This topic contains 25 replies, has 18 voices, and was last updated by 
nickinoo 13 years, 2 months ago.
Hi everyone Close your eyes and listen very carefully——that is the sound of me using every swear word known to man !!!As I am not allowed to write them down you will have to imagine it ! Just had a call from UCH my mri last week shows another tumour up near my ribs As it appears to be very deep I have to have a ct scan next week To say I am fed up is the understatement of the year But it shows that our instincts are sound When I had that spell of unbearable pain a little while ago it was radiating towards and from my ribs on the right side and luckily I asked them to make sure the mri checked that area So I am going to try and regain some positivity and be thankful they have found the wretched thing before it spread any further But I was so looking forward to my Revlimid holiday and the thought of yet more heavy treatment is not very appealing Oh well maybe just another five minutes of bad language, good job no-one else at home or they would have me carted off to the funny farm !! love Bridget x
Bridget you swear as much as you like. You know your own body and like you said its a good job that you asked them to check. I really hope things start to go right for you soon, its just not fair.
You take care
Gina xx
Oh Bridget
Im so sorry to hear this news what a bug ger . and the rest.
Apparently its a little knows scientific fact that swearing is effective. what at i cant remember due to altziemers !
No one knows your body better than you and your instincts are correct so make sure you always listen to them.
i dont know what the plan will be for this maybe a blast of a ray gun of some kind will murder the blighter.
Bad news is always responsible for 'downers' in our house and we have had too many of those of late, so wont share it with you all.
The sorrow of friends on here has had a lasting effect on me, so its important to stay positive and know you have a wonderful team looking after you so hopefully they can get this under control and you can get on with your interupted life again. Best wishes
Love Min
dear Bridget
Stay stong and keep swearing.
With love sarah xx
Hi Bridget,
I am angry for you… angry with your tumour for forming just when you seemed to be finding a little breathing space… angry because it is one step froward, two steps back… but not for long I am sure.
You say the tumour is deep… I suppose they now have to identify if the tumour is myeloma related or a secondary, unrelated type. As you know, when I relapsed in the spring, confirmed in April. I was hoping for a maintenance therapy to hold back the rise of my kappa light chains but they found a tumour on my sternum which 'complicated' my condition because it was in a 'very difficult' area to treat… I was told to hope that it was myeloma related because the preferred treatment, Velcade, could possibly take care of the tumour.
I was fortunate, it was myeloma related and the tumour, which was growing like topsy, disappeared during the first 2 Cycles of treatment. I do hope that your tumour is myeloma related and easier to treat under existing regimes rather than start on a second course of treatment. Saying that, I am speaking because I am angry for you… it may be that the tumour can be treated with radiotherapy relatively easily… if there is such a thing. I just want it dealt with and you back on course with as little disruption to your life as possible.
Your tumour, my rant… but I'll stay angry with your tumour until it gives up and goes away.
Dai.
Hi Bridget
Instincts are a wonderful thing,and we all need to listen to them,as you say you know your body best,better to deal with it,!!!.
Min i thought you have been too quiet,I know what you mean about so much bad news,but that,s what people are here for to help to laugh and cry with you,you yourself made me realise,there is someone out there ahead of you who is going through your pain or your joy,and it does help.
Sarah,so so glad to see your post,even if it,s a quick peek.
love to you all Eve
Hi Bridget
So very sorry to read of your rotten news. You are most certainly allowed a good long rant because I know having read your posts over recent months that the minute your short lived (by my standards) rant is over you will brace up, buckle down or whatever expression suits and once again face whatever you have to with determination and dignity.
Sorry too because being on Revlimid myself I can well understand how much you were looking forward to a little rest from it just to gather your forces a little.
Lots of luck for next week.
