How are people with liver mets doing?
Comments
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AlabamaDee- Thinking of you for your scans/results. Scanxiety is real.
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Dee,
Good luck with the scans/scan results. Hope all goes well.
As for the faslodex shots showing up on scans, the day of my most recent CT, I had my blood pulled and my shots in the butt. In conversation, I told the nurse who did those that I had a CT scheduled for a couple of hours from then. She put in an IV line to make it quicker for me when I got to imaging, but also said that the faslodex shots would show up on the CT. Sure enough, they showed up as "pockets," but luckily the radiologist must have looked at my records and seen that I had had the faslodex shots the same day.
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AlabamaDee - hope your scans go well and show stablization or better, SHRINKAGE!! I have CT tomorrow, really hoping for continued shrinkage
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Good luck Dee! Lots of prayers coming your way 🙏🙏🙏🙏. Will be there with you in spirit. Yes the scanxiety is so real. I was trying to sift through your plan. I assume you had Y90 To liver and SBRT to lung already? Yay - no uptake in liver!!!!! Awesome!! Hoping it is same/stable now and positive results for lung. And yes I had uptake too where I am getting faslodex and xgeva shots -inflammation.
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Dee & BlueGirl - sending some soothing beverages today to deal with scanxiety & best wishes for tomorrow being smooth sailing & good (and fast!) results
I have some good news: my liver function tests are normal for the first time since being dx'd with liver mets in Feb! Liver is healing! My albumin is still low but is slowly climbing with every test.
On the negative side, my neutrophils tanked even though I'm 13 days past last taxol, 7 days past last Ipatasertib/placebo & have been using Grastofil twice a week after taxol. I had ongoing problems keeping my counts up in 2018 as well so I'm not too surprised. I have wimpy bone marrow. MO prescribed an additional Grastofil shot today & I'll try to eat lots of good protein today & then tomorrow we'll retest to see if I can get my treatment.
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Dee and BlueGirl, thinking of you both and crossing fingers for stable or shrinkage in those scans.
Saulius and Sandra, congratulations for good news!! Very happy for you and always keep sharing it.
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Dee and BlueGirl, praying for good scan results. Nicole, praying your mouth pain and discomfort goes away fast!
Good news for me, dentist said teeth and gums look great! Pain was probably from a loose filling so he removed and replaced it all without novocaine. I was in and out and home in 45 minutes. So relieved! Thanks for your prayers!
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IntoLight, so good to hear this wonderful news for you!
Moth, sorry for the tanked neutrophils, but, such good news about your liver enzymes!
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Dee praying all is still shrinking!!!! Intothelight so happy for you!!!!! AMEN!!!
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BlueGirlRed- sending prayers for CT scan tomorrow. There with you in spirit. 🙏 good results!!
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good news IntoLight! Not often we have a simple answer to a problem. Hope you are feeling well. Praying for strength for you
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Praying for good scan results, girls. 💞
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Grannax,
Did you get any more definitive info from your MO or your IR? Or are you on the same treatment until the three month MRI? Hope all is okay.
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Dear Dee, I wish you the best for your scans (as far as you wrote there's no indication they can be worse - and there's hope they can be VERY GOOD!:). Scanxiety sucks. If results on Friday, this will be pretty short... Hugs, Saulius
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Bev Jen No,
She she hasn't gotten back to me. I see her upon September 1. Maybe we will discuss. it then. Yes, I'm still on Faslodex only. I think I will be on it till my3 month MRI.
I'm okay. From both of my docs, I get that there's nothing to do until we see the three month scans. I'm hoping the ones in my right lobe will be even smaller or gone by then. The controversial ones in my left lobe are the question mark. They are the untreated ones.💞
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Grannax,
Well, hang in there, then. Hopefully the right lobe lesions decrease in size, and the left lobe ones are either stable or also decrease by the three month scans. Good luck.
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Hi all,
Prodigal participant here. My schedule always seems crazy and I tell myself I am being prudent trying to limit screen time. Anyway, thanks for your indulgence as I circle back.
I read back a few pages and it it looks like Nicole and Alabama Dee were having a rocky time lately. I hope you are better.
Once again, I find myself at a turning point in treatment and hope to call on the collective wisdom of the group. I last updated my saga back in May, so here is my Hx in a nutshell:
I originally (for MBC) got THP. Progressed on H&P after about 15 months. Then I got Kadcyla on a clinical trial. Had fairly ugly liver values (AST, ALT and Alk Phos) on Kadcyla, plus lost @ 1/2 the right lobe, became pseudocirrhotic and had a portal vein thrombosis on Kadcyla (but it bounced back once I got off the Kadcyla). Kicked off for progression after 8 months - a single lesion not even too big. Did another clinical trial (Herceptin, navelbine and Avelumab). It did nothing. Lesion continued to grow. While on that trial (June and July), we discovered a brain met which we zapped with CyberKnife (in late July). So now I have to switch treatments. Looking at all options. Including radiation. Systemic options are Enhertu and Tucatinib/herceptine/capecitaytobine.
