Dear Keith,
I've always followed your journey: I haven't had the privilege of getting to know you, but all my thoughts and love is with you and Sue.
Eva
Dear Tanya,
I too am glad that you father would have felt your love and support.
Eva
Hi Trish,
Velcade is known for making shingles possible, but I don't know about chicken pox. Is Peter on Aciclovr?
As for exhaustion, when I'm on Velcade there are certain days when I fall asleep without much choice, and at odd times. I have some difficulty differentiating between this and perhaps a reaction to the stage of the dex cycle I'm at. I suspect that Velcade can cause extreme tiredness, but it isn't a constant thing.
Best,
Eva
Dear Maureen,
Sp happy things are working are working out. That's a superb response. Sorry about the shingles- I believe it can be very painful.
Thinking of you both,
Eva
Dear Tom,
Am very delighted about your response to PAD. Also enjoying your blog very much.
I understand you feeling nervous – I did too. It's so difficult to generalise about the effects of an ASCT. For most people, the first month is a bit of a write-off, though once home after nineteen days, I was able to read and draw. I got stronger incrementally, and after three months there was another leap. At that stage I could walk a couple of miles without any probs, cook meals, sustain mental activity for hours. I would still need a sleep in the afternoons.
Perhaps your trepidation is not just about physical discomfort, but about the fact that it feels 'monumental' in some way to undergo a transplant, irrevocable. Unfortunately myeloma does invite extreme measures. The literature swithers, with some articles suggesting that ASCT at first relapse is just as good, and other papers ( perhaps still in the majority) implying that a transplant is still a very important tool. I suspect you've researched this very thoroughly yourself.
I was quite conflicted on this topic and after my transplant there was this 'what if?' question hanging in the air. For this reason, I asked my consultant to just repeat induction therapy when I had relapsed after two and a half years. My induction was CDT, and after relapse I had it without the Cycloph. I got a very good twenty months out of this, with quite a bit of this time on a very low dose of Thal which enabled me to lead an essentially normal life.
You are never going to be sure whether you are one of these people who gets a longer time from ASCT then from sequential novel or even older treatments, or if the order would have mattered.
Sometimes we just have to take a leap.
Good luck,
Eva
Hi- I see no reason why an alternative treatment must be started. Many of us have had set-backs and interruptions and then gone on to continue a cycle. After a couple of lots of CDT I had some heavy side-effects with dizziness to the point of temporary unconsciousness. I stopped treatment for about ten days and then began again gradually.
After my first relapse, and after having been on steroids for a number of months, I got a week of myopathy: a kind of loss of muscle control. Again, my treatment was stopped and started again successfully.
So sorry about your virus- good luck.
Eva
Hi- I'm on my third cycle of Velcade. I've tolerated it fairly well- but it hasn't made a big dent in my paraproteins. My consultant was concerned, but my freelites have normalised beautifully. I think I'm a difficult one to track becase I am only secreting abour 5g/L when in full relapse. My original paraprteins were only 14g/L and during my first relapse( plasma cells over 70 % and broken arm): my paraprotein was only 2g/L and you could follow the illness with freelites, bone marrow biopsies and PET/CT scans as well.
Anyway, getting back to the Velcade, it was enhanced with dexamethasone and cylophosphamide. I get very tired the day after the Velcade and have a big sleep. The first two weeks I had a headache, a slight welt in the stomach where they did the subcutaneous injection,
but no big deal. Peripheral neuropathy very much under control.
I take anti-nausea mds for the cyclophos, something called Zantac for the steroids- do not take them on an empty stomach ever- they are potent stuff. They kick in about fourteen hours after taking them. You may need to consider what's best for you when it comes to timing. I got up today at four am and took mine so I'll be alert in the evening rather than staying up all night, though I sometimes enjoy an all-nighter if I've got good things to do and the house is quiet. And of course, a couple of days later, the steroid withdrawal comes and I have trouble walking about.
