Liver Mets - MD Anderson/Advice/Support

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lbmotley
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Liver Mets - MD Anderson/Advice/Support

Postby lbmotley » Thu Mar 13, 2014 9:11 am

I write in hopes of some guidance from your experiences. My CT scan yesterday confirmed that there are 4 mets in my liver, so I am now Stage IV. Luckily, they are all in my right lobe, so things look to be favorable in the sense of surgery. We are making a plan for chemo/surgery and what that timeline will look like. I plan to go for a second opinion at MD Anderson. Do any of you have experience there? Also, have any of you had liver surgery? As you can imagine, I am scrambling for peace and comfort, on top of information and guidance.
Dx 4/13 Stage III @ 26 + 17 wks Pregnant
Resect + Temp Colostomy + Folfox
8/13 Baby Born
2014 - Ostomy Rev, Stage IV to Liver, FOLFIRI/Avastin
6/14 Hepatectomy/FOLFIRI
Liver Ablation
FOLFIRI/Avastin - mets to lungs, liver, pelvis
2015 Colondar 2.0 Model

ColOrPan
Posts: 378
Joined: Thu Aug 22, 2013 2:15 pm

Re: Liver Mets - MD Anderson/Advice/Support

Postby ColOrPan » Thu Mar 13, 2014 9:35 am

Hello Ibmotley,
a lot of people have plenty of experience with liver mets, several will be replying to you shortly, I am sure, so hang in there. Man, I can't imagine how tough it must be to have chemo while pregnant. You surely are a trooper. Hope your little girl is doing ok.
06/2012 DH rare intestinal type Ampullary/duodenal cancer. They extrapolate from colon cancer. FOLFOX 6 been working since Aug 2013. Feb 2014 once a month folfox as maintenance.
May 2014 Folfiri - fail
Starting off-label JAKAFI 08/25/14

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Liver Mets - MD Anderson/Advice/Support

Postby Deb m » Thu Mar 13, 2014 10:05 am

Hello,

My husband and I travel to MDA every 3-6months for his follow-ups. We see a doctor Shureiqi who specializes in colon cancers at all stages. We can't say enought about him and the whole hospital. You get expert, excellent care their. Whoever you see you will be in excellent hands. It is very easy to see why they are rated number 1 in cancer research and treatment! My husband did not have liver mets, so I can't speak on that, but I know you will be in the best of hands. The hotels are all very accomidating to MDA patients. They give you special rates on your room and provide free shuttle service to and from the hospital all day long. You really don't need a car. I'm sorry I can't give you information on liver mets ect. but I hope this gives you confidence that in my opinion you could't of chosen a better place for a second opinion and possible treatment. I hope all goes well for you.

deb m

stevieb
Posts: 407
Joined: Sat Feb 09, 2013 12:26 am

Re: Liver Mets - MD Anderson/Advice/Support

Postby stevieb » Thu Mar 13, 2014 10:19 am

I've had liver, lung, and rectal surgery there and still go every 3 months for CT and bloodwork followup. Please see my signature. I responded to your email also. Please email or call if you need ANYTHING, I am more than happy to tell you all that I can or try and answer your questions. FYI: I had three different surgeons do surgery on me, one for liver, one for lung, and one for rectum along with an oncologist. They are very specialized and you are well taken care of. Prayers your way!

Stephen
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

mom_2_3
Posts: 361
Joined: Sat Nov 29, 2008 8:09 pm

Re: Liver Mets - MD Anderson/Advice/Support

Postby mom_2_3 » Thu Mar 13, 2014 11:36 am

lbmotley,

I am not treated at MDA, but rather Memorial Sloan Kettering. I was diagnosed with 5 liver mets during my c-section for our third child. After 4 months of chemo (Nov 24, 2008 -Feb 9, 2009) I was scheduled for a liver resection, colon resection, gall bladder removal and HAI implantation. That surgery was 2/20/09. Since that day I have been NED. So I have made it to my 5-year remission mark and my CEA continues to be consistent so I am hopeful I will be clear again at my next scan in July.

No doubt you are scared and if you were like me you looked for stories of other people that had survived long-term after a liver resection. Prior to my surgery and immediately after I kept a journal logging every single name and story I could of those who had survived long-term. I read those names nightly and they helped to calm the fear in my heart. Now that I am 5 years out the fear doesn't stop my in my tracks like it did then.

