Hi Russell
My advise would be. Worry when you have something to worry about.
Maybe you have a smouldering kind of MM that has been found early and you can get on with your life for quite some time.
If you have to wait for the results from your bone marrow I imagine you are being treated at a smaller hospital as most of the big ones have there own equipment,
As a guide when my husband had a bone marrow sample taken it was 11am and the Dr said it would be about a week to get the results. Yet at 7pm he was certain it was MM.
If it takes while it cos they are doing ALL of the tests as they need to rule it out.
So Far so good for you and hope you dont have to wait too long to get on with your life and put this blip behind you. Enjoy your weekend while you can as if you have to start medication, life will be suspended as you know it for a while.
By that I mean wild nights out with the boys, as you will get very tired!
Regards
MIn
High Susanah
How dare they put Michael at risk because of a trial. If he needs platelets or neutraphils he needs them Full stop.
At what point will they intervene?
I believe the Dr's oath is First do no harm. I think you would do well to remind them of it.
Just as a matter of interest is it a condition of the trial that he has his Bendamustine every week or month or just when his blood results say he is well enough to have it?
Peter has had some unconventional treatment and he is having the suport of blood products to help him. I am not sure that reliance on them is the way forward but for now it is essential for his wellbeing.
He is having 2bags of blood tommorow though its not due until Monday but they decided that he would have a better weekend if he got it on Sturday instead.
Now that is thoughtful and for a change.
I hope your bearing up too as I know how worrying it is right now. Regards to Michael
MIn
Hi
Sorry to hear of Stevens problems here is hoping the radio therapy gets him back on his feet. I can understand how worried you are by the lump too and I am sure they will calm your mind on Tuesday. Good Luck to you both
Peters second transplant is becoming very unpleasant compared to his 1st. In our case we are actually hope full that this is a good sign.(How sad is that) But with only 5 months from the 1st one and 5 cycles of velcade and revlamid each failing ;the fact that he has classic symptoms now that he didn't have with his 1st one that this is a good sign.
Velcade was the pits for Peter and Revlmd not much better though they were both good to start with.
He has the sore throat and gums dreadful diarrhoea constant sickness and feels generally like sh***
Had platelets today two bags of blood for tomorrow followed by the new GCSF injection Neulasta!
1st time had nothing, and no support needed so perhaps explains why it didn't work,
Hey ho, Roll on the Bank Holiday so we can all cheer up in the rain. Bet you have sunshine 'down south' hmmmm
Min
Why is it that 4am is an hour that keeps you awake. i can usualy get to sleep no problem at al but waking at 4am means I am just washed out for the rest of the day whilst my imagination goes into overdrive.
I think we need a 4am posting board so we can swop our demons and put them to bed.
Does everyone have middle of the night insomnia?
Min
Snap
We are having one done too. and as I write I have the man (fitter) who I thought I had seen the last of back. For a gas leak
When He had finished the job, the very last thing he did was to fit the lights under the wall cupboards and a switch.
Peter is always on the loo with diarrhoea and as I dont use that bathroom I thought the smell was him (oops)it was chemo !!!! How stupid is that.
Upshot was late at night got worse and h ad to call out an emergency man who promptly switched off all my gas and left.
The fitter had to come back at 10 at night and take all the wall cupboards off rip off plaster board and cap the leak where a screw had gone thu the pipe.
Peter and I have been is shock overnight as a result and right now although I have a beautuful kitchen I wish I had left well alone.
As for yours have your got all the stuff back in your cupboards out of boxes yet?
I had just filled the wall cupboards and have had to empty them and now I have lost interest. Being up all night worrying.
We were trying to do as much as possible to make life easy and so wish I had left it alone.
I thought Peter was going to be in hospital while this was happening and he was let out again after 3days so its been a nightmare trying to keep everywhere clean on a daily basis. Never again will I undertake work of any kind indoors we will just have to put up with what ever we have from here on in.
STill got the floor covering to get done and the painter to come too but my cardboard boxes have become my new floor covering for now.
Sorry for the rant but it may give you a lift to know yours is going well without my kind of hitches.
Love MIn
Ah Dai
I recognise these symptoms only too well. Its like I go upstairs to get something, get to the top of the stairs and haven't got a clue why I am there!!!
Have to go all the way down stairs retrace my steps usually to remember what it was ,
I call it my senior moments. Believe you me, its got nowt to do with velcade dex or otherwise its simply getting old and slowing down.
I did do a bit of brain training and became sharp as a button, but still couldnt get to the top of the stairs and remember what I went there for.
Time to chill out and relax and you will be back to your old self.
I need to listen to myself and do some of that too.
Goodnight
Min
Hi Russel
I feel for you and your family who must be reeling from a diagnosis of the b stard illness. I hope you are receiving the best of care that is available, and if not let us know and we will keep you right.
