CSN Login
Members Online: 5

You are here

CT scan results not favorable

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Well, I had to go ahead and read my CT results on the patient portal, and they revealed I have gone from 3 spots on my liver in December to at least 17. They are growing rapidly. I have yet to consult with my Oncologists, but I am fearing the worst. If I wasn't a candidate for surgery with 3....how can they help me now? My particular cancer spread during my neoadjuvent chemo and radiation. I took Xeloda. I really don't want to spend the rest of my life being miserable on chemo if I can help it. The statistics are lousy both with or without chemo. 

Does anyone have any experience or success stories with so many Mets to the liver? My lungs are clear for now. But this appears to be very aggressive. I am just so sad for my family. Having lost my own mother to cancer when I was 26, I know how devastating this can be. 

I want to keep fighting, just need some inspiration and motivation now. This is so difficult. Thanks, everyone. -Beth

Ruthmomto4's picture
Ruthmomto4
Posts: 663
Joined: May 2013

there are other options for chemo besides Xeloda, possibly even ones specific to your type of cancer.  My husband did not want to do chemo, but he had to. If he wanted to fight he finally had no choice and For him the chemo wasn’t so bad. I know everyone reacts differently. I also know for his cancer the oxaliplatin as much as it sucked was the key to shrinking things. Get another opinion if you need to, i have no idea what your surgical,options are but if you can shrink them sometimes it changes things. Don’t take no for an answer and get in there and find a dr who will help you. 

 

I am editting this to add to add one thing I kept saying to my husband was how hard this surgery was going to be for him and how long the recovery could take. His reply, yep it’s going to suck, for a while maybe even a few months but if it gets me to good and free of this beast for a while I will take the bad to get to the good. 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I won't quit. I will go to a Center for Excellence if I need to. I would just love to remove the larger tumors. My recovery from rectal resection was tough, but I'm thinking liver might be even tougher. And I haven't tried the oxilaplatin yet, but I have seen that it sometimes is key to the battle. I need to keep an open mind, as the natural stuff is making me feel great but not touching the cancer yet. I can't wait too much longer. 

I sure appreciate your comments. Thank you. And may God shine down on all of us. 

abita's picture
abita
Posts: 833
Joined: Dec 2017

I have to agree with try oxaliplatin. In 4 rounds, it shrunk my tumors by almost half. I am about to switch to irinotecan. I am told that it has totally gotten rid of tumors in someone. There are many alternatives. I am so sorry that your doctor didn't check your progress sooner.

Ruthmomto4's picture
Ruthmomto4
Posts: 663
Joined: May 2013

traditional and non traditional? I know you feel great  and that’s awesome! But you know you what you need to do, no one can make that decision or choice but you.   

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

This is an awful turn of events. There are clinical trials but I've seen that here can be minefields with those too. The chemo is no picnic and nobody wants to stay on them forever. The Oxaliplatin may help but it's pretty hard on most people. I have seen some where the side-effects were mild but they were the few.

greg98466
Posts: 21
Joined: Mar 2018

Beth good greif I wish they would get better at killing this,, I will pray for you its all I can do...

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I really need to chill out until I meet with my doctors in the coming weeks. But I want to be prepared. I have looked into some clinical trials and there few if any available for my particular cancer. We have Karmanos nearby and they may have some different ideas. 

I believe in the power of prayer and positivity. You are all in my prayers daily.

I'm going to pick up a book now to inspire me. As long as I can keep doing things, I need to go out and do them. Don't want to wallow around the house. 

Macdougal's picture
Macdougal
Posts: 18
Joined: Dec 2017

They‘ve never bothered to count all the mets in my liver & it’s a very aggressive cancer.  

My oncologist is treating them aggressively back with folfoxfiri + avastin.  It’s working quite well, my bloodwork is good and the largest tumors have shrunk by 30%.  I feel good and work full time.

Moving quickly on this before your liver metabolism gets too messed up is a good idea.  I accepted the risk of high chemo and tolerate it well except the neuropathy from the oxaliplatin is starting to build after round 10.  

