What happens next?

Although I’ve hinted, I’ve not yet written about what happens after this round of treatment on Velcade. Those of you with Myeloma or other blood cancers will know or guess what’s on the cards, but for the rest of you, here it is…

In August last year, I had an autologous stem cell transplant. That means they collected stem cells from me, then gave me an immense dose of very toxic chemotherapy, called Melphalan. I recently heard that it’s the same chemicals as in mustard gas, which was used to kill very effectively during the First World War! After that, they gave me back my stem cells to save me from the effects of the chemo, which otherwise would have killed me. I am not being overdramatic here; they even call this treatment “stem cell rescue”.

As you can see from the photo, the procedure was hard-going – I was really not a happy bunny, but fortunately it put the Myeloma into complete remission. Sadly, we now know the chemo failed, but actually the transplant itself worked… Even though the cancer relapsed, I’m alive and well, with a fairly robust immune system. I’ve only had a couple of very mild colds – no flu, no pneumonia and no hospital stays since August. I can get to feeling quite smug when I hear of friends suffering with the flu.

When I was first diagnosed last year, the initial treatment was on Revlimid, which I then also had as a maintenance medication after the transplant. All of this was part of a trial, where I was randomly selected to receive either Revlimid or Thalidomide at initial treatment stage, then either Revlimid or no medication at post-transplant stage. Revlimid worked very well initially, taking me to complete remission in only four months, but sadly it didn’t work at maintaining the remission for me.

You can see the Myeloma XI trial flowchart, which shows the three points of randomisation for different treatment options. Being on this trial has given me access to the newest drugs being developed and will obviously help those who come behind me.

So, I am now on Velcade (Bortezomib) – a proteasome inhibitor, which has been shown to be very effective at this stage at putting the myeloma back into remission. But, or maybe I need to say BUT… that remission won’t last without doing something else.

The something else is called an allogeneic stem cell transplant. This means they collect stem cells from a donor, which they transplant into me. This procedure, while sounding very similar to the autologous transplant, has a completely different focus.

With the autologous transplant that I’ve had, it’s the chemotherapy that acts on the disease. With an allogeneic or donor transplant, it’s much more like a transplanted organ, i.e. the intention is that the donor stem cells replace my own and I will get a brand new (second-hand?) immune system. The aim is for what they call 100% chimerism, i.e. my whole immune system is taken over by the incoming donated stem cells. This science amazes me constantly.

There are two types of allogeneic stem cell transplants:

  • The standard transplant uses high dose chemotherapy, which ablates the myeloma cells prior to transplant. Understandably, this procedure is a bit more dangerous and will actually only be carried out on young patients (under 50) as it carries a higher risk of mortality (20-25%).
  • The reduced intensity chemotherapy (RIC) or ‘mini-allo’ reduces the toxicity of a standard SCT, which makes the mini-SCT more suitable for older patients. A mini-allo is sometimes performed “in tandem” with an auto transplant, i.e. within six months of the auto SCT to really knock the cancer on the head.

I will be having a non-tandem RIC/mini-allo transplant. Are you still following this? I know I get quite blasé about my newly acquired medical understanding and forget that it’s more confusing if it’s not part of your daily reality. One of my specialist nurses has told me she reads the blog, so if any of the medical/scientific information is wrong, I’m hoping she’ll correct me.

The chemotherapy they will give me prior to the stem cells is a low intensity dose, which will reduce the number of myeloma cells. The mini-SCT is intended to kill some of the myeloma cells and to suppress the immune system just enough to allow the SCT to take place, so that the donor cells can produce a new immune system. In other words, it is given to condition or prepare the body to accept the donor stem cells. So, the effects of the chemotherapy are much less… apparently no sickness, no diarrhoea, no mucositis, no or very little hair loss and only about 7-10 days in hospital. Hurray! The recovery takes quite a bit longer though; more on that later.

So, where do they get these stem cells from? Well, the first person to ask is a sibling. I only have one brother, who agreed to be tested. It’s initially a straightforward blood test, which he could do at his doctor’s but then needed to send the vial over to a hospital lab in the UK to be checked. In fact, as I started writing this, his blood was being tested, but I just heard this week that he is not a match. 😦

A sibling has a 25% chance of being a tissue match. If he had been a suitable match, then he would have been the best possible because of the shared DNA from our parents. Now would be a great time to have an identical twin!

If he had been a suitable match, he would have needed to come over to the UK to receive a week of GCSF subcutaneous injections, like those I had last June. Then, as I did last year, he would have been hooked up to the stem cell collection machine for a few hours over one or two days to siphon off the stem cells from his blood. All this would have been done through cannulas, not a Hickman Line like I had. It’s almost painless.

