Cancer Marker CA15.3

Our greatest glory is not in never falling,

but in rising every time we fall.

~ Confucius







My visit to the oncologist was much better than expected.  My cancer marker C15.3 has come down from 78 to 49.  Hooray!!!  Cancer markers are tricky things and individual.  Mine have been quite good in terms of reflecting where my cancer is at.  At it's highest it was 80 and the lowest was 29.  Some people have it in thousands.  My understanding is that it is not the amount per se that is relevant but the trend for the individual person, whether it is going up or down.  Some people don't have the marker and for some it is not a reliable indicator.

There does not seem to be a test that is completely reliable.  PET , MRI, CT scans all have their flaws and usually you need more than one test to check what is going on.  If you have a relatively reliable cancer marker that seems to be very lucky as it is easily checked with a simple blood test.  The scans all contribute more radiation to your body and they are more expensive.  The laboratory in Greece that I sometimes use does do circulating cancer cell counts from a blood sample.  It is controversial as to it's accuracy but in conjunction with other assessments can be quite useful.

Everything else in the blood screen was good.  Liver and kidney function all ok and red and white blood cell counts all good.  The new anti estrogen drug, Fareston, is causing mild problems with skin reactions.  Lots of itchy little blisters with red lumps all over my body.  Mostly arms and legs.  Oncologist thinks it is an allergy reaction so I have started taking antihistamines.  Will see how that goes.  Hopefully some improvement.  At least I am not getting as much pain in my hands and feet although hips and knees are just as sore.  Muscle cramping is about the same, as are the hot flushes, head aches, nausea and constipation.

Generally I am feeling quite good.  Still getting tired enough to need a lie down most afternoons but better than when I was first diagnosed.  Walking the dogs in the park across the road is a highlight in the morning especially when it is sunny.  It is a lovely park with a couple of creeks running through it with little cascades and plenty of trees and shrubs.  It has about a 1 km circuit with some undulations so I also feel like I am getting some exercise.  When I am having a really good day I manage to get around twice.  The dogs love it too.

I have also taken up cross stitch.  When I was visiting my mother I found one in a shop in Hawks Nest with 4 green budgies that appealed and thought I would give it a go.  My mother has been doing cross stitch for 50 years and does some beautiful work.  She has recently made one for me with a buddha on it.  Beautiful.  Never thought I would have the patience for it.  My older sister has done some and enjoyed it but it never appealed to me before.  I am really enjoying it, finding it very soothing.  It requires enough concentration so that other thoughts don't get a chance but not enough to be taxing.  Having cancer really does teach patience and I have had to slow down so much it is now a pleasant hobby.


Surviving and thriving.
Linda

Radiation....

Patience is the ability to let your light shine

after your fuse has blown.

~ Bob Levey

Radiation was daily for 10 days with a weekend off in between.  The treatments were short and not much of a problem other than issues with muscle cramps.  For the treatment I had to lie face down with my head slightly up in a foam support which arched my back slightly.  I then had to put my arms above my head which exaggerated the arch.  I have had problems with muscle cramping in my legs, feet, hands and back (side effect of something I am taking?) and there were a few days when I was having trouble staying in position for the radiation.  The idea is to lie perfectly still once you are in position as the radiation beams are aligned to hit the right spot.  Some days it took a few goes before I could manage that.

Side effects were not what I expected.  No skin burning but my eosophagus was obviously damaged and it became very painful to get food through into my stomach for about two weeks or so after treatment.  Nausea was also a problem from early on in the treatment and now is intermittent, some days are fine other days are not so good.  Not sure now if it is still the after effects of the radiation or if the new anti estrogen drug (Fareston) that I started immediately after radiation finished.

The one side effect I did expect and got was tiredness.  The nausea and tiredness are in any case ongoing problems that I have really had for about 18 months or so, well actually the tiredness has been a problems for about 2 1/2 years.  I am taking so much stuff and it is difficult to know what the cancer is actually doing so that it I can't really pin point the cause of either the nausea or the tiredness.  Is it from treatment I have had or from treatment I am on now or the cancer itself???  I think that more than half the issue with cancer treatment is dealing with side effects rather than the actual cancer symptoms, but who knows.  Oncologists don't seem to want to discuss side effects much other than prescribing more drugs that cause more side effects.  For example, the treatment for nausea causes constipation.  If I then take something for constipation I get cramps and/or diarrhoea.  So I just cope with low grade nausea (no vomiting) so I don't have to deal with constipation etc.  Same with most of the stronger analgesics, they too cause constipation.  Anyone who has had really bad constipation will know how bad that experience can be, and although I am able to give myself enemas, it is a pretty unpleasant experience all round.  So  I manage with just paracetamol which does not have that unpleasant side effect but takes the edge off the pain.

