David's myeloma story: from diagnosis to stem cell transplant
David diagnosed with myeloma at the age of 66. He shares the story of his diganosis, chemotherapy and stem cell transplant
David diagnosed with myeloma at the age of 66. He shares the story of his diganosis, chemotherapy and stem cell transplant
Well here I am sitting in my conservatory at home having just returned from a three week stay in the stem cell transplant unit at the Royal Liverpool Hospital as part of my myeloma treatment. A lot has happened in the last 12 months and for someone who had never been in hospital in 66 years it has been somewhat of a roller coaster ride with a whole load of new experiences. But along the way I have met the most amazing, dedicated and caring medical professionals.
The story doesn’t start here however. It actually started in late 2011 but I didn’t realise it at the time. A routine blood test for hyper tension was being reviewed by my GP – no problems or so I thought until he looked up from his computer screen and said “you have an elevated protein level in your blood. I think that we should refer you to a consultant to review.”
Six weeks later I saw the consultant at my local hospital in the Isle of Man who reviewed the results and said I had monoclonal gammopathy of undetermined significance (MGUS). MGUS is a condition in which an abnormal protein (monoclonal protein, or M protein) is in the blood. M protein is produced by plasma cells, a type of white blood cell. MGUS usually causes no problems.) It meant nothing to me either! The consultant gave me a leaflet on the subject and said “study that and if you have any questions we can go through them next time”. In the meantime the consultant organised for me to have a full skeletal x-ray undertaken.
Once home I did look at the leaflet and saw the dreaded C word and mention of something called myeloma which didn’t sound good to me! However with the consultant’s words ringing in my ears to the effect that there was only a 1 in 20 chance of the MGUS developing into myeloma I filed it all to the back of my mind. In fact when my wife asked how my visit had gone I said to her that there was nothing to worry about and there was only an outside chance that it could develop into “something ooh nasty”.
A pattern of blood tests and quarterly appointments with the consultant now developed. The skeletal x-ray revealed no problems and apart from the elevated protein level which stayed quite happily in a narrow band all the other blood parameters were good.
Whilst lifting a suitcase up a narrow, twisting staircase in a hotel I felt a muscle twinge in my groin. By January 2015 it wasn’t getting better and a visit to the GP suggested that some physio might be a good idea. The January MGUS blood tests revealed no significant changes.
The physio visits started but no improvements were detected and in fact things felt like they were getting worse. At one stage the physio set some exercises but they were far more painful for me than they should have been and the physio was stopped towards the end of March. I was now walking with a noticeable limp and it had become almost impossible to lie on my right side.
The usual blood tests were taken at the beginning of April and two weeks later I went to see the consultant. It was a new locum who I hadn’t seen before but he reviewed everything thoroughly and then said “do you know that your para protein level is elevated?” No I didn’t but what did he mean? The levels which had been going on quite happily in the 17-20 range had now shot up to 28. His next question threw me a little bit as he asked if I had any symptoms. What did he mean? He then ran through a list but the one thing that struck a chord with me was the mention of pain in the back or pelvis. I mentioned the pain I had been experiencing and he immediately sent me for an x-ray and arranged for me to come back in six weeks to discuss the results.
Shortly after that we went to Italy for 10 days for a well earned holiday. It was a fantastic break but I was still limping and was finding some movements quite uncomfortable. It was brought home to me how things were deteriorating when we had a limousine hired for a day and I struggled quite badly to get in and out of the back seat. I resolved to go and see my GP as soon as we returned from holiday reasoning that although it was 3 weeks before I was due to see the consultant she should be able to see the results of the x-ray on her system.
Luckily I was able to get an appointment to see the GP on the day we returned from holiday and explained the position to her. She could indeed see the x-ray results but they revealed no abnormality. I explained to her the overall position and when I told her about the physio she told me “and it had no effect”. She reviewed the position and said “I think that they x-rayed the wrong area” and immediately arranged for me to have a pelvic x-ray undertaken. I had this done the next day. 24 hours later the surgery phoned me to say that the new x-ray had revealed a significant lesion on the Iliac bone in my pelvis and an urgent referral was being made to the orthopaedic consultant! I think this was the defining moment-the red button was well and truly pressed. We had gone to Defcon 1.
