Forum Discussion

Anne_Maree's avatar
14 years ago

18 month Post secondaries in Liver and Bones

Well I feel very fortunate to have reached the 18 month mark. The median survival with soft tissue lesions,eg lung , liver or brain is 18 months according to current statistics. Saw my oncologist today and my tumor markers are down to normal (17). All previous readings have been in mid 30's.

I feel the best overall since diagnosis apart from Hormonal symptoms which are mainly a side-effect of femara. Poor concentration,memory require me to be dependent on a diary. I have to pace myself carefully to avoid anxiety and hot flushes. I see a psychologist regularly to help manage and support changes going on. I have a great relationship with her and it is the best thing I did to help support my ongoing care.

CT scan shows a reduction in size of Liver tumors since last scan 3 months ago(6 rounds of Gemcitabine and taxol completed in late Dec 2011). Last round of chemo  (2010) tumors were not visible to human eye 3 months post chemo but then started to grow. Therefore will not really know if tumors stable until another CT in 3 months.

Bone scan shows all bone mets stable, no detectable new ones and a small reduction in size of sternal tumor.

I have no fatique or insomnia now which is a big improvement.

Off to Gawler 10 day retreat in April, however not confirmed yet. I confess chocolate is still my weakness, but this is a work in progress.

Trying when able to juice 4-5 times a day, eat mostly organic food with greater than 60 percent raw. Take vitamins when organised.

Current medical treatment is

Zoladex monthly

Xgeva monthly

Femara daily

Overall very pleased with my progress. A rest off chemo for a few more months.Yipeeee!!

Praise God for His graciousness.

9 Replies

  • Hi Anne Maree

    You are doing great!

    My museli mix changes a bit but the general inclusions are:

    All organic ingredients:

    oats, chia seeds, flaxseeds, sunflower kernels, almonds, dried apricots, dried goji berries

    I have with soy milk but almond milk would be good too.  I usually add flaxseed oil and have raspberrie and blueberries and banana with it!  Yum!

    Sometimes I just do porridge - especially when it is cooler.  I just use organic oats and make on water or soy milk - I add blueberries and raspberries and cinnamon - then banana, a little maple syrup, flaxseed oil and sometimes nuts or seeds depending on my mood!

    I'm not a real sweet tooth but when I have a sweet craving I usually eat dates or watermelon or a banana.  The chocolate that I nibble on is Loving Earth brand - raw and Australian made - sweetened with agave - I especially like the mint but also like the maca and lacuma one. 

     

    One thing Ian said to us this week is "where you are at right now is where you are at and that's ok" - as you said peace is important too.  

    I haven't juiced for a few weeks now and that's ok - I'm adjusting to new meds first.  

    You are doing great and you will love the 10 day course too - a refresher and update on all you are doing to stay well now.  Everyone's path is different but right for them.

    Love and light,

    Amanda x

     

  • You are doing fantastic! wow, well done!!!

    I have a 15 months old baby, and I know how difficult is to get time to rest, be in peace and have a healthy diet....As I said my juices are not more than 2 per day, but I wish I can have more, I do not have any family in Australia and we are basically alone with my husband to do everything! But our diet has changed dramatically and we both notice the difference! We have more energy and feel great!

    For breakfast I have a glass of water with lemon, or vital-greens, a toast with wholegrain spelt or a bit of spelt (no sugar) cerals. I do not have milk or butter at all! If I need a bit of fat I add olive oil or flax seed oil, hmmm yummy!! For lunch I have grains plus salad, or salad and templeth or tofu, garlic, herbs and onions! I try to have raw veggies as much as I can...I drink water, but no as much as I should. Dinner is simple, veggies, soups, salads, sometimes eggs (in any form!)....

    I have an amazing doctor with over 30 years experience in cancer, Dr, John Piesse (his name is writing in the ackowledgment part of Ian's book!!) So, he is in charge of my vitamins, I am taking them regularly! And I honestly feel very good!

