Hi , here is an update now that the op results have come through and the drain from the lung op have been removed. Despite earlier believing that the lungs were clear it now appears not and that in actual fact the cancer has spread even further and is more widespread in the lungs than was earlier believed. In actual fact my diagnosis is now that of adenoma Lung Cancer and no longer primary unknown. Tests from swabs taken inside the lung show the bad guys but good news is that that which was drained from outside the lung is clean. So the first six cycles of chemo although they slowed the cancer and appeared to be working did not in actual fact work and the shit has manifested itself in the lungs which will explain the shortness of breath and tired sensations being experienced.
But good news is that it has not spread to any other places or organs and there is light at the end of the tunnel. This comes in the form of a clinical study or trial which I have just qualified for. This entails the course of another chemo which does not have any of the bad side effects. The treatments I had was first line or preferred in the treatment of what I have. This other treatment called ALIMTA is on the market and may be a future firstline of defense against lung cancer but due to costs many medical aids refuse to endorse and pay for it. My trial will be for the use of this together with a biological drug which may or may not be administered. I say this as I will take it not knowing if it is the real thing or a placebo ! At the end of the day though I get to get the new chemo which I believe is the best way forward in terms of combating this thing. The other drug is called ZACTIMA. So today wed 30 Jan I went for all the scans in order to see where we are before proceeding with the study. Nice thing is that due to it being a study regular and more frequent scans and checks are done so the feedback is more thorough so we should get an early indicator of where this thing is going.
All in all it is a very stressfull, daunting and intimidating time. A walk up some stairs now leaves me absolutely poked. Both Wilmien and I were shattered by the news as I was hoping to be hopping and skipping coming out after the lung op. As Winston said when going through hell just keep going. We are keeping our chins up and carrying on as best we can. It is difficult but we forge forward. I have faith in all around me, My Maker and the doctors that we are on the right road. Keep those thoughts and prayers coming and next time I will try pop a pic up.
Love and best wishes to you all !
Some good some bad news. The entry with just good news is yet to be posted.
Wednesday, January 30, 2008
Sunday, January 27, 2008
tube problems
Hi Folks
Last monday scans revealed that the lungs appear clear ! That the lymph nodes have shrunk but only a minimal amount and that there was much liquid sitting under my right lung. So lets summarise - it has not spread any more and the lungs are clear - excellent. The lymph nodes are still inflamed but down minimally - not ideal but fine. So the battle will continue, but for me it is good news. I have had this unbearable pain where my liver is and right chest and for the last 10 weeks it has been unexplained so now I know and with these results a quick op was waxed. For me it was just so great to get an answer to why i had this as my imagination had gone wild. I could'nt believe how quickly it was organised with who I believe is a difficult to see lung specialist surgeon. Was for tuesday but in the end on Wednesday I went in and had 1,5 litres of fluid removed from under the right lung. A drain was put in and a biopsy was taken out from inside the the lung. I have been told that tests on what was outside (fluid was in chest cavity not in lung) and the lung biopsy could now point us in the right direction in determing the primary. The cause of the fluid could be infection, side effect of the chemo or was possibly a tumour which I have been told now did not appear so. So for a quick update I though I would share this with you quickly. This while I have my delicious drain and vac pac sticking out my right flank ! It will come out tomorrow and the results of all the test await me. Another one of those BIG days that will determine the road and treatment forward. It has been a rough 4 days with some discomfort & pain & a little bit of a fever every night. Same shit different specialists. Depp down it feels I am getting a grip on this thing.
Will update again shortly. This lung story reminded me of the tubes & bicycling days. Got my seeding for Argus - F. Will tell doc tomorrow I got to start training. Till then keep your tubes inflated !
Douglas & drain
Last monday scans revealed that the lungs appear clear ! That the lymph nodes have shrunk but only a minimal amount and that there was much liquid sitting under my right lung. So lets summarise - it has not spread any more and the lungs are clear - excellent. The lymph nodes are still inflamed but down minimally - not ideal but fine. So the battle will continue, but for me it is good news. I have had this unbearable pain where my liver is and right chest and for the last 10 weeks it has been unexplained so now I know and with these results a quick op was waxed. For me it was just so great to get an answer to why i had this as my imagination had gone wild. I could'nt believe how quickly it was organised with who I believe is a difficult to see lung specialist surgeon. Was for tuesday but in the end on Wednesday I went in and had 1,5 litres of fluid removed from under the right lung. A drain was put in and a biopsy was taken out from inside the the lung. I have been told that tests on what was outside (fluid was in chest cavity not in lung) and the lung biopsy could now point us in the right direction in determing the primary. The cause of the fluid could be infection, side effect of the chemo or was possibly a tumour which I have been told now did not appear so. So for a quick update I though I would share this with you quickly. This while I have my delicious drain and vac pac sticking out my right flank ! It will come out tomorrow and the results of all the test await me. Another one of those BIG days that will determine the road and treatment forward. It has been a rough 4 days with some discomfort & pain & a little bit of a fever every night. Same shit different specialists. Depp down it feels I am getting a grip on this thing.
