How are people with liver mets doing?
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Bluebird, you must be floored by your doctor's notes. Wow. I am shocked at many things that were written, especially given your commentary on your take of the appointments. The whole no palliative while on treatment philosophy - I always thought palliative was quality of life and pain relief and should always be given with treatment. Palliative does not necessarily equate to hospice. They are separate components. All treatment is considered "palliative" rather than "curative" for stage for since Stage 4 is technically not considered "curable". Those notes are certainly used for CYA purposes. Must feel a bit demoralizing as you had such high hopes for this new MO. I am afraid to get my notes now. It would just be unbearable to have to read grim prognosis statements from my MO. You are a trooper for having to deal with that. I did have to get my doctor's notes from my prior MO when I was early stage and was so fired up about various comments - about items that seemed more personal than directly relevant to my treatment at the time. I can still recall the exact statements in the report that irked me 11 years later.
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the other thing I forgot, results of the liver ultrasound. The two lesions had been rapidly growing. There had been a lot of pain, I thought it was dying off, but it was active growth. In afew months the large one went to 59 x 37 mm. That was October 2.. I had pain another month then started the red and vblack raspberry seed powder plus the raw hemp oil. Pain stopped. Took that solid for 6 weeks. The large lesion was only a little larger which likely happened during extreme pain in October. Other lesion, same. A third lesion in front that I felt growing around mid-October is very small. Considering an ultrasound of supraclavical too. I am looking forward to someday having a PET CT and see what the SUV uptake is. Meantime I am doubling up on the stuff. And securing a new oncologist and the best therapy.
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i did have such high hopes, JFL, he is the specialist after all.
Z once you said on some thread that you don't trust afinitor. Will you share your reason? Or was your decision after personal testing on what is best for you?
Edited to add - Z net mind, I finally found it when there was a lengthy discussion back in May of this year. What I am most concerned about is the lung issue. And the new onc' s opinion that it will be of little effect for me. I'm looking for another choice, frankly. And I don't mean taxol infusion. Maybe faslodex revisited with ibrance. Since he has such a low hope of my survival then I think I should be able to choose whatever I want. Hope the new onc has great ideas.
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Babs. My recovery from y90's and SE are detailed on the local treatment thread in April and May. In general, it wasn't too bad for me. It took about two weeks to recover from each one. I had trouble with allergic reaction to iodine contrast for CT, even with pre meds. I remember having right shoulder pain along with back pain near shoulder blade. This is called referred pain from liver. There were other things but nothing that stands out in my memory.
I'm sure you'll have a wonderful visit with dd. Will this be your first grandchild?
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I could google it or I can go straight to the source: you guys! I have a 6 cm liver tumor no pain. I just had a biopsy to see if it has changed ER/pr/her status. But I’ve started thinking after reading posts here; what is Y90? What is TECLA? And what is Ablation? And would any of it help in my case you think? He’s already switched chemos from Abraxane to Gemzar. I’m sure this has been discussed before but I’m fairly new to the liver thread.
Aurora
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Auroaya. I can tell you a little about y90, I had that TX for my liver mets and it worked. Lots more details on the local treatment thread about my experience.
It's performed by an Interventional Radiologist and is called radioembolization. The radioactive spheres are placed in the liver tumors through a procedure similar to an angiogram. I had mine done in April and May. I had about eight tumors in both lobes, so it was three procedures for me, mapping and two y90.
As of August PET, none of the tumors showed any uptake. My next scan is in January, I'm hopeful it will be the same or better.
I was referred to the IR by my MO. Each patient has to be evaluated to see if they are a candidate. Ask your MO or research an IR who specializes in y90 and call for an evaluation. Hope this helps.
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Hello! keeping up with the posts, but feeling a little brain dead when trying to keep up with all of info on trials, etc.
Still playing the waiting game with Fulvestrant. Going for 3rd loading dose this Friday. Still having right side pain which is mostly tolerable.
So proud of everyone and in awe of your strength, wisdom, and humor.
May the force be with....... MJH
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auroaya,
I had ablation. It is when they go in and burn off the tumor. Since you only have one tumor, you may be a candidate depending on the location, but they would want you to do chemo first to see if it would shrink .
Laurie
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Bluebird-DE: Your account of your experience with your MO is truly chilling. So sorry you are having to deal with this. I hope you will be able to find another MO with whom you have a better rapport. I have found errors in my medical records that are troubling ... but I have not read many of my MO visit reports (guess I ought to do that). I have learned about concerning imaging results not shared with me; lost lab specimens (about which I was not told); incorrectly recorded family health history related to breast cancer; incorrect information regarding drug allergies; erroneously recorded symptoms; and even a quite significant error in recording that I had a mobility impairment implying that I was wheel-chair dependent (I have no mobility impairments and, in fact, make a rather arduous commute to work on foot because my employer has declined to provide me with on campus parking despite my Dx.... but that is another story....) I've also had this odd experience of feeling pressured by a couple of docs (not my MO) to sign a DNR. It's rather troubling that this information can make it into our medical records ... and may impact our care. Whether the cause is simply human error, carelessness or bad judgement, it just goes to show, we have to be consistently vigilant about our care. I am always impressed by how well-informed the members of this forum are. There's no doubt, being a well-informed, squeaky wheel causes the health care establishment to pay attention. Thanks for sharing your experience.
