How are people with liver mets doing?
Comments
-
I have never heard of the epigenetic immune mutation. I am interested in learning more.
PR's mechanism of action in breast cancer has never been fully understood. There are no currently approved treatments to specifically target progesterone receptors or cells. Progesterone is important in the cell cycle as it aids programmed cell death. This is part of the reason scientists believe it is a favorable prognostic indicator for breast cancer.
Although I am PR-, Aromasin/Faslodex worked very well for me for 15 months. It completely shored up my extensive bone mets - I was literally dying of hypercalcemia when diagnosed and could barely walk. And it also rapidly shrunk my huge liver tumor load and rendered both bones and liver metabolically inactive. After 15 months, though, my liver tumors re-exploded. There may be some PR-who do not respond to AIs but it is not all with PR-.
0 -
Letmywifeli is that something what they give for prostate cancer? LIke Zytiga...they seem to be ahead in PC for hormone resistant therapy from what I understand. I wish for BC the same. Onco told us that DD does not respond to any Hormonal tx anymore so...
0 -
Is anyone here on Ixempra
0 -
blondie1
I too am very scared especially since I read my onc last notes. About as neg as can get. And he's a pretty neg person already. Want to get an opinion from another hospital. Need to start something soon. It's been over 3 wks since I've had a treatment. Simply don't know what to think. Sounds like I should just go & drive off a mountain.
0 -
Mom, you are not boring ME with these lab values! I worked for 30 years as a laboratory technologist. The blood tests you listed are all studies performed to evaluate anemia. Your daughter may have a low red blood cell count, low hemoglobin and hematocrit. Quite commonly, anemias are caused by either Vitamin B12 or Iron deficiency. By measuring the levels of these in the serum, it can be determined which may be the culprit. Ferritin is an iron storing protein, and levels are lowered in iron deficiency anemia. TIBC stands for "total iron binding capacity" which helps look at iron stores in the blood, and will be elevated in iron deficiency. Same goes for %SAT, or percent saturation(of iron, Fe is chemical symbol for iron) UIBC determines availability of sites on Transferrin, a protein that carries iron throughout the body. Cancer treatments also are infamous for causing anemias because of suppression of blood cell synthesis. Hope this is helpful! love and hugs, MJH
0 -
share the hope- please hang in there. We are here for you. It's always the hardest before you have a plan. Get that second opinion. Lots of hug
0 -
share the hope...I ditto what Leftfoot said.....and you should definitely find a doc with whom you are comfortable. Don't let HiS negativity bring you down
0 -
MJHJAN14
thanks so much for helping out. It's just they throw these things in and don't even say anything about it. She is going in on Tuesday so if we could be prepared would be great.
Hemoglobinis 8
should be above 11.7 it has not been close to that in mos. but now it really came low, Sharethehope i think they would do transfusion if it hit 7.Hematocrit is 25 so it has been getting lower.
Her RBC is 2.49 also much below the norm for them which is 3.8 and up. But again it has not been there for the last few mos. It's just now it's kind bottoming out. The ANC is 1.6 also kinda low. Let's hope she could get her infusions this week.So she is anemic? I also thought so by asking dr Google. but the office didn't call to advice she should do something about it.
Dayzeroze finally someone that is taking Ixempra. Yes my DD was put on it already a few mos. She goes in 3 wks one week off. She is also Triple Positive. She was on almost e/t already. She is on Herceptin also and Xeloda. Her tumors were just progressing so she added on the Xeloda. And she takes Xgeva every 4 wks. Being triple+ maybe you could ask for Herceptin added, they have studies that Herceptin with Ixempra (chemo) is very beneficial. Just saying k. I'd love to be in touch with you if we could help ea other, I tried a thread but I could not find people that are on it.
Sharethehope I could understand your despair. And I know i am not the person with the Monster but it's like i am. I share every anguish with my DD and I am the one always looking into stuff and trying to get to the right treatments. Sharethehope, in the middle of last year my DD was still constantly progressing, her MO was dragging his feet, and I could not find a place to go with her, bcs believe it or not all Centers were telling me oh, why don't you stay with Onco blah blah, until I finally got an appointment to see someone new. Desperation at that time was at all high level. That's where you are at now. Do you have other options? Then do it.
Instead of driving off the mountain, sit by it, look out at the beauty. Please don't drive off yet k. We are all in the same boat, you are not alone. Let us be there for you. Please look at where your options are, if you want I could help you look into it. Take good care of you! That person really doesn't matter, trust me!!!
0 -
Mom, those numbers would indicate anemia. Her iron level (Fe) is low, which is the most likely cause. She can be treated with iron supplements. Iron deficiency anemia can be slow to respond to treatment, but you do get there. Many patients' bodies seem to adjust to anemia in the short term, but fatigue, shortness of breath, looking pale are all symptoms. (Yeah, great-just what your sweet daughter needs on top of everything else.)
