How are people with liver mets doing?
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Z, I've had many many MRI's and I like the contrast and detailed images that only an MRI can provide. In some cases, a contrast material, typically gadolinium, may be injected through an IV line into a vein in your hand or arm. The contrast material enhances the appearance of the images. It is given about 15 minutes before end of the scan and circulates through the blood stream and then is absorbed in tissues. The MRI of my liver recently showed hemangiomas and cancer lesions as well. It is quite remarkable to look at the images, but then I like that kind of thing. My MO and I go over the scans together. Insurance can sometimes fight the approval of an MRI, because of cost, so coding is important. MRI's are expensive but IMO worth it.
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My last PET mentioned my 2 relatively new (and first ever) liver spots. The radiologist recommended follow up MRI, but my MO, who is usually quickly to do any and all scans, felt the MRI would not tell us more than we already know and would not change my current treatment. I’m sure she would have done it if I’d pushed it. But, she said we’ll watch TMs (which are accurate for me so far) and repeat the PET in 2 months instead of 3.
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Z, I totally agree with you that you should change to MRI if you are looking for liver met progression. As soon as I went liver mets my MO started doing MRIs. But what I was trying to say is the first one really can't be compared to a CT. It will be the second one where they are comparing MRI to MRI that will really give you your answer. Each modality is very different and each modality is better for some things than another. With liver mets, MRI is definitely the modality of choice. As far as contrast, the contrast follows the vascular system of the body. It is a timed process that they start scanning when the contrast is in the liver. The contrast enhances the liver and therefore makes the liver more visible. Cancer is always very vascular. So, they like to do a without contrast first, now the lesions that are seen on the without is compared to the lesions that are seen with contrast. If the lesions enhance with the contrast, that indicates that it is cancer, if the lesion does not enhance then typically it is not cancer. I hope that makes sense. Sometimes it's hard to explain in writing. But I would recommend it being done with contrast, it helps them to know what is cancer and what is not. Is there a reason why you don't want contrast? If this doesn't make sense, tell me and I will try again. Praying for you.
One more thing, it is crazy that it wasn't picked up for 9-12 months on the PET. I would really question the radiologist reading. That is really scary to me.
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Z: my ct scan did not show any liver lesions. My MRI showed multiple liver lesions. So now we only do MRI on my liver with and without contrast. I was blown away that the ct scan was negative but MRI showed liver lesions. I had 3 radiologist read the ct scan and they all said nothing showed up. I think the MRI is the way to go for you
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Kandy is correct, you want the contrast due to cancer vascular uptake of liver lesions. Dead cancer liver lesions do not uptake according to my MO. She only orders CT with/without contrast every 3 months for apple to apple comparison. I ask for the same RO to read. I have never had PET scan.
Z..hoping those hypoattenuating lesions are liver cysts. Glad they are quickly getting better answers for you. Keep us updated. I, too, am looking at what Plan B and C might be in my future.
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Hi Z - just adding my two cents to the liver scan modalities - I have never had a PET scan. I only get CT scans and Bone Scans and MRIs. My liver lesion was picked up in my CT scan when it was 6mm and reported back as indeterminate. We waited and watched it and it was picked up again by the next CT scan at 1.3cm. I was then sent for an MRI because that is more sensitive and it showed up there. Then went for liver biopsy.
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Sandi - Very interesting comment about contrast and CT's. I hadn't heard that but it makes sense.
Kandy - I understand CT and MRI are not comparable if you are trying to measure a small size change in a tumor. However, if you are trying to confirm an ambiguous CT finding it is something that is commonly done. In a nutshell the MRI gets more detail than even a CT with contrast.
Kaption - I agree that if you can clearly identify your mets with CT, then an MRI is redundant.
Lindalou, hatrish, folks getting regular MRIs - are your MRI's with or without contrast, or both? Do you have any opinions or comments on that? Does the MRI give you any sense of whether the mets are active or necrotic?
Thanks so much. It was very nice to wake up to this flurry of information and support. Stagefree's death is a gut punch. There is another lady named Laura on inspire who was an awesome warrior who is no longer posting. The dark clouds are rolling in so I am a rather down about the possibility that my liver may be only 60% functioning liver tissue.
Anyone find their liver came back to normal tissue after extensive mets?
>Z<
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Z, All of my MRI's are with contrast. I have developed a reaction to the gadolinium so I now have to take steroids before and after. The MRI difference in imaging with contrast is pretty remarkable and is so detailed. My images always show progression. My RO said that if the lesion is indeterminate, then a biopsy is indicated. The liver MRI only takes 40-45 minutes.
