How are people with liver mets doing?
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Yay, Shetland! And best wishes to you, JFL, with Abraxane. Very curious to hear how the cap works for you, too. I am beyond behind in responding but have been reading. Please accept my general welcome to those of you who are new. I am glad you found this wonderful system of support.
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Hello Kaayborg! I don't think we have ever coresponded but I see you have been on carboplatinum for a while. I had gone 7 months with nothing responding to my disease, so my MO put me on Carbo. I am not triple neg nor do I have BRCA, but I do have BARD1 which is closely related to BRCA. I started end of June and TM's have been dropping. I do 3 werks on and one week off. Can you tell me what cycle you do and what your side effects have been? I was so happy to see that you have been on this for awhile and you are doing well. I pray we both get many years on this treatment. It is a pretty easy chemo considering I had worst side effects on Xeloda!!!
Best, Robin. Feel free to inbox if you do not want to post on board!
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Shetland this is truly terrific. So happy for you!
JFL best wishes with Abraxane.
Lumpie watch out for ascites, we see here quite often how MO's are truly off their rockers not being astute and sensitive with ppl that had a cancer dx to think of mets. My DD so young in her 20's, complained of back pain, shoulder pain and her MO AND SURGEON dismissed it, i sent her to an ortho when he did an Xray he almost fainted. And this was in a large Center in NYC! Yes, you are in the lucky team.
Hi Kaayborg, glad your are doing well. Interesting carbo was so hard on Dani. She was on it for a very short time, but it's potent that's for sure. Goodluck Robin.
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Momall, i do weekly Carbo and find it very easy. It just goes to show how every drug effects everyone differently. My MO said weekly carbo was tolerated better than one big dose every three weeks. I would love to do chemo every three weeks because going to the oncology for chemo every week is tiring.
I don't post a lot lately bc I was taking a break from cancer. I have to do that from time to time to keep my sanity. But always have you and young Dani in my prayers as well as all the other lovely ladies on this forum.
Robi
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Shetland - Awesome news!
JFL - good luck with Abraxane.
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I know Robin, thanks to all of you wonderful ladies, i keep going, honestly, for me it's easier to check in.
So today we got back the results for the PDL1 and Dani is negative for it. I am still waiting to see the report, I'm disappointed because I was counting on it to be an easier segway for Immunotherapy if needed. I did start reading about it, it does not mean that's a nono, but to begin with Immuno is not so big for BC it seems, and not being positive means that it may work only on a small portion of ppl that show negative for it. It's just complicate things. Too bad. Well we have to wait 2 more weeks, then we'll know how this trial is coming along. Just trying to prepare.
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Robin, nice to have a carbo buddy. I started on gemzar and carbo, 2 weeks on, 2 weeks off. Then gemzar was reduced, then reduced again, then we spaced more, 2 weeks on, 2 off. Finally settled on just carbo 2 on, 2 off. The problem was low platelets. Also whites but neupogen and neulasta take care of that. A year ago I did develop the cargo allergy and now do a very slow infusion, 16 titrations with benadryl...takes about 5 hours but I still just love carbo. I feel great on it...no crappy side effects and it is still working, far as I know. Pending results of my scans currently. I hope you get a long and pleasant run as well. Check in anytime.
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Mom I'm negative that too. Actually, I am positive absolutely nothing except cancer. Still, I do well for now and hope for immunotherapy success anyway when the time comes. Wishing the best for Dani always.
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I wonder why my oncologists have not ordered a liver biopsy? I read here that it can change. Will be asking soon.
One PET CT report noted "fatty liver" and that was new and different. The next noted liver mets.
I could feel the liver involvement, the stitches in my side when I even leaned to the right. The mild soreness of elastic skirt band along the side too. When TX works, this is the first to respond.
Cancer spread through all lymph nodes in bronchial, supra? clavical, neck, along esophagus. Tried to suffocate me really. Ended up with radiation twice so I could breathe.
Now am on Xeloda, 2000 mg 2x day - 14 days on and 7 days off. Goal is 14 but I get to 10 and am done in. My oncologist is old school about the dose, he says the 14 is working and wants to stay on it, But frankly, and I told him, first cycle I wa on a titrated dose that slowly increased, never got over 3 pills twice a day. Next two cycles got me to 10 days each time. The next cycle I got to 14 days. Thought I would die on the next two days though off TX, then bounced back but barely to begin again. So fact is the CA markers were decreasing during the 10 day doses.
This oncologist was a fill in until the new team arrives, holding out but glad he will be gone for my next visit. Hope the new team is all I hope for.
