Patupilone

Wednesday morning I received the call from clinical trials unit. I have been selected onto Patupilone (the trial medication). Treatment started yesterday with blood tests, ECG, doctor visit and then the walk to the chemo room with my folder. I was home around 2h30pm and rested the whole afternoon and went to bed early. Today I am feeling quite shaky in my body and I am really nauseous. I need to force myself to actually eat anything and that for a lady who never forgets to eat :) . Ian is coming home this weekend to help out with day to day life. He leaves Monday morning again and then comes back for good next Friday. On the renovation side things are also coming to an end. The builder wants to sign off today, the electrician and plumber are done except for the last finishing which they can only do when the kitchen is complete, and kitchen contractor is finishing next Thursday – so all on track to complete by next Friday.

Tide is turning

Finally the tide is turning during this turbulent time. Yesterday morning around 08h15 the oncology clinic phoned me to share that Geneva has approved me on the clinical trials. I am a perfect fit… hehehehe. I will start treatment this coming Thursday and have to wait patiently to hear which arm I have drawn. We all pray and trust that God will give me the medicine that will cure me. About 15 minutes later I called my electrician and he fired me as the customer – I just burst out laughing as I have had my fair share of problems with him and all who know me, know that I have a high level of standard, for myself and other, and if you don’t meet this level I will not be a happy project manager, let alone customer when it is my own money being spent. This morning I already met another electrician on site and he called me later asking if he could start today as his plans for today were cancelled – ironic how all is just meant to be. Now the best news for yesterday – Ian phoned to share that he is coming home from 14 Nov – he has got a transfer to a local Cape Town based location! Blessing I am grateful for!! I can see a glimmer of light shining again.

October2008

The past month has been one of the worst of my life. It is been an emotional and physical rollercoaster ride – the worst of its kind. I understand that smooth roads don’t deliver good drivers, but WOW there is a point of ‘enough for now’. As you know we are renovating our home and Ian is still working out of town, only coming home every second week-end, so it is pretty stressful dealing with the builders, electricians, tilers, painters and plumbers. A different kind of project to manage! Then I also have my commitment to my employer. With the renovations we have been lucky to have access to my brother’s home. My brother works in the UK but has a home just over 1 km from ours, fully furnished and unoccupied. So we have been living here for the past 2 months. Well, beginning October, Colin (my bro) sends down a Labrador puppy (Anouk) which has come to live with all his other dogs and the caretakers. Anouk was not even here for a week when she and Tobi (also a lab) were playing quite roughly and there was an accident whereby Tobi jumped up and landed on her leg. So off to the vet we went where Anouk needed an operation with plates and pin in her right back leg. The following week I had the wonderful news that my tumour counts were rising only to be confirmed as cancer again a few days later. The emotion of having to deal with all these things being thrown at us has been incredible. I will admit that I have been in a very dark pit and as I struggle to get myself out and positive again, I keep feeling the negative pull on the reverse. On top of all of this, Dylan had an accident Monday morning. I was in Johannesburg for the day and had arranged with a friend to collect the boys for school. Sean opened the visitors gate and went out thru it, then Tobi jumped up against the gate locking it. Dylan decided he would jump over the fencing rather than open the gate again. He had one leg on either side of the fence, started moving his back leg to swing it over and his front leg slipped. Causing him to crash land onto the spikes of the fencing. He went to school for an hour after which time he could not walk anymore, so phoned my friend to fetch him. Fortunately her father is out visiting from Oz and he is a medical doctor. He has a look and sent him off to emergency immediately. He has a haematoma on the scrotum. He spent 4 days in hospital as they were concerned an abscess was forming, after x-rays and scopes confirmed no damage to the plumbing. Thank heavens. Dylan is still walking around like the lone ranger with his catheter – hopefully this comes out tomorrow.

Then on Friday I went for all the medical screening for the clinical trials. My logic is that if I go for standard chemo now I will never that the opportunity to try the trials. If I go with the trials then I can reassess in a few months and return to standard chemo, pending the results. The good news is that my blood counts and chemicals are normal, my heart is very strong and normal and my lungs are just fine! The 3 growths are now 5 with a 6th one forming. The biggest grow 12.5mm 3 ½ weeks ago is now 21mm. All my tests have now been sent to Geneva for full screening and I should know by Wed whether I am accepted or not. Either way, Dr L (oncologist) has already processed standard chemo with the medical aid and this has been approved, so next week I will start treatment again.

Operation or not

The docs advise that they can operate but they can only remove what they can see with their physical eyes. The fact that the cancer is growing in various places shows that the cancer is microscopically in the whole abdomen, so an operation would just remove what we see today and then in a few weeks I will have new growths again.

I have finally decided to go for the screening on the clinical trials. This coming Friday I will go for all the interviews, contract signatures and all the medical tests and then I should hear within a week whether I am accepted and what treatment I will receive. I have full faith that God will give me the correct treatment to kill the buggers.

