How are people with liver mets doing?
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Thanks Shetland. I really like my MO and trust him completely. Communications are not always perfect but I feel we have built a really good rapport. We understand each other after all of our years with the patient/doctor relationship. He’s open to just about any discussion of treatments and is super responsive. (The downside of the responsiveness is that I was prepared for bad news when he didn’t send me a note regarding the results of my scan... oh, oh.) He’s definitely a keeper.
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Sadiesservant - Totally understand especially with your experiences with Xeloda in the past. However, if your MO opted to try Xeloda again, there had to be a reason he though it might work, and I would think he would want to give it a chance to work. For all these drugs that takes some time - some less than others, others need longer. If you are clinically getting worse, it certainly makes sense, but I would still opt to have a scan before switching to understand the bigger clinical picture. What you decide with your MO is a totally personal decision based on what both you and he agree upon. I certainly don't mean to interfere with that.
Hearing you have live mets is scary. The liver is the first site of metastases for me, so I understand it only too well. I was surprised to hear so many people on this site doing as well as they are with treatments. Many very smart and well-edcuated, and strong advocates for themselves and others. And very willing to share experiences. I am still scared of all this but after two years, I am taking it a bit better day by day.
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Sadiesservant, that makes sense with your previous experience with Xeloda. I completely understand not wanting things to get out of control and having complete trust in your MO. I do, too.
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Thanks H&G,
I am typically good at keeping the panic at bay but have definitely been knocked back by this. It makes things seem suddenly much more “real” if that makes sense.
I really appreciate the input. It helps me frame up my questions and conversation with my MO. I can say he is not one to jump to a new treatment without cause. When things progressed on Arimidex he took a wait and see approach for quite awhile, making sure the reported progression in my bones was the real deal.
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Dear JFL, uhh, huge congratulations on getting Enhertu! This is and will be a game-changer for you! Saulius
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Hello my dear friends. I got home from Hospital today. They still do not know what is causing the pain in my liver.... I think it's just reacting to the Y90. They have given me the Dillaudid in Anal Suppository form. I took one at 230pm my pain was around a 5/6 its now about a 4...maybe 3/4. I just hope it keeps working. One thing that really really bothered me was the "PA" in the hospital on call for the Internist that does the rounds tried to say the pain is from progression in my liver!!!! ARE YOU JOKING?>??? I mean clearly she knew from not only me telling her but from looking in my records that I just last week had a PET scan and there was NO UPTAKE AT ALL IN THE ENTIRE LIVER! So because you don't know what is causing my pain you tell me its progression!!!! YOU are not even a DOCTOR you are a PA and you are not in the field of Oncology. That really pissed me off.(as you can tell) I mean I have only had 1 treatment actually work and you are trying to say it didn't?!?!
Anyway I geuss I am a freak bc we still can't figure it out. Right now I am trying to just focus on today. Someone mentioned on here about getting Ibprofen in suppository form...I am told they don't make it in that form ...so if anyone has had it done please tell me where/how. Thanks,
I gottango bc I cannot type well at all.
Love you all so so much,
Nicole
PS: looking at AA/Exemestane or Verzenio/EXE..... Next....anythoughts???
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Nicole, so glad to see you posting. Wish the pain was behind you though...
I rolled my eyes with your story of the PA. There really should be a mute button on some people! Why techsthink they can hypothesize about illness when they are not the experts. I had a similar experience recently with my bone scan. To preface, they have always been pretty useless for me. Bone scans show almost nothing but the CT? Extensive bone mets. To be honest, I don’t know why my MO bothers. Anyway, the technician was clearly someone who has a tendency to run off at the mouth. I think she was trying to be supportive but she wasn’t helping. She kept saying “I’m pretty sure there is no change. I can’t tell if there is improvement but definitely no progression...” When I said the CT scan would be the deciding factor she said “Yes, you are odd. Usually bone scans are much more definitive. It makes me wonder if it’s something else.” Seriously? So you’re saying my oncologist has it wrong? Makes me want to reach out to her to tell her she was right, no progression showing in my bones but there is “something else” in my liver now. Good grief....
