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Probably just wishful thinking, BUT.....

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Has anyone ever heard of someone having Stage 4 colon cancer w/ tumors in the liver that are BENIGN?.....Yeah, I know, probably just wishful thinking, but thought I'd ask anyway. Jason went today for a biopsy of one of the tumors in his liver since the chemo that shrunk the primary colon tumor 50% hasn't done diddly for the ones in his liver, so they did the biopsy today to see exactly what kind of tumor(s) they are dealing with to know what kind of treatment he needs. I know in my heart that the tumors are cancerous, but I didn't figure it would hurt to ask & see if anyone has heard of colon cancer with "benign" tumors in the liver. Crazy, I know, but my heart can't take much more bad news.....btw, we'll get the results of the biopsy in a few days so maybe I can live in a dream world until then. Undecided One last thing.....CANCER SUCKS!!!!!!!!!!!!!!!!!!!!!! P.S. I love ALL of you for the support you've given me, so I can in turn give it to Jason. It's just SO hard knowing what the reality is, but not wanting to accept it. I'm not trying to sound like "oh woe is me", because obviously everyone on this site is here for the same reason, whether it's being a patient or a caregiver, but I was my mothers caregiver for almost 18 years & I lost her in 2011 which is the hardest thing I have ever gone through & now it's Jason....it's just not fair. OK....sorry for venting. (((HUGS))) to you all! Kris

traci43's picture
traci43
Posts: 411
Joined: Jul 2007

This is the place where we come for support, patient and caregiver alike.  Cancer does suck, it blows, it's unfair, however you want to put it.  We all know it because we've been there and we are here for you as well.  Don't worry about venting, we all do from time to time.  It's necessary to get through this.  Hopefully, venting can give you some peace while you await the biopsy results. I hope the results are good.  Let us know when you find out.  Traci

geotina's picture
geotina
Posts: 2042
Joined: Oct 2009

Once when George had a liver biopsy it did come back negative, necrotic (dead) tissue.  Unfortuntely, the onc then ordered another liver biopsy from a different area and it was positive.  George had a drastic spike in CEA so we knew something was definitely going on so it was off the mainenance chemo which he had been on for more than a year and back to the hard stuff.

One never knows until you get the results. 

Take care - Tina

janderson1964
Posts: 1503
Joined: Oct 2011

It is always a possibility although a slim one. I know i asked you this before and I think you sais it wasnt operable becaus it was too close to the hepatic artery.look up Nanoknife. It is a new proceedure for just that purpose. It is an electrical probe that is inserted into the tumor and burns holes through the cancer cells. Unlike RFA or other similar treatments. Nanoknife does not damage the surrounding tissue

jen2012
Posts: 1185
Joined: Aug 2012

It's not fair and cancer does suck!!   I'm sorry Kris - no idea about the tumors, but I'll say a prayer that they will be benign!

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Jason went for chemo today, which didn't happen because he is running a fever (probably from the liver biopsy), so they put him on antibiotics & postponed his chemo for 2 weeks. The doctor said the biopsy results showed that the tumor(s) in his liver ARE from the primary tumor in his colon, & also he is negative for the KRAS gene, which apparently is good because there are more treatment options available. So.....so much for the tumors being benign. Just gotta keep praying that the new chemo regimen he is on will do the trick, & if not, hopefully they can do some other kind of treatment. ((((HUGS)))) to you all! Kris

thxmiker's picture
thxmiker
Posts: 1198
Joined: Oct 2010

We are sending our thoughts and prayers for Jason to find the treatment that is right for him.  Folfiri w/Avastin worked very well for me.  Folfox was punishing and did not work very well.   

 

Keep up the good attitude it is needed to get through cancer. 

