How are people with liver mets doing?
Comments
-
Thanks SeeQ. I wonder how she is doing. Anyone in contact with her to give us a report? Hope she is enjoying her family and not in pain.
0 -
Nicole had emailed her, I think. You might try PMing her.
0 -
Hi all,
Did anyone doing SBRT (cyberknife) develop severe GERD and frequent burping after completion of therapy?
Just wondering how I can help my mum. Thanks
0 -
Candy!!!! YAY!!!!! I am sooooo happy!!!
Scans tomorrow and Tuesday results Wed....please I need PRAYERS!!!! I don't believe the Trodelvy is working but I am PRAYING THAT I AM WRONG!!!
Thanks Sisters!!!
PS: I hope the MODS are working on the site its PAINFULLY SLOWWWWW
0 -
Nicolerod - In your pocket for scan day. Prayers and positive vibes on their way.
0 -
Nicole—in your pocket too! Hoping for good news even if your spidey-sense says otherwise.
0 -
Nicole--- Pocket duty with Peanut M&M's (if you are not allergic). I will be looking for your post on Wed on the results. You got this, girl.
0 -
You are in my prayers Nicole. And yes, this website isn't working well for me either.
0 -
Will be thinking of you Nicole!
0 -
b-a-p,
how are you doing? anything new going on or any new scans?
I am still scheduled to see the liver specialist on March 25. They couldn't move up my appointment. By the time I see this person, everything could have changed -- it's ridiculous.
0 -
Sending good thoughts Nicole. And yes... the site is painful these days. It's really cutting down on the number of posts as you practically have time to go and make a cup of coffee while waiting for some threads to open. And it seems somewhat random, although it might be the threads with a lot of posts... not sure.
0 -
Hey Bev,
I've been thinking of you too. I'm hoping the liver specialist gives you some insight so I can get some insight lol I'm still waiting on a GI appointment to check on the varicies and if they've come back. I've been having a lot of anxiety lately about it because I feel like I fell through the cracks and because I almost died and it happened while I was in the hospital, I'm worried about how I'd fair at home.. My MO thought i was being followed by them, which I wasn't . Then the new referral got lost, and now I'm waitlisted. I feel like a ticking time bomb. My family and I are taking a road trip in June as long as things are stable and I'm hoping to have that all taken care of by then.
I have good days and bad days. I hate the ascites so much and hope that one day they'll magically dry up. I love eating and drinking so much and the ascites just makes it hard.. I'm fatigued, but I'm hanging in. I imagine we will be discussing booking another PET scan at the end of the month at my next appointment since I'm currently on cycle 5. Fingers crossed there.
0 -
b-a-p,
Wow, sorry that things got so messed up with appointments, following you, etc. I think that with medicine, as with a lot of things in life, that you have to be the squeaky wheel, and even then, you don't always get what you need.
I had a Telehealth visit today with my MO, and I reminded her that I have this appointment with the liver specialist on March 25. She said to follow through with it (I was planning to) but she also added that they usually see pseudocirrhosis when there has been a rapid response to treatment. That was certainly your case as you described it (not so much with me).
I will be sure to let you know what I find out, if anything. My liver numbers in my bloodwork, although elevated, are not horrible, and they didn't give the specialist alarm bells to get me in sooner. So we'll see what she has to say on the 25th.
Sorry about the ascites. I am not dealing with that at all, but I can imagine that it's very tough. My brother passed away from liver cancer (long story) and he had both varices and ascites, and both were very tough to deal with.
0 -
Yeah that is what they have been telling me . that the PC is a result of a rapid response to treatment. Did she say anything else in that regard, in how it affects patients long term? My liver numbers are good. I think my last appointment my AST was at 55 which is the upper limit of normal and everything else was fine in terms of function. I've been having itching lately but I don't know if it's a dry skin thing and the fact I can't hold much liquid without expanding and feeling uncomfortable, or if it's a consequence of liver issues. I'm not certain that it is the liver with normal enzymes. Perhaps a little psychosomatic as well. Who knows. It's just tiring to deal with it all at 34. I miss being my active self.
You really have to be your best advocate in medicine , especially when your life is on the line. I know for a fact that if I hadn't pushed for Ibrance, I'd likely not be here now , or i'd be progressing way faster. I try to be mindful of that fact. I'm still here. I'm still with my husband and son.
I'm sorry to hear about your Brother. It's all so hard.
