Oldie with new Name

[tammymarie1971]

Hi ladies,.
I have been coming to this site for years as my journey has moved along. Have not posted in forever. Anyway I was dx'd at 30 while expecting #4. 5cm tumor no lymphs, did mast. A/C, then tamox. for about a year. This was 2001-2002. Early 2004 liver met. Did herceptin and taxol with resection followed by herceptin and taxol 3 more rounds, 6 mos later spots found in spine, but liver looked good. Changed oncs started zometa and herceptin, this is 2005, did well more hormonals, vinorelbine, Xeloda, little ups and downs, but mostly good QOL! Fast forward 2 years Christmas '10..another liver met. Cisplatin and gemzar no luck, keep on with herceptin, try tykerb and xeloda..Things go up and down for a while...Liver function starts going wacky..tumor is sitting on or around bile duct, stint gets put in, but the pain and jaundice don't get better...enzymes through the roof, need blood for the first time ever things just get worse...bili is sky high and ammonia sets in, they try to see if anymore stints could help but apparently liver is squeezed shut...lactralous given to reduce ammonia.. bili is coming down and finally got first round of tdm...still sick during this time last week spent in hospital keeping close eye on levels etc...I was told not much more to be done...ok, however I've only had one tdm and I'm not ready!!! I hope this stuff is making sense to you guys..I'm using this crazy laptop that's cursor keeps jumping..Anyway gastro dr is giving steroids to see what is inflammation in the liver and what is actually tumor...I guess I just need to hear your thoughts..I've mentioned trying any type of gamma or rads to reduce burden but not getting too clear an answer...I would just love to glean from you lwisdom on how to get liver any healthier just to stay in this race..Can you at all help? I will try to get my profile set up a bit to make me more user friendly..thanks..Tammy

[michka]

Hi Tammy. Stay strong. I just want to share what I lived. Before starting TDM1 I also had to have a stent put in urgently. My liver enzymes were limit for the trial. I was feeling really bad. I had tumors in my lungs, abdomen and thorax. I also had steroids for my first round of TDM1. During the first 3 rounds of TDM1 I felt a lot of pain in my abdomen and near the liver. (in the thorax also but that is another problem with TDM1). The first scan after 6 weeks showed big improvements. So my message is that even if you feel strange things in your body, keep faith.
I had a liver resection a year before and had investigated at the time a Cyberknife option. It is a possibility if the tumor is not too big. In my case a Cyberknife center in France was ready to operate on 3 x 1cm tumors. I opted for resection. During the resection they also used RFA on 2 other small tumors they discovered. How many tumors do you have in the liver and what size?
The first thing I hope though, is that TDM1 will work for you too Tammy.
Michka

[tricia keegan]

Hi Tammy and so sorry I have no advice but wanted to send you good wishes! xx

[BonnieR]

Just to add my support. You are a strong woman. Keep the faith

[sarah]

Also sending support. new news is staying on anti-hormonals longer. (recent New York Times article) Tamoxifen for 10 years not 5. maybe ask about that.
hugs and love
sarah

[Laurel]

Investigate Milk Thistle to support your liver. Some gals on this site swear by it.

[Rolepaul]

I am going for the cyberknife route if they cannot (or will not) do arthroscopic surgery. They can do a prelim of the cells while they are doing the surgery and make a call. Your doctor is someone not certain of a path forward and looking for more information. They need to call MD Anderson, UCLA, Mayo, Dana Farber, Johns Hopkins, etc. immediately, but you need to push them to do so. We can speculate from this forum, but they need to know to move on this now.

