Blood Cancer Uncensored is pleased to support the international #thisisbloodcancer campaign. Please consider sharing your story of what blood cancer means to you. This can be in text or video format. Email us on bloodcanceruncensored@gmail.com for a chance to be featured on our site. Today Phil shares his unusual treatment story.

This post contains detailed images and video from my own radiotherapy treatment.

How radiotherapy works:

Radiotherapy is a fairly common treatment for various solid tissue cancers, either as a treatment to cure the cancer or to shrink tumours prior to surgery. However it is not as commonly used in blood cancers.

Radiotherapy works by applying radiation, in most cases X-Ray radiation, to the tumours. The radiation kills the cells by damaging the DNA of the cells, although this also damages healthy cells. The healthy cells have mechanisms for repairing themselves whereas cancer cells do not.

Applied in fractional doses over a period of days or weeks, the damage accumulates in the cancer cells until they die, while the healthy cells will largely survive, as they are able to repair themselves to some extent between each treatment.

While the treatment is commonly with X-Ray radiation, of the same type used in X-Ray imaging and CT/CAT scans, the dosage used for imaging is much lower than that which is used for radiotherapy. Radiation dosage is measured in units called Grays (denoted as Gy), a standard 2D abdominal X-Ray exposes you to around 0.0007 Gy, an abdominal CT scan is a little over ten times that at 0.008 Gy.

Radiotherapy treatments are applied in doses (commonly referred to as fractions) of around 2 Gy at a time until the desired total dose is reached. For solid tissue cancers this can be anywhere from 60-80 Gy total, for lymphomas this will more typically be 20-30 Gy. The fractions will usually be applied daily, with weekends off or other breaks in treatment to reduce the severity of any side effects.

There are various side effects to consider with radiotherapy. In the short term the common side effects are fatigue, skin irritation along with hair loss in the treated area. The skin irritation can recover fairly quickly within days or a few weeks after treatment, any hair loss may be temporary and recover either partially or completely in the weeks and months following treatment but can sometimes be permanent.
There are also longer term side effects to consider, which will vary depending upon the area being treated. For example, when treating the neck there is an increased risk of thyroid disfunction in the future which will require monitoring with blood tests. There is also a slightly increased risk of developing other cancers in future as a result. However your doctor will always discuss the possible side effects with you, and balance any possible risks against the benefits for your specific condition.

Some more information on radiotherapy from Macmillan (a UK cancer charity) here
https://www.macmillan.org.uk/cancer-information-and-support/treatment/types-of-treatment/radiotherapy
and from the USA’s NIH – National Cancer Institute here
https://www.cancer.gov/about-cancer/treatment/types/radiation-therapy

Radiotherapy in blood cancer:

Radiotherapy is not as common in blood cancers as it is in solid tissue cancers, especially in chronic blood cancers such as CLL (Chronic Lymphocytic Leukaemia), although there are some blood cancers where it is used, typically lymphomas as there needs to be a mass to treat. The primary reason for this is that blood cancer is generally speaking a systemic condition i.e. since it is in the blood it is often already spread throughout the body even at an early stage unlike solid tissue cancers which are just in one place, and consequently radiation cannot often be used to treat the entirety of the cancer.

Since radiation treatment itself carries inherent risks, it is only used where its effect is worthwhile. Commonly this is judged to be:
– Where the treatment may be curative for example at a very early stage of a lymphoma where only one or a few lymph nodes in one location are affected. This may be used in both acute and chronic blood cancers as long as it is at an early stage and believed not to be present elsewhere in the body.
– For what is known as a consolidation treatment, after chemotherapy or other systemic drugs therapies (R-CHOP, FCR, Venetoclax+Obinituzimab etc.) to ensure that the cancer has been completely eliminated. This is common in acute blood cancers, such as Diffuse Large B Cell Lymphoma following R-CHOP treatment.
– As a palliative treatment to relieve symptoms and improve quality of life, where the cancer is considered terminal and therefore the long term side effects are not a primary concern.

My experience of Radiotherapy to treat SLL:

My diagnosis is SLL (Small Lymphocytic Lymphoma). This is a similar condition often considered a subtype of CLL (Chronic Lymphocytic Leukaemia) except that it manifests primarily in the lymph nodes and sometimes in the bone marrow rather than in the blood as with typical CLL.

At the point of treatment I was not expecting radiotherapy to be an option that was on the table for the reasons mentioned above. I had significantly affected nodes in my neck (up to 8CM!) a few minimally affected nodes in my abdomen and some minimal bone marrow infiltration.

I was very surprised to find my consultant, one of the leading experts in the country in CLL/SLL, suggesting radiotherapy just to treat my neck due to severe pain and other issues it was causing me. The argument for this was that my neck was in fairly immediate need of treatment, while none of the rest of condition warranted any treatment at all.

Starting the most favourable drug based treatment (Venetoclax+Obinituzimab) at this stage while effective for treating my condition, would increase the chances of the drugs being less effective if or when my condition relapsed at a future time. On this basis I agreed to proceed with the treatment.

The first stage of the treatment was to have a plastic mask mould made of my head, this mask is used to fix your head and shoulders in place on the table during the scans and radiation treatments to ensure that the radiation is targeted accurately on the correct location for every treatment.

The mask starts out as a flat sheet of plastic, which is soaked in hot water to soften it and then placed over your face as you lie on a bed.

The nurses then mould the plastic closely to the shape of your head and face by pressing it gently into you.
An opening will be made around the nose and mouth so you can breathe and the plastic is clipped in place the brackets attached to bed behind your head. You must then lie perfectly still for 10-15 minutes while the plastic cools and hardens.

The mask is then used to hold your head in the correct position on the bed each time you go in for treatment.
When you enter the treatment suite you will lie down on the bed, and when ready the treatment team will bring the mask down onto your head and clip it to bed to hold you in place. It can take some wriggling and manoeuvring to ensure you are in the correct position, the height of the bed will also be adjusted so your distance from the radiation emission and consequently the size of the treatment field is the same every time. This is guided using lasers to line up your position relative to the machine, as well as a projection of where the radiation field will be on your skin.

The machine itself operates by rotating around the bed in order to apply the radiation from the appropriate angle, in my case one exposure from above and then one from below (or vice versa). The same machine can also take 2D X-Ray images which may be done before the treatment to ensure everything still lines up as expected.

I am glad, and fortunate, to say that my treatment was very effective. Radiotherapy can have mixed results on lymphomas, sometimes having only a minimal effect on the lymph nodes. My treatment was initially planned to be a dose of 30 Gy in 15 fractions over three weeks, being treated every week day with weekends off. My progress was reviewed after 10 treatments and the size of nodes had already reduced so dramatically that my treatment was cut short to 24 Gy in 12 fractions.

Two months on from treatment and I am feeling extremely well. The only lasting side effect at the present time is that I’ve lost the hair from my beard on the treated side of my face; I am hopeful it will grow back in the coming months but either way it was well worth the relief from my symptoms.
As mentioned in the earlier part of this post, I will have to have annual blood tests for thyroid function. Because around half of my thyroid gland was affected by the radiation, I am at risk of developing underactive thyroid; however, this may not happen and if it does it is very manageable.

I cannot praise highly enough the quality of care I received at my hospital (The Christie, in Manchester, UK) both the staff and the hospital facilities are top notch, my sincerest thanks to them all.