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Metastasis to liver - treatment options

Bellen
Posts: 281
Joined: Aug 2016

Hello - I am an 11 yr survivor of AC and was recently diagnosed with liver Mets through a biopsy - CT scan said several lesions in right lobe.  Wondering if there are others who have been diagnosed with liver mets and what your treatment options were, or what treatment you had.   Have posted on the AC and Liver sites as well.  Would very much appreciate any input - thank you.  Best wishes to all.  

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Trubrit
Posts: 4781
Joined: Jan 2013

Hello Bellen. 

I had an Thermal Microwave Ablation on my 2.2 cm liver met back in April 2014.  I have been NED since, and hope to continue that way. 

I guess not everybody is a candidate for an Ablation, but it is definitely something to look into. It was 100% less invasive than a resection. The recovery time was next to nothing, and the side effects are minimal twinges where the scar tissue is. 

Good luck in whatever avenue you have to persue. 

SUE

Bellen
Posts: 281
Joined: Aug 2016

Hi Sue - Did you have other lesions in your liver as well?  Would you know whether that procedure is appropriate for several mets or when only one is present. CT report says largest is 2.8 cm, but there are others In right lobe. Thank you for response. Best wishes. Will ask about this.

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Trubrit
Posts: 4781
Joined: Jan 2013

I don't think I will be much help, but others will come along soon and share their wealth of knowledge. 

I had just one Liver met. At 2.2 cm, it was actually a little bigger than they like to ablate. I think the cut off is 2 cm. On the CT scan, it measured as 1.5 cm, but when they got in there; they found it was bigger. Also, the position of the mets makes a difference wether it can be ablated or not. 

I think they can ablate more than one at a time, but don't quote me on that. I think someone here had two done. 

Cyber Knife. Not sure if anyone on here has had it.

Y90 - placement of radioactive beads on the tumour itself. 

Resection - The big surgery, and what most seem to have, with great success. 

SUE

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beaumontdave
Posts: 977
Joined: Aug 2013

Hi and Welcome, if all the mets are in the right lobe, resection would be the first choice, I imagine. They can take a whole lobe if they need to. It's usually the first, best choice for treatment unless other factors are involved. In 2011 I had three mets in the liver removed by "scoops" the surgeon called them. Two years plus later, they had to dig out another 3cm met that was in the margin area of a previous lesion, and I'm coming up on 2 years NED since. The doc originally asked me if I wanted ablation, radiosurgery, or resection, and I said I wanted the stuff out. Some like Sue have done very well with other treatments, but my feeling is, if you can get them resected, do it, because it has the best chance of staying gone and maybe taking out whatever tiny "seeds may be near the mets. Anyway, that's my take, best of luck to you..............................Dave

Bellen
Posts: 281
Joined: Aug 2016

Thank you Dave for responding. That sounds encouraging if it is possible - the CT scan says "several" lesions and in the right lobe, so I'm hoping I have some options - won't know until see Cancer Clinic. In Canada, we play a waiting game for all of our biopsies and Cancer Appts unfortunately.  Very nerve wracking. Best to you.

gfpiv
Posts: 60
Joined: Apr 2010

To me, the HAI pump (preferably at Memorial Sloan Kettering in NYC, or some other expert hospital) would be a good thing to look into for mets limited to the liver.  Frankly, it saved my life, after I was given no hope by multiple other oncologists.  Unfortunately, I expect MSK is not an option for you in Canada - I'm sure they wouldn't pay for it, and I don't know which, if any, hospitals up there actually do HAI.  I can't even begin to imagine how I would be able to self-pay for all the HAI-related treatments I've had; the initial HAI implant and colon resection alone was close to $80k USD I believe.  Seems like your options may be to hope for a surgeon that will resect (I suspect you may not be a candidate for ablating them all right now), or else do some chemo first to shrink them down (likely systemic; perhaps chemoembolization of the liver also?).  In some cases I believe that if your lesions are all on one lobe, they can even cut off blood supply to half your liver, have the good half regenerate to roughtly full size and get rid of the "bad" lobe.  Y90/Sir Spheres is also an option I'd look into in extremis, though not sure if that's a possibility for you.  Good luck!

-Chip

smb245
Posts: 2
Joined: Aug 2016

Hi Chip - I am looking at HAI at Sloan Kettering.  Can you share a little bit more about your experience with it?  I am still Chemo Niave as I was just diagnosed within the last week. I have been told by one surgeon that my liver is currently unresctable, however, if we can get my tumors to shrink I could become a candidate for surgery.  My surgeon thinks HAI would be my best option.  Concernerd because I live in Arizona and wondering about possible side affects while I was home and away from cancer hospital. 

