It's been a while since I last updated this blog. Generally I am feeling good apart from a bit of pain & discomfort sitting and of course I still have a bit of a legacy following the resection of my previous sarcoma. There's a little bit of uncertainty as to one's future and infections are very much trying to get me at the moment.
I call the respiratory infection that frequently crops up my 'resident bug' as it follows a similar pattern and symptoms every time. It has occured many times over the last four years, usually when I've been fatigued or overdoing things e.g 18 hour days 3D modeling, several days at a time. (This was mainly in 2005/06. There has been no danger of that happening in the last 18 months). I usually recognise the onset of symptoms and rest before it gets a hold on me.
However radio therapy, it's side affects such as fatigue, and the cancer have weakened me somewhat and I am very succeptable to infection. I appear to have a permament low grade infection in my upper chest (possibly lungs - I can't feel them). The infection starts in my chest and works it way up to my throat and nasal passages, the opposite of normal infections. Likewise symptoms of Kidney/UTI occur in conjunction usually on the left side, and work their way down. Eventually affecting the groin and area of sarcoma. I tend to think it's some sort of opportunistic bacterial infection that diabetics are succeptable to, such as psuedomonas, which I have had in the past. Bottom line is I'm improving on a daily basis and just have to remember to rest.
Right now as I write this I feel very good!!
Radiation therapy also affected bowel function.... bringing new meaning to the phrase "...the runs".... very little warning indeed, causing a bit of extra laundry LOL. Thankfully I was at home when these things happened. Such as life with cancer. Hopefully that's over for now.
What's been happening......? Actually quite a lot. The radiation therapy still appears to be working. The tumour appears to be still shrinking and softening day by day. It's a bit sore but not too bad. It's massively itchy for some reason. The cancer has been re-staged by scans including MRI, CT and PET. The ortho oncologist told that I appear to be clear of other tumours. Which really should be good news but possibly not, given the situation I mention below.
I have to say I'm never 100% convinced, given my medical history, other symptoms and that the current sarcoma remained undetected despite scans last year. Conditions such as collapsed lungs have been initially missed on chest CT scans in the past. I was shown the MRI which was very sharp as to detail. The tumour is very smooth and round and still a wee bit larger than I would like given that it is now going to be excised. I have no qualms about the MRI scan as long as it has been closely scruntinised for other tiny spots.
PET scans however, depend on the uptake of glucose by cancer cells and can easily be affected by a number of factors. I've noticed other patients being given valium injections to relax their muscles to improve the resolution of the scan. Even mild exercise prior to the scan can affect resolution as can exercise or exertion the previous day. I only had 2 hours sleep the night before scan. Whether that would affect glucose metabolism and scan resolution I do not know. The whole scan process appeared a bit rushed compared the previous one. The main reason for my doubts was that I was told the previous PET scan back in May/June was very clear and showed multiple hot spots but they weren't going to worry about the others other than buttock for the time being. These spots have somewhow vanished!!??
The reasons for these concerns are that prior to restaging the doctors told me that if I had spots anywhere other than the buttock I would be treated with Yondelis rather than going straight to surgery. Yondelis has yet to be approved in Australia and is only allowed to be administered on compassionate grounds, if the sarcoma has metastized or inoperable. Given it's proximity to the anus, being close to the skin, and the possible consequences of surgery it is almost borderline as to whether it would qualify for compassionate grounds possibly even without spread. Anyway Yondelis is not to be for the time being and surgery it is.
The date for surgery has been set for November 18. I have yet to be told how the surgery will likely affect me or how long I will be in hospital. I guess it depends on how surgery goes and what they find and have to do. Given that I only had 15 radiation treatments and normally this type of sarcoma usually has 25 at that hospital, I was hoping that they could reduce the tumour further given that there is a bit of radiation leeway. However that is not an option according to the surgeon. The radio-onclogist had been hoping to shrink it to a size that would not leave much of a scar. Whether he was further consulted I do not know. The ortho oncology surgeon has the attitude that it has to come out regardless and that is that! .... and no point in waiting. One has to go along with it:(
I guess my attitude is - I think the process causing sarcoma has spread already (my right neck and breast are very dodgy and also possibly left lung). I was right about this last time with the emergence of the groin/buttock sarcoma. Why be crippled by surgery and go through this all again when a little bit more perseverence, double checking and consideration could possible produce a different outcome.
