Hi Mervin, Sorry to hear you are relapsing. As I am sure you know by now Mm is very individual and individually unpredictable so stats may or may not be relevant to you and yours. I have always been told the 1st Sct will give you the longest sct remission period and you can expect half of that again with the second and that is why those of less than a year remission are not normally offered a second. However I have heard of someone who got 4 years from his first and 8 from the second! I am now 3.5 yrs post 1st sct with high risk myeloma so I am pleased that whilst there are all sorts of stats etc out there it doesn’t mean you will follow them! I hope you 2nd sct/chemo regimen puts it firmly back in the box for many a year/ever – ask the same question on the myeloma beacon US site and I am sure you will find many who buck the trend on the 2nd. Best of luck
Rebecca
Hi – he is having an allo transplant then. If you look through the under 50’s section over quite a time period you may find useful insights into the Allo experience/dilemmas faced. I believe if you speak to the helpline they can put you in touch with someone who has gone through the experience – you may like to ask some questions on the under 50’s section as it is this group that has walked the talk. If you search through the American myeloma beacon forum you will find lots of interesting perspectives/experiences of undergoing an allo transplant. Best of luck
Rebecca
Ok and he has myeloma also. Is the transplant an SCT i.e. They will harvest and collect his own stem cells and transplant them back in after the high dose therapy or is it an allo transplant i.e. They are using donor stem cells from a close relative or a stranger where there is a good match – at 35 he would be eligible for an allo I would presume. What status is his myeloma – is it high risk or standard risk do you know? As this may influence the options he is given. When you go forward for any transplant you have to meet the criteria for heart, lung, kidney health. I had kidney problems which make me ineligible for an allo transplant but I opted for an SCT with a 20% estimate risk if death 1 in 5 – needless to say all went well for me and am over 3years in remission to date.
Rebecca
Hi, Are you referring to an allo transplant? a full allo or a tandem transplant (of SCT followed by a mini Allo) or are there health complications that make a stem cell transplant riskier? They are all different so perhaps if you give a bit more background info re age/health/ mm status etc someone may have been in a similar position to share their experience. I would also suggest you phone the helpline and chat to one of the wonderful specialists. Good luck.
Rebecca
Hi Lillian, Mm is a very individual disease and no 2 people will react the same. If Vdt hasn’t hit the spot I would think of it as just a different type of drug will suit better for his Mm. I believe dt pace is abit like sending in the heavy artillery so hopefully you will see great improvement and it will do the job for you both and give a long remission x
Hi Stanley, Yes I am well until I hear otherwise – next appointment 1st Feb. I am almost forgetting my exact months of remission but now it’s over 3 years do feel a tad tetchy about how much longer I will have so have decided to really go for it this year in doing new things etc. Perhaps in doing so it may play a small part in keeping at bay – who knows – but I like to go with that theory of wellbeing!
Hi Stanley, glad to hear everything appears reassuringly okish – well at least not sinister. MM really is a very interesting study if it wasn’t so pertinent and close to home! It is so complex I fear I would not do well in an exam but hey I am living well with it and that’s suffice! Wow 25 months..time flies scarily so but it’s all a celebration in remission – long may it continue.
Stay well
Rebecca
HI Richard, this all sounds very encouraging and positive so well done to you. It does get easier as time goes on although when diagnosed it seems impossible to imagine. I am glad you are trying new things, the more the merrier, and trust me you will takes bits from each and they will help you through the inevitable down times. As an example of new experiences and constantly moving on I have just tried paragliding today as I believe I am no longer/ will not be ever be/constrained by fear now! The more I do the more positive I become – it is infectious (in case you are wondering I have not passed it by my consultant but am sure he would say if you feel you can do it carry on👍🏻) Life is 10% what happens to you and 90% how you react to it. I think you will do well Richard as you have quickly grasped the way forward. I hope your wife joined you at yoga and is contemplating her own coping mechanisms/escapism.
Best wishes
Rebecca
Hi Pepz, This is one hell of a shock diagnosis and a very complicated cancer – learn all you can if it helps you and so you can pass good snippets etc but do not bombard him with info but be ready if he asks. This is very important as imparting knowledge needs to be at a pace/when your father wants it – so make sure everyone respects this. However, stage 3 will sound bad – it isn’t it is a marker of the extent of damage only – the important thing is how he responds to treatment stage 3 that is easy to treat may trump stage 1 that is hard to treat. A key message is to emphasise how individual the disease is. Incurable cancer – another scary message – go look on the beacon and search for long term survivors topic – give him snippets of their stories so he knows there are people living 20 years plus with it. Give him snippets of looking through the forum and the pattern is treatment then drug free remission until it comes back then another line of treatment. Reinforce we all say this is a “Marathon not a sprint” so no panic. As with all illnesses/cancer I would personally like to emphasise that all crying and emotional outbursts is not helpful – do that behind closed doors not in front of him. Display positivity, calm and some knowledge on it all (and reassurance from the forums)so he starts to think it will be ok and you can get through this – which he will. There are so many people living well with this – including me – that’s what he needs to hear. He is very lucky that you are so quickly “on this” and you can become his knowledge source…as and when he asks. Best wishes
Rebecca
Hi susie, yes I am on health unlocked for kidney issues – don’t use it much and doesn’t have the same feel as this forum – shame if that is the case as i feel it will “dwindle” considerably in participation. Oh well, guess we’re adept at coping with change – albeit reluctantly! Happy New Year x
Hi Andy, Great idea. I would also like to throw in the mix that I would like to be able to “follow” members so I am alerted to new posts so I don’t miss their progress and also want to support. Probably a big ask but it would be nice.
