Hi Laura my partner Geoff went in for his 2nd SCT on 14 September this year first two weeks fine in third week his platelets were not rising as they should he was given platelets and blood but still no rising our consultant noticed a condition called TTP he had to then be rushed to Bristol for plasma exchange Geoff unfortunately lost his fight too…[Read more]

Huge congratulations to you both xx

Hi vicki were you at EJU today around lunchtime as thought i saw you. Geoff is startkng cycle3 tomorrow he is in at 1o clock. Geoff pp has gone down to 9.3 after first cycle. Hope colin is doimg well x

Hi vicki glad it went better with the specialist nurse and that colin is starting treatment again x x think of you both often. Geoff goes to clinic next thursday not sure if we will get any results yet this is end of cycle 2 stay positve x

So sorry to read this Vicki I know what you mean about clinic too many new faces  I have got to like Dr shield nowperhaps you should ask to see Dr chown? I hope they sort this out fast today must have been frightening for you both its hard enough to stay positive without this kind of remarks. Stay positive you have my number call me if you feel…[Read more]

It’s a shame to read that some patients have suffered undue pain during Bone Marrow Biopsy. I was diagnosed in October 2011 and have since received three BMBs. The first at Weston General Hospital and the other two at the Avon Haematology Centre in Bristol. On each occasion I was given local anaesthetic with great care. I was told what was going…[Read more]

Hi Vicki not been on here for a while sorry to read your post hope it is just the virus Colin picked up on holiday. We saw Mr Shield last week I’m not sure I like him yet much prefer the others seems we get him every time! Geoff is a year in remission (touch wood) we went to the info day at Bournemouth at the weekend and you can go for a second…[Read more]

Charlie

Very good to hear from you. I trust that like me the Revlimid is not giving you any great problems. I get slight constipation and runny tummy but both are minor and easily managed.

I trust your SCT was not too arduous. My Paraprotein was slow to go down to the plateau of 5 so maybe you will see further change. Even so, if you’re f…[Read more]

Hello

I’m sorry to hear about your husband who, reading your other posts, has had a rough time. I believe you are in the right place on Myeloma UK who publish some excellent guidance and provide this forum where you can express yourself and perhaps get some reassurance.

Looking at your questions I think you remain uncertain about the benefit o…[Read more]

Hi Graham

It’s disappointing to hear of your experiences. The comment from TonyF will no doubt give you some hope.

I wonder whether your experience has been with just one specific consultant and if so, maybe a change would be appropriate.

Like many others on this forum I’ve been able to get blood results when I’ve asked. Whilst I was recei…[Read more]

Grey

It’s refreshing to hear your views on travel insurance. In another thread I had published the fact that my wife and I currently accept insurance without myeloma being covered. Despite indicating that “This suits us but might not be appropriate for others”, it resulted in a stern comment from one contributor that such a strategy was wrong…[Read more]

Hi Jeff

Last year I attended the Infoday at Cardiff. I was most surprised to hear about the varying standards that patients seem to encounter.

As I’ve mentioned elsewhere on the forum, I rate Bristol very highly. Yes things do occasionally go awry such as my notes not arriving in time for my Zometa treatment but the staff are apologetic and s…[Read more]

Many thanks for your comments everyone.

Having taken some time out from the forum, I’m reminded that I’m not alone with this disease. Holidays are certainly possible although insurance can be an issue. Companies that claim to be “cancer friendly” don’t seem to be when you contact them. When I was first diagnosed, the consultant agreed that I…[Read more]

Hi David

Firstly excellent news on your other post – keep well.

I’m surprised about your DVT. Revlimid is known to carry a risk of thrombosis and so aspirin or Clexane is commonly prescribed. I’ve been on Revlimid both during initial treatment and now on maintenance and, since I have a “sensitive” stomach, I opted for Clexane. I was originally…[Read more]

As suggested, I’ve been able to reset my password without problems. As discussed elsewhere, my profile was empty. Having replaced it I needed to edit it. On trying to edit, the text seemed to disappear completely!

Also note that the link provided for renewal of Myeloma Matters in the routine letter no longer works. Presume you don’t want it…[Read more]

Hi Scott

Just want to wish you good luck with the harvest.

regards

Jacquie & Geoff 🙂