Hi

Myeloma has a major effect on carers,it is wise to know what to expect as the years pass and learn to come to terms with it,as the years go by you do learn to accept and come to terms with your husbands illness,so try not to look to far ahead as nature will take it’s course and as time goes by acceptance and a form of peace follows.
On a more…[Read more]

Hi Keith,

So pleased to hear your great news. Long may your remission last.

Best wishes.

Mavis

Hi Rachel

So sorry to hear how poorly your a Dad is and that you have had such problems getting information from your Consultant. It seems that now the priority is to make sure your adad is as pain free as possible. Is there a pain specialist nurse you could talk to. Also, is the. Myeloma Nurse Specialist who could give you support.

Lots of…[Read more]

Hi Nick

Glad to hear you have got you pp level down. The side effects will wear off in time.

Very best wishes.

Mavis

Hi Mike

We come from the south east coast,called Deal,you can see France on a clear day.
Slim used to have treatment in Canterbury,but was refused any more treatment at Christmas,Faith Davies agreed to treat him,we usually hit the rush hour going as clinics are in the morning,always the odd accident,it’s M20M26M25.then 8 miles to Sutton ,it…[Read more]

Hi Jane

Welcome back,you have been through the wars,battling away,so glad you made it,to tell us about it.

Let’s hope this is now your time!!! Go out there and enjoy every minute,the experience does give you a different out look on life.

Ours is being here each year to smell the blue bells,heaven on earth that smell.Eve

Hi Sandra

Just to say welcome

As you know your condition is rarer than Myeloma! I believe 600 cases a year,I would go back in to Related Conditions,you should find a few in there with Amyloids in the heart,they one I am thinking of is an Ozzy who lives with this condition who also travels,so might be worth a search.

Good luck on your journey,my…[Read more]

Hi Mike and welcome

I think may be what you do not realise is your good news of lasting seven years,if you look at statistics when you are a new MM it’s depressing,and some one like you comes along and says 7 years,you give the newbies so much hope. The waiting room is so small at the Marsden,bit like sardines in a tin,you cannot help but talk…[Read more]

Hi Denise and Carol

It’s a sad fact this disease has a massive impact on all family members,most people know there is something wrong but when it’s diagnosed it comes as an awful shock,I think it’s because there are so many different symptoms,either bad backs,or broken bones,there are only 3000 cases a year in this country,then you get the…[Read more]

Hi James

They like you to be 12 months clear and to have had a good response .nice guide lines is it’s allowed if you have had a good response .

Revilimid they usually use until it stops working.
Pomilidomide is the latest one coming out in trials.

When he says chemo!!! Is he talking just cyclophosphamide ????

You can go into trials on the…[Read more]

Hi David

Long may the Guinness taste good!!

Keep strong.

Mavis

Don’t know about bites, Carol, but enjoy Croatia!

Although I didn’t have SCT I still am more open to infections. I have had cellulitis of the legs several times.

All good wishes for lots of good days.

Mavis

Hi Sarah

I had six lots of CDT starting in March 2012. Following this I have continued in complete remission. If I remember correctly my PP levels went steadily down from about treatment number three.

Main side effects for me were thinning hair, metal taste that made food less appetising (I developed a craving for Salt and Vinegar Monster…[Read more]

Hi Maj

Just caught up with this post. I do hope your husband’s SCT went according to plan and that his after effects haven’t been too dramatic.

Best wishes to you both.

Mavis

Hi Gill

Thanks for this. It is good to have confirmation of something I vaguely remembered, that you could revisit CDT. Certainly if/when I relapse, I will ask about it. Not without its problems, horrible taste, thinning hair and shingles, but six lots brought me into complete remission the first time.

I do hope your Mum does well on it. I…[Read more]

Hi Victoria

Just caught up with this post. Has your better half checked this out yet?
As Helen says, better safe than sorry!

Hope all goes well.

Mavis

Hi Graeme

This is interesting because infections are the real bug bear of MM. I always feel so grateful to all of you who take part in a trials. It hasn’t been relevant to me, but I feel I’m conducting my own – MM without SCT!

Best wishes.

Mavis

Hi Graeme

So glad you have had no complications with the chickenpox. Don’t think I have caught on what TEAMM Trial is, but hope you are on the “real thing” and that it works well for you.

Keep smiling!

Mavis

Hi Vicki

Yes, you are right I didn’t have an SCT. I had CDT and six lots got me in complete remission and so far I have done 21 months and counting. I’m still having hing four weekly Zometa infusions. I’m now nearly 4years post diagnosis so feel grateful. Not an easy ride, bit I’m still hear to tell the tale!

So, there is lots of hope for…[Read more]

Hi Graeme

Glad you got to the bottom of the itch. Wonder if it will make you vulnerable to Shingles while on treatment? Watch if you have any aching or rash round your middle once chicken pox has gone. I had thought chicken pox gave you immunity to shingles, but apparently not!

Take care!

Mavis