Dear Keith,
I hope you can have some good times when you feel that you are really yourself, in spite of all the tests and treatments. Also really hope your platelets go up. Are you a candidate for intravenous immunoglobulins?
Best,
Eva
Dear Dai,
Will be thinking of you and Janet on Christmas day.
Eva
Hi Tom,
I had a bad 'zometa flu' the first time I was given an infusion. It lasted two days of being really disabled – nausea, temperature, dizziness, the full shebang. I was bed bound.
The second time I had zometa the side effects were much weaker. Now I get a few aches before the zometa as if my body knows it's coming. Then I have very insignificant side effects for a few days: aches in my bones and a bit of fatigue.
Best,
Eva
Hi – yes, I live in Scotland. We have a flat in Edinburgh but live in the Highlands most of the time. I travel to london for treatment as well as seeing a doc in Inverness.
If you wish to communicate with me, my email is: evayouren@lineone.net
If you write to me I can phone you as I can do free phone calls within the UK.
Best,
Eva
Dear Dai,
Best wishes to you and Janet to have a wonderful festive season.
Thinking of you both,
Eva
Hi – it is a little difficult to answer your question as I do not understand what some people are refusing. Do you mean that they don't want a transplant?
Can you find another word to explain ' blood reap'?
Best,
Eva
Dear Keith,
Sorry to hear about what you've been through.
I agree that sepsis is a very dangerous thing. I almost died of scepticemia when I was twenty-four and had an infection that wasn't addressed fast enough in a hospital.
Hope you will recover better in your home.
Best,
Eva
Hi – wouldn't it partly depend on how much bone damage there is?
I've had some dexa scans with an analysis of degree of ostoepenia, and then with the same test done six months later. This was to determine if my bones were becoming more sturdy. Admittedly, this was done in a private hospital, but it might be possible in NHS institutions.
Best,
Eva
Dear Keith,
I'm so pleased you're feeling ok. I only know a little about all the parameters in a blood test – too low hemoglobin and you run out of puff, platelets too low and you can bruise easily, neutrophils too low and you can catch bugs. The way our bone marrow works gets compromised by all the treatments, and I suspect that even a doctor cannot say with certainty what is causing what. I think that both Rev and Thal can lower neutrophil levels. I do know that when neutrophils go below 0.5 then you are at real risk of catching things. One additional parameter to look at is what level your immunoglobulins are: for example if your myeloma is IgG, then your 'good' IgG may be suppressed, as well as your IgM and IgA. A doctor can advise you whether these have fallen so far that you are at greater risk. In some countries patients get intravenous immunoglobulins each month to boost their immunity: I'm not sure that the NHS will be too keen on providing that service at the moment. Always worth a try.
Anyway keep us posted. I'm due a blood test tomorrow – still on Thal and a bit alarmed by all the words I'm forgetting when I try to explain something. Surely I haven't aged that fast?
Best,
Eva
Dear Maria,
You are remarkably well placed in some senses of the word, and yet, it is a difficult place to be in. Pilgrim's post summed up many issues admirably.
I was diagnosed when I was a very fit and (apparently) healthy 52 year old. I didn't drink or smoke and ate well, so it was unexpected. I did have a mother who had died of cancer and who'd been diagnosed at the same age as myself.
It's four and a years since I received the news I had myeloma. It's certainly altered my life a lot as I haven't felt well enough to work as a secondary school teacher. It's been a stressful journey for my husband and myself as we had to learn a lot very fast, and at the back of our minds there has been the fear that I mightn't respond well to any of the treatments. Fortunately, my illness has been responsive; today I have been out shopping since I'm making lunch for a friend tomorrow. I look well and am able to do many things. In the last month my husband and I have been to Rome( work trip for him), to London – to see my onc- and I've gone to Edinburgh on my own to meet some overseas visitors. I've attended a film festival last week and am still making new friendships. More importantly, I've been able to do some things for my sons who are young adults working/studying in Shanghai but still really needing their mum.
