[ellenModerator]

Hello and thank you for your post on the forum.

I am sorry to hear that your step mum is experiencing anxiety attacks and struggling to find support, I hope you don’t mind if I also make some suggestions? My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. We do have a number of services here at Myeloma UK as potential sources of support for your step mum – please do pass these suggestions on to her if you feel they are appropriate:

• 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:

https://www.myeloma.org.uk/how-we-can-help/talk-to-someone/

• Meet others.  We have a number of services where carers and family members (as well as patients) can meet with others who may have shared experiences and can be a source of support – this includes Myeloma Support Groups (there may be other groups in the area), Myeloma Infodays and the Discussion Forum for carers on our website. You can find out more about these services here:

https://www.myeloma.org.uk/how-we-can-help/meet-others/

The Myeloma UK PEER programme is another option for your step mum to connect with another person who is also a carer of 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 one-to-one telephone call.  You can read more about the programme and how to access it here:

https://www.myeloma.org.uk/peer-network/

• Finally, do encourage your mum to talk with the clinical nurse specialist (CNS) at the clinic your dad attends about other local sources of support.  The CNS may be able to signpost to local services that might be a help.

I hope this has been helpful. 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 – I or one of my colleagues can clarify things for you further. Alternatively you can email askthenurse@myeloma.org.uk with any questions.

 

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

[ellenModerator]

Dear Pennie

I am sorry that you were unable to speak to a Myeloma Information Specialist or that no one replied to your post over the weekend.

As you know Scarlet fever is most commonly diagnosed in children but it is contagious and can occasionally affect adults. I suspect – although I can’t be sure – that your grandsons likely already had the beginning of scarlet fever when they stayed with you – these things often take several days before symptoms are obvious. So if your husband was in close contact then he may be at risk. For this reason it may be worth him reporting this to his doctor or nurse specialist – they may want to give him a course of antibiotics to be on the safe side.

If your grandchildren have started on antibiotics they may well still be contagious for 24 hours after these started. If they are not being treated with antibiotics they will be contagious for about two weeks after they developed symptoms.

I hope this has been of some help, but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline – I or one of my colleagues can clarify things for you further. The Infoline is open Monday to Friday 9am to 5pm. Alternatively you can email directly to askthenurse@myeloma.org.uk we aim to respond to emails within three working days.

With best wishes

Ellen

[ellenModerator]

Good morning Dave

I’m sorry that you have, as yet, not received a response to your post – it may be that no one who has had an allogeneic (donor|)  stem cell transplantation (SCT)  has read your post. I hope someone comes along. In the meantime I hope you don’t mind if I reply.  My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

We have an Infosheet specifically on allogeneic SCT which I have attached, we also have PEER members who have had allogeneic SCT. Our PEER members are patients and families who have said they are happy to share their experiences with others on the phone.

If you think this would be helpful or if you would like to chat things through, then please do call the Myeloma Infoline on 0800 980 3332 or email askthenurse@myeloma.org.uk

With best wishes

 

Ellen

[ellenModerator]

I am sorry that, as yet, no one has replied to your post. I hope you don’t mind if I do, my name is Ellen, I am one of the Myeloma Information Specialists at Myeloma UK.

Anyone suspected of having myeloma should be referred to a haematologist. Myeloma is a very individual and complicated cancer and the diagnosis involves a whole range of tests and investigations. Generally you should have any results within a week to ten days.

If you would like to talk to me or one of my colleagues please call the Myeloma Infoline on 0800 980 3332 or email askthenurse@myeloma.org.uk. We will do our best to answer any questions you have, or clarify anything that you’re not sure of.

Meanwhile here is the link to our ‘Myeloma – You Essential Guide’ which I hope is helpful.

http://www.myeloma.org.uk/information/myeloma-uk-publications-list/essentials/myeloma-your-essential-guide/

With best wishes

Ellen

• This reply was modified 8 years, 10 months ago by  ellen.

