Abraxane Chemo and on to Germany

Worry is the darkroom in which negatives are developed.

~ church billboard in Colorado




The Abraxane treatment did not go as well as I had hoped, got very sick after the last treatment.  Was pretty well bed ridden for 8 days then started to improve.  Lost a lot of hair in the process.  My stamina and ability to go for a walk has also diminished.  It also meant that getting ready for the trip to Germany was a bit more pressured as things got left to the last minute and squeezed in between my usual infusions, coffee enemas and saunas.  Came across the photo of the cat sleeping when I was spending a lot of time in bed and felt very in tune with the comments,  I was very busy at a cellular level.  Great photo and comment for anyone going through chemo or serious disease or treatment.  Brings a smile to my face every time I see it. It's always good to see the humour.

The other problem with the Abraxane is that it does not seem to have been that successful.  Although it is guess work at the moment.  Certainly the pain has reduced but the cancer markers which reached 1554 have only come down to 1120.  The oncologist said this can be a good thing as ones that come down very quickly do not necessarily stay down.  Not sure if this is true or he is just trying to reassure me.

We are now in Germany.  The flights were uneventful but tiring.  We had plane changes in Bangkok and Madrid which went smoothly.  We had booked a hotel at the airport because there is also a train station right there and thought it would be good to get a night's sleep before the train journey to the clinic.  We were certainly glad we did that.  Gave us a chance to start to get the time difference under control and to rest.  Also got the train tickets the afternoon we arrived so knew when we needed to leave and found a nice little restaurant that served yummy broccoli soup and also we could choose our own ingredients in the morning for breakfast and a take away lunch.  Much cheaper than eating in the hotel.

The train trip was fine other than having to change trains twice. Not much wait between trains but a bit of a pain with the luggage.  The trip lasted about 2 1/2 hours and the last 1 1/2 hours in the same train was very nice.  The train had very big windows and after traveling through some nice flat country side with intermittent villages we headed into the hills and up into the Schwarzwald.  Often there would be mountain streams we followed and lovely little villages with typical old German buildings.  We caught a taxi from Freudenstadt to Hallwangen and our apartment.  The apartment is a flat beneath a house where the owners live.  It is quite a common method of holiday accommodation in smaller tourist areas in Germany it seems.  Generally cheaper than hotels and it means you can do your own meals which is a big saving and allows a healthier diet.  The apartment is lovely with a loungeroom, kitchen/dining, bedroom and bathroom.  All rooms except the bathroom face south onto the garden and we get the sun coming in when it shines. The owners are very nice,  friendly and helpful.

Hallwangen is up on a hill overlooking a valley which is quite pretty except for an ugly factory in one spot.  I guess it is good for employment in the area.  We can see Dornstetten and Freudenstadt in the distance but mostly verdant meadows and some patches of forest.  The clinic is right next to the forest and I am hoping to be well enough to do some walking in these beautiful pine woods.  The weather is colder than we expected 3C to 12C  degrees and today the wind has sprung up to make it feel colder.  There has been rain forecast for the time we have been here but we have only had some today although it has looked very threatening at times.  We have had some sunny periods and the spring bulbs are flowering in the gardens we pass on our walk to the clinic.  Tulips, mostly red and yellow, daffodils and hyacinths as well as pansies and other flowers I don't know the name of, very pretty in any case.

After unpacking on the 18th we headed to the clinic and met the doctor on duty who is Australian with a German background so fluent in both languages.  Really nice doctor who seems to be very competent.  My usual doctor is in Dusseldorf setting up a research centre.  They keep in touch via phone.  In any case we worked out my treatment plan and I started treatment the next morning with a Removab infusion.  This is an 8 hour infusion that in the past has made me very ill so I stay overnight at the clinic in one of their hospital rooms.  It all went well in that I had a 'good' reaction.  This involves getting a high fever (upto 40.4C) but feeling freezing cold and shaking like a leaf for almost an hour.  Then nausea, headache and itchy skin.  All more or less controlled by more drugs.  I slept well that night with the help of a pill but was a wreck the next day (yesterday).  Too sick and tired to eat or read so just dozed all day.  The good thing about treatment here is that they consider all the body functions so infusions are given to support the circulation, liver and nerves.  This does not happen in Australia with chemotherapy and I think it should.  We caught a taxi back to the apartment at about 4 pm as I was too sick still to walk back.  Managed to eat a banana and have some tomato soup with a little rice in it.  Got through the night quite well, woke up a lot and sweated profusely but otherwise ok.

