Tuesday, 24 February 2009

ABVD Cycle 1, Day 15

Rang the benefits line before we left for chemotherapy, they don't make it easy, was on the phone for 45 minutes!!! Stopped me thinking about going to get pumped with more drugs that would probably take me off my high though! My consultant was pleased to see that the tumour on my thigh had further reduced from last time and the tenderness had gone. I also said I thought my abdomen was less distended and he agreed. It was a good consultation, at the end he said I looked more well in myself, I tended to agree with him and he said it’s often the case when people with Lymphoma undergo chemo they feel better, as it subsides the symptoms of the disease. He said I was being very brave about it as he said there is no hiding around the bush I have advanced Hodgkin’s.

After the consultation chemo started. When the cannula went it it was a little tender but once dressed it was fine. Lunch came as I was having chemo, ham and mustard sandwich with jelly and I had mum’s bread roll too, the steroids had made me hungry again. Note next time bring snacks! Read Ok which featured Jade's wedding, very moving but some gorgeous photos. Read a lot of my Lance Armstrong book too although it was a little difficult just using my left hand! Also went through and deleted some of the hundreds of messages on my phone, re reading some of the ones people had sent and they somehow meant more to me now, reading them for the second time. People can say some really nice things. Deleted some but also kept the ones I might just need to look at again on a bad day. Before we left we made sure we had all our drugs and booked a chest x-ray for next time, with Bleomycin, they check your chest every cycle. Didn’t feel too tired or sick or anything, in a funny way chemo had just seemed routine today. For dinner we had pasta, Mum gave me loads, but I ate it all! Afterwards we had pancakes (being Pancake Day), on top of all the pasta I managed to eat 3 pancakes. It’s funny the steroids don’t make you feel full, although after all that lot I did feel bloated!

ABVD Cycle 1 - DONE!

Monday, 23 February 2009

The Time Between Chemo

  • Thursday I had my first introduction to sickness, woke up at 5am feeling nauseous and swiftly put my travel bands on, managed to get back to sleep for a few hours before I woke up again, this time it was nothing ginger nuts couldn't cure (a Jill tip!). Spent the afternoon making a drugs chart, to try and keep up with all the tablets I have to take and when, I have a basket of pills!!! Appetite has certainly been better, being on the steroids.

  • Friday had to go back to the hospital to have some bloods taken just to see how my body was responding to chemotherapy, its just this time I have to go back to the hospital as its the first treatment, after that I can just go to the GP for bloods which is closer. The run down to the hospital was OK dispute the snowfall the night before. Got perscribed more medication, more sickness tablets, stuff in case I got mouth ulcers because my mouth was starting to get tingly and constipation sachets! (some of the tablets bung you up!) Bit more of a disappointing day as I had to sleep again in the afternoon, but I did feel better in the evening (Leanne popped around and we pigged out on chocs!). My temperature although it rose a bit. wasn’t nearly as bad as it has been. Thank god the temperatures have seemed to have stopped.

  • Saturday (Valentine's day) I went down to the pub in the evening to see friends, felt like ages since I have been out, was nice to be out and about, they all made me laugh! Didn't stay out too long as got very tired...and everyone was getting too drunk, hehe, its hard being sober when everyone else isn't!

  • Sunday my back started to get very stiff again. I not suppose to take Diclofenic anymore with the chemotherapy drugs so I think that is why my back pain has returned! Rang my consultant about my back pain as the GP wasn't very sympathetic and arranged an appointment for Tuesday. A gentleman in the village popped around in the afternoon to give me a genealogy lesson, mum was hooked instantly and starter her family tree on ancestry.com, it is quite addictive, haven't quite got the concentration for it yet though.

  • Monday night was another restless night, was in quite a bit of pain with my back and stomach cramps. Went over to the hospital Tuesday morning, and saw my consultant. Felt very emotional in the car, its seems I can't wake up without something being wrong, felt sick in the car too which wasn't nice. Saw my consultant, he said the lump on my thigh had gone down already which was amazing, he thought the back pain was the lymphoma flaring up as the chemo was fighting it and prescribed me some pain killers. The rash on my skin could be a reaction to the Bleomycin or because my immune systems was low, so antibiotics for that, going to have to redo the drug chart! Also got some tablets for my stomach cramps! I asked about my bone marrow results and he thought he would get them later that day, but he suspected it would be in my marrow. Came away with mixed feeling, yet more drugs and wondering what the implications were if it was in my bone marrow.

