De Novo Stage IV
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Prairie sea,
I’m sorry to hear about the new liver Mets. I think a biopsy is a common procedure when Mets show up somewhere new. I have the same questions you do about what the treatment for when there is more than one receptor combo. In my case, I was NED after a liver ablation of residual/inactive Mets last Feb. All was good until this past Dec. when new liver Mets showed up in new segments. It turns out I had flipped from ER+ to ER- with the new liver Mets. Not long after, a suddenly large lesion on my spine was causing severe leg pain, so it was excised in surgery, then cleaned up with radiation., and turned out to be ER+.
I’m set to start my first infusion chemo tomorrow, GemCarbo. I believe treating the liver Mets takes priority over other Mets because the liver is a vital organ for life. I think my MO is “hitting it hard” with a drug combo that works on the liver, but that he calls tolerable. I can’t say what type of treatment you’ll move to. The biopsy will partly determine that, along with your doc’s expertise. Please let us know how you’re doing. I do read the liver Mets thread but I’m sure not everyone here does. Also, best wishes on your work life. I hope everything works out.
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Thank you so much KBL, cyathea, SondraF and rosie24 for your concern and information, it all means a lot. Good to know some liver mets patients are able to keep on going with proper treatment, and that hard-hitting Chemo is a common first step. I have developed trust and a good rapport with my MO after a somewhat rocky start, but am still wondering whether a second opinion might be in order, though if it can't be arranged before he wants to start treatment of the liver I think I should go ahead. Meanwhile I think I'm going to head to the ER today; one headache last night was accompanied by vomiting, so I think they should be looked into.
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prairie see, I learned a lot from bco members, I think first step is biopsy and some genomic testing like foundation one, with that information you and MO will make an inform decision for next steps. It is overwhelming and we are here for you, please let us know how you are feeling when you can. I am sorry on top of everything you are heading to er for headache, best wishes on your way for good results. You are in my thoughts.
As for professional goals and job, we are all related.
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Rosie, I am sorry you have been through rough lately, I hope you feel better after surgery, best of luck for tomorrow. Hugs
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Thank you Snow-Drop! 😘
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I’m sorry I haven’t come here today before now.
Prairiesea, you are in my thoughts. Please keep us posted. I hope they can figure out what’s going on and help you quickly.
Rosie24, I’m also thinking of you. Please also keep us posted.
Hugs to you both.
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prairiesea - thinking of you in the ER tonight. Hoping they can find the cause of your headaches. I have liver mets, and I'm not sure how much my experience will help you. I was dx'd de novo with large and numerous liver mets and was treated with Verzenio/anastrozole, which brought me to NED fairly quickly (7 mos). I see this is progression for you while on Verzenio.
Besides the liver mets board, there's also one for local treatments for liver mets that you may want to look into. Depending on the number, size, and location, you may have other treatment options (e.g. microwave ablation, SBRT, y-90). Not all MOs are as familiar with or likely to recommend local treatment, so having some information before you go could help you have additional questions.
ETA the link to the local treatments discussion:
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Dear Prariesea, uhh, you need a plan. Once it is in place, you will feel more reassured. It is good that scans are scheduled earlier. I know how tiring that is but if something, please do not forget that you can go for a second opinion. As Seeq said, local treatments can be extremely effective and should also be considered. Limited liver mets can be controlled with chemotherapy or other agents and then SBRTed with minimal side-effects. Staying focused on yourself is important - just look how devoted you are to your students and how much of yourself you give to others, so, please, do not forget about yourself too. Please keep us posted if you feel like it, we'll try to help as much as we can. Sincerely, Saulius
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Thanks everyone, as usual this community is so generous with concern and suggestions, even when, like rosie, you are going through your own ordeals.
Sadly, mine has become even more distressing. CT scan, brain MRI and Lumbar Puncture in ER all point to leptomeningeal carcinomatosis. Definitely drew the short straw. Admitted to hospital so the Onco team could gather and come up with a plan. Meanwhile I have done a lot of research trying to move from panic to resolve partway there. (I also slept well, which helped) Even found a clinical trial that maybe could be possible. I do have a request....could someone please remind me of the member with the helpful, elaborate guidebook about MBC and treatments? I think her user name is BestB but I can't seem to search her. I would like to look at anything her guide has to say about this.
More after I talk to the doctors. Love and gratitude.
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It's BestBird. Not sure of caps or spacing. I think her name is Ann Loesser, I can get you a link a little later if you still can’t find it
Oh PrairieSea, I'm so sorry to hear of the brain involvement! I hope your team comes up with a plan asap to get treatment started.
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Prairiesea, I’m so sorry to hear this. I thought I saw an article about lepto a few days ago. I’m at doc’s for monthly appointment, but I’ll look for it when I get home. See if this link will work for you.