Feeling much better today and managed to walk to the clinic for further supportive infusions including Hepamerz and Glutahione for the liver,  Alpha Lipoic acid for the nerves, Fishoil for inflammation and assist detox and Magnesium which was a bit low.  Lots of blood taken at various times to check all is well and see progress.  Also got laxatives as the anti nausea treatment causes constipation.  Might have a coffee enema tomorrow.  It is 1 pm and hoping to leave in the next half hour and have lunch at the apartment and may get a start on my new embroidery that I brought along.

The plan is to have another two Removab treatments about 5 days apart and if I am recovering well maybe have some days off from the clinic between treatments.  I will continue with back physio on Monday probably unless I have the day off then.  Want to have plenty of supportive treatment so I am well enough to enjoy the holiday after treatment but would like to have some days off if this does not compromise my wellbeing.

Surviving and thriving

Linda

Cancer Setbacks and Chemotherapy

 

Courage is a quietness....

born of facing up to life.

~ Emily Sargent Councilman





It is amazing that it is already February 2012.  So here finally is another entry.

My cancer marker CA15.3 continued to rise to 587 by 30th November 2011.  The only positive was that the increase had slowed down.  Plan was to go and have a holiday in Hawks Nest about 200 km north of Sydney and then retest the CA15.3 cancer marker and have  bone and CT scans when we got back.  Continued treatment as before.


We had a wonderful month in Hawks Nest with daily, one hour, beach walks.  We walked either along the Nelson Bay beach or the main surf beach depending on where the wind was coming from.  We were incredibly lucky with the weather as it has been a cool, wet and windy summer.  At least we missed out on the wet part most days.  The house we rented was right next to a lovely patch of bush and was light and airy with a lovely big deck at the front.


All my family were there for Xmas lunch/dinner.  My mother lives nearby so she was there and my younger sister, Paula, came over from the USA for two weeks. My older sister, Yvonne, and brother in law, Lionel,  also rented a house nearby for a week. My two nieces, Elise & Alison and their partners Ed and Graham and Elise's kids, Monique and Theo were also there.  Quite the family gathering.  It was great.  The food was fabulous, courtesy of  Yvonne and Alison who is an apprentice chef and produced some truly yummy food.


Our three dogs thoroughly enjoyed the beach walk and if the weather wasn't suitable we would walk them along the river.  They are such a joy to have around.  We started each day with yoga and meditation followed by a walk after breakfast.  I was making fresh vegetable juices every morning as well. In the afternoon I would be quite tired and so I would stay 'home' and embroider or read.  I finished my cross stitch of the Budgie Buddies.  Most enjoyable and very relaxing when energy levels are low.  Also read about 7 books.  My back pain had increased somewhat and so I would need to spend some time lying down which was a good opportunity to read.



We returned to Sydney mid January and I had the bone and CT scans the next day.  Got results on the following day and was totally shocked and horrified.  I had gone from 4 bony tumours to too many to count!  The black spots on the scan are the tumours.  So mostly in my lower spine and pelvis but also upper spine, ribs, shoulders, skull and femur.  Yikes!!!  At least no major body organs were involved, liver, lungs, etc were still clear.  Brain wasn't checked but I have no symptoms to indicate any brain tumours.

I still hoped that the cancer markers would be down.  To me this would mean that the tumours had grown prior to my last treatment change in October/November and were now stable.  Unfortunately it was not to be.  The CA15.3 cancer marker had rocketed to 1558.  The cancer was progressing exponentially.  It explained the increased pain and tiredness.  Otherwise I felt ok.  So apart from the peripheral neuropathy in my lower legs and feet, pain in lower and upper back and pelvis and tiredness I felt in pretty good shape.  Considering the tumour burden I now had and the extent they were involving my lower spine in particular, it was amazing I am a well as I am.  My white cell count had also dropped with neurtophils and lymphocytes being below normal levels so my chance of infection had increased. 

