How are people with liver mets doing?
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oh kaylynne I’m so sorry you are going through this. Sending love and support. Gentle hugs
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Kaylynne - I am feeling for you. I too had a fracture at the top of my femur a month ago - and its was so sore. Are you getting this fixed - I had a rod and pin put in my leg, then radiation. I was very surprised how quickly I recovered from the op. Difficult to say if I was in the middle of chemo how I would have managed that, as I had just failed Xeloda and was going on a newline imminently. But I did take the Xeloda right up to the night before the op.
After this my body decided to embrace a high level of bilirubin and I've been working to get this down so I can go on 'normal' chemo. I don't think it had anything to do with my leg or the op - as my scan had shown loads of spots and my poor liver had had enough!
Wishing you a swift recovery and an escape from the pain.
Sarah
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kaylyne so sorry for this extra bonus. it really stinks, at least they were decent enough at the ER and they took care of the emergency. a lot of times they just kick people out, like not on my watch.
Z wish you well
Bluebird-DE whats going on with you.
Lita?
There are so many ladies we haven't heard from in a while, how about a roll call. Miss you tons.
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Photogirl, I too had major issues with mouth sores, tried magic mouthwash etc, but recently my family doc prescribed an ointment called Oracort 0.1% which worked immediately. I only use a little at a time since and after about half an hour the grittiness is gone and you don't feel/taste it anymore.
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https://community.breastcancer.org/forum/8/topics/...
Hi All,
I've started the recipes thread and added very important information for those of you that need to gain weight and to recover your appetite. Enjoy!
Recipes to follow....had to get the science down first on how to disrupt the cycle of not wanting to eat. Which I know all too well myself.
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https://community.breastcancer.org/forum/8/topics/...
Hi All,
I've started the recipes thread and added very important information for those of you that need to gain weight and to recover your appetites.
Recipes to follow....had to get the science down first on how to disrupt the lactic acid cycle that builds up in our bodies and causes fatigue, muscle wasting, and lack of appetite.
Start by taking the supplements listed, they should start getting you off that negative loop cycle immediately.
I know the supplements work as I had to disrupt that negative cycle myself twice already.
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Gosh, I go one day without reading and all of THIS happened. Seems like there's a lot going on.
Kaylynne That must have been so frightening to not be able to walk. It sounds like you got good treatment from the hospital. 💞
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Anita - love the giraffe pics - sorry you have to leave x and move to Afinitor (aka Aphony-tor and Afakitor). What dosage are you on? Please read the Afinitor thread for more info, it majorly failed me after a couple of months as it has many others. Ask Miao too. What are they pairing it with - Femara or Arimidex? For the mouth sores; I used Nysantin and Magic Mouthwash and Biotin wash - nothing with alcohol. Crossing my fingers this med works for you. PM me if you want more details. My job interview was in NYC, the job is in west LA. I leave for London 5/29 for a week - glad to be seeing Stonehenge and Bath and the Cotswolds. I like cream tea too. Hoping x keeps mets at bay when I restart next week. Other than extra tired, I'm ok. Z - had to do a spine MRI prior to treating my dura met to eliminate any possible mets in my spine or it's fluid - otherwise I was getting WBR. It was cruel. Glad you yelped and got a wider ride. It takes hours for all 3 views. Mine was negative. sigh
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Kaylynne - What a series of awful things to deal with and process in a short period. I think you are on your way to recovery even though the road is tough ... thank you for letting us know what is going on. It can be hard when things are not going well but we want to know. Keep us updated on progress as well as setbacks. Hoping the setbacks are few and the scooter provides you with some amusement.
MRI was normal. Spinal tap was a spa treatment after the mild pinch of the local anesthesia needle. Lab results back tomorrow, hopefully. Due to the shape and location of the lesion, negative lab results and MRI do not guarantee that the lesion is benign. It's just less likely that it is a metastasis of the cancer. Benign or metastatic, I still have a lesion pressing into my brain that may need to be removed. Meeting with neurologist.