One of the main reasons for radiation to bone metastases, especially in the spine, is for pain control.  In my case it was also necessary to preserve the vertebra as the tumour in T9 was so extensive.  In respect to the pain the treatment has worked.  During the treatment I had reduced pain which returned soon after.  Since then however there has been further reduction in pain.  I am not getting any radiating pain going around the rib cage to the sides and front and the back pain has definitely lessened.  Hopefully that is a sign that the radiation is working.  Half way through the treatment I found out that the treatment is only effective in 70% of cases.  Why can't the oncologists fully inform you prior to treatment.  I would have still gone ahead but the lack of information is frustrating.  It is like getting blood from a stone.  Very little information is volunteered.  If you don't ask the right questions you just don't find things out that may be pertinent.  The problem is I don't always know what the right questions are even though I do a lot of research and participate in breast cancer forums.

Today I had a blood test to check my red & white blood cells, kidney and liver function and to see what the cancer marker CA15.3 is doing.  If it has gone down that would be a really good sign.  If it goes up it doesn't really clarify anything much.  It may mean the cancer is progressing or it may just be that the cancer that was radiated is breaking down and releasing the proteins.  So it makes it difficult to decide on the course of treatment.  I am feeling relatively ok, some days are even quite good and I feel almost 'normal'.  So do I then continue just with what I am on now and risk that the cancer is progessing or do I start chemotherapy and feel like shit for the next 6 months?  Even then that might not work either and then I have lost six months of quality.

Meantime we are planning a little holiday.  On the 3rd April we are renting a campervan and spending 2 weeks on the road.  We are going north along the NSW coast to Byron Bay and then heading inland a bit and coming back down.  Intending to keep a very leisurely pace and look at everything that interests us.  We also have a few friends on the way we will visit and we plan to just chill out.  Never traveled that way before but we both like camping and I imagine this will be a more comfortable camping trip.

Went to visit my mother again in Tea Gardens last weekend and the weather was stunning.  Glorious sunny days and lovely and warm.  Had a picnic lunch by the river, a swim in the bay (someone got bitten by a shark there a few days later - yikes), and iced coffee at our favourite cafe on the water - the Boatshed.  All in all a lovely relaxing time spent.  It was also the first anniversary of my fathers death so it was good to spend that time with my mother.  We had dinner at a restaurant on the river that dad loved going to, nice to remember him enjoying himself.

Now will wait and see what next week at the oncologist brings.

Surviving and thriving

Linda

Cancer Progression

 
The best things in life

are nearest:

breath in your body,

light in your eyes,

flowers at your feet,

the right path before you.

~ Robert Louis Stevenson

It is amazing what a difference a few weeks makes.  It has been tough and stressful.  The PET/CT scan I had on Febuary 1 was really bad news.  5 more new tumours and the tumour in vertebra T9 was now taking up most of the vertebral body and T11 now also had a tumour.  I panicked.  My great fear was that the structural integrity of the vertebra T9 was compromised and could fracture or collapse at any moment.  Worse case scenario was paraplegia.  Yikes.  Had an MRI on the 3rd, saw the oncologist on the 8th and had a more detailed CT of the spine on 10th.  All to be assessed by a  radiolgy intervention specialist to see if vertebroplasty (pumping of 'cement' into the bone to give it support) was an option.  Also saw a surgeon that day to assess possible stabilisation of the spine with steel rods if cementing was not possible or not enough.  It was a really scary week.  I felt I was walking on eggshells and worried that any sudden movement or jarring could mean collapse of the vertebra and paraplegia.  It was pretty hard to stay positive.

