HSCT Treatment - How
This section is about how the HSCT is administered, what the general procedures/processes is. This is not taken from personal experience, as I am lucky enough to have recovered to a point that the treatment is not necessary and I have some sense of normality back in my life, so I have pulled these details from other peoples experiences of the process:
Testing for if you are a suitable candidate to have HSCT
If you go to Pirogov, there appears to be minimal actual testing before you go, apart from general conversations/discussions (this may very well apply to the centres a long distance away).
A fee is paid for you to have the initial testing (this seems to be around £3,500), but this doesn't include any flights/transfers, which can easily double the costs, plus if you are actually going with someone else their costs of staying.
The tests themselves seem to last for around four days and the main purposes are to understand what your medical age is, if there are any other issues/illnesses that may prevent you from being treated and likelihood to be able survive the process, this relates to the chemotherapy as you have to be "fit and healthy" in order to cope.
Below is the testing sheet from a specific patient:
If you go to Pirogov, there appears to be minimal actual testing before you go, apart from general conversations/discussions (this may very well apply to the centres a long distance away).
A fee is paid for you to have the initial testing (this seems to be around £3,500), but this doesn't include any flights/transfers, which can easily double the costs, plus if you are actually going with someone else their costs of staying.
The tests themselves seem to last for around four days and the main purposes are to understand what your medical age is, if there are any other issues/illnesses that may prevent you from being treated and likelihood to be able survive the process, this relates to the chemotherapy as you have to be "fit and healthy" in order to cope.
Below is the testing sheet from a specific patient:
The above seems pretty standard for CIDP.
The Dr then goes through the results and assesses whether the treatment is suitable for you and as stated above this depends on your biological age. The next step if you pass is the treatment itself.
The Dr then goes through the results and assesses whether the treatment is suitable for you and as stated above this depends on your biological age. The next step if you pass is the treatment itself.
Once you are accepted (and have paid!) you will start the treatment. Please be aware setting up payment for this type of treatment is NOT straightforward, mostly due to the country (Russia) and the monetary conditions, but also due to the large amounts required and the security checks put in place by banks (it can be rejected even if they have been informed, so have a plan B).
Notes:
Notes:
- The process itself is not without risk - apparently there is a 1% change of death, but if you have CIDP and it isn't getting cured, then it will only get worse and it could kill you anyway!
- Also they put tubes directly into your juguler vein - which looks a lot worse than it is (apparently). These they do insert and remove at various phases
Apheresis
The treatment commences with use of a steroid/anti-inflammatory drug via IV (e.g. Solumedrol) - it helps ease the pain from boosting the bone marrow to produce the millions of brand new cells that are needed for the process. The other medicine injected was to reduce the risk of infection (e.g. Neuprogen).
The drugs can introduce difficulties in sleeping and bone pain (which may not be there initially but can come in over time), plus other side effects like your hand shaking. If you want the full set of sire-effects please look it up on google. Exactly how much pain is felt, seems to be dependent on the patient and their pain threshold - my view would be this should be acceptable, seeing as compared to CIDP and the hope this brings, it must be worth it?
The next stage is getting those new stem cells out of your body! This is called apheresis. It is around 5 hours in a day attached to a machine. Below is a picture of the type of machine used:
The drugs can introduce difficulties in sleeping and bone pain (which may not be there initially but can come in over time), plus other side effects like your hand shaking. If you want the full set of sire-effects please look it up on google. Exactly how much pain is felt, seems to be dependent on the patient and their pain threshold - my view would be this should be acceptable, seeing as compared to CIDP and the hope this brings, it must be worth it?
The next stage is getting those new stem cells out of your body! This is called apheresis. It is around 5 hours in a day attached to a machine. Below is a picture of the type of machine used:
It is basically the same type of machine that is used for kidney dialysis. It draws all your blood out (twice in 5 hours), filters out the new stem cells and puts the blood back. Apart from having to lie there for 5 hours solid (and the bodily functions that need to be considered) there seem to be minimal side effects.
