How are people with liver mets doing?
Comments
-
grannex- I feel for you. I’m a zebra when it comes to brain Mets. I will think of you on the 30th as I think of you every day. The AVF is crazy but makes me know just how strong your liver is. That’s how I am going to view it.
The whole planning thing is hard. I don’t plan. I can only live day to day and that even changes. Sorry those around you don’t get that.
As far as delicate is concerned, it might not be the first choice after y90 because it can sometimes be hard on the liver. I did however resume use of this drug quite successfully after my liver resection after about 1 werk. I know that surgery snd xx Y 90 aren’t the same thing, but I would guess that it will be possible to usecc c after f ST one healing time. Of course, I’m not a doctor or an IR so who knows.
FWIW, I was 5 years NED on xeloda. It can have harsh SE but it can also work wonders. hugs
0 -
Nicole, when I was on the trial drug I had a blockage issue that lasted 8-9 days. I tried everything. The only thing that worked after days and days of discomfort and fear I had a vowel obstruction was milk of magnesia, which is made for constipation. May be worth trying it rather than relying on the magnesium supplements to work, indirectly. Milk of magnesium floods the bowels with water like a water slide and helps with bowel “paralysis” and doesn’t require your body to metabolize and process the magnesium.
0 -
Sorry ,...I think you guys misunderstood...I did wind up going this morning...but it was very very very hard to get out..and hard and big. Then about an hour later I went a little diarrhea...I think that may have been from the 8 oz of prune juice I had at 6am (before the big hard poop)... I did start a thread about it because I didn't want to hijack here...I am only 3 days in on the miralax...and I just got the prunes.
JFL I didn't know that about milk of magnesia....I thought its just like taking the oral magnesium citrate supplements...looks like I'm gonna have to go that too. I hope thats ok to take with the miralax?
0 -
Nicole, may skill, experience, and compassion guide the hands of your surgical team today, as well as your nurses as you recover. Glad to hear that you pooped!
All the best,
Katty
0 -
Cross-posting this:
Update on my PET - I haven't received the results or radiology report yet but my DH did review the scan himself as he has access to my results. As suspected, PET lit up "a lot" in my liver and the lesions have grown a bit. Have no idea what is next, in additional to the COC protocol. Maybe Gemzar? I will also look into 2nd Y90.0 -
JFL, as much as we try to prepare ourselves for news of progression, it's still a shock. You sound amazingly composed, though. Sending up prayers that the new treatment plan stops those nasty liver mets in their track. Hugs ~ JL
0 -
I need some thoughts on this. My MO is away on sabbatical until February so I have had a number of fill in MO's in the interim. Before she left she ordered a liver biopsy to check to see whether i was still ER/PR+ her2-. A month after she left the fill in MO canceled the biopsy saying that it wouldn't make any difference. So I went on Xeloda. 6 cycles of it and my liver tumours grew & another one joined the party for a total of 3.
Another fill in MO now wants me to go on Halaven and I am questioning this as I worry that this will make me ineligible for trials but also if xeloda failed how do I know that we're not just wasting time with halaven? I know that there are no guarantees with these treatments, but I do wonder if I just didn't do anything until my MO comes back in Feb? 2 ½ months without any treatment? hmmmm.... all your thoughts please.
0 -
Hey J, sorry about your results. I was really hoping they'd be different.
Have you thought about Verzenio? I dont think you ever used it. Also dont forget methotrexate as an easier option for chemo. I read papers of people being on it successfully for years in combo with some other chemos.
Keep us posted.
Daniel
0 -
JFL- So sorry to hear of your progression. Praying for you and your docs as you navigate the next line of therapy.
Nicole- Thinking of you and your surgery.
GG27- You are in a quandary with the fill-in MO's. I would press for a biopsy before starting Halaven. With the Xeloda failing, I would want those biopsy results. Ask (strongly ask) for the biopsy again. I would not want to stop treatment until Feb.
0 -
GG27, is it possible to comply with original MO's order for new bx? Just seems she knows you and your cancer the best. Have you had F1 to check for mutations yet? If so and if it has been a while, can you get that ordered on bx?
0 -
JFL, can you confirm the PET results with a liver MRI? My MO said sometimes PET scans can show inflammation.
0 -
Sandibeach & Candy
I have not had F1 yet, my original MO wanted to save it for later when we really need it as she knows I don't have insurance & F1 rarely ever covers canadians, it's $5,000 which I can scrape up but was hoping to put it off for a while.