An appointment with the orthopaedic consultant soon followed. He was most helpful and honest and when we asked what he thought it was he said it was almost certainly cancer and he suspected that it might be bone cancer. He did say that the reason for limping was that the lesion was close to a mass of nerves which were clearly being irritated by the damage being done to the bone. He then arranged for me to have CT and MRI scans done urgently. These happened within days and were my first contact with the hi-tech side of the NHS.
Within 30 minutes of returning home from the MRI scan the Orthopaedic consultant phoned me to say that he had seen the results of the scans and could see no signs of soft tissue damage but he still wasn’t in a position to define the cancer. He did mention that there were in fact 2 lesions, one on the pelvis previously identified and one on the left femur but much smaller in nature. He therefore proposed to send my file to his colleagues at the Oswestry Orthopaedic Centre of Excellence to be reviewed by a Multidisciplinary team. That review came back within days and the outcome was that on the balance of probability it was myeloma.
This was only days away but in the meantime read up on myeloma. I rapidly discovered that it was a comparatively rare form of blood cancer affecting around 5,000 people a year in the UK and although it wasn’t curable it could be induced into long periods of remission. Thus armed with a mass of relevant information we went to see the consultant in my local hospital. Again it was a locum who probably wasn’t prepared for the depth of research that we had done. He highlighted the rise in the Para protein levels which had now risen to 34 and agreed that it was likely that Myeloma was the culprit but was concerned that apart from the para protein level all the other blood results were normal. He said that the team locally would discuss my case in a multidisciplinary meeting and comeback to me. Travelling home in the car my wife and I discussed the meeting and felt vaguely frustrated by the outcome and decided we would discuss the position with the GP. However within 30 minutes of arriving home I received a phone call from the consultant’s registrar to say they were referring my case to the consultant haematologist at the Royal Liverpool Hospital who was a specialist in the treatment of myeloma.
The appointment to see the Liverpool Consultant arrived in days and June 19 saw us in Liverpool for the first time. Little did I realise how often I would be flying over to Liverpool for the rest of the year. Around this time I updated the senior managers in the office where I worked about my situation and they were very supportive.
So to the Royal Liverpool Hospital for the first time and first thing was a blood test. I was going to rapidly get used to the fact that every time I met a medical professional they would want to jab a needle into me! The meeting with the consultant was very productive and he wanted my story from the beginning and he listened very intently and then reviewed the various results on the system. He was inclined to the view that it was indeed Myeloma but could not make a definitive diagnosis until they had run further tests. Another appointment was arranged for two weeks later but the consultant advised me to be prepared to be admitted as an in patient for up to a week.
At that point the real seriousness of my position was brought home as we were about to have a weeks break down in the West Country. When we told the consultant this he was not sure he was happy for us to go as my calcium levels were a little skewed. It was arranged that I would have another blood test in the Isle of Man 5 days later and depending on that result the Consultant might approve our arrangements. He did want to know that we were within no more than an hour’s travel of Truro hospital in case there were problems. That really does focus your mind! In the event the travel was approved and all went very smoothly.
Back from holiday on Friday and onto Monday and flying into Manchester then taxi to Liverpool. Installed on ward by 2.00 and then it begins. A slight aside at this point; before we left home I had to do a 24 hour urine collection. This was successfully completed and two containers were carefully packed up in a case and checked in at the Isle of Man. However on arrival at Manchester airport one case never appeared on the carousel. Yes, the one with the special collection in it. Completed a missing luggage claim and asked for the case to be delivered to the hospital. Two days later the airline tried to deliver it the hospital but due to a miscommunication delivery was refused. A hurried email and the case and its contents were safely delivered the following day. A source of much amusement to the nursing staff and me contemplating having to complete an insurance claim for the contents of the case!!
So checked in on the ward and the inevitable blood tests. However a special treat was also in line for this visit, a bone marrow biopsy! The doctor undertaking this task duly arrived with his trolley with the tools carefully hidden under a cloth. When this was removed I distinctly remember thinking about the middle ages as some of the tools lacked the finesse of the modern technologically driven Health Service. However the procedure went ahead smoothly and was only mildly uncomfortable for a very short period. No bruises or scars were left, little wonder that this doctor is now one of the consultants on this ward!
The result of all this was that the Myeloma diagnosis was confirmed.The large lesion on the pelvis was not in a load bearing area and was not deemed a risk as it was felt that it would respond to the treatment. An orthopaedic consultant reviewed the lesion on the femur and concluded that as it was only 10cm it did not represent a risk of fracture.