[ellenModerator]

Hello Eric, I hope you don’t mind me replying. My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

If you are taking Revlimid and have been having symptoms of diarrhoea or any change in the frequency or urgency with which you need to open your bowels then you should discuss this with your haematologist who may recommend a referral to a gastroenterologist. Revlimid can sometimes cause a condition called Bile Acid Malabsorption which can be easily treated. So please do speak to your doctor.

If I can clarify anything for you, please do call me on the Myeloma Infoline on 0800 980 3332 or email askthenurse@myeloma.org.uk

Ellen

 

[ellenModerator]

I’m sorry that no one has, as yet, replied to your post, it may be that no one on the forum has had a rash with pomalidomide. I hope you don’t mind if I reply, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK.

Pomalidomide, like many other drugs including allopurinol, can cause skin rashes and in some cases these can be quite severe. If the rash is severe then your husband’s haematologist may decide to stop the pomalidomide temporarily and start it off again at a lower dose, gradually increasing it to monitor for symptoms. Hopefully the Piriton will begin to work and ease the situation but it may be necessary to stop the pomalidomide.

I hope this has been of some help, 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 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk

With best wishes

Ellen

[ellenModerator]

Hello Jeff

We have just posted an update on our website on our actions and responses :-

http://www.myeloma.org.uk/blog/news/myeloma-uk-actions-and-response-to-faqs/

I hope this is helpful.

Ellen

[ellenModerator]

It is disappointing news with regard to the withdrawal of pomalidomide and Revlimid (at first relapse) from the Cancer Drugs Fund.

Myeloma UK are continuing to work with NICE on getting drugs approved for use on the NHS without the need for them to be provided via the cancer drugs fund as we believe this is a better sustainable long-term solution. Where drugs  on the cancer drugs fund have had a no from NICE we continue to work with NICE and the pharma companies to see what scope there is for that decision to change Please do keep an eye out for any news of developments on the Myeloma UK website.

Meanwhile for further clarification, here is the link to our Q&A
http://www.myeloma.org.uk/blog/news/myeloma-drugs-removed-from-the-cancer-drugs-fund/

[ellenModerator]

Thank you for posting, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. I am sorry that, as yet, no one has replied, it may be that no one on the Forum has had a similar experience. I hope this won’t put you off posting on the Forum in the future.
Some myeloma patients can develop pockets of myeloma cells – known as a plasmacytoma – either within the bone marrow or outside of the bone marrow. These plasmacytomas behave more like solid tumours and can occur at any time during the course of the myeloma – even after High Dose Therapy and Stem Cell Transplantation, although they are probably more common at relapse.
That said, development of further plasmacytoma may or may not indicate relapse. I have spoken to patients on the Myeloma Infoline who have developed further plasmacytoma but who were not diagnosed as having relapsed, your haematologist will want to carry out a whole range of tests and investigations to determine if this if you have indeed relapsed or if the plasmacytoma (if that’s what it is) is a separate diagnosis. Radiotherapy can treat these plasmacytomas quite successfully.
You may find our Solitary Plasmacytoma Infosheet helpful:
http://www.myeloma.org.uk/information/myeloma-uk-publications-list/other-related-conditions/solitary-plasmacytoma-infosheet/
I hope this has been of some help, 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 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen

• This reply was modified 9 years, 3 months ago by  ellen.

[ellenModerator]

I’m sorry that no one has replied to your post

This may be because no one on the Forum has similar experience. I hope this won’t put you off posting on the Forum in the future.

I hope that your appointment at the NAC went well. It sounds as if you have wonderful support from your family and that they are doing their best to help, but I can appreciate your frustration at not being able to do the things you want to with your son. It is hoped that once treatment stops the production of the abnormal (amyloid) protein that symptoms should improve. It can take some time longer unfortunately for there to be a reduction in the amyloid laid down on organs and an improvement in the function of these organs. It is a slow process I’m afraid.

