Mom most likely to be diagnosed with Stage IV Colon Cancer

annalexandria said:

Chemo is by no means fun,

but it is doable.  I've known a number of people who worked while doing it.  Full disclosure...I personally got hit hard by side effects, but many people have a much more manageable experience.  And even with my "outlier" case, I did have at least a week or so out of every cycle (mine was chemo every three weeks) when I felt decent and was able to live quite normally.  We took a lot of weekend trips when I did chemo, despite feeling crappy at other times.

And the typical first chemo for colon cancer would be FOLFOX (two drugs, 5-fu and oxylaplatin); if your mom is on something different, side effects may vary.  But typically you would experience nausea and diarrhea, fatigue, and neuropathy (numbness and tingling in the hands and legs).  You can also get this weird cold sensitivity in your mouth and hands that makes it pretty much impossible to consume cold drinks or get stuff out of the fridge with bare hands (I wore thin gloves a lot).

But they will give your mom a lot of drugs to help with these side effects, and she should take them religiously.  The key to avoiding a complete wipe-out is staying on top of the symptoms before they get too bad.  And it's also important to stay in communication with her doctor.  Dehydration is a common problem, and she will be able to get IV fluids at her clinic, so long as she lets her team know what is going on.   I could have avoided a couple of trips to the ER if I had known in advance to call my doctor if I started to feel dehydrated.

Once she gets started on treatment, you will no doubt have more questions...and we will have more advice!  We've all been through this, and your mom can get through too.

Hugs to you both~Ann Alexandria

hi Ann Alexandria,

Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

Christie

annalexandria said:

Chemo is by no means fun,

but it is doable.  I've known a number of people who worked while doing it.  Full disclosure...I personally got hit hard by side effects, but many people have a much more manageable experience.  And even with my "outlier" case, I did have at least a week or so out of every cycle (mine was chemo every three weeks) when I felt decent and was able to live quite normally.  We took a lot of weekend trips when I did chemo, despite feeling crappy at other times.

And the typical first chemo for colon cancer would be FOLFOX (two drugs, 5-fu and oxylaplatin); if your mom is on something different, side effects may vary.  But typically you would experience nausea and diarrhea, fatigue, and neuropathy (numbness and tingling in the hands and legs).  You can also get this weird cold sensitivity in your mouth and hands that makes it pretty much impossible to consume cold drinks or get stuff out of the fridge with bare hands (I wore thin gloves a lot).

But they will give your mom a lot of drugs to help with these side effects, and she should take them religiously.  The key to avoiding a complete wipe-out is staying on top of the symptoms before they get too bad.  And it's also important to stay in communication with her doctor.  Dehydration is a common problem, and she will be able to get IV fluids at her clinic, so long as she lets her team know what is going on.   I could have avoided a couple of trips to the ER if I had known in advance to call my doctor if I started to feel dehydrated.

Once she gets started on treatment, you will no doubt have more questions...and we will have more advice!  We've all been through this, and your mom can get through too.

Hugs to you both~Ann Alexandria

hi Ann Alexandria,

Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

Christie

janderson1964 said:

It sounds like they got it

It sounds like they got it all. That is a good sign. Hopefully it will never return or at least give her several years NED (No Evidence of Disease).

BTW, I am an 8 year stage IV survivor who is currently NED. Hope that helps.

hey Janderson!!

the more I read, the more I am encouraged.  so happy for you and all who are survivors.  And yes, IT HELPS!!!  

Christie

annalexandria said:

I had the pump,

connected and infused on Tuesdays, removed on Thursdays.  Your mom will need to be there for several hours the first day, only a quick visit on disconnect day.  I found that I didn't feel too sick those three days, it was on the weekend that I got really sick.  By the following weekend I would be feeling better, and have a pretty good week after that.  But that was on a 3 week cycle.  I wonder why they want to do it in 2 weeks?  If it's the same dosage of chemo that I got, it seems like it won't leave much time for recovery.  Might be worth asking about, as everyone at  my clinic was on the same cycle that I was with this particular treatment.

One other thing to keep an eye on...the neuropathy caused by the oxylaplatin can be bad, and long-lasting even after tx ends.  My doc said to tell him if it got to the point where it wasn't going away toward the end of the cycle, and he would reduce the dosage, or even remove it all together for the last few cycles.  It apparently only accounts for about a 5% difference in outcomes, and the long-term neuropathy can be really bad.  I think it's one of the symptoms I hear mentioned most often on these forums...it really bothers people when it hangs on for months or even years.

Will she have someone to drive her to and from chemo?  That's really helpful if available.

And I was also wondeirng if they had confirmed that the "soccer ball" sized tumor was actually a met.  Those giant ovarian tumors are often benign, in my experience, so I was just wondering if they had done the testing on it to confirm things.

ETA that I'm also stage 4, NED for 21 months (knock on wood).  It can happen, so stay as hopeful as you can.

So I haven't been on the site at all because mom came home from the hospital on September 7th & had her stapples removed yesterday, the 16th.  Mom is doing very well and I want to thank everyone who has posted back to me and supported my mom and me to this point!  Anyway, mom and I were a little shocked when at the surgeons office yesterday, we were told that 5 of 15 lymph nodes removed were cancerous.  Right after the surgery, I was told they were positive for "indicators", not positive for cancer.  Anyway, I guess we were shocked when he said that meant that there is a 40-60% chance that the cancer will spread.  Mom & I still have an extremely positive attitude, but I have to admit, now having numbers makes it harder and my extended family, to put it bluntly, is freaking out. 

Has anyone been in this situation?  I know that once diagnosed with cancer, you have it and it is never gone, and you look for NED on tests.  I guess I don't exactly know what I am asking...maybe, I am asking, does that percentage make a difference?  Would she still be treated with Chemo if there was no cancer in the lymph nodes???

Thanks & blessings to all<

Christie

daisey1 said:

Chemo for Colon Cancer

I was diagnosed with stage 4 colon cancer in June 2013. It has spread to abdominal cavity, and have a very large mass which is not removable.  I too had a colectomy,

removed right side of colon, cecum, appendix etc. and was reconnected.  I had surgery on July 1, started chemo on August 8.

 

I am taking Irinotecan, 5FU and lucovoran.  The irinotecan, lucovoran are done through picc line in arm every two weeks in chemo clinic, then I come home with a tube of 5Fu for 2 days. This treatment is for 6 months every 2 weeks. The chemo drugs make me nauseated for about 5 days, very weak and tired. I was on oxaliplatin which had horrible side effects, they had to change it to Irinotean.  I have had 3 treatments and am going in for 4th treatment next week.  Starting to lose some hair at this point.  I have a very possitive attitude and  very supportive family and friends that help me get through this.

I went in to chemo thinking the side effect would be worse than they are, so tell you mom to hang in there.

Darlene

Thank you Darlene,  all of the information you are all provding me with is helping with all of the building anxiety.