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Gill 13 years, 5 months ago.
Peter had the last injection of his first cycle of velcade today, he is looking forward to the next 10 days without meds. But from the outset he has been very breathless, whenever he walks or climbs stairs.
Its quite frightening to watch him looking as if he has run a marathon and reminds me of how ill he was before his heart bypass. He told the 'team' who are in the chemo ward and they said its a known side effect and as long as he is not 'struggling' he is fine. He also woke up with a nose bleed past two days. I know his platelets are low, but not yet needing to be topped up.
Any one had the same? Thisis all new territory to us On the plus side we also went to another hopital,fortunatly they are only a few miles apart to see the back surgeon and he is going to do two more vertibra kyphoplasty when he is next on his 10 days off meds. Exactly a year since he had the last 3 done! Even though he is on zometa, he is still susceptable to bone damage…….
Min
Hi Min I am lucky as I have only been breathless a couple of times ,iy must be a bit scary.I do occasionally have nose bleeds , nothing dramatic and usually when my platelets are a bit low .Good news about the kyphoplasty ,I just wish it was suitable for me but not so My mum who is 84 frequently tells me off for lifting anything as she worries I will break something , bless her ! One thing that has surprised me this week is how rotten I have felt on my drug free week The first cycle was fine but others have said this week is their worst also so I am not really looking forward to the next one Hope you have a good weekend and best wishes to Peter love Bridget x
Hi Min
My Mum has suffered with breathlessness the whole time she was on velcade, keep your eye on it and if you are not happy talk to the medical team about it. Mums was worse during the weeks she had the injection and got better on the 10 day break.
with love michelle x x
Yes I can concur with Bridget and Michelle. As I had mentioned some weeks ago, when Cecilia started on the Valcade, she experienced some frightening attacks of breathlessness although we assumed it was more to do with a flu that she was suffering from. She subsequently improved and has now learned to use her Nebuliser more often (4 times a day). Since she stopped her Valcade treatemnt mid-cycle two weeks ago, her aggravating cough has gone although she did become very tired and week. We discovered yesterday that her Platelets have increased (from 10 to 23) but her white cells are still very low. Valcade seems to be very good but, just like this flippin disease, its effects differ from person to person. I am sure that Peter will improve after his first cycle of treatment, just tell him to take his time while using the stairs and do exactly what his wife tells him!! LOL.
Kindest regards,
John
Hee Hee John
Before mm Peter knew how to do as he was told but since then he has become dextankerous… Dex has a lot to ansa for. But today he is feeling really good found a new bottle of stuff called Ferogobin b12 its for iron production and he started taking those q10 something or other tablets for his cramps and for the 1st time in over a year he slept all night until 7am. So dont know if its the velcade or a combination of all of the above but having a good nights sleep has done wonders for his mood post dex!!!!
He is also on a high as he as has for the 1st time ever learnt how to surf the net. Looking for a remote controlled tank of all things… Now I feel obliged to get one for him off santa!
Oh I forgot no breathless today at all must be the velcade as non since friday now.
Min
Hi Min,
I'm so glad that Peter feels a good deal better after a good sleep. Like you, I am convinced that the Valcade, although very good, causes a lot of other problems. Go on and get him the tank (you can always threaten him with it if/when he becomes canTANKerous again!!
Keep well,
John
You know what John, while I was doing some research and ordering one for Christmas,on the internet. He went out and bought one himself. It is darn clever fires bullets and sounds like a real tank. (look up heng long tiger tank) Now I have another one coming so will have to play with him… read into that what you wish!
ON a serious note this is his week off velcade and apart from being tired, and up several times during the night. Any one got a cure for that! He is no longer breathless. I am with exasperation and anticipation of playing war games.
Hi Min,
Thats good news about the breathlessness. Since Cecila has been off Vecade (for 2 weeks now) she too has recovered from that problem. I'm sure that after a while, Peter will develop a sleepng pattern, although it may not be similar to yours – ie again like Cecilia, he may be awake all night but sleeps during the day.In time, things will settle down. The good thing is, when he does sleep, you can then remove the batteries from his tank and WHOP him when he wakes up!8-)
Keep well,
John
Peters started his second cycle of velcade yesterday, and today he is breathless so its obviously the velcade thats causing it. But not unbearable. However he is back to using his stick as a result to rest on as he cannot walk far again.