Interestingly I was made to sign a surgery consent form in ortho-onclogy outpatients the other day which is unusual. This usually occurs in pre-admission and sometimes even on the day of surgery.
Everything is being rushed just that little bit too much.
The surgeon told me that I would be in hospital between four days and a week then qualified by saying '..about the same as last time." Last time I was in hospital for 3 weeks followed by 3 months recovery and rehab. Everything is so vague and non commital and makes it very hard to plan.
Hopefully another aspect of 'last time' won't be repeated as I suffered ischemic cardiac damage during admission and a partially collapsed lung. It was only due to the plastic surgeons doing their rounds the following morning and insisting that I be checked out that these were detected, some 24 hours after the event. The staff of the orthopedic ward didn't initially bother report or check me out when the collapse occured. Hopefully things go better this time especially in the area of communication and follow through. Memories of last year returning .... mmmm ....LOL
Hopefully all will go well and my pessimism is unfounded.
cheers
Rob
Monday, 10 November 2008
Monday, 20 October 2008
The Battle Continues
I certainly was correct in using sarcomabattle as the subdomain title of this blog, and last week certainly lived up to the title. I haven't been so persistently ill, physically drained and depressed as I was last week. I've had my share of illness in the past including a period of severe fevered ilnesses earlier this decade, but nothing as persistently oppressive as last week.
It was most likely a consequence of radio therapy. Fatigue, depression, pain and malaise are known possible side effects of radio therapy. Since radio therapy finished at the end of September I've been finding I have much less 'gas in the tank' as I usually have, with intense fatigue arising at some time during the day, occuring anytime from 10:00 AM onwards. Sometimes this manifests itself as intense yawning drowsiness and other times my chest is absolutely heaving and straining with fatigue and I have to drop what I'm doing and lie down to avoid a heart attack. This type of fatigue can occur very suddenly without any warning, which I find very alarming. These affects combine with diabetes and infection which always seems to be around in low grade and at times not so low grade forms. I've also had many diabetic 'hypos' (low glucose) in recent weeks which also strain one's body. I've had to reduce some of my diabteic medication as a result. One cannot forget all the pain either - incessant at times which greatly adds to any fatigue or oppression. I experienced similar fatigue episodes from February to April following a radiation booster for the previous Sarcoma in February.
This particular sarcoma, on my backside, has been painful for many months as I've written in earlier blog posts. Radiation therapy causes inflamation and tissue burning in itself, adding to any pain caused by disease. I had fifteen treatments of radio therapy this time around. After a few days matters became quite painful and I was prescribed Endone which was later upgraded to a combination of Ocycontin and Endone both of which finished last week. Withdrawal effects from this medication could have contributed to last week's events too. Fortunately pain levels have greatly subsided to be at minor annoyance level most of the time with occasional inflammatory flare ups. I take Panamax for the inflammation and have no desire to return to the heavy duty pain killers at this time. Radio therapy treatments were also punctuated by a break due to the effect on my skin. I had two weeks off in September. Hence treatment did not finish until 30 September.
For many years I also have experienced a recurring respiritory infection with identical progression and symptoms, usually when my body is at a low ebb due to other factors, such as other infections, overdoing things, not getting enough rest etc. This also reared its ugly head in the last couple of weeks. I tend to think it is some opportunistic bacterial infection such as psuedomonas due to the similarity of symptoms. I have had a severe psuedomonas infection in the past, which was never treated with the correct antibiotics, as the doctor at that time did not want me to go to hospital. As I've learned since that diabetics are particularly prone to psuedomonas infections and I can recall reading that pseudomonas is the most common cause of pneumonia in diabetics and that pneumonia is the most common cause of death in diabetics (pneumonia was in my father's case). Thus I would say that pseudomonas can be deadly to diabetes sufferers. Very few doctors that I have encountered are aware of this. They should be. I hope to blog further on pseudomonas in a seperate post.... just for interests sake.... (hypochondria or what? LOL).
