[PerkymiteParticipant]

Well Hi there Richard and welcome to the forum.

I was diagnosed in July 2009. Like you I have had the SCT etc… but it gave me 2 1/2 years remission and I am just starting Velcade, in fact this is my first week. How long were you on Velcade before they switched you to Revlimid?

I am going in for a blood transfusion tomorrow, my first, for a low HB reading below 10. But the real problem I have at the moment is Bone Pain. They have switched my biophsophate medicine from oral to infusion and I was warned I would have some bone pain during the changeover but it is crippling me at the moment and the Tramadol, Paracetamol and Morphine do not seem to be helping much!!!

I look forward to your posts.

Kind regards- vasbyte

David

[PerkymiteParticipant]

Spot on OFF TOPIC 😀 😀

Kindest Regards – Vasbyte

David

[PerkymiteParticipant]

Welcome Ann, you will meet lots of good people here. I was diagnosed in July 2009. Had my STC in No 2010. MM has now reared its ugly head again and I have just started on 2nd line treatment Velcade with Dex. Apart from the odd bouts of bone pain, which can floor me, I am going well.

I wish you all the best of luck.

Pete : are you our oldest member? I am 70years 4 months.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Hi Sue, I have just started taking Velcade and Dex so am way behind you I am afraid. However, have you actually read the information that comes with the medicines. A lot of people just read the instructions on the Script or Box.

I was busy taking my medicines the other day, I had not been to the toilet for a couple of days so decided to add in Laxido. As a matter of passing interest I read the Manufactures information sheet. it said "Not to be taken one hour before or one hour after any other medicines". In the past hour I had taken my heart tablet, Anti Viral Tablet, anti sickness tablet and 20 mg of Dex ready for my Velcade injection. I was horror struck by what I had just nearly done.

If you do not already please read the [u]Manufacturers instructions [/u]and if in doubt go round to your local Chemist and ask the Pharmacist I always do now and they are always happy to help.

I do hope this is of some help if it is not why not telephone our resident MyelomaUK Nurse

Kindest regards – vasbyte

David

[PerkymiteParticipant]

That is truly a lovely post Tanya. It was great that you could be beside him as he took his final breaths in this world.

May your God walk with you at this sad time.

My kindest regards – vasbyte

David
x

[PerkymiteParticipant]

My Dear Tanya, I have tried very hard to answer your posting since you posted but I find these post so hard to reply to.

I hope Your Dad's end is peaceful and you manage to be by his bedside, that is all any of use can really wish for.

I like you believe in "something else" Nearly all religion's preach of one God and I have always believed that I am on a journey to that next life(?). It has always given me great comfort, especially when I lost my 19 year old son. I cannot say that I believe in any one religion's teaching because unfortunately most holy boots were written, if under guidance I grant you, by a Man! The world might have been a hole lot different if they were written by Women.

My very best wishes to you and your family and this time.

My kindest regards – vasbyte

David
x

[PerkymiteParticipant]

Some really good sound advice there Mary. My wife went completely OT but I bless her for it. I even had my own food that nobody else was allowed to touch, butter, jams, bread etc… Everybody got vetted regarding colds in the last two weeks and all had to use the hand jel. All talked to me with a good two paces between us and nobody could touch me. You might feel this is extreme but I am so pleased my wife did it,I felt secure in my own house. 4 weeks later when we had the clearance from the consultant things were eased off a bit. But even now if a child has a cold it is no visits to Granddad.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Hi Jean, I start on the 15th April.

You should defiantly go for Subcut (injection under the skin). My Consultant told me there is a major drop in side affects if Velcade is given this way.

If I am up to it I will post on the 15th under this heading and let you know what happened and how I got on.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Helen, No I did not tell her I had even planted them she was so puzzled to see this bulbs popping up in the lawn. I felt a little white lie was justified there. Next time I will plant them with a lot more care and slug protection 😎

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Sorry Tom >:-( it must have been me! I have just spent two weeks on ABs having a bad infection in the right lung. Very, very painful.

I thought I was in the clear first time for a long time I actually did not have any pain at all, not even a little niggle. Then two days ago bent down to pull out some washing from the washing machine and something went in the left rib cage/lung area. I do not think it is an infection, probably bone pain or a strain of some sort. I am taking a full dose of Tramadol plus 5ml of Morphine mixture in between and it still hurts!

I just hope it will not stop my starting Velcade + Dex on Monday.

Good fun this game :-/

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Dai, Sorry to hear you are having a tough time of it. I am just starting (Monday) Velcade + Dex as my second line treatment so I am a long way behind you I think.

However, I have total empathy with you on the Consultants reading up your notes before an appointment. The random Consultant system is used at Musgrove Park Taunton and I feel really annoyed whilst I have to wait for them to go through my notes and just about every time I have to say, "No, I am now on etc…etc..". I accept it is better use of the Consultants time but it is annoying all the same to the Patient.

Hi Helen, No, my bulbs did not come up, or not all of them. It was so patchy you could not make out the words I Love You. This means I can try again in Oct/Nov this year 😀

Kindest regards to all – vasbyte

David

[PerkymiteParticipant]

My wife works in an insurance brokers, retired now so does not do any selling or advising – not allowed by FSA rules. However we have always used City Bond but we have never had to make a claim!

The reason I write is to give you a piece of advice I was given early on by an Insurance underwriter. And, that was :

[i]Before filling in an [u]application[/u] form go to your Doctors and ask him to print out your medical record. Then go through it line by line with your Doctor highlighting which you should declare and which you should not[/i].

He said most claims were rejected because people think the fact that they had an illness two years ago does not matter. IT DOES. You need to go back 5 years minimum was his advice .

We do this every time now.

kindest regards – vasbyte

David

[PerkymiteParticipant]

Hey, Well done Andy – great news next count pp's =2 😀

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Maureen, I hope they get Ian's treatment going soon.

YOU must take proper rest otherwise you will be no good to man nor beast. Eve's suggestion is right. I tell Mo(my wifey and carer) I am feeling tired and then all 'phones come off and I rest for an hour or two hours sometimes. If Mo is out she knows I will put the 'phones back on when I wake. Mo does the same but she normally sleeps in the early evening or lays on in the morning when I am up and about. Look after yourself.

Kindest regards ? vasbyte
David

[PerkymiteParticipant]

Hi Nikki, I wish your Dad the best of luck on his transplant. Make sure he takes anti infection procedures very very seriously when he comes out of hospital. Be ruthless about it for at least 3 months.

Kindest regards – vasbyte

David

[Author]

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