How are people with liver mets doing?
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Susan, No problem! All of our lists have so much info on them it’s hard to get the big picture. My MO never said “oligometastatic” but the breast surgeon did. I wish you the best in your treatments too!
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Hi Saulius, good to hear from you - what crazy times we're living in. I read your update too in one of the other threads; glad you're safe but damn, it's all getting too close isn't it.
I'm doing well. I've had two cycles of Trodelvy, but cycle 2 was delayed by a week due to low neutrophils & Cycle 3 is once again being delayed for the same reason. My LFTs however have come down to normal range and that is grounds for optimism as they were our first signal of progression in the liver.
I will have a scan at the end of the month. We were hoping it would be after 3 full cycles of Trodelvy but looks like it will be 1/2 way through the 3rd... I hope that gives us a good indication of whether it's working. Fingers crossed. Only a couple chemos left after this.
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Dear Moth, it is also very nice to be hearing from you! Apart from "meeting" you here, I also follow your blog and love so much these optimistic threads. I think LTFs back to normal is a really good thing, especially, as you said, while when progressing they were first up. Same happened with my Sandra - they went through the roof but then came down straight to normal after first THP infusion, and doctors were very surprised. Yes, fingers crossed. You are a fighter and an inspiration. Hugs,
Saulius
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Hi Saulius, it is very quiet on the threads as people struggle with the functionality of this site. It’s dry unfortunate and has me considering other options to connect with the stage IV community. Question for all: any recommendations? I am on Inspire but don’t find it as effective as BCO in terms of building relationships. I’m not a big fan of Facebook but think that’s likely my best bet. Nicole, you have mentioned specific groups before - advice please. 😊
Unfortunately things seem to be going down a bad path for me. I am having my second infusion of the 4th round of Eribulin today but am feeling progressively worse. Oddly, despite a relatively low tumour burden, I have had discomfort in my right quadrant since the liver mets showed up. I’ve been able to use that discomfort as my tumour marker as I knew when the tumours were shrinking on Capecitabine, when they were progressing after we stopped that chemo and when they continued to progress when Vinorelbine failed. Now the discomfort has stepped it up a notch and I’m having nausea, weird headaches that make me feel a bit dizzy plus I’ve developed pain in my right shoulder blade, armpit and down my right arm. I’ve tolerated the chemo very well up to now so don’t think that’s the issue. I scan on the 26th so will know more then but not feeling uber confident.
I am pushing for a biopsy and, while progression is not something I want to see, perhaps it will be easier if my mets have grown. Biopsies have been a challenge for me previously with no clear mass to sample. Maybe there is a silver lining.
Not sure how much I will be checking in going forward. I’m beyond frustrated with the site and the lack of understanding of the significant damage that has been done to the community which is the heart and soul of BCO. Discouraging to say the least. My thoughts are with all of you.
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sadiesservant - sent you an email
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SS...Yes lots of groups on Facebook and lots and lots of info from women.
So I have an announcement to make!!!!! My husband and I are going to be a.......
NONNI & POP'S!!!!!!!!
Our baby is having a baby!!! Our son Frankie and his wife Briana are about 10 weeks pregnant. They were trying for almost a year and the Father has answered our prayers and opened her womb!!!! AMEN!!! I am praying to not only live long enough to see the baby but to see him or her grow up some!!!
Just wanted to share with you all!
PS : he is our only child and this will be our first grandbaby they are not finding out the sex of the baby it will be a surprise!
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Congratulations Nicole! What wonderful news. I’m sure others will come along to send their good wishes as well but unfortunately now the technical glitches have extended to the new post counter. It’s not updating so nobody can tell if there are new posts in a thread. Sigh….
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Thought I would check in and voice my unhappiness with the changes to this site too. I agree with all the comments made so far and find the site slow with terrible layout and difficult navigation….certainly not user friendly. That said there is no another option that is as broad reaching as this one. Sadie, moth…do we have anything else in BC?
After I had a progression while on Piqray to my liver this fall, I’ve chewed through capecitabine (which did nothing) and am now on weekly IV chemo Doxorubicin. So far we’ve been using Tumour markers and Chest X-ray to assess effectiveness…levels are coming down slowly and less fluid in my lungs. My next CT scan is April 1 so fingers crossed. I keep my sanity by spending time in the pottery studio.
An
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Pots, that sounds good. Keep optimistic, and busy with the hobby.
Nicole, congrats! That is so wonderful. My wife and I are grandparents and its one of the best things in the world.
Sadieservant: I am frustrated by the site, but hopefully they will get the bugs worked out and we can put this all behind us. When is your next scan to see what is happening? You mentioned capacitibine, did that drug eventually fail for you? Or can you go back to it?
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Yeah! Back on line finally! It’s amazing how important this community has become.