Good luck, be aggressive back and take care of yourself.

-Doug

abita's picture
abita
Posts: 833
Joined: Dec 2017

Remember, if the side effects are too bad, you can stop. Deciding to see if another drug works doesn't mean you must finish all the rounds. 

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Beth:

I am stunned by your news and all I can do is let you know that there is someone in Tennessee praying for you.

Jim

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

So sorry   you didn't have better results. But do discuss  all options wih your oncologist.  My first CT scan showed several  lesions in my liver but only one  lit up on the  subsequent PET scan. It shrank when I was on FOLFOX plus Avastin, then grew 18% when I was on   5FU alone.  My onc  switched me to  Erbitux and Irinotecan and the liver tumor shrank enough to be ablated. When the liver surgeon did the ablation he also zapped all the little  hypodense lesions as a precaution. My oncologist told me in the beginning  she has a whole arsenal of  weapons to use and while we may one day run out of ammunition, we plan to keep the beast at bay for as long as we can without sacrificing quality of life. I have a CT scan scheduled for next month so we'll see how everything is working then.  So far I've been lucky in not  having  a lot of nasty side effects from the chemo or radiation.  I hope if you do   decide to go with  more aggressive chemo treatment that you'll also be able to avoid any debilitating side effects. I'll be  keeping you in my thoughts  and sending positive energy.

Grace/lizard44

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

I'm so sorry hear your bad CT scan result, Beth. It could be hemangioma or a fatty liver that they all show spots on the scan. Don't fret until you have discussed it with your oncologist. I like what Ruth said above...you have to take the bad to get to the good and that's what chemo does. I know Oxaliplatin is very harsh but it does its job. Mean time keep yourself busy until you meet with your oncologist. Thinking and praying for you! 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I sure appreciate everyone's advice and support here. This place has truly saved my sanity on so many occasions. It's the one place where I can cry out for help and get advice from people who can empathize. 

I do feel good overall, and consider that a gift and a means to keep fighting. That and my husband, 5 children, grandchild,  my 4 siblings and wonderful friends. Whether it's months or years, I need to keep living. 

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Beth -  You and your family are in my thoughts and prayers...

You are so strong and focused... Keep fighting and living...

Cindy

     

Trubrit's picture
Trubrit
Posts: 5226
Joined: Jan 2013

You are allowed to feel overwhelmed every now and again. But you're a fighter and a positive one; and that can only be good. 

Lets see what your Onc has to say now. Some of those spots could be unrelated to Cancer. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

So sorry to hear that news.  I'm hoping that your team of doctors can give you something other to try.  There are others on here that have given you much advice on your situation and others that will.  You need to just get with your doctor and get some questions answered and a plan moving forward.  You can also get a second opinion if you think your doctor doesn't have your best interest in your long term plan.  Wishing you the best and you are in my prayers.

Kim

plsletitrain
Posts: 253
Joined: Jul 2017

is our most powerful weapon in battling this so I'll include you in my prayers.  I will also pray for your discernment to come up with the decision.  I am not a strong advocate of chemo but I did it anyway because if its the reason to keep the beast at bay, I'll take the risk.  The side effects for me were not debilitating so don't be afraid to go with it.  If you can combine it with alternative therapies, you can also do so, that is, if your onco is fine with it and it won't conflict with the chemo.  I've had chemo but I integrate it with TCM and some other herbs.  I don't know what's inside of me as I'm due for a PET scan soon but I'm just happy that I'm still alive.  Keep living beth, news like these puts us down but I know you'll get up and put up a fight. 

zx10guy
Posts: 266
Joined: Dec 2013

Consider contacting Dr. Nancy Kemeny at MSKCC in NYC.  She has specialized in treating people with difficult liver metastatic spread.  She invented the HAI pump procedure which has helped people control their liver tumors and even get to the point of being able to have surgery.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