Update on the tank…. he is using it to chase the cats who are terrified of it. But as a passtime it takes his mind of his mm so hey ho.
Fortunatly he plays with it mostly when I am at work so not bothering me too much.Yet….
Min
As well as the fact that we still have snow after 14days which is driving us mad. Today the cause of Peters breathlessness was revealed,
Following a clinic visit we saw the consultant who did bloods followed by a scan and xrays which showed up as a blood clot in each leg behind his knee.
That was the 1st kick in the slats followed by the news that the planned operation for Thursday was to be cancelled due to a tumour load in the vertibra. Next news that his light chains have gone up to higher than they were at diagnosis, although they have made a small response.
We spent the entire day from 9 till 5 going up and down stairs for a variety of tests and back and forward to the consultant.
His platelets are really low and he now needs an injection daily for the next 4 weeks to disperse the clots.
I am mentaly and physicaly exhausted. Peter is gutted and inconsolable followed by angry and frustrated. All in all it has been a long poxy myeloma day.
Its difficult to try to be upbeat right now.
Min
Dear Min no wonder you are both gutted Its hard to believe no-one thought to rule out dvt!! You are such a strong person I am sure you will find the reserves to fight this challenge as you have all the setbacks you have faced in the past What do they propose next? Is the surgery on hold until they sort the tumour issue ? When I first relapsed I was terrified when they told me there were new tumours on my spine , luckily within a short time of starting dex and cyclo it shrank completely so I am crossing everything for you and Peter that his will be the same Thinking of you both love Bridget x
Dear Min – The pox to myeloma. What an awful day for you and Peter not only with the news but how tiring it must have been. I have never heard of "the first kick in the slats" (I smiled a wry smile but not sure if I ought to) but it gave me an idea of what was to come. There's nothing I can say that could possibly take away the anger and probably fear of it all. It's one of those periods during our treatment that we have to confront and it is awful. Whenever I get these times I know I must stay with them until I can get my head around it and rebound. You are such a support to Peter and I know you will be again through this difficult time. Like Bridget I am with you and supporting you. Much love to you both Min.
Gaye xx
PS Yes, I agree about the snow. Although thankfully it has now stopped it is still on the ground and very icy. Come on sun, let's be 'aving you!
Hi Min
I am so sorry that you have had a chain of bad news regarding Peter's health. I have my fingers crossed for better news for you.
Nothing about mm is funny but I think I am so stupid I make myself chuckle. When you mentioned tanks I thought Peter kept fish:-/
You are right about Co-enzyme Q10 it really helps with cramp. My cardiologist told me about it when I started having night cramps due to taking beta blockers. Jumping out of bed and screaming in the middle of the night is not the best restful night remedy for anybody.
Best place to order them is from http://www.healthspan.co.uk you can get 200 mg capsules. Thank you to the person that told me of this company as it is much cheaper than where I was buying them from.
Stephen still gets very slight cramp in his fingers when he wakes up but it is nothing like the calf cramp he was getting. I think part of his hand cramp is due to the fact that he sleeps on his back with his hands crossed over his chest. Sick beast says it will save anybody laying him out when he goes:-S
love from Gillxx
Gill twas me who told this site about Healthspan, I have used them for years. Buying omega3 pills. Tip of today if you have an old dog (not your partner LOL) I have started givng my 12yr old lab one of there products called flexijoint and he is behaving like a puppy, with no aches or pains. Wish I could persuade Peter to take them…………..
I have no doubt the vet would have given me some really expensive drug leaving me pennyless.
Today is better than yesterday, Its Peters bithday, and has got over the shock and fear he was experiencing yesterday. Its amazing how different things look after a nights sleep albeit fretfull sleep. The injections of Heparin are challenging but will be beneficial in the long run so have to go with it.
Yesterday he feared he was about to slip off the plate and was wrung with a sort of panic attack. I bought him some 'tank' books and paints and yesterday is slipping away to be replaced by absorption in his new hobby. Attending his works christmas do which he has missed for 2yrs and being part of the work force again for as long as he is able. It gives him some purpose and takes his mind off the ever present mm. The poxy disease rules too much of our lives.
Min
Hi Min
I am so pleased that things are a little better for you both. Long may it continue
Gill xx
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