How are people with liver mets doing?
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Kaption - I am going to throw out a crazy theory for ya. Gemzar is a drug used to prime the system for immunotherapy. It suppresses immune suppression. Sorry for the double negative, but the end result is that Gemzar promotes an immune response. I am hesitant to suppress a fever in cancer treatment because it may indicate an immune response to the cancer. I believe that any treatment with an enduring response has engaged the immune system.
It's a complicated and individual question what is going on. But consider as a possibility that gemzar knocked out your T-regs and your cytotoxic T-cells woke up to the fact (hello!!) that you have have cancer cells they need to kill. When that feedback loop gets rocking, the fever can get pretty high.
>Z<
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z-thanks. And your discussions of immune cells and fever have made me reflect. I try not to treat the 99 degree fevers unless I’m too achy. But, when it shot up too 100.3 last night I got a little worried. I know the fever can be a good sign. I just don’t want an out of control infection, especially since I’m allergic to many antibiotics.
Your comments have made a difference in how I’ve reacted to these fevers. Thanks!
I have a message into my nurse so I’m ready if I have to make a call to the on-call doctor after hours.
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Miaomix - love your humor re: A-phonytor aka A-fakitor. That med/crap did nothing for me but make me worse. As to dexamethasone mouthwash - I do use that and the Biotene wash for dry mouth. None of the others work for me (magic mouthwash takes like a ripe diaper and doesn't help.) Mouth sores just got so bad during head rads that I have a double blister under my tongue and several ulcers on the left side of my mouth which is still swollen from my fall. Had a little breakfast today and getting ready for work, then fluids at 3:00pm plus ice cream when I get home. Hoping the scales stay the same or more. Rooting for all of us. I will be curious what my TMs are with 3 weeks off xeloda, but I think the skull met got cooked by the rads - cant feel it anymore.:) Kaption - are you sleepy on Gemzar and did you lose your hair? Spring is coming soon to KS (Kaption) and NM (Z) and even CA (for me and Artist). I am very worried about her. Z- are you just taking Fulvestrant alone now? Robin - rooting for you on A-train - enjoy the ride. JFL hang in there!
(()) Claire watching my cat watch birds this morning
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Claire yes, Spring weather is inching in here. Nice, much needed rain today.
I am sleepy on Gemzar. On all 3 weeks I slept almost the entire next day. It slowly improves over the week. I haven’t had hair for quite a while. Think Abraxane took it this last time? Actually on the month between Adriamycin and Gemzar it started growing back and seems to still be trying. Don’t even think about my hair anymore.
Hope your mouth heals quickly so you can get some nutrition. Are you still mostly working from home?
I am also very worried about artist.
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Kaption - I would get terrible chills and fever the night of my treatment—sometimes higher than 101...ibuprofen or acetaminophen didn't help. I would wake up the next day feeling fine, and then the next night (the 3rd night after treatment) I would get the chills and fever again, and wake up feeling fine the next day. MO wasntconcerned about the fever because it was a known side effect, and the hope was that it was a signal that it was working. That went on for 2-3 months, and then they added dex to my pretreatment before infusion. The fevers stopped, but so did the Gemzar. I only lasted 5 months before progression. I sometimes wonder if we didn't add the steroid if I would have gotten more time. The chills/fever were pretty brutal for those 2 nights a week though.
Take it as a good sign—Gemzar is working.
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I am still worried about Artist. My concern grows deeper as each day passes.
Lynne
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Thanks, kc1010. That’s what I’m hoping.
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Kaption, I've had some mystery fevers while on Taxol (14 months now). Several have been like you describe-- up to 100.5-- but sometimes they spike over 102. Also, back in February 2016 while I was on Xeloda, I had a mystery fever that peaked at 105 and parked there, and for that I went to ER. They ran every test you can think of and found zip zero wrong with me. I was fine the next day.
