How are people with liver mets doing?
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Dee, that is wonderful news! I am so happy for you!!!
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Husband11, would I be correct in guessing your wife has ILC?
Dee, you are taking calcium, D3, and magnesium for your bones. You might want to consider the COMB protocol and run it by your doctor. Mine had no objections except for the strontium, and I and my endocrinologist agree with her on that. I am not interested in taking bisphosphonates.
COMB (Combination of Micronutrients for Bone) study protocol:
(1) Docosahexanoic acid or DHA (from Purified Fish Oil): 250 mg/day
(2) Vitamin D3: 2000 IU/day
(3) Vitamin K2 (non-synthetic MK7 form): 100 ug/day
(4) Strontium citrate: 680 mg/day (NOT taking this)
(5) Elemental magnesium: 25 mg/day
(6) Dietary sources of calcium recommended
(7) Daily impact exercising encouraged
(Make sure the fish oil is a brand not high mercury.)
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Saulius, I am so sorry to hear about the positive lymph node, but I'm keeping my fingers crossed and hopes high that the CT is clear. Hang in there, this constant vigilance is so wearing on the body and soul.
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ShetlandPony- I am going to message MO nurse and ask for Guardant results. I was thinking a person could contact the company and ask for a copy, but I do not want to look like I am going behind my MO's back. So I will ask them if it is ok. I do want to peruse the results before my MO appt so I know what they say and can communicate better to my MO my options.
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It is not going behind anyone’s back to look at your Guardant account. You just say, “Hey, I noticed my Gurdant results are in. Would you please release them so I can review them before we meet? Thanks.” Look at it this way if it helps you: By looking at results online you are saving them the trouble of making a copy for you or emailing it. Candy, you are not a little girl who needs permission. You are an adult managing her own health and medical records. Assume you are a competent adult and others are more likely to treat you as one. I say this with love and a smile, my friend!
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Thanks Shetland. I guess I still think of the doctor as the leader. I did not want to look pushy by saying "I know the results already. I called the Guardant company and got them." Seems like I don't have trust in my doctor to ask them for results. Like I think they are trying to hide the results from me. Like I am going around them.
I do like how you worded it though.
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Candy,
I understand where you are coming from, and you have to do what works for you. But I agree with Shetland that gathering information about what's going on in your body from your doctor and from any sources you have available Is generally a prudent idea. Personally, I have had situations where doctors have just ignored things in my record, and they were things that in retrospect should have been discussed with me.
I am just the opposite of you. I see the doctor as the facilitator and the gatekeeper to further information holders. Frankly, I trust my doctors but only so far. I want to know what they know. I have caught errors in my visit notes, etc., and so I guess my attitude is trust but verify.
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Saulius - so sorry to hear about the lymph node. I sincerely hope that's the extent of it and that the little guy caught the cancer as others have indicated.
Candy, totally get why you struggle with "going around your doc". It's an interesting dance with MBC and, to be honest, I feel for physicians at times. They are sort of in a damned if you do, damned if you don't situation. My preference would always to have my results before I meet with my MO so that I am prepared for an informed conversation. However, I think there continues to be reluctance to provide bad news via email and certainly some would not handle it well. And yet, I think we can all read between the lines. I think I mentioned earlier that my MO is very quick to give me the scan results when all is well. When it's not... he delays. I recall when I was initially diagnosed in 2001 they lost my results for a bit and then I had "the call" that I needed to go in to see my GP. I instantly knew and the poor guy was uncomfortable when I indicated I kinda figured it out!
Sorry for the ramble but ultimately, as Shetland and BevJen have noted, this is our information and we should be able to access it as easily as the docs. Pet peeve as the paternalistic approach gets old...
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Aaww Saulius, that’s rubbish re lymph node. And we do all get that ‘tired of it all’ feeling....it will pass though. Try and plan something nice from you all to look forward to, just something simple like a picnic by a river will do the trick for me!
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Congrats Dee. Negative brain MRI is a very good thing. Celebrate
I have my PET tomorrow and liver MRI on Saturday.
For those with low magnesium, what SE do you have with it? Is fatigue/ weakness especially in legs one? I’ve changed to 800 mg of magnesium Glycinate daily. No diarrhea. Hopefully it will help raise blood levels in spite of Eribulin.
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Saulius, I am sorry to hear of the positive lymph node biopsy. Is there a spot treatment they can do such as surgery or radiation?
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Saulius so so sorry
. What is next to treat that?0 -
Saulius, ugh, sorry to hear that. Fingers crossed hard for excellent next steps.