In previous posts I've made mention of my belief that there is a strong element of infection involved in the development of these sarcomas. I have had continual problems in my right neck and chest and also left kidney for a number of years. Will these be the next spots for a sarcoma to develop? Doctors had been observing elusive lumps, tissue hardness and a fatty growth in the right thigh/groin/crotch/buttock for many years, which appeared be associated with earlier septic UTIs, yet last year couldn't see anything amiss until the latest Sarcoma started growing. The orthopedic oncology surgeon who was in charge of my case could not believe it when the current sarcoma was detected this year. He told me when this occurs it is usually a seperate occurance rather than a spread and it then keeps occuring until the person dies, usually a few years down the track. I tend to think that going on my past medical history the basis of these sarcomas formed and spread many years ago, becoming aggressive in the past two years. Again I hope to write more on these possibilities in a future blog post.
Returning to the battle - Last year I learned a new trick when after 2 months of persistent chest infection matters were climaxed by a winter flu bug and fevers. My temperature reached 39.5° C, and having been caught out in the past with fevers which exceeded 41° C, started to give contemplation to calling the ambulance, given my prior medical history and also the sarcoma. I took two panadol and rather than lie in bed and endure the fever, forced myself to get up out of bed and started to tidy the house and do some vacuuming just in case matters got worse. (I'd hate to end up in hospital and leave an untidy house LOL.) Anyway 1/2 hour later my temperature dropped to 37.2°C and I felt not too bad. The fever and immune system reaction caused by that flu also rid me of the persistent chest infection. Last week given the oppression of my symptoms I realised I would be in trouble if I didn't fight them. Thus on Thursday with only two hours sleep and despite the massive fatigue and occasional fever I spent a few hours working on the yard and general tidy up. I had to pace myself and punctuate with breaks, but we got there in the end. By Saturday I had largely recovered, though I have to be wary of sudden fatigue and still have the persistently runny nose that I've had for a number of weeks.
To survive all this is very much a matter of balance between activity and rest. Make sure one gets the appropriate rest and to force oneself into activity if one senses oneself succumbing to oppressive symptoms, provided one is able to of course. Also I'm finding it important not to spend to much time on any one activity and to consistantly vary activities. I've just about used up my sitting on bum at a computer time for the day and it's still only morning.... a brief rest, then some reading, music and house work..... fun times eh?? LOL.
It was difficult to see a doctor last week given that one has to make an appointment ahead of time and one was too ill to do much travelling. I did have to attend Ortho Oncology outpatients on Friday, but they didn't even ask how I was.... just arranged a scan and an appointment for next Friday. They are veering from their earlier announced plans..... more confusion and frustration.... the medical profession... !!!!. Ever heard the expression like herding cats? .......Yet another future post on my current medical encounters & frustrations.
Of course all this has put a dent in my computer based hobbies such as 3D modeling, though I did manage to squeeze in a bit of work yesterday on the Sopwith Snipe for Flight Simulator X. I had put it aside for a couple of weeks. I've alsdo dropped notions of Fokkers for a few weeks at least LOL. I still hope to be able to release the Snipe prior to surgery though it may not be as complete as I would like.... That depends on the medical plans and how I am likely to end up after surgery. If a quick recovery is likely then I may leave the Snipe and finish it more completely after surgery.
Time for a break and then on with the day....
Cheers
Rob
It was most likely a consequence of radio therapy. Fatigue, depression, pain and malaise are known possible side effects of radio therapy. Since radio therapy finished at the end of September I've been finding I have much less 'gas in the tank' as I usually have, with intense fatigue arising at some time during the day, occuring anytime from 10:00 AM onwards. Sometimes this manifests itself as intense yawning drowsiness and other times my chest is absolutely heaving and straining with fatigue and I have to drop what I'm doing and lie down to avoid a heart attack. This type of fatigue can occur very suddenly without any warning, which I find very alarming. These affects combine with diabetes and infection which always seems to be around in low grade and at times not so low grade forms. I've also had many diabetic 'hypos' (low glucose) in recent weeks which also strain one's body. I've had to reduce some of my diabteic medication as a result. One cannot forget all the pain either - incessant at times which greatly adds to any fatigue or oppression. I experienced similar fatigue episodes from February to April following a radiation booster for the previous Sarcoma in February.
