How are people with liver mets doing?
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Hi- Had my liver mets ablated in 2016 and they have still not come back BUT I recently had surgery for a BC mets tumor on my small intestine!!! The only way to discover it was to use a camera to see why I was having terrible GI problems. Several inches of my intestine were cut out laparoscopically, with clear margins. There seems to be nothing in the literature about this type of BC mets. I will probably go on to the last AI I have not taken, Aromasin. After that, probably Xeloda which I have not taken yet. This is all preventative since there is no sign of any more tumors!! Good-bye to Ibrance/Faslodex.
Anyone hear of BC mets to the intestine? THANKS, NIna
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panic time - scan shows new disease areas and progression on Afinitor/Aromasin.
Will see MO for plan.It’s as scary and devastating as my initial stage 4 dx.
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Lee, I'm so sorry! I feel like the clock is ticking very loudly anytime a treatment fails, but I hope and pray that your MO has something even better lined up.
Thinking of you,
Katty
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Leee- So scary. Is A/A your 2nd line? Profile shows Letrozole and Fulvestrant. Prayers for you.
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NinaCA, did they check hormonal status on that intestine met? And are you still IDC, not ILC?
Leee, yes, understand the panic. Were they able to get a fresh biopsy/F1 to check for any changes?
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Oh, I need to update my profile!
Taxol (progressed on it), Gemzar/Carboplatin (great response- PET scan didn't light up at all) then went on A/A for maintenance the past 3 mo and shocked at the changes so quick.
Yes, the clock ticking loudly is exactly how it feels.
I have an appt. and will hopefully have a plan.
Thank you for responses and most of all being able to understand.
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NicoleRod,
Thanks for asking about me. I am exhausted dealing with new clinical trial and the Army messing me around.
I was denied tx twice due to severe low blood counts. Seems we have that under control now with filgrastim injections 3 days immediately after chemo. Have had 2 successful chemos with this protocol. I feel much sicker than when on Abraxane, nausea and severe bone pain. Started Claritin today after tx yesterday. ONC thinks this will help the severe bone pain. Doing alot of resting and mentally planning our new house floorplan.
Army told me for 2nd timenin 2 months that I have no insurance. I think you already knew about that. Yes they fixed it both times, but have no awareness and no caring about how devastating this is for me. And the med bd is moving quickly to medically discharge me. Will probably be out by end of Feb. The loss of income will be devastating and it looks like dealing with the VA will be even more difficult than dealing with the Warrior Transition Battalion.
In a word...Exhausted from the inside out.
Gumdoctor
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Gumdoctor. No words for the Army that I can share here. I'm flabbergasted.
Leee would you be able to back on Gem/carb? No, I have no knowledge about MBC to intestines. I'm sure someone will chime in. 💞
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Gumdoctor UGHHHH I am so mad and upset for you!!!!! Are you guys on the East Coast? If you are anywhere near Northern Virginia and need me please reach out to me!!!!
I will be praying for you treatment to get easier and to kill the cancer in your body!!!!
((((hugs)))
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Lee I am so sorry you have had progression...I pray they have a great plan and it works wonders !!!!!
HUGE ((((((HUGS)))))))
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Grannax and NicoleRod,
Thank you for thinking of me. We are in the midwest. I am officially attached to Ft Campbell KY but live with my husband 5 hrs from Ft Campbell, 1 hour from my treatment facility.
Gumdoctor
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Leee, your panic is totally understandable. When you meet with your MO to discuss options and next steps, hopefully things will start to settle down. Starting a new tx is stressful. Keep talking with us here and we'll help you through it.
Gumdoctor, profoundly sorry you're not getting the support from the Army you've earned and deserve. It's hard enough dealing with this biotch of a disease without loading on income and insurance instability. Imagine that floor plan with sun shining into each room...
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Leee, sorry to hear about the treatment failures. I had the same experience with Taxol and Gemzar. Wishing your current treatment works.
