How are people with liver mets doing?
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JFL so well put. I really feel that they are caring. We've been fooled many times, it discourages you, but this guy had all the depts. that could help her get in touch with us, and set up an array of appointments.
Blubird they did not put Dani to sleep, so sorry you had such bad experience, i don't think it should have been.Thx for the help w Faslodex.
NO102Nov I think it took like 10 days or so. You could actually call yourself F1 give them the info, they would speak directly to you. Zar is absolutely right. I called, sent them the POA from my DD to me, and they had no trouble in sending me the info.
Zar how was the treatment on typhoon day?
Grannax thanks for checking.
I was so wiped out last night, i went to sleep 9sh!! Ok i took 2 ambien in middle of the night, i did not want to think.
If i am wiped out i cannot imagine Dani, but she will NOT complain. It went very well. they were all terrific with her. But their faces when they spoke to me, spoke volumes. They - the nurses, Fellow they could not believe the amount of damage they saw. IR was a bit more reserved, but he told me also.
They do the angiogram, to see the hmmm architecture of the liver, they do the mapping, the same as when regular radiation to the rest of the body is done,then they send the person to Nuclear Medicine, they do a SPECT scan, it's very detailed 3D scan, they check if a person has no shunts or something not allowing the radiation to pass to the right places or worse that the radiation ends up where it should not.
So the results for her is that she is a candidate. So we were happy. You know when my kids were little and the doc said yep it's strep, i knew hey this is not a good thing, but i was so happy because i knew- ok, let's get that antibiotic and it will all be well, so something like this here, i know (we know) it's a tough procedure but it could help her.
IR said that there is no question it has to be done, otherwise any treatment that needs to be metabolized through the liver is not gonna work, the liver is really jeopardized.
BUT, it's scheduled ONLY for the 3rd. He is not in the Hospital that week only Friday. It might work out for her because she needs to get the other Rads and they did not want her to have a break, (she would need to stop on the day of theY90), like this if it's on a Friday ( e/o is fooling themselves, and just letting it go, knowing that Sat/Sunday there are no Rads here anyway). So RO agreed that she could start this Thursday.
BabyRuth thanks for the heads up with your experience, she really cannnnnnnot afford 6 weeks recup no way!. I could distract the kids a day, two but they need her up and around. As is, her sibs are helping out, but still trying to get things running at home.
I'll try to get the report tomorrow, we'll see the new Neuro, then i'll see what they really saw.
I'll definitely keep you guys in the loop.
You are all really my backbone.
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Mom, Thank you for taking the time to check in and give us an update. I am happy that Dani is a candidate for the procedure. It is good that things will be moving quickly. I continue to pray for Dani and for you. Please don't neglect yourself as you help Dani through these treatments. My thoughts are with you. We are all her for you.
Hugs and prayers, Lynne
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Anita- amazing photos. Thank you!!!!!
Grannax I spoke to moral and Dani's treatment will be end of next week. I think she's doing rads until then.
Babs
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Mom I am praying for Dani. It seems they have their stuff together and have a good course of action.
In prayer,
Mary
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Mom, I am so happy Dani was cleared for Y90. The procedure has come on the scene in the breast cancer world rather quickly but seems like it is just as quickly turning into "standard of care" for liver mets. Just another option (that is highly effective) amongst the chemos and everything else.
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Mom, I'm so glad Dani is a candidate! We are all waiting for positive news!
cool pic Z! Just a silly typhoon to add to your adventure? No problem right......
Bluebird, Sorry your biopsy was so traumatic. I only had the lidocaine also and had a minute to two of EXTREME discomfort. But I am also like Z, not really great with hospital stuff.
Wendy, I hope it is just a pesky 24 hour bug.
Spectacular photos Anita!
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Lindlou, if you can make the trip go in the Spring when the sun gets higher. Our world is so beautiful. I’m leaving for Africa Friday so I hope I get a few nice photos.
Hope everyone is doing good. Thank you for your kind comments. I’m not a pro but I get lucky once in a while😉.
Anita
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Joining the liver group now. (Hi, artist). I won’t go into the details as I did on the Abraxane board. But 2 small liver mets have been around since at least February but just confirmed with last week’s PET. Very small and seem to be responding to Abraxane. Just nowtrying to process another body part involved. I was bone only for about 3 years. Last year I added one (now stable) brain met. Now this.
I’m carefully reading your experiences and learning. Thank you.