    This is all for now, I really hope you are doing great, and keep your spirit up dear!!!

    have a fantastic week,

    L  

  • Thankyou for everyones comments.

    I am interested in the content of your muslei Amanda. If you get time you might share it on Vegan blog under breakfasts. I have been slack making a start but will eventually.

    Somedays I only do 1or 2 juices but on a good day like today I did 6. Wow! I mostly do 3-5. Sometimes I get a bit doubtful if all this isnt helping especially when my tumors keep progressing but then I realise no matter what I have a better quality of life. Hormonally I am better, and less side effects all round.

    I try to remember that being in a peaceful place is as important as eating well.Now that is a challenge when You still have to do life. My family are happy for me to juice etc but life is still in the fast lane. You would 'nt know there was cancer except for the hair loss. My body knows it so I have to put the stoppers on as needed.

    I have just moved house and am still getting settled and my husband recovering from major surgery. I have to work very hard to keep priorities in order. My head spins if things feel too hard and then I dont achieve anything. The good part of moving house is the kitchen is bigger so I have a bench space for juicing, separate space for prep work and another for piling unwashed!! dishes. Looking into a dishwasher at present.  My previous house I had no bench space and it was hard!!

    I get cravings for something sweet or yummy!! in the evening. I can be good all day and think I have done so well and then give in to chocolate or biscuit or cake. Does any one have suggestions for this? 

    How does every one go with taking vitamins+juicing+good meals+plenty of fluid+rest+exercise. Are there any tips ? I personally just do what I can. I have started putting vitamins on table now with my meals now I have more room. This works better. I do lunch simple -salad plus something... I have smoothy with chia seeds for breaky but like to do millet porridge if time. Evening meals have started doing gawler recommended meals.

    I eat goats cheese on occaion but it is controversial!

     

  • Hello Anne! Well done!! I am soooooooo happy for you!!! You must be so happy and please enjoy this moment!! 

    I am also struggling with the juices, but I know how good they are...I have 2 to 3 per day and I feel that is quite fare!...I am also trying to avoid dairy and meat, but as Amanda I loveeeee cheeses!!..I realise that meditation, a good diet and positive thinking are my tools to feel great...the more I do the better I feel!!!

    I really hope you continue as well as now and keep smiling the life is beautiful and the sun is shining for you dear!!!

    be strong!!!!!!!

    Leonor

  • Anonymous's avatar
    Anonymous
    Not applicable

    Hi Anne Maree, congratulations on your results! You must be feeling pretty chuffed with yourself! I didn't know the average survival rate for soft tissue lesions was only 18 months :-(. I have never asked my Oncologist for a "time left" and she has never offered one. At this stage she is talking about managing my disease as a chronic illness, and I take comfort in that. Perhaps I have my head in the sand, I dont know, but I cant stand statistics! They make me anxious and scared! Anyway, I am so pleased for you that you are doing so well! I'd soooo love to get to the Gawler 10 day retreat...it sounds amazing and I look forward to hearing all about it when you get back. On top of the fee for the retreat,  I'd need to organise air fares as well as child care for my daughter to get there. You are right, the diet and juicing is always a challenge, especially when things are really hectic at home. Anyway, congratulations once again, take care, Celeste?

  • Yes I am aware of so many variables that it is so hard to take much notice. But it does  give me some comfort to know I passed an 'average' marker. 2 different oncologists told me this prog. My cancer was so aggress at start the oncologist didnt really think I would do well. I think the other stats you quoted are median survival for advanced breast cancer in general. That would correlate with 5 year mark being 40 percent alive. I am hoping to have many years left.

    I get annoyed with chronic disease term. You cannot put breast cancer up with diabetes or high blood pressure etc. I met a lady last week where the num in oncology told her basically to get over it, it is only a chronic disease.

    To have a chronic disease doesnt mean you have a shortened life span.

