Dear Ann,
I'm delighted you're doing so well.
Also glad you eat healthy food and have embarked on new ventures. Good to hear from you.
Best,
Eva
Hi Steve,
I can't comment on kidney function as I still had enough to cope with the transplant in 2008. My husband tells me that during the transplant I swelled up hugely as if my body was having probs getting rid of waste. My creatinine readings before the TR were normal. Afterwards, the swelling went down. Admittedly, they were pushing a lot of liquid through my system via iv. in order to keep me well hydrated.
On the topic of steroids- they are an important tool as they really increase the chances that a treatment will work. However, studies overseas have been uncovering that often patients did better on half a dose of steroids, not just in terms of immediate responsiveness, but also in survival. It may take a while until these trials are replicated here and their validity is tested, though I have already seen signs that lower doses of steroids are sometimes used in the UK.
Unless the mechanism of steroids is understood, or at least, the side effects are discussed, some patients might be at risk of assuming that they are in a dire state at the tail end of each cycle. It certainly apppears that way. I still can't believe that suddenly it feels as if the gravity on this planet has increased hugely, and that no matter how motivated I am, after a number of cycles of steroids, I reach a stage where I look upon a small staircase with the same awe as the pinnacle of Mt Everest. On one occasion, I have also experienced 'myopathy' while on steroids. I had to give them up for ten days and then I was better. While I had myopathy, I lost control of my muscles to such an extent that I couldn't get up off a chair or the loo without assistance – a kind of disconnect with my muscles. After a break and with a much lower dose of steroids in me, I was able to continue with treatment and not only get back muscle control, but also respond well to treatment.
I hope that this will be comforting news to some of you who are struggling with this treatment. Oh, and while I'm consuming steroids, if I haven't slept for a couple of days, then I won't hesitate to take a sleeping pill.
Eva
Dear Helen,
I'm very pleased you're doing so well and that you have acces to maintenance.
Hope you're stable for a long while,
Eva
Dear Andy,
Good luck with your treatment. I'm so glad your'e getting out and about. I've had visitors for lunch and I'm always pleased when we can have people over. We live in the north of Scotland and most of the time all we see is a passing buzzard! The scenery's great though….
Best,
Eva
Dear Tina,
Hi – this is Eva. I've been thirsty whenever I'm on treatment as well as for many months after transplant. It's almost as if the body wants us to flush out all those poisons we've been ingesting….
When I go to bed I have three large glasses of water nearby and if I wake in the middle of the night to go to the loo I always make sure I have a drink even if I'm half asleep.
I use a lip salve all the time and also you can buy sterile eye drops for dry eyes. They are called 'Viscotears Liquid Gel' and you can get them from opticians.
Hi Paul,
This is Eva from Scotland. Being ill can be isolating, that's for sure. You mention it's difficult for people to visit you – do you live in a major city? I've found that some friends feel nervous about contacting me in case I don't wish to be disturbed – or perhaps they're not sure what to say…. On the other hand, when I've reached out to people and made it obvious that I'd enjoy contact, then things have gone better.
I agree that having this illness can be terrifying. However I must reassure you that there can be life after being diagnosed. The transplant is not a walk in the park, but it can also be the beginning of a period of renewal. Normally the transplant is not painful, but it makes you very weak, and some people get nausea and diarrhoea and there can be a risk of infections. The hospital will have meds for nausea and they'll watch you in case you get an infection. I was afraid because I thought that if I got an infection when my immune system was down, I'd have to die – since then I've understood that antibiotics are used on transplant patients when they get a high temperature, and that this is very successful. Few people die from a stem cell transplant. When you get home you will need physical help for the first few weeks and you may be tired and want to snooze in the afternoon even once you're up and about. Your mother will need support as well. If she has anyone who can take over occasionally so she can rest, that would be good.
