[mhnevillParticipant]

Dear Dai

Do hope this week's Velcade goes better for you, that the leg continues to improve, and that you get a good run upto your holiday. Surely it must be your turn to have some good luck.

And to Brigit

Do hope you too get over this tiredness phase. Mind you ,having had so much pain lately is bound to have taken it out of you.

Love to your both!

Mavis x

[MinParticipant]

Hi Dai,
Whilst I wait for the phone call to go collect Peter, I remembered that when he had his back op last week he had to wear the compression socks( delightful) and the nurses gave him a plastic bag to put on his foot and ankle which allowed the socks to slip on quite easily.
Hope the swelling is still receeding and the velcade side effects are bearable more importantly
Have a lovely break(holiday)
Min

[DaiCroParticipant]

Time out!!!

That's it… infusion No.4 of Cycle 5 complete… I now have my 10 rest days (first 4 usually grotty with a gradual build up to feeling pretty good by day 10), with platelets, neutrofils and HGB on the up towards the end…

Only this time I will not be starting Cycle 6 because it would mean a break mid-treatment for my holiday and they don't do mid-treatment breaks… which means I get my 10 days… + a week before my holiday… then a week for my holiday – giving me a total of 24 days off before starting Cycle 6.

Whoo… as our American friends are fond of saying… Hoo!.8-)

I came out of the day-Case Unit bouncing. My favourite Nurse in the whole world (my lead Nurse Jenny) is always nervous of my veins but she popped the Cannula in first time and I was in and out of Day-Case (including waiting time) in 45 minutes… a record. Everything went like clockwork, Jenny took bloods and ordered a 'Freelight' test (so I will have an update on my Myeloma counts when i get back) and I am left with time to recover, build up strength and get ready for my holiday… whoo hoo!:-D

Yeah, I know… one second whingeing and whining, another making stands against negativity (mine most of all) and then pogoing up and down because of a 3 week break… but to me it is a positive, two-steps forward move… my spirits feel lifted and if there are any set-backs between now and then (whatever they measure) then I… no says Janet… we, will deal with them.:-)

Dai.

[RozParticipant]

Sorry about missing your emails.
sorry you have been so bad, but as usual your fighting the fight, it must have been hard for you.
Having had DVT myself 3 times I know how hard it is but to deal with this horrible disease too must have been a nightmare.

hope you have a good break
Love Roz

[brochoParticipant]

Yippee ! There is nothing like a good day at clinic to lift your spirits Even better when you manage to get out of there in record time!! Your post made me smile becauseI think we are all probably the same in being cheered up by something as simple as not hanging around clinic for hours on end !! Enjoy the breakand by the time the next cycle starts your batteries will be fully recharged and you will be raring to go! love to you and Janet x

[DaiCroParticipant]

Thank you Roz… I missed your garden post but I like the simplicity and clean lines of japanese gardens and yours looks very similar… a rake and some weedkiller and you are away. 🙂

Hi Bridget… I was amazed at myself by how easily pleased I was. Janet stopped off at a petrol station mini-supermarket and I bought smoked cheese, sausages and bacon. Janet whistled up sausages, bacon, eggs and beans with some crusty white bread and real butter for lunch and i enjoyed it hugely.:-D More sausage and some of the cheese plus sun dried tomatoes and feta with salad for today… bliss Oh, and a small bottle of cloudy ginger beer which i forgot to drink yesterday.

I find that when life is simple that life is good… especially when it is in my power to make it and keep it simple. I just have to climb out of my head and allow my body to dictate my needs.

Simples… as I think they say.:-)

Dai.

[eveParticipant]

Hi Dai
if you can,i would like to ask you a few questions or if anybody looking at this post who could answer them,
Its about the Velcade,Slims on 2.3 at the moment 2 shots one Tuesday and one Friday, 9 oclock bloods then although told to come back at 1 oclock did not get jab till 3.30 .left home at 8 got back at 4.30. (screaminggggg) poor dog desperate for a leak.:-P

Will not do that again, in future 9 for bloods,then go home 5 for injection,2 round trips 60 miles altogether,At least Slim will have a Rest,and £73 attendance allowance will pay for petrol.:-)

Now to questions,Slims bone marrow is 80% affected,he is on a 3 week cycle and will be having bone marrow taken each cycle as only way to tell how myeloma is doing,bloods and urine not true reading,myeloma has advanced after 6 cycles of ctd.how do they judge your Myeloma?????

Did you have any side effects after first two injections ,Slim has none,except feeling dizzy when lying on his back,so up most of night!!!!

