This leaflet is for anyone who has Graft versus Host Disease (GvHD) and has been referred for with ECP treatment.
Following a donor stem cell transplant, there is a possibility the donor cells will react against your own cells. This is known as graft-versus-host disease (GvHD). GvHD doesn’t mean your transplant has failed. In fact the donor cells may still be attacking any cancer cells that have survived. However, the donor cells are also attacking other organs, causing the unwanted side effect of graft-versus-host disease. There are two types of GVHD, acute and chronic. Acute GvHD usually happens within the first three months after a transplant but can happen later, for example after withdrawing immune suppression or after donor lymphocyte infusion (DLI). Chronic GvHD usually happens more than 100 days after transplant.
The effects of GvHD can be mild involving the skin, intestines or liver causing rashes, diarrhoea or alterations in your liver function tests. The symptoms will depend on which parts of the body are affected. In more severe GvHD, these symptoms can greatly affect the quality of your life.
The initial treatment for GvHD is the use of immune suppression drugs such as steroids, Tacrolimus or Cyclosporin. Sometimes GvHD can be difficult to control despite the use of these drugs. Furthermore, there are long-term side effects from using drugs such as steroids so we like to wean you off this medication as soon as we are able. If we are unable to reduce steroid dosage without GvHD flaring up or if we are finding it hard to control GvHD with tablets, your consultant may recommend that you receive treatment with ECP.
What is extra corporeal photopheresis?
Also referred to as photopheresis or just ECP, this treatment is relatively safe with very few side effects. It has been used for more than 30 years, initially for the treatment of cutaneous T-cell lymphoma (CTCL) and more recently in organ transplant patients.
Extra corporal photopheresis is a complicated term but can be broken down as:
Extra Corporeal meaning outside the body.
Photopheresis meaning light.
ECP involves the separation of white cells from your blood by a blood cell separator machine, the addition of a drug to these white cells, exposing these cells to ultraviolet light and returning them to your body. The specific type of white cells we target are the T-Cells, which cause GvHD.
ECP consists of a number of individual treatments usually given over several months. It is likely that you will continue on immune suppression drugs while having ECP treatment. However, your consultant will be aiming to reduce this medication if you respond to ECP.
ECP is usually an outpatient procedure in the apheresis unit on E10, opposite ward C10 Level 10, of the main hospital block. There is a map with directions to the apheresis unit at the end of this leaflet.
Each individual treatment takes between 1 and a half to 3 hours.
You will often have two consecutive procedures every fortnight for a period of three months before the therapy is reviewed. It may then be stopped, continued or reduced in frequency. In this case your consultant will discuss with you how many treatments you are likely to need before a further review.
Some patients will see results in a few months while for others it may take a little longer. Please don’t be discouraged as it is usually a gradual process. The average wait for any response is about nine months.
What will happen during your ECP?
For 18 hours before each procedure, it is important to avoid fatty foods (See the ECP diet sheet you will have been given) as these can prevent the ECP from working properly and certain foods can increase the sensitivity to the Methoxalen or UVADEX drug used to treat the white blood cells.
Avoid taking any antihypertensive (high blood pressure) medications on the night before and days of treatment and on the morning of a procedure do not take any diuretics (water tablets).
Prior to every procedure staff will assess and record your blood pressure, heart rate, temperature and pulse oximetry, as well monitoring your overall health. Blood tests will be taken to monitor your FBC count, liver and kidney function and to check your immune suppression levels.
You will be connected by tubing from either a needle in each arm or your central line to draw blood into a cell separator.
Once in the machine the white cells are separated out, treated with Uvadex (Methoxsalen), which makes them sensitive to ultraviolet light, exposed to ultraviolet for between 15 and 30 minutes then returned to your body in one of the lines.
When your treatment is finished you will be disconnected from the machine, a further review of your blood pressure, pulse and other relevant factors will be taken before you are able to leave.
You will receive your treatment on the Apheresis Unit, from staff who have all undergone training in ECP, and will be happy to answer any questions you may have during your treatment.
Any further review will be made by your consultant in your next clinic visit. Routine medical queries should be reserved for clinic appointments as this is a nurse-led unit. Emergency issues will be referred to the on-call medical team.
If you require further prescriptions, please contact the BMT specialist nurse before your visit as this will minimise a pharmacy wait.
During the procedure
This procedure is not painful but there may be some discomfort in inserting the needles. Some patients may feel dizzy or lightheaded or may experience tingling/numbness in the lips or dry mouth. You may even feel a slight vibration from the procedure. All these can be managed by the use of additional supplements.
These symptoms can be managed by our trained staff through the use of additional supplements. Please feel free to ask any questions during this process; our staff are only too happy to help and will stay with you during the treatment.
After the procedure
Fatigue, itchiness, increased redness and fever can occur up to eight hours after the procedure.
ECP will make your eyes and skin more sensitive to ultraviolet light. In order to minimise long term damage from this, it is advisable to wear sunglasses and avoid exposing your skin to the sun even on cloudy days. Long sleeved clothing and factor 50 sunscreen are also recommended.
Apheresis Unit: 01223 256272
BMT Specialist Nurses: 01223 217224
Addenbrooke’s has a 24-hour Emergency phone number for any haematology patient requiring advice: 01223 274225.
If you have any questions please speak to your consultant, BMT nurse specialist or a member of the Apheresis team who will be happy to assist you.
As many of the procedures are performed on consecutive days, you may prefer to stay in one of our on-site hostel rooms. If you require accommodation, please contact the BMT secretary or another member of the team.
You will be able to eat and drink during the procedure and we provide a selection of tea, coffee, sandwiches and biscuits.
You may wish to have a family member or friend with you or bring an iPad, book or DVD player. Please remember to bring headphones for the comfort of other patients. As with any procedure there may be side effects and having a family member ready to drive you home may be of benefit.
It may be a good idea to keep a diary to track of your Appointments, Steroid and immunosuppressant doses and results as well as other clinical results as needed. As these procedures are repeated so often this information is easily forgotten or overlooked.
The apheresis unit is opposite ward C10 Level 10, of the main hospital block (See map below).
We are smoke-free
Smoking is not allowed anywhere on the hospital campus. For advice and support in quitting, contact your GP or the free NHS stop smoking helpline on 0800 169 0 169.
Help accessing this information in other formats is available. To find out more about the services we provide, please visit our patient information help page (see link below) or telephone 01223 256998. www.cuh.nhs.uk/contact-us/accessible-information/
Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
Telephone +44 (0)1223 245151