There may be other ways you can get support; we have a service at Myeloma UK called the PEER Network. This aims to put patients who request support in touch with other patients going through a similar situation. One of our PEER members was diagnosed with AL amyloidosis 10 years ago, I am sure she would be willing to offer support and a listening ear over the phone. If you’d like to find out more about this service and how it works please give our Myeloma Infoline a call 0n 0800 980 3332 or email askthenurse@myeloma.org.uk

We also produce a free AL amyloidosis specific newsletter distributed three times a year. AL amyloidosis Matters includes all the latest treatment and research news along with feature articles relevant to those affected by AL amyloidosis. Do let me know via the contact details above if this is something you would be interested in.

You may be interested to know that Myeloma UK have an annual AL amyloidosis Infoday, this year it is on 20 November at the Park Crescent Conference Centre, London.

Infoday Presentations will include:

– Introduction to AL amyloidosis
– Current treatment strategies for AL amyloidosis
– Future developments for AL amyloidosis
– Management of complications of AL amyloidosis and side-effects of treatment
– Patient experience

I hope that this has been helpful but please do get back in touch if you have any further questions, would like further information about the programmes mentioned or would like to talk anything through

With best wishes
Ellen

• This reply was modified 9 years, 3 months ago by  webteam.

[ellenModerator]

Dear Sandra, My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. I am sorry that, as yet no one has replied to your post, I hope this doesn’t put you off posting on the forum in the future, it is generally very supportive.

I am sorry to hear that your husband was diagnosed so late and that his kidneys had failed. A light chain reading of 36,000 is high and is likely to have caused the kidney damage. Myeloma UK has an Infoguide on Myeloma Kidney Disease which I hope helps to explain things for you. I have provided a link but please let me know if you would a hard copy and I can post one to you.

http://www.myeloma.org.uk/information/myeloma-uk-publications-list/symptoms-and-complications/myeloma-and-the-kidney/

Velcade is a very effective treatment and I hope it is getting on top of his myeloma and reducing his light chains effectively.

Myeloma can be staged but this is only done at diagnosis and tells the haematologist the amount of myeloma (or tumour load) the patient has. It is not particularly useful for determining what treatment a patient should have or what the prognosis is likely to be. The doctor is, therefore, correct in saying that staging in myeloma isn’t particularly important. However, having kidney failure will make a difference to what treatment he gets – Velcade is recommended for those with kidney problems rather than a thalidomide based combination, so your husband is getting what’s best for him at the moment.
I hope this has been of some help 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, alternately you can email directly to askthenurse@myeloma.org.uk and I or one of my colleagues can clarify things for you further.

With best wishes

Ellen

• This reply was modified 9 years, 3 months ago by  ellen.
• This reply was modified 9 years, 3 months ago by  ellen.

[ellenModerator]

I am sorry that no one has yet replied to your post, it may be that no one has had a similar experience to the one you describe.
I hope you don’t mind if I try to answer your question, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK
I am sorry to hear that you are experiencing achy forearms after your treatment. There are several possible causes of this.
One of the recognized side-effects – all be it rare – of bendamustine is pain in the extremities. Lowering the dose of the Bendamustine either temporarily or permanently may help.
Sometimes chemotherapy given intravenously can cause a type of chemical phlebitis. This is where the veins can become irritated and inflamed causing pain, swelling and redness. If this is the likely cause then slowing the rate of infusion can reduce the risk of it happening along with a good flush of saline into the vein before and after the infusion to help protect your veins.
Whilst unlikely, your achy forearms may also be due to muscle weakness. Dexamethasone can cause proximal myopathy (a symmetrical weakness of the upper and/or lower limbs) although this is less likely in someone who has had dexamethasone with no such issues previously.
Your symptoms are certainly worth mentioning to your consultant or nurse specialist.
I hope this has been of some help, 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 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen

[ellenModerator]

Dear Karl I am sorry that no one, as yet, has replied to your post. I hope this won’t put you off posting on the Forum in the future. My name is Ellen and I am one of the Myeloma Information Specialist here at Myeloma UK, I hope you don’t mind if I try to answer your question.

