Drugs

Treatments for cancer include, chemotherapy, radiotherapy, surgery, hormonal therapies and biological therapies. See Macmillan for more information. The treatment which I received was a course of R Chop Chemotherapy. R-CHOP is named after the initials of the drugs used, which are, with links to more information at MacMillan:

  • rituximab – is a monoclonal antibody
  • cyclophosphamide – a chemotherapy drug
  • doxorubicin  a chemotherapy drug that has the chemical name hydroxydaunorubicin
  • vincristine – a chemotherapy drug that was originally known as Oncovin®
  • prednisolone – a steroid.

On the same day as my first cycle, just before the R-Chop chemotherapy was ready I was given anti-sickness (anti-emetic) drugs.  I also began a five-day course of 100 mg per day of prednisolone tablets followed by 16 days of just 20mg of prednisolone. That made 21 days or three weeks for the cycle known as R-CHOP21. Other drugs I had to take were, 300mg Allopurinol, 305mg Ferrous Fumarate, 480mg Co-Trimoxazole, 900mg Valganciclovir,500mg Calcichew, 50mg Diflucan, 20mg Omeprazole, 5mg Odansetron, 15mg Metocloprimide, 10g Sodium Bicarbonate, 400mg Dipyridamole,.Sub Cut injection of Lenograstin. Some of these drugs were treatment for the kidney transplant which I had received.

After the rest period the same treatment was repeated again, which began the next cycle of my chemotherapy. Usually 6–8 cycles are given over a period of 3–4 months. I received 6 cycles which made up a course of treatment.

I found myself taking a lot of drugs and it was obvious that I had to have some organisation in order to make sure I took the right drugs at the right time and also to ensure that I had adequate stocks.  With my partner we developed a simple chart with the drugs to be taken and the times on the left side of a sheet and days of the week across the top. I also took stock once a week to ensure that I had sufficient drugs in hand, I settled on ten days supply as being the re-order point and along with the pharmacy helping.by obtaing repeat prescriptions from my doctor I rarel found myself short of any drugs. Some drugs had to be taken 3 or 4 times a day others just once a day or even once per week. Reading the instructions on drugs was very important became second nature to me. I found that some HAD to be taken on an empty stomach, at least one hour before food and you could not lie down for at least 30 minutes. Other drugs HAD to be taken just before food or even just after food. Using the drug sheet to keep track of the different requirements was really useful and saved me from going totally mad.

As well as these treatments there are also what is known as complementary therapies, most often used by people like me with cancer. These therapies are used to to give support through cancer and its treatment. I had regular sessions of Reiki which I found to be effective on two levels. Firstly I found that it had a relaxing and calming effect and secondly it helped to make various pains more bearable with less drugs.

Prescriptions

Because I live in England I would normally pay for prescriptions as follows;

Prescription costs as of April 1 2011
The current prescription charge is £7.40 per item.
A three monthly PPC is £29.10. This saves you money if you need four or more items in three months.
A 12 month certificate is £104.00 and saves money if 15 or more items are needed in 12 months.

For people living in Wales, Northern Ireland or Scotland all prescriptions are free. Because I have cancer I applied for a certificate (FP92A – clearly marked 1 January 2009) to allow me to get free prescriptions. The exemption certificate (FP92A – clearly marked 1 January 2009) for cancer includes, Cancer, The effects of cancer or The effects of cancer treatment. The certificate lasts for 5 years and can be renewed as many times as I need. I just the certificate to the pharmacist when I go to get my medicines. Application was via my GP or I could have got it from my cancer clinic.

If I had already been entitled to free prescriptions, i.e.over 60 years or under 16 years of age or receiving a relevant benefit, such as income support, I could have still applied in case my financial circumstances had changed.

Most pharmacies are ( like mine ) happy to help out by doing repeat prescriptions and may even have a delivery service. This will ensure that I always have enough stock in hand.

