Allogeneic SCT – more detail

On Monday I had my last visit to the Myeloma clinic. On Mon 23 April, I’m moving up to the very exclusive BMT (Bone Marrow Transplant) New Patients clinic. This is where I’ll find out more details about the forthcoming allogeneic stem cell transplant. In the meantime, I’ve had some information from my specialist nurse and the BMT Co-ordinator Nurse.

Firstly, I want to thank the 19 year old UK young woman who is donating her stem cells. For some reason, I’m really glad it’s a woman who’s donating and I feel so touched to know there’s a young woman out there, possibly following a University course and willing to do something like this – it’s not what one normally thinks of as the student life, is it? I plan to send her a thank you note via the Anthony Nolan Trust. Direct contact isn’t permitted and the card has to be anonymous.

For the autologous stem cell collection, they freeze the cells after collection, so the transplant date isn’t so crucial, as long as someone remembers to take them out of the freezer in time. With a donor’s cells though, they are collected and transplanted fresh, which means the whole thing has to be very precisely co-ordinated and the procedure has to fit in with the donor’s life.

I am currently waiting to hear if the transplant can take place on 16 May, so I can go to Amsterdam the week before. The Co-ordinator said that if that week wasn’t possible, they would ask to postpone it by one week, but she will call me as soon as she hears from the Trust. They do their best to enable patients to carry on with their lives as much as possible, so appointments and procedures are generally arranged at times to suit, for which I am most grateful.

So, this is how it is going to be…

Prior to the transplant procedure, I will need to meet with Dr Saunders, who is the radiotherapy man – that will probably be on Thu 26 April. I will also be having another Hickman line inserted a day or two before going into hospital, depending on when there’s a slot available in the radiology department. This one will have slightly narrower but longer lumens, but will be inserted more or less in the same place as the one I had last year.

Friday: In hospital for Total Body Irradiation [TBI] planning. This means that I will go to Radiology and they will plan how and where they want to direct the irradiation and maybe even draw pretty dots on me to mark the spot.

Saturday, Sunday, Monday: Receiving low dose chemotherapy called Fludarabine. If Daycase was open at the weekend, I could receive it there. Daycase is where I go for my twice-weekly Velcade and 8-weekly Zometa infusions. Apparently, it takes less than an hour to give.

Providing I don’t have a bad reaction, I can go home on a ‘pass’ on the above nights, so although I will be admitted as an in-patient, with any luck I won’t have to stay overnight in hospital up to this point.

Tuesday: Receive the TBI. Stay overnight to monitor for symptoms/reactions.

Wednesday: Receive the stem cells. Stay overnight and Thursday night.

Friday: all being well, with no bad reactions, I can go home. I don’t know if I will be neutropenic or not at this point. Some people go neutropenic immediately, some after a few days, or weeks, or not at all. (Neutropenic means the neutrophils go to zero, so you have absolutely no immunity to infections etc.)

After the transplant, I will have to go to Daycase once a week for my line to be cleaned and dressed. The line will stay in for a few weeks in case I need platelets, red blood cells or a blood transfusion. I will also go to clinic twice a week to monitor the immunosuppression drug, ciclosporin that I will have to take to stop my body from rejecting the transplanted stem cells.

As for what happens afterwards, in terms of recovery and the effect on the cancer… Well, the table below shows the nine patients who have been through this procedure at Nottingham Haematology Unit. Yes, this type of treatment really is that new, so there is no common history yet of statistics and results, only local centre evidence. Again I am in awe of the science and innovation that will hopefully lengthen my life.

