Hi Liz

Some people have been on Revilimid for years and doing well,so let’s hope Kevin gets a good length of time,I think most of these drugs leave patients prone to infections as they batter all the cells not just the Cancer cells.

Well Slim has started second cycle,from now on it will be every week,he is holding on well,tired and all the usual…[Read more]

Hi

Well I can only think it must vary around the country.

Never had any problems getting any results bloods or diagnostic test,if fact on the odd occasion like this morning doctors have asked me can they photostat results they have not had!!!!.
I do carry a large red file,up to date and in order,so if Slim has an emergency admission,or like…[Read more]

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]

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]

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]

PS great news about your daughter. I don’t suppose you will have time to post with your visitors are with you. So post nice long message after they have gone xxxx

Eve I had chicken pox aged 28 I was delirious and could see spiders climbing up the walls. The pain was unbelievable. When my kids had it as children they were absolutely fine

My daughter was terribly ill when she caught measles and was close to being hospitalised but we were told not to have her vaccinated because she suffered from febrile…[Read more]

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]

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]

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]

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 ????

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]

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]

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]

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

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]

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]

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]

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]

Hi

My husband has been on Zometa for 3 years plus Ad Cal ,I can only tell you,he has no side effects at all,he did need a tooth removed,so had it removed. In hospital,as dentist prefer hospitals to deal with it,no problems at all,there are a small percentage of people who have problems,but you have to look at the bigger picture,Myeloma does…[Read more]