Hi Magic Moments

Sorry to hear that your husband is having a bad time of it at present.

There is plenty of help and advice available, the specialist nurses on Myeloma UK Helpline are really helpful and knowledgeable. There may also be a local support group in your area.

Your story is not dissimilar to my own experience, emergency admission due…[Read more]

Hi, sorry to hear that you have been diagnosed with MM. Hope your treatment goes well.

The long delay between onset of symptoms and final diagnosis seems to be very common, 6 months in my case due to back pain and fatigue.

There is plenty of support,information and help available for myeloma patients. The Myeloma nurses on the helpline are…[Read more]

Hi Dino

Good morning from Merseyside. Sounds like you are doing really well. The best advice is to do what you are told by the medics. They have seen it all before and are there to look after you.

I had my SCT just over 18 months ago and am doing really well now. Just back back from a few days in Galway,Ireland and the Wild Atlantic Coast.…[Read more]

Hi Graeme

Good luck with your treatment, hope all goes well.

David S

Hi Pav

Sorry to hear that you suspect that you may have MM. First signs for me were a bad back and tiredness. Like you I had elevated calcium ( emergency hospital admission ) and high protein levels.

It is probably a good sign that it has been picked up early.

There is plenty of advice available from Myeloma UK either on the phone, booklets,…[Read more]

Hi Susie and all

I notice that the BBC News website is reporting that the breast cancer drug Kadcyla is back on the list after Roche reportedly cut its price.

As you say, it all seems to come down to money. What seem odd is that if NHS England takes a specific drug off its list then the drug company presumably gets no revenue from this source…[Read more]

Hi Andy

So glad to hear that you have have pulled through and have a recovery strategy sorted out. It really sounds like you have been through the mill with this one. Hope you are back to full strength soon.

More importantly you have your priorities sorted out ie the beer!!! I discovered Purple Moose brewery in North Wales recently during a…[Read more]

Hi Scott

I experienced a lot of fluid retention around my body during initial treatment with CTD which took some time to wear off, this caused the pressure in my eyeballs to increase which was picked up during an eye test, but I didn’t experience any vision problems. My consultant said that it was due to the Myeloma treatment and after a few…[Read more]

Hello Gordon

I can only support whole heartedly your comments about the value of Patient and Carer info days.

I have been to three now at Manchester, Cardiff and Edinburgh and have been surprised at how much I have learnt at each one.

I was diagnosed in 2013 and it was more than 6 months before I spoke to anyone who had Myeloma and this was…[Read more]

Hello Everyone

We have now firmed up on the arrangements and the first meeting of the West Lancs and Sefton Myeloma support group will be held on Tuesday 5th January 2016 at 2.00 at the MacMillan Living Well Centre in Southport.( see http://www.southportmacmillancentre.org.uk)

Details are on the support section of the Myeloma UK website.

With the help…[Read more]

Hello Susie

The flu jab is just one of a long list of inoculations for those who have had stem cell transplants in order to build back the body’s immunity to all the childhood and other bugs which the treatment affects. I have got used to having a bruised arm. Now I know why babies cry when they have their jabs!!

Just had mine last week for…[Read more]

Hi Roseanne

Hope all goes well with your mum’s stem cell transplant.

I had my transplant 18 months ago aged 59. All went well but I was quite tired afterwards for a few months.

They do say that everyone’s experience is different and for me boredom was never an issue. The medical and support staff are in fairly often and there were times when…[Read more]

Hi

The advice is always to speak to the medical experts or the Myeloma helpline if you have any concerns.

Your not alone. Lack of mobility seems to be a common side effect of Myeloma either due to bone damage, problems with the spine and spinal cord, and muscle weakening as a side effect of the medication.

I had all three when first diagnosed…[Read more]

Hi Julian. Sorry that you have had to join the Myeloma club.

Everyone seems to react differently but your symptoms sound very familiar to me. It is really tough whilst you are having the treatment, but for me most of the side effects like swollen ankles and puffy face do wear off in time once you finished. Even doing the basics can be quite…[Read more]

Hello Graeme

I was diagnosed at 59 years old and am now 18 months post stem cell and feeling better than ever.

Everyone’s experience seems to be different, but for me it was quite a while before the fatigue started to wear off. I was OK pottering around the house, light house work etc but no stamina. From reading other posts and articles it…[Read more]

Hi Bijou

Sorry to hear that you are having a rough time of it and have joined the Myeloma UK club. Hearing about a diagnosis of Myeloma is a shock to everyone. Late diagnosis seems to be one of the common problems with Myeloma, in my case I was in agony for two months and could barely move, but had been prescribed Ibrupofen and Paracetomal for my…[Read more]

Hi, sorry to hear that your dad is having problems with the medication. I would certainly agree with Tony that if you are worried then go and ask the experts, that is what they are there for.

I was on 6 cycles of dexi as part of CTD, 4 lots of 20 ( each 2 mg) three times each cycle – I remember eating them with Cheerios for breakfast. The two…[Read more]

Hi Mervyn

Hope you are feeling better soon and coping. I don’t recall anyone say that it is easy, but everyone’s experience seems to be different.

I think patience and common sense are important as well as following the advice of the doctors and nurses. I kept a diary when I was in and have several entires of ` pretty tired’ between days 3 and…[Read more]