Dear Dai
I am so happy for you and Janet,I can almost see that big grin on your face.
Velcade worked well for Slim while he was on it,just tiring going to hospital, not the Velcade waiting hours ,I know your experience of Velcade is different,if you are not having it subcutaneous ,get a hot water bottle,worked wonders for Slim,before bottle,needed heat pad,15 min,then it was a lot of painful prodding.
It does sound if they are trying to knock Myeloma back and then with once a week maintenance ,until it stops working,that's a lot of time,I would be tempted to ask for a leaflet with all side effects,which are many,so you are better informed,remember Slims side effect!! Poor man was walking bandy until he told me.
Helen I know you must be feeling down about starting Velcade ,specially when you do not feel so ill,Slim was the same one minute everything showing remission expecting to be told CDT had worked only to be told Velcade was on the cards. I think we both walked out of hospital in a haze. He did find Velcade had an easy effect on his body,plus once you have had one treatment you do have more knowledge and it helps.
As for black eye have you been walking in to doors in your sleep.!!,pins and needles not great,have to boost your circulation here is we're heat and massage helps.
It's nice to have some good news. Love Eve
Hello Eva
I was trying to say once you have been diagnosed and think there are questions to be answered!! Concerning your treatment leading up to Myeloma being diagnosed ,once you write a letter asking questions, the legal implication kicks in, so your chance of any truthful answers if mistakes have been made is nil. As I said lip service springs to mind!,,
Until we have more openness and doctors don,t feel they might end up going through litigation we will not get answers or see improvement when mistakes are made.
I am against most forms of malpractice,only the people concerned know the cost and I am not talking money,trust time and people's life's spring to mind,it is a door which cannot be shut,it's ripples have far reaching affects,I much prefer the NZ way.
My understanding is Myeloma UK are very aware that GP have problems diagnosing Myeloma,it is known they might just come across Myeloma once in there life time.
Most people adapt to life changing events, Myeloma is no different also a lot of good comes out of adversity, I realise myself how lucky Slim and I have been,but I do also understand that lots of people on this site have all there dreams taken away.
Diagnostic mistakes should be recognised not covered up because of legal complications. Eve
Hi Tom
Trials offer availability to drugs, that are many times not available under the NHS.
I do not know how researchers work, it would be nice to have some explanation on there work but I do not think that is the issue here.
The criteria for a lot of trials is based around new patients, patients who have not had treatment,as time goes on you have patients like Dai who does not stand much chance of getting on a trial (sorry Dai) ,Keith was a good example,they would welcomed any chance of new drugs coming out of America,last chance saloon it may be. Are the drug company,s scared of the failer rate. I do not know?? May be some one has answers, why are new drugs not available,to people in a position like Dai.
As for GTT,the dater has been collected for years with no results given to people who are supplying the samples,this seems one sided to me.
Would like more in put from people who know a lot more about it than me.Eve
Hi Everyone
Well the patten is there failer in the GP. Surgeries,what can we do about it?? How can we change it??? Because it is costing lives and costing the NHS a lot of money to give the patient extra life. . I do not believe as individuals we can do anything about the GP.!!!
I tried and failed,lip service springs to mind.I took Myeloma information to GP,never to be seen again.
As individuals we have no power as a group under the Myeloma umbrella, may be things could be changed,I believe a simple blood or urine test can trace Myeloma,can anyone tell me why it's not the norm,example you attend GP bloods are usually taken why is it not on normal blood criteria .?? Is it money!!
May be Myeloma UK can give us some answers??
Eve
Hi Dai
Well you new I would not be able to resist your charms lol (no problems Janet)
I will do my best to put it in some form of order!!!
First Ali,s Revidimide ,the doctor answered her question " if it was your mother" I believe that doctor did the best for patient,but you have to ask yourselves how many doctors would be thinking the same.!!!!
The area I am in,fought hard to get trials, you must also remember its a feather in the cap syndrome,it employs people!!!
I am sure Dai your treatments are all correct,but have to say we have been told after Revidimide maintenance is given.
I honestly believe you do not have a choice of treatment,unless you seek it out and as Tom says become pro active.
They are there!!! But how do you go about finding them!!! Does a consultant sit down with you and tell you what the next treatment is or does he give you options!!! I know what Slims did.
