[christinepughParticipant]

Hi All

A quick update since the one in June. Chris's pp's are now at….4 they dropped from 12 to 5.7 in two months, which 6 months after transplant was quite a surprise. Chris is now waiting to have a mini allo in Jan from an unrelated 10/10 match donor. He has been chemo free since his transplant in March, back to work since summer for 3/4 days a week and feeling well apart from bouts of tiredness. The temptation is to wait it out and see if he could get some decent remmision for a while but his myeloma has been so hard to treat previously that we are scared that if we don't take this opportunity now he might miss the chance if he relapses later.

Christine X

[christinepughParticipant]

Thanks for the messages guys, much appreciated.

Megan, his neuropathy is better than it was but it's still there in his feet.Good days and bad. He gradually weaned himself off the pregablin as he felt it wasnt really giving him relief from the pain but felt really foggy. He reduced down to 150g per day and said it didnt make the pain didnt increase yet felt much better in himself.

Maureen – great to hear about your husband, I hope he goes from strength to strength.

Christine XX

[christinepughParticipant]

Hi Megan

Thanks for the message, yes a bit of good news for once. The neuropathy is still there but bearable. Chris decided along with approval of our consultant that he wanted to reduce the pregablin and see what the difference would be as he felt several side effects that bothered him, lack of concentration, forgetfulness and generally foggy that he put down to the drug.

He reduced over a number of weeks down from 900mg to 150mg per day and said it hasn't really made any difference but the clarity of mind has been greatly improved.
Tiredness is his main gripe really but I guess this is part and parcel.

Hope you and Phil are doing well.

Christine X

[christinepughParticipant]

Hi All

Just a quick update. Following my post in June to say Chris`s pp`s had dropped to 14, his appointment last Friday showed another drop to 12 !

He doesn't have to go back for two months, which is the longest break he's had to over a year.The feeling for now is that as long as the levels are going down no treatment at the moment.
So despite the declaration of failure back in May it appears the men in white coats don't know absolutely everything ! The melphelan is still reducing his pp`s 4 months after SCT.
Chris is back at work a couple of days a week which has been a brilliant boost mentally. He still gets very tired but managed a week in Florida convalescing at his Aunt,s house which did him the world of good.
His immunity has held up well, no infections since he came home from hospital after the SCT.
A good friend is doing a cycle ride London to Paris for Myeloma UK in August and we are going to join him in Paris with his wife and another couple of friends which a couple of months ago we wouldn't have thought possible.

This is yet more proof that this is such an individual disease and at times is impossible for anyone to predict with any accuracy what is round the corner.

Love to You all

Christine X

[christinepughParticipant]

Hi Kim

Wow he has been through the wars. You will find great advice and comfort from people on this site, keep coming on you mustn't be alone. I can only echo the advice from Megan. Chris is six months on from the onset of PN and the symptoms are definitely much better. He has been taking Alpha Lipoic Acid and Acetyl Carnitine and has noticed some improvement. He has also tried acupuncture which he stopped when he had his SCT but he is going to have another 4 sessions to see if that helps. He is back at work two days a week which at one point when the PN was so bad we never thought he would return to work at all.

Good luck and let us know how he gets on.

Christine X

[christinepughParticipant]

Hi Kim

So sorry your husband is suffering, I know exactly how that feels.
You don't mention what stage he is at with treatment. Is he in the middle of chemo now ? Normally they monitor PN quite closely. In my husbands case it didn't start until after he finished his last cycle so too late to reduce the dose.
Get straight on to his consultant as if it's severe they should prescribe something pretty quick, unless he has any other issues.
Chris was put on Pregablin which does take several weeks to take effect and the dose was increased steadily to try and get on top of the pain.
Where is the pain and what is it like, cold, numb, shooting pains ?
Keep in touch Kim and let me know whats happening, I'll help as much as I can.

Christine XX

[christinepughParticipant]

Dai

Great news, so pleased for you both. I'm sure the next cycle will bring more of the same.

