Hi Helen.
I hope my back holds out too.
You seem to have the rest of the year all sorted for trips away. We’ve not got anything organised till September. Which will be another week in Greece if everything goes to plan.
Steph has cut her hours down and now works a 4 day week.
Oh I went to the opticians the other day and got told I’ve a cataract…[Read more]

Hi Richard.
Seems MichelleW is pushing the myelomacrowd quite a lot. Seems to be an American site.
I’ve not read much on there so can’t comment on its content though it’ll inevitably be more skewed to the American health care system if it is an American site. Guess I’ve got some reading to do 😉 hopefully it’ll be another valuable…[Read more]

Hi Maureen
I was pulled off Velcade after 2 cycles, I was on PAD, as it was deemed not to be working I think it’s the NICE guidelines at the time. Though they may of changed since I was on it.
I had DTPace after PAD and that didn’t work for me either as you know I’ve not had much luck with the different treatment tut. I then went on to Revilimid…[Read more]

Great news David.
Let’s hope the good news keeps rolling in for you.
I got my latest PPs result yesterday and they’re down to 11.25 not a very low reading but for me a great result. That’s the lowest they’ve been since diagnosis! Guess the new treatment must be working a bit 😉 long may it continue.

Every day is a gift

Andy

Hi David
I’m planning on keeping on flying to Greece as long as I can David. I thought the latest trip there might of been the last after the bad start to the year I had but I’m feeling ok again now and we’ve already booked for our September trip. Steph has cut her hours to a 4 day week so we may get a few more trips away in the British Isles too.…[Read more]

Hi Helen
There’s nothing planned for my back at the moment. We got warned about spinal cord compression and the need for speed of treatment if I get symptoms of it.
My last MRI showed some more damage to a couple of vertebrae including one I had kyphoplasty on. The radiotherapy I had earlier in the year has relieved the pain I was getting.
The…[Read more]

Hi Helen.
Yeah we’re back from our trip to Greece. Had a good time the weather wasn’t fantastic but it was good enough and not too hot! Already booked for a trip back in September as long as I stay healthy.
I had an appointment at maxo facial before we went and it was confirmed I have osteonacrosis of the jaw. Though all was deemed necessary was…[Read more]

Hi Maureen
Steph and I are going to the Newcastle, it’s in Gateshead really, info day on June 7th. It our second time and we found the first very informative.

Every days a gift.

Andy xx

Kalimera Helen.
Sat in the Greek sunshine.
Just read your post and I can totally understand your dilemma about having a transplant. I tried putting myself in your shoes and I couldn’t come to a completely satisfactory conclusion as to the drugs versus transplant argument. I know when I was told I couldn’t have an Allo I was gutted but that was…[Read more]

Oh crap! Half of my post has disappeared! First I can’t get signed in now this!!

Anyway Helen you probably know more about your options than anybody else on this forum though I do suppose that could be a curse rather than a blessing at times.
My latest news is last weekend was my nieces sons birthday so we had a little party. Wednesday I got a…[Read more]

Hi Helen.
I’ve got to say that your consultation sounded very much like the one we had with the prof. almost 2 years ago. He did scare us a bit and was pushing us towards an Allo since my bone marrow was to battered to be considered for an auto. Though in my case a match for an Allo couldn’t be found.
I had 22 cycles of Revlimid and though it…[Read more]

Hi Sal
I’ve had DTPace. I was stuck in hospital for the 4 days with all the infusions going on 24/7 You don’t get much sleep with the alarms going off all the time! And going to the loo is an experience and requires a lot of dexterity. Don’t know his you’d manage if you were in a rush!
I only had one cycle as it was deemed not to have worked. I…[Read more]

Hi Helen
Sorry to hear that you’ve relapsed. You really have had a hard past few years.
Speaking as someone who doesn’t know what it’s like not endure the round after round of treatment, except brief spells when I was to ill for the treatment, I get really jealous of those who go into remission. As you know I’ve been through the myeloma handbook…[Read more]

Hi Eve
Hope Slim is doing ok now. You must be worn out.

Andy xx

Hi Vicki
The collapsed vertebrae was written in my discharge notes. When I reread the notes the doc was comparing my new X-ray to one taken in 2011! So I don’t think that was new or the cause of my pain. It was more likely a side effect of my radiotherapy. Oh welcome back 😉 glad you had a good holiday.

Hi Helen
Welcome back from your holiday…[Read more]

Hi Helen.
We’re staying in Bowness. It’s a bit blowy here at the moment and it’s due to rain heavily in the next couple of hours! It’s supposed to be dry tomorrow just in time for our journey home.
Grooms woman? that’s a new one. Hope you have a good day. Didn’t they consult you when they arranged the wedding date lol.

Every day is a gift.

Andy xxx

Hi Eve.
Not had any feed back yet about Pomalidomide. I suppose my next pp test will give an indication.
I feel ok but the proof will be in the blood tests.

Hi Maureen.
I’m just packing all my drugs for the trip to the lakes tomorrow. We won’t get there till just after lunch tomorrow. So I suppose a drink tomorrow night is possible if that’s ok…[Read more]