Hi Rosie,
I don’t come on the site too often at the moment and it was my wife that told me about your post. I’m really sorry about your loss and that you have a young family. I am sure there will be help and support for you and I think we all tend to find a way of managing / coping even though it is painful. Anyway, our thoughts are with you, please let us know how you are coping.
Richard
Hi there,
I did and still do suffer breathing difficulties but mainly when climbing stairs. I can ride my bike or carry out moderate exercise without too much trouble but the momenmt I need to physically use my legs, I am out of breath. With me initially it was because I had pneumonia and I still have some lung damage but if I remember rightly, MM affects your Heamoglobin count and it’s the red blood cells that carry oxygen around the body. So if you are aneamic than perhaps that could be the course of breathlessness.
Or rather, being cynical, the big chemical companies will lobby hard to prevent anything that may question the safety of their products. For example, how many years after the Manchester Woolworths fire was legislation brought in to control the type of foam used in furniture. Or how many years was it after smoking and cancer was linked before legislation limiting sales and advertising was introduced or closer to home, the use of thalidomide, first used in 1957 but it wasn’t until the early 60’s that it’s use was restricted despite evidence being there of its affects on unborn babies.
Like I say, maybe I’m just being cynical.
Hi there,
For most people I would say diagnosis happens pretty quickly after a bone breakage. I believe the X rays will show that the damage is caused by bone weakening such as osteoporosis rather than stress or shock such as falling or something heavy impacting against the bone. Another key form of diagnosis is through illness and the body’s inability to fight infection. This happened to me, within a week I went from having a cough to full blown pneumonia, I also had a history over the previous two years of poor recovery from everyday infections.
The Blood test, BMB and MRI are really used to confirm MM and for staging level 1, 2 or 3. In the blood tests, my medics regularly check levels of Heamoglobin, Leukocytes, Platelates and Immunoglobulin. They will also check other things such as light chains and specific white cells. This will give them an indication of how the MM is progressing. The BMB gives a snap shot of how much MM is in the Bone Marrow. My concern is that it only gives a snap shot in only one area, i.e. where the BMB has taken place. As MM can be in different parts of the body it may give an inaccurate indication of how bad the MM is, e.g. If MM is prevelent in the Thema or the Shoulders and not in the Hips then it will give a false indication of the overall level of MM in the body. The MRI or MRT is probably the most accurate indicator as it scans the whole body and will show all the areas affected by MM. I attended a presentation last year in Germany and the gist was that with MRT, they can identify clusters of MM cells around the body including in the smaller bones such as forarms and chins. Scary considering that in the past, it was believed that MM only occured in the larger bones such as Hips, Them, Shoulders and Spine.
Hi there,
Can’t share experiences on the trial because I live in Germany and the medical system here is different although the treatment seems to be the same. What I will say is that your situation is similar to ours in that my daughter was 5 when I was diagnosed. We didn’t know what to say to her because of her age – just what do you tell a 5 year old? We decided the best thing was to tell her on a need to know basis and in very simple terms. Things like I was going into hospital to have some medicine and I was seeing the doctor to help make me better. We did find last year a book published by MM UK that explained about the illness to young children. We got it and read it with our daughter. She wasn’t upset by it, just fascinated and for a few weeks afterwards kept repeating bits out of the book. Now we don’t tell her when I’m having my blood tests or Zometa, I’m just going into town.
It’s now 10 months since my SCT and that wasn’t particularly succesful in that my IgG level dropped from 36 to 24. I am classed as stable only and am being monitored monthly. I feel perfectly well within myself, we do a bit of fitness workout, walk in the Forest behind the town and also have walking / active breaks. We know it will come back but we will worry about that when it happens. Incidentally, here in Germany they arrange a few weeks in a rehabilitation clinic after SCT. What I found most useful was the sport and physical activity. It wasn’t half marathons or weight lifting but regular sport has helped me to cut out the painkillers and is promoted as active treatment for MM. So, even if your not particularly sporting it might be something worth considering.
