Hi Dai,

On Friday my Platelets were 18 and my Neutrophils were 1.2 (from 0.9 on Tuesday) My Hb was 8 but this has never been better that 12. I see my Consultant on Tuesday so we will have to see what the next steps are.

Regards?.. Terry MG 🙂

Hi Di,

I am joining your club and having Bendamustine C1 on Tuesday along with Thalidomide plus Steroids (Dex?). I belong to the South East London trust that when into administration. The 3 hospitals involved are to be split up and taken over by other trusts or organisations. The real issues were PFI payments on 2 of the 3 hospitals. I chose…[Read more]

Hi Sarah & Henry,

I have had PN mixed up with spinal cord compression. It tends to be in the feet and hands. I had 6 reflexology sessions from the Mac Milan centre within the local hospital. This seemed to help me with my feet and the symptoms of PN reduced. I then paid for reflexology sessions of my own usually within the rest week of the…[Read more]

Hi Christine,

I have stopped taking co-codamol as the second cycle of Lenalidomide (Revlimid) seems to have reduced the pain in my ? tree trunk? Right Leg. I have 2 appointments at Guy?s & St Thomas?s on Friday 28th December were I think I will have Radio Therapy on the ? tree trunk?. I do not know what levels Chris has got to but Kings…[Read more]

Hi Gill,

I do not come on to the site too often. But I have thought about you and Stephen during the year as we never got to meet up even though you must only live a mile or 2 away. I tried to find your house on Google earth but was not certain that I was the correct house.

I was very sorry to hear that Stephen lost his battle in…[Read more]

Hi Christine

I have suffered and an suffering from PN but I tried not to take anything for it as I think that there is enough going through my body with the Chemo stuff as well. I kept a note each day what I was taking and what effects I was getting. Otherwise one day just merges into another. Thus I began to understand which days were better…[Read more]

Hi Mothas

How quick did you have the Zometa? The first time I did not feel too well but not as bad as you. The first time was infused over 20 minutes. I told the specialist nurse and they doubled the time to 40 to 45 minutes and after that everything was ok. Sometimes the top of my head hurt but I never had to take anything for it. I hope…[Read more]

Hi Di,

Keep me in the loop on this and let me know how you get on. I an awainting appointments to have Radio Theropy on my Right leg. I think it is so big that Rev cannot work on it alone.

Good luck…. Terry MG

Hi Everyone,

First of all thank you for your support. If Dai, Scott & Keith can keep me in the loop and they seem to be leading and I may be a follower! I did have DVT?s but I knew it was not that and since August I have had 5 ultra sounds on my right leg and one on the left when it started to show signs of doing the same thing. My local…[Read more]

Hi Andy,

Glad to hear that things are going in the right direction. I was interested in what others said about levels etc. My Igg was 70 when first diagnose in June 2010. It came down to 5.9 by September 2010. Doctors said they had never seen such a drop. However, because I also had spinal cord compression I was found to have DVT?s caused…[Read more]

Hi Gill,
I do not go on the forum too often, only when the newsletter comes around and then I try to catch up on things.

First of all my thoughts are with you and Kevin. I will not say sorry as I for one do not like people feeling sorry for me. I have been wandering how you both have been getting on as I tread my path of issues as you are not…[Read more]

Hi Wendy,

I had the red itching around the neck when I had my SCT in March 2011. This carried on until August when it disappeared as I relapsed. During this time Kings did all sorts of tests as thought it was connected with some blood I was given. In hindsight I just think it was the itching that I found out later that others had also had.…[Read more]

Hi Gill & Stephen,

I do like to hear good news and thanks for sharing it with us. I do not come to the site that often as I try carry on as normal although my live is anything but normal with MM. I did try and contact you through the links on this site as an ?off line? email which I think is part of the functionality. I fully understand the…[Read more]

Hi Eve,

I have Velcade once a week on a Tuesday for 4 weeks then a weeks rest before the start of the next cycle. On the Tuesday of the rest week is the consultant?s appointment. I have his at Sidcup South London. On week 1 of the cycle I also have Zemota. I am currently on cycle 4 week 3. Like Jet I regressed 2 months after my SCT when…[Read more]

Hi Di,

Sorry to hear about your news. I know how it must feel. I spent all my time learning to walk after spinal cord compression. I responded well to treatment (CDT) but did get DVT. This time last year was told I was in ?virtual? remission and then went through with a BMT in March / April. In May I was told I was in remission. In July…[Read more]

Hi Everyone,

I do not go onto our site very often. I attended the London Info Day soon after I was told I had relapsed within a few months of my SCT and before I started Velcade. The talk from Prof Gareth Morgan was very interesting to me and I could better understand while some therapies work for some people and not others. I spoke to him and…[Read more]

Hi Eve,

Thanks for the explanation of the TLA?s (Three Letter Abbreviations) ?.. At the two hospitals I attend they call it this procedure: Bone Marrow Assessment or Bone Marrow Aspiration. I hope Slims results are positive as we all know what it is like to have these BMA?s or B?s so we all want good news for our troubles. Hope it is good…[Read more]