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…[Read more]

Hi Rosie
So sorry to hear your sad news,it heart breaking if you are not expecting it to be so sudden,I had Time with Slim to prepare are selves for what was going to happen,you can never tell with Myeloma all it takes is an infection or pneumonia ,I nearly lost Slim at the very beginning with pneumonia,so we felt lucky to get another 3 years…[Read more]

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

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

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…[Read more]

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…[Read more]

Hi Fuzz

Well you are showing some signs,that could be a number of diseases,a simple blood and urine test should show the possibility of Myeloma.

Doctors only come across Myeloma once in a life time as there are only 3000 cases a year in GB.

I would make a note of your weight and height,plus how many times you feel sick,your kidney functions…[Read more]

Hi Vicki

Nice to hear from you, I think you are doing the best thing not coming on here to much when you are in remission ,best to lock the Myeloma away in a cupboard mentally ,and enjoy life as much as you can,because we all know it finds you in the end,so enjoy today.

I have good and bad days,try to keep myself busy and out of the house,after…[Read more]

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…[Read more]

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…[Read more]

Hi Maureen.

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

Best wishes to you both.

Mavis

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…[Read more]

Hi Maijic 30

Reading your husbands history,he has had thalidomide ,then Velcade then pomilidomyde has had his STem cells harvested,then Polidimide and because he has an agressive Cancer they are recommending he has DT pace,and in between this he has had pneumonia!!!!! Plus he has had compression on his spine,hence radiotherapy.

He has age on…[Read more]

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,…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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

Hi Christine

Didn’t know Zometa could be given in tablet form. I shall follow that possibility up. I currently am in my third year of four weekly infusions of Zometa. It is the only treatment I am on at present and I gladly go as it has kept me free of broken bones which was a real risk.

I had previously taken tablets – Bonefos for over a…[Read more]