I sure appreciate all of your comments, thoughts and prayers. My husband and I are starting to discuss what we do to prepare if I lose this battle. And that is actually making me feel more relieved. I worry more about my family than myself. I need to focus more on me for sure. I've tried to resume normal activities and need to make some changes now.  Fortunately, God has granted me the opportunity to do this. If I survive? Win win. LOL

PamRav's picture
PamRav
Posts: 282
Joined: Jan 2017

regarding your scan results.  I hope you will find a treatment plan that you are comfortable with and that kicks this cancer’s butt.  Don’t be afraid to get a second and even third opinion   

I was dx back in Dec ‘17 with stage IV With 3 mets to the liver.  My initial chemo had oxi in it.  It only took 3 doses to shrink the mets to an operable condition.  I am fortunate that I have no residual effects from the chemo. 

I wish you peace and strength 

 

pam 

 

Canadian Sandy's picture
Canadian Sandy
Posts: 654
Joined: Jul 2016

Sorry about the not so good news. My prayers are being sent your way. Keep being positive and believing in miracles, Beth.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Beth, Someone on this forum once told me “we fight because that is what we do.” 

Know that I am sending you photons of positivity and prayers during this Holy Week and Easter season. 

There are many chemo drugs. Praying that one will prove to be super effective against your cancer. 

Love and Light to you!

Phil

beaumontdave's picture
beaumontdave
Posts: 1077
Joined: Aug 2013

I'm sorry Beth, that's harsh news to hear. Bring on the Oxi, if you haven't yet. I'm one who got through it with minimal effects, but in the longer view, I'd go with zx10guy's idea and contact that liver pump Dr. at Sloan. I think PhillyG went there as well, but some have had remarkable turnarounds with the HAI pump. Your in my thoughts..............................Dave

LSU2001
Posts: 26
Joined: Dec 2017

I too am fighting stage 4 rectal cancer.  When I was diagnosed/staged, I was told that I had 8 major lesions/tumors on my liver in addition to the tumor in my upper rectum that led to all of this.  In addtion to the 8 large lesions I had numerous other lesions spread throughout both lobes of the liver.  I was told then that I was inoperable and that treatment would be mainly pallative in nauture was meant to try and extend my life as long as possible but average was 2-4 years.  I looked at the doc and told him straight up, I am 48 years old, we have to come up with a better plan.  So I started out with a 5 FU infusion pump 5 days a week while I underwend radiation therapy for my rectal tumor. This was done mainly to try and alleviate the severe pain, rectal spasms, and tenesmus.  At that time I was taking morphine extended release pills with liquid morphine available for breakthrough pain.  The radiation therapy relieved those symptoms within a week and a half of treatment starting.  As time went on of course the radiation had it's own effects and while miserable it was manageable with creams, etc.   

Once the radiation therapy was over, I started on Folfox with Avastin and overall tolerated it well.  My tumors responded well to this regimen and I was able to keep working full time while on chemo but had to fight through the fatigue and nausea I had right from the outset.  

Fast forward through 14 Folfox treatments and because I had been looking around our local hospitals for a liver surgeon willing to take a shot at a resection and having no luck, I asked for a referral to MD Anderson for a second opinion.  Went over there for a week of scans, tests, doctor's appts. etc.  when all was said and done, the Onc. at MDA pretty much confirmed my diagnosis and prognosis stating that I was on the right chemo regimen and that the results of the treatment showed a great reduction in the size of my tumors BUT he could still see no way I would become operable but he would present my case to the liver surgeons and see what they said.  

About a month after that visit, I get a phone call from the Onc at MDA, telling me that the liver surgeons think that they can help me and my liver.  I went back to Houston for another round of scans, tests, etc and a visit to the liver surgeon.  Their plan was to operate with a two stage resection with a portal vein embolization in between the two operations.  I was elated and sheduled the first operation in Febuary of 2017.  That surgery went well as did the portal vein embolization two weeks after the operation.  When the pathology report came back about the tumors that were removed, it was great news, on of the tumors was completly 100% inactive and dead.  the other three they removed were 90% necrotic and were mostly inactive/shrinking.  The second operation in April was a tougher recovery mainly because the took out the entire right lobe of the liver including the gall bladder.  I devloped some ascites and had to get on lasics for awhile.  But in the end the liver grew back and the new prognosis was that they were now looking at a curative intent in the treatment.  