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Trubrit
Posts: 4781
Joined: Jan 2013

I'm sorry you have had to find yourself here. Not the club where people rush to join. 

Edited out. 

SUE

mom_2_3
Posts: 964
Joined: Nov 2008

Sue, 

Are you sure your comment hearing HAI can be brutal is correct?  You mentioned it on another thread as well but corrected the title to refer to HIPEC (which I have heard can be tough).  I don't think I have ever spoken to anyone with an HAI that says it was brutal.  I wouldn't want to scare any individuals off from this therapy as it can be quite effective.

 

Thank you!

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Trubrit
Posts: 4781
Joined: Jan 2013

My most sincere apologies!  I also did this in another post, which I edited. I had forgotten that I had also replied to this post. 

I don't know where my head was, but it was definitely HIPEC that I was thinking about and not HAI. 

Thank you so much for pointing this out, I really do appreciate it. 

And smb245, I am sorry that I let this slip by.  I hope my post did not cause you too much concern and worry; I would hate to have added to the already heavy burden load you are carrying at this time. 

SUE

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PhillieG
Posts: 4885
Joined: May 2005

On Sept 20, it will be 12 years since I had my HAI pump installed at MSKCC. Best thing I did from a medical standpoint. It hasn't been in use since mid 2005 but I still have it in there and get it primed every 2 months or so in the event that I need it. Once it's take out, there's no reinstalling it. I'll get my deposit back when I "check out" for good.
My Onc, Dr. Kemeny, has a 60% 10 year survival rate using the pump. Why it's not used more is a mystery to her and to me as well. As she put it, "it's not rocket science"...

Good luck with everything.
BTW: I have met many people who fly in for all over to have consultations with her.

http://imgur.com/a/rv66d  (that's dot g i f )

PS: Why can't I add images anymore???

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Trubrit
Posts: 4781
Joined: Jan 2013

The images feature - including smilies - hasn't worked since the last 'upgrade'.  

AS someone who REALLY likes to add smilies and emoticons to messages, plus pictures, I find it very frustrating. I have emailed them several times concerning this, but have had no real reason given me for the change. 

Good to see you, as always, Phil.

SUE

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PhillieG
Posts: 4885
Joined: May 2005

It won't allow that type of file it seems.
It's worse than I thought! I can't believe that it modifies a screenshot!!! It's a conspiracy I say!!! :-)

Bellen
Posts: 281
Joined: Aug 2016

Hello Chip and others - thank you for your response. I will let the group know after my Clinic appt - still have not met with anyone and really stuck on my own right now.....wondering what the prognosis is.  

dancer2
Posts: 49
Joined: Jul 2016

i started a session but only two responded. I was diagnosed in oct of 15 with a colon tumor (cancer) and one lesion in liver and two tiny spots one in each lobe...liver spot was ablated out the following april and was told by the radiologist it was successful and no new spots anywhere and that was just at the end of may of 2016. a month later had to have pt/ct scan for my oncologist and he just told me my liver glowed and i now have six new tiny spots in the lungs and four in the liver and said come back in 3 months. i, of course, want them out and since the oncologist said nothing about seeing anyone else i went back to the radiologist who explained matters to me and his suggestion was the thereasphere procedure which you can look up. however, he did not say he talked with my oncologist or not so i went back to my colon surgeon and she basically told me that metastisized cancer is in the blood and one needs chemo and gave me a card for another doctor ( and she recommends no one) and i see that doc tomorrow. at this point in my journey i have come to realize we are all basically alone, so be on top of it. I have had two doctors tell me they are baffeled why my onc said what he did. one told me to go see a certain doc at the mayo in minnesota if i wanted to hear from the best. my original doc at least told me to go see what this local doc has to say...don't ask about prognosis, it will play with  your mind. as you can tell from this site, many live with it and deal with it as it comes.........it's getting a good doctor imho. this is a great site and full of good, helpful information.

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ReginaS71
Posts: 7
Joined: Sep 2016

I am so sorry you are facing this giant! I pray that you will find the doctor that has the most wisdom and will receive the answers and help you need.  The Lord bless you and keep you and make his face shine upon you!

