[zasrsParticipant]

Hi all

gordon saw the cosultant yesterday protien had jumped so much dr queried the result, so guess 2nd transplant has failed. gordon starting dex tommorow plus other drugs not sure what at the moment. we are going to yorkshire on monday so he will either have a go at all the yorkshire farmers or sleep! who invented dex? b…. drug

cyber hugs to all

sarah

[mhnevillParticipant]

Hi Sarah

So sorry to hear that Gordon's SCT hasn't worked. Thank goodness there are more options about these days. Fingers crossed that they find a good combination that works.

All good woshes.

Mavis

[MinParticipant]

Hi Sarah,
I empathise with how you must be feeling. When Peter got his bad news it was devastating for both of us. But there are other options out there and going back wards to CDT or in Peters case MDT is the way for us( the royal we here!) having tried Revlamid which was good, but not good enough for the aggressive cato mm
Given the past few weeks when he has been really ill and a pain to live with, he is doing really well now. Anyone would think he was on Dex now he is so snappy but its frustration as much as anything
Melphalan seems to have done the job it was meant to. We were at a clinic and nurse suggested some soothing alternative treatments so when he was having his blood transfusion yesterday he had Reiki and kneck and shoulder massage. Came home in a lovely mood! Arrangements have been made to go to a hospice and have some back massages regularly too.
I imagine Gordon is Equaly frustrated having gone through all that 'hassle' to hear it hasn't worked. Frustration doesn't quite describe it but cant swear on here; I am sue you know what I mean though.
Undoubtably you will be feeling just as angry as he is, worried too. Tomorrow will be better. If you have managed to get any sleep.
Enjoy your Yorkshire show, hope its not raining or it will be a quagmire, its rained for 3 days up here so far.Bring the BIG wells.
Love MIn

[GillParticipant]

Hi Sarah

Sorry to hear that Gordon's second SCT has not done the trick. Stephen is seeing his specialist on Friday to find out if his second SCT has helped.

He is feeling quite unwell at the moment so I am worried that the news will not be good. I hope Gordon's new drugs help and wish you both luck
Gill xx

[DaiCroParticipant]

Sarah,

I can empathise… but not much that anyone says, thinks or does is going to make a lot of difference right now.

You and Gordon have got to regroup and find out what is next and best in terms of treatment… at least there seems to be more choices AND there also seems to be a willingness to revisit regimes that have worked previously AND they seem more conducive to a pick&mix policy of novel agents… not exactly gung ho… but there certainly seems to be an air of 'why not' about possible treatments… I don't know if anyone sees or feels this?

My one and only SCT failed after Xmas… although they held off telling me for another 6 weeks until it was confirmed by a further, bigger rise. I got 10 months… of which four months would count as something near 'normal' for me. I was told that because of my excellent response to CDT I was in the top 10% of responders to treatment and that I could expect something between 5 to 8 years (in total) perhaps more… I had a brilliant Xmas and was feeling in top notch condition (taking into consideration my extensive bone damage) so when my consultant broke the news (God knows why but after my bloods were taken I had an overwhelming sense of dread and almost ran out of the building at one point… Janet couldn't understand my behaviour because everything was going so well…

I was devastated… I felt cheated… all my confidence drained away into an invisible puddle on the floor and I simply didn't know where to go or what to do next… so we waited 4 weeks for the 3rd and final confirmation… which was accompanied by a secondary tumour on my sternum… relapse with knobs on.:'-(

But I am over it now… just. I am driving myself forward, desperately hanging on to the coat-tails of Velcade and trusting that it will be worth it (funnily enough, for all the talk of Velcade being a 'wonderdrug' I have never heard or seen any timescales for the length of remission gained from it? ?!!??) My consultant said '6/12' months but after the seismic failure of my SCT she was not going to take any risks with No's… and I don't blame her.

I hope that Gordon can regroup and find the requisite strength and fortitude to take him forward in a positive mood and mien… but God knows it ain't exactly easy – I just hope his medical team come up with something he can latch onto and look forward to.

In the meantime tell him to give the Yorkshire Farmers hell… (Tell him to look vague and say 'You Lancastrians sound all the same to me'.)

Much love.

Dai.

[DaiCroParticipant]

[b][i]'Sorry to hear that Gordon's second SCT has not done the trick. Stephen is seeing his specialist on Friday to find out if his second SCT has helped.

He is feeling quite unwell at the moment so I am worried that the news will not be good. I hope Gordon's new drugs help and wish you both luck
Gill x[/b]xx'[/i]

I make that today. I will be praying, wishing, hoping and crossing parts various for good news for you and Stephen Gill. I have been reading your reports and I know that Stephen's recovery has not been in the same league as the first time (where at this stage he seemed to be consuming stacks of 'T'Bone steaks for fun while loading his wheelbarrow for France…) perhaps a bit fantastical on my part but you know what I mean.

