Hi Kerry no wonder you are scaredits so bewildering and frightening at first but it will get better The plasmacytoma can be treated with steroids initially to reduce it and then radiotherapy is amazing at getting rid of tumours , I dont know if thats appropriate for your partner but I am sure his doctors will be looking at the best and quickest treatment for him. The specialist nurse is a good person for you to talk to about his treatment and the helpline on this site is manned by qualified nurses only too glad to help. Dont be afraid to ask the doctors what their plans are and any other questions you have. I have had successful treatment on tumours on my spine with steroids and radiotherapy totally painless too. I am sure you will get lots of replies to yourpost this site is a godsend when you need support we will all be here to answer questions and just listen when you need a rant so dont hesitate to post . I hope things get easier very soon Keep your chin up it will get better Bridget
Evening all I have now ordered the laptop from PC World who say I am saving £220 , well dont believe that but I am saving a £100 so very chuffed !! And it will arrive on Thursday yippee !What a difference a day makes love Bridget x
Hi Roberta lovely to hear from you and thankyou for your kind words. Sorry you have been unwell I hopethings start to get better for you very soonStay in touch when you are up to it love Bridget x
Hi Dai sorry I havent got round to answering you yet Revlimid , Velcade and Bendamustine failed to make any impact over periods of more than 3 months Each time a new tumour developed the latest is not the most painfulbut seems to have become very large in a short space of time so a bit scary especially the risk of paralysis I will certainly enjoy my new toys I am hoping to get the cash back but there is a scrape on the rear wing so I wont bank on it It is a much better scheme all round now than 10 years ago when I drove my daughters Motability vehicle and the fact that we dont have to find extra cash for servicing etc is a big relief Unfortunately the Motability scheme is the latest Daily Mail campaign, they use headlines that imply we are all scroungers who drive luxury cars!!As if ! I know I would be virtually housebound without a car now .!What car did you get? I went for another Astra as the lumbar support in the drivers seat is great for my back , and its pretty I am going to search for the best price for my laptop now PCworld have it at £309.99 reduced from £522 they say , even if it wasnt that dear I think it still seems a good price and has the features I want love Bridget x
Hi Dai it is such a nuisance when you cant get the results when you need them! Like you I used to be very responsive to blood tests until after my first relapse , since then I have become a non-secretor This is likely to excludeme from some trials as they will be unable to measure performance It is so frustrating so I know how you feel although you have the added pressure of getting onto the trial before it closes The results for Rev are improving all the time so thats not a bad default treatment , unfortunately it didnt work for me but then I am an awkward bugger!!Heres hoping Carfilzomib gets its licence sooner rather than later Being positive is the only way to go love Bridget x
Hi Jean I got a bad fit of the giggles reading your post I could just picture it!! The other thing that struck me is how innocent people were in the fifties, so different from now Roll on Sunday evening ! love Bridget x
Thankyou John, David and Min how good it is to have friends who care I am as calm as can be really Had to tell the kids in a very matter of fact way so that they dont panic which helps me get a grip As you say Min tomorrow is another day and there is no choice but to get on with it! Mind you there might be a bit of whinging after 4 days of the devil drug –DEX!!! On a good note it looks like I am going to be able to get a new laptop hurray and my new car will be here on the 1st March Life is good love Bridget x
Hi Glenn great news about your tumour Heres hoping you get your sct very soon and have a very lng remission love Bridget x
Hi Mal and Bruce good luck for tomorrow hope all goes well love Bridget x
Hi Tina and Geraldine welcome to the best support site there is!! Its good to hear you have faith in your doctors it makes such a difference Although you are probably feeling overwhemed at the thought of chemo and stem cell transplant at the moment it will gradually all make sense and become less scary Lots of people on here have had a stem cell transplant so ask any questions and you will get lots of replies Good luck with your op on the 5th Bridget
Hi Min I am so glad you had a good week even if it was exhausting !! I did worry about you on your birthday as it must be very hrd without Peter there but I am glad it wasnt as bad as you thought it would be . Hope you have lots of fun with your grandaughter even if you need earplugs !! My grandson is exactly the same never stops chattering but I love it really How lucky we are to be able to spend precious time with them You will love the cruise , being a lady of leisure! Where are you cruising? Afriend of mne goes on several short cruises each year and tells me its addictive The weather is supposed to get warmer from tomorrow , fingers crossed they are right cos I bloody hate being this cold This morning I was feeling awful after my Bendamustine infusion yesterday but I had to trek into London for an mri in temperatures of -8 and foggy To say I was a misery is an understatement especially as this one was really painful , my back, so I was very glad when it was over At least when I get the results I will know whether its working , I hope so really dont fancy having very aggressive chemo Have a good weekend love Bridget x
Well the forcasters got it right again today and we have had more snow tonight . Its very light but as its falling onto ice and compacted snow it will make driving and walkng tricky tomorrow. I am not looking forward to my trip to London for chemo tomorrow followed by another journey there on Saturday for an mri Hope you are all safe and warm love Bridget x ps if I am a bit quiet on here its because I still have no latop and I have to ask my sister-in-law to lend me hers ( I am desperate to get another laptop soon !!) x
Hi L yn its so good to hear that Peter has improved , it must be a huge relef for you . The stem cell transplant is scary but try not to get too anxious , there are lots of us on here who have gone through it and although its not the most pleasant time it will get better The benefit of having a long period of remission without the need for treatment makes it worth going through Having just read both yours and Craigs posts it brought home to me how hard it is to support a partner with myeloma . I am sure Etta and Peter feel much better just knowing you are there for them. I know I would be lost without my husbands support Like Etta I get very frustrated at not being able to do things I used to and poor Jeff sometimes bears the brunt of my frustration. I agree with Craig about being honest , I know Jeff will always tell me exactly how things are , good or bad, whereas other relatives are not always able to as they are worried I will be upset My advice to both of you is make some time for yourselves too Go and do something which has nothing to do with myeloma or hospitals whether it is walk or shopping or a hobby You need to have a break and I am certain it will make Etta and Peter feel less guilty at being responsible for putting you under pressure My husband goes out for a few hours on Saturday evenings and will go to the cinema ( I dont go as the seats make my back very painful) and I am much happier knowing he has some fun love to you both Bridget
Hi Peter and welcome I hope we can reassure you both As Eve said the build up to treatment and the anxiety that goes with it can often leave you feeling a little depressed as well as the physical symptoms once you stop treatment. I am sure your wifes specialist nurse or gp would be able to help, sleeping tablets would help in raising energy levels One of the most annoying symptoms of myeloma is fatigue but I am sure it will get betterin time . I hope your wife begins to feel better soon Best wishes to you both Bridget
Hi Chris welcome to the best supporters club there is !! You have had a tough couple of years but good to hear things are going well I am sure your positive attitude has helped a lot . I am a positive person who puts mm on the back burner most of the time, an optician once asked if I had any illness and my automatic answer was no , very embarassing when I realised my mistake after 5 mins !! Take care of yourself and I hope those numbers keep dropping Bridget
