[eveParticipant]

Thanks Sharon

Will look out for that,has his MRI scan on Sunday,With Slim its very hard to tell how much pain he is in,never one to admit to pain just the fact he takes Oxycodone hydrochloride and cannot do without it,and still is in pain is enough for me.Never touched a pain kill in all his life,even when he had a hip replacement,,broken ribs and arm,.So just to take a tablet means a lot of pain.
He asked me the other day why they are not interested about the pain in his chest????but it is the way he comes over about it!!! ,I have a had to press for scan!!!
Very hard,to handle,thats why i have no chose but to go with him,if they ask him how he is,answers Fine!!!
He has gone from a wheelchair to sticks and is now walking without them.but the more he does,the pain increases,the tumour is situated t8 to t10,and I know there not keen to do radiotherapy ,given the position.
I have some nursing experience years ago,and one daughter is a radiography ,and other daughter has become an self styled expert because of her son having cp.,plus we have lots of medical people in family,but even with all this,when it comes to Myeloma,it,s a massive learning curve,so I am grateful for your help. eve

[eveParticipant]

Hi Sharon
They are still telling me PET scan will not tell them what is going on in the bones!!!They have decided bone marrow after 4 cycles,so we will not have result when we see consultant on 14th,will only have MRI results.:-S

Read a piece saying fish oil has been tested and found too hinder some chemo drugs,at the moment testing on mice.Still trying to find out,if Flu jab is advised with people on chemo.
Eve

[brochoParticipant]

Hi Eve and Sharon I was just wondering if Slim has had a full skeletal survey and bone scan Eve? Mine was done when first diagnosed to give them a base-line to gauge existing damage. In my case the damage is so extensive there are only two places free of myeloma, my left forearm and left thigh!!Everywhere else has more holes than any pepper pot around! As for the PET scans I though they were supposed to be the best for giving a good overall picture , tissue and bone , but cant remember where I read it sorry Good luck hope you get some answers love Bridget x ps second time I have written this the first was a few hours ago and I think it disappeared when I dozed off!!Such is the joy of life withh mm , haha

[eveParticipant]

Hi Bridget
How did your chemo go? forgot to tell you tried to contact you on face book,but must have got the wrong Bridget,as never got a reply.:-/

Slim had the works,went for consultants appointment found himself on a drip within 10 mins,and in bed 30 min later did the lot over a week end,skeletal survey,MRI,and bone marrow,except for the hiccup with 22 days in hospital,with septic pneumonia,finished CDT and looked like plateaued ,then did bone marrow again and found out it had increased to 80% in marrow!!!.

PET scans are new ground for me,only know they are expensive but my hospital has one.
It is the pain in his chest that is more of a concern for Slim,it has been there from the start,he expected it to go with treatment but it never did,part of the problem,is the way he tells them,it,s as if it,s not that important!!

Just had another MRI scan,and my own Doctor arranged CAT scan in case it was his lungs,because with the pneumonia there were no signs no cough just feeling unwell and off food and drink,that,s why I am so careful now.

today,slight cough pain in chest,vomited all over carpet,doing ops every hour.watch this space think its going to be hospital job,going tomorrow for bloods and Velcade.

Good to see you in great spirit love Eve

[eveParticipant]

HI Sharon
You have not been on site for a while is ever thing ok i know you do not post much,but you must have finished Velcade now.How are things going:-S?

Slim on 3 cycle and a bit in Limbo as,no results coming through as decided bone marrow to be taken after 4 cycle.

Slim has not got the pain in his chest any more,and except for the odd blip,is doing ok,having new floor after Slim decorated the last one:-P decided it will have to be laminated easier to clean.

I know we are playing the waiting game,but what about you!!!!
Dai has just had good news!!!
Hope your not keeping,you news to yourself,because its not what you expected;-)
worried about you,been waiting for you to post.Love Eve

[SharonGParticipant]

Hi Eve
Sorry I haven't been on the site for a while, I do look in, but don't post very often :-0 . I also wasn't very well last week had temperature ,sore throat and lost my voice! So my velcade was delayed for another week so hopefully will have my last one tomorrow!!!!! Will be so relieved as I am so tired, even 20mgs of dex dosen't keep me awake any more!

I am glad to hear that Slim is feeling better and the pain in his chest has eased, you made me smile about him decorating the carpet!!!!

Love Sharon x

[eveParticipant]

Hi
Good to know you are ok,hope everything goes well on the last cycle.Let us know how you get on 🙂
My beautiful white carpet did not enjoy Slim being sick on it,have used bleach but still looks iffy,helped make my mind up,so hall and lounge will be replaced with laminated looking like oak.
Could do without this,but when you are stuck in looking at it,it gets on your nerves:-P
In limbo now,finding it very hard,will have to wait for end of 4 cycle,trying my best to be positive, I do not make good company at the moment,so trying to keep busy,hoping to get away while floors are being done.
Eve

[eveParticipant]

Hi Sharon
Its now November when do you have PET scan and results.
Slim had bmb expect results in next 10 days 1/2 way mark for Slim.
Eve

[Author]

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