Patient No.
Sex
Age at HSCT
Diagnosis
No. of lines of chemo before RIC allo
Number of previous Auto SCTs
Tandem/
non-tandem
Time diagnosis to Allo SCT (months)
Donor
Disease status at start of RIC Allo
Best disease status post-RIC Allo
GvHD
Outcome
11
M
47
IgG Lambda MM
3
1
Non-tandem
12
HLA-id sib
PR
PR
Limited GvHD
Alive +47 months
In CR
100% donor chimerism
Mild cGvHD
12
M
44
IgG Lambda MM
2
1
Tandem
10
HLA-id sib
CR
CR
Limited GvHD
Alive +39 months
In CR
100% donor chimerism
GvHD resolved
13
F
40
IgA Kappa MM
2
1
Tandem
8
HLA-id sib
CR
CR
Extensive GvHD
Death +13 months
from severe, extensive cGVHD
14
M
44
IgG Kappa MM
2
1
Tandem
7
10/10 matched MUD-PBSC
PR
PR
Limited GvHD
Alive +30 months
In vgPR (pp too low to quantitate)
100% donor chimerism
Ongoing mild cGvHD skin, on immunosuppression
15
F
50
Plasma cell leukaemia
3
1
Tandem
8
Cord 4/6 match
CR
CR
Nil
Alive +29 months
In CR
Full autologous reconstitution
(0% donor chimerism)
16
M
50
IgG Lambda MM
2
1
Tandem
10
HLA-id sib
CR
CR
Limited GvHD
Alive +26 months
In CR
100% donor chimerism
Oral cGvHD, on immuno-suppression for cGvHD kidneys (nephritic range proteinurea)
17
F
63
IgG Kappa MM + plasma cell leukaemia
2
0 *
Non-tandem
7
10/10 matched MUD-PBSC
CR
CR
Limited GvHD
Alive +10 months
In CR
100% donor chimerism
Oral cGvHD, on tapering immuno-suppression
18
M
59
IgG Kappa `+ Lambda + IgA Lambda
3
1
Tandem
18
10/10 matched MUD-PBSC
vgPR
Progressive disease
Nil
Death D+140 from progressive disease
19
M
55
LC Lambda MM + mesenteric plamacytoma
3
1
Tandem
10
HLA-id sib
PR
CR
Nil
Alive D+202
In CR
100% donor chimerism

Notes

HLA-id sib = sibling donor; Cord 4/6 match = umbilical cord donor; 10/10 matched MUD=PBSC = Unrelated donor – this is what I am having.

My diagnosis is Kappa, but I’m not sure if it’s IgA or IgG.

Disease status: CR = complete remission; vgPR = Very good partial remission; PR = partial remission

GVHD = Graft versus Host Disease; cGVHD = chronic Graft versus Host Disease

Donor chimerism = donor immune system takes over patient’s immune system. Ideal is 100%.

I noted that the patient numbers start at 11. I want to ask the registrar who put this chart together, what happened to patients 1-10? She’s away at a BMT conference this week, so I will ask her next week. And I’d like to find out exactly what type of myeloma diagnosis I have.

Please feel free to ask questions in the comments. If I know the answer, I will respond.

It’s strange going through all this, as I tend to take it all mostly for granted, acclimatising along the way to everything that I have to face, almost blasé about everything. But then a good result, like last week’s post about being in complete remission, or the fear and awe of this forthcoming transplant suddenly hit me, and I realise what a rare and potentially scary situation I am in and that I could die and that these are not just words, but a possible reality. And then I flip back into a sort of living-in-the-moment-semi-denial mode. I wonder if my fellow cancer buddies also experience this strange head space?

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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14 Responses to Allogeneic SCT – more detail

  1. snip1234 says:

    Your last paragraph struck a chord: as a recent ASCT recipient (VGR… that was a bit disappointing), I also swing from a cavalier attitude to the whole medical rigamarole to moments of lucid panic, where I realize that the stuff I am facing really IS life-and-death, and will certainly negatively alter my life going forward.

    Of course, we’re human, and as such are, I think, wired to mask the worst that confronts us and accentuate the best… reality is a meal best served in small doses, perhaps.

    Wishing only the best for you going forward, Jet!

    Like

  2. Kevin says:

    Firstly, best wishes for your upcoming treatment. I often reflect on my ‘head space’ thoughts. On diagnosis just over 5 years ago I dont remember any great emotion. just carried on as normal as if it was a hicup in life. It has been like that since then, planning for the future and treating the MM with the contempt it deserves. However every now and then I think it is serious, it could kill me, live for today, dont worry about tomorrow. I mainly live my life in the former state of mind and not the latter. I had a consultation in Nov 11 and was told that it was showing signs of return. Even at this news my mind set only changed slightly, possibly because I new what will lie ahead treatment wise.
    I see my consultant tonight and will find out if it was just a ‘blip’ or !!!!!!!!. Strange, I dont feel any emotions one way or the other. Think its a case of just wanting to know and get on.
    Once again, best wishes
    Kevin

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  3. Hard to judge with such a small sample but the pecentage of success looks good. Scary times for you darling. I’ve got a good feeling about this and you know that you’vejustto keep on trucking. XX

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  4. Hi Jet
    firstly loving the new photo, what are you looking at? You have changed quite alot in your physical appearance since the old photo, do you think you have changed much in terms of your personality and character since your diagnosis? Interesting question, maybe one for your other blog. If your allogenic transplant is a success, not only may your blood type change but your whole DNA will change (apparently having an allogenic transplant is the only way your DNA can be changed – quite a lot for a criminal to go through to avoid being caught by his DNA!!). I know quite alot about the procedure having researched it myself when it was being considered for me and also about the scary statistics! It is a newish treatment but there are published studies out there especially from the US about their success or otherwise either when compared against an auto transplant on its own or a tandem auto transplant or a full allogenic transplant. I can let you have the links to these studies if you really want them but I know its not as if you are deciding to have the transplant or not, you ARE having it.

