[brochoParticipant]

Hi Dai thankyou so much for representing us, you are a star! Sorry I couldnt add to suggestions my little brain is not working lately!! love Bridget x

[eveParticipant]

Hi David
I know you are in remission,was it the same through treatment!!
I agree completely with you, in terms of getting results,and agree,you can almost see the reactions on the professionals faces(patients who think they know best).
I feel they have failed to keep up with the times,I do accept many people do not want to know!!! fair enough but why should people who want to know have to conform!!
We might seem quite ignorant,when the Myeloma World hits our lives,but a year down the line,with modern technology and the desperate need to find answers,we often realise that mistakes have been made on the way.
My mantra his test his body his life,but at the end my husband.

I do feel you have to start at the beginning,because it starts with blood and urine test at the GP,how many people are getting treated for cracked vertebrae and Osteopena with a general blood test which will not show some MM.So patient is treated with massive Calcium and pain killers,taking months to be diagnosed,its all about money for test.This can be solved by having a standard test,(Not if this test shows nothing come back next month and we will do another test and work are way down the list)it,s often to late,and the damage to the bones ,kidneys is present.

I have said to Dai to use what info seems help full,this is just my view as a carer,and I do understand lots of people have different experience and out look to myself.Love Eve

[PerkymiteParticipant]

Hi Eve, Yes I take your points and agree with them.

Now you mention it when I was first diagnosed, JUL 2009, I had a chart given to me with the blood readings on and I would ask to have it filled in each appointment. If I remember rightly it always seemed a lot of trouble, for the Consultant that is, at the time and I think I gave up in the end I certainly stopped using it and forgot about it.:-/

kindest regards – vasbyte

David

[tomParticipant]

Oh Eve My you know how to make a man blush. "Tom walks away blushing":-) well I would if I knew how to Ha ha.
Yes Eve it has worked for me but I used to ask Q when I was on treatment but as am in Remission I have nothing to ask:-D and My Dr and I are very happy with that 😎

As most of you know I "worry about not worrying" he he Na my Dr's Happy am Happy (well he aint happy with my weight though Ha ha)

And Eve I am off to work in the morning to tell my Gaffer "I am An Asset" ha ha

Love and Hugs from one Blushing "Onwards and Upwards Tom xxxx

[BADGERParticipant]

HI Eve

thanks for asking about me I have not been too well last couple of weeks we both picked up food poioning I was so so ill it was affecting my kidneys it all happened just before info day so we couldnt go shame I was really looking forward to it my support group leader is hoping to get me a CD of the day if she does when I have finished with it would you like me to send you a copy so you can see what went on. went to the consultant on monday but my bloods were up the wall due to the food piosoning so I am having to have another lot done at the end of the week feeling a lot
better now thank the lord.
How is Slim feeling hope he is well at the moment and responding to treatment. I love your little dog what sort is she

Keeep well Love Jo xx

[BADGERParticipant]

Oh Dear Tom
you are such a cheery person I would like you to be next to me if things go wrong I am sure we would end up laughing keep us cheered up Tom
big ((hugs))
Love Jo x

[tomParticipant]

Hi Jo
Sorry you have been poorly 🙁 BUT you also know how to make a young man "Blush" or is it cos my Commie is too close to the heater 🙂 and as for the Next to you am sure you wont need me nor anyone else for many a year to come 😀 al keep on keeping you all cheered up if you keep on keeping fit 🙂 love and Bigger Hugs ((((())))

Tom the "Blushing Onwards and Upwards" Chap xxxx;-)

[SueMParticipant]

Hi Dai

Thanks for doing this for us 🙂

I don't know if these are relevant but these are a few of my questions

1/ when and how can we get fish genetic testing from bmb more universally done ,rather than if you are at a forward thinking hospital ie the marsden?
(we are so far behind america who are already making treatment plans more individual and hopefully better ie remissions by using this data)

2/and others may be able to answer this here 🙂
Do all of you have to have the unit receptionists see if your blood results are ready and ok for that days treatment? its now taking on average 2 hours to get these back at my hospital and the pharmacy will not make up velcade till they get them
apparently the haemo lab puts the results on a different system to the one pharmacy and unit can see then it has to be transferred to other and doesnt falg up anywhere that its ready?
(ps can't go day before for them due to distance)

3/ Why do we not perform more mris ? i know cost of course but I think we need to look at the whole picture ,see if placmacytomas etc have improved gone after radiotherapy or tratment and also review the whole picture pre transplant I'm not totally pro america but this is also done often then.Each of the drugs has a different avtion and whilst bmb may look great at 5% and under after treatment I believe consolidation may be need pre transplant and therefore we get improved remission length post transplant possibly?

4/ why are all patients almost rushed to early transplant when studies are now showing that delayed is likely as effective? I value my near year of remission pre transplant the near normality was heaven and i believe it would have ben longer if the granulocyte for harvesting didnt appear to stir up what velcade had made dormant?

