How are people with liver mets doing?
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MJH - good to hear from you! Breaks are really important, but can you quickly tell us how you are doing?
>Z<
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I will miss you MJH you are a rock!! It's so kind of you to let us know, don't be gone long, but do rest. I feel so close to the ladies here. There are no words, they are truly there when you need someone the most!!
Ok, I tried finally going to treatment thingy, I didn't like you have to write all these things in their terms, I don't feel like going through the dates etc..
I wrote a synopsis for those that it matters to:
Lumpectomy- IDC-ER 95 PR 15 Her2- High Grade -First treatment with A/C- Rads / then Taxol was added.
Zoladex less than a year later and Tamoxifen was added- Zometa
StageIV – Halaven/Zoladex - Oophorectomy -Then Faslodex then Gemcitabine/Carbo then Femara -Then CMF and then MF then Xeloda – then Examestane+Afinitor- Afinitor was taken off – then Examestane +Cyclophosphamide THEN Halaven again.
After 2 years of this nonsense, Onco agreed to do a biopsy, lo and behold - Her2 change to Her2+ then in was ER95 PR 1 Her2+ (fish 3) Herceptin/Perjeta/Xgeva – Then Herceptin/Perjeta/Abraxane – then just Kadcyla – then Ibrance/Letrozole – then Added Herceptin – Dropped Ibrance/Letrozole and started Navelbine/Herceptin – then Ixempra/Herceptin/Xeloda till now.(Xgeva)
I hope this says it all
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OMG. That is one hell of journey. It does say it all.
Thanks for putting it down. It helps me understand what you are dealing with. It certainly breaks the BCO treatment/diagnosis profile interface.
>Z<
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Right? love ya.
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Mom and Z, thanks for your kind words. I am doing well, though in a period of increased fatigue. Could be "March in the State of Maine Syndrome", due to still freezing temps and 20 new inches of snow outside!
After my February scan, I met with my MO. He agreed that my scan was pretty much the same as the one in September, however, he felt that since my tumor markers have been rising with some increase in back pain, that had we done a scan in between Sept. and February, it would have been BETTER than either. So he was thinking I may have started to progress a bit. Very happy that all mets are in bone and no return of liver mets. So, my DH and I talked him into another month on Ibrance, then getting another set of tumor markers and going from there. The pain has since subsided, but I may be very close to graduating to Falsodex. TMs drawn on 16th, appoint with MO on 28th. was upset at first when he suggested going to Falsodex, but now totally OK with it.
love and hugs, MJH
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ugghhh total torture. A little peace. And then to have to go to the supermarket...how, how. Fingers and toes crossed- it shall be good.
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MJH, tha is great that liver mets vamoosed! Faslodex was pretty easy for me. good luck and don't stay gone too long.
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Letmywifelive exactly, thanks a lot. Today was screening day. I did not see a/t about not TNBC, I did read TNBC heavily treated. In another place I did see it's directed also for heavily treated metastatic patients.
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mom - As long as your MO is comfortable, you should go for it. Since Dani's disease seems to have a lot of variations and does not respond well to classical treatment, that's the kind of profile immunotherapy is best at. So success of IMMU132 with TNBC, may mean success with a heterogeneous type of disease.
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Momall, is that screening for the trial?
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Yep, wasn't too bad. EKG, regular Blood tests. Anxiety, mixed with much hope. Starting time: Next thursday.
How are you Shetlandpony? I know you were going through a rough patch.
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Is Dani starting the trial on Thursday? I am doing well, feeling pretty normal now that the awful stress of decision-making is over. I know you know all too well about that. Now I just wait to see if Faslodex + Afinitor is going to work. If not, I may have liver radioembolization.
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Yep, the 23rd. Guys,there is def loss of hair with this. On xeloda was just like thining out, and her hair still had not grown out of the other treatments. It changed texture the whole 9 yards. Anyway, there is these bangs on the internet you could buy and she'll try to attach to a net (when it's all gone), she got herself some extensions to use under hats, she's ready. She's very decisive in e/t she does in life, you'd never believe. Just this thing she keeps at bay, e/t else is head on.
