High Grade Diffuse Large B Cell Lymphoma (DLBCL): help and tips on dealing with diagnosis and treatment from a Stage IV survivor
You might also be interested in reading an article where I was interviewed by Savio P Clemente from Authority Magazine for his new series 'I Survived Cancer and Here is How I Did It'.
If you, a loved one or a family member have recently been diagnosed with a high grade diffuse large B cell lymphoma (or DLBCL for short), then you are probably feeling pretty shell shocked. I know how it feels to be told 'You have cancer' as I was diagnosed with a Stage IV (4) high grade diffuse large B cell
lymphoma about 15 years ago.
It is not an understatement to say your world will be turned up side down. Your life will seem to revolve around hospital appointments, treatment and waiting for test results, but hang on in there - you will get through this.
I've put together some tips and hints from my experience to help you with:
dealing with a lymphoma diagnosis, particularly high grade diffuse large B cell lymphoma (DLBCL) for you, a loved one or a family member
coping with some of the side effects of R-CHOP chemotherapy
managing the emotional highs and lows that a lymphoma diagnosis and treatment brings, and this applies to both the patient and their loved ones
What is Diffuse Large B Cell Lymphoma?
Diffuse Large B Cell Lymphoma (or DLBCL) is a cancer of the blood. It affects blood cells in the immune system called lymphocytes and these can either be 'B' cells or 'T' cells. DLBCL affects 'B' cells and makes them act in a strange way and they don't die off when they should.
Who is most likely to get Diffuse Large B Cell Lymphoma?
DLBCL is most common in people aged over 60 but the rates rise over the age of 80. Men seem to be slightly more likely to get it and having a close relative who has had the disease may increase your chance slightly of getting it.
However, I was a previously healthy 45 year old female with no family history of the disease when I was diagnosed so did not conform to the usual statistics!
There are two types of DLBCL, high grade which means it is an aggressive and quick growing cancer, and low grade, which means it grows much slower. I was diagnosed with a high grade lymphoma.
What are the symptoms of Diffuse Large B Cell Lymphoma?
The most common symptom of DLBCL is swollen lymph nodes in the neck, the groin or the armpit. These will be painless but will probably grow quite quickly. Other symptoms can be tiredness, night sweats, weight loss (often with decreased appetite), itching or unusual rashes.
Just to confound the medical profession I had none of these symptoms! I just felt extremely ill and had started losing a huge amount of weight, at my worst about half a pound a day, and I lost my appetite. It was for this reason that I was a very late diagnosis.
How is Diffuse Large B Cell Lymphoma diagnosed?
DLBCL is usually diagnosed by Dr's taking a very small biopsy from one of your lumps and sending it off for analysis. They will also do various blood tests.
If you biopsy comes back as being positive for DLBCL then some more tests will be carried out to find out what 'stage' your lymphoma is at. This is just a way of finding out which bits of your body are affected so Dr's may carry out scans, lumbar punctures or take bone marrow samples.
My lymphoma was only diagnosed by a bone marrow sample analysis as there was nothing to take a biopsy from.
What is the treatment for Diffuse Large B Cell Lymphoma?
The treatment for DLBCL will depend on a number of factors. Firstly what stage your lymphoma is. There are 4 stages, stages 1 and 2 are usually known as early stage and stages 3 and 4 are usually called late stage or advanced stage.
It will also depend on your age, health and any other medical conditions you may have. Your Consultant is the best person to advise you on this as they will have all your unique details to help them plan your treatment.
Stages 1 and 2 are usually treated with chemotherapy, sometimes with the addition of an antibody therapy and/or radiation therapy.
Stages 3 and 4 are usually treated with chemotherapy and an antibody therapy and radiation if required.
I had a chemotherapy regime called R-CHOP. The 'CHOP' bit was the chemotherapy part and the 'R' was the antibody therapy. One part of my chemotherapy was given as a tablet and the rest was given by drip. I had a treatment every 3 weeks and how many treatments you have will be decided by your Consultant. I had 8 sessions of chemotherapy but did not have any radiation treatment.