Kacy2: I an ER/PR-, HER2+ (same as my early stage) and have mets to liver only. My first biopsy they missed the tumor and had to re-biopsy. I am getting taxotere+herceptin+perjeta. Recent MRI showed modest decrease in size of liver tumors. I think that was after 3 cycles. After cycle 6, I will get a PET scan to further evaluate response. Good luck!
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hello - I read here often, but do not post... I am ER+/PR-/HER2-. I was in a trial after my initial diagnosis, Stage 2b. I did the usual A/C/T combo, but was also given Herceptin for one year. Mets were found less than a year after my last dose of Herceptin. I said to my MO ‘I guess I failed the Herceptin trial?’...
I failed Ibrance/Letrozole, then Gemzar, and starting Kisqali/Faslodex next week. Prayers to everyone that a cure is found in our lifetime.
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Lumpie. I totally agree the squeaky wheel, well informed patient can cause the healthcare system to pay attention. Medical transcriptionists can make a huge difference, too. My friend owns a transcription company, it's appalling to hear her talk about the mistakes she sees. Unlike most companies, she fixes the mistakes! If it does not make sense, she contacts the doctors. We need more people like her in this industry.
I have personal experience with challenging/firing doctors, too. In fact, my MT friend says my intervention back in 2000 saved my life. It was so painful, though, to have my trust broken by doctors i trusted. When will their mind set change? How can they keep getting away with talking down to us? Fortunately, I have an MO now who doesn't get too offended by my questions. For the most part, she seems to respect me and my experience. She even finds a way of making up for it when she sees I'm offended by a remark she made. MO's have bad days, too, just like we do. I like human docs, those who don't have a huge ego. She's not at MDA, shes not even a BC specialist but she's smart and human. ( I did consult with BC MO at MDA and will again, if necessary) But, unlike other MO's, she wont be offended if I do.
KC1010 I'm still on first line therapy for my MBC. Although, I wonder what TX I will be on next. I have PET in January, so I'm in scanxiety mode. Ugh. Always wondering, I hope your combo works for you. Who knows, it might be next for me. I hope for a cure in your lifetime, I'll turn 70 on Christmas Day. So, I think it's doubtful it will happen in mine.
Let's all have a Merry Christmas, in spite of MBC.! 🎄😁
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Thanks, Grannax. I've been following your story, and have asked my MO about localized treatment to my liver on several occasions, and I'm told that I'm not a candidate. I have several small mets in both lobes. Gemzar had them stable for all of 3-4 months. My TM's kept going up on the Ibrance combo, but then came down nicely each month on Gemzar. The scan results this week were very surprising...we thought for sure I'd be stable, but instead had progression in all areas--liver/bones/spleen. The Guardant360 test shows that Faslodex should work for me, so I'm hopeful. I just turned 50, and we have a 5.5 year old daughter. I'm convinced that all of the infertility treatments/hormones I took to have her sped my cancer along...maybe even caused it? I wouldn't change a thing though--we went through a lot of heartache to have her, and we prayed and fought for a long time--she's the light of our lives. I just hope to live long enough to see her settled into a nice life, surrounded by good people. Odds are against me, but I'm going to keep fighting the fight as long as I can.
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I am on a trial at Sarah Cannon Nashville that involves Oliparib and a Wee1 inhibitor. I am happy to report that after 4 weeks on the trial, my TM's finally came down. I pray that this drug combo will work for me for a long time to come.
On a down note.....I had to stop the drug for a week due to low platelets.
Sometimes it takes awhile for these meds to kick in, so don't get discouraged too soon like I almost did!!!
Robin
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KC1010. You are so young! Yes, your daughter is a priceless gift. She's your future, your happy place. No regrets. Keep up the good fight. This will be such a fun age for her this Christmas. At five, Christmas IS magic. 🎅🎄👧
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KC1010 - I am in my late 50's and not happy with Mr C either as I support my 13 mo old nephew plus a wild black kitten.
