Irinotecan Cycle 1, day 8

Christmas was very pleasant. It was lunch at my sister's house and we had the usual turkey and ham. Cold, not hot, which was just as well as the temperature got up to nearly 40 degrees (Celsius, not Fahrenheit, so it was really HOT). I managed a small amount of ceviche, which is the traditional family starter for celebratory occasions, a minute amount of ham and turkey, but quite a pile of salad and pickled vegetables, then a small slice of frozen Christmas pudding.

That was the last time I had an appetite.

I am feeling rotten. I am so tired that I am sleeping the clock around, getting up and then going back to bed. I have stomach cramps and minor diarrhea. I am nauseated at the smell of food and cannot eat anything after breakfast, so Sustagen is my major food source. I just hope I start feeling better soon - I think these are the worst side effects I have ever had from chemo. My next appointment with the oncologist is not until January 12th, and I will be seeing a locum because the usual doctor is taking his annual leave.

No news is good news?

I haven't been blogging because there has been nothing much happening. I have diarrhea again and it is knocking me around. I get up in the morning, have a shower and go back to bed again for an hour or so. Each time I have a bowel episode I have to have another lie down - it is a pain to be so weak and tired. It is not helped by lack of appetite - I have again lost the desire to eat.

I have been visiting a Chinese doctor who employs laser acupuncture and my shoulder is almost pain free. I went to him today and he treated the constant "stuffed head" I have had for a while. He ascribes it to pinched nerves - certainly he managed to find some very painful points in my neck. I am going back in a fortnight.

I have a PICC line dressing on Friday, then the following week I will be having the new chemo. It doesn't sound like fun, according to what I have read, but every drug is different, and I may just be able to handle this one better than Folfox6 or Xeloda. I am keeping my fingers crossed that the side effects this first time will be minimal - I want to feel well for the wedding.

Martin is out of hospital, but still has a catheter and a pump for IV antibiotics. He gets a daily visit from a nurse who changes the IV bag - he has been taught how to handle the catheter himself. Yesterday we took him to the hospital where he had more blood tests and it seems there may be a problem with his kidneys. We can only wait and see.

Struggling

Don't read this post if you are put off by sordid details!

It is difficult to be positive when you feel so horrible. I have had dreadful diarrhea for the last few days, plus I am throwing up without warning. No feelings of nausea, just a sudden upchuck. Last night I threw up immediately I had finished my meal (strawberries and icecream) and swallowed my first Xeloda. I waited a bit, then took the three tablets. Kept them down, then had a nasty accident from the other end when I got up to go to bed. Cleaned that up, took a Gastrostop, then threw up again. It was more than an hour since the Xeloda, so that should have dissolved.

I am sleeping lots, so I should start feeling better soon, I hope. However, the foot-hand syndrome has started again - much earlier this cycle than in the past. Lots of cream on my feet seems to be helping.

Cycle 5 Xeloda

There was a bit of good news yesterday - the CEA marker has dropped from 4400 to 3500. So I had my infusion of Oxaliplatin and Avastin and started the Xeloda again this morning.

I am having a bad time with the Oxaliplatin side effects. I have pins and needles in both my hands and up my right arm (which was the one the cannula was in) plus in the calves of both legs. These are bearable, but I am also having difficulty swallowing any liquid at all that is not at least body temperature. Any colder and my throat closes up and I find it difficult to breathe. Scary! Also a bit of a problem when it comes to trying to replenish fluids - I still have diarrhea. Have had several cups of tea - can't take warm water unflavoured. Nose drip is worse than usual, too.

I had appointments today for some more Bowen therapy for my shoulder and for another hypnotherapy session. I cancelled the Bowen therapy one because I felt so unwell, and then the hypnotherapist rang and cancelled his session. Can't say I was sorry about that.

Hanging in there

just! The last three days have been pretty awful - I have been vomiting as soon as I get up, despite taking a Pramin. Couple that with diarrhea and the less said about the morning visit to the bathroom, the better.