Hi Richard, I should have said in my post I am now just over 4 yrs since diagnosis. Regards work I did 2 x 12 hr night shifts and then 6 days off. I never went back to nights as I could not afford to knowingly drag my body down and changed hrs to days and a different shift pattern. I had 6 months off since diagnosed in hospital because :- kidneys very dodgy for long time, night work, total shock and didn’t want to go to work and just wanted to focus on getting fit, strong n healthy to fight this. My dr thought I should go back to work as a distraction but I needed a long time to get my hard round it n wanted to try and be physically strong. I only had velcade n Dec due to low kidney function and I believe thalidomide is a nasty little drug to add. I got increasingly tired as cycles went on but because I wasn’t working I could play tennis, rest leisurely, go for walk..I admit to exercising as much as I could as a coping mechanism and I like it. I never got any infections over winter which I attribute to not working – as a teacher you may be susceptible to a germs environment? I know others who just carried on working throughout but then i wonder if they really focus then on how to tackle this well? It all depends on how much you love your job/stress levels. You are likely to experience chemo brain which I think is akin to adding 30+ yrs on your brain – I was quite foggy at times but then who knows how much internal stress is to blame for general slowness also – certainly not as sharp and alert. When I went back to work which was nearing end phase of first treatment it was hard getting up early but I was ready for the distraction and mentally good (I work taking emergency calls do I need to be alert) and enjoyed it but it was draining. As you are logging your walks it may also be useful to log your moods through treatment cycle also. This will enable you to plan life well around the ups/downs – when I was on Dex it was like being on speed I would talk fast, have 3 conversations st once and never listen to any answers! Amusing at first but then I realised it was better not to plan social meet ups then but use my energy on jobs round the house etc. As time went on and I felt down/weepy after Dex wore off I used to plan little treats etc. Better to be in synch with the treatment toils. I have been told men are much more grumpy/angrier on Dec than women due to testerone levels and if this is the case then ensure your wife has done me time catching up with friends or doing her own thing – it is useful to both of you to log/recognise the cycles. With regards holding back on the gym unless you are neutropenic it should be ok and if it’s something you enjoy I would just do it. All consultants say different things and can be over cautious – the only thing I stopped using was the steam room. I did have a bp machine at home and developed atrial fibrillation and rapid heart beat for 2 days from taking Dex – I did not play tennis or run on these days and everything resumed ok again after 48 hrs – so be aware of your body changes so you can adapt your routines.
Rebecca
Hi Richard, I was 50 when diagnosed at a critical stage of kidney failure – shock diagnosis etc – had 8 cycles of velcade/dex followed by SCT at xmas just over a year since diagnosis and currently still in remission and drug free. Kidneys took a big hit gfr now 32 but do not hinder my life tho will be problematic with further treatments and infections. We are all different but I will briefly give you my take/experience of it all. Firstly, with a shock diagnosis that took a long time to come to terms with we chose not to tell others – my daughter was 14, I carried on as normal tho everyone knew I had a “kidney” issue which explained away treatment also. We are all different but we needed time to come to terms with it and get to grips with it without the intrusion and questioning of others. I told my parents and one sibling just before harvest/SCT – by this time I was confident, accepting of it, well versed and was able to be there for my aging parents who were broken by the news and rightly, or wrongly, needed me to constantly show them it would be ok (this was draining). From a year of privacy, which meant we tried to lock MM away in a cupboard as much as possible and carry on as normal, came the draining part of “how are you” anxiousness of others , constant reminder of it and finally a very small circle of people who half I am no longer in touch with as I felt they could not look at me without pity in their eyes and a couple which I am very close to now. Highs and lows. I am aways mindful to say you must choose when you tell people as once it’s out of the bag it can never go back in. As I hid this MM away it helped me carry on as normal and throughout treatment I carried on with the gym, swimming (different consultants advise different things – I think mine is the “do whatever makes you happy” type, playing tennis etc. The only time I stopped playing tennis was when the hickman line was in pre SCT and I was back to fitness 3 months after it. The more tired you get I advise you to take a brisk walk, do something you enjoy, it will make you less tired and increase your energy levels (well until you get to bed and then I was dead to the world – a happy escape). Your body will adjust to your cycles of treatment and I found side effects more extreme in the first month or so and then ok. This battle is won or lost in the mind and, as you have consultants advising of treatments, it is not essential at this stage to learn everything you can about MM – what is essential is to decide now how you choose to live your life from here on in. The only thing you have control of