[PerkymiteParticipant]

Ok, Started my Velcade Journey today 15th April.

After discussion about the treatment and the drugs to be used I had my Bloods taken and informed that if I can I should get my bloods done early in the morning on the day of my appointment. This would save me waiting for the results prior to having treatment. This is not a problem as I only live 500 yards from the Hospital.

Next, I was informed that I was being taken off LORON (bisphosphonate) and would in future be taking Pamidronate in its place. This will be infused once a month at the Day Centre.

I was also given Aciclovir (anti viral tablet) taken twice a day once in the morning once at night.

Edit: 20 MG of Dexamethasone given (2mg tablets) plus anti sickness

Then I was given the Velcade by injection in my tummy.

So far so good nothing out of the ordinary to report. My next treatment is on Thursday. I am having treatment Tuesday and Thursday.

Hope this helps you

Kindest regards – Vasbtye

David

[VickiParticipant]

Good luck David, we sincerely hope this works for you, quickly and that you bin this mm into touch again….then you can enjoy the nice weather, your garden and enjoy the things you like to do.

Keep your chin up,

Vicki and Colin x

[BADGERParticipant]

hi David
I am about to start cycle 5 of Velcade I have it once a week with cyclo and dex day one and two so not so bad I also have pamidronate once a month
my PP are now down to 4 so all good except the blip with a dose of pnuemonia been ok in the main
Keep well
Love Jo x

[tomParticipant]

That's what we love to hear David "So far so good nothing out of the ordinary to report"
Lets keep it that way My Friend.Vasbyte

Tom Onwards and Upwards 😎

[MothasParticipant]

Good luck with it David.
Yes, I have a blood test on the day of the injection too.

I'm in my third cycle of it now, and have tolerated it well.

I did get a couple of eye infections, apparently it's one of the rarer side effects, they call it "velcade eyes"
I've had some very mild neuropathy and a little bit of nausea for 48 hours afterwards in my third cycle.

[JoanneKParticipant]

Hi everyone.. I've not posted since the end of last year when my dad became very poorly with infections however I check in regularly to see how everyone getting on! Dad is doing really well again now and is about to start his fourth cycle of velcade. He is tolerating it well so he is able to get out and about and do the things he wants to do! It's great to see..

David I hope you tolerate this treatment well also and get great results from it!

I was interested to read about the eye infection Mothas.. Dad has just had to delay a cycle due to an eye infection.. It's not something that's been mentioned as a side effect I don't think!

Best wishes to everyone and sorry I've not posted for a while..

Joanne

[MothasParticipant]

Hi Joanne,

yup apparently it can make your eyes itchy and when you rub them you can transfer bacteria to them. I got two styes, one in each eye. At least it was symmetrical!

I had antibiotics to clear them up which sort of worked although I've still got a little bit of an infection.

They didn't stop the treatment though.

[jeapal23Participant]

David, good to here all is well. Mike starts this on the 29th

[ozzyParticipant]

Hiya David
I hope the Velcade works well for you. It got my pp's down from 49 to 5 in 12 injections but unfortunately I have had to stop it as the pn got so bad I couldn't stand it.I have been off it for two weeks and my feet havent come back to normal yet. I am now on Revlamid & dex and waiting to go in for a second sct.
Good luck
Ozzy

[HelenParticipant]

Dear David and Jo and Tom
Am now watching your Velcade journeys with more than just passing interest! It's marvellous how soon one manages to readjust to changing circumstances with this disease. I'm hoping you all do very well on it. Note to self ' don't rub eyes''
Still watching from the sidelines Helen

[PerkymiteParticipant]

I am going across to the hospital for a Blood Transfusion this morning. My HB has dropped below 10.

I think they were going to leave it for awhile originally but I have a trip planned to London, this Sunday for one week, I am going to see War Horse, a boat trip on the Thames and the London Eye before dropping in on my Sister for her Birthday. Then we are visiting friends on the South Coast before making my way back to Taunton.

Problem at the moment is Bone Pain. I am taking Tramadol/Paracetamol every 6 hours, Tramadol slow release every 12 hours and Morpheme as and when and it still b****y hurts 🙁 It has just got to get better in the next 4 days, got to, got to —it dam well will:-D

Kindest regards – Vasbyte (big time)

David

[sanParticipant]

Hello David, wishing you a wonderful trip, and so hope that you are able to get on top of the pain soon, my mum is doing well on oxycontin small doses regularly, the palliative nurses can help with pain control , but you may have already seen them? take care San xx

[mhnevillParticipant]

Hi David

How I sympathise about your battle with pain. I am going through the same thing and my Consultant doesn't want me to take anti-inflamatories because of my kidneys. I have had to start again. Like you I have a goal in view. Visiting my daughter in Luxembourg in July – she is moving there with our only grandchildren so I have got to be able to manage it! I have started physio but that is finding out other muscles to ache! However I am walking taller on my crutches!

You have a lovely trip to London, sadly doesn't sound as if the weather is going to be too good.

Love

Mavis

[PerkymiteParticipant]

Hi Ladies, Yes I saw the Palliative Care nurse today and she has now switched me onto Morphine based drugs, but retaining the Paracetamol. I take 40mg every 12 hours which is a lot easier. My backup has changed to zormorth which I place under my tongue when in pain. Hopefully this will hold it all in check until my next assessment on the 10th when we are doing to discuss radiotherapy on the troublesome lesions.

Kindest regards ? vasbyte

David

[VickiParticipant]

David

Hope you have a great trip to London, and equally hope your pain management is resolved. That's the one thing that gets Colin down! Pain!! So hope you can become a s pain free as possible. Never mind the weather just enjoy your trip 🙂

Vicki and Colin x

[Author]

Posts