Liver Mets & Tumour Markers

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Vinnie18
Vinnie18 Member Posts: 21

Only got 7 months NED after chemotherapy, diagnosed stage IV in March 2015. Letrozole stopped working after one year, hormone blocker was changed to Tamoxifen which helped for under a year now the recommendation is Zeloda or a hormone treatment which is given via injection.

Can anyone with liver mets also let me know what your physical symptoms are? At the second diagnosis I had multiple lesions on both lobes with sizable tumours on both lobes as well. Following a Tamoxifen and cannabis oil regime all multiple lesions were gone with only a few tumours. Six months later there was progression.

I started last year with severe cramps, I have shortness of breath but my liver function and inflammation markers are fantastic. My physician (not onco) says that Essential Extreme tablets are the best on the market.

I am not keen to try any further chemotherapy. As I understand it, the time of NED the first time round doing chemotherapy is a very good indicator of how the second would go so I don't see the point as I was NED for 7 months.

My tumour markers are as follows:

06.05.2016 - 52,20

29.09.2016 - 61.60

18.10.2016 - 88,00

15.12.2016 - 197.40

17.01.2017 - 171,00

16.02.2017 - 185.00

What to do? Anyone else feel so lost?


Comments

  • Husband11
    Husband11 Member Posts: 2,264
    edited March 2017

    My wife did FEC-T for her primary tumor, then tamoxifen for approx 6 years, after which she was diagnosed with multiple tumors to her liver, both discrete and diffuse. She had overall fatigue and pain in one leg. Her tumor markers went up to near 500. She went on xeloda and after a couple of months, the tumor markers began to fall and the tumors shrank. She went through a spell of liver congestion and ascites (belly fluid accumulation) early her treatment. Very scary. The tumor markers are now near normal levels. The xeloda isn't a walk in the park, hand foot syndrome is her greatest problem, but it has gotten better over time, as is overall fatigue from poor sleep at times when her feet or legs bother her, but its giving her good quality of life and so far, 10 months later, it continues to work. If your oncologist thinks xeloda has a good chance of working, I would do it. It has worked for many.

  • Nan812
    Nan812 Member Posts: 289
    edited March 2017

    hi vinni, I was DX stage IV in March of 2015 also ( friday the 13th, no liver mets tho), so I was just wondering if you are still using the cannabis oil as part of your treatment?

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited March 2017

    Hi Nan812. Yes I am using cannabis oil both orally and as a suppository. Could you tell me what your CA15-3 is and how you are progressing. I take many supportive medication's as.well.

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited March 2017

    Hi Timothy. Thank you so much for your feedback. I am so happy the treatment is working for your wife. Please keep me updated.

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited March 2017

    Nan812 where is your metastases? And what treatment are.you on.

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited March 2017

    Nan812 where is your metastases? And what treatment are.you on.

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited March 2017

    I had about 6 months between end of my initial treatment to diagnosis with mets. I have been on Xeloda for over 4 years and have been NED for most of it. So just because you relapsed shortly after ending treatment does not mean any further treatment won't work. Xeloda jas worked wonders for many including me. Hang in ther

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited March 2017

    Thank you for your feedback. Where was the site of metastases?

  • stagefree
    stagefree Member Posts: 2,780
    edited March 2017

    Hello :)

    My TM currently is 2467. Last month was 1270. The liver mets are strong. My only new symptom is lack of appatite. Still on Xeloda, waiting for MOs news whats next. Before Xeloda, on Tamoxifen, my TM was 3000+, which dropped to 12 in 6 months on Xeloda.

    Don't panic with numbers.. we have strong guns to divide them fast! :))

    Hugs

    Ebru

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited March 2017

    Thank you for your feedback. Were you diagnosed stage iv in 2012?

  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited March 2017

    Binnie- I had mets to both my liver and brain. My liver mets were extensive and throughout. Liver specialists said they couldn't help me as there were to many and wished me luck. That was in 2012. I had one solitary liver tumor pop up in feb 2015. I had that one respected.

    Liver has been NED on scans since then.


  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2017

    That's fantastic Leftfoot, many more years to you! Nice to see you Ebru, have you gone to your summer place?

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited September 2017

    Hi

    I stopped using CO as it proved to have no effect on the cancer itself, it may have helped with other things such as sleep and appetite but weighed up the cost and decided it was not worth it. CO failed twice as I was on it throughout chemo in 2014 up until recurrence seven months later. I went off it and then tried it again but tumour markers were going sky high. When I stopped I went on Xeloda March 2017 and my markers have gone down from 234 to 51.


  • Vinnie18
    Vinnie18 Member Posts: 21
    edited September 2017
  • Vinnie18
    Vinnie18 Member Posts: 21
    edited September 2017

    Hi Leftfootforward

    Can you give me an update on your diagnosis?

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited September 2017

    Hi Stagefree

    Can you update me on our diagnosis?


  • Vinnie18
    Vinnie18 Member Posts: 21
    edited September 2017

    UPDATE on my tumour markers

    06.05.2016 52.20
    29.09.2016 61.60
    18.10.2016 88.00
    15.12.2016 197.40
    17.01.2017 171.00
    16.02.2017 185.00
    17.03.2017 256.30 STOPPED USING CANNABIS OIL DUE TO PROGRESSION STARTED XELODA
    23.04.2017 186.60
    18.05.2017 146.90
    12.06.2017 98.70
    04.07.2017 88.10
    07.08.2017 51.00

    PDATE ON MY TUMOUR MARKERS:

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited October 2018

    Hi

    Currently on Faslodex. tumour markers are on the up and considering Eribulin and Gemcitabine.


  • Vinnie18
    Vinnie18 Member Posts: 21
    edited October 2018

    How are you doing?

  • Vinnie18
    Vinnie18 Member Posts: 21
    edited October 2018

    I have just finished Xeloda which did great for me. Tried Navelbine which failed and now trying Faslodex which is not working. How is your wife doing?

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