0 -
b-a-p,
My MO didn't have much else to offer regarding pseudocirrhosis. This specialization in medicine drives me crazy -- you can only get so much of an answer from one specialist before you have to go to another. I'm currently trying to schedule a consult with a doc from Memorial Sloan Kettering in NYC to talk about my Her2 mutations and her suggestions for further treatment, at the recommendation of my MO -- and my MO is supposed to be among the top 50 MOs in the U.S. But I have to go to someone else to examine further pieces of the puzzle -- it's all so difficult. As you said, though, you have to self advocate or you will get lost in the shuffle on all of this stuff. You are a classic case of this for sure.
I'd buy some Cerave lotion and try that or go to see a dermatologist about that itching. Hopefully it's just dry skin and unrelated. Good luck.
0 -
I’ve been trying to catch upon this thread. BAP, BevJen, Nicole, I hope today was an ok day for you. Or maybe a better than ok day??
I’ve posted about my hospitalization and surgery on Mel’s living room thread and the Bone Mets thread, so if you haven’t already seen it here’s the short version. I had severe hip and leg pain (left side only) all throughJanuary, with multiple doctors running tests and prescribing various meds. Finally, in early Feb, a CT showed a lesion at L1, (bone scan was clear 😳) which was compressing my spinal cord. So, admitted to hospital, surgery to excise spinal lesion and placement of stabilizing rods & pins. Went home after a week. Tough couple of weeks at home which slowly improved with pain meds I had been afraid of. Now at 4 weeks post-op, I’ve started rads (5) to clean up where the lesion was excised. I hope the rads do their jobs. Chemo will start April 4, gem carbo. I hope it’s not too late to effect my liver Mets, which progressed with my December MRI. I found out in early Jan that I was now triple neg acc to the liver Mets, but surprisingly the spine lesion came back as ER+. I was set to start a clinical trial for triple neg but now that’s out. I’m staying with the trial doc as my new MO. We spent a lot of time together in Feb and I feel confident that he’s right for me right now. He made a lot of things come together with my being admitted and having surgery , and fast. I’m not afraid of pain meds anymore but have a couple decent days with no need but I still take one for sleeping.
0 -
Rosie,
Good to hear from you, and I'm sorry that you've had so much going on. I had read your story on the other threads but didn't focus on the fact that it took them a bit to figure out what was going on with you. That was my same situation last year when at first they thought I had an issue with my back, and then realized that it was my femurs. All of the imaging that we have done, and docs still cannot identify this stuff. Amazing.
I did rads after my surgery as well to clean up stuff ( a bit more than you) and those seemed to be effective for me, so I wish you the same. Also, glad that you are able to use the pain meds. I have a tough time with opioid based pain killers, and assume that's what they are giving you, so if they help, I'd say go for it, especially to allow you to get some rest. Rest is a great curative.
Hope the chemo is effective and not too harsh. Best to you as you recover from your surgery and hopefully hit those liver mets with that chemo.
0 -
Ok ladies. So ..... Even though I still have pain in or should I say ..around my T3....the T3 and the C7 is all resolved...so the rads back in Aug 2021 worked. There is NO new growth anywhere. The 1 tumor that I had Y90 to in July and she didnt use a full dose (she didn't want me to have side effects like I had the first time if you all remember). Well on my scans in Nov 2021 that 1 tumor did light up...well it is still lighting up but it only grew very very minimally she said literally "millimeters" ... SO with that said...she wants to stay on the Trodelvy. David and I agreed. She also wants my IR in Wash. DC to look at the scan and see if we CAN/SHOULD re-do the Y90 to it. So I am waiting to hear about that and probably will not hear for a week or so.
Overall we are happy.. My MO agreed that the TUDCA is definitely helping my liver numbers and she admitted that she doesn't know much about supplements but this one seems to be doing something. We (David and I) also believe the 3 months of Ivermectin I was taking also has helped. I also told her that I stopped that and started Itracononzole...and only started at 1/2 dose 200mg a day for 4 days on 2 weeks off. She said ok as long as liver numbers stay good. I am working up to the 400mg...will do that for a few months is numbers are good if not I will go back to an increased dose of Ivermectin of 25 mg. (I was at 15mg.)
For those that know about Fenbendazole....the 222mg was NOT high enough and thats why it was not working for many. It needs to be 2000mg a day.
Anyway I am praying for this Trodelvy to keep working!!! Thank you all for sticking with me and praying for me. I have yet to have a treatment work for more than 3 months..so I am hoping this will be the 1st.
Love to you all.
