How are people with liver mets doing?
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how are you doing Ellamilana?
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Just received the PET scan results. From what I've understood reading the report, there's nothing new. It only talks about the three mets in liver we already knew about, so I hope that mum can go on with Kadcyla whitout starting chemo again.
However well'have to wait to talk with doc in order to know what's next. I'm just a little bit concerned about the SUV... It's 5.7. Is it considered high?
I hope that everyoneis doing fine.
Prayers to you all
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I have been feeling pretty lousy lately so my MO had a repeat PET/CT. Liver and bone mets looked either the stable or slightly improved. The biggest problem was ascites. I am feeling bloated and I've been having lots of nausea, no appetite, some abdominal pain, etc. Kind of normal liver mets symptoms for me. My MO suggested that I have ultrasound guided fluid removal with an interventional radiologist, thinking if they can remove even 500 - 1,000 cc I will feel much better. I've read a lot about fine needle aspiration or paracentesis but it everything I've seen is when there is a large fluid build up and several liters are removed, not as little as my MO thinks they may be able to remove. Has anyone been through this procedure with such a small amount of fluid removal?
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Worried Daughter - I'm not sure about the SVU value range. I just know that I'm always happy when mine is lower than on the last scan. For example my liver mets went down from 11 - 13 to a maximum SVU of 8.4 so that is good news to me. Hope your Mum does well.
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What is the SUV? Is this something I could find on my blood chemistry panel or is it taken separately?
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Dear Sarah, thank you for your answer. I'm sorry that you are dealing with these symptoms and I hope that you'll soon get better. Unfortunately I have no information about the procedure you talk about, but maybe there is somoeone else on this board that can help you.
Dear Sandilee, SUV stands for standard uptake value and it's a value you get when you have a PET scan. It should indicate metabolic activity of the mets, though I have no idea about the values (what is considered high? and what is low?).
Prayers for you all.
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Thank you. I haven't had a PET, so now I know why it wasn't familiar.
I'm on my second cycle of Xeloda, hoping for results after four.
Best wishes to all.
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Ug, hate to report negative news. Feel free to skip this if you're looking for pick-me-ups.
TLDR: dx stage IV from the start 18 months ago - had a phenomenal response to treatment - NED on H/P for 12 months. Just dx'd with brain mets.
About me: I was diagnosed stage IV from the start 1/2014 -- her2+, a few small mets to liver. Taxotere, herceptin & perjeta did it's trick and got me to no evidence of disease - some called it PCR, complete radiographic response, and more - PET, MRI (liver & brain) showed up absolutely clean, and it was fabulous. I've been on just h/p since August 2014.
Last month, "new" vision issues appeared. I'd had bouts of blurry vision for awhile but after clean brain MRIs, they attributed it to drug SEs. Recently, very sporadically, wherever I was trying to focus my sight would become completely blurry. For example, when looking at the face of my watch - I could see everything but the details on the face. This would last 5-15 minutes and then pass. Very bizarre, no rhyme or reason. MO said she'd never heard of anything like that but wanted brain MRI to be sure nothing was missed. We were all confident it would be negative & I had an appointment set to see the ophthalmologist.
No such luck - MRI last Wednesday found 2 small brain metastases. It's unbelievably disappointing and frustrating, but seems the best thing we can do is listen to, and be aware of, ourselves. "Funny" part: while it is possible, neuro-docs really don't 'feel' the mets are causing the bizarre vision issue. We'll see.
I had gamma knife this morning, will repeat PET to check for additional progression, and see MO to find out about next steps. We are not considering this a failure of herceptin/perjeta - just lousy luck - so I'm not anticipating any change in drug therapy. Still kinda foot-dragging on researching this new world of crap but am curious about any possible 'preventative' measures.
Meanwhile, I'm still following an 'anti-cancer' lifestyle and incorporate integrative/complementary therapies - strict diet, mindbody and stress reduction daily practices, positivity exercises, lots of physical exercise, tons of supplements (I also see an integrative MO), acupuncture, etc. etc. - basically, the kitchen sink. Just shows how much of a crapshoot this is.
