tom replied to the topic Happiness- 42 days post SCT! in the forum Treatment 10 years, 8 months ago
Carol I award you an “A” also well done you, it’s great news, and as for your consultant be like me Carol if he is happy am happy.
From one onwards and upwards to another have a great week
Love Tom onwards and upwards xxxx
eve replied to the topic Whoops! 2 in the forum Treatment 10 years, 8 months ago
Hi Andy
38.1 a bit of back pain and they took you in!! Now that is service,not taking any chances with you,!gSF injections as well.all good Andy,then a couple of pints at the local,real ale plenty of iron in it!!!,and to top it up the lovely Dex,all good.
You have now passed muster for the next round!. I call that a good service Andy. No one…[Read more]
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Hi Maureen
Thanks for that, yes I am doing pretty good on it the sleep I think has come back to me and near next to normal pattern so that’s good.
Am sure Ian will cope with the Velcade and it’s good to get away before treatment starts pewee went away before I started treatment all booked I a weekend lol.
Good luck to you two and enjoy your…[Read more]
eve replied to the topic muscle spasms? in the forum General 10 years, 8 months ago
Hi Frances
I take it the doctor Came to that conclusion after MRI,plus full body x ray!!
My husband has had a resent pain in shoulder unable to lift his arm in and out of clothes,did have fully body x ray,no change,told not every pain is MM,since then he has had a MRI Scan that can track new Myeloma,As you can guess the pain was new Myeloma…[Read more]
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Hi every one
I am now on second cycle and just done third week of that cycle and kast week I lost sleep on Monday as normal but after that I could sleep for England ? Fall asleep on sofa wake up and go to bed it was wayyy too easy to sleep, so let’s see how this week falls.
Went to Scunthorpe General today and talked for a few seconds to a couple…[Read more]
eve replied to the topic Taken off treatment in the forum General 10 years, 9 months ago
Ji Jeff
This site is about helping one another,and I know sometimes I come a cross very blunt and straight to the point,but no offence is intended,I can just tell you we have been there so know exactly how you feel,and not to give up!!!!
Lots of people on here have and still do help me,I suppose in many ways I have learnt to ride the roller…[Read more]
eve replied to the topic ROLLER COASTER RIDE in the forum Carers 10 years, 9 months ago
Hi Jean
She is coming the start of NZ Easter break with Kiwi kids,husband arriving on business a couple of weeks late,and yes something to look forward to,the whole family back together again for a short time.
So all good at the moment!!
Sorry to hear about the dreaded shingles!! So so painful even when spots are gone,Slim has been on the anti…[Read more]
eve replied to the topic ROLLER COASTER RIDE in the forum Carers 10 years, 9 months ago
Hi Everyone
Thought as I am on would keep you up to date,
Slim has had his first month of treatment,after being told there was nothing they could do!!
Well we have had a good month,the weather in are little corner of the world has helped,most days out and about,lovely to see the daffodils in bloom,the sunshine helps even thou the south wind is…[Read more]
eve replied to the topic Taken off treatment in the forum General 10 years, 9 months ago
Hi Jeff
I do not know much about your present state to comment on it,feeling if you have been abandoned ,I can understand,your PP are going up,but your tiredness is I would say because of your bloods!!!,even if they have given up on you,you are entitled to have a quality of life plus may be second opinion. I can only tell you my husbands…[Read more]
eve replied to the topic Getting Blood Test Results in the forum General 10 years, 9 months ago
It sounds a bit like a situation that has developed which is not in the best interest of patient or hospital !!!
Instead of possible making the situation a big issue,why not go to the patient service that is in the hospital PALS????
My understanding is you want the blood results that you are entitled to for your own peace of mind ????
eve replied to the topic Feeling pretty alone right now… in the forum Newcomers 10 years, 9 months ago
Hi Everyone
I do not usually look at newcomers postings,mainly because after 3 years being a carer of someone with Myeloma,things have advanced so much concerning treatment,but just reading this post made my realise that the emotional side never changes,but I do think after going through the emotions of shock grief,plus usual problems,things do…[Read more]
eve replied to the topic Clexane versus RIVAROXABAN in the forum General 10 years, 9 months ago
Hi Terry and David
Thank you both for the information,it’s worth making a note of!!,because of the fact of it only lasting 24 hrs in the body,so it,s important that it is taken everyday at the same time,you assume there is no build up of the drug in the body.
Why should it be ok with Velcade but not Revilimid ?????
I also think people assume if…[Read more]
eve replied to the topic Clexane versus RIVAROXABAN in the forum General 10 years, 9 months ago
Hi Terry
Well you have answered my question!!!!
Slim was on CDR,when he was prescribed RIVAROXABAN ,he only had it for 2 months,and 2 cycles each time not being able to complete the cycle because,of sepsis and very low blood readings,platelets and neuts hit rock bottom.( looking back an awful time ).
He had to stop chemo completely,and after 2…[Read more]
eve replied to the topic continuous use of Dex in the forum General 10 years, 9 months ago
You can vary the Dex ,take half dose or even taper off it slowly. There are other things you can take in the steroid department if it just Dex that does not agree with you,and I am surprised this has not been suggested by consultant !!!
As for alcohol !!!! Well need I say more,odd wine or beer yes,spirits,never.Eve
eve replied to the topic Clexane versus RIVAROXABAN in the forum General 10 years, 9 months ago
Hi Terry
My husband has been on Claxane off and on for a number of years,and seeing the consultant after he had a blockage in the artery,and had to up had to up his dose from 40 to 100,he made a remark about being fed up being a pin cushion!!!
The consultant said he could have RIVAROXABAN but had to make sure he took it daily as it worked only…[Read more]
tom replied to the topic SCT question in the forum Treatment 10 years, 9 months ago
Hi myelomaminx
When you had your growth injections did you get pain in ribs/back and or hips ? Because when I had mine done in 2009 I had bad Iain for three days/nights just prior to the day of collection.
Just wondered, and good luck with the next time
Tom onwards and upwards xx
eve replied to the topic Holiday in the forum General 10 years, 9 months ago
Hi Maureen
We will not know for some time if treatment is working,but in general is bloods and health are a lot better,plus he has just had a chest infection,but held his own with antibiotics ,so to me that is a measure of how his immune system is a lot better. His pain levels are better,you can tell just by his body movements,so I do think he is…[Read more]
eve replied to the topic Holiday in the forum General 10 years, 9 months ago
Hi Maureen
Make sure you get away for a holiday before Ian starts treatment??
I often wonder about haematology consultants,how much they keep up with things,I suppose we are lucky to have Myeloma UK because I get a lot of information from the news letters that they post also follow them on face book,so it saves me often looking for info,and we…[Read more]
tom replied to the topic SCT question in the forum Treatment 10 years, 9 months ago
Hi myelomaminx (love the name ha ha)
So sorry you never got any let alone enough, I am sure some one on thus site was the same as you and it all worked out well.
Good luck with ur and hope next time is better
Tom onwards and upwards xx
eve replied to the topic Holiday in the forum General 10 years, 9 months ago
Hi Maureen
Glad to See you managed not just a break,but a posh one lol.
Glad to see you posting again Eva,you must feel down not being in your own home,B&B plus hospital,is no joke,I suppose it’s the only way forward,will you go straight into another SCT from treatment!!!!,which hospital are you at in London!!!
I hope you both Ian and Eva find…[Read more]