My mom was recently diagnosed with stage 4 cancer

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valeriec
valeriec Member Posts: 348 Member
edited March 2014 in Colorectal Cancer #1
Hi everyone, I am new to this so bare with me. In May 06, my mom(63 yrs old) was diagnosed with stage 3 colon cancer. She had surgery and started folfox. She completed 4 chemo treatments and was having very difficult time. No reaction to the chemo but ws very depressed. He oncologist stopped the treatments and ordered a PET Scan. Unfortunatly, it showed that the cancer had metastasized. Not to the liver and lungs, but to about 4-5 lymph nodes and her adrenal gland. Was told that with out further treatment she would only live 6 months??? She has started new treatsments that consist of Xeloda for 14 days with 7 days off, and she does avastin every other week through her port. We were told that her cancer is a very aggressive cancer and I am wondering if her chemo treatments are aggressive enough. We do another PET scan on Oct. 26th to see what is happening. I would appreciate any information, support, and prayers. It feels like we(my whole family) are still in a state of shock. Very confused and very scared. Her progression seemed so fast. She is doing better with the depression which I am very thankful for. Just need some to talk to. Someone who knows what we are going through. Thanks and have faith, Valerie C
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  • spongebob
    spongebob Member Posts: 2,565 Member
    #2
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    Hi, Valerie -

    Welcome to the SemiColons - as many will tell you, our standard greeting is "Sorry we have to meet like this, but glad you're here."...

    Chemo can cause depression-like symptoms, and, of course, when one is diagnosed with such a life-altering disease, it's perfectly normal to be actually depressed as well. Many cancer patients are on anti-depressive meds as part of their protocol. One's attitude is SO important. Keeping a positive attitude, in my opinion, is about 80% of the cure. That notion (though not necessarily the percentage I give) is backed up by many clinical studies.

    This is a great place to come and vent, ask questions, scream, etc. We are a great collection of survivors, caregivers, and family/friends. There is a wealth of both experience and compassion here that I have never seen elsewhere.

    Keeping your mom and your family in my prayers.

    - SpongeBob
  • valeriec
    valeriec Member Posts: 348 Member
    #3
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    spongebob said:

    Hi, Valerie -

    Welcome to the SemiColons - as many will tell you, our standard greeting is "Sorry we have to meet like this, but glad you're here."...

    Chemo can cause depression-like symptoms, and, of course, when one is diagnosed with such a life-altering disease, it's perfectly normal to be actually depressed as well. Many cancer patients are on anti-depressive meds as part of their protocol. One's attitude is SO important. Keeping a positive attitude, in my opinion, is about 80% of the cure. That notion (though not necessarily the percentage I give) is backed up by many clinical studies.

    This is a great place to come and vent, ask questions, scream, etc. We are a great collection of survivors, caregivers, and family/friends. There is a wealth of both experience and compassion here that I have never seen elsewhere.

    Keeping your mom and your family in my prayers.

    - SpongeBob

    SpongeBob, thank you for the warm welcome. You are right, this is a great place to come. I have been looking around and already don't feel so alone. There is a wealth of info and compassion. Glad that I jound this place. My mom's depression is lifting. Her therapist put he on lexapro and cymbalta and that seems to have helped. I agree with you that one's attitude is very important. Usually my mom is a real fighter, this just really slammed her. Do you mind if I ask, are you a caregiver? Or are you fighting cancer. Please excuse me if that is too personal. I am new to this and trying to figure it out. Have Faith, ValerieC
  • kerry
    kerry Member Posts: 1,313 Member
    #4
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    valeriec said:

    SpongeBob, thank you for the warm welcome. You are right, this is a great place to come. I have been looking around and already don't feel so alone. There is a wealth of info and compassion. Glad that I jound this place. My mom's depression is lifting. Her therapist put he on lexapro and cymbalta and that seems to have helped. I agree with you that one's attitude is very important. Usually my mom is a real fighter, this just really slammed her. Do you mind if I ask, are you a caregiver? Or are you fighting cancer. Please excuse me if that is too personal. I am new to this and trying to figure it out. Have Faith, ValerieC

    Hi Valerie,

    I was dx stage 3 and progressed to stage 4 with met (1) to my liver. Since your Mom's depression may be getting under control, perhaps the doctors can proceed to some other chemo regimens. If not, seek a second or third opinion. Also, when you do seek a 2nd opinion look for a major cancer center. I don't know where you live, but I know on the east coast Sloan Kettering is great and down here where I am in Texas, MD Anderson in Houston is tops. I know there are several others, even the Mayo Clinics.

