Hi Belles,
I have read of one person who had this but I think it was in the USA, whoever it was and Im sorry I cant remember I do recall they were very high profile within the usa, maybe they were something to do with the International myeloma foundation, I feel they may have spoken in the house of representatives about it. Sorry ant remember more but Im sure you can surf more for it. Meanwhile welcome, is your mum an identical twin? You cant get a better match if she is as the DNA is exactly the same.
Sorry you cant find out more but a transplant from a twin has to be the very best option you can get for an SCT.. Good luck to your mum when it happens.
Min
Thank You Roz.
We had a flying visit to the day ward today for bloods and the results are finally going his way. Neutrophils are 1.5 at last after 2 weeks of 00.2 ..He is feeling fine ( ish) compared to the past 2 weeks when all he wanted to do was sleep and stay in bed)
The plan is 4-5 weeks for a recovery period followed by further melphalan 100% and stem cell rescue:-/
something to look forward to. Meanwhile back on thalidomide low dose until then.
Thats all folks …..the end
Love Min
PS the question regarding cutting the grass is don't do it if your neutrophils are low…. there are too many spores that may enter the lungs.
13>0 13>0 over and understood. Now close your eyes and visualise… some people actualy believe that stuff and whatever it takes…. Good Luck to you.
I am sitting here listening to the Tennis while Peter is watching it having missed all last weeks games and sharipova or whoever she is is making a hell of a racket (pun) while the little dwarf. whose name sounds like fungi shuie….is as quiet as a mouse. Can you tell I am not a tennis fan.
at the Infoday I went to they said using coconut butter was very useful for PN… Its probably the only side effect Peter has [u]never[/u] had from this sodding disease >:-(
Im curious to know did you lose any weight during velcade? My poor man looks like a matchstick man now got to feed him up like the fatted calf.:-P
Min
Please don't apologise Gill I know how hard it is when they are released from hospital and how frail from SCT. How is Steven? has he picked up? I don't suppose he can sit out in the sun either unless you use factor 30. Best wishes to you both
Brought Peter home at lunchtime having spent 5 days in Hospital with neutropinic sepsis..something [b]you all need[/b] to know about look it up . Its very dangerous if left too late; follows on from chemo and neutropenia( no immune system) Bone up on it in case you need to act
Min
Peter is on the mend and very much better.He is weak as a kitten but lovley and rosy compared to the grey yellow he has been.
Thank you everyone for your kind thoughts and good wishes,tommorow a decision will be made as to wether he is fit to come home. Hopefully we will learn what happens next too.
Love Min
Hi Kieth pleased to hear your ok, have a lovely holiday/break. Forget all about hospitals and needles for a while. Peter is in the Freeman right now in the ENT ward… they have never nursed a cancer patient so when I went in tonight to shave his pi bald head they were shocked. Ward 33 where you will be is a lovely place and really nice staff too.
love Min
Hi Susannah
My husband had had cdt an sct followed in short time by velcade and finally Revlamid. The latter two stopped working after 4 cycles. We discussed Bendamustine but it was decided that as it is very much like melphalan that they would give him a large dose then another when he would have a further sct. He is feeling the effects now of the melphalan and has several infections 20days post infusion.
It is a struggle but desperate means call for desperate measures. Dont know what happens after this but I would say Peter was on Thalidomed with the melphalan and the Dex of course and tolerated them all ok. He is poorly now as a result of the large dose of melphalan similar to that given during transplant.
He has had only one result since and it was very encouraging. Bendamustine is a derivative of mustard gas, and used widely in Europe apparently, so they said at the Info day I went to. I hope your husband responds well to it.
Min
Hi
The hospital is 7and 1/2 miles away so only a 20 minute drive in heavy traffic. The dogs well we have three labradors6 9 and nearly 13 yrs so cant really ask anyone to have responsibility for them. Fortunatly we have a massive dog flap on the garage wall so they can get out into the garden when they need to. The walking of them is actually very therapeutic and do all my thinking when walking.
He rang today to tell me he has finally had a knock out drop and slept and with it he felt much better this morning. The Dr has prescribed some mouth washes to help with the ulcers. He still has a cough They still have not got the result of his stool sample so cant treat the trots yet. Im currently boiling some eggs to take in this evening and some greenish bananas should help too.
