Hi Dick
It's not just sad,it's wrong!!
The fact is the treatments involved are excellent plus the best for most Myeloma patients. New patients in the right post code have the avaliblity of trials,but the patients that are not responding have little choice the consultant has no choice.
My husband had on trials MX1 was randomised for CDT after 6 cycles had increased to 80 percent .failed.
Then Velcade on same trial.responded well.had SCT. Failed removed from trials
Now it's third line CDR,because its hard to monitor he will have BMB every 2 months!!!
We are hoping this works,given the choice,we would have preferred to go down a different route as CDT and CDR,no matter how good are the same based drug.
Trials are not open to my husband!!!
It looks if it will not be considered compassionately until he has tried CDR
There are many words missing from medical jargon,like compassion,peace of mind, Love Eve
Hi Helen
Good to here you are being pro active as young Tom would say, I would gladly have a bet with you,they will still make you wait,they know best attitude !!!!!
The Velcade takes so long because it ends up going to five different departments and if there not on the ball,or forget to send it to next department,!!! And as you say they will not make it up until you have signed in, and you are lucky because you are subcutaneous the other way the procedure is at least 30 minutes and hours waiting round. I think it is Dai,s hospital the whole procedure from bloods to Velcade takes only 1 1/2 hours. In Slims case we said hello to staff walking in and we were often saying goodbye to them going home,this is when I took up rally driving,:-P
Slim starts REV. Soon, but told them we are having a holiday first,So new van packed,hope now to get off on Sunday as Slim just about finished,fatigue ,bone pain ,big ones.hoping a bit of sunshine will help…8-)
Using CRD until knocks Myeloma back then maintenance until it does not work,Claxane injections daily plus BMB every 2 cycles to monitor Myeloma,that's the order of the day.:-(
New system in place at hospital so hoping to see progress ,I am going to make sure that we spend as little time as possible in the unit,
I stopped knitting years ago,Slim could not stand the clicking of needles then,so would not stand a chance now,since Myeloma he has become sensitive to noise,
Time to finish packing van,looking forward to going to France,Keep well love Eve
Hi Margret
Welcome,
Bonefos question I cannot help,but I was surprised you have been a drug so long,you do not give a great deal of detail,have you been Diagnosed with Myeloma or are you looking for an illness for symptoms????
With the drug you are taking plus quantity and length of time,it must have some effect,why have you been on them so long!!!
If you do not want to disclose details. Give Ellen a ring it,s private and confidential ,she can help with any questions or fears.
Please do not be surprised,the people on here are not replying they are a good bunch but very unlikely to have come across your problem.
My husband was on a drug for osteopenia ,which made him baulk then vomit ,the diagnoses was incorrect,calcium was building up in kidneys plus had hypercalcma it was Myeloma,but lots of people taking calcium supplements have problems, I know some drugs have to be taken standing up and a few hours between other drugs,they do not agree with everyone.
This is a very broad answer,the best person to help you is Ellen. Eve
Hi Maureen
Good to hear from you,it will do you both good to get away from hospital,I use to sneak Slim out a lot,as he hated the hospital and they had no day room,We use to spend a lot of time in the chapel .
I married Slim after 30 odd years together,are anniversary is 24 May married in ITU,we tried for 14 February but Slim was in hospital then set date for 26 but there was no way he was getting out,so married in hospital,he say,s he has grounds for divorce as has no memory!!!
Bad news is officially relapse ,off MX1 trials,Revidimide next treatment,but have put it off for 2 weeks so we can have a short holiday,catching boat Saturday or Sunday,France here we come,have to be back for bloods around 7th for introduction and Zometa on the 10 of June .
The Great Escape begins,because it will e sometime before we can make it abroad again with being on treatment.
We are both remaining positive,more organised this time, everything ordered,chemist on board,appointments soughted and I intend to make sure all appointments are combined so we spend less time in hospitals,2 1/2 years non stop, love Eve
Hi Tom
I am very thick skinned,and I do not just mean I am fat.but I have a very soft centre. Luckly Slim loves me,he would be the first to tell you he loves never having to worry about anything. (Control freak ) never,just cannot abide a job not done properly.
Helen if you are taking up knitting can I put an order in for a cabled sweater,,!!!
Tom I am a G&T ,vodka no thanks,in Portugal they make Viga out of Figs ,sure it means fire water or gut rot.more or less the same as vodka.
Love Eve
Hi Helen
To be fair about the unit,they have improved,opened another section,have taken on more staff,volunteers who help in hospitals fetch and carry drugs,before poor nurses were doing it,and would not let carers do it. So they did listen after written complaint, I do think they might be dreading us returning. LOL.
May I suggest you take a rather large book to write in,do a time and motion study,chart your own experience as this would be good feed back from the patients perspective , I left it far to late,use to comment verbally,by the time I got so angry Slim was near the end of treatment.My complaint was Lack of Co Operation between Departments,as they just do not seem to work together,when you have mistakes because staff are busy,for example prescriptions not sent down in error,the pharmacy still make you wait.So it's the patient who suffers.
The problem you have Helen is you are not institutionalised,you should know as a nurse anyone spending long periods will eventually become institutionalised and more compliant with the situation,go on be a rebel or even pro active as young Tom says,it's normal for me.;-) 🙂
Saying that I sent an e mail to Slims consultant with the knowledge of a Myeloma Trials person,no reply yet,consultation is tomorrow morning.:-P
My job many many years ago,was dealing with complaints !!!
Interesting story today,recently we have changed surgery,s as after Slims fiasco with old GP,the doctor who diagnosed Slim left old surgery,she is a good doctor and rumour had it,they got rid of her,I was told today over 400 patients left the practise.
