Hi Ivan, At what gfr was you prior to transplant please – was it a known big risk with your kidneys to transplant? I have low kidney function and they were not affected by the transplant but always like to gain information in the event of future treatment. Thanks
Rebecca
Hi, sorry to hear your remission has not been very long and am glad you have good coping strategies in place. I totally agree with regards yoga and meditation. I used to do yoga as a calming influence during treatment (now abandoned in remission) and went to some Buddhist teachings which included mindfulness and I guess I learnt that I am in control of my emotions and I can choose how to react and therefore I can choose to make myself miserable or I can choose to move forwards. At a time when everything seems out of your control it is good to make peace with it and move forward. However, I did exercise a lot and I think this was for 2 reasons 1. I always did so it was a “carry on as normal/won’t be beaten” attitude 2. In hindsight, I feel I was punishing my body that had let me down and I seemed to take my anger out only on my body. I was constantly testing to see how much I could push it and at times I also knew this was very unwise because I had heart arrhythmia during treatment. What I got from exercise was a feeling of being “normal” “well” “happy endorphins” and a feeling that well “if I can do that I can’t be that bad” type of thing – so I guess it helped/s my innate denial that this will kill me (which I sensibly know it will but still feel it won’t – strange I know!). MM is a real mind game and I am going back to good mental practises now in readiness for a relapse. I would love to meditate and have tried so many times but never really feel I achieve it but aim to keep trying. I am also learning Reiki in the hope that it will prove useful for all the family when a relapse occurs. I guess a healthy mixture of mind and body things will smooth the waters. I do think that anyone who has MM should try different things to help them cope. I hope your 2nd SCT does the trick. It would be really good to continue to post as I think there will be many having to contemplate 2nd Scts and worry about the impact on ones body and it is always useful to hear individual stories. Good luck. Rebecca
Hi Katy, Whilst you don’t lose your hair on many of the treatments it does get in very bad condition – mine was/is always shoulder length – if I had my time over (which I will at some point) I would opt for a short haircut. Regards wigs – I chose not to tell anyone about my cancer and spent a fortune on very natural wigs so no-one would know – matched to my hair/length etc – cost a fortune as they are hard to keep well at shoulder length. Again, I would cut hair in treatment and go for short wigs (that can’t rub on collars etc)- you do not have to pay a fortune to have fantastic hair. I missed my wig when I finally took it off as it was great to just pop on and go! but after SCT I found it too hot to play tennis in the sun with the wig on. Throughout treatment and even now I collected motivational quotes to “gee” me on. The first one was always quoted on this site by a past member Eve and it became my mantra and when my mind started to wonder into unhealthy territory I repeated it over and over again – ” Worry does not empty tomorrow of it’s troubles, it empties today of its strength”. I believe MM is a real mind game – much harder that any of the treatment… I also liked “Be miserable or motivate yourself – its always your choice”. I am sure you will find your own particular coping mechanisms that will help you along the way.
Hi Sandra, Sorry to hear your news but even on the rise it could be a watch and wait until treatment actually needs to start so can’t think of anything better to set you up for the ride ahead than a good old jaunt with friends before travelling abroad becomes a no-no. Go for it
Rebecca x
Hi Katy, At 62 your mum will no doubt do the treatment including an SCT. She is lucky in that she will be treated early and therefore her body is in a much stronger position for the task ahead. I was diagnosed at 51 and am 2 years at xmas post SCT and no treatment (for now). Please ensure you stop supplements when treatment commences as some can interfere with their efficiency, exercise and eat healthily and plan plenty of little treats a long the way. None of it is pleasant but it is perfectly doable. Hope your mum comes on here because as treatment starts its really good to ask others who have been there about anything that you are wondering about or worrying about. This is tough so start mental discipline and that means trying to not let MM take over your life/thoughts all the time. You need to be positive and realise quickly that worry does not help anything and merely drains your strength – look towards something that will help you stay strong/relaxed. I liked to exercise and that helped me a lot mentally and I also read up and took a few mindfulness classes – this helped me focus on day to day living without constantly wondering about the future/family. The stronger you make yourself the easier this time will be. I am also a great believer in treats – you will know from your first treatment cycle your up days and the down days – plan things to fit this rhythm – ride the waves. I always felt it important to remember that “you cannot always control what happens to you but you can control what happens in you”. When my hair was growing back and I was having a “bad” hair day I was reminded that my hair did not control my emotions – it was all me and how I chose to react to it- I think we all need a different mindset in challenging situations and the earlier it is developed the easier it will be.
Best wishes,
Rebecca
Hi you too, well done and now for the easy/enjoyable bit of recovery. Have read your posts with interest (mine was 2 years ago this xmas) – for some reason this site allows my sign in about once in 50 attempts so I am a bit late in the “encouragement” dept. Would add that in 3 months suspect you will be totally back to full fitness/life. Take care with the winter bugs and try not to rush back to work – respect that this has been a major trauma (whether you accept it as such or not!) and start planning next years goals with great hope and zeal of a very long treatment free remission – yeeaah. The memory of SCT fades very quickly for the “patient” however please recognise every step you have taken will be firmly imprinted on your families minds so …lots of treats, indulgence and whatever floats your boat for all. Enjoy
Rebecca
Thanks for that, yes it is less sensitive to my translocations but will throw my hat in the ring as nothing to lose. Am still ok but can’t shake off a cold I’ve had for 3 weeks and played 3 1/2 hrs tennis today but been told by the coach that I’ve got to stop playing now until next week and recover as my tiredness is affecting my performance. All sounds very normal and I have been trying to play through it but – when you put your myeloma hat on does it all start looking at a dodgy stage? I am ashamed to say that instead of my 2 1/2 days on easy hours I have recently increased them to now 3 long 10 hr days which makes me tired and grumpy as well. Have been very lax with everything so going back to the drawing board and taking some vits, relinquishing my extra hours and hopefully my January bloods will still be ok – but what worrys me is if they are not will I be plagued with the fact that I increased hours (albeit temporarily etc?). Ah well such is the mm bubble…gonna just prick it now! Hope you have never looked back on your retirement. Thanks
Rebecca
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!
