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

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

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

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

Biopsy

I meant to post about this on Thursday, but for some reason blogger didn't post it even though I thought I'd pushed the right buttons.

On Thursday afternoon I received a call from one of the orthopedic doctors apologising for the delay in organising a biopsy on the new mass. Someone in the system had put it down way in the future without realising it was urgent. Anyway it was way past the time when it should have beem biopsied and he informed me he had organised the biopsy for the following day, Friday, and that he wanted me to come in to hospital immediately that night, so that I could be ready in the morning . He also informed me that he had arranged an ENT review for the lymph nodes in my neck.

I was making my evening meal at the time he called and finished doing so. So off I went to Brisbane. I chose to leave my car at home as I did not like leaving it out over night, especially as there had been much vandalism of cars last year (thankfully the police now have a station on the island and things are now a bit more peaceful). Ferries are only hourly at that time of night and the bus did a bit of a Cook's tour of the 'burbs on the way in. I arrived at the hospital a bit after 8:45PM and their admissions counter was closed so I went up to the ward. The doctor had a lengthy chat with me.

The biopsy required fasting from midnight. I always find sleeping in a new environment such as hospitals always takes a bit of getting used thus I was surprised that I fell asleep easily and enjoyed a good night's sleep, despite all the clatter and noise.

The ENT team saw me early in the morning and the ENT consultant was very happy with nose, throat and mouth. He asked me about TB (which I once tested positive to but was not followed up at the time). Anyway he gave me a clean bill of health as to ENT and dental problems and suggested the possibility of lymphoma as a possible cause of the lymph nodes.

However the Orthopedic doctor told he doesn't think the nodes are lymphoma as the nodes of the jugular chain are slightly enlarged. He told me that lymphoma does not usually involve an entire chain of lymph nodes and usually just one or two. He suggested they are probably just reactive. (They have been a feature in that region since 2002, slowly spreading and becoming very hard, even if not large. The nodes are also reactive to the consumption of alcohol, a symptom of Hodgkin's lymphoma. Hodgkin's nodes usually require removal to fully diagnose as there is a reactive component to Hodgkin's nodes and the cellular pattern required to diagnose Hodgkins is difficult to obtain by needle biopsy. - None of the doctors appear to realise that making mention of a possible needle biopsy - Hypochondriac Rob, Lol -Who am I to suggest illnesses to the medical profession? Perhaps more on thus subject in a future post).

After many hours of starvation, the biopsy on the mass finally happened about 5:00PM on Friday. The biopsy was carried out by fine needle aspiration in a CT scanner. (Hence the delay as CT were busy with IC and emergency cases on Friday, and I kept getting pushed back). The procedure was relatively painless and no more discomforting than the pain I am already in (which varies between level 0 to level 7). There was fair bit of fluid in the mass which the radiologist drained to make life a bit more comfortable.

The orthopedic doctor did not tell me the results of the PET scan, preferring to wait until all the results are together. He did tell me that the MRI scan does look like a sarcoma however until all the results are known he does not know for sure. He told me that I will receive the results in the ortho oncology outpatient's clinic this coming Friday. He didn't like to speculate on any possible treatments if it was sarcoma, until the 'big wigs' review the scans and results next week.

Blood pressure was a bit of a problem during the admission. The stress of the whole situation, rush and some of the frustrations would certainly add to it.

I spent Friday night in hospital due to the late completion of the biopsy.

All in all despite the frustration of the delays, hunger and long wait I was very pleased with the way things went. It was a pleasant change to encounter such a communicative and obliging doctor... he certainly works very long hours. The nurses were very good this time too.

Looking forward to Friday....

Rob

Mixed Weekend.

On the positive side of things I upped my exercise quotient quite a lot, going for several long walks at a hard pace. There are certainly plenty of hill to walk up, thus giving my heart a good bit of exercise as well as my legs. The walks were invigorating though I possibly went a bit over the U-curve yesterday (Sunday) as my nose started to run due to the strain toward the end of the walk and I felt a little bit flat. The island is beautiful with an abundance of birds, the weather being very mild for winter.

