Eva replied to the topic First Week of CDT Completed in the forum Treatment 12 years, 1 month ago
Dear Keith,
So so pleased.
Eva
Eva replied to the topic Just been diagnosed with Myeloma in the forum Newcomers 12 years, 1 month ago
Hi Susan,
This is Eva. I think there are a number of things that might be concerning you.
If you wish to communicate with me, you can email evayouren@lineone.net and I am also then prepared to call you and we could chat.
I've had CDT and a transplant. I was very very afraid of having the transplant. I'm now four and a half years post…[Read more]
Eva replied to the topic newly diagnosed in the forum Under 50s 12 years, 1 month ago
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
Eva replied to the topic Raise your hand if you hate dex lol in the forum General 12 years, 1 month ago
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…[Read more]
Eva replied to the topic Second anniversary visit to haematology in the forum General 12 years, 2 months ago
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
Eva replied to the topic Round 11 RCD in the forum Treatment 12 years, 2 months ago
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
Eva replied to the topic Dry tongue and mouth in the forum Side-effects 12 years, 2 months ago
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…[Read more]
Eva replied to the topic First time diagnosed in the forum Newcomers 12 years, 2 months ago
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…[Read more]
Eva replied to the topic Yes it has bombed in the forum Treatment 12 years, 2 months ago
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
Eva replied to the topic Information/Experience on relapse and velcade in the forum General 12 years, 2 months ago
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…[Read more]
Eva replied to the topic Bendamustine C1. in the forum Treatment 12 years, 2 months ago
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…[Read more]
Eva replied to the topic Nature special on Myeloma in the forum General 12 years, 2 months ago
Hi Tim – this is Eva.
What form are these presentations in?
Hope you're doing well.
Eva replied to the topic Nature special on Myeloma in the forum General 12 years, 2 months ago
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
Eva replied to the topic The worst so far in the forum End of Life and Grief 12 years, 2 months ago
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
Eva replied to the topic The worst so far in the forum End of Life and Grief 12 years, 2 months ago
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…[Read more]
Eva replied to the topic Blood reap in the forum Newcomers 12 years, 2 months ago
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…[Read more]
Eva replied to the topic Lowest Platelets On Record? in the forum General 12 years, 2 months ago
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…[Read more]
Eva replied to the topic Lowest Platelets On Record? in the forum General 12 years, 2 months ago
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
Eva replied to the topic Lowest Platelets On Record? in the forum General 12 years, 2 months ago
Dear Dai,
Will be thinking of you and Janet on Christmas day.
Eva
Eva replied to the topic Zometa 'flu' in the forum Side-effects 12 years, 2 months ago
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…[Read more]