[MinParticipant]

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

[JetParticipant]

You can get one from Nicola Ewart at Myeloma UK: http://www.myeloma.org.uk/fundraising/fundraising-news/500-patient-diaries-sent-out-since-launch/

You can place an order to obtain these diaries (free of charge) for your patients by calling Nicola on +44 (0) 131 557 3332 or email: nicola.ewart@myeloma.org.uk

Your specialist nurse/consultant will probably also be able to give you one.

Good luck!

[KeithH17Participant]

Hi Min,have you actually been TOLD that cost is the reason why a light chain blood test will not be given?
If so you should complain most strongly as this is tantamount to refusing treatment that is vital in finding the reason for Peter's problems.
And keep at it until they do what you pay your taxes for and for what they are paid to do which is to treat patients at the point of need.
We still have a NATIONAL health service the last time I looked but for how long that's the worry?

Hope Peter gets well soon.

Take care both of you…Keith.

[brochoParticipant]

Hi Min what a nuisance for Peter to get the trots on his drug free week , just doesnt seem fair. I hope his neutrophils get themselves in order soon It beggars belief that they wouldnt do the serum free light chain test because of cost !!!Grrrr!! It makes me so cross In my case they are the only chance I have of getting an indication of whats going on other than scans or biopsy , both of which cost more than a blood test , so I hope this isnt going to become the norm Sorry to hear your rash is back , it must drive you mad This week I have been so exhausted its untrue and to top it all I have conjunctivitis in both eyes , so no mascara Next week is my week off so I am hoping to feel a bit more lively love Bridget x

[GillParticipant]

Goodness

I don't look for a couple of days and everyone seems to be under the weather. C'mon you lot all get better. Stephen has also had a health scare displayed all the symptoms of a heart attack. Would not go to A&E and mentioned it "in passing" to the chemo nurse when he went for his velcade infusion the following day.

Had all the tests and they are now looking as to whether it might be Angina but doubtful. More likely an "unexplained blip" whatever that is.

On a lighter note regarding the trots (I am sure I have told this story before but one repeats onself after 60) I worked with a woman some years ago whose husband was a teacher. He received a note from a mum that told him that little johnny had been off school with dio dia dre dier all crossed out and she had then written the quick sh*ts

[MinParticipant]

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

[KWilsonParticipant]

LOL re 'looks cheap'. I asked my neighbour to collect my prescription for me one month (it has to be ordered, our pharmacy doesn't keep it in stock) and she said "Oh, I didn't leave you medication on the step, I thought I'd wait until you came home." When I told her the one month's supply was £4,000 she said "Oh, my Goodness, if I'd known, I'd have driven straight home for fear of getting mugged!!!"

xxxxxxxxxxx

[RozParticipant]

All the best to Peter Min

Don't think about what happens when this stops working, just live and cope day by day. Remember, if Peter is at home having his Revlamid then things are fine. Michael never got to go home to start his.

Please think positive. Fight and live for today and bug— what happens next.

Roz

[mikeyParticipant]

Hi Colpot,
Thats, amazing news for all of us, thanks for sharing it with us.
I am on Revlimid, at the moment, 15mg for 21 days each month, and 40mgs of dex over 4 days, once a month, as a maintenance cycle.
I am about to start my 9th cycle, so a long way to go to catch you up ;-)but my paraprotiens are down from 22 to just 2 and stable, so I am coping ok with revlimid although i always have probs with the Dex, which had to be halved in dosage for me to sleep and function properly , but all in all coping ok.
Long may you continue Colpot,with your UK record, and i hope i get the chance to reach Cycle 38 too.
Take care, and regards to everyone on here,
Hugs
Mike

[MinParticipant]

Had a clinic today 1st one in 4 weeks so finally got the results of the four weeks after 1st packet..
Peters light chains had dropped almost 75% in the 1st month. They are now down to 1918.from over 8000. the neutrophils are still low, but his dosage has gone back up to 25mg after the last lot going down to 15mg.

The bad side effects of sickness and diarrhoea leg pains and cramps have now calmed down, generally he is looking well, rather than the grey colour he was at this stage on Velcade. We have to ring up on Friday for more up to date light chain results following which we had the OK to go on holiday and the Dr is going to give him some kind of human anti bodies before we go to keep him well.
Bridget, the week off meds made him achy and sniffy, unable to sleep without the Revlimid to help, but otherwise a big improvement, and looking better going forward. Don't want to count chickens before they hatch but, I am quietly confident now.
Luv MIn

[Author]

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