How are people with liver mets doing?
Comments
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Miao- With that history, I'd be interested to hear why your MO thinks that trial would work for you. Perhaps he/she is just trying to keep you on anti-estrogen therapy a bit longer? There are many here who have had good luck on Xeloda.
Regarding your A1C levels, if you like to experiment around, there are unpublished results that nighttime fasting is good for about a 1.5 drop in A1C, as good or better than you can get from drugs. You would need to eat nothing but water from about 6:30 at night until 8am. No juice, fruit, nothing but water. Hot, iced, fizzy, whatever. You can eat what you like in the day and fill up at 6:30, but the fast has to be real. Supposedly getting amazing results in diabetic patients, and depending on your situation it might be worth giving it a trial.
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KC, interesting about X being a radio sensitizer. I wasn't aware of that.
Miao, add me to the list of people who preferred Xeloda to anti-estrogen therapies. I suspect you will do very well on it and feel much better than you feel on (as LA would say) Aphonytor.
Nouzay, I totally understand your hesitation to drop a drug too quickly. Could you request to be monitored more closely and get a scan sooner than your typical cycle? Shetland raises a good point about asking how fast the cancer is moving. When it comes to chemos, my progression seems to come on more slowly (on hormone therapy it came on like an exploding volcano). It sounds like you have mixed results and very minor progression. If your gut tells you to try a little longer, that might be the best course for you. I have taken the wait and monitor approach with mixed results as have many others.
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Cure-ious, it all started when I asked my MO to get me off the afinitor and tamox because of SE. I told him how easy Faslodex was for me and if I could take the pill format instead. He said that he would look for a clinical trial and he did, because I have the ESR1 mutation. I wanted to stay on the hormonal longer, but I didn't know at the time that they were still in phase one. But now I'm scared...
Now I feel that I would be better off getting a TX that's proven, although as we all know, we do react differently to the same tx. I feel I'm progressing. I have constant pain in the irradiated area in my spine, and overall aches and pains. Problems remembering, extreme fatigue and high blood sugar levels. An overall sense of malaise that's no doubt caused mainly by the currentTX.
I will definitely try lowering my A1c with the type of fast you're suggesting. I shouldn't be hard because I normally have an early dinner anyway and go to bed early.
JFL— thank you for your input. I look forward to gaining some strength by switching out of the hormonals.
LALady...congratulations on getting that great job you wanted. I will soon be joining you on the X train.
Thank you all for your support...sharing this weird journey we find ourselves on...our wisdom, trials and tribulations, keeps me from losing my mind.
May God help all of us!!
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Hi all,
We all need something to pick us up, from time to time. I love baking. Here's another favorite of mine: Low-Carb Scones with currants.
Enjoy in good health!
Ingredients
1 3/4 cups almond flour
2 1/2 teaspoons baking powder
1 teaspoon pure stevia
1/4 teaspoon sea salt
6 refrigerated tablespoons unsalted butter, cut into 1/2-inch cubes
2 teaspoons finely grated orange zest
1/4 cup dried currants
1 large egg
4 to 5 tablespoons heavy cream or half-and-half
Directions
Preheat the oven to 425 degrees F.
Line a baking sheet with parchment paper.
In a medium bowl, whisk together the flour, baking powder, stevia, and salt.
Add the butter and work it into the flour mixture with your fingers or a pastry blender, until it resembles a coarse meal. Stir in zest and currants. Mix.
In a small bowl, beat the egg and 4 tablespoons of cream.
Add to the flour mixture and mix with your hands until the dough just comes together. (If the dough seems dry add the extra tablespoon of cream.)
Turn the dough out onto a lightly floured work surface.
Pat the dough into a 6-inch round about 1-inch thick.
Cut into 8 equal sized wedges.
Space the scones evenly on the prepared baking sheet.
Bake until golden brown, about 12 to 15 minutes. Serve warm.
Note: For a richer, darker crust, brush the tops of the scones with heavy cream and sprinkle with sugar before baking.
