How are people with liver mets doing?
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Kaayborg. Sending you lots of hugs and hoping the new chemo changes things for you. Maybe this chemo will be your magicbullet! Fingers crossed!
Babs.
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Kaayborg, sending love and a virtual holding hand across an ocean. I hope you feelthe warmth of all our prayers for you. Xx
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Kaayborg 😢
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New here. PBS a few weeks ago showed this program called Into the Night. Maybe some of you have seen it. It really helped me a lot. Kaayborg, wishing you peace and comfort. Just go to PBS for video.
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Redgirl, I recorded that program, but haven’t watched it yet. Glad to hear it was good.
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Kaayborg - I’d been thinking of you and was glad to see your post though sad to read what you are going through. Sending love, hugs and hoping that the new chemo will be the one that works for you.0
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Kaayborg how are your kids doing? If you can let us know which treatment you will decide on? It's a tough road ahead. I'm still picturing you running up and down the steps to get the blood going. You are doing all you can. We are with you. Sending you
and 
Z it was real smart for you to be at such a grand place, and i might say the timing is just right, so that you could address the "things" in the brain area at Mayo. Some quiet s very welcoming, but i do hate that you are alone there. Watching any good reruns? Let's hope to hear that t's a menangioma and that's that.
Kaption wishing you a quick recovery from this nasty infection.
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I just read many pages to catch up on all of you here on the thread. My jaw dropped when I read of your NEAD scan, Zarovka. Wow. (My first scan after Taxol was 3 months, but the same result: scary liver full of mets to NEAD.) It sounds like your Mayo docs are being very smart about figuring out the brain spot; glad you are there.
My heart stopped when I read kaayborg's note. No, no, no. Kaayborg, sending wishes for amazing times with your family. Remember, where there is life there is hope.
Lalady, congratulations on your successful NYC interview and on having a good tailor!
I can't remember enough to respond to everyone, but I have read every post and am thinking of you all. I am probably still NEAD on Xeloda, which is great, but also getting very tired 10 months on this chemo. I think I am playing chicken with my onc. Who will suggest a dose reduction first? She knows I will want to “tough it out" and I know she is all about quality of life. Will DH betray me and tell her I need a reduction?
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Hey Shetland. So nice to hear you are doing well on Xeloda. Thank you for thinking of me. I am on the side of dose reduction. There is a balance between letting the drug do what it needs to do and letting your body do what it needs to do. Since you have been at this 10 months, you have a successful drug. Is it time to to give your body some reign to heal? It's not a QOL issue so much as an efficacy issue. The drugs have to work with your body to hold the cancer back. Just a perspective from my perch in Rochester.
I think the frickin Neulasta is finally out of my system. My resting heart rate, which rose to 80 beats/min after the Neulasta shot, has dropped below 70. Although normal for me is below 60, it's a big difference. Blood pressure dropping back to normal. I no longer feel like I have the flu. I was exhausted and hyper for a week, even after the extreme bone pain and flu symptoms subsided. Never again. That is neither QOL nor conducive to healing.
I did 3 hours of yoga yesterday after days of just trying (and barely failing) to make my step goal. I hope to get back to the gym every day I am here. Trying to take advantage of the peace and quiet and the ability to control my schedule. These are not a component of my Soccer Mom life back home.
>Z<
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Hi Lisa, I had a liver biopsy three weeks ago, and it was a piece of cake. They did give me twilight sleep (fentanyl & something else) to put me in lala land, and used a local, too. I was awake enough to see my liver and tumors on the ultrasound, then fell asleep as he inserted the needle. The only *hard* part was staying in recovery for three hours afterwards. I felt no discomfort during or after the procedure. Best of luck!
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Thank you Kathy. So if your liver is swollen does that mean it is going to stop working? And what does liver pain feel like. I keep pressing on my liver area but not sure what I am feeling. I have only had one treatment of doxil and am terrified it won't work.
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I want to jump in with a recent Science story, VEGF signaling and RAC expression is very important in breast cancer stem cells.