[jml]

Hi~
I'm so sorry you're wrestling with this!
It looks like we've had similar disease patterns and treatment paths.
I've had a bumpy 10.5yr journey with this disease and multiple battles with liver issues - treatment history including RFA, liver resection and chemoembolization, followed by 6mos of TDM1(EAP).
Currently my liver is NED and has remained so since the chemoembo in June 2010, Thank God.
Have any of your docs presented chemoembolization as an option? It's done by an Interventional Radiologist, an out patient procedure, and as I recall, pretty easily tolerated. I wish I could recall the details of my disease state at the time, but I wasn't feeling well and don't remember. I do recall that I could palpate the rigidity of the tumor bulk, but my liver function/enzymes were still normal.
I hope this is a viable option for you to explore.
Wishing you the best~

Keep the Faith-

Jessica
Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart.
11/1 - Echo looks okay, but fearing I'm exhibiting symptoms of Superior Vena Cava Obstruction Syndrome.
Moved up PET scan to explore this...nervous.

[conomyself]

Tammie, I know you can get through this! You're going to do great!!

I agree about milk thistle. And I agree about getting your doctor to consult with a major cancer center...

Keep us posted

[chrisy]

Hi Tammi,
I haven't had any of the localized therapies, but we are having an interventional radiologist evaluate my last scan to see if I would be a candidate for chemoembolization.

My liver functions shot up while on TDM1, and I came up with some overall liver health strategies that even my nurse sort of believed helped. Also, not unimportant to note, the TDM1 blasted the liver mets completely into remission and worked for a little over 3 years. It did take a little bit of time, so keep the faith.

I'm copying my liver cleansing regimen below.

7 day Liver cleansing juice fast

Main factors, must take daily: when I am absolutely religious on the beet juice and carrot salad, I do well. For me, these 2 are the most important.

Beet juice (you have to juice it yourself) 3 oz/day, you can gradually increase this but I pretty much stay with the 3 oz.

Carrot salad Grind up carrots to a PULP. For each cup, add a dressing of 1T each lemon juice and good olive oil. You can use more, but not less. You can also add raisins, pineapple, or whatever to make it more interesting. I eat this with slivered almonds and it is really really good. You have to eat 1 cup daily. I have sometimes just thrown this into the vitamix and consume it as a smoothie. It’s yummy

Green juice Again, this is from a juicing book and frankly who has that kind of time! You’re supposed to have 1 cup daily, made from celery, greens, cucumber, whatever. You can also get green powder and make green juice from that.

Green broth 1-2 C/day This is also pretty tasty! Made from 1-2 cups each celery, zucchini, and green beans cook these until just barely softened in just enough water to cover. Then puree in a blender – it should be fairly thick. Add 1-2T fresh parsley and 1T butter and season to taste – with whatever you want! I sometimes toss a garlic clove in when cooking the veggies, and sometimes a bunch of artichokes which are also healthy for the liver.

Drink at least 8 glasses of water of course…

Supplement with some milk thistle I have also supplemented with B6 and N-acetyl cysteine, but check with your doctor on these.

All of this is in addition to your NORMAL diet of varied juices ha ha – remember this is from a juicing book.

This is a 7 day fast but I am on it pretty much perpetually (at least the beet juice/carrot salad part) with no ill effects. My LFT’s rat me out when I don’t do it. One word of warning, after a day or so your digestive tract might start producing…evidence…that you are eating a lot of bright red and orange things. So don’t freak out!

[Emy]

Eat asparagus twice a day.....supposed to be excellent for liver mets....and seaweed also....trying to convince my oncologist to do RCA but she disagrees....says patients that pushed her to agree to it, it didn't work....I have appt to see a liver dr in jan

[tammymarie1971]

I keep losing posts so this will be short and sweet, thank you all for your responses and reaching out to help someone else...I love that about you all! I am grateful... I also know that while I will do what I can ..I don't know the future...But what freedom there is in knowing who does hold my future!!! As I know many of you also believe..I am grateful you have been put in my path! I will be taking a good look at the diet suggestions...this liver of mine will be loving Beat into submission or remission if I have anything to say about it!!
Thanks again....I will also get some better answers from my onc about exactly where this /these tumor(s) are and what size..
\thanks again, will stay in touch..
Tammy