How are people with liver mets doing?
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Shetland so happy for you, that you are holding in this exciting place. Good for you.
Artist can't wait to see what new Onco will want you to work with.
Lita you encourage so many here.
Lalady you are still having the jaw pain? Why is that?
Liwi what a shock. It's always the same, something hurts, and bam then you get the dx. But there is much that you can do, your Onco seems to be on top of things, so that's a plus.Z thanks for the quick info on the trial. Much much to understand.
My car was stolen from right in front of my house, it's not so unthinkable in NYC, but a true pain. We are thankful no one is hurt, it was in the middle of the night, and they just took it for the parts. Let's just say the police said - Lady you don't want us to find your car, trust me. It won't be in a condition that you would want to get into it. And so, much much distraction, not welcome, but so is life.
Dani had her PET/CT done, BUT there are no results, the one i did get was comparing to 2 yr ago, so I called up the radiologist and I said I know there is a lot of mets, but there was treatment in between and we need to know from a scan from 8 weeks ago IF it's working, not comparison to 2014! and they say oh mistake, but now there is a delay. And our nerves are really shot. Let's just say what I did see, DID NOT look good. I just cannot believe it. We probably won't hear anything till Monday for sure. Really really anxious, it's like till today we were going with the wind, but now the wait is cruel. I cannot imagine what Dani is feeling. Now we wait again.
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Momall. That bites!!!! The scaniety must be through the roof
I probably won't get my results until Tuesday night or sometime on Wednesday. Since I'm pretty sure there is progression I'm not that anxious.
Im so hoping I get into the study!
Babs
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Momall. It's a stage 1. That's the negative part. This study is world wide,has limited openings, and patients are picked by guardant. The nurse said that they do it randomly-almost like picking your name out if a fish bowl
Babs
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Hey Babs we are all in a fishbowl. Fingers and toes crossed!! Yeah, Phase I is hard. But from what you say about her, she must have thought long and hard about it. Dani is on Phase I stage 2 of the trial. Till we know about the scans there is not much I could say. Have a good night rest.
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Husband11, has your wife had Foundation One testing on a tumor yet? Insurance is starting to cover it almost fully and I met a great patient advocate in Philly back in April if anyone has it and insurance refuses to cover..
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((MomATT)). Praying for you and Dani.
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Has anyone heard about Foundation Medicine? According to their website, they are able to find gene mutations and match genes among patients to look for the precise treatments. I wonder if they are legit. Thanks!
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Welcome Liwi, We all know the shock of this diagnosis and you will find that it all get better as you decide on treatment. I ago with civ that you may want to wait to tell everyone. There is something to be said for having a certain degree of privacy.
Anita, I met my new Onc Friday. He is a very nice man from India and I have to say I liked him immediately. He was so thorough with my entire history, LISTENED so well to what I had to say, had many ideas up his sleeve for where to begin, what OUR goals are, and a very long list of where we go when progression happens. I am not in denial, I know there is only so much they can do. But he instilled in me a great sense of optimism and just made me feel like I ws in very good hands. I will start Abraxane Monday. He thinks that will make me feel better very quickly regarding the ascites. I hope he right.........
Mom, I cannot believe that about your car. And waiting for Dani's scan results on top of that. You two really need one huge break. Sending hugs and prayer your way.
babs, that does sound pretty exciting about the new trial. I hope too that they accept you and that the SE's are very tolerable. We are all rooting for you!
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Kidmanliang, Foundation Medicine is VERY legit and is front runner in genomic sequencing. See my above post..
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Welcome Liwi,
These forums are a good place to ask questions, share info, and occasionally vent when needed. My original dx's was 1993 with reoccuranes in 2002 ,2005, 2012 (mastectomy) and then stage 4 in 2015. I now have mets in lung (stable) and liver (approximately stable). Currently I am on faslodex , previously ibrance.
First let me say, you never get over the dx's, I was supposed cured, obviously though I wasn't free of cancer cells. However, you learn to live as well as you can, I am fully active and travel fairly often.
Last Thursday, I left my MO's office almost giddy with joy that I did not have to go to chemo and could continue on the hormonals. I know the day will come when I will have to go to chemo but " it's not today".
Your resources are critical for you to be well. If possible, choose a MO who specializes in BC, preferably he/she has participated in research trials. Also, think about consulting a MO from another top facility. in my case both institutions can read my test, procedures, etc online so coordination is easy. On family, only you can know when to tell them,
I do not broadcast to the world, but my family knows everything, it's a great comfort when I worried about a result, even with so long a history, you'd think it would be easy, it's really not, but I can keep my fear at bay with their help.
