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Mets in less usual places - please join in.

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Re: Mets in less usual places - please join in.

I saw the Onc. last week & the recent ct scan was much the same as before, so a bit of encouraging news. I do wonder how long my body can cope with tumour markers so high 1,783.Although 9 cycles of cape reduced it to 600 earlier this year I had 6 months off while they were stable & allowed hands & feet to recover.

 

My kidney function is impaired during the day due to pressure from the tumour & fibrous tissue - it rights itself overnight as I am up for a wee every 2 hours!! Just started next cycle of Capecitabine and no troubling SE's just the annoying inner cold sensation, especially in back & head.

 

My hospital changed the way they report tumour markers - they only update patient records on Friday mornings, really helpful as I have to have my blood taken late afternoon on Fridays!! The oncology nurse agrees with me that I need to have them sooner than having to wait 3 weeks until my next cycle. So next Monday I will ring my bcn & ask her to look them up. 

Moneck

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Re: Mets in less usual places - please join in.

Moneck, glad to hear you have been pain free for a week. That's brilliant news. Glad, too, that they have reduced the dose for you in the hopes of reducing your nasty side effects. Hope you enjoyed your walk along the seafront - sounds lovely. Weather here is dry but very dull (also near the south coast, but probably further west than you). Good luck, Barton.x

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Re: Mets in less usual places - please join in.

Pleased to say that the almost constant ache around tumour site has greatly eased & I have not had to take any pain relief for a week, not long for some but at the moment it is good for me!!

Been back on Cape but they have reduced the dose to 3 x 500mg AM & PM in a hope that it will still kick 'it' without my hands & feet becoming too bad. Also on Pyridoxine from hospital pharmacy, onc says it helps some people. I had it when I began the break in April. I'll try anything to try to avoid the soreness.

Applying Diprobase to hands & feet.

Lovely day down here on South coast, will walk gently along seafront to collect regular prescription from GPs surgery.

Moneck

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Re: Mets in less usual places - please join in.

Bump

 

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Re: Mets in less usual places - please join in.

I am now feeling the effects of the illness as cancer fatigue has increased greatly in the past 2 weeks, it is frustrating as I have always been a 'walker'. I've gone back to buses where possible (very thankful for bus pass) & pausing frequently when I have to walk, cannot drive due to a disability. The city I live in is quite hilly!!

CT scan on Thursday & blood test then restart Capecitabine on 20th.

I hope all other 'less usual' ladies are doing well in their treatments.

Monica

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Re: Mets in less usual places - please join in.

I too have mets in an unusual place.  I have a secondary tumour in my womb, and a couple of lymph nodes in my abdomen (but not sure where as afraid to ask!). I did have a couple of lymph nodes affected under my left arm (original tumour invasive lobular in left breast). Had  mx and node clearance in 2011, FEC-T chemo then rads. All clear until I started having period pains and mild bleeding in June this year (despite being through the menopause, being 57 and on Anastrozole). Went to my GP who got me straight in for an ultrasound, when polyps were diagnosed.  Had those biopsied and the day before I was due to go in for their removal was called in to hospital urgently. You know it's not going to be good news, but I never suspected secondary breast cancer until she told me. Am on Capecitabine now (Anastrozole stopped as hormone therapy not working any more) and am finishing 4th cycle pills tomorrow morning. Looking forward to my week off! Had a CT scan after 3rd cycle, and it showed a "significant shrinkage", which obviously pleased me no end (under-statement of the century!). Anyway, sorry to ramble, especially with no paragraph breaks but my tablet has a hissy-fit and shuts down if I try to put them in. Works OK on main computer, though. Very strange. Best wishes, Barton.x

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Re: Mets in less usual places - please join in.

I have abdominal mets too plus bone. Mine are deffused on my periteneum.

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Mets in less usual places - please join in.

This is for those of us who don't have mets in the usual places.

To let others know we are here for them.

As we have discovered there are less of 'us' represented on the Forum, though we know we are welcome on other threads.

 

I have a triple neg. lobular tumour in the abdomen just below right kidney, known as the 'alien' diagnosed last year - 13 years after primary triple neg.lobular, mx, chemo & rads. I had 8 cycles of Capecitabine then a few weeks off at end of April  as markers had come down from 1,800 to 600 & my hands & feet were quite sore.

 

I never dreamt that I would have had such a great summer having felt so unwell last year. The markers stayed level until beginning of Aug when they had risen to 894 but no rush to restart so we could see 'trend' & I was still feeling well. I do have pain but is usually just a dull ache. Blood test last week shows the are rising rapidly, now over 1,200, Onc has ordered CT scan & blood test same day in next 2 weeks & will be back on Cape a week later.

I have CT scans every 3 months to keep an eye on the fibrous tissue around the tumour, as it could compromise the kidney.     

Look forward to gathering other stories on  our own thread,

Monica