Slim has supplied 7 BMB in nearly 2 1/4 years they know exactly what is going on in his Bone Marrow his Myeloma IgG Bence Jones has been well tracked, they do have data,the patient has no results except what they can glean from any paper work they can get hold of, and sometimes you can ask until you are blue in the face,you still do not get it!!!
Look on the American Site,everyone has all results from test.
It takes awhile and a lot of un answered questions, 5 months for me,to ask what is important to them. The phrase do no harm springs to mind,do I think no treatment in 5 months is doing no harm to Slim!!lots and lots of questions,I have asked for PET scan,told they do not use it on Myeloma patients!!! So many contradictions.!!
After that ramble you may be able to understand why I asked the question.
5 more days and I will phone up and find out the result of the last BMB. 13 days before we see consultant.
Hi Everyone
Interesting reading different diagnosis,which makes the difference between damage and no damage!!!
Tom you surprise me,I thought you would think doctor know,s best ,learning new things about you,takes something to question a doctor or 2 doctors opinions.
Tom M. I agree completely with you ,you do have to be pro active,in many ways I do blame myself,I new something was so wrong,just could not get the doctor to listen,once last blood and urine taken ,we saw GP,he told us he was 99 percent sure it was Myeloma and would make a urgent referral while he was doing this Slim was being sick in his sink!!!.10days later we saw consultant within minutes he was admitted AKF plus hypercalcma . So my guilt is I should have taken Slim to A&E long before.
Maureen my concern was I did not want it to be missed every again!! The doctor who diagnosed Slim,was excellent I know she also diagnosed Amyloids in some else also brain tumour it just goes on and on, She moved surgery,local talk is she cost the old surgery to much money,. It changed nothing except a lot of patients like us left the surgery, and I am sure there is an incorrect references in the files,as you will also find out when they answer your questions.!!! You will think you dreamed everything!!.
The problem is time,at the moment you must be angry but so tired,you will not achieve anything unless you are prepared to make it legal.you have to prove responsibility plus causation ,grey men in grey suits,as soon as that happens the legal side kicks in,so you will not get answers that correspond with your version of events. .
I do hope you find an honest person who will tell you the truth. Love Eve
Maureen I have just seen your second posting!! Thought Slims Diagnoses was bad,but Ian beats Slims. Love Eve
Hi Maureen
I do not know how your husband was diagnosed!! So impossible to comment except to say it usually begins with GP, I wrote to my original GP,asking questions wanting answers and I stated clearly no further action would be taken as I understood in general they do not consider Myeloma they consider back problems.
My most important question is after he was diagnosed with vertebra damage plus osteopenia , why he did not send him for an MRI,
The report read
XC. Thoracic Spine
There is a mild anterior compression of what is properly T8 body,possible slight anterior compression of T3 it noted the bones appear moderately osteopenia . Generalised degenerative changes are present at multiple levels.
His other symptoms were sickness,pain.weight loss.
He said it did not warrant an MRI scan. People do not realise these reports are being put on a computer and read by a Radiologist any were !!! New policies,as to no MRI that was purely money.
In the space of 5 months and the treatment prescribed by his doctor which was large doses of Calcium constant visits to doctor he only took blood test!!!, . That's Slims story. It's all about money.
I Wish you luck, as for the treatment in your husbands case while in hospital,sad to say its the sorry state our hospitals are in,it's wrong about his treatment,but I am not surprised,good wards bad wards,I thought they brought matrons back to improve wards not to keep consultants happy running after results. Good luck Eve
Hi Everyone
On reading all comments about maintenance ,I would like to add mine.
As people know Slim only got six months after 100 daysSCT .he was randomised. No maintenance . He had complete remission ,I do wonder if he had maintenance would he have got longer????.his general health,cough colds infection is excellent,and his bloods have proven this !!!,so to all accounts we would not have known the Myeloma had returned!!!
When we found Myeloma had returned and is 10 percent in bones,so just going out of remission ,I asked and would have liked him to be given Velcade again,as it stood at 10 Percent!!!. Instead full exRay plus MRI done and another BMB done on the 7 May. We await results will see consultant 24 May. 5 months with no treatment .
We are expecting a high percentage in bones as Slims tiredness fatigue plus kidney functions are showing change!!!
My Question is have the TRIALS become more important than the individual patient???????
Love Eve.
