[EvaParticipant]

Dear Maureen and Ian,
Delighted about your outing. Hope Monday goes well. Am living in London -alternating between B&B and hospital. Am about to begin 3rd course of c-Pace. Am weak but fine. I’m responding to treatment. Was even able to met a friend in an Italian restaurant for lunch today. Will possibly have second transplant. By that I mean in addition to the one I had five years ago.
Eva

[EvaParticipant]

Hi Maureen,
Thinking of you and Ian. So glad he can come home. Am on heavy chemo so difficult to write.
Eva

[EvaParticipant]

Dear Ross,Janet & Family,
None of us will ever truly be able to understand how truly special Dai was because we didn't know him as you did. However, my deepest condolences.

Eva

[EvaParticipant]

Dear Jo,
I don't know if I would use the expression 'low moods.'
My adrenal gland seems to stop working.
When I am on 4 days of dex at 20mg a day, then it takes me a full for days to get over it. Then I have another four days of the same, after a four day break. After the second time, I am worse, and there's a day when I can't walk and require a wheelchair. By the way, I am normally fit and can walk a mile without any trouble. The second time each cycle takes me five days to get over. The transformation is very sudden. I go from barely being able to walk to the bathroom to being able to walk again.
Eva

[EvaParticipant]

Dear Maureen & Ian,
So sorry to hear about Ian's mum.
I do hope the operation is a success. Nov 12 is like an anniversary for me: it's when I had my transplant.
I know the Western General quite well.
Best,
Eva

[EvaParticipant]

Hi Maureen,
This is an amazing milestone considering what has happened before. It's time to give thanks, and yes, to work out how to best be there for each other.
No matter how physically compromised we may be, there are still choices we can make about how we spend the day and the vibes we give off towards our partners.
Having said that, there are going to be times when we are overwhelmed by the intensity of our feelings and the scale of the changes we've had to endure.
Thinking of you,
Eva

[EvaParticipant]

Dear Maureen,
Thinking of you and Ian.
I remember how happy I was to come home after my stem cell transplant.
Eva

[EvaParticipant]

Dear David,
Very sorry about your sister in law.
I've beat you to the Revlimid by one week. I'm not looking forward to four lots of 20mg of steroids – a three day break and then four more lots. I behave ok on the steroids but have dreadful withdrawal probs every time. I'm also on Cyclophosphamide which has a tendency to create nausea.
I'm not crafting a coffin like you, but the least I can do is clean up my house a bit and sort out all my inheritance issues. Easier said than done. However I'm grateful for each extension and if the Rev works I might be eligible for another transplant.
Best,
Eva

[EvaParticipant]

Dear Jo,
A very crude response from me. When you have myeloma, one type of your plasma cells replicates and crowds out the good stuff. The most common way to measure this is via a test that weighs the levels of these so-called monoclonal cells or paraprotein in grams per litre(G/L). That's one of the reasons they take blood samples.
I think that all of us have had increasing levels: one of the aims that a consultant will have will be to find a way to lower or eradicate these levels. Some patients get them down to zero for a while – that's sometimes called a 'complete response.' Other patients do well for years on various levels. It partly depends on what happens to the rest of your bloods and body. Perhaps you can have a brief chat about this with Ellen the myeloma nurse who works for Myeloma UK. Her job is to talk to patients and carers on the phone, so don't hesitate – she's excellent at her job.
Best,
Eve

[EvaParticipant]

Hi Eve,
I'm in London for tests and new treatment. Everything rather overwhelming so this response will be very brief. You can buy potassium tablets – check out a range called 'Solgar' on the net or go to a good shop. Of course, it might be an idea to check with consultant whether this is ok. I take potassium about once a week and it's kept my values within range even though on very heavy treatment.
Best to you and Slim,
Eva

[EvaParticipant]

Hi- I agree that it would be great to have a separate listing for any interesting scientific articles or findings about different kinds of treatment. It is easy to lose such references once we've encountered them:having them in a file would be nice.

The self help articles such as advice about nutrition or exercise or highly experimental therapies can be immensely useful/fascinating but they are in a different category – 'alternative'. Putting these in a separate area means we are allowing patients to access information on them but we are not implying that these methods have been assessed by more rigorous clinical studies or evidence based medicine.

Eva

[EvaParticipant]

Dear Mary,
You can ask for sedation, but this must be arranged beforehand. The sedation lasts long enough for the prodecure: the person doing the biopsy can top it up if necessary. Afterwards you may feek groggy for half an hour or so, perhaps you might need to have a rest or have someone travel with you.
Eva

[EvaParticipant]

Thanks Dai- it's not just a quality of life issue though my response made it sound like that. I have progressed while on Velcade……
I will take a second transplant if my onc convinces me that's my best option.
Based on my response to the other one, I might expect a remission of a year.
Best,
Eva

[EvaParticipant]

Hi Eve,
My consultant has suggested the idea of another transplant, and I'm well within the age for such things.
Not looking forward to it and wonder if we can delay…..
Eva

[EvaParticipant]

And I sometimes wear a scarf when I get cold….
Eva

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