On the downside the walk possibly aggravated the new growth causing it to become quite swollen. It was very painful and I had to turn in early last night.

The mass doesn't seem as large today. It is very inflamed and there is much much pain in the groin, crotch, upper thigh and genitals as well as the mass in my backside. As usual I still think there is some sort of infection involved.

I can recall one of my GP's back in 2000 during a period of illness, musing at an x-ray of my spine, pointing out areas of the x-ray of concern to him saying ".... a touch of spinal cancer perhaps?" While stroking his beard. I said "Just a touch eh?" (It wouldn't want to be much more than a touch.) I pointed out that antibiotics appeared to break up the pain and take the bite out of it. He said "Ah.... if only a little pill could cure all this...." (Diabetics can get an infected spine from ordinary every day bacteria.) Of course I'd love it if a little pill could indeed cure what currently afflicts me.

I didn't get a good night's sleep last night being in a fair bit of pain and discomfort which disturbed my sleep a fair bit. Today has been restful in comparison though I haven't been able to do all that I intended. I have had better days.

Still no appointment letters or news from the hospital :( I did send an email to their enquiry addy on Friday in addition to my calls. I'm starting to wonder if they exist. I'll call again tomorrow.

Rob

On a good news note.....

Despite the possible spread of liposarcoma to my backside (still hoping it's infection), my leg still continues to slowly recover from surgery. It is now a lot less painful and I am reasonably mobile. I notice gradual improvement almost week by week. The only thing I can't do very well is bend over and pick an object off the ground or squat down. Tying my shoelaces when out and about is very difficult.

I went into to Brisbane today to lodge a claim for superannuation access and enjoyed quite a pleasant day. It's times like that when one notices these improvements. It was a beautiful day despite being winter.... about 26°C. The sea on the Bay was almost like glass. If only I had a camera.

Still no word from the hospital..... looks like I've been forgotten right enough. I'll make an appointment to see my GP next Monday/Tuesday and maybe he can move things along. I'm tempted to phone the hospital again tomorrow, as ortho-oncology outpatients are on Friday mornings.... we'll see.

Rob

Some future posts.

I've decided to redo my earlier post on lymphadenopthay as it was a bit long and negative. Thus I will repost at a future date. I'll also blog on some of my prior history which may be pertinent. I do consider my cancer journey to have started in 2000/2001 as I had a number of quite nasty illnesses which both my GPs of the time suspected were caused by some form of cancer trying to happen. I'd generally recovered from these illnesses by 2nd quarter 2002, however some symptoms persisted even though I was otherwise well and enjoying life, things gradually and slowly went downhill from April 2003 onwards. There was also an interesting period back in 1995/96 with recurring infection which I might detail, as some types of infection can set one up for cancer. I have also been afflicted in the past by severe pseudomonas infection which was never treated with the appropriate antibiotics. The doctor, at that time, did want to hospitalize me and winged it with ordinary anti-biotics. Pseudomanas is a common bacteria, found in water and soil, enjoys warm humid conditions and causes problems for diabetic sufferers and people with illnesses such as cystic fibrosis. That bacteria may be responsible for some current symptoms.

All this and more. I may even write general interest articles written from the lay perspective and start to post links to articles on sarcoma, infection, cancer in general, and diabetic health issues. I'm trying to aim for articles about one screen size on a 1280x768 monitor. I'll probably write articles in parts. (Fodder for hypochondriacs.... 'grin'.)

My focus from now on is going to be on surviving.... a bit more exercise, perhaps more assertive with the medics (whether that will work lol ?.... they just do their own thing anyway) and more health blog articles. 3D graphics is great for providing a focus and perhaps some income on recovery but will take a back seat to survival. I'll drop some activities such as terrain creation for CFS3 for the time being.

Rob

Still Waiting.......