Ug. Got the brain mets news on our 3rd wedding anniversary - managed to still enjoy a fabulous celebration; so proud of dh & myself for putting the right things first. Haven't had a chance for the pity party yet - trying to keep up appearances for dh & rest of the family. I'm so incredibly heartbroken and don't see how sharing that with them would help anything.
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spicy--so sorry for brain mets news. I hate this for you and your family. Hoping gamma knife goes well. Words are escaping me. Just very sorry for your news. Please keep us in the loop. You can be heartbroken in front of us
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spicy- I hope gamma knife took care of it. I was on Tykerb for a while instead of herceptin, as it goes across the blood brain barrier. Kept me stable in the head for over 2 years. Its a no oral pill so nice and convienent.
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oh no, more bad news. Had my first CT scan after just three treatments of Abraxane. The chemo has not worked at all (except to give me neuropathy!!), new spots in the liver "too many to count". Was expecting the treatment today but doc is taking a week out to consider new treatment for me or possibility of a trial. So disappointed, everything was pointing to the treatment working and they just can't explain to me why this has happened. In effect I've had NO treatment at all and tumours are just continuing to grow. May move on to gemcitabine and carboplatin but at the moment just thinking if Abraxane doesn't work, whose to say anything will? Docs had such high hopes for it. Therefore so did I. Continue to feel well physically but very down in my head. Need some words of wisdom/encouragement from you lovely ladies please
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I'm so sorry. I wonder if some kind of hormonal therapy, like a Faslodex/Ibrance combo might be something to try since you are er+. How long is "three treatments" of Aabraxane? Maybe there wasn't enough time to see real results.
I'm sure your doc will come up with something, as you have just begun the stage IV dance. Don't lose hope. There are a lot of drugs out there, and something should work.
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Isy,
I am sorry Abraxane didn't work , i know itis very frustrating. But this is stage IV . It is always up or down . There are still many chemos you have not tried . I would not choose Gemzar and Carboplatin at this stage , if i were you i would suggest Taxol or any taxotere. They are rough chemo but work well on reducing tumors. I have had Gemzar and carboplatin it was very tough on my blood and platelet but not on the tumor . It reduced it by 20% and they had to stop it after 6 cycles because it became toxic for my blood. After three month on AI my tumors doubled.suggest weekly taxol or any taxotere. Don't panic there are still few options for you and one of them will work. God bless you and gives you strength.
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Sandilee and Woody, thanks so much for your replies. Should update my profile, my liver tumours were biopsied and have changed to more or less triple neg now so no hormone treatment and I think that's why the gem carbo combo is being mooted as it has proved successful for triple neg. I was having Abraxane every three weeks so basically have had nine weeks with effectively no treatment and now waiting another week. Only consolation is that my bloods are good, kidney function good and liver function "not bad". CA markers had slowly been coming down too. No-one seems to be able to understand why there is still progression but as you say Woody, stage 4 very unpredictable. Hate it!
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Dear all,
I've got a new question since oncs don't agree on what's next. According to PET mum's situation is stable, nothing was signaled except the liver mets (SUV is a little bit high, since it's 5.7, but that's all). According to MRI liver mets are stable, but a couple of lymph in the sternum area are slightly inflammed. They are about 12mm-13mm. Bloodworks are ok (TMs not reliable).
Mum's onc talked with another one from a different hospital and they agreed that, if the PET showed stable, mum had to go on with Kadcyla and had to keep the lymphs under control. Though today mum's onc wasn't there and she talked with another one, who said that it would have been better to change therapy and start chemo.
I'm no doctor and I think that high SUV is not good, but, since there is nothing new and the mets are stable why start chemo?
Prayers to you all
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Isy, I'm sorry you had that scary news. A different chemo could work very well. Is it possible for your onc to order chemosensitivity testing for your tumor? I have not had this done, but I have read about it here on the board.
