Yes keith he said words to the effect that they had been told not to do so many as often as they are expensive tests;
they used to go away to birmingham but then they got a machine and did them only on Mondays, Presumably the person trained to use it only works on Mondays. I think its difficult to complain given the price of the drugs but similarly, if they are continuing to use a drug that is not showing a response its a waste of the money for the drugs! But he was told not to expect any response in the 1st two months till it settles down.
[b]Will you be going to the info day at Newcastle Keith? or anyone else out there going to it. ?[/b]
Gill Peter had angina before his bypass His symptoms were chest pains that were worse on cold weather and had to keep stopping to get his breath when walking, in any weather. He used to use that spray that goes under the tongue. When he was on Velcade he was very breathless following a walk but it turn out to be Thrombosis probably caused by the velcade as he woke up with it the day after his second jab of it. He was given a D Dymer blood test which shows it up quickly before any other investigation. He was eventually shown to have lots of tiny clots in his lungs as well as big ones in his legs.
Min
David I love a good news story,
the important thing is as you say you feel in the best of health. No one can ask for more.
Curious about the anti biotics? what ones and have you been on them since your sct? Peter only gets them prescribed when he is suffering from an infection. Probably why his sct did not work. Why is the treatment so different all over the country. I know everyone is different but if most patients are getting anti biotics following an SCT why doesn't everyone get them?
I am really pleased for you David.Long may it continue, as I know you struggled to produce those cells
LuvMIn
Hi Chris,
they were simple re-hydration salts. I bought them as he was having such awful problems with leg cramps. He was on massive doses of frusomide at the time due to fluid retention.
Min
EXCELENT
Hi Chris,
I care for my husband too, I can identify totaly with the sweats, as my husband had it too, whilst on CDT. He responded well to CDT with little side effects apart from slight periferal neurapathy in his hands; he wa on mssive doses of mst too, as well as other drugs relating to his heart bypass.
We always thought the sweats were related to his poor kidney function, but they did go when he was responding well to the treatment.ie when he finished it. Changing bedding and pj's in the middle of the night was not pleasant. But at least it was not winter in our case! as he was diagnosed in August. I seem to remember he was taking those little sachets of salts and essential minerals as you lose so much of this when you sweat to much.
On the plus side he now has hot feet which he had not had for many years
Hope it stops soon for him.
Regards Min
I think I could do that, when I was 6 yrs old!
Min
Hi Chris
A very big welcome and pleased you dipped your foot in the water. You are amongst friends and can rely on us to lend you a listening ear when the coping gets too much.
Like you I have a husband with mm and its been a series of fairground rides in the past 18months with lots of high and low points.
I don't have a lot of people who really understand the predicament we find ourselves in but I do find it easier to bare for sharing the experience with some understanding friends on here and reading their problems which often put's our predicament in the shade.
Its like washing away my troubles when I see it on the screen, sort of cathartic, of only it would all go away life would get back to what it was……of course I know its not, but I can dream cant I.
As for the future tomorrow is another day and if you can get through today, you can cope with tomorrow.
As you have seen there is always someone on here with something in common besides the MM.
Next instalment.
Went to clinic today for new packet of pills, and result of last blood test. One was done on the day he started and another was done last visit 2 weeks ago. To see if he was responding to it.
For the past two days Peter has been on no Meds as it was his week off, but he had sickness and trots, which we have been unable to pinpoint to anything in his diet.
Mentioned it in passing to Dr today who wrote his script and sent him for urgent blood test. (takes 30 mins) Came back to find he had very low neutrophils.
Dose was changed from 25mg to 15mg. But a month for next visit.
The light chain blood test had not been done…… seems it costs a lot of money and the cost cutting has started so not allowed to have them done too frequently!
MY rash which had been quiet for quite a few days has come back with a vengeance. I think you were right Bridget it is anxiety as nothing else explains its re appearance.
