This topic contains 16 replies, has 12 voices, and was last updated by 
eve 10 years, 3 months ago.
Hi,
I’m a 37 year old man and have just been diagnosed with multiple myeloma. Obviously this has been a big shock for me and my family ( I have 3 kids,) and we are still trying to come to terms with it. If anyone has any advice I’d be grateful to hear from you. So far I have had 2 biopsies and 2 MRIs, I have been prescribed steroids (20 a day for the next 4 days) and been administered an iv to bolster my calcium and strengthen my bones. I’ve also been prescribed morphine for my back pain as the tumor that has developed is causing me considerable pain and hindering my mobility.
I will be starting an aggressive chemo next week but I am confused about the stem cell treatments. I have a sister who may be a match for donor stem cell treatment or I have the option of harvesting my own stem cells. Could someone please explain the pros and cons of either therapy? I have also been offered a trial for a new therapy (approved in the U.S. but not yet by the NHS) but I don’t have all the details to hand at the moment except that it is to replace thalidomide with a different drug??
I’d appreciate any advice,
Bryn
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Hi Bryn, At 37 you must have been shattered to hear the bad news. I am 71 and I was 66 when diagnosed, then 5 years ago this was considered an old mans decease, but I see more and more youngsters. I am not really up on the latest treatments now, having settled into a routine with the treatment I get and am happy with.
However the difference between Allo Stem Cell Transplant and an Auto are quite simple. Allo you are given Stem Cells from another person – a donor – might be a relative or could even be a stranger. Obviously the match to you must be very very good. In an Auto you go through a stem cell harvest of your own cells and they are then reintroduced to you during a Transplant. In both cases you have to have reached an “acceptable” level in your Chemo routine that you will have before the Transplant i.e. your paraprotiens must be low, you must be fit and all your organs must be in reasonable shape etc…. The difference is that in an Allo you have uncontaminated stem cells, whereas in an Auto your stems cells, that you harvested, will have some Myeloma in amongst them. The other big difference is the Allo is a lot riskier than the Auto. Your own Stem Cells will not be rejected but in an Allo your body could reject the Donor’s Stem Cells.
The bone strengthening is normal – I have been having first tablets and the injections for the last 5 years.
I hope this is of some help. Keep in touch
Kind regards – vasbyte
David
Bryn. You must be really worried. I was diagnosed at 40 with very similar symptoms and family situation. At this point, it is very difficult to take anything in or be positive….but it will get better. The steroids will be a nightmare at first, but this and the Zometa will sort out your pain. All of the terms and options will not make any sense at the moment, but given time, you will understand. Don’t be down hearted if you don’t receive the trial drug, I didn’t, thalidomide is still very effective and worked for me and does in most case a as a first line treatment , but it can be individual (myeloma). You certainly have a lot in your favour, age wise. 2 years ago, I could not walk, was in constant agony and feared the worst. I am now back to work full time and doing normal every day thongs that I used to take for granted…but treasure so much more. I had an auto SCT and it was fine. The chemo was ore difficult to tolerate, but even that was something I got used to, again I was back to work full time 3 months into that, but you do have good days and bad.
Please don’t try to get too down about it, lots of support on here I am sure and lots to be positive about. I a sure at this moment in time it is like the end of your world, but persevere.
Best wishes, Kevin. Apologies for sown spelling mistakes, it will not allow me to correct without re-typing!
Thank you for these words. How you have described yourself as unable to walk and in constant pain is how I find myself at the present time. I am supported by my wife but feel bad that she is having to also go through this. She tells me not to be silly but at the moment I feel sorry for myself, I have previously led a very active lifestyle and am frustrated that my current health conditions have left it almost impossible to do anything. Your story has made me more positive and will be what I think most about today in order to stay focused and positive.
Kind Regards for taking the time to write this.
Bryn
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 Bryn,
Just to add my sixpenny worth to the comments.
Getting the news that you have MM is a heart stopping moment and your world seems to implode. Do try to draw some comfort that there are many of us here that have been through the same early stages. Somehow we all cope and things are rarely as bad as they seem.
Keep telling us on your progress and how you and your family are coping.
Best wishes
Don
Hi bryn,
My husband is 45 diagnosed early this year with mm. He had been having back pain until one day he sneezed and i found him collapsed on the floor unable to move. We discovered soon after he had spinal chord compression caused by a tumour on his spine.this was what was causing his back to spasm.
5 days radio and with help of a zimmer frame he began mobilising.
started with ctd 4 cycles whch knocked thngs to 1.7…….. Had stem cells harvested, but things crept up not sure why or how i think because there was too bg a gap to transplant but thats my opinion. Now transplant has been delayed and he is on VD, mobility has improved almost 90% reduced morphine, stiff first thing with aching hips he explains.
His pp levels shot up to over 20…… That was result from first dose of VD after next cycle specialist will re check and decide if to try VCD ??? We still find things confusing, but i tend to go on the net etc…… He says he doesnt want to!! I will get him to a support group if one comes up as i feel talking to others will get you through it.
i wish you well on your journey
k
Hi Bryn,
So sorry you have joined the club. I was devastated to be told earlier this year with bone damage arm,pelvis, spine T5, and 5th rib left side, plus skull. Had large plasmacytoma(tumour) rib 4″x2″x2″. Operated on in march, chemo April,stem cell harvested last week and SCT due next Monday. For me round one is nearly over and iv’e had excellent advice from people on the site especially Rebecca. As she would say you have age on your side and should sail through it. I feel in a very different place from 5 months ago due partially to gleaning advice and inspiration from members of this forum.I had bone pain back ribs and arm which got worse with the first week of chemo (a sign is’s working) then after that the situation improved that much that i probably felt the best for several years.
