[ellenModerator]

Dear Brenda

I’m sorry that no one has yet replied to your post; it may be that no one has had the experiences that you describe. I hope you don’t mind me replying with some suggestions.

AL amyloidosis doesn’t generally cause the kind of pain you describe. I wonder if your husband is also on dexamethasone with his lenalidomide? Dexamethasone can cause muscle wasting and patients often describe aches and pains, especially in the legs. This can also cause some people to lose confidence in their walking and mobility can be affected.

It’s important that your husband describe his symptoms clearly to his doctor and to keep stressing that this is a big problem for him, especially his reduced mobility.

If he can manage to do some regular gentle exercises this may help with his muscle tone and balance, perhaps a referral to a physiotherapist may help.

I hope this helps, but if you have any questions or would like to talk things through then please do call me or one of my colleagues on the freephone Infoline on 0800 980 3332 or email askthenurse@myeloma.org.uk

With best wishes

Ellen  

[ellenModerator]

Dear Wendy

 

I am sorry that you have not received any replies to your post. It is likely that a slow heart rate on CTD is not something that has been experienced by any of the forum users. However, it is known that thalidomide – the T part of the CTD combination – can cause a slow heart rate (bradycardia). It’s not a common side-effect but it is something your doctor will take very seriously.

 

I hope this has been of some help, but please do not hesitate to get back in touch if you have any further questions or if you would like to talk things over. My colleagues and I can be contacted directly by email to askthenurse@myeloma.org.uk  or on the freephone Myeloma Infoline 0800 980 3332. 

 

With best wishes

 

Ellen  

[ellenModerator]

You may be interested to read our news story on this topic:

http://www.myeloma.org.uk/news/prof-gareth-morgan-moving-to-university-of-arkansas-but-to-continue-leading-role-at-myeloma-uk/

Ellen

[ellenModerator]

 

Hello everyone. I thought I would step in as this discussion is becoming a bit heated. There is nothing wrong with lively productive discussion, but can I please remind you all to be mindful of each others feelings. Posters and viewers of these forums are likely to be patients, family members or loved ones, some of whom may be in a difficult place emotionally, so reprimands and accusations are not helpful

 

Can I gently remind you that there are forum guidelines and the registration terms of the discussion board state:

 

“We reserve the right to delete messages containing strong language, defamatory or abusive comments, commercial or advertising content, or any other content we find unsuitable or inappropriate.”

 

To clarify a few points:

 

Younger patients:

Whilst the majority of people with myeloma are over 65, the under 50 section came about in response to users of the forum who had particular issues such as telling young children, coping with work and finances etc.

 

Access to treatment:

Haematologists in the UK are guided by national guidelines on the diagnosis and management of myeloma. We are all very fortunate to be able to receive free treatment on the NHS but the cost implications means that the NHS must be mindful of what drugs, and in what sequence, it can make available to patients free of charge.

 

In addition to drugs approved by NICE (National Institute for Health and Care Excellence), a number of drugs for myeloma are also available through the Cancer Drugs Fund in all areas of England. For more information please contact my colleague Kate on kate.morgan@myeloma.org.uk

 

Myeloma is much more treatable than it ever has been and with the introduction of new drugs, hopefully patient outcomes will improve further.

 

Early Diagnosis:

Myeloma UK knows how important it is to raise awareness of myeloma, especially amongst GPs and we have, in the last couple of years run a campaign “Take 2” specifically to help raise awareness of myeloma with GPs. To date, over 4,000 copies of the myeloma diagnosis pathway have been sent to GPs across the UK. If anyone would like a copy of our diagnosis pathway to take to your GP, then please do let me know.

 

We are also producing a video for GPs about diagnosing myeloma and will be publishing a report about the impact of late diagnosis on patients and their families.

Thank you

Ellen

(Myeloma Information Nurse Specialist, Myeloma UK)

• This reply was modified 10 years, 3 months ago by  ellen. Reason: Add sig

[ellenModerator]

Thank you Helen

You make a very appropriate point. I contacted Brett and asked him the question and this was his reply. I hope this helps clarify things.

The department is the Faculty of Development and Society at Sheffield Hallam University. The research is part of a masters in Health Psychology, therefore its purpose is to gain an educational qualification. As such it was conceived by and is led by me as a student of the course, but supervised by Katie Cutts, one of the tutors on the Health Psychology course and part of the Faculty. The University Ethics Committee approved the research in October. It will be written up as a journal article in order to gain an educational qualification, and it is anticipated that it will be submitted for publication in a relevant journal (the most appropriate journal has not been selected yet but it will be related to Health Psychology).

There are lots of discussion forums and health forums available now with ever increasing evidence to demonstrate how they can improve wellbeing, which you would expect from being able to engage with people who you can relate to, gain support from, and likewise support. I am very much interested in the community spirit which can develop through online forums in general, which I think is very important in today’s society. Health forums are not always suggested to patients though, as such evidence is not well known.

I hope that gives some useful insights, perhaps more than was asked for, but I do appreciate the responses that have come through from your forum particularly when many other things are going on for forum users. So I hope it will be reassuring to give more of an explanation of how useful the participation in the study will be, not just for an education qualification.

Please let me know if there are any further queries.

Many thanks,

Brett

[ellenModerator]

Hello Susan

I hope you don’t mind me replying to your post. This is a topic that comes up from time to time on the Myeloma Infoline.

