[robert0439Participant]

Hi Everyone,

I only registered this evening as a new member, so a big hello to everyone out there.

I was diagnosed with smouldering Myeloma around 5 weeks ago, following an MRI scan and then a bone marrow aspiration – which by the way, really hurt! It was a real shock to me as currently, I feel really well, especially as I retired early last year and have no symptoms, pain etc.

To date, I have had a total of three blood tests which I have been given copies of by my haematologist at the hospital and since then, have been trying to make some sense of it all, especially the terminology and what the numbers actually mean. On a personal level, I would prefer to know exactly where I am and have already started monitoring specific items for trends etc. I guess this is just me, as it gives me a feeling that I am in control, rather than it is in control of me. My M spike is currently at 26

My wife’s mother passed away from Myeloma in 1983, so I am aware of what Myeloma is however, I was quite shocked to discover, that after over 30 years there is still no cure however, leaps and bounds have been made in the treatment of the disease.

During all these years I have never been in contact with anyone else who suffers from any stage of Myeloma, so once again, quite a shock to know that I had been diagnosed.

Apart from my family, it’s difficult to talk to anyone else as they like many others, are unfamiliar with the disease, so hence my blog to everyone out there this evening.

I have another follow up meeting with my haematologist next week, following my last blood test at the beginning of this week, so if I may, will post what they have to say.

Thanks for listening to me.

Regards,

Robert

[martinebbageParticipant]

Hi Robert So sorry you have had to join the club. My situation is very similar, I am 55 and I was diagnosed at the start of July this year. I am also smouldering like you, with no pain and feel well for which I am very great full for. I am also trying to make sense of it and understand what I am facing, I luckily have had every test under the sun MRI, PET Scan, Full body x-ray, Bone Marrow test, Numerous Blood and urine tests. My areas of concern are my Para protein levels are at 13.9 with my Kappa Light Chains 850 mg/l with a Kappa Lambda ratio of 72.03 what ever the hell that means. I have my next appointment in 6 weeks when I will get some clarification but when I asked before it is a case of wait and see as they do not know when it will strike could be tomorrow, 1 month, 6 months, 3 years, 5 years. It appears after speaking to my specialist and nurse and reading all the posts, it is so very different in every case. So I have been just keeping positive, just got back from two weeks in Disneyland Florida with my two girls 16 & 14 I am also lucky to have a fantastic and supportive wife, so have so much to be thank full for. However 01st day today in the 2 months since diagnosis that I have felt really down but I will get over it. I wish you all the luck in the world there is always someone worse off.

Regards

Martin

[robert0439Participant]

Hi Martin,

I did a copy and paste on my last post, which did not seem to work so here goes again.

Thank you for your response as it’s nice to hear from someone in a similar situation to myself.

At my last meeting with my haematologist, I actually said that if there had been a mix up with various individuals, then I would not have been surprised, as I don’t feel any different to what I have felt previously.

I don’t drink (but maybe now is the time to start…), have never smoked and have a really good diet, and take moderate exercise. My weight is good and have a BMI just above what is considered to be normal, so even more of a shock to me when I was told the news.

With your Paraprotein levels as they are, I would not worry too much as I am told 30 is the cut off point from being considered as smouldering, to the next stage of Myeloma. Like you, my kappa light chains are pretty high at around 260ml/L however, because my lambda light chain are so low at around 1.95ml/L, my kappa/lambda ration is very high at 133, which supposedly indicates that the Myeloma is active.

I also have a low haemoglobin, red blood cell and white blood cell count. What concerns me here, is that these leave me with a lower than normal immune system and I may be vulnerable to picking up an infection. I have therefore started to take some supplements to try and boost my immune system. I am also taking some other stuff in order to try and stay at the smouldering level, which as we know is then a “watch and wait” scenario.

I am actually 62 and retired around 18 months ago so have far more time on my hands than if I was working. I have done quite a lot of research on the whole issue of Myeloma, in order to make more sense and to try and understand what drives it. There are some interesting blogs out there for people who are interested in doing this, but I can also understand other who may not wish to. If you are interested, check out “Margaret’s Blog” at the below link where she has been smouldering for many years:

http://Margaret.healthblogs.org/

I too have a fantastic wife who has been so helpful and supportive over the past 5-6 week. I have managed to keep my head up so far and think positive, but there are times when I start to slip to the dark side, but fortunately, this is not for long.