The day ended better though, finally got my new camera out to play with it, its awesome and my Dr rang while I was asleep to say my bone marrow was clear, yippee one bit of good news!

Spent the rest of the week playing with my camera, and had a photography lesson, doing the family tree and shopping (even out shopped Leanne, a sign of more energy)!

Monday I had made an appointment to have my hair cut short at the hairdressers, I thought it was the best thing to do as I know I couldn't bare pulling long strands out...Can't say I like it but people have said it suits me...We will see it probably wont last long.

So that was the two weeks between first chemotherapy and the second, hopefully we will be able to get the sickness undercontrol so I don't feel sick pretty much the whole time!

Tuesday, 10 February 2009

First Step to Getting Better

Tuesday was the day of my first chemotherapy session. Didn't sleep well and felt sick on the way over to the hospital, nerves I guess. Arrived at the hospital in good time, the receptionist showed us around the ward, there are 3 rooms and 4 bay areas, it is nice because it is so small and not overwhelming. I was lucky enough to be in one of the rooms, with its own plasma TV!

Had a consultation with my Dr going through my lymphoma, chemotherapy and its side effects. I was diagnosed with aggressive Hodgkin's lymphoma IVB - IV meaning the lymphoma has spread through the lymphatic system and is now present in organs and / or bone marrow outside of the lymphatic system and B meaning I am experiencing additional symptoms to a swollen lymph node, such as weight loss, fever or night sweats. Mine is 'quirky' in that it has manifested itself in the abdomen and liver, but the DNA is most definitely that of Hodgkin's. The plan of action is for me to receive 2 cycles of ABVD which is actually 4 treatments (because for some reason, 1 cycle of ABVD = 2 treatments of chemotherapy) and then have a PET scan to see how my lymphoma is responding. If it is responding well I will continue with ABVD if not he has the option to chance my chemotherapy to a German regime called BEACOPP which is more aggressive and the chances of infertility are greater.

My consultant also went through the side effects of ABVD -
  1. Lowered resistance to infection - ABVD can reduce the production of white blood cells by the bone marrow, making you more prone to infection. This effect can begin seven days after treatment has been given, with your resistance to infection usually reaching its lowest point 10–14 days after chemotherapy. Which is why in this period I have to be careful to avoid people with colds and crowed places with recycled air, like the cinema.
  2. Bruising or bleeding - ABVD can reduce the production of platelets (which help the blood to clot).
  3. Anaemia (low number of red blood cells).
  4. Feeling sick (nausea) and being sick (vomiting) - anti sickness tablets can reduce this.
  5. Tiredness - many people feel extremely tired (fatigued) during chemotherapy, particularly towards the end of treatment. This is a very common side effect and it's important to try to get as much rest as you need.
  6. Hair loss - this usually starts 3–4 weeks after the first cycle of treatment. Hair is usually lost completely.
  7. Sore mouth and ulcers - your mouth may become sore or dry, or you may notice small ulcers during treatment. Drinking plenty of fluids and cleaning your teeth regularly and gently with a soft toothbrush can help to reduce the risk of this happening.
  8. Taste changes - you may notice that your food tastes different.
  9. Numbness or tingling in hands or feet - this is due to the effect of vinblastine on nerves and is known as peripheral neuropathy.
  10. Pain at the injection site or along the vein - this can happen while dacarbazine is being given.
  11. Allergic reaction - some people can have an allergic reaction to dacarbazine or bleomycin.
  12. Fevers and chills - this may happen several hours after bleomycin is given, but does not usually last long.
  13. Skin changes - rarely, your skin may darken. If it does, it usually goes back to normal a few months after treatment has finished. Bleomycin can cause a rash that may be itchy and your doctor can prescribe medicine to help with this.
  14. During treatment, and for several months afterwards, you will be more sensitive to the sun and your skin may burn more easily.
  15. Changes in nails - your nails may become darker and white lines may appear on them. These changes usually grow out over a few months once the treatment has finished.
  16. Changes in the way your heart works - this is very rare with usual doses of doxorubicin, but may occasionally happen when high doses are used.
  17. Changes to the lungs Bleomycin can cause serious lung problems. This can happen during treatment or after it has finished. This is more likely to happen if you smoke.

