[Nicola2708Participant]

hi guys, sorry not been around for a while, just been reading through the post and lools like "the B*****D that is myeloma is taking hold all over the place. Sadly dads course of velcade hasnt worked. so there starting a third stage treatment a 2nd generation drug sounding like thmilomide same sort of family as that drug. Dads praprotein levels have not reduced during the vecade and remain nearly the same as when he started it just before christmas. Doctors say they are worried as his body has not really responed to the treatment so far. And a stem cell transplant is looking very unlikely as we were told the success rate with the levels dad still has are not good. So we have to hope and pray we get something from this 3rd stage treatment.xxx

[KeithH17Participant]

Hello Nicola,I'm sorry to hear that the Velcade did'nt work for your dad.
However this is not at all unusual where this horrid disease is concerned.
You can never tell if a drug is going to work until it's tried when you're dealing with such an individual disease.
Velcade worked for me and I had my 2nd Transplant in Aug last year.
My PP's went from 14 to 2.65 but never made the magic Zero as they did after my original treatment.
I've heard of other patients who did'nt do so well on Velcade but did respond positively to Revlimid which is manufactured using Thalidamide.
I do hope things work out for your dad and that the new treatment brings his proteins down to a very low level.

Best wishes to you both.

Keith.

[brochoParticipant]

Hi Nicola sorry to hear Velcade didnt work for your dad but as Keith said you never can tell Its very possible that Revlimid will work for him even though Velcade didnt Hang in there hopefully he will start to improve with a new treatment plan Dont forget we are here if you need us love Bridget x

[Nicola2708Participant]

Thank you Keith and Bridget,

It's so heart warming that you take the time out to reply. Especially when you have so much going on in your own life's. Must admitt to have been sticking my head in the sand, it's a far calmer place to be especially after a few glasses of wine lol. It's not the revlimid it be begins with L. He started on that combination when he was first diagnosed back in August. It's quite heart breaking to see how much he continues to deteriate. The way he talks is like he's given up its hard to hear. It's hard hear.Tryed to encourage him to get out as we have a wheel chair, to take him to choose some new clothes as his stuff is all to big now, he's gone from extra large to small but has no intrest. Just keeps telling us he'll be pushing Daisy's soon. Do you think you know when your time is coming to an end? I'm thinking of going to the myeloma day in Nottingham in April. You are so brave all of you to face this everyday, I send you my love Bridget and pray there is a new treatment around the corner for everyone who needs it. Xxx

[DaiCroParticipant]

Hi Nicola,

Velcade worked brilliantly for me… I had six infusions but nearly all the good work was done in the first 2 or 3 cycles… including bringing my kappa light chains (Bence Jones Myeloma) to 0 and deleting a secondary tumour on my sternum on the way.

The downside was that as soon as they took me off the treatment my myeloma started rising again… slowly but ever so surely… and now I am on Revlimid. I went into official remission at the beginning of October… my light chains started showing by mid-November and I was declared relapsed on January 9th. I had a delay in starting Rev & Dex due to the (failed) chance of getting on a trial… so I eventually started this treatment last Monday (27th February), giving me a total remission of almost 5 months.

But I paid the price for delaying the start of treatment with new disease in my left shoulder and some moans and groans for some old familiar places.:-/

I imagine your Dad will be on the same treatment as me… if so we can compare notes. Rev & Dex show good results… if you take to it. At the beginning your white cells and your neutrofils are monitored over the first couple of months as the treatment can knock them for six. You are given anti-biotics in that time, as a preventative measure and if there are any issues the Revlimid can be reduced… but head up and thumbs up for a clear passage into the Rev & Dex relationship (my consultant says that most people find a manageable level after 3 cycles (3 months… with 3 weeks of nightly Rev followed by a week's rest per cycle – the Dexamethasone taken once a week (20 a time to start with) once a week for ever and ever (hopefully).:-)

I was brave and asked my consultant if Rev & Dex had a median, an average… and to my surprise she said yes. Apparently the median is getting better as they accrue new data (Revlimid being relatively new) but the current median is 30 months… which sounds pretty good to me and I'd take that offer if it was guaranteed.:-)