It is good to hear that you have been in remission for a few years and I can understand you wanting to get back into your bicycle training. It is well known and well documented that regular gentle exercise contributes to a healthy lifestyle and has benefits both physical and psychological. Most healthcare professionals would recommend some form of regular exercise depending on the extent of any bone damage caused by myeloma. Exercise can reduce fatigue; improve general fitness, strength and stamina; as well as boost mental wellbeing. It can also help to maintain muscle tone which in turn can support bones which may or may not have been damaged by myeloma.

We generally recommend to patients that regular gentle exercise should form an important part of their normal activities. We would however caution against the kind of exercise which could potentially cause damage to weakened bones. The types of exercise myeloma patients should avoid are high impact exercise or those that cause sudden twisting motions (e.g. golf, tennis).

Walking, swimming, gentle jogging, cycling, rowing and using the cross-trainers in the gym are generally fine, but we would suggest that patients avoid the weight-lifting machines.

Any new exercise, or a return to an exercise regime, should begin slowly and be built up gradually. If you feel any increased pain or sudden pain during exercise you should stop immediately and seek medical advice.

I hope this has been of some help but please do not hesitate to get in touch if you have any further questions – I or one of my colleagues will do our best to help. We can be contacted directly by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332.

with best wishes

Ellen

 

 

[ellenModerator]

Dear Peter

I am sorry that, as yet, no one has responded to your post, I hope you don’t mind that I have tried to clarify things for you.

As you know, Acute Myeloid Leukaemia and Myeloma are different and as such are treated differently following many years of research in developing best current treatment and best current practice.

When Acute Myeloid Leukaemia is aggressive, high risk and likely to relapse after standard treatment, donor (allogeneic) stem cell transplant is the treatment of choice but only feasible in patients with good general health, even in patients who may be deemed ‘older’. It may be the only option available for these patients.

Donor stem cell transplant is done much less frequently in Myeloma as there are significant risks associated with the procedure specifically graft versus host disease, this is especially true for older or less fit patients for whom there may be other more tolerable treatments. The upper age limit at most accredited centres is 50-60 years  though careful consideration on an individual patient basis is necessary irrespective of age.

Myeloma UK has an Infosheet specifically on Allogeneic Stem Cell Transplantation which you can download here: http://www.myeloma.org.uk/information/myeloma-uk-publications-list/myeloma-treatment/allogeneic-stem-cell-transplantation-in-myeloma-infosheet/

I hope this is helpful but if you would like to speak to a Myeloma Information Specialist at Myeloma UK then please do call the Myeloma Infoline on 0800 980 3332 or email directly to askthenurse@myeloma.org.uk

With best wishes

[ellenModerator]

 

Good afternoon everyone. I hope you don’t mind me stepping in to clarify this a little if I can.

You are correct that myeloma is not considered to be a hereditary condition. We know that myeloma is not like some other cancers, for example some types of breast cancer, where a single inherited gene greatly increases the risk of developing it. Rather, it is thought that certain sets of inherited genes may make people slightly more susceptible to developing myeloma but additional factors are needed to have an impact before the cancer develops. Unfortunately, at present we don’t know with certainty what these sets of genes or additional factors are.

We do know that family members of myeloma patients have double the risk of developing myeloma themselves, compared to people with no family connection. A doubling of the risk might sound alarming but it just means that instead of a 4 in 100,000 risk of having myeloma (within the general population), a family member will have an 8 in 100,000 risk. The risk in real numbers is therefore still very small.

Myeloma UK has an Infosheet which may clarify things further, please have a look at it on our website: http://www.myeloma.org.uk/information/myeloma-uk-publications-list/newly-diagnosed/inherited-myeloma-infosheet/

I hope this has been of some help, 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 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk

With best wishes

Ellen

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