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Nicole and SS,
I agree about people keeping their mouths shut when they don't know what they are talking about.
However, I think that the prevalence of PAs and NPs in the United States is a reflection on our health system here. Most hospitals have gone to hospitalists for in patient care. But most hospitalists (PAs, NPs, and physicians both) are generalists, and they don't know crap about our situations. So they really shouldn't be spouting their own theories about what is going on with us. Additionally, and I've ranted on about this before, I just don't get it that medical professionals no longer talk to each other. So that PA should have contacted the doc -- preferably YOUR doc -- and talked it through.
I even have this beef with the NP who sees me in between MO visits. Sometimes she comes out with things that I want to say to her -- really? really? have you even looked at my chart on that computer screen in front of you?
Big sigh, but we sure don't need these kinds of things going on -- we all have enough stress dealing with our illness. Don't need any more dealing with stupid people.
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We have NPs and GPs involved in our care here in Canada, particularly to assess side effects between rounds of chemo and to deal with fever, etc. Similar experiences.
We have an expression at work regarding staying in your lane. Medical professionals seem to find this exceedingly difficult. I’ve even had other specialist MDs weighing in on my systemic treatment. I try to keep in mind that it is usually well meaning in that they think they are providing support and reassurance. I just wish they would consider the consequences when they are wrong...
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Hello. I’m new to the forum and I am looking for some support with this diagnosis. I was originally diagnosis in 2016 with stage 3 breast cancer and underwent chemotherapy, surgery and radiation then tamoxifen.
In January 2020, I was diagnosed with metastatic breast cancer to my liver and bones. The tumours were taking up 80% of my liver and the largest tumour was 7.5cm. I also have extensive bone metastasis.
I was started on Ribociclib and letrozole which failed. I was then put on docetaxel every 3 weeks and have now had 12 cycles.
The docetaxel has been working slightly with shrinking the tumours but the side effects are terrible. I went from running 5-10km daily to where I can barely make it up a flight of stairs and have trouble walking or standing more than 5 minutes. I have also been extremely tired and sleeping most of the day.My oncologist did decrease the dose with the last infusion but I’m scared to go down any further.
Has anyone else been on docetaxel for this long? If so, any advise on energy level and combating weakness?0 -
Hi SuzyS, I'm glad you found this thread, but I'm also sorry you've had to join us. I took doxetaxel back in 2015 with initial treatment, but only for 6 cycles. I didn't have liver mets at that time, but I do remember the SEs well and feel for you that you're having a tough time. I was afraid of a dose reduction, but now I have permanent neuropathy and wish I'd done it then. Has your MO said how long he/she wants you to keep going with it? Or indicated what might be next steps?
Nicole, good to see you post, but damn it! I feel so bad for you that you're still having such pain. I'm also very angry for you! I don't blame you one bit for being so pissed off at that PA; not even knowing what she was talking about! Btw, congratulations on that great PET scan. Now if only that pain would go away. I hope you can get some good rest. Hugs & love as always.
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Hi SuzyS, welcome and sorry you find yourself here. I'm not on decetaxel but I've been on the other taxanes since last March so 11 months now. First was on taxol weekly and now abraxane every 3 weeks. I've had to have 1 dose reduction on each of them - I can't seem to have full dose anything (was same during my Stage 1 treatment in 2018). I was super super exhausted early during taxol treatment - so much so that I was just in awe of people who had been on it for close to a year because I couldn't imagine staying on it so long.
One thing I'm wondering about is your bloodwork. I think I was partly so exhausted because my liver was really out of whack. I think metabolic processes weren't functioning well. It wasn't until I got really good shrinkage happening that I started to feel a bit more energetic.
Are you eating?
Things turned around for me at about 5 months in, but yes, before that there was a time when standing was hard. For a while I was essentially bedbound - only getting up to bathe, go to bathroom and attend appointments or moving to a chair somewhere else. But there was also a time when sitting was tiring. It was bad. When I started getting better I had to drag a chair to the ktichen counter so I could rest in between stirring things - & I wasn't cooking, just reheating stuff.