Now the discussions on treatment took place and I was invited to consider joining the Myeloma 11 clinical trial. I was given lots of information on this and had a full discussion on the benefits and pitfalls. There are three arms of the trial all involving different combinations of treatment and the arm that you get is determined at random by the trial computer. After considerable thought I felt that this was the most suitable thing to do even after the consultant had provided a comprehensive risk summary. I was allocated to the most intensive arm of the treatment which involved 6 to 8 cycles of 28 days each. There were 4 drugs involved but the principle one was called Carfilzomib which had to be administered intravenously in hospital over two days for three weeks out of every four. The added complication for me was that I live in the Isle of Man and the hospital is in Liverpool so this meant some significant travelling each week and being away from home for 3 nights – all pretty exhausting. The consultant explained to me that the protocol was that when they felt that they had reduced the Para protein levels as far as they could they would then do two additional cycles.
The next thing was to get a check up by the Special Care Dental unit as this is required before commencing treatment as part of the ongoing support involves a monthly infusion of a bone strengthening drug which can impact on your jaw bone. The check-up tries to anticipate if there is likely to be any major dental work required in the next two years. In my case I emerged form the unit minus two teeth which were deemed likely to expire within that period. Once again the value of the multi-disciplinary approach that was adopted was paying dividends.
The one additional concern at this point was that I had developed a significant rash on both arms and the consultant wasn’t happy to commence chemo until it was known what it was. I was referred to a consultant dermatologist (once again the multidisciplinary approach worked and I had an appointment within days) The dermatologist took one look at the rash and immediately identified it as an allergic reaction to a type of plant sap which was activated by exposure to sunlight. We immediately traced the problem to an ivy at home where I had been a little careless whilst doing some judicious pruning. Once that had been clarified the chemo was clear to start.
However there was one thing left to clear up and now I knew how demanding on my time the treatment schedule would be it was time for a discussion with my managing director. Luckily he agreed with me that it would be appropriate for me to retire immediately and whilst I would have preferred a more planned retirement it was a sensible solution for me and my employer.
So with everything cleared I checked into the Royal Liverpool Hospital for what I thought was a two day stay to start my treatment and ensure that there were no hiccups with the planned treatment. As I was rapidly learning, flexibility in all things health related is absolutely essential and a two day stay turned into 12 days as they adjusted my support medications to get the optimum calcium response. Thank goodness I had retired! The stay on the ward showed me several things. Firstly how good and professional the care was and secondly how lucky I was to be under the care of the Liverpool Haematology team and thirdly how lucky I was to only have Myeloma as most of the other patients on the ward had other conditions as well!!
After that a pattern of treatment was set up. We would leave home late Monday afternoon, fly to Liverpool and check into our hotel. Then it was into the Royal at 8.30am on Tuesday for Blood tests then up to the Oncology day ward for the infusion with fluids which could take anything from 3 to 6 hours. The same thing on Wednesday and then catching the last plane home on Wednesday evening.
The treatment went well and I had no significant reaction to the chemo. Calcium levels remained a concern and some tinkering was done to optimise this. The most glitches arose from the support drugs and I had a severe rash due to an allergic reaction to two of the drugs but suitable substitutes were found.
Through all of this and ongoing I have been very lucky to have an extremely supportive GP who has taken a keen interest in my treatment and made a point of being available anytime I needed to talk to her.
So to the results of the treatment and after one month they were amazing. The myeloma research sister, who was providing hands on support and was and is my prime point of contact, said they were fantastic. She has been absolutely amazing during the whole process. The Para protein levels dropped from 35 to 6 and the light free serum chain which had been at 1600 had dropped to the normal level of 6.The consultant pathologist had to run this test 3 times as he couldn’t believe the results. The other measure that is looked at is the Immunofix but that remained positive. By the end of the second cycle the Para protein levels had dropped to nil and this was confirmed at the end of the third cycle so much to our surprise and possibly relief the decision was made to stop the chemo at the end of the 4th cycle. Officially the chemo completed on 23 November 2015. More importantly, from a personal point of view, was the pressure coming off the nerves in my right leg and by the end of the third cycle the limp had gone and I could lie on my right side without discomfort.
The myeloma clinic attended in December was interesting. The consultant, who is not given to the use of superlatives, described the results as fabulous. The most part of the conversation focussed around the next stage of the treatment and it was clear that a stem cell transplant using my own stem cells was the preferred route and had the potential to lengthen the remission period significantly although as ever no guarantees. Arrangements were made for me to see the stem cell consultant the same day.