I managed to get the quilt top finished and delivered it to the professional quilter on Friday morning, so that is one out of the way. I have three left to finish - one was almost done when I lost interest some years ago and really only needs 3-4 hours work. Another is all sandwiched and ready to go, while I plan to use my computer machine for the third one. I am hoping I will feel more energetic next week when I am off the Xeloda.

On Thursday I went and got a haircut. While my hair got really thin for a while, it has started to grow again, so I was looking a bit like Einstein - all wispy bits sticking out. Now it is all the same length and looks much better.

I have an appointment with a psychologist who also does hypnotherapy this coming Tuesday. I am hoping that he may be able to help with my complete aversion to food. I don't even need to smell or taste it at the moment - just the thought of eating makes me gag. Even my morning porridge and fruit is getting harder and harder to force down.

Only five more days before this round of Xeloda is done with, then a six day break before the next visit to the oncologist.

Not doing too well

I am having a really bad time with side effects this round. The tingling from the Oxaliplatin remains in my forearm as well as the usual finger tingling, I have constant diarrhea despite medication, I am cold all the time and I can't eat anything except porridge in the morning. The rest of the day I have smoothies and protein drinks. At least I am not vomiting!

Because I am not eating I am really tired and don't feel like doing much at all. I have spent most of the day sleeping and am feeling a bit better now, so I am going into my sewing room where I hope to finish off a quilt top that I started in 1996! Time it was off my hands. I plan to have it professionally quilted - I doubt I could cope with wrestling it through the machine.

Back on Chemo

We had a 10 am appointment with the oncologist and he reviewed the last week. He has looked at the scan and says the disease is still stable. The enlargement of the lung tumours is minute, and he is not worried about that. However, the CEA marker went up again to 4400 - twice what it was 2 weeks ago, so the Avastin alone is not doing enough to stop tumour activity. So I am back on the heavy stuff - Avastin, Xeloda and Oxaliplatin.

I start Xeloda tomorrow, but I had an infusion of the other two drugs with an early bad reaction to the Oxaliplatin. My hand hurt around the cannula and I had pain and pins and needles in my lower arm which extended up into my shoulder. Two hours now since the infusion stopped, but my arm is still bothering me and the mouth and finger tingling in response to cold is back to full strength. I'm glad I had icecream for lunch - guess it will be a while before I can eat it again.

I am not really looking forward to the next fortnight with Xeloda. Wish me luck and no side effects.

Still not eating

I went to the GP this morning to get my regular prescriptions rewritten. She was also concerned about my weight loss, though she didn't have any suggestions on coping with inability to eat that I haven't already tried. She did say that eating what I could, when I could, was the best that I could do at the moment.

She took my blood pressure and it was quite low, so she has taken me off one medication and wants to evaluate the other in three weeks or so. She also did a blood sugar test and it is a bit high. Now I could have diabetes to worry about as well!

I am to have my CT scan tomorrow morning at 10.45 am, and I am not allowed to have anything but water for six hours prior, so my usual calorie loading won't happen tomorrow morning. I just hope I will be able to eat afterwards to make up for it. Plus, of course, I am hoping for some good results to justify the struggle I am having with chemo's side effects.

I didn't get my red car

but I got these from the dealership as a small consolation.

We decided that we really wanted a Ford Fiesta with all its features, and since a six month wait for a red automatic is not really a viable option, we opted for a silver one. We picked it up yesterday afternoon. I haven't really played with all its features, but I am totally wrapt in the Bluetooth connection to my mobile phone. No more pulling off the road to answer a call.

The hand-foot syndrome has improved enormously - I no longer have any pain in walking - but I am keeping up with applying the cream. I have had no appetite for the past two days,but have had some soup and fruit. I hope my appetite will improve as my Xeloda holiday continues.

