Hi David.
I can’t use the word remission as I’ve never achieved it. The best I can say is my disease is stable and that seems to work.
I’m busy transferring all my music and DVDs onto my new self assembled computer and that’s taking up a lot of my time. I did think it wouldn’t take long when I started out how wrong was I!
Every days a gift.
And a day nearer the next holiday
Andy
Hi Carol.
We were insured through “now I can travel” they have a web site but we deal with them over the phone. Be prepared for a long call because they ask lots of questions.
Web site is http://www.nowicantravel.co.uk the phone number is on there. Good look 😉
Every day is a gift
Andy xx
Hi Helen.
Fortunately for me my taste buds have got their act together now I’m off the cyclophosphamide and I can taste things again. So as they say I’m making hay whilst the sun shines and eating and drinking well. Not to excess of course 😉
How’re you getting on? Are you still yearning to return to work?
Hi Tom.
Drunk on a Sunday afternoon lol well done mate. 😉
After my scare the other week I think I’m back in the old routine and the beer at the weekend was most enjoyable.
Those blood results look brilliant.
My last HB was 96 not sure what my WBC was tut PLTs were 101 and Neuts were 1.2
Will have to see what effect the Pomalidomide has on them on Friday. I think my Neuts will take a hit.
No matter what I’ll have a beer or two cheers
Every day is a gift
To be enjoyed with a cool beer
Andy xx
Hi Julie.
Sorry to hear your mums struggling. The reason they will be trying Velcade again is because it’s kinder to the kidneys. I’m on my 5th line of treatment and I haven’t had a SCT either not because of my age, I’m 55, or fitness but due to the hammering my bone marrow has taken from all the drugs they have tried on me. The only drug I’ve had any success with up to now has been Revlimid CRD which only stabilised me. Though that was for 22 cycles. I’ve now moved on to Pomalidomide as the CRD was failing. The bad news is with every treatment the bone marrow is damaged and so it’s function is reduced which is not good news for me as I’ve been on full chemo since Oct 2011. The issue of quality of life is a major concern and the balance between treatment and no treatment is a tough call. Maybe a reduced dose given less frequently as a maintenance regime can give your mum the quality of life she wants whilst keeping the myeloma at bay.
Good luck.
Every day is a gift
Enjoy them
Andy xx
Hi Ozzy.
I was on Revlimid CRD for 22 cycles and other treatments before that CDT etc I was on tinzaparin and I injected myself over 700 hundred times. I’m now on a pill as Eve says it called Rivaroxaban and I take one a day so I’m no longer looking like a dart board. I go abroad a couple of times a year and haven’t paid more than a hundred pounds for a weeks cover for me and my wife and it covers me for my myeloma and Stephs diabetes. When I was on tinzaparin I took the needles in my hand luggage so not to lose then and I had a letter from my consultant for customs not that I ever needed it I just told them I had them and they were happy with that. I’ve been on chemo constantly since Oct 2011 mainly CRD and have had no trouble traveling abroad though I do check with my consultant that it’s safe to travel first.
Hi Stephen.
You are taking a big risk in traveling without cover for your myeloma in my opinion. Just about everything that you could fall ill with could be linked to your myeloma and you could end up with a massive medical and repatriation bill. Any illness will be blamed by the insurance company as being due to your low immunity due to myeloma. Broken bones also will be blamed on myeloma too. Insurance companies are experts at avoiding paying out for claims. Our last trip to Greece in September cost me and my wife £86 for the week as I said above that covered my myeloma and my wife’s diabetes. We had been quoted in May for £870 for a week in Greece but got that down to £95 after a couple of hours on the phone ringing around.
Every day is a gift
Enjoy each and everyone of them
Andy
Dear Dusk.
Unfortunately we don’t know anything about you. Your experience of medical matters, your age, where your being treated, your history leading up to diagnosis etc etc.
So giving advise or support tailored to you is difficult. So I guess some assumptions will be made.
I wouldn’t belittle any point of view you have. I may not agree with something you may say but with the lack of even a little knowledge of your journey to date I will only relate to my journey and that of others on the forum that I am more knowledgeable of.
I was diagnosed after 18 months of back pain and been sent to Physio after Physio till a couple of X-rays and a blood test confirmed Myeloma. Well actually I think it was the BMB that was the definite confirmation.
