Radiation and more

Look for the beauty in life, in people, nature 

and most of all in yourself.

~Lee (BCNA) 

 Even though we are still having some cold days, mostly the weather is warmer and certainly drier.  I am really enjoying the garden and the park across the road.  I have a white waratah in the garden that is flowering (see picture above), the Kangaroo Paws are flowering even better than when I last wrote and there are even some red and green ones that I thought had died that have come up to say hi.

The morning walk with the dogs brings me a lot of happiness.  They really know how to enjoy themselves, such happy, enthusiastic little beings.   We took them up to the Blue Mountains for the day (that's two weeks in a row) and were again blessed with wonderful weather.  The dogs were thoroughly delighted with the new smells, certainly a lot more than the view that we humans were so entranced with.

Last weekend I went to Tea Gardens again for a few days  in between radiation treatments to visit my mother.  The beauty about that area is that it is not yet overdeveloped and has a river,  stunning bay and ocean beaches with lakes and national park nearby.  It is wonderfully quiet compared to Sydney but still has some lovely cafes along the water.  Great variety of birds and can hear a different  frogs at night.  The only ones we get at are the Common Marsh frog which sounds like a dripping tap.  Get some different sounds in the park.


Finished the radiation treatment and the predictions of effects are coming true.  Very red nose and surrounding area, severe ulceration of upper gum and inside upper lip as well as the inside of my nose is very painful and crusty and bleeding intermittently.  Using aloe vera liberally plus saline nose washes and various other concoctions up the nose and under my lip.  Nights are the hardest.  Another week or so of symptoms and things should start to improve. 

On Tuesday I saw the radiation oncologist, my usual oncologist who directs the chemo and my 'alternative' holistic GP.   The radiation oncologist said all was going as expected and to see him in a 6 months for the bcc unless I was worried.  My regular oncologist was about the same i.e. playing the waiting game. The previous week I had  a blood test to recheck CA15.3 and much to my consternation it was now 177.  Scary!  Now it could be skewed by the radiation treatment and the inflammation that has caused, so retest in a month and reassess then.  I went off the thalidomide on the 2nd of September to see if it helped with the peripheral neuropathy and I am due to go back on it at the end of the month.  There appears to be no alternative to the thalidomide (for antiangiogenesis) other than maybe avastin, which is an iv drug that I have been on before and it gave me very bad gastritis, so bad in fact that I was hospitalised.  Don't really want to use that again.  It would also mean having the infusions at a clinic as I would be unable to buy the drug and do the infusion myself. 

The GP came up with a good plan for working out the nausea.  He thinks it is gastritis and likely  due to one or more of the supplements I am taking or just the large volume of tablets (now up to 88 per day).  As more side effects start to develop from the anti cancer drugs additional supplements get added to try and counteract those effects.  That is on top of the various supplements that are 'anti cancer', immune boosters or supportive for various other body organs or functions.  Part of the plan is to not take any tablets other than Fareston for a few days, take slippery elm and when nausea subsides we have worked out a 4 stage re-introduction of the other tablets.  Can't do it one by one as it would take too long.

This week I am going to take it easy and let my face recover from the radiation.  Next week we are going to the Blue Mountains with the dogs for a full week.  Fantastic!

Surviving and thriving

Linda

Cancer Progress

Don't wait until you have no more suffering before allowing yourself to be happy.

~ Thich Nhat Hanh

I like this quote as life seems to be full of suffering but we don't have to focus on it exclusively.  It reminds me of what I used to tell myself when I was still working that I couldn't wait to have holidays or enjoy myself and take time off until I retired because I might not get to retirement, or I might not be well in retirement.  Well that certainly turned out to be true.  However, despite the difficulties and challenges that life seems to throw at me I do still have times of enjoyment, contentment and happiness.  Sometimes it takes effort and I think it is a skill that I can develop more.  Certainly the Mindfulness Based Stress Reduction course I am doing is helping.  Basically it is mindfulness meditation which is like mind training to be more fully in the present and be able to change focus and access the deep calm that is within.  We did a lovely meditation in the last class called the Lake Meditaton.  It is a meditation where you imagine a lake and observe the changes on the surface with changing weather conditions, times of day etc.  The beauty is that whatever is going on on the surface the depths remain calm.  It is not that there is nothing happening below the surface, there can be plenty happening but it is relatively calm.  I find it a great metaphor for the mental and emotional upheavals of day to day life.  Hopefully with more practice I will be able to access the still calm waters more often.
 

