[AV8RParticipant]

First an apology; I should have previously introduced myself in the Newcomers section. I am Stephen Pemberton aged 62, married and live near Weston-super-Mare. I was diagnosed with myeloma in October 2011 and was recruited onto the Myeloma XI trial on the intensive pathway. Whilst that meant travel to Bristol rather than to my local hospital, I felt it the best of my options.

For induction I was randomised to receive Revlimid (CRD) and a host of supporting drugs. During the latter stages of cycle 1 I developed a drug allergy which transpired to be caused by Alloprurinol. This was manifested as a whole-body rash which then became infected and resulted in 5 days in the ward just before Christmas. Never-the-less, cycle 1 reduced my starting paraprotein from 57 down to 37. Cycle 2 reduced it further down to 22 and cycle 3 down to 15. Cycle 4, however resulted in no improvement and indeed a rise to 18. My consultant then decided to take me off Revlimid and I was randomised for consolidation onto Velcade (VCD).

I have two questions that forum readers might be able to help with. Is it common for treatment, especially with Revlimid, to suddenly become ineffective? Secondly, whilst I await the results of the first cycle of Velcade, how effective is this medication?

Best wishes
Stephen

[tomParticipant]

Hi Stephen
A Warm welcome to this forum, please take your shoes of and sit back and feel comfy.

Sorry I cant answer your Q as I have not been on that, but am sure some one will be along and be able to give you the advice you need.

Good Luck on your road to remission.

Tom "Onwa

[eveParticipant]

Hi Stephen

Sorry for not welcoming you to the site earlier,as I have had a few problems myself,its my husband who has Myeloma.

They say myeloma is such an individual illness and everyone reacts different to the drugs involved,I can only tell you about Slim my husband.
he was on CTD had 6 cycles and looked if he was in remission,bloods and kappa light chains were good,but when they did a BMB his myeloma had increased to 80% in bones.
He started VDC and after 6 cycles it came down to 6%.but the only way of telling is a BMB. He is now waiting for SCT,

Other people have different stories because it,s such an individual thing,I hope this is some help to you,EVE

[andygParticipant]

Hi Stephen.

Welcome to the forum.
The important thing to remember about mm and the fight against it is that everyone's journey is different. Drugs that work marvellously for one person fail to make an impression on another. I know I seem to be in the later group 🙁 Velcade didn't work for be and now I'm trying Revlimid and Dex with my fingers crossed. It's impossible to say how you'll react to Velcade but I have read on this forum good results with Velcade I guess I was just unlucky.
Good luck with your treatment and keep us informed of your progress.
Take care
Andy

[DebsParticipant]

Hi Stephen,

Just a quick one as I have to dash out, but I am on the Myeloma XI trial and started on revlimid. After 4 cycles I also plateau'd and was randomised to Velcade. (My pp had dropped from 55 to 28 by this point). The velcade did a similar thing…dropped quite quickly in the first couple of cycles and then slowed down. I had to stop after 4 cycles though as I got quite bad peripheral neuropathy. However my pp had got down to 4 anyway!! Then I had my SCT and am now at 2.
Andy is right though…each journey is different so just work with what happens to you. But if you have any questions, give me a shout! Happy to try to help. Just watch the PN and report it early doors. I waited a bit too long to stop and it meant I had it for over 6 months before it went away. It could have stayed too. Velcade is great for what it does, but it isn't worth having long term problems with your feet/ hands.

Take care
Debs x

[AV8RParticipant]

Thanks to far to Tom, Eve, Andy and Debs. Since I was diagnosed I?ve discovered so many positive things. The value of Myeloma UK especially in terms of the information it provides and the friendliness and support of its Forum. This has been my first post and the speed of reply has been remarkable and most supportive. Tom responded in minutes and Eve in the early hours of the morning! I take on board the guidance from Eve, Andy and Debs about myeloma being such an individual illness. Debs? experiences seem very similar to mine except that, so far, I have not suffered from peripheral neuropathy.