My BMB was very easy too – though in my case that was because my bone were very soft due to the myeloma. When the results were ready I had a meeting with my consultant and specialist nurse and was told the route I would take to a hopefully long remission. At this time I was only armed with what I’d read online and in leaflets. It seemed very straight forward CDT for around six cycles and then a SCT followed hopefully by a long remission before the inevitable relapse. My wife and took as much of it in as we could and I signed on the dotted line.
Anyway CDT didn’t work for me so we discussed the next step. I knew a little more by now so with my consultant we discussed the next options and we decided on trying PAD which didn’t work either. Fortunately I didn’t get PN as a side effect.
When discussing my next line of treatment my consultant mentioned a treatment that wasn’t used at the hospital but had been used at the one where she had worked previously it was a harsh regime meaning. After some thought my wife and I agreed to give it a go. A 4 day stay in hospital with a multitude of infusions at the same time. Very hard to sleep I can tell you every time I moved I’d set a bleeper off. The treatment was call DTPace unfortunately that just wiped out my bone marrow and left some Myeloma cells. As another BMB confirmed.
I was then passed on to Prof Jackson, a national expert on Myeloma for a second opinion if you like. He ruled out an auto SCT due to my bone marrow been too battered to be able to produce enough stem cells and suggested we look into having an Allo SCT. He did say in my case it was a matter of urgency. Anyway after bloods tests only one match was found and further tests proved he wasn’t a good match. After much discussion about quality of life and the risks involved we didn’t go ahead with the Allo.
I was then started on Revlimid not a standard treatment at the time.i managed 22 cycles before it started to fail me. All the time I was on Revlimid I was never in remission the best I achieved was stable.
Now I’m just starting out on Pomalidomide hoping that will get me back to being stable again.
All my treatments post CDT have been fully discussed with my consultant and I’d like to think we came to a joint decision.
I only ever see one doctor/consultant for my treatment unless I’m referred to others for specialist treatment radiotherapy etc. I do see other doctors/consultants in the day unit when I’m in for something unscheduled ie infections etc when my consultant is away but at my regular appointments it’s alway the same doc.
I have 24/7 access to the haematology department and have used it several times and been admitted to the hospital that way. No waiting for a GP or going through A&E because time is crucial. The longest it’s taken is 90 mins from home to hospital bed an the initial assessment. I used this service again a couple of weeks ago, unfortunately, can’t be too careful with infections and I had a 4 night stay. This was at night if I gave a problem during the week in office hours I go straight to the day case unit as instructed they can be very bossy.
I don’t go to my GP for any health problems it’s always to the hospital first because they have impressed upon me the need for speed in treatment.
That briefly is my journey so far with myeloma. The medics are doing their best. I think I’m getting good care. I know my days are numbered it did cross my mind the other week that my time was up! But the antibiotics did the job. I’m not angry about having myeloma or not being able to have the latest drugs that are available else where. I’m not even angry about the delay in diagnosis because the way I see it I am where I am and being angry over what ifs to need is a waste of energy and time. So I’ve accept my past, I can’t change it, and I try not to worry about the future, it’ll always be what it’ll be. I just try and live each day the best I can because that’s where I am.
Please don’t think that I’m having a go at you for being angry because I’m not everyone has a different way of dealing with things. I would suggest as probably already been pointed out that at every consult you take a list of questions or concerns with you a note the answers given. Some take digital recorders with them so they can review the whole consult in their own time. You say you have knowledge of clinical issues well knowledge is king. Use it and if you don’t like how you are being treated you can alway get a second opinion as you will be aware though I suppose the same NICE protocols may be in place. You need to have faith in your team because it’s your life and you need to feel they’re on your side.
Please don’t give up on the forum because it is a great place to come for a good old moan you will find nearly everyone will try and be helpful. Though if we knew more about your journey it would be helpful. Not personal stuff just how you were first aware and the journey to where you are now. Your thoughts on the nhs are just as valid, maybe more valid, as anyone else on here but we are all different with different views on how it should be run.
Anyway that’s enough from me for now. Can you tell I’m on my Dex today?
Every day is a gift.
Live it to the max.
Andy
Hi everyone
I’m back on the beer whoops I mean Pomalidomide started again Tuesday. My neuts were 0.7 on Monday yeahhhh.
Had my bloods checked Friday and my neuts were up to 1.2 which is high for me. So went out for a celebratory drink last night.
I’m expecting my neuts to drop as I get further into my cycle but hopefully not so far that they need to reduce my dosage. When I was on Revlimid my neuts used to go down to 0.5 occasionally and never got much over 1.0
No side effects to report – yet. It’s early days so I’m not counting my chickens just yet.
Every day is a gift.