VEGF signaling in breast cancer stem cells: http://stke.sciencemag.org/content/11/528/eaao6897?utm_source=sciencemagazine&utm_medium=twitter&utm_campaign=6388issue-19232
VEGF is needed for a cell state transition called epithelial-mesenchymal transistion (EMT) to happen, EMT used to be thought to be necessary for metastasis to occur, but recently was shown not to be important for metastasis, but instead is very important for cancer cells to develop resistance to chemotherapy.
https://www.sciencedirect.com/science/article/pii/...
Therefore, inhibitors that inhibit VEGF or EMT might be most useful not so much in preventing cancer cells from forming or metastatizing, but rather in preventing cancer cells to develop resistance to chemotherapy.
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Thanks, Cure-ious.
Z, I have been thinking along those lines. How long can my body withstand this before it tips to more harmful than helpful? Depends on what the now sleeping cancer would do if I reduce the dose, and that is what nobody knows. But if I am exercising less and cooking vegetables less, because of tiredness, that is not good. The dark circles around the eyes, the annoying little infection, the second cold this season all tell me my body may be starting to struggle. But in the past my rise in TM coincided with reducing my Ibrance from 100 to 75, so that makes me cautious. Obviously, it could just be that Ibrance was going to start failing at that point even without a dose reduction. Looking forward to talking this over with my onc.
Solitude in Rochester has got to be a big change from soccer mom in NM. Have you been able to do any low-key sightseeing, nature walks, etc.? Or read books that have been waiting?
Lisajo, I know, it can be hard when you are waiting to see if a treatment is working and wondering what is going on in there. I can tell you that in my case my liver worked fine even while it was enlarged and tumorous. My interventional radiologist told me that the reason I could feel progression was the location of a tumor near the edge. For me liver pain from tumors is a sharp pain or ache, and hurts to press. Liver pain from tumors getting clobbered has felt like twinges or like a huge ache in the whole area. Bottom line, it's hard to judge what is going on by pain, but the liver can function even under bad conditions, and it has an amazing capacity to bounce back. Your onc needs to keep an eye on your liver enzymes, scans, TMs (if useful for you), and symptoms so you can be ready to make a change if necessary. I waited four months on Afinitor + Faslodex, and then we said, nope, time to switch to Xeloda, which has worked wonderfully. If doxil doesn't work there are other options. But wait and see...
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thank you Shetland. You just calmed me down. Thank you so muc
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You're welcome, lisajo. We're all in this together.
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Kaayborg, happy to see you posted. I just don't want to believe your news. No, no, no. Praying this chemo works a miracle.
Shetland, for what it is worth, I was on the fence about lowering my Xeloda dose around the 1 year mark. Neither I nor my MO felt strongly about it but we both had thought about it. I went from 3000mg 14 on/7 off to 3000mg 7 on/7 off. I showed progression at my next scan two months later after being NEAD for over a year on X. It may have been my time to progress regardless but I have always regretted going to 7 on/7 off. I think my cancer needs more time on the med and less time to recover. If I had to do it over again, I would have lowered the mg but stayed on 14 on/7 off (or stayed at full dose which was still tolerable just getting a bit tough). Everyone is different and everyone's cancer is different. Just wanted to share my story since you are at a decision point. Good luck deciding what is best for you.
Curious, thanks for posting the info about VEGF, EMT and stem cells. I will read it. If we can figure out to kill those damn stem cells, I think we would be in a case closed situation.
Thinking of everyone else posting here. It is so hard to keep up and respond to everyone but I, like others have noted, do read every post.
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lisa, its difficult waiting and worrying to see if a drug is working. Im in the same boat. Re: liver biopsy. Mine went very smoothly but i did need strong painkillers for a couple of days recovery. Many people didnt have any issue but have something on standby.
Z- amazing result on abraxane! Gives a lot of people hope after 60 per cent liver involvement. You are in good hands I'm sure in your clinic.
Lalady great news on job! Good that you will have excellent insurance too which is most important.
