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2nd treatment of Chemo, Jaundice & Bilirubin up.

KDWalker
Posts: 8
Joined: Feb 2013

Hello, it's been 37 days since the ER found tumors on my Dads' liver & colon.  Only 3 weeks since he was officially diagnosed with Stage 4 colon cancer that spread to the liver.  His liver is struggling so bad, he has been jaundice, has ascites bad (been drained twice) feet, ankles swollen and is soo tired and weak.  he is trying to fight so hard and we are holdiing onto hope but keeping getting kicked down. On the 28th they refused to install the chemo port because his condition was so bad they didn't want ot put him under, so he had a PICC Line put in instead ...  that day the oncologist feared chemo wouldn't help, but left the decision up to us & my Dad and told us if we could get him in on March 4th we could give it a shot (he also set us up to meet with Hospice just in case)   He was able to get in for chemo on the 4th and is went back in today for the 2nd treatment ... my Mom called and was upset and crying because they were again concered because his biliruin is up from 2 weeks ago.   It is so heartbreaking to hear my Mom losing hope ... Does anyone have any advice for us?  This has all happened so fast, just in January my Dad was normal, busy, wiorking the yard none stop and now it's 99% change ... is it normal to go this fast?   has anyone dealt with this fast of a progression?   We're scared and just want some hope to hold onto.  I want to believe his liver can recover with the help of the chemo but would love some input of someone that was been in this situation.  Can anyone help, please?/

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

All cancers are a little different, as are the people that get them.  My tumors progressed significantly between my surgery (was orignally to resect tumor but turned into a colostomy instead) and teh start of my chemotherapy, but then shrank again after doing chemo (12 tx of FOLFOX + avastin).  My bile duct got blocked and my bilirubin went to 10, but they were able to fix that with a drain and now a stent in the bile duct.  I'm feeling very good and the chemo is keeping me stable, but I am not getting the tumor reduction/elimination that some due with chemo.  I am 46 and have no other health problems other than stage 4 colon cancer.  In contrast, the duaghter in law of the minister at our church was diagnosed after me, was only 36, and she passed away a couple of weeks ago.  I have no idea why she did so poorly compared to myself or many others on the forum.  I'm sorry I can't be of more help, but you have my deepest sympathy and hope for better things to come.

Tedd

KDWalker
Posts: 8
Joined: Feb 2013

Thank you for your reply tachilders.  I will ask the doctor about possibly getting a drain or stent.  You are right, all cancers are different and affect people differently,  there's nothing 'fair' about cancer.   i wish you all the luck with your treatment.  Thank you again!

Vancouver
Posts: 16
Joined: Mar 2013

Hi there,

I have never posted before, but wanted to tell you about my mom's experience, which sounds similar to your dad's and hopefully will give you reason for optimism.  My mom was diagnosed at age 77 with Stage 4 colon cancer that had spread to her liver on Sept. 24, 2012.  She had surgery on the colon on Sept. 27.  After that she had to wait 8 weeks until healed enough to begin chemo to treat the liver tumours (which were extensive and deemed inoperable).  Because she was extremely weak and unwell at that point, her oncologist opted for the most mild type of treatment available, an oral chemo called capecitabine (aka zeloda).  Her response was nothing short of a miracle!  Literally within days, she was back to herself.  After one round (she takes the pill for two weeks and then stops for a week), her CEA went from 31 to 6 and her CA19-9 went from 221 to 91.  Now after 5 rounds, with minimal side effects (some hand and foot issues), her CEA is 1.3 and CA 19-9 is 17.    Her liver function tests results after 5 rounds have been equally dramatic:

Bilirubin - was 9, now 10; Alkaline Phosphatase - was 430, now 82; Gamma GT - was 1122, now 31; ALT- was 86, now 22; AST - was 214, now 19; Lactate Dehydrogenase - was 848, now 201.  In other words, her liver function and cancer markers are now all within the normal reference range!  And most importantly, she has been feeling like her normal, healthy self since early December when she began the capecitabine.

