Hi Jo

Slim,s not to bad in the circumstances . He finishes his second Cycle of Velcade on Thursday this week,hid bloods are taking a battering,has had to have platelets every week,but not blood yet,he has managed to fight off an infection,so that has not helped, three years of Myeloma is the best lesson you can have to become an expert on your…[Read more]

hi David

great news news your journey has been the same as mine I believe we joined this forum 5 years ago at the same time as you say never give up keep well
Love Jo

Hi Mandy

you have had a time of it lets hope now you can get better treatment at the new centre you are lucky to have a good one near
keep well love Jo
Hi eve how are you and slim is slim keeping ok my kidneys are rotten they have now fitted a fistula just in cse not what I wanted but hey ho
Love Jo x

Hi Mandy

When you go through all you have and survive it,it should give you a boost knowing that you can fight it,let’s hope the kidneys regenerate and slowly get you back on track.the whole thing is so emotional,once you realise how close things were.
I would not bother trying to remember about ITU,locally they will do a dairy if we asked,but I…[Read more]

Hi Jean

I know it’s a worrying time for you!!! But if Michael has the will to fight it he will,it’s when they put him out and on a Ventilator,the chances diminish,it will take a lot of time to get over this,and they will make decision of his Chemo treatment secondary. But he will get there.

Slim had his Stint in ITU for nine days then the ward…[Read more]

Hi David

Good News is always welcome and specially from you.

I visited the Houses of Parliament on a school trip,and the local MP bought us all orange juices sitting on the terrace. So I hope this was extended to you,with champagne in it!!!!

Hi Keith

You managed to post that’s the main thing,perseverance !!!!,keep going and you will do fine.

I will not offer any advice on SCT,as I am sure things have changed since my husband had his,so this is just a welcome to you. Eve

Hi Molly

I do not know anything about South Yorkshire ,but replying to boost it up,as sometimes post gets passed over. Eve

Hi Woo1967

I take it 1967 is your birth year!!! And I cannot keep calling you Woo,sounds like a dog! But let’s answer your questions first.

There is a free number the top of this page,call it and speak to Ellen or Maggie,they can answer all your questions and send you booklets,this is a must!!!! As you can learn a lot about your condition,so any…[Read more]

Hi Molly

I have just returned from the Royal Marsden were a man named Stuart introduced him self to me,he lives in France and his wife is treated at the Marsden !!!!

He said if you want any information to get in touch with him,he will gladly speak to you!!!!if you put in search the name Stuart,it should throw up postings of his,even put in…[Read more]

Hi Molly

Sorry you had to join us and I’m not sure it’s relevant but Frank and I lived I. South Africa for 10 years 3 of our 4 sons where born there. We came home back to Belfast and it took some time for Frank to get a job. We got all benefits and child allowance etc. as Eve says get advice and hope things go week

Jean x

Dear Helen
I’m so sorry to hear that you have relapsed.. It’s a hard fact to get to grips with, I’m still a bit shocked to find myself at this stage! I’m at the other side of Velcade, hoping it will last as long as possible. Like yourself I’ve been one of these ‘react quickly’ to the drugs but not lasted long. I really hope you get a long…[Read more]

Dear Andy
Where in the lakes are you? I feel I should know this from somewhere but have forgotten. I’m going over there for the weekend. Penrith way I think.
I’m not going to make the Newcastle info day I’m afraid… Been invited to a wedding.. One of the daughters cradle mates and she’s going to be the grooms woman or some such idiocy! However I…[Read more]

Hi Molly

I would be very careful and get some expert advice on any form filling you have to do,CAB should be able to talk you through this.

As you have been out of the country for 6 years,I think you will have to prove you are not a health tourist,but saying that I take it your husband has put many years of tax and Stamps,which should entitle…[Read more]

Ah thanks Eve… yes, guilty as charged of sneaking in my news 🙂

I did get an inkling back in late December and had it confirmed in early January that I’d need to start treatment. Then lots of decision making etc. I am on day 13 of Cycle 1 of VTD now. I’m still able to keep working etc so in some ways it’s just a case of getting on with ‘normal…[Read more]

Hi Helen

I was going to keep well away from this thread as I do not think it achieves anything!!! And any one reading it who is new to Myeloma,will wonder what it’s all about.

I do not like the fact that Dusk is not up front,even if her opinion is valid,sorry Dusk,but that’s just my opinion

Helen I have come on here mainly to say,I am so sorry…[Read more]

Hi Tom! Hope you’re doing well.
I’m curious: what’s an MRI diffusion scan? Never heard of one of them… 😉
Helen

Hi Ann,
I just wanted to say I’ll also be doing an SCT and I’m going with the idea that it is doable! I know someone recently who did it and said it was an anticlimax – that’s what I’m planning to have too!
It’s a lot to take on, and the Dex etc drives you mad (I’m also on dex currently) but before you know it, it’ll all be over and you’ll be…[Read more]

Hi all,

Just to add another story to the mix to remind us all again how individual (and unpredictable) it is. I was diagnosed stage 3, bone damage, kidney problems, hypercalcaemia, pneumonia, really very ill, just as I turned 33. I had 4 cycles of PAD, with a very rapid response: light chains in blood and urine both vanished to zero after just 1…[Read more]

PS and I forgot to say more generally, phone Maggie/Ellen at Myeloma UK who have the full picture on treatment etc – there will I’m sure be various good treatment options.