Was the Sodium level high or low? Sodium is one of those minerals that has a very narrow range in the blood(approx. 135-145 MEQ/L). It helps with nerve and muscle function. when it gets too high or low, it is a semi-acute situation which should be treated right away, and will generally resolve quickly. Hydration status can affect sodium levels. If your daughters' level is within your clinics' normal range, should be OK, but check with MO. Best of luck. Hugs MJH
Sharehope, So far, I'm sure I've only felt a fraction of what you are feeling. It must feel really icky, and I know my turn will come. Thanks to the powers that be for this amazing group. I would feel defenseless without it. I am thinking of you and holding you in the light. May the new MO, second opinion happen with lightening speed. Love, MJH
0 -
MJH after we called to ask about the MRI bellow, and asked about the BT, yes they say btw it's good for you to take Iron Supplement, and also I checked her Sodium is 136 the bottom of their chart 136/146, what do you think I could tell her to do in the morning to fix this? Could it be from Xeloda? Again they did not mention a/t, i am not sure they look at the BT the way the should, kind if you are dying, we will know!! What should i ask of them on her visit tomorrow? I wonder if they will give her chemo infusion altogether.
This came up meanwhile, DD had numbness in the left arm, really bothersome, MRI of the cervical showed all the usual suspects, hyperintense enhancing lesions, from C through the whole thoracic. But the main issue is the "large paracentral/foraminal disc protrusion severely narrowing the neural foramen. with rightward cord displacement. etc... So now doc recommends Neurosurgeon, maybe he will advise on Kyphoplasty. We have to set up appointment, of course we only found out AFTER we called to check what's up.
Anyone had experience with this? THX
0 -
Hi momallthetime. I had a very large lesion at T1 that caused a pathological fracture and an eventual collapse of the vertebra that caused a narrowing of the neural foramen placing pressure on the spinal cord. Lesions were also found at T3 and T4. This caused numbness and tingling of both arms and hands with eventual loss of hand function. I had spinal surgery in July that consisted of a fusion from C5-T4 with instrumentation and laminectomy at T1. This was followed up by a C-collar 24/7 and then Physical Therapy which started 4 months after the surgery. Some question that are specific to a cancer patient that you may want to ask if and when surgery is recommended:
- How will previous cancer treatments affect the surgical outcome?
- How long after surgery before she can resume her cancer treatment?
- Are or is there anything she can do before the surgery such as a visit with a Physical Therapist that may help with positioning, getting up and down from a lying to a sitting position, and any possible isometric techniques that could be done several weeks after the surgery before starting post surgical PT?
Hugs and positive thoughts are on the way from my house to yours.
0 -
No1 thank you soo much for the tips, hers also is at T1/T2, her whole thoracic is full of lesions, they don't let up. But at least it did not progress this time around. Onco thinks doc will do kyphoplasty, it was not an option for you? How was your recovery? Tomorrow we have an appointment. I sure hope he won't say she needs surgery. This doc is a Neurosurgeon, Interventional Radiologist.
0 -
Ladies
Thanks for the nice comments. Still in a funk - don't know whether to scream or cry. This onc just is so depressing. I had my visit w/him the day he wrote the notes & he didn't say these things face to face, in fact he hadn't even met w/the committee yet. He just says the most distressing things. He believes that even if cancer doesn't show up on a scan you still have it. So there are no NED patients because even if it cant be seen its there. Well, it could be but maybe not. Yet he also says newly diagnosed breast cancer is curable. I could go on but won't. He is just such a downer.
About the mountain. Mom, the mts are ugly this time of yr so won't sit & look down. Besides, I really don't like heights. Actually the mt thing is from an old cartoon. The words are: "I'd like to die in my sleep like my grandpa ...................... not screaming & yelling like the passengers in his car." Has a picture of old timey car going over a mt. Its funny unless some jackass is telling you to get measured for a coffin. Besides I have a houseful of delightful legal drugs available. Wish cannabis were legal here but not medical for adults.
Plan to get a 3rd opinion - don't think a second from one of my onc compadres will be of much help. We were suppose to be considering Zoleda or a trial. Thought there might be something positive there. Apparently he doesn't. You all know we go through so much. They cut off parts of our bodies, we lose our hair, were sick, were exhausted, our emotions are all over the place, we live with death by our side even if we try not to, then we have to deal with medical personnel that should be working with cars instead of people. Where's karma when you need it.
0 -
Anyone here tried radioembolization therapy? My once suggested it to me today. I'll have my scans before my next treatment cycle, beginning in 4 weeks. If all looks stable and it should, I'm a good candidate. Here's a link which helped me understand it a bit better: http://www.interventionaloncology360.com/content/y...