Will update again shortly. This lung story reminded me of the tubes & bicycling days. Got my seeding for Argus - F. Will tell doc tomorrow I got to start training. Till then keep your tubes inflated !
Douglas & drain
Tuesday, January 15, 2008
New Year - New News !
Jan Evaluation
Christmas has come and gone, the new year is dawned and Chemo is klaar ! The last cycle # 6 which has come and gone was not as bad as #5 but still did its thing. It was probally made a little softer by being away in the awesome environment down at Maanskynbaai where a great 2 weeks was had by Wilmien, Oliver, Ella and myself.
Now it’s crunchtime with the CT scan and follow up with the doctors on Monday 21 Jan to evaluate how the treatment has gone. I am bullish and optimistic but it is none the less a anxious and daunting time with expectation of the outcome being an onerous one ! I am feeling good and strong but the Chemo has such a heavy impact on a person with there being so much else that takes shots while the cancer is being hit hard that you are left with strange pains and funny sensations which tends to make the imagination run riot. I am focusing on staying positive and ridding myself of the mutant cells and constantly thinking of remission and a return to the active and sporting ways of the past.
I have gone back to work and although feeling a little tired and lethargic from time to time am coping well. Things at home are also great with Oliver & Ella keeping me on my toes. Ella has started crawling and is standing up against everything. She is gorgeous and very much daddy’s little girl, I could eat her up ! Oliver is stubborn and precocious (big word for a boy from Bloem!) and has a mind of his own. The 2 of them make for a very entertaining mix which I love and thrive on.
The 2 weeks break we had just past Hermanus was perfect as when I had my last little top-up on 3rd Jan my blood counts were low and I was advised to steer clear of public spaces and too many people. Wilmien and I had a great time and rested well. Many thanks to the Van Hoogstratens for making the ‘boathouse’ available.
So now we head for Monday’s check-up. We hope, trust, pray, visualize, conceptualize and focus on an excellent result. Thanks for the support, mails and thoughts. It all helps.
Till then check out some picks of the holidays at the boathouse.
Here’s wishing all a great 2008, especially me !
Nkosi Gakulu, Aruvwa, totsiens !!!
Christmas has come and gone, the new year is dawned and Chemo is klaar ! The last cycle # 6 which has come and gone was not as bad as #5 but still did its thing. It was probally made a little softer by being away in the awesome environment down at Maanskynbaai where a great 2 weeks was had by Wilmien, Oliver, Ella and myself.
Now it’s crunchtime with the CT scan and follow up with the doctors on Monday 21 Jan to evaluate how the treatment has gone. I am bullish and optimistic but it is none the less a anxious and daunting time with expectation of the outcome being an onerous one ! I am feeling good and strong but the Chemo has such a heavy impact on a person with there being so much else that takes shots while the cancer is being hit hard that you are left with strange pains and funny sensations which tends to make the imagination run riot. I am focusing on staying positive and ridding myself of the mutant cells and constantly thinking of remission and a return to the active and sporting ways of the past.
I have gone back to work and although feeling a little tired and lethargic from time to time am coping well. Things at home are also great with Oliver & Ella keeping me on my toes. Ella has started crawling and is standing up against everything. She is gorgeous and very much daddy’s little girl, I could eat her up ! Oliver is stubborn and precocious (big word for a boy from Bloem!) and has a mind of his own. The 2 of them make for a very entertaining mix which I love and thrive on.
The 2 weeks break we had just past Hermanus was perfect as when I had my last little top-up on 3rd Jan my blood counts were low and I was advised to steer clear of public spaces and too many people. Wilmien and I had a great time and rested well. Many thanks to the Van Hoogstratens for making the ‘boathouse’ available.
So now we head for Monday’s check-up. We hope, trust, pray, visualize, conceptualize and focus on an excellent result. Thanks for the support, mails and thoughts. It all helps.
Till then check out some picks of the holidays at the boathouse.
Here’s wishing all a great 2008, especially me !
Nkosi Gakulu, Aruvwa, totsiens !!!
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