Dear Maureen and Ian,
Happy Birthday. I've been following your news and am very pleased that things are looking up for Ian.
Eva
Tom,
I hope you can have adequate pain relief easily on hand.
When I had my growth hormone injections I was ok on most of the days, except for a few migraines. Then on one day I got really ill with bone pain – a 9 out of 10,on the pain scale, temperature and vomiting. Oral meds were no longer effective. I couldn't travel to a hospital even in a cab – I was in Edinburgh where most places are fairly accessible but it still wasn't doable. My husband was traumatised by this incident so I'm worried what effect a similar situation might have on your family.
Given that you'll be on a bigger dose, I hope so very much it will go well and the people who have suggested this will stand behind you in planning pain and other symptom relief.
Eva
Tom,
I hope you can have adequate pain relief easily on hand.
When I had my growth hormone injections I was ok on most of the days, except for a few migraines. Then on one day I got really ill with bone pain a 9 out of 10 ,a temperature and vomiting. Oral meds were no longer effective. I couldn't travel to a hospital even in a cab – I was in Edinburgh where most places are fairly accessible but it still wasn't doable. My husband was traumatised my this incident.
Given that you'll be on a double dose, I hope so very much it will go well and the people who have suggested this will stand behind you in planning pain andn other symptom relief.
Eva
Dear Tom,
Hi ? this is Eva.
Firstly, thinking of you and the immense challenges you face. You must be in a state of shock. I appreciate that at the moment, your priority can only be to survive this ordeal and get your treatment back on track.
On the other hand, I?d like to suggest that in our culture there are enormous imbalances when responding to appalling circumstances caused by mismanagement or ?accidents?. We are encouraged to keep a ?stiff upper lip? when we are confronted by outrageous behaviour on the part of institutions or individuals who wield power. ?Whistle-blowers? are made to feel that it is they, rather than the wrongdoers, who are being unfair or unreasonable. If there was no actual intent to harm us we feel dreadful about uttering a peep. And yet in our own professional lives, many of us accept responsibility for mistakes that we (or our co-workers) have made and try to ameliorate bad consequences arising from them. Institutions tend to avoid accepting such responsibility and insist that no one in particular was to blame.
Tom, this is a very serious mistake. It?s true that no-one was out to get you, but it?s also irrelevant, because when you go to hospital, you have the right to expect more than just that the staff won?t deliberately do you harm ? you have the right to expect that they will help you. Also, the fact that this mistake has affected more people than just yourself doesn?t diminish its seriousness ? in fact, it makes it more serious. There should have been numerous safeguards and checks which evidently were not observed.
When appalling mistakes are made by institutions, the usual response from their spokespeople is that ?lessons will be learned?. But in truth, if your response to their wrongdoing is fairly passive (eg, expressing disappointment verbally to various representatives of the system and receiving verbal apologies or assurances from them), nothing concrete will be done to help you, compensate you or protect others in a comparably vulnerable position in the future. Institutions only act when they have no choice but to act.
Tom, I know that in your current state you can?t be expected to tackle this yourself. If you can find a way of dealing with the immediate challenges of eating, washing, not going insane, etc, you will be doing very well. But you will have to decide whether there?s anyone close to you, or people in designated roles whose job it could be to deal with such issues, who can take on the task of uncovering what happened — an advocate who can pursue your rights for disclosure and possibly compensation. The institution was responsible for delivering a life-saving service; it was terribly derelict in its duties, and its most likely response is to ensure that this dereliction is glossed over and forgotten.
Best wishes,
Eva
Dear Christine,
I'm so sorry about the disappointing results.
Is it time to research a mini-allo transplant? Full allos have a higher mortality rate. I think that some doctors are not keen and a patient might need to ask lots of questions. I expect they prefer to do a mini-allo on younger and stronger patients. The data from studies can sound disappointing,
but there is a sub-group who get remissions. It must take a while to search for the best possible match.
I appeared to get worse after my auto transplant, but there was a late effect that kicked in after about three or four months.
Eve, I'm also wishing you and Slim well and thinking of you.
Eva
Dear Tom,
I've had to stop wearing contact lenses because of the danger of infection.
