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. :)

 

 

  • Hi Shelz

    The appt went well with the Oncologist, I am to have 3 rounds of chemo Oxaliplantin and Capecitabine then another scan. Felt so much better after I had spoken to him. Had  my PICC line put in yesterday ready and it was ok as I had been getting in a stew about having it sited. Although I did start to bleed after I got home and had to dash back ,but it seems ok this morning. Start with an infusion next Friday then 3weeks of tabs x3 rounds.

    You sound like you have had a good week and have been making the most of it.keep up the good work,I am now at a point where I don' think about it constantly and am just getting on. I have made some soup and have frozen it ready for next Fri. Took your advice,at least I will have a meal after the infusion. Hope you have a good weekend it'  so nice be able to chat  and give each other support. Sue x

  • Sue, your message even sounds relaxed! Having a plan and knowing what's going to happen really does help.

    I'm on Capecitabine too. It means that twice a day I can instruct it to go and get the bad guys as I chuck it down!  

    I chose not to have a PICC line as I was too much of a woos about needles at the time but am having a rethink now as I'm running out of good veins. The IV chemo I have is really strong and it chews the veins up and they take around 4 months to heal!! However, on Weds my oncologist said she no longer recommends a PICC for me as I'm too active and so I'm now thinking about a Port, which is done under a general anaesthetic and is somewhat freaking me out, but I have three weeks to decide so I'll put it off until the morning of my next appiontment!!

    I've got a lazy weekend planned as once the steroids wear off I tend to crash a bit for a few days (had chemo yesterday). I bought a bright turquoise hammock with lovely fringe detail and it's a great place to just lie and chill.

    You have a good weekend too. Shel x 

  • Shelz That is exactly how I am going to think. my late Dad was an army man so I am going to think of him leading the charge. Sounds daft but what the hell if it works for me who cares.

    Have a good rest in the hammock and enjoy what good weather we get.speak again soon. Sue x

     

  • I like reading your post. I think the dr is going to do new test. I see dr. Sept 3. Im loosing weight, so nausea, Maybe i should go to hospital. Im really scared of what they might find. I metioned that before. It seems everday is a struggle. Your hammock sounds pretty and i bet its relaxing. I have a 4 yr old son and it breaks my heart cause hes so young and im sick. My husband works alot it just seems everything is gonna change if i get diagnose with the "c" word. Sorry just venting a little. 

  • Dear Berd

    I hope you don,t mind me replying to you as I have seen and been reading your posts. My name is Sue and I am fairly new to all this. I am sorry that you are having such a worrying time. I know before and after I was diagnosed I was really anxious and did lose weight due to the worry of it all. Did get some comfort and help at that time from the nurse at my G P. Surgery, I also phoned Macmillan and spoke to a nurse who listened to my concerns. It is a free phone number and you can get it from the Macmillan web sight. Don!t be afraid to call them as they were really nice and understanding.  Keep strong and remember we are all thinking of you. Sue x

  • Hi sue i dont mind at all for you posting. Thank you for your advice. I live in california, united states i dont know if there is a macmillan here. But i will check. Thank you.

  • So dissappointed. Went to hospital in curcial pain right under my left breast. They took a stool sample. Said it didnt have no blood. Urine is normal. My wbc are high. And they sent me home i asked can i have cancer they said if you do its to far advanced. Im not even gonna have a chance. Just upset right now. Thanks i love this forum.

  • Hi Berd

    I think you really need to find a local support group where you can talk to real knowledgeable people as your hospital visits seems to be very unhelpful. Or try another medical facility perhaps. I find it astonishing that you are being given such crude answers before any tests are even established. I cannot believe that proper medical professionals would say such things.

    Shel x

  • I know i hear rumors about this hospital all the time. I still see my dr the 3rd. Im loosing weight like crazy. I dont got an appetite. I just wish they can find  whats wrong with me. Thanks for listening. How you doing?

  • Hi Berd.        I agree with Shel you need to speak to a more knowledgable medic. Maybe your family doctor would be better. Sue x