Since last 4 months I was on CMF and it was really hard. My MO said 4 cylces, then scan. I had a PET scan yesterday to see if the last 4 months of chemo has done anything to kill the liver mets. I have accepted that there is nothing to stop the bone mets from progressing! Waiting for the scan results (Read SCANXIETY!!)
Gumdoctor, so sorry that you have to go through all this. I don't know anything about the army life but I have a lot of respect for them. Will you be covered my medicare or are you too young for this? How are you managing? Loss of income and health insurance is so devastating. I always worry about this since I have a long way to go before I turn 65. Hope you can continue to get treatments and beat this cancer.
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Hello and thank you all for your support!
The Army "fixed it" after finding out the computer showed I was ineligible. I have not had any interruption in treatment, so far. But I and my husband had no access to insurance for 5 days at Thanksgiving and for 3 weeks right before Christmas.
The problem with the way they do things is they react rather than proactively fix problems. My Army CPT unit Commander (I outrank her by 3 ranks) offered to pay for my prescription while I had no access to care. I told her I didn't need her to pay for my puny prescription. I need her to go find out why this is happening to me, and others, and get that fixed. She, of course, blew me off.
This is so devastating for me because it affects me with MBC AND it affects my husbands medical and dental insurance. We cannot trust what is happening with our insurance from day to day. So now I have to ask my nurse case manager each time if I can go to my chemo appts...is insurance going to pay...can I get the 3 images scheduled for next week...is insurance going to pay...
This is so devastating because they do not seem to hear me when I express my extreme distress over it. They do not seem to care that I, one of the many Soldiers they are responsible for, and many others have this going on, on a regular basis.
They will "fix it."
When I went nuclear on them, I educated them, loudly, that they can't fix this after I am in my casket and buried in the ground.
6 of them were sitting in my kitchen at the time. All 6 of them looked at their shoes.
Gumdoctor
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Nina, I have the same questions as SandiBeach: What does the pathologist report about the small intestine mets? Are they showing ER+? And are they really IDC and not ILC? ILC is known to met to the gastrointestinal tract, so maybe there is something in the literature on metastatic ILC.
Leee, I have said to people that finding progression is like getting diagnosed with mbc all over again. Every time it happens I go through a period of extra fear and sadness. I feel knocked off balance. Then somehow I incorporate it into my life and I keep going. You are not alone.
Gumdoctor, no wonder you are exhausted. It is so wrong that you have to deal with this disease and treatment, and with all these insurance issues that go on and on. I saw one bright note in your post. I would love to hear about your new house, either here or in PM!
S3K5, hoping you get good scan results!
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Grannax2, gotta love those anesthesiologists. What things do you rate them on? My Y90 will happen in about three weeks. I first had to get the stents exchanged, because it was time and fresh stents pose less infection risk. Then I have to be a week past that with no fevers for the mapping. Then I have to wait while the IR is gone for a week. Then I do the Y90. I hope nothing bad happens while I am off chemo AGAIN.
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ShetlandPony , yesterday the nurse called me with the scan results. Some liver mets show lower activity but there are some new lesions with higher activity. So she said there were mixed results. Regarding bone mets, CMF didn't do much (not surprising) and they saw profuse bone marrow activity which was not present in the previous scan (Oct2019). I don't know what to make of this.
No more CMF for me! I am seeing my MO next week to chalk out future plan. Based on the experiences of others on this forum, I may be getting either Halaven or Piqray since I have PIK3 mutation. If any one has experience with these two chemop drugs, I am all ears.
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S3K5,
Hard to tell from your treatment history, but have you tried the CDK4/6 drugs (Ibrance, Verzenio, Kisqali)?
There is a thread on Piqray. Very mixed reviews. It's worth reading. (There is also a thread on Halavan, but I've never really looked at it.)
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S3K5, I was on Halaven for 6 months. I tell folks it was the tale of two chemos. I went into it directly from dose dense Taxol/Gemzar, which left me weak and little to no energy. I dose reduced after 3 cycles, which definitely helped. But I developed terrible neuropathy in hands and weakness in knees. I think this was a buildup and leftover from the Taxol/Gemzar. After 3 months, I took a one month break, then back to Halaven and it was so much more tolerable. It's a quick infusion and I do recommend icing. It controlled my lung, liver, and bone mets for 6 months.
