Hi all, almost 2 years post SCT and I have not yet taken circumin but would like to start now. Can I anyone tell me exactly the type they get and the website to save me looking at all different stuff etc to come to the same conclusion please?
Christine, I applaud your regime and whilst I used to juice etc I have gradually done nothing to assist my diet/Immune system.I have low vit D levels and whilst I have bought the tablets very rarely bother to take them but feel I should be a bit more proactive with my health once more. I never began with the circumin because someone I listened to told me it had little effect on certain chromosomal disorders but can’t find any research to support this now. Any pointers would be helpful as it’s my pre New Year resolution.
Thanks, Rebecca
Rebecca
Hi all, Jacquie my apologies for emitting my condolenses in my last post – I am truly sorry for your loss.
Karen, I had to go to another hospital who was prepared to risk my kidneys as I was turned down by the one that would be usual for me to attend. the risk of infection wiping out my kidneys was their main concern I think. Whilst my gut told me to do it (altho it is very comfortable living in denial) my deciding points and that of the hospital was – I had only had velcade/dex due to kidneys and that is not known for a long remission – it was thought I might have to go quickly onto other drugs for maintenance which would also take its toil on my kidneys. But..I have high risk cytogenics – novel drugs supposedly don’t touch it – so it was thought to be now or never decision as I was in good health but they felt on relapse I wouldn’t be as good. Now, If you have low cytogenics and have a different regime say CDT and achieve remission with that then length of remission is considered longer than my regime…But – we never know how we will react – I always say that whilst I have high risk cytogenics that is the “average” and may not affect me the same. I had a minimal residual disease of 0.3% and they wanted that eliminating because of the cytogenics – after SCT it was the same – so absolutely no change. I am 3 years since diagnosis and 2 years since SCT and am in normal range still – did the SCT deepen the response or would I be one of those who would have got 2 yrs from velcade only anyway? No-one knows, my consultant re SCT said he was sat there like a bookmaker and proceeded to say people they thought won’t do well do and those they think will do well don’t…. Such is the imponderable individuality of this disease. I am a very active person so permanent maintenance also did not appeal to me.
I would also caution against the debates re SCT/not SCT on the US site because they have individual packages of treatment and a wide array of drugs at their disposal- we do not and is a one fit suits all – or not as the case may be. I saw SCt as another treatment option to use in the very small sweetie jar. Karen, you are obviously jittery now so you must also take that into account but you have to weigh up your options as rationally as you can with whatever info you have re your case. I’m afraid it’s all a bit of a damned if you do and damned if you don’t scenario. I said in my previous post I would have been plagued by “what ifs” if I hadn’t done it but then I wasn’t expected to achieve a long remission without it. Why not phone the helpline and talk through your situation they have a wealth of knowledge that they can pass on. Finally (sorry I type as I think it so ramble somewhat) if you proceed you need to go in with a 100% positive attitude that it will work for you as goodness how I’d have felt if I didn’t have that to help me through the days. Good luck with it all – let us know how you get on x
hi Laura, I obviously do not know you/husband personally but I think perhaps he would have had the SCT even if risks were explained more fully. I know at that time you are carried through the whole process with big “hope” that you will come through it and that fuels the decision. I went against my husband in almost gung ho fashion because I felt “it” wouldn’t be me – totally unsupported but perhaps we are blinded in that terrible time. SCT is sold as the gold benchmark and encouraged and, for most, it is. I knew that I had to do it as it was my “chance” and I didn’t want to not do it and always be tormented by the “what ifs” if remission was short (which mine was predicted to be)and I wasn’t in as good condition to have it done then. God knows getting your head round it and going through treatment is hard enough but we do it because we have “hope” and I think if I had declined due to increased risks I would have spent the rest of my time waiting for it to come back bigger and harder and not enjoyed my respite. Having it and surviving it gives me that further “hope” that I think I really needed to cope. It is difficult to articulate how you feel at that time but SCT is, I feel, seen as a lifeline and if you are reasonably fit then you throw your chips on the table and hope they land in the red. Please don’t ever feel you should have deterred him and be plagued by different “what ifs” because you do what feels right at the time x
Hi Laura, so sorry to hear your news. I think SCT is considered as just a harsher treatment and with that greater risks. I wasn’t given the talk of what could go wrong and how the chemo can seriously damage heart and lungs (but knew about it) but, with kidney damage, I was told the chances of my dying was 20% – increased from the usual less than 10% risk. At 52 and with a young daughter I just blanked out all the risks and saw it as my only hope (my husband did not want me to take this risk). I had serious complications once home and felt close to death at one point (due to infection) but recovered well. I then looked back and wondered how I could have treated it so frivolously, not saying goodbyes, leaving letters etc but then I was feeling desperate for a longer future. I have heard many sad stories from those who go for a 2nd SCT – how the chemo has seriously damaged heart or lungs and negated the benefit of it all – but also heard about success stories too. I guess we should remember that melphalan is a derivative of mustard gas but we do what we feel we must to survive. I am so sorry to hear of your husbands experience/passing and thank you for posting the “other side” of the success stories – it is important to recognise the risks but when you are backed into a corner it is so very easy to dismiss them and think that it won’t be you.