I sometimes have to use Chloramphenicol eye drops (antibiotic, not lubricant) or Chloramycetin antibiotic cream- perhaps not spelled correctly. You might need to confirm whether you're having an allergic response to something as well that's affecting your eyes. Are your immunoglulins too suppressed? Can you get help with that with an IVIG if the infection persists?
Eye infections can make me tired and grouchy.
Best,
Eva
Dear Helen,
Good luck with your treatment. I still suggest some lubricating eye drops from an optician to be used a day after Velcade when the eyes can start drying up, lots of moisturiser for your hands, perhaps an antibiotic in the house if you get an infection late at night if your consultant agrees to have one waiting for you. When I was on about maybe my third cycle of Velcade, I was happily pottering about my kitchen fairly late at night. Sudddenly I noticed a weird infection in the nail bed of one of the fingers – it was swelling fast and my finger was going purple. I knew that at that rate the infection was spreading & I shouldn't wait until morning. I rang someone at the London Cancer Centre- a matron advised me to begin antibiotics immediately. I'm sure you can get advice from the NHS in the same way if the hour is late, but it might be more difficult to access meds. Anyway,see what your consultant thinks.
As for the mysterious eye, platelets or some lack of clotting factor? Once on my myeloma journey, I had a quite severe nose bleed for three hours and then a milder one for a couple of hours longer. It was so inconvenient and I considered going to hospital but it's an eighty mile round trip and I might have been been totally ok by the time I arrived. I couldn't really move much and had to be super patient, as each time I tried to get up, I squirted blood all over my clothes and the sheets.
At the moment, I seem to have lost a sense of the boundaries of my body. I was out having a soup yesterday in a cafe. I exploded a fizzy drink all over the table and floor. I often walk past tables knocking off cutlery at random. I feel like my brain's going in some ways. I even managed to pour boiling water into the cats' food and they've been staring at me woefully, trying to tell me they they don't want stew,even if they're hungry. I'm starting a big journey overseas in the next couple of days, so I better get my act together fast.
Eva
Dear Dai,
I wonder whether even if the Rev mightn't appear 'right' for you – if you had some with the Velcade it really might work in a synergistic way. I suppose it might be a question of funding and also of how many side effects you'd develop. Maybe your myeloma needs to attacked along a number of different pathways simultaneously. Sure Velcade seems a wonderful drug- perhaps one of the most powerful we've got for certain patients- but there has been a big push for at least two or three drug combos overseas.
Anyway, you must be so pleased to have more options. I'm glad you seem to like the steroids- I guess the increase in neutrophils is important. It does that for me too. How do you cope with steroid withdrawal?
Eva
Dear Maureen,
I?m pleased you are making this complaint. Even though myeloma is a difficult one to diagnose, taking a number of very different tests to rule various things out is the only way to respond if the symptoms persist and can?t be explained.
My own very superficial look at how societies evolve suggests that change is more likely to happen when an idea has ?found its time? – in other words, quite a number of people are talking or writing about it- and ( this is a big ?and?), the people or systems that need to change have to be challenged in a way that is not always comfortable for them. Otherwise, they will just repeat the statement, ?Lessons will be learned?..? and nothing will accomplished.
Eve ? it?s good to be proactive as you wisely point out ? but it?s not always enough. I had all the symptoms of mm for a number of years as well as worsening anemia. It was worrying because I was young, appeared fit and used to run 10 km a day. Apart from all the classical mm symptoms, I was having serious trouble with stairs. I continued to work full time and looked after two sons, and somehow, managed to squeeze in a rich and full life. However, I kept returning to my local docs and they kept talking about possible diabetes( tests showed I had none), and about a mild heart murmur which hadn?t affected me in the past. I had spectacular migraines, and was a bit scared that if I got too bolshie, I might be considered troublesome and not treated with patience when I?d stagger in with a migraine. In time – this is after another three or four years, I asked for hospital tests for my ?weird? set of symptoms.