When my cancer marker was rising at about 8 points per month to reach 68 I was getting a little worried.  Nothing compared to the panic when at the last test it went to 106.   Somewhat reassured by follow up bone scan and CT scan.  Checked everything except my brain and everything seems to be pretty stable with just some activity in the tumours in my pelvis.  It is unlikely that I have tumour(s) developing in my brain as I have no neurological symptoms related to the brain, just the usual 'chemobrain' stuff.  The cancer markers can be unreliable and can be affected by inflammation.  I did have a very bad cold when the blood test was done so I am hoping that is all it is.  I am due for another blood test in a couple of weeks.

Symptom wise it has been a rough month or so.  Apart from the cold I have had severe nausea.  I started a couple of new supplements to try and alleviate some of the side effects of the Fareston and Thalidomide, particularly the peripheral neuropathy as walking is becoming more difficult and the neuropathy is starting in my right hand,  but had to stop them as I was just too sick.  Now I am trying to work out which particular supplement is causing the nausea and general malaise.  This morning I started back on one of the supplements and did get a little nauseous but only for a couple of hours.  Will take it again tomorrow and then reassess.

My doctor in Germany also suggested I start intramuscular injections of methylcobalamin intramuscular twice a week.  I already have twice weekly intramuscular injections of artesunate.  This poses a bit of a dilemma as those who know me might remember that I do not have well developed buttock muscles or leg muscles for that matter.  In any case I have started doing the methylcobalamin into my leg muscles and continue with the artesunate into my backside.  A pity they can't be given intravenously with my twice weekly infusions but ce la vie.

Cancer wise I feel like I have become a bit of a cancer magnet.  Since I was diagnosed with stage 4 breast cancer I have  also developed a malignant melanoma (surgically removed) and now have a basal cell carcinoma on my nose which is so extensive it needs radiation treatment.  The reason I did not really notice its development was that the area became a little red when I switched hormone treatments to Fareston after my spinal radiation treatment in February.  This drug caused a whole range of skin changes with lots of little blisters, red spots and itchiness.  It was only when the only area left with any change was that on my nose did I decide to get it checked out.  The surgical option was to remove it and take a skin graft from my neck and put it on my nose.  I didn't really like that option so have gone for the radiation instead.  It seems I can expect skin burning and blistering as though I have a really bad sunburn and the inside of my nose will ulcerate, bleed, crust and be generally very painful.  Something to look forward to!  At least it is only a matter of months and it should all settle down again.  If it doesn't work I can still have the surgery.  I have already found a few sources of Aloe Vera plant  which I intend to use liberally and hope it is not as bad as predicted.  I should be fine for the first week of treatment which is daily 5 days a week for 15 treatments.  I am extremely lucky that the hospital is really close so it won't take up much of the day.


The weather today is stunning.  There has been so much cold and rainy weather this winter it is lovely to see blue sky and sunshine and feel a bit of warmth.  The garden has already gone into Spring mode with lots of flowers.  Plenty of Fresias with their delicate sweet aroma wafting all through the front garden. The Kangaroo paws are coming up, the flannel flowers are in bud, the azaleas are looking lovely and the Geraldton Wax I planted last year looks beautiful. Life is good.


Survive & thrive

Linda

Treatment Side Effects

Don't save anything for a special occasion.

Being alive is a special occasion.

~ anonymous



It is 10 am and I am still in bed.  Usually I get up by 7am do some yoga and meditate then shower and have breakfast followed by a lovely walk in the park with the dogs.  Today I have a very bad head cold with lots of coughing and snuffling, well not so bad now after dosing up with flu tablets.  I took those tablets yesterday as well and it made me realize how much pain I usually put up with during the day.  The flu tablets contain an analgesic and it is really making me feel much more comfortable.  Normally I only take pain relief medication at night so I can sleep, during the day I just try and distract myself from the discomfort.  Today I will write a bit about side effects, but first a little update on other things.

My sister came over from the US for two weeks which was great, lovely to spend time with her.  We spent some time with our mother and did some fun day trips including whale watching just outside Sydney Harbour.  It was a perfect sunny winters day with incredibly calm seas.  We saw several pods of Humpback Whales, none breached but one rolled on its back and waved its flippers in the air.   It was a fabulous afternoon.  My sister returned to the US on the 5th July.  It is always emotional saying goodbye.  Have just come back from a few days on Magnetic Island.  We were both very tired so it was nice to go somewhere warm, quiet and easy.  Even had a swim in the ocean at a lovely little beach even though the water was very cold.  Also found a couple of places that made fresh vegetable juices and healthy lunches.  Still came back with a cold though.  Probably caught off someone on the plane on the way up to the Island.

