[specofsandParticipant]

Hi All,

It just struck me as darkly funny how I haven’t visited the forum very often since going into remission but soon come back when I relapsed.

I have had 11mths. remission after my SCT, just at a point when I was really starting to feel a bit like my old self physically, I remember being told it will take up to 2yrs. to get to be as good as you can be following a SCT. My paraproteins began at 3 then 6 & now 10.8, treatment suggested now is for maintenance purposes & would consist of Revlimid & Dex for however long the squatters can be held at bay.

1st question is the obvious of what are peoples experience of this regime.

2nd is how high can the paraproteins go before treatment has to begin or are there no upper no.s & just get treatment started? I ask this because a contributor on another topic stated he was doing well with paraproteins at 45?

3rd does anyone know what significance light chains of 0/normal is on diagnosis & also still at 0/normal now with my paraproteins at 10.8?

Really would appreciate any responses.

Thanks.       Ian.

 

 

[avantrompParticipant]

Hallo Ian
Go into it with confidence. I was diagnosed almost 8 years ago aged 66 and was told that a sct was inappropriate for me. I went straight onto Revlimid 7.5mg. and in all that time I have been able to enjoy life to the full. I was never in recession but my m-protein remained around .5gr./L. The numbers are now very slowly starting to rise so I’ll soon have to go onto another regime. I’ll be happy to answer any questions you may have.
Annette

[specofsandParticipant]

Hi Annette,

Wonderful to hear your MM has been under control for 8yrs,  really good to hear, as for your numbers rising I wish you the very best in regaining & maintaining that control.

It has been suggested my starting dose would be 25mg & adjusted accordingly if I respond badly for whatever reason, this may be my dose for approx. 1 yr. after which it could be reduced to around your dose of 7.5mg.

As with my 6 cycles of VTD & SCT I will begin this next phase positively but realistically, I can but hope my next treatment regime suits me physically & brings the ‘squatters’ under control as in your case Annette.

Regards,

Ian.

[avantrompParticipant]

Hallo Ian
I had better tell you more about my dose. I went onto a research study and under its protocol I first received 10mg. Revlimid. I couldn’t tolerate it. My upper body became covered in blotches and all skin peeled. I was like a walking snowstorm. My consultant then reduced the dose to 7.5mg. He also said that my initial response was a good indicator of its effectiveness. He was certainly proved right. I wish you all the best. Let us know how you get on.
Annette

[susantrParticipant]

Hi Ian

I have always been told it’s not about kappa/lambda values but the ratio. You can have normal kappa/lambda but if the ratio is abnormal it would signify disease activity. Also, you can have increased kappa/lambda but if the ratio is normal the increased values could be down to ckd or inflammation.  I have lambda light chain disease, so never had a paraprotein, however 5 months after sct I developed a paraprotein of 6.6, + increased kappa/lambda, but normal ratio and was told that I had relapsed.  5 weeks prior to that I had been told I was Mrd negative, so I was devastated to say the least.  To cut a long story short I challenged this, but all the time the paraprotein (several IgG kappa, IgM kappaand IgG lambda – if memory serves me correctly) increased, the highest level being 9.7. However further bm showed mrd negative and so did PET/CT and then I was told I had oligoclonal banding, which I have to this day. Sometimes it increases, sometimes decreases.

Also, I have read some people can live with fairly high paraproteins without bone damage, but others can have low paraproteins but with bone damage. So, indeed this is unfortunately an individual disease. I probably have not been very helpful, but keep positive and I hope all goes well for you.

Susan

[specofsandParticipant]

Hi,

Thanks again Annette, I was thinking you might have been on some sort of trial because of being on Revlimid for so long, I will post when I get started on said treatment.

Susan what can I say, your knowledge appears very good indeed or else mine is particularly poor.

Thank you for your input, you have certainly included some useful information, for others as well as myself. I will keep positive going into the next treatment but what I am getting from other MM sufferers is how very individual the disease is to each person, so different in presentation & particularly changeable in so many ways. Thank you for your responses.

