Hi Jeff,

hope the news is good with the Revlimid. Don’t know enough about it to offer true optimism but my medics believe in it.

Hi, interesting point michellew, suggest you look at these sites:
http://www.cancerresearchuk.org/cancer-info/cancerstats/keyfacts/myeloma/
http://publications.cancerresearchuk.org/downloads/Product/CS_KF_MYELOMA.pdf
http://www.cancerresearchuk.org/cancer-info/cancerstats/types/myeloma/.

Suggest that these figures show that it is uncommen…[Read more]

Hi Ang,

Doing Ok. had a 2nd opinion a couple of weeks ago because my SCT had not been particularly succesful the medics wanted to do another. – My IgG had only dropped to 23, they were 36 I believe before the SCT so the difference was minimal. Since the SCT I’ve had 3 blood tests and they have shown IgG stable at 23 so the agreed route is no…[Read more]

Hi Ang,

hope the run goes well. ironic isn’t it that such an awful illness could infact help improve the fitness and health of others 🙂

Hope the BMB goes well, what have his blood tests shown since Graham came out?

Hi Maureen,

At least you know what to expect from the Velcade, as for me, my consultant tends to stick with the blood figures and so I don’t get to know what my light chains are doing. Maybe I’m just a bit weird where the FLC don’t give a good enough indication of MM.

Good news about the Velcade. Any sign of Neuropathy yet?

People come, people go, the good thing is that their knowledge is normally past to other team members and with their knowledge and experience, research and innovation continues to carry on. There is always a feeling of something lost, a vacuum, when a highly prized team member moves on but that can often lead to an even more capable person taking…[Read more]

Hi Rebecca,

I believe that a steep drop at the start of Velcade followed buy a flattening out of the curve is normal. As for the hair, I have a simiar thing, I was before chemo blonde/light brown depending on sun bleaching. I still can’t work out what colour I’m going to end up. My stubble gives me a black moustache and blonde beard.

Hi Rebecca,

I haven’t had a BMB. Here in Germany they want to do it at 4 weeks post SCT, I said no and pointed out that in the UK it is done at 100 days. My consultant said that in the UK they do it properly! So it has been delayed. I still haven’t one because my blood indicators are preferred by my consultant as she believes they give a more…[Read more]

Hi Rebecca,

Interesting that your consultant hasn’t told you your IgG figure. Are you MM type IgG- Kappa? It may be that you may be type IgA for example or don’t secreet proteins and so they base their staging on the light chains. Watching and waiting is along the lines of no news is good news. I still have the bone pain, the breathlessness…[Read more]

Hi Jeff,

I still wonder wether the fact that a number of you worked in the same department of the factory is just coincidence. My reason being that in the 60’s and 70’s that company was a major employer in the town if not the biggest. Now if it were the common link, the next question would be what processes where you involved in and what…[Read more]

Suggest you look at this link
http://www.bbc.com/news/uk-wales-27073711

Hi Tony, just out of interest, how old would you say the other patients were? Both Jeff and I are of working age and with Jeff having worked with 8 others in the same factory, it does strike me that in Melton it isn’t an old people’s illness as it’s generally supposed to be. Where are Holmes and Watson when you need them?

Hi Jeff.

We were looking at Revlimid as a new treatment for me as the SCT didn’t seem to be too succesful. What we found out is that it is believed to be very effective when used with dexy and has very few long term effects such as secondary cancers. It is very very expensive, In Germany the cost I believe is 7000 euros for 1 months course, not…[Read more]

Hi Karen,

Glad I could be of some help, even if it is in a small way. Like everything its about attitude I suppose. I also have a fantastic wife that helps me and like you I do feel guilty about things but I have learnt that doesn’t help.

Richard

You will probably find the Neuropathy will dissipate, I had it really badly in my feet from October until Christmas and then it seemed to go almost overnight. I get a little twinge now and then, especially if I sit cross legged.

I actually found the opposite to Helen was best. Keep moving and keep the circulation going. We are all different. Good…[Read more]

Morning Stanley,

I’m afraid you’re going to be on a very steep learning curve about MM as we all were. on the figures you’ve shown, the important ones are the IgG and Kappa. Both give an indication of the level of MM you have and the IgG shows the type. This is an Immunoglobulin, a type of anti body that fights infection. I am not sure but I…[Read more]

Hi Carol,

I have 5 drugs to take – Contrim forte – anti biotic 3 x week, Aciclec 400 – anti viral daily, Pantoprozol – I believe to prevent gastro problems, daily, Folverlan 5mg a follic acid supplement daily. I take Nuvoinsulfon pain killers but that is 1 tablet, 500mg before bed. I have very little bone pain during the day but it is a bit of a…[Read more]

Hints and tips. I think the following works for us.

Forget career and materialistic stuff, focus on the truly valuable, for me that’s family and friends.

Don’t let it rule your life, think of the dog wagging its tail, not tail wagging the dog.
Plan. What you want to do, what you need to do.

Accept you will need lots of rest, don’t fight it, as…[Read more]