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Photogirl (Anita) - oh those pics are just what I needed today! Thanks for posting. I know I'm a broken record but you are epically talented!!
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Anita - glad you are Africa-bound. One of my fav places, but too far for me to fly again. Which countries will you visit? Send pics! Smart to take extra undies just in case. I've been down vomiting/diarrhea the past 2 days - my nephew brought home a flu.
I had to postpone chemo yesterday, going in now. Momatt - I will pm you later. Z our warrior princess please continue to do well in Nippon. We are all waiting for good results. Kaption, I am so sorry. I have been off the boards sick and didn't read your progression. If I get any smaller I will steal my younger sister's pants. Just like when we were teenagers. lol0 -
Hello. This is my first time posting here and I would like to thank you all for sharing your knowledge and beautiful pictures.
Until this last month my Mets were all in the bone. I had a PET in Sept 2017 that confirmed it has moved to my liver and adrenal gland.
I was initially diagnosed with primary er+ pr+ Her- the hormonals seemed to have worked for almost 5 years.... Alas the pathology on liver biopsy has changed to triple negative...so bye bye hormonals.
This tnbc is a bit scary. In the last 3 weeks I have heard different names of possible chemos for me and was even considered for a trial. At times it feels like decisions are made to the flip of a coin and that really freek me out.
I was denied participation for the trial 2 days ago due to not having enough slides from my primary tumor. This you can imagine was bit frustrating. I'm not even sure why this was needed as the trial was for tnbc and my primary tumor was er+pr+....
Anyway I start Halavan (Eribulin) on Friday...hope it knocks the socks off those little buggers.
Wishing you all well with you current treatments and sending you all my love. Sorry this was so long.
Jena
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j1e1n1a. I see you live in Oklahoma, I'm from Oklahoma and have lots of family there. just curious where you get your treatment. I'm in Dallas area now, and have been for over 38 years.
I cannot imagine how frustrating that would be. Progression is scary to think of but if it changed/ mutated to a completely different cancer, I would freak out!
Hope you do well on new TX.
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Anita beautiful as always, you must be so excited for Africa . My sister moved there in September she is not so happy though u fortunately her husband works for a mining company so she is in one of those compounds. I wish she would have gone to your part of Africa now all I do is worry.
Momallthetime yippee friggin yeah so happ to hear some good news for Dani. I hope she finds this treatment works for her crossing all appendages.
Jena I hope I can call you that all the ones aren't so fun to type lol. Welcome to the group sorry you're here but you will find some great info for sure.
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NO1-2NV. I notice you are in NM too. We will generally have to go out of state but neither my doctors at St Vincent's or UNM ever explored out of state trials. You need a trial matching service that looks nationally.
After the first visit, NIH in Maryland will pay your travel and they are one of two or three places with the best immunotherapy trials.
There are several trial matching services. I just learned about emerging med … they are free and match you nationally. https://app.emergingmed.com/emed/home
The cancer research institute matches you nationally to immunotherapy trials.
https://www.cancerresearch.org/patients/clinical-t...
The other way to go is to go for a second opinion at an institute known for their trials like UCSF or MSKCC. MD Anderson is an option, but I had trouble getting through the gate there the one time I pulled that string.
Grannax - Monday was windy but otherwise pleasant and sunny. The super typhoon past in the early morning as I slept and I mostly missed it, which was a bummer. Another typhoon on it's way this weekend as I leave. I learned this week there have been 4 since we were here. Inland its just heavy rain with some wind.
It's Thursday here now and I had my second to last treatment yesterday. Just NKC infusion. Got to the Imperial Palace before the infusion and then headed off to Hakone for Mt Fuji fix. Got to Hakone late last night. Looking forward to a nice day tomorrow… we may actually see the mountain which I understand is not a given.
Anita - I love antelope canyon. Went there last year.
Mom - I appreciate the full report. Extremely worried but hopeful.
Hi Artist. I will take a typhoon over 4 hours in a clinic and 4 procedures, which is what the last day of treatment looks like Friday. It's hard to believe I can do this given where I started with my medical phobia. Amazing what we deal with. All minor IV's and shots but I could do without it entirely for sure.
Welcome Kaption. We're a friendly and upbeat bunch much like yourself.
Lalady - It astonishes me that we don't get a bye on the usual illnesses like the flu … it really does. Feel better and go knock of another chemo treatment. I lost significant weight on two low dose cancer IV's. I am not complaining.
