stage 4 cancer - cancer cells resistant to chemo, need opinions

What a wonderful daughter you are to seek help and information for your mum. 

I am sorry for her disgnosis. Cancer, like allot of serious diseases, is a hard road to tread. 

You are so right about different chemo treatments affecting people in different ways. Fo me, FOLFOX, 5FU & Radiation worked (so far), along with the surgery which I was blessed to have on liver and colon. 

Certainly the neuropathy in hands and feet can become severe and needs to be monitored. My hands went purple (I have a picture somewhere on the forum. Will post it if I find it) and totally numb. My feet also. I have lost strength and some fine motor skills in my hands (I drop things constantly) and my feet are still fairly numb. Not as bad as they were at first, but far from being normal.  Its not a good stage to get to, so keep an eye on it along with your mum's Oncologist. 

I also agree wtih getting a second opinion. There are new surgeries out there, depending on the extent and placement of your mum's tumours. Ablation and Y90 for liver mets are a fairly new option and worth talking to a liver surgeon and the oncologist.  I had an ablation on a 2.2 cm tumour in my liver almost THREE years ago. 

Others will be along to share their wealth of information. 

Stay strong for mum.

TRU

is  probably a KRAS (protein coding gene)test to see if epidermal growth factor receptor (EGFT) blockers Erbitux(cetuximab) or Vectibix (panitumumab) have a chance of working. About a third to a half of  patients whose tumor tissues have KRAS mutations do not benefit from those drugs, whereas some patients with “wild-type” KRAS do. The reasoning is that these are powerful drugs with some severe side-effects (as Jan can tell you) and there is no good reason  to use them on patients who most likely won't benefit from them.

I  also was diagnosed with stage 4 rectal cancer with mets to the liver.  I started treatment with FOLFOX plus Avastin which shrank both tumors but also gave me the neuropathy, then had radiation with  5-FU, the rectal tumor all but disappeared but the liver tumor grew and I was switched to  irinotecan and Erbitux. the liver tumor decreased in size  so that I was a candidate for a radiofrequency ablation. I'm still on the Erbitux and Irinotecan and if and when they  stop working, the oncologist said she has more combinations to try. All this to say, there are new drugs and new combinations of drugs being tested and tried and hopefully the regimen chosen for your mother will keep the cancer under control of cause it to go into remission. And as you already noted,  different people can have very different reactions to the same drug.  The  ox in FOLFOX is oxaliplatin, and that can cause some nasty side-effects like  neuropathy and a severe reaction to cold.  I was told to avoid ice cold drinks, to wear gloves when reaching into the freezer or fridge and to  keep my feet warm, so I wear socks all the time, even to sleep in. One other problem that sometimes arises during chemo is a drop in white blood cells to the point that  chemo  may have to be delayed for a cycle or two or the count raised with Filgrastim (Neupogen^®),Peg - Filgrastim (Neulasta^®)orSargramostim (Leukine^®).  Several here on the forum, including me, have had to get daily Neupogen shots to raise  white blood cell counts.

I hope yur mother does well with her treatments and that you and your siblings don't suffer too much stress in dealing with it all. Ask questions of your mother's medical team and make sure they explain the possible side effects  and the best way to deal with them. Make sure also that your mother lets them know  about any severe reactions or side effects that might make it necessary to delay treatments or lower dosages. It's a hard road to go down, but there are so many people in this group who have been on that road and  are happy to share information and offer support to help you avoid some of the potholes and obstacles along the way. And most of them do it  much more succinctly than I do 

Grace/lizard44

I have CRC mets to liver - have numerous liver lesions - told inoperable.  My Onco was deciding between folfox or folfiri for treatment. He decided on folfiri + avastin.  My chemo cocktail is avastin, leucovorin, irinotecan, 5Fu push, and 5Fu bottle hooked into port for 2 days.  Has the Onco talked about having folfiri if she is resistant to folfox.  They are similar - but folfox has oxyplatin and folfiri is irinotecan (1 1/2 infusion).  Most on this site have had folfox - not sure why my Onco decided on folfiri.  After 3 mos had CT scan - report said still numerous liver lesions, but "markedly reduced" - so my Onco said this was positive news, and I have continued on same chemo - just had my 11th, and will have CT after 12th.  Will report again with results - hope some positive news.  Best of luck to your Mom.

Sam, I would ask the doctor if the KRAS test was done (as mentioned by Jan and Grace). For me Erbitux proved to be a very effective drug in my battle. Also, there are a other drugs used. I believe one is Avastin. 

Also, if you have any inkling about needing a second oppinion I strongly encourage you to "just do it."

In my research MD Anderson was the number two cancer treatment center, followed by Sloan Kettering. Although I also read that the top 50 ranked cancer treatment centers were all excellent and all good choices.

I go to University of Michigan Health System and I have been very comfortable with the doctors and medical staff there.

There are lots of rankings out there if you google a bit. Here is one showing rankings comparing 2000 to 2015.

http://www.beckershospitalreview.com/quality/best-50-cancer-hospitals-then-and-now-who-ranked-where-in-2000-compared-to-today.html

Good luck and God bless you and your mother.

Yeah NY isn't too far from here, but so my mom already decided to go to Anderson and she said that if this doesn't work out she doesn't want try else where bc too much traveling I guess.

MD Anderson and Memorial Sloan Kettering were listed as #1 and #2 in recent surveys (always grain of salt).  In terms of travel NYC would be closer (?)  A car ride instead of plane and worth checking in a few places.

By met do you mean metastasis as in a tumor/mass? How come the met grew by the time chemo was done? Also what's IIIC? That's good to hear about your met results, so are you on remission now ever since your surgery?

I had no indication of cancer, it was found when checking something out.  (Long story)  When found the scans indicated suspect spots (possible metastasis) to lungs, liver, kidneys.  Had the colon surgery and it was large tumor with heavy lymph node involvement.  One of the items in my lungs seemed to change size during chemo, mainly shrinking.  

But as being monitored it looked to grow (maybe) about 6 months after chemo was done.  About 9 months out, it was clear it grew. PET scan and CEA indicated issue, had the surgery and confirmed that it was a met to the lungs.  But it was already there before it was known I had cancer. The othe spots have not changed, touch wood.   With the number of cancerous lymph nodes I had, if I get away with one met, I am considering things pretty darn good.  So bascially the chemo knocked down the size of the cancer that had spread to my lungs and maybe stopped anything further from developing.  Chemo was not a picnic, but if I had to go for periodic FOLFOX (without one part now due to having some neuropathy from Oxiliplatin portion) and it keeps the other things down if they are cancer, it is doable.  I did many things while on chemo.

Had a good blood test a couple of weeks ago.  Next set of scans in about a month.  

Staging is https://www.cancer.org/cancer/colon-rectal-cancer/detection-diagnosis-staging/staged.html

Basically it goes from I to IV with some letters.  Do not get concerned with the stats and the rest, there is a lag time based on the last time the stats were determined.  It is also age and health based.  I am IIIC (would be IVA if they were able to tell the lung at the time), but you would not know I am sick basically.  Handled the chemo relatively well (click my name to see description) and feel pretty good.

So bottom line, ask questions, get answers and come here to vent, yell, laugh and the rest.  Many good people here with a lot of advice and good ears to listen and help.  Sorry you and your Mom are going through this....