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S3K5, it seems like the cancer may have branched into different genomic types, with some tumors responding to a particular treatment and some not. Have you had recent genomic testing? A tissue biopsy only tells you about that tumor, but a liquid biopsy (blood test such a s Guardant 360) tells you what is in the soup. Something to discuss with your onc. Also, maybe a good time for a second opinion?
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Jaylea, wondering if your neuropathy got any better? I had my third cycle on Monday and the neuropathy in my feet and legs is getting really bad. did you find anything to help? I am taking gabapentin 300mg 3x daily, it takes the edge off. I am going to ask for a dose reduction for next cycle i think. thx, dee
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Shetland. The anesthesiologist rating: For my mapping I woke up toward the end. I heard my doc talking saying " right, right, left, right etc. It was like he was reading and artery road map. Lol. I never did ask about that. The right lobe anesthesiologist was the best. He put me really under but, I remember nothing, yet it was easy to wake up. The left lobe anesthesiologist was old and burned out, I think. He treated me as if I was a number and did not listen to me. The AVF anesthesiologist was OK but whatever he gave me lambasted too long. It took hours for me to wake up completely.
So, that's my unofficial evaluation of my recent anesthesiologists. Lol. 💞
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I appreciate all the support.
Looks like Xeloda and Taxotere is next.Any experiences??
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Leee- both treated me well. I was in xeloda for 5 years, taotere for over a year. You can Pm m
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Hi Leee,
Check out the thread called "all l about xeloda." I've been on Xeloda since early November and have found it to be very tolerable as well as very effective per my last scan! The thread can give you a good idea of what side effects you may experience and how to manage them.
Best Wishes Forward!
Katty
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GG27, I feel you. Leg weakness got so bad I started using a wheelchair for those long hospital corridors. I didn't take gabapentin because there was no pain, just numbing. The only thing that helped, frankly, was the dose reduction and the break from tx. I still have slight tingling in my fingers and toes, but at least have the leg strength to get up from any toilet - ha!
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BevJen I was on Ibrance+Faslodex for almost 2 years and then on Verzinio, Kisquali for a few months, Nothing worked. So My mO gave me a month break and started me on Gemzar IV chemo. Liver mets grew on Gemzar.
That's when I went for a second opinion to MSK. The doctor at MSK spent a lot of time with us and advised us to switch to MSK Basking Ride for future treatments. First thing they did a genetic testing inhouse (IMPACT testing) and found PIK3 mutation. So my next treatment will either be Pirqay or Halaven. Any words of wisdom regarding these two drugs?
Jaylea glad to hear that nueropathy has been improving. I have a terrible nueropathy due to Taxol and CMF, so the doctor has prescribed LYrica (Pregabalin) and it seems to help. For occasional tingling, I apply Robitussin vaporub and wear socks for some time. This really helps for few hours. Hoping this will go away after some time!
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S3K5,
I have no words of wisdom for you on either Piqray or Halaven -- but as I mentioned before, I would look at the threads on those drugs and perhaps reach out to others who are on them. But happy to hear that you switched oncologists to MSK. I grew up in NJ and a good friend of mine who still lives there has consistently been treated through MSK, including the Basking Ridge center, and has gotten great treatment there, so I wish you luck.
Bev
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I post with much sorrow the passing of our friend liwi (Barbara). She occasionally posted on this thread, and has been active on these boards since 2014.. She posted in early December that hospice was being considered. She did enter hospice and passed at home on December 16, 2019. Lifting her and her family up in prayers for peace and comfort during this difficult time.
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Thank you Jaylea for letting us know.
Dear God. Another one of us gone. I know we try to post positive vibes on here. And Yes we need to stay positive. But I looked at liwi's profile, she was diagnosed Stage 4 in 2017. Same as me.
Beautiful women are still dying of this DAMN disease. There is nothing positive about that.
Stage 4 is still a death sentence
God bless liwi and her family she left behind.
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