This particular sarcoma, on my backside, has been painful for many months as I've written in earlier blog posts. Radiation therapy causes inflamation and tissue burning in itself, adding to any pain caused by disease. I had fifteen treatments of radio therapy this time around. After a few days matters became quite painful and I was prescribed Endone which was later upgraded to a combination of Ocycontin and Endone both of which finished last week. Withdrawal effects from this medication could have contributed to last week's events too. Fortunately pain levels have greatly subsided to be at minor annoyance level most of the time with occasional inflammatory flare ups. I take Panamax for the inflammation and have no desire to return to the heavy duty pain killers at this time. Radio therapy treatments were also punctuated by a break due to the effect on my skin. I had two weeks off in September. Hence treatment did not finish until 30 September.
For many years I also have experienced a recurring respiritory infection with identical progression and symptoms, usually when my body is at a low ebb due to other factors, such as other infections, overdoing things, not getting enough rest etc. This also reared its ugly head in the last couple of weeks. I tend to think it is some opportunistic bacterial infection such as psuedomonas due to the similarity of symptoms. I have had a severe psuedomonas infection in the past, which was never treated with the correct antibiotics, as the doctor at that time did not want me to go to hospital. As I've learned since that diabetics are particularly prone to psuedomonas infections and I can recall reading that pseudomonas is the most common cause of pneumonia in diabetics and that pneumonia is the most common cause of death in diabetics (pneumonia was in my father's case). Thus I would say that pseudomonas can be deadly to diabetes sufferers. Very few doctors that I have encountered are aware of this. They should be. I hope to blog further on pseudomonas in a seperate post.... just for interests sake.... (hypochondria or what? LOL).
In previous posts I've made mention of my belief that there is a strong element of infection involved in the development of these sarcomas. I have had continual problems in my right neck and chest and also left kidney for a number of years. Will these be the next spots for a sarcoma to develop? Doctors had been observing elusive lumps, tissue hardness and a fatty growth in the right thigh/groin/crotch/buttock for many years, which appeared be associated with earlier septic UTIs, yet last year couldn't see anything amiss until the latest Sarcoma started growing. The orthopedic oncology surgeon who was in charge of my case could not believe it when the current sarcoma was detected this year. He told me when this occurs it is usually a seperate occurance rather than a spread and it then keeps occuring until the person dies, usually a few years down the track. I tend to think that going on my past medical history the basis of these sarcomas formed and spread many years ago, becoming aggressive in the past two years. Again I hope to write more on these possibilities in a future blog post.
Returning to the battle - Last year I learned a new trick when after 2 months of persistent chest infection matters were climaxed by a winter flu bug and fevers. My temperature reached 39.5° C, and having been caught out in the past with fevers which exceeded 41° C, started to give contemplation to calling the ambulance, given my prior medical history and also the sarcoma. I took two panadol and rather than lie in bed and endure the fever, forced myself to get up out of bed and started to tidy the house and do some vacuuming just in case matters got worse. (I'd hate to end up in hospital and leave an untidy house LOL.) Anyway 1/2 hour later my temperature dropped to 37.2°C and I felt not too bad. The fever and immune system reaction caused by that flu also rid me of the persistent chest infection. Last week given the oppression of my symptoms I realised I would be in trouble if I didn't fight them. Thus on Thursday with only two hours sleep and despite the massive fatigue and occasional fever I spent a few hours working on the yard and general tidy up. I had to pace myself and punctuate with breaks, but we got there in the end. By Saturday I had largely recovered, though I have to be wary of sudden fatigue and still have the persistently runny nose that I've had for a number of weeks.
To survive all this is very much a matter of balance between activity and rest. Make sure one gets the appropriate rest and to force oneself into activity if one senses oneself succumbing to oppressive symptoms, provided one is able to of course. Also I'm finding it important not to spend to much time on any one activity and to consistantly vary activities. I've just about used up my sitting on bum at a computer time for the day and it's still only morning.... a brief rest, then some reading, music and house work..... fun times eh?? LOL.
It was difficult to see a doctor last week given that one has to make an appointment ahead of time and one was too ill to do much travelling. I did have to attend Ortho Oncology outpatients on Friday, but they didn't even ask how I was.... just arranged a scan and an appointment for next Friday. They are veering from their earlier announced plans..... more confusion and frustration.... the medical profession... !!!!. Ever heard the expression like herding cats? .......Yet another future post on my current medical encounters & frustrations.