This is usually expected to last for 2 days, but it can take longer to collect the cells/ It is expected they need over 2 million of the new cells (this is a rough estimate!). Once the process is complete and they have enough cells the patients are given a day or two of rest.
Apparently in some surgeries (e.g. Dr Burt in Chicago) the chemo can be done before the apheresis, this can assist in the production of new cells, but you can get way more bone pain.
This is usually expected to last for 2 days, but it can take longer to collect the cells/ It is expected they need over 2 million of the new cells (this is a rough estimate!). Once the process is complete and they have enough cells the patients are given a day or two of rest.
Apparently in some surgeries (e.g. Dr Burt in Chicago) the chemo can be done before the apheresis, this can assist in the production of new cells, but you can get way more bone pain.
Chemotherapy
During the whole process you need what is called an octopus (or mini octopus) - which is a series of tubes and pipes directly connected to your juggler vein.
This allows the drugs to be administered easily.
The chemo is a series of bottles around 3/4 to 1 pint in size, to be administered during the day/evening. It seems there are around 7 to 9 and a couple are for protecting the kidneys, plus a mix of pills for antibiotic, antiviral and gastrointestinal needs.
The chemo is administered over three or four days, but other fluids are administered in similar manner to manage the side effects over the next couple of days.
Other pills include:
Cyclophosphamide 200 mg/kg b.w. (SD) for for 4 days with a single dose of rituximab at the end of treatment (Rituximab 375-500 mg/m*2).
These are provided after the main chemo. There are lots of potential issues with the process, as it is very invasive to the body. That is why there are a considerable number of anti-chemo drugs supplied to assist. The process can rate as medium on a pain threshold scales and the body will "ache" plus commonly difficulty in sleeping.
The side effects of the chemo include:
On a side issue about how many cells need to be harvested before the process can begin. The absolute minimum appears to be around 1.5 million, with 2 - 8 million being an accepted amount. However certain organisations want to have lots more than this, which obviously takes a lot more time and pain, due to the extra stimulation. Numbers as high as 60 million have been reported, but there seems to be no need for it to be this high and have no benefits to the patient (e.g. faster recovery) that has been proven, up to the time of me writing this,
The chemo is a series of bottles around 3/4 to 1 pint in size, to be administered during the day/evening. It seems there are around 7 to 9 and a couple are for protecting the kidneys, plus a mix of pills for antibiotic, antiviral and gastrointestinal needs.
The chemo is administered over three or four days, but other fluids are administered in similar manner to manage the side effects over the next couple of days.
Other pills include:
Cyclophosphamide 200 mg/kg b.w. (SD) for for 4 days with a single dose of rituximab at the end of treatment (Rituximab 375-500 mg/m*2).
These are provided after the main chemo. There are lots of potential issues with the process, as it is very invasive to the body. That is why there are a considerable number of anti-chemo drugs supplied to assist. The process can rate as medium on a pain threshold scales and the body will "ache" plus commonly difficulty in sleeping.
The side effects of the chemo include:
- Loss of hair - which will eventually grow back, but almost as fluff initially and it takes 3-6 months, or so!
- Chemo brain - this effects a significant number of patients from all chemotherapy, but at quite different levels. The basic condition is loss of cognitive function (mental abilities) and has been proved to exist. This is considered temporary. however can last for a considerable time after the treatment.
- Damage to Organs - Heart, Liver & Kidney seem to be the main ones that could have issues, though the drugs and monitoring seem to reduce the issues
On a side issue about how many cells need to be harvested before the process can begin. The absolute minimum appears to be around 1.5 million, with 2 - 8 million being an accepted amount. However certain organisations want to have lots more than this, which obviously takes a lot more time and pain, due to the extra stimulation. Numbers as high as 60 million have been reported, but there seems to be no need for it to be this high and have no benefits to the patient (e.g. faster recovery) that has been proven, up to the time of me writing this,
Isolation
THE RETURN OF THE STEM CELLS!
