How are people with liver mets doing?
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Bluebird - I am not an expert in dehydration but there is something about drinking straight water that can dehydrate you. One alternative is gatorade but that's a lot of sugar you do not need. I use this LyteShow (3 Bottles) - Electrolyte Concentrate for Rapid Rehydration - NO Sugars, NO Additives - 120 Servings (With Magnesium, Potassium, Zinc)
Don't second guess what insurance will do. Everyone has different companies and different advocates. I know numerous people who did Abraxane first. I will demand it myself.
>Z<
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Thank you Kaption and Wendy. I guess I’ll wait and see what starts climbing. Just a constant worry and it seems like my runs with these drugs last about 8 to 9 months and then things stop doing the job. Thanks for you input.
AnimalCrackers, sorry for your situation. Have they thought of taking her off all drugs and starting on a new psychiatric drug? When I first had all the breast cancer issues my really good friend who is a forensic psychiatrists told me to go off Ativan. That is just a temporary relief. She recommended Clonopi. Spelling might be wrong. But it took my pain away with a .5 dose. It took all my anxiety away and my stomach issues from nerves. This last episode with MBC I asked my PC and he prescribes it for me. It might be worth a try. On the street it’s called “mind eraser”. Haha. Give it a whirl for her. Might work for her pain. It’s not an opioid it’s in the Benzo class of drugs.
Good luck and hugs to all.
Anita
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Z.....thank you for link about water flavors. For months I have had elevated creatine...prior to gall bladder surgery. It prevented contrast dye for cts and mri. Doctor keeps saying water water water...I just am lucky to get 3 glasses daily pkus1 or 2 juice smoothies so I am hoping this will give me a boost and I can knock those creatine levels down from 11.....thanks again
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Schoolmom, is it your creatine level or creatinine that is high? If it it the creatinine level, you should check with your doctor before taking electrolyte-enhanced water. Many people with kidney issues that cause increased creatinine should avoid drinks that elevate potassium and other electrolytes because the compromised kidneys might not process then correctly, and levels in the blood might become elevated. On the other hand, I know nothing about their effects on creatine, so it could be okay.
Lynne
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creatinine levels.....ok. Will verify with him before I start thanks for heads up. Blood levels are already over 11...
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Bluebird - for stage 3, I had 6 rounds of taxotere with cytoxan and became allergic to taxanes (taxotere, taxol, etc.) - nasty drug rash. FYI insurance approves taxol because its cheaper than the protein bound Abraxane. I've been on Abraxane for 5 mos and responding. It is more tolerable and easier than taxol, but you will lose your hair unless you use cold caps. Please demand it if you can - insurance companies are cheap but it's your life. I am with Z here.
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Thank you all. I am looking into myself and to experiences of others too and seeing what I need to know::::: are these people just talking down to me like I don't have a brain or life experience to find my way through their wall of inaccuracies about insurance and drug choices. I see clearly that they are just putting up an unnecessary wall and I do not know why they would do that on purpose. If not on purpose, then that means there is true stupidity on their part. And I feel very angry either way.
I am in process of being referred to a new oncologist for either a second opinion or just referred. I asked DNP's office to do this. No time to fight w or wait on this other onc's next move. I had already formally requested a referral to a doctor in that center and he has not acknowledged my request or said no but I can refer you to someone outside the practice.
Liver - still sore but am improved. Cannot lean to right side or over, sleeping is all right. Morphine still in cupboard, untested. If I never have to test it for pain control it will be all right with me.
Urine - now light yellow since yesterday afternoon and good today when I woke up. I do do my raspberry seed powder in yogurt, ricemilk and raspberry jam smoothie, it never coloured urine. So am getting some food source. Also testing a tea I drank to see if it coloured urine that dark dark brown. We will see.
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AnimalCrackers, you could suggest your mom's doc consider the Genesight test which is available in the USA, to see how she would be expected to respond to various pain meds.
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Hi all, hoped you had a wonderful Christmas, here in South Africa we celebrate Christmas in warm sunny weather, so Santa is usually wearing a bikini hahaha...Anyways, I have another question. Do you know if a,benign tumor will respond to chemo? My RO is fairly certain now that four of the five lesions on my liver are cysts, but the one that shrunk from 2cm to about 5mm is obviously assumed to be mets, even though I never had a biopsy. I don't want to live in la la land off course, but just wondered about it seeing that the others are not malignant...Thanks!