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djduros1
Posts: 1
Joined: Oct 2016

I, too, have been going thru this since 2013.  Today went for 2nd opinion at cancer treatment centers in Chicago and after petscan and MRI found its in liver and lungs and in bloodstream as my bones are affected too.  Going on new chemo drug lonsurf in hopes the tumors will stop growing.  They also have holistic meds im taking to keep immune up.  I have to live a long life and this better work.

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Trubrit
Posts: 4781
Joined: Jan 2013

Sorry to hear of your struggles and spread of Cancer cells. 

I wish too, for you to live that long life. 

SUE

dancer2
Posts: 49
Joined: Jul 2016

I saw a new oncolgist/hematologist/internist today who went over all reports and looked at several scans. Was told that basically i was left without any treatment for six months and told me there are many chemo drugs  they can use and each of us will respond differently. She also mentioned that most of them will 'just melt the mets away'. Suggested the implanted port with a pack you wear home for three days, then have two weeks off. She was very good at assessing my situation and got right on with writing the referrals so she can get it in quickly. So glad I read this page. Wonderful forum! God Bless us all!

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beaumontdave
Posts: 977
Joined: Aug 2013

I did the port and pack, as did many here, and it's a reasonably easy way to go, just don't screw up the line, like I did twice, or it's off to the ER with you for a fix.............................Dave

dancer2
Posts: 49
Joined: Jul 2016

hi, dancer2 here....this new oncologist i just saw also wants another biopsy on liver lesion and have it checked for EGFR and KRAS mutant...anyone know about those?

Bellen
Posts: 281
Joined: Aug 2016

Hello dancer2 - Please let us know what treatment is eventually planned for you.  Wishing you well.  I had a CT scan July 4, which indicated concern for mets, and told by cancer clinic to have liver biopsy. It is now Aug 21 and I do not have an Oncologist booked yet.  Very upsetting.  The biopsy report has not been explained by an Oncologist yet - but does say it is consistent with adenocarcinoma of colorectal origin, so I'm in the dark right now about a lot of stuff.  My biopsy said tumour cells are positive for cytokeratin 20, CDX2 and villin.  I would be very appreciative of anyone and all who post re: treatment options.  Best to all.

dancer2
Posts: 49
Joined: Jul 2016

hi bellen....am having a port in this week, plus the usual tests, then if i have read the referral right another biopsy and it seems like the new oncologist wants to ablate the largest lesion. then i will start with three days of continuos chemo and off two weeks and only she knows how long but i remember six or 12 treatments. since she works out of a hospital near me i wanted to know why a port...she told me basically it's a vein issue since she wants to have a continuos flow going in and imho it is because of the near six months of nothing but that is not verbatim, just how i rememberd what all she said.....plus with a port, they can give the chemo, take blood, and when u need a scan i understand they can put the agent through the port for that also....guess i will find out if i am one who will or not like the port simply because i am very active and use my upper body a lot.......get copies of all your path reports and scan cd's and go see an oncologist..........i had to go back to my original radiologist to have him explain the last scan where four new lesions popped up in one month.....but at least i feel like something is going to be done now and none of us know how it will all turn out. But it can work out for the best. i am not sure if this site allows links to articles about this otherwise i would send a link from a paper by a doctor out of mayo in rochester. a very good presentation on how he treats colon/rectal cancer with metatastic liver lesion/s. and one that is easy to read.....take care of yourself

dancer2
Posts: 49
Joined: Jul 2016

dave, how did you screw up the line on the port if you don't mind me asking? Because i am an active person  and do not want to give up my dance, and it's at pro level so it can get quite strenuous

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beaumontdave
Posts: 977
Joined: Aug 2013

The line went from the pack/bulb with the chemo, which was on my waist, up under my shirt to the needle in the port, just below my collar bone. I'm a contractor and I did lots of physical stuff without issue. Twice though, whatever I did untwisted the couplers, and I wouldn't notice the unhooked line immediately, so by the time I did, the line was clogged. After the second time, I learned to wrap some tape around the line connectors to stop screwing up the line...........................Dave

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beaumontdave
Posts: 977
Joined: Aug 2013

I also learned to wear an undershirt, even in the heat, because a tucked in shirt under another shirt protected the line better.......................Dave

BillO60
Posts: 72
Joined: Mar 2015

My new oncologist sent me a recent article from Wolters Kluwer regarding colorectal cancer and specifically metastatic colorectal cancer.

Because there are 11 pages of material I'm only going to highlight some of the information that seems relevant to this discussion.