Nutritional Info:
• Servings size: 8
• Calories: 255.9
• Total Fat: 21.6 g
• Cholesterol: 48.9 mg
• Sodium: 19.2 mg
• Total Carbs: 13.6 g
• Dietary Fiber: 5.0 g
• Protein: 7.0 g
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Hi All
First sending massive hugs to you Kaayborg. I am willing a successful treatment for you so you can get through this very tough time.
Thank you for those who posted recipes and nutrition advice. I've gone from someone who had a boundless appetite to someone who can't finish a normal sized dinner. Trying hard not to loose weight.
A quick update on my progress. I had my first dose last Thursday of Cisplatin and am due a second dose three week after that. My MO says this is the only one ok with high bilirubin levels. It is hard on the kidneys - luckily my kidneys are (and hopefully still are) in good shape. So had normal nausea controlled about 80% with steroids and two other drugs (Zofran and OLanzapine) It took 6 hours for the chemo as I has two hours of hydration before and after. I haven't yet had my blood checked for my bilirubin levels, but I feel I may be better - certainly am less yellow. It feels too early for the chemo to take effect, maybe the stent is working better. I've had real appetite issues and have lost 20+ lbs (which my size can take) I would be ordinarily delighted - but need the nutrition so hope I can keep at this weight and not loose more. I'm going to loose my hair which was something I hated last time - feel a little scared I will never get my hair back! But as I was probably going on Taxol I would have lost it anyway.
So I'm feeling more hopeful, though still have in the back of my mind this is a last chance to get back onto other treatments. It is so scary, but it's got my DH and I a bit more focused on getting our wills/power of attorney uptodate and I am really thinking what I want to do should I get more time (and feel a little better) We have life assurance that will pay out early if my MO says I have less than 1 year. But when faced with ill health where just the ride into LA for radiation was all I could do in a day it's hard to think what I want - trying to plan a few treats. My younger son is just back from his freshman year in Boston, and my older son is back in a few weeks from his junior year in UW in Seattle. Happy for me both boys are staying home n California for the summer.
Best wishes and healing hugs to all.
Sarah
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miaomix why does it all have to be so confusing and scary?
We've talked before about both of us having the ESR1 mutation. So our tumors are resistant to AI, but receptive to other hormone therapy like faslodax ? And I I think the trial is using another estrogen blocker? Also, I thought you wanted to get off afinator because of SE.
Then there's my MO who has indicated she would use AA for my second line TX. When I asked about faslodex she said they're all the same. I thought she meant they are all estrogen blockers.
Maybe my old, foggy brain is too slow to get all this sorted out but it seems to me that some of it does not make sense. Yes, I think the trial sounds scary.
I hope you get some answers and then explain it to me, please. Ha💞
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miaomix-normal A1C would indicate that your sugars are in control for the majority of the time. perhaps you are experiencing random spikes? A1C gives an indication of blood sugars over a three month period. Are you taking any insulin?
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Miao what a wonderful recipe. Im not into cooking or baking, but you gonna make me do it. From my point of view, all i could say is that i d obelieve Dani got screwed up once she started going on trials. She had 2 trials in 2017, with big promises from Onco, but she kept deteriorating and they were just concerned in exactly what they were aiming for. Not a big fan. IMHO i think your gut is right, chemo is more true and tried, and to give it a big punch i think you make sense that it would be a better option than a phase I trial. Just saying. Cheering for you.
Scwilly first of all fantastic that the boys will be home. Those are gr8 moments. Enjoy.
Kaayborg have you decided on a treatment?
Z getting the MRI? How is the alone time coming together?
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Miao - like Shetland Pony, I like xeloda for you too. It's tolerable and you may get a good run.
Plus we need more of those yummy recipes. SP you are a trouper to be dancing so well, sorry those dance bullies overlooked your talent. NouzayO- I had a good run with fas+ ibrance , so maybe opt for fas + Verzenio (abemaciclib). Diarrhea seems to be the baddie SE, but it's not an IV med like Havalan. Cure-ious may have some thoughts too. I would save big guns for later. 0 -
Grannax2--AA and Faslodex in my experience are not interchangeable. Faslodex was the easiest treatment for me, while Afinitor the worst. MO wants me to do an early Pet before he prescribes X, but he graciously told me to stop taking Afinitor. I explained that I wouldn't go back on it even if the PET shows no progression. Afinitor was turning me into a zombie....For ESR1 people such as ourselves, Faslodex is the key...but I was on the syringe format already.