A grotty couple of days

Wednesday my feet were so painful that walking was almost an impossibility. I decided not to take my morning dose of Xeloda. I rang the oncologist's surgery and the nurse-receptionist said that it was the best thing to do and she would tell the doctor. She rang back later and said the oncologist would ring me later in the evening. So I rested my feet until it was time to go to Haddon's funeral. It was a brief, but moving, ceremony. I wrote the basic eulogy, but our friend Dennis found many more anecdotes to relate. Afterwards we went back to Haddon and Margaret's house where I spent a couple of hours sitting down. I managed one drink, but was unable to eat anything.

After the doctor's call in the evening, when he said that I had done the right thing in stopping the Xeloda and that three days without it wouldn't make a difference and that I could expect an improvement in my feet in two to three days (all of which was a great relief to me) I went to bed without eating any dinner.

Thursday morning I vomited shortly after I got up - first time in a long time - but managed half a bowl of porridge for breakfast. Then it was off to the oral surgeon for the removal of the decayed wisdom tooth. It was done under local anaesthetic and went well. There was no bleeding, so I haven't had to use the special mouthwash. But I felt so unwell afterwards that I went to bed without any lunch for the afternoon. I slept till nearly five, when Kevin got me up because he thought I wouldn't sleep at night. I didn't feel able to eat any dinner and vomited again, but drank a glass of Sustagen about an hour later before going off to bed again.

I slept well, but vomited again in the morning. Breakfast was a couple of spoonfuls of tinned fruit. I had another session of Bowen therapy this morning. The last one certainly helped my hip/leg pain, so she concentrated today on my shoulder. It felt good by the end of the session, but it did last time too. We will see how it goes - I have another appointment next Friday morning.

When I got home there was a letter of appointment for my next CT scan. It is not till August 3rd, so I will be seeing the oncologist before it happens and we won't have any information on how effective the Xeloda has been with the tumours. Disappointing.

Haddon has gone

Our friend Haddon died in hospital this morning at 1 am. He has been in hospital for three weeks (actually since the day I fell and hit my head) fighting fluid in his lungs and a urinary tract infection. We went to see him yesterday afternoon, but he was unconscious, so we have to hope he felt our love and concern through holding his hand. Haddon has been a cancer survivor for six years. He had prostate cancer which metastised to his bladder and bones. He has had numerous rounds of both chemo and radiation, but has managed an annual trip to Bali. He will be missed, especially by his wife Margaret and by his lifetime friends like Kevin who has known him since he himself was 13, nearly 60 years.

I hope I last as long.

The soreness on the outer soles of my feet is still there, but I am getting relief by frequent application of moisturing lotions and creams. The chemist gave us a range of samples to try. I recognise one - Aveena - from various web postings, but it is a lotion and a bit runny. The best one to date is one called QV which is a cream. I have also found that I have one pair of shoes - soft leather which I have had for at least ten years and which unfortunately are almost ready for the scrap heap - which are really comfortable, even more so than the sheepskin slippers. I put on the cream, then socks and shoes and my feet are comfortable all day.

The Bowan therapy seems to have made some improvement of my leg pain. Yesterday I was able to walk quite a long distance from the carpark to the hospital, and then back again,though not without some pain. There is no improvement in my shoulder. I am to have another session on Friday. Also next week I will have my decaying wisdom tooth removed, which should help in reducing mouth infections.

Side Effects

This round of chemo is making me very tired and combined with the leg/hip and shoulder pain that I have had for a couple of months now I am not at all inclined to exercise. I also think that I may be developing foot-hand syndrome as the edges of my heels are very tender and sore. I have been rubbing in a cream that I have found effective with dry hands and it relieves the soreness for a while. I am finding my sheepskin slippers to be the most comfortable footwear.

Tomorrow I am visiting a Bowen therapist. This was recommended by my GP as a possible way to relieve the shoulder and leg pain. Bowen therapy is a form of physiotherapy, but does not involve intensive massage and manipulation. Several of my friends have had Bowen therapy for a range of problems to do with bones and muscles and all agree that the therapy worked well for them.

