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Share Your Experiences: Your Stories

This is a chance to share your stories and so others will realise they are not alone in going through similar experiences

The same is also true for friends and relatives who also might not have anyone to share their feelings about living and caring for someone with Amyloidosis.

You can write a novel or short paragraphs – it is not the length that is important, but your hopes, fears and experiences that others will understand, empathise with and hopefully help them with their situation.

Your Experiences

This is probably the most important page on this website. This is the place where people can share their experiences, concerns and thoughts on Amyloidosis. As a rare disease it is quite easy for you to think you are on your own and there is no one going through the same things you are.

David's Story
 

I first noticed there was something wrong with me in March 2006 – three years ago aged 59.   The symptoms were tiredness, weakness, weary legs, swollen ankles and general malaise.   I also noticed a lot of froth in the toilet when I passed water.   I have been incredibly active all my life – there was no mountain I could not climb and the prospect of reduced activity worried me.

 

The swollen ankles first showed a couple of years earlier but I ignored them as par for the age.   I went to see my GP who immediately recognised some sort of renal problem and referred me to a specialist.   Initially this was a General Consultant who did a full medical.   His diagnosis was indeed that there was a renal problem and I was subsequently referred to a Nephrologist.

 

After a few specialist blood tests including the free Light Chain test and a kidney biopsy, I was diagnosed with Amyloidosis.   This was in July 2006.   We contacted the NAC at the Royal Free Hospital, London and arranged for a consultation.   My first visit was in September 2006 when a full survey was carried out including Echo-cardiograph, ECG etc and SAP scan.   I returned to Leicester and had a bone biopsy in my thigh-bone which was one of the most painful things I’ve experienced but for a very short time.

 

The tests confirmed AL-Amyloidosis with moderate deposits on my kidneys and a heavy deposit on my spleen.   To our great relief, there was no Myeloma.   No mention was made of my heart being affected.   The treatment recommended was a 6 x 4 week course of CDT Chemotherapy.

 

I went back to The Midlands to have the medication administered and attended the clinic under a Haematologist.   The CDT was self-administered orally but I attended every 4 weeks for blood tests.   The CDT was backed up by anti-viral, anti-bacterial etc drugs.   The course commenced in October 2006.   Unfortunately during this time I caught a simple bad cold which caused me much grief.   I had not had a flu jab and I would recommend everyone has this.   It must be in agreement with your Haematologist and GP.

 

I don’t recall many side effects other than things began to taste peculiar.   Bread, potatoes and meat were particularly unpalatable – vegetables, salads and fruit were ok.   I had to chew everything very well before being able to swallow and this continues today.

 

I continued to feel generally tired and found my normal physical activity severely impaired.   I am a keen golfer and I play Badminton and Tennis and enjoyed walking.   To my great disappointment, I found myself unable to get round the golf course even using a buggy.   I have not played since Oct 2006.   I had no strength in my arms and was only able to play a few points on the badminton court.   This did not happen straight away.   The tiredness before diagnosis was having its toll on my activities anyway and I can only say that gradually, over the three years, I had to curb all my physical activities.

 

I returned to the NAC for another scan in March 2007 and they confirmed the kidney and spleen deposits had not got any worse - which was a success - but they found a light deposit on my heart.   This may have been missed on the first visit, so they were not too concerned and didn’t rate my case as serious.   The heart wall thickness reading was 15mm which is a light load.   This has not varied much in subsequent visits.

 

The recommendation from the March 2007 visit was to do nothing for 6 months and go back and see them in Sept 2007.   I returned in Sept 2007 and they confirmed that again there had been no further change.   They would have liked to have seen an improvement and so recommended a change in cocktail, this time onto Melphalan and Dexamethasone.   This was also a 6 x 4 week course and this took me to the end of March 2008.   However before I started the Melphalan, the NAC recommended a Stem Cell Harvest to provide a store of cells for future possible Stem Cell Transplant.   Evidently, Melphalan ruins your ability to give up cells in a harvest and the procedure has to be carried out before the Melphalan.   This was carried out at Leicester Royal and I lay in bed for two days while the collection took place.   I now have a freezer reference location and certificate defining exactly where my cells are stored.