The article states "Cure is not possible for most patients with metastatic colorectal cancer, although some patients who have limited involvement of distant organs (particularly restricted to the liver and/or lung can be cured with surgery. Chemotherapy does not cure metastatic colorectal cancer, but it can improve symptoms and prolong life. Sometimes both chemotherapy and surgery are recommended."

Related to the liver "Up to xx% of people may be cured if metastasis in the liver can be completely removed (the medical term for this is "resected"). In order for surgery to be considered, there must be no evidence of cancer outside of the liver, and there must be an adequate amount of normal liver left behind after the resection to sustain life."  (note, I blanked out the percentage of people that may be cured. I don't want to know the odds unless someone can tell me, absolutely, which group I fall under. )

The size and location of the tumors are also considered. Chemotherapy might be recommended to try to shrink the tumors before surgery.

They recommend patients request a consultation with an experienced liver surgeon or surgical oncologist.

I haven't discussed surgery with my oncologist but have raised the question about ablation which I would prefer. I currently have 3 tumors in my liver, the largest being about 2.5 inches. I have one affected lymph node in my lung that for the time being is assumed to be metastasis. It's shown up brightly in 2 separate PET scans.

According to the radiology oncologist the size of the liver tumor makes it too large for ablation and with metastasis in both the liver and the lung, surgery does not seem to be an option.

Everyone is gung-ho on chemo at this point even though they all acknowledge it's not a cure. What the oncologist wants to see happen (optimistically) is that this chemo cocktail will shrink the liver tumor and make the lung spot disappear. At that point I can push for alternatives to remove the tumors.

There are a lot of sites that give a fairly decent summary of the various treatments for metatstasis to the Liver. I have no attachment to the following hospital, I just happened to run across the site during a search and liked the summary.

www.froedtert.com/colorectal-cancer/metastic-disease/liver-metastasis.  On the same page there is a link to another page covering Lung Metastasis.

The chemo cocktail I'm currently on is
- Irinotecan
- Leucovorin
- Panitumumab
- Fluorouracil (5-FU)

Plan was to get it every 2 weeks for 10 cycles.

I've had 2 doses and they had to put #3  on hold because the Irinotecan caused some of my liver enzymes to go out of whack.  So, went for blood work and a PET scan today to make sure it was only liver damage (I joke, sorta) and not the cancer stealing more of my livers real estate.

Enzymes are back to normal or near-normal, levels. Having an extra week to recover, sleeping about twice what I normally do, and eating about 8 cups of homemade vegetable soup everyday and drinking  a gallon of water, watered down fruit juice, and watered down gatorade, probably didn't hurt.

There hasn't been a formal report from nuclear medicine yet on the PET scan but the oncologist reviewed the scan and believes that the cocktail has reduced (not sure how much) the size of the turmors, including the lung node.

That's an improvement over 8 cycles of Folfox that didn't appear to do anything other than to get me out of the apartment so I could socialize with the nurses and for the mets to my liver and lung to grow.

I'll be restarting chemo tomorrow with a reduction in the dose of Irinotecan.

Don't know if anything in all this will help but hope something in here will tell you something you didn't already know or haven't already found.

Best Wishes,
Bill

Bellen
Posts: 281
Joined: Aug 2016

Hi Bill and all - I finally got cancellation appt at a newly referred clinic, as I had been waiting so long. Long drive, but took it.  Had not had CT shared before and he said that there are several tumours in both lobes - I thought just right lobe.  My diagnosis is adenocarcinoma of colorectal origin with mets to liver - not sure yet where it originated, as I had squamous cell anal cancer with some lymph nodes.  Having MRI of liver and CT chest soon, and having port put in -'have choice between port or picc line, but figure port is less inconvenience.  Plan right now is folfax (oxaliplatin cocktail) or folfiri (irinotecan cocktail) + bevacizumab added to both I believe.  He still has to meet with dr team to go over my reports, as they had squeezed me in, and he was given my case when I arrived.  But just wanted to tell group that I finally got an appt, and things are in the works.  Any suggestions on treatment or Port or Picc line?  Appreciate any info you can give me.  Also, how did you feel after having chemo?  Any sickness, mouth sores?  Did you lose your hair with your treatment?  Best to all. And Bill good luck with your treatment.

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Trubrit
Posts: 4781
Joined: Jan 2013

I know it seems silly to get happy about chemo, but it means the ball is rolling and you are doing something to tame the beast. 

