Hi Tom…excellent news long may it last…well done young man…stay safe…Phil:-D
Hi Tina…welcome to the site…I hope all goes well with your SCT and recovery is swift…I had SCT in Jan 2011 and am now in Stringent Complete Remission…although I experienced a "bumpy" ride a lot of people seem to cope a lot better…it is all down to the individual …each person's myeloma treatment seems to differ…I too am on the myeloma x1 trial and am monitored (depending on my blood results)every 2 or 4 weeks and at the moment I am doing ok…the only problem is fatigue which is a common side effect …any other queries feel free to post…stay safe…Phil 🙂
Hi Sarah and Henry …WOW…absolutely amazed at the stem cell collection in one sitting ..mine took 3 days..5-6 hours per day..well done young man…good luck to your daughter in her fundraising activities..all of you keep up the good work…stay safe…Phil:-)
Hi Wendy…post SCT I did not have itchy eyes but had itchy neck and arms…used to drive me mad! I went to my GP and tried a range of creams to ease the problem Dermol,Doublebase,Fucidin and Hydrocortisone to name a few…also put moisturising lotion in my bath water…some worked better than others but I found than none of them took it away completely…and lo and behold woke up one day and hey presto the itchyness had gone….strange happenings post SCT 😀 ..stay safe…Phil
Hi Eve and Slim…well done on getting to remission enjoy the cruise and hope 2012 is better for you both…stay safe…Phil
Hi Carol…I had an SCT in Jan2011 (my anniversary coming up wooooppeeee) and have been on the maintenance programme (MYELOMA X1 trial) and I started with 25mg of Revlimid but the damn drug knocked my bloods over so I was taken off for 2 months and am now on 10mg which hopefully my body will be able to stand…I too suffer like you from fatigue and tiredness…but apart from that generally ok…hope your outside hobbies keep you active and healthy…Phil
Helen…we had a 2 week cruise August and use an insurance company called Flexicover…very competitive rates although we did go for their Gold Cover….hope this helps…Phil
Hi Glenn…post SCT my medical team have told me that there is no visible myeloma detectable for them to be able to measure…this is SCR (as far as I am aware)…as regards remission and complete remission I am unable to comment accurately…perhaps contacting myeloma uk infoline for advice would be a good option…regarding my SCT (remembering that everyone has a different experience)I had a fairly rough time with the process and was unable to eat or drink for approx 10 days due a bad case of mucositis …but I have read on this website that some patients have coped fairly well with SCT so it looks like it's luck of the draw… I was in hospital for 18 days and once my bloods results started to improve my recovery was fairly rapid…8 weeks post SCT I attended a Myeloma uk Info day at Bradford…and the Myloma uk staff who we lunched with, were amazed that I was there ..as I have said previously fatigue and tiredness are my main problems…hope this helps…stay safe…Phil
Hello Glenn…sorry to hear that mm has affected you…I was diagnosed with Asymtomatic Myeloma in Sep08( I was 54)…which became "active" in Jul10 with acute kidney failure…had 5 cycles of CRD (Aug -Dec ) and a SCT in Jan11…which has put the mm in a status of Stringent Complete Remission …I am now on the maintenance programme of Revlimid…I cannot comment on any back pain as my mm decided to knock my kidneys over ( down to 10% efficency at the worst point now at 46% so can't grumble)…but regarding the mental battle I really struggled early on and took a little time off work to "recover"… all the usual questions kept popping up and I have found that without the support of my wife and immediate family things may have been a lot different….also I find it vital that you have 100% confidence in your medical team ( which I cannot praise highly enough )..it seems that you have total confidence in them which I find to be a vital reassurance in the journey…I still have severe fatigue and tiredness and still have "dark days"…but as time goes on these become easier to handle….wishing you all the best luck in the future…Phil
