How are people with liver mets doing?
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Thank you for that Lynne and you are absolutely right. I keep that hope burning too and try and look at the people still here and living every day. I have to say I also took a lot for granted before this whole shit show presented itself..... I look at the world now and have this constant anxiety about wanting to see EVERYTHING and EVERYONE, make tons of memorable art, writing letters, reading books. Like you kaayborg I feel angst over doing anything that wastes my time. I.e. WORK!!!! LOL! I just can't shake the ticking in my head. Although I do feel luckier than many, I also feel bitter about how my life has just now culminated into this wonderful place and Wham! Anyway, the lack of control is the biggest hurdle we will never conquer, I guess might as well try and enjoy the ride. Thanks, you girls mean the world to me.
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it's late at night, I am just trying to catch up. Bang, D just called, she sees blood in the bowl. Horror. She had that once while on Xeloda, her HGB was very low, and all the numbers were wacked up. Now what??? She is so upset, she has so many plans to do so much this week. We left it that we will email the Onco and the one running the trial in the AM, are they just gonna tell her to get blood work nearby stat? Well that got messed up the last time, but maybe this time they will do it right. Will they tell her to come to the office, she will loose a whole day of doing something! how scary? Could it be the liver really messed up? Should I take the whole bottle of Ambien? Hmm, just thinking....NOOO but. She's crying, she tries so much not to show me that she is upset only when she gets her outbursts they come and go as fast as they come. But this, and it's always at n
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mom - really sorry to hear about this new issue that Dani is going through. Since this is a trial, they should be monitoring her very very closely (like a hawk). Isn't there any emergency number you can call ?
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Lots of love to you and Daniel mom. Wish there was more I could do.
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Mom, I too am very sorry to hear this. I hope you and Dani find answers fast. Prayers to you.
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Hugs to you mom. I am also on a trial and they gave me a few numbers including an emergency one. I have 4 young children, so I totally understand the frustration of having to go in and loosing a whole day that could have been spent with them. My first few trial appointments for 7+ hours long. Praying for peace for both of you!!
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Momall, I am holding you and Dani up in prayer. I hope you find answers quickly and can move ahead with treatment. Sending you a big (((hug))). We are here for you, my friend.
Lynne
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Mom - Looking for an update. It is a trial, I hope the trial nurses you get are as good as they usually are.
>Z<
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They don't really have an emergency #, I can't even have a direct # to doc or PA, we email. What can you do? So we emailed this morning, she said D could do the BT locally, and I told her no, she shud go in even if it's a trip, first they could see right away and 2nd if it's an issue she is there, in their hands. SO, BT is fine! A little low but not enough for this. Blood did settle, nothing going on now. They are doing a urine analysis that will take a while. And they sent her for a Sono, I'd prefer a CT but that's what it is. She is feeling fine. Sorry about last night, but it's just insane.
Thanks to all of you that checked in, letmywifelive, leftfootforw, Kaayborg, Mama (my heart is with you, I know with the little ones it's beyond), Lynne and I know all care so much. I'll post when I know something.
Gonna go over to be with the kids. Take good care all.
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Hi,
Momallthetime I am so sorry to hear this, D and we all need a break from this monster.
Is anyone loosing weight? My weight has been going down for months now. At the beginning I thought it was due to the progression in my lungs and liver. I've been on navelbine for a month now and I think that I'm still loosing weight. Does it mean that I am not responding to the treatment. My MO does say anything about my weight.
Ziz
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I doubt if you will see just wait loss due to progression without any other visible symptom. Maybe a different health problem that your primary care can check ?
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Ziz. agree with LMWL. Weight loss reduces hormone production which can't hurt with ERPR+ cancer. I'd call that a win unless you get too thin. Your doctor will say something, just looking at you, if that is the case. Many otherwise healthy people start losing weight for no "reason". A lot of changes going on in our bodies, independent of the cancer.
>Z<
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Ziz,
I was on Navelbine for 8 months and felt the same way about weight. Every time I brought it up to my Dr she wasn't concerned and said she thought it was due to stress.
Now that I've been on a different treatment for about 4 months, I've gained about 5 pounds even though my diet and exercise still the same, :-(
Sending good thoughts your way! Navelbine can work really good, hopefully you have little side effects
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Thanks ladies and gentleman,
I just don't know what to do, think or say.
My primary MO is from Florida and I have one here in CR who sees me more often and yesterday I stop by his office to get some prescription and he said that I looked good but I don't believe him nor anyone else that says that because I don't feel that way. I can't exercise due to the fluid in my lungs. I can breathe better now but I still can't run.
Zi
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Ziz - So its not just weight loss ... if you just feel like crap that is a big concern. Micmel had a great experience working with a palliative care doctor. I work with complementary oncologists with the same goal. These doctors have a different focus - your overall wellbeing on these treatments. They look at things differently than your MO who is focused on killing cancer. However, your overall wellbeing is equally (or more?) important to the outcome.