Jena - welcome. Hope Halavan is easy and effective. Most treatment decisions have an element of throwing darts at the board. If you want more precision, consider Rational Therapeutics and Dr. Nagorny. He requires a chunk of tumor the size of the end of your pinky, which is not always available safely.
He tries a bunch of chemo on the actual tumor. Standard chemo-sensitivity training tries to grow your cells from a small sample to get enough for testing This doesn't work. Only 40% of the cancer cells grow in a dish so you miss most of them when you try to grow enough tissue to test with. Gotta getta chunk.
Getting a regular biopsy and genetic testing is another way to refine your options as they have some sense of which drugs respond to which mutations. I have long list of issues with this approach and a long rant at the ready to launch on anyone who gets too peppy about the promise of precision medicine. However, I had genetic testing done myself. I actually got actionable information from the report I am using the information to guide treatment.
Even with all this you will still be flipping coins to some extent.
>Z<
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Oy, I'm three pages behind again.
Momall, that's good news that you found such a helpful doctor and that Dani can get Y90. That should really help her gain time and put her in a better position to deal with drug treatments afterward.
Kaption, you dealt with that brain met; you can deal with the liver mets too. Go Abraxane, and get Kaption to stable or NEAD everywhere!
Lalady, flu, just what you needed, eh? (Not.) It's good you are able to go in today. If necessary I will distract your sister while you steal the pants. Be sure and get some good ones.
Jena, welcome. Earlier this year my onc and I determined that the cancer was no longer responding to the anti-estrogen therapies, so I moved to Xeloda. Mentally that was hard, but physically it hasn't been any worse for me. I asked some medical professionals at a conference if my diagnosis was tnbc now, and they gave me to understand that no, it is endocrine therapy-resistant ER+. That makes sense because the underlying biology is very different from tnbc, even at this point with it having evolved. I don't think my recent liquid biopsy showed typical tnbc mutations. Do your docs say that your liver tumors are tnbc, as in basal type rather than luminal A or B? Have you had any tumor genomic tests done? I'd like to understand this better.
Zarovka, we have all been on an amazing trip to Japan with you. Thank you so much for sharing. What a strange combination of sightseeing and cancer treatment. I hope Fuji-san is inspirational and powerful for you.
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JFL, we think alike. That heating pad might help, and at least it is unlikely to hurt.
Artist, I am so sorry you are having muscle trouble. I want you to be able to do your art and go about your day cane-free. Might you be off abraxane soon? Then hopefully healing will take place. (It's on your chart to never ever give you Cipro again, I hope.) Glad you were there for your beautiful daughter's wedding -- she looks like you-- though sorry it had to be during this chemo.
How interesting about the skin sensitivity and liver mets. About a year ago -- hmm, when progression was starting up -- I started getting a rash on my face from a mild sunscreen that I had been using without a problem. I switched to a zinc oxide one with a tint.
Z, thanks for the idea of employing a PDL-1 inhibitor at the time of Y90. I have added that to my notes.
Whoa, Linda, CEF. May it be easy on you and tough on cancer.
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My recent TMs were very low normal, so I am staying with Xeloda and making hay while the sun shines. Thank you for telling me that retrocath had reflux and bloating from Xeloda, Artist. The gyn onc said that if I had something going on in my ovaries enough to cause these symptoms, we would see it on my scans. And if in lower GI, we would see ascites. It might not show on my scans if upper GI had cancer, but since the symptoms have lessened somewhat and my reliable TMs are so low, my onc and I decided I would not see the gastro onc. We think it could just be the Xeloda. It seemed better on my week off last cycle. I seem to be prone to reflux and have had it more or less for years.
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Shetland/ Xeloda is notaorious for causibgvreflux. I had to get a prescription to help with mine. Once I was on one I had no problems. Something to look into.
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Thanks for that info, leftfootforward.
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Wonderful pictures Anita, thanks for sharing.
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Beautiful pictures Anita and have a good and safe trip!
Kaption - sorry to read your post this morning but welcome to the thread. Good to hear Abraxane is killing those liver mets!
Jena - sorry as well and welcome. Wishing you the best with your next tx.
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Shetland Pony. I apologize, but I must have missed some of your posts. It looks like you have progression. When did you find out? So, your y90 and TX kept your liver mets under control for two years? Now what are you doing? Can you have y90 again or some other local treatment?
