How are people with liver mets doing?
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JFL - thank you for the information so great to hear from someone in a similar situation. You said the Eripuricin decreased your liver tumours, but still you had the Y90 in april.
Where did you have that done? How much does it cost? How long does it take to do. is it done once or once a week for x times.
Look forward to hearing from you about this.
Raven
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So I went in today gave me lots of doom and gloom, and just what it's just a blood clot blocking the liver, never thought I would say just a blood clot now we wait for numbersxto go down and feel better
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hi ladies, last time I read thru this thread I wasn't impressed w/what I was reading. So, today out of frustration with no one to talk to about this liver mets I came back here.
Raven, your messsage on Aug 7th is so much the same of what I am going thru. I was Dx w/liver mets end of May after getting septic & had to have port pulled. I had been having a good run w/Halaven up to then. My liver mets since then seems to be moving fast, my markers went from 60 to over a thousand last week. My dr started me on Abemaciclib. After 4 weeks I have woken up today with the most liver pain with referred pain to my right shoulder. A lot of the responses have been very encouraging.
My MO has not mentioned Y 90. Does anyone know if you can do Y 90 or SRBT while on oral chemo drugs?
JFL & others have been so encouraging as I am still in my pity party stage over this.
Thanks, Sue.
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Sue I had y90 without having to stop Ibrance and letrazole. I think others stayed on their meds too.
Serb4. I can answer a few of your questions. The procedure is done like an angiogram. The doc goes in through the artery in the groin. The first one is called mapping. They have to look inside the liver to see where the all the veins are, to map out their plan of where to insert the radiation, yitrium 90. And what veins to block off so the radiation won't escape into other organs. A few days later they do the second procedure, this time they actually insert the tiny spheres of y90 into one of the two lobes of the liver. About a month later they do the same thing to the second lobe.
Each procedure takes about an hour and is done as a day surgery. They use CT scan to check to make sure they have everything like they want it. They will give you conscious sedation for the procedure so that you wont feel discomfort but are still sort of awake. It's called radioembolization, if you want to Google it. Or you can look up SIRT. It's the type of radiation I had.
Keetmom I hope those numbers go down fast with blood thinner and the clot resolves fast.
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Ladies, A little dark humor. A few days ago, I took in our 12 yr old Russian Blue cat for his checkup and blood work. Friday, the vet called me and said “Max had perfect blood work and was in excellent condition". I later picked up the report and relealized it was a combined CMP and CBC. Indeed, he was in great shape. Have you ever been envious of a cat? I wish my values were like his. Next week, labs again, I'll think postitive, maybe it will run in the family.
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Max Otto - very funny 😼
Question about pain... my liver feels like I am being stabbed w/a knife when I take deep breaths, my sternum hurts a lot too. If I am laying still , I have no pain. Is this the type of pain any one else has had?
Thanks, Sue.
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I logged in to BCO today after a long absence and find that I have 18 messages from 18 different people asking about my wellbeing. I am an introvert. I don't think I have had 18 people who cared about me at the same time before in my life. I am humbled. I think about you guys all the time.
Basically I have been having a great summer. One priority has been to reconnect with my brother and sister-in-law who the guardian of my kids in the event we both die. If I die and my husband dies he will take care of my daughters, now 12 and 14. My husband has a heart condition which, until the cancer hit, put him at greater risk of dying before the kids grow up than me. And honestly, my husband is not equipped to raise kids alone, without the support of a larger family.
My sister in law and brother are great people, but for various reasons, mostly my fault, we haven't really connected for years. It's been one of those weird gifts of cancer that all the disconnection disappeared and we've had a good time together. I was most worried about my older daughter (also an introvert) has connected nicely with my sister in law. Bittersweet, of course, but the net effect is to give me a sense of calm.
That has all been pretty intense and occupied my time.
I had good MRI in July. The scans show huge reduction in tumor load after 3 months of Abraxane along with fasting, a specific diet between fasting, a specific exercise routine and some supplementation. Liver selfies attached. More if you are interested, but these tell the general story. Huge improvement, significant tumor load remains.
My side effects from chemo have been manageable to the point where my standard of care onc and I decided to overload the dosing of the Abraxane by about 20%. The higher dose did give me side effects and put me in research mode. I tweaked my adjuvant (in the sense of complementary) therapies a bit in the last two weeks. We'll see how it goes.
I continue Abraxane with nutritional and other support. We monitor TM's, we scan and we see. Improving but not out of the woods. Brain MRI in October to follow up on brain lesion and gamma ray treatment is a big deal.
This is a very intense time for me on many fronts. I won't be posting much. I will pray for every one of you every day. And I will check in at least monthly with updates.
This community has carried me through the past two years. I would not have made it.
