How are people with liver mets doing?
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another loss too early. Thank you for letting us know.
Extra hugs for everyone tonight.
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Lindalou: thanks for letting us know about Keetmom. Very sad. I am trying not to get discouraged by all the "passages" lately. Sometimes it seems hard to strike a balance between staying optimistic and feeling the need to prepare friends and family (and also oneself) for... unfortunate possibilities - the timing of them anyway. Maybe ignorance is bliss. I keep going back to something my doctor said to me once "let's not worry until we know we have something to worry about." I already knew we had something to worry about but, as a tactic, the approach seemed sensible. Worry another day, not today. So I adopted it. I also remember a patient at the obstetrical office where I used to work. A screen came back showing her being at elevated risk for a baby with down syndrome. This totally freaked most of our patients out. She said... "eh... it'll work out..." I SO admired her level-headedness and resolved to emulate her. I still think it is a worthwhile, if challenging, aspiration. Thanks for indulging my waxing philosophical....
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Another loss. It does get harder and harder to stay positive !
I hate BC
Babs
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I agree, babs. I have my PET on Monday. Hoping and praying for more response from Ibrance, scared to death of progression. Such mixed feelings inside me. I want to be positive and optimistic but the doubt creeps in. Most of all, praying that nothing will keep me from going on my two trips I have planned for September.
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keeping all of us in my thoughts. Good luck to all going for scans and treatments. I have a Zometa next wednesday. They are starting to hurt anyone have that issue when they get the Zometa. Bone pain after for a couple days? I am otherwise pain free.
But must say these last 3 months have been hell when I officially joined the stage 4 club. I had a really bad constatapation issue after last treatment on wednesday. Had to use all kinds of help. What a nightmare.
Hugs and warm thoughts,
Raven
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With a sad, sad heart, this is to let you know that LALady1 lost her battle with cancer and passed away on August 15, 20180
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I had my PET today and I don't have a good feeling about it. Just intuition and I hope so much that I'm wrong. I won't get my results until Friday. It's gonna be a long four days.
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Grannax....every time I go in feeling terrific and positive they find progression, and when I fear the worst...NOTHING! I hope it's the same for you....just nerves and natural distress associated with these procedures!
These past few months on xeloda, I been feeling so good, it's as if I am no longer sick. I have plenty of positive mental and physical energy and no SE other than high liver AST And ALT which I hope to have taken care of with NAC during my week off, PET in a month will tell the truth and I won't deny that I fear the worst, so unpredictable is this disease.....
I wish you good luck, keep us posted!
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Grannax, that is a long wait and gives you way too much time to build up suspense! Stay busy and I'll be thinking of you and sending positive vibes and gentle Gulf breezes up your way!
Peace,
Katty
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During the night, while I was supposed to be sleeping, I think I figured out why the techs were all so serious. One was irritated with the other one who didn't notice the tiny tabs of metal that were on my capris. They showed up on the scan. Main tech not happy. So, the third one was irritated with the main one because he didn't notice that I had a fall in June. I hurt my ribs and that might have shown up on the scan. I've decided to hope that I might be NEAD this time! I know, one extreme to the other. Actually, I'll be happy with stable.
My goal is to go on my vacations in September without having to change treatment. I will try to occupy my overactive brain with plans for my trips while I wait for results. One of them is next week.
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Love seeing your beautiful photo(s)!
Sorry to chime in here, but we are looking for stories from people participating in a clinical trial for metastatic breast cancer to help us write up a blog piece for others considering this. e.g. Was your experience a positive or negative one? Tell us what you wish others knew about participating in a clinical trial.
Also, we're looking for any "tips" you may have for caregivers, also for a blog piece.
No pressure, but if you would feel comfortable sharing, can you share it here or send us a PM?
Thank you!
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So, CT scan did show liver responding nicely to treatment, one met remains and it is smaller, the place on breast/axillary where it recurred showed skin/soft tissue/musculature thickening....they aren't sure what to make of that. No new active disease shown.
