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

yim64

Hi guys,

My name is Sam and I'm new to this network. My mom who is 52 yrs old was diagnosed with colorectal cancer stage 4 back in July. The cancer has spread to her lung, liver and lymph nodes. She has been taking Folfox and has done radiation treatment twice and she has been doing this every two weeks. After her first pet scan, we were told that she gained new liver masses but we kept with it because the doctor suggested so and recently after her second pet scan, we found out that the cancer cells have become resistant to it. So we are going with Xeloda (oral) 500mg which actually she took for a short period of time before starting Folfox but the problem was it was making her hands and feet numb which apparently can become permanent and for that exact reason we stopped because her fingers were turning discolored purple. On that topic, is there a way to prevent this or reduce the effects of this? Also, I'm not sure if asking people what chemo they were taking for colorectal cancer would make a difference because I'm assuming chemo that worked for others doesn't necessarily mean it will work the same for my mom but I just wanted to get opinion's on what would be best for us to do now. I forgot to add, the doctor said it would not be possible to perform any kind of surgery as well so we can only rely on chemo/radtiation. I'm also looking into getting second opinions and we were thinking NIH or Anderson in Texas but that is pretty far as we live in VA. I'm not sure if this forum allows to get into specifics such as discussing hospitals if not that's okay. Let me know if you guys have any questions or need clarification, any help is greatly appreciated~

 

Best,

Sam

Trubrit

Good daughter

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

JanJan63

You sound like you've

You sound like you've educated yourself quite a bit. Good for you. Not knowing is the worst part of this kind of thing. I also feel that there has to be more options and a second opinion may help. It can't hurt. I wonder if they can do a test to see what chemo would work best for her. My tumour was removed three years ago but it's kept somewhere and they recently tested it to see if this new chemo I'm on will help. Maybe they can tell with a blood test or something?

I had the neuropathy from oxy in the Folfox two years ago and still have it a bit in my feet but it's gradually going away. As you said, it's different for everyone.

My best wishes for your mom. I think it's actually harder to be a caregiver than to be the cancer patient. Emotionally, anyway.

Jan  

yim64

Trubrit said:

Good daughter

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

thanks for the reply. yeah I

thanks for the reply. yeah I'm really worried about the next steps because when she goes through with Xeloda, what if the numbing of fingers/toes gets too bad that she has to stop, then what? I'm really at a loss of words right now..

yim64

JanJan63 said:

You sound like you've

You sound like you've educated yourself quite a bit. Good for you. Not knowing is the worst part of this kind of thing. I also feel that there has to be more options and a second opinion may help. It can't hurt. I wonder if they can do a test to see what chemo would work best for her. My tumour was removed three years ago but it's kept somewhere and they recently tested it to see if this new chemo I'm on will help. Maybe they can tell with a blood test or something?

I had the neuropathy from oxy in the Folfox two years ago and still have it a bit in my feet but it's gradually going away. As you said, it's different for everyone.

My best wishes for your mom. I think it's actually harder to be a caregiver than to be the cancer patient. Emotionally, anyway.

Jan  

yeah I'm going to ask about

yeah I'm going to ask about the blood test, but shouldn't they also have done that at the beginning already? At least I would hope, because otherwise why pick folfox? Although actually now that I think about it i think the doctor said these were the strongest (folfox, xeloda) and because of her serious condition (stage 4) they wanted to go with a strong chemo, but if this is what they recommend and shes become RESISTANT what else is there left to try honestly? yeah it's very hard on my siblings and I

lizard44

The test Jan mentioned

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

Joan M

Sam,

Sam,

There may be some very good cancer centers closer to you if traveling is a problem.  If you are able to travel, finding the best medical care available will definitley help you feel better about the level of care your mother is receiving.  

I was diagnosed at stage 4 colon cancer last spring.  I thought I had to travel to the big cancer centers to get good medical care.  I had an appointment at MD Anderson, and while talking to them before traveling there I found out that they were going to use the same chemo combination as the doctors here were already using on me.   A few months into my treatment, I went to Mayo Clinic in Minnesota for a 2nd opinion and he agreed that it was the best treatment for me.  Since then, the tumor in my colon has disappeared, and the other tumors have shrunk. I am now eligible for other treatments such as ablation and radioembolization for the liver tumors.   

I live in ND and didnt even realize how lucky we here are to have doctors that trained at the big centers - my primary oncologist trained in Pittsburgh, and my interventional radiologist trained at John Hopkins, an MD Anderson in Texas.  My previous oncologist had also worked at MD Anderson.  So there are plenty of skilled doctors in smaller cancer centers around the country.  You can usually find out where the doctors trained on the medical center's websites.   

Best of luck to your family!

Joan

 

Bellen

Chemo alternatives

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.