This may be difficult to believe, but I went to hospital in Scotland in about 1997/98 for a week of investigations. We had migrated here with the children in 1993. Basically the same things were tested as in the local surgery, but at a more sophisticated level. Again, diabetes( I wasn?t even close to it); an offer to stretch my bladder so I wouldn?t want to pee so often ; proper heart tests which suggested that the murmur was so minor it was unlikely to affect normal function. I wasn?t aware of any blood tests that went beyond the basics. I did not suffer from depression though my work was very demanding and even stressful at times.( I used to be a secondary school teacher in an inner-city area in Melbourne that had quite a few problems and pupils to match, and now was working in Scotland with a totally different set of challenges). I asked the hospital staff about cancer and whether I might be hatching something- after all, quite a few relatives had died at a very young age from the illness. A family tree was even drawn up and a few weeks later I got a letter saying I was not likely to have an increased predisposition to cancer. We were going around in circles.
Over the next few years, I continued to have a number of spectacular infections and illnesses which could have pointed to a major problem with the immune system. There wasn?t much joined up care, and each time, the local docs expressed amazement., especially when on one occasion I almost died. Ambulances were called out when bone pain was in the left side, and paramedics would assess if I were having a heart attack. I looked really fit, I didn?t smoke or drink, I exercised, showed a lot of positivity. Each infection was treated with massive doses of antibiotics when appropriate. When I had severe bone pain, I was given a lend of crutches for a while from the local surgery and I kept working. Sometimes I was taken back to hospital for a re-run of the diabetes and heart murmur tests. I was starting to feel quite embarrassed, especially as my husband was the type to not go to the doctor unless a body part would be practically hanging off.
I think I was torn between assertivenss and not wanting to be labelled a hypochondriac. I always had my mother?s experiences in the background. When I had just started uni in Melbourne, my mother went to her local doc and explained she had a lump growing in her breast. I don?t know what happened, but after the appointment, my mother went to bed and didn?t get up for at least the next few months. She had never done anything like that before. She refused to talk about the appt, except to say that the doctor was not intending to do any tests at the time and that he felt her perceptions were coloured by anxiety. My father and I didn?t know to do. This really was in the days when doctors were seen as demi-gods. We didn?t call another doctor but looked after my mother as best as we could and assumed that she had indeed, succumbed to some depression or nervous condition.`
I?m ashamed it took my father and myself about three months to act. My mother kept refusing to see another doctor and she seemed to be going downhill. We called an ambulance without her permission. She was carried out as a weak bundle. Once in hospital, many measures were taken to hydrate and feed her. Tests were initiated without us knowing what was going on. We were told my mother had breast cancer that had spread to the glands and in such a way that treatment would be of not much use. I was extremely close to my mother and remember my immense grief as a doctor tried to explain to my eighteen year old self what the words ?palliative? and ?metastasized? meant. Once my mother had a diagnosis, she seemed much less depressed. I contacted all the major cancer treatment centres in Melbourne and begged for treatment, special treatment, any treatment, that would keep her alive longer. I lost all my inhibitions and inertia. One doctor eventually agreed to an experimental protocol.
My mother responded amazingly: she outlived all expectations- four years ? long enough for her to see me finish uni and attend my wedding ? her dearest wishes.
Did I learn anything? Not really ? we all think each case is a one ?off .
I?ll continue my story. I?ll never know if I?ve had the longest case of smouldering myeloma in the world. I kept presenting to my gps with all the classical myeloma symptoms . I worked hard at my job. My children grew. I got worse. My local docs made noises about increasing anemia and I saw the word ? platelets? on my medical file. But no-one was saying anything or explaining the need for extra tests. When I was at the exact age when my mother was diagnosed, in 2008 – I did something very strange.
I went on the internet and typed in my symptoms. Something that non- medical non-professionals are perhaps not encouraged to do as it can bring about stress and misinformation.
I recalled that my auntie died at 42 from cancer, and that her daughter died at exactly the same age from a different cancer. Their cancers has also been discovered at exactly the same time in their lives, and this came after an extended battle with the medical system; there was quite a lengthy period during which doctors didn?t agree to appropriate tests, saying my relatives were perhaps just ?anxious.? Surely I wouldn?t be diagnosed at the same age as my mother? Was I getting carried away with a fear of history repeating itself? But straying into certain parts of the internet for only about ten minutes made me aware that I could easily have a haematological malignancy or an illness of the immune system- I was no longer waiting for a doctor to come through for the first time in my life. This new world of doubt and questions made me horrified, frightened, stressed. In other words- anxious.
