[eveParticipant]

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 you have relapsed ,I know we all do it slip bad news into some else,s post,we have this fear of upsetting people!!!!,
Velcade was good for Slim and he is now on it again!!! I hope you do well on it!.
I also agree, that no one person is in a position to know how a drug will effect them,you have to make choices with what is available at the time.

Slim has had the new programmed MRI scan that is available at the Royal Marsden,although not good news it just gave us peace of mind,as it was decided on a BMB plus the need for platelets and blood,that are local hospital could do no more for him,and we had a second opinion . My best wishes to you Helen R love Eve

[HelenRParticipant]

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 life’ for now, just with more hospital and lots of crazy Dex…

I didn’t really want to write much on here earlier on because I hadn’t really told many people in ‘the real world’ as it were, so I didn’t want to write it in public on the internet. But my friends and family know now etc so I guess it’s ok. Still, I don’t think I’ll write much on here as I don’t really feel like it this time, but I do read from time to time and keep up with how everyone is. I’m very glad Slim is getting new options at the Marsden – keep on fighting together Eve! I see Ian is also about to go back on treatment again – hi Maureen if you read this.

And I’m doing OK Eve – it was a huge blow to relapse but I found the waiting stage worse than I’m actually finding it now I’m on treatment.

I will definitely post news at some point about how I get on, when I finish my cycles and am ready for my SCT….

Helen

[HelenParticipant]

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 remission from the SCT.
Love Helen

[MothasParticipant]

@HelenR

Hi Helen, hope you’re doing ok. The SCT isn’t a walk in the park, but on a day by day basis it’s eminently doable and at your age I’m sure you’ll sale through.

MRI diffusion scans are a protocol or type of MRI that can spot disease development in a more accurate way. I’ve been having them at mount vernon in west london for a couple of years. They use it to track the bone damage and any development in disease. I’ve got one coming up on Monday as it happens.

http://www.myeloma.org.uk/news/pivotal-study-published-on-new-whole-body-imaging-technique-in-myeloma/

[blueant107Participant]

Hi
Sometimes its the fault, as with me, of the person who has the mm. I thought I had a hernia and was eating painkillers when I found out. We had run out so went to AE at my local hospital hoping for something stronger than paracetemol which werent working.
I had an xray and at 8pm. It was reviewed at 9am next morning by a specialist and they found a lesion on my left leg. By 10am I had been contacted and was returning to hospital where further tests and x rays were taken. They talked to me about the possibility of cancer and by 1pm I had had a bmb and went back to work.
Luckily (I think) my wife was visiting family in Austrailia so I had a few days to get my head round the whole thing.read up on the subject and got ready to tell my wife. Sometimes its harder for the spouse who watches from the outside I think and trys to look brave 7nfront of the person going thru it.
my hospitalnis Stepping Hill within a week I had been assessed made to feel part of it, had so much information and help from macmillan, the NHS and the local community nurses as well as my GP it was overwhelming in a good way.
I am about to xtart stem cell surgery and hoping to be well by wimbledon which is what I set myself when this journey began, I work as a chef at the championships, whether I go to work it or not this year is a different matter but want to be well by then.
I found if I needed a question answered there has always been someone to answer it who has more knowledge of the subject than me or google. My Consultant has always made sure I understand as much as I have wanted to know, the nurses have tried to keep the room light hearted and still business like. Now Im about to go to Christies to see s8meone who is a myeloma specialist.
my opinion is if your not getting what you need then ask everyone you have contact with. Its a t3am thing and as the patient you are involved. For me I have foccussed on whats in hand in the 3 weeks coming up. Currently I have found out about sct and all the stuff that goes with it. Recovery seems to be down to the individual, I find work sometimes is easier than being at home. I suffer with being unable to sit still for too long. I can now make a mean cupcake tho
first thing I said to the consultant was can I start treatment in jan as I had a lot of work on. He told me no, I must stop work immediately. So I did. Looking back the initial month of adjusting to the drugs and the whole thing sinking in I was in no state to do anything at all. I know ive gone off topic at times I apoligise for that.
hope you get the treatment you want and have great clinicians looking after you as I have. My hospital all over the news currently but you need to have faith in your team, if not ask for another team!

[Author]

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