Hi young Tom….long time since you posted…things must be going well for you. From memory I think you were on the PADI clinical trial at University Hospital, which is why you were able to access Velcade as initial treatment. I did ask my consultant at Ealing to refer me for that trial, but he convinced me that CDT was effective and to save Velcade for relapse. As I have documented elsewhere, I never managed a normal light chain ratio on CDT and my paraprotein returned after only 3 weeks off the drugs. So far all tests post transplant show no paraprotein and normal light chain ratio at last……let’s hope it stays that way. Pre transplant I still had 4% cells in biopsy (was 25% at diagnosis) so am anxiously awaiting day 100 biopsy. Did you decide to take any action after the laboratory ruined your first stem cell collection?
Carol
Hi Mike
Even in Australia Velcade is now available as an up front treatment, but here in the UK we are still limited to the old regime of CDT..cyclophosphamide, dexamethasone and thalidomide. In my case, while CDT worked to bring down my paraprotein I never achieved a normal light chain ratio. Would that have been different with Velcade…who knows? Also my paraprotein returned after only 3 weeks off CDT…again would Velcade have made a difference? All of the research seems to indicate it may have. I am now 8 weeks post transplant and still left wondering if I made the right decision to go o transplant, but again here in the UK, it almost seems that once you are on the myeloma train you stay on the prescribed tracks….CDT followed by SCT, even though many American specialists are not recommending this course of action. All I can hope for now is that having finally achieved a normal light chain ratio and again no paraprotein detectable 4 weeks after transplant, I maintain these results.
Fingers and toes crossed!
Carol
Hi Richard
I haven’t had to go through the assessment as luckily I applied before the change to PIP. Even so I had to appeal their first decision which was to award me the lowest rate of DLA. After my appeal they changed it to a higher rate. I know there has been huge dissatisfaction with the assessments and I think I heard that ATOS are giving up the contract to do them as their staff have been verbally abused. Maybe the changes to the assessment provider may be more favourable for you? But…do they pay you the allowance if you are not living in the UK?
Carol
Megan you are right. It is the ratio you need to monitor as well as the total kappa and lambda numbers.
Carol
Andrew
As I understand it after SCT, complete response looks for no cells in the biopsy and no paraprotein detected. Stringent complete response requires a normal light chain ratio as well. But….I have read of people on this forum who, like you, had paraprotein evident at the 100 day mark, but this continued to decrease as time went on, so don’t despair yet!
I am 49 days post transplant and had no paraprotein evident 3 weeks ago and and a normal light chain ratio (first time since diagnosis) so I am keeping fingers and toes crossed that these numbers hold till the 100 day mark when the biopsy will be repeated. But…so far so good!
Carol
Thanks Jean
I am only 45 days post transplant….hope it is the right thing to be back to the bisphosphonate??? Anybody else know about this?
Carol
It is lovely to have the good blood test results, but I just wish I had more energy! I have my unit for sale too now, so have to keep everything pristine for viewings….stressful! Also, my husband is going overseas on Monday for a month, so I will be home alone. I know I will be fine, it is just that I have been relying on him for driving and grocery shopping. Still I am on monthly appointments now, although the consultant told me I have to resume my monthly parmidronate, so that’s another hospital visit each month. Has anyone else been put back on bisphosphonates? I was hoping to dodge that for a bit longer.
Carol
Hi Angela
It sure does take some time to recover from the dreaded melphalan. I still feel nauseous occasionally, soooooo tired and have to force myself to go out for a walk. After only a short distance I feel weak and shaky but must persist. I am on 2 prophylactic antibiotics (which I hate taking) but the consultant stopped the antivirals a week ago. I have never had chicken pox, so shingles aren’t a threat anyway. I have been so lucky with my job having managed to convince the Governors at school to keep me on full sick pay now for 11 months. I am hoping to return on a phased return after Easter, which allows me to access a new year of sick pay available after 1 April.
I think Graham and you should start checking the disability laws, as surely they cannot make you redundant if you are on sick pay with a disability. I received useful information from my union, which is why I wrote to the Governors. I cannot imagine having to face such an important job interview feeling as I do now. I read about other people discussing the “new normal” after chemotherapy etc., but I just want the old me. I feel so spaced out all the time. And my vision is definitely affected too, so not sure how much time I will be able to work on the computer at school when I do return.
