Hi Bill
Just been catching up on site and noticed your posting.
I do not know about infections with Revlamid but I do in general once you start chemo,you do have more chance of infection as your body is at low ebb so more prone to infections.
My husband contacted Septic Pneumonia,that put him in hospital for 22 days 9 in ITU ans left him with lung problems,Some trust give chemo and antibiotics hand in hand,and there are trials starting to see if this is the way to go.
My own believe is yes it should be chemo plus antibiotics,as steroids mask infection so by the time you GP or hospital realise the damage is there.
Although my husband had pneumonia it took 15 days to realise the infection level was not going right down,and CAT scan showed lots of holes plus mass blood clots on both lungs,Damage done!!!!!
So my advice would be push for antibiotics,once you have damage its hard to get back to a normal level of fitness .Eve
Hi Jo
I was so fed up with not having a break,and waiting on the results,I thought good or bad we will do something.So we went to France in the Motor Home only down to Le Treport,came home Thursday,saw consultant Friday,had booked a last minute cruise last week to the Fjords in Norway,leaves Dover Sunday just 7 days,So happy days.:-D 😎 🙂
At the moment life is wonderful,and we are going to make the most of it,I just wish many of are cyber friends could be having better news,enjoy your holiday Jo.
Have to keep in touch just to keep Tom in line plus I would miss you all:-(
If any one is interested I am on face book,so able to keep in touch and play scrabble. Love to you all Eve
Hi Amanda
Welcome to the site,this site can help in lots of ways,at the moment both of you must be in shock and information coming out of your ears.
As your husband starts this journey,my husband has just finished the first part after having a SCT and is in full remission.which we hope to enjoy for as long as possible.8-)
My husband is on Myeloma X1 trials,has had SCT and will be randomised for on going treatment or no treatment.
Take one day at a time,and learn as much as you can,every one reacts different to the treatment,some sail through treatment with no problems others take longer,its easy for me to say do not worry but you will and just make time for yourself as this is your journey too.Eve
Hi Mari
I have not been on for a while and you soon loose touch with present day situations,so I did not know how things were going.its a pitty it was not done during the school term as this would have been far better for you,but who gives a s–t about the patients not the men in the grey suits,they do not even give a s–t about there staff,It is going on right through Kent sad fact is they would rather have less patients,so they do not have to spend more money,it does not matter to them how it effects the patient and there families sad but true. had my little rant:'-( >:-(
Mari my thoughts and best wishers are with Steve and you,I will be thinking of you both in the coming months Love Eve
Hi Andy
I would love you to come on here and say my pp are down I can look forward to SCT,and I can understand your frustration,Slim has taken a long time to get were he is now.We have the added problem,that month by month we could not tell if it was working,only the BMB were giving us a true reading,with the experts telling us this is very unusual.He is there now Andy 20 months down the line from starting treatment.So take heart, you will get there it,s just when.
Enjoy your break love Eve
Dear Gill
What can I say,drinking champagne last night,with are good news,that no Myeloma cells have been found in Slims bone marrow,and reading your news on Stephen,we are not so many worlds apart,I know you are my future,which I intend to leave behind as long as possible,and Min is your future,a year down the line.So this is are Myeloma World with all its highs and lows,anger and frustration.So we understand more than anyone how you feel,so my heart goes out to you and Stephen.
Do what ever you must do,and take some comfort in your love for one another,and the good times you have had together,and come on here and get your anger out of your system,you have to prepare yourself,to be able to cope with your future,Love Eve
Thank you everyone for your good wishers,we are so looking forward to going to NZ and going off in are motor home,and of course the cruise which will be a first.
When this Myeloma struck it took so much away from us,but I still felt lucky that we had done so much with are lives before Myeloma Land.
I always feel that some good must come out of some bad,that goes on with in are lives,otherwise why go on.Loosing my grandson Matty again brought home,things we do not expect,but life does go on and you must live it every minute.( am I making sense ):-P my thought are wondering
Any way Dai,you are not going to get rid of me that fast,who is going to kick you up the bum,when you are feeling low,I might be a pain some times,but we all need that kick,to get us fighting again,I will just have to be a bit more gently with you,as Tom would say,( be gently with me Eve )
Its a year for Min today,to me it seems,like yesterday,and now a whole new batch of people are joining,and many are so young,but it looks if they are at least catching the Myeloma in the early stages,which must be a good thing,so lets hope for better days and better results for them.