So I hope to have a positive report tomorrow. I don't know what I am going to wear on my feet though - sheepskin slippers are not a good look!

Xeloda Cycle 3 starts tomorrow

My blood counts were fine and the liver function markers are normal, so I start Xeloda again tomorrow morning. However the CEA is up again slightly, so that is a bit of a worry. We had a look at the full report of the last CT scan. One large liver tumour has shrunk slightly, but the rest are unchanged. One of the "foci" in my lung has enlarged slightly, but it is still unclear whether I actually have tumours in the lungs.

I am to have another scan in a couple of weeks. The scans are supposed to be every 2 months, but the last one was 3 months after the previous one, so the oncologist has brought the next one forward.

I had an infusion of Avastin after my appointment. I don't usually have problems with this drug, but today I felt very cold about halfway through. I was glad I had brought a wrap. Then this evening I have had a nasty dizzy spell. Just as well I was seated at the computer or I might have fallen and ended up in emergency again!

Dara and Bernie have suggested my diarrhea may be due to dairy foods and that it might be a good idea to eliminate them from my diet. The only problem is that dairy and vegetables are the only foods I can tolerate from the taste aspect. Meat is disgusting. So I am not sure what to do.

What a week!

This has been a pretty eventful week.

Monday I went to the GP who took careful note of my aching shoulders and legs symptoms and thought I might have fibromyalgia rheumatica. This can be determined by a blood test, so off I went to have one with another appointment organised for Tuesday.

Tuesday morning I put in my contact lenses as usual, then inserted the drops I use every morning to correct dry eye. Instant agony in my right eye. OK, remove the lens, wash out the eye, wait a bit and reinsert. Done it a hundred times. But not this time. The lens was stuck to the cornea and I couldn't get it out. Eventually, after much bathing with saline, I managed to remove it, but it was still very painful. Once it was office hours I phoned my optometrist who recommended some other drops and bathing, and to get the doctor to look at the cornea when I went to see her. I had to get Kevin to drive me - my glasses are not good enough for driving. The doctor said I had damaged the cornea and needed to spend at least another 24 hours without lenses. And the blood test showed I didn't have FMR, but I did have a slightly high thyroid reading (which opens another whole can of worms). She admitted that she didn't have any idea what the problem was at the moment, but recommended a visit to a physical therapist, an increase in exercise if I could manage it and another blood test (not urgent) to check out my thyroid.

Wednesday morning I was energetic enough to do some housework, then I went to the fortnightly meeting of one of my sewing groups, driven there by a friend. A good day, even if I was unable to eat much of dinner.

Yesterday morning I put in my lenses without a problem. Wonderful! I went and did the grocery shopping to celebrate being able to drive again. I didn't feel like eating much lunch, but found I quite enjoyed an apple sliced with some ricotta cheese.

In the afternoon Kevin took a friend to see his GP. Haddon has prostate cancer which spread to his bladder and bones, and he has been feeling really unwell lately - too unwell to drive. Since he usually has to wait for his doctor to see him, Kevin left Haddon and his wife and went to see another friend. He took his mobile phone, but left it in the car. (Be patient - this is a pertinent fact). At home in the meantime I had decided to do some clearing out of excess clothing. As I reached under the chest of drawers for some unwanted shoes I overbalanced, landed on my backside and fell backwards, hitting my head on the wall. While I didn't blackout, I was dizzy and had a bit of blurred vision. A huge egg popped up immediately on my skull and I had a bad headache.

I went to the phone and tried to ring Kevin. No answer. Then the phone rang. The doctor had been prompt and Haddon and Margaret were ready to be picked up. I rang Kevin again. No answer, so I rang the friend he had gone to visit and he was still there. I sent him off to pick up H & M, then to come home.

