Thank you Mari.

II suppose I am used to seeing it bustling and busy but now it was 5:30pm and the Haematology Day Case Unit was eerily quiet. I was sitting in the waiting area near to the main entrance, waiting for Janet to pick me up, when someone came out of the lift. It was my consultant, head down looking lost in her thoughts. She looked…[Read more]

Hi All,

I was determined to start Cycle 6 with a positive outlook and with a healthy approach and a new regime of getting out into the fresh air and getting out generally.

Monday was good,:-) Tuesday was better… 😀 but I spent this morning monitoring my temperature because I woke with a temperature of 38.3 and a rumbling, grumbling…[Read more]

Good luck with the radiotherapy Andy. I had extensive radiotherapy to blast away a couple of vertebrae that had crumbled onto my spinal cord… which was successful and got me walking again.8-)

A year later I had one single shot on my left shoulder which was painless and effective. I have to see an oncologist next Tuesday to consider a blast…[Read more]

What a relief for you both Mari!

It may mean a few extra days and a bit of moving about but it will be worth it when Steve's stem cell count reaches 2m. 🙂 😎

Dai.

Hi Mari & Ali,

Plerixafor is very expensive (not sure now but I was told once and if I recall correctly more expensive than gold).:-D

The harvest machine does a series of cycles and then stops to store what it has collected… so the more days on the machine, the more bags you have. Each bag contains your collected stem cells plus a…[Read more]

Much joy Liz & Kev,

I have a fifteen year old Grandson and I love him very much but I did not see as much of him growing up as I would have wished due to distances involved, although now we are only 20 or so miles away and we have grown much closer.:-)

But our other two (6 & 4) are almost on our doorstep and we can see them as often as we…[Read more]

Hi Mari,

My initial harvest was cancelled when my Hickman Line leaked, giving me an infection, a week of being neutropenic and finally a replacement line… by which time all of the prep for my harvest, including my CSF injections and the chemoblast were null and void because I had 'missed the window'.

That was 3 weeks before Xmas… so they…[Read more]

Hi Keith,

I am glad that your news is relatively good… and that your team seem to be sorting out your Dex intake.

I asked my consultant today about my Dex intake (20x2mg once weekly) and she said she would like to keep it at that for the present until we see some definite movement downwards with my light chains. That agreed I…[Read more]

I can only wish you the best of luck Tom… I am sure you have exactly the sort of personality they want on the show… it would be great to see you… and even better if you won some big money.8-)

Will Elaine be on the front row to guide you I wonder.:-) 😀

Dai.

Glad to see that while you are going through the normal low points that they are running smoothly. Twelve days in? That's gone quick. In which case I'm predicting 0.1 for Tuesday am. Either way you must be getting near and then it will be home for recovery.

Keep up the good work, rather than going through the mill you have had the run of…[Read more]

Good work Keith… At least you know the plan and it does seem to be having a good effect.

I have my consult next Monday too… all I want is the okay to carry on – to Cycle 6. my ought chain reading should be back but I am not too concerned… I don't suppose it will have dropped too much but my body tells me that it hasn't't risen much if…[Read more]

The trouble is that while throwing large doses of Dex at the cancer can have magic results, it is a high risk strategy regarding side-effects.

The worst side-effect of Dex is not the range of beauties that we can see and feel but the silent one… the one that allows, protects and disguises infections. Infections appear, develop and grow…[Read more]

Okay, I'll be your Huckleberry.:-D

One of my all time favourites.

Dai.

The Mother Superior was waiting at the nearest railway station for her newest novice to arrive from London. The convent car was an ancient Ford with a large rounded bonnet but it looked good and worked fine and she had thoroughly enjoyed the twelve mile scenic drive…[Read more]

Hi Jen,

Re: Can he continue with the treatment the answer is yes, yes, yes. As long as it is not too unbearably painful or causes the inability to use his hands then they can reduce the dose which should ease the symptoms… but don't discontinue lightly. 🙁

Your Dad will need Velcade later on down the road and if he has abandoned it at…[Read more]

Hi Keith,

I've been on 40mg once a week from the start… the same dose as on CDT & Velcade. 🙂

I have a DexDay TM on Tuesdays, where I basically veg out with a book, Kindle, iPad and TV… with several changes of tops due to the excessive sweating (though I have to report that the ever observant Janet has noted that Cycle 4 had four…[Read more]

Hi Helen,

I typed hi ho into the search myeloma uk box and I found all the replies but they appear individually with no clue to where they are collected. sorry.

Dai.

Hi Eve,

I am taking great care… I'm due to be at a surprise 50th Birthday party for my youngest brother in Swindon on Saturday but at the moment it is not looking likely. I had planned to go, I want to go and I will make my final decision on Saturday am. My daughter and partner are due to travel with us but she has her car and satnav ready…[Read more]

Hi Pennie,

The median for Rev & Dex is currently 30 months (2.5 years) possibly more (plenty of examples) but possibly less.

My advice would be to take the Carers Allowance for yourself, Attendance Allowance for Andy, housing benefit if needed, and all and any other benefits due to you. It may not buy you all you are used to but it will buy…[Read more]

Hi Suea,

I will echo all that Keith has said, demand a second opinion, it it yours by right and ask for the pomalidomide. I have had 3 plasmacytomas that were sorted by the treatments, so pomalidomide or even Bendamustine might help there.:-)

The very best of luck in such trying times, I wish you naught but well.:-)

Dai.