[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

[stanley-1960Participant]

Rebecca,

I am very pleased along with the improvement generally after the first week severe back and chest pain. My consultant offered my liquid morphine but i decided not to take him up on it. My tumour also seems to be visibly shrinking. I’m sure there will be setbacks but at the moment  all is good. I may sneak a glass of red at the weekend or two as suggested.

Best regards,

Stanley

[stanley-1960Participant]

Hi all,

Just had my first results with bloods taken at 8 days on CTD.

kappa 4120 down to 1164  Lambda 7.81 up to 9.70 ratio 527.53 down to 120.

On the face of it very promising start.

Best wishes to all,

Stanley

[stanley-1960Participant]

Hi Keith,

My weight loss over the past 2 months has been just over 4kg but i put that down to the healthiest i have ever eaten in my life. Loads of veg,fruit,white meat and fish. Like yourself i still have a bit to play with to get down to what the experts say is my ideal weight .

Rebecca,

As i said to Keith i am getting towards a stone but put that down to a life changing diet and not putting processed rubbish in my body due to the fast pace of work and life(mostly work). As for the dex i am hungry when i’m not on it through the cycle it seems to be constant.

Best regards to you both,

Stanley

[Author]

Posts