Hi Tom,
Sorry to hear it’s been confirmed but with a bit of Positive Mental Attitude there’s no reason why can’t achieve a second remission and for a long time.
Hi Tom,
With my last post i forgot to mention that in April I had an increase in pain in my shoulders exactly where it was before. Like you I thought it was on the increase and informed the mediccs. They arranged an MRT and it showed no worsening at all since the last one November last year. Every blood test since then has come back with the same reading of IgG at around 24. Every other indicator is ok so they have classed me as stable and I’m not having any active treatment for the MM, just Zometa for the bones. So, as I said before, wait for the results from the consultant and don’t jump to conclusions.
Tom,
Our fears always play on our minds and we always think of the worse. Wait until confirmation one way or the other from your medics. There might be a small chance that it’s unrelated.
Done
Hi there, just read your post and I think you can still be optimistic about your future. Like you I had my SCT, prior to it my IgG had fallen from 52 to 36. I fortunately live in Germany and unlike the UK, they still did the SCT despite my proteins being way above acceptable levels in the UK. Post SCT my IgG had fallen to 24. Since February, they have been stable at about that level. I don’t know about Myeloma in my Bone Marrow because I refused to have a BMB when they wanted to do it – here in Germany it’s at 4 weeks post SCT. To me it was a pointless exercise and couldn’t tell them anything more than they already knew. The medics also wanted to do a tandem SCT and again I refused, my reason was that the first one hadn’t work so why should the second. I went for a second opinion and the consultant – one of the top 3 MM specialists in Germany agreed with my conclusion and so agreed the best thing was to do nothing.
So, here I am, I don’t have maintenance. I only take anti bacterial and anti virral drugs. I go for a monthly blood test and Zometa infusion and that’s it. Like you, we were devestated when the results came back showing such a poor response to SCT but now, I feel good, I look healthy, I don’t take any painkillers and I don’t feel that anything is wrong. The MM is still there of course and will make a comeback but I don’t worry about it now and just concentrate on having some sort of normality. Not everyone has a full remission and not having one is definately not the end of the world. There are plenty who have only a partial and live for a fair amount of time after, for example, the Lady who runs the support group here has a IgG of around 26. Her SCT was at least 11 years ago. So, time for you to crack on and show the MM who is in charge.
Hi eve,
I hope Tuesday went as you planned, I am sure you gave Slim a good send off and now, as you say, you have a new journey to make alone. However, that doesn’t mean to say that you will be without us all on this site. Theoretically, you have no reason to be here but you have become a Myeloma Oracle and your knowledge can help so many. I would also guess that there are many of us here who would like to know how you are getting on. Who knows, in our own way we could help you in the future.
Please stay in touch.
Richard
Hi Carol,
Although selling a house / flat is inconvenient, it is not hard to do from overseas. I sold a house last year, my solicitor was fine, everything was done over the internet and any important documents were signed and scanned before posting. I believe for most things except the final contract, a scanned copy is acceptable. My solicitor did release the money even though he tells me he shouldn’t have done on receiving the scanned contract.
Er, Andy, can you switch the predictive text off? If it’s crap, why use it?
Dear Eve,
We are both very saddened to hear of Slim’s passing. We have read your ups and downs for the last 18 months since my diagnosis. We knew it was hard for the both of you, maybe more so for you – Marines tended to take things in their stride from what I remember of the brief contact I had with them (Scary people!). I doubt if anyone else could have hung in there as long. But it is now over, so time to grieve, put things in order and to quote my Mantra – Pick yourself up, dust yourself down and carry on. It’s also what Marines do.
We will both be thinking of you in our prayers.
Richard and Wifey.
Hi Jeff,
if I remember rightly, in the early 90’s the company you worked for started reducing its workforce by investing in new technology, you’ll know more about it than me. But, if that is so then the incidence of MM within former employees is even higher and on that point I think it really needs serious investigation. I am happy to contact various people such as senior politicians (of course hoping the lobbyists haven’t bought their silence), academics etc.