The good news was that the tumour in the vertebra was a mixed lytic and sclerotic tumour.  The sclerosis means that there is strong bone within the tumour and in this case enough of it that imminent collapse was very unlikely.  It also meant that vertebroplasty was not an option.  No horse riding or bunjy jumping, but otherwise ok.  Phew!!  Surgeon said there was more chance of becoming paraplegic with the surgery than from the tumour at this stage.  In other words very low risk. Back pain was increasing and radiating around the ribs to the front of the chest and I am sure the stress didn't help with that.  The rapid progression of the cancer was still scary but I didn't feel as panicked.

So, I still needed to deal fairly quickly with the spinal issues and also with the cancer progressing so quickly generally.  The Aromasin obviously wasn't working.  More visits to oncologists.  Included this time was a radiation oncologist as well as my chemo oncologist.  Now the plan is that I have radiation treatment on the spine from vertebra T8 to T11 starting today.  I will get 10 treatments, one a day, except weekends.  As breast cancer metastases are relatively sensitive to radiation a fairly low dose of 30 Gy is used so there should be minimal damage to surrounding tissue - main concern is the spinal chord of course which lies right next to the vertebral body where the tumour is.  Fortunately, these days, the radiation is beamed from different angles and only where the beams converge do you get the full dose.  This also helps protect surrounding tissue although I may get some effects to intestine and liver.  May also get some burns on the skin.   Hopefully no lasting damage to spinal chord which apparently copes well with that level of radiation. I will start a new hormonal drug, Farestin, as soon as I finish the radiation.  This is again an estrogen suppressor but works on a different pathway to the 3 previous hormonal drugs I have been on which were all aromatase inhibitors.  This is a pure anti estrogen.

Treatment progress will be monitored.  I will also have a blood test for the cancer marker, CA15.3, three weeks post radiation and revisit the chemo oncologist then.  The last CA15.3 was increased again to 78.  Some people have the marker well into the thousands but it is a relative and individual thing. The highest level I have had was when I was first diagnosed at 80.  I have had it as low as 29.  It is going up at more that 10 a month.  The results in 5 weeks will determine what other treatment I may need.  Chemotherapy will be an option then.  The reluctance with that is that I am feeling physically pretty good.  Chemo would be longer term (average is 4 months) and will make me sick.  If the new hormone treatment can hold the cancer and stop progression it may be better to just leave it and keep the chemotherapy for later problems if they occur.  There is also a limit as to how much chemotherapy the body can tolerate over time.  Unfortunately no brakes on the cancer spread while having the radiation to deal with the spine.

So, I am trying to enjoy my physical well being such as it is. The radiation should resolve the back and chest pain issues.  Now that I have a treatment plan I feel like I can get back to a more normal life.  I am very lucky that the radiation can be done at a new hospital 5 minutes away so that should have minimal impact on my daily activities.  I have not returned to Tai Chi.  A combination of the back pain and being too busy with appointments and research to get there.  Dog walking also suffered and I am just getting back into that the last couple of days.  I did spend a lovely couple of days visiting my mother at Tea Gardens in between appointments.  Also bought a portable zero gravity chair to help take the weight off my spine. Very comfortable.

Surviving and thriving

Linda

Overcoming Setbacks

                                                                                       
In overcoming fear and sharing    

our stories with others, 
we find the truth about who we really are 
- and discover that we are not alone.

~Lisa Hammond








Good grief, can't believe how many months have passed since my last entry.  My scan results in October really did hit me hard, emotionally.  Also my monthly CA15.3 (breast cancer marker via blood test)  has been increasing every month since then which hasn't helped my demeanor.   I am coming good though, despite the results.  My energy levels have been very good compared to the last couple of years.  I can manage a lot more and though I still get pretty tired in the afternoons, I am managing  a lot more physical activity.  Getting back into some gardening which I really enjoy and that helps lift my spirits.  Tai Chi classes have been on summer break but start again soon and I am looking forward to returning.  Managing more walks with the dogs in the bush.

Treatment has not changed very much.  I have started a different estrogen suppression drug, Aromasin instead of Arimidex.  This has not stopped the increase in the cancer marker but apparently it can take a while to get going.  I have  increased the amount of Haelan  intake and have added low dose Naltrexone once nightly (between 2am and 4 am).  I have stopped chelation for mercury as it was not making any difference and the infusions of EDTA were making me feel pretty sick on the days I did them.    So now I do twice weekly infusions of 30g vitamin C and glutathion.  Also twice a week intramuscular injections of Artesunate, once weekly subcutaneous injection of Polyerga.  Coffee enemas twice a week - a different kind of long black.  My tablet intake is down to 77 per day.