Waiting on MRI scan for pain in back,would have liked cat scan as well,because no follow up on lungs,after septic pnuemonia,although he has injection every day and will be on them for 6 months,now with Velcade the chance of dvt is there.so may go private for peace of mind.
Has anybody out there had these problems?

Do not worry if you do not have time to reply enjoy your holiday and say hello to those beautiful wild wild cliffs of St. Davids:-)Eve

[MinParticipant]

Hi Eve
Peter did 5 or 6 cycles of Velcade. Getting two DVT s as a result after the second injection.
Once he was on Tinsaparin. (clot buster) he was in no danger from the velcade as the drug is taken for 6months as a prophylactic to prevent any further clots that the velcade caused. His lungs were never checked again other than with a stethoscope because he was no longer breathless. (He has had several since then unrelated and no sign of the problem.
Cannot help with regards to bone marrow as peter has only ever had one of those at diagnosis.
But the back problem I can advise as this was his biggest concern.
Find a hospital with an osteoporosis nurse specialiast[b].Tell them that Slim is on steroids[/b] Book him ( no cost and no long waiting list iether) A Dexa test is the name of the scan that was done on Peter but its a very simple lie on a bed thing while a computer does its thing and it tell you him how damaged his bones are all over.
Following this the nurse should be able to refer you to a spine specialist.
I rang this nurse up in Newcastle to ask her who the best person surgeon would be to get a private consultation for Peters back. She in turn booked his appointment with herself and she did the referal to a spine specialist.
The spine specialist did his operation last week for kyphoplasty and he did the 1st one In Dec 09.
Not many surgeons have had the kyphoplasty training so ask around in the spinal injuries or trauma department.

[DaiCroParticipant]

[i]Hi Dai[/i]

Hi Eve, follow me down, we'll do this in stages…

[i]Its about the Velcade,Slims on 2.3 at the moment 2 shots one Tuesday and one Friday, 9 oclock bloods then although told to come back at 1 oclock did not get jab till 3.30 .left home at 8 got back at 4.30. (screaminggggg) poor dog desperate for a leak. Will not do that again, in future 9 for bloods,then go home 5 for injection, 2 round trips 60 miles altogether,[/i]

In my experience the 'wait' only occurs for the first infusion of each cycle… days 2, 3, 4 are usually done at the time of the appointment… an hour, 2 tops. Once the pharmacy has the prescription from my consultant it doesn't change or be considered for change until the consultancy before the next cycle – I can only assume that Slim's condition means the extra biopsies and bloods mean a 'wait' each time for you… or at least until they establish some sort of control.

[i]At least Slim will have a Rest,and £73 attendance allowance will pay for petrol.[/i]

Attendance Allowance??? What's that when its at home and how do you get it???

[i]
Now to questions,Slims bone marrow is 80% affected,he is on a 3 week cycle and will be having bone marrow taken each cycle as only way to tell how myeloma is doing,bloods and urine not true reading, myeloma has advanced after 6 cycles of ctd. How do they judge your Myeloma?????[i][/i]

Ouch, poor Slim. I'm afraid that we travel different paths here because I have 'Bence Jones' or Light Chain Myeloma… my myeloma is not governed by paraproteins (Heavy Chain) but by the myeloma in my urine… up until recently I would have to bring in a 24 hour Urine test ((In a Plastic Gallon Bottle) but they now have a blood test (Freelight) which is apparently expensive but they use it and it is far more accurate than the urine AND (touching wood) apparently doesn't need confirmation of Bone Marrow.. although I will have to have one at the end of treatment. In Light Chain Myeloma you have Kappa and Lambda measurements instead of Paraproteins – you are measured by one or the other (the dominant one) in my case Kappa. I started my 1st Cycle with a reading of 246 – by the end of Cycle 2 I was down to 13 – Cycle 3 – 11 Cycle 4 – 12… apparently Velcade shows its muscles in the first 2 Cycles and then slows dramatically, so they chip away with the rest to get you as far down as possible.

This is why they have the 'cut off – money back' agreement with the company who makes it. The company reimburses the hospital for the cost of the treatment if they have not got the readings down to 50% of the starting point… and therefore the hospital will also discontinue treatment at this point if 50% is not achieved. Of course, if the discrepancy falls within certain parameters they may decide to carry on (I'd be narked if they got it down to 60% and didn't carry on… but they will take the readings into consideration I'm sure). Dr Berenson (see Jet's video link to his answers and questions session – brilliant) says that sometimes they abandon the treatment too soon as his tests have shown that some patients come good during the latter stages of treatment).

