22 year old daughter just diagnosed with Stage IV CRC

My heart is heavy for you

I am so sorry to hear of your daughter's situation, and so very young. 

Be real careful what web sites you go to for information. Many are grossly out of date. Also be careful of reading random blogs, they can be very scary, and truth is, treatment effects different people in different ways. Some breeze through their chemo regime, working and not be overly effected; and others suffer every side effect under the sun. While it is good to know what side effects may happen, its also good not too worry about them until they happen. 

This site really is a wonderful place, as you have many folks and caregivers across the board, so you can get a more balanced idea of what is on the books for your daughter. 

My advice is to take it one step at a time and not rush ahead. 

I'm thinknig you may mean FOLFOX as the treatment. A mix of Folfuril and Oxaliplatin. The Oxi is a heavy metal chemo, and it can present you with a vast array of side effects.  I did nine rounds of FOLFOX followed up with the 5FU pump. I survived, though it wasn't a fun trip, for sure. 

Your daughter has her youth to help her. It really pays being young and healthy. 

Other here can tell you more about HIPEC, as luckily, that wasn't on the books for me. 

Keep popping back. Others will chime in along the way, though it may take a few days or so. 

Your daughter is a lucky girl, to have her dad reaching out for help. 

SUE

You say stage iv crc, so this

You say stage iv crc, so this is metastasis to the peritoneum. Folfox didn't leave permanent effects on me, though others say it did with them. It didn't stop mets to my liver, but they've been removed. Maybe the doc you spoke with doesn't know all the options. I'd talk to others at Anderson as well. There are people who have dealt with that type of met, that come here. Perhaps they will respond. Your daughter's youth will help through the chemo and other treatments, though It's sad that anyone so young has to fight this battle. I hope they give you all better answers and options, and you let us know what they might be.......................................Dave

oncologist

I fired the Oncologist assigned to me and got a new one that I loved for 6 yrs!!

Sorry you find yourself here

I'm so sorry, my heart aches for her.  Sue provides some really good advice.   I'll add some information on side effects and HIPEC. There are many Stage IV colon cancer patients here and some of us have been around for some time.  I was diagnosed 9 years ago with mets to the peritoneum and ovaries and am currently 2 years in remission. 

If she is going to do chemo, get a medical port ASAP.  It really saves your veins and makes taking home a pump of 5-FU for two days easier.  FOLFOX is not great, but it's not the worst either.  There are many side effects but not everyone gets every side effect.  For 5-FU it's mostly nausea and tiredness, and they give you medicine for the nausea. For Oxyaliplatin, it's cold sensitivity and neuropathy.  She will need to wear gloves to touch cold things and no drinking cold water, although one member skipped that by drinking cold water while being infused.  Avastin is frequently given with few side effects.  There is another regimen, FOLFIRI, with 5-FU and Irinotecan replacing Oxyaliplatin and the main side effect is diahrrea--sometimes controlled with lomotil. (sorry if the spelling is off).  5-FU comes in IV and pill form-Xeloda.  The IV is more tiring but is usually the first choice.  I've had both and the Xeloda side effect is mostly skin issues with the hands and feet that can be controlled fairly well with lotion.  Taste and smell will likely be off.  There were times I craved protein or other foods and I usually went with whatever tasted good.  I usually stayed home while being infused but worked much of the time.  I even did a daily 6 am boot camp for 4 months while on chemo Xeloda and Oxyililpatin before my second surgery, the HIPEC one.  I just didn't work out on infusion days.  FOLFOX or FOLFIRI infusions are usually a 5-7 hour day.  It's much shorter when taking Xeloda instead of 5-FU infusion.

I've had HIPEC and it's a tough one but I came through well.  The problem is that it makes your insides sticky and that can be difficult for future surgeries.  Of course any abdominal surgery can result in adhesions, but HIPEC almost guarantees it.  Most folks have their gall bladder removed, evidently it does not do well after HIPEC.  HIPEC is usually done at the same time as tumor removal, I'm not sure of the efficacy afterwards.  You are in an amazing place as MD Anderson has a great HIPEC doc.  I'd get a second opinion from him.  I know one woman, not on this site, that had HIPEC 7-8 years ago and has been cancer free ever since.  I know of woman, who wanted HIPEC but just had regular tumor removal surgery, that has been cancer free for the same amount of time.  Both were stage IV with mets to peritoneum, one in her 40s the other in her 30s.  It's taken me 2 additional surgeries to have a lengthy remission, now two years. 

You'll find a lot of great support on this board from patients and care givers alike.  Again, sorry you are here, but hope you find the support you're looking for.  Traci

kristasplace said:

Other options...

Welcome to the board, though I'm very sorry for the reason you're here.

I don't know anything about peritoneal mets, but I do know that there are other options for her that the doctors can't tell you about. If she is unable to do chemo, or simply chooses not to, it does NOT mean all is lost. It could mean the exact opposite. I won't get into a long post about how I treated mine; I have a thread on here that explains most of it, but I can definitely tell you that if you do enough research, and get her involved in it, too, you will discover a whole other world out there of survivors who didn't do chemo. Some lived for a long time, and others never had another problem with cancer.