Main physical problems day to day are side effects of some of the drugs.  Muscle cramping, joint pain, particularly hands and feet.  Feet hurt mostly when I first get up and it is difficult to stand.  That passes pretty quickly.  Hands are sore most of the time.  Insomnia seemed to be under control for a while, which I assumed was the thalidomide overriding the other drugs.  Last few weeks insomnia is back so I have been up a lot during the night.  Not affecting my energy levels too much so far.  Weight gain is also a problem with about 1kg going on a month.  I have gained 11 kg since last January.  Now getting very serious about stopping that trend.  Hard when two of the drugs I take increase appetite and seem to increase deposition of fat despite increase physical exercise.  Mainly reducing carbohydrate intake at night and eating smaller portions.  I am doing as much exercise as I can manage.  Have had some back pain but do not think it is the tumour in my spine unless it is referred pain.  Get some discomfort in my armpit  most days but it is not debilitating.  Only occasionally does it get more severe and feels like some one has stuck a knife in my side.  Muscle cramping was severe for a couple of months but somewhat better now.  Again mostly affecting hands and feet but also legs and back.  Quality of life generally is really pretty good.

Emotionally have been trying to stay positive and enjoy my level of wellbeing and life in general.  Counting my blessings so to speak.  Mostly I am pretty good although struggled a bit for some weeks last year after my scan results.  Have had a few lovely holidays.  Went to the Blue Mountains west of Sydney and to Cairns, up north, with my mother, sister and a family of my sister's friends from the USA.  Had a great time and the weather was perfect.  Right between rainy periods and certainly no floods in sight when we went late October.  Spent three weeks at Hawks Nest in December/January.  We had a lovely Christmas with my mother, sister, brother in law and my niece, Alison.  Most enjoyable.  We had rented a house that allowed dogs and it was pretty comfortable and within walking distance to the river where we could watch dolphins coming in from the bay.  Didn't spend a lot of time at the beach as it was often quite windy but still had a very relaxing time.  We spent last weekend in the Blue Mountains.  Managed to rent a cottage that allowed our three dogs, last minute, spur of the moment thing and again were very lucky with the weather.  A friend who lives up there took us on a lovely bush walk with stunning waterfalls where we could take the dogs.  Four people and five dogs all having a great time.

Australia Day was this week and we invited four friends around for a fish barbeque lunch.  It was a very hot day and we all ended up in the pool.  It was a relaxing and enjoyable time despite the personal difficulties several of us are having.  That seems to be the trick.  Living in the moment and enjoying what we have around us at any one time, not worrying about what might happen tomorrow and being truly grateful for what we have today.

Having said that.... my next scan is next Tuesday,  a blood test for the cancer marker on Friday and a visit to the oncologist the following Tuesday to reassess treatment based on the results.  Meantime I feel inspired to catch up on maintenance around the house and garden that has been somewhat neglected.  That helps keep me in the moment and gives me a lot of satisfaction in seeing the results of my efforts.

 



I still feel my motto is relevant

Survive and thrive!
Linda

Cancer Setbacks

Both optimists and pessimists 
contribute to our society.

The optimist invents the airplane 
the pessimist the parachute.

~Gil Stern






We are just back from a lovely holiday in New Zealand.  Went to Rotorua on the North Island and was not expecting that much as I thought the South Island was the one with spectacular scenery.  Heard that Rotorua was very smelly with sulphur fumes from the volcanic activity.  Sometimes it is good to have low expectations as it turned out to be very scenic with minimal bad odour.  We had a few days of rain which gave us time to laze about and read our books.  The rest of the time we went sight seeing.

Who knew that there was snow in the North Island in October (or at all for that matter).  We visited two ski fields where there was still enough snow for people to be skiing just south of Lake Tapau on Mt Ruapehu.  Very scenic.  The countryside is incredibly green, testament to lots of rain.  We saw why New Zealand is known for it's sheep, they were everywhere and there were lots of spring lambs gamboling about.  Friesian dairy cattle were also a common site as well as acres of plantation pines.