 

The Melphalan & Dex did not have too many side effects and I seemed to tolerate it very well.   In fact during the days I took the steroid, I was on a high, hyperactive and talking constantly.   My wife called it “steroid-speak”.    The end of the course coincided with a return to the NAC where, again, there was a recommendation of 6 months rest until the next visit in Sept 2008.   My taste buds continued to be upset, but they appeared to be returning towards normality during the rest period.

 

The visit to the NAC in Sept 2008 found no further deterioration but the tiredness and weary legs were now a little more noticeable.  I had very little strength in my legs and needed the banister to get up the stairs.   If I knelt down on the ground, there was not enough strength in my legs to get up and I had to haul myself up with support from my arms.   I had difficulty getting the screw tops off jars as there was a diminished strength in my hands.

 

The Sept 2008 visit to the NAC recommended a 4 x 3 week course of Velcade and this commenced in Nov 2008 and finished in Jan 2009.   This was administered IV in the day care unit of the clinic and I had to attend on Mondays and Thursdays for 2 weeks out of the three.   The third week was a rest week.   I continued to work throughout the treatment, although I missed on the actual treatment days.   My wife came with me each time and drove home after the medication had been administered.

 

I seemed to tolerate the Velcade very well initially, although the effect seemed to accumulate and by the end of the treatment, I was unable to attend work on the day after the treatment as well.   I described my condition as feeling “woozy” and I hope everyone understands what I mean.   There were also terrible bowel upsets leading to diarrhoea and constipation.   I needed to stay near my own bathroom.   Once we got the metrics of the movements, we coped quite well using Movicol and Codeine Phosphate.   I suffered from Postural Hypo-tension and if I stood up too quickly, I’d become very dizzy.   On two occasions I collapsed onto the floor.   My blood pressure would go from 115/70 lying down to 75/45 standing up.   Not good!!

 

Finally, I visited the NAC in March 2009 and they confirmed that there had been little or no improvement as a result of the Velcade.   They indicated that the full value of the medication may not necessarily be evident so soon and I have hopes that things will get better.   I have another visit booked for September 2009.

 

In the meanwhile I am undertaking a regime of exercises at the local gym.   I manage a couple of lengths swimming and 20 mins cycling on alternate weeks.   I try to walk as far as I can but my weariness is still there.   There is a problem with oedema and gravity means my legs swell badly.   This becomes very uncomfortable but again, we control it with a combination of Furosemide and Metolazone.   We have recently returned from Italy and I managed to fly there.   The journey was 2½ hours and I wore flight stockings (up to the thighs) and these made the journey reasonably comfortable.

 

I notice my weight increasing as water builds up and when it gets over 12 stones, I take an increased dose of the diuretics.   This leads to a water loss and weight loss of 7lbs in 4 days.   Once I am back down to 11st 3lb, I am comfortable and back off on the diuretic.   My pre-Amyl weight was 14st 10lb.   I was 5ft 11in pre Amyl and am now 5ft 9½in.

 

I am now 62-years old, still officially working, but taking full time medical leave since March this year until my official retirement date on 15th October 2009 (aged 63).   One point that both my Nephrologist and Haematologist made was that to continue full time employment and hence to continue exposing oneself to the stresses and adrenalin rushes of work, does not give one’s body a chance to recover and react correctly to medication.   I decided this was very meaning full and since being on medical leave I am much more relaxed and feel better for it.   However the underlying problem has not gone away.

 

There was talk during my March 2009 visit to the NAC that they may recommend a Stem Cell Transplant Lite.   Exactly what this is I’m not sure but it seems to be a half-way house, the full procedure having an unacceptably high TMR – about 33% at my age.   I am certainly up for this and will let you know how I go.