Some thoughts I had concerning your treatment going forward is that you consider an HAI pump to be implanted during your liver resection. The HAI can decrease the odds of recurrence. I was told (at my surgical consult) that the chances of recurrence in my liver were 70%. With the pump the chances would drop to 50% that I would have a recurrence. Given the relatively easy nature of HAI pump chemotherapy it was a no-brainer and I am so glad that I went that route. Many of the names in my book had had the HAI pump so I felt that my odds for long-term survival were increased from that particular treatment.

Another thought is that recovery from my liver resection (my surgery was about 9 hours long) was relatively "easy" in that I had no complications and my pain levels were well-managed. Once I left the hospital I rarely used the Percoset I had been prescribed. When I discarded those pills a few years later the bottle was still almost full. But, for the 6 weeks after my surgery I was instructed to not lift anything greater than 10 lbs. I am not sure if that was specific to the HAI or to the surgery itself but I did need to plan for help as I could not lift our baby girl. My mother-in-law and sister stayed with us 24/7 for 6 weeks in order to help out with the children and grocery shopping. Ask your surgeon at the consult about this.

After my resection I was very very tired. The doctor said that my liver re-generating was much like being pregnant. My body was sending all its resources to the growing liver and not as much to the rest of my body. So I slept a lot. Again, with assistance from family it wasn't so bad but I don't know what I would have done without their assistance. Once I hit the 4-5 week mark I was feeling fantastic.

Since my surgery I have not stopped exercising. I do cardio workout every day and of 365 days in a year will take off maybe 20-30 days. Thanksgiving night I was on the treadmill. When I asked my doctor post-surgery what I could do to avoid recurrence she said "Exercise." So, I do.

Best wishes for your consults and surgery.
Amy
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
10 years NED.

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juliej
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Joined: Thu Aug 05, 2010 12:59 pm

Re: Liver Mets - MD Anderson/Advice/Support

Postby juliej » Thu Mar 13, 2014 1:44 pm

I agree with Amy about the HAI pump. I also had mine implanted at Memorial Sloan Kettering during my liver resection to prevent recurrence. The surgery was on November 4, 2011 and my liver has been completely clear since then. The surgery was from 8:30 a.m. to 3:45 p.m. and involved three procedures: LAR, liver resection, and HAI pump. I was in the hospital for 7 days. When I left, they gave me oxycodone for the pain, but I only needed it for a few weeks. I was really tired for about a month (but not too tired to go to the Macy's Thanksgiving Day Parade 2 weeks after I was released! :D ). The hard part for me was gaining back the weight I lost from the surgery. I was already lean before surgery and when they weighed me afterwards, I'd lost 15 pounds. It seemed like every calorie I ate was going directly to growing a new liver! It took about 3 months to gain back 10 of the pounds.

Tips: Get in as good as shape as you can before surgery. That way your body will be in good condition to handle everything. Ask for an epidural - they work really well for pain control for this kind of surgery. While you're still in the hospital, walk as much as you can, even if you walk slowly and have to rest a lot. Walking will help your body heal faster and the sooner you start healing, the sooner they release you. Before they take you into surgery, take a deep breath and realize that when you wake up, the tumors will be gone and you will be cancer-free! You can do this! :D

PM me if you have any questions. And best of luck to you with everything!
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Hall0731
Posts: 295
Joined: Sat Sep 08, 2012 1:55 pm
Facebook Username: Teresa Hall
Location: Spring, Tx ( right outside Houston)

Re: Liver Mets - MD Anderson/Advice/Support

Postby Hall0731 » Thu Mar 13, 2014 1:59 pm

I have experience with MDA.I had 5 liver mets ( 3 on left lobe and 2 on right lobe) and a harmatoma on the backside of my liver removed in Janurary by Dr. Claudius Conrad, who I would recommend as a liver surgeon to anyone. I love him.. Great surgeon. I recovered and was back to work fulltime in 3 weeks. I have the midline incision down the middle of my chest and stomach. couldn't do it laprascopically because he wanted to view all of my liver, before he finished. it was about a 4 to 5 hour surgery. I just had my ct's of my chest/adb/pelvis and everything is clear except the one lung nodule that I knew about, and that is going to be cut out March 25th at MDA. My cea went from 1.8 down to 0.4 after surgery. I can live with that. If you have more specific questions please feel free to pm me. I am local, so never had the need to have a hotel room, but I know MDA is great at arranging or helping those that need to travel. They are very accomdating on appts lined up to make this easier too. Have you talked to anyone about sending your scans. I would highly suggest Dr. Claudius Conrad. He likes the challenging cases, and really fights for you as a patient.