I used the word 'renewal.' It applies to the physical processes as your body builds a new immune system. But it can also apply in other ways. You have the challenge( and opportunity) of constructing a new 'you.'Think about your strengths, aptitudes, things you like. Are there activities for you if you're bed bound for a time? I was accustomed to a very adrenalised and social existence as a teacher – my areas were English and Maths and my work was central to my identity and lifestyle. I wasn't able to continue such a demanding career, though many do keep working after a transplant. At each stage I had to figure out what I could do, and then I had to try and do it with as much verve and pride and enjoyment as possible. I've got a husband so I had someone I could share things with, but my husband's a writer, and he's used to a lot of time on his own. I had to think about his boundaries as well as my needs.
When I was in bed I read a lot and found ways of sharing that with my husband. A week after coming home after the transplant I started to draw. As I got fitter, I took lots of photographs, even just out the window. I thought of ways of improving those photos and of how I could print them to a high quality. On one occasion I stayed up until dawn doing night photography from the third floor window of our flat in Edinburgh. I had a wonderful time that night because because I lost myself in an activity.
My transplant was four years ago. I recovered most of my physical strength and have even been well enough to travel. When I relapsed after two and a half years, I needed more treatment. Taking steroids did not suit me. My dose was reduced and yet my hands shook and I had trouble walking. Again, I set myself new challenges. I started to experiment with different media and was able to work in pastel. In eighteen months I've completed about thirty paintings and hundreds of photographs and I've been learning how to collage them digitally. I've cooked a lot of new dishes and invited neighbours and friends. As my art has developed I've begun to share it with others. I participated in a charity exhibition and as a result of this, made two really lovely friends. They will visit next week.
I've realised that soon I will have been aware of my myeloma for about ten percent of my life. That's a big proportion. Sure at times I've had a sense of dread and fear, but when I look back, there's been many opportunities. I can't always control my anxiety and most nights I still dream I'm teaching because I miss it. When I wake up I try to figure out what I can do that day and how I can share it with others. I've had many many happy times in the last four years.
By the way Paul, because you're so young, has anyone talked to you about a mini-allo transplant( from someone else who has compatible bone marrow)?
I hope you will write again,
Eva
Dear Keith,
I'm really sorry to hear what's happened. I don't know if this is applicable to you, but if your immune system is very suppressed, can you receive intravenous immunoglobulins?
Let us know how the CDT is going.
Very best,
Eva
Dear Daniel,
First of all, it's good that you were able to write in. I'm sure it wasn't easy. I can tell that you really want to face up to whatever is happening.
I've had myeloma for almost five years, so I'm not writing as a doctor, but as a patient. Your father did very well to have responded to the transplant and to the Thalidomide for so many years. I don't think that anyone can tell you what his 'outlook' is because myeloma morphs in ways that are very difficult to measure or even describe. It's to do with changes that happen to a patient's genes and to their bone marrow and how responsive the person is to each treatment. In a way, the body is a complex ecosystem which evolves in time, and each patient is a bit like a new undiscovered planet – there is so much we don't know.
There are some generalisations that are made in 'studies' that doctors write after they've done trials with lots of patients. These results don't tell us what will happen to each individual patient. They help doctors to figure out whether a particular drug works for lots of people, for example. Studies suggest that if someone has done well with their first transplant, they are 'likely' to benefit from another one. Studies also show that Velcade is a very good drug, and works for many patients who have relapsed. It sounds as if your father has some growths from the myeloma. If so, they may need to be treated with radiation or even an op, or maybe, the Velcade alone will do the trick. Your father's doctors are responding to the situation fast and that's good.
I guess you've been used to your dad taking his Thalidomide and that the first transplant must seem a long time ago. It looks as if your dad has had a 'relapse'- which is how they describe the illness coming back and affecting his health. Even though we can't predict how your dad will do, I think it's important that you know that some patients can 'relapse' a number of times and get better a number of times. No-one will be able to tell you for how long the patient will be better each time: unfortunately, we have to wait and see. I've relapsed after a transplant and responded to treatment again: I can cook, travel, learn new skills; today I phoned my son Daniel who's studying in Shanghai and he knows I'm alright.
