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?? Keeping all those germs away I hope?
I am having the same problems getting in on here,I use an I Pad,but I think I have cracked it now,when I sign in and loose the page,I just treat it,as the page is still there and eventually it comes up.
I started posting mainly to see if anyone was in the same position as Slim,Peggy kindly replied,I am not up to date with new treatment and trials coming up,plus I suppose I am to emotional at this present time,so not a good move.
I do hope Velcade works for you,and keeps the sword way up in the air. Love Eve
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 first step of a journey,treat it as a major operation will take time to feel well again,but won,t it be nice to be Chemo free. Best wishes Eve
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 as you can,it will hold you in good stead.
As for age,well older people seem to respond better than younger people to Myeloma!!!
As for an under 50 would love to be in it,so I could swear and shout and not be told off!!!lol,but I do not think that is what it is about,it’s for younger people with different issues,how to help children,job issues,plus what effect the Myeloma is having on family life,it’s not a bad thing.
You need to stop and think what you are saying,so if you are genuine ,come out of the closet.Eve
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 is.!!!
I accept what you say in terms of other countries,they seem to have access to new drugs quicker than we do,trials on Pomilidomyde stared in Spain and France some time ago,and are only just starting here.plus of course drugs coming from America.
I think money does come into question,plus NICE seem to not be answerable to anyone,consultants can leave themselves open to being sued if they do not follow NICE guidelines,this was questioned in parliament about 6 months ago.
I can understand how you feel,specially as you are just starting your roller coaster ride,but Myeloma UK are working hard at marketing Myeloma,and the people who have Myeloma want to help as much as possible.
The research and dater from trials,may give people a chance who come after many on here,I was the person who asked has research become more important than the patient,I think it is a fair question???,we need to see individual patients BMB results treated individual against treatment that is most suitable to the person,not treated as NICE see fit.
A good example is patients who become high risk the future is very bleak for them,because as soon as treatment stops the Myeloma comes back,so research should be looking at controlling the Myeloma rather than looking for remission,possibly by the means of maintenance ,at the moment Revilimid is the main maintenance drug,some people last for years,others do not.
Dusk just remember you have the right to be treated any were in this country.
I would have liked to know more about you and what type of Myeloma you have plus were you are being treated,I wish Dai was alive,he could have told you about moving from Wales to Nottingham,If Eva comes on she could tell you she lives in Scotland but is treated in London,people come from France to be treated at the Marsden,so if your treatment is lacking name and shame them,I do not think my own hospital is one of the best,but I do think the treatment we receive is the same as many of the top hospitals,but they do not have possible the best equipment for testing.funding is the problem.Many wards have benefactors so have more money,but this is usually in top hospitals.
So please understand many on here have been having treatment for years,and having good results,some are still having treatment and having poor results,many choose not to have treatment,many can not have any more treatment,plus we loose some of are cyber friends,we all know what the future holds it’s how we get there that’s important.
I refuse to worry about tomorrow and spoil today so what ever time my husband has left we will make the most of that time,and I refuse to give up hope because this is what this site is about.wishing you a good journey Eve
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 outside trials.
CDT CDR CDV,before you can try another treatment without trials you have to do those 3 treatments.
Trials offer treatment to new drugs often being used in America already!!!
You can try for drugs on compassionate ground!!
The Myeloma Experts are based at some of the Top Cancer Hospitals in the UK,but the smaller hospitals like ours have Kings in London .So treatment on trials is the same as Kings.!!!
My husband has been told they cannot treat him any more! But it was his consultant who asked us would we like a second opinion at The Royal Marsden,which we are taking up.
Would we do anything different,I do not know
Would he live any longer
The only lottery is the person who has the Myeloma,no one can tell you why 25 percent die within a year to eighteen months,the rest survival rate is between 5 years gradually a small percentage will last 10 years and beyond.
Dusk some choose not to have treatment,there choice
Trying to survive is natural,and I personally would not have missed out on these last three years.
As for the press,they tend to be the biggest scare mongrels I know .
As you have just been diagnosed a warm welcome to the roller coaster with all it’s highs and lows,we have lost some very good cyber friends on this journey,who deserve some recognition for paving the way,going on trials and helping others who come after them,and putting up with people who are voyagers in this Myeloma Bubble
So yes we are a great bunch of people,friendly give advice and help as much as we can,so again welcome to the forum,learn all you can.Eve
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 treatments,by NICE,he is unable to get on any trials as he cannot meet the criteria plus they have no way of monitoring his condition,the only way is by BMB,the latest 25 to 35 in bone marrow,very patchy!!! The consultant said even on compassionate grounds it would do more harm than good.
I would have liked him to have a very low dose of Velcade supported by steroids to keep some form of control of the Myeloma,and if there was platelets infusions at the same time like you had this would help!!!!
Slims had very little remission and Velcade did work to get him a SCT,because Thalidomide and Revilimid are cousins,and Thalidomide did more harm than good I was against trying Revilimide,but NICE have guild lines,and understandable his consultants had no lea way.
