Hi Eve, I have not had dialysis tho at diagnosis time went to around 5! They repeated my blood tests as didn’t know how I was standing (I was a fit 50 yrs) I was told by someone on the forum (tho in a private thread) that kidneys could improve and his improved about 3 yrs later and he also told me of a friend who went through SCT on dialysis and 4 years later came off dialysis. I was in a very dark place then more because of my kidneys than MM. He gave me tips to assist kidney function but honestly other than drink the water I do not do anything differently now. 6 months after SCT I was back playing in tennis matches and now I exercise a lot and am not hindered in any normal day to day life with my kidneys. We are all different and my consultant was very concerned about the possible impact of cyclosophomide for stem cell collection. For me it was Ok and I think the younger you are the better it is. I was told I had a 20% of death re SCT because of kidneys but the gamble paid off. Now, I feel, always go with your gut instinct re treatment – not very scientific but them MM is very individual perhaps that is as good as any measure. “Life shrinks or expands by the extent of your courage”
Oops for typos meant dialysis me not finalise me! Not ready for that yet!
Hi Eve, I had my Sct with a kidney function of 20+ maybe 23ish – I can’t remember details now as it was 31/2 yrs ago. SCT carries greater risk with poor kidneys but you do have a lower dose of melphelan to compensate. The Sct did not impact the kidneys further and 31:2 yrs later with no further treatment they average around 32-37. It took about 18 months after Sct before I saw much improvement. After the cycl for stem. Ollectiln my kidneys went up about 4 as the Mm burden was reduced (my kidney function is impacted negatively by just a rise of 10 in kappa/lambda. I had to Sct at a hospital that could finalise me, if needed, without travel but I didn’t need it. My bloods – which are pretty rubbish in general – took a long time to come good (for me) which I blame on the kidney element. Hang on in there and hold onto hope.
Hi Maureen, Sorry to hear about your current situation, fingers n toes crossed for improvement x
Rebecca
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