Mom, thank you! That was quite a compliment if I inspired you to bake!! And thank you for the warning and for sharing Dani's experience with her clinical trials. I would undergo one if the payoff was big, but testing another medication that postpones the inevitable by a few months while I'm progressing wouldn't be wise.
MJH--the A1c was normal the last time it was tested, but my meter and symptoms point to a different reality. I have more appetite than usual so I'm gaining weight especially in the belly, all sign of insulin resistance. I'm also constantly fatigued, with aches and pains, inflammation in my feet, and these of course, could also be SE from my TX. I don't take insulin, only 1000mg of Metformin twice @day with meals.
Sarah--happy to read your feeling more hopeful and will be enjoying the company of your sons throughout the summer
LALady...you keep on cracking me up! Thanks!
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I do believe doctors get points socially and professionally when work with trial coordinators they put their patients into trials being held at their OWN institution. The obvious problem is that they may not be looking out for the patient. Listening to people tell their stories, it often looks to me like the onc did not try to understand the trial and consider whether the patient and trial are a good match. Certainly this happened to me early on.
The other issue is that the good trials for a specific patient may be at a different institution. This is particularly true for those of us who are not being seen at the most major of major research institutions like MSKCC. I definitely see myself considering trials, but I will be looking nationally. I came to Mayo in part to have access to their trials, but even so, not all the trials on my hot list are at Mayo.
Cancer Commons and Emerging Medicine are services that will match you with trials nationally and may be a way to go for some people.
I think there are good trials that are worth doing for all of us; however, I am not sure we're consistently matched with the best trial for us.
>Z<
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miaomix. I'm praying my doc will reconsider faslodex. I can see how it could help me.
I know aromotace inhibitors have a different mechanism of how it works, but is faslodex still considered a hormonal TX? So, just because it's hormonal type therapy does not mean it won't work on those of us with ESR1? So, there could be other hormonal, estrogen blockers that might work for us after it goes through trial?
I've heard that Afinitor can have some lung issues as SE. Did you have that? Glad you get to go off of it. Wish my doc had never mentioned it!💞
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Grannax—Faslodex is specifically indicated for the ESR1 mutation. And it's considered a hormonal. Taken with ibrance can extend the TX effectiveness from months to a year. I never felt any pain from the administration of the medication in my upper buttock and MSK did not warm up the med, although it's recommended they do that by the manufacturer. I had Michelle, always the same excellent nurse administer it.
Afinitor caused a constant and annoying dry cough. I also got winded easily and sometimes there was a rasp in my breathing. Some patients have permanently lost the use of 50% of their lung capacity. It's a well-known problem.
Glad it's over...and you want to know something really weird: in clinical trials, Afinitor was unable to extend what they call survival time. Hospitals must benefit greatly from prescribing it. It's a medication originally created for people undergoing organ transplants, to block organ rejection. NO, I'm not kidding...can't make this stuff up!!
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Z---your take is right on...researchers will always work to prove the TX works regardless the of the cost in human suffering. It's up to us to ensure we are on the right trial for our needs.
The suffering is inevitable since some of these medications are totally useless to some of us.
Let's hope they soon figure out why MBC doesn't respond to Immunotherapy....and why stem cells get out of control in the first place.
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Hello Ladies,
Been busy and not feeling the best lately. I got back from Africa and found out that Xeloda has now failed me. Had an MRI of the liver and CT scan. Liver mets are in both lobes and bone mets are progressing. I guess I feel the same way everyone else does, blood work is always scary since all my enzymes went up and tumor markers were up too. I went immediately to my MO at Dana Farber and he felt that I need liver biopsies to figure out how to treat this beast. He had my original slides from my Onco DX and along with the liver biopsy results there was no mutation. I'm still highly Estrogen positive and Her2 -. He said that I have an unusual protein in my blood that has caused the cancer to grow, but he also found a medication that is supposed to kill the cells. Has anyone been on Afinitor? I take it every day. He said this was tried on my lab testing and it was working. So now that I have failed Ibrance, Xeloda, I'm on a new drug but the sores in the mouth are coming. If anyone is suffering from the foot and hand from Xeloda, I found that Vicks Vapor Rub took the deep cracks in my feet away in 3 days. I sleep with it on and put socks over it. Today, my blood work is still on the rise. Red count low, liver enzymes high and tumor markers high but they look like they are not jumping as fast. I'll keep you posted on this drug, it has to be taken with Letrozol or Arimadex, Faslodex is not compatible with the drug.