* I know I have asked before, but anyone have words of wisdom about CyberKnife? Especially how big any liver tumors were when Tx'ed. (I am wondering if mine is too big now. It's over 5 cm on largest measure)
* I have read about proton therapy for liver. I doubt my insurance would pay for it, but ... anyone had it? Expertise to share?
* I'll have to have systemic therapy. A fellow MBC'er said she had heard that Enhertu was causing some of the same liver damage as Kacyl did. That for a certain % of patients, the ADC's just do that. They don't seem to be able to figure out ahead of time who is susceptible. I don't know how well documented that is but I'd rather not go back there if I can avoid it. Anyone else run across this?
* I even floated the idea of a quick and limited hit of Taxane to reduce the size of my tumor. MO did not comment and we have not discussed. It worked like a charm in the past.
The wisdom of this group is amazing. Thank you for sharing your insight so generously.
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Sorry I am of no help to you lumpie
So NO CHEMO TODAY....she said she doesn't want to risk it with my mouth, which is still really bad. The pain is so bad that sometimes I even feel it through the magic mouthwash. Since I won't do painkillers but I clearly need something (my blood pressure was 97 over 144 she said that is bc I am in pain) she is called in Gabepentin. My husband asked her to give me something for stress...because the pain is seriously stressing out my whole being. She called in something called Atavan? If anyone has any experience with that please tell me...I am nervous to take it...but my husband literally is gonna make me. She also said going forward once this is cleared and the 14 days of the Valtrex is done she wants me on to stay on it at a lower dose for maintenance ...I am so happy she said that!!!
I just ordered this thing called chemo mouth...its a device you put in your mouth during chemo its ice cold to prevent sores...I definitely need something.
Nicole
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Nicole,
I took Ativan/lorazapam when I was on my original chemo 2003-2004. I did used to knock me out, but I had no other side effects that I remember. It is an anti-anxiety drug. If I remember correctly, they actually had me take it before chemo, which was good because I was able to take a little nap during the infusion (I got three drugs in succession, so my infusion sessions were pretty long.) Glad that your doc is letting you stay on the valtrex on a low dose -- that's probably a good thing considering your history with mouth sores, etc.
Lumpie,
Re your liver lesion -- you may have options other than cyber knife. Have you looked at the thread that deals with Y90 and other liver treatments? What comes to mind to me (although I don't know the size restrictions) are the following possibilities: cryoablation, microwave ablation, SBRT (which is a kind of cyber knife, I think...) I will PM you the names of some docs to contact.
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Nicole: Hope the mouth issues get better. (Sounds awful.) Glad you got a break on chemo today.
BevJen: I truncated my history. I have been down the ablation path twice. Once, it failed (on table, incised and they couldn't get it owing to location). The other time, it was deemed inappropriate owing to location (different location by then). And the lesion is still in the same (2nd) location, only bigger. I do think it is a promising option and would encourage others to consider it. I talked with IR about Y90. I am keeping it on the down-the-road menu, but I was satisfied after my last round of consults that it offered no benefit over CyberKnife, was higher risk and had a worse side effect profile. I do think it is an option with higher tumor burden, so keeping it in my proverbial "back pocket." Of the external radiation options, I am pretty convinced that CyberKnife and possibly proton are the best options - in general and esp. for my situations. But I am keeping an open mind, if I learn about new techniques.
I am trying not to think about "what if" they had ablated or irradiated the tumor(s) when they were first identified. Maybe I wouldn't be in this mess. It's hard not to go there....
Thanks!
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Lumpie,
I sent you some info before I saw this. Proton might be the best, but it's difficult to get covered by insurance (from what I understand.) SBRT (see my PM) is also very targeted, so that might be an option. Good luck.
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Lumpie
SBRT(cyber knife) has to do with the number of Tumors/lesions and the size because of the fractions of radiation. Is yours just 1 tumor at 5 cm? Have you consulted a RO? This is a good article about ablative radiation.
https://www.morningstar.com/news/pr-newswire/20200...Have you talked to an IR? They can suggest other local options to the liver like cryoablation, chemo embolization and y-90.
I was a SBRT candidate at the beginning of my Metastatic journey with ONLY 2 tumors in the right liver lobe that were around 4cm combined. Once their size increased and number of small ones appeared I could not get SBRT to the Liver. Because SBRT was off the table due to waiting for a systemic treatment to work, I had y-90 to 2 growing tumors in the right lobe and bland embolization to a 4cm left liver lobe tumor. It worked!
I did get SBRT to the single small lung lesion.