Sometimes when I feel low, I say to myself, hey I'm still here, it's a good day.
Peace,
Kathy
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Artist- so happy you switched MO's and that this one is optimistic and has many "tricks" up his sleeve. You must feel soooooo much better! That's how I felt when I switched right after my stage iv diagnosis. The attitude of your oncologist makes a hugh difference.
Hoping this weekend finds you more settled, calmer and more hopeful ,
Babs
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Badatusername,thank you!
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Kathy, it NEVER gets easier.
We go along for a year on a certain protocol, thinking we got it under control, and it then WHAM, something else shows up on the next scan or we develop some major pain or numbness and it's back to square one all over again.
Thank heavens we all have each other to lean on and find support.
Welcome to the new people, sorry you have to be here, but this is a fabulous group of women.
L
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Hi, Everyone. I'm back after a short break, just busy with life. It means so much to me to read all the good wishes and congratulations for my good news of the recent tumor marker drop on Xeloda. It made me happy reading each and every comment, knowing you all are happy for me! It is so good to be able to share with you all and know we are here for each other.
Z, I have indeed been doing what I can: enough sleep and in darkness; anti-cancer diet; support both here and in person; yoga/dance/walking which covers creative flow experience, exercise and de-stressing; aspirin; vitamin D3 and a little sunlight; healthy environment and products (e.g. avoid BPA, parabens etc.). I recently added the 13-hour overnight fast. Would still like to find more laughter and add regular meditation. Bstein, I do feel like I have a bit of a reprieve.
Iiwi, I'm so sorry for your recent news. What a shock. We are here for you. Your onc is doing all the right things. (Your lovely screen name is the Hawaiian bird 'I'iwi, starting with an I not an L, right?)
Babs, I see it has been a couple years since you had any anti-estrogen therapy, so combined with the trial drug, that sounds pretty good to me. And doxil and navelbine will still be there if you need them.
Momall, really? You guys need a break. Kidmanliang, yes, Foundation Medicine is good. My onc (at an NCCN cancer center) uses their genomic test. Artist, I'm breathing a sigh of relief reading your report of meeting your new onc. This is good. And I think Abraxane is likely to give you quick results to make you feel better.
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Artist, I'm so happy you had a good experience with your new MO. When my regular MO was out for 12 weeks having surgery I saw 3 different MOs. All from India. I have to say they were so smart, nice, took lots of time and extremely knowledgeable and well trained. I felt so confident with them. I think you will be in good hands now and get the treatment you need. Keep us posted. I go tomorrow for my MO appointment so I always feel nervous.
Have a good Sunday to all of you!!!
Hugs,
Anita
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Oh Artist so good to hear you found such a special doc. It makes a world of difference.
Liwi - I can't remember if I welcomed you or not. I can now blame it or chemo brain! Anyway, a warm welcome to you.
Babs - I suppose you don't have yesterday's results. Patiently waiting with you.
Mommall - Really? More hassle with paperwork and insurance.
I have been getting some sharp/acute pain in my right abdomen radiating to my back at the liver level this past week. I've had some pulling/twitching before but this is really painful. I will be finishing my 9th infusion of Taxol this Tuesday. Tests begin this week as in abdo ultrasound and CT scan. I know nobody has a crystal ball but this pain worries me. Wearing a bra is too painful and let me tell you gravity knocked on my door a few years ago lol! Does this sound like progression after 3 months of Taxol? Liver enzymes are back to normal, they were really high. TMs went up for the most part of the 3 months of Taxol (and since Dec 2016 in fact), stabilized about 3 weeks ago and went up by a few points 2 weeks ago. Any similar experiences? I've been so tired/weak lately and think this is the beginning of the decline for me.
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Shetlandpony, thanks for the information.
Artist, do you mind telling me how the Abraxane is prescribed? My cousin just had the 3rd weekly Abraxane (one bottle per week). It's like low dose higher frequency. I heard that Abraxane is usually given every 3 weeks with higher dose. As she has bone marrow involvement, the doctor tends to be more careful about dosage. I'm not sure if her treatment plan is strong enough as her CA153 (680) was very high the day before Abraxane. Trying to get the TM tested again Monday and hopefully it will tell us whether Abraxane is working! Finger crossed for your treatment and hope Abraxane will work like magic!!!
