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 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]

Hi Jo

Lovely to hear from you,I have been thinking about you and wondering what was going on specially with the Damocles falling a little bit.

Thank you for information on Velcade I did not know about the second batch of Velcade only that it can be used again on patients who have responded well first time round,all good news.

How are you Jo??…[Read more]

Just wanted to say good luck to everyone,although it’s a big thing for the individual having this procedure ,ita an every day thing to the staff,expect to be emotional and do not worry if you have an odd accident,nothing they have not seen or done before.

It’s a bit lonely in isolation,so make sure you have home comforts around you,this is the…[Read more]

Dusk if you are a Myeloma person,please think about putting you name plus picture,and explaining your story,because that,s what this site is about,helping people!!!!

Stop trying to scare people,this Myeloma is scare enough,specially for people who do not prefer to know a lot about it,it’s there choice,educate yourself by all means learn as much…[Read more]

Hi. Dusk

Well I would not call my husbands journey great,far from it,I also do not think being late diagnosed determines how long you will live,it just means that you have far more damage to your bone structure,it’s getting the Myeloma under control that is the hard one and that depends on what type of Myeloma you have and how aggressive it…[Read more]

Can I join in this post,as a few on here realise what my husbands position is at present .

I think more could be done by GP to get a quicker result,and yes I know it is rare plus back ache could be a number of things!!!!,but a simple blood or urine test should be done as routine!!

The facts concerning treatment,NICE has 3 treatments on Board…[Read more]

Hi Peggy

Thank you very much for replying and specially for the information,Slim is a little bit different from you but I am assuming you had platelets every time you had Velcade?????

We are going to the Royal Marsden in Sutton this coming Tuesday,Slims consultant has arranged a second opinion,
The problem Slim has is that after 3 recommended…[Read more]

Hi Mandy

You must be feeling awful at the moment,but it sounds if you were just waiting for your worst fears to be confirmed.

I think you are doing the right thing getting a second opinion,check if your consultant is a myeloma expert rather than just a haematology expert,in theory you are going to be an unusual case,you do not mention your…[Read more]

Hi San

So sorry about your mum,I do not know which is easier knowing it’s going to happen or not.

I hope you and your family find some peace at this sad time,no more pain for your mum,I also hope you were able to spend some time with your mum doing normal things with out the myeloma being up most in your thoughts. Eve

Hi Jeff

Well age and not having SCT explains it.

I also think,we do not take every thing in when it’s not good news,I am sure the consultant will explain if you ask,or see the myeloma nurse who is in charge of the trials,they are usually better at explaining it,in none medical terms.

People can be smouldering under 10 and it’s only when other…[Read more]

Hi David and Andy

Good to see you are still around and doing as well as can be! Are the Myeloma masses outside the bones David,you do not say???,
Glad the PP are right down,how are your bloods with the Revilimid ????.

Have to admit David I am not keen on the new format,my I Pad,makes it difficult to log in,and cannot get the site to remember me…[Read more]

Hi Chris

You are lucky in many ways,because of routine blood test they have caught you early plus SMM,so that’s all good news.

There is no reason why you cannot live a reasonable normal life,I would advice you to ask to join the under 50 as you will find people of your own age!!

What I will recommend is you educate yourself concerning…[Read more]

Hi Andy

Well do you feel,you have had your hand slapped!! Lol

Andy after all these years on this site and your countless experiences of so many,many different chemo,and people with different opinions and approaches!!!

Hope you intend to go out for Sunday lunch and enjoy a pint of real ale,treat it the same way as the BT .lol.

As for…[Read more]