John Butterworth has written a poem about his experiences. His unique take on his condition is a revealing read.
 
I cant sleep-it’s the leg cramps-no rest, Makes me grumpy next day-not the best!
 
I cant eat - no appetite for food ,‘Cant chew chops or steak - no good!
 
Its got to be soup, curries or stews, No wonder I m skinny & easy to bruise!
 
I’ve no feeling in my hands or feet, My nervous system’s done me up a treat!
 
I cant wash the car or cut the grass , Paint & decorate -- I’ll have to pass!
 
I cant drive either or get very far , Got to stay local-- a real Norfolk yokel !
 
I cant play with Jacob- the light of my life, Have to rely on Jean - what a wife!
 
She’s been ever so good & as things get worse, She’ll be my lifeline my lovely nurse!
 
Seeing Nana with Jacob fills me with pleasure, They’re great together- such a treasure
 
I hope to solve this amyloid mystery & show to Jacob in the BUTTY history!
 
That his grandad did a wee bit more , Than sit in his big chair by the door!
 
My throats very dry & I sound so coarse, I think they’d shoot me if I were a horse!
 
I lose count of the number of pills,but I take a lot to cure my ills !
The genetic tests for all these things should stop it passing to my offsprings!
 
My genes have let me keep my hair, hope they don’t put me in a wheelchair!
 
Although my legs are short & bandy, I wish I could stand up- that would be handy!
 
I don’t feel envy for the rich and the wealthy, I,d sooner be poor & skint but healthy!
 
Its been over a year since my diagnosis of this horrible amyloidosis !
I cant go on holiday-- so full of fear , Getting caught short with the the diarrhoea!
 
No planes trains or automobiles , If you’ve had the runs you know how it feels!
 
No round of golf, or the driving range, For an obsessive sportsman it feels so strange!
 
But all’s not lost - though there’s no cure I’m hanging around for a little while more!
 
As long as I can have an odd bet & watch the sport on my HD telly,
Got to see the reds win the prem league yet, So St Peter- no! not on your Nellie!
 
The pearly gates will have to wait for me, Cos there’s a bit of life left in old J-B!!!

 
Ann's story, which also offers some lifestyle advice and suggested alternative medicines
 

"I was diagnosed with AL Amyloidosis affecting my kidneys and spleen in December 2006 when I was 55 years old.

 

All my life I had been fit and active, both at work and leisure. My diet has always been good, plenty of fresh fruit and vegetables and home cooking, very few sweets, biscuits or cake, minimum of alcohol and I never smoked.

 

I live on a farm in Northern Ireland where the air is clean and fresh. From an environmental aspect there is no reason for me to be unwell.

 

With AL Amyloidosis there are symptoms that appear years before anyone is aware that anything is seriously wrong. I started to develop carpel tunnel syndrome in my right hand some five years before diagnosis.

 

Then there was the spontaneous bruising in my hands and feet if I gripped something too tightly or trod on a stone. That had been happening for quite a few years. Towards the end of 2005 I started to feel tired and wasn’t sleeping well. Then in April 2006 I woke one morning with swollen legs, feet and ankles. My GP did tests. He found I had high cholesterol, 10 to be precise!

 

He therefore put me on statins to reduce the cholesterol and bumetanide to reduce the fluid retention. He did more and more tests but came up with nothing. His words were, “Whatever it is, it’s not textbook!”

 

He sent me to a general consultant who found I had protein in my urine and very quickly sent me to a nephrologist. By now I was tired nearly all the time and I also noticed that my tongue felt too big for my mouth (macroglossia).

 

I had a kidney biopsy in December that showed Amyloidosis, and a blood test confirming it to be AL type. In January I saw the haematologist who confirmed that my lambda light chains were the ones out of range and started treatment with VAD chemotherapy in February. I had my first visit to the National Amyloidosis Centre in London in March.

