Hi David,

Wendy has it right… NICE approve Revlimid as a treatment for relapsed patients after Velcade. Its use as a maintenance drug is dependent on local or national trials etc., not as a right. My SCT failed after only 10 months… I have often wondered what would have happened if I had been receiving a maintenance back up such as…[Read more]

Hi Jean,

I had a similar experience to Frank when I started CDT, with what I now know to be the start of PN (Peripheral Neuropathy) problems. My feet were worse than my hands and it wasn't until I was on Velcade that it became pretty bad… to the point where I had to have the dose lowered twice.

It may be that the Thalidomide dose might…[Read more]

Hi Ali,

Due to an infection from a badly fitted Hickman Line (it leaked anti-biotic under my skin) I ended up Neutropenic and my harvest had to be cancelled. They managed to replace my Hickman Line at the same time as taking the infected line out (after four days of being neutropenic) but It was too close to Xmas to start the harvest procedure…[Read more]

Hi Keith,

Regarding the meds for life, I have already broached that subject and the answer seems to be yes. Rev & Dex are therapies, not chemotherapies… therefore you take them until they stop working (median for those who suit the treatment is currently 30 months). I know that there is nothing official beyond Rev & Dex but there are trials…[Read more]

Hi Keith,

I am sorry that your suspicions have been confirmed.:-(

I wish you luck with the Rev & Dex… I am on Cycle 4 and so far so good.8-)

Enjoy your holiday… and then on with whatever it takes to last through to Carfilzomib and the other good looking treatments about to come online.:-)

Dai.

Hi Jen,

Bone lesions are very common amongst MM'ers… some more than others. By the time I was diagnosed with MM I had already had a vertebrae blasted away by radiotherapy due to it crumbling and pressing against my spinal cord. At diagnosis I had two tumours on my head but my frontline treatment CDT, soon go rid of them and now I have two…[Read more]

Hi Andy,

You are right, its not a big jump but it is going the right way and that's all the matters… it shows the medicines are winning and a couple more little jumps and you will be in the 'end zone'. When I was on Velcade I was told that the magic number was 18… 18 or below was the end zone… so at 35 you are not far off.

My Revlimid…[Read more]

Hi Liz,

How did Kev get on with his Velcade injection?

Although the actual infusion only took five seconds we were often in the daycase unit for a couple of hours. Firstly we had to play 'hunt the vein' for the cannula and then start the saline drip.. then we had to wait for the Velcade to come down from the pharmacy and after two nurses…[Read more]

Welcome home indeed Slim… just think back a year to all that nonsense you had to put up with and the sense of 'where is this all leading to'? Well its led you to here… a place where you find yourself totally rebooted with brand new stem cells building up your energy centre and offering a whole new slice of life.

It is going to take time……[Read more]

When I was finally diagnosed with MM I raised the Q of hereditary links and my consultant told me that there was no evidence of MM being hereditary.

I have noted an American article about a link between MM and MGUS in families but we are talking about small numbers. As someone has already pointed out… if MM is so rare then the chances of…[Read more]

Hi Antoinette,

Welcome to the forum, if not to its reason for existing. As you can see for yourself this is a very welcoming and supportive place to discuss your diagnosis and the treatments and procedures you will be following down the years.

According to the leading MM medics in the USA (where most new research, innovations and drugs…[Read more]

Hi Ann & Peter,

Myeloma 101 – Nutshells – I suggest you look for a more detailed explanation elsewhere on the main site.

There are two main types of Myeloma… Heavy Chain & Light Chain.

Heavy chain Myeloma is measured by Paraproteins.

Light Chain Myeloma (Officially Bence Jones Myeloma) is measured by Kappa Light Chains.

Light…[Read more]

Hi Liz & Kev,

My consultant thought I might get between 3 to 5 years from my SCT based on an excellent response to my frontline treatment but I relapsed after 10 months… so I can both sympathise and empathise with Kev… it knocked us both back and like Kev I had a quiet period of 2 to 3 weeks until my survival mode kicked in and I readied…[Read more]

As I understand it Pancytopenia is either a hereditary condition or one brought about by treatment, mainly chemotherapy or related treatments. I have had a serious blood problem since early childhood… my treatments and medicines have been varied and sometimes exotic and along with Leukemia, Sickle-Cell Anaemia, and Sideroblastic Anaemia,…[Read more]

Hi Eva and all,

I thought this article might be of relevance and interest.:-)

Dai.

[b]The Myeloma Beacon
May 29, 2012 10:12 am

Forum Highlight – Beacon readers have been discussing the hypothesis that cancer stem cells are the cause of multiple myeloma persistence and relapse. [/b]

[i][b]Day Of Rest Between Melphalan And Stem…[Read more]

Hi Deborah,

I have inadvertently given some wrong advice… I said:

?Velcade is a cousin of Thalidomide and like Thalidomide it can cause Peripheral Neuropathy (PN) although reports of Velcade via Subcut lessen this effect.'

Ellen from Myeloma Uk has put me right with:

[quote]This isn't strictly true and Thalidomide and Velcade are…[Read more]

Hi Deborah,

You say that your Mum had Thalidomide based chemotherapy a couple of years ago… I assume this was her frontline treatment? Most likely CDT (Cyclophosphamide – Dexamethasone – Thalidomide) or one of the variants. Did she then have a SCT (Stem Cell Transplant) or was she considered too old? (Normally not offered if over 70 or…[Read more]