While I was waiting I decided to ring HealthDirect - a government telephone service which advises people about their options if they are worried about some illness or injury. It is mostly used by the parents of young children (wish it had existed when our kids were small) but caters for all age groups. The nurse on the end of the line wasn't too concerned until I mentioned my daily shot of Clexane in the list of medications. Because of this, there could be the possibility of bleeding in the brain from a blow like the one I had given myself, so she recommended I attend an emergency department at a hospital for tests.

So off to Murdoch we went, prudently packing an overnight bag just in case. Murdoch is a private hospital, so there is a hefty fee to pay, but there was almost no waiting to be admitted (unlike previous experiences with public hospitals). I still had a whopping headache, despite taking some Panadol over an hour before, so the doctor prescribed an IV painkiller and antinausea drug, and a CT scan of my skull. After 4 hours they decided there was nothing seriously wrong and we were released. In the meantime Haddon had also arrived at emergency to await admission for a blood transfusion and draining fluid from his lungs, so Kevin had someone to talk to while I had my scan. When we got home I managed a few mouthfuls of food so I could take my evening dose of Xeloda and went to bed almost at once.

I have been very tired today. Perth is suffering a cold snap - it was zero degrees Celsius in some parts of the metropolitan area this morning - so I have spent most of the day wrapped in a rug and dozing in front of the heater. I vomited this afternoon - the first such episode since my initial cycle of chemo, but I am feeling OK now. Early to bed I think.

Aching all over

My legs, arms and shoulders have been hurting for about a fortnight now. When I asked the oncologist if this was an expected side effect he said he had not encountered it before. So I am going to see the GP tomorrow - she may have some suggestions on dealing with it.

It has been bad the last couple of days - I have been feeling weak and unable to walk far. The pain is not really bad - in fact, it is comparable to that you experience when you have over-exerted muscles with unaccustomed exercise, but it is definitely not due to that. Exercise has not been a component of my daily life since I began to feel unwell about November last year. Maybe I need to start again, but it is not appealing while I am hurting so much.

A visit to the dentist

This morning the infection in my mouth (not an ulcer - the skin was red and swollen, but unbroken) was so painful I couldn't open my mouth very wide or chew and I had referred pain in my ear. I had yoghurt for breakfast - no chewing required, and no solid bits to lodge in my teeth to be dislodged by painful brushing.

I decided to ring the dentist to see if there was a vacant slot I could take and there was! The appointment was for 1.30 pm and in the meantime I did lots of warm salt water rinsing, with the result that when I finally saw the dentist I felt a bit of a fraud because it was no longer so painful. However, he thought it was serious enough to send me downstairs to the radiology clinic to have an X-ray taken of my entire set of choppers.

The X-ray was only slightly more comfortable than a mammogram. You stand with your teeth clamped on a protruding plastic piece (covered in plastic film, fortunately), with your head clamped on either side. You are required to take a step forward, then lean back at an angle, holding on to two handles for support. You have to maintain this position without moving for 25 seconds - which seems like a lifetime. I did move while the first picture was taken, so the entire procedure had to be repeated. Fortunately the second take was OK.

Back at the dentist's rooms he decided that the picture wasn't quite clear enough, so he did two more X-rays. These were the dentist type, where the plate is inserted into your mouth and everyone but you skedaddles out of range while the picture is taken. This was quite a painful procedure, what with having to open the mouth wide and the plate pressing on my swollen and painful gum.

And the result? The tooth where the infection is is my one and only remaining wisdom tooth. It sits up against the jaw hinge which makes it hard to clean properly and is no longer sound (dentist talk for rotting?). It will be the source of probably many more infections, so it needs to be removed. I am to make an appointment with an oral surgeon. The problem of course, is chemotherapy, so I have to consult with my oncologist first, which is 10 days from now. Plus there is an infected area on the roots of one of my other teeth which may also cause problems, though it is fine at the moment.

So more warm salt water rinsing. If the infected area doesn't clear up in three days I am to fill the script for antibiotics which I have from my last dentist visit. Oh joy!