Whack-a-Mole!! I find out tomorrow if my systemic meds and the SBRT are working.Hope this helps
Dee
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Nicole, how smart of your husband to request the doctor prescribe something for you for stress. I've taken Ativan before during chemo and love it's calming effect. There are various doses. For me, not dealing with the physical pain you currently have, .5 mg worked well. It also comes in 1 mg and 2 mg tablets and the tablets may be prescribed to take every six hours or as needed. I believe that varies. Side effects are minimal. I sometimes get a mild headache (which Tylenol takes care of) the following day after taking Ativan, but it's worth it to me to get the anxiety relief. I feel tired the day after taking Ativan but a mid day nap takes care of that.
These side effects can be minimized by taking only as much dosage as you need, and one time when I was prescribed 1 mg tablets, I scored them in half.
I keep a small stash of Ativan tucked away to use every so often when a massive sensory overload (like a family dispute with a sibling) grabs hold of me and doesn't let go. My doctor won't give me a regular prescription since it can be addicting. For daily use I take a small dose of a non addicting anti anxiety med called Buspar which definitely helps me cope. But every so often, life rears it's complicated head and I will pop an Ativan which for me does wonders.
I am wishing you the very best for your mouth sores. The chemo mouth device sounds like a really good idea and I truly hope it helps, too, along with the Ativan.
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Ladies...I am nervous about this gabapentin.... I am reading horrible things on line
. as it is I don't like "feeling loopy"....and I am reading about people getting high on this ...having convulsions when they stop it. that it is addictive???...all sorts of negative stuff Im scared now. MrsDivine...my Ativan is 0.5 it says 1 pill every 6 hours as needed .0 -
I'm on gabapentin and have no problems with it. Also have used ativan in past with no issue.
I would not hesitate to use them when needed & it sounds like you do.
Gabapentin on its own is usually used for neuropathic pain but as an adjuvant with ibuprofen or acetaminophen it works on all sorts of pain. My pain lectures last fall said they weren't sure of mechanism but for chronic/persistent we try this first (instead of reaching right away for opioids)
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Nicolerod
I took gabapentin after my original chemo for fibromyalgia-like symptoms. It worked great at 300 mg and I felt better immediately. That lasted a couple months. Then I became resistant to it- upped the dosage and still had pain. My main side effect was headaches and I did get a little loopy on the higher doses. I quit using it after a year and did not have any withdrawal.
If you are only using it short term to get through the nerve pain of shingles, then I would give it a try. Please talk to your doctor or pharmacist about your concerns and get peace. It can be a helpful drug!
Dee
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I got my chemo today because in less than 24h my neutrophils went from 0.9 to 17.7
I kept squinting at my phone thinking the lab had started to report to two decimal places and I was misreading where the decimal was but nope. 😅
I had an extra filgrastim shot yesterday, ate lots of vegan protein and took a short nap. I also ate a bag of potato chips, ooops. Maybe that was the secret trick? In 2018 I was neutropenic and for a while doing daily blood work and I never responded like that to the granulocyte stimulating shots. They always barely budged much to everyone's frustration, so this is a weird but good surprise
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Nicole- i am in a similar boat as Sadiesservant. I have been taking ativan (1 mg) 2x/ day for about 1.5 years. As with anything, when you first start, its new to your system. Now I use it to manage anxiety daily and it has no bad side effects for me. Only good. More relaxed, not so much of the highs and lows. And yes, you can snap them.in 1/2 for a lower dosage. I also take buspirone to help with the depression. Again, no bad effects, just a little fuzzy the first hour. I am not big on being medicated but I am HUGE on enjoying what I can of this life. I try to exercise as much as I can hking/walking, gardening etc. I think if I didn't have the anti-anxiety or antidepressant meds to give me a boost, I would be spending my life in bed or in front of the TV. I get fatigued and weak on my therapy and I am trying to stay as healthy as possible. That’s not always so easy as I often feel awful when I open my eyes first thing in the morning. There is the physical drain, the mental drain, and the emotional drain. Sometimes, at least for me, I need help -just getting up in the morning.....and then there is the rest of the day. I rely on my faith in God for strength and perseverance and also count on some help from my doctors and some meds.
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Thanks BevJen - and thanks for your message.
AlabamaDee- yes. Just one tumor and it is approx 5 cm on widest diameter. Yes. I have talked with the RO and I am talking with him again but he is out until about a week from now. (Basically looking for a go-or-no-go from him.) I have also talked with IR. Ablation has been ruled out. We have already tried it twice. Can't do owing to location. Y90 is an option but after meeting with IR, it was higher risk, less convenient, not more promising and had worse side effects. Glad it is on the menu but I think I am going to exhaust other options first. It is reassuring to hear that it worked for you! Sounds like you had SBRT recently. I am looking forward to your update. Fingers crossed. And thanks for the Morningstar link. That's great.
So true! It is wack-a-mole! I just hope I don't run outta wackers! I was really disappointed and surprised when that last chemo did nothing. I've never had one not work at all....even briefly....
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moth
That’s fantastic news especially when you had stubborn neutrophils. Happy dance!
Dee
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