How are people with liver mets doing?
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thanks Moth
. The situation with my mother is resolved now..but literally the last 2 weeks EVERY SINGLE DAY was STRESS..... 0 -
Nicole - thoughts are with you and hoping the skin conditions are not associated with cancer or its treatments.
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BevJen - what a bummer you have to have the second ablation on the same tumor. I agree, it's admirable that your IR owned the mistake.
Grannax - in your pocket for your MW on Wednesday and praying for no post ablation syndrome. Let's just decide that's a left lobe thing and your body will just go along.
I'm sooo excited for you and your upcoming family weekend! Nicole - I'm sorry you're having this worry today, and that you're having so much stress in you family due to your mother's condition. I hope there's a different, easier, explanation for the skin condition.
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Nicole, I pray that the only common factor in having those 'bites', is stress - physical and mental. Let's pray that the physical is getting under control, but that it is the increased mental stress that is currently aggravating the skin condition.
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Nicolerod..I hear your fright.
I will hope these skin bites are stress related and not indicative of failing treatment.
You have been through so much. I feel in my heart that your tx is still working.
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granna, in your pocket on Wednesday. May your IRs hands be steady and guided by wisdom and may your liver cooperate and heal quickly.
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Grannax – I'll be thinking about you on Wednesday. I hope that your recovery with the deeper tumors is easier!
BevJen – I would feel down too if I had to repeat the microwave ablation. I hope that with the smaller amount of tissue treated, the recovery will be gentler!
Nicolerod – I'll pray that your "bite" is not a sign of progression on Halaven. The ever-present fear of progression is one of the hardest parts of being Stage IV. As for Halaven schedule/dose, I have a friend who experienced significant neuropathy with Halaven. She took a short break and then reduced the dose to 70%, keeping the 2 week on 1 week off schedule. Her neuropathy almost completely resolved and Halaven continues to work for her. If your leg weakness is neuropathy then that's one of the few side effects that would make me consider a reduced dose. Normally, if something is working, then I'm reluctant to make a change… but then my tumor burden is not low…
Hugs and prayers!
Theresa
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Grannax- Pocket duty for Wednesday. Hugs.
Nicole- Praying the "bites" are stress related, and not progression. Hugs.
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Nicole- hugs. I hope like others this is just a physical manifestation of the stress you are under. May your stress go away and eith itvtge bite.
Grannex- will think of you Wednesday.
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LFF, can't remember which thread it was but thank you re offer of hospitality in seattle. I'm not going to pursue tx there now but maybe in future
I hope you're well and your dh is staying sane. My dd is working mostly surgical daycare which is good as all her pts now must have neg test. But she's doing post-bac training for icu/pacu/cardiac icu, and will be finished in May. I hope the covid numbers are lower by then Hugs everyone
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What else can I say except thank you and I love all of you!!! (((((cyber hugs))))) You all totally made me feel better!
Husband11 Thanks for chiming in for me I know you don't frequent the liver thread! lol & hope your wife is still doing good on the meds
Theresa...my MO did ask if I would prefer a dose reduce (not bc of this bite thing, I haven't even mentioned about it and wont unless it continues) but she asked which I would rather 2 week on 2 off or dose reduce...I said 2 week off (just for sake of not having to go an extra week) but are you saying you think reduce dose would be better? I am thinking it works out to be the same? Am I wrong? hrmmm??
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Nicole,
I hope your skin condition is not related to progression I have had psoriasis for 50 years and I know that there are many triggers, one of which is stress. I have also had issues with the premed steroids. I have had a horrible flare after they reduced the dosage.
Denise
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Thanks, SeeQ, moth, Candy, Lff,, Theresa. I'm happy you'll all be in my pocket on Wednesday. Have a party while you're in there. Somebody be sure and drink a margarita for me, it's the only drink I like.
I like the idea of my IR s hands being guided. I'm going to focus on that.