>Z<
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Z so much confusion. You did great. Spinal tap like a spa, someone there must have very light hands. Fantastic. Thx for the update. Emotionally are you holding up?
Anita one more thing, Diflucan. I know it helped Dani somewhat.
Miao the information that you worked so hard to put together is just wonderful. How thoughtful of you.
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Kaylynne-you are in my thoughts dear MBC sister. What a lot to cope with. I wish for you peace, grace and courage. Love and sincere wishes for everything to go smoothly and for you to feel better. MJH
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Z— thinking about you this morning as you prepare to see the neurologist. May you receive good results from the spinal tap. And get that lesion taken care of: pronto!!
Mom, thank you so much for your support!
Anita— Afinitor can work well for some people, unfortunately I was not one of the them. At 5mg it was practically useless, at 7.5 the SE quickly accumulated to make me very feel very sick. I developed a cough, major fatigue, aches and pains all over my body, and my mind turned into mush. I lost my short term memory drastically.... and I have the AKT1 mutation, which means I should have greatly benefited, but my quality of life was so compromised, I asked my MO to switch me to something else, and now I'm slowly repairing all the damage with various natural supplements. I hope you're can benefit without the SE
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kaylynn - You are in my prayers.. hope this too will pass and you are getting closer to recovery and making a breakthrough.. a lot of times things get so complicated before they resolve.. hang in there!!
I had mets to the bones and liver and still do but when I first got diagnosed it was all over the spine, shoulders, scapula, sternum, pelvis, hips and femurs and even toes!! I had a couple of compression fractures in my spine and a broken femur all from the mets and the weight of my baby as I was 32 weeks pregnant at diagnosis. I know how frustrating it is to be confined to a wheelchair but a scooter gives some autonomy.. I had a rod and screw to fix my femur and that helped a lot .. for me it was a long road to get back from all the inactivity with a ton of physical therapy but it got better.
You will get through this!! Love and gentle hugs for you
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Anita, then there are weirdos like me—I got almost 18 months out of Afinitor + Aromasin. It wasn’t a walk in the park, but I was willing to navigate the side effects as long as the main one was life. I hope it does you right and you need to believe it will.
I had to pause TX early on because my mouth was full of sores. The magic mouthwash with Dex helped some and so did Lysine (supplement recommended by my onc). I held cold plain yogurt in my mouth for several minutes at a time and that was comforting. Mushroom soup (fresh, not Campbell’s!) kept me alive. I coated the pills in butter for a while but sometimes that wasn’t convenient. I finally mastered the trick of getting water in my mouth, tilting my head back, dropping the pill in the pond, and swallowing pronto.
Hang in there!
Momatt, I love seeing you post. It can’t be easy to come here but golly, we love you and I am so grateful that you visit us still. Big hugs
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Kaylynne, Well dang, what a weekend you had! I am sorry for all that has been thrown at you. It sounds like the next two weeks will be hectic for you, but I do hope that you will begin to see daylight after that. Do you have any idea what trials your MO is considering next? He/she is probably still researching to find the best fit. In the meantime, try to find time to rest and recover from everything you are going through. You must feel exhausted. Apple red scooter, eh? That sounds pretty flashy to me. I can picture everyone jumping out of the way as you speed down the hallways of the hospital every day this week. My thoughts and prayers are with you. I hope you feel better soon and that you have a great response to the next trial.
Hugs and prayers from, Lynne
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Miaomix- I also have the AKT1 (L52) mutation. At some point in the future, I will participate in a clinical trial at Dana Farber in Boston with the drug AZD5363, an AKT inhibitor. Animal Crackers is currently in a trial with another AKT inhibitor, which is keeping her stable. You are probably already aware of all this. I am sure that MSK has this available also. Best, MJH
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Hi MJHJ ,
I was offered to participate in a similar trial at MSK, but it was only Phase one, and since I've been feeling really sick, I wanted to get on a proven TX, ASAP to stop progression. I'm getting a pet scan and waiting for my MO to decide on what to do next. I will post any updates.
