How are people with liver mets doing?
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Saulius...T-DM1> do you mean Trodelvy? If so yes I have had the start of mouth sore...I am taking valtex ....
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Dear Nicole, no, I meant Kadcyla, i.e. an ADC for HER2+. Basically all ADCs hit PLTs, as the payload is still dissolved in blood or bone marrow (I don't know that exactly). Saulius
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LFF,
Started on Megestrol on the 17th. It looks like I am gaining weight back. I was 104 when I went in for an infusion yesterday. That's 4 lbs in two days. Some of it may have been my breakfast but not all four pounds. 70lbs is a lot on your small body! I lost 32 pounds since before becoming metastatic. I was 15-20 lbs overweight so I didn't mind losing some weight but prefer to be over 110. My Chinese Medicine Doctor has me eating 2 tbsps a day of a mixture of walnuts, goji berries, almonds, apricot kernels and black sesame seeds. You roast the nuts and seeds separately then grind them up. The goji berries are soaked in warm water for 20 minutes and then everything is mixed together. Looks like dirt with goji berries but it actually tastes pretty good.
Saulius,
What are PLTs? Platelets?
Hugs, Susan
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Ha Susan! Thanks for the laugh. Dirt with Goji berries. Sounds delicious. Lol. I also watch my weight closely. I’m probably down 15 pounds from my pre-MBC weight but that’s better than 25 pounds down which is where I was at one point. Seems so ironic given that I struggled to lose for most of my life and was quite heavy until my late 30s. (I actually finally lost a considerable amount prior to the BC diagnosis and often wonder if that’s why I found the lump.) Now I worry about the opposite. 🙄
Question for everyone. I haven’t actually seen my scan results but had my GP give me the lowdown over the phone today. It doesn’t seem to be very informative but there was mention of intrahepatic densities which is new. I’m assuming this is an indication of micromets in the liver which, to be honest, wouldn’t surprise me as clinically there have been a number of symptoms pointing to Vinorelbine failing. Any of you come across this in your scan results? My GP wasn’t particularly helpful but I’m trying to be prepared for a chat with my MO who I finally decided to reach out to despite his sabbatical. Getting nervous and the stand in seems to have gone AWOL
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Dear SusaninSF, sorry for PLTs - yes, platelets:) I should use these abbreviations less, my bad!:) Saulius
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Update. Question answered by my MO today. I was correct and apparently I have progression with a number of very small mets (the “densities”) so Vinorelbine has failed. On to Eribulin in a couple of weeks but, on the upside, no chemo on Christmas Eve.
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SadieServant,
So sorry that Vinorelbine didn't work for you. I won't know until my scans next week but I think Eribulin is working for me. My tumor markers have been dropping. I've found Eribulin to be much easier to take than Gem/Carbo which didn't work anyway.
Glad you will be able to enjoy Christmas Eve.
Happy Holidays to everyone!
Hugs, Susan
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brain mri on Tuesday showed no new lesions. First in a while like that.
I was told that I have a cyst that is now fluid filled and has grown in the past year. First I’d heard about it. They will rescan in 2 months and if it’s bigger or changed in shape, I wil need to surgically remove it. Hoping to avoid that for lots of reasons.
So overall good results. Brain and liver both stable in current regimen imof kadcyla every 3 weeks and Tukysa everyday.
Happy holidays to everyone.
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leftfootforward, ok a cyst is not good news but no new lesions is definitely worth celebrating, good to hear other stuff is stable.
I hope everyone finds peace to enjoy the winter holiday xx
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Leftfootforward- Good to read of your good news. Take care.
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Grannax2, I am thinking of you.
Haven't "seen" you in awhile so I assume you are fighting your personal battle right now.
Hope you are able to be with family during the holidays
S
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Sadiesservant,
Sorry about the small "densities" -- but glad that you were able to reach the MO you trust. I hope the next treatment is more effective than your current one. And that your regular MO comes back soon!
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Sadiesservant sorry to hear your suspicions about progression were correct. That sucks. Enjoy the chemo break & regroup . Hugs
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LFF,
Happy to hear you have no new lesions! Looks like the Kadcyla and Tukysa are working.
My brain lesions were all cystic, as far as they know. Perhaps your cyst is benign?
Happy Holidays to you and your family!
Hugs, Susan
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Sadie...good luck with Eribulin hoping you do very well on it!
LFF good news...keep us updated about the cyst.
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hi everyone, sorry to have to post on here, but have following for a while. I was diagnosed with stage 3 breast cancer in 2011. Had 6 doses TAC. Started on arimidex and 2017 diagnosed with bone cancer. I have a lot of pain. Meds changed to Ibrance, faslodex and zometa. Dx with liver cancer 2021 and meds changed to afintor and another one that starts with ‘a’ but can’t remember name. I am concerned that my onc does not want to do bx. Also I have felt lumps around my implants, and both axilla and sternum. Some are painful and some are not. I am scheduled for PET scan on Jan 14. Have any of you had these lumps? I also have had deep penetrating pain in hip and knee. Usually starts at night and last until I take a pain pill. Sorry for this long reply but very concerned. Have been reading this site for a long time and feel like I know you all.