 

The SAP scan showed the extent of the amyloid load to be in kidneys and spleen. One cycle of VAD had brought my light chains back into normal range so the NAC suggested that three cycles in total should be sufficient. So I finished the chemo in May 2007 by which time I no longer had carpel tunnel syndrome or macroglossia.

 

Since then I have visited the NAC every six months. The amyloid load has not changed at all in two years. Proteinurea has reduced a bit, fluid retention remains the same and the lambda light chains were starting to increase again.

 

So, they decided that another course of chemotherapy was indicated. I began Velcade and Dexamethasone in November 2008. The NAC have recommended six cycles. At time of writing I have almost completed this and my lambda light chains are now well within normal range. It will be interesting to see how long I remain in remission this time.

 

Generally speaking, when not on chemo, I have been able to live a full life although much less physically active than previously. I am easily tired, if I talk too much I get hoarse, blood vessels still pop in my hands and feet, fluid retention is quite bad and I have lost a great deal of my muscle bulk. On the plus side I have an excellent appetite and there is nothing wrong with my brain. Life could be a lot worse and I am truly thankful for what I have."

 

 Here are some things I feel have helped me:

·         Eat a healthy diet, plenty of fresh fruit and vegetables and lay off the junk food.

·         Take as much exercise as you are able to. I walk my two dogs every day even when I don’t want to. I always feel better for it.

·         Keep mentally active. Get on with work. Keep up with your hobbies.

·         Talk to people about your condition and how you feel. There is nothing worse than bottling it all up as it will eat away at you. Family and friends can be very supportive.

·         Never loose Faith, whatever you call your God, keep praying.

·         Remember, the glass in half full, not half empty. A positive attitude will do more good for you than many medicines. And there is plenty to be positive about. Research is always coming up with new and better treatments for us.

 

Here is a list of some alternative medicines I have tried: (If you intend to take alternative medicines, first check them out with your consultant/s to make sure they will not be harmful to organ function or interfere with the correct working of your prescribed medications.)

 

·         Bromelain – from  pineapples – it is supposed to break down protein. I took it for 6 months to see if it would have any effect on my amyloid load. It had no effect at all so I stopped taking it.

·         Magnesium Phosphate salts – homeopathic salts – I have occasionally experienced killer cramps in my legs, feet and hands. Magnesium Phosphate salts dissolved on the tongue very quickly relieve these. I always carry them with me, just in case.

·         Co Enzyme Q 10 – Statins deplete this natural enzyme in the body. It is beneficial to the heart, increases energy levels and also keeps gum disease in check.

·         Aloe Vera Juice – a tonic and helps the digestion.

·         Garlic and Thyme tablets – builds up immunity.

·         Bee Pollen tablets – full of natural goodness and rich in vitamins.

 

The link below is to the Edinburgh University Renal Unit. I have found this site invaluable in explaining the many blood and urine tests done to assess kidney function.

 

http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/kidneytests.html

 

Lynda's Story

 

I was diagnoses with Systemic Amyloidosis due to Fibrinogen Aa chain valine 526 on September 20th 2007.


I reached this point after complaining of back pain and being referred to a rheumatologist at the Queen Alexandra Hospital, Portsmouth.

Tests shower the back pain was a result of wear and tear but also that I had too much blood and protein in my urine. I was therefore referred to the Wessex Renal Unit.

 

There I was told that I would need further tests but to try not to worry as the previous tests had ruled out the two most serious causes of nephrotic syndrome. I then went to see a haematologist. I was told I needed to have a bone marrow test and a kidney biopsy.

 

Never having been in hospital before, except for the delivery of our two daughters, I was scared of the procedures but knew I had to have them. The bone marrow test was done in the heamatology unit as a day procedure and though a bit uncomfortable caused me no distress.

 

The biopsy was uncomfortable but again no big deal. Unfortunately I did not get much support from the staff on that visit and got very upset by the lack of care; being put in a mixed ward without warning, no meals ordered, poor privacy issues on the ward and in the toilet area.