Rediagnosis

The past weeks have just flown by with being kept busy with the home renovations and working again. Monday (29 Sept) I went to have blood drawn to have my tumour marker checked, as planned. By Tuesday afternoon I had had no news so I decided to call the oncology clinic. Dr L was on holiday for the week so the nursing sister returned my call. Tumour marker was at 25.6. That was not the news I wanted to hear. The marker has gone up by more than 10 points, in fact by over 150% and that means there is cancer activity again. I phoned the oncology clinic again and asked whether Dr L would entertain a phone call with me, whilst on holiday but the reply was negative. Wednesday I phoned a very dear friend who is in the oncology industry to verify whether I was overreacting and she confirmed that such a large increase in the marker does indicate cancer activity. I must mention that my tumour marker is still in normal range (0 to 30).

The following Monday morning Dr L phoned me whilst I was driving to work to share that we have a problem and that my appointment with her for the afternoon would be postponed until I had gone for a chest/abdomen and pelvis CT scan. This was arranged for Tuesday (7 Oct) and I saw Dr L later that day. We received confirmation that I have 2nd generation ovarian cancer. There are 3 growths, 2 minor and one more concerning in the lymph gland. At this stage I don’t know much other than that I will need 6 months of chemo, administered monthly. The chemo cocktail will be different and the side effects will be much less debilitating. Dr L says that I will feel shitty for a few days post chemo but will be able to work and travel in the weeks in between chemo. That is all I know so far. I am waiting for the Dr’s to phone me in the next few days to agree the finer details of how we move forward and whether or not they are going to perform surgery to remove the nasty bits.

A few days later….

So, the Docs (trio of three) did contact me. Dr V (gynae) saw me personally without an appointment and before he rushed off to an emergency and told me not to worry about anything – all is still early days and he was surprised that Dr L and I had done the extensive tests we had to date. Dr H (the specialist gynae oncologist) also phoned and said based on verbal conversations with Dr L he was not too worried yet but he wanted to see the CT scans. I duly arranged to drop these off with him and he promised to phone me the next day. Which he did, Friday 11 Oct, with the news that I am definitely 2nd generation ovarian cancer with platinum resistance (in short the first bout of chemo did not kill the buggers!!). The options being presented to me now are either 1. Do nothing, 2, Partake in a clinical trial or 3, the generally accepted medical treatment for this stage to cancer. Ian and I have spent the better part of a week researching the options 2 and 3. The clinical trial is evaluating Caelyx (the standard chemo cocktail for this stage of cancer) vs a new drug called Patupilone. It is an open trial so post screening and acceptance you know which drug you are on. Caelyx has a 28 days cycle vs Patupilone having 21 day cycle. What I like about the clinical trial is that you received a much more intensive follow up and more CT scans so you are fully aware of your state of health. What I don’t like about it is that if I am selected and put on Patupilone then I feel uncomfortable for 3 reasons, being the chemo cycle (every 21 days and based on my previous experience that extra week makes the world of difference in terms of how you feel), the major side affect being severe diarrhoea with chronic doses of cortisone to counter this (can you imagine me sitting in a meeting and missing the loo…. Heaven forbid!! ). The alternate is standard ‘Caelyx’ 2nd line ovarian cancer treatment, with this treatment I may look a bit tanned but Dr H tells me that I have been through the worst chemo experience with my first cocktail (he personally would never take the cocktail…. Bugger him being a male!!)

So where to now….. Clinical trial and I have 50-50 % chance of getting Caelyx or Patupilone plus great follow up….. or Caelyx via my medical scheme……

Post Chemo – First round results

Last Thursday I saw Dr L (Oncologist) with my Ultrasound scans and x-rays in hand. The results on my bloods tests are: Red blood cells, platelets, liver and kidney functioning = Normal. Neutrophils are still low at 1.78 with the normal range being 2 to 7. That explains why I still tire so quickly. My tumour marker has risen again and is now at 9.2. I need to go for the tumour marker test again in 4 weeks and Dr L she gets concerned when it goes over 10. (I am concerned already as it is pretty close to 10 already). The scan also showed an angiomyolipoma on the right kidney. To make sure that all in well in the abdomen, I had to go for further CT scans today. The results are: ALL CLEAR. The month of September I will focus on working a few hours each day building up my strengths.

First post chemo tests

It is difficult to explain how stressful it is going for all these tests. I thought I was fairly in control until I was lying on the CT scan table waiting for the doctor. Those 15 minutes of waiting were just the worst - all alone in a medical gown with a small sheet to keep me warm. The actual scan and X-rays were done very promptly and I did not have to wait too long for the medical report. In essence the report says “no evidence of metastatic disease” which means no tumours found. Good news! Tomorrow I go to have blood drawn for the various tests on cell counts, tumour marker and kidney/liver functioning and then I see Dr L on Thursday morning. She called this morning to reschedule. Must mention that I have regained all the weight I had lost!