Exposure To Sunlight

Too much sun is bad for you! Ever heard that? The sun is a known cancer-causing agent and can promote for skin cancer development even though some melanomas are not sun or UV-light related.  On top of that some of the drugs used in chemo can make your skin more sensitive to damage from the sun. So because I was receiving chemotherapy I had to be extra careful of sunlight, specifically ultraviolet (UV) light emitted by the sun or an artificial tanning device, such as a tanning bed or sun lamp. UVA and UVB light can both be harmful. UVA rays are 30 to 50 times more prevalent. They are present with relatively equal intensity during all daylight hours throughout the year, and can penetrate clouds and glass. So beware year round.

I never used sunlamps so that wasn’t a problem and I have fair skin so after treatment I always coated myself in a factor 50 sun lotion. Now I always ensure that I have sun protection and this has become standard for me now even after treatment. Try to get this on prescription from your doctor. lt was also important for me to cover my head ( having gone bald )  to avoid sunlight so the Bandarfs were great see JML Direct. I ignored the photos of women demonstrating because if they’re good enough for Johnny Depp and Adam Ant they’re good enough for me. I found some headgear with specific protection against UV light at mountaneering, camping and ramblers shops and although they were a little more expensive I thought they were worth buying.

Another factor which I had to take into account was my recent kidney transplant and the immunosuppressive drugs I have to take now for the rest of my life. Suppressing the immune system limits the body’s ability to recognize cancer cells and eliminate them. Research shows that immunosuppression (suppression of the immune system) is associated with a 4-to 5-fold increased risk of developing melanoma. The risk increases if the person has one or more atypical moles or has already had melanoma. So its coverup for me every time for me.

 

Hair Loss & Skin Care.

Before I started the course of chemotherapy I was advised that some of the drugs would probably cause hair loss. I didn’t get a lot of advice about this aspect apart from an offhand comment that, ‘you’re probably a ‘bandana man’ and a nod of the head. My only thoughts about this didn’t have time to form but when I chatted with a female friend going through exactly the same treatment she told a different story. She had been offered specialist help via Macmillan and had an appointment to be fitted with a wig and receive some beauty therapy. Whilst it was unlikely that I’d want the same things I was a little disappointed that my own hair loss was being looked at so lightly. I decided to look for alternatives myself. Although being bald is possibly not a great problem to some men I felt that my hair was important to me and that in some ways the sudden loss could be a little upstting, especially as it was all to do with the cancer.

I and my partner researched the subject and had lots of fun coming up some crazy dyeing opportunities prior to hair loss through hats , caps and bananas to use when my hair fell out. My hair started falling out in handfuls in the second week of Chemo and I decided to shave it all off completely and take to wearing Bandarfs or Buffs or various names, which are simple headgear made of a tube of patterned material. I bought 6 to start me off from JML Direct online. I would say don’t be put off that usually they are pictured on women. I simply pictured myself as Johnny Depp and walked around like a pirate trying to keep the oo ahs to myself.. They can also be bought at walkers/ramblers/mountaineering shops and come in a variety of materials which are sweat proof and sunproof. Alternatively you can ask your specialist nurse or doctor about wigs which come free from the NHS. Initially I hated being bald thinking it made me look like a hard case out for trouble but there are so many men who shave their heads now that I was probably amongst the majority.

Miscellaneous Info

From the moment I heard those three words, ‘you have cancer’, I went through a gamut of emotions from denial to anger through guilt and remorse to total acceptance of the worst possible outcome or the best possible outcome. If you’re like me your emotions will swing back and forth every day or even two or three times a day. I think it is only natural to swing back and forth but I found the trick was to stabilise matters a little by asking questions and gaining lots of information. Here are some recommendations on problems which I had, in no particular order.

1. Hair Loss and Skin Care.
2. Exposure to Sunlight.
3. Prescriptions.
4. Drugs.
5. Dry Mouth or xerostomia.
6. Anxiety/Low Feelings.
7. Infertility/Impotence.
8. Side Effects.

