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22 year old daughter just diagnosed with Stage IV CRC

kman_houston
Posts: 4
Joined: Sep 2016

My wife and i are beside ourselves. Our 22 year old daughter with Crohn's just had her colon removed (small tumor on colon during biopsy) and now has an ostomy bag which she is fine with. During surgery they found additional cancer on her peritoneum. Everything I read scares me immensely about outcome. In any event, they want to start her on FULFOX in 2 weeks just after preservering some of her eggs. The reviews on FULFOX are not pleasant either.

Our doctor at MD Anderson (Houston) provides me with little feedback other than to say he's sorry about the situation and we need to start chemo. I've read that typical chemo does not typically work with Peritoneal cancer and she might, (he said might) be a candidate for HIPEC but that oftentimes that surgery does more harm than good according to him. Anybody here have any history with this type of cancer success (secondary peritoneum cancer) and or HIPEC. She's only 5'3" and 110 lbs.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

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 Many are grossly out of date.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

kman_houston
Posts: 4
Joined: Sep 2016

Thank you so much Sue. A lot to comprehend for a parent. I will check back.

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abrub
Posts: 2131
Joined: Mar 2010

See about consulting with one of them.  Dr. Fournier is the name that comes to mind.  Ask for additional consultations.

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beaumontdave
Posts: 1062
Joined: Aug 2013

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

kman_houston
Posts: 4
Joined: Sep 2016

Dave - Thanks. We are assigned to the CRC team there. Should I just ask for another CRC ONC's opinion?

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funshine
Posts: 26
Joined: Aug 2016

It never hurts to get a second or even a third opinion if your gut tells you this isnt the doctor for your daughter. Just by talking and asking questions and I mean as many questions as possible will you know if this is the doctor whom you want to be on your team. It takes a team to fight this disease.

Dont feel like you have to go with the first and only oncologist your assigned. This is your and your daughters life, get out and talk to other doctors to see what other options that might be out there. I talked to three different oncologists before I decided on one.

best wishes.

Linda

 

danker
Posts: 1253
Joined: Apr 2012

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

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kristasplace
Posts: 956
Joined: Oct 2007

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

kman_houston
Posts: 4
Joined: Sep 2016

Thank you. Where can i find more info about you and what questions should i be asking?

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beaumontdave
Posts: 1062
Joined: Aug 2013

To know anyone's history, click on the name given. When you get a chance, fill the "about me" out. This saves on repeated questions and answers.....................................Dave

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kristasplace
Posts: 956
Joined: Oct 2007

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

 

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traci43
Posts: 775
Joined: Jul 2007

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

mccabrera
Posts: 2
Joined: Sep 2016

Hello.  I'm in a similar situation. My daughter was diagnosed with Stage V colorectal cancer (5 months ago) at age 28. She had her colon removed and now has an ostomy bag which she is also fine with. As soon as she was diagnosed the doctor ordered a Port and had her start chemo 4 weeks after her colon surgery. I have a list of the chemo drugs she received and I think its the 5FU chemo. She finished her first cycle of chemo a week ago and luckily it went well. She had very managable side effects. It took her about two days to recover from chemo and then she was fine. She recently had a PET and CT scan and the results were not what we hoped for. They found spots: 3 in pelvic area, one high up on the thigh muscle and one near her kidney. I don't know the exact details of the results yet--we have an appt on Monday to speak with the doctor in depth. He did recommended a HIPEC and wants to refer us to another doctor. This is where we are at so far. I've been researching HIPEC since Tuesday, when the doctor recommended it, and writing down lots of questions.  We go to the Sylvester Cancer Center in Miami and so far I think they've been very good. However, I'm in the process of trying to get a second opinion for the HIPEC.  Can you please let me know the name of the HIPEC doctor at MD Anderson if you know it? 

I'm so sorry your family is going through this. I know this is extremely difficult and heartbreaking...

 

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traci43
Posts: 775
Joined: Jul 2007

There is a Dr. Esquivel in Baltimore and Dr. Fournier at MD Anderson.  On the west coast there's Dr. Lowy at UCSD.  Dr. Sugarbaker developed this surgery but last I heard he was getting ready to retire.  Best to find somone that has done a lot of HIPEC surgeries, at least 150.  That's when folks tend to have better results according to the research I did in 2009.