I need an MO to reorder the biopsy as the fill in one canceled the first one. Oh I wish I had stood up to her then, she's a very highly respected senior MO at BC Cancer.
I wouldn't want to go without treatment til Feb however, I have very strong reactions to new drugs & I'm afraid that it will have bad SE's for me. When I went on Alpelisib, I had projectile vomiting, non stop diarrhea and a horrible rash for 3 days after taking only 1 dose.
thanks for your input. I'll post what comes of my phone calls.
0 -
JFL,
I second Sandibeach about the MRI. The interventional radiologist told me that the best test to show the liver is an MRI. I recently had a CT and he said that of my 5 or 6 remaining liver lesions, he could only see 2 on the CT. So again, I wish these imaging tests would be more reliable, but you could possibly get more info with a liver MRI. And if you want to go the Y90 route again, you may have to get one.
Thinking of you.
0 -
GG27, I hope your call goes well. I would say that if there is one thing I have learned having mets for 5 years and seeing many come and go is that no treatment should be “saved for a rainy day". You have to go with what is best for you to take now and don't worry about trial eligibility, etc. Along the same vein, waiting until your MO comes back in Feb is very risky and likely not what your MO would want you to do in her absence. Being on a less than ideal treatment is better than being on nothing. My two cents. Praying everything comes together for you.
All, thanks for the supportive messages. Sandibeach and BevJen, if I ever needed to better interpret a questionable scan, I would get an MRI. Unfortunately, this is a case of overwhelming evidence of progression. The volume of my liver tumors has always been quite large since day 1 with both diffuse mets throughout my liver and measurable tumors. Progression always shows up pretty indisputably on the PET-CT for me. I may not see everything on the PET-CT, but I am certainly seeing more than enough liver involvement to confirm progression.
.
0 -
JFL. I agree. I only had PET and my IR did not need a MRI. Three weeks later when he did the mapping, he saw even more mets than was seen on the PET. I know that's not encouraging.
So, you and I may be the first two on BCO to have our second set of y90s. I wish the best for both of us. I know it's the next right thing for me to do, but I'm still anxious. I'll be glad when Wednesday is over and I'm on the other side of it. . I know I'll have less anxiety when it's over.
What's the next step for you? I guess go to your MO for results. Do you feel comfortable talking to her about y90 or will you talk to your IR first? 💞
0 -
Grannax, my IR uses some other more sensitive scans (SPECT and possibly something else) and told me he saw a lot more mets on those scans than the PET-CT when he did my mapping the first Y90 go round. I know what you mean about feeling uneasy about #2. I, too, feel worried about how much my liver can take. However, I do know that some colon mets and liver cancer patients will have 3 or 4 Y90s. I will talk to MO before IR. My MO mentioned another Y90 the last time I was considering what treatment to start next. I am not sure if he will recommend it as his #1 choice but he is definitely thinking about Y90 and supports it. My MO will probably have a few possible options for me - I suspect Gemzar, Piqray or testosterone plus possibly Y90 with any of thise
0 -
Grannax2 , good luck with your y90 procedure. Where do you go for this procedure? Do you have to stop the systemic therapy to get y-90? Please keep us posted about how you are doing when you feel fit enough to do so.
I asked my MO about a consult with the intervention radiologist for my liver mets - 3 have grown to 5 lesions and I am getting worried. She wants to wait and see if my present chemo will work before referring me to an intervention radiologist.
0 -
S3K5,
I saw your note about your MO wanting you to wait for an IR consult. You might want to look at the other thread that deals with Y90 and other liver treatments. My personal experience is that often, MOs are not crazy about localized treatments. So you might want to go and see the IR anyway to see what options could be in your future if you decided to proceed with a localized liver treatment. There are a lot more besides Y90.
0 -
Grannax, I'll be thinking of you tomorrow and sending chicken-fried good vibes smothered in cream gravy from Houston. With pillowly biscuits.
xoxo
Katty
0 -
GG27, I am in a limbo too. Have liver mets, failed on TDMI (Kadcyla) xeloda, capecetabine, navorelbine, all the taxpols and was due to start the TULIP SYD 985 study based on my liver biopsy (er-Her2+) but the lab in Holland clearly shows my tumor as HER2-. So which is it? Reading up on the frequency of intratumor heterogeneity and it seems to be more prevalent than they ever realized.
In the meantime started on Halaven but they cancelled my second infusion due to worsened neuropathy. So now back in limbo land waiting for the mysterious multidiciplinary group to decide my next steps.
