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 accurate picture. The chap giving the second opinion and my consultant both agreed with us when we pointed out that the BMB only gives a snap shot of MM in one particular area of the body and that an MRT would be a more accurate indicator, so there we are. Unfortunately there are people like Slim who don’t excrete paraproteins so the BMB has to be done.
I’m the opposite to you as well, I have no kidney damage but some bone damage, I believe the bone damage is limited because my work was so physical, it involved lifting upto 6 tonnes of product a day by hand so before diagnosis I was physically very fit. I suppose because of the physical work I drank a lot anyway and so didn’t have any kidney damage. A lot to be said for having a physically hard job.
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 after climbing a flight of stairs and the chest pain everytime I yawn or sneeze so I know MM is still very much there but I’m still here and still functioning most of the time so that is good. Like we all have to, you learn to adapt and we are all generally hopeful I believe.
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 chemicals were you using. Being a food manufacturer I would guess that some of the cleaning agents used were very strong and that as part of any routine maintenance, cleaning of equipment was a neccesity. Did you use any cleaning agents such as Trichloroethylene or Methalethylketone for degreasing and cleaning machinery? I still wonder wether the location of the town rather than a specific workplace is more relevant.
Tony, The airfield at Dalby would have been protected by armed guards as a matter of course. Every airfield in the UK and overseas during the 80’s had armed guards because of the threat from the IRA. I still doubt there was an escape of radioactive material from the station as there would be a high incidence of other cancers and illnesses related to Radiation sickness.
Now Mathew Callaghan I believe is still influential in the town and he was good at stirring things up in the past when on the council, David Wilson Homes on Dalby Airfield, Protected status for Melton Mowbrat Pork Pies, perhaps he might do a bit of digging. Ignore his politics and see if he is interested.
Suggest you look at this link
http://www.bbc.com/news/uk-wales-27073711
dickb.
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 bad considering it is developed from Thalidomide which has been around for ages and virtually given away in the early 60’s.
As for Melton, keep digging, the more you find out, the more it seems there is something there. Perhaps we ought to start a ‘Lived in Melton” thread just to see how many have a connection to the place.
Richard
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 luck with the SCT
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 believe it is the one that fights coughs and colds in particular, hence the need to avoid infections as they can easily turn into Pneumonia.
The ratio of the Kappa figure against the Lambda figure is important because it gives an indication of the level of Myeloma you have, you need to speak to your consultant as to how the ratio works. Although I have had Urine tests, my consultant relies on blood analysis rather than urine as an indicator. Other figures you need to be aware of are the total number of white cells in the blood (leukocytes) heamoglobin and platelets. All 3 give a good overall indication of the level of MM.
As for the lesions, they are a side effect of the MM as a particular protein that attacks bone is over produced. I’m sure your Consultant has told you they can be treated. Anyway, the best thing is to read up but don’t believe all the scare stories on the internet, contact the MM nurses on this site and contribute. There are plenty of people who have gone through what you are goindg through and will offer personal knowledge. Chances are whatever you have, someone else has already had it.
Welcome to the club no one wants to join.
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 nuisance at night. My doctor said 1 tablet a day is like being homeopathic but that is all I need. As for Zometa, I haven’t had any since November.
Richard
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 others say, listen to your body.
Don’t waste time and energy on things you can’t do anymore, concentrate on what you can do, there are still loads of things people can do.
Personally I don’t believe in Bucket lists – too negative, too time consuming,too selfish. spend the time being with people you want to be with and want to be with you.
Don’t waste time chasing people, let those who want to contact you, not the other way round. You will find out who your real friends are.
Hope that’s something to get on with.
By the way I prefer to remain anonymous because I wonder wether Insurance co’s trawel through sites like this looking for a way of not paying out.
Hi Johno, not replied to this post but can thoroughly endorse everything Rebecca and Carol have said. I too counted the days down and set stage objectives during my stay in hospital. I was given a Gym bike in the room as well, I’m in Germany but I believe a number of UK hospitals do the same. They are very concerned about lack of exercise and believe exercise aids recovery. I was also given a lung exerciser because that apparently helps to reduce the risk of Pneumonia I believe. Like Rebecca, I treated it as a stay in jail. I referred to the nurses as Wardens, the Doctors were the senior Wardens and the caterers/cleaners as privileged prisoners. My solitary confinement was for just under 3 weeks so not so bad. Couldn’t get used to the Wardens checking on me several times a night and giving me more antibiotics/fluids/nutrition in the middle of the night.
Anyway, as everyone says it’s doable. All the best,
Richard
Morning Carol,
I actually started off with PAD but that overstressed the liver so much I had a further 2-3 weeks in hospital. They were worried about the MM so the decided to try low doses of Revlimid even though the liver enzymes were very high. This was abandoned after two weeks because of the concerns over the liver. Once that had settled they put me on Velcade. The Velcade only dropped the IgG from I believe 52 to 32. They belived the Velcade wouldn’t achieve anymore hence the SCT. I still would have gone for it because I am rapidly running out of options. There was talk at one time of putting me on a trial but that didn’t happen because they believed my German wasn’t good enough.
Morning Eve,
I don’t feel very fit at the moment, we’ve just moved house, and I’ve probably done a little too much, I have a return of shoulder pain for the last few days. My consultant will throw the book at me if she knew. As for our daughter, she’s seven with the attitude of a 16 year old. Don’t know what’s going to kill me first -MM or her!
Hi Eve, I don’t regret going through SCT, Slim may have called it character building in the past, it’s just that reading the research and knowing how long it takes to have any form of recovery afterwards makes a tandem SCT seem a bit costly in emotional terms. On top of that, the chances of a succesful tandem are minimal with IGG in the 20’s
I will take up your suggestion of contacting Jet. We are in a bit of a quandery, feels like Hobson’s choice, damned if you do damned if you don’t but hey ho, that’s life.
Sorry Maureen, I promise to start a new thread and not hijack yours again.
Richard
