Dear Ange,
I was diagnosed with mm four years ago and I've had a number of treatments. I'd be happy to share my experiences with you, but I don't know what the focus of your interest is. If you'd like to chat with me, you could drop me a line to my email address and I could call you – I have free calls. My email is evayouren@lineone.net
I know this must be a difficult time for you. I've had a good four years and have done and experienced many wonderful things – though there is no doubt that a diagnosis of myeloma is life changing event. By the way, I was the same age as you when I first found out I had to be treated for this illness.
Best,
Eva
Dear DAvid,
Deeply sorry to hear the news.
Good luck with your treatment. Keep us informed.
Eva
Dear Stephen and Gill,
So glad you've persevered. Let us know how you are.
Thinking of you,
Eva
Dear Keith,
No wonder you've felt bad. I hope the blood helps you feel better immediately.
Eva
Dear Jill,
Delighted with the news.
Good luck to your mother – it's wonderful too that you are giving her such support.
Eva
Dear Keith,
Sorry to hear about what you are going through.
Is it possible for your doctor to lower the level of dex?
Eva
Dear Elfriede,
I was diagnosed in 2008. During my induction therapy and for a time after my transplant, I did not not travel far. In fact, after my transplant, I waited for a full three months before I went on a long bus or train trip.
When I was in remission, I travelled to China, Italy and the Netherlands. It turned out that I was already relapsing during the trip to the Netherlands, but I didn't know. I felt ill and thought that I had a flu. Maybe I did have a nasty bug. I don't regret any of those trips, though I guess I took some risks.
In order to minimise risks, you can have blood tests and discuss the results with your doctor. If your neutrophils are just a bit below 2, then you may be slightly immunocompromised. Once they drop below 1, it starts to really matter. Of course, your doctor will give you the best guidance on these issues. I have been told to travel with various antibiotics, so if I get an infection and I phone my consultant, then if I am in an inconvenient place I can start taking antibiotics immediately if I am instructed to do so.
Another issue is whether your bones are at risk of fracturing. If they are, it would be unwise to travel on your own to a remote place. It is possible to have a 'dexa' test – a look at bone density which can give you an idea how fragile your bones are. The person who does a 'dexa' test is usually an edocrinologist. Another cause of bones fracturing is if you have a big collection of myeloma cells in one spot in your marrow. I had that, and it led to my arm fracturing. There were warning signs with pain.
I'd like to say that in spite of the risks, I have deeply appreciatd my travels. I'm on treatment after a relapse, and after seeing my oncolgist in London last week, I have travelled to Wales on my own, and then returned home to the north of Scotland last night. I'm very pleased I made this journey and it felt very good to go somewhere by myself. At the moment I am not on steroids and I only take a low dose of Thalidomide, so this is why I am more mobile than I was before.
Good luck with your treatment, and let us know how you are going.
Eva
Dear Dai,
Delighted the treatment was so effective. Hope you and Janet can enjoy the wonderful evenings.
Eva
Dear Keith,
Hang on in there. I'm not just saying this as a mantra, I really mean it in your case.
It sounds as if there has to be better communication between you and your onc. My glucose levels have been veering and I'm now seeing an edocrinologist. Firstly, I'm sure dex can cause high glucose. I understand why your onc would wish to 'stomp' on the mm with a big dose of dex. However, there have been studies that compared two groups : high dose dex with revlimid and half the dex dose with rev. There was a noticeable survival benefit in the lower dex group. It's a difficult balance for doctors to achieve: between treating the illness and minimising the side effects.
My dex had to be really reduced after my relapse. I've written about this before but in case you haven't read it I had weight gain, increase in glucose, withdrawal syptoms after each hit of dex – the symptoms were so bad that I could only walk a few metres on some days and was shaking a lot. Also odd anxiety and states of mind that I couldn't recognise as being me. Eventually I got myopathy – major loss of muscle control and ended up not even being able to get up off the loo on my own. I must add that the myopathy resolved after a ten day break from dex and we re-started at a lower dose. Your dose is really huge.
