Chemo delayed

I was supposed to have a dose of irinotecan today, but when we went to see the oncologist he offered me a choice. I NEED to start chemo again soon or the gains from the SIRT will not continue (my CEA has dropped from 9000 to 7000). However the doctor agreed that the side effects from irinotecan are as bad as I had read and that in two weeks' time I was likely to be suffering from diarrhea and nausea as well as possible hair loss. I could have a small dose today and have some side effects, or wait till after the wedding and have a massive dose after.

I know Kevin wanted me to do the chemo, but I really want to feel as well as possible for the wedding. It may shorten my life, but I will be smiling on the day and hopefully not worrying about toilet breaks and throwing up. I will not experience our daughter's wedding again - it is worth anything to be able to enjoy the day.

The wedding is on the Saturday 18th - I have my dose of irinotecan on Monday 20th. I might even be able to enjoy Christmas lunch if the side effects don't kick in too quick. Today I had my PICC line dressed and organised for the next two dressings before the chemo.

Martin seems to be doing OK, though he still has daily dressings of his IV antibiotic. He is going to stay with us the night before the wedding - much less hassle.

Chemo again

The 5-FU flush was OK this morning - it took longer for the antinausea drug infusion and the line flush than the actual chemo. I have been feeling slightly nauseous all day, even before the chemo, and when I told the nurse she said it was almost certainly psychosomatic, given that I have had very little nausea in the past weeks.

In any case, I have had to take a Pramin this afternoon.

I have made a big pot of minestrone (I don't think it's possible to make a small one) for dinner tonight. I have to fast from midnight and be at the hospital at 7 am. I hope the nausea doesn't happen tomorrow morning, because I'm not supposed to even take a sip of water.

We went to visit Martin after my chemo. He seemed a bit more settled than he was on Monday, but is still complaining of pain. His abdomen is still very distended and he is still having trouble with his bowels and his urination. Helen is going to see him after school tomorrow, and I/we will visit him on Saturday - I don't think I could manage it Friday after both radio and chemo therapy.

Radiotherapy ready to go

We went to the specialist in charge of the SIRT therapy today. He went into much more detail than the oncologist did about the tests I had a couple of weeks ago, but reiterated that I was a good candidate for the treatment, because in the test few of the spheres went where they shouldn't have gone.

The fact that my hepatic artery has two branches means that they will have to insert a titanium spiral in the unwanted branch. This will cause a clot so the spheres can't enter, but the clot will eventually dissolve, leaving $250 worth of titanium there. He is very hopeful that the therapy will have a good result. I have to have a dose of 5-FU next Wednesday, go into hospital for the SIRT therapy on Thursday, stay overnight and then have another dose of 5-FU on Friday.

I am not looking forward to resuming chemo. I have enjoyed having what resembles a normal appetite, though I still cannot eat very large amounts. Tonight I cooked fish in foil with halved cherry tomatoes, thinly sliced onion and lemon, garlic and parsley. We had lettuce and chopped green capsicum and a dob of guacamole with it - very nice indeed.

Monday we drove down to Denmark, a town in the south of the State about four and a half hours from Perth and returned yesterday. You can get more details from the family blog. My feet are a bit swollen today - probably due to sitting so long, though I did wear compression stockings (not TEDS, though). So I am still doing really well overall. I have a CT scan tomorrow, a PICC dressing on Friday and another blood test on Saturday. Busy, busy.

I'm on holiday

from chemo for the next couple of weeks. I am booked in for the SIRT treatment on November 11 (the tests were fine, hooray!) and have to have a short infusion of 5- fluorouracil the day before and another the day after. This apparently helps the radiation to be more effective. Then I will have another break for a month before starting another different chemo drug: Irinotecan. Unfortunately that will be about a week before our daughter's wedding, so I will keep my fingers crossed I avoid the worst of the side effects: diarrhea, nausea and vomiting, loss of appetite and low blood cell counts.

During my present chemo holiday I have to have another CT scan. If I didn't already have cancer, I might be starting to get concerned about all the radiation from these!