Side Effects

Many people who have cancer or who have been treated for cancer develop symptoms or side effects that affect their quality of life. Sometimes the side effects of treatment, chemotherapy or radiotherapy, are more noticeable than the disease, especially in the initial stages. Care given to help patients cope with these symptoms or side effects is called palliative care, comfort care, supportive care, or symptom management. There is a useful fact sheet online produced by the National Cancer Institute, Palliative Care in Cancer, which answers many commonly asked questions on this topic.

Remember that there are treatments available for most side effects. Always talk to your medical team and ask for a solution and take their advice.Here are some effects that I suffered from with possible solutions;

Ulcerated mouth Corsadyl mouthwash1111
Dry mouth, no saliva 1111
Ulcerated mouth 1111
Ulcerated mouth 1111
Ulcerated mouth 1111
Ulcerated mouth 1111

9 Month Update

I have reached 9 months after I received a kidney transplant the news that I had Intravascular Lymphoma. A lot has happened in that time but the main items are;

1. My kidney Transplant is doing well.
2. Cancer is in remmission.

There are still problems in the aftermath but I feel a lot happier about dealing with any issues that come up. Recently I started meeting with a new therapist and have so far had 3 sessions. They have been useful in several ways. Firstly it is good to have someone to talk with in an unrestricted way. Dealing with friends and family can be difficult at times because there are complex issues involved. First and foremost is the feeling that you want and need to protect loved ones and although people say that sharing a problem is good, in my mind I always tread carefully and try to filter any information that I pass on. The fact is that nobody likes a moaner and sometimes I have felt that if I pass on everything that is happening to me then people will get;
A. tired or fed up of me.
B. inured to my situation.
C. scared or anxious when there may be no need.
I know that loved ones are keen to help in any way they can and that it is right and fair to involve them and share my experiences with them. It also helps to bond in the bad times as well as the good. In my mind though I did and still do feel a burden of responsibility to take care of others, even though they are taking care of me; it’s a fine balance.

For me it has been important to have people and/or organisations outside my immediate family. One of the first organisations I contacted was MacMillan Cancer Support and they had an office in the hospital. They do a tremendous job in supporting people in many ways, publishing brochures and a web site with information on every aspect of cancer, one to one consultations, advice on money worries, providing volunteers to help you or your family and much more. They undoubtedly provide a fantastic service and are always there for you. I met with several people there and they were lovely down to earth people who obviously wanted to help, however, I did feel that perhaps my broader needs would be served elsewhere.

My second call was to an organisation called Wirral Holistic Care Services who provide therapeutic cancer care. They offer hope, comfort and support to the many thousands of people living with cancer, through their network of qualified and highly dedicated nurses, therapists, clinicians and specialists – all of whom kindly volunteer so much of their time and energy for the benefit of patients. Therapies include, accupuncture, aromatherapy, healing, counselling, massage, reiki, reflexology, shiatsu and a lot more. For my first therapy I chose a a course of Reiki, meaning “universal life energy,”

Reiki is the name applied to a system of natural healing, which has evolved in Japan over the last century and is a non-intrusive technique carried out by practitioners using gentle placement of their hands in a sequence of positions over the recipient’s body to channel vital, therapeutic energies. It is a holistic therapy that treats the whole person – not just the symptoms – and has proven itself to be successful in mobilising a person’s natural healing processes to counteract stress and pain. The therapy can be administered through clothing with the recipient generally lying down or in the sitting position.

I went every Thursday for 10 weeks alongside some of my Chemotherapy and always found that it relaxed me and seemed to ease pains and tensions. It may not suit everyone but I can heartily recommend it as I looked forward to it every week and felt calmer when it came to having my Chemotherapy.