I'm hopeful that Stephen's poorer responses and lengthier, more troublesome recovery is part and parcel of second time-itis and that they will introduce a regime to get him moving forward…

As I have said before, you two are my MM mentors and to some extent my beacons. If Stephen was to gain an extremely good and lengthy response to his 2nd SCT I for one will be extremely happy for you both… and while the signs, in terms of general health, are not indicating fireworks and celebrations… who knows? It might be no more than a slow, slow burning fuse… and why not?

Much love and best wishes to you both today.

Dai.

[brochoParticipant]

Hi Sarah what a bastd this illness is , you must be gutted. Well Dex may be the most evil drug in the world but it is good at getting those pp numbers down quickly. Enjoy your break in Yorkshire I shall watch out for reports of a riot in Yorkshire !! Hang in there Sarah love Bridget x

[eveParticipant]

Hi Sarah,
Just so sorry to here sct failed,i agree with Bridget it is a bstd illness,Slims on a low dose of Dex now and seems to be coping better with it.
I even let him drive now,before every journey was,like a nightmare.
Let us know how you get on. best wishers Eve

[BADGERParticipant]

Hello Sarah

so sorry Gordons SCT didn,t work it must have been a hammer blow on the positive side new drugs are coming on line all the time, look at Mins post good old CDT is working for Peter second time around so don't lose hope
Love Jo

[susannahParticipant]

Hi Sarah There is life after SCTs I know alot of people on this site SCTs are still an option, but my husband had his second in 2003 relapsed in 2006, good result for a second, but what im saying is try not to dispair there are alot of good treatments to follow. Its so difficult when your a carer,I know were not ill but sometimes, Iknow for me, its so hard to keep it all together. Enjoy Yorkshire, Michael and I are going to Whitby for a few days next week before he starts his clinical trial , may see you.

Love Sue

[MinParticipant]

Hi Susanah
Im really interested as indeed will others on here in the same position as Gordon and Sarah. My husband is what I thought of or think of as at the last chance saloon. Having has a failed sct, velcade and revlamid. All of which worked for a very short time. His current treatment fills me with dread for what happens next. But it is remarkable to hear of someone in your husbands position.
What treatments has he had and how long did they last? what kind of mm does he have? Does he have bone damage and or kidney impairment?
Sorry for all the questions but you have given me hope.
Min

[zasrsParticipant]

Hi All & Sue Min Bridget Dia Eve Joe Mavis Gill and Min

thank you so much for all your posts. to try to answer some of your questions, i dont really know which mm gordon has, but he was dignosed over 9 years ago and after his 1st sct had 6 very good almost pain free years. he does not appear to have any kidney or bone damage and no tumours seem to rearing thier ugly heads. when i read other post here i realize how lucky he is not sure he would agree as he is understably very angry dex really helps, not!
i am not sure what our lovley consultant has decided drug wise we pick them up on sunday!!

I will look out for you sue in whitby if you see two people having a row it will be us and the dex!!!

love to you all

sarah xxx

[DizzylizParticipant]

Hi Sarah

Sorry to hear Gordons second sct didn't work! although kevs on his 1st it's always a worry, they are doing great things with all the drugs and I'm a big reader of the forum and take note of all the good things you all write and take comfort from it all, hope it come right keep positive and I'll be thinking of you both on your break!

Enjoy love liz xx8-)

[susannahParticipant]

Hi Sarah Michael doesnt start with the dex until a week on Friday otherwise you would probably her us shouting. When i here the word dex i freeze Michael has such a reation to it, i dont mean rashes etc but a personality transplant, hes such a nice man, bit that horrid stuff changes him completley.

Hi Min Michael has had Velcade, but not good results came off after 3 courses, Revlimid much better. Starting Bendamustine, Thalidomide and Dex in a couple of weeks. Consultant did say if any problems there is also Pomalidomide he can have, so we do have a life line at the moment. He does have extensive bone damage in his spine skull and ribs, had to have many hours of radiotherpy but he gets about ok. He has 2 types of MM but no kidney damage Hes so positive about all his treatments thats probably his way of coping, im different I walk miles with my dog talking and sometimes have a good cry,otherwise I dont know how I would cope.

Dont be sorry about the questions Min only wish I could help more

Take Care
Love Sue

[KeithH17Participant]

Hi Sarah,sorry to hear Gordon's PP's are rising and therefore his 2nd sct has failed.
I hope that the new drugs do the trick and achieve a long remission.
I have not been feeling too good since I finished the last cycle of Velcade 2 weeks ago and I go for a 2nd sct on 2nd Aug.
It's been 3 years since my original diagnosis and I'm just sick of the whole thing now.
Hospital visits having needles stuck into you all the time does get me down at times but then again there's always someone worse off.

Hope things turn out better for you both and you give this disease a good hard kicking.

Best wishes Sarah…Keith.

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