I am still feeling really good. My appetite is much better and my weight has stabilised. We bought Subway rolls for our lunch today (only 6 inch ones - neither of us would be able to cope with a foot-log Sub at any time!) I had tuna and a pile of salad in mine and managed to eat more than three quarters of it. I am still unable to eat meat - even chicken is unappetising most of the time - but I seem to be able to cope with fish and seafood. Last night I made Egg Foo Yung with prawns and there was enough left over for us to finish them off tonight.

New Treatment

We visited the oncologist today. He seemed pleased with the overall improvement in my health. He has made an appointment with another specialist regarding the possibility of SIRT (Selective Internal Radio Therapy) treatment. This will be next Tuesday. If I am suitable for this treatment it will happen in about three weeks and I will also have some chemotherapy with a drug I haven't had before on the day before and the day after. In the meantime I have a chemo holiday - hooray!

I am feeling well and can eat quite well. I am having Sustagen between meals to keep up the calories, even though I don't want to put on too much weight. So far I seem to have gained a kilo, though my weight fluctuates from day to day. I have reasonable energy levels too. I went to the meeting of the Contemporary Quilt Group this morning before we went to the hospital. I am rather tired now, so I will go to bed straight after "Collectors" at 8pm. I want to go to the Designing Women meeting in the morning - it is the last one before the exhibition in November.

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.

Disappointment

The visit to the oncologist today was disappointing. The results of the CT scan I had on Wednesday hadn't reached him, so we had an extra half hour wait while he contacted a colleague at RPH who looked at the scan for him. The result? No change in the tumours. The disease is "stable". At least it hasn't progressed, but I was hoping for something a bit more positive. He has decided that I need to have another scan in six weeks time.

I had an infusion of Avastin and I am to resume Xeloda tomorrow at a slightly lower dosage, so we will see how I cope this time around. He gave me the go ahead to talk to an oral surgeon about my wisdom tooth. By the time I have my appointment I will be at approximately the same stage in the cycle as I was when the infection flared up last time. Could be interesting.

My CEA has jumped considerably - up to 2000, but the liver function markers are completely normal and white blood cells and platelets are fine, possibly because I have had almost two week's break from chemo. So while I didn't have the really good news I was hoping for, the overall situation is reasonably OK.

I have been really lax in updating both my blogs.

Since we got back from Queensland I have been feeling really tired and I have had quite a lot of diarrhea. It hasn't stopped me from working on textiles (I got my pieces finished for the Craft Fair) and going to meetings though!

Tomorrow I will have a blood test prior to my oncologist appointment on Wednesday. This will be to establish the Xeloda regime I am due to start. I am assuming I will have the two weeks on, one week off routine, but I haven't been told anything as yet. After the appointment with the oncologist I am to have an infusion of Avastin. This will only take half an hour, so we should be out of the hospital in a couple of hours, rather than the five or six the last chemo treatments took.

Cycle 9 Day 1

Today was the last time I will be having Oxaliplatin, and I am really relieved. The tingling kicked in about 10 minutes into the infusion and is still there. Not quite painful unless I touch something cold, but not comfortable. Plus my lower legs are more tingly than previously.

I had some good news from the oncologist. My liver function is not quite normal, but not a cause for concern. The CEA marker has dropped to 500 from 1100 a fortnight ago. Yay!

I will have a three week holiday break from chemo. When I resume on May 19th I will be having an infusion of Avastin and will be taking Xeloda orally every three weeks. Apparently the side effects to be expected are much the same, except for the tingling and cold sensitivity caused by Oxaliplatin. So nausea, diarrhea, etc are still to be coped with. This regime will be for another 6 months.

Not so good news. The effects of the nerve damage caused by Oxaliplatin will probably take 6 months to resolve. Plus the interdisciplinary committee has decided that surgery for my bowel cancer is not an option at this time. The reason - the numerous metastatic liver tumours are the most serious part of my condition and can only be attacked by chemotherapy. If I were to have surgery, chemo would have to be suspended for 6 to 8 weeks, which could result in a worsening of the liver tumours. I am a bit disappointed - I would have liked to have gotten rid of the primary - but I can see the logic of the decision.