A diagnosis of this kind is mind shattering, and I would be lying if all of us did not feel devastated at the time of diagnosis.
But its not all doom and gloom. Especialy not for someone as young and resliliant as you are.
The prognosis is far better for young people than for older people and I would direct you to the home page of this site and The latest news item on Prognostic Model which I would push for if possible in your area.
Investigate it further and it will take your mind into the world of myeloma that you have just entered.
I wish you all the best and hope your pain is sorted soon
MIn
Rest in Peace Dear Gaye,
You were a bright light at a time that I was in a dark place and I will be forever grateful for your support and humour.
I am touched that she thought of us to the end, God Bless
Min
WHAT £150 you got to be havin a laugh!
Who on here knows anything about Data protection?
I know criminals are allowed to see a copy of there record and the charge is zero theres got to be something wrong here… oops I feel a momentary annoying letter to my MP coming on if this is true! As you can see I am in Rant mode. And its not due to any Dex! There is plenty of natural steroid in me now I have read that. HEE Hee
Nurse rang this morning to discuss next appointment and I asked for Peters discharge letter. She said she wold post it out. I asked her to e mail it. Said she was not allowed. How much money would be saved by e mailing appointments letters etc instead of postage.
Min
Hi Carol
Good news is the best and the more of it the better. Bad news happens but hey someone has to do it.
Hope your 0 pp lasts a very long time and you can get on with life now. All the best
Min
Hi Ivan
Look up Peripheral Neuropathy. if your symptoms are identical to a typical PN speak to your healthcare team at the hospital ASAP. The helpline card you should have for evening use will give you access to a Dr who can ansa the questions you have.
Min
Thank you one and all
He made it, got him home just in time to throw up! Said he had had salad for lunch. Followed by yogurt
Whats all that about then. I thought these SCT patients had to have a neutropenic diet. Doesnt anyone check that men as dopy as my husband should not have this kind of food.
Ah well perhaps it was just excitement at the thought of coming home and camping out…Seeing as i don't have a working kitchen yet.
But the bits I have got are absolutely bleeding wonderful. Im actually getting excited now, which is quite a pleasant feeling after so much doom and gloom. Roll on Wednesday when its finished. Might just get the champagne out
But the more immediate plan is to have a good nights sleep for a change…Bliss
Min
Hi Cathy,
I believe you should have been given a card by the hospital that is treating your partner with phone numbers to ring in the event of a change in condition, reaction to the drugs or a temperature etc etc.
Now I have no personal knowledge of PN periferal neuropathy as it seems to be THE only thing my husband has not had with this blasted illness.
But and I may be wrong it sounds like the toes thing is something you should not delay to tell the team. If it is PN this can go on forever if he is on Thalidomide for instance.
With the best will in the world I dont think GPs can deal with the side effects of drugs like thalidomide and you need the guidance of the Myeloma or Haematology team to deal with this.
PN should not be left unchecked as DAI would confirm, but he is on velcade and the PN caused by Velcade can be reversed in time or with a lower dose.
I strongly suggest a phone call in the morning to the hospital for some advise. if it is PN I am told coconut butter is usefull but I am sure someone will come along who knows more than i do as they will have personal experience.
Regards MIn
Hi Cathy,
I am a carer too, never said this before but I have two years experience of it! I know I would rather not be here, but I wish I had dipped my toe in the water earlier so to speak as the isolation of having a husband with one of the rarer cancers is mind numbing.
Our nurse specialist was the only person we could refer to at the outset, and with the best will in the world she cannot know how we feel watching our loved ones.
But now your here please feel free to ask about things you wish you had had the mind too at the hospital but forgot.
We are not experts in the field of MM but we do have a lot of personal knowledge and experience and its can be helpful to know your partner is going along the same lines as most.
We can also help you when you want to have a rant and dont want to upset your family by letting them think you have lost the plot. We are a happy bunch for the most part, and hope to hear from you again.
Regards
Min
Eve
During one of our heart to hearts, Peter asked me if I was ill?
Whilst I am not I am extremely tired and had made an appintment with one of the older female GPs in our practice no appointments unitl 1st week in september !!!!!!!as I am reaching the point where I need some pills to pop so to speak, feeling tearful and dreading the future.
He saw the appointment card and worried that I was going to get ill and not be able to look after him. Like slim he gets DLA and I get carers allowance, when i 1st applied for it a few months ago I felt fraud, now I dont think they pay me nearly enough.
He rang earlier to say he is probably back home tommorow. The house is a tip. I have no kitchen and the fitters start tomorrow so I am having a breather and cup of tea before I start more darned scrubbing.
At least the bedroom is spick and span so he will just have to stay there.
There will be no more home improvements from herein as just cant do it. Cant even watch contractors do it without wanting to tell them what to do.
Peter had said I should get a yellow hat and let them see I am project manager. Might just do that and turn up at hospital with it on and see if I can project manage them too!
Love MIn