The chat with the Stem cell consultant was very revealing. He approached the whole thing from the myeloma point of view and made it clear that the process was an integral part of the myeloma treatment and that my age, general health and good response to the initial treatment were strongly in favour of the process. He then went on to cover the downsides and the potential risks and he pulled no punches here. He was frank and honest but at the end he was unequivocal in his recommendation that I had the procedure. This took me by surprise as I wasn’t expecting such a definite recommendation.
It was all scary stuff and quite daunting. I discussed the concept with my GP and agreed that it was a window of opportunity which couldn’t be ignored. Yes I could put the process off until the Myeloma reappeared in perhaps two to three years time or go for the Stem cell procedure and substantially increase the remission period, perhaps doubling it or even better but absolutely no guarantees. The pro factors were:-
Yes there were risks, and things could get worse before they got better and the substantial recuperation period was daunting but on balance the family and I decided that it was the best way to go.
Before we got into the next stage a small problem appeared from the left field. Health issues have an unsettling way of reactivating just when you thought they had been sorted and in this case an x-ray of my pelvis had revealed that the small lesion on my left hand femur had expanded from 10cm to 30cm. The myeloma consultant was inclined to believe that this happened between the initial x-ray and the start of treatment but the x-ray couldn’t show if the site was still active. An appointment was made to see the Orthopaedic Consultant at the end of January but before then a PET scan was required to identify any hot spots which would show if the cancer cells were still active. For reasons that I still don’t fully understand the PET scan had to take place at the Christie Hospital in Manchester but we got it done. After seeing the Orthopaedic Consultant it was concluded that the site was not active and did not represent a fracture risk although he advised me not to run and avoid lifting heavy weights!!
Mid January 2016 saw me receive a single chemo infusion in order to mislead my body into producing the elusive stem cells. Although this was a higher dose than I had previously received I experienced no adverse reaction. This was followed by a daily injection of growth hormone to stimulate the maximum production of stem cells for harvesting.
The last week in January saw us in Liverpool for the week which did live up to its billing and was quite gruelling. It started with the fitting of a femoral line which is a sort of giant canulla which is inserted into the femoral vein in your groin. Sounds pretty gruesome and was something that had me quite concerned but luckily my Myeloma Research sister was able to find a patient leaflet prepared by the University Hospital in London which did a lot to set my mind at rest. In the event the process was quick and efficient with very minor temporary discomfort for a very short period and all carried out in an Intervention Theatre with a cast of thousands but some fascinating high tech ultra sound and x-ray machines were used to assist in the process. The removal of the line at the end of the week was handled efficiently by the 10z day nurses and was quick and effective with no discomfort.
To describe the stem cell harvesting as gruelling is probably overstating the position. It involved 3 days for up to six hours per day connected to the Aphaeresis machine( a real high tech bit of kit and absolutely fascinating to watch) It wasn’t painful except when the nurses wanted to insert a needle into my arm as well and then couldn’t understand why I would settle for an extra hour on the machine rather than hold my arm in an unusual position whilst a knitting needle( it wasn’t but that’s how it seemed) was jammed in a vein. Anyway after 3 days sufficient stem cells had been collected and off they went to be deep frozen.
19 February saw us back at the stem cell clinic and signing the consent forms after having a full MoT on heart and lungs but all OK. Signing the forms was not an easy process as the registrar did an excellent job of highlighting all the risks and complications but then countered it by saying that they would build me a new immune system. A provisional date of 21 March was set for the procedure but in the event, through no fault of the hospital’s, I wasn’t admitted until 4 April.
And that conveniently brings us back to the beginning of this note and the opportunity to update you with the latest position. On the Monday a PICC line was fitted to ease the need for multitude of needles as bloods are frequently required and stem cells to be returned plus there are various infusions and support drugs to be administered. But the good news was that now two major hurdles had been overcome. The high dose chemo therapy was administered on Tuesday but, there were no significant problems with this. Then the following day the stem cells were returned. This took all afternoon but the tedium was greatly relieved by the very cheerful nurse monitoring the whole process. Again there were no significant problems with side effects from the process.
