[stanley-1960Participant]

I’m at the same hospital for SCT. I can see your thinking around peace of mind and will accept my progress is more important than actually knowing at this stage. It’s strange how i signed up for Myeloma 11 and would have had the results as part of the trial but when i decided not to have additional BMB’s as part of the process (6 instead of 4 normally done) the consultant decided not to fish array my sample. I believe at present it is not standard or required under NICE to have it routinely done.

Best regards,

Stanley

[stanley-1960Participant]

My fish array has not been done he said it was around cost and still unclear of the benefits. I gave him an uncomfortable time with certain questions including policy statements, karyotyping and current and future guidelines. The BCFH have just issued new guidelines stating every newly diagnosed MM patient should have fish array done as standard. He stated his mate had been instrumental in the document and he still stated he would rather buy essential drugs for the patients than carry out the test. I looked up the cost £892 average, cheapest £400 and the most expensive  £1500. I also asked him about the karyotyping  to see if any abnormalities were seen after they were paired up but he was very evasive. He asked me why was it so important to know to which i stated if i have poor cytogenics i can then decide the direction i would like to go. If i have good cytogenics i could possible plan my life a little based on the results.As you have said i believe fish array and individual treatment plans are the way forward as the disease is so varied  but this at the moment is not shared by my consultant.He even suggested if i was that bothered i could always pay for the test to be carried out privately. It seems he is under pressure to manage his departments budget and justify his spend.

Stanley

[stanley-1960Participant]

Hi Rebecca,

Hope you are well,i’m in a very positive place right now but was getting hung up at consultant appointment about lack of cytogenic information. He told me i need to focus elsewhere. Based on the response i would hazard a guess that my chromosomes are not high risk(or am i talking rubbish i normally do).

Best regards,

Stanley

[stanley-1960Participant]

Hi all,

Just had my M spike results after 32 days  original 19.9 down to 1.8. The trial nurse said this puts me at VGPR. The plasmacytoma seems to be rapidly reducing which if it disappears could push me into CR. I am amazed by the progress and am already ready for SCT after one and a half cycles but have to have the minimum 4.

Best regards to all,

Stanley

[stanley-1960Participant]

Hi, Ali,

Just got back from seeing my consultant today. Asked a load of questions about my plasmacytoma. He would not recommend radiotherapy at the same time as chemo. He was not concerned at present that it has been hanging off my rib for possibly up to 12 months.He said there would be no permanent degradation of the bone due to the prolonged duration. If the chemo does not remove it after SCT i will go on the 25 session 50GY route to finish it off. Hope the radiotherapy sorts mum out aligned with the Veclade.

Best regards,

Stanley

[stanley-1960Participant]

Hi Graeme,

It sounds like i am at the same stage as you diagnosed march on second cycle now CTD  raging hiccups week one. Luckily no problem since. I believe i have lesions all over the place skull,back, ribs,upper arm and shin but unlike yourself my mobility is good. I also have a plasmacytoma 4″x 2″x 2″ on the 5th rib. Speaking to my consultant he says none of mine need surgery and he is not concerned about the amount but more concerned about bringing the underlying myeloma under control. Have you been told what the plan is for your pelvis.

Best wishes,

Stanley

[stanley-1960Participant]

Hi all,

Just had my results from bloods 32 days into CTD.

Kappa 398 down from 1164 lambda up to 15 ratio down to 26 from 120.

From the original figure of Kappa 4120 and a ratio of 527 that is a 90% reduction. Can anyone comment on these figures based on CTD 32 days in.

Best wishes to all

Stanley

[stanley-1960Participant]

Keith,

Normal range:

White blood cells  4 to 11

Platlets               150 to 440

neutrophils           2 to 7.5

(Oxford handbook of clinical medicine)

Looking good, really pleased your on the mend.

Best regards,

Stanley

[stanley-1960Participant]

All,

Interesting.

Revlimid £250 for 25mg tablet

NMP        £11.86p for 250ml bottle

I believe this could be on in the eye for the major drug companies based on the very promising Australian trial.

Regards,

Stanley

[stanley-1960Participant]

Hi Lizzy,

All the very best for your SCT , the positive news on the PP result should spur you on Aligned with the goal of remission after the melphalan.I am on cycle 2 of 4 CTD and the SCT for me can’t come quick enough. Maybe i’m a bit of a strange one.

Best regards,

Stanley

[stanley-1960Participant]

Hi Helen,

I am very sorry to here the news of your setback and hope that a new regime of treatment is organised as soon as possible. Reading your posts gives an insight to the frustrations and emotional turmoil that all newly diagnosed  myeloma sufferers will surely face in the future. The title roller coaster is the most accurate way of explaining the myeloma journey for us all.I do hope you will soon be heading for the top of the next peak very soon. My initial diagnosis was quite possibly the worst moment of my life along with the first month post surgery. I am slowly realising  with posts like yours i have further emotional hurdles that need to be tackled. I am currently on the top of the big dipper cycle 1 CTD completed today with a few small up and downs on the way. But by the laws of gravity what goes up must come down,i just hope i have the strength to get through the lows which will surely come. This site and the people on it are an excellent source of information and inspiration to newly diagnosed myeloma sufferers like myself. The lonely road you mention seems to disappear on this site as we are all on that same road together and i believe empathise with each others situations based on personal circumstances.

All the very best for the future,

Stanley

[stanley-1960Participant]

Hi Tony,

I believe my consultant said it was for the effects of gout. My kidney results at initial diagnosis was 62% which puts me as stage 2 of 6 not too bad for myeloma. It does also help kidney function and numerous other ailments. The new drug Dapsone is an antibiotic used in leprosy and to prevent fungal pneumonia(nowt like researching to put the mind at rest lol). What i don’t understand is the 2 different drugs have very little in common. I will ask the registrar to shed some light on the matter.

Best regards,

Stanley

[stanley-1960Participant]

Hi Rebecca,

Hope you are well. I was wondering what they gave you as a substitute for the alluprenol. I have been given dapsone but have to wait for enzyme results from the hospital before i can start the course. Other than that rash has completely gone as quick as it appeared 24 hours.I can still feel that glass getting nearer maybe tomorrow(no more incidents permitting).

Best regards,

Stanley

[stanley-1960Participant]

All,

I said there would be setbacks but i thought it would last more than a day. Hospitalised due to major allergic reaction to allopurinol and co trimoxazole. Funny i’d been taking them for over 2 weeks then out of the blue whole torso and arms covered with massive raised wheals. Reading many others experiences on the site i should have been prepared for the unexpected. I stand a little more apprehensive for the coming weeks and months.

Best wishes to all,

Stanley

[stanley-1960Participant]

Rebecca,

I’m thinking of starting my own Resveratrol trial on my own lol,not sure how much you need to drink to kill enough Myeloma cells though.

Regards,

Stanley

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