I enjoy reading and learning, really appreciate what everyone shares, it all helps in so many ways.
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Wonderful news , ShetlandP. Very encouraging to hear TMs can be in the normal range again. Although my TM's are not normal, the CT scans indicate I am stable.
I am currently on Faslodex for the last six months with no side effects except for a sore butt. However, I feel it's a small price to pay, knowing that someday I'll have to do a chemo. Previously I was on Palbociclib for 2 years and so far , hormonals appear to work for me.
It's a beautiful day.here, think I will get some weeding done in the gardens, the flowers have been really nice this summer.
Kathy
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Bluebird, never forget that YOU are the one in charge. My MO told me that whatever we do, it's supposed to prolong our lives and bring a relatively decent quality of life.
I started out at 4000/day 14 on and 7 off, and it was too much for me. We dropped the dosage twice, and now i'm on 3000 7 on and 7 off. Been on that dose for 9 months. It's very doable. I have been able to travel and go out with friends. Research has shown that smaller, shorter doses are just as effective. Hopefully you can persuade your new group of MOs.
You will still have the fatigue, and my dizziness has increased as my red cell count continues to plummet. That's to be expected when you've been on X for almost a year and a half.
Pet scan on Monday...hoping for stability 🌞.
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Thank you Lita - and Kathy, wish I could see your garden. Had to stay out of mine due to lupus sun sensitive but I do have deep tubs planted with cosmos, my favorite, all across the deck where I can get to them in the shade more often, lovely. And NO weeds!
I don't know if this is liver mets getting better, worse or if it is the Xeloda toxicity catching up. My liver is stinging and throbbing all day. Just sitting here telling everyone what to do, hahaha.
Is there a secret to knowing the difference? Cancer cells dying, growing, toxicity?
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Bluebird - not an easy question to answer. I ask myself the same question.
Liver biopsy results show no change, still ER+/PR+
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Awesome news Shetland!
JFL, anxious to hear about the cold cap too although it's too late for me. Mine was coming out in handfuls so finally this morning I bit the bullet and shave it off. it was scary at first with some tears but as I went on it became almost perversely satisfying.....I am on Abraxane too, 3 weeks on 1 off. It is hard to say how it going yet as I was so weak from the ascites. Plus My WBC went way down so he put me on a strong antibiotic, Cepro which I think is affecting my nerves badly. So it is hard to say what the SE's are from......Luckily only 3 pills left of that so I hope to be able to feel much better next week.
Lumpy, as Mom says look out for the ascites. Mine were not Dx'd in a timely manner and really dragged me way down for weeks now. I think I am finally on a slow climb up but wow, it drained me to ZERO energy.
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Artist, good to hear from you. Was wondering how you were. Pray that you'll be back to your old self by the end of next week 😄.
Been a rough few weeks for me...so tired and light-headed...stomach issues too. Must be the chemo toxicity.
Scans and blood next week.Fingers and toes crossed.
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Lita - sorry for rough patch and hoping for boring scans for you.
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Artist-glad you're feeling better even if its only a little- better going in that direction! Please take good care of yourself!
Babs
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Kaayborg, I did one round of Gemzar and it lowered my reds cells and I had to have a blood transfusion and I was off treatment for 3 weeks. So my MO pulled the Gemzar and I just do Carbo. My infusion is only 45 mins of premeds and 30 mins of Carbo. Wow...5 hours is a long time. Sorry you developed allergies but glad you were able to stay on it. I agree with you that Carbo is an easy treatment...no side effects for me except the fatigue and a little nausea from time to time. Praying for a great scan for both of us!!! Mine is at the end of August!
Robin
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Thank you, Everyone, for your congrats and good wishes on my normal TMs. I appreciate every comment. It is so good for us all to not be alone in this.
Buras, your bc history is a bit complicated at this point. I would look into getting genomic testing (such as Foundation One) on the tumor to help with treatment and/or trial choices. Also, I would get a 2nd opinion onc lined up, at the best cancer center you can access. You say you will save Y90 for last because of logistics. I recommend you and your onc talk with an interventional radiologist about watching you to make sure you do not miss the window of opportunity, if Y90 is indeed a good option for you. You can't do it if your condition gets too bad.
Linda, a hospital stay and 5 samples sounds difficult. I hope you are feeling better now and that the biopsy yields useful info.
Grannax, reading that you got a complete response to Y90 makes me very happy for you, and helps me feel brave for when my onc says it is time for me to do it.
JFL, best wishes for Abraxane and Dignicap. I bet you will feel better soon. Smart onc, to order Caris for you.
