Hello, Jasper. Sorry to hear that your Mother has been diagnosed with Myeloma, or that there is the prospect that she will. To answer your questions directly; The tests that will diagnose the myeloma are as you say the blood counts and the bone marrow. The blood tests will determine the type of myeloma that may be present and the bone marrow test will determine the extent of the disease. In addition I would recommend that your mother has a full body scan to determine any potential bone damage.
I am biased as I live near London, but I believe that the beast place for treatment is London. Your mother also has the right to be treated anywhere as a cancer patient. Royal Marsden in London or in Sutton will serve your Mother very well, but I have heard good reports about UCLH as well.
I hope that this helps.
Tim
Hello Jill,
Light Chains of 10,000 plus is not unheard of. On diagnosis mine were 11,200(Lamda Light Chains). These came down immediately on treatment to 1075 within 2 weeks. Following the CTD programme (5 cycles) they fell to 53. They do respond immediately if the treatment is successful.
I visit the consultant once a month for blood tests and at each visit they provide me with a printout of my results.
Good luck and I hope that this helps.
Tim
Hi John,
I've also been through the Myeloma X1 trial. I started in May 2012 and had a transplant in September 2012. I too had three fractured vertebrae so know exactly what you have been through. You will be randomised twice, firstly for your initial treatment and then secondly when you go onto your maintenance treatment. In each instance this will be done immediately by computer.
Good luck and I hope this information helps.
Tim
Hello Carol, I cannot help you on the collar bone front, as I had vertebrae problems which is perhaps the more well trodden path; however I wanted more to advise you that CTD treatment does not have to be 18 weeks. I did 4 cycles of 4 weeks but I was in full remission after 3 cycles and could have skipped the last cycle. Please check with our Doctor and hopefully you will respond to treatment within a few cycles. Hope his helps. Tim.
Hi Susan,
I did 4 cycles of CDT before going onto my SCT. The main symptoms I had from CDT was feeling tired and listless. This did include light headedness but I discovered that this was because I was not sleeping enough; as a result I started to take naps when my body told me I needed to and I found that this helped. I also found that my ankles would swell, but this was temporary and that my appetite and digestion were affected. Also certain days were worse than others, most noticeably following the C part of the treatment – I would make sure that I was not committing to too much immediately following these days.
In the first cycle we discovered that I was allergic to Septrin, so this was stopped which I also believe had a beneficial effect on how I felt.
Hope that this helps and good luck.
Regards,
Tim
Hi Glynn,
Thanks for your message but sorry to hear of your recent diagnosis.
Hope my note to Susan above helps but if you want to chat about Myeloma XI I am happy to do so at any time.
I have been to hospital today and I begin my maintenance programme tomorrow. I have been randomised to Revlimid and again enter the unknown, apprehensive of potential side effects. The good news is that if you cannot tolerate any of the treatments you can come off the trial at any time – so in reality you are always in control.
Regards,
Tim
Hi Susan,
The SCT is certainly the elephant in the room but when I look back I always felt that i was in the hands of experts and that I would follow what they were recommending. This was my guiding light.
With regards to the treatment itself, I was apprehensive more about entering the unknown but in hindsight all of the unknowns were predicted. Following SCT you will feel weak and tired, but this is manageable if you have support from family and friends. You will get a sore mouth, but this is managed through mouth washes. You will lose your appetite but this comes back. You will get diarrhoea but this will pass. You should take comfort from the fact that the worst of the side effects only lasted 3 / 4 days. I should however caution that I did not get an infection; this is very possible and can knock you back, but I was lucky.
As a barometer of condition, when I came home I could only walk up the stairs, one foot and one step at a time. I then found that I could walk one step at a time and then two steps. After about 16 weeks post transplant I can now run up the stairs. All in all the process has taken about 20 weeks.
I am glad that I had SCT because it has put my MM in remission and my medical team believed that it was the best treatment that I could have at this stage of my personal journey against MM.
I hope that this helps you in coming to a decision – one thing to remember is that you can have your stem cells collected now and because they are frozen you can decide when in the future to have your transplant, you do not need to have stem cells given back immediately.
Regards,
Tim
Hi Lisa,
I have had a couple of infections following CTD, in both instances I had already begun to feel unwell – the temperature then confirmed this. My advice would be, as soon as the temperature rises above 38 you should contact your hospital. They will probably give antibiotics to get things back to normal.
With regard to Zometa the infusion now only takes 15 mins. I have had no side effects and take it once a month. It is intended to help protect the bones from any further MM damage.
Hope that this helps.