As a fellow runner, I feel the need to point out that walking is exercise. Cardio is not required, nor are long sessions. A 20 minute walk? Broken up into two 10 minute sessions? Feels weird if you are used to running miles, but extremely beneficial.
Hang in there. I see you want to feel healthy. Pull that string ...
>Z<
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This is somewhat out of left field, but has anyone experimented with fasting or researched it? I have been reading articles about the benefits of fasting for a few days before/after chemo (for those doing IV chemo) and the benefits of fasting nightly (e.g., not eating after dinner and putting at least 13 hours before your last meal of the day and breakfast). In overly simplistic terms, it purportedly shuts down the cancer growth cycle when one fasts. Also, it is supposed to prevent chemo side effects and collateral damage to healthy tissues if one fasts before/after chemo. Sounds counterintuitive, but it has something to do with your healthy cells temporarily slowing down their growth mode so that they are no longer targets of chemo, which typically kills fast growing cells. Since reading about the nightly fasting a month or so ago, I have been practicing that. I would have a harder if not impossible time fasting for a whole day or more but trying to eat dinner a bit earlier and cutting off all eating after dinner has been pretty effortless.
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Momall. This is the first chance I've had to read this thread. So sorry Dani had that scare. How is she now. I can only imagine what her phone call did to you! As parents we'd do anything for our children
Please take care of you too
Babs
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JFL,
I've been reading about fasting and the positive role it plays with chemo patients. It all makes perfect sense. I'm currently on a daily oral chemo, Xeloda, so fasting isn't feasible but I can see how it would apply to IV chemo.
I hope it's being studied and we hear positive results in the future.
Amy
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JFL - Like you I have read the very compelling argument for the 13 hour fast and I try to practice that. Basically don't eat from 7pm to 8am. Creates an environment cancer does not like.
Many people do fast around there chemo IV's. Here is an article you have probably read. I'd have a hard time, personally. My blood sugar is low to begin with. It may not be necessary for me. I would watch my supplements with the fast. I'd certainly stop the metformin that I take. With all these things it is better to do it under the supervision of a complementary oncologist who has experience with other patients who have done it. But even if that is not available, fasting around chemo has been well tested, IMO.
The key thing is how you feel. If it comes with stress, it is not the right thing. But if it feels good and you want to do it ... I say go for it.
>Z<
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Hi, Everyone. So, here I am, two months on Faslodex & Afinitor. Feeling good, better stamina than before. But I still have these transient mild liver aches, and my TMs since starting F&A are still going up, not down. They went down immediately and sharply on Taxol in the past. PET/CT will be in a couple weeks, and my onc says we will wait and see what that shows. Breathing. Telling myself to wait and see. Telling myself I am calm.
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Shetland - Yikes. I've learned to believe in your tumor markers, the cancer may have become resistant to hormonal therapies. If so, all that means is you need a different, non-hormonal treatment, at least for a while. Get your scans, see what is going on, do what you got to do. Lots of options.
If I were in your shoes I would be considering consulting with the Weisenthal group regarding your next treatment. You are overdue for a treatment that is really effective, the dart board approach has not been working. It takes some planning because the biopsy they require is more involved than the usual fine needle biopsy.
Always here to chat offline. I think knowing your next move will help. Thinking of you.
>Z<
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Yes, zarovka, my onc says we don't know if the cancer is still "functionally" ER+. She says a liquid biopsy to check ER, PR and Her2 is three to four years away. She has always been reluctant to do a liver biopsy on me because of the risks associated with the type and location of the tumors. But I will talk to her about the kind of test you mention, that actually checks response to various chemos, using biopsy tissue. She did say we could use a Guardant or Cyndenio liquid biopsy to check tumor mutations. So that is something. I don't want to fly blind here.
You know, I had one year of normal tumor markers after finishing Taxol. My onc says the average PFS after Taxol is nine months. So it makes me wonder if Ibrance + letrozole were actually working, or if I was just coasting on Taxol benefit with a slowish cancer. Because for the next year, the markers crept up slowly. Also, I did recur on Tamoxifen. I have always believed that I had a Tam-resistant variety of ILC, but what if it has been resistant to endocrine therapy in general the whole time? Just some rambling thoughts. It helps me think to share them.
So, I guess the next treatment would be radioembolization or chemo. I've got my eye on Gemzar for two reasons, even though it is intravenous and not a pill. First, it appears to be a chemo that does not typically cause neuropathy or hand-foot syndrome. (Gotta keep dancing.) Second, I read something that indicated it might be effective on tumors with a PI3KC2B mutation. What kind of patient picks out her next chemo ahead of time?! Thank you for saying "at least for a while".