Our son is at sea again..always is when his dad is really ill, He always comes home when he is well and cant quite understand him being ill per sae as he has never seen when he is like this. Daughter has a throat infection so has to stay home. But I am coping, thank god I don't have to work anymore as that was difficult then.
He is finally eating after 2 weeks with no food.
The kitchen is on hold I cant concentrate and have lost interest for the moment. But will sort it out when he is home Just finished a pile of ironing and now off for another walk.
Then I can sleep too.
Love MIn
Hi all
Peter is proper poorly. His cough and throat are slightly better. His breathing is laboured and raspy. He now has dreadful diaroheah
He will remain there until Monday at least. They finaly introduced reverse barrier nursing today. Apparently no one who booked him into the ENT ward bothered to tell the sister he was neutropenic. He is feeling lousy weak,cant sleep as they are doing obs every 15 minutes due to raging temperatures.
This is all new ground for Peter and I and yet another steep learning curve. But as he has been attending the day unit for the past 2 weeks for blood products and left in the day ward with emergency admissions with bad coughs it is not unexpected. I am exasperated as here I am trying to keep him away from germs and they dump him in a room with full of them.
I have seen that Dr almost every day in a corridor in the past two weeks and she looks away whenever she sees me………she should be hanging her head in shame. If she had acted sooner Peter could have been treated long before he deteriorated
Before Peter was diagnosed with MM he was attending the renal unit for kidney failure. Every week he had blood and urine tests and one week after he had had an xray for a back pain which showed his 1st 2 crushed vertibrae his blood results taken the previous week showed raised calcium level. She said cant understand why you should have a calcium reading this high. Peter remarked innocently that he had been drinking gallons of milk…… She asked him to stop drinking milk !!!!!!!
The next week I asked her what they planned to do about the problems with his back and the pain he was in and she said………Just rest and they will mend…
Months later as he continued to deteriorated she said I dont understand what it going on with you Peter….. your a mystery..
This is the point at which I had had enough and said Would it help your mystery if I told you Peters mother had died of myeloma. NO NO its not possible she said….. myeloma is not hereditary… indicating to me she understood what MM was but did not associate him with having it.
My daughter and I had already diagnosed Peter from the internet, we were exasperated.
Well done that man. I love to hear of success stories and I am sure it is in no small part due to your encouragement Mari. Hearing of someones achievement with mm is just what we need.
At any time of the journey there is doubt, but your news blows it away.
Love Min
Hi Bridget,
The 'mac' nurse Peter had simply wrote the prescriptions herself, no reference to the Dr at all, other than to send him a copy of of the script.
I am currently in two minds wether to contact her again after over a year, as peter was admitted to hospital today and I just felt she would have smoothed things out to make it easier, Neutrophils 00.2
Can i refer myself or do we wait for the hospital to do it? Will ask tomorrow
Hope your currently enjoying some pain relief that works well
Love Min
Hi Angelina,
I am so very pleased to hear that John is in agreement with you, I doubt if your sister in law would be able to put herself in your shoes, otherwise she would not be so negative.
For my part, I am not in your situation but about 4yrs ago I bought a gold backed notebook of the a5 size and started to recount some of my own memories of my childhood, and games I used to play, pastimes, journeys to school. moving house at the age of 4 my 'little brother being born' keeping chickens and so on.
it was quite cathartic. Stirring memories I had long forgotten as one memory remembered led to other memories forgotten. I did it to leave to my grand daughter,fearing that later in life I may not be able to write or remember these things and a way of life which would be alien to young people of today.
Memories book I called it and occasionally I bring it out and add to it. so its not only for people who have been given life limiting news. By the time she reads it handwriting will be a thing of the past so if nothing else she may recall me just by my writing style.
Good luck in your venture but expect some tears, I cried doing mine just because…… Im Soft
Love MIn
Brilliant news Colpot and long may it continue.
Peters venture into Revlamid started out well then sadly stopped after 4th cycle. But life goes on. It never fails to amaze me how everyone responds differently to these drugs.
Just goes to show we are all different in every way ,under the skin too.
Min
