Hi Sue and Helen
Thank you for information Sue,my daughter tells me the lesions on the shoulder blades will be very hard to define new lesions as it does not show up very well, he is having difficult taking clothiers off because of pain,the lesions on the skull are easier to spot,he has told us no more lesions on skull,this is when I approached the possibility of PET scan,In his words he said we should not think ever pain is connected. With Myelma,I pointed out the oxycodone he is on he should not have any pain!!!!
He repeated the same thing PET scan will not tell what is going on in bones.he mentioned frozen shoulder I told him he did not have one,even if I took Slim to are doctor who is good,she picked up the bloods were showing kidneys affected.we see her this week.
I was hoping as the BMB shows 10 percent,if treatment started early like Jo there would be less damage to kidneys and bones.
Some good news for you both have you seen the home page,it has been approved the use of Velcade to be used again!!!!!
Hi Dai
Just a quick one have you seen the home page on drugs available !!!!!!!!
Hi Tom
Coach trip seems a good idea,as you say no driving,I drive now for long journeys.
We like the freedom a Motorhome gives you,but must admit will want to know we're the hospital is. I am determined this Myeloma is not going to take everything away from us. We will still take trips to France but only within a 24hr distance..
This is why we sold are big van a smaller one is easier to manage.
It seems all European Countries are different UK is the only country that do not make other countries pay in emergency , I dread to think what 21 percent in ITU would cost in France. Last time we went are own doctor would not sign the insurance paper to say he was fit to travel we had to go via consultant and that was when BMB said 0.00 percent. So do not think we will bother next time just go on Euro Card and be with in 24hr distant.
What a way to live.!!
Hope your coach trip is some were special. Love Eve
Hi Andy and you to Vicky
Vicky we are all a bit paranoid ,that's why everyone says its like a roller coarser lots of highs and lows,you are both expecting to much,if you look at SCT as major surgery,then you would not expect to be fit. Andy Tom everyone else will say listen to your body.
Andy I am so pleased for you,it is an awful feeling when you do not see any improvement ,and you are taking pills or having chemo,it is so nice to see an improvement . I know you said you need a donna but what is going to happen now,I suppose its a wait and see game with more of the same medication .??
Do you think it might have anything to do with your visits to the pub!! May be PP do not like yeast,it works for Tom….lol
It's so nice to hear good news. Love Eve
Hi ladies
With Slim being deemed to be out of remission and will have to have BMB every time they need to know how is myeloma is doing,plus more blood .it has made us rethink are plans.
We thought France safe to go only to find your European Health card will only cover 79. Percent of emergence treatment, so getting caught out could be costly. So I think it has to be UK for us always wanted to do Scotland was saving it for are old age. Love Eve
Hi Jane
There is no point SE is all the same medical team,I know this team well after 2. 1/2. Years I might have my moments with the consultant,but most are the same,when they get that high up, I did think may be general treatment at another hospital might be quicker but I think overall the unit has improved I will let you know if I am wrong.
I suppose consultant. Is like any body having a bad day,but could not fault him this time.
Just had a look at what trials are available ,for most you have had to have Revidimide and Velcade,so no good for Slim,if and when he start meds will I think be Revidimide . If Kings run a trial our hospital work with them " .
As I said Slim looks great it will depend on his next BMB it,s just the waiting,I just wish it would show up as normal,would be easier to spot .Eve
Hi Tom
Your local club must have had there takings hit. Lol you know I sympathise with you,not having to go to work,you poor thing!!!its a hard life. I hope it clears up and you are soon back on your feet,missed you on Facebook. Love Eve
Slim sends you his best wishers.
Hi jean
Ask for the reports on Skelton ex ray and MRI scan you are entitled to both ,if you find them difficult to understand ask them to explain them if you have no response take them to your doctor or find some one who can break down the medical jargon,
Has he had any ex rays done from time he started myeloma to now ???
They do not start treatment if pp are stable only when bone damage or pp start rising.
