[eveParticipant]

Hi Everybody

As you all know my husband Slim spent 22 in hospital recovering from,septic pneumonia ,has been out for 13 days,starts back on ctd on Wednesday,will go on fourth cycle and expects to have another two cycles after that.
Came home weighing 9st 8lbs,walking on sticks,although not breathless,with blood clots in lungs,and damage to lungs.even the smallest task leaves him exhausted.
Has anyone else had this amount of damage and managed to have a sct?
He has Kappa Bence Jones light chain myeloma,if there is anybody out there who is ahead of him on this journey ,and can give me any info I would be grateful,have contacted Ellan about damage to lungs,not able to tell me if this could be mm in tissue without biopsy,

People keep telling me,he should never have been discharged from A&E on Easter Saturday.although I have had assurance this will never happen again,because his records have been marked,I have lost confidence in the hospital,and I am dreading any thing like this happening again.Also wondering has this damaged his chances of sct.regards eve

[BADGERParticipant]

Hello Eve

Is there any way you can change hospitals and get into one of the London units with such better standards of care I believe Kings and UCH are really good I attend Uch they cannot be more careful and caring do you think now Slim is home he could take the journey I really do hope the CDT works for him
and he will feel better soon
Love Jo 😉

[eveParticipant]

Hi Jo

No not possible round trip of at least 160 miles,journey alone with bone pain would be bad for him.

It,s not so much the myeloma trials,It is the conditions which seem to go hand in hand with it,Slim complained of pain in side for a long time,we thought bone pain, when the cat scan was done turns out lots of wedge shape holes plus blood clots,must of been there for some time. If he took ill,although you ring the team you still go through A&E if an ambulance is called you do not have choice of hospital.This is were it seems to go wrong. I carry a massive folder with me now,I get all the results of any test,bloods urine I try to get hold of all reports on any test carried out,even if I do not understand them,Google is a great help.

Six months on injections for blood clots plus three more rounds of ctd seems a heavy price to pay for the inefficiency of a hospital.I just cannot see sct being on the cards.

[MinParticipant]

Hi Eve
Peter had just finished his 6 months of injections for blood clots caused by the medication.. It took about 6 weeks before they diagnosed that then.
Realistically we have to understand that medicine is not an exact science and they do often get it wrong. But why do they get it wrong when you can tell them what it is… if I take one of my dogs to the vet. She has to work out what it is from what I say and what she observes. Because the dog cant tell her how it feels!!!
If I get ill I want to be dealt with by a vet LOL
Seriously though get a supply of high calorie powders from your Dr or nurse Peter has one called PRO CAL.. I am giving it to him at least 2 time a day hidden in Porridge or soup or custard. It is tasteless. But from experience I KNOW it works. He has a hard time ahead of him and he needs to have some weight on to be strong enough to bear up to what comes next for him with double high doses of chemo. We plan to get him built up as I know he will lose some weight.
We have been here before and he lost 4 and a half stone when he was 1st diagnosed and whilst he did not get it all back he was in '''fighting condition''' when he had his transplant.
He has Bence jones too and had the clots on his lungs plus he has kidney damage and 4 crushed vertebra and a heart condition… He is 58yrs old and no longer fit but he does lift some weights from time to time and walks as much as he can, even if its just up and down stairs.
Slim will get better and the breathless ness will go eventually as the injections melt the clots. Feed him up . let him have all the bad things he should not have. Chocolate cakes ice cream etc. Just don't forget the meat and two veg too.
Speak to a dietician if you can and let them tell you how to build him up in readiness. You will be surprise at how quickly he can regain some of his weight. Little and often is the key.
Love Min

[DaiCroParticipant]

The best of luck to you both Min, if anyone can do it you can.

I am forever amazed by the recovery from a doubtful position, my own included. I have just started my second cycle of Velcade and I hope for the best, especially as I look and 'V' side-effects and Dexness aside, I feel so well. Ok, I have my physical restrictions but they are both expected and accepted but generally I am ticketyboo.. and that will do for me. I hope Peter joins the club sooner than later.:-)

[eveParticipant]

thanks Min
Always there with good advice,Slim and Peter seem to go hand in hand,only you are ahead of us.
Do you wonder whether it is related to being in the RAF,the reason I ask,is in my doctor,s surgery,there is Slim with Myeloma,and another ex marine with AMyloids,Facts are 3000 people a year get Myeloma,600 People get related condition of Amyloids how rare is that.Deal is a small town with a big connection to the marines.May be its me looking for answers again!!!!
I keep having to tell my self we are lucky,had a nice day today just pushing Slim in to town,enjoying the fresh air,and looking at the blue sky,joined friend this early evening,8 adults and six dogs,just enjoying an unspoilt spot,right by the sea walking,its a lovely place every one says good morning,and every evening its just the same,people are so nice,It,s not planned people just turn up for the last walk of the day.I feel lucky to live in such a nice place,but must admit I can see France from here.!!!