Today I dedided to "work at home" but have instead been lolling around worryin about this. Maybe I needed to
best wishes to all from Stockholm<
0 -
Katty When I am out tomorrow, I'm sure ill be dreaming about chicken fried chicken and biscuits. Lol
JFL. Maybe that's the same type scan my IR used in my mapping procedure.
S3K5 My IR is in Dallas, Dr. Van Meter. Yes, this time I won't be on any systemic TX except for Faslodex. Good advice from BevJen. I took the bull by the horns this time and contacted my IR prior to seeing my MO. I've been his patient for almost three years.
arolsson Limbo is tough. I've been there so many times, I much prefer a plan. But it sounds like you are well informed about your situation. Let us know what you find out.
Only one more sleep, as my grandchildren say. I can do this.💞
0 -
JFL so sorry about the progression. I will post more to you in COC thread.
Thanks for all your well wishes... My surgery went well...but when we got home had to call 911 and go to ER...apparently the CO2 they filled my belly with they didn't get enough out..and I was in horrific pain. We left the hospital late at night. I was just sobbing in pain until about 3am finally dozed off for about 2 hours..today is a little better not excruciating but still very bad. I didn't take any pain pills..I couldn't especially after the constipation bout I had last week. My entire torso, shoulders, neck, back, front, lower and upper abdomen even my chest but especially the diaphragm is all in pain.I cannot take a deep breath its just horrible. I have been drinking prune juice taking miralax 2 times a day and eating prunes..I went today but I am keeping up the regiment for now.
0 -
Hi all,
Hope you are doing well and i wish courage to continue the battle to prove that MBC is a chronic disease.
My mother has MBC on bones since 2013 and liver since last March.
1.One of the things we are discussing is her protein intake. We are thinking about Whey protein but I am a bit cautious about the implications that this can have on the liver.
2. She is also struggling with Low platelets due to Abraxane - has anyone faced the same problem? what did you to do to mitigate it?
Does anyone have a view on this?
Thanks so much
0 -
BevJen , thanks for your suggestion. I will contact an IR outside of MSK for a consult.
NicoleRod, sorry to learn about your extreme pain. I was told that opiates can cause constipation but if you are in so much pain, may be a Tramadol (ER) would help? I am in the same boat as you regarding constipation and have to take Miralax every other day, which helps.
0 -
S3K5,
I have seen on these boards (and elsewhere) that sometimes MSK is a little bit funny about sending folks to IR consults -- even moreso than other places (I'm being seen at Hopkins and I just had to say -- I'm doing this.) And it's a pain because you have to gather all of your records yourself, but you can get disks of your scans and your records should be on your patient portal.
I see that you are in NJ -- I recently watched a webinar where one of the participants was an MO from MD Anderson at Cooper, located in Camden. If you are being treated at MSK, you may want an equally prestigious place to get your consult -- not sure if Camden is possible for you, but it may be worth a shot.
Good luck.
0 -
Oh Nicole, I hate to hear that you were in such terrible pain and hope that it has subsided by now.
Xoxo Katty
0 -
GG27, have you looked into POG yet as an alternative to F1? I had it done as part of a trial two years ago.
http://www.bccancer.bc.ca/about/news-stories/stori...(pog)-q-a
0 -
Hi all. I found out the results of my liver biopsy today. The cancer is ER+ again! My original breast tumor was strongly ER+, but when I was diagnosed stage 4, the liver met showed TNBC. Curious if anyone else has bounced from ER+ to TNBC and back to ER+?
I have a feeling this will open more treatment options for me, but not sure what the plan will be yet. I'm all ears if anyone has any experience with this. I've been focused on TNBC options for the past almost 2 years.
Posting this here since I know this group has a wealth of knowledge, plus they are liver mets. Not sure if there is another forum for this?
0 -
Thriving...wow...that gives me hope that if mine ever do go TNBC..I can go back to ER+....although my first line of ER+ hormone treatment only worked for 4 months..LOL... anyway..I think this is great news for you! I wish you the best on your next line of treatment.
Thanks Katty
it has been horrible. My husband is splurging tomorrow and having the girl that gave me a massage at my cancer center a month ago come to our house (they can do house visits) and though I cannot lay down..she is going to come tomorrow to try and relax my neck/shoulders and upper back while I sit up...my body is all in pain from tensing from the pain 0 -
Why don’t oncologists support local treatments with IR??
0