Robin, happy to hear that your TMs are dropping on carbo and that your QOL is good on it. And kaayborg, may it continue to work for the most amazingly long time.
Ah, Kathy, being outside with your flowers is the best. You could become an expert on shade gardening and create an amazing container shade garden on your deck. Pore over some library books if that sounds like fun. Stable and Faslodex sounds like a good deal.
Artist, things are about to take a turn for the better. So sorry about your hair. You are fiercely brave. My hair was long before Taxol. I like it short now, it looks good, but I'm looking into a long wig to use as a fun accessory for dance performances.
Hugs to all, even if I didn't name you just now!
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Artist, I totally get it about feeling satisfying to shave your head. I felt that way when I lost my hair previously. The falling out was traumatic but the shaving was just such a relief at that point.
I will keep everyone posted on the Dignicap. Funny, the abraxane infusion was about 20 min but the cold cap process was over 3 hours. The first 30 minutes during the cool down process was very uncomfortable, I wondered whether I could make it through the chemo session, yet alone all my treatments. However, once it was cooled to 32 degrees, the final temperature, it was fine for the next few hours. I will be annoyed if it doesn't work as it is definitely quite a process and is also expensive!!!
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Kaayborg, thanks for the response and a cute one at that. Yep. I did find something saying it's not the end if one does not have the PD1, it's just that certain drugs are for sure attracted to that. So that makes me feel a bit better. Did not talk to MO yet.
Artist hugs and more hugs. There are no words. My DD did the same thing when she was going through it. She felt exactly like you said. You owned it. Re: Cipro it's really strong, I don't know what dosage you are taking, but from experience if you could divide the dosage it's easier to take, as oppose to all of it at the same time.
Lita so sorry you are going through such an unomfortable time, fingers and toes crossed.
LindaE at least now you know it's the same. The HER2 was checked also? And you are staying in this treatment?
JFL best wishes! Hope the cap works.
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Yes Momall - negative for HER2 and still Taxol. MO wants to move up scan and not wait until Oct.
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Hey ladies, just checking in. I rarely post, but read quite often. I am just starting my 6th cycle of Xeloda after 15 months of Ibrance and 2 months of a Kisquali trial that was a flop. Scans from last week show stability in the liver and the nothing is showing at all for my breast tumor Harrold! I am hoping we can stay the course after so much up and down. Great scans, but then rising tm numbers today. Glad to know from the boars they can go back down. Hugs to everyone here.
Alissa
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Excellent news Alissa!
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Alissa - I was on Ibrance, worked 2 mo. I declined Kisquali for that reason. I also declined trials since I was too far gone to mess a round. Glad you are on Xeloda now, I am too.
Won't know how liver is doing until December when I elect to finally have a scan before insurance year turns over. But when off Xeloda for recovery time, I don't hav pain in liver area after two days off. So hoping a but lower dose will diminish or clear that problem. When first on Xeloda the liver pain stopped completely after a month or two. Scan showed lesions had cleared pretty well, they had been large. Pain started afte 3 cycles on Xeloda at what I think is too high a dose for me or anyone really.
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Got my three monthly CT scan results today , and sadly the spots in my liver have grown!
I was actually more worried about my back as I have been suffering painful sciatica for the last 4-5 weeks and was convinced that it was the cancer spreading. But apparently, my bones are all clear , and the cancer is nowhere but in my liver. I'm in for a MRI on my back on the 5th Sept and hope this doesn't find anything. So I'm going in to see MO this week and she's taking me off Ibrance, and putting me on a new chemo - unknown which one yet. Just trying to distract myself for tonight with some cross stitch and gentle TV series (actually a great BBC one on Amazon Prime - Lark Rise to Candleford. Ive seen this before but am happy to indulge again whilst distractions needed) Feeling a bit vulnerable as how can we escape these slaps in the face!
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scwilly, I have degenerative arthritis in addition to bone mets. So my pain is 6 of one half dozen of the other. I also have bulging discs. Arthritic inflammation can lead to sciatica and disc problems too.
Hope you get some answers.
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Scwilly - sorry about progression, it's always a slap in the face but another hurdle you will overcome. Hoping MRI is boring. Sciatic pain is painful.
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I've just received the bad news, my cancer has mutated and progressed. Brain MRI scheduled. Also major progression to pancreas and abdomen.
I am numb with this news. On to full blown IV chemo, joy of joys.
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Lita - no words. I am so sorry to read this - thought you and Madame X were going to have a longer dance. Do you know which chemo is next? Gemzar? You and Scwilly are welcome to join me on Abraxane. Please keep us posted.
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