Hi Maureen,
Sounds like Ian is on the same dose I was on. I started with Velcade in June and started having pain in my feet around August I think. It wasn’t until October it became really bad but virtually cleared up at Christmas. I finished with the Velcade end of October. As for the Dexy, I never managed a proper nights sleep. From August they introduced Cyclophosphomide as well. Unfortunately the SCT doesn’t seem to have worked for me – yet. I had my SCT on 15th January, My IGG was at 32 and has only dropped to 23, this figure has been confirmed after the last two blood tests. They want to do a tandem SCT but I’m not convinced so I am going for a second opinion. My current preference is for Revlimid but I did have raised liver enzymes after 1 course of PAD and they are concerned that will happen again. Anyway, as you say, treatments can give good remission without SCT. Good luck with the Velcade.
Hi Jeff,
My wife and I read the article and certainly gives cause for hope. If it does work then it will certainly help a lot of people. However I believe the article said the drug is being tsted on those with Leukemia and Lymphoma. I understand that trials in the US are being done for MM, but BTK is being used in conjunction with other drugs. Let’s hope it does work for MM and that we can hang on long enough.
Hi Jeff,
My calculation was just a simple dividing the number of affected people into the known figure for the population: 10 / 30,000 and 20,000/61,000,000.
Having grown up and lived in Melton, I know a bit about the large employers in the town and I don’t believe there is any that has a bad reputation for health and safety or would put the welfare of its employees or the town at risk. The fact you all work for the same company is coincidence but other factors have to be considered. Perhaps you ought to approach Leicester University and see if they are prepared to do some research into it, might make an interesting thesis for anyone doing a doctorate.
Hi Jeff,
My calculation was just a simple dividing the number of affected people into the known figure for the population: 10 / 30,000 and 20,000/61,000,000.
Having grown up and lived in Melton, I know a bit about the large employers in the town and I don’t believe there is any that has a bad reputation for health and safety or would put the welfare of its employees or the town at risk. The fact you all work for the same company is coincidence but other factors have to be considered. Perhaps you ought to approach Leicester University and see if they are prepared to do some research into it, mike make an interesting thesis for anyone doing a doctorate.
Hi Izzie,
If you look at my thread – ‘Buddies wanted’ there is a lot of posts by me, Ang and Carol about what we went through from Stem cell harvest to post SCT. We all had different experiences so it should give you an idea what to expect. As for the Neuropathy, I had the same throughout the harcest in early December- very painful at night, poor sleep because of it, had to keep moving to get the blood circulating during the day etc. However, over Christmas it subsided dramatically. All I get now is just a sharp pain once in a while on my left instep and right big toe. It is a nuisance rather than life affecting side effect now.
I think it is also fair to say that Carol and I have had different results from the STC. Whilst Carol is effectively in full remission with normal light chains and no trace of paraproteins. The STC hardly touched mine. My Igg protein has dropped from 32 to 23 and has remaninned at that level for the last two blood tests, that’s over a 4 week period. So be aware it is not guaranteed but I believe it is still worth doing as it seems to work for a lot of people.
Morning,
Did some basic maths based on the figures I gave in my last post. If I still remember how to use a calculator than the chances of having MM in Melton is an incidence of 0.00033, for the population in general it is 0.000328. That’s not really a big difference. By the way I did badly at maths at the Upper School – like a lot of us there at the time.
Hi Jeff,
I had a good reason to ask as I went to the upper school and lived in and around Melton for 14 out of 23 years before moving to Leicester, So that makes 10 of us with a link to Melton. As they’re are supposed to be about 3,500 new cases a year and possibly 20,000 sufferers in the country at any one time than the ratio in a town the size of Melton compared to an overall population of 61,000,000 makes interesting reading. There other factors to consider than just place of work. These include the fact that Radon may be prevelent in Melton – this has to be checked. If you have lived in the same house for a long time then maybe you ought to have it checked for Radon. The other thing is that Dalby Airfield use to be a Thor ICBM base in the early sixties. Conspiracy theorists will have a field day with that one but I stress there is no proof or data I know of saying there was a nuclear accident or the land is contaminated.