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Z, I'm definitely following you cause I think we are about at the same place as far as progression goes. It is a scary place to be. I also have 30 plus lesions in my liver and it happened very quickly. How are your liver functions? Are they being affected yet, mine is hanging on to normal limits which is something we are really watching. My MO says I have a very smart cancer, don't know why I was so lucky to have got that. Why couldn't it be dumb and lazy. It sounds like our cancer are very similar.I'm hoping and praying that abemaciclib is the right drug for you. But I wanted to know what the difference of that and Ibrance is? Is there a lot of difference in the 2 drugs? I googled it and really didn't find an answer. Our situation is nerve wrecking but hold onto your faith that this is the drug that will push it back to the curb. I've started Ibrance and it is going good so far. The thing that scares me is my MO says it will be 2-3 months before he knows if it is working. If it's not working I'm afraid that by the time we know that it will be too late for anything else to work. Grrrr, praying for the best for all of us.
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Z My heart fell out of my chest when I read your post. I'm glad you're having an MRI to ,hopefully, clear up what seems to be conflicting findings on PET. So scary.
My fuzzy brain is having a hard time computing all the detailed research posted by all of the brainiacs on this thread. But, it's sure good to know you're here. I'm counting on you ladies to give advice to me when the time comes.
Z It seems like you are benefiting from all the posts, too. I love to read your posts back and forth to each other, even though I'm not on the same level of smartness. Ha
I'll be checking everyday to see results of MRI, response to new TX and SE. Hope it will be good to you. Who knows, I might need to be on this TX someday.
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just logging on one last time. My mother lost her fight with cancer on Oct 19th. Now everyday just feels a little bit empty. She had tnbc ,died at 58 years of age. I'm getting the genetic testing done to see if I carry the gene. Might be a good idea if it runs in anyone's family here.
Its nice to see you ladies keep fighting. Never give up hope.
Christina
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Christina, I am sorry to hear about your mom. Thanks for taking the time to let us know. My thoughts are with you and your family.
Nkb, thanks for clarifying the Abemaciclib doses. I wonder if any MOs will try to get the higher dose approved with hormone therapy. I have also wondered what the whole deal with healed bones is. My MO hasn't mentioned the scan findings re the fractures and I forgot to ask him as I have had bigger fish to fry with him the last few appointments (lost liver biopsy sample and resulting lost opportunity to participate in a trial). I suspect the fractures were there from the beginning. I had the most pronounced pain at those two levels back then, although I had involvement up and down my spine. I don't know if a “stable" wedge fracture looks the same immediately after it happens (collapses) or if it changes as it heals and whether a wedge fracture could be “stable" right after it happens. It will never return to a normal rectangle shape on the collapsed side but Idon't know anymore than that.
Kandy, I too want a dumb, lazy cancer!! Why did we have to get the superstars?!
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Oh Christina - so sorry about your mom. Allow yourself to grieve but also cherish the happy memories. You take care of yourself. ((Hugs))
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JFL- i read the monarch 3 study and they started out with the 200 mg BID even with the faslodex and after one month they decreased it down to 150 mg BID- not sure why. It is daily without the week ( or more) off in between.
Taking my calcium, vitamin D and doing weight bearing exercises along with the Zometa in the hopes that the bones will get strong again.
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Christina, I am so sorry to hear of your Mom's passing. You should be very proud of yourself for advocating for her by trying to get as much information as possible on this site. Hold on to the wonderful memories you shared and take extra good care of yourself.
Very interesting discussion on MRI vs CT. I have had CT's only the last 3 times. My insurance denies PET"s. I get results Monday from latest scan and will definitely be asking about MRI.
Z, So sorry you had to have that shocking revelation about your latest. Like everyone else I am hoping it is a misread mistake.
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Christina
So sorry to hear about your mom. Sending thoughts and prayers to you and your family.
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Christina, very sorry to hear about your mom.
Zarovka, my wife's Onc's have always done MRI's with contrast dye for her liver. One time they did the wrong contrast dye, and it made the MRI useless. I think they prefer primovist here for liver mets. I asked about PET scans for her liver, and the Oncologist said it wasn't as good in her opinion as an MRI. My wife gets the occasional CT scan, but that's for lungs and other organs. The MRI of her liver covers the liver, some blood vessels such as umbilical and esophageal, and also shows her spleen. It also shows some ascites.
Following her cancer recession from Xeloda, several new small unknowns showed up on the MRI, they would be either new cancer growth, or nodules of regrowth of the liver tissue regenerating. Months later upon repeating the MRI, it was no longer there, so they don't believe it was cancer, that it was in fact regrowth of liver tissue. At this time, her MRI's show an image that is just like before, more of a psuedo scerosis, than classical cancer. In fact the radiologist called her oncologist to ask if a biopsy had ever been done, because it didn't look like cancer to him. In fact, it never really did look like cancer, more like wide spread cerosis. But, we know from the biopsy that it is cancer. So that's my experience with MRI's.
