[tonyParticipant]

Hi all
I am relapsing after my first myeloma treatment and would like your comments on possible treatments.

History first. At my annual eye test at the beginning of September 2004 my optician spotted, what she thought was signs of a bleed in my retina. This turned out not to be the case, but as a precaution my GP asked me to do a urine test to rule out diabetes. The urine test showed abnormal levels of protein and a subsequent blood test showed my serum creatinine was above the normal range. After visits to eye and kidney specialists, out of the blue came an appointment to see a haematologist on 8th December 2004. I had various tests including a bone marrow biopsy and at 17:00 I was diagnosed will asymptomatic light chain myeloma aged 53. I had no symptoms and felt fine, but because of the condition of my kidneys I needed to start treatment straight away.

A few days later I was enrolled on the MRC Myeloma 9 clinical trial and started CTD as an inpatient at the local hospital in Colchester. All went well and I was discharged in time for Christmas and back to work in the New Year. CTD treatment was straight forward but I still had a trace of Bence Jones protein the urine prior to my Auto Stem Cell Transplant in June 2005 at Barts. Although my stem cell collection went well I wasn?t allowed to freeze any and all were put back on June 16th 2005 (my son held the bags of stem cells during the transplant). I was sick as a dog after the melphalan but ok for discharge on 30th June 2005. Off to my daughter?s graduation at the Guildhall in London on 18th July 2005 and back to work a week later. Still a trace of Bence Jones left after the transplant and a little peripheral neuropathy started.

Christmas 2005 received a letter from my consultant saying I had achieved complete remission. Ie. Light chains in normal range and Bence Jones not detectable. Best Christmas present of all.

Saw my son graduate at the Albert Hall (another milestone). Drove a Ferrari 360 round Silverstone and flew a light aircraft over our house. Did the Pyramids, Cyprus, and the Algarve.The best place of all is sitting on the veranda overlooking the Amstel in my sons flat in Amsterdam. (watching all the girls go by on their bikes) and a close second is sitting in the garden on a beautiful spring day like today.

Roll forward to February 2009. Light chains had started rising from August 2008 and my consultant expected to start treatment during 2009 and following some discussions agreed on Myeloma 10 trial. In August 2009 the myeloma took a rest and February 2010 my consultant expected to start treatment during 2010. In May 2010 my light chains were 400 and we were looking good with no symptoms. In August the Myeloma had took off (Light Chains 800) and consultant getting twitchy. On monthly bloods and 24 hour urine see consultant in October 2010. In October though still no symptoms agreed to sign up for Myeloma 10 trial and start treatment November 22nd 2010.

On the 18th November 2010 I was due at local hospital at 14:00 for 2nd attempt at Picc line (1st failed on 10th November 2010) : Consultant rings at 12:00 (I am driving a Volvo loading shovel 6 ton of ballast in the bucket) Bone marrow and blood tests done on 10th November 2010 suggest we can wait till after Christmas 2010. I could go ahead if I wanted but rather have a good Christmas.

Last light chains reading in March 2011 was 700. Recent 24hr urine collection shows 1 gram of protein which is significant. I had an urgent blood test which showed my kidneys are stable. Consultant wants to discuss treatment again on 4th May 2011.

My consultant has always said we wouldn?t start treatment until I start showing clinical symptoms. As yet I still have no symptoms. But as the numbers get higher he worries that the kidneys could go quite quickly.

My thoughts on treatment:
Allo stem cell transplant is not an option as 2 brothers and 2 sisters are not a match and I am too old to persuade my consultant to risk an unrelated donor transplant.
Has anyone done CTD followed by Auto Stem Cell followed by CTD and a possibly a 2nd auto transplant? This is my preferred option but can?t get any support.
On myeloma 10 has anyone had the Cyclophosphamide consolidation and how did it go? I guess I will go for myeloma 10 as at minimum this gives me velcade + a go at stem cell collection with another chance at auto transplant later. The other option is velcade + attempt at auto transplant now.
Anyone managed to get revlimid induction prior to 2nd auto transplant? (and how)
Any thoughts or other suggestions?
Thanks for listening.

[brochoParticipant]

Hi Tony well you certainly didnt have to rush into treatment which can only be good ! I was on the Myeloma X Trial last year and on the Cyclo arm It was ok , the usual side-effects but manageable However within 3 months I had relapsed again so needed more aggressive treatment and came off it Have you checked out the Myeloma XI Trial , there are a few people on here taking part , I can only remember Debs at the momement Good luck in whichever treatment you go for Bridget

[eveParticipant]

Hi Tony

Wish I could be of some help but your are in front on this journey,the help line can most help you here its worth a call,she can also put you in touch with some one who has had the same treatment.

My partner is on MX1 trial he has the ctd side,what the trial offers is if ctd has little effect it is next round of drugs not on nhs list.I felt we had no option because his mm is advanced.MX1 trial is for people who have no chemo in other words fresh blood,we had decide very quickly,as he was very ill at the time with hypercalciumier and akf.