    I do fom time to time get the strange head space you refer to, although right now I am not about to undertake a scary procedure and an uncertain future in terms of GVHD. I experience a semi or even complete denial that I have myeloma when I feel quite well and then think I am going to die everytime I am not so well. I dont know how I would deal with what you are going to be going through and how I would feel about it but I do think that living in the moment as you are trying to do is the best way but you are going to have those moments when you are just going to be overwhelmed and hit by it all.

    Take it easy

    Love Wendy

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    • Thanks for the comment on my photo. Yes, I thought it was time to let go of the old photo as I really don’t feel like the same person at all, visually, but also like you’ve suggested, I feel very different inside. I shall give it some thought and maybe when I have time (while recuperating from the transplant, perhaps?) I might write about that. Thanks for the idea.

      And cool info about the change in DNA. Yes, perhaps you could email the links to statistics… I guess I should probably make myself aware. Not that it will change anything. Like you say, I WILL be going through with the transplant, so no decision to make or change.

      Back to the photo, I wasn’t really looking at anything, I was posing for three fellow amateur photographers who were demanding to take my photo on my recent Belgium trip. We had quite a laugh… Belgium’s Next Top Model? NOT! LOL!

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  5. I have a relative for whom I was a caregiver when he went through two auto SCTs (which really did not work) and then about a year later he had a mini-allo from his sister which seems to have taken quite nicely. There were some scary spots along the way, and as I live at a great distance I was not apprised of most of them, but today he is doing pretty well. I also know of a fellow in the MM community, Lonnie Nesseler, who had an Allo from a stranger. You can google his name for his blog and he is pretty agreeable to sharing information. He has been through it all, is my guess, and is very pragmatic and forthright. He is also on the MM Facebook group: https://www.facebook.com/groups/108654495840465/ as are a number of other peeps from around the world… you would be welcome there. Anyhow, intending your SCT is going very all and you are recovering quickly and enjoying much better health from here on…

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  6. I forgot to add that I really, really like your new photo header….!!

    Like

  7. thanks Jet, will comment when I can assemble the words

    Like

  8. Mavis says:

    Dear Jet
    You are so generous to share all this. It is very valuable material for the MM community. I am sure we all have questions on your behalf and look forward to hearing about your consultation when it happens. If anyone can make this work – you will! And trust you will get to Ampsterdam first.
    Presumably the 47 months patient rolls on and on… Something about being at the forefront of treatment development – not a lot to go on, and knowing you will be part of this chart soon; first days, then months; and then years!
    All love.
    Mavis xxx

    Like

  9. Sean Tiernan says:

    HI,
    I think we all go through strange thoughts especially when we get the information from the Dr’s and start reflecting on it and the side effects, but reading about everyone else’s experience is always encouraging and knowing that they have come through the other side OK. I’ve found though that everyone is different and you can’t really compare yourself to anyone else, particularly with Myeloma. The best thing to do is to do exactly what you are doing and staying positive and moving on to the next stage. Always keep smiling and have a positive attitude.

    Like

    • Thanks Sean. I guess I smile when I smile and I cry when I cry. And I’m positive when I feel positive and not when I’m not. I tend to go with my emotions moment by moment. Just being authentic and in touch with however I’m feeling is what works for me. But you’re absolutely right about how we all respond/react differently. Makes for an interesting journey, eh? 🙂

      Like

  10. feresaknit says:

    WOW – 16 May! It’s so exciting AND scary. Plus you get to go home so soon after. At the Royal Liverpool they keep people in for a few weeks after – not too sure which I’d prefer. 😀

    Like

    • I was in for two weeks with the auto SCT and really needed to be there. But because the chemo is much milder for the allo, they let you out if possible. Liverpool may do that too. Autos and allos are really quite different.

      I read an article recently, which I shall re-post here, that showed lower infection rates if patients went through SCT as an outpatient. It’s from the USA, where they have to pay for everything or through insurance, so they may be a bit more inclined to get people out of hospital for cost reasons. Thank goodness for and let’s please hold on to our precious NHS!

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