Hi Deb

Have they released any information concerning the padimac trials,because the few people who I know who were on it,it did not work for them!!!!

There is no harm in trying for the new trials if you do not get carfilzomib ,you can pull out of trials,you can also find the price of drugs by going into NHS pricing for drugs.!!

I do think you…[Read more]

Hi Sal

Welcome,I think at the beginning it is a big learning curve,your husband will just want to get on with the treatment and I think you would be a help to him if you learn,t all you could about Myeloma plus side effects of the drugs,although it’s your husband who has Myeloma it will effect the whole family,and you will have to be the strong…[Read more]

Hi Tom

Just caught up wit this. So sorry you got this news, and just before Christmas. Still like everyone else, I know you’ll kick it into touch again. And what advances those four years have bought. Think of the Velcade Three bravely battling to get it available for all, then the injection rather than infusion, and the other drugs. It…[Read more]

Hi Nick

Sorry, I haven’t been on for a few days.

I decided not to press for SCT partly because of other health issues, but mainly because as there is no guarentee as to how long a remission it would buy, I didn’t want to spend precious months feeling so rotten for an unspecified gain. Also there are a new arsenal of drugs coming on stream so I…[Read more]

Hi Harmony

Happy Christmas. Do hope it is a very special year. One thing about a diagnosis of MM is it does make you value each day. Perhaps in this way, it is one of its gifts!

As Andy says ” each day is a gift, use it well.”

Blessings to you and your family.

Mavis xx

Hi Tracy,

Welcome. Your response to the diagnosis and the treatment is quite normal. MM is hard to come to terms with and an ongoing battle. I do hope that the chemotherapy does its magic for you and that you progress steadily to a very successful SCT. Do be kind to yourself and find ways to make “being at home” more pleasant. I imagine you…[Read more]

Hi Nick

Just wanted to pop in and welcome you to the a Forum – sorry you have had to join us! Sorry you progressed to MM so quickly. How did you get diagnosed?

I just hope you do as well on CDT as I did. After six regimes I have now been in remission since summer 2012. Of my own choice I have not gone down the route of SCT. I am 68 years.…[Read more]

Hi Gill

I’m so glad you have called in to see us. I do hope your plan for how to cope with Christmas works for you. You are the important one in all this. I am glad though, that there will be family around over the Christmas season. They will all be feeling a gap at the table too, as it were.

Do hope you and your best friend can spent some…[Read more]

Hi Everyone

Nice to see everyone getting in the Christmas spirit,we have already started eating the Christmas goodies,so might have to buy some more

I am still looking for some of the Christmas decorations???,I think Slim has hidden them away!!

He has a weekly visit for bloods,plus if he needs platelets or bloods another visit,a visit for BMB…[Read more]

Hi Tom

I can tell you lots of hospitals do not do Pet scans ,Babs told me the reason why is the amount of rays it has to use,this explains why Slims consultant is against Pet scans,he says it will not tell you what is going on in the Bone Marrow,but when you have no firm readings for PP or light chains,it’s a long time to wait between BMB,Slims…[Read more]

TEST

Hi Dick

It's not just sad,it's wrong!!

The fact is the treatments involved are excellent plus the best for most Myeloma patients. New patients in the right post code have the avaliblity of trials,but the patients that are not responding have little choice the consultant has no choice.

My husband had on trials MX1 was randomised for…[Read more]

Hi Helen

Good to here you are being pro active as young Tom would say, I would gladly have a bet with you,they will still make you wait,they know best attitude !!!!!

The Velcade takes so long because it ends up going to five different departments and if there not on the ball,or forget to send it to next department,!!! And as you say they…[Read more]

Hi Margret

Welcome,
Bonefos question I cannot help,but I was surprised you have been a drug so long,you do not give a great deal of detail,have you been Diagnosed with Myeloma or are you looking for an illness for symptoms????

With the drug you are taking plus quantity and length of time,it must have some effect,why have you been on them…[Read more]

Hi Maureen

Good to hear from you,it will do you both good to get away from hospital,I use to sneak Slim out a lot,as he hated the hospital and they had no day room,We use to spend a lot of time in the chapel .

I married Slim after 30 odd years together,are anniversary is 24 May married in ITU,we tried for 14 February but Slim was in…[Read more]

Hi Tom

I am very thick skinned,and I do not just mean I am fat.but I have a very soft centre. Luckly Slim loves me,he would be the first to tell you he loves never having to worry about anything. (Control freak ) never,just cannot abide a job not done properly.

Helen if you are taking up knitting can I put an order in for a cabled…[Read more]

Hi Helen

To be fair about the unit,they have improved,opened another section,have taken on more staff,volunteers who help in hospitals fetch and carry drugs,before poor nurses were doing it,and would not let carers do it. So they did listen after written complaint, I do think they might be dreading us returning. LOL.

May I suggest you take a…[Read more]