[tallulah55Participant]

Hi, I’m Nicki and this happy pic on our profile was taken 2 years ago with my husband Kevin. We were relatively carefree then – he was 4 years free of kidney cancer (both kidneys!) and we were starting to look to the future with more certainty. Then a week before Christmas 2012 when we should have been celebrating 5 years survival of this Kevin’s routine diabetic blood tests show high levels of calcium. As I used to work in an NHS pathology lab testing for cancer cells I automatically thought that the kidney cancer had spread to the bones ( that would have been a very difficult diagnosis) but he was eventually diagnosed with a rare sort of lymphoma, Waldenstroms Macroglobulinaemia – it gets to roll off the tongue! But he was very well and I guess in shock and denial to some degree and it can be a slow growing indolent cancer.
However as it often is apparently the diagnosis was wrong, the IgM paraprotein actually that characterises WM was in fact a rare form of multiple myeloma -a whole new ball game! Less than .5% of all myelomas apparently. We had become very pally with the WM forum and now felt we should look for a new ’club’ as clearly we no longer belonged in that one despite the two diseases being very similar. So here we are and life has taken a very course over the last few months. Kevin’s paraproteien of c. 30 suddenly rose to 57 when he contracted pneumonia following catching flu on a long haul flight and he was very ill, very anaemic and with rocketing levels of calcium. No bone pain or lesions and remarkably – no damage to his remaining .8 of his single kidney. You have to be positive.!
10 days in UCHL under the WM expert and now back under the excellent care of Prof. G Jackson at the NCCC at The Freeman in Newcastle. Kevin is on his third cycle of CTD, the paraprotein is down to 9 and we are hoping there will be one more cycle before seriously considering ASCT. So pleased to have eventually discovered this site – my bedtime ipad activity has been reading the posts over the last week or so instead of ipad shopping in bed and I’ve picked up so much that shows we’re not alone, even though this is a club none of us want to belong to I guess.
I’ll be posting more over the next few days but thought I should introduce us. Kevin is probably very sensible – he only looks at info when really necessary, I, on the other hand, have to know everything going. I especially find the Myeloma Matters newsletters informative and also like the more International Myeloma Beacon. Anyhow, internet shopping awaits – and then onto reading more about ASCT.

[dickbParticipant]

Hi there, sorry you’ve had to join us but at least you are better informed than many and gone through the trauma of a cancer diagnosis before. My wife tends to read and research everything whereas I don’t worry about things I can’t change. She thinks I’m just a bimbler but I like to think life is too short – especially now – to worry about everything.

I hope you find us helpful, there are a lot of ‘experts’ on the site who would rather not be and a lot who have done well post SCT so please keep us informed and join in.

Richard

[tallulah55Participant]

Hi Richard

Thank you for your welcome and for your reply. I think, like everything else in a partnership, you both have complimentary characteristics and I think my husband is absolutely right in thinking about the MM only when he really needs to. I certainly only mention it when he raises the subject of it even though I admit (as probably a typical worried female!)it is virtually always in my mind. However I’m very positive and I think knowledge and insight is empowering even in this disease.
It gave us great pleasure when the consultant told my husband that when he started taking dex he would have to start injecting insulin for his diabestes. Knowing what added stress this would be we thought ‘no way’ and Kevin embarked on a high protein, low carb diet on the dex days and we won!Not only that it seems to have helped to raise albumin levels a bit and helped him to lose a bit of weight. I also found low carb bread mixes (now that’s an experience)and low carb pasta but it’s great to have some sort of control.
I’ve already read a lot of the posts and it is a huge comfort to have the expertise and solidarity from others on this site and I enjoy your posts I have to say.I have to say though that the trauma of solid cancers, huge shock and worry as they were, pales into insignificance compared with blood cancers that are always going to rear their ugly heads again and again – that’s the toughie.Ironically we adjusted life after the first cancers and actually enjoyed life more, appreciated the good things in life more and were more content in our marriage I would say. This one’s going to be tougher but already we try to ensure we enjoy the days when K is feeling good,and give in a bit to being home and staying comfortable when he’s feeling rough. We’re lucky we both work at home a lot and live in the most isolated county in England – there’s always positives!

[johnandjunediamondParticipant]

welcome nikki & kev,
sorry but im cluless ref:- IGM myeloma so cant help you there,you will find that you will get less reply’s when you have a rare & or complicated form of the desease or related condition,please dont be offended it’s just that people tend not to reply if they feel they cannot directly contribute in a positive way.
but you will find we are all high grade moral boosters when you need it.
best regard’s john.

[CarolsymonsParticipant]

Hi Nicki…welcome!

I can’t help you with the Igm myeloma as I am iga lambda light chain which is also a more rare form of the disease. However I can give you hope. I am 15 days post stem cell transplant (SCT)and doing very well I feel. I am hoping for a long remission, but of course nothing is guaranteed in this process. I can say though if SCT is offered to Kevin (although his kidney and diabetic issues may limit this) there is no need to be afraid of the procedure. Fingers crossed for myself that I will achieve a long remission and return to my family in Australia this year.