Tim
Hi Lesley,
Sorry to hear that you have been diagnosed with MM but you will find this site a great help. I reply specifically because I joined the Myeloma XI trial in May of last year. For some reason I went down the CDT route – I did 4 cycles of 3 weeks each and then went straight into the SC transplant. I am 17 weeks post transplant and about to start my maintenance programme. The good news is that I am pretty much back to normal ( as predicted by my medical team). If I can do this anybody can! If you want to know anything about my treatment I would be happy to help out so please ask away.
Good luck, there is definitely light at the end of the tunnel and so much to look forward to. I live with optimism and have today booked flights to Scotland to climb Ben Nevis.
Take care and keep strong – you will get through this.
Regards,
Tim
Hi Tom,
Thanks for your posting regarding the Nature special. I'd be grateful of a copy if you can send one through.
By way of returning the favour I attended the Myeloma Information Day in London in December and have been sent a copy of some of the presentations focusing on future treatments if you would like copies. Likewise if anybody else out there would like copies too?
Regards,
Tim
Hi Maureen,
I had balloon kyphoplasty to T7 & T9 vertebrae, which sounds horrendous but it was keyhole surgery and I was up and running within 48 hours and did not need any further rehabilitation.
Sounds as though Ian's diagnosis was a bit different to mine.
Regards,
Tim
Hello Maureen,
Welcome to the site; although ideally you do not want to be here you will find the people friendly and a great source of support.
I reply simply because I have had a similar experience to your husband and I have managed to come through it. Although at the other end of the country I am of a similar age (54). I was diagnosed in May of this year with MM following back pain and a spinal operation to repair 3 of my vertebrae that had fractured.
I subsequently followed a 12 week programme of medication and I then had a stem cell transplant in September. Today I am 14 weeks post SCT and feeling pretty good. I too felt weak, but the strength does return.
So please take heart from my story and try to get through the festive period as best you can.
Good luck and stay strong.
Regards,
Tim
Hi Tom,
I have just finished SCT and am currently 12 weeks post treatment. There is definitely maintenance treatment available in the UK. I am on the Myeloma X1 trial and will be randomised to a maintenance programme of either no medication, Lenalidomide or Lanalidomide and Vorinostat. My understanding is that irrespective of the trial, all patients are considered for a maintenance programme that is best suited to them. My advice would be to double check with your consultant. If you want the inside track on the SCT I'd be happy to help.
Regards,
Tim
Hello Charlotte,
I am three months post SCT and have just had a full spinal MRI. It seems to be the de facto way of establishing the extent of any damage to the bones and a key part in determining whether existing treatment is working. I would push for an MRI if you can. Good luck & best wishes.
Tim
Hello Maria,
I came across your message today and felt compelled to reply to you as hopefully I can pass on some of my experiences which I hope that you find of benefit.
I am reltively young (under 55)and was diagnosed in May of this year. My diagnosis came to light as I had ongoing back problems which was initially diagnosed as requiring physio – this went on for 6 months before eventually a sharp eyed GP referred me for an MRI scan where vertebrae fractures were discoverd, which then led to blood tests and eventually MM diagnosis. I then went through 4 cycles of initial CDT treatment followed by a stem cell transplant 11 weeks ago. I am now recuperating at home and am feeling good.
Like you, I have found the hardest part of this getting my head around the diagnosis, the likely outcomes, the potential for remission and trying to predict the future.
For what they are worth, these are my tips based on my personal experience over the past 7 months:
1. Generally be a good patient and do as your told. However, try to read between the lines and be absolutely prepared to ask the questions that you need answering.
2. Realise that MM is not a cancer where the outcomes can be easily predicted. Everyone is different and the course of treatment is very much down to how you respond.
3. Try to speak to as many people as possible, other patients, doctors, your care team etc with a view to forming your own opinions on how you think this thing may play out over time. I have met patients who have been in remission for over 10 years – so treatments are definitely working – but contrast this with other patents who are less fortunate. This is why predicting the future is so difficult.
4. Try to build a picture of MM through research as much as you can, just to give you a background against which you can assess your own development and to help you keep things in perspective.
5. Be open and honest with those closest to you. Front up to MM together and tackle it head on and try to plan your future as best you can.
6. Understand the treatment that you are being recommended but always ask 'what are the alternatives' so that you have an informed choice.
Finally, it is very reassuring to know that senior people involved in MM are now openly talking about MM being 'cured' in some patients given that they have been in remission for so long.
I hope that this helps and please feel free if you want to ask [u]any[/u] questions.
Regards & good luck!