My questions mostly reflect my frustration at being unable to influence my progress. I have spent much of my working life in controlling roles: now I have simply to be a patient and to be patient. I admit to have become preoccupied on my paraprotein levels and the journey towards SCT. It will probably be another week before I find out whether I am responding to Velcade.

I wouldn?t want anyone reading this to feel I?m down-hearted. Compared to so many other cancer patients that I meet, I?m very fortunate. I have the resources of the Bristol Haematology and Oncology Unit at my disposal. It is a surprisingly welcoming environment with a professional, committed and caring team. I?ve learnt to live around my treatment and I have few side effects.

Once I get my PP results, I will endeavour to provide a further update.

Until then, as Winston Churchill used to say, ?KBO?. Thanks everyone.

[DebsParticipant]

Hi Stephen

Just to say, I think it is TOTALLY normal to be preoccupied with your pp levels pre transplant. I definitely was, and used to phone the hospital as soon as I thought the results would be in! It is only post transplant that I have now trained myself to wait until the next appointment! The reality is that pre-transplant, you know that they are watching it to see when you are ready for transplant, and so you are bound to watch it too!

You sound like you're doing really well with it, so keep that up!

Take care
Debs x

[mhnevillParticipant]

Hi Stephen

Do hope that you continue to make good progress.

Keep in good heart.

Best wishes Mavis

[AV8RParticipant]

In my second post dated 30th April, I promised to provide an update. It took until my appointment on Tuesday to get my paraprotein result for the start of consolidation cycle 2. When I saw my consultant Dr Jenny Bird, the result was not on my notes and she had to contact the lab in order to make a valid decision. The news was not as hoped. My 4th cycle of Revlimid had been ineffective. The news was that my first cycle with Velcade showed an increase of paraprotein to 22. My MM is proving to be stubborn. It was also apparent that my platelet count is getting very low at 35. So yet another decision was required. I have been taken off chemo and will be scheduled now for SCT. I?m glad to be moving on but wonder what my current situation really means in the longer term.

On a more positive note, after my consultant?s appointment, my wife and I traveled up to stay two nights in Kew in order that I could carry out research at the National Archives. It was an enjoyable and rewarding trip. I feel well and am conscious of the support of the forum readers. Thanks to you all.

Best wishes
Stephen

[scott9Participant]

Hello Stephen

Its interesting that you started with Revlimid and moved on to Velcade. It was the opposite for me. I was on Velcade for three months and it nearly killed me. I was too ill to continue that treatment. My consultant switched me to Revlimid and that worked. My kidneys were too impaired for SCT so I am now on maintenance therapy ie three Revlimid pills per week. Doing OK so far.

Good luck

Scott

[AV8RParticipant]

Many thanks for your response Scott. Looking at your past posts, you've certainly been through the mill.

It was because I was in the Myeloma XI trial that I was first randomised onto Revlimid. At first it worked OK but the 4th cycle indicated lack of response. The trial then randomised me onto Velcade but my paraprotein did not go down, rather it actually increased. Because my overall response has been greater than 50% reduction in PP, I am now able to move on towards HDT&SCT. It remains to be seen how well I respond to that.

I note that you are now on maintenance with Revlimid. I trust this not giving you too much in the way of side effects. (Subject to the trial, I may also find myself on Revlimid for maintenance).

Best wishes

Stephen

[VickiParticipant]

Stephen,

Just read your posts and wish you well with your next stage. It's my pattern Colin who has mm. He started his pp level at 17 and his lit chains started bat 31000! (now down to 1300). I can tell you we have been obsessed with the numbers and whether they are goin up or down, in fact it's what keeps us going between appointments. Everyone has said this in an individual condition so best of luck with this stage. By the way Colin too was used to being in control and its hard to reply on others but like you we have found the medical teams to be great. Keep smiling.

Vicki and Colin x

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