Hi Debbie, welcome to the forum and I think you had the right approach to ignore the blood tests when MGUS but you appear to be one step further now so, again, you have the right approach to delve (at your own pace) a bit more into the world of MM. Must say didn’t know it could affect your sight so something new for me also. I was diagnosed at 50 with only 10% bone marrow but it nearly wiped my kidneys out so always bear in mind MM is unique to you and no two people are the same. My consultant on diagnosis (in a very critical way) could not get to grips with the extent of damage with only 10% but it is not unheard of so your GP is on the ball to arrange the skeletal survey. If x-ray only you have to have a fair extent of damage to show up so PET scans etc are better – if you can get one. You obviously have light chain MM, like me, and the significance of the ratio is when out of ratio it is a good indicator that the MM is active and can cause damage. The normal ratio is 0.26 – 1.65 so you are out of ratio. If you know your kappa/lambda numbers the normal range is kappa 3.3 – 19.4 and lambda 5.71 – 26.3. You will have one that is excessively over producing and affecting the ratio – that is your type of MM – I have lambda. The good thing is that you are on the radar and they will be testing regularly so you can always start treatment before significant damage occurs – just make sure you get all the tests available. There is a good info sheet on here about the free light chain testing which you will have to monitor your progress. With only 10% in my bone marrow I had a course of treatment followed by an SCT – am currently on the cusp of 3 year s remission. I would suggest you get a copy of your bloods each time and monitor your own progress but bear in mind light chains can bounce around abit so it is the trend you are looking for rather than individual results.
Best wishes, Rebecca
Hi Dean, Sorry you are hear but it is not all doom and gloom tho’ when you are young with children it is hard not to get beyond the doom. I was diagnosed with kidney failure at 50, similar to yourself I suspect I had it a long time but I used to work nights etc so can always explain the tiredness away and my kidneys were at 5% – I had been in kidney failure for 6 months with all failure symptoms but my Dr diagnosed labyrinthitis (ear infection! tut) – this meant my kidneys could not recover fully and am at 32% now. I am 2 1/2 years post transplant and living life totally as normal as before except with the “dark cloud” following me around- for me MM is more mental than physical. I was diagnosed at such a critical stage and I left the hospital just before xmas, without any literature (my choice) and did not dare look on the internet until xmas night and then the realisation started. I don’t mind saying I spent a long time grieving for my lost future – or the future I had planned, torturing myself about my daughter left motherless (on par to self-harming). It took me a long time before I could start looking up information etc – it was all too raw. This is a natural process, you have had one hell of a bombshell obliterating your life as you know it and it takes time to recoup, accept and move on as best you can. You must allow yourself this time and go at your own pace as it won’t effect anything – you’re not going anywhere and the MM is now on the medics radar so concentrate on you and your families needs now..there is no need for panic mode. What I can tell you is that this is not going away any time soon so formulate your battle plans – and by this I mean you and your wifes coping strategies as this is one rollercoaster ride and a real mind ****. Your MM has responded to first treatment which is a positive sign and you have lots of treatment available as and when you need them. The “double edged” positive is you are young – now this does not sound right because Mm is for the seniors not us young folk and I would totally prefer to have developed it at 70 (ave age) when my daughter is settled and I could accept it more but… you have more choices…you will be offered an SCt but will always have the Allo/mini allo transplant as a trump card if you want to treat it aggressively ( My kidneys were too damaged unfortunately). I am 3 1/2 years since diagnosis and still (touchwood) in remission and each year they are learning more and developing more treatments so try and consider this as a chronic condition. When you look on the internet the stats are not very relevant now as they are based on a time scale when the new novel drugs were not available. Drugs are improving, life spans are improving.. there is hope. If you really delve into the web – I would suggest the US myeloma beacon – you will discover people living well with this for many many years – yes there are also those who aren’t but what I would like to stress to you that MM is very individual and hence you are not that statistic, not that average life span, you are unique and whilst they may predict your outcome they don’t know. I have high risk cytogenics (this is not good – predicted aggressive, difficult to treat on