I'm full of questions. I did see you had a rash on your face, too. That makes three of us. Kinda scary. My rash has gone away and I'll have a PET in November. It will be interesting to see what is happening to my liver mets.
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Hi again
Today I started my first dose of weekly taxol. Next week I'm going to get a port before the 2nd dose. To ease my panic the nurse was kind enough to tell me that there is a risk of collapsing the lung as they make room for the port!
The chemo went relatively well. Apart from becoming rather tired of the antihistamine I did not experience anything. However, as soon as I came home I noticed a very strong tingling in my hands and feet - especially in my left arm that also has lymphedema. The nurses said that neuropathy was a risk - but it would build up over time. First times I most certainly wouldn't experience anything. And not everybody gets it. Now already strong reaction after first dose - that's bad news I think.
Given that my tumors are very aggressive I have told the doctors that I prefer life quality to life length. And they understand that. I think neuropathy is one of the SE I will not tolerate - most people I've talked to describe this SE as hell on earth. The doctor told me on my consultation a couple of weeks ago, that the neuropathy would be the worse SE (+ loosing the hair). Should I get it, they might take me off taxol because the damages in most cases are permanent. I fear I already have to let go of taxol.
Right now my fingers have become so numb I can hardly write on the computer. Anybody knows if this early neuropathy might be just transient and disappear as the treatment continues - or is it a sign that I'm a strong candidate for serious neuropathy as the treatment goes on?
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In general, I don't believe there is a correlation between side effects and the efficacy of the drugs. Many people with no side effects are responders. Many people with side effects don't respond.
>Z<
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lisbet54 I did six months of Taxol feet were fine pretty much the whole time a little bit of sleepy feeling that was it. Till I stopped then the feet got bad when asked my onc said it's a type withdrawal. I was like super great when will,the feeling come back into my feet she said can take up,to a year or never go back to normal. Vitamin B complex are supposed to help regrow the nerve damage so I'm giving that a go
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Hi Wendy
Thanks. I know that neuropathy can come after you finished. But I also know that some get neuropathy, others not. Older women (my category) are the ones who most often get it and they also get it more seriously (knowledge from a statistic)
My question: If you are rather 'stricken' already after 1. dose - does it indicate that you're a strong candidate for a quite serious neuropathy - or might it just be a coincidence? (because I've been told that neuropathy usually comes later when toxicity has built up)
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Welcome Jena and Kaption. If I missed someone, welcome to you too.
Am off to research Y90, these lesions have to go.
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Thank you all for the welcome and positive wishes for my treatment tomorrow.
Grannax2 - I have been getting treatment at Integris in OKC since my initial DX in 2012. I realy like and trust my MO, but feel like I have a million questions now.
Wendy3 - Of course Jena is fine...lol. I didn't realize that the 1's would be so pesky until too late.
Zarovka - I will definitely look in to Rational Therapeutics and Dr Nagorny. I understand that there will always be a bit of coin flipping involved and pricision is probably not something that I will be getting...If I sounded like I was ungrateful for the effort my MO has put into choosing my treatment, this was not my intention. I think I'm just a bit overwhelmed with all the changes at one time. I did get a biopsy and they said the pathology changed. With regard to genetic testing I didn't have the BRAC mutation. I think I need to do a lot more research and start asking questions because you ladies are a lot more informed than I am.
Shetland - Yes they told me that the liver biopsy came back as tnbc. I plan on getting a copy of the report tomorrow since it does not show in my file online. I do not know about the basal type or lumina A or B but plan to ask questions. I don't know if they did any genomic testing on this biopsy or not but will ask tomorrow. I am obviously not as informed as I should be...feeling a bit overwhelmed.
Thank you all again for your help and support.
Jena
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Hi lisabet. There are new study results about icing hands and feet during infusions to help prevent neuropathy.. There also is evidence that acupuncture can relieve symptoms as well. I have neuropathy from my initial treatment on taxol. It lessened after treatment ended and mostly doesn't bother me.
Take care,
Mary
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Jena- For TNBC,you definitely want to give immunotherapy a shot, in case you are a responder (and response rates are pretty good for that cancer subtype)- and it should be even better in combination with some other drug. Also keep an eye on the developing CDK7 inhibitors, in pre-clinical studies they worked very well on TNBC, and I think the first ones have just gone into clinical trials, not sure if it is for breast or other cancer types- but keep them on your list. Best of luck!
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