[peterlParticipant]

Dear Helen and David,

Thank you for your posts.  As you clearly point out Helen, the problem with Myeloma is that it is very individual, so drawing conclusions is difficult.

The only way around this is to look at bulk evidential data, over a period of time, and realise, that with a good degree of confidence, one’s particular circumstances sits somewhere within that distribution of data.  In fact I suggest that many of the NICE treatment plans result from long laborious analysis of such data.

Put another way, let’s be outrageous and assume data shows that every Myeloma patient ‘pops – their – clogs, exactly 20 years, 1 month, 1 day after first diagnosis!  Given this information, a new patient may readily decide upon his/her fate – with a high degree of confidence.  Of course, the real world isn’t so neat, and we are left with trying to spot where we are on the distribution of numbers.  Which in itself is a difficult exercise, especially when much of the data is historic and the treatments with new drugs are advancing so quickly.  My doctors make frequent use of such historic data, since it’s the only thing that gives them a broad brush picture of results so far.  So we’re in that game.

My dialogue with my consultant is okay, but she tends to be very busy, precise and a bit formal, and it’s the kind of exchange that it’s best to be as prepared as possible for, so I can get a possible view for the future.  Hence my posts regarding definitions – it’s best that my consultant and I are talking from the same chapter, let alone the page number!

Thanks again for your posts – will look at ONS David (tnx again…)

Peter

 

 

[jillsParticipant]

Hi Helen,
Sorry for the delay but no problem with giving you Mum’s numbers. When she was diagnosed in 2007 (age 79) her PP was 39 and light chains 10,000. CTD made them reduce to PP 11 and light chains 1,500, they never got much lower than that but it was enough for a plateau as they stalled for about a year or so with no treatment. Next came Velcade and the light chains only went to 5,000, and after Revlimid the same although she had to stop that due to the impact on her immune system. The PPs were 45 and light chains 17,000 when she started Pomalidomide earlier this year but it didn’t have much of an effect so that was stopped after 3 cycles. She is currently on Mephalan, Prednisolone and PPs are 44, light chains 10,000 after one cycle. Despite the high light chains her kidney function is fine and we are continuing with this treatment, they may add Thalidomide.
So she is a 8 year survivor even at the age of 86 and her readings are not that different from 7 years ago!

Hope this helps,

Jill x

[jillsParticipant]

Helen,

Sorry I should have also said that she had more than 10% myeloma cells in her bone marrow on diagnosis. I don’t think we got a precise number from the consultant.

All the best,

Jill x

[hcp1Participant]

Hi Jill

Thank you for sharing your mums results. Hasn’t she done well!

It proves yet again that we are all different. My head spins when I try to work out what published data and fellow patient experiences can tell me about my own myeloma. I’m quickly reaching the stage where I feel I should stop looking for answers……  (That’s if I can resist the temptation to google and read just one more website, one more publication, one more blog, one more discussion forum!)

Sending both you and your mum my very best wishes

Helen

 

[peterlParticipant]

Hi Jill,

Thank you for posting such a comprehensive reply regarding your Mum – who I consider to be a brilliant example of treatment and response, and at 86 years, a great record – and long may it continue, and my very best wishes to her.

I believe the strength of this particular www is that personal accounts (like your Mum’s), can ‘colour’  the ‘grey mass of statistics’ and can be very helpful to readers.  It’s the difference between real experience and a number, in a mass of numbers.

I know we’re all different, but there’s no substitute for personal experience.

Best wishes,

Peter

[peterlParticipant]

Hi Helen,

I know I tend to look at trends/statistics/data, to try and work out/agree the possibilities for future treatments and side effects for me (personally).  It’s also the hospital environment that I’m in.

But I would definitely caution against widespread use of the web for information.  I’ve found that some sites are irresponsible, scary, out of date, conflicting and some – pretty much useless.  I don’t use Google or any other search engines.

I only tend to look at UK sites (eg: NHS, NICE, CancerRes and of course this one).  And on this site, I find personal contributions (like Jill, regarding her Mum) very beneficial, and notwithstanding the fact that having myeloma is a very individual experience.

Best wishes again,

Peter

[hcp1Participant]

Hi Peter

I totally agree with you and am very aware that visiting certain websites can be dangerous! MyelomaUK is the one site I trust, the rest I may read but always return to this site for honest and accurate representation of the facts. At the moment my mood changes daily. I swing between accepting my situation, having utmost confidence in those looking after me and believing that I will be the patient who defies all statistics to obsessively searching for unattainable answers to impossible questions. I am finding this period of time (following five months of VDT and Before HDT/SCT, due on 16th Nov) the most testing so far. I feel as if I am in limbo. I didn’t think I would ever say it but I miss the regular hospital appointments!

Jill, as Peter said, thank you for your detailed reply. My 3,500 light chains now feel small in comparison! It also shows that the number of light chains don’t necessarily dictate the percentage of myeloma cells as our ratios between the two are so different. Did your mum have follow up bone marrow biopsies or just the one at diagnosis? Your mum’s 8years has given me confidence that it will be possible to plateau for a period of time and that there are many drug combinations that can be used.

best wishes to you both

Helen

 

[peterlParticipant]

Dear Helen,

Thank you for your prompt post.

Believe me – you are not alone…  Trying to manage myeloma is trying to play chess in a fog and not even being sure of the rules.