Q & A

This is a list of the questions which sprang to my mind along with a selection of answers given. Sometimes the answers may not have been what I wanted but I found it comforting to have some knowledge about what seemed important and even sometimes about trivial matters. You may have to go to several sources to get a satisfactory answer but remember any question, if it’s in your mind, is worth asking.

I have posted my questions and answers but also put in some general questions that you may want to ask. There are links to what I consider to be informative websites. Using the web for information leads you to thousands of pages, some useful some not. Some can be upsetting and possibly misleading but in my experience if the information is tempered with common sense and advice from a professional carer , doctor or specialist nurse surfing the web can be extremely valuable. Please be aware that the web is a wonderful resource but the interpretation of the information can sometimes be difficult. ALWAYS check with a professional.

Questions that I asked. Answers from various sources.
What exactly is the disease I may have? Intravascular B Cell Lymphoma
What does it do? There may be a wide range of symptoms with lymphoma. You may experience very few symptoms. Some people have no symptoms at all. Common symptoms may include:
excessive sweating, especially at night, fevers,
unexplained loss of weight, unusual tiredness,
a cough or breathlessness, a persistent itch,
abdominal pain or diarrhoea.
How do we find out if I have the disease? We will carry out a kidney biopsy and also a combined scan, a Pet and CT Scan which show us definitively if you have the disease.
What is the prognosis? As we will catch it in the very first stages, with treatment I am confident of a 70% success rate.
What is the treatment? A series of 6 to 8 rounds of R Chop Chemotherapy over a 5 month period.
What is R Chop Chemotherapy? R-Chop is the abbreviated name of a combination of drugs used in chemotherapy for aggressive Non-Hodgkin Lymphomas (NHL). It is a relatively new combination which adds the drug Rituximab – a monoclonal antibody, to the standard combination called CHOP. CHOP consists of four chemotherapy drugs (see the page on CHOP).Rituximab is administered as an infusion over a few hours on the first day of treatment, while the drugs of the CHOP regimen may be started the next day. The entire course is usually repeated every three weeks for 6-8 cycles.
What are the side effects of the treatment? Each person’s reaction to chemotherapy is different. Some people have very few side effects, while others may experience more. The side effects described below won’t affect everyone who has this treatment. Side Effects.Remember to tell  your medical team of anything affecting you and they will seek to help you. Nothing is too slight to mention to them.
What is outlook/percentage of success with treatment? Intravascular B Cell lymphoma (IVL) is a rare and aggressive variant of diffuse large cell lymphoma. IVL is defined pathologically by neoplastic proliferation of lymphoid cells within the lumens of capillaries, small veins, and arteries with little or no parenchymal involvement. Although yours is an unusual case and we are a little in the dark we think there is a 70% chance of success.
Will I suffer any pain? It is possible that there will be pain from the treatment and/or the disease but it can be controlled with some very effective drugs and alleviate any stress.
What are the alternatives? R-Chop Chemotherapy is the treatment recommended.’Complimentary Therapies’ run alongside conventional treatment whereas ‘Alternative Therapies’ may be instead of conventional treatment. All conventional cancer treatments have to go through rigorous testing by law in order to prove that they work. Always beware of ‘Alternative Therapies’ as they have not been through such testing. Some are not completely safe and can cause serious side effects. About Complimentary and AlternativeTherapiesIf you are considering using any complementary or alternative therapy it is very important to talk to your cancer doctor or specialist nurse for advice about the safety of the therapy. It is also very important to let your complementary or alternative therapist know about your conventional cancer treatment. Throughout the country there are organisations such as Macmillan , Maggies and many more which work to provide support free of any charge to those affected by cancer and provide ‘Complimentary Therapies’ such as Emotional & Psychological Support, Relaxation & Stress Management, Information, Benefits Advice, Support for Living with Cancer
Information and Resources.
Locally there is Merseyside and Cheshire Cancer Network,on The Wirral there is ‘Wirral Holistic Care Services’and in Liverpool, Sunflowers
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