Christine and Chris X

[christinepughParticipant]

Hi Wendy

He didn't say Chris wasn't eligible he just said it wasn't available. I will ask him next time we go, but Ellen has also posted some info.

How come you are not eligible for Pomalidomide ? I think we will see someone else when Chris is ready to start treatment, just to see what direction they would go in.

Take care and keep us posted.

Christine X

[christinepughParticipant]

Hi Ellen

Thanks for posting the info. Dr Cavet didn't elaborate as to why but thanks for explaining.

Christine X

[christinepughParticipant]

Hi Wendy

Yes Dr Cavet,we have felt confident up until now but think its worth getting another perspective for the next step. We asked him about Carfilzomib and he said its not available yet Ellen from myeloma UK said it is, so conflicting info. The plan is to do nothing at the moment as the numbers are dropping and he is well but we know it wont last so will be thinking about the next step very soon I imagine. Dr Cavet has suggested Pomalidomide.

Christine X

[christinepughParticipant]

Thanks Tom

It's a shame because we like him but just feel a bit let down recently. It must be all in a days work at times for the Dr's but like you say its not a trial run for us.

Christine x

[christinepughParticipant]

Hi Pat
Chris isn't on any treatment at the moment, and we've ran it by our consultant but that does surprise me because they actually prescribe it to be taken with velcade regimes in the USA ?? Blimey we don't half have contrasting advice given sometimes don't we !

Thanks Pat and hope you are feeling well.

Christine X

[christinepughParticipant]

Hi Guys

A quick update. We went for our first appointment since the bomb was dropped and had a pleasant surprise ! Chris's pp's have dropped to 14, the lowest since diagnosis. After the declaration by our doc that his sct had not been effective in reducing the myeloma and in his opinion would not reduce beyond that point (Day 58) it would appear he was wrong. We had a dreadful few days following that appointment and I feel annoyed that he didn't leave the door open for news like this.He was also very matter of fact about it and only mentioned it towards the end of the apt as if it was a minor detail !! Chris has been feeling very well lately, energy good and his counts are responding well now after a shocking start. The test was he went back to work last week for a couple of afternoons which he loved.

So we are happy that there is some hope for the future and will grab any good news with both hands as it has been very thin on the ground but are seriously considering a change in consultant.

(Ive got some info re peripheral neuropathy which I'm going to post under side effects also if anyone is interested further you can contact me via our blog christhebarbers.wordpress.org.uk )
Christine xx

[christinepughParticipant]

Hi Andy

Great that your posting from Greece, we are in need of some sun, as soon as our son finishes his GCSE's we might take off.
Surely there will be a drug that will crack through that stubborn exterior for both of you. There has to be. Chris's pp's are very similar to yours. You say you had a very high plasma % at one stage ? Did that just reduce with treatment?

Are you managing to work ?

We've had an email from Ellen from Myeloma Uk to say that Carfilzomib can be applied for as a stand alone drug not part of a trial this is a compassionate access scheme your haematology has to apply for you. Dai this may interest you.

Living for today is the best bet I agree, just training you brain to do that is a bit harder but we are trying hard.

Good luck

Christine Xx

[christinepughParticipant]

Dai

You are a bit of a superstar on here and I'm grateful that you have taken the time to post. Yes we are still reeling from the news and and after hours of looking last week, I stopped trying to find anyone else who had been in this situation because like you say it's pretty unheard of.
You mention about his regime stopping but we ran out of drugs ! The sct was used pretty much as a form of chemo to try and get the pp's down. I wish he hadn't had it now obviously he would be in a stronger place physically to try something new.
Chris desperately wanted the full allo he believed with his tenacious myeloma and chromosome abnormality that to hit it big and chuck someone's else's cells in was his best shot. But the powers that be decided it wasn't to be.
I've had a quick look at MUK 5 but seem to remember no more than 3 lines of previous chemo ? Hope I'm wrong.
Chris has been amazing through this whole process and above all he so deserves a break, not a massive one just a small one will do.

Thank you again for your wonderful words which are a great comfort as all the messages are. I'll keep you posted.

Christine Xxx

[Author]

Posts