This topic contains 16 replies, has 7 voices, and was last updated by 
Elizellen 13 years, 8 months ago.
Dear all,
I've been reading your informative and often inspiring messages for some time now, but this is my first post.
My father, 76, was diagnosed first with MGUS then a couple of years later with myeloma in January 2007.
He first had CDT followed by a stem cell transplant, both of which were successful, in the spring and summer of 2007. He tolerated the treatment well and remained disease-free throughout 2008.
In the summer of 2009 his free light chains started rising again, but no treatment was deemed necessary until April 2010, at which point he went on Velcade. Some side-effects, including shivering and tiredness, but mostly tolerable. The disease was brought under control, and after three full cycles his treatment was ended and we were told to expect around 1.5 years treatment-free.
Unfortunately, just a few months after stopping Velcade in July 2010, the free light chains started rising severely and he was put straight on to Revlimid (we're now in November 2010). The first cycle, which ended early December, was very successful, lowering the free light chains from around 4000 to 250.
For some reason unbeknown to me, his haematologist gave him the OK to travel to South America in December, just as cycle 1 finished and cycle 2 was starting. Despite my fears, and the fact Revlimid can give you deep-vein thrombosis and increased risk of infection, he went. I knew it was a mistake.
Sure enough, he came down with an infection out there which turned into the beginnings of pneumonia. He was treated at a terrible private hospital which didn't even keep him in overnight, merely sent him on his way with some oral antibiotics which got rid of the bulk of the infection and made him feel much better, but…
He made it back here for Christmas, but 10 days later, on 30th December, had to go back to hospital with an infection. It was either a new one, or the one he caught on holiday which hadn't properly gone away. Nevertheless, he spent about a week in hospital on IV antibiotics.
The Revlimid was resumed when he was discharged. Frustratingly, despite fantastic results after cycle 1, it stopped working. His free light chains were soaring again into the thousands. He was also very tired, weak and losing appetite, a sense of taste and his weight. I can't help thinking that the ill-fated holiday played its part in this.
He has managed, so far, not to have any kidney or liver troubles.
The decision was taken to put him on an intensive velcade, dex & thalidomide combination therapy, starting 2 weeks ago. For the first two weeks he was very tired and weak but tolerating the drugs, with minor diarrhea. But over the weekend just gone, things got harder. He was too weak to walk and remained in bed. He suffered a short nose-bleed, then blood in his diarrhea and blood leaking out in the night onto his bed.
He was taken into hospital on Monday for platelets and blood transfusion as his red cells and platelets were so low. He was too tired to even stand up.
Now it's Wednesday and he's had several sachets of blood pumped into him but he's still suffering from rectal bleeding. It's not constant, and it's only happening when he sits on the loo, but it's obviously deeply worrying. He remains fatigued and his morale, which has never been great, is low.
Does anybody have any experience of this powerful combination therapy, or any idea why the bleeding won't stop despite platelet transfusion?
Hi Edo
Well where do I start, Im pleased you found your way to the discussion forum and sorry to hear about your Dad, sounds like he is a tough old man, who is going through the mill right now. Velcade dex and Thalidomide are a real toxic combination and I am not surprised he is tired.
I have no advise to offer on rectal bleeding other than my husband had it when he was put on CDT, following which he had a rectal exam by camera and it was found to be haemeroids. ( He will kill me for telling anyone)
they actively treating him for whatever is causing the problem?
Have you asked what is causing it or where exactly it is coming from. I have learnt that velcade can be used again and combo therapies work where one does not so no worries but perhaps a smaller dose will make him better able to tolerate it. For his age he has done remarkably well, as only very fit patients are considered for for sct
I think the answer lies with his Dr's who know what he can tolerate, perhaps you could arrange to arrive for ward rounds so you can ask some pertinent questions, or speak to the ward sister.
I hope he responds well and please let us know how he gets on.
MIn
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?
Hi,
I take Dex, Velcade & Thalidomide – 40 mg Day1 -4, Thalidomide daily, Velcade 1.3 mg/m2 Day1-4 and Day 8-11 in three week cycles. This is all done in outpatient and home care. I have side efects on Days 5,6 & 7 – that is slight tigling, lethagy (exhaustion). But apart from that I tolerate the drugs very well (I even enjoy the Dexaamethasone)/ I'm younger than your dad (52) in good general health, and I'm fairly fit. I'm alos fotunate to have normal white blood cell, red blood cell and platelet counts. So its not comprable, however the fug regiment itself is not causing me any major problems. Can you get the doctors to explain? I tend to be inquisitive enough to get answers, as does my wife, and I chose a doctor who communicates and explains.
I wish you and your dad the very best of luck. Velcade is a great drug. I hope he comes throough this quickly.
N
Maybe the bleeding is caused by the results of constipation as the drugs do tend to 'bind' you and when you do manage to go to the loo, it can result in very hard stools which cause bleeding and as you say his platelet counts are low, the bleeding may be worse because of that.
