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Sunday, 13 May 2012

Why does nothing go right for me?

I was at the Hospital on Liverpool on Friday where I got the results of my latest paraprotein levels. Guess what! They have gone up again. They were 13 now they are 23. They will probably continue to rise.

There are a couple of things that we are going to do, we being the doctors and me. The first is to increase the steroids that I am on with the Lenalidomide, I’m not back on the three day pulse of 40mg, which is 20 tablets for three days at a time. They are hoping that this will stabilise the paraprotein as the combination of steroids and Lenalidomide is the way that they manage it’s effectiveness. I’m already on the full strength of Lenalidomide, so they have changed the Dexamethasone to see if that works.

The other things that we are going to do is a mini transplant or Donor Lymphocyte Infusion (DLI). A DLI involves extracting the white cells from my Donor (My brother Nigel in my case) and infusing them into me. Nigel will have to go on the same machine he did last time that extracted his bone marrow, but he wont need to have the injection he had last time as it will just be extracting the white cells.

Once the cell have been extracted they are infused into me, the same way as  a blood transfusion or injected into me through my Hickman line. There is no stay in hospital as it will all be done on the the same day and there isn’t a need to stay in.

The plan is to do the DLI as soon as possible, for obvious reasons.

The increase in Dexamethasone will make me immunocompromised, more than I am now, and the DLI will also do the same.

There are risks with the DLI as there are with everything else. There is a 5% chance of death, which again compared with my chances if I don’t do is nothing to worry about. In very rare circumstances it can destroy the bone marrow all together (which again would lead to death). I will need to keep an eye on graft versus host disease (GVHD), I’ve not had a real problem with that so far, only with the dry skin that I use the double base for every day.

Hopefully this will work for a bit longer, at least longer than a few weeks, which seems to be the norm for me as everything I have tried has failed after a few weeks.

Going back to some other issues, the CMV doesn’t seem to be a problem as that has checked out OK from the slight anomaly I had a few weeks ago with both myself and Nigel being CMV negative, one of the results came back showing a slight CMV+. We don’t know why, but it isn’t showing now.

I’m still waiting on the Chimerism results to see if my DNA is the same as Nigels (i.e. the transplant has taken successfully)  I’ve had a partial result back last time, which was 90%, so I expect that to be 100% this time. Although the transplant was/is successful, the effect on the myeloma wasn’t, hence the reason I’m on the Lenalidomide already, before the transplant process has completed. If I hadn’t started on the tablets, I would already be in a worse situation than I am now.

My blood results were OK on Friday as well.

HB 9.7
PL 65
WH 3.6
Neuts 1.3

My Neutrophils are a bit low, but I expect them to climb back up again, I will find out on Wednesday.

I’ve also been in a quite a bit of pain with my back this week, although it has eased off a bit today, but I’m still not sleeping properly. I’m taking the sleeping tablets, but with the back pain and cramps that I have been having in my feet and legs, I’m not getting a chance to have a proper sleep. I doubt very much I will get any over the next few days with the amount of steroids I’m taking now. I will just have to see how it goes and if I can, catch up on some sleep during the day.


  1. Chris & Jodie Sanderson13 May 2012 at 07:48

    Our thoughts are with you and Maria. Let's hope that the transfusion helps. Love you both x

  2. Luv u Sean 😘😘😘😘

  3. Thanks for keeping us up to speed on what's happening...just wish it was better news. Hopefully the DLI will be successful with no complications, and you will feel better soon!

  4. both hugh and i will be sending you powerful vibes of hope, strength, and healing, sean. so glad you have nigel - what a wonderful brother he is! i know this must be a difficult time for you and charito, but we are BELIEVING that the new interventions will be successful and that you will be feeling so much better. xo, karen

  5. Hiya Sean, Mark ( / Multiple Myeloma My Way) here. It's a big news day for me whenever you write and I've re-read your post a few times...

    Once I submitted to diagnostic testing last Fall and a clear diagnosis of relapse, I went to find a new team to handle my treatment. They advised and I accepted an aggressive treatment with Velcade(bortezomib), Revlimid(lenalidomide) and Decadron(dexamethasone) -- All in I completed 5 twenty eight day cycles. That was all I could tolerate. It was supposed to have been six to eight total, but I threw in the towel. It was just too brutal.

    Since completing the heavy therapy and a couple months rest and recuperation, I am continuing with 'maintenance' therapy. So now my treatment is 21 days of 15mg rev/lenalidomide, then 7 off. It's given me edema in my legs. That is on top of the pain/neuropathy I got from velcade/bortezomib/dex regime. The neuropathy has hold of both my feet and I feel a steady pain level of 6 or 7; day in - day out.

    So hearing from you that your myeloma is steadily active and taking the beating you are giving it and holding its own ... that gives me a whole new perspective on what I am likely to be seeing before a whole lot of time goes by.

    From what you have been describing about your treatments and your lab results, you are fighting hard and keeping focused on finding a way to weaken the myeloma's attacks. That is cool. It sounds like you are giving it everything you've got and all the best of what the latest/best-est protocols seem to promise to us. If it could work for anyone, you show all the signs that you are giving everything any of us can -- you're putting your best day-to-day effort into it and keeping yourself looking forward and the way you write, you seem to expect you will be seeing many more days to come. Good On Ya Sean! Keep On Keepin' On...

    Until next time, I send you

    My very best regards,
    - Mark

  6. I seem to remember Lonnie Nessler had a DLI which was amazingly successful. I tell you what you don't need the extra worry about Nigel getting hit by a bus! ;D

  7. Paula is correct, Lonnie did have a DLI... it is a scary procedure, but I am intending you are doing well with it and it forces the Chimerism to take over.

  8. Sean is gone but still in our hearts. Carol xxxxxx