Are you stitting comfortably? (PG)
Then I'll begin..........
Rated Possibly Gruesome for descriptions of drug side effects and medical procedures.
A very long post today as I saw my consultant yesterday and we went over the process of the transplant and its effects in some detail and I thought I'd share it with you.
First the basic sequence of events:
I'll have lung, heart and kidney tests on the 21st August. This is partly to make sure I am up to having the transplant and partly to provide a base line to compare against later to assess the affects of the various drugs I'll be having. The consultant said that given I'd already have some sort of symptoms if there was anything wrong it's unlikely that anything will turn up to mean I can't proceed with the transplant.
On the 28th August my donor will have some medical tests to make sure he is ok to give stem cells. I'm not totally sure what these tests are but I suspect some will be blood tests to check for infections like hepatitis, HIV , syphilis etc. Assuming that is all fine then "donor clearance" will be given on the 29th August.
On the 8th of September I'll be admitted on to the Bone Marrow Transplant (BMT) Unit to start the conditioning regime for the stem cell transplant. It's called the BMT though actual bone marrow transplants are not done as often these days. Stem cell infusions of the sort I'll be having are becoming more and more common.
The conditioning regime is a week long course of intensive chemo usually involving three drugs, Fludarabine, Campath and Melphalan. The purpose of this regime is, to quote the consultant, "to punch a whole in your immune system to make room for the donor stem cells."
My blood counts will be pretty much dropped to zero and my bone marrow stem cells will be "squashed". The process is known as myeloablation. Technically this type of reduced intensity conditioning is not called myeloablative as my bone marrow is not completely destroyed unlike it would be with total body irradiation. However the consultant said that in the initial stages, for all intents and purposes my bone marrow will be out for the count.
On September the 15th my donor will donate his stem cells and they will be couriered up to the hospital from London which is region he is based. Yes that's right I'm going to have a cockeney immune system going forward. Cor blimey guv'nor!
The stem cells will be given to me through my Hickman line just like a blood transfusion over the space of about 30 minutes and that's it I've had a stem cell transplant.
Then it is something of a waiting game as the donor stem cells graft into my bone marrow over the next couple of weeks.
That in essence is the process and over time the donor cells should become the dominant immune system in my body. My own immune system will still be there to some extent giving rise to something called mixed "chimerism" ( named after the lion/goatdragon creature, the chimera of greek mythology ). Effectively if you took my stem cells at random you'll have a certain percentage with the donor's DNA and a certain percentage with my DNA. This could be 75/25 or 90/10
The whole purpose of having the stem cell transplant is to have an immune system that hopefully won't produce mantle cells that turn cancerous but also will seek out and attack any mantle cells I still have that are cancerous or pre-cancerous.
This second effect, known as graft versus lymphoma comes about as a result of the donor's immune system recognising the cancerous mantle cells as foreign and killing them.
Closely related this effect is something less helpful called graft versus host disease. This is where the donor's immune system recognises my other normal tissues as foreign and starts attacking them.
If you think about something like a kidney transplant the risk is your immune system thinks the new kidney is a foreign body and rejects it. To counteract this you have immunosuppressant drugs to stop this until your body settles down. Well with a stem cell transplant it's like that in reverse, you've had an immune system implanted in you and it starts to reject you.
This graft versus host disease is handled using an immunosuppressant drug called cyclosporin. I'll be on this drug for anything up to a year after the transplant on steadily decreasing doses until the new immune system learns what is foreign and what is not.
Another analogy is like a fire blanket. You throw it over the fire and then every so often you lift it up to see if the fire is out. If it isn't you put it back down and check later. The donor's immune system is the fire and the cyclosporin is the fire blanket. You reduce the dose and see what happens with graft versus host.
As you can imagine graft versus host is a bit of a double edged sword, you want a bit of that response to attack the cancer cells but not too much that it attacks healthy cells.
Ok, bored yet? Information overload yet? No? On to the risks and side effects then:
First there are the side effects and risks from the conditioning regime chemo.
These include the "usual" chemo side effects of hair loss ( just when it is coming back ), nausea and fatigue which are things I've already had and something I could have had with my chemo so far but haven't - Mucositis which is the inflammation of the lining of the digestive tract and mouth.