However, I don't feel that I should conceal that there have been very major readjustments to make. I had four months of intital chemo, then a stem cell transplant which lasted for about two and a half years. Then a sudden shattered humerus which accompanied relapse. Since then I've had periods on steroids and Thalidomide, and now, just Thalidomide. Each phase had different potentials and different consequences. There have been times when I've felt unwell from the treatment. The induction chemo had me in bed for a number of hours a day. The transplant took two or three months before I could be very active again. Whenever I'm on steroids, there's a withdrawal period each cycle during which I tremble, can't sleep properly and have trouble walking. I have chemo brain even now and can't remember words sometimes. It's been important to adjust very fast to what's possible and to take advantage of that. For example, I've written about this before – when I was really bedbound I figured out I could still read and discuss what I had read with my husband. When I was able to be up for a few hours, I set myself challenges of cooking new dishes and even trying to share meals with neighbours or friends. It's been a constant process of re-invention. When I was physically frail I'd try and develop new skills – since my relapse I've done over thirty new paintings and a great deal of photography – some of it quite experimental. I suppose I'm saying that I have tried to gain new potentials to balance out the losses. When I was well I taught Maths and English and loved to meet random members of the public. I miss having my own income and career, but now I'm able to make contact with people who are interested in my work as an artist. My identity seems to be in a constant state of flux.
As for the emotions surrounding the diagnosis- well I don't expect to live to an old age and a part of me is grieving and angry. However looking back at the last four and a bit years, it's been very important to sound positive, to have plans and to enact them. If you don't, the people around you will really suffer, and relationships may be compromised. By all means confide in others and share dark nights of the soul, but this can be balanced with an excitement about life and a love of what you're doing, as if you're still twenty-four and have all the time in the world. If you can pull that one off, at least sometimes, then the people around you will suffer less and you are likely to have a better time. If I survive a few years longer then I will have had myeloma for about a fifth of my life – surely that's a big phase, one that I want to treasure and share with others.
I'm including a photo taken four weeks ago in Rome. My husband is on the right, I'm in the middle, and on the left is an Italian girl at whose home we stayed for a few days.
Eva
Dear Keith,
Thinking of you. Let's know what happens.
Eva
Dear Kes,
I found out I had myeloma four and a half years ago and at a similar age to yourself.
Before diagnosis I was out of breath, a bit tired and had some odd episodes of flu like illnesses which indicated my immune system was not working as well as it should, but in many ways I was brilliantly functional and working full time at a very demanding job. After diagnosis, by the time I came to the end of the third cycle of CTD, I was at a very low ebb. I was crushingly fatigued, my hands shook, my brain had slowed down and I even passed out a couple of times. I spent a number of hours in bed during the daytime to conserve my energy and I wondered whether I'd survive to when I'd have my transplant.
Looking back, I've realised that I couldn't tell the difference between succumbing to my illness and being on heavy treatment. I'd been given a cancer diagnosis and then I had felt very ill – so it made perfect sense to me to be preoccupied with my condition. Now I know a lot more about side effects and I can see that some of my difficulties were a response to the meds I was on. Of course, there's a parallel path of emotional re-adjustment, as you chew on how your life has changed. One thing that helped me when I was on CDT was to have some goals. I aimed to cook a
simple meal every day. Sometimes I couldn't do it. The bottom line was to read a story a day from a book of short stories and to discuss it with my husband. Somehow I got through.
I've continued to try and set myself goals at different stages of my illness. There was one time when I was having major symptoms of withdrawing from the pulses of steroid I was on. I felt so awful that walking to the loo was a challenge. I got my husband to buy me a pad of paper and some pastels. I set myself the task of drawing something. The hours went by and I felt better.
I've realised that the rock-bottom feeling can often be from the treatment, and that when it's over, there are periods of relief and relative normality. In the last four years I've travelled to some very interesting places, I've made new friends and developed myself as an artist and photographer. Because I understand the meds better, I try to be on a dose that suits me. When I relapsed after transplant,I wasn't on 40 or 20mg of dex a day- my oncologist and I found out that 8mg can work for me. I still have shaky days psychologically as I wait for test results or grieve for my old self. Today I decided to cook a meal for a bereaved neighbour, and I had to do it fast because he had a meeting to go to! I'm working on a series of graphic images. This weekend I will travel to Edinburgh on my own to meet a group of young women who are visiting from overseas and who are friends of someone I know. I'm on a low dose of Thalidomide at the moment and I am much more functional than I was when I had full CDT.
Perhaps I am more philosophical about my illness now: I will only die once, and in the meantime there are many things I can do, including new ones. If I survive for ten years, then I will have had myeloma for about a fifth of my life. Surely that's quite a phase and I wouldn't wish to spend all that time being paralysed by my illness.
