This topic contains 17 replies, has 12 voices, and was last updated by 
eve 12 years, 11 months ago.
Went to hospital today for the new blood test results. They were even more frightening than we imagined.
In less than a week his numbers of light chains have doubled to 10,015
Bendamustine is not the treatment choice or option. Melphalan is to be used twice because Peter has plasma cells in his blood which is very worrying and after some discussion the suggestion was a mega dose of 70% melphalan. followed by a further dose of 100% melphalan identical to the one used prior to sct.
To give you an idea 15% is used prior to harvest.
He was warned that this will probably make him very ill and he will most likely need to be admitted for infections and a word I had not heard before and right now cant remember.
Followed by another transplant with his last lot of cells. If this knocks it on the head. It will be followed up by Thalidomide as maintenance. Meanwhile tomorrow he starts onto weeks of bigger doses of dex ugh and bigger doses of Thalidomide to see if he responds prior to arranging for the 1st dose of melphalan. On the plus side we were told some time ago there would be no further sct as 5 months is considered a failure
He is understandably gutted, as indeed am I. Sibling donor cell transplant was mentioned but the mortality rate for over 50s is just too much of a risk.
He will not get the cyclaphosphamide to go with the D and T so now we watch and wait with a big Gulp. again wait to see what life has to offer other than a further kick in the slats.
Late at night and finding it hard right now to be positive but he says he is not ready to give up yet.PHEW
Evening Min
I held my breath whilst reading your post just now, I can feel how tense you are bless you. This disease has so many twists and turns, its impossible to predict whats coming next.
Firstly I'm really pleased Peters recovery plan is beginning tomorrow, the sooner the treatment starts the sooner you'll have him well again. It does look as though things are going to get worse before they can get better. I applaud Peter for not being ready to give up yet, now thats something especially when his "numbers" appear to be so grim. Fighting spirit and a positive head is most definitely required, and by the sounds of it he's determined to give it a good go and thats just wonderful!
As for you Min, oh bless you I feel bad for you carrying the strain on your shoulders. The supporting role is often the most difficult. Watching someone you love become so ill is heart-wrenching. All I can offer is my love, healing thoughts and tell you that I'm thinking of you both. Dex – urgh! Please try to let any nasty words wash over you, they won't be meant, it'll be the drugs talking … easier said than done though.
Wishing you better days ahead and sending healing thoughts and love
Angelina xx
Dear Min I had to read your post twice as it didnt seem possible that this wretched myeloma could kick you in the teeth like that Thank goodness though they were able to pick it up fairly quickly and come up with a strong plan to knock it right back. I feel for Peter , the thought of having to go through all that must be hard to contemplateThe big thing you have in his favour though is that Peter is a fighter and also he has you to fight it with him, together you will get him through it Hopefully after all that Peter will get a decent time in remissionand you can do all the things you want to lots of love Bridget x
Good Luck Min
Wish I could help you more ,no knowledge of treatment as you are ahead of us on this journey,Peter is a fighter and I think this goes a long way,I wish I could say more in words to comfort you,but we all know,these are desperate times,
Too stop my self from loosing the plot,I now resort to popping a pill,tried g&t,not a good idear.stops me loosing my temper with people who tell me everything is going to be ok,nothing is ever going to be ok with this nasty myeloma.we just have to make the best of it,and take what is offered to buy time
Peter being a service man most proberly think,lets stop talking and just get on with it,if anyone has a good chance he has,be strong for him Min,
thinking of you both,eve
The best of luck to you and Peter Min. I do hope it goes well.
kindest regards – Vasbyte
David
Dear Min
Thinking of you and Peter and what must be such difficult time for you both. I'm so glad that Peter is at least feeling well – that puts him in a positive position for the further treatment planned. I'm keeping everything crossed for you both.
Tracey x
Hi Min,
I often read posts and don't respond, but I really wanted to write to wish Peter AND you, all the luck in the world on the journey you have ahead of you. This MM is just awful in what it does to Peter, and I hope that the plan they have set up, does what it is supposed to and that you guys get a bit of a break at the end of it.
It does sound like things might get tougher before they get better, but as everyone else has said, you guys have a really good fighting spirit, so keep your chin up, and when you're finding it hard to do that, come on here and we'll try to help you to!
With lots of big hugs and all my thoughts
Debs x
Hello Min
so glad they have have come up with a new plan, THALIDOMIDE is a bit of a wonder drug I so hope it works again for Peter. Did you know how they dicovered it worked for MM they were treating patients for Leprosy and they happen to treat some one who also had MM a eureka moment the MM was put into remmission and they discovered it was the thalidomide you never know whats round the corner
Thinking of you both
Love Jo xx
Hello min,
Having just read your post thought I'd offer you both my love and support, hope the treatment goes well.
