Your probably wondering why we are putting these personal updates on the blog so anyone can read them and that's the point any one can read them and hopefully find comfort and strength for their own journeys. It also helps me possess all the information so it fits into place and keeps an accurate diary to keep track of dates, medicines, side effects and positive uplifting thoughts. Sean has no interest or stamina for all the detail and this blog update helps me keep all the information at my fingertips. It also explains to friends and family what we are going through so I don't have to...... which is probably the most draining challenge we have had to date.
Tuesday 6th March
We headed to The Beatson for the first time to meet our new oncology consultant and get to grips with our new chemotherapy regime. The plan is 6 cycles of chemo which will last 9 months with MRI checks every 2 cycles.
|Glasgow is now home to the UK’s most advanced NHS cancer centre. The new Beatson West of Scotland Cancer Centre |
The drugs usedPCV is named after the initials of the chemotherapy drugs used, which are:
In our circumstances we are not getting the Vincristine
How treatment is givenPCV chemotherapy can usually be given to you as a day patient. Before you start treatment, you'll need to have a blood test on the same day or a few days before. You'll also be seen by a doctor, specialist nurse or pharmacist. If the results of your blood test are normal, the pharmacy will prepare your chemotherapy drugs|. All of this may take a couple of hours.
Along with your your chemotherapy you'll be given an anti-sickness (anti-emetic) drug in tablet form.
You will then be given the
The lomustine and procarbazine capsules should be swallowed whole with a glass of water. Sometimes you'll be given the lomustine and procarbazine capsules to take at home. WE DID.
You may be given anti-sickness tablets to take with you. It's important to take the anti-sickness tablets regularly, even if you aren't feeling sick. This is because most anti-sickness tablets are more effective at preventing sickness than at stopping it once it has started.
How often treatment is givenYour doctor may use the word 'regimen|' (eg the PCV regimen) when talking about your chemotherapy. This refers to the whole plan or schedule of the treatment that you are receiving.
On the first day of your treatment you'll be given a dose of lomustine capsules. You'll also begin a 10-day course of procarbazine capsules, which may start on the following day. When you have completed the procarbazine capsules, you'll have a rest period with no treatment for the next 32 days. This completes what is called a cycle of your treatment. Each cycle lasts for 42 days (six weeks).
The course of procarbazine capsules can vary from hospital to hospital and may be more or less than 10 days. Your doctor, nurse or pharmacist will explain exactly how many days you need to take the procarbazine for and how many days rest you'll have.
After the rest period the same treatment will be repeated, which will be six weeks after your first medication. This begins the next cycle of your chemotherapy. Usually two or three cycles are given, then the treatment is reviewed.
Possible side effectsEach person’s reaction to chemotherapy is different. Some people have very few side effects while others may experience more. The side effects described here won't affect everyone who has PCV chemotherapy.
We have outlined the most common side effects but haven't included those that are rare and unlikely to affect you. If you notice any effects that aren't listed here, discuss them with your doctor, chemotherapy nurse or pharmacist.
Risk of infectionPCV chemotherapy can reduce the number of white blood cells, which help fight infection. White blood cells are produced by the bone marrow|. If the number of your white blood cells is low you'll be more prone to infections|. A low white blood cell count is called neutropenia.
Neutropenia can begin three weeks after treatment, and your resistance to infection usually reaches its lowest point 4–6 weeks after chemotherapy. The number of white cells in your blood then increases steadily and usually returns to normal before your next cycle of chemotherapy is due.
Contact your doctor or the hospital straight away if:your temperature goes above 38°C (100.5°F)
you suddenly feel unwell even with a normal temperature.
Bruising and bleedingPCV can reduce the production of platelets, which help the blood to clot. Tell your doctor if you have any unexplained bruising or bleeding, such as nosebleeds, bleeding gums, blood spots or rashes on the skin. You may need to have a platelet transfusion| if your platelet count is low.
AnaemiaPCV can reduce the number of red blood cells, which carry oxygen around the body. A low red blood cell count is called anaemia. This may make you feel tired and breathless. Tell your doctor or nurse if you have these symptoms. You may need to have a blood transfusion| if the number of red blood cells becomes too low.
Feeling sick (nausea) and being sick (vomiting)This may begin soon after the treatment is given and can last for a few days. Your doctor can prescribe very effective anti-sickness (anti-emetic) drugs to prevent or greatly reduce nausea and vomiting|. If the sickness isn't controlled, or if it continues, tell your doctor; they can prescribe other anti-sickness drugs that may be more effective.
Some anti-sickness drugs can cause constipation|. Let your doctor or nurse know if this is a problem.
Tiredness (fatigue)Feeling tired| is a common side effect of chemotherapy, especially towards the end of treatment and for some weeks after it’s over. It’s important to try to pace yourself and get as much rest as you need. Try to balance this with some gentle exercise, such as short walks, which will help. If tiredness is making you feel sleepy, don’t drive or operate machinery.