5/ re teams i would value someone at the hospital to help support me with consultant decisions ,sadly my lovely consultant retired in June ,just before my restarting treatment and my new consultant chosen by me is lovely but uniformed about me and seems a one size fits all haematologist and review at end of treatment,I had had same pp lvl since end of august and requested tryiong higher velcade as im on mid dose ,had 2 weeks of 1.3 and became unfunctioning but pp dropped finlly by 4 🙂 so requested trying again spreading dose and he was unimpressed said he wouldnt change dose again hmm ……

Can you tell its dex day haha

hugs all
Sue

[HelenParticipant]

Hi all
just a little bit of info about when I asked the question about blood results coming to the patient as well as the doc. I was informed that the results belong to the requesting doctor and their permission is needed for the patient to have them. This means that if you have an infection and go to your GP ( as I did on Monday) the bloods done the previous week in the hosp were unavailable for the GP as the system was down, had I had a copy myself I'd have been able to produce it.
Helen

[eveParticipant]

Hi Sue
just to tell you about point 2 of your questions?
Slim has Velcade twice a week dose has always been 2.3

We had appointments at 9 for bloods and 1 o clock for Velcade.
leaving at 8 in morning bloods taken then stayed in city,went back for Velcade by 3 o clock often no velcade getting treatment at 4.30,if we are lucky home by 6.We watched staff come to work and leave again in evening!!!!

Why why can they not organise them selves,in stead we organised our selves'we now go in for bloods the day before beginning of next cycle,this means Velcade and tablets can be done 24 hrs before.the rest of the time we go for bloods at 9,then go home and travel back for 3 or 4 oclock,round trip of 60 miles and a lot of petrol,but Slim is able to rest.

The problem seems to be that the departments do not co-operate and work as a team,so the patient suffers and the nurses waste time phoning to see why drugs are not ready for patients appointment.very inadequate.

I do not know the distance you travel or how long after bloods you wait for treatment,our longest wait before we organised our selves was arrived 9 for bloods,and left just before 6 in the evening,plus add on 1 hour each way for travelling and parking.

After turning up on date requested for BMB on Monday,told mistake they do not do them on Monday,turned up Tuesday had BMB,but in the conversation about appointments to see consultant ,was told we should have a person organizing us,told her we would not hold our breath waiting. we do find it laughable.

As to MRI purely money

They have a dictated regime to follow with chemo,and I am sure many consultants would like to vary and try different chemo to suit how advanced the mm is,but often there hands are tied.cdt is 1 line,Velcade is 2nd line.
I would agree with you,we have to give the consultants more power to choose which drugs would be best for different MM or drugs that could be more effective to people with advanced MM,some have nothing to loose.

This is why I am all for trials although on myeloma x1 trials my husband was randomised for CTD.

I hope this gives you some insight .Eve

[mhnevillParticipant]

Hi Dai

Like everyone else I am grateful you have taken this on.

I agree that getting results is very important to how in control we feel. Yesterday I got them from a nurse on s napkin!! She took them off the computer because I asked her. I nromally have to wait two weeks to get my para protein results and this is after my Consultation. I will give my Consultant her due, she does write and give them to me, but I agree it wuld be better to have them at the time of the Consultation.

Hope you are feeling better yourself.

All best wishes.

Mavis

[SueMParticipant]

Dear Eve

Thanks for your response that is appauling .

When I had my first treatment ,lasted 12 days on cdt..then had 7 cycles of Velcade , cyclophosphamide,dex ,I chose this i was offered VAD and pushed for VCD/CYBOR-D as it had shown to be more effective than VAD and i was in a mess from CDT and VCD and more tolerable than VAD ,my old consultant did listen and discuss,knew what he could offer etc.

I had big delays waiting for bloods and treatment but nothing in comparison to yours,Im amazed ,I just want the departments communicating which shouldnt be too difficult to achieve and would help all patients on chemo not just us myelomics.

I was a ward sister so I understand hospitals in a way from both sides if you know what I mean. So I contacted the chemo part of our pharmacy and asked why the delays for my Velcade ,he explained if he knew my regular time slot he would now make my Velcade at 9am half hour after machine turned on and primed they can see on computer our slots in the unit from there computer,he also said it was random when the box was collected and would call the unit when my VELCADE is ready each time this improved that part a lot but sadly now procedures changed so they won't make it up till blood results 🙁

I am going to contact the IT dept to see if its possible to flag when results are ready?
My lovely old consultant is now coming in doing IT work so I asked if his lovely secretary can ask him to look into this too.

I think we need to gently enquire what is causing the delays ,sometimes its no seats,nurses at lunch 50 % go together which means only 3 left which slows treatments down in my unit.

I always ask the receptionist to look see if my bloods are ready or think i would wait many more hours it definatly needs improvement and wouldnt be too difficult or costly to improve and would reduce our fatigue and quality of life while on treatment.

my dose of Velcade was 1.omg/m2 thats based on 1mg per patient wait and =2.0mg with my 2 stone weight gain since myeloma ,on the 1.3mg/m2 i get 2.6 mg vel

There used to be 3 dose options availiable the normal 1.3 mg/m2,the middle 1.0mg/m2 ( found in studies to cause less neuropathy and be pretty effective ) and the 0.75mg/m2 that didnt help much these were the twice weekly doses

Now lots are doing 5 week cycles of weekly and they studied 1.3mg/m2 but are now using 1.5mg/m2 and 1.8 mg m2 on weekly.

