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
Monday, 20 October 2008
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
Wednesday, 25 June 2008
An unfortunate anniversary
It's one year and 2 days since my first post in this blog. I had hoped to be clear of cancer by now. Alas it was not to be. In early April 2008, 2 days after the radio-oncoligist shook my hand and congratulated me on being a cancer survivor, I felt what was then a small lump which I hoped was a hemoroid. Since then it has grown quite large. A case of here we go again......
I still don't know exactly what the mass is. I've been told it is most likely a re-occurence of liposarcoma going on the MRI. As I've posted before Friday is verdict day. Anything is possible. I'm assuming there will be quite an ordeal ahead so I might as well enjoy a few days of peace and quiet while I can.
This blog will be my main blog for a while until I know how things will evolve. I'd still like to pursue hobbies and pastimes such as 3D graphics and virtual aircraft creation. However I'd guess sitting will become progressively difficult, (not mention going to the toilet). Pain wise things vary greatly on a day to day basis. Some days are almost pain free... others level 5-6 pain for several hours. There appears to be an element of infection involved, with both pain and massive itching at times. The left buttock is affected too from time to time.
Rob
I still don't know exactly what the mass is. I've been told it is most likely a re-occurence of liposarcoma going on the MRI. As I've posted before Friday is verdict day. Anything is possible. I'm assuming there will be quite an ordeal ahead so I might as well enjoy a few days of peace and quiet while I can.
This blog will be my main blog for a while until I know how things will evolve. I'd still like to pursue hobbies and pastimes such as 3D graphics and virtual aircraft creation. However I'd guess sitting will become progressively difficult, (not mention going to the toilet). Pain wise things vary greatly on a day to day basis. Some days are almost pain free... others level 5-6 pain for several hours. There appears to be an element of infection involved, with both pain and massive itching at times. The left buttock is affected too from time to time.
Rob
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