Generally, I let the fevers burn. I try to max the opportunity by visualizing BC cells as grotesque cartoon ghouls shrieking as they melt in hell. LOL
Just curious, what is your normal temp? Mine is 97.6. Many years ago here on the boards, there was a discussion about temps and we discovered that quite a few of us normally ran cool by a degree or two. Interesting, right? I raise my core temperature fairly regularly with baths and such (though I am watchful and cautious with heat due to lost lymph nodes). Maybe it helps, who knows. Can't hurt.
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lulubee, my normal temp is usually a little over 98, but I drinks lots of water, so it's hard to catch a time when I haven't just had a drink.
Do all of you get the warning to call in immediately for a temp of 100.5 or higher because of neutropenia?
Nothing else I have taken has caused even a 99 fever. Maybe this is the first chemo to be working!
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Thanks, LindaLou, I am thrilled someone is monitoring the strong responders, we want every bit of info to make a decision about drugs!
I check in here to learn what SEs and treatments are upcoming, but LALADY, really? You got a mouthwash tastes like a ripe diaper?! That's gotta be way up there on the list of crap to avoid (along with A-phony-tor)..
Kaption, You are getting the best advice on fevers, we want them, and maybe is a good sign, but they should warn us about this stuff!!!
And mostly am worried for ARTIST?!!!! Hope she is healing, recovering, strengthening, winning...
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Kaption- this may not be relevant, but I experienced neutropenic fever during my first chemo for Stage l BC. (Total WBC = 0.4). Instructions from my MO are to call with any fever over 100.5 also. By the time I called, my fever was over 102. I also had a bad cough.
Went to ER, had full work up. was put on antibiotics. Final diagnosis was "neutropenic fever with viral bronchitis and hypokalemia". I have never felt so sick in my life. Took me several days to recover, though I don't think the antibiotics were contributory, since infection was viral.
Hope your fever resolves after eliciting a whopping immune response.....
Best, MJH
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Thanks MJH. That does help. Yes, my wbc is very low too.
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Kaption - If it's an immune response to cancer, 103 is about right. If it's an actual infection, treat it. But I would want proof before I treated it. I personally wouldn't take drugs to suppress the fever either way. The heat from an infection can cause the immune system to turn on the cancer. Just my way of seeing things.
Yes, heat is good. I have a thermometer that says my temperature is about a degree below normal. I thought it was broken, maybe not. In any case I have a big heating pad for my bed and I can't get enough of it ...
Lalady - Faslodex alone as we evaluate the response ... Glad the mets are gone. Looking forward to the next update.
>Z<
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Z how on earth are you managing a clear liquid diet? It will be Tuesday when you read this so I guess you will be starting to increase your food choices. With your determination those cancer cells should be dust!
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Good morning all, I’ve been reading the discussion of fevers with alot of interest. Over the past six months, I’ve been getting regular low fevers as well- first on ibrance/faslodex and now on exemestane. Even when I an not neutropenic.
I havent seen a correlation with my two primary liver mets (they seem to continue to grow slowly). But I have wondered if my immune system knows something is wrong, but just not what to do about it. Or maybe its keeping other mets at bay. I got autoimmune hepatitis after a reaction to kisquali on trial, so have always thought my immune system is a bit wonky anyway
Sorry, I dont have any words of wisdom to add, but thank you for continuing to educate me!
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I’m very worried about Artist. Anyone hear anything?
Bab
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My post on the Metastatic Breast Cancer study was deleted until permission and review are granted. I will repost if approved.
I had a bad reaction to Gemzar/Carbo duo, so not sure if it was the combo or one of them separately. I did have a fever as well.
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Lindalou. I read the study and was planning on reading it again. Why did you have to delete it? It's not published yet? I participated in that study, at least I think it's the one. I know Dr Nagle was in charge of it. But I thought it was Broad Institute at MIT.
Thanks for putting the link on here, I look forward to reading it again.💞
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50sgirl ,i am worried about artist too. Till now no reply from her on my pms and she usually replies the same day. :
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Thinking of Artist. I hope she is just busy recovering from recent blood clotsor taking a break from BCO.
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Even when I don’t have time to post, I am checking twice a day to see if Artist has posted. I hope she is just taking a break afrom BCO, but I have a terrible feeling in my gut.