This can affect any part of the tract from top to, quite literally, bottom. Mouth ulcers are the most common effect and these can be painful enough to make it difficult to eat and even require morphine to control the pain. Inflammation of the gullet and/or diarrhoea are also common.
Unfortunately due to the nature of this round of chemo I'm almost guaranteed to get affected by mucositis to some degree.
My blood counts will all be down to zero whilst I am in hospital so there are the usual risks of infections from bacteria , fungus and virus. Hence the need for a single room with full air filtering and "reverse barrier nursing" for a period.
Blood transfusions of red cells and platelets are also likely to be required until my counts recover.
Now we come to the effects of using cyclosporin to suppress my immune system. Of course this increases the risk of infections though more so from viruses than bacteria and fungus this time.
Around 40% of patients develop shingles however if you can spot the symptoms, tingling along a nerve path and a localised rash, it can be treated before it develops, if not you just have to manage the symptoms.
Cyclosporin has a whole long list of possible side-effects including extra-hair growth and gum thickening. ( Is that thickening out or down I wonder? Will I end up looking like Mick Jagger or have a mouth like a tortoise?). The consultant said that over the months of the treatment most symptoms I develop will be from the cyclosporin. He described it as a "dirty but effective drug".
On the flip side of the cyclosporin question is graft versus host disease mentioned above (GVHD). This can range from acute which comes on quite rapidly and chronic which develops after about 100 days. For full and gory details you can read here
Having read all that it's easy to forget the reason for having the transplant in the first place. As the saying goes, when you are up to your arse in alligators it's hard to remember the original objective was to cross the swamp.
A stem cell transplant is my best chance for a permanent cure. Actually it's my only chance of a cure. Although I have had a complete response to my chemo, without the stem cell transplant the lymphoma will come back ( "maybe not today, maybe not tomorrow but soon and for the rest of my life" [ with apologies to Casablanca ]) and it will be harder to treat next time round.
I'm under no allusions the transplant is a major procedure with serious risks but it's the only game in town and I've prepared myself for it as well as I can. Knowledge is power, or so they say.
Rated Possibly Gruesome for descriptions of drug side effects and medical procedures.
A very long post today as I saw my consultant yesterday and we went over the process of the transplant and its effects in some detail and I thought I'd share it with you.
First the basic sequence of events:
I'll have lung, heart and kidney tests on the 21st August. This is partly to make sure I am up to having the transplant and partly to provide a base line to compare against later to assess the affects of the various drugs I'll be having. The consultant said that given I'd already have some sort of symptoms if there was anything wrong it's unlikely that anything will turn up to mean I can't proceed with the transplant.
On the 28th August my donor will have some medical tests to make sure he is ok to give stem cells. I'm not totally sure what these tests are but I suspect some will be blood tests to check for infections like hepatitis, HIV , syphilis etc. Assuming that is all fine then "donor clearance" will be given on the 29th August.
On the 8th of September I'll be admitted on to the Bone Marrow Transplant (BMT) Unit to start the conditioning regime for the stem cell transplant. It's called the BMT though actual bone marrow transplants are not done as often these days. Stem cell infusions of the sort I'll be having are becoming more and more common.
The conditioning regime is a week long course of intensive chemo usually involving three drugs, Fludarabine, Campath and Melphalan. The purpose of this regime is, to quote the consultant, "to punch a whole in your immune system to make room for the donor stem cells."
My blood counts will be pretty much dropped to zero and my bone marrow stem cells will be "squashed". The process is known as myeloablation. Technically this type of reduced intensity conditioning is not called myeloablative as my bone marrow is not completely destroyed unlike it would be with total body irradiation. However the consultant said that in the initial stages, for all intents and purposes my bone marrow will be out for the count.
On September the 15th my donor will donate his stem cells and they will be couriered up to the hospital from London which is region he is based. Yes that's right I'm going to have a cockeney immune system going forward. Cor blimey guv'nor!
The stem cells will be given to me through my Hickman line just like a blood transfusion over the space of about 30 minutes and that's it I've had a stem cell transplant.
Then it is something of a waiting game as the donor stem cells graft into my bone marrow over the next couple of weeks.
