Hi Eva, I am in London and attend the Medical Day Centre at Whipps Cross Hospital in Leytonstone, East London. I have to say the care I get there is terrific. The injection goes into my tummy in seconds, painless, but I have to have a one hour saline drip to hydrate me beforehand and that goes in via a cannula.It can hurt but I always get a huge bruise which can be tender. I guess there is no way round that. Anyway I hope you can get the treatment as painfree as poss. Look forward to an update and good luck. Sylvia
So your post is finally here! I got onto my Pc today and clicked the link so that was what was needed. now I know what I am doing! I printed off the email so I could reply but I expect you have seen my earlier posting now.Did you get a good response when you relapsed the second time?I know you are having pain treatment but are you in remission again now? Can I use this post to apologise to Keith, I think I called him Kevin earlier—senior moment! I read earlier Keith that you are pain free, how great is that! Life takes on a whole new meaning, and Spring is just around the corner isn't it Tom? Onwards and upwards! Bridget, please say you are feeling better, I so felt for you when I read your last post! Sorry Gaye using this post but I know you feel exactly as I do towards our friends and only wishing the best for them all. Thank you again for your lovely words of encouragement. Yes, I think the girl done good! Love Sylvia x
Hi Gaye, I have still not been able to find the post you made. I don't know if it will be on your thread or mine. I may get more joy when I get to the PC upstairs rather than my laptop as that is where I first read the email notifying me as to your posting. We shall see. Meanwhile I am happy to bring you, and all our friends out there, upto speed altho' I have to say I am feeling somewhat guilty as things seem to be going so well for me and I know it is not the same for many of you. I went to the Centre for my 3rd injection yesterday and before I had it was told my p.protein was down from22 to 10 and that after only 2 jabs! I am the speediest star in the West! I am constantly reminded of how fast was my first course of treatment, from 55 to 2 after 3 cycles altho' they did give me the 4th cycle and I am sure I don't know what they will do this time. I am also unbelievably lucky I don't get any side effects ( sorry!)so I am feeling really well it is hard to believe I have this disease. ( just my back stopping me from leading a normal life).You can see why I am feeling for all of you. How are you doing Gaye and what about your Velcade Kevin? For what it is worth I do believe I am very lucky with my team. We are sure the one jab a week, subC is the way to go both withspeed of result and lack of effects, especially the dreaded Neuropathy.I would say to anyone out there who gets the chance, definitely discuss it with your teams and please God you get some great results too.Please keep in touch and I hope our Newbies are benefitting from all the support too. Love Sylvia
Gaye I know you have posted something for me but I can't find it. How stupid am I? I thought the thread would just continue. I've checked my name and yours. Any ideas? Sylvia
Hi Gaye, like the others I was moved by your 'thought'and have been encouraged by your posts. We all hold you in very high esteem. When I was first diagnosed last January I did not name my disease to anyone except my immediate family and one couple, our dearest friends. I did not want to face the perception the word cancer engenders in people.I just said I had a blood disorder and whilst not curable,was maintainable as that was indeed what I was told. It helped me cope and it helped my friends cope, although as I recovered and got back to looking myself many friends confessed how they had feared for me. Apparently I looked pretty rough! I don't mind so much now and if anyone asks point blank I tell them. Sadly the protein has returned so I am now on Velcade,so far so good but it was a shock it came back in just about a year. I just hope that is not ominous!Love and best wishes to everyone. I agree with the comments on how great is this circle of friendship and support. Sylvia
Hi Keith, so glad yor salty problem is resolved. How are you after your Velcade? I have just had the first of my 8 injections, so far, so good. Am hoping you have gone straight into remission. Love Sylvia
Thanks Bridget, as we speak we are getting ready for another little treat, combining an overnight stay with a visit to my husband's sister.I am embarrassed to admit I have yet to try including photos but I will give it a go.Keep well. Sylvia x
Thanks Bridget I may well ask. I remember the surgeon talking about pain relief patches.Your saying 'going to do the Sunday roast' cheered me up. A couple of weeks ago I did good old Spag Bol, the first meal I had cooked for a year. My poor long-suffering husband has had to do everything, cooking, shopping, cleaning,washing and ironing and has been absolutely marvellous. I am gradually trying new things, hoping to get behind the wheel again soon as that would make a lot of difference, to both of us.We are certainly going out more–lunches Afternoon Teas and even Breakfasts and a couple of Sundays ago had a trip on the Thames,lunch with a live Jazz Band.I have found these little treats have helped me cope, well both of us really. We have booked a mini cruise end of April to Ireland and a 2 week one to the Baltic in the Summer which we had booked for last year but had to cancel.I am so hoping I am mobile enough to cope.My biggest worry now is regaining control of the kitchen!! Love Sylvia
Thanks Tom, isn't it nice that Spring is just around the corner? It makes so much difference when the ole sun is shining, as it is here today, especially when you are stuck in a chair for hours on end. The pleasure then comes from a sunny day looking out over the garden and the thought of better days to come. Love Sylvia