    I would like to think I havent got a shortened lifespan and am aiming for cure/miracle but reality is there too.

    I alway am challenged to achieve the diet/juicing. The reason I want to go to gawler foundation is get a better feel and perhaps simplify things a little. I also feel the next few months is critical for me. I am desiring to reach more than 6 months post chemo before the liver tumors start regrowing. I want to have this time also away from temptations of food my family frequently endulge in.

    I have a lady come a couple of hours per week to help me in the kitchen. My family on the whole wont eat my food. I also have a cleaner. 

    My naturopath feels goats cheese is ok but is looking into it. I think I have tried the choc you mentioned. I will have to give it another go. I am going to explore tofu dessert with carco.

  • Yes I am aware of so many variables that it is so hard to take much notice. But it does  give me some comfort to know I passed an 'average' marker. 2 different oncologists told me this prog. My cancer was so aggress at start the oncologist didnt really think I would do well. I think the other stats you quoted are median survival for advanced breast cancer in general. That would correlate with 5 year mark being 40 percent alive. I am hoping to have many years left.

    I get annoyed with chronic disease term. You cannot put breast cancer up with diabetes or high blood pressure etc. I met a lady last week where the num in oncology told her basically to get over it, it is only a chronic disease.

    To have a chronic disease doesnt mean you have a shortened life span.

    I would like to think I havent got a shortened lifespan and am aiming for cure/miracle but reality is there too.

    I alway am challenged to achieve the diet/juicing. The reason I want to go to gawler foundation is get a better feel and perhaps simplify things a little. I also feel the next few months is critical for me. I am desiring to reach more than 6 months post chemo before the liver tumors start regrowing. I want to have this time also away from temptations of food my family frequently endulge in.

    I have a lady come a couple of hours per week to help me in the kitchen. My family on the whole wont eat my food. I also have a cleaner. 

    My naturopath feels goats cheese is ok but is looking into it. I think I have tried the choc you mentioned. I will have to give it another go. I am going to explore tofu dessert with carco.

  • Hi Anne Maree - congratulations! I don't need to talk to you about statistics I'm sure - I have not seen that one before - I thought it was more like 36-39 months. However, there are too many variables at play here of course, type of cancer, age, how you respond to treatments etc... You have responded before so hopefully you will have responded will this time. You are doing what you can and will love the Gawler course. My oncologist refuses to give me a prognosis and simply says we are talking chronic disease. I "know" what the statistics say, I know the odds are bad but I am going to defy them. I have to believe that. I have met women with soft tissue mets who are 7 + years post diagnosis and still going strong - there is always hope. I am struggling with the juicing currently - new mess causing some tummy upset but I try to get in at least 2-4. Cheese is my weakness and I have found a raw, vegan chocolate that I enjoy - it does have cocoa butter in it which is a Galwer no-no but it gives me pleasure and I eat so well I figure this is ok. I'm off to make up my muesli now and so pleased you are doing well. Amanda x
  • Hi Anne Maree - congratulations! I don't need to talk to you about statistics I'm sure - I have not seen that one before - I thought it was more like 36-39 months. However, there are too many variables at play here of course, type of cancer, age, how you respond to treatments etc... You have responded before so hopefully you will have responded will this time. You are doing what you can and will love the Gawler course. My oncologist refuses to give me a prognosis and simply says we are talking chronic disease. I "know" what the statistics say, I know the odds are bad but I am going to defy them. I have to believe that. I have met women with soft tissue mets who are 7 + years post diagnosis and still going strong - there is always hope. I am struggling with the juicing currently - new mess causing some tummy upset but I try to get in at least 2-4. Cheese is my weakness and I have found a raw, vegan chocolate that I enjoy - it does have cocoa butter in it which is a Galwer no-no but it gives me pleasure and I eat so well I figure this is ok. I'm off to make up my muesli now and so pleased you are doing well. Amanda x