As for specific treatment options – I haven't had Velcade. It's often given together with a steroid such as dexamethasone. Like many of these meds, it may cause tiredness, digestive issues, tingling in the hands and feet. When a patient goes back on treatment that's heavier than before they might feel really weak for a while. Steroids can make a patient hyper for a few days and then they might have a drop in their energy. After the transplant your dad may be extra tired for a while, but remember that he's had one before and was able to recover.
I think that it would be a great idea to have contact with a Macmillan nurse, and perhaps have them come to your place for a visit and discuss the situation. Your dad might be eligible for both practical and financial help, and it's essential to lay the situation on the line, to say what's really happening. This is also a time to work out who might be able to offer some support to you or your father – friends, relatives, whatever. Sometimes it's odd, but people you don't know that well might help as much or even more than those you've known for ages.
I was about seventeen when my mother was diagnosed with cancer( not myeloma). It was a shock. I helped to look after her and sometimes it was tough, but I am very happy about the time I had with her. Seventeen is an age when so many things are happening at once : exams, new friends, future studies on the horizon. It's important that you do go get some time to yourself and that you can think about who you want to be and that you can still hang out with your friends. When a parent has a relapse or is diagnosed, it's like an extended emergency : adrenaline surges and maybe a sense of dread. Your dad is likely to be worrying about you too. It wouldn't hurt if you chatted to your own doctor about the situation, and if you're feeling bad, finding out whether there's someone you could talk to. I believe that people who can ask for help are more likely to get it.
I'm sure as you get older you'll have learned a lot from this experience – you may even be able to help others with your special knowledge. In the meantime, I hope your dad responds to the treatment and that you can think of your own needs as well as helping him. And of course, you can write to this forum and tells us what's happening. You don't need a question to write in.
Very best,
Eva
Hi Dai,
Happy New Year to you and Janet.
I suppose this is a bad time of the year to go near a hospital. I was saying to my husband last night that having to go to Out Patients on New Year's Eve would have been 'interesting.'
I hope that you can do things that are enjoyable in spite of the chemo. I get dizzy from my Thal, fatigued and have some neuropathy.
Keep us informed about how the Bendamustine is affecting you.
Best,
Eva
Hi Tim – this is Eva.
What form are these presentations in?
Hope you're doing well.
Dear Tom,
I'm interested.
My email is evayouren@lineone.net
Thanks for having gone to all this trouble. Let me know if there's anything I can do for you. I was dx four and a half years ago and I've had a stem cell transplant. We visit London every three months when I have tests at the London Cancer Centre.
Best,
Eva
Dear Gill,
I'm loading in some photos now to show you where I live. A couple were taken a few days ago – the rest today. I understand that you wanted to be alone today- but perhaps you can see some of what I saw. We live in the actual railway station.
Eva
Dear Gill,
This is Eva in Scotland. We've a very quiet Christmas and I couldn't bear to have a tree or do a proper meal because my sons are both in Shanghai. I know that I can't imagine how you feel…I also wonder whether I'll be here for many more such occasions. I can't let that make me a perfectionist about every day so I live in my usual messy house with piles of things undone. When I got up today I walked around and took photos of the sun on the fields and the railway tracks around the house. I haven't loaded them in yet, but when I do I'll send you a couple.
Hi 'Gartocharn',
If you wish to speak to someone who is a patient and who has had a transplant, you can email me. My email is evayouren@lineone.net
Once we make email contact we could exchange phone numbers, and if you wish, I could phone you.
Otherwise, you could wait until the holidays are over and then speak to Ellen the nurse.
I do not mind if you speak to me on Christmas day….
Best wishes,
Eva
Hi Keith,
Intravenous immunoglobulins are for when your immune system isn't producing enough of them. As you know, when that happens you are more likely to get an infection or catch whatever's going around.
Your onc will be able to advise you whether you have a reasonable amount of usable immunoglobulin or whether it's very suppressed. Levels can drop due to the myeloma itself or as a consequence of treaments.
Best,
Eva