 

I complained when I returned home and was sent an apology and assurances that new guidelines would be given to the staff as a result of my suggestions. I would have felt much better if my husband could have stayed with me throughout the day until I was settled in the ward after the procedure and would advise anyone else in this situation to have someone with them.

I went back to the hospital for the results and the day after started writing notes about my situation.

'On Thursday August 9th 2007 I was told by the haematologist that I had amyloid A fibres in my kidneys.   For weeks I have been concerned that all the tests I have been having would result in a serious diagnosis. Even though I had this suspicion the information given to me by the heamatologist left me in shock. To be told that you have an incurable condition which if left untreated can result in multiple organ failure in quite difficult to deal with.

 

He told me that twenty years ago there was no treatment but now there is and the Royal Free Hospital in London is the specialist centre where further tests need to be carried out so that a management plan can be devised.
On leaving the hospital I felt numb, it is almost as if your mind goes into suspended animation as it is not able to cope with the information.

 

Slowly my brain started working again but because you have only part of the picture you can't move forward.  One minute you are thinking positively, feeling grateful to have the diagnosis before your organs have deteriorated.  In the next minute you are asking questions about what the future holds and how much future you have. What side effects will the treatment have?

 

How will it impact on my quality of life? Then you pull yourself up short and tell yourself off. Asking too many questions that you don't have the answers to is futile and can only lead to more anxiety.

 

Instead, it is much better to think about what you can do today and make the most of every minute. It is a good resolution but not always easy to sustain as I have discovered from other experiences in my life. When it does work I feel fine. It is no use letting this diagnosis spoil these summer days.


My life is very good today and so I will make the most of it. The gremlins will creep back in now and again but keeping as active and busy as I am able helps to keep them at bay. I will get more answers as time goes by and I will try to be patient.


I was born on a Wednesday but this Wednesday's Child is not full of woe!'

Sharing this news with those I love and who love me is difficult. Past experience has taught me that it is sometimes more difficult to be the bystander than the sufferer.


Ken's Story
 

Ken from London, 58, diagnosed Dec 2006 Al Amyloidsis, kidney, spleen & heart.

 

I doubt if anyone did not go through the same emotions when after the various tests and biopsies the diagnosis of 'you have a rare blood disorder called amyloidosis' hit like a train.

 

More disturbingly the family rushed off to ‘Google it’ and were faced with a series of ‘doom & gloom’ and ‘skull & crossbones’ prognoses.

 

My wife didn't let me see the first letter that contained a rather poor survival outlook. However, once I was under the supervision of the team at NAC and the treatment options were outlined and discussed with my haematologist, we were all able to slowly adjust to the situation and carry on with life and treatment.

 

It is all very daunting and everybody reacts differently. The treatments are not very pleasant and there is not always a significant response. I did five cycles of CTD.  I didn't have to spend much time at the hospital as its an oral regime, but it had a slow cumulative effect and by the end of the course I was feeling pretty rough, but after a few weeks slowly felt able to face the world again.

 

Unfortunately the response did not last long and I had to go onto peritoneal kidney dialysis and then have four cycles of Velcade with melphalan & dexamethasone.

 

Another difficult time followed, but the response was good and here I am nearly a year after that coping well with the dialysis and spending as much time as possible on holiday!

 

Most of the symptoms brought on by the treatment have cleared up and, in the words of my renal Professor, better 80% quality of life than the alternative.........

 

The important thing is to listen to your body, if you need a day off then take it easy; if you feel unwell try and see what's causing it. Sometimes its quite a simple remedy to get you back up and running again, in my case the odd iron infusion picks me up, and remember stay in charge and dare I say it, 'positive'. 

 

Remember, don't forget your carer & family without whom life would be so much less.

 

I did a fear of flying course many years ago and now fly again regularly, the instructor told me to think of the good flights not the occasional rougher ones, its the same with amyloidosis, enjoy the good days and forget the not so good ones.