As far as my cancer and the last scan goes I did go and see the radiation oncologist who viewed the scans and the report and decided that the active tumours were in the collar bone and on the rim of the ilium (pelvis).  The rest just seems to be arthritis.  This would seem to indicate that current treatment is holding the cancer in check reasonably well.  Cancer markers are continuing to increase, last month up to 68.  I will have another test in the next few days and I have an appointment with the oncologist next week.

So, at the moment I am concentrating on continuing with current medication and dealing with the side effects.  The peripheral neuropathy is getting worse and is affecting my legs up to my knees with the feet badly affected.  It is becoming hard to balance on uneven ground and my feet get very sore if I walk any distance or if I am on my feet for a long time.  It is weird how my feet can feel numb and painful at the same time.  Muscle cramps are continuing although they do seem to be a bit better since trying a new, and very strange,  remedy - a cake of soap in the bed at night.  I have no idea if the improvement is coincidence or real but it is a great relief not to be leaping up out of bed with severe and painful muscle cramps at regular intervals during the night.  I get up and stretch my calves only to have the front muscles cramp.  I also have cramps in my feet, hand and different parts of my back and neck.  I have to be careful about twisting my back or neck as it can cause severe muscle spasm.  Most mornings I do some yoga to try and stretch the tight muscles but it can exacerbate some of the cramping on the opposite side to the one I am stretching.  I think overall the yoga does help.  Joint pain is an ongoing problem particularly hands, hips and knees.  Then there are general aches and pains throughout my body.  Headaches are generally mild and of short duration.  My eyesight is getting worse, possibly the cataract I am developing as a side effect of the hormone treatment.  I don't think my mind is as sharp as it was either but not sure if that has anything to do with the drugs.  General lethargy continues to be a problem probably a side effect of the thalidomide, at least it helps me sleep.  I still get pain in my back where I had radiation on two tumours in the spine from time to time.  I suppose that is the bone still healing (I hope).

Next on the agenda is to see what the cancer marker is doing and to see the oncologist and reassess current treatment and timetable the next scan/test.  Meantime I have just started a new supplement that is supposed to help heal the damaged nerves and alleviate the peripheral neuropathy.  As this is starting to cause some disability  I will also discuss this problem with the oncologist.  It seems to be related to when I started the hormone treatment, Fareston.  It could be a cumulative effect as it is also a side effect of the thalidomide and zometa that I take.  The alpha lipoic acid and p-5-p don't seem to have helped.

I have started a course on Mindfulness which runs over 8 weeks which I am hoping will help me be more in the present and worry less about the future.  The homework for that at present is body scan meditation which I often do anyway.  I am already a lot better about enjoying day to day activities and the little things in life.  Funny how a life threatening illness can do that for you.  I am really enjoying doing my cross stitch embroidery.  It is very relaxing and keeps me in the moment while creating something I like.  It is also physically manageable, just the odd cramp in my hands.

Despite the cancer and the side effects I am in pretty good shape.  The 3 year anniversary of my diagnosis has passed and I am still here, that's already a year past the original prognosis.


Surviving and thriving

Linda

CA15.3 and more

If there is no wind, row.

~ Latin Proverb









Cancer marker CA15.3 has continued to rise and is now up to 60.  This has been rather disconcerting so I had a CT and bone scan to get a better picture of what is going on.  The good news is that there is no cancer in the liver and lungs.  The bad news is that there may be new tumours in the sternum and sacrum.  Both of these are at the joints i.e. at the join of the right clavicle with the sternum joint and right sacroiliac joint.  This makes it hard to differentiate it from arthritis which is showing up on both sides at these joints.  No pain in these areas at this stage.  No change in treatment either.  This is good as I am feeling reasonably well and chemo would have made me feel sick for quite some time.  There is also a limit to how much chemo is given over a lifetime and this means it can be held in reserve if it is needed later.

