[smilneParticipant]

Hi all

My father has recently been diagnosed with mm and starts VTD on 23 Jan with the hope of SCT later on.  After several months of complaining to the docs that he had pains in his ribs and back, he wasn’t actually diagnosed until they did bloods and found he had hypercalcemia (13 Dec 2017) and could hardly walk as he was in so much pain with his back. Dad also had a very bad accident in Oct 2016 and fell 23 feet off the top of a scaffold whilst at work and broke his pelvis, 10 ribs (multiple fractures on several ribs), small bleed on his kidney and brain and managed to come through that!  He couldn’t walk for 4 months whilst he was healing and he started to feel ill in about July 2017. Docs kept saying it was muscle pain due to his recuperation from the fall and needing to build up his core muscles again and it was never picked it up. My dad is 69 and was a very active and strong man before his fall and this illness started, seeing him as he is right now is somewhat devastating, let alone the thought of him having cancer.

I have to say it was such a shock and all the family were completed devastated (mum and 2 siblings). Now we have got our heads around it a bit more and having the myeloma website with so much information has given me such hope, that albeit only a treatable cancer (I pray he gets some kind of remission for well as long as possible, like everyone else does).  No doubt I shall be on here in a lot over the next months/years for advice and support and would welcome any tips. I shall let you know how the VTD goes over the next few weeks.

 

[tmcintyreParticipant]

Hello,

Good to meet you albeit in these circumstances. I hope your dad does well on VTD. The one tip I can give you at this stage is for dad to report if something is worrying him eg if he feels sick on the treatment or has diarrhoea or tingling in his hands and feet or a rash.  There is usually something to help with this to make life better.  Also, it seems that most people are told that they will have 4-6 cycles followed by SCT.  Not everyone follows this path (my husband didn’t) and adjustments might have to be made along the way but there are lots of drugs available, some might give him side effects, some might not, he might be very tired.

It is a shock to everyone and takes time to sink in but once you get into the rhythm of treatment it becomes your life and you get on with it as best you can.  You might find that dad actually begins to feel better once he’s started on the VTD.

Let us know how he’s getting on.

[peterlParticipant]

Hello,

Yes, it’s a complete shock to the individual and their family when MM is initially diagnosed.  But take heart, and although dealing with MM is a long haul process, as the post above says, there are lots of drugs…  and similarly I chose this latter path rather than an SCT, since my health wasn’t that great prior to the diagnosis, and was advised against an SCT.  My version of MM is the lambda free light chain type, and I can only say that the VTD treatment completely blasted the MM nasties, and within a couple of months the FLCs were down to the permitted range for a healthy person.  I personally never felt sick, or had any PN (tingling in hands and/or feet), but I did suffer badly from diarrhoea.  But it’s a smallish price worth paying I believe.  All the very best to your dad and family, and as the post says, “let us know how he’s getting on”.

 

Peter

 

 

 

[smilneParticipant]

Hi Peter & tmcintye – thanks both so much for your responses, this gives me much hope. We are slowly getting our heads around this and remaining ever optimistic for the challenges ahead. Dad has light chain and they said 39 paraprotein, but I’m still not understanding this yet and this part I find all very confusing. He unfortunately already has 2 fractured vertebrae in his lower back, which showed up in the CT scan and MRI. He has been quite comfortable this week with little pain as they now seem to have the pain meds right (15mg of oxycodeine twice a day) and Amitriptyline at night.  Onwards and upwards and hopefully Dad will tolerate the VTD as best as possible and like you Peter and if he is lucky enough to only have diarrhoea, that would be a blessing.  Will keep you posted.

Thanks so much again.
Serena

[Author]

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