are your emotions – cancer, like bad hair, won’t make it a bad day..only you can do that by how you choose to respond to the day ahead. I always try to remind myself “Be miserable or motivate yourself …it’s always your choice”. Do not panic now as you are in this for the long haul so the area to concentrate on is your mind – this is where the battle is really won or lost. From the moment you got your diagnosis life will never be the same, not necessarily worse, just different, so don’t try to get over the treatment and resume life as “normal” because now you need to create a new normal – hopefully a better normal where you live for today, live in the present and do the things that you want to do where possible. I have tried yoga as a calming influence, I love mindfulness (tho am rather lax with it now in remission) and this really got me through the hard times, along with exercise. Exercise kept me sane and helped me re-energise, boost my mood, feel normal…also helped me punish my body for letting me down! Think out of the box and now is the time to think what you have both always wanted to do but was saving it for later…new hobbies, new experiences, new environments – all this will help you focus on the positives. “Life is not a matter of holding good cards, but of playing poor cards well”..oh, one of my coping mechanisms was collecting motivational quotes! which became my mantra at various points and I still carry my little note book round with me but refer to it much less so now. I also bought lots of positive thinking type cancer books..and I took bits from each one but unfortunately the names/authors escape me now as I used to secretly read them and then throw them away lest they be discovered. Start as you mean to go on and always remember “You can’t control what happens to you, but you can control what happens in you” – the mind is like a muscle that needs flexing to create good discipline and you sound as though you are already formulating your life plan (both of you). This never goes away but you will learn to live with it like you would a troublesome old friend – I say friend because Mm is part of me and my DNA – as much as I don’t want that to be the case I do accept it for what it is. MM is a real mind **** but is doable as you will no doubt find out as time goes on and on..
Best wishes,
Rebecca
Oh dear, that all just sounds like cutting corners and saving money at a time when you don’t need it. Well hang on to the fact that if it gets too “disruptive” you’ll be on a side ward. The only thing with sharing a ward is everyone does tend to hog the shower/toilet (women do anyway) so I wouldn’t/couldn’t wait to use it. Perhaps they are giving you worse case scenario and if you miss the bathroom due to other people just kick off – or better still get family to kick off on your behalf. On an open ward at this time of the year even if patients are well there’s a good chance their visitors will have a cough n sniffle. Any sign of germs enlist family to shout loudly – you shouldn’t have to but they are putting you in a precarious position. At Leeds in isolation – visitors etc were gowned n booted before they entered as were staff. How can there be such a big difference in protocol? I really don’t understand it. I know in the US they are often day patients but they go off to a hotel room/flat which is free from a flow of visitors etc. Anyway, they would not knowingly endanger your health so perhaps this is the way forward and whilst it is not the best scenario for us (and the others on the ward) it is just something we will all have to endure but…again….a short period of time in the great scheme of things….you’ll probably be out in 2 weeks…focus on that. Hang on in there and look to 2017.
Rebecca
Hi Dean, sorry you’re not in yet – I had the same problem at Leeds – I had to have the chest port in before I was on the official “ready” list and had to phone up each day for a bed. This started early October – so could not go the gym or play tennis due to chest portal and actually went in mid December so was in at Xmas. I had not been on treatment since the July and in the end my consultant phoned Leeds and kicked off at the wait and lo behold that night I had a call at 10pm to say a bed was free. I was also advised by Leeds nurse to call every morning for a bed so they know you are ready and wanting to go in?!? which I didn’t really as every time I called they said they had me on the list and I would get a call when a bed was free. My nerves were in shreds waiting every day knowing xmas was looming etc. Rightly or wrongly I would say shouting the loudest and also getting your consultant to call them complaining might make all the difference. The other hospital I could have chosen actually gave you a set date and they adhered to it – but it was smaller and didn’t do as many as Leeds (Leeds is like a conveyor belt system and I guess very efficient with resources). At Leeds I was told lymphoma patients took priority as they were more ill – so that makes you feel a bit more humble as well. I have heard some on open wards for the first few days only – wouldn’t want to be in a shared ward /bathroom after those first few days..am sure you will not be in open ward for long. I carried on working until the day I got the call so that filled in some of the “anxious” time but it was pretty awful not knowing when it would all start. Until you are in try and enjoy impromptu family happy stuff/treats as much as you can as it’s a strain for everyone when you are in so try and make the most of now – I know that is easier said than done and I think I deserved an Oscar for acting during this nail biting time. Fingers crossed.
Rebecca