The one thing you can do is vote with your feet.
Good luck Helen.Love Eve
Hi Mandy
Nice to hear from you also good that you are being positive.
I originate from Liverpool,I remember the Royal is it the same old hospital,???? It was a good hospital 40 years ago, I had a baby in the Royal,we had a saying . Book your bed and then get pregnant..?
Make the most of your freedom why the still allow you out of the room,it will be awhile before everything kicks in,handy to have Internet connection,to keep in touch with loved ones and friends,including your new cyber friends.
Have you had your hair cut in advance,do not want to go plugging up Liverpool. Drains.
Why not keep us up to date on here as people who are approaching this might help them.
Keep in touch.Eve
Tom and Dai
First Tom,it shows in the eyes.
Dai in the south the woods are covered,next week you will be lucky to see them,the blossom on the trees is going due to wind and rain,we watched a niebour with here young daughter picking up handfuls of blossom like confetti ,throwing it up in the air,gone until next year.
Such a lovely time of the year. Eve
Hi Tom
We started travelling many many years ago,I alWays said I would never take photo,s if truth be told I would bore my kids ridged with them.
To me the whole point of an adventure,is for Slim and I to share,it belongs to us,wonderful times,lots of travel,my kids and grandchildren have to find there own adventure,my photo,s are in my brain,not the still image,often the smell of things bring back a wonderful memory,do not think you can bottle that or photograph it.
32 years and hoping for many more. Love Eve
Hi Jo and Jean
Hope you are both keeping well.
I bet the house is spotless Jean takes time to get them back on there feet.:-)
We are waiting on results,phoned but they said they were not in!!!!Consultant Friday!!!
We have just bought a new Motorhome!!!! Other one was to big for me to manage chores ,but the new one is more manageable ,so we are hoping to have a break!!!. Taking a leave out of Andy,s book!!!
Going to find more bluebells. Love Eve
Hi Helen
I am the carer,and cannot blame the dex8-)
Hospital waiting times,grrrrrr organise yourself s if I started,I would need more than this topic. I found it horrendous ,far easier to do a 60mile round trip,specially when Slim was not feeling to good,I have been known to take Slim home after Velcade and go back on my own for tablets making it a 90 mile trip.
The worst thing about it ,no one gave a dam,attitude was I do my job,must be someone else,s fault:-P
Talking about surveys met a friend who is doing a survey,s for NHS for ccgp,s laughable ,they are asking questions concerning services in GP surgery,s as lots of services are going out of hospitals and into surgery s ,sounds great,but what there not saying its privatisation by the back door.the doctors budget will pay for those services,but has a doctor the experience to diagnose unusual cancers like Myeloma,I suppose GP are cheaper than consultants.:-)
Bring on the soap box plus the DEX.
Glad to hear you do not have side effects,Slims started about the third cycle mainly became anxious,but he new he was being unreasonable,just really believed I was going to have an accident. Love Eve
Hi Tony and David
Spring might be late this year,but its worth waiting for after such a long time not being able to enjoy it.
Slim was in hospital for 22 days first time, I use to drive with windows open along the A2 on the way to hospital at 8am back at 9pm,so spring passed me by.the next time Slim was in Kings having SCT,good hospital,but the area,how can people live without the smell of spring.
My hay fever plays me up something rotten,sneezing and runny eyes,but its worth it.
Picture is great, you will have to tell me how to do attachments,hopeless posting photo,s took all my time to get profile photo up. Love Eve
Hi Dan
That's wonderful news,give your self a pat on the back,you are doing wonderful. Please take time for your exams ,they are your future and very important,make sure the appropriate authorities know your problems,it,s important.
There is no magic formula ,the general feeling is your dad should get 1/2 the remission ,but lots of factors come in to play,
Your dads physical fitness plus state of mind,many people have got more time second time round!!!!!.so work on what's possible to day,the fact that they are considering another SCT is good,your dad is getting some movement back in his legs,!!! All good news.
So happy for your dad and you,but you must take time for your life. Eve
Hi Helen
Slim had 6cycles he was much better in himself. On Velcade,hated the messing about between bloods and treatment,we did try to vary it as spent an awful lot of time just waiting round eg bloods 9am Velcade 3pm never,never on time,also once a month tablets late as usual by hours usually 6pm. Towards the end went in at 9am took slim home,went back at 4pm 60 mile round trip.
Very little side affects remember him getting anxiety symptoms,thought I was going to crash the car,he new he was not being logical!!!.one more that wil not effect you,pain in testicles,infection one of the less known side effects.
If you could work through Revidimide ,I think you will be alright on Velcade ,PN was Slims problem towards the end but not bad,did need to massage plus change duvets as to heavy on feet. He was on Claxane right through treatment,plus I did keep antibiotic s in the house,his skin became very weak,would bruise easy plus break,although I treated it infection would start,so had minor trips to are local hospital,who often supplied us with latest dressings plus antibiotics.very helpful,but of course new nothing. About Velcade.
Helen you enjoy working,if it means long hours on your own at home,stay at work,I think the biggest danger is depression .as you do not live far from the hospital you should find it a lot easier. If work is happy,go for it. Love Eve
Hi Rangecroft
Welcome,I am interested in your reply as my husband is at the stage of remission ending,and going on Revidimide . We will know in the next couple of weeks.
I am not convinced about Revidimide as thalidomide treatment did not work for him, but it is the next line of treatment,so many cycles then used as maintenance until it stops working !!!
You seem to be able to maintain a reasonable healthy life style as well as going on a cruise,we had a few holidays during his 6 months remission,but now a little bit concerned about health cost,would be interested to know how you managed it.
If you prefer to explain separately ,you can go to my profile and reply.!!! Eve