I also received injections into my spinal cord to catch any disease that had got in to the brain area as chemotherapy does not pass the blood/brain barrier.
Stem Cell Collection during treatment for DLBCL
After receiving 5 R-CHOP sessions a bone marrow sample showed I was clear for DLBCL (although I still had another 3 treatments to complete). At this stage my Consultant recommended I do a stem cell collection in case I had a relapse in the future.
This consisted of a daily injection for about 5 days to boost production of my stem cells and then spending a day having them taken out of my blood. I was lucky to collect them in a day, sometime it can take 2 or 3 days but you are basically just sitting quietly letting a machine do the work so you can read a book or something so it's not too bad! It's a bit like giving blood but the machine takes your blood, spins it to take out the stem cells and returns the rest back to you.
These bags of stem cells will then be kept in case you need them in the future.
Can you run holistic therapies alongside chemotherapy for DLBCL?
It depends what you have in mind. ALWAYS speak to your Consultant before starting any type of treatment or taking any supplements or foods at the same time as you are receiving treatment for lymphoma.
I have a great interest in holistic treatments and alternative therapies but I was not naive enough to think that I could beat this illness without medical intervention. I decided to run holistic treatments alongside my medical treatment to help me deal with the emotional and physical side effects of my lymphoma diagnosis.
I used reiki which I found extremely beneficial in helping with anxiety and panic attacks. I did guided visualisations and listened to natural sounds such as thunder storms and rain, waves and sea and forests and birdsong. I often did this when I was in an environment that I did not like, for instance when I was in hospital, and found it helped enormously.
I bought myself some organic skincare and bath products to pamper myself with (your skin can take a real hit with chemo and get really dry and itchy so go for gentle formulations). I still tried to make an effort by wearing a lovely wig and putting make-up on. You need to love and care for yourself during such a traumatic time on the body and soul and give your body the time and space it needs to heal.
The outcome was positive for me. It was a long haul but I recovered. My life has not been the same since, but in such a positive way and I feel thankful for every day.
If you or a family member has been diagnosed with lymphoma, panic can set it. Here's my advice to try and help you through the journey and out the other side.
20 Tips for dealing with a Lymphoma Diagnosis
Know that getting a cancer diagnosis does not make you or your body a failure. Get that thought straight out of your head!
Get as much information on your diagnosis and treatment as you feel able to deal with. Some people will want to know the in's and out's of everything and other people will just rely on their doctor to tell them what to do. Just go with what you feel comfortable with, no matter what anyone else says.
Keep a note book and pen with you at all times. Use it for your appointments so that you can write down instructions and advice from your medical team (it can all be so overwhelming that you can forget by the time you get home). Make a note of the treatment that you will be having at the hospital. Also note down any medications you are on that you are expected to take yourself and then date, time and note every dose in your notebook so that you can remember when and how much you took. I had so much medication I had to carry it around in a basket! (Chemo brain is a real thing and you can forget the most simple stuff).
DON'T research your condition on the internet. I know, it is such a temptation, but I can promise you I always felt far worse and anxious afterwards. If you have any questions or queries on your condition or treatment then write them in your notebook and take them to your next medical appointment and ask the medical expert who is dealing with you. My Consultant told me that everyone is unique and only those treating the patient have the full picture to talk about a prognosis.
Realise that it is absolutely normal to feel anger/fear/panic and strong emotions in-between periods of calm, and this applies to the person with the diagnosis or their family, friends and loved ones. Don't be scared of what you are feeling, it is all part of a completely normal response to receiving shocking news.
Express your emotions. You will have good days and bad but just telling someone about how you feel and letting it all go helps enormously. Don't bottle your feelings up, sharing your fears truly is a weight lifted from your shoulders, and this applies to talking to your medical care team about your fears and anxieties too.
