My mom was recently diagnosed with stage 4 cancer

Kanort

Hi Valerie,

I am so sorry for your mother's diagnosis, but she is so blessed to have you as her advocate. Knowlegde is powerful and you are on the right track finding out as much as possible about her illness. I agree with the other about a second opinion. It's important to have faith in her medical team. Please keep us posted on your decisions.

Hugs,

Kay

marym29

Hi Ms. Valerie,
My name is Mary and I am from WI... And although my mom's husband has been with her through thick and thin; I am still a major caregiver and educational advocate for her through this journey of this terrible beast.

Long story short (if that's even possible! ha! ha!) My mom was diagnosed with Stage IV colon cancer this past January. She had surgery to remove the cancer in her colon; which had also spread with tumors in her liver and lungs.

Then, she received a very abrasive chemo regimen for the past 8 month of 5FU, Avastin, Oxaplaitin, and Levoriquin (please forgive my spellings on these chemo names).

She also lived those 8 month with a colostomy bag to give her colon a rest and "hopefully" make the chemo regimen more tolerable (which it did).

With all of this treatment she received many PET and CT scans to keep an eye on the tumors in her liver and lungs. After about 3 to 4 months of treatment a CT scan was done and the tumors in her liver and lungs had shrunk over 25%. Then, towards the end of her treatment they did another CT scan and the tumors had remained the same - but hadn't grown or spread (which was good news, too!_

But I "must" tell you that through this entire process; my mom's oncon. "never once" told her she had ??? amount of time to live. And I truely believe in my heart and soul - and through the support and strength of the people on this website - that it is up to the person to beat this beast!

My mom right from the start went into "fight mode"! She told us that before her first surgery patiently waiting in the operating room she "right then and there" left everything else up to God.

Because of her strength, determination, and spirituality she has made it this far and her oncon. calls her one of his "miracle patients" so...

OMG.. so much for the "long story short", huh? I'm sorry about that; but I just wanted you to know that if you need me at anytime for anything - from one caregiver to another - I am here for you always!

Much Love,
Mary from WI

Betsydoglover

valeriec said:

Hi Betsy,
I am overwhelmed in a good way by all the responses I have gotten from this network of great people. My mom did folfox first, but her cancer progressed on that treatment. Her onc started back on only Avastin/Xeloda because my mom was severely depressed and I think her onc wanted to start back slowly. She has completed 5 avastin and 3 Xeloda. She is getting ready to do another PET Scan on Oct.26th. God, I pray that it is good. Major anxiety over that. I hope that soon they will add in another chemo because from research that I have done it seems like they are not treating the cancer aggressively enough. Do you mind me asking what kind of treatments you receive? Did you stay with your first onc or did you look around? My mom's onc is not very encouraging. Look forward to hearing back from you. Have Faith, Valerie

Valerie -

I was diagnosed late may 2005 - colon surgery early June - stage IV with met to the liver.

I had six cycles of Xeloda/oxaliplatin/Avastin - essentially no evidence of disease after the second treatment - I have had no treatment since my last cycle which started at the end of November 2005.

I wish the best for your mother. I was lucky in that I liked my initial oncologist (she really seems to be an advocate for me), but in a minute I would have looked around if I were concerned. Remember - you (your Mom actually) are the boss. The oncologist cannot be expected to sugar coat everything, but if he/she takes away hope (and there really IS hope), then they are not working FOR you - start looking for another one.

Take care,
Betsy

valeriec

chynabear said:

Hi Valerie,

Your mom is very lucky to have you looking out for her!!! I am sorry that your family has been touched by the beast. But, as you have figured out, we are a great network of support and figuring things out.

Don't ever feel afraid that you are asking too many personal questions. Many of us are very open about our disease and treatments.

I was DX the day after my 27th birthday. My cancer had spread to one lymph node right at the surgery site. I just hit two years post surgery and the meeting of NED (no evidence of disease). There is hope. As long as you (or your mom) have a breath, there is hope.

While I completed my surgery and all of my chemo treatments in Texas because of convenience and family support, I live in Colorado and am doing all of my follow-up and testing with a dr in Denver at the Rocky Mountain Cancer Center. Shortly before my treatments were to end, my husband was approached by a fellow employee who was just dx. His wife and I spent many hours on the phone. She did plenty of research for our area and found this dr based on his credentials and such. Send me a message at this site if you are interested in his information.

Also, start looking at some alternative approaches, i.e. nutrition mainly and possibly juicing. What can it hurt? Really, if you start learning about nutrition, it just makes sense the important role that it plays in our lives. Plus, there are some awesome advisors and advocates right here on this site who have even cured their cancer, and even stage IV cancer mainly with nutrition. You should look into the book Beating Cancer with Nutrition by Dr Patrick Quillin. Great, easy to understand information. There are a few other's but I can't think of them on my exhausted brain.

As others have said, seek a second opinion. A great saying on this site is "Expiration dates are for dairy products and odds are for vegas." Your mother's doctor has no right to take away her optimism.

Hope I didn't ramble too much. I am very tired and off to bed. Just wanted to say hi and write a novel

Tricia

Hi Tricia,
We also live in Colorado. Is the Dr. at Rocky Mountain Cancer Center, Dr. Allen Cohn?? I took my mom there for only 1 visit. I really liked him and he was instumental in getting my mom's onc to do a PET Scan every couple of months. My mom's onc wanted to wait 4-6 months. This was not exceptable to me because PET scans are our only tumor marker. My mom's cea has always been very low (1.6 to 3.9) and now is back at 1.6 , but because it has stayed so low, her onc says that it is not reliable. Anyhow, as I am sure you have read, my mom suffered with severe depression, and felt more comfortable staying closer to home for her treatments. She is now feeling better w/ the depression,and would maybe be more willing to go to Dr.Cohn??? so please let me know if Dr. Cohn is who you went to. I hate having to fight with her onc over everything-we are already fighting a brutal battle. We did start adding in alternative things such as the juicing and alkaline water to keep her pH up. Thanks for the great advise. I hope you see this. If I have not heard back from you in a couple days I will post a new message. Good wishes to you and I will keep you in my prayers.
Valerie

jana11

Valerie,
just to let you know another story. I was diagnosed at 32 years old with stage 3. I am now 36 and stage 4 and doing pretty good. Shame on that doc for giving your mom an expiration date - which are for dairy products, not people.

I am in texas and get all my care at MD Anderson. I strongly encourage you to meet other docs, get a second opinion.

I was on xeloda and avastin as a maintenance chemo after radiation of my lung met. It is just to keep the cancer from growing, but needs frequent scans.

My CEA was normal for 4 years - it only started rising recently. It needs to be continually checked, but scans are much more important. Each test is one piece in a large puzzle.

So glad your mom's depression is improving.

I will add your family to the prayer list I keep.

Definately start new topics with new questions and results... you'll get more responses and it will be easier to keep time.

Wish you all the best. Allow the cancer to teach your family to enjoy every single moment together.... smile, laugh, etc. Understand, each day may be better - and even if it isn't it still is another day... try to make it better.

Welcome aboard. jana