[MinParticipant]

Following CDT,in May last year a stem cell transplant and 5 months of 'remission ' from it, Peter went on to Velcade in Oct which stopped working after the 4th cycle but he stayed on it for a further 2 in case it was a blip…. needless to say it was not. Revlamid was next and after two cycles his figures dropped from over eight thousand to two thousand, more recently this has been dropping by just 40 on a monthly basis. yesterday we rang to get blood result from last week and they have shot up to over 5thousand again, the Dr could not believe it and had him in two days ago for further bloods for his Light Chain myeloma.
Just had a call to say they have risen again in a week and tomorrow he is to start on something else.
As this point the nurse did not say what the something else is… but I imagine its going to be Bendamustine.
To say we are depressed is an understatement, the choices are running out and the positivity for the treatments options with it.
What is so annoying is apart from pain from his crushed vertebra he actually feels well.
What treatments are left? anyone else had all these treatments in such a short time and finally found one that has a lasting effect.
Im desperately searching for hope whilst realising the reality of the situation 5 months per treatment seams to be the norm for him and he is weary of it.

[DaiCroParticipant]

Ah Min,

I have nothing to offer except love and support. If the doctor is questioning the results then there is always the hope that what Peter needs is something to stop the rise, be that Bendamustine or whatever.

My consultant has said that when the stepped programme of licensed drugs has run its course they will try previous courses that have been successful, such as CDT or equivalent.

You say that Peter feels reasonable so it shows that there is strength there yet – hopefully one of the novel agents will balance and then start the downward journey so they can try again with the big guns.

I do hope so. xxx

Dai.

[BADGERParticipant]

Dear Min

I am so sorry to hear about Peter my thoughts and prayers are with you perhaps a new test will show up something better they often get some of my test wrong at my local hospital so I have to retest they mentioned to me at UCH if all else fails they may go back to CDT as it worked first time
maybe this could work for Peter

Love Jo x

[nickinooParticipant]

Thinking of you and Peter, Min, and I really hope they come up with something suitable soon.

Nicki xx

[brochoParticipant]

Dear Min I can only imagine how you must both be feeling , this bloody illness keeps throwing up new challenges. Jos point was a good one they may well go back to something that worked well before If not perhaps they will try Pomaldomide ( not sure on the spelling ) , the drug that Gaye is on at the moment You and Peter have come up against so much recently Min and got through it with your determination and sheer guts so hang in there you can do it again ! Hope you can get some rest tonight ,tomorrow is another day and perhaps you can get some answers lots of love to you both Bridget x

[eveParticipant]

Hi min
You know how I have been feeling these last few weeks,and you gave me so much hope,it will all seem so different in the morning,it is the night that does this to us,to much time to think,to much to ponder,The morning will bring fresh hope, please be strong,
You told me not to give up on Slim,he is getting stronger,when things look bad we,let so many bad thoughts in,you gave me so much hope please be positive for Peter.
My thought are with you eve

[AMcGuireParticipant]

Bless you both Min.

I'm so sorry to read of your desperation. From reading the others posts it appears there may still be options available to Peter. The saving grace is that he is feeling well at the moment and long may that continue. Don't give up, you've come through too much to throw the towel in now … keep fighting and remain positive. God willing the new drugs will do the trick.

I don't have any special words that could help or make you feel better. All I can do is what I do when I'm "stuck" and thats to ask for the help of the angels … therefore I am asking Archangel Michael to stay by your sides to give strength and courage, and Archangel Raphael to bring healing to Peter and to guide the doctors to a suitable drug combination that will put things right again. They don't usually let me down.

Thinking of you both, sending healing thoughts and love
Angelina xx

[zasrsParticipant]

Hi Min
I am so sorry to read your last post, what a dreadful disease mm is it is like living on a tight rope just waiting for the next nasty! At least Peter is feeling well always a good sign:-D

I have just given Gordon yet another GCSF! He also fells fairly well his blood results say different!

I do hope the next treatment helps Peter keep stong. Cyber hugs

Sarah xx

[GeorginaParticipant]

Hi Min

I was verry sorry to read your post. I think my mum has been running a similar course to Peter. She initially had Z-dex (4 cycles) but only had a partial response. She then had velcade on a clinical trial and had a good response. She had a sct but only got about 9 months remission. She restarted velcade but the myeloma progressed before she had finished her 8 cycles. She has recently started bendamustine on a clinical trial. She has finished her first cycle but they have had to put the next cycle of bendamustine on hold due to her low blood counts.
I think like you and Peter, we have gone through so many emotions over the last few weeks (and the last 2 and a half years). Some days you feel absolute despair but then tomorrow is another day and you start to feel more hopeful and cope with what is happening. Like Peter, there are some treatments she hasn't had yet and it only takes one to work to put this horrible illness back in its place. So keep hoping and enjoy every day. I will have my fingers crossed for Peter and everyone else.

Take care and keep strong
Georgina xxx

[KWilsonParticipant]

Sorry you've had such bad news! Nothing useful to say 'cept hang on in there.

xxxxxxxx

[TinaParticipant]

Dear Min,

Please take heart, Patrick had great success from Bendamustine by this I mean it gave him almost a year of virtually side-effect free life. He too had very little success with velcade and revlimid and only eight months remission after his SCT. I do not understand why Bendamustine it is not used more widely.

I can understand how your news must be dragging you downbut there really is hope with this option and it will not be your last.

Tina X

[tomParticipant]

Hi Min and peter

Sorry to hear about treatment causing a Bloomin big blip in both your lives, I cant add nothing to the good points above as I am still in remission so can just send my Love and Hugs to you Both.

Tom xxx

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