Hi Angela, I was told you don’t necessarily get pain and still have a good harvest however, the pain I experienced the day before collection was a throbbing, pulsating pain throughout the chest and back mainly. At harvesting the lady said it’s like labour pains – and it was – and she had been told that a lot of people only get relief by being on all fours to relieve the pressure – again like labour – but it was too late for me to try this out as I had the collection that day. Might be worth trying if it does get very painful. I felt the pain was excruciating but, like labour pains, it’s a pain quickly forgotten! Good luck
HI Dick – I have been off treatment since July but trying to get SCT organised has taken a while – harvested beginning of October and been waiting for a bed in Leeds for nearly 5 weeks – I am the next bed available so expect to be in next week so will most likely spend all Xmas and potentially New Year in hospital. Will post if able, I have considerable kidney damage so have been told to expect a rough ride but I am fit so that may counteract that – fingers crossed. Good luck and let’s hope for a fabulous New Year drug free!
Hi carol, I was harvested in October and am awaiting a bed for SCT. I had the heart and lung function test after the collection and it seemed to be a “competing the paperwork” exercise before acceptance to SCT. Think it should have been done before the collection but the dates coincided so was done after. I’m 51 and am fit (despite damaged kidneys). I expected the tests to be more than they were – lungs – blowing in and out at various speeds and intervals and the heart laid down having like an ultrasound check – think just ensuring the blood is flowing round as well as it should be. I expected to be on a treadmill with heart monitors on etc to test fitness! but it was all a bit of a non event. You will have to have the tests done prior to SCT but obviously they feel you are fit enough for it to not hinder the collection. Good luck, Rebecca
Hi Tom, totally gutted to hear your news. I started 2nd round of treatment 1st due to kidney probs and had velcade and 40mg dex – had it once a week every week (no breaks) for 8 months – met another ladys doing this at Scunthorpe but on this site a lot seem to have it twice a week for 3 weeks then a weeks break? – think mine was more copable. Made me tired but not debilitatingly so – played in the tennis league, went to the gym, brisk walked 4 miles most days (this may sound excessive but exercise to me was like an anti depressant (newly diagnosed then) and the more I exercised the better I felt all round – determined not to alter my life etc).Had to go to bed at 9 – 10pm and the moment I closed my eyes I was out for the night. Had some signs of PN in last 2 cycles which went a while after treatment. Finished this July and waiting to SCT at Leeds when a beds available (been waiting 5 weeks now!) but not had any rises in light chains since end of treatment tho’ only got a 95% drop. Met a woman who had 2 yrs remission on this and was trying it for a second time. If it suits you I think it’s quite a “kind” treatment with just fatigue and PN to watch out for – tho’ think you are so mentally strong you could probably push through the fatigue. Good luck, Rebecca
Hi,
Harvesting done – very easy – no sickness at all so hope that's a good sign for SCT. Know you had it bad. I've had no after effects of it all so am busy xmas shopping but whenever you're up for a coffee we could meet at Xscape.
Rebecca
Hi,
Harvest was a breeze – how are you doing now don't see many postings from you, everything still on the up?
Rebecca
Hi Tom, thought I was at least 1 injection short and on 1st day count was 0 so wasted trip but the 2nd day – 5 injections same as you – got 4.4 million so all OK!
Hi Eve,in hospital I started hiccuping during treatment and after 2 hrs a Dr came and gave me CHLORPROMAZINE 25mg tablets (says on packet to take 1 tablet 3 times a day when required – can make you sleepy/no alcohol). I only had 1 tablet and it did the trick. This is what the standard treatment for hiccups is at my hospital.
Hi Scott – going to Jimmys in Leeds for the harvest but treated at Scunthorpe first. So how many days did you have the jabs? more than 4 days pre harvesting? How are your kidneys this week any noticeable improvement
yet? Did you find the pre harvest chemo affected them? worry…worry…worry…
Rebecca
Thanks Scott, fingers n toes crossed for you.
I would have like to wait for SCT until the velcade stopped working as I feel as fit as a fiddle now and feel I am wasting a remission period as I have started on the 2nd line treatment for 1st line treatment -due to kidneys – limiting my options. But they advise not due to age but they're not the ones that'll be living on dialysis if it goes a bit awry.Can;t believe all I used to worry about was wrinkles!