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Thanks all. I did find BestBird's guide on Google, and it was very helpful. I have seen the on call Oncologist, who has been in touch with my usual MO, as well as Radiation Oncology and Neurology today. Asked about clinical trial which they did not rule out as well a 2nd opinion referral and they were open to that too. It does sound like I'll go ahead with WBR soon (goodbye hair) and then we'll see about chemo; Neurology doctor didn't seem to think shunt was immediately necessary but that could come later to reduce pressure. Haven't yet asked the prognosis question but feel I need to in order to think about how I want to move forward with my own life. It's feeling more doable in the short term and the fact that I am in good condition except for the mets seems to make them optimistic....but they were optimistic a year ago and now here we are. Likely to be in hospital a few more days--they will also get a liver biopsy to check the new mets there and intend to treat them as well, perhaps finding out if there are more treatments available because of possible new HER2+ status. I think I probably won't make online meeting today.....I'm more in control about this in text than speaking and need to marshall my energies for the next week.
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Prairiesea- My prayers to you.
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Prairiesea, for the most part, our meeting today was Donna giving a presentation on IBS. It's being recorded, so it can be watched later. I am thinking of you.
I can’t find the article that I referenced. I’m sorry. I do believe it was about clinical trials, though. I hope you can get into one.
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prairie, you are in my thoughts as well, wishing you the strength you need for what lies ahead xo
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Prairiesea, if you are HER2+, perhaps Tukysa with Xeloda might be an option after WBR, if not, other chemo’s are able to cross the BBB better after radiation. Of course this is not a great scenario but options do exist. I’ve had suspected lepto mets 3 times in recent years, ultimately unconfirmed but likely in my future. It’s a tough one to deal with, even potentially. I’m sending out good vibes to you.
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prairiesea- so sorry to hear of the possible lepto dx. Hopefully, your docs or a trial will come up with a good treatment plan for you. I like your description of moving from panic to resolve. It shows a strength of spirit we all want.
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Prairiesea, thanks for sharing what’s going on, I ditto seeq on quoting from panic to resolve. Best wishes for you. It is great your team is open to other options like clinical trials, because with experience and resources they have, they can find some good trials for you.
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Thanks everyone, your care, concern, and advice mean so much. Two days of very busy schedule of tests and radiation, I think they are all done now and I'll be discharged tomorrow to continue WBR outpatient and wait for results of cytology on spinal fluid and liver biopsy (last test today). Tomorrow 3rd WBR treatment. Will be on brain mets thread to ask a little more about this, whether its reasonable to think I can teach a few classes next week. Would like to see students once more if I don't feel too wiped out and then perhaps find people to fill in the last three weeks, especially if I start chemo. Doing my best to stay hopeful....harder than last year's initial diagnosis, but, on the other hand, the alternatives are worse, so, hopeful but realistic. So, looking into retirement.
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prairiesea, you are in my thoughts. I'm glad the testing is over so far and hope you can get into trial soon. I can see you love your job. I hope you can make it in to see your students. Hugs
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Prairiesea,
So sorry to hear of your recent health issues but thank you so much for sharing. This community is so supportive.
I send healing energy to you every day!
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Prairiesea, thinking of you. Let us know how you're doing when you can. It looks like you haven’t been in the site since April 7th.
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Hi ladies, this thread has been very quiet. I hope you're so doing well and are just busy with life.
Prairiesea - thinking of you. I hope you can get back to us after your WBR.
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hi.
Life can be busy. I hope all is stable.
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I’m doing well. My daughter, son-in-law, and grandson are in the process of moving in today. I’ve been cleaning and decluttering for weeks. It doesn’t take long for a 3/2 house to seem small. Lol. They are selling their house and building a new one, so I get to enjoy my grandson every day.
I hope you’re all doing well.
I wrote prairiesea privately with no answer. I’m worried about her. She hasn’t checked in.
Hugs to all.
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I got the gastro under control and then Thursday afternoon some sort of muscle spasm/pain set up shop in my right rib cage, making it difficult to draw a deep breath. I think its coming from the ribs/intercostal muscles, but I haven't done anything strenuous in the last two weeks to warrant this. So breathing is shallow and Ive got some fatigue and lightheadedness. Its a long weekend here so trying to keep it together until Tuesday when I can call in - I scan this coming Thursday but I dont know how ill get a breath big enough for the CT!
This month has just been awful and I honestly hope this turns out to be a gallbladder issue they can dig out and be done with.
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So quiet on this thread.
Sondra: I hope the ribs turn out to be nothing, just one of those weird things that just occur.
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Ugh, lost my post by exiting before it submitted.
Sondra, I’ve had something similar sounding about a month ago. It felt like I overstretched the right side, and I felt zapping spasms when I moved or tried to take a deep breath. I took a muscle relaxer pill for 2 nights (had them already) and it was better in about 3 days. I didn’t mention it to my MO but I will if there’s a next time. I didn’t think it was cancer related but who knows? I hope your CT goes ok and you can manage the breath holding
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rosie, thats exactly what I feel I need. Like a Valium or two would iron this right out. Unfortunately I don't have any in thr house, but will ask about it next Monday when I see onc.
Going to try the low fodmap diet for a few days to see if that will help calm things down too.
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SondraF - Hopefully, it's your gall bladder acting up and nothing cancer related. When I had some pain like that my old PA attributed it to sludge moving through the gall bladder - no surgery required. My MBC was dx'd 7 mos later, but the pain I was starting to feel from the liver mets then was not sharp or...urgent, if that makes sense. Whatever it is, I hope the pain subsides and you can manage your scans.
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