As my brother is not a match, they would then look at a number of stem cell donation registers (both in the UK and abroad), such as the Anthony Nolan Trust or the British Bone Marrow Registry for a matched unrelated donor [MUD].

_____ _____ _____ _____ _____

Here is a quick but very relevant aside…

If anyone is interested, you can register as a donor if you are between the ages of 18 and 40. They particularly need more young men, aged 18-30. The initial registering only requires a saliva swab, but obviously you would need to be willing to go through the procedure if you are a match for someone.  There are registers in countries all over the world. So if you are up for it, or know anyone who might be, please do it or encourage them to do so – it could be a life saving act that would make you feel good!

There is also the possibility of using stem cells from donated umbilical cords. When a baby is born, it is possible to donate the umbilical cord and placenta for stem cell use. Again, if you’re interested, you can contact the Anthony Nolan Trust or a similar organisation in your own country.

I am endeavouring to promote stem cell donation, as although yours may not be needed for me, there are so many people out there for whom it could save their life. One friend is unable to proceed with a donor transplant as there is currently no match for her. So please consider it and check out the above links, which have very clear information on them.

You may even wish to consider arranging a recruitment session… perhaps if you’re already having an event to raise funds, celebrate an achievement or arranging a company event or conference… Please contact the Anthony Nolan Trust and help grow the register. They will give you lots of support to make it a success.

And finally, if you fancy a glamorous evening of dining, dancing, an auction and fantastic raffle prizes, you could do worse than check out The Glitz and Glamour Ball that a Myeloma friend is organising in Marlow, Buckinghamshire on 10 Nov 2012. If you can’t attend, you might be able to donate a raffle or auction prize, or sponsor the event in their programme.

_____ _____ _____ _____ _____

I was told the chances of finding an unrelated donor match are around 90%. The science of it is quite fascinating. If your origins are from a very small specific area, e.g. a small village where there’s not been much/any immigration or movement and people have married within the local area, like the boy/girl next door, then the chances are much higher than someone who is of a mixed heritage background, e.g. an Anglo-Indian mother and an Irish father. Quite ironic really, as I’ve always been a big believer in the health, social and creative benefits of the “melting pot” idea.

In my case, they seemed quite hopeful though. I’m from Eastern European Ashkenazi Jewish stock, albeit from a wide area of Eastern Europe and on one side I’m not even sure exactly where they came from. Apparently the gene pool isn’t so very large… but who knows?! It may be that I fall into the 10% of no suitable donor match… I’m not trying to scare myself or those who care about me or be negative, just realistic.

As another aside, I had a knock on the door the other day from a Jehovah’s Witness pushing their beliefs. While I am much more tolerant these days – the softening aspect of the steroids – I don’t have time for religious proselytism even at the best of times, but having someone doing this right now angered me hugely. I gave her very short shrift… I didn’t say it but wish I had: Where will I be in a few months’ time if it’s not for people donating their blood and stem cells? Flikker op!!!! 😛

Once they find a possible suitable donor, further checks are carried out on a blood test. They look at ten potential matching factors and all ten need to be a match. One of my Myeloma buddies has two siblings, neither of whom were a match. They found one man in Portugal who might have matched, based on the initial saliva test, but when they checked the blood, he only matched on 7/10 factors, which isn’t a good enough match, so she’s foregoing the delights of another transplant for now. Fortunately, she is currently in very good partial remission and making the most of her life – she’s just returned from seeing the Aurora Borealis in Sweden.

If a suitable adult donor match cannot be found, the third possibility is stem cells from donated umbilical cords. When a baby is born, it is possible to donate the umbilical cord and placenta for stem cell use. One of my myeloma specialist nurses has just given birth, so I’m guessing/hoping that she will do exactly that. The consultant explained that the stem cells in a cord are so immature, they can get away with them not being a 10/10 match, so they would opt for a partial match on cord stem cells where they would not use similarly partially matched cells from an adult donor. Isn’t this all so amazing?!

Since I first began writing this update, I saw my consultant last Monday and she confirmed some very good news, which is that they have found an unrelated donor for me. I heard about this before I heard that my brother’s tissue type didn’t match mine. Apparently, someone was being tested for another patient and found not to be a match for them, but they are a match for me. This means that I have a second option available and the transplant will definitely go ahead. Yikes!!!!

I will probably have the transplant around mid-May, consisting of about 7-10 days in hospital. I’ve been told I will not only be receiving chemotherapy, albeit with minor effects, but also total body irradiation [TBI], which I’ve only just found out about a couple of days ago, so I don’t know much about it yet, or how it might affect me.