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I would think a biopsy is the only way to confirm. My biopsy was for 3 small lesions but they only took tissue from 1. I had gall bladder surgery 5 days prior and they decided to do it that way. I have heard that lesions can vary by cellular makeup.
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I am starting to worry that they screwed up my port installation. It still burns at the port site and along the tube to my vein one month after the port was installed. The whole nearby right shoulder is in pain. Referred pain from liver mets or screwed up port installation? Two oncs and a registered nurse have looked at it and they don't "see anything wrong". My friend gave me a topical pain relief spray developed by her dermatologist and derived from birch bark. If it weren't for this stuff I couldn't sleep or get out of bed. My understanding is that she uses it for pain caused by damaged nerves ?!?. In any case, here's hoping it last long enough to get me to the US in two weeks where I can talk to the IR who installed the port.
>Z<
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Z, if I do too many planks or lift too much weight, the port site burns for a few days. I adjust so not to irritate the site further. Not sure if this applies to you. Hope your port site continues to heal and not cause you future concern.
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Z/ I still have one side directly by my port that hurts. And if anyone gives me a hug or my kids lay on my port site it hurts. I figure I’m still healing.
I’d watch for redness around the site or a fever in you to indicate signs of infection.
Sorry you are still in pain.
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I don't have so great news. My liver enzymes are bad.
My liver isn't functioning properly.
38 is normal for AST. I am 135. 47 is normal for ALT. I am 242.
Dr Toma is cutting the gemzar in half to see if that's what's causing it. If it's not down next week, we will do a scan or MRI to see if cancer has spread. It could possibly be partly due to the cold meds I've been taking too. Anyone else have this issue? I had 4 liver lesions when we started. Only had 2 treatments before today's blood work.
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Z, sorry to hear you are in pain and concerned about your port. I've had my port since February. Both the port site and the tube into my neck were uncomfortable for a number of months but not to the extent that I couldn't get out of bed. I still guard both sites particularly when my grandchildren are around. I love the port and am willing to deal with the slight discomfort.
kaylynne, I take cold/allergy meds on a semi-regular basis and they don’t affect my liver enzymes. I hope you find a good answer to your problem.
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Thank you all for sharing your experience with the port. In that context it seems more like a "normal" level of pain which, at least, helps me enjoy my vacation. My fear is I got back to my exercise routine too early and did something to the port, but maybe it's just normal healing. I am doing a lot of planks and yoga. I can't tell if it helps or hurts in part because this spray is so effective at eliminating the pain.
Kay - I have very little experience with elevated liver markers but the first time they went up significantly was in response to a couple of small (600mg) doses of gemzar. Prior to taking the gemzar, mets took over 20% of my liver without registering at all in the liver markers. For me, elevated markers have been a reaction to the meds and not an indication of liver mets. Now they rise again and I am teasing out the cause. Scans at the end of the month will tell ...
>Z<
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Kay, My liver enzymes have always been perfect, but rose slightly on the AA combo. I do know some of the meds can make them rise. S
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KayLynne, my liver enzymes are typically in normal range but have jumped a few times when I was sick.
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Z: Thought I would share my port experience: I was not excited about getting mine, to say the least. I had a PICC line for my early stage Tx. I had a history of neck injuries and was avoiding at most-if-not-all costs anything near it. The IR who put my port in did manage the pain well at the procedure but by the time I got home, I was in excruciating pain. Had to go back the next day. They concluded it was a minor injury from the installation process and gave me a Rx muscle relaxer and Tx strength .. either Tylenol or Ibuprofen. While it improved dramatically within 48 hours, it took several weeks for the bruising and pain to get a lot better. Now, it's ok on a day-to-day basis. The area is still very tender. Can't get anywhere near it, even to wash it in the shower and it hurts like hell it anything touches it .. but if it's left alone, it's ok. Really hope your pain improves.
Momallthetime: So terribly sorry about your distress and the insensitive treatment you have been subjected to. I so frequently find myself agog at the healthcare system ... or healthcare providers. Oh, for a bit of bedside manner.... Peace be with you!