So the consultants position after consulting the team,is they can no longer give Slim treatment for Myeloma,but will continue to support him with bloods and platelets.
We have not asked how long,as I do not believe anyone can really tell,but the danger is internal bleeding or infection,although his WBC and Nuets are holding there own,but I suppose as the Myeloma increases this will change
I have always thought he was high risk Myeloma plus none Secretor ,but told he is an un usual case,but never explained fully,I am all for individual treatment as you say Myeloma Patients are all different,consultants should have more say on treatment and patients plus carers should be included if they wish.
So we wait to see if the Royal Marsden can help.thanks again for your reply.Eve
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 bloods or BMB figures plus any full Skelton ex rays or MRI scan results,have they repeated the test??? Also you might find you come into the higher risk factor,these things are all important,before you go on to choose your next treatment,also are you on trials??
It has taken me 3 years to find a lot of information ,that we wish we new at the beginning,I do not know if we would or could have done anything different,but we never had that option.
Good Luck Eve
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 things start,like bone damage or AKF that there is a need to start,they have knocked them Myeloma cells back without the Chemo doing a lot of harm to you,it is a wait and see situation,but they will catch it quickly by blood test,some people do not have that option because they become non secretor.
David are Vesbyt man ,would say quality not quantity is very important,and remember there is a lot of drugs still to try,plus the likes of Velcade can be used again in the future.
The consultant wants to do the least harm to your bone marrow,and give you a quality of life,if the Chemo keeps working you will find your PP going down even though he stopped Velcade it’s still in the body.Hope you feel better about the decision.Eve
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 on log in.
Hi Andy see you found the site!!!.
Again lovely to hear from you David,Vesbyt,that’s Slim and me at this moment in time.Eve
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 Myeloma,it’s a hidden Cancer that does a lot of damage to the bones before it is often found!!!!! It’s not to be taken likely if you end up with compression on the spinal cord you could be paralysed !! Lots of people have to have there bones pinned ,so ski at your peril !!!
I hope you smoulder for years and never find yourself with full MM .Eve
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 infections,and food plus advice on what to eat and what not to eat,it comes down to common sense,plus learning as much as you can,then tearing up the text book and just being grateful that the person is enjoying what every they choose to eat!!
Hospital advice differs from one hospital to another,and this subject has been taken very personal,on more than one occasion on this site!!and I am sure no personal affront was intended.
It’s rather sad,when opinions are taken out of context. Eve
Hi Harmony
I do not know much about counselling as I chose not to take that root,I am a firm believer that unless you have had the same experience how an earth can you help some one,there are very good books on dealing with people who suffer a trauma.
As for telling people or not to tell is a hard one,try not to have regrets about it,people will always have opinions on things they have no experience of. If it was me I would remove myself from there presence very sharply.walk away ,unless there thick skinned they should get the idea.( I have been told I do not suffer fools!!!) but that’s the way I would personally cope,you have to do what ever is right for you and no one else.
On the subject of smouldering myeloma,Jean has given you a good example hubby got 7 years,some people get far more,some people never get full MM.some people progress very quickly.worrying about tomorrow is spoiling today. No one knows what the future holds!!!!
Do what ever you need to do,to obtain peace of mind.
My husband looks reasonable healthy,so any one who says how are you he says fine,if you go to the American myeloma beacon and look on opinions,there is a man there called Arnie he is a MD with MM and he has written a good article on people’s attitude to his Myeloma. Worth a read.
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 should be looking at and learning more about your Myeloma,many consultants do not tell you unless you ask,and even then tell you sparingly,they know more about Myeloma and which type have a better life expectancy than others,what they do not know is how much effect the new drugs will have on future life expectancy,so it is trial and error,and padimac was not right for you.
Consultants are also limited to what drugs they can give you the treatments if you are not on trials are as followed CDT CDV and CDR,they have to treat you with these before any new drugs,the trials offer you a chance of the new treatment coming on line as long as you fit the criteria,many people do not get this chance,as they cannot meet the criteria,so in that respect Deb you are in with a good chance,plus you have not had a SCT yet,so you have everything going for you,if this was Slim he would grab it with both hands!!!
I hope this helps,the first time you come out of remission is the worst!!!you have every right to feel this cancer robs you of your future!!but you will appreciate what ever lies ahead much more than you have ever done before,you just have to make the most of all the lovely things around you.
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 one,asking questions and finding answers,be very active.your husband will have his own fears,and if you can answer any questions he has it will help him.
Try not to constantly do things for him,that he can do for himself,it is hard when you watch them struggling!pamper him at your peril,plus he will have mood swings,he is your husband first,and you are the carer second,try to keep the myeloma out of the living room and have some normality in your life.
We all ways try to go out every day,on bad days just a car ride to watch the sea,on a good day a short walk,then pushing wheelchair,blows the cob webs away,and I like to think I am loosing weight pushing a wheelchair .lol.welcome to the roller coaster