To “celebrate” my news, the first think that we did was to book a holiday, as we intend to carry on with our lives while we can and enjoy our time.

As I mentioned in my first post, I see my haematologist next Tuesday, so will be interesting to say the least, to see what has moved on my numbers etc.

Thanks once again for your comments and may I also wish you well going forward.

Regards,

Robert

• This reply was modified 10 years, 2 months ago by  webteam. Reason: Removed Word formatting

[CarolsymonsParticipant]

Robert and Martin may you both smoulder for a long time cos treatment can be quite debilitating. I am now just past 7 months after stem cell transplant and in complete remission. People on here talk of the “new normal” and I am certainly not back to how I was before diagnosis. So, do whatever you can to smoulder for as long as possible would be my advice.

Carol

[robert0439Participant]

Good Morning Carol,

Thanks for your valued feed back and I will certainly try and do whatever it takes to remain at my current smouldering level.

My thoughts are with you and I sincerely hope that you continue to feel better.

Regards,

Robert

[petesilverParticipant]

Hi Robert

Sorry to hear your about your condition and as Carol said hope you smolder as long as possible, however in the event you need treatment progress has come on in leaps and bounds since I was diagnosed in 2004 although some of the side effects are not good, have to say they have kept me going, I have to start another regime next week but hell I’m still here and doing most things but when I can’t do something cos I get to tired I put it down to age.

Still enough of me, I really do hope things go well for you.

Regards Peter

[robert0439Participant]

Hi Peter,

Thanks for your comments of support.

<span style=”background-color: rgba(255, 255, 255, 0);”>Must admit, I have not looked at anything to do with treatment as I am not at that stage yet but reading the many posts from others, the treatment does seems to have some rather harsh Side effects.</span>

it goes without saying that I hope things are well with you.

Regards,

Robert

[blackswanParticipant]

Have finally put finger to iPad to relate my tale of multiple myeloma, good and bad. I am well aware having avidly read this wonderful site for coming on to two and a half years without contributing how widely varied peoples experiences are. I hope this  entry might help some.

In January 2012 I closed the boot on a Mini and quite bizarrely managed  to break my collar bone, which was hugely painful and seemed a little unfair really. I was 57 years old, fit healthy and busy owning and running a Cumbrian hotel with my wife. Not good for the golf swing but was assured it would fix itself within six weeks and everything would be back to normal. As time progressed however it became obvious that the pain if anything was getting worse and there appeared to be no bone knitting going on, and finally a tumour began to develop over the site in May. Alarm bells ringing now and scans and blood tests revealed the multiple myeloma. It has to be said  other than pain in the site itself   I didn’t feel at all unwell.

And so onto chemo,thalidomide and steroids in  June. Also had radiotherapy in June and remarkably within two weeks the  tumour and all the pain disappeared which was an amazing relief and gave me great hope looking to the future. The  drug regimen will never be pleasant, lots of sharp scratches, insomnia from the steroids and feeling ok but dragging, I seemed to be doing better than many on this site. In October 2012 had a bit of a low, admitted to A&E with a blood clot in the bowel apparently caused  by the thalidomide, struggled a bit for a couple of months, but came out the other side feeling positive. The chemo was stopped then along with the steroids.

SCT at Newcastle in January 2013. Read lots about it beforehand. Bit daunted to be honest, who wouldn’t be? In my case it was  ok , I wasn’t sick, didn’t feel grand but was something to get through. Didn’t require transfusions and was out again within two and a half weeks and really recovered pretty well. Officially declared to be in full remission in May so went on a Baltic cruise. Well you would wouldn’t you?

And so onto now. Was in remission for 18 months ,feeling pretty good, but a new problem with compromised ribs and a new tumour that was very painful but has just been dealt with very successfully with another bout of radiotherapy. PET scan revealed  several hot spots and have just started chemo and steroids again. Don’t feel unwell but insomnia is taxing .