Had to fire (threaten to sue) first cancer dr at Cedars - then switched to UCLA where I am in good hands. Nuff said. For what its worth, my UCLA onc who did Palbo study thinks ribo is too close of a cousin of palbo to switch most ladies after Ibrance fail. He prefers Abemaciclib which can be a mono therapy if you are AI resistant. Please ask about Abe vs Ribo. FYI I am finishing 5 mos of Abaxane which is working well. Did you have any discussion on that med before/after Gemzar? It is milder (as far as IV chemos go) but very effective in the bones and liver, and from my observation more effective if you are younger. I am still working part time, had IV chemo yesterday and maybe on a bit of steroid high, but please stay positive! We are tough rock stars here and this thread has the most astute women ever! I genuflect to Z, Cure-ious, Husband11 and the lovely Shetland Pony. Good news is I'm moving to a pill in Feb after Jan PET - either X or Tamox + faslodex. wee~Claire
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Claire - my MO mentioned Abe vs. Ribo, but after doing research and talking to colleagues (one was my 2nd opinion doc in another practice), she fell back on Ribo. According to my Guardant360 test results, Letrozole and Anastrozole would be ineffective on my cancer (duh), but Faslodex should work. I wish I would have had the Guardant360 test before I ever used those drugs... Abraxane was mentioned, but mostly in passing. Good to know that I have this as an option when it comes time to switch. I just started back to work full time in late October after taking 6 months of STD. I was not eligible for LTD through work due to their pre-existing condition clause...so here I am at a high stress job with progression again. I would qualify now...so just trying to figure out if/when I should take leave again.
I've been reading on these boards pretty regularly--I agree that there is a wealth of knowledge here, and I've learned so much from everyone. Glad to have these pages to keep me sane. :-)
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KC I hope so too, a cure for all.
Question, how does one get a Guardant360 test? MO order? Pay on own?
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Hi, Bluebird - the Onc I went to for a 2nd opinion after I failed Ibrance/Femara suggested it. My Mo hadn’t used this test before. They drew some blood, and results came a couple weeks later. He was a little concerned it wouldn’t work because I had just started Gemzar. They recommend not being on chemo when the blood is drawn—they need circulating tumor/cancel cells to get data, and chemo could prevent this. I had only been on Gemzar a couple weeks at the time, so we chanced it, and were fortunate to get some qualitve data regarding which treatment ‘should’ work for me. It also provided info on what clinical trials could be a good match for me. I believe they had it approved thru insurance, and I was guaranteed to pay no more than $100 if insurance denied. I didn’t end up paying anything.
We’ll soon see if the data is accurate...Flasodex should work for me.
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wow Z you are so impressive I don't understand most of what you write but it sounds great😉. I do believe in my more simplified way that the immune system is key. Whatever drugs can get that engine going I'm all behind. I'm still plugging along on the Xeloda train and so far so good. I want to wish all you ladies a wonderful special Merry Christmas . You are all so amazing.
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rpoole - I am so happy that your TM's are down. FWIW I've seen you get down but never really discouraged in the sense that you stop fighting. If it's not this med, you'll figure it out.
That said it appears you will have a respite from all the figuring and I am glad. I am so interested in this trial … oliparib and wee1 sounds like a weird band name but in fact it is an effective cancer treatment. Please keep the posts coming.
Bluebird - As far as I can tell, your MO orders one of these genetic tests, the insurance refuses to pay and the company eats the cost. Interesting business model, but that is how it worked for me, twice. Shetland has had the same experience.
Wendy- You've been on the right track by instinct from the day I "met" you. I know that you are juicing up something or other that keeps your immune fired up and exercising … and also working with the standard of care when it seems it may help. We each have our own way of figuring this out and your thinking process has always impressed me. So glad Xeloda is effective, but not surprised. It works very well for a long time for many people.
I just finished a full week of ALA IV's … five in a row through my new port.I ran before and after or during every IV to improve delivery of the drug.If I can't get hyperthermia to improve circulation and deliver of drug to the target, running will have to do. I have a bit of rep at the local alternative doctors office which makes me proud because these people have seen everything. And now they have seen a lady jogging in place for 30 minutes next to her IV pole.
Really tiring treatment. I am completely spaced out. I can't recall how many things I lost or mis-placed this week. Three more IV's next week and I am done. Hopefully brain function will return, I will find most of my stuff and then off to Italy.
A radiation oncologist at Mayo Clinic who specializes in the immune effects of radiation has taken an interest in my case. My immunotherapy doc was initially reluctant at radiating any liver mets, but he signed off tonight after looking at this ROs publications."I think you have found the right person to radiate your liver mets, Katharine-san." His note left me feeing upbeat at the prospect of getting radiation to the liver. That is so odd, but here in this forum we get excited about things that others might find disconcerting.
Pretty also excited about my port, actually. That is also odd. I am glad this forum is only for people with Stage IV because our lives are just hard to explain.