[AMcGuireParticipant]

Hi Eve … interesting question about being in the forces having a bearing on MM and/or amyloidosis.

John was in the Navy!

I remember 4 years ago reading on this forum about a gentleman who thought navy related fuels were something to do with his diagnosis of MM … a few others had put in their tuppence-worth and the common thread seemed to be fuel (think there were 3 of them from up and down the country). Don't know if there is any truth in the matter or not, but its something I remember from way back when I first joined the forums when John was first diagnosed (December 2006).

Sending healing thoughts and love
Angelina xx

[eveParticipant]

Hi Angelina

Now that is interesting,as Slim served many years,as a young marine on board ships,travelling all over the world,also the other ex marine same age as Slim served in roughly the same places at the same time.
I know the old navy ships were covered in asbestos and Slim said were they slept above them were pipes covered in the stuff,when all these wedge shape holes were discovered,they checked for tb.my immediate thought was asbestos,I do not want to go down the route of biopsy ,as what difference will it make,its there and we have to live with it,as long as it,s not tb,because that would effect the whole family.Thank you for your kind thoughts'
eve

[MinParticipant]

Hello Again.
Do I think that Peter got his mm being near to fuel from aeroplanes????
No I do think all the many injections he got to go to the Falklands and anywhere else may not have helped.
But in reality, there are many people on here who have never been on or near a plane or ship so how did they get it?
In Peters case I think his cards were marked by his mother, to a certain extent as she had it too. But then again non of his brothers or sisters have it!
There is little point in looking to blame anyone or thing.
Statistics show that one in four people will get a cancer of some kind.
Of those, many will get little opportunity to fight it, or respond to treatment. MM is a flippin awful cancer, indiscriminate and unforgiving. But I watched my young niece die with only a weeks notice of another kind of cancer and dreadful as it sounds this one gives you time….
I am sorry if this is upsetting to some readers but even with a late diagnosis there is often times time for some kind of treatment regime to work.
The horror of Peters diagnosis in Aug 2009 had me in my wild imagination in the depth of dispair. Whilst the roller coaster ride since then is not pleasant. I have learnt a lot about myself, and the fighting spirit of my husband.
As for statistics. My son has a neighbour who's father has mm so 2 seperate people in the same street with a parent diagnosed with MM.
Love MMMMMMMin

[eveParticipant]

Hi Min

Yes you are right Min,We tend to forget there are so many people out there fighting there own cancers,

Slims just aged twenty years in six months,and as for myself,when walking with Slim and a friend yesterday,someone thought she was my daughter,only three years difference in our ages.!!!! It made me realise I have not looked in a mirror for ages,solved my problem covered all the mirrors up LOL.
Started CTD yesterday waiting for Dex to kick in,he is on half the dose so may be it will not be as bad,

I saw someone who is on this forum at the hospital on Tuesday,he started about the same time as Slim,he looked great,looked if he had been on holiday no weight loss nothing,and Slim looked awful,I could not help but think why!!!
Anyway to day I am not going to go there,suns just coming round to my windows,going to make the most of the day,love to you all.eve

[brochoParticipant]

Morning Eve you made me smile when someine thought it was your daughter! Well my other half has been mistaken for my son several times the last time I was in hospital with pneumonia and a lovely turkish lady asked if my son would be visiting!! A bit unfair I thought but I dont look in mirrors anymore either!! Have a good day love Bridget x

[eveParticipant]

Morning Bridget

But Bridget I am not ill,My hair is like straw,bags under my eyes,trying to think when i last went to hair dresses!!!

Anyway not going to moan today,s-o-d the cleaning lovely day out there to good,not to enjoy.Going to make the most of it bit windy, but better weather than most places.
Have a nice day.eve

[brochoParticipant]

Hi Eve great idea bother the housework and have a lovely relaxing day!! I think that although you arent the one with myeloma you have the hardest job, I do think my other half has to put up with a lot of stress all I have to do is be a patient !! I encourage Jeff to go out and do things that are nothing to do with me or my illness for his sanity !! But for a woman there is nothing like a new hairdo or just good old retail therapy!!! Had my hair dyed the other day and feel much more like my old self!!Enjoy your day love Bridget x

[zasrsParticipant]

Hi Eve

I hate mirrors always have done! They tell terrible lies.

Enjoy the sun sod the housework!!

Sarah xx

PS where has my Happy happy day gone?!!!

You, dear Eve posted now it has gone!!!

Sarah

[eveParticipant]

Hi Sarah

Ido not know!!!!!!!I realised I was posting on happy happy days,got mixed up between you and gill with that thoughtful grandchild,so I deleted my bit.Just caught your reply,looked at it and it has gone,did not think I could do that,so so so sorry.
I only deleted on my bit were it says amend or delete may be I have a and error in the system,when you receive this, reply and post then go back and delete it and see if it all goes.
sorry again,please try that and see what happens,it might explain why some post goes missing eve

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