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LindaE, I have said a special prayer for you and will continue to keep you in my prayers. I hope what you are feeling is just a passing phase from treatment. You will be in my heart and thoughts as you have your ultrasound and CT scan this week. I have no experience yet with taxol, so I cannot comment on your recent developments.
Artist, I am glad that your new MO seems so helpful, caring, and is willing to work with you. I hope your new treatment knocks back those mets.
I pray for everyone here and for a cure for all of us.
Hugs from, Lynne
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Thank you ((Lynne)).
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Kidmanliang, I'll offer my thoughts while you're waiting for Artist to come along. I believe that weekly (3 on, 1 off) Abraxane has the advantage of being easier to tolerate. If your cousin is stage iv, they have to consider her long-term well-being, as this is a marathon rather than a sprint. And think of it this way: the cancer is getting hit every week rather than every three weeks. Wham! Wham! Wham! I had weekly Taxol -- same drug, different carrier -- and it worked extremely well. The patient's weight is factored into the dosage. See what your cousin's onc has to say about your question.
Linda, it is so hard to tell sometimes. Be extra-good to yourself during the scanxiety. IF it turns out not good, it is not the beginning of a decline, it is just time for a different treatment.
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Kidman, I echo Shetland's sentiments. When one is St1, 2 or 3, they tend to hit it hard right up front to blast away any hidden, latent cells. But when one is St 4, they use a different protocol for admininistering the chemo. Three weeks on, one week off delivers a steady, lower stream of chemo to blast established mets throughout the body and is usually better tolerated, especially if they slow the drip from 30 mins to 45 mins - you can ask them to do that and they usually will. The patient's overall health, co-morbidities and other variables are factored into the equation as well, and yes, body mass is considered, too.
I'm sure others will chime in, too.
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thanks Lita and ShetlandPony, that's very good information. Yes, she's stage IV with mets everywhere (proven to be in bones, brain and bone marrow, but there is suspicious spot in liver). I thought I updated the profile but it's not showing for some reason, I'll have to edit it again. She is doing TM test again today to see whether Abraxane kicks in!!! Fingers crossed!!!!.
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Shetland Pony You are correct on the name,I picked it for the Hawaiian bird.
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Linda I was on Taxol too. It really makes one tired so I spent most Saturdays in bed so I could live the rest of the week as normally as possible. I've been lucky no pain on any treatment thus far. Scans will tell what's going on and if need be you'll change treatments. That's what I keep doing!!! I should get my scan results Tomorrow or Wednesday.
Babs
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Babs - good to know I'm not the only one tired with Taxol and I suppose it has a cumulative effect. Keeping fingers and toes crossed for your scans!
ShetlandPony - I try to tell myself que sera, sera but scanxiety is getting my mind left, right and center but we all know that feeling.
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LindaE so sorry for what you are going through. Hope you get the results of your scans asap so you will know where you are at. Maybe ease up on anything you eat for the time being. Constipation? That doesn't help.
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Kidman, Shetland and Lita are spot on. My new Onc says the same thing. I am already compromised on energy and depleted of nutrients thanks to my recent ascites diagnosis. So I will start on every week for 3 weeks and 1 week off. My feeling is this med is stronger than anything I've been on and he says it should work well to "put out the fire." Then we reassess. Fingers crossed.
Thanks everyone for the well wishes on my new Onc. The biggest thing I noticed about him was his take the reins, no nonsense, decisive plan of action. I feel in good hands.
Linda, I'm so sorry you are experiencing the new pain and therefore stress right now. I know from experience that feeling drained, tired and weak can make your mind immediately go the the "declining" theory. Wish I could give you some sage advice about not stressing but know I got nothing. It's stressful. Thinking of you and hoping they get something going for you soon. All we ask is to feel decent.
babs, we are all anxious to see how it goes! Wishing you well!
Mom, Did you get the results yet after a stressful weekend?
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Hi all
I just heard that I got into the study. I'm thrilled. I only hope this works!!!! Waiting for my scan results. Hoping tomorrow.
Babs
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Bad at User: No testing on my wife yet. It doesn't appear to be available in Canada yet. The Foundation One is fairly pricey, at $5,800 usd. Didn't know insurance might cover it. We should look into that.
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Babs, I am SO happy and excited for you. I hope this study is just what you need to breakdown those nasty cancer cells. We are all there holding your hand. Once you have more information (and if you have time), let us know what is involved, how frequent treatments are, etc. Asyou can imagine, we are all eager to learn as much as possible. Sending you hugs and prayers.
Lynne
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