Bluebird and others re pain: I had bad pain in my liver area for many, many months before I was diagnosed. My doctors insisted then and continue to insist that it is not a known symptom of cancer that has metastisized to the liver. I was shocked. Defies common sense. Hope your pain is better!
Animalcrackers: SO sorry about your mom. No similar experience with opioids, although my dad had a bad experience with general anesthesia recently and my brother and I both have difficulty metabolizing lidocaine (based on experience). I have not done a pharmacogenomics test as referenced by Z but have run my genetic test data through more general online analyzers and they revealed "risks" consistent with my experience with lidocaine. Sure hope you find something to help her. As the "designated daughter," these situations are distressing.
I don't get on here as much as I'd like so here's an update: My liver enzymes and TM's keep bumping around but nothing too bad. A recent scan (MRI) showed that the tumors are responding to the chemo (thought not quite as fast as we'd like, ideally). I have a PET in January. Trying to not think about it, thereby avoiding as much scanxiety as possible. If things look good, they'll lob me over to IR to see if ablation or something similar is feasible (which sounds good). If not good, we'll probably try a different kind of chemo. The chemo is making me more tired and sick than with my early stage Tx and that is a bummer. Had another bout of grade 4 neutropenia so they had to up my colony stimulating factor to 5 doses vs. 3 ... which is ... sobering.... Just trying to rest as much as possible (which makes for a very hermit like existence). If I am repeating myself, I blame it entirely on chemo brain!!
Here's my semi-rhetorical question du jour: seems like every time I turn around these days, I am being encouraged ("offered an opportunity") to sign a DNR. I'm (relatively) young. I work full time. I am on my first line of treatment. We found the metastasis early ... not because of organ failure. I feel very free to say "no, not there yet..." but the "encouragement" seems inappropriate. (My jaded self wonders if this is the healthcare system trying to save money.) Anyone else had this experience? Have pearls of wisdom to share?
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Lumpie - I appreciate your experience. I was sold on this port thing because I was told I wouldn't notice it. I don't mind the discomfort and I greatly prefer IVs through port, but it just made me nervous that I have so much going on around the port when it was supposed to be "nothing". I am terribly sorry to find that is difficult for many, but comforted as well because it seems normal.
I have a DNR. I signed it a long time ago along with my living will and my regular will. It gives my family the authority to pull the plug if I am basically a vegetable and there is no apparent path forward for improvement. I don't want to be around at that point. It could be a car accident that puts me in that state. The truth that we are more likely to get to that point, but it's a good thing for everyone to consider.
It is an important document and not at all equivalent to giving up your will to live. More like asserting your right to die with dignity.
>Z<
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I too have had a DNR forever- even before I was diagnosed with MBC. I was always afraid that my husband who I love dearly would keep me around way past my time go. Yes, hospitals and dr in the USA do ask for one as a matter of course once you're "sick." MSKCC always asks me when I have a procedure done!
Babs0 -
I have a DNR order in my living will. I did it when first diagnosed. It is standard procedure and meant to make sure your wishes are honored. It is a little morbid when they ask about it, I agree. MJH
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I am completing my living will on Wednesday w a counselor at the center. Hubby too. We wish we had done this years / decades ago. The DNR is part of the forms we will fill out.
Liver pain, it comes and goes. Does not like being jostled. Cannot lean over or put on socks without aggravating. And I find using my shoulder is a problem and ensues pain then and later the pain is the worst, so right shoulder relaxed is the way I have to live right now.
I submitted a post yesterday on here and two other threads and all were lost due to snow here.
Experience, Strength and Hope -
if something I share here helps others to get the liver lesions diagnosed and dealt with by cryoablation or radioablation or SIRT or whatever is minimally damaging to the entire body, I hope they pass it on too.
Catching us up - I decided to go to yet another oncologist when last one told me to get set up w hospice though we probably wouldn't be using them in the next few ***WEEKS*** he said, and I did not like that attitude. He got only one appt, I went to the next -
New oncologist looked at my records and asked nurse to see if I could come in same day - took less than 48 hrs from first phone call to have me sitting with him. WOW! I like him and trust his approach, it couples w my own instinct for survival. Get stronger, just take aromasin for the next month then we will see how I am set up in strength to handle something more aggressive if I should want to go there. He said no to the Taxol and no to the afinitor the other onc had said yes to, he also thinks the afinitor could help while fired onc had set me up w that rx and wrote in his notes that he thought it would rather small effect - seriously, then why would I risk my life, health and time on it, he needed to think harder. So I am on aromasin and taking a month to continue to heal. Which means eating too.