Rebecca
Hi Andy, Great to hear you have survived! I echo Finn’s sentiments as I too and am sure loads of people were checking daily to hear of any snippet of your progress – you’re far too inspirational to lose – and a real stalwart of this forum. Take care
Rebecca
Hi Kerry, Sorry to hear about your predicament. Obviously your mum is not at a “crucial” stage re symptoms so think the time element you are experiencing is pretty normal. They may wait for the full body scan before bringing you in for a discussion so they have the full picture. Bloods normally take a week, I was diagnosed with kidney failure so was admitted to hospital and obviously the whole process was speeded up. I think when they start treatment will be dependant on your mums body scan as you do not mention any other problems she has been experiencing like fatigue or aneamia type symptoms? Treatment generally starts only when MM starts damaging the body. If bloods look suspect she will also have a bone marrow biopsy to confirm the diagnosis and level. Try not to worry, your results will come soon enough, and if it is MM it sounds like it has been caught early so that is a positive.
Kind regards,
Rebecca
Hi Scott, thanks for that I will add it to my collection. When I was first diagnosed and read everything I could about cancer/management/mind stuff etc I started collecting quotes and now have a little book full of them and whilst, in remission, the urge is not there to constantly refer to them I certainly did throughout all treatment and it really increased my positivity/feeling of strength – I still collect them and know I will use them again. Glad you are doing ok and really hope the allo will have don’t the trick for you.
Rebecca
Hi Jules, Obviously it depends how your husband is but after the transplant and say the first week if all goes well he should be fine on his own. I had mine nearly 2 years ago (at 52yrs)and my husband had to work – I became ill with one thing and another but he made me breakfast and I could potter during the day and he made the dinner. If I hadn’t been unlucky with infection and bad S&D when I came out I would have been fine, except initially for cooking. I found it easy to lay on the setter and have drinks fetched etc but I could, and did, do it for myself quite easily when he was at work. We are more robust than you think and it really helps the recovery process to be up and about the house and get on with things. As for visits because of my daughter and her needs and the long distance hospital Iwas in my husband visited every few days only- we kept in touch by phone a lot – much easier than the long travel and I felt better knowing he was at home with my daughter. When he did come I didn’t really want long visits as I felt pretty crap/nauseous all the time so don’t feel you have to be there all the time – you can Skype as well. I had mine over xmas so the fear of bringing in germs/bugs was quite tough so keeping visitors minimal is worth considering now we are starting the cough/cold season. My husband felt quite stressed over this when he did visit. What I would say to you is don’t underestimate the impact this time will have on you it can be quite harrowing watching a loved one go through this – might even be worse than having it done! I forgot it all very quickly as I recovered but he still seems traumatised by the whole episode ( but I was iller than I should have been). So don’t push yourself to the limit – have time off visits and take a breather – at some stages he will probably hardly notice due to tiredness and being wrapped up in his own little battle. It is really important you consider your own needs and make allowances for them as you need to be the strong now for a while and you can’t do that if you are run ragged. I can’t stress how important it is for you to make some time for yourself so you can be the strong cheery one – you will be the one holding it all together – so no pressure there! A long time after the SCt my husband – who had to work and, in fact, I wanted him to for some respite for him also – said he used to dread coming home on a night and almost drove slower! because I was so “not me” during this time. It’s a hard time and I would stress that when I cam home after about 2-3 days I would have been fine if I had not had a run of bad luck. You say your husband is having an SCT even though his cytogenics are poor? Well I have high risk cytogenics (and rubbish kidneys now which made SCT much riskier) and I was offered one because of the poor cytogenics as SCT should help deepen the response and hopefully give a much longer remission. I am in remission still, no maintenance drugs, 2 yrs at xmas. When dealing with poor cytogenics please remember you are not a statistic, not the “average” person, your MM is individual to your husband and poor cytogenics do not necessarily mean poor prognosis – it is still highly individual. Good luck with it all and get plenty of treats in before it all begins.
Kind regards, Rebecca
PS Only posting at this time of the night as had too much wine and food earlier and now paying the price for it!
Hi Georgie, I think the mixed opinions about SCt are generally if you are older and have other issues or mixed opinions from those having to go through it – which is really just the “is it worth it? what if it doesn’t work for me?” type scenario – more personal doubts than mixed opinions. The medical fraternity in the Uk have no real mixed opinion – it is our best hope of a longer drug free remission. If you are reading the US site then yes, there are mixed opinions, because they have a much larger armoury of drugs at their disposal and they try to tailor the drugs to the individual. We are not at that stage in the UK – we have a standard regime of treatments in a “one size fits all” sort of way. We are way behind the US and that is why SCt is not really an option. At 51 years, dependant on type of MM/aggressiveness he should also have a back up plan of an allo transplant for the future and may even be eligible for such in a trial but…for now SCt is the only really move forward. He has age and fitness on his side so recovery should be quick. Trust me, Sct sounds much scarier than it is.