Kes, I'll give you one more example of a difficult situation my husband and I faced. This wasn't linked to my illness, but it happened fairly recently. As part of my husband's work, he had to travel to a particular town in Scotland. I went with him and we arrived late at night at the B&B that had been booked for him. It was raining, the room was cold (central heating busted), the hot water tap didn't work, the room had such a low ceiling that my husband could barely stand up straight, it was too late to get any food anywhere. I did not feel sleepy and we didn't have an umbrella. The only thing we had with us apart from a few clothes was a camera. We decided to have a photographic competition- who could take the best photos within the boundaries of that room on that night. It ended up becoming very entertaining and we both did some interesting work. Before I knew it, it was two am. I'd had a wonderful time. Sometimes it helps to focus on a skill or passion you have whether it is already developed or maybe latent. The main thing is that can sometimes lose yourself in an activity and can try and live in the moment, that you are still developing and changing, and that you find positive ways of relating to the people who love you.
Best,
Eva
Hi Dai,
Have you studied Myeloma Uk clinical trial tracker?
What about PAD? I've already talked about this before, but might your consultant consider Rev plus Biaxin or Clarythromycin which is another name for it? It's a cheap antibiotic which has in some trials apppeared to have lengthened remissions with both Thal and Rev. If you google it, you should find studies and might need to show them to your consultant. I'm suggesting that this antibiotic could be used off- label.
If you go for a second opinion try someone in London who sees many patients.
You could even talk to them on the phone and ask if there's any chance of other meds. In the past, some patients got meds under 'special circumstances.' Gay and Patrick did, I think. I don't think you've got anything to lose by looking around a bit – unless you are at peace with
your current treatment plan.
Eva
Dear Dai,
I just wanted to say that I have admired how you have been a source, not just of analysis, but also of encouragement for the members of this forum, even at times when it hasn't suited you. You've expressed generosity and I'm sure integrity as you've displayed characteristics that have probably been central to your identity throughout your life. There may be times when you do need to withdraw however and look inwards or marshal your energies in different ways.
I know it's not up to me to comment on your treatment but I have been speculating about it. I don't really have a clear idea of the toll that the treatment has taken on your body. Yes, I know you're neutropenic and that your light chains are rising. The body is a complex ecosystem and there are many other parameters. When your onc/hem tells you that there are no more treatments I wonder what that really means. Has your system been nuked by the meds to such an extent that you couldn't possibly stand any more interventions? Or is the decision based on other factors? I may be shot down in flames when I say this, but I believe that the NHS probably has a flowchart which gives docs guidance on likely treatment paths and the order in which they occur. The rationale for this 'guidance' might include concern for patient safety and well-being, as well as financial constraints. Depending on the region and on the individual doc, there is probably a degree of leeway, a space in which judgement can be applied. For example, if a patient has severe neuropathy and is on Thal, they might move on to something even though they haven't fully exhausted all the potentials of that particular medication. Treatment pathways don't have to be adhered to robotically; the degree of conformity might sometimes be linked to the nature/philosophy of a particular doc as well as their immediate superiors, in addition to a rational assessment of what a patient might respond to at a point in time. Dai, if you've been reading the myeloma listserv where there is a larger patient group writing in than here, you probably have a good idea of just how various treatments can be. Is there a reason why you cannot be offered bendamustine? Are two or three combos out of the question? Does it have to be as linear as it appears? And if you went slightly further afield, would you have the same outcome? I believe it is never too late to ask for another opinion, even if you have a superb relationship with your onc/hem.
I haven't made these comments in order to make you feel that you have to find the 'perfect' treatment – no-one can do that, but I know that you're very analytical and I wonder whether you've been 'chewing' on these issues.
Thinking of you,
Eva
Dear Sue,
I'm so sorry about what you are both going through. I'm glad that you will have some support from nurses when Michael comes home. Don't hesitate to ask friends for help- meals, cleaning, whatever….. People may keep away because they don't want to interfere. If you wish to be alone but the stress of the situation makes daily tasks difficult, then friends could drop things off for you.
Some in Michael's situation might wish to take one day at a time and aspire to whatever is the closest thing to normalcy; others might need to talk about various issues or share memories. You will know what Michael needs. It might be an idea for you to have a bit of time each day talking to a friend on your own, trying to recharge your batteries so you feel stronger. Whatever happens, I'm sure that Michael will feel much loved and well cared for.
Eva