That in essence is the process and over time the donor cells should become the dominant immune system in my body. My own immune system will still be there to some extent giving rise to something called mixed "chimerism" ( named after the lion/goatdragon creature, the chimera of greek mythology ). Effectively if you took my stem cells at random you'll have a certain percentage with the donor's DNA and a certain percentage with my DNA. This could be 75/25 or 90/10
The whole purpose of having the stem cell transplant is to have an immune system that hopefully won't produce mantle cells that turn cancerous but also will seek out and attack any mantle cells I still have that are cancerous or pre-cancerous.
This second effect, known as graft versus lymphoma comes about as a result of the donor's immune system recognising the cancerous mantle cells as foreign and killing them.
Closely related this effect is something less helpful called graft versus host disease. This is where the donor's immune system recognises my other normal tissues as foreign and starts attacking them.
If you think about something like a kidney transplant the risk is your immune system thinks the new kidney is a foreign body and rejects it. To counteract this you have immunosuppressant drugs to stop this until your body settles down. Well with a stem cell transplant it's like that in reverse, you've had an immune system implanted in you and it starts to reject you.
This graft versus host disease is handled using an immunosuppressant drug called cyclosporin. I'll be on this drug for anything up to a year after the transplant on steadily decreasing doses until the new immune system learns what is foreign and what is not.
Another analogy is like a fire blanket. You throw it over the fire and then every so often you lift it up to see if the fire is out. If it isn't you put it back down and check later. The donor's immune system is the fire and the cyclosporin is the fire blanket. You reduce the dose and see what happens with graft versus host.
As you can imagine graft versus host is a bit of a double edged sword, you want a bit of that response to attack the cancer cells but not too much that it attacks healthy cells.
Ok, bored yet? Information overload yet? No? On to the risks and side effects then:
First there are the side effects and risks from the conditioning regime chemo.
These include the "usual" chemo side effects of hair loss ( just when it is coming back ), nausea and fatigue which are things I've already had and something I could have had with my chemo so far but haven't - Mucositis which is the inflammation of the lining of the digestive tract and mouth.
This can affect any part of the tract from top to, quite literally, bottom. Mouth ulcers are the most common effect and these can be painful enough to make it difficult to eat and even require morphine to control the pain. Inflammation of the gullet and/or diarrhoea are also common.
Unfortunately due to the nature of this round of chemo I'm almost guaranteed to get affected by mucositis to some degree.
My blood counts will all be down to zero whilst I am in hospital so there are the usual risks of infections from bacteria , fungus and virus. Hence the need for a single room with full air filtering and "reverse barrier nursing" for a period.
Blood transfusions of red cells and platelets are also likely to be required until my counts recover.
Now we come to the effects of using cyclosporin to suppress my immune system. Of course this increases the risk of infections though more so from viruses than bacteria and fungus this time.
Around 40% of patients develop shingles however if you can spot the symptoms, tingling along a nerve path and a localised rash, it can be treated before it develops, if not you just have to manage the symptoms.
Cyclosporin has a whole long list of possible side-effects including extra-hair growth and gum thickening. ( Is that thickening out or down I wonder? Will I end up looking like Mick Jagger or have a mouth like a tortoise?). The consultant said that over the months of the treatment most symptoms I develop will be from the cyclosporin. He described it as a "dirty but effective drug".
On the flip side of the cyclosporin question is graft versus host disease mentioned above (GVHD). This can range from acute which comes on quite rapidly and chronic which develops after about 100 days. For full and gory details you can read here
Having read all that it's easy to forget the reason for having the transplant in the first place. As the saying goes, when you are up to your arse in alligators it's hard to remember the original objective was to cross the swamp.
A stem cell transplant is my best chance for a permanent cure. Actually it's my only chance of a cure. Although I have had a complete response to my chemo, without the stem cell transplant the lymphoma will come back ( "maybe not today, maybe not tomorrow but soon and for the rest of my life" [ with apologies to Casablanca ]) and it will be harder to treat next time round.
I'm under no allusions the transplant is a major procedure with serious risks but it's the only game in town and I've prepared myself for it as well as I can. Knowledge is power, or so they say.
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