I'm pretty excited having this new opportunity to shrink those tumors. Actually, I just read above and saw some discussion about Y90, which before today I had not idea what it mean so skimmed on. My onc did not mention anything to me about it not being approved yet but did say it is newer for use on breast cancer vs. primary liver cancer. I wonder if it is in a trial at my hospital. She said that they had someone on staff now who is doing it. My center only treats breast cancer patients.
I wish well to everyone. A lot have been going on around here, non-cancer related so I haven't been following posts that carefully but still always thinking of you.
0 -
Kaayborg - I am so excited that you are being offered this option. We want to hear all about it. I would ask your onc to explain why radioembolization vs the other options. SIRT may be the best thing, I certainly like the stats. However, this question will get your onc to explain his/her thinking a bit more. Here is a list from Best Bird's guide.
Ablative TherapiesCryotherapy
HAI Chemotherapy NKTR-102 (Etirinotecan Pegol) – Not Yet FDA-Approved Radioembolization or SIRT/Yttrium 90 Microspheres (Theraspheres) Transarterial Chemoembolization (TACE)
NanoKnife
RadioFrequency Ablation (RFA)You should read her guide so you have some basic background in all the procedures, but here is what BestBird has to say about SIRT/Y90/radioembolization.
Radioembolization, SIRT/Yttrium 90 Microspheres (Theraspheres): This is a relatively new treatment suitable for use even in patients with extensive liver involvement. Radioactive spheres (very tiny radioactive "seeds") are injected into an artery in the liver. After they are injected through the liver artery, the seeds travel into smaller arteries that feed the tumor. Once they reach the tumor, they give off radiation for about three days. The radioactivity causes damage to cancer cells with little damage to the healthy liver tissue. Radioembolization was safe and provided disease stabilization in 98.5% of the patients' treated liver tumors in a recent study. From: http://www.sciencedaily.com/releases/2014/03/140324133234.htm
One person whose liver mets were allegedly too large for the procedure wrote this valuable tip: "I had trouble finding a doctor who would do it given the size of my tumors as well as some insurance coverage issues - and I got 3 "no's" from different doctors until I contacted the company who makes the radioactive beads, SIRTEX. Their sales representative hooked me up with a highly skilled interventional radiologist named Ryan Majoria who eventually accepted me. SIRTEX has great customer service and can also provide the name of one of their representatives in the patient's geographic area who will call and talk to the patient personally about their product and whether or not the patient might be a good candidate (of course they are not doctors, but these reps know EVERYTHING from my experience including who the most experienced doctors are who perform the procedure.) SIRTEX's telephone number is: 1-888-474-7839. Patients should ask for the representative in their area to call them. My Y90 procedure went well, and my main side effect is fatigue."
For those who may be interested, an excellent video about Radioembolization is located at:
https://www.youtube.com/watch?v=3WwSfGPQq9g0 -
Sharethehope - NED stands for No Evidence of Disease, it doesn't mean no cancer. It just mean you can't see it in scans (that's the evidence). Being NED is mentally a very good thing, but for late stage patients being NED and being stable will not have different survival outcomes. Either way, the cancer is probably still there and needs to be treated and controlled.
I am glad you are getting additional opinions and finding another doctor. It is clear the vibe is bad. But there may also be a mis-understanding about terminology. I have a positive outlook. I expect us all to do well and die of something other than cancer, but we'll probably have cancer for the rest of our lives, whether we see it in scans or not.
>Z<
0 -
Thanks Z, as always you are a wealth of wonderful information. I just recently got the guide from BestBird and will definitely check it out, the video too!
