Hello - Stage 4 CUP

Hi, I'm Shelley, diagnosed in April with Stage 4 Mets in liver, lung, lymph and bone of Unknown Primary.

I've always been fit and healthy, a personal trainer and rowing coach and have done lots of endurance rowing events, setting records, winning races, being "the first" so it's been quite a blow.  

After several rounds of Carbo/Taxol chemo some of the cancer has responded but not my liver. But the C/T stuff got me strong enough so that I can now handle ECX chemo which I started last Friday. A few rounds are scheduled and then more scans to see if this stuff will work. I'm confident it will, apparently it's the big guns. :)

It's a horrible game being played with all of us but I can only be positive and look forward and enjoy the life that I have. I call it my "new normal" because it is just life as I've always known it but within a new set of parameters: hospital appointments and endless handfulls of pills and IVs of chemo.

Chin up. :)

 

 

  • I love your spirit. If you dont mind me asking what were your symptoms? How did you finally get diagnosied? Thank you sorry if posted twice new to group berd

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    Hi Berd, I was really tired all the time, had to start napping in the afternoons before teaching my evening fitness classes. Then about Oct last year I started developing aches and pains, mostly in my diaphragm/stomach area. Doctors repeatedly told me it was muscle fatigue or pulled muscles and that I needed to slow down and not do so much.

    Finally one day the pain was so acute and the doctor I saw that day disagreed with the other ideas and sent me off to hospital to be looked at. After two weeks in there undergoing various tests, including a liver biopsy, the initial diagnosis of "liver infection" elevated to "metastatic cancer".

    My liver is quite badly affected, about a dozen tumours measuring between 30 and 45mm and the buggers do their best to hurt me every minute of the day! Ggrrrrr!

     

     

  • Thanks for the reply im waiting meanwhile im sick. Im 41 years old and on my right breast there was a lump that came and went so my first thing was a ct scan then mammo negative now im 41 routine mammo negative dr scedule me for ct scan for both sides on left side i have swollen lymph node june 22 no symptoms on tues july 17 got severe itching on neck by thursday diarreah sweats lost 8 lbs it seems like it slowed down now went to dr they dont know whats wrong they took more blood sent it to hepatalogist. Now im still waiting for biospy i feel better when i talk to people that understand a little bit of what im going through. Did you change your diet?

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    Hello again, sorry for the long gap in replies but I developed an infection and have been in hospital on IV antibiotics. Got out yesterday, woohoo! So good to be home and have tea and toast and have my cats on my bed. Really miss those things when I'm in hospital which is far too often for my liking!!  

    Anyway, I hope you are biopsied really soon and that it comes back as nothing but I know that waiting. I didn't really have it this time as I was not expecting cancer. I was expecting maybe a kidney removal or a liver replacement or some sort of operation that would fix whichever of the two dodgy organs was most faulty.  Despite all the horrible things I thought, cancer did not appear in the list at all.  

    However, a few years ago I had a lump that developed and had to go through the whole route you're doing now.  In between inspection by my GP (he was very concerned) and my mammogram I had a holiday to "enjoy" haha. It was good to be away and in the sunshine but I fretted the whole time, thinking I was going home to breast cancer. Luckily however it was a cyst, drained immediately and no bother since.

    Just stay calm - or as calm as you can! Yes I've changed my diet. It's always been good as I follow a very healthy lifestyle anyway, but I'm now more conscious of certain super foods.I include a lot of pomegranite and avocado as have been told they are both great for cancer, I try and eat mostly alkaline foods to keep my body as least acidic as I can.  I also use a few supplments to ensure my body is getting every nutrient that it needs every day.  I make smoothies with all the ingredients in and so I'm done in one go.  

    When is your biopsy?

     

     

  • So sorry to hear you were in the hospital but happy your home with your kitties. My biospy is the 4th of august. I have been feeling better. I did a blood smear yesterday waiting on the results. What supplements do you use? Like boost? I want to try to eat healthier. Thank you for your time.

  • I'm not familiar with Boost, but the most important supplement to me is a greens drink. I use Lean Greens as the taste is better than most. It's a ground up mix of green stuff that gives you all the nutrients you need each day in one easy dose. So even if you don't eat well, you've had your five a day.

    I hope you get your blood results quickly as the docs can tell a lot from them.

    Be patient with the biopsy, mine took over two weeks for the cultures to be grown and then analysed. The growing process takes as long as it takes and cannot be rushed along.  Make sure you ask how long this process is going to be so that you have a realistic expectation of when you'll hear back.

    In the meanwhile eat logs of fresh food, lean meats and veggies. Cut out the processed food - nurture your body with food rather than just fuelling it with whatever junk is to hand. 

  • I hate to keep bugging you but what is the mix of greens or is it called green drink were do you get it or do you make it in a juicer. I started having bad pain under left breast like on the edge of the rib cage. I have alot of sweats were i feel sick. When were you diagnosed? Just very curious. What treatment are you receiving right now? Sorry so many questions just really worried.

  • Hello again Berd,  The greens drink I use is called Lean Greens.  You can get it here: www.leangreens.com. You just mix it with water or juice or add to any smoothie (either shop bought or make your own in a juicer or blender).  Using a blender is better as you get the pulp of whatever fruit you are using which is the fibre and an essential part of a good diet.  Using a juicer means you often throw away the best part of the fruit and you can also use too much fruit which means an excess of fruit sugar.

    I was diagnosed in April this year after a severely acute pain in the right side of my abdomen landed me in hospital for investigation.

    I've been on Carboplatin/Paclitaxol chemo but it wasn't totally effective so now I'm on ECX which is a three parter and I've not yet learnt the big words that make up the E, C and X.  E and C are intravenous, the X is a pill but I've had to come off it as I developed an infection. So off it currently while my immune system rebuilds, back on it next Friday. 

     

  • By the way, don't get hung up on treatment types - there are so many and they are so individual to types of cancer. At the moment you're probably getting yourself into a worse state. You've got a long way to go before any diagnosis. 

    My oncologist once told me to stay away from the internet and it was really good advice.

  • Hello how you doing? I feel like talking to someone who understands. Well today i thought i was getting biospy and they just did another ultrasound it went so fast didnt ask dr nothing but he did say lymph node has color and i think he said there was a whole bunch of little ones inside. Do you have any knowledge of this but my chest xray is good kidney function liver function i have symptoms of the cup. How are you getting along? Now i have to wait for biospy.