Carol
Graham you are so right. I carefully monitor all of my blood test results and become really annoyed when obstacles are put in my way. These are my results, my cancer and I want to know. I had an accidental win last Wednesday. I was unaware that Hammrsmith was monitoring my iga, paraprotein and free light chains since transplant, so had not asked (and of course was not told) these results. Actually I had been told previously that all would be checked at day 100, along with a biopsy and basically told to wait till then. But….on Wednesday they mucked up my appointment, then couldn’t locate my file, so the consultant accessed my information on the computer. He then casually mentioned that my paraprotein was undetectable on a blood test 2 weeks previously, so of course I questioned him to find out that they have been doing these tests since transplant! (22 January). So that is how I accidentally discovered that after 11 months, I finally have a normal free light chain ratio (courtesy of the lethal melphalan) He did print out the results when I requested them though. So my problem in this case, is not even knowing (or being misinformed) about what the hell they are doing with all this blood they suck from me! Frustrated much!
Carol
Hi Dick
That must make you anxious, but I have read on the forums of people gaining full remission even after 6 months post transplant. I never know if my results are really good or just to be expected, as even though I was really happy (especially about finally attaining a normal free light chain ratio) the consultant doesn’t really comment. Anyway I have decided to award myself an A* for now, but am desperately keeping my fingers crossed so as to maintain the remission.
Carol
Hi Dusk
Yes it is daunting especially when still recovering from such a harsh process as the SCT. However, all of my family is in Australia and at 64 I am ready to retire and try to enjoy whatever years this cancer allows me. Selling in the UK is quite different from Australia as well, so I am just putting my trust in an estate agent and hoping all goes smoothly. I am hoping to sell the flat fully furnished (including crockery, cutlery, linen etc etc) and return to Australia just with a suitcase or 2, so at least won’t have the daunting process of packing up the place. It is amazing how much stuff I have managed to accumulate in 8 years in London.
But….my unit in Australia is just a 5 minute walk from the fabulous beach at Surfer’s Paradise, Gold Coast, Queensland and as well as re- connecting with family and friends I just
want to walk in the sand, soak up the sun and swim in the blue sea! it will be quite a bit different from life in Northolt, west London, that’s for sure!
Carol
Hi Vicki & Colin
Well I am now day 40 days post SCT and am definitely having more good days than bad. All bloods are within normal range and I am eagerly awaiting day 100 when cancer markets will be checked as well as another biopsy. I am still quite fatigued but am down to 1 nap a day instead of 2, so that’s progress. I rarely sleep more than 2 hours at a time through the night which doesn’t really help the fatigue. The last 2 days I have been out walking so must continue that as well…I have been VERY lazy! I am hoping for a phased return to work on 22 April as I am almost at the end of my sick pay! I have also listed my flat for sale, planning to return to Australia in July if all goes well at the 100 day mark.
Carol
I have to admit that when I was with Ealing Hospital I had to battle with the Macmillan nurse in charge of the day ward to get my blood test results. Either she would tell me they were not back (when another department had seen on the computer that they were) that she was too busy to print them; that I should wait till I come back in 3 weeks to get them; that she couldn’t tell me over the phone etc etc etc. Hammersmith Hospital print them out for me…no problem.
Carol
Kim
I agree with you. In my experience the NHS has been nothing but AMAZING! I have dual citizenship (Australian and British) but do not believe that Australia’s Medicare system would have provided me with the care I have had here in London. Actually, in Australia people are almost forced to take out private health insurance or pay an extra Medicare levy in their taxes. The public hospital system which is Medicare, is nowhere near as good as your NHS.
Carol
Hi Angela
Great news about Graham being home. I am up to 32 days post SCT and am definitely having more good days now than bad. Still have some nausea, but no vomiting, no diarrhoea (but frequent toilet visits) but I did read that the melphalan takes at least 6 to 7 weeks before side effects lessen (5 weeks tomorrow for the melphalan). For a while there it was either “chew and spew”(Australian for vomit) or “chew and p**” or both at the same time…..disgusting! No infections at all but I am staying home apart from hospital visits weekly (now fortnightly) I am still really tired, usually having a lie down and often a nap morning and afternoon. Is Graham on the prophylactic antibiotics and anti virals…I hate having to take them but know I must. I keep telling myself to start a walking program, but can’t seem to self motivate! Plus the weather most days is soooooo dreary here in London.
Carol