0 -
Zarovka, Thanks for trying to clarifying. I do know what NED means. This onc doesn't believe there is such a thing. Since I was there to hear these things I'm not even going to try to explain it again. I worked for over 30 yr for a pharmaceutical Co & am grateful for the new drugs available. Many of the drugs I hear you ladies taking now are from the co. I was associated with & gratefully they do send us info on them. And there is always so much more to learn. I am also not saying that cancer medicine wouldn't always be needed even if you are said to be NED. I have had cancer since 1995 & in that time have had 8 different onc. Some because I move & some because they moved. I've had a sister die of cancer, a brother, a grandfather had cancer my mom had cancer, my grandmother had cancer, an aunt died of bc & several friends have died. Talked to a lot of onc thought the years. I do realize I'm old but have yet to be declared senile so I think I have the terminology correct. Besides its in writing. This onc is negative & I am tired of it. I guess his being neg is my call to make. I had a pos attitude after all its been over 20 yrs. This guy is wearing me down & I think I have a right to my feelings. After Jan 29 post I felt I needed a break from site. Guess it wasn't long enough. I need to get away from site. The best to you ladies, may all your treatments work & you have peace. April
0 -
Best wishes sharethehope
0 -
Mom- I am not an MD, but if my Sodium were 136, I would not be concerned. I hope all goes well for you two today. Love, MJH
0 -
I just wanted to check in with everyone. I go in today to sign all the paperwork for the TRINITI-1 trial. They are basically testing the possibility of ribocib working after failed treatment on Ibrance. I had 15 months on Ibrance before progression. I got all of my pre-trial testing back last week and was pleased to find that even though my last cycle of Ibrance was the week of thanksgiving, I am still holding steady. I found out about my progression on my 12/01/16 PET scan, still confined to liver, but progression. I stayed off all treatment besides Femara to have a lumptectomy 12/13/16 and a re-biopsy of liver mets the next day. It seems like it as take forever to get going on my next treatment option!! I was offered Xeloda, and SOLAR-1 or TRINITI-1. We went with TRINITI because the arm of the study done at our center, everyone gets the drug, Affinitor, Aromasin and Ribocib. I am reading all of the info everyone has posted the last few days, its great to have it as a resource. I hope everyone is doing well.
Alissa
0 -
After having an US, CT and MRI my liver has a web like growth all through it. I am now booked in for a biopsy next week. I have been warned that it is still going to be a bit of a blind biopsy as it is not a mass and they cannot guarantee getting a good sample. My MO and radiologist are both leaning towards a mets dx, just need to prove it.
I was just wondering if anyone else has had a similar growth pattern. Thanks
0 -
Freya that does sound a bit exotic. At least they are following through.
mama2twin thanks for updating us. That should be really interesting. Hope it works for you.
I just read on the Xeloda thread that it could be the Xeloda makes the sodium low, let's see the BT this week. Thanks for all your help.
0 -
Alissa - keep us posted on that trial. Very interesting.
>Z<
0 -
Hello. It has been a while since I posted here on the liver mets thread. I watched the number of unread posts growing longer and longer, so I had to work up the courage to jump back in. Those of you who read the Ibrance thread will know I have my first progression. The PET/CT showed an increase in uptake and size of lesions in the liver, that definitely means it is time for a change. My sense is that this has come on slowly but steadily for the past year. I am likely going to Faslodex and Afinitor, or a trial with Faslodex and a similar drug.
My liver has been whispering to me. Little transient aches that say all is not well. I'm off drugs because the trial has a two-week washout. And you know, I think a little break for my body to recover before starting the new stuff is a good idea. I'll be meeting with an interventional radiologist to see if a biopsy is possible and advisable. My onc thinks local treatment is not appropriate because of the multi-focal nature of the mets. Darn lobular, right Freya?
Alissa, TRINITI-1 seems like a good trial. How long has it taken so far to get through the process of getting on the trial? Kaayborg, I'm happy to hear you have the radioembolization therapy open to you. You deserve a new and promising treatment.
0 -
Shetland, it is so great to hear from you. I noticed your absence on this thread and looked you up a few times to make sure you were well. So sorry about the progression. Many prayers for long success with your next treatment.
0 -
Kaayborg, how kind of you to look me up! I am very glad to be back in touch with you!
0 -
Hi everyone! I have rarely posted because I had really believed I didn't fit this group, I thought I would be a super responder to HER2 therapy. I thought my first line treatment for stage IV to liver only would get me NED for many years. Just had me CT scan which shows no new lesions but subtle progression in three of the largest, 3mm and now 6mm. I will meet with my MO on Monday. Not sure what she will suggest. Can't tell my 5 children yet as they will be worried. My oldest is expecting a baby girl the end of this month and I just can't worry her either. I'm thinking RFA as they were going to do that last year at this time but couldn't find the area on ultrasound so they didn't. I was discharged from the liver radiologist but I suspect to see him again. I'm on Herceptin and Perjeta only and would be having treatment 28 next week. I suspect my MO might change this. I just stopped wearing my wig to work two weeks ago. Super sad and shocked as I feel so good!
Hugs to everyone
0 -
stein- I've been of targeted therapy since march of 2016. I'm on xeloda and last scans were NED so hoping for more of the same on next weeks CT scan.
So don't lose hope. I have Been off her2 targeted therapy since march 2016 and have remained stable.
Hugs to yo
0 -
Bstein - I am sorry to hear that you have progression. We have identical diagnoses, and I am sitting here at my cancer center getting my 28th round of H&P. You might ask your onc about either doing a liver biopsy to see if the tumors there are still just HER2+, or you might seek out a liquid biopsy that may show which mutations are present in your cancer overall. Either way, keep us informed and best of luck with treatment.
0