Now I'm doing 2 x 30 min walks/day and about 35 min of Zumba M/W/F. So hang in there, it can get beter. Give it some tme after this dose reduction and see if you bounce back a bit.
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Nicole, I'm so glad to hear from you. I was hoping the sludge/gall stones were going to be the easy answer for what's causing your pain. I hope the new pain relief works for you. And ugh! to the PA running off at the mouth.
SuzyS, I don't have a single word of advice for you, but I can 'hear' the stress in your post. I'm so sorry you're here with us, and I hope some of the other amazing ladies here have something to share. Send cyberhugs your way.
JFL, great win getting the enhertu covered!
I've been reading along, thinking of all of you. I've been in what I call 'vapor lock' again. Turning things over and over in my mind, unable to find the right words to write. I had a long (3 hours!) video call with one of my sisters today. We just chatted about anything and everything and shared 'happy hour' with a glass of wine and cheese and crackers. It was just what I needed.
I have a PET/CT scan early Thursday morning - which I am expecting to go well (here's hoping!). Then, I have an appointment for my COVID vaccination late Thursday afternoon - it was the only one I could get, and I didn't want to pass it up. It took several calls to make sure there was no conflict having both on the same day, but it all seems to be okay. I'll be happy to get whatever amount of protection it will provide. I'll get scan results at my MO appt next Wednesday.
(edited because part of that belonged in a different thread)
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SeeQ- in your pocket for scans on Thursday. Hope all goes well with COVID vaccination. I have a couple 100,000 people ahead of me, so no vaccination for me for awhike
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Ladies...I just got a call from my IR.... so if I am not feeling better by next week she wants to do something called a Celiac Plexus Block...basically it blocks nerve pain. I think she is unto something here bc I met via video today with my GI doc and he was saying he sees this all eloving..and how it went from the stomach/colon now to liver and he thinks it has to do with nerve pain. This would solve that. The only downside is you can get diahreah for 5 to 7 days...(which those that know me well here) know I TEND towards constant consitpation so that could make me regular. lol. Anyway I just love this IR she literally calls me every week to see how I am. I told her what the internist in the hospital said about progression she goes "Nicole right now your liver is DISEASE FREE"..... and she is not the only one that said that the RO's at Invova said the same thing.
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Nicole- I am so happy for you that your liver is disease free and you have an option to ease the pain. HOPE helps overcome the hard stuff.
Dee
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Nicole - that’s excellent news on your liver mets. I pray for that! If it is a nerve issue I hope the procedure takes care of that and allows you to be pain free
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Nicole: Yay on resolved liver mets. May it continue forever. May your pain be gone soon.
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CONGRATULATIONS JFL on getting the approval!!! I always say you’re so inspirational and a true hero! I hope it continues to do wonders for you and get you to NEAD soon!!
Nicole, I’m sorry you’re experiencing pain after your Y90! I totally get that, I had a few horrible weeks after that surgery and I still get PTSD from those days but it’ll pass, I promise! The most important thing is that it worked and you have no activity in liver, forget about that PA!!
You asked about AA and Verzenio .. I was on Verzinio for a few months and was working great before I had my Y90 and it took care of all my bone mets and most of liver mets at the time but unfortunately the surgery messed up with my ability to absorb the drug and it gave me horrible SE and stopped working right after. Don't be discouraged with all the reported SE though .. it wasn't as bad as I thought. The diarrhea is there but mostly manageable. I did take immodium a few times but I feel what helped a lot is a strong probiotic... I got the Renew Life from Amazon with I believe 90 billion strands and it really made a difference. Otherwise it is a relatively easy drug to take and when it works it works!
I have started AA a few months ago and have been trying to manage the side effects since .. some days are better than others both physically and emotionally but what can I do! I don’t have many options so lately I just try to suck it up and try to put up with side effects as much as I can
Shout out and a huge thank you to all who posted supporting me with my fear before my brain procedure snd treatment change!!! You all rock!! I had my gamma knife as well .. it definitely went better than I feared but unfortunately it didn't take care of the 3 mets they found completely but scans show « no new definite mets » whatever that means. My PET scan results are also coming up so we'll see what life holds for me. Scanxiety is real even after the hundredth time I still worry.