Z, you are just a warrior. I think of you every day and appreciate all of the knowledge you give us. You are a blessing.
LAlady, I made it to the Serengeti as you said I would. I'm so proud of you going to NY with all of get up. I don't know if I could do it. I hope that you move to NYC. I will come down and have lunch. Only 3 hours from the City.
Wendy, I'm worried about your bloating. I hope you find out soon. I have been worried about you and think of you!!!
Mom, I'm so sorry about your daughter Dani. I missed all the threads and had no idea. My prayers and thoughts are with you and her girls. Thank goodness they have you. You are a strong lady. My mom cries a lot and can't deal with my disease. Sometimes I just don't know what to say. You are a hero!
Animal Crackers, keep on going!!! Good results are great. Glad to hear you are doing good.
Kaayborg, I am so sorry about your progression. I saw a pic of you and you look so beautiful. Keep us posted. I will pray that this get zapped and it is gone.
I don't know who is missing as I read the thread but I never know when one of our sisters pass. I'm sending my love to everyone fighting the beast. Ups and downs are the normal for all of us. Thank goodness we have each other.
Love to all and big hugs to everyone.
Anita (Photogirl)
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Grannax- Just to reinforce what Miaomix said, I recently had Foundation One testing, and it came back with the ESRI mutation and the information that Faslodex, as well as the Abemaciclib, Ibrance ad Ribociclib drugs are all appropriate to target that mutation. The AIs are not. That explains why my early experience with AIs when my cancer was diagnosed had no effect, and I progressed. It also explains why I had 3 1/2 effective years on Faslodex.
I did try Ibrance, but it was paired with Letrozole. Since Letrozole is not something that works for me( as an AI,) the combo failed me. I thought the Ibrance failed me but that was before I had the Foundation One and realized it was no doubt the Letrozole that was the failure. I plan to try Fsslodex again with Abemaciclib, hoping that after 3 years of chemos, Faslodex might work again with the addiditon of the Abemaciclib.
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Anita, what a beautiful and touching photo of the giraffes. Did you have to wait a long time to get it? I like the real African (not zoo) trees around them, and the look on the baby's face. The composition, the focus. The lines — how the branches mimic the curves of the animals! Thanks for sharing.
Regarding your treatment. I hope you have been prescribed dexamethasone mouth rinse to ward of mouth sores. It should be standard of care by now. It worked really well for my mouth on afinitor. I think it's great that they tested the drug on your tumor sample. If you don't mind, can you elaborate on the protein in your blood? Actually, faslodex can be combined with afinitor (new but I'm seeing it more), but since you were on Fas with Ibrance a switch to letrozole or Arimidex seems appropriate.
Miaomix, have you considered creating a thread for Miaomix’s Healthy Treat Recipes? That way we could find them all easily, browse, and decide which to make. How about a cookbook?
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Sandilee, your plan makes good sense to me.
Sarah, sending good wishes that carbo will be a game-changer for you. Have a blast with your sons. Beach time?
Z, I think having an impartial person looking at trials is a good idea, but I'm not sure how to choose a service. I guess I should start by looking up the two you mention. Somebody told me I should “sign up" with the NIH for trials, to have that in place when needed.
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Whaoo Sandilee, that's quite an amazing run you had on Faslodex!!! It's good to know the AIs are useless for us. I hope you get another home run if you get on it again...currently, there are clinical trials that are testing a pill version of it. I hope it's approved ASAP.