Again I can only say Velcade worked for Slim until he stopped taking it. Eve
Hi Jean
I did try again to day,but I was met with same explanation which is PET SCAN WILL NOT TELL YOU WHAT IS GOING ON IN THE BONES. I said I know that but it will show if it in the soft tissue,fell on deaf ears.we know its 10 percent in bones,no extra damage shows on MRI or exrays.. He has another BMB on the 7 of May blood taken for kappa light chains again as showing protein increase.
I just think they should think out of the box as they agree Slim is very unusual. They have a machine at the hospital,I have also pointed out, this site video say scan can be used,!!,! I do know if they find it in tissue,I will not be a happy bunny.Eve
Hi jean
Looks if your post,slipped down,and you had no reply.
I am sorry Mike has to start treatment after 5years. I take it he has come out of remission !?!!
Velcade did work for Slim,and managed to get to SCT,but he only got 6months before it came back. Asa drug Slim did not have many side effects,in some places they do it subcutaneous which means less time in hospital..As you know everyone is different.
Hope everything goes well for you Love Eve
Hi Dai
Just a quick note,I think Janet would benefit from this site,cannot get Slim on it,says its my thing, but as time goes on he wants to know more and has started to watch the info videos on here.
I have been trying to get the Myeloma team to consider a PET scan for Slim,but falls on deaf ears,say they do not do PET scans for Myeloma,nut according to video,s they do???.it would give us both peace of mind plus they have one at his hospital and we would know if it is in soft tissue as slim has been complaining of pain in his chest area for a long time.Eve
Hi Tanya
I remember your posting,All parts of the past,and future,with lots of painful memory's and your dad more or less choosing to ignor his ill ness for the sake of alcohol .
This will be a sad time for you as so many issues not resolved,but you can only do so much,you cannot change your dads future,be kind to yourself,for give him,and he will at least die in peace.he will be worried he has not made his peace with you,take his advice talk to your mum, Just remember it was there marriage ,there chooses .
I do hope it will be over for you soon,Eve
Hi Jo
Nice to know you still with us,you have been in my thoughts,Keith Marie and you all went quiet,we know Keith's in hospital and at last you have posted.
You are going to have to teach your husband to post,tell him we were getting worried!!
It,s a long haul getting yourself. Fit after Pnuemonia , it is just a blip,make sure you get plenty of rest,took Slim awhile to get back on his feet,but did start treatment the week after he came out,I thought it was to soon,but he did it.
Glad you are still about the sword Damocles did not get you. Lol Love Eve
Hi Rob
My husband is 69 years young this year has had Myeloma for 2 1/2 years CDT did nothing Velcade got him in a position for SCT he has had only 6. Months remission,but he is ready for the next treatment which we think will be Revidimide .he is in a good frame of mind which helps.
My husband has looked very ill at times weighing 60 k skin and bones also visit to ITU ,so try not to judge on mums tiredness plus you mum might react better to original treatment this time round as her system has got use to it.
It is very hard to watch someone you love having treatment and often complications,I have a tea shirt to prove it.
I think you need to know how aggressive is your mums Myeloma,has she had all the treatments available?????
Plus sometimes there are added complications,eg excessive damage to bones or kidneys,you do not say what her PP are and anaemia is commen with this disease ,that would explain why she is so tired.
I can honestly say last year my husband looked awful,he looks great now but he still has myeloma and we are back on the round about,so try to be positive .Eve
Hi Rob
I was going to say a warm welcome to the site,but running out of options,is not welcome
You do need some of the more experienced people to tell you if there are any more option s or Ring the myeloma nurse she might be able to help.
You do not say what age your mum is and I do think it might have some bearing on her position and how she feels, in some cases on here the family have been told the situation and have not wanted the patient to be told,I suppose it depends on how good her consultant is,if you ask him direct,he must tell you the truth.do you want to know??? .i do know of someone who tried to keep it from her mother only for her mother asked to go to a hospic were they do a marvels job of careing in the last stages of life with respite instead of still being treated in hospital. May be its time for you to speak to a Mac Millan nurse.
Lots of things to think about I hope someone on here can give you advice about more treatment.Eve