It is now almost two years since my original diagnosis, and while I had a recurrance of a few small lesions on the liver and am now on folfiri with avastin, mainly due to the neuropathy caused by the 18 folfox treatments.  I have also had two microwave ablations on smaller hard to resect lesions and prior to the recurance there were no lesions on my liver.  giAnyway, after all of that, the docs sent me to the colorectal surgeon to evaluate my original rectal tumor.  More tests, more scans, more probes etc. to find out that the primary tumor demonstrated a complete response to treatment and was now healed with healthy tissue with no evidence of cancer activity.  

I said all of the above to say that despite fighting the side effects, the treatment was well worth it.  I most probably with be left with permanent neuropathy in my hands and feet, I hope the chemo brain and other milder side effects go away if I ever get to NED and get off chemo for awhile.  That may never happen but at least the disease is managed and they have finally addressed my two main side effects of treatment mostly continious nausea/quesy feeling and fatigue.  

My main local Onc accepted a position at a New Orleans hospital and I had to choose another doc at my local cancer center.  I wasn't too worried because MDA was managing my case and the local cancer center provided treatment and watched over me during the treatment cycles.  Anyway, I had been fighting the fatigue and nausea for a long while and nothing seemed to help inculding marinol, zofran, aloxi, etc.  The new doc noted right away that I had been anemic for many months but not so low as to stop treatment.  He orderded 5 iron infusions prior to and during my first folfiri treatments.  He also said my nausea did not sound like regular chemo induced nausea and that it really sounded like gastritis to him.  He put me on two zantac a day and lo and behold the fatigue and nausea went away completly.  It is amazing that one doc didn't even address these issues as long as it didn't intefere with treatment and another doc "fixed" the long lasting side effects within two weeks of our first meeting.  

So here I sit feeling great on pretty much a daily basis, still taking chemo but no problem at all.  The folfiri has not caused the feared diarrhea, in fact I have to take a daily dose of mirilax to keep things moving LOL.  

Just my experience and opinions,  

Tim

abita's picture
abita
Posts: 833
Joined: Dec 2017

WOW! What a wonderful story! Amazing.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Tim, great to hear your experience. I was very pleased with my rectal tumor surgery. It would be good to consider getting myself to a place where I'm a candidate for liver surgery or whatever treatment might help! You had a number of times where you could have given up, but you kept fighting. I really need to do the same.

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Thank you for sharing that uplifting and promising experience.  And, congratulations on your perseverance and victory.

Jim

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Thanks Tim for telling your story and re-inforcing the importance of second opinions and being your own best advocate. It gives us all so much hope.  

Keep fighting on! 

Cindy

steveja
Posts: 41
Joined: Apr 2017

Well that s*x.   But don't get too hyper till you see a PET scan.  A CT will show some sort of nodes in anyone (the resolution is too good).  They saw an increase in lung nodes on by CT last November.  PET scan was incoonclusive (too small).  Then in February they had vanished.   They suggested swollen lymphnodes from infection.

Also - there is recent work on 'typing' CRC,   Differnt types respond variably to diffrent tretments.

https://journals.lww.com/oncology-times/Fulltext/2018/03200/The_Four_Colorectal_Cancer_Consensus_Molecular.4.aspx

This "waitng for a diagnosis" stuff  is a nasty roller coaster ride emotionally, just missing  the seatbelts and safe ending.

 

best wishes

Marley1983's picture
Marley1983
Posts: 16
Joined: Jan 2018

Sending prayers and strength.

Subscribe to Comments for "CT scan results not favorable"