This topic contains 99 replies, has 13 voices, and was last updated by 
dickb 4 years, 6 months ago.
They didn’t/don’t give me anything – they just knocked it off. I’m at a small hospital and sometimes think things are done differently at the larger ones. When I have treatment again I will ask about dapsone now. thanks
Evening, I too came out in a severe rash with allupurinol, I was taken off it immediately and not given a substitute, mind you I didn’t have any kidney problems. However thinking back at each check up they did look at kidney function, so presumably if there was a problem I would have been given an alternative.
Regards
Tony F
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
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
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
Hi Stanley, That’s great news – congratulations – with these results all bodes well for SCT. You must be well chuffed. Enjoy.
Rebecca
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
Well my understanding is the FISH analysis is done at the initial BMB so the results are there and you could ask for a print or ask your consultant to explain the results – and he would. As you know my consultant wasn’t particularly truthful about it but to be fair not many people seem to ask/know their cytogenics in the UK. Did your consultant evade a very specific question about it? MM is such a huge mind game and you need to gauge how important it is for you to know and what you could do, that would be helpful, with the information – you have had fantastic results and perhaps should take this as a positive that your MM is not aggressive. Remember cytogenics of a BMB sample is a snapshot of that particular fluid only and not necessarily representative of the whole body and cytogenics do change over time – perhaps that is why Drs don’t automatically tell us the results. Another reason why focus is placed elsewhere, I guess, is that we don’t receive individualised treatment based on cytogenics (yet) so how useful to us is the actual information? As you are on a trial you will be randomised for maintenance and you will then have to decide if you want to take maintenance – this would be the time to definitely know your cytogenic status and perhaps that is time enough. It is annoying that Drs don’t go out of their way to tell us if it is “normal” as a bit of good news, but they don’t, so by not telling us you cannot assume you it isn’t normal. Your treatment has worked incredibly well and perhaps that’s your greatest indicator. In fact, I would say don’t look for a stick to beat yourself with, listen to your Dr.
Rebecca
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
I’m at a very small hospital but it was done as standard so am surprised hospitals differ so much. Are you having the SCT at another hospital? as my understanding is it is done again on the 100 day BMB. I have not asked for my results of this (the SCt did not remove my MRD which remains at 0.3%) as I am not eligible for maintenance so it will only be useful to me on 1st relapse to see the route I go. I would clarify with him that it will be done after SCT. In reality nothing much will be gained knowng now except peace of mind – and I doubt if even good news really give us peace of mind.
Rebecca
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
Hi all,
Just had bloods from day 59 CTD M spike 0.9 down from 1.8, Kappa 119 down from 398 ratio 17. Had it confirmed last course cycle 4 to complete then SCT. Feeling incredibly well at end of course 3 including energy levels. I do consider myself very fortunate at present due response to the treatment.
Best wishes to all,
Stanley
Congratulations, looks like your last course could get you in complete remission – the best starting point for SCT. Think you’ll walk the SCT – now I’ve done it I’ve come to the conclusion that it’s treated as some really huge stage but I think it’s just another treatment – none are pleasant and some better than others but we all just grit our teeth and get through it. 6 months after SCT I find it a really distant memory as I have regained fitness and energy levels and it’s like I’ve never had it done – very strange. (would add tho’ it’s firmly imprinted on my family’s brain and not forgotten by them at all) I don’t want to belittle the process because it is tough, as are all of them, but I think when you are young you recover so quickly. So I guess I would say make the most of the time beforehand – all the family – cos I think it seems to be tougher on them to watch. One more hurdle….
Rebecca
Hi, Rebecca,
I’m have no fears over the SCT process as i treat it as a something that needs to happen so will just get on with it. I think i’m more concerned with climbing up the walls waiting for nuets to climb. I decided to leave my consultant alone on the questions and gave a very apathetic approach to the session with the operative word from me being whatever. I seem to have all the bases covered apart from the most important one we all face prognosis. When will the relapse happen. How long is a piece of string. It’s impossible for us all to plan ahead. He offered me support based on my response to the session to which i asked will they have the one answer i need. He said no to which i replied whats the point then. I do feel a sense of guilt with my greed for more especially when everyone on this site has to deal with the proverbial ticking time bomb.
Hope you are well,
Stanley
Hi Stanley, I am quite sure once your SCT is over and you are feeling well, living life normally, forgetting what the hospital looks like, that you will revert back to normal also and start planning long term – it is impossible not to. You will feel so well and feel as tho you have your life back why wouldn’t you? I found after sct to be unsettling with the 2 monthly visit but now my results have normalised and am in CR I have settled down. I guess it’s just getting used to a new “phase” and, as in every phase, repeatedly disciplining your mind to just not go there. Without sounding melodramatic I do feel that death sits on my shoulder, but like an old companion, and mostly silent and asleep now. I feel so well and am so busy now that I love planning ahead. Unlike you I don’t want to know when it will return as that way I can remain in denial and believe it will be 10 yrs. They say 90% of cancer patients live in denial and I don’t see what’s wrong with that it’s a happy, comfortable place! Even cytogenics can just give a “probable” because they react differently to each individual disease and I read of a guy who was very high risk but has remained in remission for 9 years- crazy eh? We must all be disciplined in mindfulness and not “going there”. I know a lady who has survived breast cancer for 10 years now but has worried so much over these years about it coming back, and still does now after 10 years, that she attributes her IBS to the worry etc (don’t know if this could be medically true but she has certainly made hard work of a wonderfully long remission!). I have never had counselling as I believe I use exercise to the same affect but would seriously worry they’d burst my denial bubble! It all takes time to get back to normal and plan normally but I guarantee you will naturally slip into it. My consultant has always tried to advise me to gauge myself/mm on how well I feel and not to worry about numbers – whilst I still ask for everything I do try and remember this as I feel so well it makes me very hopeful for the future.
Rebecca
The topic ‘Initial diagnosis’ is closed to new replies.