Love Carol xxxx
Thankyou what would I do without my lovely cyber friends to keep me going Sarah thank you so much for your post I have been thinking of you this week . Dai it is definitely a myeloma tumour , the mri showed an increase in myeloma apart from the tumour . I think the plan may be radiotherapy , hence the ct scan to get precise measurements, possibly followed by who knows what!! It occured to me that I will probably be taken off Revlinid as it has failed so I am unsure what treatment is next till clinic next week At least I know that radiotherapy is very good at getting rid of tumours as the last one disappeared quite easily , fingers crossed this one behaves as well!! I hope you all have a good day , its gloomy and raining here in lovely Beds!! love to you all Bridget x ps I have stopped cursing and have reverted to being my sweet little self!!Haha as if !! x
Hi Bridget
I saw your post on FB so thought I should come back to this site to check up on you!! so, so sorry to hear your news but if anyone has the determination to beat this ~ you have! It is strange how our initial reactions of fear and upset when we are first diagnosed change to anger and frustration when we relapse – last time I came out of the hospital in a cloud of 'blue', cussing and swearing for all I was worth "bl**dy myeloma; I haven't got time for this!" was all I could think of all the way home!!!
keep fighting, you will get through this bout of total inconvenience!
Love & (((((((hugs)))))) ~ Nettie
hello bridget
swear and cry as much as you would like this b*****stared disease gets you on the edge of madness you where right about the pain you said it was something different this time again.Have you spoken to them about thalidomide you didnt have it first time round look at Peters results it seems to have worked for him when the other drugs failed
Much love and (((((hugs))))
jO X
Hi Bridget,
I am glad that the tumour is myeloma related.. and that the radiotherapy is lined up to nuke it. I am however sorry that this means the end of Revlimid as a frontline treatment… as Jo says, perhaps thalidomide on its own or in a combination as a maintenance therapy might be the way forward.
The Americans, led by Dr. Berensen (?) swear by maintenance therapies (he lectures the experts and he is anti-transplants)… his mantra is 'less is more' and advises on finding the right combination of low dose drug treatments. It is the way that I have leant since first studying the possibilities of frontline treatments for MM… I only wish that I had insisted (as was my wont) on seeing my CDT through to its conclusion instead of jumping on the SCT wagon which ultimately failed me.
I hope that your radiotherapy treatment is quick and uneventful and that a workable maintenance theraapy can be found for you soon.
Much love,
Dai.
Hi Nettie, Jo and Dai I dont know for sure what comes next as clinic isnt until next week , hopefully I will have had the ct scan by then . Jo its funny but I had completely forgotten about Thalidomide and as I havent had it before it may well be my next treatment either on its own or with something else . I am assuming that as Revlimid hasnt worked then I wont be able to have it again, thats a question for next week Dai it seems there is a lot of new myeloma activity and whilst the radiotherapy should nuke the tumour I think my consultant may want to hit the rest hard initially Dr Yong is very good and for the most part her strategies have worked well in the past so I will see what she says on Thursday ,but I will bring up maintenance therapy if she doesnt. Nettie you are so right about the anger , in the beginning its all too frightening but as time goes on you resent myeloma intruding on your life Still anger is good if you channel it I am told. How are you Nettie? do envy your lovely way of life especially eating fish that you caught yourself!! My list of queries for next week is getting longer by the minute , which is good because I normally forget to write it!! Well The Hairy Grandson has just arrived for the weekend so I wont have time to dwell on things At the moment he is running around looking for a shoe or something else to run off with so that I will chase him, who needs a gym for excercise!!My daughter has told me the best way to get him in from the garden now is to shout Sausages, if the neighbours had doubts about my sanity before they wont now ! love to you all Bridget x
Glad to see you have not lost your wonderful sense of humour ~ I am sure the 'hairy grandson' will help!! good luck for next week and as always, keep us posted. Love Nettie xx
Dear Briget
I have been getting a new computer so have been off line for a couple of days. I'm devastated to hear your news and angry for you. You have already had such a difficult year which you have coped with bravely while continuing to encourage others.
One thing, you are a fighter and it is good that you have got a medical team you have confidence in. I will pray they make some good decisions for you.
Glad Dai mentioned other possibilities to Revlimid. I feel certain you are going to get through this very rough period. I will be rooting for you and praying. God must be getting used to me getting angry with him on behalf of my friends.
Much love.
Mavis xxx
Oh lovely Bridget,
I'm so sorry to hear that your instincts were right…..life is so unfair and you so don't deserve this.But as always, you are handling it with an inspirational grace and humour and that is a lesson to all of us.
Good luck with your appt next week – I hope they get a great concoction that beats the b*****d!!!
Lots of love
Debs
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