Best regards
Stanley
hi, im holly just been diagnosed last friday ive got 3 children . its a shock.dont know what to expect . im only 41
can anyone advise me about the trials they offer, do you have to stay in hospital for these, i dont want to leave my children. need some advice please………
Holly, sorry that you have joined this club, but it is the best place for sound advice and guidance. I was diagnosed in 2012, went onto the myeloma XI drug trial! it is all tablet form! no hospital stay. This was followed by a stem cell transplant. Not trying to tell you that it was easy, but I did it, so have many others. My paraprotiens have gone down to 2.6 so I am in partial remission. I now don’t take any drugs, we travel a lot, have been to Spain, San Fransisco and Hawaii as well as travel in the UK.
Throughout the treatment I have tried to stay as positive as possible. I try not to let this thing get me down and try very hard to do as much as I can.
Do get tired, so have learnt to listen to my body and stop when necessary.
There are other postings on this site about keeping children informed about your health and treatment, to my way of thinking I think children should be kept up to date with everything that is going on.
Good luck with everything, remember you are not alone.
Regards
Tony F
Hi Holly and Bryn,
Am so sorry to hear you have been effected by this and cannot offer any words that will be of comfort at this stage but it does get easier, you get harder, you cope and function and life goes on in an almost surreal way = sometimes I feel I am 2 persons! and no not on psychotic drugs. You are young and you have the best trials/options and resources on your side – this is no small comfort now but will be once you have learned much more about MM. Holly – trials are all different some aggressive chemo combos will be as an inpatient but many are not – most will not be but be ready to be tired and schedule help with kids etc. Youth is a big factor in how chemo affects you and both of you will sail through this physically, spend your time working on your mental strength. Make use of this helpline as they will talk to you in depth and you will feel comfortable in asking what you may think as “silly” questions – nothing is too trivial to ask with regards your health now. Consultants are good but never spend the time that Ellen will on this helpline helping you make sense of it all and pointing you in the right direction. Don’t be too hasty in making decisions about what/how to tell the children as it will all evolve in time – at the moment concentrate on how you intend to tackle this, who you want to tell etc. try and control what you can in the way that you want to. I would suggest you look only on this site and the US myeloma Beacon site for info – too much old news anywhere else. You will be told this countless of times but remember MM is a very individual disease so you are not a statistic and you will not follow the “average” statistic path – everything is possible and doable. Please remember “life shrinks or expands in proportion to ones courage” and this is the time to “live it large!” and by this I do not mean you are about to pop you clogs because you are NOT! just brace yourself, square up to it and knock it down!
Rebecca
Hi Holly, so sorry to hear someone else has had the similar news. I was newly diagnosed 6 weeks ago. My advice is to really understand what you are dealing with, as others have advised myeloma is a totally individual thing. During my first visit to the specialist I was told I would have chemo followed by stem cell replacement and would have to cancel my holiday. Since then, I have had an MRI, PET Scan, Bone Marrow, Full body X Ray, Loads of blood tests, Urine samples. I have had additional appointments and very lucky to have smouldering myeloma, whilst I am told it will go to full MM at sometime it could be I month, 6 months, 5 years who knows. Like you I have two kids, so life has to go on and will get on with it. The great news, I can go on holiday apart from bone strengthening drugs no treatment. So as I said earlier it is very individual I don’t write this for no other reason than to say really understand it, clearly it is not the end of the world. I have admiration for some of the posters on hear they have been a great strength to me with clear understandable knowledge. Good luck and stay positive.
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.
Hi Bryn and all the other new comers that have joined this post.
We all approach the news of Myeloma differently ,we were just glad we new what it was!!!!
Then you get all these books and you are having to make choices about things you do not know anything about,you spend time reading a book,but it’s hard to understand at first.
As Dick says ask questions but if you do not understand the Myeloma what questions do you ask????
Ring the number the top of this page it’s free speak to Maggie or Ellen,they can help you.
Find out what Myeloma you have although it’s treated the same it will give you some insight !! Ask for all your scans or MRI results find out were all your damage is.
This is a big learning curve and knowledge is the key,if you have problems with your consultant change consultants or even hospitals,many consultants specialise in Myeloma my advice would go for that one.
Trials offer you medication you cannot get on NHS,,learn all you can before you make a decision !!!!
I cannot give advice to people with young children but there are a lot of people on here who can,join the under 50 you are allowed to swear on there lol.
This is a roller coaster with lots of highs and lows.the are statices on Myeloma if you want to know about them ask the consultant,this is treatable but as yet no cure,but who,s to say it might not be long or just round the corner.
I say this with the knowledge that mu husband has had Myeloma for three and a half years and is now coming to the end of his journey,with all it’s highs and lows,we never gave up hope,and we refused to worry about tomorrow and spoil today.
I wish you all a good ride on this roller coaster and as Andy says ever day is a gift.Eve
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