Despite the fact that I had no appetite today for breakfast and lunch, I decided to make a pot of French Onion Soup. We had it for dinner tonight, complete with cheese covered bread that had been placed on top and cooked in the oven. It was yummy (once it cooled down) - the first thing I have really enjoyed for days. I hope this is the sign of better things to come.

Upsetting TV ads

If there is a prize for insensitivity it would have to be awarded to Channel 7 Perth.

Last night at about 7.05 pm, the channel aired a moving ad from HBF (health insurance) which featured a woman dying of cancer. It was immediately followed by an ad for Mareena Purslowe and Associates, Funeral Directors. This confronting combination made me burst into tears. I am still upset thinking about it.

I have made a formal complaint to the TV regulatory authority.

It was hardly tactful, either, given that this week is Bowel Cancer Awareness Week here in Australia.

I felt much better yesterday, but today is another not so good day. I am still nauseous (I took a Pramin first thing, but it is having little effect) though I managed a half slice of toast with stewed tomatoes for breakfast. And I am visiting the loo with depressing frequency.

Food, taste and energy

I have had quite a bit of energy today - enough to drive twice to the Hyundai agents to take and then pick up our car which was having replacement sun visors installed. This was a recall job, so no cost. We also went (with Kevin driving) to Murdoch hospital for my blood test, then to visit another car sales place to try and find out more about a car that won't be released her in WA till July, but which I think I want. I am being quite open about my bucket list - if I want it and we can afford it (either money or time) we'll get it. I also cut out the pieces for a bag I am going to make.

I had enough energy to cook two meals today - fried rice for lunch and sweet and sour for dinner. It was supposed to be sweet and sour pork, but when I got the meat out of the fridge it was actually veal, so that is what I cooked. I think I will have to become a vegetarian - I am finding that I just can't cope with meat. Either it is completely tasteless or else it tastes unpleasant. It was the latter tonight. But I can manage vegetables, even when I have no taste at all. I do have some at the moment. Tonight's sweet and sour sauce was yummy - carrot, green capsicum, mushrooms, onion and cucumber as a base and lots of goodies in the sauce.

I find out tomorrow whether I will start the Xeloda. I have been reading about it - it sounds as if there are are some nasty side effects. I WILL pay lots of attention to my hands and feet.

Nearly time for the next treatment

Tomorrow I am to have the blood test that always precedes my visit to the oncologist and any subsequent chemotherapy. I hope it will be OK and that I will be able to resume treatment. I have had a month without any major chemo.

Last week my white blood cell count was too low for me to have the Xeloda I was supposed to start, though I did get a small dose of Avastin. I had had diarrhea pretty constantly for the previous three weeks. It has cleared up this week - I have had three full days with normal bowel movements. I hope this signals a general improvement, including the bone marrow.

Wednesday is the day I will find out. I also expect a booking for my next CT scan will be made. I can't wait to find out what is happening with those suckers in my liver and lungs.

BAD Hands

I have had really bad tingling in my hands today - so intense that it was painful to use my fingers for anything - not just cold things. Not to mention that they were clumsy and I found it hard to use any tools - except a spoon for my breakfast cereal. It lasted till noon, but is getting better now.

We are leaving for Queensland tomorrow and I have a long list of things to do. One of them was to clear out the vegie drawer in the fridge. The vegetables would not be too great 9 days from now. Despite the problems with my hands I have done it.

I cooked up some leek and potato soup which we have eaten part of for lunch, a HUGE mixed mixed vegetable and barley soup and a tomato and onion sauce. I am waiting for them to cool down so I can package them in plastic storage containers for freezing. There are also some roasted pumpkin pieces in the oven. I was going to make a soup from them too, but I will just freeze them as they are. They can become a soup some time in the future. I feel so virtuous that I didn't just dump all the vegetables in the compost tumbler - there were a lot of peelings and bad bits that did end up there.

Now I have to tackle the packing, though that isn't too urgent. We don't leave till 11 am tomorrow.