[mhnevillParticipant]

Hi Helen

Apart from serious mobility problems I am doing well. Still in remission though keeping my fingers crossed for my Consultant appointment in December when PP results will be available.

I’m with Andy about “quality of life” issues. I remember dear Dia saying once, that he regretted his SCT as it had only bought him ten months remission yet involved all the very distressing side effects. (Ido hope I’m not misrepresenting him. God rest him. Still greatly missed.)

Do hope you find the resources to cope with all the inter family issues that the wedding is bringing up. It is not supposed to be like this, is it. I do hope the wedding is a very happy day leaving lots of great memories.

I have really taken Andy’s slogan to heart “every day is a gift, use it well.” I have had it inscribed on my new iPad!

Andy, keep on enjoying life day by day.

Love to all.

Mavis x

[mhnevillParticipant]

Dear Rosie

So sorry to hear of Chris’s death. So tragic it came so quickly and leaving your son so young.

I will pray that you are given the strength to cope at this aweful time.

Much love.

Mavis x

[mhnevillParticipant]

Hi Helen

I’m glad you have popped in again, but so sorry to hear about your Dad. However it is great news that you have actually retired! I do hope and pray it is a long retirement in spite of MM. So glad you have your daughter’s wedding to look forward to.

Go well with the treatment.

Lot of love.

Mavis xxxx

[mhnevillParticipant]

Hi K

Your Paraprotein isn’t too high so you may not start on treatment yet.

You should ask if your blood counts are normal as these affect your ability to ward off infection. Also if there are any problems with your kidneys.

MUK has a free treatment diary that gives good information about blood results. You can get one by ringing the Help Line.

Have you had a skeletal survey (series of X-rays) to check for bone damage?

All very best wishes.
Mavis

[mhnevillParticipant]

Hi John

I think it must be Zometa infusions not Blood that you are having. I have been having infusions for over three years. At the point I started having them I was told my bones were in danger of breaking at anytime. However I gradually got more confidence and although I am still careful I can now lift heavier loads. I’m glad to say that I have never had a break.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Nick

Sorry to hear you have had to join this site. Welcome from me. I have found it invaluable over the past four years.

It is interesting how different all our MM journeys are. I was diagnosed, following completely debilitating back pain, with a plasmacytoma encircling one of my vertebra. I had to have it surgically removed and rods put in to support my spine. This was followed up by radiotherapy.

I eventually started CDT eighteen months later. I put it off as long as I could, but does mean I have lots of bone lesions. Since then I have been in remission for over two years, it still have very limited mobility.

I’m lot older than you, nearly 70, so decided not to push for SCT as I have other health problems.

Good luck with the Trial.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Maj

Thinking of you today. Do hope you have a helpful hospital visit. I believe your husband is young. I guess that’s why they are suggesting SCT. However it is his decision.

Hope your husband was brave and challenged the Consultant, and asked all the questions he wanted to. I always write mine down before I go, else I forget something.

The trouble and the good news about MM is that new treatments and treatment regimes are coming along so fast.

Do let us know how things went.

Rooting for you both.

Mavis

[mhnevillParticipant]

Hi Maureen.

That’s great news. Do hope Ian’s mobility also continues to improve.

Best wishes to you both.

Mavis

[mhnevillParticipant]

Hi Alan

How I sympathise with you. I remember well the horrible taste of food!

I am surprised there is no help seeing you are on a Trial. Have they given you phone Nos. to contact? If they have do use them. I often wonder what it is about Myloma and why we don’t seem to get the MacMillan Nurse care that other cancers do. We have a haematology specialist nurse, but she cover Lukemia as well. In four years I have never had a nurse specialist take the initiative and contact me. Mine knows who I am, as she is in and out of Day Ward, but I have never sat down and had a conversation with her.

This is why I say to new folk on here, learn as much as you can and become your own Specialist.

Hope you find something to tempt your appetite soon. It needs to be something with a strong taste. I was always sorry I don’t like curriesM

As you say, no pai no gain! Look forward to a long remission once the Trial is over.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Chris

I would really recommend a scooter. For me they have made the difference to always having to sit in the car while my husband took the grandchildren, or the dog, places, and being able to join in.

My first scooter is a Pride go go elite plus and it folds down into the car. (Approx £550.) I have also taken it to Luxembourg, by plane, whe I visit my daughter. I now have a second scooter a Quingo Flyte. This goes into the car, up a ramp, by remote control. It was not cheap. (£4000) but it is a more robust scooter and does quite steep terrains.

If I was starting again I’d get one of those racing TGA ones that look like a quad bike, but you need a car that would take it.

I know lots of folk resist using aids of any kind. Me, I think anything that can give me a more fulfilled life is worth it.

All best wishes to you.

Mavis

[mhnevillParticipant]

Hi John

As I would say to Chris, do read everything on the Web site about MM. Knowledge is power if your Consultant starts to talk options with you. Also, it helps to know what questions to ask.

By the way, MUK issues a free Myeloma Diary to plot your MM journey. I found it very useful when I was starting out. You could no doubt ring for one.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Susie

That’s good news about your PP readings. That is a really good fall in the right direction. Let’s hope the reduced dose of the chemo drug will reduce side effects.

I don’t remember anyone on here complaining of long term effects of Zometa infusions. As I have said, I had shivery episode after first infusion, but since then have been fine. Each of my infusions take about 15 minutes plus a couple more to flush the vein.

Hope things continue in the right direction. Hang on in there!

Best wishes.

Mavis

[mhnevillParticipant]

Hi Susie

You ask about Zometa. I suppose the question is, have you already got MM bone involvement? Usually shown by full body X-rays. If you have the sooner you start to take Zometa the better. As I have said in another post, I have been on it for about three years and it has prevented any breaks which my Consultant feared as my skeleton is full of lessions (holes)!

However if you haven’t got bone involvement yet, if I was in your position I might be inclined to ssk them to delay Zometa for a couple of months.

Having said all this I wasn’t aware of any side effects from oral Bisophonates, but obviously they weren’t that effective at preventing more lessions. The advantage of Zometa is that Trials have shown it has a bonus as also having a slight anti-myeloma effect. I only had side effects after the first infusion, flu like shivering.

Glad you are discussing a reduction in your dosage. I think it is important to remember that you are a player in the decision making about your treatment. You don’t have to see it as a conveyer belt. Your strength is in gaining as much knowledge about MM and also the latest thoughts.

Bless you on your journey.

Mavis x

[mhnevillParticipant]

Hi Julie

I also had metallic taste on CDT. That and thinning hair were worst things. I used to crave salt and vinegar monster munchies as they cut through the taste buds!! The two compensations were ….. I. I got into remission and still am after 2 years, and. 2. I lost weight!

Good luck as you travel on this MM journey.

Mavis x

[mhnevillParticipant]

Hi Denise

I echo what Stanley says. Encourage your husband with the end result. I had six regimes of CDT. And have now been in remission over two years so it was certainly worth it.

Best wishes to you both.

Mavis

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