NewHere

Will Write More

But NIH is near you and so is Memorial Sloan Kettering (relatively speaking) in New York.  MSK is where I go and I am fortunate I am in NY area.  But when I got my news, I went straight there without a second thought. One met was too small to be sure on my initial diagnosis, but it grew when chemo was done.  So I was diagnosed IIIC, though could be IVA.  Had substantial lymph node involvement, with suspect spots in lungs, liver, though I may have gotten lucky as of now and only one lung met, rest may not be.  The two year anniversay of my first sugery was two weeks ago.

Phil64

Sam, I would ask the doctor

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.

yim64

lizard44 said:

The test Jan mentioned

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

Hi Grace, thanks for the

Hi Grace, thanks for the response, I will definitely ask the doctor about the KRAS test. I just assume that the doctor would have done this before deciding on a chemo treatment? at least I would hope. My mom had the same side effects as you with the sensitivity to cold but the neuropathy not as much, that was only present with the first chemo cocktail we had. Something you didn't mention though, she lost all her hair. My mom also couldn't receive treatment one tie due to low white blood cell count, but now she is taking a short break from chemo because she is actually going to go visit Anderson in Texas next week and they told her to stop chemo for now, maybe they want to perform some test on her? 

Yeah we're all trying to hang in there but it's hard especially after the news with the cells becoming resistant, also she'll be taking a break from chemo for about a month which kind of is worrisome too just cause her condition is very critical and we don't want it getting any worse. thanks for the support I'll be sure to keep you and the rest of the users on here updated~

yim64

Joan M said:

Sam,

Sam,

There may be some very good cancer centers closer to you if traveling is a problem.  If you are able to travel, finding the best medical care available will definitley help you feel better about the level of care your mother is receiving.  

I was diagnosed at stage 4 colon cancer last spring.  I thought I had to travel to the big cancer centers to get good medical care.  I had an appointment at MD Anderson, and while talking to them before traveling there I found out that they were going to use the same chemo combination as the doctors here were already using on me.   A few months into my treatment, I went to Mayo Clinic in Minnesota for a 2nd opinion and he agreed that it was the best treatment for me.  Since then, the tumor in my colon has disappeared, and the other tumors have shrunk. I am now eligible for other treatments such as ablation and radioembolization for the liver tumors.   

I live in ND and didnt even realize how lucky we here are to have doctors that trained at the big centers - my primary oncologist trained in Pittsburgh, and my interventional radiologist trained at John Hopkins, an MD Anderson in Texas.  My previous oncologist had also worked at MD Anderson.  So there are plenty of skilled doctors in smaller cancer centers around the country.  You can usually find out where the doctors trained on the medical center's websites.   

Best of luck to your family!

Joan

 

I agree, luckily my mom is

I agree, luckily my mom is able to travel so she made an appt to go visit anderson so she's flying out there a week from today for her appt on March 8th. She got a chance to speak to them over the phone and I believe they said they had two chemo's that we've never heard of but we're not too sure. She'll get more details when she goes there I guess. Yeah it seems since the cancer has spread the only option we have is chemo but I'm hoping we can shrink it so we can be eligible for some of the other radiation therapy treatments. A lot of people are saying Anderson is good so I'm really banking on that but since they said they'll be using chemo and really, how "different" can there chemo be from other good hospitals in other states? I don't doubt Georgetown hospital in DC which is where we are currently going to (well our doctor is honestly so-so) but the treatment she gets, I don't doubt it. And I feel they could have the same chemo treatments as Anderson but who knows, we'll just have to see I guess. 

yim64

Bellen said:

Chemo alternatives

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.

that's good news that your

that's good news that your liver lesions are shrinking! on my mom's report it basically said "overall, cancer is progressing"... so that was harsh to read. I'm honestly just hoping Anderson pulls through but I don't know, I don't want to get my hopes up though..

yim64

NewHere said:

Will Write More

But NIH is near you and so is Memorial Sloan Kettering (relatively speaking) in New York.  MSK is where I go and I am fortunate I am in NY area.  But when I got my news, I went straight there without a second thought. One met was too small to be sure on my initial diagnosis, but it grew when chemo was done.  So I was diagnosed IIIC, though could be IVA.  Had substantial lymph node involvement, with suspect spots in lungs, liver, though I may have gotten lucky as of now and only one lung met, rest may not be.  The two year anniversay of my first sugery was two weeks ago.

Yeah NY isn't too far from

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. 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?

yim64

Phil64 said:

Sam, I would ask the doctor

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 I'm definitely going to

Yeah I'm definitely going to ask about that. My mom is going to Anderson next week so hopefully we'll hear something positive then. She wants to just try Anderson and if that doesn't work, she just wants to stay put with Georgetown. It'd be nice if she could check with Sloan Kettering as well but she says it's too much traveling and whatnot.

NewHere

Some More Info

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....