Numbness or tingling in hands or feetThis is due to the effect of vincristine and procarbazine on the nerves and is known as peripheral neuropathy|. Tell your doctor if you notice these symptoms or have difficulty carrying out fiddly tasks, such as doing up buttons. This problem usually improves slowly a few months after the treatment has finished. Sometimes these symptoms can persist; tell your doctor if this happens.
Very rarely, other nerves may be affected, such as the neck nerves. This may cause pain in the jaw or double vision.
Flu-like symptomsYou may develop flu-like symptoms a few hours after the treatment has been given. These include headaches, aching joints or muscles, a temperature, lack of energy (lethargy) and chills. If this happens, it's important to drink plenty of fluids and get some rest. If these symptoms continue for more than a day contact your doctor.
Less common side effects
Hair thinningThis is rare. If it happens, it usually begins 3–4 weeks after starting treatment, although it can occur earlier.
Skin changesProcarbazine can cause a rash, which may be itchy. Your doctor can prescribe medicine to help with this. Your skin may darken due to the excess production of pigment. It usually returns to normal a few months after the treatment has finished.
Changes to the lungsLomustine may cause some changes to the lungs|. Tell your doctor if you smoke or if you notice any coughing or breathlessness|.
DietRarely, procarbazine may interact with certain drinks and foods causing sickness, headaches, sweating, drowsiness and breathing problems. You may need to avoid red wine, alcohol and alcohol-free beers, mature cheeses, certain meats (salami, pepperoni) and yeast or beef extracts (OXO®, Bovril® and Marmite®). Your nurse or doctor will give you more advice on which foods to avoid.
EyesightLomustine may affect your eyesight, however this is very rare. Let your doctor know if you notice any change in your vision.
It’s important to let your doctor know straight away if you feel unwell or have any severe side effects, even if they’re not mentioned above.
Risk of developing a blood clotCancer can increase the risk of developing a blood clot (thrombosis), and chemotherapy may increase this risk further.
A blood clot may cause symptoms such as pain, redness and swelling in a leg, or breathlessness and chest pain. Blood clots can be very serious, so it’s important to tell your doctor straight away if you notice any of these symptoms. Most clots can be treated with drugs that thin the blood. The doctor or nurse can give you more information.
Other medicinesSome medicines, including those you can buy in a shop or chemist, can be harmful to take when you're having chemotherapy. Tell your doctor about any medicines you're taking, including over-the-counter drugs, complementary therapies| and herbal drugs|.
FertilityYour ability to become pregnant or father a child may be affected by taking this drug. For men, it may be possible to organise sperm banking prior to treatment. It's important to discuss fertility| with your doctor before starting treatment.
ContraceptionIt's not advisable to become pregnant or father a child while having PCV treatment, as it may harm the developing baby. It's important to use effective contraception while having this treatment and for at least a few months afterwards. You can discuss this with your doctor or nurse.
It’s not known whether chemotherapy drugs can be present in semen or vaginal fluids. To protect your partner, it’s safest to either avoid sex or use a barrier form of contraception for about 48 hours after chemotherapy.
Non-cancer admissionIf you’re admitted to hospital for a reason not related to the cancer, it’s important to tell the doctors and nurses looking after you that you're having chemotherapy treatment. You should tell them the name of your cancer specialist so that they can ask for advice.
Emergency contactsIt’s a good idea to know who you should contact if you have any problems or troublesome side effects when you’re at home. During office hours you can contact the clinic or ward where you had your treatment. Your chemotherapy nurse or doctor will tell you who to contact during the evening or at weekends.
About procarbazine and lomustine capsulesIt's important to take your capsules at the right times as directed by your doctor.
Always tell any doctors treating you for any non-cancerous conditions that you're taking a course of chemotherapy tablets that shouldn't be stopped or restarted without the advice of your cancer specialist.
Store the capsules in a dry place away from direct sunlight.
Keep the capsules in a safe place and out of the reach of children.
If your doctor decides to stop the treatment, return any remaining capsules to the pharmacist. Don't flush them down the toilet or throw them away.
If you're sick just after taking the capsules, let your doctor or chemotherapy nurse know as you may need to take another dose.
Don't take another capsule without telling your doctor or nurse first.
If you forget to take a capsule, don't take a double dose. Tell your doctor or nurse and keep to your regular dose schedule.
We took lomustine in the evening 30 minutes following the antiemetic called ONDANSETRON 8mg then settled down for the evening no side effects noted.
Wednesday 7th March 2012
Woke up with a large cold sore on top lip. Started to take procarbazine this morning again 30 minutes following anti emetic again no side effects noted. We had made contact with a charitable organization called Headway.
