Dear Shirley,
Wishing you a speedy recovery,
Eva
Dear David,
By the way, I'm hopeless on a bicycle! I only learned to cycle when I was in my thirties. Today was the first day when I tried to run again after the cold spell. I'm in the north of Scotland and I ran on a country path. I managed to find a track that wasn't iced over! Hope you and your wife have a great time on the cycles.
Eva
Ron I agree about the migraines. I've taken some aspirin while not on any myeloma treatment and I've found that if taken very early on in a migraine attack, it can be surprisingly effective.
Eva
Ron,
You'd have to ask the original physician.
Aspirin has been in the news a lot. There are suggestions that it might lower the incidence of certain cancers. You could google that.
If you want a speculative comment about why someone might be told to avoid aspirin: well, it might be linked to the blood thinning properties of aspirin. This could matter in two ways. If someone is low on platelets or clotting capabilities in the blood then they might bruise easily or get blood noses. Too much aspirin might exacerbate that. Another reason could be that with some induction drugs, patients might be at risk of blood clots. When I was on Thal I was also on Warfarin, a blood thinning agent. I had to go to the docs every few days to test how thick or thin my blood was, to ensure I wouldn't get a clot. My warfarin dose was then adjusted carefully each time. This procedure requires as much stability as possible, so I guess if I'd been popping huge numbers of aspirin then the viscosity of my blood would have gone up and down a lot. In some rare cases, too much aspirin can cause bleeding internally.
Overall, for healthy people though, aspirin is being linked to all sorts of potentials including stroke prevention. It's now possible to buy aspirin in 'tiny' doses of 30g for those people who wish to take it daily. I think that anyone with myeloma shouldn't take ANY drug without checking with their physician because our blood chemistry is so complex and could change so fast as a result of treatment.
Best,
Eva
Dear Keith,
I seem to be in a simliar position to you. I haven't had a bone marrow test yet for absolute confirmation. Remember that for many of us this will be a journey( and sometimes a long one) rather than an event.
Thinking of you,
Eva
Dear Gill,
I haven't had any Velcade yet though I may need to do so soon. My comments are only based on my reading of various trials here and overseas and of other peoples' blogs.
One of the things that interests me is that Velcade is just beginning to be administered subcutaneously( under the skin, injections), instead of via IV. One trial overseas suggests that it is just as effective myeloma- wise, but with a lower incidence of neuropathy. Since neuropathy is one of the reasons that some patients have to stop taking Velcade, this is a big deal. I believe there's been a trial involving Velcade administered like this carried out in London. However, even if results are promising, changes take a very very long time to filter through. In the USA some oncs are starting to do Velcade injections. I think if we are well informed and discuss these things with our physicians then hopefully we will get a good balance between caution and implementing new modes of treatment that can diminish side effects.
Other findings which you can research if you have the inclination – are that Velcade might work just as well if given once a week instead of twice. Of course that depends on dose and any generalisation might not apply to an individual. Another thing worth remembering in that dex has been administered in large doses for years and is now being used with greater 'finesse' after studies have shown that sometimes at least, less is more. Again, it's pretty important to discuss this with your onc. Some studies have suggested that patients on a more 'tolerable' level of dex might even survive longer.
When I was diagnosed I was put on 40mg of dex amongst other things. My dose was reduced to 20mg after a short time and my treatment was still effective. I guess we need to 'whatever it takes' to battle the myeloma while diminishing side-effects. I'd prefer to take a smaller dose at first and see what happens. If the treatment is failing then I'd be happy to build up to a larger dose. Of course this would depend on having superb communication with one's onc and a sense that we can have some input in our treatment decisions.
Eva
Dear Ron,
A book you might find useful is 'Journey beyond Diagnosis' by Greg Pacini. You can order it via Amazon.
Eva
Dear Ron,
I hope your wife gets the appropriate meds for the nausea. Until this happens, she's going to feel very anxious as she will feel out of sorts all the time. A diagnosis of cancer is always a shock. One of the things that each person has to decide is what their relationship is going to be with knowledge about their illness. Some people will derive great comfort from a chat with a myeloma nurse and perhaps with someone who has been down the same path themselves and has adjusted well. Others need to find out a lot about the illness and its treatments and won't rest until they've had a chance to do a lot of research. Perhaps your wife can only excorcise her fears by being explicit about them. Yes, it's awful to have this illness but there are treatments and life can still be very very good after diagnosis. It helped me a lot to read blogs written by myeloma sufferers. The acor list is very useful( type in myeloma survivor acor into Google, or type in mmfordummmies). Your wife will start to see that myeloma can be a journey that can be scary but that it us possible to feel hope and to be connected to others and to enjoy life.
Best,
Eva
By the way, my number is 0186283 2148.
Eva
Hi Jonny,
This is Eva. I live in Scotland and was diagnosed two and a half years ago. I've been on a very interesting journey with haematologists. I would prefer to have a dialogue with you about this. I would be prepared to talk on the phone and call you back as I have free phone calls. Otherwise, my email is evayouren@lineone.net.
Best wishes,
Eva
Dear Bridget,
Just a short note to let you know I'm thinking of you. Sometimes Velcade doesn't work on its own but is ok with combinations of other drugs. I can see that it would seem wise to try Revlimid, but I imagine you might be able to come back to Velcade with something else or to try drugs that are in the same family as Velcade in the future.
Good luck,
Eva
Dear Roz,
You showed immense courage and determination. I'm sure you were a rock and a source of strength for Michael,
Eva
Hi David,
Well I guess I could walk a couple of miles or even further, now that it's a couple of years post transplant. After a month at home I was able to walk about a mile. My motivation was high because my husband was escorting me to a restaurant for lunch. However, my energy levels didn't ever come back to normal though quality of life is good. Some days I want to have a snooze in the afternoon! Maybe I'm just lazy…..
I've just had a wild day…. I've had to travel from the Highlands of Scotland to Edinburgh on a train. This is a four hour trip, on top of an hour to get to Inverness. Anyway, there was NO HEATING on the train whatsoever and we had to get help to leave the train as the doors had frozen solid. I had made the journey on my own and my feet and hands were so stiff I could barely walk or show my ticket when I arrived. I thought something was wrong when I noticed that people in my carriage were curled up like hedgehogs and they were all wearing hats or hoods and gloves. I should have taken photos!
Best,
Eva
Dear David,
It's disputable whether immunity survives properly after an ASCT. An additional point: I do remember reading somewhere that in order to be immunised successfully you need to be able to mount a proper immune response to the innoculation. That might not happen until a number of months after the ASCT, as your immunoglobulins are likely to take their time rebuilding themselves. I think a lot of people have their innoculations about six months to a year after the transplant for that reason.
Of course, I might be talking nonsense and you should ask your onc.
Best wishes with you recovery. I had my transplant at the same time of the year as you and I remember trying to walk a little further each day in the snow and slush in Edinburgh a couple of years ago.
Eva
Dear David,
I hope the rest of your time in hospital goes well. When I was at your stage of the transplant my brain began to shut down and I was only able to do the last thing to go – that is talk on the phone, of course!
Am including a photo I took today of our railway station house in Scotland. It's as cold as it looks outside, though inside it's toasty warm.
Eva