Looking ahead , I take great store in the fact that despite setbacks things have gone pretty well given the nature of the problems. So far the old body has withstood a few indignities and bounced back and it has to be said I would appreciate if it would continue to do so. I am looking forward to being in remission again by the springtime by which time another cruise could be due.

The care and attention I have received from the NHS in Carlisle and Newcastle, under Professor Jackson who headlines  MyelomaUk has been inspirational as has been the wonderful ministrations of my wife and daughter. This condition has proven to be a roller coaster. But it is I believe harder on those that love you. Repeated remission is a distinct possibility and medical progress is on our side.

I feel good!

[CarolsymonsParticipant]

Hi

Black Swan

Another collarbone diagnosis, the only one I have heard of apart from mine! My collarbone too just went as I was alighting from a bath, although I must admit it had been a bit sore for about 3 months. In A&E they also wanted to send me home with a sling for 6 weeks as the X-ray didn’t actually show a break. However I had a huge swelling on the collarbone and basically kept insisting something more was wrong. I cannot believe that A&E doctors are not more aware that a pathological fracture (no impact etc etc) should always be investigated. So….after a lot of assertive discussion on my part luckily I was admitted and diagnosed with Iga lambda myeloma a week or so later after all the usual blood tests, X-rays, CT scans and biopsy. Otherwise I would have been like you, sitting around for 6 weeks with the myeloma active. I was also fit and healthy on diagnosis so it was a huge shock. I am now more than 7 months post transplant and in complete remission thank goodness. I too did a Baltic cruise in July with Oceania cruises spending 3 days in St Petersburg which was great, although I did pick up a cough somewhere on the cruise which is still troubling me.

[davidjParticipant]

Hi Robert,

It may seem a strange coincidence, but I was also diagnosed with multiple myeloma at the age of 62 and two years into retirement – as you say, quite a bombshell to receive the news. At the time of my diagnosis, my paraprotein was 74g/L and I was very weak physically, and there seemed to be quite a lot of hesitation as to whether I could be treated successfully. Fortunately my positive attitude and the fact that I had been very fit and active right up until the diagnosis persuaded the myeloma team to treat me. It is now six years on, and although I must admit it has been quite a tough ride at times, I am now enjoying my present life more than ever before and even taking on more challenges. I have found that the most important mental attitude to take is to take each day as it comes; do not look into the future, nor think back on where you were before, but just live in the moment and enjoy each and every day to the full. Good luck with your treatment.

Best Regards

David

[twigs51Participant]

Hi, I too have only just registered.  My Husband has been suffering from a bad back as a result of lifting a heavy piece of furniture, my fault.  He had all the tests, scans etc. and nothing showed.  However, a blood test was taken which showed he was a little anaemic.  He was given tablets to improve this and then following a further blood test, he was referred.  He had deep bone scan and the bone marrow test which showed he had myeloma.  This was a shock to both of us as, like others, he felt well.

He has been on chemo tablets, etc. for one month and has coped very well.  However, one week into his second treatment, he has had bad pain in his legs – tested for blood clot, but ok, and then put on antibiotics – we are not sure what has caused this etc.  He is now complaining of being breathless and is sleeping quite a lot.

We do not know his levels etc. and nothing has been mentioned so now worrying – should we find out where we are.

Have others suffered similar side effects and does it get better?

 

 

[robert0439Participant]

Hi,

I cannot really comment on the issues of side effects, as my current “smouldering” position is just watch and wait however, if you are not happy with anything, then suggest you contact you husband’s myeloma nurse specialist at your myeloma clinic or, or seek further advice from your GP.  Also, don’t be afraid to ask questions so you can understand your position more clearly.

From my very limited experience and being new to the illness myself, I am finding that myeloma is so specific to each individual. Good luck anyway.

Regards,

Robert

[robert0439Participant]

Hello David,

Thanks for your positive comments and may I say that I admire the manner in which you are managing your issue by taking one day at a time and not thinking too far ahead.

Wishing you continued good luck.

Regards,

Robert

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