0 -
Nicole,
Great news. It seems that your cancer radar is off (this is a good thing) because in the past you were always pretty accurate as to when things were going sideways. This may be your treatment! Yay!
0 -
That is great news Nicole, thanks for posting it.
0 -
Awesome news Nicole - I'm glad you get to stay on the Trodelvy and that things are working well for you! Long may it continue!
0 -
Thank you all!!!
0 -
Congrats Nicole! Great news!
BevJen, thx for your response. Yes, it sounds like we both had a slow route to diagnosing our source of pain. I’m glad you got yourself into a good rehab facility and I hope you’ve recovered from the femur surgery. I’m sorry I’ve lost track of how you’re doing recently. I hope it’s well!
0 -
Rosie,
Sorry about your hip and leg pain and the subsequent spinal surgery and recovery.
In looking at your treatment profile, I'm wondering why they removed lymph nodes when they already knew you were metastatic? Also, whole breast radiation?
Hoping you will have a smooth and rapid recovery.
Hugs, Susan
0 -
Rosie,
I'm doing okay and have fully recovered from the two surgeries (within a week of each other). Still walking with a cane most of the time, but I think more out of fear that someone will bump me rather than pure need. Currently playing around with treatments. My doc wants me to go to Memorial Sloan Kettering to see an expert in Her2 mutations to help direct my next treatments. I don't deal well with uncertainty, so this is difficult for me.
All in good time....
0 -
Dear Nicole, I am, like others, so happy for your scans. Great that you can stay on this new wonder drug, and that you have will to review Y90 option.
Dear BevJen, uh, I am so sorry about your Brother, I have no words. My friend died of Glioblastoma 2 weeks ago - he was 43, left a wife and 2 beautiful children:/ I can understand you so well regarding uncertainty - probably the scariest thing for me too, and this disease is so much about uncertainty:/ The her2mut could be a good target though (depending on specific mutations) and I am sure they can find something for you. I just don't remember (sorryyyyyyyyyy) how you found out about her2mut - was it one of these F1/G360/Tempus tests?
Dear BAP, it so nice to hear from you - hang in there, ah god, that ascites gone would make your life so much easier...
I noticed that when the interface of this site was updated, people stopped posting for some time. Please, everyone who is on this thread, write how are you?
Hugs, Saulius
0 -
Saulius,
So good to hear from you. I hope all is well with you and your family and that you are staying safe.
My mutations were found on genomic testing -- I had both Foundation One and Tempus, showing over 20 mutations. The ones they are looking at are both Her2 mutations, so I am still showing as Her2- but they are finding that some drugs for Her2+ may be helpful in that situation. That's what my doctor is looking at now.
Thanks for your thoughts about my brother. It wasn't recent -- he passed in 2015 -- but I appreciate the thoughts just the same.
0 -
Wonderful Nicole!!!! Woohoo !!!!!
0 -
SusaninSF, I was dx MBC in 2019 with 2 liver Mets about 1 cm each. Ibrance/Letrozole for a year got me to where the breast tumor was not showing on scans, the liver Mets were almost gone and axillary tumors were not mentioned anymore. My MO offered me a consult with a breast surgeon and RO for a lumpectomy and radiation. BS was all for it, being a surgeon, and said I was now being treated with curative intent. She took one axillary node during the surgery and the pathology (during surgery) said it was not malignant (and a lot of other info) so she didn’t take any others. The breast tumor was removed with clear margins. RO strongly recommended breast/axillary/clavicle radiation because the tumor was grade 3, and said without radiation it had 30-40% chance of coming back. I had the radiation, and continued on Ibrance/Letrozole. A year later my new MO asked if I’d want to have a liver ablation to get rid of residual liver Mets. I met with a different RO and he said I was definitely a candidate, so I went ahead with it. It was not difficult at all. After that I had no evidence of disease for almost a year when new liver Mets showed up, being ER- when I had been ER+ previously. So I had 3 pretty easy years on I/L until the new liver Mets being ER- and spine met showed up, which is ER+. Now moving to gem/carbo in a couple weeks. Curative intent was good while it lasted, and I don’t regret giving it a try
0 -
rosie24,
Thanks so much for explaining this to me. So they thought you were Oligometasatic? There have been two women in our MBC support group who were Oligo. One left our group and joined the early-stage group, the other has stayed with our mets group. I agree with you that it is definitely worth the effort to try for a cure. Sorry you had progressions with mixed oncotypes.
Hope the Gem/Carbo works well with no side effects!
Hugs, Susan
0