Once we had gone through that little lot the Dr explained that he wanted to do a bone marrow biopsy - at the mention of that Dad made a swift exit. Oh no I thought, this was the one procedure I thought I had avoided as last time my consultant had said he didn't want to do one and now he wanted to do one there and then!!! To be fair it wasn't as bad as I had imagined as he completely numbed the area and the discomfort didn't last more than 5 seconds, I know because he made me count!

Will that out the way I was given my pre-chemotherapy drugs, steroids and anti sickness tablets and left to eat my lunch. After lunch chemotherapy started. There are 4 drugs in ABVD (doxorubicin originally adriamycin, bleomycin, vinblastine and dacarbazine ). First the nurse put in a cannula and to that attached a saline drip. Then into the same cannula she injected 2 of the drugs via slow injection, which all in all took about 45 minutes, completely painless and she sat and chatted while she administered it. She was a lovely lady and made me feel as at ease as possible. The last 2 drugs were given in a drip form, one over 15 minutes and the last over 2 hours. The last drug was a little uncomfortable going through my veins, this was eased with a heat pack over my arm.

Towards the end of the 2 hours I started to get the shakes and feel cold. The nurses thought it was a reaction to bleomycin, my temperature was also up, so I was prescribed more steroids which she said would have me climbing the walls later!

After the chemo had finished I was attached back up to a saline drip, which I was to be on all night. They call the first treatment the hit hard treatment, where they hope that the tumours start to break down and therefore toxins are removed, because of my enlarged liver they weren’t sure how my liver was going to react so they wanted to keep me in overnight to flush my system through with fluid and check the function of my liver and kidneys.

At around 5pm I was taken down to the ward in a wheelchair, I have to say I didn’t protest. I was taken down to my room. It was all very nice to be in my own room but it was in the old part of the hospital and it throw me a bit, that I would be staying here on my own tonight, you felt a bit alone, not like on the ward where stuff is constantly going on and the nurses can see you all the time, I felt a bit vulnerable.

No sooner had I settled in I was given yet more drugs and then dinner arrived. I don’t know whether it was the stress of the day or the steroids but I had a good go at all 3 courses! Didn't get much sleep partly because of the steroids and partly because of the machine the drip was in, making noises and I was up and down to the toilet because I was having so much fluid, bearing in mind it is no easy task when attached to a drip and you have to wheel your machine in with you! Was discharged the next morning.

ABVD Cycle 1, Day 1 - DONE!

Saturday, 7 February 2009

Waiting for Chemo to Begin

The consultant had said that whatever type of lymphoma it was found I had, chemotherapy would start next week.

The days in between the first consultation and first chemotherapy session have been spent gathering as much information as possible and trying to read as much as possible in order to get my head around it all. The lymphoma association are a really good source of information.

The other battle going on is trying to keep my temperature under control, every night without fail I suffer high temperatures, ironic as it is one of the coldest February's outside and snow is on the ground. The temperatures seem to hit around dinner time and as a result I have no appetite and usually pass on dinner. Cold flannels, cold baths, ice creams nothing seemed to work! What with the temperatures and itchy skin I am finding it difficult to sleep at night and that is meaning I am sleeping more in the day.

Since my meeting with the consultant I have started having Clexane injections everyday to thin my blood because there is a risk the tumours can cause blood clots, which they obviously want to avoid. My consultant thought I could do them myself but I opted for a district nurse to come and give them to me. When the GP surgery is open I will go down there to have them everyday and on the weekends a district nurse will come to give them to me. There is a variety of techniques in giving them, I thought Mel described it well in her book, there is the dart player or the dancer (the nurse either stabs it in or punctures the skin slowly) and the firm squeeze or the gentle squeeze of the skin. They are unpleasant as they have to be given them in your stomach and the Clexane stings.

