Hi ANdy,
I read with interest how you are doing on Pom/Dex, I am finding it exactly the same, the Dex is hard to swallow, 20tablets each Friday is so much harder for me to do than 10 each day for two days I was on before with velcade-which didn’t work at all for me.I always sweat badly when eating my main meal on the Friday, be it lunch time or evening meal, trouble sleeping, wake up really early and very hungry all the time, then the lovely moon face on Saturday. The chemo however seems to be giving me no side effects! I just hope it works, I will know on 7th November, I have light chain myeloma which measured 2732 after velcade they hit the heady heights of 4000! Surprisingly I look and feel very well but cannot tolerate pain relief, I have tried tablets and pain patches but both made me tired and zombie like, so it’s back to good old paracetamol for now and resting when the pain gets bad.
Sorry for long post but I am steroid full tonight, makes us ramble.
Best wishes to you
Babs
Hi Carol,
I can only tell you of mine and another ladies experience who I met at our stem cell harvest, We both had the injections but unlike Tom the pains did get quite severe, (my daughter was looking after me and was so concerned she took me to the local A&E where they phoned Kings where my SCT and harvest was being done to be advised to tell me to take stronger painkillers and that the pain would subside imeadiately the harvest commenced and to think of the outcome being more pain usually means more stem cells to collect!!!!! )
I was able to go back home, not much sleep the next two nights, the other lady I met was kept in hospital the two days prior to her harvest, I suppose it depends on the pain threshold of each individual.
Could I have worked? No! But once the harvest was started all the pain subsided, luckily for me enough for two transplants and in one day, but it could have taken two days they advised me.
I was at the London info day held in London and spoke to a lady who had her harvest with the newer machine and her harvest went very quickly and enough for two transplants in the one day, when I had my harvested in Feb 2012 they showed us the new machine but the staff had not yet had the training so they could only look and get excited about the prospect of using it !!
I would imagine all are using the new machines by this time.
Anyway good luck with your harvest and SCT
Babs
Hi Eve,
We attended the info day yesterday and one of the speakers said that memory loss and some confusion can be attributed to myeloma, it was a full day with lot to listen to and take in but very good. Definately the most people we have ever seen or met with myeloma, I recommend everyone goes to one if they are able.
Only got to actually speak to a few fellow sufferers but those we did were similar to me in respect of bone damage and with my type of myeloma, it also became clear that a lot of us are confused and still learning about our condition, even people who have had it for many years!
See you soon I expect.
Love Babs
Hi Lolly and Steve,
now you have the blue badge it will be very useful if you need to drive to Kings within the 100 days after SCT checks, we found that with the blue badge you can park any where in the streets near the hospital and so long as you show it there are no time restraints which is very good considering how long appointments can be sometimes.
good luck getting over the SCT, I had mine there March 2012.
Love Babs
thank you Jean, will do .
Babs
Hi Angela,
We used world first for our travel insurance, at first it seemed like no one would insure me and a lot of them asked at what stage was I diagnosed-when I said we are not staged they said they couldn't do anything for me!!! but then someone on here suggested world first,you do have to phone ,it cannot be done over the internet, but they knew all about myeloma and asked all the right questions.
Eve,
we are back at the hospital on the 22nd seeing myeloma consultant for my now 3 monthly check in with him, have been to hospital last month for bloods and the lovely bench jones test and yes parking will be an issue, I am there this week to see another consultant for completely unrelated problem to my myeloma, unfortunately worsened by the long haul flight back from WA, but we had put it on hold till myeloma sorted and now good time to tackle it.
Mavis,Scott and Dick,
My intention was to give hope to the newly diagnosed as I had been given once I found this site, My husband and daughters sometimes tell me off for using this site because sometimes I am in tears after reading it,I do sometimes have feelings of why me!I wish I was still at work as I miss my friends and collegues,I cannot do a lot of the normal things I used to take for granted AND unfortunately I have bone damage which I feel every day and no amount of exercise will make walking ,shopping or standing more comfortable BUT I am lucky to be in remission and as has been said this diagnosis does make you look at life and make you determined to get the most out of life and enjoy every day as best you can.
I have long term goals as most of us do,
Best wishes to you all
Babs
Hi Jo,
Just read your blog, how I wish I was able to do one, you and your husband have done so well coping with your husbands diagnosis let alone your own personal loss of your father and I am sure any one reading your blog will be inspired by it, keep it up.