Closer to Rotorua we found a Californian redwood forest planted in 1909. Although not as big as the redwoods we had seen in California they  were pretty nonetheless quite impressive and a joy to walk amongst.

There was a major volcanic eruption in the area in 1886 and we visited the archeological site of a 'buried village' that had been excavated.  This gave us a bit of a taste of Moari culture.  A performance at Whakarewarewa by some traditional Moari singers and performers was also impressive.  As was the Pohutu Geyser which erupts several times an hour and goes for at least 5 minutes at a time shooting upabout 20 metres.  Certainly plenty of rotten egg smell at that site.

There were lots of lovely lakes and plenty of geothermal activity with geysers, boiling mud pools, fumeroles and the like reminiscent of Yellowstone National Park in the US.  Our apartment was on Rotorua Lake a little way out of town and very pretty.  Lots of black swans about, some with goslings, and the fly fishing season had just started so lots of fisherman around (not many fish being caught).  It was easy to get around in our little rental car with good roads and not much traffic.  Apart from the rain the weather was fabulous and warmer than expected.  All in all a very nice holiday and my energy levels were great.  Managed some quite long walks of upto an hour.

There is plenty of water in the area with lots of lakes, streams, waterfalls and springs.  The clarity of the water in places is incredible.  Humarana Springs at the north end of Rotorua Lake was particularly stunning.  There were some redwoods there as well, planted in 1916, but it was the springs themselves and the resulting streams that were magical.  I have never seen water so clear, not even in Kakadu.  Lots of water birds, some trout and the beauty of nature at its best.  Simply glorious.  That was on our last day there, great way to spend the morning.

Came back on the 5th October and had PET scan on the 6th.  Unfortunately not good news.  I now have two visible tumours.  One in a vertebra at T9, where I have had one before, and one in a lymph node in my right armpit.    I was hoping to be able to say I had been clear for twelve months. Alas not so.  The irony is that I am just starting to feel a lot better and was hoping the treatments could be reduced.  Instead I am looking at increased treatment and possible deterioration in physical wellbeing. Very disappointed doesn't really cover it. No doubt I will rally around as usual but at the moment I feel a bit overwhelmed.  I have emailed my doctor in Germany and waiting for a reply to see what the plan of action will be.  Some trepidation there but I do better when I have a plan to follow.


Survive and thrive

Linda

Troughs and Valleys

Life is about falling.   

Living is about getting back up.  

It's been a tough few weeks.  Firstly the surgery on my port was not successful so had to go back in to have a new port put in on the other side and have the old one removed.  What was to be a simple procedure became a bit more complicated.  The tube from the new port was inserted into the external jugular vein and then was to be pushed down to close to the heart.  Unfortunately there was a stricture in the vein and the doctor had a lot of trouble threading the tube through - turned into a much longer and somewhat brutal procedure.  The old port on the right side had a lot of scar tissue around it with adhesions so it too was not a quick simple procedure to get it out but took quite a bit of digging.  I also had a bad head cold at the time so felt pretty miserable.

Recovery over the next days seemed to go ok.  My neck was very sore and it was painful to swallow but otherwise no problems.  Then I started to get some pain on the left side of my chest.  Just intermittent and not too bad.  By Tuesday night however it was very painful and continuous and difficult to take a breath.  As it was getting worse started to worry that it may be a blood clot from the port surgery causing problems or a new tumour in a rib.  Spent the next 36 hours in a morphine haze in hospital and had x-rays and a CT scan.  Nothing showed up which I guess was a good thing.  No sign of tumours and no blood clots in the lungs.   A small change in the bone density of my sternum showed up but was non diagnostic.  I have had a tumour in the sternum higher up so this could be the start or a new one and could be causing referred pain to the ribs.  The lesion does not look like a tumour, so I am optimistic.  I am due for a PET scan soon anyway so that should clear up whether it is or not.  By Friday I was a lot better even without morphine and I went home.  Pain has been slowly getting better until this morning when it is worse again.  Back on pain relief and wait and see regime.