I've been off dex for about six months now- am still on Thalidomide. I gradually got my muscles back and have had a really high quality of life. It's been worth persevering with the treatment. I've now improved my fitness and can walk a mile at a fast rate and do lots of things.
I also want to add that there are so many complex systems in our bodies; we sometimes don't know what's causing what. I had read that Thalidomide can cause hypothyroidism – low thyroid values that can require meds. I had such readings. I've been sent to an endocrinoligist who has examined me. A lump was found on the side of my thyroid – it's a large cyst. It could have 'irregular' cells which might turn out to be malignant. If so, I'm told this is a very treatable condition. I will know the results at 5.30 today and I'm in London on my own, waiting for the news. The edocrinologist is also going to explain certain things to me about diabetes. If I learn something new, I will pass it on to you.
In spite of all the stress, I've had really good times and it's been worth it sticking with the treatment. Please keep writing and let us know how you are.
Eva – in an internet cafe in an unfamiliar part of London.
Dear Wendy,
I'm in London – saw my onc today in hospital and am staying at someone's house, so it's difficult to write.
I just wanted to say that my light chains moved around furiously for about seven or eight months while I was on treatment for my relapse. The treatment was working, but the light chains were going up and down.
Having a reading just a bit over normal often doesn't mean much. Light chains can be absolutely massive for some people. Mine were considered fairly low( at several hundred). Once I seemed to have a superb response to treatment, they finally came down to 29 for IgG Kappa. The IgG Lambda were also in the high twenties so the ratio was ok.
It must be frustrating wondering. Two months is a long time to hold out. Maybe you can get a doctor to do a complete blood count ( CBC) test. This won't be as costly to the NHS. It's not definitive by any means. If your hemoglobin is good and not dropping fast and many of the results are within range, then it's less likely you're relapsing. Of course, a relapse has to be well entrenched before your bloods start heading south. I don't know if you're on meds at the moment; some meds can make your platelets and/or your neutrophils drop. Ideally, you would stop worrying because an IgG Kappa light chain reading of 22 is really well withing the range of 'normal' fluctuations. As Helen says, it's a longer term trend that matters. If you find the wait unbearable, you could find out what a freelite test would cost if you pay for it yourself. But even then, it would be best to wait a bit before having another one. When I had my relapse, the hospital where I went to, sent my freelites off to Birmingham about once a month.
Wendy, I also want to congratulate you on your wonderful(and fast)run to raise money for MUK. Now that I am off the dex, I'm more mobile( terrible withdrawal symptoms each cycle), and I'm trying to shuffle for a mile a day or even two.
Best,
Eva
Dear Vicki,
So sorry this has been a disappointment. I believe this is just a glich, and the stem cells will be in the bag soon.
Eva
Dear Dai,
During my last encounter with dex I had the dose spread out over a number of days, with a tapering off for the last two days.
Best,
Eva
Hi Dai,
Eva here. I really understand what you're going through.
I find emails much more exhausting than speaking to someone. Any chance we could have a chat?
I've got a phone package that enables free UK calls at all times. If this is a possibilty for you, then please email me on evayouren@lineone.net
Best,
Eva
Dear Tina,
I have no idea what is 'normal', but when I was on CDT I fell over twice due to extreme dizziness – in fact it was so bad that I thought I had perhaps been unconscious for a split second.
I am now only on Thal and haven't had any serious episodes of vertigo.
Best,
Eva
Dear Amelie,
In the UK, I was not allowed to have Thalidomide maintenance after my transplant, or any kind of maintenance. This does not mean that maintenance is a bad idea. The prohibition could be due to a number of reasons and could be revoked in time. There are studies suggesting that maintenance certainly increases the length of time before a relapse.
When I relapsed, I was allowed to have Thal and dex. I answered your query because I now have experience of being on Thal for a year and some of the side effects might be similar to those experienced by someone who is taking Thal as maintenance. My induction therapy before the transplant wasThalidomide, Cyclophosphamide and Dexamethasone.
Best,
Eva