But this current combo really needs to work because I just tried out for a very special dance event later in the year, and I had to convince them I was up for it. My onc said she is "cautiously optimistic" because I feel well, and it does not hurt when she presses on my liver. (The normal liver enzymes I don't put much store in because they were in normal range when my liver was full of tumors in 2014.)
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Shetland -
Yes, a good stint on some kick a$$ chemo may re-sensitize you to hormonals. This guideline is not widely followed. You need to mention it when the time comes.
What I am proposing is functional tumor profiling rather than the genetic tests you listed. Genetic testing is intellectually interesting, but not demonstrating outcomes. In the Moscato trial results, just published, only 2% (22 out of 948) patients who underwent a tumor biopsy ultimately get any benefit from genetic assay testing for targetable mutations. Among those with an identified actionable mutation treated with a targeted drug, 11% demonstrated an anticancer response. There are many other trials with results like this. We don't understand the relationship between genetics and treatment decisions yet.
Functional tumor profiling takes your actual tumor cells and tests various treatment options on the actual cancer you have. This approach has problems when you take a small sample and try to grow the cells for testing in the lab. The Weisenthal Group gets around that by taking a large sample .. they don't try to grow your cells in a lab, they use the cells that were actually in your tumor.. Something to consider.
All that said your gut has served you very well. Gemzar is awesome. Radioembolization/Y90/TACE is on my short list.
I am glad you have something important and engaging coming up. You have no business worrying about cancer when you have made that kind of commitment. These people are counting on you so stay focused on your dance. Feeling well is the best medicine.
I am just plain optimistic, even though the transition will be a pain.
Sleep well.
>Z<
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Shetland, what kind of dancing to you do? Sounds wonderful.
Zarovka, very interesting about this Weisenthal Group testing. I have never heard of this but it makes sense. Unique approach. I am going to mention it to my MO, although, like Shetland's doctor, he has been hesitant to do a liver biopsy. Have you done the Weisenthal testing or do you know of anyone who has? Is this something covered by insurance? I am also curious if insurance would cover a drug that may work based on this test but is not FDA approved for the specific purpose for which it would be used. On a separate note, are complementary MOs covered by insurance?
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I've followed closely several people on Inspire who use Weisenthal or Nagurney to do functional tumor profiles. I have not done it myself. Weisenthal trained Nagurney. Nagurney is more visible on the internet, better marketer. It's been effective although getting the sample is not always possible, or advisable. The sample is the issue. They need a gram.
The cost of the test is covered by some insurance, not others. It's something you have to check. I've never heard of the treatment cost being denied in the US, but these are great questions for the providers. I am sure they have the answer.
Most of my complementary care is not covered by insurance; however, the cost of complementary treatments themselves ranges from zero to more then I can spend. Budgeting is a part of this. If the treatment options gives you feelings of stress for any reason, my belief it is a bad idea. With complementary care, you have to be good at taking what you like and leaving the rest. That does mean saying no to people in white coats. Not for everyone.
Just a string to pull if it speaks to you. Instinct is everything.
>Z<
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Shetland,
I have been on a tumor marker roller coaster since November. I had intermittent right flank pain, then mid back pain November through January. Tumor markers rising. PET scan in February basically stable, but rising tumor markers still a concern. Falsodex looming on horizon. Long story short: pain went away, MO says "OK, we'll go another month and see what markers do". March tumor markers down, so who knows? My point is: something got stirred up and then resolved. My markers are high( like upper 300's). I feel so optimistic that your scan will have good results. maybe things are going to take a bit longer to settle.
I admire that you already have a plan in place, though.
may the force be with....MJH
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Thank you for that, MJH. May the force be with you. When I feel liver aches, I think my drugs are not working. When I don't feel liver aches, I think the drugs may be working. I wonder if my onc will suggest giving it once more month (it has been two) if the scan is worse, or if we will make a change. I suppose it will depend on how much worse it looks. Maybe I should go exercise like a madwoman in the next two weeks.
Or like Zarovka. Is that the same thing?
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Shetland - Personally, I think dancing is adequate exercise. You seem to think you don't exercise, but you do. Whatever benefit exercise can provide, you are getting.
>Z<
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Oh yes, I agree. But I take a two or three days off dancing each week so I don't injure myself, and I feel I should walk on those days, so I get some cardiovascular exercise every day.
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I am finally on spring vacation and away from my desk for a whole week so will venture out for the first time today in my new neighborhood. It's been snowing for weeks but today is finally dry. I know it will be slow going but I crave the movement. Shetland I envy your dedication to your dancing. It is soooooo hard for me to fit in fitness with my job and commuting but absolutely have to renew my commitment. Winters are tough. I am so glad our new house has a workout room and pool!
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