 

There is a life with and after amyloidosis, and, given the research going on right now, I'm optimistic there will be a cure very soon.

 

Jenny’s story

 

Jenny, 60, diagnosed December 2007. AL Amyloidosis; kidney, spleen, liver

 

I have always considered that I have been a healthy person, exercised and eaten well.

 

Probably two years before I was diagnosed I became unwell, tired, and unable to concentrate.  My job as a Practice Manager of a small Medical Practice is stressful anyway, try working within the constraints of the Departments of Health and run a business! 

 

So, after some persuasion I went to see my own GP who felt I was run down and depressed caused by the work load.  I was put on mild anti-depressants, told to exercise more (I already went to the gym three times a week, but sometimes did not have enough energy at the end of the day). 

 

I also developed carpal tunnel in both wrists.  I was referred and over the course of 12 months had first the left hand and then the right hand operated on.  I also had complained of a sore tongue and was told to switch mouth washes. 

 

It took about a year for me to feel slightly better and I came off the medication but advised my GP that I felt very bloated all the time, had put on weight for no reason and also had little hard white spots on my face.  My cholesterol was tested and it was 8.5, it has always been on the low side 3.5.  I was advised to watch my diet, exercise and come back in three months.  A month later we went on holiday to Mallorca and although it was not excessively hot my ankles and legs swelled. 

 

I have always suffered from this in the heat so was not too concerned as it normally happened at night and went down by the morning.  This time it did not and I had to buy sandals two sizes bigger.  The skin on my feet and legs went a strange colour, where the sun had been. 

 

On my return I went to see my GP, a different one, who requested further blood tests and urine test.  Of course the urine showed protein, 2.5 at the time, and apparently the blood tests had some unusual results.  After consultation with the Senior Partners of the Practice they decided to refer me to a Renal Consultant.  Following the usual tests including a kidney biopsy my husband and I were called back, at short notice, to be advised that I had AL Amyloidosis. 

 

What is that and what is the treatment? I am sure everyone asks the same questions. Chemotherapy was the response and we felt like our whole world had fallen through a bottomless pit. 

 

Under the two-week cancer referral I saw a Registrar in Haematology, who advised me of the further tests to be carried out i.e. Full x-ray of the whole body and bone marrow biopsy and that I would be referred to the NAC in London.  She was not a very caring doctor – or should I say she had ‘no bedside manner’ and kept talking about light chains.  It did not matter how many times she tried to explain we just did not understand.  Finally, at the beginning of February 2008 I saw the consultant who I have great faith in.  He told me he only has three other patients with Amyloidosis.  He advised my treatment option – CTD and we decided I should start immediately.  I asked if I could continue working and he said most people did.

 

Unfortunately, after only 3 or 4 days on the treatment my legs swelled tremendously and I felt so unwell and fainted in the bathroom. 

 

I had about a week at home and when we went back to see the consultant he reduced slightly the strength of the thalidomide and cyclophosamide. 

 

As you may know, each cycle just seems to decrease your tolerance and I was finding in increasingly difficult to get up stairs and walk.  I had four cycles by which time I was in a wheel chair to go out. I also lost a stone in weight. 

 

Apparently my consultant had not seen such a severe reaction to this treatment before.  During the treatment I visited the NAC for the first time.  What a wonderful place and makes you feel that you are not alone or isolated. 

 

I came to realise that the most important issue is when you are diagnosed.  I think I was very lucky.  My SAP scan showed load in the kidneys and minute amounts in the spleen and liver.  My main problem still was fluid and the treatment was aggravating this. 

 

The GP Practice kept increasing the diretics and trying different ones, under guidance from Renal Unit but even though I had completed the four cycles at the beginning of April in May I still felt very unwell and had lost more weight. 

 

I was taken off all diretics as one of the new ones they had introduced which should ‘kick start’ the loss of fluid was too strong for my weight.  A week later I went to see the Renal Consultant who put me back on Fruesemide and Spirolactone. 