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tanstaafl
Posts: 1292
Joined: Oct 2010

Basically their (some cancer centers) big gun is HIPEC.  Some chemo, maybe 1-2 tries surgically, and they are done.

We were able to kill off my wife's initial peritoneal spread with a sharp immunological reaction, probably driven by cimetidine and some heavy supplements with preliminary evidence levels.  Oncology's basic bloodwork is stuck at some 20th century HMO level, mostly CBC with differential, ca Chem14, CEA.   To compare and to assess the situation better, informed patients would at least add panels like CA19-9, LDH, ESR, hsCRP, fibrinogen and 25 hydroxy vitamin D to the basic CRC bloodwork. 

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

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.

msan8431
Posts: 3
Joined: Sep 2016

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....

msan8431
Posts: 3
Joined: Sep 2016

if you have any other questions you can reach me at santiago2015fm@gmail.com

i dont really know much scientifically but im going through a similar case ...i asked about folfox as well and i reccomend u ask about getting it switched to folfiri...they just switch the oxaliplatin to irontecan? not sure but the oxaliplatin has alot of sideeffects...i had none really ..my hair thinned out alot but regardless i had alot of hair...my face broke out occasionally well my forhead in tiny little pimples...i had diareah also occasionally and food became bland...somethings i cant tolerate ...sort of like pregnancy..i used to eat everything i craved..good or bad....i think some people will be against this because they believe (including myself) nutrition has alot to do with your health BUT i read in a blog about another cancer patient that she ate everything she craved because its better to eat and gain weight than not eat because you dont have appetite aside from what your craving...hard for me to explain things i ramble alot even in person but i hope u understand what im saying....your daughter will be okay...i received alot of prayer and did alot of praying and i truly believe Jesus Christ still heals people to this day.....im an example...not just healing me but providing me with everything including the meds to do so....and to be honest before i got sick i wasnt religous whatsoever but i found comfort in Him and knowing there is an eternal paradise where we can be once we pass...alot of people may not believe but as of recent God had proved me right and all my faith has been increased...

a song u can play for her or reccomend to her is Oceans by hillsong united..it helped me alot through out these last months...just listening to it

nateswife's picture
nateswife
Posts: 65
Joined: Sep 2016

Hi, I just wanted you to know that what you wrote encourages me to have hope. It sounds like you have a good perspective on suffering, which is impressive. I dont think I would have had a good handle on such tough circumstances at the age of 22. It's awesome that God is helping you through this is a tangible way so you know it. 

I also love that song, "Ocean". My favorite fight cancer song is "Overcomer" by Mandisa. 

msan8431
Posts: 3
Joined: Sep 2016

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....

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Not to be a jerk but 22!!!! COME ON LIFE!!!!!!!!!!!!!  Wow I'm so sorry.  It's not easy.  She's young so that gives her body an advantage for healing.  She stands a good chance of beating this.  People have beaten stage IV. Ask for second opinions.  Fight hard, make it a family affair to change your diet for support and that includes at parties, learn what the carcinogens in life are, for example, bbq on the grill is a carcinogen.  Learn what the power cancer fighters are for example brocolli sprouts (so much more potent than brocolli itself), and stick to the plan you come up with her doctor.  Read, read, read.  My friend goes to a holistic (medical) doctor in addition to her oncologist.   He guides her in what vitamins she is missing, helps her with her diet.  He's an actual MD only holistic, he doesn't treat with meds (I'm in no way suggesting you don't give your child meds).  In addition to chemo and rad (I did both but I also changed my diet) someone like that can really help with diet and making sure she gets the correct vitamins she needs.  It's covered under health insurance these days.  Most of all, don't listen to statistics.  Did you know they include in the statistics those who have died of heart attacks and other unrelated issues?  The statistics are garbage.  Get her going in the right direction and everyone participate with her so she feels support.  Cancer is really hard mentally and physically and she's going to need that.

http://www.health.com/health/gallery/0,,20430736,00.html

http://www.mindbodygreen.com/0-13850/heres-how-to-avoid-carcinogens-when-youre-grilling.html

 

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