At the next appointment with my local doctor, which I demanded to have quickly, I told him what I thought my diagnosis was. Very inappropriate behaviour for a patient. I eyeballed him and said I had to have further very specific tests immediately. He complied, almost in silence. Four very difficult weeks later, my husband and I were told that I had multiple myeloma, 50 % plasma cells in the bone marrow, lesions: treatment was started on the same day.
Since then I?ve had a wonderful five years with some blips ? at the end of this month, if all goes well, I will have survived a year longer as my mother. I?m on heavy treatment at the moment, but I?m alright. I felt a sense of calm once I was diagnosed, though it was an awful day for us. One of my sons is making noises about proposing to a girlfriend. I always thought my mother?s ambitions were a bit modest, but, believe me, I now understand. In two days time, I will attempt to travel to Gdansk to meet that son and his gf who?ll be coming from Shanghai to spend a few days with me and to have a holiday. The gf?s parents- including her mum who?s also been on chemo very recently- are also coming from Germany as a last minute decision, and we?ll meet for the first time, in a house not far from the sea and a forest, nor far where my parents were during the War.
Can you learn anything from what I?ve shared? Yes, my life hasn?t been ruined ? I?ve had lots of superb times even since late diagnosis. But on the other hand, I believe if a complaint is valid, do it. Even a malpractice claim is ok in my opinion , as long as it?s judicious and there has been some major negligence and you believe that the fall-out will be better than a cover-up. And a gentle letter might be more in line with what you want instead- if it?s too long ago, or you are too ill or hassled to say much, and if you can really see it from the doctors? point of view. You can get someone else to write to those who misdiagnosed you, even if it?s years later. They need to know. There have to be lots of revelations rather than overlooking things, in order for change to occur. And I do understand that many of you had quick and appropriate diagnoses and are experiencing wonderful care. I also appreciate that MyelomaUK are doing great work to educate everyone, but they probably need your back-up in cases of late diagnosis. Even someone who reads the website occasionally and doesn?t write in might be able to contact their consultant or doctor about late diagnosis in the manner they see fit, as this might make a big contribution to the future of myeloma treatment in this country.
Best of luck,
Eva
Hi Tom,
There's a few ways of looking at that. I get some pain during the ten or twelve day gap in between treatment cycles for Bort. Dex. and Cycloph.
I don't know what's causing it and I doubt my onc can tell me because of how individual the illness is.
I've thought about it a lot. Factors at play could be that whenever the dex leaves the system there is likely to be more pain. It reduces inflammation and hence thre's less pain. Bort. whether it's working or not, is supposed to assist with bone damage and I don't know how many days that takes or when the response peaks, but when it does complex stuff to the bone it could hurt. When I had Zometa infusions at very regular intervals, I discovered that there was even some anticipatory pain in the week before the infusion. Don't ask me to explain that one, but I've confirmed I wasn't the first person to have that.
Of course, we can worry about a more sinister reason: progression. I'd expect that to be measurable either with pp tests, or freelites, or BMB's or if all of these aren't reliable enough – imaging. It sounds as if your oncs are very careful and responsible. Remember that many people can survive for very long periods with residual pain. Pain in itself is not a death sentence. Some papers imply that lesions don't heal- others say they do. I know some of mine have, because of scans I had once I went private. Normal X-Rays only show up damage when quite extensive, so other tests might be good. I had a humerus shatter very painfully due to a big clump of cells in the bone marrow getting out of hand. It didn't show up on X-Rays and the NHS where I was being treated in Scotland wasn't prepared to fund or approve other tests for reasons I could't ever get to the bottom of. If I had lived in London near a bigger hospital, I would have undoubtedly gotten the tests, even on the NHS, and once the problem was discovered, my humerus could have perhaps been re-inforced.
Everything is always more complicated and idiosyncratic:a week after I got home after my transplant I fell very very heavily and from quite a height onto that humerus. I was taking photos of fireworks on New Year's Eve. I thought of going to hospital immediately for X-rays, but I realised that casualty would be full of drunken revellers. It took over two more years before my arm became a serious problem, but I've read that if there are residual myeloma cells somewhere, then a very sharp knock can sometimes make multiplication more likely in that area. Again, I don't know if this is true.
I would be inclined to be delighted with the care your oncs are taking: try not to worry too much.
Best,
Eva
Dear Sue,
I am deeply sorry to hear this news. I hope that the good times you had will give you much consolation.