 

The following week I went to see the Haematology consultant who was very concerned I was not starting to feel better.  The next morning he phoned my GP Practice to advise I must stop taking diretics immediately as my GFR had dropped to 19 and the creatinine was through the roof. 

 

In the absence of the renal consultant (who was retiring) I was given an emergency appointment at the Renal Unit in Bristol.  At that consultation we were very shocked to be told that it looked like I would have to have dialysis. 

 

However, fortunately these results were totally due to the diretics I had been taking and once they were stopped my kidneys slowly began to recover and although they go from between 40-50 GFR consultants seem quite happy with this.

 

Throughout all this time I was cared for by my husband, who learnt to use the washing machine, and did everything for me.  We were also strongly supported by two of our very close friends and the Haematology Nurse, even though most of this was by phone.  No outreach Cancer nurses in our area. Remember you always need help and support.

 

I am now in what is termed by the NAC as probable remission.  When I went to the NAC in March 2009 there was no change.

 

However, on the advice of my haematologist I had Stem Cell Harvesting at the beginning of February 2009.  This did not go as smoothly as planned but in the end they got 4 ½ million cells (3 million required for transplant). 

 

Side effects: steroids have caused me to put on half a stone, which I am desperately trying to loose, I have never been this weight before and I am only 5ft, I also lost my hair which I have to say was the most devastating thing that has every happened to me, especially when it was falling out.

 

I do not wish to sound negative because everything is positive at the moment, and hopefully I may not need treatment for a couple of years.  I do feel that doctors, particularly specialist, seem to make light of some of the side effects and, as discussed at my meeting at NAC, a counsellor would be a tremendous asset both for new patients and those who come up every six months. 

 

Ray's story
 
Having been fit and active all my life, it was quite a shock to be diagnosed at the age of 64 with multiple myeloma and associated AL Amyloidosis. This was in June 2007 after an 18 month search for the answers to dramatic weight loss, fatigue and persistent diarrhoea, plus tingling in the hands and feet. 
 
I had also noticed progressive erectile dysfunction over a number of years, which at the time of my diagnosis had resulted in complete impotence. I had undergone every conceivable scan and test, all of which proved negative, in fact I was told "You've got a bit of IBS", and was discharged from consultations on several occasions.
 
Eventually I began to retain fluid and became very breathless so was admitted to hospital for further tests, and after a bone marrow biopsy, a diagnosis was reached.
 
I also underwent a SAP scan at the Royal Free in London which proved negative for Amyloidosis, but this was subsequently contradicted by my local histopathologist who confirmed Amy following his own Congo red staining on previous bowel biopsies.
 
My first line of treatment was CTD - four months duration resulting in remission for 12 months. When the Myeloma returned in treatable proportions i.e. 35% plasma cells, I was prescribed Velcade/Dex, after five cycles I am now in remission which, in terms of the myeloma means less than 5% plasma cells, my FLC readings are also within range.
 
Side effects:
 
The main side effect of Velcade has been increased neuropathy so the tingling and numbness in feet and legs has been exacerbated.
 
Post Velcade:
 
It took approximately four weeks before feeling anything like reasonable, my blood pressure was very low but has now recovered and the E shots have helped my HB so now my energy levels are good and the fatigue has receded.
 
Throughout, the diarrhoea has persisted and I have used MST and Oramorph to slow down the bowel, I think it gives me a modicum of control but the movements are unpredictable. I am under the impression that the amy has attacked my GI tract but am fortunate in that the treatment for the myeloma also treats the amyloidosis.
 
I have been informed that my next line of treatment will be Revlimid, and that I will continue on this treatment, hopefully for years to come, as a maintenance regime.Having been told initially that I possibly only had 3 - 4 years left, I feel this is very positive news. There have been low times, but with the unfailing support of my wife, family and friends, I feel that life is good and I intend to enjoy it!!


 

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