I’m off to the pub when I’ve finished counting my chickens 😉 cheers
Andy xx
CDT is used for initial front line treatment because it is very effective. Also a cheaper option I must admit. Velcade is not a wonder drug it has serious side effects and it is also considered to only give short remissions. Just because drugs are new doesn’t mean they are more effective than established treatments.
In the USA you get insurance based treatment. You got the best insurance you get access to the latest most expensive drugs that the medics want to prescribe – more commission for the docs. No insurance sorry no treatment. I’m not saying the expensive drugs don’t work just that the USA health system is profit driven first the patient come further down their list of priorities. In the UK it’s different our drugs are given more on a cost effective base but the drugs that are available are not restricted to the rich only.
No one can second guess which drug will work for which patient though genetic profiling is beginning to be used as an indication. So the established protocol is used. With CDT the first treatment. Not everyone responds to CDT and they move on to the next drug but lots do respond the CDT and move quickly to SCT with great success.
Unfortunately at the moment the medics can’t say which drugs will work best with which patient. So there has to be some sort of order.
Remember no matter what drug we use we will relapse even if we get to SCT we will relapse. So eventually if we live long enough we will get to use most of the drugs out there.
I’ve been through most of the drugs available and not achieved remission with any of them and not got to SCT and will never have a SCT auto or Allo. I’ve been on chemo constantly for nearly 2.5 years now. Like everyone one knows myeloma is a very individual disease and my version of it is not typical.
Everyone wants remission with the fewest side effects of treatment but I’m a bit suspicious of drug companies saying the newest more expensive drugs are better. Though I do think NICE could be quicker with its evaluations of the newer drugs.
Hindsight is an exact science. Second guessing what will and what won’t work at the moment for any individual is just that a gues. Until trials establish a new line of treatment we’re stuck with the one we’ve got.
Unless of course you got loads of money and afford to go private.
Every day is a gift
Don’t waste them
Andy xx
Oh I think most patients with Myeloma have a multi disciplinary team working for them – I know I have. From my specialist nurse up to a Professor at another hospital. I’ve seen them all at one time or another too!
Andy.
Hi Jeff.
From my time on this forum the question of the best hospitals for treatment does come up occasionally. I know Dia moved from Wales to Nottingham because he felt it was in his best interests to do so. The major problem is for people who don’t live near a “big” hospital they get seen at their local hospital but they may not have a “big” haematology unit or doctors with only a little experience of myeloma. Because of this they nay get shuffled between hospitals, the local one for bloods, drugs and routine stuff, but may have to travel to the bigger hospital for the big stuff, SCT, MRI’s etc. This is not ideal though it is a common situation.
Myself live near a hospital a largish one and most of my treatment has been there. Though I’ve had treatment at a hospital 6 miles away, not a great distance I know, I’ve also been referred to a hospital 40 miles away and it’s also been suggested I have treatment on a trial at a hospital 130 miles away. Although the travelling would be horrendous this gives me confidence my team is working and doing the best for me. Others may see it as a lack of confidence in their team and begin to question whether they’re getting the best treatment.
At the end of the day nearly everyone’s opinion will be different. But you do need confidence in YOUR team/hospital and if you’re not comfortable it is possible to have second oppionions and ultimately change hospitals. Or as in Dai’s case move to be nearer a hospital you feel will serve you better. It’s your health and we only get one shot at this life it’s up to the individual if they’re unhappy to do something about it.
Energy then can be much better spent on fighting to stay alive.
As with most medical problems there’s no one cap fits all with Myeloma. Drugs that work for one don’t work for others. SCT gives long remissions to some to others hardly any remission at all. If you looked at my history of Myeloma and assumed I was typical of patients at my hospital you wouldn’t touch the hospital or my consultant with a barge pole. Yet I see patients there who have had sct’s and been off drugs for 10 years.
Dusk
Myeloma is very easy to detect a simple blood test is all it takes. Getting GP’s to recognize Myeloma is difficult mine didn’t recognize it at all. A GP on average will come across one myeloma patient in their working life. So it’s never at the forefront when they are diagnosing patients. MyelomaUK have started to run myeloma awareness campaigns for GP’s so hopefully quicker diagnosis will happen.
Haematology and oncology are two totally different fields of medicine. Haematology consultants do sometimes have meyloma as a special interest though they have a wide range of haematological conditions to deal with. Hence hospitals only dealing with myeloma on one day a week because though very real to us it is a rare condition.