I got all my Christmas gifts wrapped today. Maybe tomorrow I will get my tree up. I love Christmas time.💞
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Grannax, I will be thinking of you on Wednesday. I hope everything goes smoothly and your recovery is rapid and easy. I look forward to hearing all about your celebratory weekend. I recall the stories you posted in the past about your family. They always put a smile on my face. With COVID in the mix, I assume your grandchildren’s activities have been somewhat limited. It is wonderful that everyone is being tested and staying home to prepare for the family get-together. I know you are looking forward to the weekend, but please listen to your body, and don’t overdo it.
BevJen, I am glad your IR is redoing the ablation. It is unfortunate that it wasn’t done correctly (or completely) the first time. I am sure the IR will be doubly focused this time.
Nicole, Let us know if you have any updates on the bites. I, too, hope that it is from stress.
Denise, Have you been to Dana Farber yet? I live in the southern part of NH, just outside Manchester. I am not aware of support groups for mbc patients in NH. I haven’t seen any included in the hospitals’ listings. I will ask my MO when I see him next week. How are your treatments going? I see Taxol listed in your profile. Is that what you are on? Are you having any SEs?
Hugs and prayers, Lynne0 -
Nicolerod
Prayers 🙏🏻🙏🏻🙏🏻🙏🏻
Try not to let your thoughts get loose. Can you call your doctor and let him know your concerns and get some reassurance?
Hoping it is just stress and nothing more.Dee
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Nicolerod - I think that you're correct in that you would get a similar overall dose of Halaven with either approach. I calculated that over a 12 week period, you would get just a slightly smaller total dose (6.67% less) of Halaven with a 2 week on 2 week off schedule at a 100% dose than with a 2 week on 1 week off schedule at a 70% dose. I would ask your oncologist whether there is any evidence that one approach is better than the other. I offered my friend's Halaven experience because it's what her oncologist thought was best and it stopped her neuropathy. In the prescribing information for Halaven it says "If you develop severe neuropathy, treatment with HALAVEN should be delayed until the neuropathy improves and the next dose of HALAVEN should be reduced." It did not mention adjusting the schedule, but they may not have tried different schedules. I can definitely understand wanting to go to the infusion center less often, especially with the surge in COVID19 cases. Best wishes with your decision!
Grannax - I'm glad that you have an early Christmas celebration with your beautiful grandchildren to look forward too! It's touching that they are all going to so much trouble to keep you safe.
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Nicole: Hoping that you find out that your "bites" are just a sign of stress and that you can get some relief from that. I understand the fear of going through treatments that don't work. I've been on Xeloda just over a month and dread my scan and TM blood work next month.
I start 2 1/2 weeks of radiation tommorrow morning for a progressing primary breast tumor. Haven't had radiation yet so am very nervous. My MO will let me know tommorrow if I can continue with Xeloda during radiation.
Warm thoughts to all of you.
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Dear all, uhh, so much has happened here over the weekend...
Nicole, I think "bites" are connected with stress and lowered immune system. I believe the "bites" would be treated to some topical-steroids-antibiotics, like Fucidin. I am not saying you should use them but this would simply show you it has nothing to do with progression. Skin is always very sensitive to immune suppression, and the stress you had over recent weeks could have done it. Also, please do not stress yourself over sugar, as anything what we eat is finally partly converted to "sugar" to give your cells energy, and I have not seen any definitive studies that would show BC-sugar correlation.
Grannax, I want to second Shetland about GATA3: For my wife they did it to confirm that mets in liver were BC related, and not some other cancer. Basically... it would be nice to have some MAB for this mutation as it is quite common in BC, just I don't know about its expression on cells' surface. Strange it is so common but no drugs are developed for it - might be this mutation is not expressed? We will hold our fist for you on Wednesday!