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Christina -
Thank you for your support. God Bless you, and your family. I'm very sorry for your loss. I'm sure your Mom was proud to have such a compassionate, caring daughter.
Take good care. Be well.
- Jee Nee
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Christina - you did so well getting information that could help your mom. I am so sorry to hear of her passing over.
Z - this you wrote rang to true to my moment of falling off the chair.... "The April scan report neglected to mention that I had 30+ lesions. The April scan report said my liver was completely clear." Except mine were 40+ lymph nodes around my breathing passages in chest that were active in April 2016 but not mentioned until November when it said "increased activity and size in multiple blah blah blah..." I had even taken a break from therapy because I had a gold star and WOW from my MO and was hoping the terrible cough would go away when not on Faslodex and Arimidex.
Question to anyone - The MRI - can this be done the entire body at once or does one MRI focus on one part like the liver? Or the bones only?
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Answering Momall - the alkaline water brand I am drinking is AlkaLife TEN. 10 ph. There are others from 7.8 and up. I use this because I have Sjogren's autoimmune, it's mixed connective tissue disease where the slaiva glands and tears stop producing, leaving me very dry. Water with a low ph leaves me completely raw and parched. This has helped though it is too expensive to keep up, need a contraption that creates a high ph water instead of buying.
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Well Z sounds like you have a good plan going forward. I can only imagine how intimidated your oncologist feels talking with you lol. You are so obviously knowledgable about all of the so no bullshit possible . I'm afraid to see my liver scan. With me I start dropping weight and my TMs go up immediately when it starts growing again. At least I get a heads up eh? Will be having a live biopsy as well do they hurt?
Was feeling optimistic today I got my passport renewed and I opted for the ten years lol. People don't get it what a big deal that is for us
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Christina, thank you for letting us know about your mom. You were a good advocate for her and she probably knew it. We love our daughters. Continue to heal your heart.
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Christina. I lost my mother from MBC, too. I'm sure your mom fought with every treatment available. Those type of fighters never lose their battle, in my opinion. It's the treatment available to her that failed her. Someday, there will be a cure.
I still miss my mother. There are no words adequate to help you get through this time. But, you will.
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Christina, I'm so sorry to hear your news. I lost my mom to bc and my sister to MBC. Hold your mom's memories in your heart, and she will always be close.
Bluebird, The MRI can be done on many different parts of the body. Entire spine from C-Spine to Pelvis takes about 1.5 hours. ( not my favorite) But all of those can be imaged individually. The brain can be imaged separately as well as any other organ, such as the heart, liver, or bones such as knee, hip etc. The imaging would depend on what area of concern you and your MO want to evaluate. It isn't a whole body scan like a CT or PET. Insurance often dictates what is allowable given the high cost. I think I'm the poster girl for MRI at my hospital, because of my extensive spine mets and pelvis and hip and ribs and all my scans over the past 8 years. Last month I got a candy bar from the head technician. They call the MRI the Linda machine now. Too funny. Speaking of ribs....I sneezed hard today and have fractured another one of my ribs. Ok....I vote we all get a break from cancer for while.
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Lindalou - Thanks for your experience with MRI. I'll be pulsing you with questions. I can't believe you broke a rib sneezing. Take care. So sorry.
Kandy - Scary and weird place to be indeed. If these lesions are cancer, they are mostly growing without being hyper metabolic …. higher metabolism than the surrounding tissue. Smart sneaky bastards indeed.
My liver function is 100% normal but I know from friends that it takes a lot to knock out this robust organ. I've heard it can regenerate too, so I am hoping I can kill these things and get my whole liver back some day. Hows that for optimism. That's how I think most of the time until we start losing people on this forum.
The one weird symptom I have is that I get skin lesions that don't heal … they persist for weeks. I have to go the sauna every day for an hour to just get them under control. When they get on my face is where I draw the line and sauna time becomes number one priority. I associate them with times when my liver is stressed. Wondering if anyone else has this experience.
Abemaciclib and Ibrance are CDK 4/6 inhibitors except that Abemaciclib is more CDK 4 and Ibrance is more or less split between CDK 4 and 6. The thinking is that cancer relies more on CDK 4 and Abemaciclib may be more targeted to the cancer with less side effects from activity that doesn't really fight the cancer (CDK 6). We don't know as it is all too new, but one can hope. Also Abemaciclib crosses the blood brain barrier and that is handy even if you haven't been diagnosed as we are all at risk.
Side effects are different as abemaciclib messes up your gut more than your immune system. I was hoping the difference between the two drugs was sharper on that point. In fact the difference is statistically significant but the abemaciclib does hit the immune system. I'm supposed to steer clear of the immune system for the next 6 months. Still pondering what to do.
In any case, Abemaciclib is sufficiently different from Ibrance that is being routinely prescribed after Ibrance now. Once my oncologist is suggesting something (and she's all in on Abemaciclib after Ibrance) it's old old news.