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Saulius: Oh no! I am so terribly sorry. I hope it is only there and a PET or CT will show all clear everywhere else. The emotional aspects of this is so draining. Holding you, your wife and little boy in my heart. You have been such a support for us!!
LFF and KBL: I had calcific tendinopathy in my shoulder. I could not raise my arm up at all. Pulling a sweater on or off was torture. I was tipped off by my boss (a doctor specializing in virology/epidemiology who had had the same problem) about radial shock wave therapy. It was like a miracle. I went from keeping my hand in the pocket of a fleecy vest to support my arm to being able to swing my arm up and down after one treatment. After a few more, I was without pain and had full mobility. PT and all that other stuff did sweet F all. It is based on the same techniques used to break up kidney stones except you don' t have to be in a bath. My Extended Health benefits covered a good portion of it but I would have paid twice or thrice the full price just for the relief I got. Go Google it and then see where you can get it.
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Uh, thank you so much for all of your support. CT (yep, not PET) should be clean, except for that lymph node or a few others (they see 4 other very small ones < 2 mm). Our ultrasound guy last week was very confident and said "I know you, I follow you for years, relax, do not panic, everything will be fine". But we panicked. Actually, for the first time I was angry. We'll meet with our immunologist tomorrow and with the surgeon on Friday to discuss what can be done next. CT is on Tuesday, so results by end of next week. I am a bit frustrated that these lymph nodes are in level II and III, so surgery is more extensive and possible lymphedema in the future is no fun but gut tells me these are same HER2 treatment resistant clones that made the first local relapse. Biopsy again showed ER-/PR-/HER2+++. We have to calm down, listen to all your advices and fix all of this somehow asap as we do not like cancerous lymph nodes, even if they are tiny:)P Please, let us all hold on and cherish each other - this thread is amazing. I'll come back here as soon as I have any news. Saulius
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saulius- hoping for the best! I don't know about where you live, but there have been many advancements in lymph node remove to avoid Lymphedema. MDACC has a special protocol. Surgery is the gold standard but SBRT is showing great promise. We are with you in this!
ShetlandPony thank you for the protocol suggestion for osteopeniaHusband I will look into lactoferrin
There is a new osteoporosis drug that is not supposed to have jaw necrosis as a side effect - Evenity is a monoclonal antibody that is monthly injections for a year.
Grannax my SE is leg aches for low mag.esp at night in bed
Prayers of peace and good reportsfor all having scans soon.
Dee
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ShetlandPony- You would be proud of me. I went online and set up an account with Guardant. Called them. Report released to my MO today. Normally sent to patient 16 days after sent to doctor. They will push to me tomorrow if I call and ask them to. So tomorrow I should have report in hand. Hugs.
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Saulius, sorry to hear about the positive lymph node. Hopefully the scan will show all clear in other places.
Nicole, sorry about your pain. I started having this kind of stomach pain with my first round of dose dense chemo 12 years ago and later it re-surfaced when I started IV chemo for liver mets. My GI doctor did the endoscopy and found ulcer in my stomach lining. Now I take Dexilant 2x/day plus pepcid ((https://www.dexilant.com/). This has really helped. I used to take Protonix and a lot of other anti-acid medications, which really didn't help much. Hope your GI dr prescribes something for your pain relief. You have been going through so much.
Dee, great news about the brain scan!
I had a PET scan and MRI of liver yesterday. Dr called me today and told me that the scan looks good and the mets are stable. I will be starting the anti-androgen tabs tonight. Don't know what to expect in terms of side effects (fatigue seems to be #1 on the list).
Talking to the IR tomorrow and will find out about the local liver treatment plan. I am nervous about the Y-90 procedure but this is the only thing that will reduce my liver mets. Systemic therapies have been successful in keeping my mets stable but did not decrease the size of the lesions.
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Cross-posting from the liver mets resection, ablation, Y90 thread.......
Well, I am scheduled for Y90 on April 22, mapping on April 12. If all goes well, I will have treatment only in the right anterior of my liver, which includes Segment 8 (1 tumor) and Segment 5 (1 tumor). A good way to preserve the rest of the liver from exposure for now. And a good way to take care of anything else that might be small but active in this area.
I had a tumor (liver) biopsy (ugh) and it came back ER pos 80%, PR pos 30% and Her2 neg (I assume that's by FISH). I haven't gotten the path report addenda yet but my MO told me. My original tumors that are still quiet were ER pos (90%), PR neg (0%) and Her2 neg by ISH and low by IHC. So why is verzenio holding the 8 of them in check while 2 new tumors appear? I realize it could be any number of mutations, but I am not sure it's worth further testing (ie Foundation 1) at this time since we plan on zapping those 2 new ones and keeping me on verzenio for now. Anyone think differently?? God willing, the rest of them stay quiet!! And maybe no new ones for awhile. 🙏
My fear, of course, is that Verzenio stops working and those 8 become active again. These are the thoughts that bring me nightmares.