average) but I was easy to treat and am 2 1/2 years post SCT ( higher than the ave 18 months) So whatever you read I can tell you of those who buck the trend because it is so individual. My advice to you is recognise your life has changed, decide how you want to forge ahead and arm yourself with coping strategies- note I am not saying literature, research etc because that’s the medics jobs your role now is to cope well with it all as a family and so this is where you energies should lay. Try anything and everything and see what works – mindfulness, to me , is the key along with relaxation techniques or hard exercise – adrenaline buzz (tho sometimes difficult on chemo!) Sorry, I am rattling on whilst drinking champagne, won at my daughters leavers sixth form ball….when diagnosed I worried so much I would not see her through her GCSE’s and when I did I hoped to see her through her A levels and now I believe I will see her through her degree! I know you will be looking at your daughters and torturing yourself with “what ifs” but this is so very very harmful and you must learn to block those thoughts as they are draining away much needed positivity. When you have such thoughts turn them round and think “well if I am going to die how do I want them to remember me?” and focus life on living, laughing, loving “Life is 10% what happens to you and 90% how you react to it”. As soon as we are born we are all going to die it’s just that MM brings it to the forefront of your mind and we are not used to this. Remain positive as you can do this – you will have your course of chemo to get you in remission and this will be strengthened by an SCT – 3 months recovery – and you’ll be back. I won’t say you will be back to normal as this is undoubtedly life changing and during the course of your treatment you will, I hope, decide how you want to live your life and prioritise what is important to you so in the end you live a richer life if not bitter-sweet.
Rebecca
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Hi Lynne,
I am sorry you have not had a reply. Where indeed do you start? Whilst I cannot advise you about your husbands condition I would just like to say that I too am going down the AMY path with LCDD- Light Chain Deposition Disease My kidneys are affected & I feel lucky not to have any other organ involvement yet. I am sorry they have found Amyloid Deposits in so many of his organs. I too have now attended the Royal Free for 2 appts six months apart to have SAP Scans, ECGs, walking test, etc. etc. . He must be feeling very poorly, and I wonder why on earth this hasn’t been picked up before now. Whilst Myeloma is very rare, Amyloidosis & LCDD are even rarer- yet all come under the same umbrella. I have just finished my 6th cycle of Velcade, Cyclo & Dex. Yes its been tough but I have got through it, and am now awaiting discussions for a SCT. Have the Royal Free discussed an SCT with you both after the chemo treatment?
The Royal Free are terribly efficient. I feel very lucky to be under their care, and it gives me confidence for the future as should Amyloids deposit in my organs- I am under their radar as indeed is your hubby. I sincerely hope you also have a proficient local consultant.
Sadly I have yet to actually connect with anyone else who has LCDD. But as it all comes under the same umbrella I read and educate myself as much as possible in all areas- LCDD, Amy, Myeloma. I have watched some extremely informative videos on the Myeloma channel. Afterall I may develop any of these in addition to LCDD. I hope this helps, It is a very difficult/frustrating journey- accepting the diagnosis, coping with the treatment BUT you will eventually reach a calmer place. Another Myeloma buddy advised me to break life down into chunks. I find this helps, I no longer feel able to plan ahead, but try and deal with how I feel on a morning/afternoon basis. I guess I now live in the present and take pleasure from the small things in life……..
All the very best with your husbands treatment, Sharron
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Hi Helen.
I’m having a Dex morning! A new one for me. So I’m nosing around on here to see how things are progressing.
So now the wedding is out the way the move is back on. The grass doesn’t have chance to grow under your feet! Have you somewhere in mind to move to? Have you already mentioned it and my chemobrain has forgotten it? lol
A holiday home too. That sounds a great idea might even suggest something like that to Steph since we’re creatures of habit going to regular places. Have you somewhere in mind? Though I’m determined to keep our Greece trips going as long as medically possible. Are you planning on buying a holiday cottage outright or a share in one? Hope I’m not being too nosey 😉
Ok back to things medical. I’ve still not heard from the Professor I guess I’m not on his radar yet. Though my consultant says she’s pestering him. I see what she says when I se her in April.
London is a long way to travel for a trial! I thought Nottingham was going to be a trek when the Prof. mentioned trials to me in 2012. How were your last bloods?