Best Always,  mike

 

PS  I believe my diet also had a lot to do with my Chemo Success. Fight the battle on many fronts.

annalexandria's picture
annalexandria
Posts: 2172
Joined: Oct 2011

there are folks out there who have had good success with chemo, even with extensive spread.  The fact that he has more tx options is great, and you never know when something else is going to come up.  There is still hope for Jason, and you've always got us to "talk" to when you need it.  Who understands better than us what you're going through?  I lost my mom in November (although not to cancer, and she was pretty elderly, but still a hard loss), and my sister to cancer eight years ago.  I totally agree with you...cancer sucks.  Hugs to you both~AA

traci43's picture
traci43
Posts: 411
Joined: Jul 2007

Sorry that it is a tumor.  At least you have many options, and being KRAS negative is good, at least in terms of drugs to go after the cancer.  Your posts are sounding better so I hope you are doing better dealing with your husband's diagnosis.  I always find the waiting for test results the hardest.  Once I know the score and can formulate a game plan I'm much better.  Hope the FOLFIRI knocks the tumors down.  I never had the Neutropena problem with Irinotecan but that could be because I could not tolerate a whole dose due to uncontrolled diarreha, or could be because I had xeloda instead of 5-FU.  I did have to take neulasta shots when on FOLFOX after 12 rounds.  Hope things go well, keep us posted.  Traci

tootsie1's picture
tootsie1
Posts: 5001
Joined: Feb 2008

I know these are not the results you wanted. Praying the doctors will have some wonderful ideas about how to deal with it all.

 

*hugs*

Gail

Trubrit's picture
Trubrit
Posts: 1290
Joined: Jan 2013

but prayers, love and support, yes. 

This is where you can comer to vent. You deserve to vent, we all do. 

This isn't not a fun journey, all of us at different place (I was going to say stages, but I didn't mean the stages of cancer, some of us doing well, others fighting hard. 

My prayers are with Jason and yourself. Live with the dream of the turn our being benign, and then reality when the results are in. 

God bless!

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

so sorry you two are having such a hard time.  Sometimes in the battle you get to a place and you think.." I can't take anymore"

but then you get a little break and on you go.  Jason has a couple of weeks here with his antibiotics so try to just take a tiny break..chemo will come and you do not know what good things may come of that.

as everyone says....never be afraid to whine complain or just generally sound off.....we can take itSmile

good to have more options for chemo......take best care...maggie

 

 

 

Annabelle41415's picture
Annabelle41415
Posts: 4190
Joined: Feb 2009

Have been thinking of you both since I've read this post and I'm just hoping that his new treatment will help.  My thoughts are with you both as your journey through this new path.  I'm glad that he doesn't have the bad gene and this will give me more options.  Hope your doctor gives you some great options.

Kim

 

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

I had asked a while back if anyone had heard of "tumor fever" because Jason had fevers off & on...? I posted that he had his liver biopsy Tuesday, woke up w/ a fever Wednesday, so no chemo & was sent home on antibiotics.....now for the REST of the story.....his fever had gone away but then around 8:00 in the evening he asked me to take his temp. again because he wasn't feeling well....101.7. He took Tylenol but his fever just kept climbing, so I called his doctor & he said just to go ahead & take him to the hospital, thank god he called the ER ahead of time & told them that he was being admitted which meant we didn't have to spend the better part of the night & morning 'waiting', so he got to his room & apparently the Tylenol hadn't done anything, his fever was 102.8, then went up to 103.1....THAT was scary. Doc gave him some kind of steroid & believe it or not it brought his fever right down.  Anyway, they did blood cultures, urine test, more blood tests, another CT Scan & a chest x-ray, & according to the oncologist all of the tests they did was negative for any kind of infection, & no change in his CT Scan & x-ray from the last one, so it was concluded that when they did the liver biopsy some toxin/bacteria must have strayed & that was what was causing the fever. Dod said in other words he had "Tumor Fever".....So, apparently that's a real affliction. Tongue Out We also learned that his WBC count was low, which he had never had a problem with while he was on the Oxaliplatin, but he got his first round of Irinotecan a couple of weeks ago so now he is gonna have to get the "Neulasta" shot to keep his WBC counts up. Has anyone had the same problem w/ Irinotecan? He has a follow-up appointment Wednesday to get the shot & also to see if he will be getting chemo that day or if they are still gonna wait another week. (btw, they gave him 2 hard hitting antibiotics while he was in the hospital, so unless the fever comes back he no longer has to take the ones his doctor gave him earlier on Wednesday.) So, if he tolerates the Irinotecan well he will probably have to get the neulasta shot after each chemo treatment. Sorry this is so lengthy. (((HUGS))) Kris

renw's picture
renw
Posts: 282
Joined: Jan 2013

I have had a fever every late afternoon till early morning for the last 6 months. Its somehow caused by the tumours themselves in my case anyway. It ranges from 37.5 to 39 Celsius. Nothing much that I can do about it and has become the new normal. 