Hi Vicky…I had my SCT 11 months ago and was in hospital for 17 days and was unable to eat or drink until the last couple of days(started on ice lollies and ice cream) and suffered with bad mouth and throat ulcers….but…what I found useful (apart from the mouthwashes that you are given) was flat coca-cola to gargle with…I found this cleared most of the "debris" away better than anything else…sorry to be blunt…good luck to your dad…stay safe…Phil
Hi Debs…I am 11 months post SCT and have had 5 cycles of Revlimid @ 25mg (maintenance programme)but have been taken off it for 5 weeks due to low Neutrophils and Platelets…my bloods have recovered somewhat and I have now been put back on 10mg per day…but I have also too had nothing but coughs and colds since SCT….the consultants don't seem too concerned (had a cough for 5 months!!!! had all the scans …x-rays etc all clear) about it but it sure takes a toll on my wellbeing…the advice from my clinic is get down to my GP to make sure there is no infection going on and antibiotics to be prescribed as a precautionary measure if deemed necessary and as Helen says keep anyone with with infections at an arms length…stay safe…Phil
Hi Gill..I was on RCD pathway for 5 cycles prior to my SCT in Jan 11…and my para – protein levels dropped from 16 to 0 (my light chains dropped to normal levels as well )…so it worked very well for me…side effects were tiredness/fatigue(this was a major problem)…slight shakes…itching…fingers locking up so for me fairly minor problems(apart from fatigue)… I an now on x1 trial and on Revlimid maintenance ( on a Revlimid break at the moment due to it knocking my immune system for six)
I wish Stephen all the best luck …stay safe …Phil
Hi Ted…yes the CNS is the nurse who takes care of you… I too am under Dr Cooks team and attend monthly also on a wednesday…stay safe ..Phil
Hi Jim…I was diagnosed June 08 (I am now 58)…but the mm was asymptomatic until Jul10…when it became "active"…I followed the RCD pathway for 5 cycles until SCT in Jan11 …I have been on X1 trial since Jun11…and I have just been taken off Revlimid to give myself a break as it is causing Neutropenia…once my bloods stablise I will be back on Revlimid…albeit on a smaller dose…I struggled in the early months to accept mm and I still have up and down days…I attend St James in Leeds and have the highest regard for the WHOLE team who take care of us…my CNS gave me the best piece of advice ever and that was to take it one step at a time and don't try to look too far "down the line" …one step at a time…I am quite sure that your team will have your best interests at heart….take care and stay positive …best wishes to you and your family…Phil
Hi Alex…I am 9 months post SCT and am on 5th cycle of Revlimid post SCT (Myeloma x1 trial) …and I can relate to what John goes through (light headiness…feeling as if I am not in my body etc) but was successful in getting my mm to complete stringent remission…but on the maintenance programme the Revlimid has now caused my Platelets to drop to 23 and my Neutrophils to drop to 0.22…still the most concerning issue I have is the fatigue…it really affects DAILY life..and doing exercise and overdoing it as my consultant said today is a two edge sword…so don't overdo it and listen to what your body tells you…both of you stay safe…Phil 🙂
Hi Jet….I had my SCT in January 2011 and although as you say every transplant effects each individual differently I can relate to some of the side effects of the treatment as mentioned by other patients…my own personal journey with monster melphalan was whilst in hospital being sick and with diarrohea….mouth and gullet infection ( used 2 types of mouthwash 4 times a day)…fatigue and no appetite(was on drips for 10 /11 days)…was in for 18 days in total and as soon as my neutrofils recovered I was allowed home….when home the sick and mouth problems gradually got better( probably 2 weeks)..but again fatigue was a big problem (for me personally as I like to be up and about)…I am now 7 months "down the line" and am part of the myeloma xi trial and taking revlimid on a 21/28 day cycle and again apart from fatigue and itchy skin (rashes) am doing very well… I visited a local myeloma day organised by Myeloma UK after 8 weeks post SCT(the Myeloma UK support team were amazed to see me attending) and found that everybody had a different story… some worse… some better than my own experience which has had it's high's and lows …go in with a positive mind and stay strong and as my nurses kept telling me you WILL get better…my best wishes for the future…Phil