I still have not received any communications from the Princess Alexandra Hospital. I did call again yesterday as there were no appointments in the mail. I was originally told by a resident doctor, during my last outpatient's visit, that I would most likely have an admission on 27 May for a needle biopsy of the new mass and that other tests/reviews would occur on the same admission. One of the reviews that was supposed to take place, on that occasion, was an ENT review (which is not a major concern for me at this time). However as mentioned previously, that's been shunted away to some yet to be determined time in the future. Also as mentioned previously, I also called the hospital last week and my enquiry was not responded to either.

I am starting to become concerned. The doctors did say that it appears to be a re-occurrence of Sarcoma going on their observations and examination of a MRI scan. Everything was supposed to be urgent given that liposarcoma is a life threatening illness. Whatever it is, is growing rapidly from the sensation perspective. Life is becoming quite painful and uncomfortable. Even if it is difficult to treat by surgery and radio therapy, there are other possible treatments too. I'll touch on sarcoma treatments in a future post. Likewise I'll post some observations on my history of infection which appears to be pertinent from the symptomatic perspective, as sarcoma has developed concurrently with acute and chronic epididymitis and recurring UTI's in parts of my body affected by these symptoms. (i.e. groin, buttock thigh)

Things are dragging out. It's now eight weeks since I drew attention to the new mass to my GP and six weeks since orthopedics began investigations, and other than an MRI and PET scans nothing else has happened.

I also haven't forgotten the possibility of Hodgkin's Lymphoma due to long term adenopathy. My GP had referred me to a private surgeon to carry out a biopsy for that one. However when I mentioned that to the PAH Orthopedic doctors, they said they would do the whole lot and thus I shelved that referral.

One wonders if I simply have been forgotten. This appeared to occur last year. Orthopedics referred me to oncology, for radiotherapy, when liposarcoma was first detected by biopsy last June. The oncology department re-assured me that orthopedics were monitoring my situation and would advise me of my surgery date accordingly. However when radiotherapy was completed and I had not heard from them they looked up the computer system and there were no appointments or orthopedic monitoring in place. I would have been waiting forever if I had not mentioned it, according to one of the nurses. It's a bit of a concern that there is apparently no monitoring and review system in place by the orthopedics department, other than the outpatients system. Of course they have yet to give me a follow up outpatients appointment either. :( Early next week is the earliest my GP will be available.

Rob

The Waiting Game.......

I'm still waiting to find out what is happening for me medically. The admission for a needle biopsy and CT scan did not happen as originally advised by the Princess Alexandra Hospital doctors. I was told it would probably happen last Tuesday week. The doctors were planning to check out my neck at the same time..... a "one stop shop" as the specialist called it. I did receive a letter advising that I had been placed on an ENT waiting list at Logan Hospital of all places, miles outside of my locality, and will be advised in due course. I did attempt to contact my consultant/surgeon's registrar and left a message with his pager service, last week, but have yet to receive a reply.

If no further news by Tuesday I'll see my GP.

The only event of note to happen in the last 2 weeks has been a PET Scan which took place on Friday. Hopefully that will shed light on my situation.

I'm a bit sore at the moment as one can imagine. Having a large mass in one's backside is not good. I still think there is an element of infection involved, even if there is a sarcoma growing. Adjacent areas have been affected by disease for years as posted previously, and much of the pain and flare-ups sure feel like infection. It sometimes reaches level 7 pain, but then can just as easily disappear altogether leaving mild discomfort. The area of hard tissue continues to grow.... not good :(

I am otherwise ok and am in good spirits and moral. I am having however to rely on superannuation, financially, which is finite unfortunately.... a bit of a worry. I was hoping to return to work in April/May. However with pain, discomfort, possible future treatment and surgery, it's difficult to offer my services to any employer at present.

I'm still working away on my hobbies (though pain is hindering me) and hope to release my Sopwith Snipe aircraft for FSX before any treatment/surgery occurs. I'm not all that optimistic, that I'll make it though, as there is still much work to do.

Life is good and I'm glad to be here.

cheers

Rob.