Babs
Hi Gill,
I too had seen this on face book previosly but watched it again through your link via face book and like Tom laughed all the way through, its good to laugh and thank you for taking time to put it on here.
Babs
Hi Jeff,
I too have suffered the same as you with bone damage and am now 3 inches shorter, it only really effects me in restaurants when sometimes if the chairs are low I look like a small child requiring a booster seat, I then have to look for a higher chair to sit on or move to lower table,also at home I can no longer reach the tall kitchen cupboards, this does cause great amusement to my friends and family – there is a funny side to this dam myeloma!!!
I was told very early on they could operate but like you it would not increase my height and may help with the pain but no guarantee of this, I decided that myeloma in itself is enough to manage and did not see the point of having an operation so decided to just learn to live with the new me, I have also had some physio through my local hospice and Kings hospital after my transplant where they told me the importance of posture, it is not easy to see ourselves but the pain we suffer does make us stoop!!! I now walk with walking stick, use trolleys always in shops and wheelchair when required as cannot walk long distances.
I was offered pain management and eventually a one off course of radiotherapy to possibly help lower and in very
few cases take away the constant pain, I took this chance and luckily for me it worked and I am free of the constant unbearable pain, now I manage my everyday aches and pains with paracetamol and rest!!
By the way I am 55, I was diagnosed aged 53 in July 2011 and had stem cell transplant march 2012 and am currently in remission.
I hope this helps
Babs
Hi John,
I too had very severe back pain at diagnosis,a fractured T11 rib and some bone crumbling making me 3 inches shorter, I was referred to a pain management specialist and eventually referred to a consultant who offered me radiotherapy as a possible help with the pain, it was a one off very high dose and could have 3 outcomes,mostly no help with pain, for few people slight decrease in the pain and in very few cases no pain at all(but for how long this lasts they cannot tell you), well I was in so much pain I took the chance and very luckily for me it took away my constant pain so able to come off the morphine, now I manage aches and pain from walking, standing,moving in and out of bed, long journeys etc with paracetamol, the pain myeloma damaged causes never goes away completely but can be managed.
Unfortunately with myeloma we are never totally free from pain but it can be managed,by the way I still do not hoover or lift anything of any weight, cannot kneel down ,drive any real distances, stand long enough to wash up or cook a meal, makes beds and so am not able to live my old life so no longer work BUT am currently in remission and making the most I can of my life, this site made me see there is life after myeloma diagnosis,
hope this helps,
Babs
Hi Tom,
I have bone grumbles on and off EVERY day,turning over in bed has always been painful and still is, at diagnosis the pain was intollerable and I was not in control as on so much pain relief, so much I was offered one large dose of radiotherapy with the 3 chances, a smaller feeling of pain, no change in the feeling of pain at all or in very few cases no pain at all – BUT no guarantee of how long the pain free period would last. I took the gamble and the constant pain has gone but to this day I daily have pain which I now control with paracetamol and rest. I cannot however stand to do washing up, prepare meals, raise my hands to use high placed air dryers in toilets – (so I always use the disabled ones now), sit for longish periods,(always get up with stiffish back and bone grumbles,) walk without either walking stick, shopping trolley or my trusty wheelchair.
I look very well and not at all disabled so have learnt to get used to the looks I get walking pushing my empty wheelchair and then when I have exhausted myself I have to sit in it and be pushed by my full time carer husband. my consultant and physio's i have been under tell me some exercise is important, this myeloma is so individual and I cannot work, even housework is beyond me, I am only 55 now BUT having decided after reading this site that my life had not actually ended as feared at diagnosis in July 2011, so much so I have this year flown to New York, been caravanning in Cornwall with my hubby accepting my very limited capabilities which are very frustrating and just returned from visiting our youngest daughter in Western Australia, accepting the next two days after flying were painful but worth it.
I feel very grateful for all the support ,treatment and now my husband and I are just making the most of our not forseen early retirement!
Almost forgot – pain worst in the cold, and of course always worried about coughs, colds and falling over for fear of breaking bones!!!
Every day is a gift, onwards and upwards,just 2 of the inspirational thoughts from here,
Babs
Hi Tom,
I plan to attend, wanted to go last year but was not up to it, have paid my dues and am looking forward to it, would be be good to meet up with anyone from this site, both contributors and onlookers alike – perhaps we should arrange some way of picking each other out!!!
