[rosieb123Participant]

My husband was diagnosed 4 years ago so I’m not new to all this, but I guess we don’t ask too many questions. Anyhow he was brought in to hospital for a few days this week because his back pain increased suddenly. He was given an MRI and the usual longstanding lesions showed up but also his doctors letter says that ‘myelomatous deposits’ were identified. I’m trying to understand, does anyone know is this the actual myeloma cancer they are referring to rather than damage or lesions and if so how come when his light chains are only at 100. When he was diagnosed 4 years ago they were over 12000.
I’m sure I should know this by now, but I also have a sick daughter who is in and out of hospital to look after and we are inclined to just take things a day at a time.
Many thanks, Rosie.

[PerkymiteParticipant]

Hi Rosie, I have been on this site since 2009 and I have not heard of “myelomatous deposits”. Sorry, I realise that is not much help to you. That just may mean that they, whatever they are, are generally referred to as something else! You do not say whether any treatment was recommended which would give a clue to what myelomatous deposits are.

At a guess I would think they are groups of myeloma cells that the MRI has picked up. My understanding is that a Myeloma sufferer have them all over his/her body and unless they become a nuisance, when they get zapped by RT, they are left alone. Just a guess mind and some knowledgeable person will come along and correct me, I am sure, if I am off the beam.

One word of warning you can still develop myeloma tumors even in remission.

Kindest regards – vasbyte

David

[rebeccaRParticipant]

Hi Rosie, my understanding of myelomatous deposits are the MM plasma cells. I guess these deposits are not unusual Unless your husband is in stringent complete remission i.e. absolutely no trace of the plasma cells in the bone marrow. As the majority of us do not achieve this status and carry some “minimal residual disease” then it would not be unusual to identify deposits of it – as David says its if they are sufficient to cause problems that would instigate treatment.

Regards, Rebecca

[rosieb123Participant]

Thanks for your feedback. Chris levels have been very slowly rising over the last few months but I don’t think the doctor is thinking of changing his treatment just yet. We are seeing him on Thursday so can ask questions then. I feel more reassured knowing this is normal for mm patients, even with low levels. I think seeing him in so much pain just unnerved me a little.
Thanks again, Rosie

[jeff605Participant]

Rosie,You sound as though we are in a similar situation, although I am dealing with it on my own as my wife of many years died not long before *I became active, after some three years smouldering. I actually have two vertabra that have collapsed, causing some 4 – 5 inches height loss and some mobility problems. I signed the premission docs in Nov, and am still waiting for a vertobroplasty op.As you said, I probably should know more than I do. I have been on 6 courses on CDT, plateaued at 9 p/p, went onto Velcade for two courses did very little, came off every thing for 4weeks p/p up to 29, and am now on Revlimid. I have just started the second month on this with no idea if it’s working as the results weren’t available ! The registar I saw said as my report on how I was ( pretty good actually with no real side effects ) was all positive and looked so well I should carry on with it . Very professional, I thought since I probably should have asked questions at this point, but we know how it is when you are in there!! . So, I am waiting for the Doctor’s letter with anticipation. I am also distracted from my problems by a daughter with severe condition – just back after 6 weeks in hospital- and requires a lot support. I decided to take the one day at a time route too when all this started, not easy though is it
Best of luck for the future, Jeff

[rosieb123Participant]

Jeff, I am so very sorry that you have to cope with this alone, you must miss your beautiful wife so very much. Especially now your coping with your own condition as well as your daughters illness. My heart goes out to you and i hope you have people around you for some support. I know how difficult it is trying to cope with so much going on. Your right, the ‘one day at a time’ strategy works better some days than others. Chris first treatment was velcade, then BMT with 7 months remision followed by Revlimid which he has been on for 2 years now, not sure what will be next. Jeff I hope you get word about your operation soon and that the Revlimid brings your pps down into a long remision.
Regards, Rosie.

[PerkymiteParticipant]

Hi Rosie,

I was interested in your comment that “he has been on Revlimid for 2 years now”. My understanding is that the MHS gets Revlimid free after 16 or is it 18 cycles of treatment. Is this the case with Jeff he would have done 24 cycles in 2 years. And, as a matter of interest has he reached Good Remission on it or just a low PP reading?

I am on my 6th cycle as present and have reached good remission.

Kindest regards – Vasbyte

David

[rosieb123Participant]

Hi David the consultant told us it was free after 24 months he’s on cycle 25 now so I guess it must be free now. Chris’s light chains went as low as 29 they started to increase about 7 months ago so they added cyclophosphamide into the mix which seemed to do the trick, but they have started to increase again, they are just over 100 now. No one has ever mentioned remision and he hasn’t had a BMB since diagnosis so his levels are all we can go by. He gets very tired and his mobility isn’t great but I think this might be because of the medication.
I’m so glad to hear you are in a good remission . Revlimid is a wonderful drug and has given Chris 2 years with his mm under control. Our youngest child has just turned 8 so these are precious years for him, for us all.
Blessings, Rosie.

[jeff605Participant]

Rosie, thanks for a lovely reply, I really appreciate it. I’m sending you a private message, as I don’t want to clutter up the discussion page with what is really a personal matter, we all have our difficulties and problems with this rotten disease Jeff

[rosieb123Participant]

Just a quick update, we were at the hospital for his routine appointment today and the consultant is sending Chris for some radiation treatment on his back. I asked how come there are new deposits even though levels are still quite low. He suggested that they will probably increase in the next while. So I guess it’s wait and see.
Thanks again for all your replies.
Regards, Rosie

[rosieb123Participant]

Sorry meant radiotherapy, shows where my heads at at the moment 🙂

[Author]

Posts