I've never had a Picc line, but I can tell you the port is a wonderful thing. Truly a great blessing, in my opinion. I don't know if I fancy anything stuck in my arm. The chest was a very convienient place and I had no problems with mine. 

As for side effects. They can vary in number and severity. You won't know how its going to affect you until you go through it. I had a whole list (which I have posted before) of side effects, including hair loss (all over) and mouth sores. Nose bleeds, heartburn, metal mouth, vision problems and of course neuropathy, to name just a few of the worse. I never got sick. YAY!

Good luck as you move forward into treatment. And keepp visiting us, we will help you through. 

SUE

 

Bellen
Posts: 281
Joined: Aug 2016

Sue - Do you remember what chemo you had that may have caused the hair loss?  Onco is saying won't cause hair loss with the chemo he mentioned, although last cancer chemo said hair loss was rare and I lost my hair quickly. Have been looking at wigs.  Also had terrible, terrible mouth sores - I wonder if it helps to take swishing mouthwash or other? all along the way - before they start even. Worried about that, as I can't afford a lot of weight loss.  Will get port, as you say better. Will be travelling 2 hrs each way, so hope that I feel okay to travel after the chemo - every 2 wks and then CT scan around month 2 or 3.  He is still meeting with a team, so not sure if plan will change at all.  He sure encourages, telling me to keep my life the same as much as possible, exercise, etc.  Really liked him.  Thank you Sue and the whole group for your support.

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Trubrit
Posts: 4781
Joined: Jan 2013

I also travelled many miles to my treatments and follow-ups. 2 1/2 hours each way. It made for a long day, but thankfully, I had no problems on the journey home. The steroid part of the infusion takes care of that. 

I was on FOLFOX and 5FU when my hair started falling out. I think the radiation put paid to the rest. I never went bald, like breast Cancer patients do, but I looked like Gollum. I mean, no joke, I looked like Gollum. My boys, at home at the time, did not want me to shave my head; but when I moved to the big city for radiation/chemo, I shaved it, and was very, very glad I did.   I didn't bother with wigs or hats, because I hate anything on my head. I looked great! I rocked the shaved head Cool.

As for the mouth sores; I swished in a mixture of salt, baking soda and warm water. It really worked. I would advice doing it every day, regardless of wether you have active mouth sores of not. 

You will do well. Just go with the flow. It won't be fun, but you'll be alive, and 'Stayin' Alive', and thats what counts. 

SUE

Bellen
Posts: 281
Joined: Aug 2016

hi Sue - How many treatments of the folfax did you have?  I know a part of it is 5Fu, so I am getting prepared for hair loss or bad thinning as you say.  Did you say you had a port, as I have a choice,  but I said port - last time picc line, but I think that would be worse this time - ie showering, flushing out, etc.  thanks so much again.  May have more questions, if you don't mind.

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Trubrit
Posts: 4781
Joined: Jan 2013

and one day, it will be you answering the questions. 

So yes, I did have a port, and loved it. 

I had nine treatment's of FOLFOX followed up each time with 48 hours of 5FU.  Then I had six weeks of Radiation and 5FU. I didn't like the idea of being hooked up 24/7 to the pump, but it wasn't bad at all. 

 I bet it was the 5FU that caused my hair loss. 

SUE

BillO60
Posts: 72
Joined: Mar 2015

Bellen,

I went through 8 cycles of the FolFox (without 5FU).  From what I've read in the literature that's the first line.  One main difference between the Folfox and the Folfiri (at least in my case) is that the Folfox doses were 3 weeks apart and the FolFiri doses are 2 weeks apart.

With the FolFiri I get a bolus of 5FU in the infusion center then I take a portable pump home that slowly infuses additional 5FU over 48 hours. 

With this latest round of chemo the oncologist wanted a PICC line put in temporarily so they could start chemo as soon as they'd gotten the results of a liver biopsy back.  The PICC line was started by one of the nurses in the infusion center.  The port had to be scheduled through vascular surgery which took a few weeks. 

PICC line is a pain to keep dry (IMHO) plus as you mentioned it requires that it be flushed once a week where they also change the dressing and check to make sure there's no infection. At least that's the procedure where I go.

No such problem with the port.  It only needs to be flushed once a month *if* it's not used. Port is longer term.  No issues with showering or swimming.