Hi Dai
Well you are wrong about one thing,I am not sorry I asked!!! I hope you have a really good summer,I know how much I miss about our life before MM took its toll and living on memories is not the real thing,2. 1/2 years for us,with six months remission when Slim was not great is not enough. You are a lot longer and like us whole routine changed you because of moving. Us because we travelled so much.!!!
You do seem to have energised yourself and with the warm weather coming I hope you and Janet have a good summer, do not envy Janet the gardening,my back could not take it these days.
I met Babs from this site the other day,it was nice to meet someone in person,but it did bring home to me the further you go on this roller coaster the passengers are not at the same level ,so imput becomes less for your personal situation !!!.
I am finding this site helpful to gain information.
Do you know how Scotty is, Marie from SE has not posted since husband had second SCT!!!!
The sun is out and the beach is calling me,the dog just comes along for the hell of it,it's awfull being able to see France so clearly and knowing are chances of any prolonged stay there is out. I am off to enjoy the sunshine. Love Eve
Hi Dai
How are things going!!! 10 days is a long time when you are waiting to see what results you will get from GCSF,do you feel good in yourself !!! Are you able to enjoy some free time away from medication!!
Spring is late this year,but it is lovely to see the blossom and flowers in bloom,so looking forward to the heavy smell of the bluebells,I feel they have been missing from our lives for the last two years so hoping to get a chance to walk through the woods this year.
It must have been hard hearing about Keith although it was expected . I hope you have turned the corner and have a renewed energy to carry on fighting. Love Eve
Hello The Wife
Welcome,sorry there is no name,my names Eve,and in a very similar position,except we know its back,how quickly it is going we do not know,Slim has another BMB today!!!.three months from his last one.
Please have no secrets between you,if he is in pain he is thinking the same!!!! Be open talk it is the only way to get the facts,it matters what you two think,peace of mind is a wonderful thing,not knowing is an awful position to be in, I would rather go with my instincts I do not mind being proven wrong,infact I would be very happy!!!,but I know my husband better than any consultant.
The blood test normally show change,this is we're it should be picked up!!!,but if it is not and you still have doubts ,tell them how you feel ex rays show damage,but places like shoulder blades do not have a flat surface so they are hard to define!!!!
As a BMB is the only sure way of telling with my husband,I pushed for it,and was proven right,what I did not expect was having to wait another 3months for another before they will consider treatment!!!! I know they are saying to me any other test will not make any difference to the situation and I agree,but it would confirm the situation,and not leave us in a situation of waiting over 3months in limbo.
My advice is tell them you are not satisfied ,and ask for BMB to be done as it is the only way to confirm Myeloma is in the bones. Eve
Hi Sue
We all new Keith,but not you,I hope you can find some comfort with the knowledge,that he will be missed by his cyber friends, he never posted a photograph of himself,but we all new when he was not posting specially when he new that time was not on his side.
He made time to reply to other people who asked questions,as Keith was ahead of many on here,he did not just fade away,he faced his end,and told us in a very easy manner,that time was not on his side.
I wish you well and hope that your future life is kind to you. Eve and Slim
Hi
Sorry to hear about mum,nose bleed can be the result of many things,Myeloma is a blood cancer,which brings problems with blood eg platelets or blood to thin because of other drugs,needed to treat your mum,your mum is in the right place,they will take blood and find out why your mum is having a nose bleed,talk to your mum,she will be relieved your asking questions,until you ask she will not want to worry you plus something's you read can be frightening.Eve
Hi Pat
Just to set the record straight,I am a scouser,living in SE Kent,my family up north,would say I have a plum in my mouth after years of living south of the Thames .I am no Cille Black,I think Slim would divorce me !!!! I suppose because I left my roots,plus travelled I do have a different out look,plus Slim could live out of a suit case,that helps.!!!
Love Eve
Hi Peter
I read the article plus comments,my thoughts on this, it was sad to hear the last comments !!! I think if you are generally healthy,it gives you a head start when cancer strikes,but I do not believe if you do deprive yourself of things you have found a magic Formular .
When Slim got Myeloma I took up reading all about diets ,and came to the conclusion if your eating habits are good,and you are healthy,why put yourself through these mad diets.?
The strange thing is Slims taste buds changed,loved his booze now complete tea total 🙁 but now likes puddings needs a sugar fix,I read an article saying sugar feeds the cancer cells,I do think research on how patients diets or eating changers might help in the long term.
Myeloma is like most cancers,when it comes knocking on your door,the why question comes up. Love Eve