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beauty,
I think you are saying that your breast cancer has metastasized to your bones and liver, not that you have bone and liver cancer. Is that correct? Bone cancer and liver cancer are very different from breast cancer mets.
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Dear LFF, congratulations on scan results, they are really great!
Dear Beauty4u, you are absolutely right, biopsy is definitely needed, and the sooner the better. Things could have for sure changed since 2011 initial diagnosis, and you have been through many drugs. These lumps should be easily accessible, as well as probably liver.
Happy holidays to everyone. And happy coming New Year. It is 2022 already... I wonder what it will be like in 2222, can anyone guess? At least I hope in 2222 oncology drugs will be better:) Ahh... Hugs to everyone,
Saulius
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Hi all,
I am terrified that my mum caught covid.. she has low grade fever and headache. Double vaccinated with Pfizer and on ibrance. Anyone know where to go from here ?
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Daughterof,
Your Mom should get tested as soon as possible.
Hugs, Susan
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yes it is mets to bone and liver.
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Thanks for the clarification. You don’t have bone or liver cancer, you have metastatic breast cancer and will be treated for breast cancer, not bone or liver cancer. Take good care
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beauty, your deep penetrating pain is likely from the zometa. zometa is a bone strengthener and one of the most common side effects of bone strengtheners is bone pain. I have it monthly after I receive my faslodex and xgeva (another bone strengthener).
I know you are scared right now but you need to insist on a biopsy. They can't properly treat you if they don't know what kind of mbc it is (hormone pos, her2 pos or triple neg).
gentle hugs honey, one step at a time.
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Hi beauty4u, sorry you're feeling pain. As suggested, it might be from zometa or one of your other treatments. Many of the hormone blockade drugs used in er+ breast cancer cause joint pain. Managing pain is part of your oncologist's job so be sure to tell them.
Definitely you'll want to start thinking of all.of these as breast cancer with mets to liver, bone etc. It's all still breast cancer... it's important because treatment for liver and bone cancer are different than treatments for breast cancer metastasis.
This biopsy question is imo not always black and white. If you're responding to treatment, I can see why a dr wouldn't rush to biopsy. There are risks involved with biopsies, and sometimes the lesions are not in a readily accessible place.
Fwiw, I started stage 4 tx (& a clinical trial!) with no viable biopsy. My lung met was neurotic and they refused to go for any of the liver ones. I did have a successful lung biopsy a year ago, about 9 months after treatment.
However when you stop responding to treatment or have significant progression, I would want to at least consider a biopsy to see if your hormone markers have changed (marker loss is not uncommon).
Has your dr examined your lumps near your implants? Best wishes for your pet scan
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Hi Beauty,
I would echo Moth. I find in Canada, at least here in BC, they are not quick to biopsy if they know the original cancer was HR+, etc. I did get cells from my pleural effusion but that has been the extent of the biopsies I’ve had with the exception of my original lumpectomy. My MO is not a fan of invasive procedures and for the longest time there was not much to biopsy as bone is difficult and I don’t have any lung nodules. He is still not keen even now with liver mets as there are risks. It seems to be a philosophical difference between oncologists.
Having said that, I have done very well following his game plan, responding well to hormone therapies. I appear to now be endocrine resistant after five years of treatment and will push for a biopsy if I don’t have a durable response to chemo. He did jump on the opportunity to do a circulating tumour marker test but it unfortunately came up empty in terms of anything actionable.
Hope you can get relief from the pain but do follow up with your MO right away. If it’s from the bone mets then they will likely suggest radiation which can do wonders in relieving symptoms. I’ve had four different treatments to deal with pain and each one has worked brilliantly.
Sending a virtual hug.
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thank you all for your input! The pet scan is for the breast lumps and hip. Hopefully will show what all those lumps are! I have had radiation when it went to the bone but unfortunately did not help. Thank you all for taking the time to talk with me! I’m in awe when I read your stories and I will pray for you all
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Dear Beauty, I echo the above advice. My original breast ca was hormone +, as were bone mets, but biopsy of liver mets revealed triple negative liver mets. The only treatments that have worked for me are targeted at triple neg disease.
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Hey Susan, Thinking about you as I believe you have a scan this week. Hope Eribulin is keeping things under control.
Thank you all for the positive thoughts. I meant to post but it’s been so quiet on this thread. I’m a bit nervous about Eribulin as it seems to have its challenges but will be glad to get onto active treatment. The break is nice but…. 😊
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I got my ct scan results and I have progression. Big one in the lung but also a new 1.9 cm lesion in the liver (in addition to a bunch of stable masses in the liver). Ugh. Looks like a switch to trodelvy is in the works.
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sorry to read Moth. Can they biopsy the 2 new tumors to check to see if they are the same as those that are stable? I know biopsies aren’t fun, but it’s possible they are of another type than your stable tumors. If so, maybe you could treat those separately while staying in the treatment that is keppug the rest of your cancer stable?
Hugs to you as you have to navigate the new progression.
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