Let us know how you get on as it helps people who are behind you on this journey best wishes eve

[kaychappersParticipant]

Hi Tony
I am on the MX1 trial. I got the CDT arm and had three cycles, just started my fourth. However, they believe I have plateaued and will probably be radomised for either velcade or straight to Barts for STC. Looks like they are in no rush for you which as Bridget says can only be good news.

Good luck Kay

[tomParticipant]

Hi Tony

Sorry but you are way ahead of me so cant add anything apart from saying good luck in the treatment you get?

Tom

[AMcGuireParticipant]

Hi Tony, hope you are keeping well.
I'm Angelina, I've not posted anything on here for almost 3 years now … my husband John has managed to stay in remission till recently so I'm back on here now reading everyones stories.
John was in a bad way for months till he was diagnosed in December 2007 with both MM and Amyloidosis. He was given the CTD treatment and after 6 months he achieved remission (he wasn't expected to survive the 6 months actually as he was so ill). During treatment he was a poor soul, broke 7 vertebrae and his back crumbled. He lost 5 inches in height and 6 stones in weight and wasn't expected to live with everything going wrong for him, kidney damage too with the amyloid deposits. However, against all odds he's still with us after 4 1/2 years.
He has now relapsed for the first time, like yourself. For the past 2-3 months he's been on Velcade with dexamethasone. Last week he fell down the stairs at home, he's been ill in hospital since. The Velcade has caused very bad diahhorea and also nerve damage (not to fingers and toes like thalidomide though) – currently he's not sure when he needs to pass urine, and when he does pass urine he's not sure whether he actually has or not. His consultant has now stopped Velcade. His blood pressure is very low (as is his mood and outlook on life presently).
I met with his consultant a few days ago to discuss the future. If John can get stronger then they want to tackle oral chemotherapy at home (I would like this very much), Revlimid is the tablets they want to start John on when he is feeling fitter and stronger given how much chemotherapy sucks the life from you. I asked about SCT and like you his brothers/sister are not a match, as well as that at age 52 John is considered too old and unfit for such treatment.
I do hope they will start Revlimid very soon, though I have been told th prepare for sudden death?! How on earth do you prepare for a sudden death. I will let you know how he goes, I am very much hoping he gains strength and gets started on something.
Sending best wishes xx

[brochoParticipant]

Hi Angelina what a tough time you are both going through but reading your post its obvious that you and John are fighters to have got through such a hard time in the beginning Although your husband has mm I am sure your strength has helped him to get back on top and hopefully it wont be long before he is home !It is definitely better to be on oral chemo at home and although Revlimid has its side-effects they are for the most part manageable and not as drastic ! Sending you both my best wishes Bridget ps please try and look after yourself too , its exhausting watching someone you love go through an illness like mm x

[AMcGuireParticipant]

Awe, bless you Bridget …. thank you so much for your kind words and caring thoughts.
I've always said the whole MM thing is like riding on a runaway roller-coaster – there have been so many ups and downs over the years and there is really not much control over what twists and turns are coming next.
Yes, you are partly right about John being a fighter, but at the best of times he's just the worst patient ever and won't help himself which can be very frustrating at times!! :o) I've been reading stories about others not drinking enough – yes, this is John too! Grrrrr …. lol John says I am the cog that holds us all together, which is true; but when you love somebody you do anything and everything you can to help give a quality of life and dignity too. We've laughed and cried together over the years, our sense of humour has got us through the hardest of times.
He's just been a poor wee soul over the years and to be honest for all the time he was actually in remission I think somebody forgot to tell his body as there hasn't really been any change. He struggles to walk, needs help with everyday things, sleeps almost 24/7 … our daughters are 5 and 10, he's missed out on so much with them although we do have a mobility scooter in the boot of the car which we use to get out together. Its just a wee shame.
Oral chemo would be fantastic, that way I can have him at home again without anyone poking and prodding. I just want to hide him away safe from everyone and do my "thing". I very much liked oral chemo before, I personally felt more in control of what was happening to him and it saved all the running in and out of hospital too.
I agree it is very exhausting watching someone you love go through MM, I feel I've done it for so long now that I'd be lost without my caring role. "The End" does worry me slightly for many reasons, but as the consultant says "one day at a time", so thats all I can do. I can't wait to get him home though, build his strength and ease him out of the depression then get him started back on the road to recovery on chemo again, bless him … what a life!
Sending love Bridget, and a healing hug too xoxo

[brochoParticipant]

Hi Angelina roller coaster it certainly is , I suppose it stops life being boring though!! Like John I lost 3 vertebrae and had surgical reconstruction , walking is difficult some days worse than others As for the pain you just learn to live with a certain level of pain controlling it as best you can. It must be very hard for you with your children being so young , hopefully it wont be long before he gets on Revlimid , the last thing you need is to spend hours waiting for drugs Keep on keeping on and heres to humour ,its got me through many a bad patch I hope you have a good weekend and dont forget we are all here for you if you need to offload love Bridgetx

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