Wowzer it’s 9am already guess I’d better get moving drugs to take, breakfast to eat and believe it or not dinner to prepare. Thankfully I’ve got plenty of anti sickness drugs lol.
Hope everything is ok.
Every day is a gift.
Love Andy xxx
Sorry to have dropped off the radar for a while. My time in hospital post-SCT was much harder than I had expected.
I felt very unwell at times with a swollen mouth (but not sore), very sore throat and oesophagus meant I couldn’t eat and diarrhoea meant I didn’t feel like eating. For reasons unknown I had my dreaded hiccups back (normally comes with steroids), my temperature went up to 37.7 and my blood pressure down to 90/60. The nurses dealt with all of my issues but we never got on top of diarrhoea.
I’ve been home 3 days now and although I still have no appetite, my sore throat is very gradually feeling better, hiccups have gone but diarrhoea is still an issue. I’m having a full review on Thursday so I’m hoping for some good news about my blood recovery.
Hi Jan
How are things with you??? How is the treatment going,you are another one like Princess Fiona who has gone off the radar a bit!!!!,or is it me not looking into the site as much!!!!
Thank you for the connection recordmenow,I have looked at it,but do not know if it will happen,Slims not one for expressing his feelings about anything,so I have not spoken to him about it,watch this space you never know!!! I can see it could be a comfort to the person left behind.
We have both taken the attitude in the past,on all are travels we have never taken many photo,s that the memory,s belong to us and do not feel the need to share,or bore the kids for that matter!!
I do realise he is thinking about all the things he will miss,he would have loved to go back to NZ,so NZ is coming to us,Kiwi grand kids and daughter and husband coming over.so may be I can get a bit of a video going then,
Let me know how you are Jan?? How is your treatment going and what are the plans?? Love Eve
HI, it’s Chris here from Taunton. A few of you may have read my posts last year, but I have been off the radar for a while as I have been back to ‘normal’ life and not thinking too much about Myeloma.
Lena has told me about the re-vamped site, so I am having a look around at a few new members of the ‘club’.
I had my stem cell transplant in October/November last year, and I have now been drug free since May. I get a few aches in my shoulders and back if I overdo it, but generally feel really good, and fully back at work.
I am having 3 monthly checkups with the consultants at the Beacon Centre at Musgrove (next one next Friday), and a monthly top up of Palindramate for my bones but have given up the weekend antibiotic Sepsin as a year has gone past which is the recommended period.
If anybody has any questions I will be happy to answer, how ever daft you may think they are, as at the beginning of treatment everything is a mystery!
An amusing follow up to the SCT is that I have to renew all my childhood jabs owing to a new immune system, so in the last couple of months I have had the meningitus, whooping cough, flu, polio, and various others. Apart from picking up every cold going round, I have had no real side effects apart from an arm like a pincushion (nothing new there!).
Look forward to hearing from you all,
Chris and Lena x
Hi all.
Phew I'm Dex free now till my next cycle 😀 just waiting for the crash now :'-(
David – like I said in the original post those results are the norm for me and are the results I have to live with and I'm bloody well going to live with them 😉 though I must admit my neuts do make me a bit nervous.
I've been told at the day case unit if I get to cycle 25 then the Revlamid becomes free to the NHS. A goal to aim for but still not on my radar yet – I have my radar set a bit closer to home than that.
I'm glad you are getting on with plans for some holidays away I do think they give a you boost and a break from MM though they can be a bit nerve wracking at first being away from you usual medics.
Massive congratulations to you and Mo for becoming debt free 😀 what an achievement.
Eve – I'm on this regime until it stops working. Then it'll be a mad scramble to see if they can find anything else to keep the MM in check! I'm on 25mg of Rev 21days/cycle, 500mg Cyclophosphamide days 1,8 & 15 and 40mg Dex days 1-4 The only adjustment is if my neuts go down to 0.5 :-S then I stop the cyclophosphamide for a week. My beer intake goes up and down with my nausea – thanks cyclophosphamide :'-(
Vicki & Colin – I'm resigned to the fact that my PPs aren't going to dip much further I'm just happy they're stable and hopefully the drugs, sun and beer will keep them that way.
It's annoying that my back op has been delayed because it stopped us going to Belgium last weekend. No losses were occurred but still!