Afinitor is tough, but supposed to be good. (of course D was on it) Hope you feel the difference soon. Onco doesn't want to do a thing about the liver itself, she wants to try only systemic. Of course it drives me crazy. My mind gets it, not my heart.
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I think that trying something completely different as you are is a good thing. Systemic treatment is good with mets in so many places. Hope!
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letmywifelive- immu 132 is not immunotherapy despite the misleading acronym. It is tried and true chemo attached to an antibody that is selective for receptors generally only found on cancer cells. By combining the chemo molecule with an antibody they have made an old fashioned chemo selective for cancer.
Z
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Momall My onco wouldn't do anything on my liver other than systematic therapy. Even when I only had 1 met there. Frustrating to say the least!
Bab
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Babs - your experience is the norm, but we are starting to see docs adopt local treatment strategies for MBC.
Shetland - You might consider some kid of local treatment even if faslodex/ibrance keeps you stable ... very interested in how you proceed since you are in very good hands, medically.
>Z<
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I'm glad to see a few familiar names from the last time I was active on this thread. I'm going through treatments rather quickly and I'm having scans done today earlier than planned since my tumor markers have skyrocketed. I expect the Aromasin/Affinitor combo is not working for me and I'll be on Taxol soon. I usually roll with progressions, but this time it seems more scary. I'm so thankful that you ladies are here.
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my tumor marker ca 27,29 has been increasing for the past few months. Normal goes up yo 40. I was at 42, then 48, then 45, and now 56. My oncologist simply wrote I expect it to go back down. You just had scans that were unremarkable. While I know markers are unreliable and my "normal" tends to be between be 35-46 or so, the newest value bothered me some. Cancer can grow that fast ( last scans were in beginning of feb and end of Jan). Sometimes it bothers me how nonchalant docs can be with everything. I was told no new blood work forc4-6 weeks. Guess we will re-evaluate then if newcscans are needed.
I hate always being in a state of alert.,
Thanks forthe vent
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Zar gosh you explain it so well.
Babs they are scared to move away from usual protocol. Very frustrating.
Leftforward tha's exactly how Dani feels. She's had so many calls, come in tomorrow, scans next week, that she is always anxious in making any arrangements aside from the day she is in. State of alert, exactl Very disconcerting. the worst is we know they are just trying, they don't know.
Just saw this
:http://www.ema.europa.eu/ema/index.jsp?curl=pages%... now what?? they better not be saying Gandolinium can't be used.
Harrysmom what story do the scans say?
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Have there been good responses to Ibrance/Femara with widespread liver mets? Been on this duo for 3 months. Bone and CT scans next week.
The A/C chemo knocked out the tumor cells in my lung arterioles, but CT scan showed only "no progression" to liver mets. My MO said that "no progression" was good and to give treatment time. Ca15-3 slowly decreasing, now 82.
Sandi
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Sandi,
I have faith that you will find the Ibrance/Femara combination does well for you. It is a very popular treatment.
I am sure that Zarovka will chime in and share her experience with you.
You will note that she is also ER+ PR- / HER2-, and she is very active.
Not only that, she knows about as much about MBC treatments as anyone on this board.
My wife, KD, was scheduled for I/F, but we held off and decided to ride Taxol for as long as we can.
I would guess that I/F would be her next treatment if/when she experiences progression in the future.
Louis
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Sandi -
I had 5-7 mets to the liver, all less than 2cm in January 2016. The scan was ridiculously vague as to the number as I recall. I am paying $3K, can't you give me a number? In any case, they no longer showed up in CT scans after 4 months. The last PET scan in December, the radiologist said they were there but immeasurable and with no hyper-metabolic activity. I am 15 months out and doing well. 20,000+ steps today! No more steps planned, however.