Hope he gets back on track soon.
xxxxxxxxxxx
I eat prunes in good quantities (5-10) – i soak them – this keeps me loose. I also have glycerine suppositories in my medicines bag, but have only needed them once – but I'm afraid that the bleeding might be to do with platelet levels so perhaps you should see if they are below normal and raise it with the consultant.
Good luck
N
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.
Hi Edo, If you can tackle the food problem I feel it might help him with his other problems.
How about a Complan drink made up with milk, ice cream, jelly and a fruit (I used banana or mandarins). I had this drink in hospital after my SCT I just could not eat anything and even water tasted foul. You can get different flavoured drinks and mix different ice creams and jellies to match.
Kindest regareds
David
Hi I'm not a doctor so what I say has no real authority, but I'm a doctors son and have spent the last twenty years working in nmedicine and have a science background.
It might seem obvious and trite, but your dad's problem is not so much Myeloma, but that his general health status is unstable and slipping, for variuos reasons, including the Myeloma.
Health status is all about little things, degradation starts with a small change which spirals into crisis, recovery is the same, a small victory leads to minor improvement, which in turn allows another victory and so forth – a doctor's job is to turn it around to restore that delicate dynamic balance that we live in permenantly and which is so much more fragile than we realise. When you are living with a chroinic disease, keeping that balance is really important – diet exercise, attitude etc.
As for his depression – goodnes what I'm going to say is hard for someone who hasn't been there to hear. He probably thinks that he's had it, that this time he isn't going to make it through, that his life is over and what is worse he can't get out and do the things he needs to do (we all have a bucket list) and he can't even talk about it, because of the taboos (we spend a lot of energy caring for our carers, when in fact its pretty hard dealing with our own situation and sadness and sense of loss). Of course this doesn't have to be the case, he will hopefully get over the urinary tract infection and the catheter can come out, the diarhea will stop hopefully and he'll be allowed to go back on food. Of course hospital food is horrid, so see if you can take him in things that he loves to eat (when he comes of the drip). If he can't talk to you, and I expect he can't as he doesn't want to frighten you, it might be worth getting a good, old enough but good looking (he needs to build trusting rapport) psychologist to talk to him there is probably one on the team, but of course he has to feel drawn to him/her and want him or her to come and then be prepared to say what he can't say- what's really important is closure and coming to terms with our mortality and then understanding that the only choice is to make the most of it. Of course the really depressing thing is when the disease, or our nature (I'm a really lazy bum) stops us from doing that – that's when I slump – and I blame myself.
I reckon he is really bored as well – and miserable and uncomfortable. It can, might and probably will get better – but obviuously he is walking a wire and whilst not being overly alarmed you should be aware of this – and of coourse so should he – there are probably a bunch of things he would like to get done – and this should shake his depression –
Where is he hospitalised and what are the medical staff likeN – how does he get on with them?
I'm sure I've overstepped the mark and apologise for that, I took Dexamethzsone today, so I'm pretty hyper.
Take care, good luck, bon courage – and he's really lucky to have you.
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.
Hi Edo its possible your dad may just need a little longer to get used to the idea of having myeloma , the other infections etc must complicate things He does sound like a very strong minded person so hopefully the anti-depressants will be the jolt he needs. It is always hard to see our loved ones going through something like this and feel powerless to help but it is up to your dad now and from what you have said he will fight it , hopefully sooner rather than later for your sake love Bridget x
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.
Hi Edo I suppose they are checking your dads blood results regularly? Last year my father-in-law became extremely confused and it was because his sodium levels were very low, it might be worth double checking they are watching out for that .I do hope things improve soon love Bridget
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 Edo,
I would not be too concerned about the free light chains. I read your posts again, did he have just once cycle of Revlimid before going off on holiday with no further Revlamid until his return? Is this why he had the velcade added to the Revlamid? My husbands light chains were at over 8thousand when it was decided to put him on Revlamid, By the time he actualy got it, two weeks later the Doc reckoned that they were likely to have been at 10thousand when he started. Yet he looked well!
I think once they get him turned around from his depression he will pick up again. some people chose to bury there head in the sand and only when they hit a big blip does it sink in that they are not as infallible as they thought they were. Almost like 'I will show them they are wrong with there diagnosis! ' It is possibly sinking in now that the Dr's were right. The hospital can provide complan, and other powdered and liquid varieties of proteins; Its probable that the nursing staff don't have time to oversee him 'eating ' his meals and its well documented that older people suffer badly from poor nutrition whilst in hospital.
Bring this up with his Dr and ask them to ensure he is eating properly and being helped if necessary.
I used to and still do worry about the numbers of free light chains but lots of people can live in synergy with high numbers which sound massive. My husband was at 5k when diagnosed and I thought 8k would kill him; but he looked and felt well? The velcade made him look and feel ill!
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