Dear Dai

I have just been reading on this site's myeloma home page the summary from the 14th International Myeloma workshop, held in Japan, which states how Pomalyst is effective for relapsed and refractory myeloma patients who have been through a number of treatments – which I am sure you know quite a bit about this new drug.

Apparently…[Read more]

Hi Tanya

I remember your posting,All parts of the past,and future,with lots of painful memory's and your dad more or less choosing to ignor his ill ness for the sake of alcohol .

This will be a sad time for you as so many issues not resolved,but you can only do so much,you cannot change your dads future,be kind to yourself,for give…[Read more]

Hey Jo Jo

Glad you are out of hosptall and on the mend. Hope all goes well with next cycle

Cyber hugs (as Tom so nicely puts it)
Love Jean xx

Hi Jo

Nice to know you still with us,you have been in my thoughts,Keith Marie and you all went quiet,we know Keith's in hospital and at last you have posted.

You are going to have to teach your husband to post,tell him we were getting worried!!

It,s a long haul getting yourself. Fit after Pnuemonia , it is just a blip,make sure you get…[Read more]

Hi Debs

One of my main symptoms before being diagnosed with myeloma at aged 52 was flushed cheeks, sweating and hot flushes on the upper part of my body. When we went to Majorca the year prior to my diagnosis of myeloma, the icy air conditioning in the hotel was a complete bonus for me but my family were sleeping under many blankets to keep…[Read more]

Dear Dai,

I am so sorry to hear about your current situation. It's certainly a serious issue which will no doubt face a lot more of us when we have tried various different types of treatments for myeloma. It must be a considerably anxious, stressful and worrying period for both of you as well as your close family. I would also feel angry and…[Read more]

Hi Rob

My husband is 69 years young this year has had Myeloma for 2 1/2 years CDT did nothing Velcade got him in a position for SCT he has had only 6. Months remission,but he is ready for the next treatment which we think will be Revidimide .he is in a good frame of mind which helps.

My husband has looked very ill at times weighing 60 k…[Read more]

Hi Pete and all

Well done Pete 9 years brilliant 🙂 long long may it continue.

We are just back from consultant once again she was ahoy with Franks bloods. But after the news of the other day "NI indication of myeloma in blood" started to bug me. As I said in previous post Franks protein had been dropping long before treatment started. So…[Read more]

Hi Rob

I was going to say a warm welcome to the site,but running out of options,is not welcome

You do need some of the more experienced people to tell you if there are any more option s or Ring the myeloma nurse she might be able to help.

You do not say what age your mum is and I do think it might have some bearing on her position and…[Read more]

Hi Dai
I can understand you being angry,

You know you have to keep your eyes wide open,not giving Zometa early is an example.

Why wait?? Ring up speak to someone about the injections,this gives them time to have a talk,before they see you again.Eve

Hi Debs
I think I'd pop into the GP too, it could be the sun…. If you've had chemo you are more at risk of burning, it could be hormones as well and even …. As you have small children …there is a childhood illness called 'slap cheek syndrome' which is a virus rash you could pick up I suppose, I've not looked it up at all but if it…[Read more]

Hi Andy
Brilliant news for you and Steph, it taken a long time but lets hope the pps stay down there for a very long time. I'm so pleased.

Dai .. nice to see you are staying on the straight and narrow with this treatment so far

Ali it's good to hear your mum is doing so well

And Vikki I admire Colin's get up and go back to work but is it…[Read more]

Hi Ella

My advice is to bring appointment forward. My hubby Frank smouldered for 6 and 1/2 years. Then he had a pain in his left side. Tried to coax everyone Including himself that he had pulled a muscle. Consultant sent him for an MRI which showed up a small lesion on ribs. When he saw radio therapist she said it was so small she wouldn't do…[Read more]

Hi Wendy
Peru wasn't shelved permanently but I had chest infection after chest infection so thought thin air might be a step too far and was going to leave it until later, I've not asked again.
I get the bone marrow result next week. If it is ok he thinks I might have up to 2 years before I need more treatment but as the sflc went 43, 58, 119,…[Read more]

Hi Wendy

It is the only way to do it

Remain positive and get out and do as much as you can!,
Have bought new Motorhome scaled to a small one,we always said we would do the UK when we were older,but it looks if Slims health has bought UK near.
A moterhome. Floats are boat,not one for hotels unless its some were like St Lucia.
So glad…[Read more]

Hi Andy

I am so pleased for you and Steph. I am sure you are over the moon. Enjoy your drinks you deserve them, it's about time you had good news 🙂

Love Jean x

Ha Wendy
I know, but to be fair I was only going to Spain, and only the myeloma would not be covered, but yes it was a risk. I'd have been a lot less gung ho if I'd gone to Peru as originally planned. And when I booked it he thought it might go down as the chest infections have all gone now and I'm really feeling well, if slow at walking…[Read more]

Gill that is a really lovely photo 🙂 . I'm sure it brought back wonderful memories.

Love Jean xx

Ann that's great about Pete going back to work I'm sure you are both delighted that he has come so far in such a few weeks. Well done Pete 🙂 . Frank also has no energy, he is eating a little and had a choc ice cream this afternoon. He also had a Guiness last night and is having another one tonight. He had a sip of my wine and he liked it but…[Read more]