 

[peterlParticipant]

Hello Ian,

Your post says that while you have slightly a increasing paraprotein level, your light chains (LCs) at diagnosis – and now, are very low – effectively zero as you’ve said.  In these circumstances I certainly wouldn’t worry regarding LC effects, and the niceties of the kappa/lambda ratio – which don’t seem to apply in your case.  My situation is exactly the opposite!  I have no paraprotein spike (in the graph), ie, no abnormal levels of paraproteins.  Unfortunately, of the two versions of LCs (lambda and kappa), my lambda LCs are the culprits, and before treatment (at diagnosis) were very high – but now under control.

If you’re interested – the kappa/lambda ratio can be used at diagnosis and can show which LC is the problem.  So mine is lambda (the involved LC), and in these circumstances, the kappa LC (the uninvolved LC) has no effect.  In LC myeloma, only one of the LCs (lambda or kappa) causes the problem, and the other has no effect.  And although the ratio is of academic interest post diagnosis, it seems that at a practical treatment plan level, it’s pretty much ignored…  I’ve had two MM consultants, and they’ve both concentrated only upon the primary measurement value, ie – the absolute value of lambda LCs in the blood (mg/L), as measured by a blood test.  The normal range (for lambda LCs) is 5.7 to 26.3 mg/L.  Lastly, I’m sorry, but I have no information regarding what levels of paraproteins will trigger treatment.

Good luck,

Peter

[specofsandParticipant]

Thank you for your information Peter, very interesting, recent bloods were taken from me on Thursday last and my Consultant will be giving me the results on Tuesday via a telephone consultation as we will be in Cromer for a few days, which again reinforces what she said about there not being great urgency to begin Revlimid/Dex just yet.

As has been said many times MM is very individual to us all & I hope I will be able to ascertain my Consultants plans for me on Tuesday, my feeling is that a lot will depend on my current Paraprotein levels & how quickly the squatters are trying to re-populate me.

Cromer crab & fish/chips here I come, first things first.

 

[susieParticipant]

Hi Ian

I’m at first relapse and my paraproteins have been rising very very slowly over the past two and a half years since finishing induction Revlimid etc.

The MDT at the main hospital apparently said I was to be treated again when the PP’s reached 50. It got to 54 and I was started on velcade, melphalan and prednisolone. I’ve just finished cycle 3 and have 3 more to go. It worked very well with the first two, but the pp’s seem to be leveling so I just hope its not becoming refractory.

Best wishes

susie

[peterlParticipant]

Hi Ian/Susie,

Ian:  If you go onto Rev/Dex, please tell me how you get on.  And just as important — have a great time in Cromer, and enjoy your fresh crab!!

Susie:  Some very useful information regarding PP levels triggering treatment.  I wonder if the value of 50 is uniform across all trusts?  Be nice to think so.

Good luck all,

Peter

[tonyfParticipant]

Peter, thats a very good question, where do the pp levels have to reach before treatment is triggered.

I had my second SCT in March 2016, pps were undetectable for ages, no drugs no treatment, currently they are at 2.6, consultant didn’t seem that bothered, she says that readings below 5 are unreliable! Come back in 3 months time, with a 6 week blood test.

Might just ask the question next time I’m in.

Regards

Tony F

[specofsandParticipant]

Hello All,

As you might expect Cromer crab & fish&chips were superb as were the settings & Norfolk generally.

I spoke to my Consultant on Tue. as planned & she told me there is no definitive level of Paraproteins that will trigger any given treatment.  Each & every patient will be judged on their particular MM presentation & medical history, both MM related & generally.

For myself it goes back to how I presented when diagnosed, what pain I was experiencing & what bone damage had taken place.   Then, my Paraproteins were around 26, there had been damage to 3 vertebra & the pain in my lower back was quite bad but manageable.

My Consultant felt that we should not take the risk of waiting too long before beginning Rev/Dex because we may end up in a position where we wished we had begun earlier with myself suffering, potentially, unnecessary pain & damage from the ‘squatters’ progression.

My Paraproteins from last weeks bloods are now 12.4, from 10.8 4wks ago, & thus we have agreed to start Rev/Dex on the 14th Nov.’17,  I hope the Paraprotein info. is in some way helpful to others but as said there do not seem to be many hard & fast rules to MM.

Regards & Be Lucky,

Ian.

 

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