Uncategorized – The Lymphoma Diaries

Introducing Lionel

After issues with finding veins in my very swollen arms, I reluctantly agreed to have a PICC line fitted in order to administer my chemotherapy treatment more easily.

A PICC line (peripherally inserted central catheter) can be used to give chemotherapy and other medicines as well. It is a long, flexible tube which is inserted into a vein in the upper part of the arm. The line travels along the vein in the arm and to a large vein in the chest, near to the heart. The line can be left in for the duration of treatment and I was told that the chemotherapy drugs can be given quicker through a PICC line than through a canula.

PICC lines can also be used to take samples of blood for testing. This was a very good piece of news for me as it means that needles do not need to be involved every time you need your bloods checking or are having treatment.

I was scheduled to have my PICC line fitted just before my second chemotherapy treatment by the ward sister on the teenager and young adult unit at the hospital. I was given a local anesthetic to numb the area where the PICC line was going to be put in. The nurse used an ultrasound scan to help find the best vein to use and a magnet placed on my chest helped to guide the line into the correct position. I get very queasy with my own blood so distracted myself from looking at my arm by watching the screen which showed how far the line was from reaching the intended position – very clever!

Apart from the initial administration of anesthetic I didn’t feel any pain whilst the procedure was happening. Once the anesthetic had worn off I was left with a quite sore and bruised feeling arm. One of my specialist clinical nurses visited my house the next day to change the dressing as there had been quite a bit of bleeding.

Here is how my arm looked on the evening of the line being put in:

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My very witty friend came up with a very fitting name for my PICC line who shall now be know as ‘Lionel’!

I was told by other patients at my hospital that they had experienced a few days with a bruised feeling in their arms but then had gotten completely used to having the lines in. Unfortunately this wasn’t the case for me and I experienced a few weeks of discomfort. This may have been because of the problems I had with swelling in my arms at the time of my diagnosis (or maybe I’m just awkward!). In particular I found it difficult to get comfortable at night in bed whilst laid down and kept accidentally knocking Lionel. After a while it became less noticeable but I’m always conscious that it is there and avoid tight fitting, long sleeved tops.

The PICC line needs flushing regularly to stop it becoming blocked and the cap and dressing changing once a week to reduce the risk of infection. At first I had a district nurse who visited my house to do this but I found it more convenient to visit my local clinic as I could choose an appointment time which suited me.

You must be careful not to get the PICC line wet. I was provided with a special waterproof cover to cover the line whilst taking a shower or bath. At first I used this as instructed but it kept catching on the line when removing it and hurting so I found myself taking baths and taking great care to keep my arm out of the water at all times so that it didn’t get wet.

For me the PICC line is a bit of pain as I’m always conscious of it, especially when trying to get comfortable in bed at night. After I first had it inserted, it was really quite sore and painful but this has improved with time. However from my viewpoint the positives greatly outweigh the negatives; namely no more needles and it being so quick and easy to take blood samples and administer treatments. If any one is skeptical or reluctant about having one fitted (like me) I would encourage them to consider the convenience of them.

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My Diagnosis

In February 2019 I was diagnosed with primary mediastinal large B-cell lymphoma (PMBCL). It is a rare type of non-Hodgkin lymphoma which is most common in young women.

My journey to diagnosis was a very dramatic one involving a circus in Honduras and warrants at least an entire post (or maybe even a soap opera series) of its own!

What is primary mediastinal large B-cell lymphoma?

PMBCL is caused by the body making abnormal white blood cells (B-cells) which fight infection. These lymphoma cells build up in the thymus lymph nodes in the mediastinum which is the area between the lungs and breast bone.

Symptoms

The symptoms of PMBCL include:

coughing
an aching in the chest
breathlessness
hoarseness
swelling in the neck, arm and face

The lymphoma can press on the superior vena cava which is the vein carrying the blood from the upper half of the body to the heart and cause an obstruction.

Some people may also present with B symptoms which include:

drenching night sweats
high temperatures/fevers with no obvious cause
unexplained weight loss

Other than a persistent cough which had been present for about 3 months I had not noticed or acknowledged any other symptoms until my face began to swell. As a fit and healthy figure skater travelling in central America, I had put the fatigue and night sweats down to the hot climate in which I was living. I had been to see several doctors who had given me medication for the cough which had been troubling me, but they had assured me that it didn’t seem to be anything sinister and I had continued as normal.

I realised that something was wrong when I began to wake up every morning with a very swollen and puffy face. At first I thought that I was suffering from some sort of allergic reaction and tried taking anithistamines and eliminating certain things from my diet and routine in order to find a cause. The swelling was always worse when I had just woken up and then gradually subsided throughout the day. After a week of this facial swelling and my cough still showing no signs of improvement, I went to the local emergency room and this set the ball rolling for the various tests and scans which would lead to my diagnosis.

Treatment

PMBCL is fast growing and needs to be treated quickly. The usual treatment plan is chemotherapy and some people may also need radiotherapy. Rituximab is often used with chemotherapy to treat this type of lymphoma. It works by targeting proteins on the surface of B-cell lmphocytes and makes the body destroy these cells.

My medical team decided on a treatment plan for me with 6 cycles of Rituximab CHOP (R-CHOP) chemotherapy and GCSF injections in the middle of each cycle. A PET scan will be carried out after the 4th cycle to formally review the treatment and again at the end of the treatment to assess whether or not radiotherapy will be needed. If possible my consultant would like to avoid radiotherapy but given the size of my lump at diagnosis it seems likely that it will be required. This will be confirmed at the end of the 6th cycle of R-CHOP.

The Low-Down On Lymphoma

Before my diagnosis I had heard the word “lymphoma” before but in all honesty I knew nothing more about it other than it’s name.

Lymphoma is a type of blood cancer that starts in the lymphatic system. There are two main types: Hodgkin’s lymphoma and non-Hodgkin’s lymphoma. Both are caused by abnormal behaviour by white blood cells which fight infection and there are actually over 60 different types of lymphomas in total. In most cases there is no known cause.

It can be difficult to diagnose lymphoma because the symptoms are similar of other less serious conditions. Symptoms can include: swollen lymph nodes, fatigue, unexplained weight loss, night sweats and itching. Not everyone gets the same symptoms and to the same extent.

Diagnosis can be made with various scans and blood samples. Confirmation is made by a biopsy which will establish whether the lymphoma is Hodgkin or non-hodgkin and identify exactly which type of lymphoma is present.

My diagnosis is a primary mediastinal large B-cell lymphoma. My medical team helped explain my condition to me and in particular I found that information provided by Macmillan Cancer Support was clear and easy to understand what this meant.

Internet searches are a minefield and can bring up lots of unverified and false information so it’s best to stick to reputable sites if you need to read things online. Here are the ones I consider to be most useful:

*** Please note that the information I have provided above has been condensed from the literature given to me by my medical team at the hospital in an attempt to provide a brief overview of the condition. Every attempt has been made to make sure that this is not misleading to the reader and from a reputable source. ***

Welcome!

Hello my name is Lucie and I’m 27 years old from the UK. After being diagnosed with non-Hodgkin’s lymphoma in February 2019 I found it frustrating not being able to find many answers and information about certain things regarding my cancer online. I wanted to know how long I could expect it to take for my hair and eyebrows to grow back after chemotherapy and struggled to find anything relating to people’s experiences with this. I plan to record my journey with lymphoma treatment and recovery in the hope that it could help even just one person in the future.