My consultant was just playing lets wait and see and change no dose and refused i go back to twice weekly which i tolerated fine and did ok in 2010,I had been seeing the pp not drop much and knew it was unlikely i would even get to the 15 paraprotein pre transplant,he finally agreed last cycle to up the dose ,and i hoped i could tolerate it but i didnt having it 2 consecutive weeks but it appeared to have done the job , my consultant did change this next cycle to 1.3,1.0,1.0,1.3 then week off which is what i asked to try as felt it was best chance i managed to function ,(I have a 10 year old daughter and am single mum)
What concerned me was his attitude maybe hes not used to patients taking part and may have had a bad day? ………. but i felt like a naughty child that made life difficult changing the dose 2 cycles on trot to enable a treatment that stopped the plateau and that i could tolerate.

i even apologised for being so drug sensitive… and when he said i had to accept treatment had side affects I sais I was accping and coping whith breathlessness,fatigue +++ pain requiring MST,unable to go out much at all on the 1.0mg but couldnt manage the unable to function at all after 2 consecutive weeks of 1.3 so was just trying to make it work and wouldnt ask to change it every cycle … and that my father had seen the state i was in unable to make a cup of tea even as my cognition went appauling and my daughter spent weekend at my parents I think my consultant understood I just hated the presumption.

wow ive waffled on sorry ,think i just needed to share it sorry and that it wasnt a case he could change it or was a drug change

it was the drug sheet had so much red writing from the change last month I think…. but this is my life I think getting a few years life is more important than red writing..

thanks again eve

best wishes
Sue

[eveParticipant]

hi Sue
You want to waffle go ahead,it does you good sometimes and helps when things go wrong,this site makes you realise how so many hospitals are different concerning treatment.
Slim is on Myeloma X1 trials ,so we do have to stick to a certain treatment,but who every devised how it was to be taken never considered the patient.
EG:VELCADE DAY 1
Velcade given at 3 oclock some time tablets do not come up till 4 o clock.
He has to take 10 cyclophosmahide have nothing to eat for 3 hrs before hand and not take hid dex before the one hour after.
VELCADE 4 o clock
CYCLOPHSMAHIDE taken staight away usually around 4 or 5
DEX i hr later at 6 o clock
and guess what he walks the floor all night!!!!!!
This is day one of treatment and cannot be changed.

Now tell me what mad scientist devised that!!!!!!

So now I have had my Waffle and feel better for it. Eve

[ellenModerator]

Dear Eve, I hope I can clarify things for you but as you know I cannot comment on individual cases.

In myeloma patients the percentage of plasma (myeloma) cells within the bone marrow can range from between 10% to 100% and is measured by a bone marrow biopsy. The percentage of plasma cells in a healthy individual is less than 5% and for MGUS patients between 5-10%.

Myeloma is often called multiple myeloma because it can affect more than one bone in the body. The spread of myeloma within the bone marrow of an affected bone is not uniform and can often occur in clumps or pockets. This can sometimes make biopsy results inaccurate as the sample may not be taken from an area containing the myeloma cells so other measurements are taken in conjunction.

Usually, myeloma is monitored by measuring the abnormal protein or paraprotein that is produced by the myeloma cells. However, for some patients who have what is known as ?non-secretory myeloma? this can not be measured. True non-secretors don?t even produce the light chain part of the paraprotein structure so the serum free light chain test is also not useful. For these patients, doctors will be guided more by the results of the other tests and scans that are used to measure the extent of the myeloma and response to treatment:

? Blood tests to measure the levels of red cells, white cells, platelets and various proteins
? MRI or PET scans which provide much more detail than X-rays
? Regular bone marrow biopsies.

PET scans are not as widely available as MRI scans but can be a very useful way of visualising the myeloma in the body. Normally a substance is injected into the patient which concentrates in the myeloma cells. Therefore areas of myeloma cells can be detected and located as ?hot spots? by scanning the whole body. If a patient has responded well to treatment, then these ?hot spots? should reduce or disappear.

Generally, the patient will know whether their treatment has worked as the symptoms they had before treatment will have resolved and they will feel better in themselves. However, this of course can sometimes be masked by the side-effects of treatment.

Ellen

[eveParticipant]

Thank you Ellen
For taking the time to give me a general explanation,I do realise you can not comment on an individual case,what you said I found very helpful,but brought a few more questions to mind.

The hospital my husband attends does have a PET scan also MRI,if some one had MRI scan on his spinal column only.How would it compare to having a PET scan would this have given a better indication of MM in the whole body,?

Regular BMB :If BMB cannot be considered to be an exact reading,and a patient is considered to be non- secretory and bloods have remained roughly the same through out treatment,what test can be done and how often should they be done,especially if a higher measurement of mm has been found in bones after the first round of treatment.?

I hope you can answer these questions.hypothetically of course.Eve

[Author]

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