Yesterday I started chemo with a drug I haven't had before called Abraxane.  I have it once a week on a Friday for three weeks then a week off then another cycle of 3 weeks.  This is the regime if my white cell count can be maintained at reasonable levels.  Had them checked just before the chemo and the neutrophils were back to low normal and the lymphocytes just below normal.  At least they had improved. Apparently this chemo shouldn't make me too sick although I will lose my hair again.  I don't care as long as I lose the cancer as well.  So the routine on Friday is chemo in the morning, come home, have lunch followed by a coffee enema to help the liver detox and it is proving to be very helpful with the pain (nobody knows how or why this works, but it does).  I have just purchased a small infra red sauna that I can lie in (has sort of domed top with a mat underneath)  as hyperthermia treatment.  This makes the body think it has a fever and boosts the immune system.  Cancer cells also don't like the increased core body temperature so they become more sensitive to the chemo drugs.  By then it is lunch time.  Two days a week I have the sauna while I am having my vitamin C infusion as it is supposed to potentiate the effects.  I am having the coffee enemas daily now as I am trying to keep my liver as healthy as possible and control the pain without resorting to opioid drugs.  The sauna also helps with detox as I sweat profusely.  Supplement wise I am back to 70 tablets a day.

Next cancer marker test is in 3-4 weeks to see if any of this is working.  In two months, all going as planned we will head to Germany for three different immunotherapies.  Should take about three weeks.  I am hoping to have improved from the chemo and with the treatment in Germany be able to spend a bit of time in Europe and then visit my sister in the US.  It is possible that I will get really sick again from all this treatment and not be able to do much in way of sightseeing but I hope to at least catch up with some relatives in Holland again.

Overall I am still optimistic about controlling the cancer again and maintaining a good quality of life.  I have certainly been enjoying the days, despite the incessant rain, and am incredibly grateful for each day, for my darling partner without whom I would not be here and who brings me such joy everyday, for my family who are incredibly supportive and  for the dear, lovely friends who are in my life.   There are so many things in my life to be grateful for that it eclipses the travails that cancer brings.

Surviving and thriving

Linda

Birthday & Survival Celebrations

 

Waking up this morning I smile

twenty four new hours are before me

I vow to live fully in each moment

and look at all beings with eyes 

of compassion

~Tich Naht Hanh









The Jacarandas are in bloom, gorgeous!  I have just celebrated my 60th birthday and survival, fabulous!  I have recovered pretty well from my nasal radiation, inside of the nose not quite normal but overall pretty good.

It's been quite a while since I made an entry to the blog and lots has happened.  We spent a week at Wentworth Falls in the Blue Mountains west of Sydney in a dog friendly holiday rental.  It was unusually cold for the time of year and rained most of the time.  Managed to get a couple of walks in and fortunately the house was very comfy with great heating, a great find, we will be back.  The weather being what it was we got a lot of reading done and still had a lovely time.
The waratahs were in full bloom and particularly lovely this year.  Had a white one flower in my garden.  Caught up with friends which was nice also.

Late October we went to Tea Gardens to the Myall River Festival.  We had never been before so it was a novelty.  Although rain was forecast it was acutally a beautiful day and the stalls and events (woodchopping, dancing, singing, ukelele concert) were right along the river, very scenic.

This month I had a 60th birthday & survival celebration which was great fun.  On my actual birthday Glen had taken the day off and we went to Cottage Point Kiosk for lunch with a dear friend, Carolin.  It is a small cafe right on the water in Kuringai National Park. They do the yummiest Barramundi in a curry sauce.  The weather was gorgeous and we had a lovely afternoon.  My younger sister made a surprise visit from the US, which was an amazing present,  arriving before the party and staying for a week.  One of my nieces flew down from Brisbane to be there and my other niece managed to get off work to attend.  My mother came down from Tea Gardens for a week as well.  My older sister did an incredible amount of driving to make this all possible.  I am so lucky to have such a supportive and loving family. We hung balloons and other decorations and a caterer did a beautiful vegetarian spread.  A friend and a guitarist played some lovely music including one of my favourites, Leonard Cohen's Halelujah.  Two other friends sang as well, another one of my favourites, Deep Peace.  Later we played some nice loud boppy dance music got up and danced and a good time was had by all.  It was such a joyful occasion.The weather forecast said rain but it was the most beautiful evening, no rain and no wind and a pleasant temperature.  A great way to celebrate the fact that I am still here and enjoying myself despite the predictions of the doctors in 2008 that I wouldn't make it to my 60th.