Carol

[tallulah55Participant]

Thank you John and June for your reply. You are right of course – if Kevin didn’t have a rare disease then there would be many others with it on the forum – indeed there are very few even on the bigger, international, Myeloma Beacon forum. IgM is just one of four types of ‘Igs’ – in myeloma the most frequent ones are IgA and IgG apparently. IgE is rare, IgM is very rare and IgD is v v rare! IgM is the the same paraprotein as found in WM hence the confusion. The fortunate thing though is that treatments seem to be the same for all types, the unfortunate thing is that the very few studies reported of IgM cases are the ones that say the prognosis is worse etc when really the very low numbers can’t predict prognosis with any accuracy.So we ignore them!

The one thing I am learning though is how individual this disease is and that variation has nothing to do with which ‘Ig’ you have – if it wasn’t so terrible I suppose it would be fascinating to hear others’ journeys and how they vary. I think we are fortunate though that across the world there is so much research being done more into novel, treatments that are more targeted to individual types and genetics.

Yes you definitely are morale boosters, thank you, there is so much comfort in forums such as this and I feel I know some already just from their posts and profiles, so thank you. Nicki

[tallulah55Participant]

Hi Carol

Thank you for your very warm welcome and it must be a welcome relief for you to be home! I have been reading your posts with a great deal of interest in the last days, to hear about your journey so far and how brilliantly you seem to be progressing! It must be a huge relief to be home but I suspect you will worry if you get the slightest temp rise or eat anything a bit unusual. You have several months to go until the summer so hopefully you will be fully fit to travel. I do think you have to have goals and plans for the future even if you have to be aware they can go wrong and we are hoping to be travelling again next winter. Remarkably Kevin has been told he is fit enough for SCT, his solo kidney works better than ever and he has always had the blood pressure of a 20 year old, better then mine-:( I suppose the big decision re SCT is when your initial treatment works very well you wonder whether SCT is the right route but as K is nearly 66 he knows that his days are numbered for the procedure so is adamant that is what he wants to do.
I am wondering which hospital you had the SCT at and how you feel your care was there?You must be so relieved that you are over the worst, I wish you well Carol. Regards,and thank you for your warm welcome, Nicki

[CarolsymonsParticipant]

Hi Nicki

Yes SCT is a big decision, but I saw it as a gamble but one worth taking if you can be in remission and drug free for a few years. I know a patient at Ealing Hospital who managed 8 years from his first transplant, now wouldn’t that be fantastic? Really I had no choice but to do the SCT. 3 weeks after finishing CDT my paraprotein was back and lambda light chains increasing, so I was already slipping out of remission. I know some people have the luxury of finishing CDT then staying in remission, but not me. Also I really, really, really want to go home to Australia, but with dual citizenship knew my best care would be here in London. I am with Hammersmith Hospital West London and I cannot speak highly enough of the institution. The staff are inspirational, I felt blessed to be in their care.

Attached is a photo of my newest grand daughter who I have never seen- just 5 months old and named Violet, my second name and my grand mother’s name….how sweet is that? You can see how much I am missing by being in London.

Carol

[CarolsymonsParticipant]

Try again!

[webteamKeymaster]

Hi Carol

I noticed you had a problem uploading a photo. I’ve increased the maximum size allowed for posting images. If you want to try again it should work now. When you hit the Submit button please be patient as the file will take a short while to transfer, sometimes up to a minute depending on your internet connection speed.

Regards
Stuart

[CarolsymonsParticipant]

Try try again!

[CarolsymonsParticipant]

Thanks Stuart

Carol

[tallulah55Participant]

Thank you for your thoughts on SCTs and (finally!) for the photo of your grand-daughter- oh she looks so adorable and that hair! I can see why you want to go round the world to see her. We have 2 small grand-daughters the other  end of the country who we don’t see very often and had hoped to have them at Christmas. However the consultant advised against it due to infection risks. That was very hard, children are such a joy aren’t they and are a real panacea when you’re down. We have 5 sons between us, none of them nearby regrettably nearby and a son and eldest grand-daughter in New Zealand. We’re hoping to start going abroad again next year and all going well to spend the winter in Dubail where medical support is excellent. Wondering what vaccinations you will need for Oz and how soon after the SCT you can have them?

I’m sure your plans will speed you now on the way to recovery.

best wishes

Nicki

[CarolsymonsParticipant]

Isn’t Violet just beautiful? I haven’t enquired about immunisations. I think they expect you to re-do all the baby ones but I don’t know when. I am seeing the consultant next Wednesday so must remember to ask.

Carol

[tallulah55Participant]

Oh she is just so gorgeous! Those eyes and all that hair – you must ache to meet her! Re vaccinations – I gleaned quite a lot from the WM site and I believe you are ok unless you have to have live vaccines which cannot be done for a while, but as you say the consultant will tell you all. And then there is the big area of travel insurance to contend with – will all be so worth it though I am sure.

I hope you continue to recover over the weekend. We live right on (well a field away) on the North Northumberland coast and it has been a perfect springlike day today so I have been potting up lots of bulbs to bring into the house to cheer Kevin up with their yellow and purple colours, he’s been a little low this week with the increasing lethargy and wobbly legs that the treatment seems to be doing to him. we’re back to the consultant on Tuesday and i’m keeping fingers crossed that paraprotein is down to 5 or 6.

Let’s hope we all have some sunshine this weekend

Nicki

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