Hi Eve

Don't understand why hospitals all differ. Franks consultant is organising a PET scan for him. As she said no myeloma showed up in blood and as his PPs were falling before treatment started it is the ONLY way to find if the myeloma is active and to what extent. Eve you fight Slims corner with all your strength – keep nagging until they…[Read more]

Hi Jo

Good to see you up and running now, now you stay away from that pneumonia you know it isn't good for you.

Stay Well Jo and Catch you Lata

Love Tom Onwards and Upwards xxx

Hi Dai

Just a quick note,I think Janet would benefit from this site,cannot get Slim on it,says its my thing, but as time goes on he wants to know more and has started to watch the info videos on here.

I have been trying to get the Myeloma team to consider a PET scan for Slim,but falls on deaf ears,say they do not do PET scans for…[Read more]

Hi Dai

I have just looked up the other trial mentioned on this sites myeloma home page, where it mentions the new ENDEAVOUR trial which appears to be the same as the upcoming MUK five trial offering Carflizomb + Dex v Velcade + Dex.

You would need to read through all of the eligibility criteria for the Endeavour trial because it appears to…[Read more]

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 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 Debs

Just a thought, but could your cheeks be anything to do with your hormones?
I sometimes get a hot face and I presume it's just a natural thing.
Chemo. leap-frogged me past any sort of menopause, but I suppose our bodies still have a few side-effects to spring on us every now and again.

Hope this helps. 🙂

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

Hi Sue.

I'm sure you will find the ideal spot for Michaels ashes and you will be at peace with it. You mentioning the cricket ground brought back memories of scattering my Dads ashes several years ago. Funnily enough when we as a family were discussing where to scatter his ashes Scarborough was a strong candidate. Eventually we all came to the…[Read more]

Hi Gill.
What a fantastic photograph.
I'm sure it will provide you with plenty of smiles and quite a few tears in future but what a marvellous keepsake it will be.

Love Andy xxx