Meantime I have had several doctors appointments, including with my doctor from Germany who had come out to Australia to see patients.  The pathology results have not been encouraging.  My last cancer marker CA15.3 has reached 508.  This would indicate the cancer is pretty active.   After consultation with 2 of my doctors I started on a new drug, Megace, which is a progesterone inhibitor as the estrogen inhibitor, Fareston, did not seem to be holding the cancer.  I have continue with the Fareston in case some cells are still sensitive.  This was done after my CA15.3 had reached 330.  A month later the CA15.3 was 508.  This could be due to the fact that the new drug is useless or that it has not had long enough to work.  Will retest markers next week.  The peripheral neuropathy from the thalidomide was getting progressively worse so that has been stopped, hooray!  A little scary as I now am not really on anything that is antiangiogenesis (suppressing blood vessel development so the cancer can't grow very big).  I have had a slight reduction in foot pain so can more comfortably walk the dogs.  I have added an infusion to my twice weekly regime with alpha lipoic acid which is supposed to help with the nerve repair.  Means I spend more time attached to the drip stand but if it helps that will be great.

My appointment with my German doctor was very encouraging in the sense that there are still several new things available over there that could be helpful.  I will probably at least repeat the treatment I had in January 2010, Removab,  which made me extremely ill for about 12-24 hours but which halved my circulating cancer cell count.  I had three sessions about 5 days apart and would do that again next year.  There are a couple of other options for which I am waiting to get more details.  There is also the possibility of hyperthermia, which is now available in Melbourne.  This heating up of the body makes the cancer cells more sensitive to the anti cancer drugs, so although it is not a cure it is a way to boost the effectiveness of other treatments.



Meantime I have reduced my tablet intake from 94 to 54 which is very nice.  I am now also on some new drugs for what is termed Metronomic Therapy.  The definition of metronomic chemotherapy varies, but generally it refers to repetitive, low doses of chemotherapy drugs designed to minimize toxicity and target the endothelium or tumor stroma as opposed to targeting the tumor.  For me it consists of taking Celebrex (a non steroidal anti inflammatory drug used for such things as arthirtis) and selenium in the morning and then low dose cyclophosphamide after lunch.  This is a three month regime.  I probably will not have been on this regime long enough to have any effect on next weeks cancer marker test.  I have had no ill effects except slight nausea in the morning.

My main problems now are muscle cramping at night mainly in feet and lower legs which can get bad enough to keep me awake most of the night. I have epsom salt baths, take magnesium tablets and powder and to stretches, often to no avail.  Have also tried Scwheppes bitter lemon or tonic water (they have quinine in them which is supposed to help with cramps). Valium helps but I don't want to use that more than once a week or less as it is addictive, can cause depression and makes me tired the next day.  The peripheral neuropathy continues to be a problem as is back pain and my energy levels are still not normal.

My meditation has deepened and I am doing longer sessions and enjoying it more.  I drink about 1 liter of vegetable juice a day (freshly squeezed) and eat a very healthy diet with lots of vegetables and no meat.  So I keep plugging away enjoying my days as much as possible and valuing time with friends and family.