Eva
Dear Christine,
I didn't have peripheral neuropathy, but I needed infusions of platelets and I had a rough start: left the hospital after the ASCT, essentially needing a nappy, with neutrophils of 0.2, and only able to walk a few steps. After I made the Everest climb to the top flat we lived in in Edinburgh I was well and truly pooped. It's amazing though how after three months my energies returned and I could walk long distances and do many things. As I've pointed out before, I had a short sleep in the afternoons sometimes.
I could never go back to my work, even though I had enough fitness for some work. Secondary teaching is not just that- there are often great levels of personal assertiveness needed. In many classes there can be groups of pupils who are a bit immature, and I've certainly had groups in which some of the pupils had mental health issues and couldn't function with their peers. Also many hours of work on most nights correcting and filling in things as well as very early starts. Perhaps a return to being a barber could be a bit more gentle( even part-time).
In the meantime, I recommend you check out the Dana Farber Protocol for peripheral neuropathy on the net. Chris should give himself gradually increasing physical challenges once his onc agrees. Perhaps now is not the time to push too hard until he gets some more results. Light use of an exercise bike, a little work-out on the spot- bone damage permitting. I imagine that part of what Chris is missing is random interactions with the public when he was at work, as well as contact with regulars. This is an enormous adjustment to make and some kind of achievable occasional replacement activities might need to be sought once he's recovered. I have never solved this problem properly: tutoring would have required being up to speed on possibly an entire new course. Where I live in the Highlands, most teachers feel very uncomfortable with have a tutor seeing one of their pupils in case their own teaching style is assessed too closely. Even though I was a Maths/English/Learning Support teacher, I've had to find totally new directions to go in. I've volunteered to do a photo shoot with about one person a month, taking portraits of them. This has been high pressure work which is part of what I was probably missing. I then taught myself to produce very high quality work on my printer at home,in order to give the subject a portfolio, using special archival paper. The advantage of this is that I can work when I have a burst of energy. This has had spin-offs into different kinds of art work.
Christine, can you think of some skills Chris can be asked to develop? Of course, his career skills are always in demand!
Best of luck,
Eva
Congrats on the drop in paraprotein. I've also had problems with my eyes, but perhaps it's a different one as my eyes tend to be very dry.
Eva
Dear Helen,
Just to let you know I'm thinking of you and sorry about what you're going through.
I've done another post on Velcade today you might find interesting.
Best,
Eva
Hi Paul,
I'm on the same treatment. Velcade seems to be very drying: I have to moisturise my hands many times a day and the surface of my eyes requires frequent applications of eye drops like Murine. I drink enormous amounts of water. I've finished my third cycle. There was one day when my eyes stung so much that I had to stay in bed with my eyes shut as I was so deeply uncomfortable.
I think this treatment is quite heavy, but you notice the toxicity more as the cycles mount up. I am occasionally up all night after steroids, and I have steroid withdrawal when I'm very weak. The dose of Cylcoph. makes my bladder very tender for at least forty-eight hours. During this time, I'd have a lot of trouble sleeping because of a sensation that I need to pee. The only thing that helps is a paracetamol which deadens feeling for about four hours at a time. This might have to be checked with a doctor if kidney function is poor. Mine's ok atm. If you get a proper bladder infection you'll need to go so much you're likely to get help fast. Any infection, anywhere, probably requires at least a phone call to the GP surgery. I have been give antibiotics I can start taking if an infection kicks in.
I don't want to sound pessimistic about this treatment. I have a large calendar into which I enter side-effects and what I do on each day. I can then look for patterns and even make predictions about how I will be; when I will be able to have a visitor or cook a complex meal. I try to have activities planned for each stage of the treatment and what it brings with it and have been able to do things that are engaging and engrossing. I try to go for a walk, or run up and down on the spot three times a day, but there there really are two days of the dex withdrawal when I just lie there reading a book.
By the way, there's a mouthwash called Biotene which is meant to add enzymes and hydrate the mouth. Don't hesitate to use all the meds your doctor allows. I have Acicvlovir for viruses, fluconazole for fungal infections like thrush, Xantac for heartburn. You should be checked for a sinus infection. My nose runs quite a bit at certain stages of the cycle, but I've had few colds.
Best of luck,
Eva
