Hi minimouse,
Thanks for your post.
Just to clarify, he had a cycle of Revlimid and his FLC's came down to 250. On holiday he had the second cycle, and then picked up a pneumonia so the cycle was paused. It was restarted, but the infection resurfaced back in UK, so Revlimid was paused again. The Revlimid was then started again (cycle 3) but it was no longer working so he was switched to Dex, Velc and Thalidomide.
I know what you mean – my dad looked and felt very well even as his FLC's were rising into the several thousands. In October he went on a mini-break and was full of energy and enthusiasm…he got back to find out the FLC's were on the up and up. He looks and feels a lot worse since treatment began!
I know the doctors worry about his kidneys as his FLC's go up, but so far they appear to be OK.
You're right – nursing staff don't have time to monitor nutrition, but I think he is now on Complan/related protein drinks, so I hope that helps. It's a real struggle to get him to eat anything, no wonder he feels weak and dizzy!
Thanks again, Bridget, I really appreciate your posts. Yes, his bloods are being checked and he is given certain things intravenously when necessary. His potassium is low so he takes an oral supplement.
This Friday we find out how his free light chains are; I cannot imagine they will be healthy because he went 2 weeks without a drop of treatment, after the 2-week bombardment of dex, velc and thalidomide.
Hi Bridget,
Thanks for your post. He was diagnosed with myeloma in January 2007, but he's never truly accepted that he has it.
At first he wouldn't tell anyone. Once his first treatment was successful, in summer 2007, he said he didn't think it would relapse for many, many years. Talk about tempting fate! It relapsed 2.5 years later, sadly. And he has chosen to never research the disease online or anywhere else – he doesn't read leaflets the doctor gives him, even. So in a way you're right about him getting used to the idea of having the disease.
It's his occasional confusion that is confusing me right now. He can be totally out of it, which is upsetting.
David – thanks for that tip, I will chase it up. Sounds ideal. Did you get yours from the hospital or from elsewhere?
Nigel – thanks for your insight and thoughts (and compliment!) My dad isn't off food by doctor's orders, he's just barely eating of his own will. It's a combination, he says, of nausea and feeling bloated the whole time, which we suspect is linked to his depression.
He talks quite openly about his situation and says he wants to fight on, but other days he can be quite dramatic. If I can be honest and sound a little unkind for a moment, he hasn't really shown a great deal of thought for his carers lately, in words or deeds! We forgive him, of course, because of his condition and his plight. But he often says what's on his mind, he isn't holding back!
He doesn't want to see a psychologist, explaining that he has a 'supportive family'.
He is hospitalised at the Royal Marsden and overall he likes the team and appreciates the care they give him.
I'm sure he's bored but part of the problem is that his depressed state means he won't do anything but sleep and watch TV. He's not reading & didn't want us to bring him his laptop for e-mail/internet. We're really hoping the anti-depressants have a decent effect (although they are very mild).
Thanks again to you both.
Dear all,
Thank you for your replies, input and concern. It's great to know we're not alone.
I hope I don't bore you all with an update of where my dad is at. Here goes.
So he went into hospital 2 weeks ago with low platelets which were causing bleeding. That has now been solved by transfusions. Unfortunately, and rather predictably, he picked up some kind of urinary infection in hospital which left him unable to wee. It doesn't appear to be related to kidneys, but he has had to be put on a catheter to release all the wee. He has a steady flow and the colour is 'good', apparently.
BUT, his mood has taken a massive downturn. As of the last week-and-a-half, really, he has been depressed, quiet, wanting to stay in bed all day and he continues to eat very, very little. Not eating obviously is leading to muscle wasting and extreme lethargy. We're stuck in a vicious circle.
The staying in bed all day also led to a chest infection – just as his doctor predicted. The pneumonia appears to have responded to antibiotics and his temperature/blood pressure/oxygen have been normal for a few days now. He's had pneumonia twice before, and both times were worse (in 2007 he could barely breathe and went to hospital in the nick of time).
On Sunday he was the worst we have seen him – depressed and very confused/strange. It was as though he was 'sleep-talking' and could barely keep his eyes open for very long. A lot of what he said didn't make sense.
Yesterday he seemed better, but he still has daily diarrhea because he is full of antibiotics and almost no food whatsoever. Obviously a catheter and diarrhea is not good for a man's self-dignity, either…
Add to this the fact he is still saying he is unable to eat anything, his water consumption is appalling (the nurses reluctantly keep putting him back on a drip), and you can tell we're in a spot of bother here.
His doctor will review blood/urine tests this Friday, but he hasn't had a drop of myeloma treatment in 2 weeks until today, when he resumed the thalidomide (at last). I suspect his free light chains will be up again, because whatever effect his treatment had will have surely been eradicated by now…?
He only lasted 2 weeks on dex-velcade-thalidomide before the platelets crashed. Hopefully he will re-start the full treatment next week, but without proper nutrition it will be very hard to manage.
His doctor also says that the confusion could [i]either[/i] be as a result of depression/being holed up in a hospital room for 2 weeks, [i]or[/i] as a result of the myeloma worsening. I've not heard of confusion as a by-product of myeloma. have any of you?
So right now we're all looking for some hope. Hope that he'll eat, hope that his depression will lift (he's now started on some anti-depressants), hope that the treatment will succeed in battling the myeloma, and hope that he'll come home. Being in hospital for this long is not good for your mood or your infections.
The disease is aggressive this time round, and he's 76, but he's been so resilient in the past.
Thank you so much for your reply, minimouse.
You're quite right – until now, he's certainly been a tough old man and I don't think he truly appreciates how well he's done to respond to so many drugs (as well as infections and a fractured hip caused by a freakish accident in 2009). Sadly, despite being a very smart man he has chosen ignorance as regards myeloma and doesn't ever look at this site or any other site, so he can't fully realise how well he's done.
Here is an update. His treatment of dex, velcade & thalidomide was suspended on Monday as the doctors tried to raise his platelets and red blood cells. Both are now up to normal levels and his bleeding has stopped. The endoscopy revealed nothing untoward in his digestive system.
But other problems have surfaced. On Thursday, he felt an overwhelming urge to pee but nothing would come out. On Friday morning they installed a catheter and urine has been passing plenty ever since. This, I'm told, is a good sign and the colour of the urine is also good.
He had been complaining of shivers even though his temperature was normal, but last night (3am) his temp rose to 38. This is odd as he has been pumped full of antibiotics since he arrived in hospital last Monday. Nevertheless, the temp has now gone back to normal but he is complaining of nausea and generally feeling unwell. Tests haven't revealed anything yet, other than low magnesium and potassium – but then he is barely eating a thing. Malnourishment = fatigue, too.
Just back from hospital and he's definitely worse than he was yesterday. It's so hard. Nobody knows if he's suffering from the illness itself, the treatment or just intoxication due to having so many drugs pumped into him since November. The not knowing is tough.
Has anybody else been given this line of therapy – dex, velcade and thalidomide all at once?