We're here for both of you if you have questions about ANYTHING to do with CRC. Believe me, there are people on this board who can answer the questions your doctors can't, or won't. I discovered that after asking my first question!

Best wishes and warm hugs,

Krista

Discussion board

My post is in the main topic area that you first reach when you enter the board. I think the title of the post is, "Stage IV survival without chemo...it happens". That, I think, tells most of my story. It took me years to find all the info I needed to get me going, but I can recommend some great resources here, such as "Anticancer: A New Way of Life", by Servan-Schreiber. He was an MD who survived brain cancer for more than two decades. Very, very, enlightening. Some of the other books I read were, "Buddha's Brain", by Hansen and Siegal. Not about cancer, but an important teaching of how our brains function. This taught me how to calm much of my inner thoughts and how to deal with stress (very important for cancer patients). I used a book called "The Live Food Factor" extensively as a reference for altering my diet. Two documentaries that motivated me were, "A Beautiful Truth", that I found on Netflix years ago, and "Fat, Sick and Nearly Dead". Those will definitely help. There are a lot more, so let me know if you need anymore help with it. I have a book of my own that I periodically offer as a free download on Amazon, but I really need to revise it. If it gets pulled, I can send you a copy when it's revised. Hopefully that will be soon. 

If you want any info on Traditional Chinese Medicine, check out John23's profile page, and I have no doubt that if you have questions about it, he'll answer them. He is very knowledgable.

Hugs!

Krista

 

I forgot about the cimitedine

That is really supposed to help the sread of cancer cells, especially right after surgery.  I used it for over a year after my last surgery.  Folks like Krista, John 23 and tanstaafli have has some good response using alternatives to chemo.    Through them and others I've learned to look for different treatments and to not just accept what your onc suggests without looking further.  I now take many supplements.

cc: kman_houston

hi i am also 22 years old with cc stage 4 with mets to peritoneam and lungs!

 i just finished my 12 chemo treatments about 3 weeks ago and had my maintence treatment of avastin given biweekly last week.

 

i was diagnosed in feb and had surgery march 1st which was supposed to be a laparoscopy and they were going to remove the lower part part of my bowel but unfortunately the cancer had spread all over my abdominal cavity and my surgeon decided to just put a ostomy bag on me and reccomended chemotherapy.

 

he didnt think i was going to make it, not that he said it but after surgery my bf said his face looked troubled and my bf asked how long i had to live and he said not long.....i was diagnosed with a rare form called signet ring cell carcinoma which i hear is very aggressive from what i read...

 

i dont know much else..just that i had ascites because of it which they took 8 liters out from my abdomen during the surgery and a month later..half seperately ..and i had that same malignant liquid in my lungs...

anyway i was placed on FOLFIRI With avastin for 6months and as of 2 weeks ago i guess you can say Im NED ...no cancer activity on my body and the tumors are gone according to the pet scan...my oncologist says its like night and day compared to the first one...

 

 

i honestly didnt think id make it this far...by the time they diagnosed me i was feeling extremely ill..mainly because of the fluid in my abdomen....i recovered quick from surgery and a month later they put me on chemo...

one thing i reccomend for your daughter is to gain weight....eat anything she craves during chemo because a sign the cancer is taking over is weight loss and she needs all the strength she can get...she needs to gain weight....if she doesnt shes going to lose weight regardless because of the chemo and she needs her body to be as strong as possible...also something i didnt think of was vitamin d..before i was diagnosed my vitamin d level was 7 ...its needs to be above 31 but vitamin d helps the body fight cancer as well...on my 10th treatment i remembered that i had low levels and i asked the dr and he told me what i just said...he placed me on 50,000 iu of vitamin d? its a prescription not over the counter but this will help  also my mom would make beet apple and carrot juice for me...if ur daughter like vegetables juicing will do her body good....after a couple treatments my iron levels became low so i had to get an iron infusion and i think hydration...be strong for your daughter , if she sees you worry you have no idea how it can affect her...no matter what be strong and never let her see u cry....it was hard for me initially seeing my mom worry but she stopped and also my dad and they always encouraged me to not my body give up...also dont be scared...

no one knows what the outcome maybe aside from God and he always has the last say....be positive for her and shower her with love...she needs to be strong not just physically but mentally...i asked my surgeon how long i had and he said he couldnt tell me...but as soon as my mind gave up my body would give up right after....i always remembered this throughout everything...i never let myself give up....

cc: kman_houston

also before the surgery i requested to just have my colon taken out but the surgeon denied my request...for one because he is the doctor not me but he said it would do more harm than good because i wouldnt absorb all the nutrients i needed and also both him and my oncologist said i dont qualify for HIPEC...i never asked why really but i figure they know why....my take on it is that once it spreads all over and they go in there they can spread it even more to other parts it hasnt spread to....i dont think my  liver was affected...i didnt know alot of everything that was wrong with me until recent...which i think helped me alot not knowing the extent because i was positive through most of all..of course there were days where i would find out bits and peices and cry because of course i was scared so i always and still remain thinking that its better not to know so your body can use the energy you would spend worrying differently....