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LALady- I can't wait to get off the A-phonytor which should happen soon, I have a pet scan next week, and regardless of progression, I'm going to ask my MO to switch me to xeloda. And then take a long trip to Italy to visit my family. Everyday there's a new SE with this drug. I have been coughing all day long and have developed a pain in my right flank again. I will stop taking it for couple of days, that usually clears the SE, but I worry that it's cumulative and it's doing real damage somewhere.
Best wishes for a good appetite and great results from your TX.
When I've lost my appetite in the past, I have successfully used a natural supplement called D-Ribose, it was prescribed by my functional doctor to lower my blood pressure, but I discovered that it also stimulates appetite in the most amazing way. However, no more than two serving @ day.
You can read more about its benefits at the life extension web site if you think it might be useful to you.
Take good care Claire!
http://www.lifeextension.com/magazine/2008/5/d-rib...0 -
Shetland, hoping your gut is wrong in this case as I am sure you are as well.
I start Doxil on Friday. Feeling super relieved to be off Abraxane and the cold caps. I am expecting to Doxil to be tolerable and effective. I hope I am correct about that. Can't wait to have eyebrows and lashes again!
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found out yesterday my liver tumors continue to shrink.
Bad news is new treatment doesn’t pass blood brain barrier so I now have 17 lesions on my brain to deal with. Ugh! Now to find the right combination of Meds that will pass BBB and treat my liver tumors.
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Update on liver ultrasound. Hope there is something in here that teaches or helps someone else.
I had an ultrasound of liver in Nov 2017. New ultrasound in March 2018.
The dominant lesion in # 8 lobe decreased in size by 2 cm.
That said, the radiology report said lesions too numerous to count. Where this was the same as before.
Report does not mention the other two lesions that were very large.
What ticks me off to no end is we go to have these scans and US and wait for results that are UNCLEAR! NOT COUNTED! and INCOMPLETE RESULTS! while we face life and death decisions.
Also one would think if the liver is scanned then they could mention what is seen in the gall bladder and pancreas. But no, not on mine anyway.
But at least I have the dominant lesion is 2 cm less.
This doesn't tell if the cancer uptake is higher or lower or non-existent.
I understand the cancer cells can all be dead but the lesion remains for awhile, a long time or forever.
My pain is only when I do stressful movements at a high rate of repetition. Coughing, brushing of the dog, stirring batter.
The gnawing, soreness of liver cancer cells going to town has stopped long ago.
The problem is the ALT and AST SGOT are high. I don't know how long these labs have been high but it bodes ill for bile duct blockage, though the scan said no ducts are blocked.
I see through a search that these could be high if a patient is not told to discontinue these and I have recently been taking NSAIDs, anti-inflammatory meds, and a tricyclic antidepressant and sometimes codeine cough syrup. Yup, all in the last week. So here's hoping it is a false alarm about liver being worse.
- Allopurinol
- Antibiotics
- Anti-inflammatory medicines
- Birth control pills
- Certain diabetes medicines
- Chlorpromazine
- Cortisone
- Male hormones
- Methyldopa
- Narcotic pain medicines
- Nonsteroidal anti-inflammatory drugs (NSAIDs, used for arthritis and pain)
- Propranolol
- Tranquilizers
- Tricyclic antidepressants
I read this thread w rapt attention and appreciate all the knowledge and sharing. My life leans into yours as we walk the same trials and errors and successes.Diane
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JFL. OMG re brain mets. Hugs. Please check in and and let us know how you are doing.
Interesting report on the ultrasound, bluebird. Thank you.
>Z<
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Worried about Artist too. It’s not like her to be away so long. Also worried about patty
Bab
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JFL - curious if you have looked into Nerlynx for her2+ treatment? It does cross blood/brain barrier and I have a friend with brain mets at my clinic who just started it? But I am not sure it is used commonly in metastatic setting?
I learn so much from all of you.
Praying for you Arist
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I think the brain mets advice is for leftfootforward . . .
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