The pump is pushing flouracillin in at the moment. When I get it removed on Friday, the PICC line will also come out. I can hardly wait.

A bit like the curate's egg

Today was good in spots.

There was good news from the CT scan. The liver tumours are shrinking. One which was 2.6 cm in January is now 2 cm and another is now 1.4 cm (it was 1.8 cm). To quote the report "similar reduction in size is seen in a number of lesions within the liver and no new deposits identified". YAY! The lung nodules are unchanged since the last scan, and the oncologist says that this may very well indicate that they are not tumours. I am very hopeful that this is the case.

The tumour indicator from the last blood test on Tuesday showed another reduction. Last cycle it had jumped to 1700, now it is 1100. Still a long way to go, though.

I am to have two more cycles of FOLFOX 6 using the PICC line, which will take me to the end of April. Then the line is going to be removed and I am to have Avastin every three weeks and Flouracillin in tablet form. The Oxyplatin will be suspended for a while since I am having such a strong reaction to it. This means that we do not have to worry about getting the PICC line dressed while we are in Queensland in May. I will be glad to see the end of it - it is both unsightly and uncomfortable as the dressing over it irritates my skin.

The oncologist is also going to confer with the colonorectal surgeon regarding possible removal of the primary cancer in my bowel, but we won't know any more about this till the end of April.

And today's not so good part? While I was booked in at 2.30 pm for the chemo, I didn't get into the chair till 3.45 and the actual infusion did not not start till 4.30. We left the hospital just before 8. So I will still be wearing the pump when we go out to lunch on Friday with sister and brother in law to celebrate my birthday .

Cycle 5

My white blood cells were OK in yesterday's test, so I had my 5th infusion of oxaliplatin, fluorouracil and leucovorin today and am now home with the attached pump feeding in 100ml of fluorouracil over the next 46 hours.

The oncologist wants me to continue on a fortnightly treatment regime so he has lowered the dosages. Apparently I received the maximum doses on the first four cycles and that was a bit too toxic for my white cells. I am quite happy to continue with fortnightly treatments - I want this over and done with ASAP.

A bit of good news - the CEA (tumor marker) continues to fall and is now 1300, compared to 9000 on initial testing. Still a long way to go, but a really good sign that the chemo is doing the cancers some damage.

I am now booked for another CT scan at the end of this month, though I don't know the exact date as yet. I can't wait! Hoping for good news of course, but really want to know if this has been worth while. I will have had my 6th, maybe even my 7th cycle by the time it is done, so I will be more than halfway through the course.

A Family History

This is not the first time we have battled cancer as a family.

Ten years ago Kevin was diagnosed with prostate cancer. He had a radical prostatectomy which was successful in completely removing the cancer, along with his prostate, and no further treatment was required. We both knew the risks from surgery and were prepared for the possibilities of incontinence and impotence. The first healed itself quickly. As for the second: "Dead men don't have erections either " and life is still fulfilling for us both. While he has had the "all clear" for five years now, he still has his PSA checked regularly.

When he was diagnosed, he went on a crusade to persuade all his male friends to have their PSA checked. Even so, one of our friends was diagnosed with prostate cancer which had spread to his bladder. He now also has bone cancer. His operation was successful in removing the prostate cancer, but he is still undergoing chemotherapy for the metastases.

My father developed bowel cancer when he was in his seventies. He had a bowel section and had to wear a colostomy bag for eighteen months, but the cancer was eliminated. He died shortly before his eighty fourth birthday from kidney failure.

One of the things I now regret is that I didn't insist on regular colonoscopies after I turned sixty. The GP had my family history on file, but the suggestion was never made and I didn't want to pursue it.

Kevin is more proactive. He has a colonoscopy every two years. His father, Arthur, also had bowel cancer. By the time it was diagnosed it had spread to his liver and he died within three years in January, 1990. While Arthur had some chemotherapy it was not the organised regimen that is prescribed now, 20 years later. He also had radiation as a last chance therapy, but no treatment succeeded.

I am grateful that treatments for bowel and metastatic liver cancer have progressed so much in the last twenty years that I have a much better chance of a far longer survival than Arthur had. I know my cancers are incurable - I just want to live as long as possible with them doing me as little harm as medical science can provide.