As mentioned above, the purpose of the procedure is to replace my stem cells/immune system with those of the donor, just as with an organ transplant. And just as with the transplant of any organ, there will be an element of what they call Graft versus Host Disease [GvHD]. This is what occurs between the host body (me) and the graft (the incoming stem cells) when the host recognises that there is something foreign in the body.

The Myeloma UK website describes it like this: “Graft versus Host Disease is a complication of allogeneic transplants whereby the donor cells (the graft) recognise the recipient’s body (the host) as foreign and mount an attack. This can cause skin, liver and gut problems and is usually treated with steroids.” (Hurray! More steroids!)

There needs to be an element of GvHD, as this also allows for the Graft versus Myeloma effect to kick in. That’s when the incoming cells attack the recipient’s myeloma cells – this is a good thing – this is what we want!

GvHD can be very mild, resulting in a slight skin rash, or mouth ulcers for example, or quite severe, involving serious problems with internal organs and even death.

That’s the thing… Neither I nor the doctors have any idea how I will respond, how any of us might respond, to what degree I’ll get GvHD and how it might respond to medication to manage it. I can expect recovery to take between six and twelve months.

The first few months, before the stem cells take over, I may be quite well or not, but definitely immuno-suppressed, so I will probably need to have the whole gamut of vaccinations again, and no hanging out in crowded public spaces, like supermarkets, cinemas, airports, trains, or flash mobs. Check this out: Flash mob dance in Liverpool Lime St station.

While I’m not too upset about not going to a supermarket – a friend will be looking after me for such things, this latter non-possibility is quite sad as I have wanted to participate in a flash mob for some time and my friend Simon is organising a flash mob dance in Derby in June to celebrate Volunteers Week 2012. It’s going to be to two great tunes, but I can’t share what they are – they are a secret for now. 😉 But, if you’re in Derby on 1 June, you might just want to check it out. Maybe I’ll be able to cheer them on from the sidelines, with a mask on. Remember this from last year?

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10 Responses to What happens next?

  1. My head is spinning from all that technical info! It’s good that you’ve got your head around it though as ‘knowledge is power’ or so they say. When does all this begin to happen?
    I’m going to ask my son’s to become donors and I really hope they will but of course it’s their call.
    Love your positivity Jet and that in itself can have a good affect on how your body functions, at least that’s what it says in some of the books I’ve been reading lately! Hope you don’t have too difficult a time when it happens. XX


  2. Claire Nance says:

    Thanks again for sharing Jet, and explaining some of what has and will be going on for you.
    Im so glad you’ve been able to find a donor, and am hoping not only that it all goes well for you, but also wishing you the minimum of side effects. xxx


  3. Catriona Yule. says:

    Thank you for such a well thought out blog! It must be a whirl of emotions but you sound like you recover from the downs fairly quickly…though the down times are important to have too; Some get afraid to experience/feel what they see as negative emotions in the belief it adversely effects their recovery, which is rubbish (I think anyway). Its what you are feeling, part of the process and you learn much form them. I am not sure how I would cope with having such a serious illness but I would hope it would be with the same humour and intelligence that you have met your cancer. Onwards and upwards petal!


  4. just about keeping up with your uploads! Love to you and hope all goes well with thw treatment xxx


  5. Rachel Phillips says:

    Good luck with all the forthcoming treatment. I’ve got an appointment at the Blood Donor Centre this afternoon to register for the bone marrow donation register hopefully. Thanks for letting us know on facebook that you can be over 40 and still register as I thought I’d missed the chance because of Anthony Nolan Trust being 40 or under.


  6. Paul Creek says:

    Hi Jet
    Again top write up!,i am going for SCT late may/June time and consultant has already said that i should go for allo graph.So all the info has been taken on board..
    take care Paul


  7. Thank you for the informative update. I can’t tell you happy I am that they found a donor! That is great news. My daughter is in a donor registry and she really hopes she can be a match someday.

    Your strength and spirit are such an inspiration to us all.
    Carole Leigh


  8. If you have not followed the blog of Lonnie Nesseler who went through this very same process last year, please read it or you can find him on FB and he has been very willing to share info and provide support. I am intending your procedure is going successfully and you are coming out the other side with new cells and the GVHD is just enough to keep things under control and this is for the highest and best good of all concerned, so be it and so it is! Whooooooooo!


  9. feresaknit says:

    Great news on the donor match.

    And I thought that the reason the two Jehovahs Witnesses that called at ours once did a runner was because they didn’t want to harass the sick – as I was hairless at the time following my SCT – now I realise it was more likely they didn’t want to risk the possibility of a chat regarding blood transfusions! ;D


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