[docmikeParticipant]

Dear All,
day 98 post asct
I am starting to feel better despite my first persistent cold but it has not been plain sailing but I will discuss this elsewhere on separate threads on side effects (skin and heart complications).
I have still only achieved a partial response ,albeit the sequential samples post asct have shown a fall in the m protein down to 9 so hoping the decrease will continue. But I have been accepted on maintenance trial with ixazomib (oralPI)(double blind with 60% chance of receiving active drug ) so i hope this increases my chances of further clearance or longer remission
So my further progress will not be on the smouldering thread .
However I will add contribution to this thread when appropriate as now with the new nice guidelines see above .
Mike

[kpParticipant]

Hi Mike, so glad you are starting to feel better but sorry to read you have only achieved a partial response. I hope you will find that involvement in the trial does increase chance of keeping the MM under control.
Very best wishes

Karen

[HarmonyParticipant]

Hi Mike,
Sounds like you have really been through the mill – evidently, it’s a tough road to travel and inner strength seems to be an absolute necessity. I always get the sense that you ae able to be in control which I think is such a benefit. I hope that when my time comes for treatment, I can be as strong and proactive as you are. Let’s hope that the trial works well for you. I think that it’s great that there are different options to try. It’s good of you to always think of others- I am thinking of you and wishing you remission.

[rebeccaRParticipant]

Hi Mike, If you don’t mind sharing I am interested in any heart complications you may have had during SCt – it is an area I am researching at them moment. I had my SCT over 2 yrs ago and since them my BP is on the low side (not uncommon from the US site) and I now have a resting heart rate of 45 – 50 – tho generally 50 – and yet I am extremely fit etc.I have heard of a few others in the US where this has occurred and is unexplained. I should be offered a 2nd SCt when in relapse so am keen to gather all experiences re. the impact on the heart as I know it is much more likely on the 2nd one. Thank you

Rebecca

[docmikeParticipant]

Hi Rebecca,
I am about to describe my heart complications on the side effects thread but if your resting pulse is 50 it suggests your are very fit (do you run marathons perhaps??) and that there is no heart damage . I cant get me pulse below 80 yet altho things are improving and I have no cardiac symptoms but just feel unfit which is perhaps normal 100 days post asct .I would be interested in your reference about more heart complications after second asct?.An echocardiogram before the second asct (which hopefully youll never need ) seems the reassuring solution.
Best wishes Mike

[rebeccaRParticipant]

Hi thanks, I am probably not as fit I think but for nearing 55yrs now think I am fit – I can manage about 40 minutes on treadmill at 5.8 miles per hour only! think I could go on a lot longer but boredom more than anything sets in. My consultant said it was abnormal and asked if I wanted an ECg but as I feel ok declined last time but think I will reconsider as when I was at work it was still only 47 – which I now find disconcerting. I have read a few people comments about a 2nd SCT on both the UK and US site where, without much specific detail, more of a “warning” when going into the 2nd SCt that any benefits gained can be negated by it totally damaging either heart or lungs – but I guess for some it’s perhaps a step too far and as with everything, you never know if that’s you until you’ve taken the plunge. RE low blood pressure/heart beat following SCT (altho mine has occurred more in the last 6 months only) one guy has such a gap between resting beats that it appears to set off the flatlining machines at the hospital when wired up and he was told they never really know what impact the SCT will have on the heart. After my SCt I would say my fitness was back 6 months after but that was gained totally from the 3rd to 6th month when I was feeling better. I play tennis and when I went back after my SCT I literally had the speed of movement of a very old person and my coach even suggested I started back with a green soft ball (for the little kids) as my reflexes etc were sooooo slow. It took going down every day for 10 – 15 minutes only just gently having a knock to start to get anything back (tho I was quite ill when I was home from SCt). It was a very slow process that took a lot of determination to resume what I had before but somehow I just started gaining momentum after the third month when I started to feel better. I hasten to say I chose not to rush back to work and take 6 months off + more with accrued holidays just to concentrate on getting fit and having “me” time. had I gone back after 3 months it would have been a much harder slog and whilst I was off my main job was to get back to normal/fitness. Good luck and thanks.

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