>Z<
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KC1010, I am in the same boat, definitely think fertility treatments triggered something. I was fine for 8 years after early stage dx, then did IVF and started developing back pain within a month that turned out to be mets that came on very rapidly and with a vengeance in my bones, liver and lymph nodes.
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Thank you for the info on testing. I am glad it is a lab and not another biopsy. yeowsa, they will have to put me to sleep next time! Labs - yeah!
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Z. I forgot what ALA is, but if it causes more brain fog than I already have, I better not take it. Ha. Is the approved radiation to your liver external?
Yes, we stage lV ladies have a different wish list than most folks. I dont think Amazon has anything we want/need.
I'm having PET Jan 9. Yesterday the scheduler called. Is it too much to wish that schedulers in a cancer center have even basic medical knowledge? And has logic been thrown out as a necessary skill for employees? I am diabetic and not completely controlled right now. My doc just added another med but I am not on insulin. So, its a slow process to get my blood sugars down. After all the questions and prep info, bla bla bla, she had not said a word about different prep for diabetics. So, I asked. Oh yes, she says dont take your diabetes medicine the morning of test. So, i started trying to explain my situation. It was like talking to a wall. She was just reading her script and was not listening. She kept saying, we want your BS as low as possible so DON'T take your medicine. Where is the logic in that statement? I told her I run high, even on all my medicine, and I know you won't do the PET if it's over 200. Not getting to have the test would be very stressful to me. To which she replies, oh honey, dont feel like that (what?!?!) We'll take good care of you. I was about to come unglued. I tried again, I'm not stressed about how you do the PET, but all cancer patients have anxiety prior to getting results of scans. To which she repeated, don't take your diabetes medicine and hung up. Grrr
I've decided I will call my doc and ask her if she can write special instructions for me, she knows my BS history. Of course, I know about eating no carbs the day before, so i will do everything i can to keep it low. But, I also know that diabetics dont always respond to low carb=low BS. I also know that they inject glucose, this is not my first rodeo.
Okay, rant over. But, I'm still feeling frustrated. Another day in the life.😤
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Grannax - That lady was talking down to you because she doesn't understand why she is asking you not to take your diabetes meds. You were asking a good question and she did not know the answer. When people question or challenge me when I give them the third degree ( ... honey, why don't you just trust me?) I look them in the eye and tell them I have no confidence in the standard of care or our medical system... and proceed with my questioning. Works better in person because they can't hang up.
That said, she may be right. It is a good question that your doctor may or may not be able to answer. I take metformin not for diabetes but for its anti-cancer effects. Metformin draws the sugar out of the blood and into the muscles and lowers blood sugar in that way. You would think that would help get your blood sugar to the levels they want for a PET, but I can see problems. It increases uptake in muscles not the tumor and could draw the radioactive glucose away from the desired target. In any case, I follow the instructions and I don't take my metformin before a PET scan, but I don't actually have high glucose levels without metformin.
Alpha Lipoic Acid causes brain fog when you do an IV of a high dose for 5 days straight. I take it orally daily when I am not on IV's and I don't feel anything.
>Z<
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Z. I know you are completely correct. She didnt know the answer.
I've heard that metformin can interfere with PET, I dont plan to take it even though scheduler me it was fine to take it. The one I take in the morning is glimepuride, but I have sent an email to my internist who prescribes my diabetes meds. The other med I started recently is trulicity.
Thanks for your post. I always learn something new when i read your info.
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Grannex2 I am sorry you have to deal with such a confusing person. Deskilling the work force might save money but it sure doesn't provide good care. I understand the need to cut expenses. I am an expensive RN who is being replaced my unskilled individuals. The clinic I work in suggested that the person rooming the patient can provide a teaching sheet on say, 'breast biopsies" and if the patient has questions they can call the “nurse"which is me. This is so short sighted...
Don't you wish they would just say, “I have no idea" and not pretend they know the answer.
Z you are amazing! Thank you for your dedication and time. You lift us up! I am sending you all the healing intentions I can muster
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Back at ya bstein.
>Z<
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Coming down with the stomach flu my daughter just got over. She's been vomiting for days . Any ideas?
>Z<
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Z, do you have activated charcoal capsules on hand? Always helpful with stomach viruses.
I always take apple cider vinegar (a tablespoon in a few ounces of water, once or twice a day) when someone in my house has a virus, and I usually dodge the bullets. If you take it while coming down with a stomach virus it may hasten the vomiting, but I think sometimes that is a good thing as it is helpful to get the purging over with.
I'm so sorry. Stomach flu is the worst.
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Z - I noticed in a post you wrote a couple weeks back that you no longer have the ESR1 mutation? What are they attributing that to? I just found out I have this mutation, and have been reading that prognosis is poor for those of us with this mutation. If this mutation could change, it definitely changes treatment options. I’m curious about your thoughts on this. Thanks
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