Consider counselling or asking for a referral to a 'buddy system'. I got to talk on the telephone with a lady who had been the same age as me with a young child when she was diagnosed with the same illness. I found it really helpful to speak to someone who had been through the same treatment and emotions that I was having and had come out the other side.
Don't feel ashamed to ask for help if you need it. We all like to think we can cope but you need to avoid added stress and responsibilities. You just need to concentrate on rest and recuperation. Can someone take your kids to school and pick them up again for you? Can people do your shopping/walk your dog? Can someone help clean the house for you? Whatever responsibilities you have try and delegate some so that you are not overwhelmed. There will be days when you will just feel rough so try and have someone that you can call at short notice if you need help. Just accept that you will have down days when you feel grim and try not to worry about it - it's just the drugs doing what they are supposed to do.
Don't be afraid to change your life if this feels right for you. Let go of any responsibilities, situations or people who you feel are not making a positive contribution to your life and your recovery.
Do what you need to make your life enjoyable, happy and comfortable. Do what fills you with joy whether that is reading, listening to music, meditating, gentle yoga, baking, creative hobbies or learning a new skill. Give your body and mind the time it needs to cope.
If you are on steroids as part of your treatment you will probably find they make you feel invincible on the days that you take them. Resist the urge to clean the whole house, go shopping and then paint the hall because you will feel worse and totally exhausted after you stop taking them. Pace yourself and maybe plan to do something on what will probably be your good days and have a friend over or just potter around the garden or home.
Sleep whenever you feel like it. There is no shame!
Take small walks every day outside in nature if possible.
Eat as healthy a diet as possible with plenty of veg and good quality protein. Homemade light soups are quick and easy to make and gentle on chemo tummies. Keep sugar to a minimum.
Use a natural/organic non fluoride toothpaste if you get mouth ulcers (very common) as it won't sting.
If you lose your hair you will probably lose all body hair. You may find yourself cold even when everyone else is hot so always make sure you have a jumper or coat with you even if you don't think you will need it. You may also lose the hair up your nostrils. This may not sound like a big deal but these filter all sorts of bits and pieces out of the air that goes up so be prepared to sneeze a lot!
You may find that certain smells that you have loved (perfumes, coffee) make you feel sick. This is normal and wears off when you finish chemo.
Sometimes the little side effects can become overwhelming. Speak to your doctor about any minor issues that you have that may be distressing you as there is always something they can do to help. I had so many mouth ulcers and a dry mouth I could barely eat but some 'fake spit' from the Dr helped. Sounds dreadful but worked well!
If you lose your hair you may feel like your head is bruised and sore (though no visible signs). I found that massaging aloe vera gel into it helped. You will also probably get dry, itchy skin, this was on of the worst things for me, I felt like my skin was splitting. I used a fragrance free organic body oil and it sorted the problem out for me.
You spend a long time in and out of hospital appointments and getting treatments and tests and waiting for results. It seems like your whole life revolves around this one thing. When suddenly you are finished with your treatment and appointments become less frequent, you may get very anxious and get panic attacks. This is completely normal. Something that has been part of the routine of your life has been taken away and there is a void which you feel should be filled. You may also worry, as I did, that without the constant tests and reassurance from doctors that the cancer may be coming back again, and every ache and pain or twitch sends your anxiety into overdrive. The best way to deal with this is by some form of relaxation technique like a spoken guided visualisation or meditation. You need to train your mind to do other things so as soon as you start to worry, read a book or watch a film. I found reading was the best thing as you have to concentrate when you read and you can get lost in a good book. Exercise helped me get rid of the excess adrenalin in my body so I would go for a walk and I always felt calmer and better when I got back. Ending treatment can be as much of an upheaval as starting treatment, so try and plan a new routine to replace it and place your trust in the wonderful medical profession, that they will have got your back and will be testing you as often as they think you need testing to keep on top of your personal situation.