Saulius
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Hi everyone,
I skimmed through some old posts but didn’t have a chance to read all the posts in depth. It has been a while since I have logged in. Thinking of you who are going through challenges and happy to hear a few of you have had some good news recently.I wanted to post an update on how I have been doing. Things seem to be improving for me, although it has been 2 steps forward, one step back at times. I have had 3 cycles of Enhertu and my bilirubin dropped from 4 to normal, my alkaline phosphatase drops at least 100 points per week and is now in 600s, down from 1300s. Liver enzymes have also decreased and tumor markers are going down. Enhertu has been a bit harsh, although getting better as my body improves. I think it hits me more because of the state I am in. Praying that my ascites goes away at some point. The hepatologist thinks it will resolve over time as the portal vein thrombosis works itself out from the blood thinners.
I have been having weekly paracenteses for 8-9 weeks now. They have taken out 2.1 - 5.7 L each week. Usually, that depends on the placement of the the needle and/or the skill of the tech doing the paracentesis. The IR or a nurse practitioner does the needle placement but then a tech does the draining. There have been times when they took out 0.4 of a L and told me there was no more left or another time 2L. After I cried out of frustration, knowing I had tons more fluid in my huge pregnant looking belly and pushed them the try to get out more, they would end up taking out another 3+ L. So inconsistent. The only person who always does a good job is the head tech in charge of everyone and she isn’t always there at the same time as me. She is amazing. I have also been taking diuretics inconsistently which help a bit with the ascites when I can take them but was having issues with low sodium levels on them. My sodium levels are now back up and I have been able to increase the diuretic dose which helps keep the ascites down to a bit.
I have developed a pleural effusion in one lung from a combination of the ascites and reaction to Enhertu which has made the last few weeks tough with breathing. So strange, I don't have lung mets and didn't know one can develop a pleural effusion without lung mets. I was worried I had ILD/pneumonitis from Enhertu which could require permanent discontinuation of the drug. I was relieved to find out I don't have that. My breathing has improved as I recover from this chemo cycle but my liver swells each chemo cycle 5 days after treatment (Enhertu is no joke on liver mets - super powerful) and the pleural effusion gets worse at that time too. Feeling a bit nervous about the next cycle and what will happen.
However, I am thankful this treatment appears to be working and I have regained a robust appetite. With the ascites, I don’t know how I manage to fit the food and drink in my body but glad I do have an appetite and trying to eat as much protein and other nutrients as possible to regenerate my liver after what seems to be a major influx of dying mets from Enhertu. I lost a lot of weight rapidly when I first started Enhertu and would also like to rebuild some muscle on my body.
Hope everyone had a nice Thanksgiving. Thinking of all of you.0 -
JFL- wow, you have been through a lot. Hugs to you. I am glad you are resolved with the issues from your treatment but sad that you have to deal with them. Your strength snd outlook are something to be admired. it is amazing what one will live with if it means treatment is working on the cancer.,
min my thiught0 -
JFL. Thanks for the update, I think about you all the time. Oh how I wish the ascites would completely go away but if it's from dying mets I guess it's a double edged sword. I'm sure
I should know the answer to my next question but I can't remember. Do you have a certain mutation that led your MO to put you on Enhertu?
When did you have your most recent scan showing that TX is working?
Not being able to breathe well plus the discomfort of ascites sounds miserable. I'm praying that you get the good nurse EVERY time from now on.
Keep up the good fight.💞
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JFL, wow.
You are always on my mind. You can't spend 4 years on the mets board and not get to know our peers.
I am taking notes on Enhertu. We both have that FGFR 1 amp mutation and my 2016 bx said I was IHC 1+ for HER2. Was that the deciding factor for you?
Glad you are improving. Your liver is amazing..keeps getting beat up, but keeps healing.
Hope you still have help with your household stuff and can give lots of hugs and kisses to your young son.
S
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I get full of hope and compassion reading the reports from everyone. Hoping that any issues are resolved and Prayers for good scans/procedures.
This is a big week for me. I have a lumbar injection today to help with the flank pain. Wednesday is Scans and results for the CDK 2/4/6 trial.
