So, you’ll be in the 70% success group. Good luck.
Richard
Hi,
Rally sorry to hear about your dad, no matter what people say it can’t take away the way you feel and the despair that such news bring. However, for your question, it is hard to give an answer, it really is about the individual person – how much fight they have in them. I’m sorry I can’t be more specific but there is no specific answer.
Hi there,
Yes they tell all of us under 65 that it is uncommon but there seems to be a lot of under 65’s with it. The feeling poorly is normal, I don’t know what your consultant has told you but immunity system is severely compromised hence feeling ill all the time. I am surprised that you haven’t started Chemo yet, did they give any reason? As for MM and this website, there are a lot of very knowledgeable and supportive people on this site and no matter how petty you might feel it is, if you have a question then post.
Good luck.
Unfortunately, we all know that horrible time will come, let’s just hope that your consultant is thinking ahead rather than respomding to some specific data. All the best and I hope your wife’s remission continues on.
Richard
Hi,
I can’t help with an idea of the cost of a SCT but your post worries me and probably a few others. After the government has decided to cut the Cancer fund and all the money wasted with more reforma, perhaps, you – the patients (I can’t, I live overseas) ought to start lobbying your MP’s or e-petition No 10. Afterall, it is your lives they are risking, not theirs. At the risk of becoming political, I think you need to read the piece below, bit of an eyeopener if only proved to be half true. Again a case to worry about your future.
Hope you don’t think I am trying to hijack your thread but it beggers belief that a health system that is supposed to be for everyone is now being more exclusive and, like insurance companies, will operate on the basis of looking after those that are low cost amd may not actually need it.
Hi Eve,
I’m sure there’s a lot of us on this Forum that are thinking of you and Slim at the moment.You’re probably as strong as Slim is stubborn but that doesn’t mean people can’t help when needed.
All the best Richard
Just to add to Martin’s post, before seeing your consultant, write down a list of questions and don’t be afraid to ask. It will all help with you understanding your illness and living with it.
No, no ones trying to kill you, God just hates ex SNCO’s. They kept blaspheming and using bad language to the youth in their care. You could always repent and see if he lets you off. 🙂
Hi Alison,
you will find your illness will be catergorised. e.g. I have Multiple Myeloma IgG Kappa. The IgG refers to the actual Immuglobulin that is affected. Some are IgM, others are IgA, IgG is the most common. The kappa refers to the Light chain that is affected. I still don’t understand it all and there are some good Oracles who use this site and will be able to tell you more. The plan for us is to attempt to have as normal life for as long as possible because we know it will come back and ultimately, it’s a battle I can’t win.
Hi there, Think of Life of Brian and “Always look on the bright side of life”, the words are so true. I have a 7 year old daughter, she had just turned 6 when I was diagnosed and probably like you we were on the internet getting more and more scared as we read various stories and statistics. Anyway, 18 months on, post Allo SCT, I did not have a good remission IgG stable at 23, I am only classed as stable. But – I go swimming with my daughter, I use my bike almost daily, I have stopped taking the painkillers and as much as possible am trying to have a normal live. I still have to take antibiotics and anti viral drugs and go for a monthly blood test.
Feeling guilt for being ill and your wife having to do so much has probably affected most of us, sometimes the stress gets too much and we have a heated discussion about the illness and where we are in our lives and I would suggest that is normal for everyone. Our partners are good at seeing things differently, I would have died last year if it wasn’t for my wife, that I am sure of and she is always reminding me about checking my temp, avoiding certain places or people because of infection. Some would call it nagging, that’s too negative, it’s called caring. The partners have a far worse time of it than we do because we get all the care and support and they are left to deal with so much alone. One day, you will improve and start to be able to do things again, you may decide to reassess your life and ambitions but whatever yo do, your life and that of your wife will never be the same. So, I would suggest you keep on the website, forget long term planning but look at short term and set objectives – where you want to be in 6 months for example and make the most of your time with your family, As I said in a previous thread, my doctor said it’s about quality of life now, not how long. After saying that I still intend living long enough to collect my pension, I’ve paid enough into system and I’ll be buggered if I’m going to let them keep it.
Hi there, well, you’re a year older than me (hope you don’t think I’m rubbing it in) and in a similar position I believe. I too had an SCT in January this year and have not achieved total remission, in fact my IgG is at 22.5 and has been stable for the last 6 months. I was gutted when the medics told me my IgG level and they wanted me to have a tandem SCT but I refused. My reasoning was that it didn’t work first time so why should it work a second. Also I didn’t believe I was mentally tough enough to go through it again so soon after the first. They also didn’t try to argue against my reasoning.
We are now 6 months on, I have cut out the pain killers for the bone pain in my shoulders, I go for blood checks every month and they show everything is stable and so the attitude is to leave alone until it starts to get worse. I am still not working, the medics say I can do upto 6 hours a day but are very worried about infections so they advise I wait until my ‘T’ cells – whatever they are – have a count of over 200. I spent a few weeks in June at a rehabilitation clinic for blood cancer patients and they put a lot of emphasis on sport and physical activity. That I believe did help a lot and I do regular shoulder exercises – that’s were I have the most bone damage. I also met a chap, 54 years old who had had 2 Auto SCT’s and a donor one as well, Last year he took his motorcycle for a 6 week tour around S. America. He most certainly wasn’t feeling sorry for himself whilst waiting for God.
So, I think the moral of the story is, whilst we are in a position no one wants to be in, it is not the end of the world and we can be just as active and have as much of a fulfilling life as the others who have achieved total remission. As my Doctor said, it’s not about how long for us but quality of life.
Hi,
We have adopted a “need to know” attitude with our daughter who is now 7. Last year we bought the Kelsy book which she read and refers to sometimes. The illness has affected her, especially when I went into hospital for a few weeks at a time and she keeps asking me or rather telling me to be careful so I don’t break any bones. On the whole she has accepted it but no matter what you say or how you try to deal with it, it will affect them. We try and cushion her as much as possible whilst also trying to be honest. For example we tell her I have to go to hospital for blood tests but reassure her that I am coming back. Her school teacher is up to speed on things and keeps an eye on her. In fact when I had my SCT, our daughter was updating the teacher daily on my condition. There is no easy way or right or wrong way to tell them, I believe it is something every parent has to decide for themselves as only they can truly know their child.
Well, they do say that the three big risk industries for MM are Agricultural, Nuclear and Chemical. Looking at the amount of chemicals used in modern farming let alone in everyday products and the increase in radiation in the atmosphere since the 60’s the question really should be why haven’t more of us got it. Beter be careful, MM can be used to mean Melton Mowbray as well as Multiple Myeloma. Another link between the town and the illness.
That’s really good news, a real case of not giving up. Still, to be expected although some call it being stubborn. Carry on being stubborn and let everyone read and digest – it’s not over ’till it’s over
mmm, third post in succesion that refers people to myelomacrowd. Though no doubt very useful, do they have more info than Myeloma UK?
