How are people with liver mets doing?
Comments
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Wow kaayborg, you're the Gem/carbo poster girl. Hope I get to follow you on that particular journey! did you have any issues with blood counts whilst on it? My neutrophils have been borderline last two treatments but the protocol here is just to delay for a few days and so far so good.. X
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Isy
So happy for you !!!!! Dance that happy dance!
Bab
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Isy, I missed the day 8 treatment of my 3rd cycle b/c of low wbc. I have done Neulasta after day 8 on each cycle since. There were plans for Neupogen after day 1s but Neulasta alone has been enough so far. I am usually worried about my platelets b/c they have gone close to the border on day 1 lately and historically have decreased between days 1 and 8 but suddenly, the new thing has been to go up between days 1 and 8. Not sure why, but "Yea, Platelets!" I like to cheer them on, for what it's worth. While I was busy with my platelet pep-talk, my rbc counts decided to take the plunge this last time. I was at the transfusion level but didn't have to have one b/c I didn't have any symptoms. It's hard to say what will happen each time. But, I feel well and so far my tumors stay stupid in finding a way around gem/carbo's punches...thus the love I feel for the toxic combo. Hip, hip!!
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kaayborg,
I was on carbo+gemzar for six months, platelets were a bit of a problem but usually it got resolved very quickly after delaying treatment for one week. I was on neupogen on the second day after each session. So WBC were always ok , however i was not so lucky with RBC they plunged big time and caused me fatigue and shortness of breath and sleeplessness. I had one transfusion since the plunge is not an ordinary anemia, it is not caused for lack of food it is the side effect of carbo. My onc advised immediate transfusion. I am very happy for Isy and you that his combo is working on your cancer and your tolerance for it is good. I was not so lucky , it barely shrank my tumors and it did a big number on my blood so much that the last two doses were reduced and skipped one.
I will continue parying it will keep working for the both of you with the minimum damage. Hourrayyyy for both of you ! I hope it keeps working for a long while and abolishes your tumors.
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Great news Isy! Long may gem/carbo last!
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lovely to be recipient of a happy dance at last so thank you! Interesting to see how we all react so differently to the treatments. When I had my first chemo, Abraxane, was encouraged to read how successful it was for so many ladies on here. Onc told me it was the "gold standard" as well as telling me how expensive it was. He was certain it was going to work and so was I. Well. Not only did I really struggle with it, neuropathy from the word go, baldness, constant fuzzy head, weight loss, it actually grew my tumours. Onc now telling me that particular scan was 'horrendous'. Feeling so much more like myself now, putting on weight, hair growing back and fingers/toe returning to life. Here's hoping our bloods hold out for a good long time kaayborg!!
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lolll Isy , i hope you will always be the recepient of many many happy dances!
It is true each cancer or subcancer reacts differently on different meds and it is never th same on each and every indivudual. But thank God it is so all we would all in a miserable condition . These combos are most golden for cancer but halas they react differently on each and everyone of us, this keeps pharmaceutical searching for different cures. Thank God each one of us found her own golden combo. So i will be doing a lot of happy dances for each everyone on this board.
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So true Woody. We are now trying to figure out my reaction to the Femara/Ibrance combo as my liver enzymes are still rising. She took me off of both for a few weeks to see what happens there. I hope I am not done with this TX already...If so it's on to Falsodex.
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hi liver metsters
Woody is right. You never know how treatment will affect response. I guess that is why those scans are so important.
Reduced dose of gemzar (appears to be working) as TM now 803. Was 1358 in early October. SE are very bad. Incapacitating really. Fever 102 Thanksgiving and fever for 5 days. I get two fever free days a week. Body rash. All from inflammation. Body trashed. Walking when I can. On a bad day I can't go. Boo.
Still believe gemzar working so one more cycle of 3 weeks on 1 week off. December will be another tough month physically. Can't scan until January. We go from there. Reduce dose has helped somewhat. But SE rule right now. Not in a good way.
All I can say is hang in. Even when you don't want to (Had a few " mommy, I don't want to do this anymore.)Lol. I keep track of you all. Good news celebrate. Hard news remember there are options.
Best to all
Diana
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Diana, It makes my heart hurt when I hear of someone like you having such a hard time with SE's. It sucks when we can't do the things we need to do or enjoy doing. I hope the week off will see your SE's lighten up a LOT! I hope you can get out and walk during December even if it is in the mall to look at the decorations and soak up some Holiday spirit. Thank you for reminding us to hang in, I will try harder to not sweat the small stuff..