Tom – stable will do for me. After all you are stable too 😉 in a stable remission lol and long may you stay that way.
I try not to get p***ed off because it doesn't achieve anything and is a waste of energy BUT lol and I think Steph worries around blood test time as I do as I think the majority of us do but there's not a lot we can do about that.
Holidays, breaks and beer booked to date.
End of Sept – week in Greece. 😎
Early Oct – 3 nights in the Lakes 😉
After the Lakes off to the Nottingham beer festival 😛
And before the end of the year a weekend in Belgium to be booked no confirmed date as yet.
All the above are provisional and rely upon the skill and professionalism of my wonderful NHS medical team and the drugs they so readily supply me.
This ain't a rehearsal lets get out there and give it our best shot!
Every day is a gift
Andy & Steph xx
Hi George
Like you guys my partner Colin was fit and well right up to diagnosis, other than back pain starting about 6 weeks before a diagnosis. He was diagnosed within a month having had full skeletal survey, bone marrow biopsy, blood and 24 hour urine test! It a roller coaster alright! I don't thin now that you are on the radar George, that a few weeks will make a difference either way. They will plan and assess and then find the right treatment for you.
It is doable though, so be strong and hit this mm on the chin :-). We'd never heard of it before, now Colin has had front line treatment and a stem cell transplant!
Good luck with your treatment 🙂
Vicki and Colin x
Hey jean and frank,
Frank must have a built in sport radar….waking up for football and then rugby LOL! It's hard to see frank with the tummy troubles and not eating but it will pass. And his neutrophils are past the magic zero which Is great :-). As debs said things will speed up and frank will make a sure slow improvement. Be careful for yourself too jean, I haven't been 'right' since the sct (Colin would probably has I never have ha ha!). It's very stressful supporting the one you love through this very horrible time. But there will be bonuses when things get better.
Take care both……by the way not reading the news papers today, too depressing. The national sport of rugby for us needs to change to something like tiddlywinks…..we might stand a chance of winning then ! 🙂
Vicki and Colin x
Hi Peter
I think I know that now 😀 but you nip under radar as often as you wish 😉 but dropping by the normal way is better as its "Good To Chat"
Looked for you On Face Book, do you have a photo on profile? or is that you that just joined ??
And i will try to be good 😛
Tom Onwards and Upwards
Hi Tom
You have to remember that on our side of the hill we are very sneaky
15 stone ok , unless you are 4-6" tall !
The wine & chocs were taken several hours apart !
Going to rub grow more into beard to encourage growth
Very cold on top without much hair this weather
Outside today @ -3 c plus windchill I think spring is a long way off
Sorry I sneaked in under the radar , next time I wil ask !
Be good
Peter
Hi All
Frank feeling sick and terrible runs. Have given him tablets for cramps and sickness. Drips down. He had a power failure when doctor was talking to him 😛 . He slept for four hours and said that he has never experienced such a deep sleep. Doctor did not say anything about bloods but told him that "he was ahead of the pack" but not to get complacent as it will get worse. Thanks for all your good wishes
Best to all
Love Jean xx
Ps woke just in time for United match – think he's got built in radar? :-S
Hi Eve
I'm not off radar, I just don't come to this site very often, but I do blog fairly regularly, so if you want to know how I'm doing, you're welcome to read it: jetblackliving.wordpress.com.
And yes, you're right, after both types of SCT, you need to renew childhood vaccinations. But your haematologist and GP should advise you.
I didn't intentionally have a back to back SCT. I was in CR after the auto, but sadly it only lasted about 5 months, so I had to re-commence treatment in Feb this year, which was followed by a donor transplant, from which I am now recovering.
Thanks for your comments and good wishes.
Same to you.
Jet
Hi Jet
Nice to hear from you,must have been heavy going with back to back SCT,they do say it is the best thing to a cure.Have not heard about vaccination for shingles,but do know if you catch it early,have less side effects.
I believe you have to have all your childhood injections again with donor transplant:-S Helen got whooping cough,seems injection only last 7 years and she only had an auto.
So important to keep your immune system healthy,good luck for the future just in case you go off the radar again.Eve