Thinking of you keep positive.
Love liz xx:-)
Hi Min
So sorry to read your last post as the other replies have said it looks like bad times then …better times:-D Gordon went ontp thalidomide in 2002 after his 1st sct.which worked really well no problems no side effects, he then relapsed in 2008 and then went onto other drugs
I heard a slightly differrent version to Joe as to how thalidomide was rediscovered, a doctor working in Jerusalem had a parient who was in a great deal of pain due to leprosy and found an old bottle of thalidomide at the back of the cupboard and in desperation gave some to his patient, it not only conrtolled the pain but halted the leprosydue to the drug stopping ? not sure what but is relevent to MM. Now I have written this down I think I prefere Jo's version!!
Anyway Min hope all goes well with the treatment everyone seems to have so many different symptoms and respond so differently;-)
Best wishes Sarah xx
Hi Min,
I wish Peter the very, very best with his treatment. It certainly does not sound very pleasant, having been through most of that at one stage or another but it is a plan… and hopefully a plan that will get him his shot at the SCT. I appreciate that the medics are warning Peter that he will feel very ill with this radical treatment but radical (or drastic) can often lead to good results, however weak it temporarily leaves him. Personally I would be reverting to my old mantra…'Whatever it takes' and snarl at the Mephalan as it went in (at least that's what I did last time).
It's an unenviable position to be in min I know that… but it is a plan and it [i][b]co[/i]uld[/b] lead to a very positive outcome.
Here's hoping and wishing with everything crossed. 🙂
Dai. xxx
Thank You everyone for your support, Its good to know we are not alone on the roller coaster.
The delightfull dex kicked in today and delivered a feeling of a well being and big appetite(much needed due to recent weight loss of one and a half stone) and the nasties.. Had a little moment of shouting and loss of temper…………him not me..something havent seen since way way back.
I have a question that I hope someone can answer.
Weight and height were done on Friday, and I remeber this being done prior to melphalan before. They work out the dose based on square footage or something.. anyway there is obviously a formula to it based on height and weight. If his vertibra were not crushed and were still intact would he have been given a dose based on the taller and original height?????
Now here is the thing that has always bothered me since his 1st sct.
Peter is four inches shorter than he used to be but the flesh is still lying like a belt round his waist.
So if the dose is based on his now height rather than his [i]WAS[/i] height could it be that the dose was less than it should have been.
I am grasping at straws to understand why the 1st transplant failed. My worry now is will this one fail too if the melphalan dose is too little.
How many people who are shorter than they used to be due to crushed vertibrae have had a poor result from a transplant. Is it a common theme? I am curious and will make sure he brings it up when we go for the drip but before then I would like to know if Im thinking a load of bol***s.
Do you have crushed vertibra and has your sct transplant result been dissapointing?
Hi Min like Peter I am now over 3 inches shorter than I used to be my remission lasted 18 months , which is not a very long one but neither is a very short one . It is an interesting thought though I have not seen anything to suggest spinal damage might affect remission time Hopefully you will get lots of answers which give an overall picture love Bridget x
Hi Min I've only just picked up on your post and sorry to hear how Peter is suffering at the moment.
One of the things I'm noticing is the way this horrible disease seems to wear us all down patients and carers alike.
I won't go into all the details of my own situation AGAIN as it's the same old trampled ground but the whole thing does get to me from time to time.
I'm due another sct sometime around August after I've finished the Velcade which thankfully has managed to reduce the PP's from 14 to 3 at the last count.
I have little or no energy and just wish I could get back to where I was 18mths ago,not perfect by any means but better than I am at the moment.
But enough about me as Your lad is having a much rougher time of it.
I think it's important that we sound off every now and again just to get it off our chests and into the open.
We all know the score but we have to keep on fighting,and by doing so we will beat it in the end.
Lookafter yourselves and I do hope things start to improve very soon.
Keith.
Peter got a quick phone call yesterday to say they had a 'slot ' free due to a cancelation. Today he had is 1st mega dose of melphalan. Taken with an injection of anti sickness and 2 iced lollies…..
We came home and he had had his lunch on the day ward and was starving so had a cheese and tomato sandwich.. but only managed to eat half of it before feeling like a hug of the big white telephone!
He has had his sicky tablet and now his dinner of mince and tatties (his request) feels a little sick but fighting it off with his usual aplomb… Hot flushes and mouth watering going on. So watch this space for more updates. Not expecting it to have any detrimental effect for a few days and back next wednesday for GCSF injection/s
Fingers and toes crossed again.
Love Min
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