Slim said to me,he is never every going to be the man he was,before Myeloma,and with all his damage,I new this already,but I just feel lucky that he is still around,and not pushing up the daisies,Love Eve
Hi David
What a bummer,I have thought for a long time,you were preparing yourself for something,but I did not think this!!!!,do you think there might be someone sitting up there looking down,saying well you are having things to easy,I,ll give you some thing to think about?????
Well you show them David,if you can get through the Myeloma,the rest is a walk in the park,Eve
Hi Cathy
7 days into SCT,sickness is what you can expect,have they not given you books to read about the procedure????.
It is not very nice to watch,but your husband will come out of this ok.
The reason the nurses have little contact is they try to keep him and other patients germ free,going from one isolation room to another,brings its own problems,this is why it is called isolation,as long as he is responding to treatment and his bloods are ok,then he will be on course to getting better.
Read your booklet or ask the nurses any thing you are unsure about.Eve
Hi
Found it.Eve
Hi Sue
Nice to hear from you,glad you have settled down and are coping with your diagnoses,many people on here are still at this stage for many many years,so lets hope as time goes by,your check ups will seem a bit easier.Although i know you must worry when the time comes round to be checked.
I do not think this worry leaves any one even people who are in remission its just something you have to learn to live with,put it on the back shelf and when it comes round to your appointment,get your mind set ready again.
Wishing you care free times Eve
Hi Tom
Thought you were kidding when you said you needed character references,lol:-) fancy that if I had known you were serious I would have given you a glowing reference.
Any way good luck Tom although you do not need it,I hope you have ordered your mm tea shirts,if I am correct the show is based in Bristol lots of mm members around there for an audience.Lots of luck and love Eve
Hi Deborah
it does sound strange that your mums consultant did not offer an opinion,but I suppose if the trials are on offer at this hospital,it could be seen to either not supporting the trials,against his own believe.So I think your mum has to be very careful here.
If you go to the home page there is MUKS three trials,plus if you type trials in information it will tell you about other trials going on!!!!
I do know about Velcade,in my husbands case reduced cells from 80% down to 6% in bones,we now wait to see if after SCT it maintains this position.
Your mum needs advice before making a decision,some times advice is not impartial.she needs someone with her,ask to see the consultant again,I find if you look them in the eye and ask them simple,if it was you,what you would do???they are only human,and you must make a judgement on there answer.
When we asked a question,how long,we were told 7 years with trials,did not believe a word she said,but still went on trials:-P
Hope this might help.Eve
Hi Only me
I have been wondering how things were,take what ever is on offer to get you through your mums death,it is a sad thing to say,but you have a year ahead,of birthdays and lots of things knowing your mum is not there,everyone of us tread this path,and I hope knowing your mum is free from pain makes it a bit easier,it,s your Dad who now needs your support.
I am so glad that this site helped you.and glad you came back,look in you might be able to help someone in need,Love Eve
Hi Ali
To me this is were the hard work begins,your mum is going to feel great about coming out,and if she is not careful will over do it.This is were she needs looking after,I found it easy to do a bit of a chart,she will be coming out with lots of tablets to take at different times,plus she needs food and drink put in front of her,does not matter if she does not want it,important she eats and drinks.A little and often.
Do not be surprised if your mum does not make a speedy recovery,some like Slim need bloods and platelets,also Slim was hospitalised twice,If you are not expecting it,it is a bit of a shock,with a bit of luck your mum will not need anything.
Ali Slim is over 2 months out of hospital,and is making a very slow recovery,Helen was cooking straight from coming out,everyone is different,I expected Slim to recover fast but he did not.
What they do not tell you is,because your body is at an all time low,other ailments seem to surface,aches and pains,this is part of the slow recovery in Slims case.
Last but not least I kept people away the first few weeks,Slim went out,but again,when not many people were around,the last thing you need is your mum to catch anything from someone else.Love Eve
