[jeapal23Participant]

After five years of Mike having myeloma today he was told he need to,start treatment. His paraprotein levels are 55. And the X-rays have shown bone damage. He is. Starting on velcade on the 30tth April, they are going to let us go on a short oil day we have booked.

We are back at the hospital next week to sign forms and ask questions, any idea what I should be asking.

[eveParticipant]

Hi jean

Looks if your post,slipped down,and you had no reply.

I am sorry Mike has to start treatment after 5years. I take it he has come out of remission !?!!

Velcade did work for Slim,and managed to get to SCT,but he only got 6months before it came back. Asa drug Slim did not have many side effects,in some places they do it subcutaneous which means less time in hospital..As you know everyone is different.

Hope everything goes well for you Love Eve

[tomParticipant]

Hi Jean and Mike

Sorry about the relapse Mike, and am sorry I cant add anything to your post just wanted to wish you both well

Tom Onwards and Upwards xx

[jeapal23Participant]

Mike has not had a relapse he never has had treatment before. His paraprotien levels have been high for a long time the highest being 70 but they had been sitting around 45, they never gave him treatment because he was having no other symptons but now he gets bone pain and infections; they did xrays and have now decided treatment is necessary. Mike had a stroke in 2002 and this is why they held off treatment as long as possible. I need to find out how bad his bones as this is what has triggered the treatment plan. I cant sleep and im eating very little, I just hope the treatment works and that delaying things has not caused problems

[jmsmythParticipant]

Hello Jean

I know it's hard when your loved one has to start treatment. My hubby had no treatment for 6 1/2 years. He then had pain in his side which turned out to be small lesion on ribs. Radio therapist not concerned about it and did no treatment. Then some months after the consultant said it was time to start treatment. I know it is scary but you will get lots of support and advice on here. We did and still are. Enjoy your holiday and keep posting

Take care
Jean (another one 🙂 )

[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

[eveParticipant]

Hi jean

Ask for the reports on Skelton ex ray and MRI scan you are entitled to both ,if you find them difficult to understand ask them to explain them if you have no response take them to your doctor or find some one who can break down the medical jargon,

Has he had any ex rays done from time he started myeloma to now ???
They do not start treatment if pp are stable only when bone damage or pp start rising.

Again I can only say Velcade worked for Slim until he stopped taking it. Eve

[jeapal23Participant]

Yes, Eve. Mike has had X-rays several times before also bone marrow testing.

David, I hope your treatment goes well today. Mike is getting injections into his stomach and they will carry out the treatment at home, it is something new they have started at our hospital which is the Queen Elizabeth Hospital in Birmingham.

I have calmed down now and I'm writing a list of question for Thursday.

Thanks for the support

Jean

[andygParticipant]

Hi Jean.
I was told when I was diagnosed that although the delay in starting my treatment wasn't ideal it shouldn't effect my treatment or outcome. I had 18 months of back pain before I was diagnosed so how long I'd had MM before that is anyone's guess.
It's a good idea to take your list of questions with you and write down the answers given to each of them because if your anything like me you'll come out the consult and promptly forget everything that's been said. I know some actually record the meeting on a small digital recorder.
As to what questions to ask I would make sure you get phone numbers. Day case unit and ward – we have 24/7 access here so if I have any problems however minor I can ring in for advice. MM is no respecter of office hours.
Good luck on Thursday

Every day is a gift

Andy x

[andygParticipant]

Hi David
Just want to wish you good luck for your journey with velcade.

Every day is a gift

Andy

[MothasParticipant]

I'm just about to finish my third cycle of velcade subcut.
The injection itself is in to the fleshy part of the stomach and is not too painful.

The first couple of cycles i tolerated really well with only minor kickback from side effects. Tiredness some afternoons and a bit of nausea occasionally but nothing too bad.

My third cycle this has increased slightly but I've worked throughout and managed to do ok.

I've had some very mild neuropathy but again, nothing that's stopped me doing anything. Barely noticeable.

tom

[Author]

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