I didn't have any hair loss or thinning with the FolFox but was not on 5FU. I started shedding after my 2nd cycle on the FolFiri with 5FU.  I just did my 3rd cycle last week.  I'm having lots of flaking and scalp itches alot but that may be caused by the Panitumumab which tends to cause an acne like rash which in my case started from the scalp down my face, neck, back and chest.  So, not sure if anyone has any of the itching and flaking symptoms with 5FU alone. 

Been browsing Amazon for caps just in case, maybe one with sandpaper inside..

Take care.

Bill

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lizard44
Posts: 409
Joined: Apr 2015

I had no trouble with  hair thinning badly through  my initial  8 Folfox plus Avastin treatments, nor with the 28 radiation sessions with the 5-FU 24/5 pump. I really was  thinking I'd avoided all those nasty side effects, then  I began a regimen of Erbitux  and Irinotecan.  That's when my hair really began thinning badly and like Sue, I began to resemble Gollum with bald spots. I had bought a wig early on in anticipation of hair loss, but found it was  uncomfortable in the summer heat.   Finally, I just had most of my hair shaved off, leaving  it a little longer on top.  Then, in an act of defiance, to show cancer it  did not get the upper hand, I bought some stuff to spike the longer hair and used a temporary dye to  dye it blue. My kids loved it and so did the  doc and nurses in the  oncology dept. The latest regimen had also caused a lot of dry skin and flaking;  when I take my clothes off it causes a little snowstorm of dead skin, so I  keep   a moisturizer at hand all the time and have cut back on showers,   resorting to sponge baths in between  every-other-day showers. The one benefit from the Erbitux is that while I've lost the hair on my scalp I have longer eyelashes than I've ever had in my life.   That benefit is counterbalanced by  an overabundance of facial hair, though- so I also have bushy eyebrows, a mustache and  this morning I  could have sworn I'd have to start shaving a beard or join the circus as a bearded lady! Hopefully all this will pass, the sooner the better!

Right now I'm recovering from a radiofrequency ablation of a liver met done two weeks ago.  Actually,  there were three spots showing on the CT scans, but only one lit up on the PET scan.  The  surgeon decided to  tackle all three, which were  very close together, and ablated an area 3.5 cm total. I understand he    burned the area eight times so I have a nice little area of  charred, necrotic tissue in my liver, but he's confident he   got good margins, so, I'm hoping he's right. I'm stll pretty sore from the ablation, and   feel quite tired frequently, but the  three incisions plus one puncture have healed well and my bloodwork looked good today.  I go for a CT scan tomorrow to see how things are going.

Everyone reacts so differently to different  treatments, that it's hard to  know what to expect, and it's certainly not an easy ride, but it helps to have people here  who have   been through  pretty much the same thing and who are willing to share their experiences. I hope your treament goes well with a minimum of side effects.

Grace/lizard44

 

Bellen
Posts: 281
Joined: Aug 2016

Thank you for all the encouragement and info.  I am looking at wigs - as I'm very pessimistic about chemo and keeping my hair.  Is there any cream/other that helps with itchy scalp or skin, and for the rash?  Also are the chemo cocktails folfox and folfiri acronyms - thought each had 5Fu - one with oxoliplatin (folfox) and the other with irinotecan (folfiri).  Not sure, as tried to absorb lot of info at appt.  I wish I had the confidence to dye my hair blue too - good for you!  Best to all.

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lizard44
Posts: 409
Joined: Apr 2015

Bellen, I've found that   several different things work well, but on different areas and for different amounts of time. When I first began the Erbitux, coconut oil was my moisturizer of choice and it worked well for a time. I used Aveeno ultra calming foaming cleanser and it still works well on my face, but not as a body wash. I began to get red and itchy every time I showered, so I switched to Aveeno  oatmeal soap and Aveeno lotion, which worked well  for awhile, but then the  flaky skin  got too much for them.   The  Erbitux website offers a free  patient self care kit, and I ordered one.  It contained a bar of Aveeno soap, lip balm, travel-size containers of several different products including Lubriderm and Jergens Ultra Healing moisturizer,  suntan  lotion and a nail care kit. They came in very handy.    I also found that Head and Shoulders shampoo worked well as both a shampoo and body wash. For my feet I use a  cream I mixed up of whipped shea and emu oil and slept in socks.  That really seemed to help. It might be a good idea to buy some of the small travel/sample  sizes of several  different moisturizers and see which works best for you. A friend  recommended Argan oil as the only thing that gave her skin any relief when she was on chemo, but it didn't work as well for me.  It's another of those individual things- everyone seems to react differently and what works well for one person my not work for someone else.