Teresa
Dx 7/12 stage 3
8/13 1 lung met & 5 liver mets
1/14 2 sided liver wedge resection
3/14 lung wedge resection
10/14 It's back. 1 liver lesion
2nd liver resect. 1/5/15 Clean
5/22/15 back again 5-10 lung mets

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Rob in PA
Posts: 2004
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Liver Mets - MD Anderson/Advice/Support

Postby Rob in PA » Thu Mar 13, 2014 4:19 pm

I had multiple liver mets and about 70% of the liver resected along with an iliostomy reversal. Honestly, I've had plenty of surgeries and did not think the liver surgery recovery was all that bad. I was fatigued for about 2 or 3 weeks but after one month I was moving around pretty good. My liver was fully regrown after four weeks. No experience with MD Anderson, but I know they are one of the top in liver surgery.

Felt kind of weird in there even after i was fully recovered. Kind of like a bowl of semi hard gelatin moving around the bottom of my ribcage. Sometimes i literally pushed on my side to "Tuck" the liver back under the ribcage. :shock: Doc said that was normal, and i've heard others on here say the same thing too.

Best to you.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

Staci's team
Posts: 386
Joined: Fri Sep 25, 2009 9:43 am
Location: Canfield, Ohio
Contact:

Re: Liver Mets - MD Anderson/Advice/Support

Postby Staci's team » Thu Mar 13, 2014 9:11 pm

Hey lady....as I said in my email to you, you'll have this whole crew here swinging chickens for you and saying lots of prayers. Just wanted to pop in to say how glad I am that you're getting some really good responses here. Know that Staci and I are both praying for you and your whole family as well.


Chris
Husband to Staci, diagnosed at age 32
Clinical dx Stage II/III rectal cancer, 7/2009
APR surgery 11/09 leading to...
Pathological dx Stage IIIB, ypT3N1M0, 11/2009
http://www.caringbridge.org/visit/staciwills
Member of The Colon Club's Board of Directors

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: Liver Mets - MD Anderson/Advice/Support

Postby dianne052506 » Thu Mar 13, 2014 10:14 pm

lbmotley,
Is your current doc referring you, or are you doing the on-line patient self-referral? I started with the on-line, but got my doc involved when I panicked and thought their 7-10 business days was too long for me to wait for an answer. However, both methods work very efficiently.
My liver surgeon at MDA was Dr. Eddie Abdalla. Loved him. He removed almost 80% of my liver (3 tumors) as if it were a piece of cake. That was in October 2006. I've had lots of other problems since then, but none, thankfully, related to the liver. Recovery was uneventful except for back spasms I had afterwards that didn't appear to be related to anything, even the epidural.
I recommend you start now looking at the patient self-referral and see what records that want you to gather and send. When they have everything, the records are reviewed by the tumor board and you are contacted regarding an appt. Unfortunately, no matter how recent your last CT, if they are considering surgery for you, they will want their own CT done. For the liver, they very carefully calculate total volume against the volume of tissue that must be removed.
If I can answer anything specific, please let me know.
I wish you the best,
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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dianetavegia
Posts: 2722
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Liver Mets - MD Anderson/Advice/Support

Postby dianetavegia » Sat Mar 15, 2014 8:50 am

I had one liver met 3 years out and it was less than 1.5 cm with only the center lighting up on the PET scan. Because it was in the middle of the right lobe, and on the back, my liver surgeon took 80% of my liver. It grows back within about 6 weeks. I had no follow up chemo.

It's a hard surgery and hard recovery but I'm 63 and my surgery was 2 years ago. I have my 6 month PET scan (allergic to CT dye) in 3 weeks.

Re what Rob said..... my new gastro mentioned the liver poking out from behind the rib cage in many people and also the amount of adhesions/ scar tissue and how a deep breath can feel 'odd' because of the scar tissue attaching liver to lung, etc. 93% of all people begin to grow scar tissue within 5 minutes of being sewn up after surgery!
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2


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