She will be scanned next week to see just how much improvement has really occurred and if she now qualifies for other procedures (surgery, ablation, theraspheres, etc) that may offer a longer term benefit.

Perhaps this is a treatment option you may want to discuss with your dad's doctors.  I should note that my mom began on alternative treatments to supplement conventional treatment two weeks after her colon surgery and six weeks prior to starting the capecitabine/zeloda.  These included juicing, diet change (no dairy, meat, white flour/rice), supplements (maitake, mega vitamin D doses, fish oil), and prescriptions (celebrex and metformin, which was actually for her diabetes but is thought to be of benefit in cancer treatment).  We feel that the chemo has been critical in treating the cancer, but the alternative therapy has been critical in how well it has worked for her and for her ability to tolerate the chemo so well.  We hope the diet and lifestyle (exercise, relaxation) changes and supplement regimen will help keep the cancer at bay for a long time.

Her oncologist refer to her progress as a "dramatic response" and as a "Lazarus effect" (i.e., she has virtually come back to life). 

I hope for a similar result for your dad and want you to know it is possible!  Hang in there!

CT  

 

fighting_ big_c's picture
fighting_ big_c
Posts: 60
Joined: Mar 2013

I know it is hard to question oncologists because they are the team captain of our battle. But Vancouver is right, I think you should probably try to open up about Xeloda. My mom is starting her Xeloda treatments soon, and I heard good things about it.

fighting_ big_c's picture
fighting_ big_c
Posts: 60
Joined: Mar 2013

Vancouver, your post gave me so much information and hope. My mother will start her Xeloda soon. God Bless you.

Vancouver
Posts: 16
Joined: Mar 2013

I'm glad my post gave you hope.  Your photo reminds me of my mom and me.  I hope the Xeloda works as well for your mom as it did for mine.

gfpiv
Posts: 48
Joined: Apr 2010

I hesitated to post, because your family is dealing with a traumatic situation, and I know you could really use some good news and optimism.  But I would second a comment provided on another board - you should hope for the best, but prepare yourself for the worst.  Unfortunately, for many of us, colon cancer doesn't show any symptoms until it has already spread extensively...and by then, the body is already weakened quite a bit.  In your dad's case, his liver was very compromised by the time of diagnosis, so it's not completely surprising that he was on the verge of jaundice and ascites.  Sadly, this horrible disease can often progress quite quickly. 

His doctors are probably doing the best they can right now.  To be honest, the best chance of him rebounding, even if only temporarily, is probably to see if chemo will work to help reduce the tumor load in his liver.  Sometimes it works, sometimes it doesn't.  But chemo can also take a terrible physical toll, and at some point it's probably more important to cherish what time you have left.  But that's a very personal - and very difficult - decision for your dad, in conjunction with his doctors and family.  It's important for you to be supportive of whatever his decision is. 

As for other things - IMHO, "alternative medicine" is not something that should be considered at this point; it may be helpful, but too slow-acting.  Odds are that your dad is either getting FOLFOX or FOLFIRI chemo; either of these is a good option.  But do note that both of them already contain 5-FU, which is basically identical to xeloda/capecitabine (except that xeloda is taken orally).

Chances are they they're hoping dad's bilirubin will get low enough to be confident that they can give him chemo without causing more harm than help.  Their options are basically reducing chemo dose, waiting in hopes that his liver will recover, or a couple other minor options like medications and steroids that may or may not help.  Potentially there could be a blockage/stricture in his bile duct system which is preventing the liver from draining - if so, they might see it on a CT scan...for example, his liver mets might be pushing on a bile duct.  But the odds are - especially in the presence of ascites - that it's probably just due to the liver being taxed so much.  And frankly, bile duct stenting may be too invasive a surgery for your dad at this point anyway (I was lucky enough to have a successful stent implanted last month).

I wish I could provide you better news, but I do feel that there is always hope.  Everyone has a different experience with this disease, and with the chemo used to treat it.  I truly wish you and your family the best of luck in dealing with this difficult situation, and I hope that your dad is one of the lucky ones.

-Chip

 

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