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S3K5....I wonder if I could stay on verzenio if I had a ulcer type med? The prilosec and Protonix...did/doing nothing. Im gonna message my MO and GI
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Nicole, have you had an endoscopy of your stomach to rule out an ulcer? Blood test for the bacteria suspected in causing stomach ulcers?
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hi all,
haven't posted much but i've got to ask some of you knowledgeable people about what could be going on. my mom presented with a 3cm liver met after 2.5 years of remission (original diagnosis was stage iv but only met was a tiny one to the spine, ER-/PR-/HER2+, and she did TCHP chemo and got a full response). they confirmed the same pathology for this met but tried kadcyla, it grew to 6cm. tried enhertu and now it's grown to almost 9cm!!! this tumor fricken tripled in size in only 3 months. that's freaking scary.
we're a little skeptic over the oncologist and if the HER2+ diagnosis of the liver met was even correct. did they get the pathology wrong? what else could've caused both these treatments to fail so horribly? should i find her a new oncologist?
she's going to do radiation now but it seems like there's not much chances. this is her only met but it's huge and unresponsive to HER2+ targeted therapies, and is growing fast. do you think her current oncologist is capable of continuing to treat her...
help
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macbookair2018, very sorry to hear about this. There are ablation therapies for tumors of the liver, such a cryoablation, heat, and other spot treatments that can target just the tumor. Also, a number of women have had Y90 treatment for a small number of tumors.
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hi husband, yes we have been looking into that! it's frustrating that at 3cm we could have done ablation or y90 but a few months later its at 9cm and it's no longer an option
frustrating that the doc made these calls and his treatment plans failed0 -
macbookair, have you yourself seen the pathology report for the liver lesion? I'd want to get a copy to read it.
If you have tissue samples from that biopsy, if your insurance will cover it or yu can pay for it, then you can also get a genomics test like Foundation One or Caris & see whether there are any targetable mutations such as P13kOr perhaps she might need a chemo again to knock this down if the radiation doesn't work? Unfortunately, tumors can develop resistance to the treatments, including to the her2 targetted treatments.
A 2nd opinion is always a good idea too if you're not feeling 100% confident in your team. I think ultimately we need to really trust our oncologists.
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moth, thanks for the insight. i have not seen the report. she got normal genetic testing done after her dx since she was only 46 at the time and no mutations came up so i don't think the tumor would have any either. i think you're right, maybe targeting HER2 won't work anymore, and that's really scary because there might not be another drug she can stay on long-term.. she really doesn't want to do chemo again, her morale is low and she's living alone now. but even if radiation works i'm fearful she won't have a systemic treatment to stay on
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Husband..I had 2 endoscopy when I was hospitalized for the severe stomach pain in jan and again in Feb....all was good no ulcer...just Acid issues...
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I just want to clarify, the genomic/next generation sequencing of the tumor is different than the genetic testing of the person. You can have different mutations in the tumor than the person carries and it can sometimes open new avenues of treatment. Not often, so it's a bit of a long shot - but still, it's a chance.
Also, just FYI, there is an oral chemo called Xeloda/capecitabine which doesn't cause hair loss. Many of the people here are on it .It's not a picnic & has its own weird side effects but it's often an intermediate step to IV chemo so maybe something she might consider & if it works it would be a good thing maybe? But ultimately, we all have to make decisions about continuing with treatment or not. The only way to really buy time is through treatment...and they're not all horrific. I'm on IV chemo for a year continuously and right now I'm feeling pretty well, doing Zumba 3x/week, going for walks with my dog daily, driving etc. With the right dose and the right meds for side effects, life can be pretty good. I hope you can read her this & give her some different perspective on how things can be
best wishes!
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first of all i'm so happy for you!! this is exactly the perspective i'm hoping to give her and i'll definitely show her this. i'm young and i want her to stay alive for me but more importantly herself. just show her that it's worth living and going through treatments you know?
and i'll definitlely keep the sequencing in mind if we are running low on options! i will have her look into xeloda next
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Nicole, if the endoscopy showed all clear (no ulcer) then staying on Verzenio should be okay. Verzenio is comparatively tolerable than many other oral regimens. If this keeps you stable, then maybe all you need is something to control the acid problem? Hope your GI doctor prescribes something that works for you.
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