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jmsmyth 9 years, 10 months ago.
I’m maybe only a newcomer to the site but not to Myeloma. My name is Mike and I was finally diagnosed in Jan 2007 with Lambda Light Chain Myeloma at 41 after presenting with kidney failure that has settled to around 30%. Signed up for the Myeloma IX trial and the computer chose me Chemo via a a Hickman line from a hand grenade in my pocket. Anti-sickness tablets were great on the chemo but the steroids affected my sense of taste and gave me the need to eat. I became a monster in the curry house, there were never any leftovers and I had to be restrained from licking the plates. Extra chillies were essential and looking back I would have had a ball at the Chilli Festival.
Counts came down and had Stem Cells harvested in The Royal Marsden, Sutton, nearly in one session but through the Hickman line instead of two HUGE needles, just the one and I still have the scar. D-Day 2007 I went in for a Stem Cell Transplant in Bud Flanagan ward. Gave me high dose Melphalan and said it would hit me for six. I was told the same with the Chemo and if beer, chillies and anti-sickness tablets were “hitting me for six” then bring it on!
St Hellier and The Marsden need to recalibrate their sixes, one’s in Metric Millimetres and the other so far up the Imperial Scale I’m sure I saw Red Rum passing through the last leg of the final furlong. Six? More like sixty six! Mucositis wasn’t on the menu and I definitely didn’t order it. Oral Morphine and Mucositis don’t mix but if the NHS can get a happy medium between the two they would have obesity licked.
A long, long time recovering and the clinical depression was awful. Reaching for a drink (squash) was hard and often took a couple of hours, still don’t understand that bit. I remember the first alcoholic drink post transplant, a G&T after mowing 90 sq metres of grass with a push mower that is now redundant as petrol power is the future. The result has been nearly 7 years in remission.
Today I had my 3 monthly tests and all seems ok renal and bloods, I came away pleased with the result but with a feeling of self loathing. I listened to two older guys talking about their Myeloma (as you don’t want to but do) and almost completely ignored another couple I spent ages last time talking to.
My time in The Marsden taught me one thing, that was not to feel sorry for myself after looking around the ward and canteen at people who were suffering more than I and dying. Here I am ignoring people I have or can share my experiences with, what the hell is wrong with me, complacency?
Mike
Hi there. Don’t think your complacent, just blasae maybe. Perhaps having lived with MM for a number of years makes it part of normal life. I suppose it’s the same for people in various walks of life – ex pats who live abroad and see how the new ex pats look at their new surroundings in wonder or forces personnel who have been at a particular posting for a while and see how the new guys react.
Any, nice of you to join us, hope you find the site helpful.
Great post Mike, very funny. Thanks for sharing your journey. Hope you stay in remission for another 7 years at least.
Hello Richard,
I hadn’t looked at it that way, perhaps you’re right. The only contact I have with other patients is at St.Hellier and because I go every 3 months I don’t often see the same people as they might be on 2 monthly visits. Come to think of it I only saw one member of staff yesterday that was there when I had my treatment, Nicky the trial co-ordinator!
I joined the site a while ago and did read some posts but I was reminded of the early days of diagnosis when we were reading up on all the information available but had to stop as it was giving us more to worry about. Maybe yesterday I was burying my head in the sand by not talking to the others, not wanting to hear something I could start worrying about. One recurring memory I have is a young chap in the Marsden who came in for a second SCT and said that they only last up to 7 years which is where I am now.
This might make you laugh, I had to Google ‘SCT’ after reading through some of your posts as I sat staring at at it wondering if it was some new treatment! Then again, I do remember having to ask what ‘DOB’ was on a form at college, what a muppet.
Mike
Hi Mike, long may your remission continue and welcome. Now you’re here can I pick your brains a bit please? I have lambda LC with kidney failure (at 51yrs)- took a year to get to SCT with kidneys at 26ish but now they’re 32. They are heavily correlated with light chains numbers – 120 LC kidneys 14% 60 LC kidneys 26ish hit the dizzy heights of 32 after SCT with LC of 7. You mention your kidneys are 30ish can I ask please have they declined over the 7yr remission or remained the same and do you follow a kidney friendly diet or do anything different to try and preserve them? I ask because I have never been seen by a renal team only my haematologist who says there is no need as it is a multi disciplinary team, he tells me I do not need to follow/do anything differently except drink my 3 ltrs (the wonder drug of this day and age!) but when I google (which is often) it seems to point to everyone with low kidney function to eat differently etc to preserve them? I exercise an awful lot also ( which I think stops me being on anti depressants) but am told by the heamatolgist this is fine. As you are an hold hand at this (and I hope I can be an old hand at this in the future!) what are your experiences please re kidney health?
Rebecca
Hi Rebecca,
I usually see two specialists when I attend St.Hellier, any one of the Haemotology team and one of the Nephrologists, Dr. David Macanjuola. We were discussing my creatinine level yesterday and over the past two years it has been trending up slightly but has been fairly consistent since the SCT between 180-210. I have just tried viewing the results online to see the latest results and cannot gain access.