They are both slow acting. In addition, the way things are going now I will be off treatment for 2 months until we get through these diagnostics and proceed. I'd be totally fine with that if it weren't for the ominous dark ghosts on in my liver scan. Are you guys dead or slowly plotting my death, oh dark liver ghosts.
Grannax2 - The empathy is much appreciated. I have to be Ms Level Headed when dealing with my health care practitioners or they slip into patient management mode and lie, basically, to make me feel better. I have to act like them to get all the information and options. My emotions are mostly filed away in a lot of medical docs at the moment. But that sinking feeling … it means so much that you get it. Will keep you posted re MRI.
Christina - I am so sorry about your loss. Get some testing but mostly take tender care of yourself. You are fine daughter who did everything possible.
Artist - I spent the evening in the library … the only place with a Windows PC that will read the scan images. It is not entirely a mis read. There are a few more grey blotches then I knew about but the liver looks more than 60% functioning to me. Looking forward to an MRI.
Husband11. I read your post with extreme interest. If you find me grappling with weird MRI results in the future please remind me of your experience. I forget things but this is very important. I am so glad you had the experience of seeing your wife's liver heal. Hoping for the same for all of us.
Bluebird-DE - That appears to be what happened to me. These are hypo-attenuating lesions which means that they are less dense than the surrounding tissue and therefore not normal tissue. They only show up in the CT because they are not hyper metabolic. Since its a PET scan the CT results are are not reported. But I feel that is a gross oversight.
If you find a high ph water generating contraption or other method of getting alkaline water please post. I am very interested.
Wendy - It is really very good that you can tell what is going on with your body but not surprising as your intuition is your superpower. You will need to renew your passport several more times and therefore you made a wise choice.
Biopsies are not bad. I do need a drug that makes me too stupid to care and I hate not eating for 7 hours. Oh boy do I hate that. I do dial back situps and strenuous exercise after biopsies and that is a drag because the exercise effectively manage my nerves which are pretty raw at the moment. Otherwise it's just a poke and we've all been poked. I have to get a sternum biopsy and a liver biopsy. Originally they were scheduled for separate days and I then I thought why? Apparently there was no good reason for it. One IV, one day sedated, two pokes is the plan. It will be great. We can share stories.
>Z<
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Christina- much love to you and your familLu. Thank you fir letting us know.
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Z, I had those non-healing skin lesions when I was on Afinitor+Aromasin, and also on Xeloda. I had weird patches of stuff that took 6-12 months to heal, mostly on my face. Sometimes I would go to bed with clear skin and wake up looking like chicken pox. Skin is clear on Taxol, except for a few tiny white bumps that bubble up mid-week, which I am almost certain is from the steroids I get as a pre-med before Taxol. The dex gives me hot, red cheeks for about 24 hours-- I look like an alcoholic-- and then a day or two later, I get a few of the little bumps. They heal fast, so I cannot complain.
If you have never had an MRI, you should be prepared that it's a more nerve-wracking experience than a CT or a PET. MRI's are clattery noisy devils. It's like an oil well in a disco. You will want headphones or earplugs-- I can never really hear my music very well because of the ambient noise, but at least I can focus on trying to hear it. If it's a short MRI, I don't bother with the Xanax they sometimes offer. But the two times I was scheduled for a three-hour full-body MRI? YEPPPP. I took it and never looked back. My secret to getting through an MRI is to NEVER open my eyes. I close them before I am rolled into the tube, and I never ever ever peek. After ten years of BC, I still have no idea what the inside of that blasted tube looks like. Don't want to know, don't need to know.
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Z... also, I don't know if it's what you're looking for, but I use Alka-Lime powder by Young Living. I add it to a glass of water once a day. May be my imagination, but it seems to improve my energy.
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Thank you for all tips on my new MRI livestyle, lulubee. Everything has been noted. An oil well in disco. Hmm. Will bring ear plugs. MRI in a week.
I was able to move my biopsies up to the 22nd from the 27th today. Onc won't prescribe a new regime until the results of the biopsies are back and I am leaving for Italy on the 23rd of December. If it is specialty pharmacy stuff we go with, like abemaciclib, there are approvals, the prescription, the delivery. I wasn't sure I would get the stuff before I leave. Odds slightly higher now. The 22nd is the day before thanksgiving so I'm going to be on the bench as far as thanksgiving cooking goes.
>Z<
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Z, the place where you have your MRI done will provide either ear plugs or headphones. If you get headphones they will ask you what type music you like and will play it. They will make sure your ears are protected. Good luck on your biopsy. Have fun in Italy. Don't know how long your specialty pharmacy takes but mine took 4 weeks for me to get the Ibrance, totally ridiculous. Hope yours is faster. Thinking and praying for you.
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