Hi Ali
Tell your mum not to rub the site after injection,this is what causes the bruising,try not to touch it,hold the tummy firm,and make sure ,to use alternative sides.
Slim has very little flesh,but never had bruising only the flesh getting a bit hard.
Polly I know it,s hard,I make a better carer than patient,I know all the theory but I am a bit of a coward when it comes to my own body.It is easy for me,but it does help to learn as much as you can.Love Eve
Hi Polly
Well my advice is to go on the trials,you will be randomised for CDT or CDR first one is standed treatment second one is a new version,both available as first treatments.It is the Velcade which is second line treatment that is important,Velcade at the moment is second line treatment that is still under trials,so could be with drawn,but through trials is proving to be a good drug against Myeloma,so in the future it might be accepted as a first treatment drug.But that is all in the future.
Clexane is the injection used for thinning the blood to prevent blood clots,it does depend on your consultant,my personal believe is Clexane or another blood thinner should be the norm,but some wait until there are signs of blood clots.My husband injected himself for 8 months after having mass blood clots on his lungs,my believe is this should never have got to this stage if he had been having treatment to thin his blood.
Having gone through the treatment,and looking back,My husband and I think thinners and antibiotics should automatically run along side mm treatment,as infections and blood clots can do so much extra damage,there are some trials going on with antibiotics and MM treatment which must be a good thing.
Welcome to the site,let us know how you get on,many people sail through the treatment,lets hope you do not have any side effects.Eve
Hi Kevin
Just come on to say good luck with your SCT,it is hard going but like most things you will feel better just takes some time.Eve
Hi Lorna
Hope you are feeling more up than down,this illness brings you down to earth,big time,but saying that it does make you appreciate what you have,in your case how lucky you are to find the man you love.
Some one once said to me life is like a card game,you have been dealt your hand and it is how you play it that counts.
I feel down at times and have to give myself a kick up the backside,some times I wish I could be one of these people that went through life with no problems,the last 2 years have been bad,Slim with Myeloma nearly loosing him,my grandson dying,and now wondering what this year will bring.:-S although no one would choose to go through this,I do believe some good has to be found in the last 2 years.I am a non believer so it is not religion that gives me this strength,I suppose its looking for the good that comes out of bad things,this illness gives you time to appreciate what you have,and in many ways time is the good thing about it,Love Eve
Hi Pat
Glad you managed to sought you pain out,pain can drag you down,and it is the last thing you need.Tramadol is effective but again not a slow release,your own doctor will not like you having a controlled drug,plus they are addictive so watch out for side effects.
Going once a week will take away some of the strain,when Slim was very ill and off treatment the consultant wanted him back on as soon as possible,I did have my doubts,but he did cope with it.
Slim had swelling and pain in feet,I use to give his feet a massage with coco butter cream,some one recommended it,and it did work,helped with swelling and his circulation.Worth a try.
Jo I bought tights and I do look like a round ball on sticks,but I don,t care they are comfortable and I am behaving disgracefully .Love Eve
Hi Everyone
I do not think I ever felt angry with are situation,sorry we had put off doing many things,wish we had not put them off to a later date,but that,s life,you take your chances.
In fact I felt lucky,we do not have much money but we have not waited for retirement to do lots of things,I just looked at people,s lives around me.So anger has never come into it,I was angry with my doctor,because he did not do his job properly,but that,s another story.
I take the attitude there is always someone who is worst of than you.If I ever feel down,I consider all the people I know who have had far worse things in there life,it helps me.Eve
Hi Keith
When you feel well the last thing you want to do is spend time in hospital,it was always a fight to get Slim there when I thought he needed to be checked over,you tend to think you know what is best,but I know from Slim there is a fine line between being well and being confused and he crossed it many a time.
The platelets below 20 is considered to need them,it is the neuts that can drop so drastically,I would agree with Dai,all these conversations nurse to doctor to patient,all third hand,dangerous.If you were an in patient you would be hooked up to drips by now.Love Eve
Hi Helen
Well you must be feeling rotten ,I asked should Slim have all his childhood injections again,and was told,only needed them if he had donor cells,sounds if there might be a case for having boosters.
At least you now know what it is,which must give you some peace of mind,are you having to have a lot of time off work,this cannot go down well,I know the time limits they give for feeling ok after SCT,but in Slims case I cannot see him ever being the same,but as the months roll on,he does get a little bit better every day,but he does not go out to work!!!!.
Hope things pick up soon.Love Eve
Hi Sarah Jane
It,s all a bit mind blowing at first,and naturally you are worried about your child.Try to take one day at a time,and get help to sought out your problems,the easiest way to do it,is contact the Mac Millan Nurses.
They can help you with all forms,get things in place now because you will not feel like doing it later,blue badge,and forms to claim money,do not wait until you cannot manage.