The main thing I'll say is not to suffer unnecessarly. I take pain meds, digestive sfuff, as Velcade can create two days of havoc with constipation or otherwise; I even take a sleeping pill if I can't sleep at all. Wuss, eh? Life can stil be good on Velcade- I did a trip to London on my last week including a sixteen hour bus trip and managed it. I'm still very much enjpying my food, doing my art work, and meeting new people and watching the Spring arrive in the Highlands.
Good luck.
Eva
Maureen,
This is Eva- am in London- can't write properly- am thinking of you, will contact middle next week.
Dera Maureen,
I'm so sorry about what you are both going through. It must be such a challenge to figure out what Ian might actually want for his birthday given his constraints. Perhaps for the MRSA to go away…..
I'm so glad Ian appears to be getting thoughtful care.
Can Ian play movies on a laptop or read stuff he likes? Music? Is he a gamer?
I hope you can get some time off occasionally even though that's probably the last thing on your mind. Can anyone else visit Ian, even with you? I don't an too sound heartless, but you are going to need some time off, when you can really let go for a few hours. The circumstances of your situation pre-diagnosis was really unusual, and I feel you could be forgiven for wanting to see a trauma counsellor and talking things through anf perhaps getting ideas how to mange the situation. I'm not saying that a 'normal'counsellor can't understnad, but you have both experienced multiple traumas and there are people who are trained to advise on such things.
Very best,
Eva
Dear Phoebe,
I can understand you not telling the family yet. Your husband may remain asyptomatic. I hope that your children will gain strength from how you've both dealt with adversity. It's a great privilege to be a parent – today I was able to speak with one of my sons on the phone. I've only seen him a few times in the last few years because of some of his issues with depression, but I felt that all the treatment I've had had has been worth it, so that today I was here for that conversation and that I could try and reassure him and be there for him.
Eva
Dear Susannah,
Love and hugs to you from Eva.
Dear Phoebe,
What a incredible story….. And how kind of you to think of us and to remind us of meningitis. It's also astounding that your husband has been able to accept vast physical challenges in spite of his amputations. He truly is behaving in a way that's deeply inspirational.
I am glad that he had so many years before his illnesss got worse. In that time your family would have grown up. It doesn't make it any easier though.
A couple of years after my transplant, when I thought I was in remission, but there was something hatching in my arm, I was trundling a heavy suitcase around China. The trip was a wonderful experience as I got to see my son in Shanghai, to visit a place called Suzhou, as well as Beijing. Some time after I got back my humerus broke, but at least not in the middle of China. I loved visiting China- we were there ostensibly for The Bookworm Arts Festival. I was very surprised how different the place was from my preconceptions. There were parts of Beijing and Shanghai that were just as full of shopping malls and designer goods as Dubai. One amazing experience was that my husband got to address a group of children of migrants in a school that had been set up by a British Iranian woman as a charitable venture. These children were not allowed to register at a normal school because their parents had come from the country to service the huge building boom. There was no heating in the school and the pupils had almost no books. It was a great privilege for me to make that trip and see those children. Life can and does go on after myeloma. Am including some photos I took at that school.
Please tell us more about yourselves.
Eva
Dear Maureen,
How often and for how long can you see Ian?
Have the rehab people gotten any expectations of the different ways in which Ian might become more mobile?
I wonder whether in time, someone could call at your place daily and assist with rehab.
Best,
Eva
Dear Sue,
Words are inadequate – we are thinking of your terrible loss.
Eva
Hi Dai,
So pleased results were kind of stable. The wait was really awful.
At my second last visit in hospital I was told things would be prepared beforehand so it would be faster – this was in Inverness – and yet, I also had to wait for three hours. The nurses were nice though and I was given a sandwich.
Because of my stage in the dex cycle, I had brought a pencil and sketch pad and I sat there drawing!
Last visit I was totally pooped, and even though I only waited for an hour and a half I kept falling asleep and sliding down the chair….. I had no-one accompanying me.
Maybe we need a companion to set up a tent or hammock… If someone took photos it might highlight waiting times….
Best,
Eva