When they sit down with you and run through the risks and side effects from the stem cell transplant process it takes a while to really understand that it isn’t a menu of complications from which to choose. You may experience some or all of the effects but you won’t escape entirely. For several days I wandered on in blissful ignorance. No loss of appetite, no loss of taste, no sickness – I almost convinced myself that they had injected me with water rather than the high dose Mephalan. Even the hair remained reassuringly intact and the blood results were all in within the correct parameters. But the lovely team looking after me knew better and that I would feel less cocky and more unwell quite quickly. Things are measured in days but they use Day 0 as the day that you receive your stem cells back again. The Mephalan only remains in your body for 12 hours but in that time it’s like a tornado sweeping through a timber village, it pretty well uproots every loose bit of timber but some take a few days to topple over. Well that’s what happens in your body as the Mephalan targets every quick growing cell and knocks them down but it takes a few days for them to fall over completely.
But they do fall over and when that happens the effects become quite apparent. In my case my throat became very sore and diarrhoea developed. I had set myself an objective from the beginning that I would do all that I could to maintain good levels of fluid intake and eat as balanced amount of food each day as I could manage. With the use of the various mouth washes that the team provided I was able to sustain this objective. Yes, there were days when my attempt at eating a particular meal faltered quite quickly but luckily my taste or desire for chocolate never diminished!
It is important to keep the team advised of anything which you feel is out of kilter. Whilst it may seem a big issue to you it is routine to them and they have a well practised routine and set of protocols to deal with the myriad things that may arise. In my case it was a temperature spike to 37.9 degrees. This soon had the full response from my amazing team of nurses and quick intervention from the doctors. As can often be the case one problem can easily lead to another and a previously unsuspected sensitivity to intravenous antibiotics(probably because I had never had them in this form before) induced an interesting red rash which again the team quickly brought under control.
This may seem to imply that I felt awful and took to my bed but that wasn’t the case, generally I felt OK, probably more familiar with the toilet than usual, but otherwise better than I expected to feel. The regular contact from the nursing team was very reassuring and the care and compassion combined with their professionalism and good humour provided an environment that was as comfortable and encouraging as possible.
The principle level that is monitored at this time dropped to the predicted 0.1, ground zero as it were! Day 9 showed a change as the level went to 0.2. The results now stepped onto an escalator. The next reading was .9. “Oh it will be above 1 next time” came the comment – well it was at 2.7 and then the next day to 3.5 within the normal range. The throat went and the other side effects diminished. Slowly some of the support medication was withdrawn.. I was allowed to make excursions off the ward but the first one quickly made me realise just what a hammering my stamina had taken.
Through out my stay the one thing that I assiduously wanted to avoid was an NG tube for feeding. Now I was on the mend I thought the risk had gone then to my shock and horror a nurse I hadn’t met introduced herself and said she had come to set me up with an NG tube. Luckily my day nurse was swiftly on the scene pointing out that it was the wrong room. We all had a good laugh at that point as apparently the expression on my face spoke volumes!
By now my hair had disappeared, some of it from unexpected places, but essentially I was a skin head but strangely some ladies thought the overall effect suited me! It was never something that was much of a hang up to me and as long as I can keep my head warm in the appropriate circumstances all will be good until it grows back.
Now here we are pretty well 3 weeks to the day of my admission and I have permission to return home. A little bit of an exercise as we will have to fly. I am travelling back as a passenger needing assistance as although I can walk quite happily I just don’t have the stamina to walk the long distances that are demanded by a modern airport.
When I approached the stem cell transplant it was with a good deal of trepidation. However due to the outstanding care and support from all the nurses and doctors working with the Royal Liverpool stem cell unit and the respect, compassion and good humour that they have brought to a difficult job any concerns I had were rapidly dissipated. There is still quite a long period of recuperation once home(think in terms of months) before I will be fully recovered and in the short term I will be very vulnerable to external infections but gradually things will improve. However I will still have access to the comprehensive support of the stem cell unit should I need it.
The support from my family and friends has been amazing and absolutely essential to carrying me through the difficult times but more than anything else the stalwart support of my wife has made the journey immeasurably easier than it might have been.
I cannot speak too highly of the support that I have received from all the medical staff that I have come into contact with during this journey. The care and professionalism has been outstanding and the Royal Liverpool Hospital and all its people have been absolutely amazing and far, far exceeded my expectations.
This journey is on going. As it stands at the moment Myeloma is incurable but given the depth and speed of research being undertaken hopefully that is not a situation which will endure. Tremendous strides have been made in recent years in treating this condition and more changes are round the corner which should have a significant effect on existing sufferers and those still to be discovered.