I would likely participate if I didn't feel so sick and wiped out after Afinitor.
Good luck to you with that future trial.
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Miaomix. I appreciate you answering questions and explaining info to me. It makes sense to me, now. Now, if I can only explain what I'm thinking that well to my doctor. If I swear I feel like I might get up and walk out of the room if she is still insists on me taking AA. I know there are other treatments that are appropriate for second line TX that my Insurance will pay for and that appropriate for ESR1 mutation. I will be happy even if she says ok to Fas/Ibrance. If I refuse AA will she fire me? Can they do that?
My gut instincts are screaming at me not to take AA.💞
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Dear Grannax,
I got eight months out of Fas and ibrance...side effects very manageable.
I would ask your MO, since the two treatments are equally valid for your mutation, why not prescribe the FAS/ ibrance combo? It's a rational question and you should get a rational answer. If that fails, tell her that you know that inthe order of prescribing, Fas usually comes before Afinitor, anyway. Afinitor is usually the last hormonal, targeted therapthey call it, administered before moving on to chemotherapy. Follow your gut, but try to turn your MO into your friend and ally. They lose so many patients, is it surprising they are so sensitive to disagreements?
Okay...I have some good news and a weird one to share. By taking the phosphatidylserine twice I day, I have recovered my ability to think and remember, and I'm back to writing my book...my favorite activity....
Then here's the weird one...I was waking up with these weird headaches, and tension in my neck and shoulders, that were quite disquieting. I suspected it was high blood pressure. I measured, and sure enough, the numbers were so high, I'm surprised they didn't break the glass on the machine.
I started to immediately take potassium chloride in half the recommended FDA daily dose, and voila' in two days no more headaches when I wake up and BP is starting to come down considerably.
Then, today 48 hours later, after taking two doses, suddenly, my terrible lower back aches and pains where my two vertebra had collapsed and I had kaphoplasty miraculously disappeared.
I just returned from a long walk around Washington Square Park, and I'm no longer in constant pain. I won't have to wear the fentanyl patches when they arrive. Now I have to concentrate on recovering my strength, I'm still severely fatigued.
So alleluia for having enough potassium in our bodies. According to the FDA the minimum daily dose is 4700 milligrams, that means 12 bananas or 7 heads of lettuce...who can eat all of that?
No wonder heart disease is so prevalent, potassium counteracts the effect of salt, which we need anyway to keep all the engines on.
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Maoimix. I want my memory back too. I better start taking your supplement.Do you think the high BP is because of the supplement?
I have until May 29 to calm down and think of ways to ask my MO. But, I've already asked her two times and she was evasive and really didn't answer my question. For some odd reason she does not have a portal and does not respond to her email. I'm finding communication very frustrating and inadequate.
Also I have been on Ibrance and femara for 16months. My only TX since MBC dx except y90.. I really thought she might change me to fas when we got genomic testing results back but she did not mention it. All she said about report was there's nothing we can do with this. That was in January, so I've tried to ask her for four months to ask her about possible second line treatment in regard to report. All she's done is talk about AA. She considers my January scan stable, although it had a few that had more uptake. With all my info it's not a stretch wonder about progression and change of tx after May scan. So, the more I read here, the more I know I'm not ok with what she is saying. So, I wait.
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I would find lack of reliable and easy communication with my health care providers a real problem.
I would find her lack of response and explanation about the TX very upsetting. After all, it's your life and health at stake here. I would think she would be more humble and malleable.
If you're not heard, it's a real problem. You might have to switch to another MO, if all fails.
As far as TX, it would probably be FAS and something else, not ibrance again. I'm sure someone else can be of help here. I'm not sure what they can couple Fas with at this juncture. In clinical trial they are mixing it with verzanio.