[i]Did you have any side effects after first two injections ,Slim has none,except feeling dizzy when lying on his back,so up most of night!!!![/i]

Yes, I was very ill after my first 2 cycles… but I also had a secondary tumour growing like topsy on my sternum and Velcade completely cleared it, so I'm not surprised – I could literally feel it working… alongside rib and back pain that I had not felt for over 2 years… it was worth it though. Slim's reactions are very much like cycle 3 for me, once the drug had busted the tumour it got on with the rest.

[i]Waiting on MRI scan for pain in back,would have liked cat scan as well,because no follow up on lungs, after septic pneumonia, although he has injection every day and will be on them for 6 months,now with Velcade the chance of dvt is there.so may go private for peace of mind.
Has anybody out there had these problems?[/i]

I have a dvt now and my consultant has decided not to go down the Warfarin/INR route… I assume they don't want to compromise the treatment… so I'm on daily blood-thinning injections for the mid/long term.

[i]Do not worry if you do not have time to reply enjoy your holiday and say hello to those beautiful wild wild cliffs of St. Davids.[/i]

I start my holiday on Sept 2… I'm sharing a house in Fishguard with my brother and two sisters and spouses… we are all meeting up to spend Friday night at my sister's new pub just south of Hereford and then we are travelling down in convoy the next morning… back by the 12th for Cycle 6. I will certainly raise a glass to you and Slim when I'm in Porthgain. 🙂

I don't suppose this helps much but this definitely should – here you are:

http://www.patientpower.info/video/a-leading-experts-perspective-on-myeloma-news-and-your-questions

Please pass on my regards to Slim… if there is anyway I can help, especially with processes and procedures then I most certainly will.

BTW… Nottingham is now going to treat all new Velcade patients by SubQ (subcutaneous injections, straight into the tummy.. no more cannulas and main veins.. far less intrusive and apparently far less side-effects. I am going to try and blog my way into this method when I come back (emailing my consultant in advance) so if Slim is not being treated this way ask for it!

Best wishes:-)

Dai.

[eveParticipant]

Hi Dai and Min
Slims on Meloma X1 trials,he has Kappa Light chain MM.After the first Stage of treatment,24 hr urine bottle and bloods every cycle,they did another bone marrow biopsy and to there surprise found his mm had increased in bone marrow.
I think what they normally assume is urine kappa light chains down,then you are in remission,not so in this case,in fact increased to 80% only showed up by biopsy hence 8cycles of vcd.with biopsy taken each cycle.
Not good news for Slim,but if he had not had marrow taken for trials,they would have assumed he was going into remission,!!!!

He has had dexa scann and the result is " Above average BMD for age in proximal femur.
Waiting on MRI scann to see if pain is from more damage,do not think it is from tumour as chemo is just as effective as radiotherapy and therapy is only used if causing nerve damage,but they will look at it once they do MRI
As there have never been any symptoms eg: out of breath,cough,chest pains,no usual symptoms only infection levels in blood not quiet right.there is no way to tell if he has blood clots on lungs,again cat scann,only done because infection levels not right,that,s why I would like some follow up,If no joy on cat scann I will go private for that.

I hope this all makes sense to you!!:-P

Now Attendance Allowance Slim is 66 so not allowed DLA,Care Allowance is Taxable,so waste of space for me.He is not going to die in the next six months,so that rules out Dying Allowance.
He does need me to help him through out the day and night as he cannot do some personal things for himself,so I get attendance allowance.I also make a good cup of tea,2am 3am 4am 5am 6am,cost me a bomb in match sticks to hold my eyes open:-S

I can see were you coming from with SubQ I asked about it,I think with Slim being on Trials it is a no no!!! they are very precise about,where,when and how concerning all the treatment,you can not deviate ,not allowed.:-0

Min hope you are feeling much better, Love Eve

Glad you will raise a glass for Slim,He has always loved a drink,the poor b-u-g-g-e-rs went off drink and has to sit and watch me hehehe,i have a mean streak in me!!!!!

[DaiCroParticipant]

Hi Min,

So it seems that Slim and i have exactly the same myeloma – light chain/kappa. Do they not have access to the 'Freelight' test at your hospital? My consultant started using the freelight because it is just as, if not more, accurate than the urine and/or the bone marrow biopsy… I know that each test is expensive but if they have the techniology in the lab then they can use it – if they haven't the technology then perhaps there might be a place nearby. A bone marrow each time seems like unmitigated torture to me :'-(

Does Slim have a sedative before biopsy? They don't allow biopsies by sedative for out-patients at Nottingham City Hospital… you have to be an inpatient… which is daft because I have had them before elsewhere without problem… I even had a colonoscopy by sedative a couple of years ago… an hours recovery and I was allowed home with no problems.

