Hi J

Welcome to the site,if I was you I would put your post in general,as people do not look at carers very often,I post here as I am a carer and at the moment my news is not good and I am aware,some people do not want to hear bad news!!

Now to you J,it’s going to be a hard roller coaster ride no matter what your Dad decides,you will not get…[Read more]

Hi Ozzy

Just a quick one about Claxane ,There is a pill I cannot remember the name,Slim used to be on it,and I think Andy is on it,does the same Job,so might be worth asking consultant about it,Eve

Hi Stephen

Well I can only tell you about Slim,after SCT and 100 days BMB,he was told he was in full remission and had 0.00 Myeloma cells in his body !!! It came back before 6 months was out!!!

As you know different people different results!!!

So make the most of your life,lock the Myeloma away,get on with living,Eve

Forgot David ,only had…[Read more]

Hi Carol

Sorry I thought I had replied to you,I have been following your SCT,and must admit you have done really well,must be the desire to get back to Australia !!!!
We have taken up the option of a second opinion and would recommend it to any one,even the experts have different opinions and views,I think it’s because Zmyeloma treatments are…[Read more]

Hi Jan

How are things with you??? How is the treatment going,you are another one like Princess Fiona who has gone off the radar a bit!!!!,or is it me not looking into the site as much!!!!

Thank you for the connection recordmenow,I have looked at it,but do not know if it will happen,Slims not one for expressing his feelings about anything,so I…[Read more]

Hi David

I’m so delighted to hear your news. I know how excited I was when I got that news. Long may it last for you it couldn’t have happened to a nicer person
I would have said so earlier had I been able to log on to see it. For reference, I managed by resetting my password.

Lots of love.

Mavis

Hi Everyone

As some one who is a carer to my husband,and over a period of 3 years,and going to are local hospital 15 miles plus Kings in London 86 miles,now Royal Marsden in Sutton just on 100 miles,double with return journey I know a fair bit about it.

As Ellen says unless you are on Trials treatment by NICE is adhered too.
If your local…[Read more]

Hi Fiona

Well it is really nice to catch up with you princess lol !!!

It is a hard decision when it comes to an Allo ,if you are on Facebook and go into a private group called UK MYELOMA SUPPORT GROUP, Jet has put up some stuff on Allo plus there is a separate group,!!! So lots of information, Jet had hers over a year ago she only got 5 months…[Read more]

Hi Liz and Kevin

Thank you for your kind words,one of the reasons I posted this was for people to have an incite,because by the time you get to are position,all the upset and fear has gone.i suppose it’s knowing the situation before it’s confirmed,you do not ask,but wait to be told.
The bad thing about that is,since coming off Revilimide the…[Read more]

Hi David

So glad for you,are the putting you on maintenance ?????

The bloods are good too,just watch out for those horrible DVT,read that e mail,wait till the wife goes out, lol

Seriously glad things are near normal long May it stay that way. Love Eve

Hi Fiona
How are things going!!! Is hubby responding to new treatment,or are you still at watch and wait,because you have not been posting I have lost track a bit,he came out of remission!!!???
Please correct me if I am wrong,the last 6 months have flown by,just when you do not want them too.

You must stop typing and delating response !!! We…[Read more]

Hi Trigger

The best thing you can do is ring Ellen on the free number above 9 to 5 weekday she can answer your questions,the reason I say this is some of your mums information plus yours seems in correct,but I could be wrong.????

My husband has had the following treatment CDT CDV and CDR these are the three chemo,s that NICE allow if not on…[Read more]

Hi Trigger

It is very much an individual choice,and it is your mums choice,I would advice that you get a second opinion ,65 is not old.
You do not say what Myeloma your mum has,or what damage she has,or if it’s effected her kidneys these are very important in any decision she makes.

My husbands consultant advised us to go to Kings and speak to…[Read more]

Hi Stuart

Found this because of our conversation this morning!

I can now get on the Forum, but can’t see how to start a new topic which used to be at the top of each Category.

Thanks for all you are doing to help us.

Mavis

Hi Tom

At last I have been able to get on line to the Discussion Group so am catching up. Good luck with the treatment. Hope you get into remission real quick. My question is, if you do, why do you need another SCT now, why can’t you just go with the remission for however long?

Lots of love.

Mavis x

Hi David

Revilimid is known to cause DVT ,it will be your consultants approach to it,if you stay on it or not.When Slim was on the Revilimid he was on a preventive does of Claxane 40m but this still did not prevent an artery blockage from hip to knee although he had low platelets?????,

There is a tablet called RIVAROXABAN that does the same job…[Read more]

Hi Grega

I know GCFS injections boost white cells in the blood,if you contact Ellen or Maggi on the free number above they can explain. Eve

Hi Andy

Well done Steph ,I do not know if you keep a BP gauge at home ,but I find this invaluable ,Slim never hits a high temperature ,but his blood pressure goes down,and he is not confused,but there is something not right about him,I have learned this is a prelude to bloods not being right plus,his temperature spikes very quickly,I am talking…[Read more]

Hi Peter

I try to look for positive than negative ,We have all been were Dusk is angry and confused,I think your story Peter is a an excellent example,over 10 years,not great remissions and bone damage and you are still here.

Information and hope is what this forum is about,but there also has to be space for people who need to air there…[Read more]