Of course all this has put a dent in my computer based hobbies such as 3D modeling, though I did manage to squeeze in a bit of work yesterday on the Sopwith Snipe for Flight Simulator X. I had put it aside for a couple of weeks. I've alsdo dropped notions of Fokkers for a few weeks at least LOL. I still hope to be able to release the Snipe prior to surgery though it may not be as complete as I would like.... That depends on the medical plans and how I am likely to end up after surgery. If a quick recovery is likely then I may leave the Snipe and finish it more completely after surgery.
Time for a break and then on with the day....
Cheers
Rob
Monday, 25 August 2008
Radiation Therapy
Radiation therapy for the most recent sarcoma mass commenced last Thursday. This time around I will have 15 treatments over a three week period followed by a break and then a MRI scan. The radio oncologist is hoping to shrink the sarcoma so that it can be removed without requiring plastic surgery. I gather that these sarcomas usually require 25 treatments, however given the location of the sarcoma and being difficult to treat (buttock/anus) he doesn't want to do anymore than required. I'm guessing that surgery will be mid October if this series of treatments does its trick.
The tumour is now quite large. It's larger than my hand with my fingers spread out... I guess about 10cm. It's growing up the side of my bum crack and pushing across and also spreading across the buttock underneath my hip. Pain is a bit of a problem, though it is managable about 60% of the time. It appears to flare up from time to time and will be extreme for 2-3 days before subsiding. I guess it depends on one's activities. Sitting for anything other than a short time is no go. Going to the toilet can stir things up too. I clean the skin mainly with aqueous solution and was also using tea tree oil prior to treatment. I've stopped the tea tree oil while undergoing radiotherapy. I am managing on moderate pain killers at the moment, though the doctor says I may eventually have to be treated continually with morphine. I'm hoping to avoid that. Once radiotherapy is complete I will no longer have to travel and that may not be necessesary. Last time I had radiotherapy pain didn't really start until the second last day of treatment, but then became acute for 2 weeks. With only 3 weeks this time, it might not be so bad. However the sarcoma is in a sensitive place.
Many thanks to those people who have sent me emails and also PM's in various forums, (especially Brad - I hope all is going well with your GIST treatment). Everyone's emails are greatly appreciated.
I hope to keep this blog a bit more update than I have been. I have heaps more to write however I have to get myself ready for today's treatment.
cheers
Rob
The tumour is now quite large. It's larger than my hand with my fingers spread out... I guess about 10cm. It's growing up the side of my bum crack and pushing across and also spreading across the buttock underneath my hip. Pain is a bit of a problem, though it is managable about 60% of the time. It appears to flare up from time to time and will be extreme for 2-3 days before subsiding. I guess it depends on one's activities. Sitting for anything other than a short time is no go. Going to the toilet can stir things up too. I clean the skin mainly with aqueous solution and was also using tea tree oil prior to treatment. I've stopped the tea tree oil while undergoing radiotherapy. I am managing on moderate pain killers at the moment, though the doctor says I may eventually have to be treated continually with morphine. I'm hoping to avoid that. Once radiotherapy is complete I will no longer have to travel and that may not be necessesary. Last time I had radiotherapy pain didn't really start until the second last day of treatment, but then became acute for 2 weeks. With only 3 weeks this time, it might not be so bad. However the sarcoma is in a sensitive place.
Many thanks to those people who have sent me emails and also PM's in various forums, (especially Brad - I hope all is going well with your GIST treatment). Everyone's emails are greatly appreciated.
I hope to keep this blog a bit more update than I have been. I have heaps more to write however I have to get myself ready for today's treatment.
cheers
Rob
Tuesday, 1 July 2008
More Hospital Sojourns
I thought I was going to have a bit of a respite from trailing into hospital until radio therapy planning. This week I've a couple of scans lined up at hospital on different days. A CT scan of my chest tomorrow and an ultrasound scan of my neck on Thursday.
Pain and comfort wise I'm having a bit of a mixed up time. Yesterday (Monday) was almost pain free during the day. However last night I had a tough time of it having my sleep disturbed by pain many times. Most of the pain was on the right side of the body - thigh, buttock, groin, chest and neck. My neck felt as if it had been punched. It will be interesting to see what the scans reveal, if anything.