I'd ask about the 'Freelight' test if I was you. I'd like to think they haven't got the facility because if they have and they choose not to use it… well, my blood would boil. Mind you, blood-boiling… that's one test they haven't tried yet.:-D

Dai.

[eveParticipant]

Hi Dai
This is getting interesting!!!! I know that the results come from birmingham university.I have some results.i was told that Kappa/lambda was the important one and they read as followed

22/2/11— 258.458
15/3/11— 239.611
05/4/11—- 121.425
31/5/11— 14.672
I have not yet been given June /July/August results I have asked still waiting,blood and urine are taken for trail plus 24 hour urine,some specimens go to Leeds,some to Birmingham and some go to Royal Free hospital London.

I have had to ask for this information,I do not know how the test are done but I will find out if they are Freelight test.!!!!on Tuesday when we go again

Sedative what,s that Dai !!!!even if it did hurt do you think he would admit it!!!!,he is a man who doesn,t admit to pain and thats half his problem,I know when he says he is in pain it must be bad,he broke his ribs in Norway and went on to come third in a 20k race on ski,s with heavy back pack and rifle. I find I have little sympathy for him sometimes

Thanks for that information Dai I will look into it,I will be very upset if I find out they have not freelight tested,because,that means he could have been treated with some other drug sooner,(watch this Space).
We are 86 miles from London,So there is no excuse!!!love Eve

[DaiCroParticipant]

'22/2/11— 258.458 – [b]264[/b]
15/3/11— 239.611 – [b] ?[/b]
05/4/11—- 121.425 – [b]13[/b]
31/5/11— 14.672' – [b]11[/b]

3 of my first 4 readings compared with Slim's (Mine in bold).

My consultant tells me that the measurement for CR (Complete Response) starts at 18… so we are both in the complete response zone – I have 3 more cycles to go when I return from holiday with the express idea of getting down as far as possible before stepping out into the unknown.

I don't understand how slim is showing increased myeloma in his bone marrow when the kappa light chain is the frontline measurement??? Unless there has been a sharp rise in the past 3 months of course… but surely they would have told you that. I'd be pressing for those missing numbers if I was you Eve. If the numbers have stayed the same or decreased then it doesn't make sense to me… and makes me question the validity of my readings… still.this is where a little knowledge becomes dangerous, so I'll wait to see my consultant before getting too nervous.

My results used to go to B'Ham but not for the past year or so… its all done in-house now, so I think that your hospital more than likely does not have the Freelight test facility.

Strange.

Dai.

[eveParticipant]

Hi Dai
I am not being stupid am I???
If Kappa light chains results are correct!!! bloods are correct!!! why is there 80% Myeloma in marrow!!!
If I new the answer!!!

After the last results in may we had a telephone call to say bence jones kappa light chains were down,but Slim did not ask how far,since then I have been waiting on results,when they dropped the bomb.80% in bone marrow!!!
Thought I might find someone who had the same results.

Sorry last thing I would do is make you nervous,just though you might have some answers for me,because in Slims case they are saying the only way the can see what is going on is biopsy of bone marrow,!!!
Go and enjoy your holiday,if I had realised what this did mean,I would not have explored the whole thing,for all we know readings could be wrong,will try to find out more results on Tuesday. Eve

[MinParticipant]

Got to have my two penorth as Peter has Kappa light chain too
This is getting complicated but I may be able to shed some light on the figures.
Only because I dug out some results form the time Peter was 1st diagnosed. and was awaiting his transplant and They are from Birmingham University too.
1column Kappa MG/L Lambda Kappa/Lambda Ratio.
……. 173.64 ………………… 5.66 …………………….. 30.678
Grab a calculator and devide 173.64 by 5.66 and thee result is 30.678
If I recollect correctly the 1st set of figures 173 was always the ones Peters consultant used to and still does quote
perhaps Eve you are being given the Ratio figures which look good on Paper but Im too thick to understand.
I used to ask for copies of the University of Birmingham letters but dont need to now as the FRH has its own SFL MACHINE/ANILISER
But let me tell you Peters last lot of figures were in the High 4thousands July and doubling each week so whatever your figures are Slim and Dai
You must be in rosy health by comparison to Peter!
I think there are many other factors to be taken into account and Perhaps Slims dreadful infection kicked his low numbers into touch. Or maybe he has become a non secretor! producing false blood tests.
That is why I was asking the BLOOD MAN craig to produce some results that mean something to the layman cos they are just too complex.
We need a Pie chart something visable in the form of a cake with slices followied by an idiots guide to blood results in myeloma.

[Author]

Posts