Pls keep me posted with good news
Rebecca
hi Karen,
Is there any chance you could be redeployed/trained to a less physical role but still at the school so you get the hols off? I had a few months off after diagnosis and concentrated on getting fit – physically/mentally. My consultant was always pushing me to resume work as he thinks its good for your sanity but I liked the time off. I did feel that when I resumed work I was very tired (it is a demanding job) and therefore exercise was sacrificed on work days which I don't think is good. I am now trying to go to the gym straight from work even tho I'm tired to keep my fitness and it really helps me mentally and I train more on days off. I feel work does inevitably adversely affects your health/fitness unless you decide to do a smaller job for the social/sanity bit – easier said than done finding one tho. It's a balance on what you deem to be the most important to you.
Out of interest how are your teens coping with your diagnosis. I have not told family yet and its been a year nearly – as I have nearly always been fit etc decided to spare everyone. As SCT is looming I guess I will have tell my daughter but know how difficult this knowledge is to live with and don't want to do it. Any tips please?
Hi Scott, Sorry to hear your "rise" have they offered any explanation i.e. there's still a lot of chemo drugs circulating in your body or is it the usual "we don't know what will happen everyone is different"?
When you harvested did the cyclosomething drug they give you start the process adversely affect your kidneys?
Feeling jittery now about proceeding when there's not a lot of kidney to play with. Fingers crossed yours have just taken a temporary battering and will come good especially with the myloema burden gone.
Good luck
Rebecca
Hi Dawn, just been thinking about the whole work issue as we are the same age and I have a teen daughter – I would like to add that whilst giving up work is difficult on many levels – particularly psychologically – as time is of an "unknown" quantity I work only to live (a bit better). Family takes priority and I will play the system to ensure this remains so ie. I have been allowed to take all summer off on hols as my Dr kindly extended a phased return to work due to chemo. I know I will not be working any other summer also – regardless of how I achieve this. Life is too precious to devote it to work if a family will be at home. I had a fantastic job once and took redundancy as soon as I could when I started a family and this now gives me great comfort that I was at home and enjoyed watching my daughter grow. I have only worked around her and now will do so even more protectively – I don't care if it disrupts the smooth flow of business or incurs overtime costs in the great scheme of things it is of little consequence only my relationship with my family matters.
Hi Dawn, I had a long period off when diagnosed and went back to work whilst on velcade/dex. I was working a 12hr shift pattern which I couldn't do due to tiredness and other kidney complications so was offered the chance to try different work patterns on the basis of the Dr stating a phased return to work. I knew I could not do 12hr anymore as this involved nights but it was made quite clear once the phased return to work period was over I would have to do it/leave/move jobs – I moved to a different team, 6hr days etc. which I don't like and have taken quite a drop in money. Every conversation I have had ends with a "and if you decide to leave we'll be sorry to lose your skills but understand…". I only get the Co. sick pay – no exceptions due to condition – "everyone has be treated the same". It has also been stressed that whilst I have a good sick record and this illness is treated as "one time" should I break a finger, for example, or have any unrelated MM sickness I will be taken through the disciplinary route. I have yet to mention I'll be going through the SCT process in the next few months! – mainly because my Manager never asks how I am and I know they see it as disruptive. I am 51yrs and remain only for the money/death benefits/a taste of normality.
I do know someone with cancer who was on SSP – causing a lot of unnecessary stress over money as his partner was struggling to cope/work – and HR arranged to come round after a few months off work and they thought he was going to be finished on ill health but was told at the meeting (whilst he was laid in bed with a drip in) that in light of his hard work and good work ethic they had rethought their decision and was handed a cheque for £xooo in back pay and is being paid full pay now – and what a difference that has made to their lives and spirit.
I know of someone else who was paid full pay throughout their leukaemia and BMT and they retained a co. car and free petrol which his wife used for hospital visits. When he returned back to work he found another job as soon as he could because his job had been spread out amongst a few people whilst he was off sick and he felt as though he didn't have the same position there!
These three Cos are large employers with good reputations.
Great news Christine, the fact that he is having a continued response so long after transplant is apparently a very good indicator of a longer term remission – there is an article on it on the Myloema Beacon.
Enjoy.
Rebecca