Of course medians include shorter and longer periods (I met a woman at the April 2011 Nottingham InfoDAY who had been on Rev & Dex for nearly 6 years… and she had not had a good journey up until then) but 30 months seems very good to me personally. I am very hopeful for trials drugs like Carfilzomib and it is my aim to get settled on Rev & Dex and hold on in there until Carfilzomib gets licensed and ready for my use… as well as all the other magical and mysterious other drugs and therapies out there in the twilight.8-)

As our irrepressible Tom says, 'Onwards & Upwards'… keep your Dad positive, ask him to visualise the drug working and get him to see himself sitting in a sunny park watching the world go by… feeling relatively fit and healthy.. its August 2014 and the Rev & Dex is still doing its job… visualise that every time he pops his pills… visualise, believe, savour and carry on.:-D

With best regards 🙂

Dai.

[tomParticipant]

Hi Nicola

First and formost am with you on the Wine "Red" and next I know its hard to see a loved one feel and look ill its not good to watch, but on the bright side we have a lot of people on here that went to nearly bottom then something that was tried kicked in and worked as Dai says Keep your Dad as strong as you can and keep dad as positive as you can I feel a lot of healing is done in the head, yes i have had my bad days in my road to recovery but thankfully My Young Bride and Kids kept me strong in my own mind and that helped in my recovery to remission.

Its a strange route for you and your dad Nicola but with strenth and determination it will work, I think that I lost in weight about 3 stone but it is all back (and some) on.

All the best on that road Keep Strong
Love Tom "Onwards and Upwards" xxx

[mhnevillParticipant]

Hi Nichola

Like everyone else, I am so sorry to hear about your Dad's disappointing response to his treatment and his loss of morale. It is understandable, but if yuo all continue to surround him with love, and show him you don't give in, hopefully he will begin to get some fight back.

I think, sometimes folk do know "when their time comes", BUT it is also true that feeling depressed can also bring on similar feelings.

Do hope new drug regime begins to show some results. Look after yourself.

Love.

Mavis x

[KeithH17Participant]

Hi Nicola,the name of the drug could be lenolidomide which I have been told will most likely be my next treatment although I hope not for a long time to come.
I have been fortunate that I've responded well to all the treatments I've had and it must be hard to take when a regime does'nt work as in your dad's case,given that there's not all that many that we have access to.
I know it's really difficult sometimes but thinking positive is the only and best advice I can give.
Best wishes and do keep us all up todate…you know we are all with you.

Keith.

[Nicola2708Participant]

hi
thanks for all your replies, keith it is lenolidomide. Dad(micky) was supposed to start to day when we visited out patients. Unfortunately this wasn't to be the case. Bloods showed high levels of calcium again, infection and poor kidney funtion. So instead of starting the new regime dad(micky) has now been addmitted. He cried for the first time, was horrible. Ive stayed so positive with him. saying its the best place for him, so we can get everything back under control. I don't know what to do anymore, he was so upset. Just kept repeating myself to him. Hows everyone else doing xxx

[HelenParticipant]

Hello Nicola
Hope your dad has improved when you see him next and you manage to look after yourself too. I've been on the lenalidomide for a few months now, both pre and post transplant. I'm a bit tired and had a few recent infections but it has worked well for me so far, I'll keep my fingers crossed for your dad.
Helen

[Nicola2708Participant]

hi helen

im hoping it has some affect when we get started on it. as yet a transplants looking unlikely. wont even really discuss it with us. Im scared to go see him, he always seems to get so down in hospital. how are you helen xx

[tomParticipant]

Hi Nicola

I am sure Micky will be soon sorted out, and I know that Hospitals aint that good for the rest and relaxing but it will be better for Micky as they can sort his problems out as they go along rather than re book another out paitants.

Give my regards to Micky and please tell him that I and others have been through it and came up better,

Love and Hugs to you all

Tom "Onwards and Upwards"
ps and please take care of yourself xxxxx

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