Hi Trish,

I had my SCT last summer, and my paraprotein came down to 2. My bone marrow (another indicator of remission) was undetectable – well the abnormalities were!!

They class me as having had a Very Good Partial Response. Because my pp isn't zero, they can't class it as total remission. But in reality, I am in a sort of remission as I am…[Read more]

Hi Ron and Christine

Sorry to read Christine is not too well 🙁

As For me I had CDT for 5 cycles (28 day cycles) then onto stem cell transplant, I also had Zometa for about 2 years post SCT

What treatment is booked for Christine now?? the CDT has finished? as for the Kidneys am not sure if the can heal themselves??

Love

Tom…[Read more]

Hi Gillian

As for me after SCT I had the same as Eva and to be fair I dont like to go too far from the loo after eating 🙁 no pain though am pleased to say.

Good luck

Love Tom "Onwards and Upwards" xxx

My picture is huge and I use Safari

Jean

Welcome CharlieLouise

So sorry your Nan has been diagnosed with MM and that you are having to come to terms with it all. With a young family you are going to have a busy time!

All best wishes.

Mavis

Hi Ann

So sorry that your husband has had to join us, but I know you will find lots of support on this site.

As you will be gathering MM is a very varied disease. It could well be that your husband may find he doesn't need to move to treatment yet, or perhaps just bone strengthening infusions. Sometimes it is just "wait and see" at the…[Read more]

Your More than welcome Ann, and I think we all know how you and Pete feel at this moment, and I had gone onto some other sites before finding the good ones 🙂 so it was scary but a relief when I found these good folk 🙂 dont forget ask away 🙂

Love
Tom "Onwards and upwards" xx

Hi Ann

Welcome to the site. This is the place to rant, ask advice or just to talk. I know what you mean about hubby not going on site. My husband Frank was diagnosed in 2006 – not on treatment yet, but going for CAT scan and retake of bloods tomorrow. I cannot get him to go on forum. I give him info that I have gotten from friends on here but…[Read more]

Hi Ann

A warm welcome to the forum.

Use these threads as your sounding board and ask manything you feel you need to know nothing is too sill a question so if you feel it ask it.
David is correct MM is an Individual Illness.

What Hospital will Hubby be having his treatment as I find it good if you know someone else is or had treatment in…[Read more]

Hi Trisha

try MIA insurance I have used them a couple of times my insurance is a bit higher than Helen as I also have Chronic renal failure due to MM Mia seem to insure you if you have the Doc's permission to travel their number is
01268 783383 you could get a couple of quotes
Regards Jo x

Hi Trish and peter

Your welcome, I also had Zometa every four weeks for two years post SCT. struggle to find a vien near the end though Lol.

All the best

Tom "Onwards and Upwards" xx

Hi Trish

Well I had same in 2009 and I am in remission (well thats what am told) and have been since before my SCT it was the CDT that put me into remission.

Good Luck on Hubby's treatment and recovery.

Tom "Onwards and Upwards" xx

Hi Stan

Sorry to hear about your Partner is going through a rough patch.

I think its all been said above just want to say welcome and Good Luck to you Both and soon get a reason for the pain.

Tom "Onwards and Upwards"

Hi Phill

My husband (also SMM) went for a session of physiotherapy at Belfast city Hospital (recommended by consultant). He was in agony – he said that he felt that he had been electrocuted. The only relief that he got was with a Chinese doctor who researched Myeloma and then carried out treatment which included accupuncture. He swore by it.…[Read more]

Hello Stan

Welcome,I can well understand your concerns,have you mentioned to the doctor the MM history?

Some Myeloma,s do not give any indication in the blood,there are number of different Myeloma,s and the correct blood test plus urine test have to be done. This will indicate if myeloma is possible,the only positive test is a bmb,if they…[Read more]

Hi Tracey

Just quick reply as doing this on I pad in hospital

Slim takes Amitriptyine 10m to help him sleep they have just upped his dose to 25m because they also use this for PN as this is used for PN might be worth asking you doctor. Eve

Hello Stan
I am sorry your partner is so unwell there is a simple blood test for MM so your partner should ask for one Pep test is a good indicater of MM it measures the paraprotien in the blood which is one of the major indicators for the disease
Regards Jo

Hi Duncan, Yes you are in the right place, if you ring Ellen she will be able to tell you about it plus send you booklets. There are a few people on here with Amyloids so I am sure they will reply when they see your post. I believe there are only about 600 cases a year and Royal Free is the…[Read more]

and I am on Tom Lappin and photo of my young bride and I 🙂 xxxx

Hi charlielouise?s

A warm Welcome to the site. and am sorry you had to join, but we have some great folk on here to help and give advice.so any thing you need to know just ask and more so if you feel you need to vent your stress or anger at times here is the best place 😀

Good Luck on the MM road.

Love to you Both

Tom "Onwards and…[Read more]