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I was diagnosed with Stage 4 mets to liver in 2011. Had recurrence Jan of 2013. Been on Kadcyla since March 2013 and cleared up my lesions. Unfortunately I have mets to brain now so working on that at the moment.... Kadcyla saved me when the Herceptin stopped working. Take care and keep us posted!
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Diana, so sorry to hear what you're going through at the moment with SEs but worth hanging in there as it seems to be working. Maybe reduced dose will lessen SEs over time whilst your body adjusts to reduced chemo load. You know how fast Christmas always comes and goes. Hang on in there and it will be January before you know it
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Diana ,
I am so sorry honey for yoru SE's Gemzat sucks this way. However lower doses may improve you endurance. Hang in there just a little bit longer, January is not that far and we go from there. Just know we are with you all the way. Maybe after the scans you will be given a better and more comfortable option in whch you do not have to suffer such horrible side effets. Personally i hated Gemzar as well as carbo. They killed me. I do not know what your doctor told you when you started this tx, but mine told me it will be tough and he also told the maximum amounts of rounds is 8 not more. I barely made it to six , towards the end he wanted it finished before i did lolll. So i feel for you believe me. At least it did bring your tms down so yayyy.
Love , prayers and healing thoughts.
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Artist,
Do not try to guess what is next sweety, take it one step at a time. Wait now to see your body's reaction upon resting a bit from ibrance/femara and if you can continue than great if not faslodex is a good option from what i read here fo some it was a lifesaver. I hope you feel better, and ke keep our spirits up and wait and see.
The holidays are around the corner hopefully we will be able to enjoy them with our loved ones.
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Priscilla,
I am sorry for your brain mets, i hope it is taken care off quickly do you can go back to beofre it. Kadcyla is doing some good for some while nothing for others , it is a super herceptin so it may work on you again. Check Denny123 on the Kadcyla thread she is a 13 years or more stage 4 survivor. Kadcyla got her to NED for 9months . Now she is on it again . I hope you soon get to find out hat tx they will give you and i hope it is the right one for you.
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Hey ladies, I just wanted to check in with everyone. I had a PET scan the week of thanksgiving and results the day before. I am on Ibrance 125/Femara and this scan was done at the end of 3 months. I was really worried because my tm's just kept rising. But scans are in and the results are good!! I started with 10+ liver mets and now only have 3! They noted the mass in my breast to be "significantly" improved and the lymph nodes in that side are no longer lighting up!! It was so nice to finally get some good news for the first time since dx 4 months ago. So back onto Ibrance for another 3 cycles(I hope). They wrote us a referral to a hospital in WA for a liver consult?? Anyway, I wanted to share my news and let you know I think/pray for you all daily!
Alissa
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Hi Missy, thank you for such a sweet reply. I am still battling with my inner demons. Every day, I wake up and it is a battle to be happy. Thank you for your input on seeking treatment from a large center. I am currently receiving treatment in a small one. The big one is 3 and 1/2 hrs away and then of course 3 1/2 hours driving back. So far, just one cycle of Xeloda and Taxotere. I have 5 more to go. It was rough the first week, but it got better. I am handling Xeloda good--for now. My oncologist wants to lower the dose to 5 a day instead of 6 a day next cycle. I am not sure how long the Army will let my husband be with me to help me through the treatment. He eventually has to get back to work, but we will see. A day at a time. overused, but I still can't help but worry. What are your struggles? I am glad you took time to write to me. It gets quite lonely being in our position especially every time I open Facebook. I see people and their peachy lives. =( I know I am a debbie downer today. haha sorry. I saw a story about a liver met girl who's still alive after 10 years...She's treated at MD Anderson though, but there's still hope. I can live with being treated at a small facility as long as it is convenient to people who are taking care of me and it will not take my time away from my kids. I will just leave everything to God, and I will just talk to you and the girls on here and get idea to suggest to my oncologist. It's like having a team of specialist. wink wink
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Shetland, Thank you!
I forgot to thank you for the link you sent. 0 -
Dear liveformybabies,
It really hurts to hear young women like yourself battling this disease. Of course you're Debbie Downer sometimes. Come here to vent so you can be present for your kids. Whatever you can do to put the focus on spending time with them- having fun, being silly, all the things you probably haven't done in awhile- are important to keep things as normal as possible. Once you have been with Stage IV for awhile, things will likely settle down and you will actually begin to feel like life will go on. It's hard, I know. Hang in there. It gets easier.
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Hello Ilivefor . .
