[brochoParticipant]

Thank you all for your lovely wishes and kind words Its at times like this that we appreciate good friends who understand, I am so thankful that I found this site way back when !! I am less shell shocked now and I keep thinking of random things which leave poor Jeff rather puzzled But on the whole I am being a bit of an ostrich and burying my head in the sand, there is too much living to be done so no time for thinking about dying Sue I know how Michael must feel , I am on 40mg Dex a week plus 100mg Thalidomide to try and hold things at bay It must be so hard for you Sue I feel so guilty that Jeff has to go through this too but I couldnt do it without him! Dai the likelihood of getting on a trial is very small as I am a non-secretor which makes me ineligible My doctors have really tried hard to get me on one to no avail. There is the posssibility of going back to something I have had before but as nothing has been very effective its unlikely to work The other possibility is Melphalan but I would not be able to tolerate a high dose after 4 years of chemo. I will wait and see what they suggest in a few weeks Sorry if this is a bit rambling but thats how my brain is at the moment!! Lots of love Bridget x

[brochoParticipant]

Well I had clinic today and it wasnt a pleasant experience to say the least Basically I have had all the myeloma treatments over the last five years and none has worked for any significant time The team at UCH have been looking for a trial but that is no longer an option due to the fact I am a non- secretor Its possible they may retry something I have had in the past but as nothing has worked brilliantly this is not likely to be much good The reast of the conversation was about me having access to macmillan and the local hospice Well no clinic for 4 weeks which will feel strange At the moment I feel as if there is a huge stone hovering above me waiting to fall hopefully I will get my head around it in the next few days One thing I did say was I am not ready to give up yet but realistically there is little they can do lots of love Bridget x

[brochoParticipant]

Hi Amelie sorry to hear John didnt get a longer remission but quite a few people have said they found their second sct easier than the first one so try not to worry too much . I dont know why Thalidomide was chosen its something that his doctors would be able to tell you. I think you may be thinking of ice pops to suck whilst he is having his melphalan these are flavoured ice sticks and taste a bit nicer than plain ice Good luck to John hope he gets a long remission this time love Bridget x

[brochoParticipant]

Hi Terry welcome glad you found us. You were lucky they spotted your myeloma early before any damage was done Your doctors sound impressive and very cutting edge , you will be able to access new treatments as well This site is brilliant you wont find a more supportive group of people anywhere and its not all gloom and doom either we share laughs as well Good luck with everything Bridget

[brochoParticipant]

Hi Dai what a bugger!! Rev and Dex have proved to get good results though and as you say the other advantage is freedom from hospital visits. I hope it does the trick but at least if you do need further treatment Carfilzomib would be an option and may be more readily available love Bridget x

[brochoParticipant]

Hi Andy welcome . Its sometimes funny when you find yourself doing mad things because of steroids!! There have been times when I found myself cleaning like a mad thing at 3 am !Like you I was diagnosed after about a year of back pain and they discovered 3 vertebrae had been destroyed completely After surgery to stabilise my spine with huge amounts of metal I am about 3 inches shorter than I used to be , very annoying . I think we all learn as we go along the path that myeloma has set for us Have a good day Bridget

[brochoParticipant]

Hi Mavis you arent alone in having senior moments I have them all the time!! My grandson is 11 and at the moment he tries to appear like a cool teenager half the time , the other half he is the little boy who takes teddies to bed!! Bless him They are under so much pressure to grow up quickly these days its such a shame they cant keep their innocence for a bit longer . I bet your grandchildren are excited too. Having grandchildren makes all the hard work of being a parent worthwhile Have a wonderful time love Bridget x

[brochoParticipant]

Hi Eve I must admit London isnt my favourite place either too busy and too noisy , perhaps 30 years ago I would have had fun but not now . I dont drive into London luckily Jeff doesnt mind so he drives as I cant manage the walking and stairs when going by train. Most weeks I am there at least once and every fourth week I go twice a week not my idea of a fun outing. I love spring too it really cheers me up to see the leaves coming back and flowers coming to life Being stuck in UCH for five weeks was the hardest part of my sct , the family werent able to come up after work and friends couldnt pop in either Jeff was brilliant and came every day otherwise I would have gone nuts Do Kings have accomodation for you if you want it ? Hope the waiting doesnt seem too long love Bridget x

[brochoParticipant]

Hi Eve great news it always feels better when things get moving. Is Slim close to making a decision yet ? It is a scary decision to have to make but the benefits could be immense if all goes well , that just makes it harder to decide though. If you do drive into London there are disabled parking bays dotted around all over the place which you can use with your blue badge The train is a good option but there can be a lot of walking which could be difficult for Slim You could try ringing the hospital to see if they issue parking permits. love Bridget x

[brochoParticipant]

Hi Alan sorry you didnt get enough cells today try not to worry though the little blighters will be fighting to get out by Wednesday!! I had a similiar situation , the first two days I hardly produced any but on the last day they got more than enough Good luck Bridget

[brochoParticipant]

Hi Dave welcome sorry but I havent got any useful information for you about second scts at your age It seems each hospital has its own protocol and cut off point. If your pps are rising slowly and there are no other symptoms then maybe the drugs available now would be a safer option Good luck in making your decision Bridget

[brochoParticipant]

Hi Sylvia the gremlins manage to hide a few posts on here just like they hide things in my house!! I cant remember where I posted it either ! Its good to hear from you though Stay well love Bridget x

[brochoParticipant]

Whooppee!! Thats the sort of news that cheers us all up Tom !! Enjoy yourself love Bridgetx

[brochoParticipant]

Hi everyone just a little update Today I saw the radiotherapist and their decision was that I could have have one dose of radiotherapy on the tumour I think they would have preferred to do more but because I have had treatment on the same site before they were unable to They were very good though as I was able to have the scan and treatment today rather than coming back on another day The only downside was the 5 hour wait between the scan and treatment , exhausting , as ususual I nodded off and woke up to find I had been dribbbling , classy !!! I asked about the surgeons opinion and was told he had said surgery was too dangerous , I wasnt relishing surgery at all . I am a bit worried that one dose of radiotherapy wont be enough to get rid of the tumour and the thought of living on a knife edge in case it presses on my spinal; nerves is not very appealing Still radiotherapy has worked well twice before so I am optimistic I will ask on Thursday whether another mri is on the cards as it will save me from worrying ( the number of mris I have had must be costing the NHS a fortune!) On the way home I think my temp must have shot up I was shaking uncontrollably and freezing cold , it took a few hours to feel human again , not sure whats going on but it may have just been exhaustion Thats all mny news sorry if its boring love Bridget x

[brochoParticipant]

Hi Dai blimey you are going to have a full on day Monday ! Still it will be worth it if you get on the trial All fingers toes etc are crossed for you love Bridget x

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