I did receive the pembro and eribulin last week, same flu like symptoms on day #3-4...low grade fever, aches, headache, NO energy. Oh, and my thyroid is now no longer working. I started having issues with it acting up just before I started this trial, so, I'm not sure it's to blame. Started on synthroid....hope it kicks in soon.
Was scheduled to receive Eribulin today, but had to have it held due to increase in neuropathy in fingers. I hate to hold it, but I couldn't open the Advil bottle, typing is getting difficult and I am fumble fingers. It tingles, is more intense now instead of numbness.....I don't want it to get worse.
Will cross post...0 -
Grannax2, I understand the anxiety..we all do. I will be with you in spirit as you receive your results. Do you feel bad to suspect progression? Have I missed a post?
Part of me is thankful that my MO does not order PET scans. She told me that the results can provide more questions than answers..guessing because the scan can pick up inflammation, so false positives.
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Then again, if you have lobular mets as I do, sometimes you feel like the PET is the only scan you can trust. My lobular mets do not always read clearly on a CT scan (and fwiw 11 years ago they did not show up on mammography either, meaning NOT AT ALL).
My last six CTs have all showed stable disease, but lately my gut was telling me I had progression in my bones that the CTs were not seeing. Earlier this month, I begged my way to a PET (my terrible insurance only wants to pay for CT) which confirmed this week that I do indeed have widespread bone progression, lots of old mets firing up again and many new ones formingas well.
My radiologist usually notes when something is likely to be “inflammatory process” and not active disease. I think there must be a way to tell the difference but I’m not sure.
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Thanks Lulubee for good info. Maybe I should request a PET for a baseline. I think Medicare pays for one initially.
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Lulubee, in regards to "My radiologist usually notes when something is likely to be "inflammatory process" and not active disease. I think there must be a way to tell the difference but I'm not sure."
I asked my radiologist about this, too, because I have sciatica and I was curious if it would show up as something active. He said they tell the difference between inflammation and active cancer by differences in the rate of uptake. How finely tuned this distinction is- or whether it depends on who's reading the results - I have no idea.
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Hi Lulubee.
I don't want to intrude on the liver mets thread - at this point the involvement of my liver is questionable, seems to be the capsule of the liver - but your post prompted a question. What type of bone mets do you have? Are they sclerotic or lytic?
The reason I ask is that, for whatever reason, my cancer is behaving very much like ILC despite the fact that I was originally diagnosed as IDC. I was originally diagnosed due to a right pleural effusion which has since progressed to include thickening of the peritoneum include suspected capsular disease as I mentioned above. Like you, CT and bone scans don't appear to be that helpful. I wondered if a PET would be more effective (although that is likely not an option at the moment as the only PET scanners in British Columbia are in Vancouver and apparently the wait list is approximately six months - we will be getting one in Victoria some time next year though). I'm more interested from the perspective of being educated as currently my MO and I are going with "stable" but I am curious. My cancer is slow growing so perhaps wouldn't show up well with a PET either.
Just thinking ahead...
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Sandibeach. No I don't have new pain anywhere and I was not very worried about progression until the techs had such a surprisingly serious attitude. No smiles, as usual. I've known these techs for many years. Everything they said and didn't say seemed like they saw something that worried them. That was my initial reaction.
Now I'm trying to interpret their non verbal communication in a different way. Friday cannot come soon enough.
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Sadiesservant, as it’s been explained to me, lytic lesions are active cancer, while sclerotic lesions are those that have healed or are trying to heal and rebuild bone. At times my scan reports have noted lytic lesions. Then when my tumor markers were normal again and I got back to NEAD, sometimes my scan reports noted that lesions appeared sclerotic. So I guess a bone lesion can go back and forth.
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Lulubee, that’s not what I have been advised. Lytic eats into the bone but sclerotic adds layers. But both are cancerous growths. The challenge is that it is difficult to tell the difference between bone healing and sclerotic mets with a CT scan. And because my cancer is slow growing, likely limiting uptake of the radioactive marker, bone scans underestimate the burden of disease. This may mean PET scans are also not much help but that isn’t clear to me as I haven’t had this as an option.