Eye problems can occur in myeloma patients for a variety of reasons both as a result of the myeloma itself and as a result of the side–effects of certain treatments.

Eye problems associated with myeloma are more often a problem in the early stages before the myeloma has been brought under control by treatment.

There are several potential causes but the most common is a condition called hyperviscosity of the blood. This happens when there are large amounts of paraprotein/free light chains causing the blood to thicken. This can damage the blood vessels in the eye resulting in blurred and double vision.

Dexamethasone (steroid) treatment can cause eye problems following prolonged use because it can increase pressure within the eye and also cause cataracts.

Velcade can also cause problems with the eyes such as blurred vision, infections such as conjunctivitis and eye pain, so please do let your doctor or nurse specialist know that you have these symptoms.

With best wishes

Ellen

[ellenModerator]

Hello all

I’d just like to clear up a few misconceptions about the PADIMAC trial.

The trial is looking at delaying stem cell transplant in those who respond well to PAD (Velcade, adriamycin and dexamethasone). This means that for patients who have gone into remission after treatment with PAD, do not have a stem cell transplant. For those who do not achieve a complete response, they will go straight on to have a stem cell transplant.

We know from previous studies that patients who achieve a good response to their first treatment can be in remission for a long time, whether or not they have a stem cell transplant and in most cases, it may be better to have a transplant when they relapse. The aim of the PADIMAC trial is to see if patients who have had a good response to PAD can safely delay having a transplant, making it an option at relapse.

I hope this clarifies things but please do call the Myeloma Infoline on 0800 980 3332 if there are any questions.

With best wishes

Ellen

[ellenModerator]

I just wanted to let you know that places for this Infoday are filling up fast. There are only 4 or 5 available I'm afraid.

If you wish to register please contact Nic at Myeloma UK on 0131 557 3332

Thanks

Ellen

[ellenModerator]

You can email me directly to askthenurse@myeloma.org.uk or call the Myeloma Infoline on 0800 980 3332 and I can set up a PEER call.

With best wishes

Ellen

[ellenModerator]

I am sorry that your post hasn’t had any replies as yet. I think this is probably because allogeneic (allo) transplants are carried out fairly infrequently in myeloma and perhaps no one with experience of this has read your post.

My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. I speak to lots of patients and families every day on the Freephone Myeloma Infoline, if it would help to talk to me then please do call the Infoline on 0800 980 3332, I will do my best to answer any questions that you have.

I can also put your husband in touch with another patient who has had an allo transplant on our PEER Network programme, on a one-to-one basis over the phone. I would be very happy to arrange this, if you think it would be suitable, please let me know.

With best wishes

Ellen

[ellenModerator]

Sara has asked me to pass on her thanks to everyone who has responded. Please continue to email her with your stories, both good and bad.

Ellen

[ellenModerator]

We have had an amazing response to this, but it would be great if we could just get a few more responses.

So BUMP.

Ellen

[ellenModerator]

Dear Christine

I am very sorry about any confusion regarding access to carfilzomib. Unfortunately, we were given unclear information from the pharmaceutical company who produce carfilzomib about its availability through a compassionate use programme. They have now clarified details of the scheme, the patient access scheme is not a compassionate use programme but it is a named patient scheme – this means that patients must pay for carfilzomib.

With best wishes

Ellen

[ellenModerator]

Good morning, I hope you don?t mind me responding to this topic, it is a question that is asked very commonly and I hope I can clarify some things.

Unlike some other cancers and diseases, like cystic fibrosis or some forms of breast cancer for instance, myeloma is not caused by a single inherited gene. However, people do inherit certain sets of genes which may make them slightly more susceptible to myeloma, but additional environmental factors are needed before the cancer develops. Unfortunately, at present we don?t fully understand what sets of genes these are or what additional environmental factors these might be.

Studies have consistently shown that the risk of developing myeloma is elevated to between 2 and 4 fold in close family members. These studies involve looking at information in cancer registries, census information, death certificates etc. This information is brought together to produce epidemiological data. This kind of data is used to spot patterns in health and disease amongst a population. The largest study to date, involving 11,752 myeloma patients diagnosed in Sweden between 1958 and 2002, showed that there was an increased risk of 4.25. Another study from the Utah Cancer Registry in 1,354 patients also showed a small increased risk in close family members.

Unfortunately, screening or monitoring is still a long way off until more genetic variants are identified that correlate strongly with myeloma.

It needs to be stressed that the increased risk for myeloma family members is still a very low risk and is much lower than the general risk in the population for developing other chronic diseases such as heart disease or other cancers.

I hope this helps but if anyone has any questions or would like to talk anything through then please don?t hesitate to get in touch on the Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk

All the best

Ellen

[ellenModerator]

Dear San

I am sorry that you haven?t had any responses to your question as yet. This is probably because Jaundice is a fairly rare side-effect/complication and the other board users may not have any experience of it.

Jaundice (or yellowing of the skin and whites of the eyes) can happen for a number of reasons. Perhaps the most common cause of Jaundice is inflammation or disease of the liver.

It is known that Revlimid can cause inflammation of the liver and if your doctor thinks that this may be the cause then it may be necessary to reduce the dose of Revlimid or to stop it temporarily.

I hope that this helps but please don?t hesitate to get in touch with myself or one of my colleagues at Myeloma UK, we will do our best to clarify things for you. We can be contacted directly on the Freephone Myeloma Infoline or by email to askthenurse@myeloma.org.uk

Ellen

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