Oops I’m starting to write too much again! Can’t even blame Dex tonight. I’d better get some sleep big day in the day case unit for me Monday!
Every day is a gift.
Don’t waste it.
Andy xx
Hi everyone.
Well here I am it’s a week tomorrow errr nearly today now that I was discharged from my little stay as a guest of the wonderful NHS. I’m still feeling ok, though I was feeling ok before I was rushed of to hospital, and I take the last of my antibiotics tomorrow morning.
I’m at the day case unit Monday for blood tests and a decision on when I restart my treatment will be made by my consultant then.
Hopefully my Neuts will have increased a bit. Anything over 0.6 and I will be out and about again, carefully of course, enjoying our glorious weather and maybe enjoying a pint or two in the pub at quieter times. Got to keep away from buggy people.
So fingers crossed I’ll be restarting my beers oops I mean my Pomalidomide in the next few days.
Every days a gift.
Beer or no beer it doesn’t matter 😉 much
Andy – been carefully watched by Steph xx
That’s great news David.
Let’s hope it stays that way for a long time.
Every days a gift
Andy
Hi David.
Glad they’re on top of your DVT at last. As been pointed out its a well known side effect of Revlimid and all the Thalidomide based drugs. I’ve been on anti coagulants since diagnosis. Must of injected myself over 700 times. I’m now on Rivaroxaban so at least I’m not stabbing myself any more.
Every day is a gift.
Made more pleasant not having to inject one self
Andy
Hi Elaine
I’ll look out for Bathams next time I’m shopping! Who am I kidding shopping lol. Though I will keep my eyes peeled for it and try it.
I’ve just had a stay in hospital and I’ve been taken off Pomalidomide till I recover from whatever was ailing me. I only had 3 of the little devils to take to finish my first cycle but a temperature 38.6 put a stop to that.
Hi David
How’re you getting along? Good I hope.
I’m starting to wonder what my hospital stay will do to my insurance premiums for Greece in May. £700 for a week in France seems a lot. For me and Steph it cost us £65 for 3 nights in Belgium and last October £85 for a week in Greece.
Hi Liz & Kev
You’ve got to go to the beer festival at least once it’s an amazing experience. Well to me it is.
We were supposed to be down in Nottingham last weekend but unfortunately I spent it in our local hospital instead. You just can’t plan anything with certainty with this MM! Anyway all is good again now – I think.
Every day is a gift.
Not just for me for everyone.
Andy xx
Welcome to the horrible world of myeloma Dusk.
As someone who has not been on “great” myeloma journey I’m going to through my thoughts in the ring.
First at diagnosis aged 53 I was told myeloma is a very treatable but incurable disease. I was started on the usual CDT with the view of SCT a few months later.
Now to cut a longish story short I’m still alive 27 months later having been through all the frontline treatments where none of them worked for me. So I’ve never got to SCT. The only regime that dampened down my myeloma was RCD ( Revlimid ) and I was on that for 22 cycles before it was deemed to have started to fail. All though Revlimid is now widely used when I started on it it was rarely prescribed. They are now trying me on Pomalidomide though that has been put on hold due to me having a recent hospital stay. Pomalidomide is not on the NICE list as yet so my consultant had to apply for it through the Cancer Drug Fund. At a cost to the NHS of nearly £11000 every 4 weeks! Which is about £3000 more than Revlimid cost.
New drugs don’t necessarily mean better drugs. There have been lots on this forum who have got to SCT using CDT as their frontline treatment with only 6 cycles and gone on to long drug free remissions. Others get there with the help of Velcade after CDT didn’t quite manage it.
Everyone’s journey with this horrible disease is different.
America is a different health system to ours and is driven by money. Got insurance and you COULD be ok got no insurance tough! It’s not all bad in America but personally I prefer our system.
The benefits of SCT v drugs is a debate that is going on right now and who knows which way that debate will end. No one is forced to have a SCT though at the moment it is still recognised as the standard treatment.
Post Code “lottery” is something I haven’t come across regarding the treatment of myeloma. Though just because I haven’t come across it doesn’t mean it doesn’t exist!
My final thought is use the front line drugs first and keep the newer novel drugs for later when you’ll need them because no matter which drug you have, SCT or no SCT, you will relapse your myeloma will mutate and you’ll need the newer drugs then. You want as many drugs as possible in front of you not behind you. Then hopefully you may get to see myeloma down graded to a chronic disease.
I’ve been a member of this forum since 2011 and although there have been similar journeys no two journeys have been identical.
Every day is a gift
Make sure you use them
Andy xx
