Tumour markers?

[Nat1990]

Has anyone had tumour markers up to 1500? My mum has liver mets and a spot on her spine.. she starts taxol tomorrow.. xx

[KC1025]

Hi Nat1990, my mom’s tm was over 2000 in July 2018 when she was diagnosed. It started to come down drastically about 6 weeks after she started with letrozole. She has extensive bone Mets and couple small spots in her lungs.

[Nat1990 in reply to KC1025]

Wow amazing!! Xxx

[illini9]

It can be scary when they look so high - mine were actually in the 4000s when I was first diagnosed with liver mets. They came down on chemo and then Ibrance/Letrezole and now hover around 60. I know they aren't always believed accurate but I did find some peace watching them come down as I was initially treated.

[Nat1990 in reply to illini9]

It is very scary! When I asked what they are now and she said that I was taken back a bit. What chemo did you have? And did you have many liver mets? Her oncologist said she may be able to go on tamoxifen after taxol as ibrance and letrozole didn’t work xx

[illini9 in reply to Nat1990]

I did AC (adriamycin/doxorubicin hydrochloride and cyclophosphamide. And I had many many liver mets - too many to count and the PET showed my liver quite lit up. The chemo knocked it back and the biggest indicator was the tumor markers as they fell pretty abruptly after the second chemo. However they went up more after the first chemo before they started going down - all the dying off caused it to double. That was scary but doc said normal as the TM included the dead cells.

[Nat1990 in reply to illini9]

I suppose we just gotta take the tumour markers as an indicator.. what treatment are you on now? Xx

[illini9 in reply to Nat1990]

I've been on Ibrance/Letrezole since I finished chemo. I do take TM as one indicator that you watch in conjunction with other blood tests, scans, and new/different physical effects. I've had them wobble on a month and then the next one stablize or decrease. We look for patterns with them.

How is you Mom doing with Taxol?

[Nat1990 in reply to illini9]

My mum has had 2 rounds of weekly taxol so far and has a 3 weekly herceptin injection. She will have 12 weekly taxols. She has 4 small spots on her liver and had her first tumour marker blood results back on Tuesday and it’s already dropped 100 marks just after 1 treatment in 1 week! 😄

[MacroMom]

Mine were almost 1,000 when first diagnosed and dropped to 18 on just Letrozole. Stay hopeful, there are lots of options and they do come down!

[Nat1990 in reply to MacroMom]

Wow amazing!! Where are your mets? Xx

[MacroMom in reply to Nat1990]

I have “innumerable” mets on my spine, ribs and pelvis (all stable for now) and scattered through my liver. The largest liver met is about 3cm. So far my liver function and blood work has been normal. Really hoping the Xeloda knocks back the liver mets. Honestly I think the Ibrance made them worse by weakening my immune system so much.

[Nat1990 in reply to MacroMom]

This is what I thought at my mums spot on her spine is fine now and now she has liver mets. Have you had taxol? Xx

[MacroMom in reply to Nat1990]

No Taxol yet though I understand that's an option down the line. Last month I started a monthly oral chemo called Xeloda (Capecitabine) that I take 7 days on/7 days off. I'll get labs again later in July to see how it's working. So far minimal side effects. Wishing great results and few side effects for your mum!

[Nat1990 in reply to MacroMom]

I wish you all the luck in the world 💕 my mums oncologist said after her 12 sessions of weekly taxol tamoxifen is a possibility to go on afterwards as a maintenance xxx

[PJBinMI]

I'm a long timer and have known several women who have had TMs in the 3000-5000 range. Everything about this lousy cancer seems to be very very individual! TMs included. My onc has always said that she pays most attention to how I report feeling! Scans are second with TMs a very distant third. In the 15 years + I've been living with mbc, my CA27-29 has only been in the "normal range" for several months when I was on second line Faslodex and the recommended dose went from 250 to 500 mg (one shot to two shots). Thankfully, I've learned not to let rising TMs make me nervous. But that took awhile, plus having rising markers not correspond to progression on scans. For me, my mother's lung cancer was much more upsetting than my own mbc! Moms are such important people in our lives and we can do absolutely nothing to mange their canccer! We can be there for them but somehow that seems pretty weak compared to cancer......... At least as "the patient" we get to take the treatments and make the decisions and have at least some sense of control! I hope your mother does as well as I have. Some of us do really well for a long time.