Z
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Zarovka, not one of your pm people, but also thinking about you. I admire the work you have put into your survival, you have also informed all of us of things to help us survive too. As a mother of 2 daughters, now Mothers themselves, I hope and pray you survive for a long time. Also respect your privacy x
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Z,
Thanks for checking in. You are missed when you don't post but I understand your priorities. Glad to hear that your MRI showed such improvement in your liver. You seem to be such a wise, loving mother. I am hoping that the new bond your daughters have with their aunt will simply enhance their lives as you stick around to mother them. I appreciate your prayers and pray for you. I've had a challenging time due to experimenting with my Ibrance dosing. Turns out the 5/2 experiment really messed up my immune system but after being sick for more than two weeks I am slowly getting better.
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Z. I was thinking about sending you a PM today. It was going to say " How can I be your stalker and granny cheerleader if I don't know what you're doing or where you are?!?!" Then I saw your post. 😄 To say you have been missed is an understatement.
Sounds like a very important reconnection, with a good result. I am so happy your MRI is better. And hope you'll get good news from the brain scan.
I seriously have missed you, it doesn't seem the same without you. But, I have seen others showing encouragement and knowledge in your absence. If you're getting a sense of calm from what you've been doing with family, then staying away is working. I'm glad you're going to check in occasionally so that I can cheer you on.💞
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Z, great to see your post! I’m an introvert too! Totally get that! Glad things are going well for you! I’ll have my brain mri in October, I’m about a month behind you. Abraxane has been ok for me too!
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Thanks for giving us an update Zarovka. You are in my prayers.
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hi Z it's so good to get an update and know that all is well. Your voice, research, sharing and support are sorely missed.!!! Please keep us updated...it's very important because we all care about you and learn so much from your advanced protocols.
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Well my trial for the AKT1 mutation has come to an end for me. I was about move forward as a single participant trial for this protocol when I was hit with a massive pain crisis caused by a compression fracture. For more details on how this unfolded please check my topic for the AKT1 clinical trial.
The nutshell version is that I have had two kyphoplasties and will be getting two weeks of radiation to a section of my vertebrae starting Aug. 20. I will also be screened for another clinical trial for which I will open a new topic once I have been accepted and have more details.
At this time I do not know if my liver had progression too but I will cross post to liver Mets thread anyway and circle back with the answer once I know
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AnimalCrackers, I'm so sorry to hear about your unexpected setbacks and hope your pain is being managed successfully. The unpredictability of our disease is unsettling...I was stable and comfy for two years on Ibrance / Letrozole, but kept waiting for that other shoe to drop, then one day it did. Best wishes going forward with a new trial! {{Hugs}}
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JFL, I am about to start a 1 week on 3 week of regime of Caelyx (doxil) I am in Australia so that may explain the name difference. Is this what you are currently on and how have the side effects been for you?
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Kathy, I'm so sorry to read about your recent setback, I'm sure the radiation will reduce the pain. I too have the AKT1 mutation, im suffering from two compressed vertebras but I'm currently on capecitabine with no major SE other than reduced breathing capacity,fatigue and brain fog during the week that I'm on it.
Good luck with the next clinical trial.
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Girls,
I need advice. My white count is down to 1.6 14 days after chemo. I don´t feel much different but had bloodwork that said I was low, which is of course a known side effect. Will I be able to go outside as usual? How have you managed. Also is there a chance it will come bak uo in 8 days for the next dose?
Also liver function tests have gone up and all the cancer markers??? Is this normal on chemo? I had 7 doses of Taxol then a switch to Epirubicin/ cyclophosphamid.
Any and all experiences would be greatly appreciated.
Raven
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Tennille- Did you have good results on your Liver with Havaven (eribulin)? How many rounds. I have liver mets tumour 5.6 cm that got larger on Taxol but other areas decresed.
How did you manage low white count. Mine is now 1.6 14 days after chemo. Due to have another dose in 8 days. Liver biopsy on monday.
Raven
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Raven, I'm sorry you feel panic. I'm not familiar with your new meds but if you've only had one dose or cycle of them it may not have been enough time to see results. ??? What does your MO say?
I'm sure you already do this, but I'd stay away from crowds and anyone who is sick with anything. I'm not a doctor at all, so disregard anything that disagrees with your doctor's advice. Your team is keeping a close eye on you! Hoping your numbers settle down soon.
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serb4 Was that your WBC or your ANC? ANC, absolute neutrophil count, is what they worry about. Usually if it's 1.0 or better you're ok to do chemo. When I was doing chemo, the 14 day mark is usually the lowest and it goes up from there. You should be fine to do your next treatment. Do you have a copy of your labs? It's always good to have your own copy of labs and scan report.