Will try to post when I get the results back if I will continue on AA or not! Prayers please!!!!
Heba
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Dear Nicole, wow, through mountains and seas but... you are slowly getting there. "Disease free" is all we want to hear, that is a big win!
Dear SuzyS, my wife had 12 rounds of Docetaxel, and then another 6 rounds after 9 month break. Was very tough. But our MO told us about a woman who took it for 27 cycles straight and was feeling just fine, blood was recovering... for us, we needed lot's of Neupogen shots:/
Other news: my wife today got a Pfizer/BioNTech covid-19 vaccine, hurray!!!:)
Saulius
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JFL- You rock! That was hard and stressful to get Enhertu covered. Prayers that you get paid back too!
Salius- Yay for the vaccine. It should give you some peace of mind.
Heba- prayers for AA to work for you and that the gamma knife at least stopped growth.
Seeq- will be thinking of you.
Nicole- hoping whatever is next for you gives you good results and peace
Update- My BP in the morning is much better. Hopefully the afternoon and evening readings will soon improve. I’m so tired of the daily headaches. My PCP said I have lived with them since last summer so while they are annoying- getting the BP under control is more pressing. At least the brain MRI’s were clear. I hope to get my scan & plan rescheduled. It was postponed due to Nashville weather. Stupid scanxiety has me all in a twist.
Dee.
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oh Nicole, - liver 'disease free' - what sweet words!!!! tears of happiness for you girl!
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Dee, yay for clear brain MRI, and improved morning bp readings. Fingers crossed the afternoon and evening readings subside along with those headaches. Hugs.
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Dee- good news on brain MRI!!! Yes!!! Nice to hear improvement in BP am readings. Hope they are good throughout the day and this is the new trend. Maybe the headaches will start to resolve......
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AlabamaDee, that is great news about the mri.
Nicole, you have gone through so much after that Y90 procedure. It is good to hear that your liver is clear. I pray that you can get the pain resolved. That has got to be debilitating.
Saulius, good to hear your wife got the vaccine. Hooray!
Heba, you are in my prayers for success with your current treatment.
SeeQ, praying for good scan results.
SusyS, praying you get your energy back.
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I did not mean to confuse anyone- I had two brain MRI's last year when I started dealing with headaches and then migraines. Both brain MRI's were clear. I still have the headaches but I don't feel like I need another brain MRI until my yearly due in Aug. I am just so tired of the chronic nagging headaches, they got worse with covid. My neurologist said we would work on controlling the migraines first then we would talk headaches, meanwhile my BP went wonky during my bout of covid. It's always something 🥴
Dee
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Nicole - I'm so happy that after all the pain you've endured, your IR (the true expert!) confirmed that your liver is DISEASE FREE!!! Shame on that PT for not checking your scans and acting like she's an expert. Fortunately you knew more than she did. Your IR is obviously very compassionate and doing everything possible to resolve your pain. I'm praying that you will soon be PAIN FREE!
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Thank you for the support and advise everyone🤗.
Bliss58- my MO suggested to stay on Docetaxel until the side effects become too overwhelming or it stops working. I believe we would just switch to another chemotherapy after this.
Moth- my blood count and liver enzymes are normal. I’ll give the dose decrease a little more time. Thanks for sharing your experience.
It’s wonderful to hear the good news from others scans and tests. It’s so encouraging!
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Thank you Theresa, ladies and Husband 11! Theresa I really do LOVE my IR. I am so amazed that she has literally personally called me once a week since my procedure. I am basically 100% sure I want to do the Plexus Block. I even asked my GI doctor about it and he said hes on board with me giving it a try.
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Nicole - I'll be praying that the Plexux Block puts an end to your pain! Your interventional radiologist is truly exceptional! I love my interventional radiologist, but even getting in to see her is REALLY challenging. I'm 3 months out from my last liver ablation and want to have her review my latest CT scan which shows some progression in the liver. I'm having trouble even getting an appointmnt. Sigh!
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