[eveParticipant]

Hi Dick

That’s a good one,cannot even blame the booze as it’s morning,!!!!

I use an I pad all the time now,and know it looks like a slip of the finger because F and D are next to each other,but I honestly believe it’s predictive rather then slip of the finger,I am so lazy I do not read it again unless it,s red lined for unknown word.

I bet Maureen uses a I Pad as well!!!
But if it makes people smile,it makes my day. Love Eve

[eveParticipant]

Hi Andy

Did you notice it’s all women that turned out as pirates,I think it was Maureen and the sex bit???? Or some are not posting there own thread but when they come on to comment on some one else’s post,it’s so nice to here from them.

As Slims not much into a TV ,and his memory is not great on Chemo,so reading is out,except for papers,we have rediscovered jigsaws,so Dex nights become jigsaw nights.

Hope you have a good holiday in the lakes years since we have been there,off to take the fog down to the beach,gone from tea shirt weather,to hat and coats in the south East.Eve

[eveParticipant]

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 not sleeping,but you can see from his movements he has less pain,so all good!!

Daughter coming home 22 April,so something to look forward too.
I am now driving all vehicles,so took the Motorhome for a run,and stopped by the beach,beautiful day,nice breakfast ,read the papers and then walked the dog,had to come home for the Rugby!!!!,just enjoying the simple things in life,and locking the Myeloma in the cupboard,just got to find a big padlock. Enjoy the sunshine love Eve

[eveParticipant]

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 today local hospital did not have a copy of MRI report!!!
It’s peace of mind for the patient,plus knowing the doctor you are dealing with is fully informed.
I do think there must be a breakdown in communications!!! Mistakes do happen,we had a slight mix up last week,so communication is so important without blame for a good relationship.Eve

[eveParticipant]

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 likes going in,but staying on top of things before they develop gives you a better quality of life.

Recorded One Flew Over The Cuckoos Nest,have not seen it for years,so looking forward to watching it,with my cuppa and toast,might make me appreciate visits to the hospital with Slim. Love Eve

[eveParticipant]

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 tracking.
Worth being persistent even if it’s just for your own peace of mind.

[eveParticipant]

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 coaster with its highs and lows,so the journey is not scary,we know were this ride is going,just trying to make it last as long as possible.

So you make sure when you feeling down ,come on here!! Or you have bad news, I would ask for a second opinion,???
You also say about bad news with your daughter!!! We know life hits us hard blows sometimes,we cannot change this,we lost are 16 year old grandson 2 years ago,but you pick up the pieces for the sake of the rest of the family,and life does gone on,we just do different things,I have forgotten what hobbies are Jeff.
Anyway glad you are feeling more positive and hope my words were not to direct,.Eve

[eveParticipant]

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 viral treatment even when not on Chemo,his immune systems not great,plus has not had chickenpox,so took no chances. I had it a few years ago,and the coward I am I found it so painful!!!

He needs a holiday away from stress,treat him to a cruise Jean .love Eve

[eveParticipant]

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 bracing,very unusual a south wind this time of year,but we are making the most of it.
Managing are once a week visits to the Marsden,So all good,bloods in general have improved,holding his own,so life is GOOD!!!!!, Eve

[eveParticipant]

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 story,and hope it gives you some hope.
First may I say,you could take some tablets or even have an injection that would calm you before MRI,plus what does the BMB say.!!!!!
My husband is 69
My husband came off Chemo last year through sepsis and low bloods,wait and see policy because he is non Secretor ,BMB done,again wait and see policy,not a happy bunny but excepted it. Appointment in new year,Myeloma up to 25 to35 in bones but patchy.bloods not recovering still platelets often under 10 HB going down to 8 on occasions,nuets just holding around about 1.
Then we were informed there was nothing more they could do,they would continue to support him with bloods and platelets!!!, I expected them to be able to do something,and yes we felt they sent him home to die!!!!.

Moving on 2 months,we now go to another hospital he is being treated,he has a better quality of life and he has improved in his general condition,his bloods have improved,his everyday condition has improved,less pain as well.
We understand fully that this might not work,plus he could die of an infection,but at the end of the day his attitude is I am not ready to die.
We have a daughter coming home from NZ,we are hoping to make the best of the summer small trips away in are Motorhome,lots of things to live for.

So never give up hope,and enjoy everyday.Eve

• This reply was modified 10 years, 8 months ago by  eve.

[eveParticipant]

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 ????

[eveParticipant]

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 change!!!!,because the people that are immediately involved have to adjust ,no choice!!! The patient has to concentrate on themselves,and the carer has to come to terms that there own life is on hold,!!!! That is the practical side of Myeloma.
Myeloma is a big emotional learning curve,with lots of highs and lows,it’s not something that anyone would choose,but you can learn a lot about yourself,appreciate small things,and find a peace and contentment,and live for now.

The only advice I could give,find out what is important to you and make the most of each day. Eve

[eveParticipant]

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 you have low platelets you can not have a DVT or artery blockage,which is wrong,Slims had a couple of platelet rashes as well,they also have to be checked out just in case they are infections.
Touch wood not had to go to A&E since last summer,whayyyyyyy it’s great spending hours in A&E before ward is awful they do not even have a drinking tap in A&E,they keep a jug of water in there own fridge.so you have to buy water.different at other hospital.

Thanks again for info. Eve

[eveParticipant]

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 BMB and months of waiting for bloods to rise,was eventually told they could do no more,had a second opinion and has started treatment again..

Have you any information on why it’s not recommended with Revilimid !!!
Stick to injections!!!! Eve

[eveParticipant]

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

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