Before I forget....I wanted to share something with those of us that are losing our minds on cancer TXs and keep on forgetting things...Today, while talking to my sister on the phone and complaining about my poor memory, I happen to remember a supplement I had used successfully in the past, whenever I felt my lucidity and memory capacity declining. As we spoke, I popped one of the pills and voila' the effect was immediate. Like a strong wind clearing the cobwebs that were entangled in my brain and memory bank.
The supplement is basically brain food and is called Phosphatidylserine (PS) Is a phospholipid that contains both amino acids and fatty acids. The omega-3 fatty acids EPA and DHA work synergistically with PS to provide the building blocks for healthy cell membranes. The human body can make phosphatidylserine, and it obtains most of what it requires from foods.
In my case, however, it wasn't obtaining what I needed from food, so I took a 100mg pill and now I'm good to go! Yeahhh....Now I feel as if I'm strong enough to tackle any problems...
https://draxe.com/phosphatidylserine/
ShetlandPony--that's a great idea...I will start that thread. All the recipes are already part of a cookbook I will be publishing after I finish writing something else I've been working on. But considering the needs of our community, I will have to create an additional paradigm. Recipes for our sisters that are losing weight and don't feel like eating. Get them out of the cycle and recycle of lactic acid in the blood that induces cachexia....I've done it for myself in the past, but now it's going to be quite a challenge because I won't be able to test how well the recipes work. I'm going to need volunteers....
Anita, that’s a beautiful photo...you’re so lucky to be able to travel that far. I’m very happy for you....
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Hi Anita,
I just started on Aromasin and Afinitor after Xeloda failed. I'm in my second week and doing ok.
I use the Dexamethasone mouthwash which is helpful. The oncology nurse told me to buy some empty gelcaps at the health food store and put the Afinitor in the gelcap which helps keep exposure to the med away from mouth and throat tissue. I've only had one tiny sore which went right away.
I've raced through Letrozole, Ibrance/Faslodex, and Xeloda this year. Praying Afinitor works.
All the best and hope this treatment lasts a long long time.
Mary
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Miaomix - Yes. Afinitor did not extend overall survival in trials. There are women on this board that it clearly helped, we're not statistics, good or bad. That's where the gut comes in. But those trial results give anyone with doubts a very strong argument to decline it.
Hey Photogirl. Thanks for the pics.
Okay. So. I had my spine MRI this morning. I walk in and find that it is really 3 MRIs in sequence and takes 1.5 hours in the machine because the spine is so long. You can't take a break because they are trying to get a single picture of the entire spine with and without contrast.
They assign me to one of their old MRIs. Experience is like being shoved into a narrow sewer. Tube is maybe 2 feet, maybe 2.5 feet in diameter.
I also have post nasal drip from allergies that makes me gag when I lie down. Not a big deal, just need to be able clear my throat and cough, but if my head is jammed to the table even swallowing becomes an issue. I've been in denial about the procedure, did not get details, just trying to forget about it, so I did not take decongestants. Post nasal drip in full swing.
They pack my head around my ears with sponges to a bowl in the table, head completely immobile and shove me in the narrow tube, I start gagging, my head can't move AT ALL … panic attack.
I squeeze panic button, they pull me out of sewer pipe, drama ensues. I do not want to lose this appointment (3 MRI slots in a row are HARD to get and I need to get HOME). I begging for Ativan (chill pill) and/or time to run to the pharmacy for nasal decongestant spray.
In the end they moved me to a new machine that is quite a bit shorter with a tube that almost twice as wide. (Ladies, ask for a WIDE BORE MRI).
With new machine, new technician. The procedure was explained to me better. No I don't have to have my head jammed tight between sponges for for 1.5 hours. Jamming my head to table is for "my comfort"... hearing protection?!?! We ditch the sponges.
There are really just 6x3 minute periods and won 5 minute period and one 7 minute period where they are scanning the neck spine and neck has to be still. I can hold my head still without sponges! Tech gave me me breaks in between pictures to swallow and even cough. Got it all figured out. MRI done. Pics are awesome.
Upshot... spine MRI unremarkable except for possible lesion at L3, which I knew about and which is not active. I've been told it is cancer. Neurologist not even sure it is cancer. Looks like old age to him.
Spinal tap tomorrow... more stories of the gift that keeps giving to come.