This is simply connecting you to a machine and pumping the stem cells back into your body. Seems to take a while (half an hour to an hour) and then it's over, however the process has an effect on the body (low blood pressure, dizziness, pressure in chest area...). So it is not painless, just needs to be gotten through.
As an FYI: They store your stem cells in cryogenic fluid!
As stated previously these are just notes taken from a couple of examples, however each patient may vary.
Around 3 time a day, a check of your blood pressure, pulse and temperature. If your BP goes above 130 (higher) or 90 (lower) then they get concerned and if your temp rises, What happens to these affects the doses of medicines they pump into you.
Your weight is also checked at least once per day (most say pre-breakfast).
IV drugs administered after first set of checks, usually 2 bottles (but size/dose does vary). Plus a pack of pills, which are tailored to you for taking 2/3/4 times a day.
Repeat for quite a while, so relax and enjoy!
As you go through the process initially your results will fall, as the new cells take over they should rise. Below is an example of the different measures, showing them falling after the first three days - this is normal:
This is simply connecting you to a machine and pumping the stem cells back into your body. Seems to take a while (half an hour to an hour) and then it's over, however the process has an effect on the body (low blood pressure, dizziness, pressure in chest area...). So it is not painless, just needs to be gotten through.
As an FYI: They store your stem cells in cryogenic fluid!
As stated previously these are just notes taken from a couple of examples, however each patient may vary.
- In theory all luggage and clothing goes, so you are supposed to be left in hospital gowns only, but it is possible to keep some clothes?
- Double exterior windows closed and not to be opened at all.
- Air Filtration systems turned on and all doors out closed except for bathroom and kitchen visits etc.
- UV lighting in the bathroom, only off when the patient is in there
- Staff entering in full covering (gowns, masks etc)
- Shower, once a day
- Hygiene washes twice a day, one after the shower
- No toothbrush, just specific mouthwash -3 times daily
- Limited food types oatmeal, only baby yogurt, no fresh fruit, nuts, vegetables, lots of other limitations that mean bland food
- Bedding changed each day and room cleaned thoroughly (1 hour to clean the bed - patient in shower during this time)
- All dishes washed specially
- No visitors
Around 3 time a day, a check of your blood pressure, pulse and temperature. If your BP goes above 130 (higher) or 90 (lower) then they get concerned and if your temp rises, What happens to these affects the doses of medicines they pump into you.
Your weight is also checked at least once per day (most say pre-breakfast).
IV drugs administered after first set of checks, usually 2 bottles (but size/dose does vary). Plus a pack of pills, which are tailored to you for taking 2/3/4 times a day.
Repeat for quite a while, so relax and enjoy!
As you go through the process initially your results will fall, as the new cells take over they should rise. Below is an example of the different measures, showing them falling after the first three days - this is normal:
If your platelet count drops to below 10 they will need to infuse you with more to avoid any risk of internal bleeding not clotting.
By around day 7 or so (+ or - a few days as everyone is different), that is when your blood cell count drops to the lowest point. This is known as Neutropenic State (and your hair comes out!). This is the day you will know the stem cells are working as the count will now start to rise.
Once you Leukocyte levels reach around 1 million, the strict isolation can (or should be) gradually relaxed - as everything is progressing as it should. This should be around 2 to 3 weeks after the infusion, meaning that some normality can be resumed and it would be possible to come out of isolation and go home (around 1 week or 2 later). The timescales are up to the hospital/consultants and your individual capabilities.
There are still 3 to 6 months plus of recovery, with multiple hiccups along the way, but this is a major point of advancement and very good.
Notes: Whilst in isolation, make sure you have plenty to do, after all you are on your own!
During all this you will feel, weak, dizzy, tired and in a certain amount of pain
All the numbers etc. will vary between patients
The best advice I've seen through all this is:
KEEP POSITIVE AND SMILE - YOU ARE BEING HEALED!