Shetland interested to hear about your chat with onc about possible dose reduction. Im on X 4300gsm daily. Completed my second cycle. Feet and hand have been severely effected after breezing through first cycle. Could hardly walk at one point. Easing up now on week off. Think i need a dose reduction for sure. Just afraid it will still affect hands and feet.
Thinking of everyone else and sending positive thoughts and prayers xx
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for those of you on Xeloda- I was on it fir 5 years and sm now back in it again after 6 months off.
Here is my advise to you- ask for the changes. Try them out. If it doesn’t work out, advocate to go back to what was working for you. Over the years I have lowered and increased my dose and even stayed on it after they said it wasn’t working anymore. I adjusted due to SE and how i was feeling.
Don’t be afraid to try something new. And don’t be afraid to readjust if need be.
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Leftfoot, thanks for the advice. Are you saying you have had luck re-increasing the dose of a drug and the drug working for you again after doctors said it no longer worked? When I was taken off Xeloda, I didn't want to go off it given how effective it had been at killing my mets and letting my liver regenerate itself. I asked if I could add something else and stay on it but MO said at that time, adding something would usually be done “farther down the road" than where I was at then. I will keep that thought in mind to try Xeloda again at some point, with or without another drug
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thanks for the afvice leftfoot. What a great run you are having on X!
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Hi All,
I'm back from a few blissful days in the country. Whaoo...It's amazing how beautiful it all was...rain and all. The clean air, the frogs singing at night, the little chipmunks and the wide open skies...we heard only two cars drive by throughout our three days there.
Kaayborg I'm so sorry you're feeling so worn out...I hope whatever TX you're undergoing right now, turns things around for you. It has happened before and it can happen again...I'm sending you hugs of centering and peaceful inner strength.
Here's the info regarding the clinical trial at MSKCC. I need everyone's help in figuring this out—if this is right for me...
My gut tells me, NO Fkng way!! With my cancer load and possible progression, my lack of energy as I recover from the devastating SE of the prior therapy, do I want to be on a trial that's testing how much medication would be sufficient? Wouldn't I likely be progressing while they are figuring all of that out? Do you think this could be the right therapy for anyone at Stage four? My gut tells me to stick to something proven to work. Another hormonal or Xeloda. I need something that allows me to function. My mind is being turned to mush. I can't concentrate and write anymore.
Are there positive aspects regarding this trial that I'm missing?
Thank you all for your help. Grateful Cat!
Official Study Title for Internet Search on http://www.ClinicalTrials.gov: A phase I/Ib, open-label study of LSZ102 single agent and LSZ102 in combination with either LEE011 (LSZ102 + LEE011) or BYL719 (LSZ102 + BYL719) in patients with advanced or metastatic ER+ breast cancer who have Progressed after endocrine therapy.
- Why is this study being done? This study is being done to see how safe an investigational drug, LSZ102 alone or in combination with ribociclib (LEE011, Kisqali®) or alpelisib (BYL719) is and how well it will work to help people with breast cancer (estrogen receptor positive [ER+]) that is progressing or spreading to other areas and after exposure to previous anticancer therapies considered by your study doctor as compatible with this study. Each of these medications will be provided to you in a pill (tablet) or capsule form.
- LSZ102 is a new study drug that blocks and destroys a protein called estrogen receptor, also known as ER, which is present in the cells of breasts and other tissues. Estrogen is a naturally occurring hormone in human and animals which when bound to estrogen receptors in the breast, promotes breast development. Increased levels of estrogen receptors occur in breast cancer and it is thought that LSZ102 may help in shrinking breast tumors by blocking or destroying the estrogen receptors. Animal studies have showed that LSZ102 blocked and reduced estrogen receptors in breast tissue and shrunk breast cancer tumors. It is hoped that LSZ102 will have a similar effect in human patients with these kinds of tumors. As of 28 Aug 2017, 67 patients have been received LSZ102. LSZ102 is being used for the first time in humans in this study. This will also be the first time that the combinations of LSZ102 + ribociclib and LSZ102 + alpelisib are used to treat patients.
