Hi Keith, Bone pain during GCSF injections I have always considered a very good sign that you will get a harvest, so I hope all went well.

I had my SCT in Nov/Dec 2009, aged 66. I was told at the time I would only have one SCT because of my age. Never got to remission after it but a low plateau of 2.9 pp.

5 years later I am on Rivilimide,…[Read more]

I was only on Velcade for a couple of months, I got PN quite badly and was pulled off so cannot really add anything constructive. I would tend to agree with Tom. However, why not mention Rivilimide to your Consultant, I understand it is the third line treatment, I am on it, and you have to have relapsed on Velcade I think but it is worth a…[Read more]

Carol, she is not adorable she is absolutely gorgeous.

We never did get to Australia and New Zealand. We do not have relatives out there so although we would liked to have gone there was never a great urge to visit.

We are planning a small trip to Greece this year if things remain stable, we just want to sit in the sun (well shade for me) at…[Read more]

Helen

That’s great blood results and glad to hear you are getting away on holiday. Have a great time and be frugal as you have a wedding to pay for, lol x

Vicki and Colin x

Carol that’s great brilliant news, well done you

Vicki and Colin x

Hi jean and frank,

Hope the consultant visit went ok today and franks continuing to improve with the shingles. Colin told me it was very painful when he had it! Calomine lotion is meant to be good for it too.

We are going to mauritius next week for two weeks. Weird considering we haven’t been anywhere and now we are going long haul. Lord knows…[Read more]

Hi Andy and steph,

Glad to hear you’re getting the chance to travel, even with the hospital interruptions! I didn’t mean to sound like I was saying we need to lighten up….it’s a v serious subject! It’s just that sometimes it scary and we all need someone to throw a lifeline in here and there 🙂

Glad you got to the pub for tea and some beer.…[Read more]

Hi Alison

Lovely to hear from you how is your mum doing? We aren’t on face book! We need to get with the programme as they say! Yes we have finally bitten the bullet we are going to mauritius for 2 weeks! Really looking forward to it, I got told off last night for being paranoid as I want to take the thermometer with us! I have managed to get…[Read more]

Hi Carole

Just wanted to wish you all the best and that you are on the mend a bit. Fatigue has always been a problem for Colin. Hope you throat is feeling better. That was a real problem for Colin too x

Every day is a day closer to full health

Best of luck

Vicki and Colin x

Hi all

I’ve caught up with this thread and there seems to have been a lot of high feeling at the start. Treatment and choices is always something that will need to be made by nhs and of course what we make as part of the journey. In our circumstances I’d like every penny to be spent of treatment and cure for myeloma, and find it now. However…[Read more]

Hi there,

My partner Colin had sct in November 2011. What happened in the less up to sct, you are given a growth injection called gcsf (you can either administer yourself or nurse can come in to do it). It was about 4 days worth. We the. Had to go down to the aphoresis unit in Bristol and you are put on a machine which separates your blood- for…[Read more]

Hi jean and frank,

So sorry to hear that frank has been going through the mill. The shingles sounds awful. That is one thing that Colin dreads. I have been told the pain is really horrible. Sometimes it does feel like its one thing after another doesn’t it. What about putting calamine lotion on it? Would that help?

Hope frank is on the mend a…[Read more]

Megan

I’ve just noticed your post that Phil’s numbers are going up again, so sorry to hear that. Glad to hear that the counselling has helped you. I do understand what you mean about living for the day. It is so hard not to what if though isn’t it!

All the best with the next steps

Vicki and Colin x

Hi all

I’ve read these posts and just want to stress how important it is to share your worries and conerns if you feel you can. It’s a long hard road to be lonely as well as battling this damn condition. So share your highs and lows with us. We are all in it together in one way or another so let’s all help each other. This forum has been a…[Read more]

Hi there

I would say that our treatment has been amazing with the nhs, from the consultants to Dave who brought the food and drinks trolley round. They all give 100% . Colin had private medical insurance and when Colin had back pain we went private for the MRI scan. The consultant told us it was nothing sinister, nothing that physio wouldn’t…[Read more]

My Doctor actually suggested Rivaroxaban to me as an alternative but it was vetoed by the Consultant. The consultant said that it was to do with internal bleeding. If you had an internal bleed Clexane could be treated easily but Rivaroxsaban could not.

hope this helps

Kindest regards – vasbyte

David.

Hello Luciano and Chris,

Sorry to hear of your condition. When Colin was diagnosed in 2011 it was like we’d been hit by a train. We couldn’t believe what we were hearing and then frightened about it. Colin went from being a healthy ski-ing, golfing, kayaking individual and actually very annoyingly good sportsman to having a condition that…[Read more]

Well Mauritius has a nice Hospital in the centre of the Island, or they did in 1997 when we went there, if you need it.

Are you sure you are covered and Myeloma is INCLUDED not excluded?

Have a great trip.

kindest regards – vasbyte

David

Hi joe

Just wanting to wish you all the best. My partner Colin was diagnosed age 56 in 2011. It was a real bolt out of the blue! He has had the sct in November 2012 and is in complete remission, we were absolutely scared out of our minds but the medical teams are wonderful and really look after you. On e the sct gets started there’s no where to…[Read more]