I was feeling really good about the trial from my labs. my CA 15-3 keeps going down even in the normal range, last one was 15. My liver enzymes are almost normal. ANC has stayed in the normal range. Other labs are okI asked my MO to do a Chromagranin testfor the Neuroendocrine hoping to see improvement there. It just came back above 3000😳 it was 1100 in Sept. normal high is 140. So I am trying to stay optimistic. 😢
So grateful I had my kids for Thanksgiving. I know it was not advised. we had 10 people from 4 households. Everyone wore masks inside the whole weekend, switched to Shields and drank through a straw, used serving gloves to portion out buffet style. My house is big enough to social distance while sitting. The weather allowed our big meal to be outside which we catered to make it easier. I know we took a risk but I think we all needed to be together. We were all supposed to be at Disneyworld for the Holiday ( mom & dad’s treat) but that got cancelled for at least 2 years due to covid and traveling etc.
I will report Wednesday about the trial. Dee
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50's and Theresa, yes I'm still in awe that my family is doing all this for me. It really touched my heart.
My granddaughter and I plan to watch the new version of Black Beauty together. It's on Disney Plus. I'm looking forward to that. I used to have horses and passed that love of horses down to Aubrie. She's baking a Christmas themed cake for my birthday, chocolate, of course. She and her mom have just started a business called the Speckled Spoon. They love to bake together.
Blake is nine and likes every sport there is. He loves to play corn hole. I doubt I'll be up for that three days after MW A. Maybe we can play Monopoly. His Aunt Tami will play more active games with him.
I got matching Christmas jammies for them, as usual, they always love them. I'm sure I'll have more stories to tell on Monday. 💞
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Dee, sounds like a wonderful, much needed TG gathering. The shields were a good idea. I hope things go well for you this week, it sounds busy.💞
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JFL, my wife couldn't get proper and consistent drainage until she had a line installed so we could do it at home. Her treatment consisted of two different diuretics, and injections of an anticoagulant. Eventually her ascites went away, and she had the drain removed. She still gets a little ascites from time to time as seen on her MRI.
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JFL...just prayed for you for the Ascites to clear up. So glad you checked in! You said your liver swells 5 days after treatment is that from die off? Sure sounds like it...and WOW that is amazing that is working so good I am so happy for you...I am a sure tracker of Bilirubin...mine was in the 2's and as high as 3.4 all until I got on this Halaven...today... 0.7!!! You are my "goal" keep on pushing through lady!!!!
Ladies & Saulius and Husband11. First let me say I didn't get any more "bites" after that...just that one and its gone already
I cannot thank you all enough for your support...I really mean it...I felt SOOO much better and not as scared to know you were all here "WITH ME"..its so strange how just having that support on a computer from you all can literally make a person feel sooo much better, stronger. I literally thanked God for you all!!Saulius....ok so I have had my "bites" tested 6 -8 samples taken they never came up with anything and also NONE of the topical creams work I even had a steroid cream so strong that you have to wean off it... Yea...I guess thats one of the other signs that led the dermatologist in NY to know they are caused by my cancer. I have a question for you though..... you mentioned stress coupled with low immunity could be the cause... my white blood count and neutrophils are great all normal...so wouldn't that mean my immunity is fine?
I am soooooo happy my bilirubin was 0.7 today and ALT AST 19!!!! Alk Phos 96.
Dee... I am so happy you had your family for the holiday thats awesome. What is a Chromogranin test??
GRANNAX...ref: Enhurtu...I believe that you have to have some level of HER2+ in order to get Enhurtu. **ladies please let me know if I am wrong about that.
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JFL- I admire you.
AlabamaDee- In your pocket for Wednesday.
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Nicolerod Chromogranin A (CgA) is a protein commonly secreted by neuroendocrine tumor cells. A blood test measures CgA as a "general" tumor marker For Neuroendocrine cancers. Lots of things can affect its accuracy. I did not fast and I am on a PPI( proton pump inhibitor) both could have contributed to the high number. But probably not that much of a rise.
Thanks for the well wishes everyone. The epidural was uncomfortable but fast. Hoping I get relief.
Dee
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JFL - So happy to hear you are seeing progress with Enhertu. Thanks for taking time to share your update with all you have going on. Best wishes.
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