The Headway Helpline provides information, advises on sources of support, finds local rehabilitation services and offers a listening ear to those experiencing problems
We publish a range of booklets containing information about aspects of brain injury that will be helpful to those directly affected, plus professionals, employers and members of the public
We promote understanding of brain injury and its effects
We lobby for better support and resources to be made available by statutory health and social care providers
We campaign for measures that will reduce the number of brain injuries
Unfortunately funding for North Ayrshire has been withdrawn so we are only able to get information however Sean volunteered his services as a befriender and to participate in a support group in the East Ayrshire. We are still waiting to hear if they can use Sean. He just wants to be useful while off of work. Not really able to concentrate for long periods. Slept well.
Thursday 8th of March 2012
Day 2 of procarbazine Sean very tired now cat napping during day. Felt better after went out of the house. Went to a Brain Tumour Support Group in Kilmarnock based at Ayrshire Cancer Support.
Ayrshire Cancer Support has operated in Ayrshire since 1982 providing emotional support and practical help for cancer patients, their families, carers and the bereaved. Our aim is to ensure that help is readily available for everyone who needs it.
We were made to feel very welcome and believe it or not we participated and really felt the benefit of talking to other people going through the same experience and how they handle it. Especially those who were through the worst of it and making it in ordinary lives.
They referred us to some websites which we have looked into and found very useful
ASTRO FUND IS THE ONLY UK CHARITY TO FOCUS PURELY ON LOW-GRADE GLIOMASWe are working to find a cure for low-grade astrocytoma, oligodendroglioma, oligoastrocytoma and ependymoma brain tumours by raising money to support low-grade glioma research projects at the most innovative neuro-oncology research centres in the UK.
We also offer information, inspiration and support to help patients, carers, friends and relatives through the challenges of living with a slow growing brain tumour. Our on line support group includes over 250 people from all over the world, and is renowned for its welcoming, encouraging and well informed members who can expand upon all the information contained in this website.
Welcome to Turn2usWe are a charitable service which helps people access the money available to them – through welfare benefits, grants and other help.
Our free, accessible website has been designed to help you find appropriate sources of financial support, quickly and easily, based on your particular needs and circumstances.
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We help carers get the best for the person they care for make the most of their income
stay in paid work keep healthy get in touch with other carers for support
find a listening ear campaign for change.
They also told us we could get a free bus pass for Sean as he had to bylaw hand over his driving licence due to his epilepsy. On further investigation we called Strathclyde Passenger Transport on 0141 333 3211
they explained that we needed to go in in person to either themselves in Glasgow or our local Social Work department for the form for a National entitlement Card, they however were going to send us out another form to be filled out by one of our doctors, we are to take that completed form, a utility bill and a passport photo to the social work department and they would take care of it from there. 2-3 week we will have a concessionary ticket to travel the length and breadth of Scotland
Later Sean started complaining of bloatedness, abdominal discomfort and constipation which left him generally restless, eased with a hot water bottle. Slept well.
Friday 9th of March 2012
Day 3 of procarbazine last day of anti emetic ONDANSETRON 8mg will be changing to DOMPERIDONE 10MG TO BE TWO TABLETS TO BE TAKEN THREE TIMES A DAY WHEN REQUIRED this evening. Sean was feeling much better today now sees the wisdom of lactulose ( he wasn't that convinced it would help at the beginning)
Sean has developed a spotty rash behind his ear which is causing him to scratch and itch will get some calamine lotion tomorrow to see if it will take the heat and itch out of it. Took a photo so I could see if it has improved or worse tomorrow.
Saturday 10th of March 2012
Well the rash is worse now its covering the top parts of his arms front and back torso neck and face so we had to give the out of hours doctors a call to get it checked out. They recommended that a low immune patient comes into the out of hours clinic with all the bugs, couffs and sniffles..... just wonderful.... and that was after waiting 2 hours for first, one phone call for the nurse to phone back and then another with an appointmaent time and location for the clinic.
We were exhausted after trailing about trying to find a chemist that remained open however we got there in the end. We popped into some phone shops to see if we could find a phone that will help sean with his memory.. to remind him of appointments, medicines and to do lists. We have decided to give the Samsung Galaxy y a go.
Sean now has had more blood taken, anti histamines and calamine lotion. Need Sleep both of us!
Sunday 11th of March 2012
Seans napping on a fairly regular basis now every time he sits down within a few minutes hes asleep but I suppose thats for the best. He's trying to serve in his church callings to the best of his ability however he still feels that he can do more than he has the energy for. The rest of the family are starting to feel the strain at the moment everyones exhausted its just that mad time of the year and snapping at each other I'm finding it harder to talk to people (about the kids and how they are coping) without getting a little teary need to give my little collections another we review to help bring comfort..... I'll need to share some more... will soon when I have the time.
Monday 12th of March 2012
First day we haven't had to do anything or have any appointments so we went shopping...for food and I did a lot of cleaning and sean alot of sleeping.