Sue answered the other part of your question about the acronyms  folfox and folfiri, but there are also  combinations outside those two. My oncologist says she hasn't even scratched the surface of what is available and what might work  for me as a particular person in a particular situation with a particular  condition. Good luck with your treatment- and don't get discouraged- there is an awful lot of info to absorb- it seems almost overwhelming at times.  But it's also very fascinating.

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Trubrit
Posts: 4781
Joined: Jan 2013

FOLFOX -  Fol = Leucovorin Calcium  - Fluorouracil X = Oxaliplatin

FOLFIRI - Fol = Leucovorin Calcium F- Fluorouracil  Iri =  Irinotecan Hydrochloride

Easy peasy to remember, NOT!

SUE

Bellen
Posts: 281
Joined: Aug 2016

So Sue, do you know if fluorouracil is the 5Fu?  Or would it be added to each of the chemo cocktails if that was the protocol?  Thanks, had to really check the spelling - not easy, as you say.

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Trubrit
Posts: 4781
Joined: Jan 2013

5FU is Fluorouracil. 

SUE

Bellen
Posts: 281
Joined: Aug 2016

Re: itchy skin - I used aloe vera squeezed out of a live aloe vera plant for the bad burning I had from radiation treatments years also. Good thing - no perfumes, etc.  Wonder if it would work for itching as well.  It is not sticky like some aloe vera that I have bought.  Thank you for that advice.  What does one use for rashes, as some have said treatment caused that? May be asking more about other side effects soon, if the group doesn't mind.  Trying to stay positive, but unfortunately because I have had so much "waiting", have been online reading and it is very depressing.  Have to read more positive things to stay positive, so thank you for everyone's posts.  

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Trubrit
Posts: 4781
Joined: Jan 2013

I have a pure Aloe Vera called Abubrey Organics.  I have to keep it in the fridge, as it is the real stuff, with no fillers or gels. You have to apply it carefully, as it is runny. But right out of the fridge on a sore bum is wonderful. :)  

Good luck with the itching. I know many here have had it, so hopefully someone will pop on and answer your question, soon. 

SUE

Bellen
Posts: 281
Joined: Aug 2016

Hi all - Just talked to my Onco and he mentioned having folfuri with avastin as chemo.  He said radiologist said I have about 15 tumours throughout liver - not good news. Just had MRI liver, having colonoscopy next wk, as saying adenocarcinoma with mets to liver, and port put in - chemo starts end of mo. Boy, has taken a long time to get started - and will be travelling few hrs ea way as my own city has been so untimely with almost everything - sad.  Any suggestions on the Folfuri treatment or side effects.  Thanks so much everyone - so appreciate.

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funshine
Posts: 26
Joined: Aug 2016

Hi Bellen,

If you get mouth sores the doc can prescribe a majic mouth wash that helps them heal quicker and it numbs them so you can eat better. Another thing I did was to use coconut oil to pull or swish between my teeth for 10 to 15 minutes before I brushed my teeth. I used bioteen tooth paste, it didnt have the burning effects of regular tooth paste. They also have mouth wash and mouth spray to help with dry mouth without burning the sores on your gums. Make sure you spit the coconut oil out in the toilet because it contains toxins, do not swallow it. It also whitens your teeth!

Another side effect that you might eventualy have when you get the nuelesta shot after you get the pump off after 48 hours. The shot is necessary to keep your white blood cells in the right range to keep you on track to keep getting treatment. The shot will cause your bones to ache. I used take 24 hour Allegra, for allergies,  the day before, the day of, and the day after the shot. It alleviates some of the pain.

best wishes,

Linda

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lizard44
Posts: 409
Joined: Apr 2015