I can only say,you will get through this,because you have no choice,you have a child to bring up,and this will be your strength.
My husband is on the trials CDT,Velcade,then SCT and remission,a few blips on the way,this started 2 years ago,and it has taken this time to get are lives back,so do not expect a quick fix.One day at a time,listen to your body,learn all you can and come on here and ask questions.
The people on this forum can help you,the drugs you are taking effect people differently ,you might be lucky and have few side effects and sail through the treatment,lots do.Good Luck Eve
Hi Charlie and Mary
Glad to hear Charlie,s at home,not a bad thing to start on Velcade. I think it it is about time they used it as a first line drug,rather than second.
We all know everyone is different with all the drugs ,so I can only speak for Slim,Velcade worked,less side effects plus felt much better in himself,unable to sleep much,but that could have been the combination of drugs.
Worst thing about Velcade was having to have blood taken every time then Velcade dose never changed always 2.3 twice a week not subcut,tried 4 day routine day before for blood then Velcade next day,tried having blood and Velcade same day spent hours in the hospital.
Some hospitals have a better system than our,s,but it drives you mad just waiting around for hours.
Some hospitals actually ,consider the patient and organise themselves,hope you are lucky.As for the Velcade i can only say it worked for Slim and he has had SCT and is in full remission and getting stronger by the day.
Mary leave Stan to do what he feels he can do,just give him a gently reminder,that if he is not careful he will end up in hospital,only thing I would say is do not let him drive,the drugs they are on are not compatible with driving. Eve
Hi Pat
Take this trip to hospital as a big learning curve,it is such a worry to a carer when temp goes up and BP goes down,steroids mask infections,so are very hard to spot,I now go on Slims BP,when he had pneumonia his BP went right down had him in A&E,and even they failed to spot it,although I pointed out his BP which was 60 over 45,Pat next time it might not be just a chest infection,first sign of temp and BP,Get to A&E.
Also you should not have any pain,if this carries on ask to see the pain management doctor,Slim takes Oxycontin as he has a lot of bone pain,pain is what will drag you down and also make you feel depressed,if taking a pill gives you a better quality of life in the grand scheme of things why suffer with pain as well.I take the attitude different doctors for different courses,you need a slow release pain killer not co-codamol,that will end up making you fuzzy and feeling dopey with the pain coming back after a few hours and needing more,a slow release tablet will last 12 hrs.
Hope you are feeling better soon. Love Eve
Hi Dai
Well as you know we have all been worried about you,this forum just did not seem the same with out you,Tom in his wisdom managed to get info on you,clever block that he is,when someone goes missing who usually post,it becomes a puzzle why they have not posted,do they need a break!!! are they ill!!! or worst still pushing up the daisies!!!!,so it is a relieve that you are still here,loosing outdoor Paul of all people was enough.
On that note it is so wrong that,we are still loosing people with infections,I am so aware of Slims Neuts and plates,its like an obsession ,always check when blood taken.
I can sympathise with your treatment,very,very wrong,but as you know Slims been there,but the wife from hell was fighting his corner,you do not make yourself popular.I know there are consultations patients and staff meetings going on at present to improve the service.so worth while complaining,staff shortages are managers responsibility,and if the patients complain it has more weight than staff complaining.So pen to paper Dai,improve that service for the next person in line.
Get yourself fit for the wedding and have a lovely time,and make sure you keep all doors open,Janet will be next in hospital at this rate,its very hard to sleep or relax when you are a carer,so make her job a bit easier.
Both of you have a wonderful time Love Eve
Hi Mike and Girlfriend
Another welcome to this exclusive site,were everybody is a patient,carer or friend,and we try to help each other out as much as possible,were here for you when you want to rant or need support.We have all been there before you and some are still here now.
Everything is do able,you must learn as much as you can,we are 2 years on from the start,I say we although it is my husband with myeloma,but it has been my journey as well,just different.
I noticed in your post about your leg have you had it checked out????for DVT,a good way to tell is measure both legs.if different measurements,pain swelling hot,worth checking,better save than sorry.
Mike I can only tell yes it does get you down,make plans,it takes a long time and you will get p—d off,but plan something everyday,you are not alone,good advice about going to info day,many people survive for lots of years,attitude of mind helps stay positive,plan ahead,reach your goals.Eve
Hi Etta
Treatments Zolinza or Lenalidomide or no treatment randomised,Slim go t no treatment.They are testing the new drugs as a maintenance treatment. Zolinza has been doing well treating other cancers and it is a prohibiter,no results are available as a maintenance drug as this is first time,Lenalidomide has been in use for some time and there are some results in.Helen can tell you more about them or if you go to Treatment site and look at my posting ZOLINZA there is information from Helen on there.
Hope this is helpful Eve
Dear David
I think you have cracked it,something for everyone,just watch your back when throwing those balls,have a lovely anniversary,love Eve