Now, as you say the other 8 work in the maintenance department of the company, is it a company based on Mill Street?
As for Germany, Myeloma is seen as a job related illness by the German occupational health agency but I undersatnd in the UK the criteria is far more restricted with things like Asbestosis and White finger being seen as a job related illness. So proving that you contracted MM from your employment may not actually do you any good.
Hi Jeff,
You don’t happen to live in Melton do you?
Hi Carol,
The DWP website says that expats can claim so long as they have contributed to the system, eg NI payments. As I have worked for 32 years I believe I have contributed enough. If they ask me to attend an assessment that could get interesting as my medics say I must not travel.
Sarah,
One of the things that cropped up in my wife’s research was that cancer patients are treated better than other claiments because they are known to be more vocal and have better support so perhaps that is why some have an easier time than others.
My doctors, being German may need help with the form filling even though their command of English is superb and some things may get lost in translation. They are an excellent team and from what we can gather of a far higher standard than a number of assessment medics used by ATOS.
This action will be more of a last resort for us because our stress levels are pretty high at the moment and we don’t want to compromise any assistance we may get in Germany but unfortunately it does have to be considered.
Hi Eve, think you have the same finger trouble as Maureen, surely you meant ‘take the dog down to the beach’ Certain you can remember what the dog is as well.
Hi Ang,
I believe it was at the 4 week stage that I started to feel nauseaus and had 6 days of diarrhea and vomiting. I was also very tired. Things are definately improving, I have a bit more energy and feel able to do a lot more. Climbing stairs tires me out. We are moving house this month and I find if I pace myself, I can still pack boxes, move things over to the new place and general tidy and clean. I do need a rest sometime during most days though. So on that basis maybe Graham’s just going through part of the natural recovery stage. Bad news about Graham’s job, as Carol says Graham needs to check the regulations, is he in a Union? Anyway, it looks like Carol’s the leading light having done really well with the blood results, perhaps it’s a bit of inbuilt Aussie strength, something a lot of us need now I think.
Well done Carol, I have to wait until the 13th for my next blood test, so far results haven’t been as good as the medics would have liked but we have so much to get on with to worry about them. Let’s hope your BMB confirms the good results.
I think too many take the NHS for granted and have too high a level of expectation from it. It was always meant to be health care free at source but so many forget it has to be paid for somehow. As some on this site have bemoaned NICE and the restriction on available drugs, your post Kim should help remind them that things elsewhere are not always better and just how lucky they are not to be in the US or other countries that have purely an insurance based health system.
As I’ve said before about the system in Germany, the care is fantastic, the administration seems to be very poor, my wife has to pay a health care premium out of her wages for the family and if she wasn’t working, I’d be stuffed. So those NHS doubters perhaps ought to join one of us out of the UK and then they might start to realise just what a great service they are receiving without additional cost.
What dosage of Dex are you having?
Hi Maureen,
I believe MRI scanners are hideously expensive to buy and run, MRT are even more. With hospitals in Germany being commercial businesses they tend to buy them because they know they will make a return, although not every hospital has them. I believe it would help you and Iain understand the extent of his MM, I had an MRT in November prior to Stemcell Harvest, the doctors used the scan to check everything from bone damage to condition of organs, I was also given a disc with the full scan on it, can’t tell you what it means but I certainly know what I look like inside.
as for me post SCT, just getting over 6 days of Diarrhea/ vomiting. The Doc says it’s either something I picked up from our daughter, something I ate or down to the damage done to the stomach by the Mephalan. Although my daughter’s put my immunity system to the test with coughs, colds and Slap Cheek Syndrome, I believe it is the Mephalan, back on the up now.
Anyway, now you’ve had a bit of time away, you need to plan the next, something for Iain to aim for.