I follow no special diet, I just eat and drink normally including alcohol as I did before diagnosis. I did see a dietician back in 2007 but if I had to follow her suggestions I probably would have hung myself by now, in fact looking back I remember thinking she was an Anorexia patient when she walked in. When I first saw Dr Macanjuola some years back he asked if I was drinking plenty of water so I told him I was trying to drink over 3 litres a day which I was struggling with, he just laughed and said I was at risk of drowning! He suggested I drink when I felt thirsty and not try to beat the 3 litres and I have done so ever since.
I think (hope?) the slight trend upwards in the creatinine may be due to the blood pressure tablets, I was also suffering with some oedema on my legs and take a tablet for that too.
Mike
Thanks for that Mike – is the BP/oedema considered to be an effect of poor kidneys as I have read how poor kidneys can affect heart, BP etc but even in kidney failure my BP was totally normal but don’t know how long you have to have bad kidneys before effects start to show? that’s why I exercise a lot along with the fact that it keeps me sane. I think I worry more about kidneys than MM bit it’s hard to tell! a tough call. Thanx
Rebecca
That’s a question I have never considered, I will have to ask next time I go. The blood pressure tablets were prescribed by my GP on the request of Dr.Macanjuola a couple of years ago to relieve pressure on the kidneys if I remember correctly. My weight and fitness probably does not help as I’m around 18.5st. I was playing a bit of paintball (yes, big kid) before the BP started and was probably a bit fitter than I am now and a bit lighter too.
Mike
Mike
Just wanted to say thanks for the post. My partner Colin was diagnosed in 2011, had sct in November 2012 and has been in complete remission ever since. But I feel nervy as time goes on, as we were told the average remission is 18 months…..it’s always good to hear of someone who gets a long remission. Long may it continue for you. It’s given me heart and I’m trying not to worry so much on Colin’s behalf!
Best wishes
Vicki and colin
Hell Vicki,
Let’s hope Colin’s remission continues and the treatments also keep improving as they have over the years. I was told the average age for MM was 70 in 2007 and to have it at my age put me in a very small minority of sufferers. They took enough stem cells at the harvest for another transplant and the way things are going they might go past the sell by date!
I signed up for the Myeloma IX Trial as I decided that if it was going to get me then hopefully someone else might benefit from the information and if it saved or prolonged at least one life it was worthwhile. I was expecting to have a regular bone marrow biopsy and bone trephine plus all manner of tests but it was just blood, urine and a quality of life form every couple of months. Nicky told me last week that the trial has now ended and there will be a follow up quality of life survey but it looks like I will miss the catchment dates. What a relief, those tick boxes on the forms were very taxing!
Where did Colin have his SCT?
Mike
Hi mike ! After reading all your post on MM u were diagnosed, the same month,the same year the same age as me. My kidneys and renal , and bones were damaged. I ad my own stems cells put bk. And I to am in complete remission since I ad transplant sept 2007. I take 1 day at a time now. Gud luck to you for the future..
Hi Mike and welcome
I think may be what you do not realise is your good news of lasting seven years,if you look at statistics when you are a new MM it’s depressing,and some one like you comes along and says 7 years,you give the newbies so much hope. The waiting room is so small at the Marsden,bit like sardines in a tin,you cannot help but talk or listen !!!!!.
I liked the Marsden very much,it’s worth a 3 hour journey up there.
I would say to you be proud at how much remission you have achieved,give the newbies hope!!?, because it’s hope that keeps you going!let’s hope you have many more years. Eve
Hi Val,
That’s eerie, too many sames! Where do you live, it might be the water? I was told that to have Myeloma at my age put me in a very small group of sufferers around 2-3% of the total and I was surprised to see an under 50’s group on here with so many members. How bad is your bone damage? Mine seems to be confined to my skull from the X-Rays and I swear blind that is why I had to buy a new crash helmet from a different manufacturer as the shape of my head has changed but nobody believes me.
Mike
Hi Eve,
Well if me posting on here helps even one person it’s worth my while doing so, 6th July was D-Day and the day I went in for my STC so as that has passed I’m past the 7 year mark.
I liked the Marsden too but had a couple of strange experiences there. After 3 weeks in and one day home I wanted to go back! I guess that is what some call being institutionalised and I did end up back in there the next day for some tests as I did not feel too good. Also, going back for check ups I was fine until we turned into the road and I started to get very stressed and anxious not wanting to go in.
I have been lucky compared with others and attribute most of that to early diagnosis. That came about due to Trisha Goddard, I found myself sat on the settee watching her awful show asking myself why I had no energy and would rather be watching TV than being out in my workshop. A trip to the doctors and a routine blood test had me in Chertsey Hospital the next day with kidney failure, from there I was referred to St.Hellier and eventually diagnosed. Trisha Goddard, who would have believed it?
Where do you live that the Marsden is a 3hr Journey?
Mike
Hiya mike! I come from Burnley Lancashire .. I had broken bones without knowing wen I got diagnosed (ribs, collar bone,) also the top of my spine fused together , so I’ve lost an inch in height . I was only 5 ft anyway lol. I’m 4 /11 now.. My kidneys were tht bad I couldn’t have my sisters stems even tho she was a match for me.. I was really really poorly for a full year b4 they found out what was wrong . My cousin who is jst 50 has been diagnosed with the same thing. Now thts very bizarre…I go to the Christi hospital in Manchester every 3 months. Friend of mine has done over ten years now, she was only 40 at the tym to.. Anyway we are all ere to tell the tale.
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