Chelsea71
Posts: 1167
Joined: Sep 2012

Hi Ren,

I follow your blog and therefore understand that your situation is becoming increasingly serious. Steve's liver is quite the mess, as well. Fatigue has been his latest problem. He has so many other issues going on that it's hard to know to what to attribute the fatigue. The fatigue seemed to set in during the time that his ALP jumped to 350. So I am thinking it's the liver mets causing this symptom. He has always stayed strong through exercise but the fatigue is making hard for him to muster the energy. I am worried that he will fall into a downward spiral and cachexia will set in and that will be the end. I am curious about you. How is your energy level? Is fatigue an issue?

Actually, I just read your most recent blog entry and I must say, I find your blog to be quite riveting. It is definitely more exciting than the David Baldacci novel that I am currently reading. No disrespect intended. I would have never expected a port infection to be such a blessing. You've had a rough go of it, time for a positive turn around.

renw's picture
renw
Posts: 282
Joined: Jan 2013

I can't judge by fatigue as I started experimenting with phoenix tears last week, and I now sleep a lot during the day. My liver has been swelling up a lot latelly, but looks like PT are helping with this. Nausea returned last week too, which I am sure is liver related. Being active seems to help, so I try to force myself, but that is quite hard specially with PT. I have poor tolerance to it thus far, but trying to build it up. Start 2DG tomorrow and have high hopes for this drug. I'll update the blog in the next few days. fun fun

Re cachexia, with all the treatments I have not has much chance to follow a regular training regime. I am noticing significant muscle mass loss again. Its a battle, keep it up and don't give up.

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

On the Irinotecan, by the third time my WBC went down, never had on the other chemo.  I had to get the Nuelasta shots as well.  You get the Irenotecan one day and then 24 hours later you go back for the Nuelasta shot, you have to do this after each dose of Irinotecan.  The nice thing, is it lets your hair grow back shortly after the shots start.

Glad his fever was taken care of.

Winter Marie

Chelsea71
Posts: 1167
Joined: Sep 2012

It seems to me that anyone having significant liver metastasis seems to experience tumor fever. Comes on late aft, early evening, gradually climbs and breaks in the night. For Steve, this started two weeks after his last Folfiri session. It was one sign (out of several) that suggested to me that his cancer was progressing. Fatigue set in, as well. The nurses on the cancer ward say they see a lot of it. Tumor fever is very common in blood cancers and lymphomas. It is also seen frequently with cancer that has metastasized to the liver.

annalexandria's picture
annalexandria
Posts: 2172
Joined: Oct 2011

in the six months before I was dx'ed, i ran a daily fever. For several months, just a degree or two, and then as I got sicker, I started spiking fevers of 102-103 (but I think those were due to the fact that I had peritonitis, from my tumor eating its way through my colon).

After I had surgery, the fevers went away and didn't return until I had a recurrence the next year.

So I do think these fevers can just be part of the body's response to the cancer. It's too bad that it's not always enough to do in the SOB.

Chelsea71
Posts: 1167
Joined: Sep 2012

Taking Steves evening temp has become quite a hobby (or perhaps obsession) for me. Last Folfiri was May 1 (no fever while on Folfiri). Two and a half weeks later evening fevers develop. From 37.8 - 39 degrees celsius. Had Folfox on Thursday and since then the highest his evening temp has been is 37.0. What this means, I have no idea. I just find it interesting.

Dyanclark's picture
Dyanclark
Posts: 245
Joined: Apr 2012

 

I have been trying to get on CSN all week.  Poor Jason all I can say is we will keep him and everyone on the site in our thoughts & prayers.  

My husband did ok on the  Irinotecan just some nausea and he lost his hair, I think he did 5 treatments .   I know all of this stuff is so overwhelming especially when you both are not getting a break.   Hang in there,

Hugs George & Dyan

hippiechicks
Posts: 302
Joined: Sep 2012

Hi Kris ... first I would just like to say I am sorry to hear of Jason's new battle.  I am also on Irinitican and need to have the nulasta shots with each treatment as I did with Folfox as well.  The shot is life saving, but does make me feel rather poorly for a day or two after.  Very sore.  Deep bone pain, fatigue, no appetite and nausea. 

Wishing you both well.

 

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