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Tennille, Doxil is treating me very well right now - I will have my 5th round, administered every 4 weeks on Friday, and I don't have any major side effects. I had a very rough go on round 2 with my feet feeling like they were burning from the inside out - second degree burns and dangerously large blisters. Very rough. However, I think some of that could have been avoided had I known how to prevent it and the Y90 I was undergoing contributed to some temporary issues. You may want to check out the Doxil thread. I have posted in detail about my problems and how I learned to prevent them. Also, rounds 2 and 3 are known to be the rounds when the rashes. Good luck! I am hoping I can stay on Doxil for a very, very long time. I feel relatively "normal" right now which a huge deal for me and had been a long time since I have felt that way.
Raven, typically the low point of WBC is around day 12-14 like Grannax mentioned on a lot of the chemos (the "nadir"). After that, your counts should start recovering. I don't know specifically about the chemos you are taking but some chemos cause intitial "flare" when they are working - lots of dead tumor cells circulating in the blood. I went through that on Xeloda. You may want to ask your MO about that.
Cathy, sorry to hear about your time on the trial ending.
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JFL- Epirubucin which I am taking is almost the same drug as doxorubicin which you are taking. I live in Europe so the drugs can be the same with different names. LIke you use the name Halaven which is also Eripuicin. All similialr drugs just different generic names. I get them every 3 weeks.
Granna X- will the white count, which is total white blood cell count come up in 8 days for dose nr. 2 ? Total count now is 1.68 I was 4.4 which is normal ,2 weeks ago when I started this chemo . Next bloodwork is in 7 days.
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Muddling- Thank you for good advice. worst thing is I had no idea and was out and about. Mall, grocery stores, soccer games. I feel fine. walk 3 km every evening. I am cooking, gardening and golfing a bit. I am not working on sick leave so I need things to do. I am assuming the Taxol worked on your liver issues as well. since you are already taking hormone therapy.
Raven
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Raven, white counts do come back on their own or Dr may prescribe med given by injection to help your body out. Also, your white count may have a new lower count, which is considered your new lower acceptable for you. My WBC never goes above 4, unless I have an infection. I rarely do not go shopping any more & avoid crowds.
One more time, some one please tell me if you have ever had liver pain, that hurts most when I take deep breaths, cough or burp.it is so sharp & definitely a 10 on the pain scale. Started on prednisone 2 days ago, which has taken the edge off. Just told I had liver mets end of May.
Thanks all, keep hanging tough, Sue.
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Sue2009 - I have liver and bone mets. I only feel pain from my bone mets. I’m not even sure what my liver feels like. Hoping someone comes by who has experience with liver pain. Perhaps the pain you are feeling is not from your liver? What does your oncologist think
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Serb,
When my counts were at their lowest point, I avoided certain hotbeds of germs, like my mother-in-law's assisted living facility and restaurants, but other than that, I was pretty casual about it. I still went grocery shopping, but I go really early in the morning anyway, so there are never many people there when I go. I carry hand-sanitizer in my car and purse; use that when you leave any public place and practice good hand-washing at home. Avoid any family members or friends who might have something contagious and avoid raw fruits and veggies during this time until your count comes back up. I wasn't religious about that, but used common sense. Don't do any gardening while your counts are down because of bacteria in the soil.
Katty
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Raven-My white cells are always low, 2 weeks after chemo (which is the week before the next treatment). They always came back up chemo day. I have traveled, by plane, and worn a mask, when they are low. I too avoid buildings, with lots of people (restaurants, church, malls, stores, etc), until they come back up. I also ask if anyone is sick, when visiting (or being visited) by friends and family.
Lynne
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Raven,
My counts this week were 2. So I wear latex gloves doing work. If I travel I wear a mask. You just have to be proactive. Don’t greet people with kisses and hugs and before I go to any family gatherings I ask if anyone is sick. I just stay home. Little kids are the worse. I visited my granddaughter and went to her daycare and came home with a raging bronchitis that lasted three weeks. Don’t change any diapers or clean up any cat or dog poop. Very dangerous. I peel all my fruit. I might be a super germ freak but I’ve always been. Doc told me to wash my hands all the time. Sometimes you just have to be a little rude but you suffer if you aren’t out with it. You don’t want to catch something especially stores with carts. They are filthy. Wear gloves and try not to touch stuff. My husband does all the shopping thank goodness. Hope this gives you some ideas.
Hugs. Anita
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Sue2009 I had HELLP syndrome when pregnant which includes elevated liver function - emergency C section within 4 hours of onset of symptoms, so not much time to evaluate liver pain :-) but it wasn't a sharp pain, more a discomfort and tenderness and a feeling of severe indigestion.
I've had liver mets since late 2017 and have felt no pain. Does yours hurt when you press on it or palpitate it? If you have bone mets it could well be a bone met in a lower right rib (same area as liver). When I started chemo when I was first diagnosed I had tumour flare in my bone mets and the sharp pain, hurts to breathe sounds very familiar. I was convinced I had cracked a rib and later scans showed fracture healing. I was put on bisphosphonates from the start too so they did heal relatively quickly.
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