I haven't had the same combination- I had Folfox plus Avastin and am now on Irinotecan plus Erbitux. Diarrhea was  the main thing I was warned about with the irinotecan and the doctor wrote me a prescription for Lomotil (Diphenoxylate-Atropine) in case it was needed, but I've only had to take a few tablets, since the Erbitux causes constipation and they mostly balance each other out.  I'm not sure whether  the irinotecan  works the same  in combinaton with the FU and leucovorin in the FOLFIRI combination. The Avastin didn't cause me too many problems, fortunately, and the nurses  monitored me pretty closely during the first infusion. They began with  an infusion of a steroid to counteract any allergic reactions and then an infusion of anti-nausea and anti-diarrhea meds before beginning the  FOLFOX infusion. I imagine it's the pretty same procedure with the FOLFIRI. I was always pretty wiped out  after the infusion  and slept a lot  after I got home and was usually still somewhat fatigued the day after, but that could be   due to my age, too. My oncologist  and the  nurses are pretty good about explaining  what  drugs I'm getting and why and give  very useful info sheets that list what to expect and when to call the doctor,  you could ask if your team has something similar. One odd thing has been that on  all the infusions, the skin on my face gets a deathly grey pallor on the day of the infusion but then begins to  turn beet red by the next day and feels very hot before going  back to normal, but I've never had a fever with it. You may or may not have something similar happen- as I said before we all seem to react differently. I hope your  chemo  zaps those  liver lesions down to a size where they can be removed or ablated and that it does so  with minimal side effects.

Grace/lizard44

Bellen
Posts: 281
Joined: Aug 2016

Hello Grace - Did you get liver mets after your colorectal original diagnosis?  Sorry, if you have already mentioned this.  Still not sure where my liver mets originated - (biopsy says adenocarcinoma) but having colonoscopy on Mon to check that area.  Thank you to everyone for their suggestions and any info you have shared. Very much appreciated.

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lizard44
Posts: 409
Joined: Apr 2015

I've copied and pasted  what I wrote on my "about me" page: I was diagnosed with rectal cancer following a colonoscopy on April 8, 2015. A subsequent CT scan showed several spots on my liver, the largest being 1.5 CM. The colorectal surgeon said I would be receiving neoadjuvant treatment to shrink the rectal tumor, but he felt the liver spot was probably a hemangioma rather than liver mets. He said he would do a procedure for a port implant for the chemo. He set up an appointment with a clinical oncologist who said I would receive treatment of five days a week 5-FU chemotherapy with radiation therapy to run concurrently. She said she would like to make sure about the liver spots, though and scheduled a PET scan for 5/11/15. I met with the radiation oncologist on 5/12, was all set up for radiation to begin at the same time the chemo began. I told them about the PET scan and they pulled it up on the computer. I could tell something was wrong. The PET scan report showed that the liver spot lit up like a Christmas tree, which changed the whole game plan. I was now Stage IV. I had the port placed on 5/19/15 and the oncologist set me up for a more aggressive chemo plan, and put the radiology on hold.

You also mentioned in another post that you were thin and worried about losing weight.  That was a concern for my docs, too- I weighed 79 pounds when I got the initial colonoscopy, but have managed to maintain a weight  between 82-85 pounds  consistently since begining treatment.  I have rarely weighed over 85 pounds my whole life, with the exception of pregnancies when I once ballooned up to a massive 109  lbs. Smile

Grace/lizard44

Bellen
Posts: 281
Joined: Aug 2016

Hi Linda - Thank you for your info. Had such awful mouth sores with initial cancer had to use a swab instead of toothbrush - had sores under tongue, in throat, everywhere - maybe moreso called thrush. Came on very suddenly. Want to be proactive as I am trying to maintain my weight also - quite thin already, and worried about not being able to eat - already having diff with fullness and discomfort when eat small meals. Is the biotene a toothpaste? Wonder if baking soda would work. And intend on swishing with some mixture ahead of time, although my Onco had said it may not prevent.  

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funshine
Posts: 26
Joined: Aug 2016

Yes Biotene has toothpaste, mouthwashes, dry mouth sprays and other products. They dont prevent but when you have the sores it doesnt add to the pain when you brush. Very gentle and effective. You can use baking soda too.I also had geographic tongue. My tongue would swell and turn white and have strange lines and formations on it. The magic mouth wash dr can prescribe for you helps with the sores. nothing really prevents them. Its just knowing how to deal with them so you can eat and keep your weight up.

best wishes

Linda

Bellen
Posts: 281
Joined: Aug 2016

Hello all - Grace, you said you were able to maintain your weight.  My Onco mentioned giving me a steroid to increase my appetite - were you ever given a steroid?  Any other suggestions? The dietician mentioned several small meals, which I already do pretty much because of my abdominal fullness after eating and also by the end of the daY feeling quite full.  Hoping the anti-nausea or other? might help me to maintain.  Having colonoscopy Mon and port Wed, so finally things are progressing. Will report back after Wed appt with specific chemo plan, and I hope others can share any suggestions that might support my treatment and side effects.  Thanks so much everyone - very much appreciated. Wishing everyone the best. 

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