[eveParticipant]

Hi Mari

Slims on Waddington,had to change wards as beds have to be seen to be filled with bodies all about filling beds these days,after 3 hour journey made him sit round for 2hours,as you can imagine I lost the plot a little bit,it worked,next day was moved to have chemo,only given half does as kidney function not good,after not having much liquid for 5 hours it was understandably .

Today will have harvest about 5o clock,doing very well,temp went up slightly and straight on to antibiotics ,with Ezra liquids looks better than he has done for sometime,the last couple of weeks have taken there toll on the whole family.
My daughter and son in law are doing the best to hold things together as they have becky and Katie to care for,and I am parked on there door step.I get the train from Otford to Denmark Hill,she insist on cooking for me,when she has enough to contend with .
Time for harvest so I will stop now.Eve

[eveParticipant]

Hi Gill So sorry about the news,can understand how angry you must both feel, Slim says if this SCT does not work he will not have any more as 6 months not being able to travel abroad and no guarantees it will work is a lot out of life,We are travelling to NZ once this is over,his way of looking at it,does it matter .!!!!!

Are there any. More trials available ? Or are you both making your own decisions to enjoy what time you have. France in the summer seems a good idea have always loved the fields of sunflowers and lavender.

Slims in Waddington at Kings having harvest back today,I have to say the nUrsing staff are on the ball here,so very pleased. My best wishes to you both. Love Eve

[eveParticipant]

Hi Min
Lovely to hear from you,glad to see you back,you were missed:-(

I have watched Reiki being done,and for the life of me i do not understand what they do,but it did work for Matty,plus a friend of my daughter who,s husband died age 38 years,it has a very calming effect,so I think bring it on,if it helps.
Stress has a terrible effect on the body,and the in ability to relax causes all sorts of problems.
Keep telling your self it will get better:-) 🙂 🙂 love Eve

[eveParticipant]

Hi Mari
Did Steve have enough stem cells or will they do another harvest!!!
Rosie my husband Slim is 68 this year and is having his first SCT starting Sunday,i think it,s not so much age,it,s how fit you are,because Slim had pneumonia which left scaring on his lungs,we thought they would say no,but they have said he is fit enough.They did decide not to give him full does chemo,because his kidney readings were out.

Mari when you find out about the new protocol ,I will be interested too.Eve

[eveParticipant]

Hi Gail
I think the 3 cycle was the hardest for Slim,mainly because he was ill and we just thought it was the effect of the chemo,because he did not have a temperature, it was not picked up by our doctor or A&E,he had pneumonia and the steroids masked the infection.
So this is were you have to be firm if you think he is ill make sure they listen to you,!!!!!
It is a big learning curve,but things will get better,if you are not happy with the treatment,speak up,tell them your worries,they will take it on board.I make sure I get all test result to compare.
Hope thing go well next week.Eve

[eveParticipant]

Hi Peggy
BMB are not the nicest thing to have,but they will show what is going on with your bone marrow,because some times the kappa light chain readings do not reflect what is going on in the bone marrow.

Your BP reacts to your condition,it can go up and down if your nerves or upset,so take deep breaths and keep calm,:-P
Myeloma does take over your life and any one close to you,just adjusting your life to drink 3 lt of water a day,takes organizing if you have to go out,but after awhile,,it becomes the norm,and it will be all worth while,if it buys extra time.:-)
Slim starts SCT on Sunday it,s taken a long time to get there,its been a very long journey.Eve

[eveParticipant]

Hi Everyone

Just Looking in,This is what we need,good news,Wendy and David,lets hope we hear lots more.love Eve

[eveParticipant]

Hi Gail

Reading your post,it could me writing it,only the year would change to January 2011.So you are not alone,you have joined many other people on this journey,because the carer has no choice,and some times is forgotten,because everyone worries about the person who is ill.

I use to worry about my husband,being very confused,plus lots of food being refused mainly because there taste can change,from asking for something,then tasting it.There world has suddenly got very small,and things that he would have not bothered about before become more intense,plus the tablets can cause anxiety,in time you will get use to it,and you will be able to sit down with him and explain your worries.

My husband is 67 and use to be very fit,he has aged plus lost a lot of weight and 5 inches in height.I will not get back the man he was,but he is alive and doing fairly well.He goes in for SCT on Sunday,so we are very grateful for this extra time.
You do not say were you are,but i am sure Ellen could fix you up with some one near you,it does help as only people going through this understand,so I would either tell people on here were you are,or ring Ellen.Eve

[eveParticipant]

Hi Susan
Thank you for posting about Sharon,i have been trying to find out how Sharon was as she was on Velcade the same as Slim,and i was wondering was it working for her,she helped me a lot with information.
Thanks again for posting,I wish her husband and young family all the best,Eve

[eveParticipant]

Hi All

Thank you all for your kindness it has helped over the last few days,as we have found it difficult even to mention it.So this did help.

We are going to have a celebration of Matty,s life on the 8th of May My daughter from NZ has come home,so although it is a time of sadness,there is a great deal of love and happiness around us as well.
It is my daughter Ruth,Rob Becky and Katie that we have to be there for,Matty was a much loved boy.
Slim,s new date for sct is the 25 of this month,
Please all keep well.Love Eve

[eveParticipant]

Hi Lexi

I am up at this terrible hour,so i thought I would reply to your posting.

First may I welcome you,we are usually a happy bunch on here,who have either got Myeloma or are carers.

May i say,Smouldering Myeloma may never go into Myeloma,also some people have it for many many years,Ted on here is in his eighties and although his health is a little bit under par,does very well.
You need to speak to Ellen to relieve your fears,but i am sure lots of people will reply to you and help you through this difficult time. Eve

[eveParticipant]

Hi Duncan
Sorry for not replying.

You have a lovely dog,it will be a great help to you in your recovery,as you have to take the dog for a walk and this helps.

We are based in Deal Kent,but Slim knows Bovi Sands well based in Torpoint, in 40 and 42 commando units once upon a time
I have some problems not connected with myeloma,so will be absent for awhile please do not think I am ignoring you.Eve

[eveParticipant]

Hi Stephen

Sorry for not welcoming you to the site earlier,as I have had a few problems myself,its my husband who has Myeloma.

They say myeloma is such an individual illness and everyone reacts different to the drugs involved,I can only tell you about Slim my husband.
he was on CTD had 6 cycles and looked if he was in remission,bloods and kappa light chains were good,but when they did a BMB his myeloma had increased to 80% in bones.
He started VDC and after 6 cycles it came down to 6%.but the only way of telling is a BMB. He is now waiting for SCT,

Other people have different stories because it,s such an individual thing,I hope this is some help to you,EVE

[eveParticipant]

Hello Stan

Welcome,I can well understand your concerns,have you mentioned to the doctor the MM history?

Some Myeloma,s do not give any indication in the blood,there are number of different Myeloma,s and the correct blood test plus urine test have to be done. This will indicate if myeloma is possible,the only positive test is a bmb,if they suspect Myeloma the usual is fully body x ray MRI scan plus BMB.

Most myeloma,s are late at being diagnosed unless you have a good doctor.my advice is to ring Ellen on this site,she should be able to advise you,or ask to be revered to a Heamatologist, if you do not get any joy from your doctor.Or do what I did see a younger more open minded doctoring the practice who will listen to your concerns. Eve

[eveParticipant]

Hi Tracey

Just quick reply as doing this on I pad in hospital

Slim takes Amitriptyine 10m to help him sleep they have just upped his dose to 25m because they also use this for PN as this is used for PN might be worth asking you doctor. Eve

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