>Z<
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Hi Sandi,I've been wondering the same thing. Been diagnosed with widespread liver mets (four of which around 4cm) and one bone met in February, and I'm due to start Ibrance end of the month. I haven't heard of many accounts of Ibrance working wonders with widespread liver mets. Also wanted to say I've drawn a lot of comfort from the knowledge and goodwill on the forum the past few months. Susan
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Sandi, I had a great response to hormone therapy (aromasin and faslodex), with Ibrance tacked on five months in, when I had extensive liver mets - innumerable, extensive, up to 7cm - when I was first diagnosed. Before I was even on Ibrance, the hormone therapy alone significantly decreased everything within 3 months to where my largest was around 2cm, I believe, and I had no hyper metabolic activity in any of my liver or bone mets. I suspect I could have had a longer run than 15 months on that treatment had I started Ibrance when I first started hormone therapy. It was not approved at that time and I had to wait for it to be approved with faslodex. Good luck with your treatment combo!
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That is a very interesting idea, Z, to do the radioembolization if all I get from my new drug combo is stable. I wonder what my onc and radiologist are thinking of as the line between yes and no. I will ask.
Leftfoot, two thoughts helped me keep calm and carry on as my TMs rose: First, I feel fine, my body is working, I am ok. Second, I started this stage iv thing with a liver that was scary full of large tumors, and still came out ok, so I know my liver rocks, and I rock. If I did ok back then, I will do ok again.
Momall, the link did not work but I found an article. We will see if the US follows Europe in recommending that marketing of the four agents be suspended. It looks like right now they should still be available to Dani if needed.
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Thank you for the responses regarding Ibrance/Femara (Letrozole) with widespread livers mets. I will keep you updated.
I will have my first scan since starting I/F on March 22nd, nervous. My MO explained the radiologist could not give a liver lesion count as just too many; some of which were like "buck shot" scattering. I also had Tumor Micro Emboli Syndrome which is a rare condition of breast tumor cells in lung arterioles - similar to pulmonary embolism, but cannot be diagnosed with Xray, CT or PET scan. The liver mets were accidentally discovered while investigating the shortness of breath. I was hospitalized for 3 weeks and had emergency A/C chemo. My MO and the pulmonologist saved my life. Apparently I was dying and didn't know it! Now I want to live as long as possible and prove that Stage IV really is just a chronic illness. Who would have thought that having DCIS in 2006 and 2007 would morph into Stage IV even with annual med onc checkups. Sucks..
Sandi
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Sandi - this could go very well for you. Just give the I/F 6-9 months to work. It's not a quick fix like chemo. The price we pay for a gentler treatment with good QOL. I don't know if you have had a scan after that emergency chemo, but that may have done a lot.
>Z<
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Good news to share! After 9 cycles of doxil and cytoxan my onc said I have had a complete response. There is no metabolic activity in my liver. My bony skeleton shows "intense diffuse activity... suggestive of effects of CSF (filgristim). Evaluation for osseous metastasis is limited in this setting." I say no bone mets :-)
On prior visits onc said no more hormonals, which I had planned to negotiate after a year of chemo. Since I was getting close to the max for the doxil I was expecting to choose either taxol or xeloda. Onc left me in room for quite awhile as he wanted to show the scan to someone (I assume another onc) Much to my surprise he comes back in and says we're going to do femara and Ibrance. I was on femara when mets first discovered in 2014 then progressed. We tried Ibrance in 2015 with faslodex but stopped because even at 75 mg my WBC tanked. That was before the liver mets though so now we'll try neupogen to deal with the WBC. I'm adding in flax, green tea and lots of protein.
I'm concerned about the low dose of Ibrance and I'm being lazy and ask all of you rather than research myself what the difference is between Neupogen and filgristim. Even if the Ibrance/femara doesn't work I am happy to get whatever break from chemo I can.
There is so much activity and support on this thread! I do read some and send positive thoughts to all who are on new protocols or trying to make these tough decisions.
Love to all
Lisa
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