I reckon the vast majority of myeloma patients experience your thoughts exactly.  I know I do.  I definitely do – frequently (and so does my wife!).

It’s been great talking to you, Jill and David on this particular topic.  And my very best wishes to you, for your forthcoming SCT.

Peter

[jillsParticipant]

Hi Helen and Peter,

Glad you found the info on Mum helpful and encouraging. She has done incredibly well and even surprises the doctors.
Mum has had a follow up bone marrow biopsy a couple of years ago but the results were not very useful – she has less than 20% ‘useful’ bone marrow cells but this is not uncommon at the age of 86. It does mean they have to avoid some of the more vigorous treatments like Bendamustine as this would probably polish her off (the doctors words not mine!) Even Mephalan is quite tough on the system so she has to be monitored quite closely and is on quite a low dose. At her age it is about maintaining a good quality of life and preventing problematic symptoms. However, she has never been denied any treatments on the basis of cost – thank goodness for the NHS.

All the best to you both,

Jill

[jeff605Participant]

Hi, an interesting Post. I am in the situation of hopefully being offered a reversal of a stoma I ended up with after an emergency operation last year. My myeloma is in partial remission, and stable at the moment. To have this operation I shall need to come off Dex for a month or so, the surgeon flatly refuses to carry out the operation while I am taking it, which is a bit frightening. If offered it, I shall have to evaluate the obvious benefits against post op problems which can and do occur, recovery time, and – how long have I got left, which is so difficult if not impossible to estimate I am gathering from this post, and previously information gathered. Looks like it might be a heads or tails decision!
Having Dex problems ( I am on Dex and Lenlidomid, 18 cycle, P/ps at 1.4 ) so will finish now, go to bed and think this over – and over – and over. Good old Dex !!
I am in a much older age group than those of you going to have or having S.C.T. and wish you all success with this arduous procedure . Jeff

[avantrompParticipant]

Hallo Jeffery
My experience might help you to come to a decision. I was put on lenalidomide nearly 7 years ago when it was used as a single agent, not combined with Dex. No sct for me because I was seen as too old at 66. Although mm is detectable via pp in my blood I have been stable for years and my pp has never been lower, at present .5gr/ltr. I take 7.5mg lenalidomide.
Good luck with your difficult decision.
Annette

[peterlParticipant]

Hello Jeffery and Annette,

Thank you both for your posts — I’ve been away in Dorset for a very stormy 10 days, without broadband, so haven’t been on myeloma.uk.

Jeffery:  I can’t really comment on your operation, but I’m on dex and Velcade (once a week now, on a Tuesday, cycle 6).  And all I can say is that initially, I underestimated the effects of such powerful drugs.  When I was on chemo twice a week, I never really ‘came down’, from the effects of the steroids, but now (once a week), I tend to go ‘cold turkey’ around Friday, Sat and Sunday…  Not nice.  But don’t get me wrong, the actual treatment, re the mm, has been astonishing.  The light chains being reduced from > 10,000, down to single figures!  So far.  What future blood tests will show — I have no idea.  I know this doesn’t help, but it seems to me that dex are very useful, and powerful drugs.

Best regards, and wishes for the future,

Peter

Annette,

Well done with your long term stable response.  And long may it continue.  Can I ask how long it actually is?  I’m also 66, but unfortunately, my ‘frame’ is not as healthy as it was 10 years ago, so sct is out of the question for me.  So it’s 8 full cycles for me, with hopefully a long plateau period.

Very best wishes, and thank you for your post.

Peter

 

 

 

[avantrompParticipant]

Hallo Peter
I was diagnosed in Feb.2010 and at the age of 66 was not considered eligible for sct. I see my arithmetic was a bit off and I have been treated for mm for almost 6 years. I went onto a trial (Hovon 87, in the Netherlands) so that is why I received lenalidomide straight after diagnosis. This is the only medication I have received (apart from the chemo) and although the trial is long over and the results published I continue to be treated under the protocol. Happy to answer if you have any questions.
Annette

[peterlParticipant]

Hello again Annette,

Thanks for your post – and well done on your great response to treatment — especially after  the sct being declined by your doctors.  In fact speaking to consultants and oncology nurses at my hospital, there are so many new treatments in the pipeline (months, not years away), that may seriously compete with the rigours of sct, as a new standard treatment.

It’s also really encouraging that so many posts detail very long plateau (remission) periods.

I do hope that you (and all the other contributors) in this section, stay in touch, and describe how you/they’re getting on.  And if it’s okay, I may well ask you more questions in due course.

Many thanks again for your post, and very best wishes,

Peter

[hcp1Participant]

Hi Peter and all other contributors,

I think I described in an earlier post that once I stopped my course of VTD my light chains began to increase. Consequently, my SCT has now been postponed until the new year and in the meantime I am having two cycles of ESHAP. I was admitted to hospital on Monday this week to have a Groshong Line fitted to make it easier to receive the treatment. I started on Tuesday having various drips, three at a time on occasions and two of them last twenty four hours! I will finish around midnight on Saturday so hope to be allowed home Sunday.

All this extra chemo will mean I will go into the SCT with the lowest readings possible hopefully resulting in the best outcome. Like you Peter, it is greatly encouraging to read of the lengthy plateau/remissions achieved nowadays. I was also pleased to read the fantastic response you have had to treatment bring your light chains down so low!

Best wishes to you all

Helen

[Author]

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