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?