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 p…[Read more]

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 p…[Read more]

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 p…[Read more]

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 t…[Read more]

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 Speciali…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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 the…[Read more]

Hello Jeff

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

Myeloma UK actions and response to FAQs

I hope this is helpful.

Ellen

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…[Read more]

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 – k…[Read more]

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 – k…[Read more]

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 app…[Read more]

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 app…[Read more]

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 app…[Read more]

 
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 app…[Read more]

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…[Read more]