Rebecca
Hi there, as you will appreciate the damage from MM varies from person to person but regards exercise for your father that is for discussion with the consultant only – who will have full body xray results etc. Obviously the Mm has nibbled the bones to have a broken rib so you need to know the extent elsewhere before any running resumes. At some stage your father will have a monthly bone strengthening infusion to make the bones stronger and once the MM is under control and you know the extent of damage then you can tailor future exercise to suit. I believe if you are able to exercise. and used to exercise, it is good for you but no doubt his chemo will make him feel fatigued and so perhaps strenuous exercise is not the best idea until in remission. I exercised throughout treatment – but had no bone damage – and as soon as able after the SCT (I am 53years) – to me it helped mentally.
Re. SCT your father is only 51yrs so there should be no reason why he should not pursue an SCT – it is the best option for a long, drug free, remission – which is what we tend to aim for. The drugs we have are not finite in numbers – and less so now with the withdrawal of some from the Cancer Drug Fund – so unless there is a medical reason to refuse an SCT it should not really be option. It is considered the Gold standard of care. Your father sound very fit and so recovery will be quick and whilst it is not a pleasant experience you are only in hospital for around 16 days – so perfectly doable.
Regards Rebecca
Hi, leaving work is generally classed as traumatic as a break-up, house move etc which is why the chances of a heart attack within the 1st 6 months I believe significantly increases. Personally, I feel it is easy to fill time/be more social in the so-called good weather months but winter, if you’re not careful, is much more isolating and too much thinking time. Ideally winter months are a time where short term contracts of work or different work projects (other than in those in the house on your own) are needed. I gave up my dream job a few years ago so have long since adjusted to just “doing a job” with no satisfaction but do get that from other avenues – running team fixtures etc. My father in law had a great job and retired early and then seemed to make his hobbies his work and whatever he did always seemed to end up as President of it. So as you feel your way through yet another transition you will/need to find ways to fulfil your needs but do try and make headway before the weather and dark nights curtails outside activities. Yet another new chapter….
Rebecca
Hi Stanley, so pleased to hear you have changed your life and given up work. It is a very brave decision to not stick to the “norm” and bury our heads. Funnily enough over the last year the amount of people I know of who have died just after normal retirement age – or died within a year of achieving their golden pension whilst sticking at a job they disliked but the with the lure of a long retirement is growing in number. Even my husband has re-evaluated and works less days now so he can enjoy doing the things he likes whilst he is fit and healthy. My aim is for us to have the last laugh in that we worked less than everyone else and had a longer, better retirement because of it. I still do 2 1/2 days a week but that gives me good down time and was fortunate that an earlier severance package kicked in my pension at 50 which tops up the part time hours. We are rich in time of not in money now! Enjoy.
Rebecca
Hi there, At 57years old is there a reason why SCT is not an option? it can be done with kidney problems and even whilst on dialysis? SCT is npw our best course for a longer remission pre relapse. The usual option at 1st relapse now will be either find a trial with a combination of drugs or thalidomide maintenance and then onto revlimid maintenance when that no longer works or is stopped due to side effects. The problem gets much worse now when revlimid stops working. We are always optimistic and generally say there are lots of things in the pipeline and drug developments etc but pom was a big one of those and we all know that other new drugs come with a similar price tag that NICE don’t like so…?
Rebecca
Scary times indeed, totally devastated – we do not have a great arsenal of drugs and this certainly helps deplete our cupboard somewhat. Pom is supposed to be better for kidneys with a higher dose than rev could give without damaging kidneys so I was hoping it would be there for me in the future. I read the US site a lot with tailored treatment and availability of lots of new drugs/developments with envy and resignation. I often wonder what’s the point in developing new drugs because we have to wait years for the trial process (remember some of us will be exempt for trial purposes) and then it is always too expensive for us…so back to older, harsher drugs… where’s the progress in – that?. At the end of the day this cancer does not have a “trendy” appeal for funding as it is “incurable” and does not effect the masses. I wonder how long the 2nd SCt will be available if it only gives an average of 50% remission time of the 1st – when will they start doing a cut off for that also? Perhaps we will have to be like the Americans where many up sticks and move to a good treatment area – Scotland is not so far away if your options are getting limited and remains unaffected for now. If MM is a game of snakes of ladders then we’ve certainly slid down helluva way. Totally gutted.
Rebecca
Hi Eve, It is so nice to hear from you again – I used to read your posts and digest your messages with interest. I think posters often don’t realise what a help and comfort they are to so many – it is only a small % I am sure who actually post but a large % who read and it is very unselfish to give your feelings and thoughts to cyber strangers – so thank you. I still adopt your “not worrying” phrase as my own now and at one time it was somewhat of a mantra of mine to get my head in gear. I am glad your message now (and as always) is that life is for the living – I will definitely impart that message on my way out. It is very brave of you to continue your travels on your own but then you know all about bravery and that it’s the only way to be/live. I hope you have lots of happy adventures and find real happiness again. Glad you are a becoming a strong swimmer!
Best wishes,
Rebecca