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hi shetlandpony, I will ask about chemo sensitivity test though it seems a lot of centres don't offer it as it's not thought to be too reliable. However it would be nice not to have to go through another 9 weeks of treatment that's doing nothing! See Onc next Friday to find out about next step.
Hugsto all,
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Isy,
I, too, had my liver mets change and became triple negative. I tried Xeloda, but had a rare side effect so had to stop. I then went to Navelbine and after 8 months was found to be NED. Just had scan again last week and still no tumor growth. The onc says it's probably still there, but too small to see. I will take that as long as I can stay chemo free for awhile.
So, don't give up hope...there are many treatments still available and I know you will find one that works for you! Debbie
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Chichi i am doing the happy dance for you ! !
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Hello Ladies,
Isy, I'm sorry to hear that you had such a setback - but I am hoping that knowing now that you are triple negative helps to provide you with a treatment that knocks the stuffings out of the tumors!
Spiceypetunia - I'm sorry to hear about the brain mets. My advice? Don't confuse a pity party with support. News like that is like a punch to the gut - just knocks you back. I completely understand the brave face, and the soldiering on attitude, but sometimes you just need to stop, breathe, and accept support, love, hugs, and care, (and cookies!). Sometimes strength comes from others, and gives you fighting spirit.
RonnieKay, and and Debbie/Chichimaine - wow! That's amazing. So glad to hear you both had such success with Navelbine!
I really hope that Navelbine does the same for me. My doctor agreed (though I haven't seen her again yet!), and I am three weeks on, one week off. I am currently going into week three. When I see her next, I am going to push for a biopsy - my spidey sense tells me that the cancer beast that lives within my liver has changed its spots.
I am just taking it in baby steps. Not beating myself up for being tired - thinking positively that my tumor load will decrease, decrease, decrease...
Sending you all healing light, and prayers.
Jane
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Janey...I like your attitude :-)
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Thanks RonnieKay!
Right back at ya!I'd like to think I'm like those Bozo the Clown toys that when you punch them - they pop back up haha. Though - I don't pop up quite as fast now, more like in slow motion. I just wish I'd stop being punched - like this week when my WBC was too low to get my third round of Navelbine for my first cycle. Hopefully it will be back up soon.
Has anyone else had issues with their WBC? This is, believe it or not after all the chemo I've had, the first time my WBC was too low.
Healing light, and prayers!
Jane
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So I need to rap myself on the knuckles and tell myself to stop being such a wimp. Have just spent the last few days reading this thread from the start and some of what you ladies have been through (and still going through) with such hope, faith,humility and humour is awe inspiring. There was I feeling ready to give up after the first chemo failed makes me feel quite pathetic!! Reading about your journeys and having a good long talk with my onc has given me renewed vigour and hope. He told me he is in it for the long haul with me. He said that in his experience it is often the third chemo that is found to be the magic potion and basically told me to hang in there. He goes more on clinical presentation rather than CT scans and simply can't reconcile the fact that I look and feel so good, bloods are all good and yet the scan looked disastrous. So we have scheduled a PET scan for next week to get a better idea of the activity in there and in the meantime have started with the gemcarbo combo two weeks on one week off. Feeling great today as steroids kicking in. Chemo nurse told me to get plenty of iron in my diet to fight off anaemia so stocked up with Guinness, spinach and liver!
Thanks to all you lovely ladies and here's to supporting each other for years to come!
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Janey,
I had the same issues with the 3 weeks on and one off. I made it through three cycles of that regimen and then had to go to two on and two off. At one point I also had to take a month break from the Navelbine because I was getting too weak. The Navelbine continued to work even with being off a month...still continued shrinking the tumors. Hang in there...it is worth it!!!
Debbie
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Isy,
Glad you had that talk with your onc. It's so easy to feel like giving up...that's why this group of wonderful ladies have been so important to me. They are always here to listen and give advice and they let you know that you are not alone in this battle. Believe me, we have all had and continue to have our "wimp" days and worse! I'm happy that you have a plan now...that also helps alot. Thinking of you and all these other lovely ladies.
Debbie
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Isy,
We all have our "wimp" moments but they pass as our love for life is stronger. I want to wish you good healing on this combo, lots of prayers , and faith.