Hi Bridget, thanks again for your reply. Yes it seems our cases are different. I do still get pain around my back, waist but it is hard to know how much is from the op and how much from MM so you just don't know what, if any will go, or what you are stuck with. I take 2 Cocodomol 4 times a day and anything upto 6x5ml of Oramorph depending on how I am going.Thank goodness it is seldom excruciating but like you I can't walk any distance or stand for long. I have to keep telling myself to be patient, after all I was almost a year crouched over and this old 70 year old body with all its probably non- existant muscle and ligament tone , is going to take a lot of time and effort to recover. I cling to the image of my surgeon leaning forward and saying 'you will get better' So, yes in Tom's words onwards and upwards and roll on Summer. Just a by word to Gaye if I may, we seem to have conjured quite a picture, us two old biddies with our sticks!Now we have a mental picture to include Bridget, how far can this go?! If it raises a few smiles then that's fine by me. Keep smiling all of you, and keep in touch.Your care and encouragement is like an additional treatment, with only good side effects. Love Sylvia
Hi Bridget, thank you so much for your reply and from a fellow 'operation' patient. Yours sounds even worse than mine I am so pleased you have made agood recovery from that. Your info was very useful, I suppose my big question is were you bent over before you op and if so are you upright now?You say it was four years ago. How long would you say you were pain free from the op, all the other pains to the side?Sylvia
Hi Tom, thanks for the intro to this newby! If you read my reply to Gaye you will see how amused I was by her description too. She and I would be like 2 peas in a pod as I am a young 70 year old but bent!The Dex I had last year does not seem to have affected me as others have experienced so now I feel I missed out I could do with a surge of energy! We shall see what the next course does. Thank you again for your encouragement I am feeling most welcomed into the group. Sylvia
Gaye what a delight you are! I almost wish I was returning to Barts just so I could run into you, two bent up old crones with sticks, what a picture!However on a serious note, as MM has returned I won't be considering SCT for the time being which was why I was there,nor have I agreed to Clinical Trials as I feel I need to concentrate on my recovery and getting full mobility and regaining my posture.Perhaps in the future in which case I would let you know as I would love to meet up.Thank you for your good wishes and I shall be following your posts with interest. Sylvia
Hi Keith, thank you so much for your response. As with Gaye I had read several of your posts so knew you had started Velcade.I am so glad for you it has started well. How good is it when pain subsides! Long may it continue.With regard to my surgery I had no choice, I would have become more and more bent over apparently so it had to be done. So now it is just a case of keep doing the exercises and fingers crossed I get upright again.At least that was my priority till last Monday when I was told the dreaded MM had returned, somewhat quicker than I had hoped, just about a year. On that score I would be interested to know what gaps others have experienced. I know you went 2 1/2 years which was fantastic and if I am honest, more like I had hoped for. The irony for me is I was not really able to 'enjoy' my remission fully because of my spine and subsequent surgery. I feel robbed! not fair! and so on.Still as I have said I am a glass half full person so I have high hopes of the Velcade and your experience has encouraged me further.I was also very lucky with my first treatment including the Dex in that it didn't really affect me, so fingers crossed I can sail through this lot, with few if no side effects and a good outcome. Incidentally, and this may be of interest to others out there, I seem to be lucky in having an enlightened consultant in that I shall be having one injection a week for 8 weeks and having it sub-C not int-v as current thinking is both are just as effective and side effects are considerably less likely! So watch this space! Meanwhile thank you again Keith, good luck with the rest of you treatment and rest assured I shall be waiting for your posts. Sylvia
Gaye, thank you for responding and so quickly. I have read many of your posts today ( first time for me on the Forum) and feel very privileged to hear from you. Yes I was to have had the Kyphoplasty but unfortunately my condition deteriorated whilst I was having my first course or treatment so I had to have a more serious procedure involving screws in several vertebrae. I came out of hospital on the 5th day and had to wear a brace for 6 weeks, then a further 6 weeks when I went out.I have regular Physio and do exercises at home and whilst I know I am making progress it is very slow. The surgeon has told me it could take upto a year but I will get better. I suppose I just want to believe I will one day be without pain and be upright again but sometimes you just feel it is not going to happen. Obviously the fact the dreaded MM has returned in just under a year is depressing but I am a glass half full person, like you I am sure and am very hopeful the Velcade will give me a longer remission and hopefully no side effects. I was very lucky last time and have read with some astonishment some of the posts re the dreaded Dex! I just found I ate more but for me that was a good thing as I had lost 3 1/2 stone! Thank you again and good luck with your treatment, I shall be following avidly.Sylvia