[Nat1990 in reply to PJBinMI]

15 years!! Amazing I needed to hear this.. yes it’s very hard all I can do is be here for her 100% she has a good attitude towards it so that helps. What treatment have you been on and where are your mets? Xx

[PJBinMI in reply to Nat1990]

I can answer your questions, but do keep in mind that we are all very individual, with different arrays of cancer cells and different responses to treatment, so what has worked for me may not work for your mother and any other individual, especially someone without a highly estrogen dependent set of cancer cells. I have bone mets only, in the spine, pelvis, shoulder blade and a rib. I have never had symptoms from them and have not been told to limit my activity due to them. I was on Femara (letrozole) for almost five years, Faslodex for over 9 years and now have been on Aromasin (exemstane) for about 1 1/2 years. For the bones, I was on Zometa until Xgeva was FDA approved and then switched to it. I am allergic to Zometa and had to have pre-meds (benedryl and hydrocortisone) plus a longer than normal infusion time and extra IV fluids to tolerate it. In about 2013 or 2014 I had to have back surgery, unrelated to the cancer, but in an area with bone mets. The neurosurgeon found my bones to be like bones with osteoporosis, so I was off bone meds for awhile and started back on them about a year or so ago. I have fatigue--how much is cancer, cancer treatment or age (73)? Who knows. It is worse some times than others and naps don't seem to help. I am fortunate to have extremely good medical insurance through my final employer, and both my husband and I have reliable pensions so while we are far from wealthy, we don't tend to worry about financial stuff. I've also been fortunate to have a wonderful and experienced onc, who retired at the end of last year, sadly. I like my new onc but have only seen her twice and she doesn't seem as comfortable as my first onc was allowing me to go for long periods of time without scans. I have a bone scan early next month. I've been at this long enough with good results that I don't worry now about scans, scan results or tumor markers. My tms have climbed alot at times when scans show good stabiility. So that is more detail about my journey with mbc..........

[Rhwright12]

Started out at 3910! 3 years later I’m normal TM and just got clear scans in May! So u never know...my Onc and surgeon didn’t think I was going to be one of the lucky ones...but God! Lots of prayer and exercise is what I say!

[Nat1990 in reply to Rhwright12]

Amazing!! What treatment were you on or are on? And where are your mets? Xxx

[Rhwright12 in reply to Nat1990]

I had extensive bone mets about 14.Plus the 3 breast tumors...2 right 1left...I had Perjeta/Herceptin (6 treatments) and then right mastectomy and then back on Perjeta/Herceptin after 15 months of just Herceptin...for a total of 3 years so far...I started taking Essiac Tea in January. (Vitamin Shoppe) And my bone mets were gone at the end of May! 😀 I’m addicted to The Truth About Cancer! And my cancer is gone so then there’s that...😀 oh and lots of exercise...I just joined Yes.Fit virtual races...I do 5ks (real ones) my goal is to beat the walkers! 😂

[needabreakfromcancer in reply to Rhwright12]

I recently read about the AMPK molecule that is essential for life. One of the things that produces it naturally is exercise. Because I have had polio, I am not able to exercise. I also have been diagnosed as being a borderline diabetic. A week ago I got on Metformin which also produces it. My hope is that it will help me to fight this cancer. I hope to join a study soon that uses it with antibiotics. I am waiting to get the info from my doctor here. An article I read said that they think that there is a connection between diabetes and cancer. I was told over 40 years ago that the 3-hour blood glucose test does not show borderline diabetes. I was given the 8-hour test right before they stopped doing it. It showed that I am definitely a borderline diabetic. it is in my family. My doctor told me at the time that a lot of people that are borderline diabetics would be missed. i am curious as to how many of you either are diabetic or have diabetes in your family.

[RLMB]

Praying for your mom and you!!

[Nat1990 in reply to RLMB]

Thank you xxx

[Becca65]

Wow, my mets are to my peritoneum only and my cancer marker numbers have never been over 99.6. The ascites seem to come back someplace in the 70’s numbers. I am wondering if we all are have the same markers checked CA15-3 and CA 27-29. I cannot imagine my numbers being so high. My numbers have been as low as marker 15-3, 34 and 27-29, 39.4 (this was while taking Ibrance and Letrozole). Having had the HIPEC surgery recently I am trying just taking the letrozole and seeing if that alone works. Trying with my drs okay and closely watching marker #’s for a few months. My numbers dropped just a little this past month and are at 15-3, 57 and 27-29, 69.