- Ribociclib works by blocking the activity of two closely related enzymes, called CDK4/6 (enzymes are proteins that help chemical reactions in the body occur). Blocking the activity of CDK4/6 prevents some cancer cells from being able to make a new copy of their DNA, which they must do before they divide. It is this effect of ribociclib that is hoped will slow the growth of cancer in patients. The study will look at the growth of the breast cancer cells when treated with ribociclib in combination with LSZ102. As of 15 Jun 2015, approximately 1400 patients have been enrolled inribociclib trials.
- Alpelisib belongs to a group of medicines called phosphatidylinositol 3-kinase (PI3K) inhibitors. The PI3K pathway is involved in tumor cell multiplication and survival. Stopping (inhibiting) these cells from multiplying may reduce the growth of certain cancers, including breast cancer. The study will look at the growth of the breast cancer cells when treated with alpelisib in combination with LSZ102. As of 13 May 2017, a total of 2414 patients have been enrolled in alpelisib trials.There are two parts of this study, dose escalation and dose expansion. The dose escalation part will determine the dose of LSZ102 alone or in combination with ribociclib or alpelisib and about 132 patients will participate.In addition, the effect of food on LSZ102 will be studied in some patients. At first, LSZ102 will be given without food to patients. Once a safe dose of LSZ102 has been determined to be safe while fasting, up to 12 patients may be enrolled in food effect cohort(s) to examine the effects of food on single doses of LSZ102 in a run-in period (a period in between the screening period and the treatment period lasting approximately 10 days). Based on the information from the run-in period, if it is determined that LSZ102 can be given with food during treatment cycles then you may receive instructions on having LSZ102 with food. There may also be additional food effect studies to study the effects of food on LSZ102 for 1-2 treatment cycles.In the dose expansion, during which all patients will receive the determined dose, about 180 patients may participate.
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Miao- Well, that's the nature of phase 1: something to ask is which of these drugs is being titrated? Perhaps they already know how much of the ER-degrader to use, and are testing how much of each drug in the combo to give?
These combos, if they work, sound like they would be intended for secondline treatment, when you normally would move from Femara to Faslodex; and in this case they are testing if adding Kisquali would help (well duh, we already know that yes it would, but they need to check with the SERD to be sure) or this PI3K inhibitor, Apelisib. In both cases they ought to know how much of those drugs to test as well, so maybe the phase 1 part is just how much of each is optimal with fewest side effects.
Might as well just go straight onto Faslodex-Ibrance.
The question is how is Alpelisib looking in ongoing trials? First, you would want to know that you have a PI3K mutation, and could be so because these are common in MBC, Alpelisib is already in phase 3 with Faslodex (SOLAR-1 trial) and far enough along that they are not accepting new patients.
The stupid OncLive website won't recognize my email/password (arrgh!) but they have a report from Feb 2018 that at least looks good for efficacy: "Alpelisib (BYL719) induced a disease control rate of 58.2% and stable disease rate of 52.2% in patients with advanced solid tumors"...
So if anybody can get on there, I'd like to see the whole report and know the side effects....
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oh, nevermind about onclive- that was the report for single agent Alpelisib, they got avg 5.5 mos time to proression` you'd want to know if it synergizes with fulvestrant; plus SEs are high blood sugar plus others, does not sound too great so far
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MIao, my last comment to ask your onc, is given the toxicity of Alpelisib, maybe just go onto Faslodex-Ibrance-Everolimus (Affinitor) instead- we all hate Affinitor but it can work, at least in combination with Faslodex to combat hormone resistance. Here is a recent report.
http://www.targetedonc.com/news/everolimus-effecti...
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I need your opinion ladies,
I’m currently on Doxil but last week found out that there is progression and my MO is suggesting either Halaven, Verzenio/ Faslodex or Everolimus with Faslodex.