It's quite scary that many of these symptoms have been on the go for as long as 6 years, possibly 7 in the groin and lower thigh, yet many of them have been dismissed as little consequence by the medics, then suddenly a dirty great sarcoma grows in the space of a few months. Going on my symptoms I still think infection has driven the whole thing and may still be on the go. There's a strong link with UTI symptoms, inflammation and the eventual developement of these sarcomas. Maybe an outside chance of lymphoma, particularly Hodgkins given some of my symptoms? (Pain in lymph nodes on the consumption of alcohol - though the node pain is present without having consumed such in recent times.) Pain has been very bad in my lower regions and thigh all day today :( One uncomfortable dude, LOL.
Rob
Pain and comfort wise I'm having a bit of a mixed up time. Yesterday (Monday) was almost pain free during the day. However last night I had a tough time of it having my sleep disturbed by pain many times. Most of the pain was on the right side of the body - thigh, buttock, groin, chest and neck. My neck felt as if it had been punched. It will be interesting to see what the scans reveal, if anything.
It's quite scary that many of these symptoms have been on the go for as long as 6 years, possibly 7 in the groin and lower thigh, yet many of them have been dismissed as little consequence by the medics, then suddenly a dirty great sarcoma grows in the space of a few months. Going on my symptoms I still think infection has driven the whole thing and may still be on the go. There's a strong link with UTI symptoms, inflammation and the eventual developement of these sarcomas. Maybe an outside chance of lymphoma, particularly Hodgkins given some of my symptoms? (Pain in lymph nodes on the consumption of alcohol - though the node pain is present without having consumed such in recent times.) Pain has been very bad in my lower regions and thigh all day today :( One uncomfortable dude, LOL.
Rob
Friday, 27 June 2008
Myxoid Liposarcoma - again
I've now received the verdict. Myxoid Liposarcoma has been confirmed by both biopsy and the PET scan shows a hot spot for the area concerned. However the real bad news is that the Ortho Oncologist thinks it is a seperate instance of liposarcoma rather than a spread of the original. He told me it could even have started in the groin/buttock region and spread to the lower thigh. I was told that the prognosis for this type of liposarcoma is poor and that it keeps on re-occuring in different parts of the body until it is no longer able to be treated and then one dies. He told me that I won't die in the short term but will be very lucky to last ten years and most likely about five years. They are going to treat this type of sarcoma as a primary sarcoma with radio therapy followed surgical removal. Going on observations of my own symptoms in the affected regions, over a number of years, I tend to agree it is a seperate occurence. Other hotspots of disease over the years include my spine and my left leg. I still tend to think some sort of infection has set me up for or caused sarcoma.
Myxiod liposarcoma is a vile disease. The doctor described it as a malignant slime the suddenly develops and grows in various parts of the body.
I did ask about Yondelis/Trabectedin and initially the doctor was somewhat confused. However a couple of oncologists were close at hand one of whom new about it. In Australia it is only being given on compassionate grounds and Newcastle Hospital is the only center in Australia trialing it. He said it might be do-able if sarcoma re-occurs after this treatment, but we'll see and cross that bridge if and when we come to it.
The radio-oncologist then saw me. He told me treatment would be similar to last time. This time I'll have 15 treatments over 3 weeks and then a MRI scan to see it has shrunk small enough to allow surgical removal without having to have plastic surgery. So more ordeals are ahead. I was informed that there is currently a waiting list of 4 to 5 weeks before radiotherapy can commence. It is unfortunate that there was a 3 to 4 week delay in organising a biopsy as treatment would then be commencing next two weeks if it had occured on time.
The doctors also apologised for the delay in organising the biospy. It was something that should not have happened and I was told they will investigate to see what went wrong with the system and why the resident's request was not actioned and followed up. The doctor I tried to contact was on holiday and my calls were not passed on to another doctor. Anyway we're moving forward again.... a pity about the above delay in biopsy though. :(
Pain is a bit of an issue at present. I see my GP early next week. Let's hope he can assist. In the meantime Panadol and nurofen taken together seem to assist. However they do wear off after a couple of hours. The bus trips to and from hospital today were absolute agony.