On recommendation of one of my doctors I had a break from most of my tablets (10 instead of 84) for a few days.  I actually had more energy on those days.  Not sure if that is coincidence or not.  Will have another break in a few weeks and see if I get the same result.  I have contemplated and have discussed reducing my tablet intake with the doctor but it is hard to know which ones to stop.  It is impossible to know which are helping and which aren't.  Maybe they all help but maybe I don't need them to stay healthy.  I have actually increased the tablet intake by adding alpha lipoic acid which is supposed to help with the peripheral neuropathy.  There does seem to be some slight improvement but I will see how it goes over the next few weeks.  It does seem to be a side effect of the thalidomide and basically means the sensory nerves to my feet, and occasionally my fingers, are firing off.  This gives a combination of numbness and hypersensitivity, which seems contradictory but occurs nonetheless.  I am reluctant to reduce the dose of thalidomide at this stage.

I am managing to do my yoga and meditation each morning and walk the dogs, weather permitting.  I have improved my diet a bit again with increased vegetable juice and raw vegetables.  I am hoping that will increase my energy levels.  Weight gain continues to be a problem with it being a side effect of two of the drugs I am taking even though I have reduced my food intake.  Just when I had discarded all my 'fat clothes'.  

Went to Melbourne and saw the Tutankhamun exhibition, it was fantastic.  The craftmanship of the statues and jewellery was amazing.  Beautiful.

So it is steady as she goes, monitoring continuing with CA15.3 over the next couple of months and enjoying life as much as possible.

Surviving and thriving

Linda

More on CA15.3

 

 Perseverance is not a long race; 

 it is many short races one after another.

~ Walter Elliott






The last cancer marker result was disappointing.  It has gone back up to 52.  This is not much of an increase from 49 but 49 is already a bit high.  That result was from blood taken on 5th April.  I will get another one done next week and will be seeing the oncologist on Friday 13th, hopefully it will be a lucky day and the cancer marker will be going down again.  If not I will need to reasses treatment options.  Have had a blood test to be sent to Greece for a cancer cell count.  Ideally I would like to get this done more regularly but it is very expensive.  There is not really any one test that is definitive for where the cancer is at so a combination of non invasive and non radiation type tests seem to be the way to go.  The PET, CT and MRI's all use radiation so want to minimize those when possible.

Symptom wise nothing much has changed other than increased nausea.  Not sure if it is the side effects of medication or just too many tablets for my stomach to deal with or cancer progression.  Joint pain continues, muscle cramping is somewhat under control with large doses of magnesium.  Energy levels are not too bad, managing to walk twice around the park with dogs but still pretty tired in the afternoons.  Toes and end part of feet are still a weird combination of numb and hypersensitive.  Hot flushes preceded by adrenalin rushes (anxiety) continue but are not debilitating other than waking me up during the night.  Back pain is intermittent but not radiating around the chest.  Morning yoga is helping with lower back pain and eases the cramped muscles in my legs and back. Haven't seen the Xray report yet but the Xrays of my spine look ok to me other than possibly some compression of T9.  Will get the report when I see the oncologist.

I have had a thermography done.  This is a non invasive scan of the body which picks up soft tissue inflammation by detecting and mapping temperature variations on the skin.  Can pick up soft tissue tumours (e.g. liver) but not any use for bony lesions.  Thought it might be a good way to keep an eye on progression.  Also trying a few other alternative treatments.  One is a electro-dermal screening mechanism which works on detecting out-of-balance meridians and then tries to re-balance them.   Have made an appointment with an Intuitive healer who includes Reiki and psychology.  It would be good to be able to reduce the side effects of the cancer and medications so that my quality of life is the best it can be. 

We had a wonderful 2 weeks holiday in the rented campervan.  It was a slow trip up the coast to Byron Bay and down again.  We were going to go inland and back down but it was so lovely at Bryron Bay we ended up staying there and enjoying the warm weather and ocean.  Saw some lovely spots on the way up, highlights were Harrington, South West Rocks, Queens Lake and Iluka.  We were very lucky with the weather considering how much rain there has been.  Had rain first few days but it always seemed to clear up for a lunch stop and the rest of the holiday was lovely and sunny and warm until the last day when the rain returned.  Would definitely rent a van again although we will try a smaller one next time and see how that goes.  I would like to try a caravan as well.


 

I am having some overdue maintenance done at home by a handyman.  I kept thinking I would get well enough to do it myself but 3 years later it is just not happening so I am getting someone else to do it.  Just had tree loppers in yesterday to prune some trees and remove a tree that had come down in a storm.  Gearing up to get some paving done on the back patio as well.  I will concentrate on doing some gardening, that is about all I can manage.  At least I am still above ground and my quality of life is pretty good really so I am grateful for that.

Surviving and thriving

Linda

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