I had the same combo upon my reoccurence, it is a fairly acceptable combo as far as nausea and ill feeling is concerned. But please be aware carboplatin is rough on the blood, both red and white blood cells as well as gemzar . Also the blood platelets are badly hit.
Even though your nurse vonlonteered the info of iron. My onc told me the anemia has nothning to do with iron deficiency ,mit is strictly the side effect of carbo. Eating iron rich food in not bad , but the combo disrupts our bowels enough without adding the iron lollll. What i advise to do is to know your own body . If after the second cycle extreme fatigue kicks in then call your onc immdediatelt and run a blodd test . Also you have to be careful not to bump ypurself fall or cause any hematoma on your body and of you do , you watch if in half an hour it becomes doblue the size you do not call you rush to the hopsoital . Another symptom of low platelets i itchin very badly then you may see red spot where you itched looking like pins and needles also you rush to the hostpial.
This heppend to me starting after the second cycle continuing on to the third and so forth. I had to have a blood tranfusion, neupogrpen and cancel a dose and the last two cycles i got them on reduced dose.
You do not lose all your hair not from gemzar but carbo.
I got 20% rediction on the main tumor , amd small ones bcamce nearly visible and lower activity..so i switched to examestane which falied me after three months and i got s progression.
All this sais hehehehe not to scare it really is not bad and if your blood is strong you may not be so hardly hit. But if you get hit do not painc there is awlays a soluton. I hope it gets some reductiob and stable. Stable is not bad he is nice guybut his cousin NED lollll ot a much educated guy. I hope you get a long visit from eother of them . Keep up the fight we are here all for you. Gentle hug
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Chichi , lolll you're a tough cookie God bless youi hope you stay NED and keep kicking a**.
Go girl ! And don't Let anything or anyone stops you.👍🏼👍🏼👍🏼🙏🙏🎉🎉🎉
Kisses
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Hello, I am joining your group. My hx- dx'd stage ll B 2/11 triple+ IDC. Difficult tx with massive SE's, allergies, etc. Fast forward to August this year, found a new lump in other breast didn't think much of it (appeared quickly, moveable, not painful) but Mo wanted an ultrasound asap. BIRADS 5. I had also had been having some mild abd. discomfort to the right upper quadrant, and eating has become difficult, but never made a connection. Did the lab work for upcoming MO appt. and liver enzymes 4-5X normal. I can palpate the border of my liver well below my rib cage and it did not feel right. As my MO was on vacation for 2 weeks, went to see my PCP and she ordered a stat CT. CT showed large area of mets, diffuse, covering lower R lobe and extension to L lobe with portal involvement. While in hosp (allergic reaction to contrast) they did the biopsy of both liver and breast and put in a port. MO said she wants to start Kadcyla and Herceptin this coming week.
Is this familiar to anyone? How are you doing? What has treatment been like? Should I hope for anything? I will be doing a PET this week also. Any suggestions would be much appreciated.
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hi Woody, thanks for your words of wisdom as usual. Will keep a close watch on things like you say. Your post full of typos, not like you at all. Wondered what you were doing when you wrote it lol! Really enjoyed the Guinness though. First drink for three months.
Welcome to this thread Moni. I'm also quite new to this lark so can't offer any advice on the treatment you're getting but there will be others on here soon enough who are full of knowledge and wisdom. So what's the translation of your Latin quotation?
Can anyone enlighten me on what is likely to show up on PET scan I'm having this week, as opposed to the CT Ihad recently? Nerves are starting to build up again.
Have a good week everyone. My sis is staying with me from England and it's been great doing loads of catching up and just chilling. Luckily I've been feeling good and we've managed to get some good days out.
Xx
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Isy- the quotation is loosely "not all that terrifies is harmful". I read it as sometimes we should fear the unseen more. How prophetic.
The PET will show bone and soft tissue from "mandible to mid thigh" whereas CT is more defined to soft tissue and usually a relatively small area. Good luck. Doing one on Wednesday.
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