>Z<
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Miaomix - I was on the trial you are contemplating with oral SERD (LSZ102) and ribociclib (Kisqali). I only got about 4 or 5 months before progression.
Check out the topic I opened with the details.
I can't figure out how to insert the link from my iPhone. I'll try tomorrow when I have a laptop. You could search for my username and clinical trial lsz102 but you'll have to scroll through about 5 pages before you find it.
Z was able to insert the link in her post. Please see her post with the link,
Thank you Z!!
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Z - you continue to amaze me with all of your research, knowledge, and bravery to put yourself through so much. You rock!!
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Animal Crackers - Here is the link to your thread on LSZ102. It's in my favorites!
https://community.breastcancer.org/forum/8/topics/...
>Z<
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Thank you all for the support and happy dances for my stable results. I work full time, albeit from home, take care of two sets of elderly parents, manage my cancer treatments in a clinical trial scenario and just spent the last 7 to 10 days packing and moving from a condo we’ve lived in for the past 14 years to a temporary residence and 2 different storage facilities. We may not be hoarders but we are most definitely pack rats. I can’t believe how normal I felt through this move. I hope this clinical trial keeps me stable for a very long time
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Hello AnimalCrackers,
Thank you for bringing my attention to your experience and thank you for your accurate logging of the procedures while undergoing the LSZ102 trial, and thank you Z for providing the link. I read the the whole thread last night and learned much about it. Glad you had a good run, except for the heavy SE at the end. I too find the SE to be accumulative on all the drugs I've been on. Thank you for allowing us to learn and prepare.
I wish you great luck with your current trial treatment and yes I am currently undergoing a downsizing myself, it feels good to let go of things i held so dear. Been shredding old corporate and personal income tax returns for the past twenty years. I'm starting by giving away my whole library including my fine arts and architecture book collection. I'm dreaming of moving from a 3 bedroom apartment downtown into a studio facing Central Park. Who knows...a cat can stilldream can't she?
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Z—thinking about you this morning and sending you waves of inner peace and centered strength as you undergo the spinal top. Everything is going to be all right! Just like the MRI yesterday that showed nothing new.
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Marylark, Thank you for that information. My Chemo nurse told me to swish with baking soda. It doesn’t work. I was planning on calling my nurse at Dana Farber but my husband can write a prescription for this. My chemo nurse is in my opinion not too sharp. The whole sides of inside my mouth have sores. I too blew through all the drugs so I hope this works. Thank you so much and I’ll check out gel caps.
Shetland, my Doctor at Dana Farber didn’t elaborate on the protein but when I see him I’ll ask him and let you know. I go to Boston about every 4 months since it’s 31/2 hours away. He rules. He watches over my local MO. It’s so interesting how they find these things out. I’ll keep you posted.
As far as my pic, I have to shoot fast never to miss a special moment. I’ll post a few more photos of the Serengeti. It is a really special place.
Thank you all. Hugs and keep going girls. We need to keep fighting this beast.
Anita
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"CROSS POSTED"
Here's the latest on this stinking disease that has decided to hangout in my body. The cancer has metastasized to my bones. So now it's in my breast, liver and bones. Apparently I have a fracture in my right hip's ball and socket. To top it off, I have a tooth infection. This all happened this past weekend. I woke up Sunday and couldn't walk. I went to the ER and because my immune system was zero, I received 2bags of platelets and a bag of potassium. I dropped the trial because this happened after one infusion. So now I go to the hospital every afternoon this week to get a shot that will boost my white blood cells. I will also receive radiation on my hip daily for 2 weeks so I can walk. In the meantime watch out for the candy apple scooter. Once my blood work is normal I will start another trial but that won't happen for a month to 6 weeks.
I would appreciate your love, prayers, and light. You all lift me up every day.
💕
✨
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dear Kaylynne,
What shocking news...im so sorry for this setback.
Glad to read you are getting the care that you need to reinforce your immune system.
The radiations on your hip and ball socket will greatly help resolve what right must feel like a nightmare. I received great relief from radiation when two of my vertebras collapsed and I was in a lot pain.
You are in my thoughts and prayers. May you continue to experience great health care and relief from your pain
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