that you can pass on) this can work well.
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
Debbie Gardiner
Myeloma Information Nurse Specialist
Thank you for posting on the Myeloma UK discussion forum. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
I am sorry that no-one has yet replied to your post. I suspect this is because the situation you describe with the additional diagnoses of LGLL (large granular lymphocytic leukaemia) and morphea in addition to MGUS/myeloma is very unusual and I suspect extremely rare. Certainly my colleagues and I here at Myeloma UK have not come across this in many years of working with myeloma patients.
I am sure you will already be aware of the organisation Bloodwise who provide information and support to patients with LGLL, but in case not I attach a link to their patient information booklet here:
https://bloodwise.org.uk/sites/default/files/documents/large_granular_lymphocytic_leukaemia_Aug_2011_Interim_Update.pdf
They may be able to advise you with regard to the effect of methotrexate on your liver function, but please do ask your doctor (haematologist) to discuss this with you if you/they haven’t already.
I am sorry not to be of further assistance on this occasion. If would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332. Alternatively you can email directly to askthenurse@myeloma.org.uk
With best wishes
Debbie Gardiner
Myeloma Information Specialist
Hello Gustavo
Thank you for posting on the discussion forum. I’m sorry no one has yet replied to your post – I’m sure they will in due course; meanwhile I thought it would be useful for me to reply – my name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
As you found this discussion forum I am hoping that you have also seen on our website that we have a number of resources and services here at Myeloma UK which may be a source of information and support for your neighbour.
Perhaps when you next see your neighbour, and if you felt it would be helpful, you might mention to him that Myeloma UK is an organisation that provides a range of publications and other resources that might be of interest to him? You might also mention that we have an Infoline service which operates from 9am-5pm, Monday to Friday, and which is open to all at no charge. The Infoline is manned by Ellen, Jude and myself and we will be happy to talk with your neighbour to provide information or to be a listening ear if he would like to contact us. The number is 0800 980 3332.
With best wishes
Debbie Gardiner
Thank you for posting on the discussion forum. I’m sorry no one has yet replied to your post – I’m sure they will in due course; meanwhile I thought it would be useful for me to reply – my name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
As you found this discussion forum I am hoping that you have also seen on our website that we have a number of resources here at Myeloma UK to endeavour to provide information and support to you and your dad. In addition to a number of downloadable publications on the website we are also very happy to send you out hardcopy publications if that would be helpful – we appreciate that publications such as our Infopack for newly diagnosed myeloma patients can be quite bulky to read online, and are also useful to have to refer back to. You can find a list of our publications here:
In addition to written publications we also have a number of videos and animations that you and dad may find helpful. The link to these is here:
From your description it sounds as if your dad is still having the necessary tests to confirm and provide additional information on his diagnosis. Unfortunately myeloma is a complex cancer and can be difficult to diagnose. It is not uncommon for patients and families to describe delays in getting diagnosed, and I am sorry to read that this has been your experience.
If you would like to talk through your dad’s situation please do consider giving us a call on the Infoline service that we offer. The Infoline operates from 9am-5pm Monday to Friday, and Ellen, Jude or myself will be happy to talk things through with you if you feel that would be helpful. The number is 0800 980 3332.
With best wishes
Debbie Gardiner
Thank you for posting on the Myeloma UK discussion forum. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
As far as we are aware there is no connection between myeloma and age related macular degeneration (ARMD). This is not to say that other patients might not have experience of both, as both are more prevalent the older we get, and therefore it is possible that other patients with myeloma may also develop ARMD, albeit independent of their myeloma diagnosis.
I hope this has helped but please call us on the Infoline if you would like to talk this through. The number is 0800 980 3332.
With best wishes
Debbie
Dear Graham
Thank you for posting on the Myeloma UK forum. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK. I am sorry that no-one has responded to your post to date.
As you correctly note LDH, B2M and CRP are not diagnostic tests in their own right (for myeloma or any other conditions). Instead they might be described as indicators of a general systemic (affecting a whole system, or whole body) abnormality.
As you have been diagnosed with MGUS your doctor is monitoring you for signs and symptoms that could indicate a progression of your MGUS to myeloma. That is not to suggest that a progression is inevitable – as I am sure you are aware only a small percentage of MGUS patients go on to develop myeloma.
When a patient is diagnosed with myeloma, as you also note, the levels of these particular blood results are considered in combination with other findings, when the doctor is assessing the patient’s individual presentation of myeloma and their prognosis.
If 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
With best wishes
Debbie