Some good days

The oncologist's receptionist rang yesterday while I was out enjoying the company of my sewing group. Wonderful lady! She has reorganised my appointments so I see the oncologist on Wednesday instead of Tuesday and the chemo will be done after that. So all I need to do on Tuesday is get my blood test which can be done locally. No traffic hassles, no waiting for hours.
Many thanks, Denise.

I am feeling good. My taste is almost normal and the finger and tongue tingling not too bad. My knee is still hurting from last week's tumble and I have to be careful not to bump it, but all is well otherwise. I usually feel pretty good the last two days before chemo - a real bonus to have an extra week.

Taking a Break

The trip to the hospital and our 8.45am appointment with the oncologist took 55 minutes. We didn't go on the freeway all the way - which was almost certainly a big mistake because the other roads were absolutely choked. However we got there just in time and didn't have to wait to be seen.

Yesterday's blood test showed my white blood cells were too low for the Folfox treatment, so that has been delayed for a week to give the bone marrow a bit of a break. However, I had a reduced infusion of Avastin which doesn't attack white blood cells so the trip wasn't a total waste of time.

Next week will be difficult. It is a public holiday on Monday, so no blood test is possible. I will have to go to the pathology collection centre at Subiaco very early on the Tuesday, then see the oncologist 2 hours later. Except that I need food as soon as I get up we could go to a cafe for breakfast. The clinic and ward are fully booked on Tuesday, so I can't have my chemo till Wednesday. I asked if I could see the oncologist on Wednesday, but he doesn't come in until the afternoon, which would be too late for the clinic. Thus, two trips in heavy traffic.

We got a copy of the last CT scan report which has some interesting information. Not only the fact that the liver tumours are decreasing, which we had been told, but also a tentative suggestion that the spots on my lungs might not be cancers, but something else. I will be having another CT scan at the end of March and hope for good news then.

Starting Treatment

We went to see the oncologist at the comprehensive cancer center at St John of God Hospital in Subiaco on Monday afternoon (December 21). He reiterated that chemo was the best way forward, and invited me to take part in a randomised clinical trial. Half the people in the trial get the accepted chemotherapy as the first line of attack while the others get chemo plus SIRT, a form of radiotherapy. Of course I agreed - I wanted the big guns.

Another appointment was made for Tuesday after I had had a blood test and another CT scan. I have described what happened on the other blog. The CT scan showed that in addition to the liver metastases I also have tumours in my lungs as well as some pulmonary embolisms. Not good news.

Wednesday we had a third appointment, this time at Royal Perth Hospital. This was for establishing participation in the clinical trial. The oncologist decided that I will need a daily injection of Clexane for "ever" because of the clots in my lungs and the fact that I have Leiden Factor V in my blood which predisposes me to thromboses. We were given a demonstration of how to administer the injection, a big packet of skin wipes, a Sharps storage bin for the syringes - and a prescription to be filled at our local pharmacy.

I was sent away for another blood test and got a call on my mobile while waiting for it. The computer had done its randomising and I had missed out on the SIRT part - just chemo for me. I was to have 12 cycles, each a fortnight apart. The first one was to be the following Tuesday, December the 29th, with the pump being removed on New Year's Eve.

It all happened so quickly. From diagnosis to confirmation of the diagnosis to the start of treatment was only two weeks. I am not sure whether it would all have happened with the same speed if we had been solely dependent on the public hospital system, but private health insurance meant we had immediate access to hospital treatment without a waiting period. We have been members of the Hospital Benefit Fund of WA since we were married 44 years ago. It is now obvious the premiums were a worthwhile investment. Another major financial assistance is Medicare (Australian Government health insurance) which covers a major portion of the costs incurred outside the hospital, such as the oncologist's fees. Our third benefit is the PBS (Pharmaceutical Benefits Scheme) which in our case, because we are self funded retirees on a limited income, restricts the costs of prescriptions to $5.40 per script or, once we have had 100 scripts filled, no cost at all. I think we will be reaching the safety net for this pretty quickly this year.