Pots, I hear you about burning through treatments with spread to the liver! Xeloda actually worked for me but was unfortunately proving to be very toxic to my bone marrow. My MO had me stop after six cycles but we’re holding it in our back pocket Husband. I’m fairly certain that Eribulin is failing as I’m having much more discomfort in my right quadrant, more pain in my back (right side) which may mean the hydronephrosis in my right kidney is worsening and now, over the last week or so I’m feeling increasingly unwell with nausea. I scan on Saturday and gave my MO a heads up. (So glad to have my regular MO back. He’s a prince and indicated he would look at the scan on Sunday. 😊 )
On the plus side, this situation along with some nonsense at the office has finally pushed me to step back from work completely. I’m going to spend the next week or so tidying up loose ends but let my boss know yesterday that I need to focus my energy on myself. Nice time to cut the tether! I love spring and look forward to having time to actually enjoy my garden.
Hope the treatment is doing it’s job Pots. Sounds like there is reason for optimism. Take care all!
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Saddiesservant,
Look into alternative dosing schedules for capecitabine if you ever consider going back on it. 5 days on, 2 days off works for some. Also, lower dosages work well for some.
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EDIT***** its in Lung *****so there was something I didn't mention to you all.... After my scan they saw a "2mm left apical nodule not seen on previous exam. This is below the size limit of PET resolution, Attention on follow up"..... so ...my MO wasn't concerned about it..however, we are...we are praying its not new cancer...but I do have 2 trials lined up in case as next scan...it is... I was thinking is there any other scan that is quick and easy to follow up sooner than 3 months to see if it grows but then wouldn't it not be accurate bc it would be comparing to a PET and its not a PET (if its an Ultra sound, or CT etc..."... I welcome any thoughts. Thanks all...
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Nicole, was that spot seen on your liver? About all I know about the various scans, is that MRI gives maximum detail, but doesn't tell you about metabolic activity, which is typically elevated in tumors. PET scans do image based on metabolic activity.
If its in your liver, it could be something benign. Nodules of regeneration sometimes appear.
Edit: thought about this some more. Given that it is such a tiny spot, there is no imaging process that can screen it for being cancerous. The only two options are biopsy (which seems unlikely) or wait and observe.
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pots, we have nothing like it in BC. We have a biweekly metastatic zoom call which I participate in. It's open to all metastatic cancer pts so it's not just breast ca. We don't have a BC based msg board. There's a good Canada wide board - pm me if you want details of that one
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Thanks moth, I’ll have to check out the local zoom call. Unfortunately it clashes with pottery studio time that I have a membership in…sigh. I belong to a couple of CA FB sites already. Sadie, yay on pulling the plug on work!
I have a number of small spots on my liver that show up in the CT scan with contrast but weren’t measured. No contrast CT didn’t pick them up. I think the ability to measure seems to increase at the 2mm mark. Is that the case?And yeah monitoring seems to be the answer. Ann0 -
I know there has been a lot of frustration with the new layout but we need to keep in mind that this is a non-profit organization that is trying to do the best it can. Likely they don't have the funds to hire top-notch website developers. I personally have found so much information and support on this board for so many years and don't know if I want to move somewhere else. SS, I would be sad to lose your presence here and I'm sure the others feel the same.
Nicole, Congratulations!
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Has anyone had blood work pulled that included a ferritin reading? I saw a liver specialist yesterday regarding my most recent CT scan, which suggested possible pseudocirrhosis. The liver doc didn't think that that was so, but ran a ton of blood tests, some of which I don't think I've ever had. One of these was a ferritin test. My number was extraordinarily high (over 1900) where normal is in the low hundreds.
Will be talking with the doc once all of the bloodwork is in, but just wondering if anyone else has had this happen.
Thanks
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Re: ferritin reading- I was on Afinitor for ~ 5 months from last Sept. into this Jan. - started feeling really bad in Jan. and it looked like anemia from the Afinitor- they ran a few iron-related tests, including ferritin - my first reading at end of Jan. was over 5400; then I had a blood transfusion next day (Feb. 1); then started capecitabine (Xeloda) on Feb. 7 - most recent ferritin result from earlier this week is 979. I’m no longer anemic and CA 27.29 has also dropped significantly thanks to Xeloda. The ferritin testing was part of their anemia assessment for me, determining that it wasn’t iron deficiency but drug-induced anemia
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Pirate Girl,
Thanks for that info. Based upon the usual CBC/CMB that they run for me, I too am looking anemic (am currently on fulvestrant and neratinib.) This just blew me away. But I'll bet it's drug related, especially looking at your numbers. Wow.
It's not a test that I've had before, to my memory, so that's why I was curious about it.
Good luck on the xeloda. I couldn't handle it. My onc says that it's well tolerated. Curiously, the liver doc who I saw yesterday, who also deals with cancer patients, said it's been her experience that lots of people have lots of issues with it. I ended up on a very low dose -- 900 mg per day -- which the liver doc told me was the highest they've gone with xeloda because patients have had a lot of issues. It seems that if you can tolerate it, it's a very solid drug and does do the trick for most people. Unfortunately, that wasn't the case for me.