Had a lovely time in the garden a couple of days ago.  the weather was fabulous, sunny and warm and I replaced a few little plants where a few had died in the front garden.  There are some beautiful flowers in the garden at the moment and I spent quite a bit of the afternoon sitting in the garden just enjoying it.  It has been raining ever since but it looks like the weather is clearing again and the sun is coming out.  So like the weather my health keeps changing.  It goes into troughs and it may be a bit of a climb out, but I do seem to come out on top again each time.

Went to the doctor again yesterday mainly to discuss the continuing lethargy and some chest discomfort, unrelated to the pain in the rib area.  So I have a referral to a cardiologist and also need to have some more blood tests just to check things like thyroid function.  It is probably just a side effect of the Thalidomide and Arimidex both of which cause lethargy along with their other side effects.  I just want to make sure that there are no other issues to deal with.  My body has been through some tough stuff and there is a family history of heart disease.

It is going to be a busy few months ahead with doctors appointments, tests and scans and some really nice stuff like a a few days down the south coast with a lovely friend,  a week in New Zealand and then my sister and brother in law coming over for a visit and we are all going up to Cairns for 5 days.  As well as that Spring is in the air!!  Looking forward to some warmth and sunshine and watching the garden grow.  Hopefully I will be well enough again soon to walk the dogs in the bush as the flowers at this time of the year are pretty spectacular.

Hopefully on the upward bounce again and in any case surviving and thriving.

Linda

Magnetism

Let us always meet each other

with a smile,

for the smile

is the beginning of love.

~Mother Teresa




Must have got a taste for outings after going to Noosa.  We decided we wanted a long weekend  away and were going to go on a road trip to Lightening  Ridge which is in the north of  NSW.  The plan was to leave Friday morning and come back Monday.  Then Glen was watching the weather report on Thursday evening and noticed that it was 28C in Townsville.  We weren't enjoying the unusually cold winter (for Sydney) and decided to go there instead. So booked flights and accommodation for Magnetic Island, which lies just off the coast of Townsville in Queensland, late on Thursday and flew out Friday morning.  Great spontaneous choice!  We had a fabulous warm and sunny weekend.  Glen has a cousin living on Magnetic Island so we caught up with him and his partner.  Coincidentally I have a cousin living in Townsville who I had seen about once in the last 45 years and that was about 20 years ago, so we caught up with her on the Monday as well.  So it was all good.

Magnetic Island is situated in North Queensland's renowned Great Barrier Reef region about 8 km out from Townsville, a pleasant ferry ride.  The majority of the island is national park and there are about 2000 inhabitants.  It features spectacular natural landscapes and seascapes including granite boulder-strewn headlands, hoop pines, sandy beaches and fringing coral reefs.  One of the highlights was walking to Balding Bay which can only be reached on foot or by boat.  The walk was pretty strenuous but definitely worth the effort, the small bay was stunning and the water warm enough even for me to have a swim.  The apartment we rented was right on the water and we saw several turtles surfacing.  On one walk up to some old world war II relics and stunning views we saw 4 koalas, delightful.  The rent of the apartment included the use of a little convertible Golf car so we zoomed around in that.  What a fabulous weekend.


We arrived home on the Monday and I had missed an infusion on the Friday, so back to it on Tuesday.  I was feeling particularly woossie and put the needle into the port through a little crater in the skin that was basically scar tissue from the long term needle placement in Germany.  I don't usually use that point but it has the advantage of not having any sensation left.  Unfortunately I had a bad reaction as I think the skin at the bottom of the little crater had gone and left the port exposed to the open air and the disinfectant.  Not sure if it got infected or just inflamed but it was very unpleasant.  I started on some antibiotics but by Friday decided I needed to get it fixed.  So this morning I was back in St Vincents Hospital, where I had the port put in last year, for some surgical repairs.  The doctor really wanted to replace the port and put a new one in in a different spot but I convinced him to try and just repair the skin by excising the little crater.  Hopefully it will all work out.  In any case I am home now and have taken some pain relief medication as the local anaesthetic has worn off.  At least I will have another little break from infusions this week and I plan to go visit my mother at Tea Gardens.
 
Had my regular blood tests and all is fine, kidneys & liver functioning well, blood counts all good and Tumour Marker reasonably low at 29 (started at 80).  Still need to get my mercury levels rechecked.  Then in September/October another scan and more blood tests for Greece.

Looking forward to Spring's warmer weather and longer days.

Surviving and thriving.
Linda