Anyway it's time to reflect. There are lots of things to think about. I guess the main issues are quality of life in the long term and the best way to really enjoy life in the short term. I can think of many things LOL. :)
cheers
Rob
Myxiod liposarcoma is a vile disease. The doctor described it as a malignant slime the suddenly develops and grows in various parts of the body.
I did ask about Yondelis/Trabectedin and initially the doctor was somewhat confused. However a couple of oncologists were close at hand one of whom new about it. In Australia it is only being given on compassionate grounds and Newcastle Hospital is the only center in Australia trialing it. He said it might be do-able if sarcoma re-occurs after this treatment, but we'll see and cross that bridge if and when we come to it.
The radio-oncologist then saw me. He told me treatment would be similar to last time. This time I'll have 15 treatments over 3 weeks and then a MRI scan to see it has shrunk small enough to allow surgical removal without having to have plastic surgery. So more ordeals are ahead. I was informed that there is currently a waiting list of 4 to 5 weeks before radiotherapy can commence. It is unfortunate that there was a 3 to 4 week delay in organising a biopsy as treatment would then be commencing next two weeks if it had occured on time.
The doctors also apologised for the delay in organising the biospy. It was something that should not have happened and I was told they will investigate to see what went wrong with the system and why the resident's request was not actioned and followed up. The doctor I tried to contact was on holiday and my calls were not passed on to another doctor. Anyway we're moving forward again.... a pity about the above delay in biopsy though. :(
Pain is a bit of an issue at present. I see my GP early next week. Let's hope he can assist. In the meantime Panadol and nurofen taken together seem to assist. However they do wear off after a couple of hours. The bus trips to and from hospital today were absolute agony.
Anyway it's time to reflect. There are lots of things to think about. I guess the main issues are quality of life in the long term and the best way to really enjoy life in the short term. I can think of many things LOL. :)
cheers
Rob
A few Sarcoma links
I'm up bright and early on a rather cold June morning (winter in Oz) getting ready to go into to Brisbane for my outpatient's appointment. I just dropped by the Sarcoma Alliance forums to gain a little insight into current sarcoma treatments and I noticed a post on the faces of Sarcoma. The thread posted a few links which I followed through and found to be quite moving.
I'll post more on this later. In the interim here are some sarcoma links.
http://sarcomaalliance.org/Main.html
http://www.sarcomaalliance.org/cgi-executables/anyboard.cgi/anyboard9/forum/-=ab=-/index.html?cmd=retr&vf=aW5kZXguaHRtbA%3D%3D
http://www.facesofsarcoma.com/
http://abc-survivors.net/sarcoma_cause/main.php
http://liddyshriversarcomainitiative.org/
Rob
I'll post more on this later. In the interim here are some sarcoma links.
http://sarcomaalliance.org/Main.html
http://www.sarcomaalliance.org/cgi-executables/anyboard.cgi/anyboard9/forum/-=ab=-/index.html?cmd=retr&vf=aW5kZXguaHRtbA%3D%3D
http://www.facesofsarcoma.com/
http://abc-survivors.net/sarcoma_cause/main.php
http://liddyshriversarcomainitiative.org/
Rob
Thursday, 26 June 2008
Getting Ready
It's the 'big day' tomorrow, when at last after 4+ weeks of waiting, I find out what is confronting me and the future possibly holds. I have to say it's been a long week so far. Today I mainly spent tidying up around the house, putting everything away and ear marking what I have to throw out around the house. I want to be prepared for what ever lies in front of me. I also did some shopping in Cleveland. The early morning was spent working on terrain for a CFS3 enhancement project. I want to get my little part right before any treatment disrupts such. The latest batch of terrain is rendering as I type this.
Anything is possible..... it's a pity this happening now. There are new treatments such as trabectedin/Yondelis which appear to effective against liposarcoma being trialed as well as other new chemo based treatments. I'm dreading major surgery which is quite on the cards....... :( Yondelis has also been trialed and used on compassionate grounds in Australia. Whether I would qualify I don't know.
Roll on tomorrow.
Rob
Anything is possible..... it's a pity this happening now. There are new treatments such as trabectedin/Yondelis which appear to effective against liposarcoma being trialed as well as other new chemo based treatments. I'm dreading major surgery which is quite on the cards....... :( Yondelis has also been trialed and used on compassionate grounds in Australia. Whether I would qualify I don't know.
Roll on tomorrow.
Rob
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