My headaches preceeded my intake of supplements. Supplements are not known to have side effects, unless they are consumed inappropriately and in enormous quantities
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Grannax, your MO sounds like a short-timer. You are a far more patient patient than I would be with her! If I recall correctly, in the past you were disinclined to go to TX Oncology. I want to encourage you to reconsider that, if so. I’ve had excellent care and communications there (Presby campus)for eleven years, and everyone in the clinic and chemo lounge seem as satisfied as I am.
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My ALT and AST started elevating in the past month. First my PCPwas alerted then GI doc’s blood test confined the elevation. My monthly Ibrance blood test showing even higher number. Onc put me on CT/bone scan. She called saying my peritoneal mets are worsening and there is spot on liver. She suggest Ixempra Or Adriamycin/ Cytoxin as the next TX. Has anyone had experience on either of these? Any other suggestions
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lulubee will you PM her name to me please. Presbyterian would be a good place for me.. mine used to be at presby but has moved recently.I may have to change MO. 💞
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Kaylynne you have had quite a challenging week. I'm sorry about your broken femur. Years ago I had a multiple pelvic ring fractures and remember how frustrating it was to be non weight bearing with limited mobility. That on top of a compromised immune system and dealing with having to drop out of the trial seems like too much for anyone. I'm choosing to believe this trial didn't work because there is a better one out there for you.
NouzayO It sounds like you have quite a story from your experience, so mets, broken femur and pregnant. Thanks for sharing.
Grannax I'm glad to hear you are considering challenging/changing your onc if the current one isn’t listening to you. Her lack of responsiveness sounds very frustrating, really unacceptable. When I first got my Foundation One results and asked about my ESR1 and other mutations she didn’t have much to say. A few months later she told me she had attended a recent conference and that the ESR 1mutation meant my cancer had developed a resistance to AI’s, which is why it progressed, however it was not resistant to an estrogen down regulator like Faslodex. Fortunately I was already on it, but if I hadn’t been we would’ve changed to it.
Cling I did Adriamycin/Cytoxan in my initial treatment. For me the side effects were mostly fatigue and some stomach upset in particular week one, then I’d feel better the second week. Treatment was every other week for 8 weeks, 4 total.0 -
Finished up all the brain lesion diagnostic tests and met with the doctor on Thursday. Spinal tap and MRI diagnostics all negative for brain metastasis. No visible mets in spinal fluid in MRI, no cancer cells or other evidence of cancer in fluid. BUT, because of the location and shape of lesion, they cannot completely rule out the possibility the brain lesion is cancer. Some lesions are obviously meningioma (benign), some are not. This one is too deep to biopsy. The indirect measurements (spinal fluid/MRI) are not conclusive in this situation.
My options are to go ahead and cyber-knife the lesion or monitor. I am a fried from medical procedures and being away from home. I can't see myself flying back to Mayo for cyberknife next week. I want the lesion gone, but I need a bit of home/family time before I head back. There is some risk in waiting even a few weeks because if it is cancer it could move quickly. It seems like an unnecessary risk to take if I am going to get it out anyway, but need a bit of time to think and regroup. I am just glad it is not obviously cancer or I would not get this time to process the situation
Heading over to the brain mets thread to learn more about cyberknife ...
Pensive,
>Z<
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wow Z so much to ponder. After all the diagnostics you still have nothing conclusive. How frustrating. I don’t know anything about cyber knife but I’m going to go research it. I hope you get good information from the brain mets thread to help in making a decision on your next step. What a ride we are on. The road is far from smooth. ((((Hugs))))
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YES Z to the go home and get re charged. 💞
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Z so much to think about. I’m sure knowing you you’ll make the right decision for you!!!!!!
Bab
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I may have asked this already, but I am getting a liver biopsy Monday at the Cleveland Clinic. Are they dangerous?
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