Babs
Hi Eve and Slim,
I've not been on here for a while so missed that Slim been in hospital.
We would have seen you normally tomorrow but I have been ill with yet another chest infection and have been so tired and unwell that we made appointment to see Lavinia, she told me to stop taking all trials pills and made appointment to see Dr S. last Friday, He has agreed that the pills were making me ill and effecting my quality of life so has agreed I stop them, so I am now on no medication. due to this I had my appointment for tomorrow cancelled so we are now on different Fridays once again.My next appointment is now 16th August.
I do so hope Slim is better soon, it must be so worrying for you both.
I will not shun you if I bump into you on the sea front, next time we get over I will give you a ring to see you both for a cuppa or ice cream in Deal Beach Parlours.
Take Care
Love Babs xx
Hi Anthony,
Unfortunately the treatment does make you feel quite grotty and the side effects too, however it is doable and necessary in the first line of getting the better of this MM.
As this site proves many of us have come through it and I wish you well with it, my sister is currently undergoing chemo in her fight against ovarian cancer and I go with her as support, the chemo nurses often say how they admire us cancer sufferers who have to put up with the poison they administer, but really we have no choice.
I personally was very ill at the beginning of my journey and had no idea what I was taking, I do remember thinking is the it, am I going to die? and I do remember hating the horrible side effects,having the district nurses in each day to give me daily clexane injections as I was totally immoblile BUT here I am 2 years on after diagnosis, SCT in March 2012, living in full partial remission, Just back from a holiday in New York and being much better than I ever imagined I could be back in July 2011.
It will get better and one day be a past memory as Jean says,
Love Babs x
Hi Pauline.
I started with backpain in Nov 2010 and went straight to my doctor, suffered fractured rib in April 2011 and eventually diagnosed 3rd July 2011 after nearly dying from organ failure the consultant told me after telling me I had cancer but all I heard was that they could make me feel better! I left hospital after weekend of tests and started chemo straight away, I had daily visits from the district nurses, our house became to look just like my late 85 year old mothers disable flat with all my disabled aids I needed then,I was given wheelchair, I could not walk , get to bed , walk up stairs, I thought I was about to die, will this be the end of my life aged just 53!
Well here I am today,most of the aids returned to the loan shop, medically retired as no longer able to work,cannot stand for long,walk too far,still get backache but am able to manage it now with just PARACETAMOL, still need wheelchair but not all the time.
We have just returned from 6 days in New York which I never imagined possible but after finding this site, full of amazine people with MM and their stories of how they manage and what they have still maanaged to do with it, I began to see there is life with MM, NOT LIFE OVER AS I FIRST THOUGHT.
I too was very large in the beggining due to the medication, had received notification of this site but was so ill and my husband not into the internet so I looked MM up on internet too first as did my daughter – beware – it is not really correct and gives the bleakest look for the future, this site is the only place I look now and I have phoned the nurses and they are so helpful and knowledgeable.
MM is very individual and varies in degrees and I found in the beginning I was bitter and kept crying , why was I so disabled by this and others still able to work with it? Why did I have to have a cancer with soooo much pain when others had no pain at all ? Now I have listened to all my new friends on here and now look at life with the attitude that we know we do not have the expected years we all hoped for so look on every day as a bonus and make the most of my time with friends and family, am enjoying my quality time, trying to complete my bucket list, the wheelchair in New York and at the airports turned out to be a real bonus – we had booked disabled assisstance at both airports and it meant we were pushed straight to the front so no queing and so actually made our holiday probably less stressfull and more enjoyable than for others.
I do resent also the difference it has made to our relationship,my husband gave up work to become my full time carer as I could not manage myself, the wheelchair does not allow us to walk together , hold hands and converse with each other, but it is an adjustment that means we can still enjoy life as much as we can.You have already experienced this yourselves and I hope you are able to get help needed by you both to enable you to live your life together to the full.
Now I look normal from the outside, get wierd looks when I am walking pushing the wheelchair (as we still need a little exercise),other times I walk with walking stick, some times without,depends how much walking and where I am going, I lost my hair after my SCT and am now sporting a good head of curly dark hair,I just think how much I am saving on perming which many women pay for.
Life is a gift and onwards and upwards are what Andy and Tom say, they are just two of the many inspiring people on this site with MM themselves,
Best wishes to you both
Love Babs