I don't think you are being a downer at all, I think everyone has highs and lows! My first 3 months after dx were horrible! My tm's kept going up and my anxiety did too. I am now 4 months in, I still have anxiety, especially when it comes to my 4 very young kiddos, but it has gotten a little more manageable. I don't think it will ever go away completly, and it is really really hard to see everyone on facebook or in real life, and it seems they have life so much easier. I totally understand, you are not alone. I think these types of places are so important, so you don't feel alone. I find in real life, no one understand a whole lot about stafe 4, so they just keep saying, I think by this time next year, this will all be behind you. I have learned to smile, they just don;t understand our world. Hugs to you!!!
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Woodylb,
As always, your replies are wonderful. Thank you. It shows how much you care for people who are just starting their journey. Yes, I kinda realize that Xeloda by itself, I am toleration well because after the WBC shots, they put me back on Xeloda, and I was fine. Just tired, but none of the nonsense I encountered on the first week of taxotere with Xeloda. the doctor is keeping me on the same regimen but lower dose of Xeloda, 5 pills vs 6. Thanks for your insight again. Wishing you well Woodylb as you continue to provide support to most of us in this forum. xoxo
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My mets have just progressed to my liver so I plan to join you all here in liverland. I also have lymph nodes, skin and chest wall mets.
I have been on gem/carbo since the beginning of October, but I have had progression so now I'm working with my MO on what is next. I'm hoping to get Lynparza/Olaparib off trial but if that doesn't pan out or if it takes too long then we'll probably go with another chemo.
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Hi, Viceroy...Liverland, this is very funny to me. I feel very much like I'm in Liverland. I'm not sure I ever gave my liver a single thought up until 4 months ago. Now it's central stage, starting with when I called it my liver baby, as I'm sure I was about 6 months pregnant. Anyhoo...
Yup, it's easier to deal with stage IV now than it was 4 months ago but I can't imagine this looming darkness will ever fade entirely either. It just feels so weird...surely I'm gonna wake up soon because how could this really be? So many things I do, I do with a silent sad question in my head. "Will this be the last Christmas?" Oh, I wish I could make that voice SHUT UP!!!!
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I do the exact same thing kaayborg, the silent questions. So far I have not found a way to turn it off. How can we help it? I also have the weird surreal feeling that this is all a dirty joke....Woody, I am not guessing just repeating what my Onc said would be next IF I can't continue on mu current stuff. My liver Dr. today said it may be an auto immune disorder rearing its head due to the meds which he said is easily treatable. So I may be able to continue on Femara/ibrance when and if they figure it out?? I am trying to figure out how to keep the spirits up a little more consistently, but any kink in the process sends me reeling. You are right though, time to enjoy the Holidays! As my DH says "Whatever happens is going to happen whether you are freaking out or not, might as well be calm and wait and see." Good news Mama! Whoop Whoop! Welcome to Liverland Viceroy, Sorry you have to be here but it is soooo supportive and soothing to talk to the other women. ILive, Sandilee is right, you do get used to all this to a certain degree and it does get easier.
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Kaayborg - When I was first diagnosed I thought I was going to die right away. I also went out on disability. Now I'm pretty sure that it will be awhile before I die and my new normal includes lots of pain meds and random trips to the ER. With all of this I've decided that it's time to go back to work. I like my work and I really like my coworkers so it's something that doesn't cause me stress and I'm looking forward to it but 2 months ago I thought I had to be pain free and basically healthy to carry on with my normal life and now I know better.
Artistatheart - I like the advice to just relax and see what happens. It's not something that I'm very good at, but I'm working on it.
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Viceroy, I find that being at work with my wonderful coworkers and all of the kids helps me tremendously! Really keeps my mind off of things for almost the entire 8 hours......I plan to keep working as long as possible.
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Artista and Viceroy
I too find work the best way to escape the thoughts and fears that I sometimes have. I also tend to plan going out much more than before my dx. I want to enjoy my time on earth
Bab
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yes babs, i just bought some great seats to a big production of the Nutcracker to try and get the Christmas mood rolling!
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Ferber and the holidays have been very hard for me. Dec 13 marks 5 years since my initial diagnosis and the 7th marks my 3 year stage 4 diagnosis. This is the first December in the past 5 years where I am not angry or resentful. It's stil hard but I am happy to say that I am enjoying the season this year. So there is hope.
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iliveformybabies,
Wonderful, i am happy your dose is reduced and you are more comfortable with it. It will get better eventually , specially when you scan after the treatment and the scans are good . You soon forget and start breathing again. I hope this tx will be the one and at the end you get the awaited results and you calebrate. I wish you SEs free days so you can enjoy the cmoing season and i will pray for your next results. Hugs .
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