As I said, more curious than anything. I’ll chat about scans with my MO when I see him near the end of September. Until then, either all is well or floating down the Nile. Either works for me.
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Hi girls,
Just had blood work done and I have severe neutropenia or my WBC count is 0.8 neutrophils 0.2. I am flipping out. I was put on the Zarxio shots one a day for 5 days. It is a Filgrastim to help stimulate production on WBC until monday I am basically on house arrest. My son has a cold and sore throat. I am terrified. I have only had 2 rounds of 6 of this and am not comfortable with this drop. I don´t see my onc until sept. 13, she will then deceide what to do. If I should do round 3 or change.
Anyone else have this issue?
Raven
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Raven, I just read this on the Xeloda thread. This excerpt is part of a post from Miaomix. It wouldn't hurt to try ☺
"To get your immune system working again, to bring those elusive WBC levels up is important to eat tryptophan rich foods which the body uses to make melatonin.
Tryptophan is an essential amino acid and one of the precursors to melatoninproduction. Increasing your intake of tryptophan-rich foods may boost melatonin levels. Some of the foods with the highest amount of tryptophan are spirulina, cottage cheese, chicken liver, pumpkin seeds, turkey, chicken watermelon seeds, almonds, peanuts, and yogurt. Garbanzo beans, however, win the tryptophan prize. They are loaded with free tryptophan (meaning it is not attached to a protein like in other foods) making the uptake of this source of tryptophan the best, and who doesn't love some chickpeas in a spicy tomato sauce with some chunks of chicken and green veggies?"
Edited to add link to the topic containing the post I quoted:
https://community.breastcancer.org/forum/8/topics/772113?page=303#idx_9076
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Raven, When I was on Abraxane my ANC got very low several times (0.6 and 0.7) and WBC's 1.7 and 2 .....they held the next dose, and sometimes gave me neulasta. My kids had the flu several times during this time period. I wouldn't allow them into the kitchen and was very strict with handwashing, was very fussy if it was the kid sitting next to me at the table (strict is a nice way to put it). BUT I didn't get sick. I think you have to be careful....
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Thank you so much for writng me back Muddling through and KPW3. It helps so much. Everyone here washes hands and uses hand alcohol. Son is in another room. He is going to be 11 so I am not holding him. He is in school during day. He has no fever just cold and mild sore throat. Normally I won´t even worry.
But I have another shot of the filgrastim tomorrow then blood work on friday to see if I am getting up in numbers. But this is terrifying along with everything else. Last time 2 shots put me at 26,000 in wbc and 16.5 in ANC. way too high. But it lowers again daily and hopefully I will rise in the next 2 weeks. Not sure if this is the low or if it will go lower??
Hugs and love to all,
Raven
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Sadiesservant, you are probably thinking of lytic vs blastic mets. Those are the two kinds
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Raven
Last winter my ANC dropped to .6. I take Nuelasta shots after each cycle of chemo now and that keeps my ANC level up for chemo treatment. I have received about 11 Neulasta shots since I have been on carbo/gemzar for 11 months. Really no side effects for me. I use the ONPRO device so I don't have to go back to the infusion unit to get the injection. Works great.
Tricia
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So my tumor marker (CA 27.29) this week is down to 52.7. Lowest it has been since July 2017 when it was 3585 when my liver mets were first dx. Praising the Lord this morning for the results. It is our 32nd wedding anniversary today so was a great gift today. Praying the carbo/gemzar continues to work for a long period of time. I know 11 months on this same drug regimen has been a miracle in it self.
Prayers and Hugs to all.
Tricia
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Grannax: My anxiety level rises every 9 weeks when it is time for my ABD and Pelvic MRI and CT of chest. Just throws me for a loop every time. So far my results have been good.
I am praying and hoping that your results are great. Asking for comfort and peace for you.
Tricia
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Tricia, happy anniversary and it's great to read your low TM numbers!
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Tricia...congratulations on those great results!! You give all of us hope....
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