I'm seriously thinking about giving Doxil more time but I don't think my MO would be on board. There has been some progression in my latest scans after 3 cycles of Doxil - two new bone lesions and one more liver lesion.. the rest is mostly stable and some with even reduced SUV uptake. The tumor marker went up after the first cycle but went down by 10 points after the second though still higher than normal range... not sure what happened after the third since I get my TM check before treatment.
I know Doxil is a slow acting drug at least slower than some..I don't want to burn another bridge too soon.. what do you all think.. anyone had a similar experience?? All words of wisdom and advice are welcome .. I don’t think have many options left and don’t want to jump ship too early if there’s still a chance
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Cure-ious, thank you so much for your help with your generous response and knowledge.
I was already on Faslodex shots in combination with Ibrance before moving on to Afinitor and Tamox. So I don't think my MO is going to retry that combo and although the Afinitor has knocked one of my TM by 25% the SE are too many and I can't take it anymore.
Uncontrollable high blood sugar is what I'm currently experiencing while on 2000mg of Metformin. But A1c is normal, so MO doesn't take that into account, but the inflammation in my body is telling me it's a serious problem. I'm afraid to lose my eyesight and damage my heart, plus I'm gaining weight. I can't function like I used to...
In that report on Fas and Afinitor, they were giving people 10mg. I am on 7.5mg and I feel like dying...5mg doesn't do much...
All considering should I turn it down? Should I move on to Xeloda instead? What say yee....
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Miaomix, I would need a very good reason to do a phase one trial without having tried additional proven therapies first. Looking at your history, Xeloda comes to mind. You have done three anti-estrogen therapies along with two targeted therapies already, and now have side effects that are a deal-breaker for you. The trial is yet another anti-estrogen plus targeted therapy. Maybe it is time for a little chemo? If this trial is successful, the combo may become available as a standard option in the future, or in a phase three trial, in which case you could use it later with more confidence. Xeloda may indeed be easier on you than your current regimen, especially at a standard 2500. Personally, I like how I feel on X better than how I felt on the anti-estrogen combos, surprising as that may sound.
JFL, I appreciate your sharing your thoughts about your past Xeloda schedule change. Without having talked to my onc yet, I will say that I would be more interested in reducing my dose by one pill than going from 14/7 to 7/7. I remember my onc saying that one reason she liked Xeloda for me, as opposed to a chemo administered less often, was that the more days I was on chemo, the better chance we had of hitting a slowish cancer at the right phase of the cell cycle. Your words "still tolerable just getting a bit tough" describes my current situation pretty well. I think I should redouble my efforts to get good sleep and all the rest before I consider any change. But as Z says, I need to keep in mind how my body is handling it. I have been daring enough to skip day 14 a couple times without even asking permission (gasp!), and to once take a two-week break with onc's approval. Actually with onc's convincing as I was only asking for ten days. Fyi if anyone is wondering, I have been on 2500 for ten months.
Lillymillie, if you can hardly walk, talking to your onc about a dose reduction seems essential. I think your hands and feet will still be affected, but more usable on a lower dose. You are doing what you can to avoid heat, pressure, and friction on them, right?
Nouzay, I think I would ask the onc, "How fast is this cancer moving? Is it safe to try one more doxil cycle before deciding to switch? What was my last TM number?"
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hello ShetlandPony,
Thank you for confirming my gut feeling and worries about joining a phase one trial. I also like your reasoning about getting those drugs after they are approved.
Tomorrow I will ask to be switched to X. If I'm lucky I will stay on it for a while. The anti estrogenic TX are weakening me so much, I can no longer function.
Thank you so much, and congratulations on your long run on X, may it continue working well for you for years to come
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Miomix/JFL - my IR told me that X is a great complement to Y90–I guess X is a radiosensitizer. We were bummed that X already failed me...I would have taken that with the Y90 for sure.
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Kaayborg-i have been thinking of you so often since I read your recent post. Oh my sweet MBC sister, this is just such a hard journey. wishing for you courage, grace, and peace. Gentle hugs, MJH
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