He said hospice is a difficult discussion to have and his face just fell, but he said if I wanted to explore hospice then this is a good time, and that we still have options.
Now.... about our own liver warning us there is a problem. Mine first acted up summer of 2016, there were no lesions showing in PET CT iend of Oct or the April before BUT I felt pain in the area where lesions developed. When I walked it would twinge, when I leaned to right it hurt! I went on Ibrance / Femara for a few months and it stopped and the scans showed improvement, though lymph node masses did not. So changed tx. Xeloda. And that did not work for liver.
When I was on Xeloda this year I wondered if the pain was the dying off cancer cells or was the Xeloda not working at all. Turned out it was liver lesions growing rapidly. I just felt like something was gnawing away in right side, which is lobe 7/8 area. Then I felt like there was a pocket of fluid on side by bra line, could not stand a waistband or bra over the area.
The whole time, I told the nurses, the radiation oncologist and the MOs, answers were always about dealing with the lymph node cancer masses that were killing me by closing off airways. And suggesting yet another PET CT - but all they had to do was order an ultrasound! simple, noninvasive and I would have said yes to that. Labs were perfect, as mine always are, even TMs and liver enzymes, so no one was concerned. By the time an Oct PET CT was done the liver lesions were so large they shook up all the medical team and there was basically nothing that could be done short of possible TACE (too weak to go through that) and radiation to shrink but wouldn't get rid of them.
So yes, liver lesions can hurt. And we have to be aware of what we feel and make sure we are taken seriously. Reminds me of a thread I started "Does breast cancer hurt?" The myth has been that bc does not hurt, half of people w bc are told by medical professionals that it does not hurt. And the focus in realizing the truth behind the pain is thrown off or delayed for too long and bc cancer grows. Liver too. Liver cancer can and does hurt for some. Whether through mets or primary liver cancer, if it hurts, make sure it gets looked at. I have learned to request my own ultrasound for liver, thyroid even breast lumps. Though I am not recommending foregoing a CT or PET CT.
My liver mention in the PET CT report when this was starting last summer said "a fatty liver." Never in all these years had my liver been called fatty. Then it was and shortly after it was many small cancer lesions. Then imporved on Ibrance and gone, then back and then hunky big.
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Bluebird - I learned a lot form your post and I appreciate the time and thought you put into it. I hope everyone learns that you have to keep fighting until you find an onc that is on the same page, whatever that page is. Still looking myself, but starting early.
>Z<
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Happy New Years from my very French grandson!
Babs
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🤣😂😅🤣Babs that's adorable Happy New Year🎉🥂
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Mom, I am just furious over the treatment you received. If we only had the power to put them in our shoes for one week or month or whatever it takes to develop some empathy and compassion. I pray for you all the time.
Babs, cute cute baby! Congrats!
animal crackers, soooooo sorry to hear about your Mom. I have found CBD oil to be quite beneficial for pain as has my girlfriend for RA. I even do that with a couple of Tylenol and it's amazing how well it works.
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All the best in the New Year to everyone.
>Z<
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The only drug I am taking right now is ovarian suppression and my hair has started thinning significantly for the first time. I guess it is just estrogen suppression kicking in after some time. Not pleased. Any thoughts or ideas appreciated. I know so many of you deal with this gracefully.
>Z<
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Is your hair still long Z? So after I did Taxol and lost all my bodily hair😳 I changed my thinking a bit. I had always had long blonde hair it was my thing. When it started coming out I shaved it all off and I started seeing myself the real me. The me without all the glitter it was scary to see if there was something more to Wendy besides how I looked. There was humour and love and a lot of strength I didn't know I had. I don't need the hair anymore cancer has been a teacher for me in lessons I would most likely never have learnt.
I love my short hair now and will keep this pixie thing going😊. You are a beautiful woman Z inside and out whatever is going on with your hair. If it's long and a lot is falling out maybe cut it shorter? ❤️
I also noticed my nails and hair is growing like crazy I've been drinking a lot of chaga tea and apparently the beta glucan makes nails and hair grow an added benefit of this mushroom☺️.
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