Surviving and thriving

Linda

Radiation Burns

Happiness keeps you sweet

Trials keep you strong

Sorrows keep you human

Life keeps you humble

~ unknown





Since having cancer I have certainly learnt a lot about my tolerance to pain.  Before cancer I always thought I have pretty good pain tolerance.  Just as an example, there was the time I was on a bushwalk with a small group in Kakadu.  It was a 6 day walk with full packs (food, tent, cooking utensils).  I think mine weighed about 23kg.  On the second day during a lunch break I was swimming in a lovely crystal clear, fast flowing stream when I kicked a rock and broke a toe.  Not a good thing to do when you are way out in the bush and there are still 5 1/2 days of walking to go.  It was the third toe, so I strapped it to the second one, took some paracetamol and continued on the walk.  After a couple of days I thought I had better replace the tape.  The wet season had lasted a bit longer than usual so we were walking in water a lot of the time.  No way to keep the feet dry.  As I pulled the tape off a large section of skin came off with it.  Gruesome and leaving a red raw surface.  More pain.  Well, I finished the walk and managed to enjoy it despite the pain.  I am just telling this story to show that I can tolerate a certain level of pain.  On Xray when I got home there were three fracture lines in the toe, fortunately no displacement of the bone fragments which no doubt would have made it a lot more painful.  The photo, below, is actually from another similar walk in the Bungle Bungles (Purnululu National Park)



The point is I am not that pitiful when it comes to putting up with pain. There have been some procedures or treatment since I have been diagnosed with cancer that have been extremely painful.  A liver biopsy early on was one.  The thing I find strange is that the doctors don't really prepare you for it.  With the liver biopsy I was told why it was painful only as it was happening.  The local anesthetic that is given is only in the skin, they can't put local in the liver capsule, so when the relatively large bore needle gets to the liver it is very painful.  There have been other painful moments along the way;  trans arterial chemo embolisation of the liver, the first time I was given Zometa, severe gastritis (needing hospitalisation and opioid pain relief) and Removab treatment, active metastases in the spine.

The radiation treatment itself deserves a short mention and a photo.   There is always a planning session for radiation where everything is lined up so that the treatment is given in the right spot.  It is obviously important to then keep very still and be lined up in the same position for each treatment.  To keep my head very still and position it the same each time, a 'plastic' mask was moulded around my face in the planning session.  A hole was made over my nose area and then a wax block was made to fit over my nose.  This is done because the radiation works better if it goes through a solid surface rather than air.  For each subsequent treatment I had to lie on my back with my head placed in a head rest and the mask placed over and bolted tightly down so I could not move my head at all.  The wax block was then placed on my nose and the measurements all checked and the radiation would start.  I had 15 treatments.  These were daily with weekends off.

Now I have second degree radiation burns to my face.  It is miserably painful.  I was warned of redness, peeling, ulcerations, blisters, crusting - but no mention of severe pain.  I was given ointment and drops for crusting and "soothing".  Every ointment I have tried causes intense stinging before the so called relief.  Then the relief only lasts a short while.  After a couple of days of pain and trying my own various concoctions, particularly fresh aloe vera plant, I could get no lasting relief.  I rang the hospital and they got me to come in and put a dressing on the burn.  This stopped the burn from drying out and stopped oxygen getting in. So a lot better but not great.  I then discover that there is local anaesthetic gel that can be put on.  Again a bit of improvement.  Nothing fabulous though but at least I don't feel like curling up into a foetal position in bed most of the time, not that that would have helped because night time in bed is the worst.  I have to get up during the night to change the dressing

Truly I do not understand why the radiation doctors and/or nurses can't suggest all this helpful treatment from the get go.  Looking on the internet and at various forums this pain issue with radiation burns is common.  On top of that the face has lots of superficial nerve endings so it stands to reason that damage caused by the radiation, which really is the whole point, is going to hurt and hurt a lot.  The only warning I got was that the damage would continue to get worse for about a week after the actual radiation treatment had finished.  It is a week today.  Hopefully I am at the turning point and the pain will start to subside.  There are other drugs apart from paracetamol I could take to help with the pain.  I am taking the maximum recommended amount of paracetamol now and don't want to go over as I don't want to burden my liver, not after having had metastases there.  The problem with stronger analgesics is that they invariably cause constipation.  I already have problems with that due to other drugs I am on so don't want to exacerbate that issue. 

The least painful and least itchy irritated time is just after I have cleaned up the burn, applied aloevera, solugel and xylocaine gel and the dressings.  It gets itchy in about an hour and then it is downhill from there.


On that note I will go and take the dogs for a walk before I get to the painful bit.

Surviving and Thriving

Linda

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