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That's interesting Bevjen. What were your issues with Xeloda? I have felt a bitlike the odd one out as it did great things for my liver mets but my RBC measures became increasingly out of whack. Not too low in terms of the RBC count and hemoglobin (Ibrance was the worst for me - Hb tanked to the point I was going to need transfusions) although continuing to trend downwards but the other measures (volume, morphology, etc.) were clear signs my marrow was struggling. I'll be interested to see if my MO wants to go back to Xeloda if the scan shows further progression. It's the only thing that has worked on my liver mets so far.
Thanks Susan. Still here and encouraged by the better load times and few (if any) access denied messages. There really is nothing like this forum and I feel I have made so many friends in the time since I joined. I completely understand the issues of NFPs as I spent several years working in that sector. I'm also saddened by the tone of some of the posts related to the challenges as it was clearly never the intent to have so many issues. My one frustration however is that the site redesign seems to have been driven by a desire to direct more people to the front end services. In the process, the designers have overlooked what is singularly the most valuable asset that BCO has - this forum. But I'm hopeful that the issues (the profile/diagnosis is one that I hope gets fixed asap) will be resolved and anticipate they will pull in a few of the more vocal members for further updates. 😊 In the meantime I'm sticking with it - may just need new glasses. LOL.
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Husband I edited the post sorry..it was LUNG...... and I do want to note..that when I was first diagnosed Stage 4 ...the IR that did my liver biopsy...told us something interesting... My husband asked him how can they tell just from a scan if something is benign or not? The IR said.."well...cancer "behaves" differently than non-cancerous things on the scans"... So to me..they pretty much KNOW if its canceous or not.. but it would have to be big enough to see that....
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Sadiesservant,
Re xeloda (with apologies to the folks on both threads) I guess I'm one of the outliers. I just could not tolerate xeloda. I was so sick. I was taking it with neratinib, and I'm still on neratinib so I realize some of my issues came from that, but I was very nauseous and literally could not eat. There was nothing that appealed to me -- in fact, food literally repulsed me. My doc kept playing with the dosage until we were down to just under 900 mg a day on a 7/7/ schedule, and I still could not deal. My blood numbers looked anemic, but that seems to be a byproduct of most treatments for me -- it wasn't enough to take me off. But when I told the doc I simply could not swallow any more of those pills, she agreed to a short break, which has now turned into a full break. My TMs did plunge on my time on xeloda, but it's not worth it for me. Not a way I want to live.
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Bevjen - I'm sorry that xeloda was so tough on you. If I was in your shoes, I would have made the same decision. And I did make a similar decision on Verzenio. It's crazy how we all react so differently to these drugs. Our bodies react differently and our cancers react differently. But I'm not taking anything other then xeloda. I'm 5'4" and 117 lbs and am taking 3000 mg 14/7.I'm in cycle 3 of xeloda - just took my last dose so I'm officially on a 7 day break now. Then I get back on the hamster wheel. My only real SE is fatigue and occasional pain in my feet. My feet kept me up last night but aren't bad today. 🤷
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RK2020,
Yes, it is interesting and odd how we all react differently to various meds. I assume that I didn't have much of the hand/foot stuff going on because I was on such a low dose -- but I did lose one of my big toe nails -- about two weeks after discontinuing xeloda, the nail just slipped off one day after a shower. Pretty weird. And I am a large woman, so it's especially puzzling that I took such a hit.
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My bad BevJen. I remember your experience now. It is amazing how unique we are in terms our reactions to these drugs. Just back from my CT scan. Now, I wait….
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So… my instincts were unfortunately bang on. My largest liver met has pretty much doubled in size and I have additional small mets. Damn. Eribulin has failed on the heels of Vinorelbine.
My MO wants to examine me on Wednesday and noted in his message to me that I had suggested going back to Xeloda. (Of course he put the brakes on that due to marrow toxicity but I suspect he’s getting worried.) I'm pushing for a biopsy now that the lesion is large enough. He seems amenable although always cautious given potential complications. So, things are once again in flux. Fun ride huh?
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Sadiesservant, I'm so sorry the eribulin failed you. Hopefully, the MO will be onboard with a biopsy and that it will give you more options. Not a fun ride, at all.
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sadie, sending you warm hugs. Getting news of a progression is a gut punch. I had a liver biopsy in the fall and it was easier than I thought. Are you submitting a sample to Foundation one? An
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Thanks both. I don’t think he is considering Foundation One. He isn’t a big fan of genomic testing as he simply has not seen results in terms of actionable mutations pointing to treatments he wouldn’t already have in his toolbox. I think now he is most interested in confirming ER status (to confirm if we need to drop endocrine treatments) and HER2 status with thoughts that this pathway may now be active. But this perception was from a brief email exchange. Will be drilling further
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sadie, sorry about this very sucky news
thinking about you 0