My consultant rang on Friday evening to say that the pathologist had got back to him and my Lymphoma was Hodgkin's which is what we wanted, he said I would start ABVD chemotherapy on Tuesday. Sally and Verity came to visit at the weekend which took my mind of worrying so much. Next week is the start of me getting better.

Wednesday, 4 February 2009

Unanswered Questions and More Waiting

Wednesday was the day I was to meet my consultant. Had the last appointment of the day so the morning was spent trying to keep busy. All too soon it was 3pm and we were leaving for the hospital. Had my bloods taken before I met my consultant, obviously by an amateur because my arm went blue he was taking so long!

After another bit of waiting I met my consultant. It was explained that I did have lymphoma which is a type of cancer that originates in lymphocytes of the immune system. Lymphoma is cancer of the lymphatic system. The lymphatic system is made up of a series of vessels and glands, known as lymph nodes. These are spread throughout your body, much like your blood vessels. The lymphatic system is part of your immune system. It carries lymph around your body. Lymph is a fluid full of infection-fighting white blood cells known as lymphocytes.

When a person has lymphoma, some of their lymphocytes are 'out of control'. They divide in an abnormal way, or do not die off when they should. These abnormal lymphocytes can collect in the lymph nodes, which then enlarge as the lymphocytes form tumours. Lymphoma can also affect other organs in the body such as the liver, as in my case. The affected lymphocytes begin to lose their infection-fighting properties, making you more vulnerable to infection. The causes of lymphoma are still unknown.

There are two main types of lymphoma:
i) Hodgkin lymphoma - if the Reed-Sternberg cell is seen under the microscope. Hodgkin lymphoma can occur at any age, although most people diagnosed are between the ages of 15 and 35 or 55 and over. Around 1500 people are diagnosed with Hodgkin lymphoma each year in the UK. Hodgkin lymphoma affects more men than women. Hodgkin lymphoma is now very successfully treated, and the majority of people with it will be completely cured.
ii) Non Hodgkin lymphoma - any lymphoma that is not Hodgkin lymphoma. Around 9500 cases of non-Hodgkin lymphoma are diagnosed each year in the UK. It is more common in those aged over 55, and is one of the most common cancers in those aged 75 and over. There are many different types of non-Hodgkin lymphoma. Some types grow very slowly and others grow very quickly.

The pathologist had been unable to identify my type of lymphoma, but he had narrowed it down to two types, one being Hodgkin's and one being non Hodgkin's. Alarm bells then started ringing because I had read that non Hodgkin's lymphoma is less curable. My consultant explained that depending on what type of lymphoma I had, would determine the type of chemotherapy I had.

My consultant explained that whatever type of cancer I have it was fast growing and aggressive due to the masses evident on my scans, which I was allowed to look at. At the bottom of my scans it said suspected grade IV lymphoma, there it was in black and white, grade IV is as high as it goes. He didn't think I had had the cancer all that long, probably dating back to the end of my travelling trip, October/November time. We discussed the severity of the situation, the fact of it being cancer, and with that there are no guarantees but he did say that usually with these fast growing aggressive types they respond well to chemotherapy. Discussed the option of freezing my eggs, but he said that we didn't really have time, he said it was a gamble but if the lymphoma turned out to be Hodgkin's the type of chemo I would be having had a good rate of fertility with it. We also discussed the option of going privately and the next steps.

Had an examination and the doctor noted my extended abdomen which he suspected was because of the liver being full of lymphoma. He looked at my sores and scars on my feet from my itchy skin, which is a symptom of lymphoma and one he said would soon diminish with chemotherapy. Also went through my other symptoms - the night sweats, at around evening time everyday I would become uncomfortable hot and my temperature would rise to very high levels, back pain - which I was know taking pain killers for, me said he would leave me on them for now but want to take me off them, he suspected the back pain was due to my extended liver pressing on nerves, tiredness - another 'normal' symptom of lymphoma.

Came away feeling disappointed that I still didn't know what type of lymphoma I had and would have to wait for these results before I could get my head around what chemo I would be having and with that we still had lots of unanswered questions because many of them related to chemotherapy and the answers are chemo specific. Draining day, physically and emotionally.