Im sure if they were worried a shorter appointment time would have been given. So didn't ask but should he now hibernate and stay indoors? or carry on as before.
ItchyMin
And We are glad to have you back, I imagine Poole hospital are pleased they finally prised you out of your bed.
Don't go leaving us in suspense like that what happened next?
Luv Min
MMM
Peters muscles which he had worked on replacing for months went south!Muscle tone shot to that hot place your not allowed to type, after 4 cycles. Week as a kitten and tired also. The 3rd scyle started to show it had stopped working altogether but went on to do the 4th just in case it was a blip. Now on Revlamid, not so severe, but very tired and lethargicc.
Min
Snap Gill,
Peter was never a beer drinker, and still is not (or lager) but he sure looks like he has a beer gut poor soul. However this beer gut goes all the way round his waist!
Im going to keep an eye out because he always has the hump on didn't know it was a buffalo though LOL
How is the Pup? and when will we see him?
Luv MIn
Hi Jet,
You poor thing you certainly are going through the mill.
Your progress is very similar to my husband's who was found with kidney problems first,( read you blog)you are lucky though as it took a further 4months with kidney people before he was diagnosed with mm.
He is also on Revlamid and dex, having just finished his first packet.
It sounds like the dex is giving you most of your problems. It really is the devils drug. But make sure you take it early in the morning and then you can sleep when you need to. If possible have a really hearty breakfast on the dex days. I got into the habit of [b]big[/b] bowl of porridge or a good english breakfast for Peters dex days and its not too bad and sleeps like a baby at night. and in the evenings and afternoons LOL.
If you find you cant stand the side effects ask to have your dose halved until you get used to it. But then again if your on a trial possibly cant do that.
He seems to have settled down now but will know more when he starts his second course on Tuesday. the first two weeks he was totally washed out and ill but got better daily. His kidneys had once got better on Thalidomide but worse when he was on velcade now its different each day so don't know what will happen next.
I hope all you problems with the drugs side effects start to settle down, more importantly hope you have a good response to them.
Good Luck
Min
Hi David,
This subject is one that gets me mad.
Why cant you get an early pension/retirement from the government when you have a diagnosis of this type. It has to be better than begging for other benefits. As you say, it wont be a loooong retirement. Unless something remarkable comes on the market to cure the beast. Then they can chanage the rules. If big businesses can offer early retiremtn why cant the govenment provided you have done 30yrs of contributions.
I look forward to my happy retirement. Keep Well David
Min
Hi Susan,
What a shame that you cant have velcade, but cheer up, as you wont have to sit around in clinics waiting for bloods to be counted and chemists to make up your velcade. You can sit in the comfort of your own home and take a tablet instead.
All the trials have shown that it is a remarkable drug if it works on you and if for any reason it does not you can go back and demand your velcade and say I told you so!
My husband has just finished his first course of Revlamid after velcade stopped working and he has had some problems but not too bad. Good Luck
Min
Thanks you Gaye
The itching has stopped for Peter But continues for me so I am just taking anti histamins daily.
Peters nurse told us that for the purpose of travel insurance, Revlamid is classed as a therapy or treatment not chemo, and if it means that I can get cheaper travel insurance then I will go with her explanation.
I have paid into a travel ins at work for 20yrs and had no problems when he got mm; but when I am no longer working and have to buy my insurance like everyone else I know they dont like you to be undergoing chemotherapy. She told us that it is classed as a maintenance treatment once it works and he will stay on it.
Right now we are praying that the Tuesday clinic day will be posative and if so we are going to chase some sun to celebrate 40 yrs of nagging!
He knows I nag and I know when to stop so we get by, though he is testing my patience with the water intake at the moment.
His swelling is fine for now but if he doesnt keep the water intake up he goes haywire again.
I hope he is over the initial problems as he has just finished the 1st packet and doing OK. so more fingers crossed.
Hope your pain is getting better when do you get the RT
LuvMin