    Bob is correct that attitude plays a BIG part in in the battle, cure and healing of this disease. Lots of us cancer warriors have been touched by depression at one time or another during our fight and I'm glad your Mom's therapist is helping her.

    Your mom will be in my prayers and thoughts.

    Kerry
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #5
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    Valerie -

    Welcome (and sorry you are here.)

    Xeloda and Avastin are common treatments - Avastin is a hugely powerful / effective drug. Is your Mom off of oxaliplatin due to side effects? (oxaliplatin was part of her Folfox regimen)?

    A positive attitude is hugely important - I am Stage IV and it has been a life saver for me - NOT always easy to maintain however, but for the most part I manage and I feel so much better when I maintain a good attitude.

    Take care,
    Betsy
  • spongebob
    spongebob Member Posts: 2,565 Member
    #6
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    valeriec said:

    SpongeBob, thank you for the warm welcome. You are right, this is a great place to come. I have been looking around and already don't feel so alone. There is a wealth of info and compassion. Glad that I jound this place. My mom's depression is lifting. Her therapist put he on lexapro and cymbalta and that seems to have helped. I agree with you that one's attitude is very important. Usually my mom is a real fighter, this just really slammed her. Do you mind if I ask, are you a caregiver? Or are you fighting cancer. Please excuse me if that is too personal. I am new to this and trying to figure it out. Have Faith, ValerieC

    Hi, Valerie -

    I am a survivor. I was diagnosed in 2001, completed chemo in 2002. My cancer type is genetic and has a nasty habit of popping back in to say hello - but I have been NED (no evidence of disease) since 2002. No need to be concerned about asking a question that is "too probing" to most of us - considering the "probing" that most of us take on a routine basis, it's sort of hard to be shy about much of anything!

    Good to see that your mom's onc is taking the depressive symptoms for action and the meds seem to be working.

    We're all here to answer any Qs you may have, so ask/figure away!

    Cheers

    - SB
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
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    spongebob said:

    Hi, Valerie -

    I am a survivor. I was diagnosed in 2001, completed chemo in 2002. My cancer type is genetic and has a nasty habit of popping back in to say hello - but I have been NED (no evidence of disease) since 2002. No need to be concerned about asking a question that is "too probing" to most of us - considering the "probing" that most of us take on a routine basis, it's sort of hard to be shy about much of anything!

    Good to see that your mom's onc is taking the depressive symptoms for action and the meds seem to be working.

    We're all here to answer any Qs you may have, so ask/figure away!

    Cheers

    - SB

    Probing, scoping, scanning, sampling....sigh....

    Hugs from your devoted daughter!
  • KathiM
    KathiM Member Posts: 8,028 Member
    #8
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    Valerie,
    Stage III here....dx'ed 11/04. chemo, rads, surgery. NED 5/05 (just about the time that, by statistics, I was supposed to pass....). Depression, both the survivor's and the caregiver's (don't forget YOUR emotional health), is very normal. This beast is a terrorist in the purest sense!!!!!

    I am glad that Mom is better. How about YOU???? Are YOU holding up????

    Please think of us as family here....we have the best 'tumor board' around (the one of been there/done that....lol).

    BIG HUGS to BOTH you and mom!!!!
    Kathi
  • valeriec
    valeriec Member Posts: 348 Member
    #9
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    spongebob said:

    Hi, Valerie -

    I am a survivor. I was diagnosed in 2001, completed chemo in 2002. My cancer type is genetic and has a nasty habit of popping back in to say hello - but I have been NED (no evidence of disease) since 2002. No need to be concerned about asking a question that is "too probing" to most of us - considering the "probing" that most of us take on a routine basis, it's sort of hard to be shy about much of anything!

    Good to see that your mom's onc is taking the depressive symptoms for action and the meds seem to be working.

    We're all here to answer any Qs you may have, so ask/figure away!

    Cheers

    - SB

    Hello Bob,
    you're a survivor, that does my heart good to hear that. Since my mom's diagnoses, we have not heard that. Her onc is a little on the doom and gloom side. My mom feels like her onc gives her no hope and that is very hard. I hate for my mom to lose hope because I feel like that is so important to have when you are fighting cancer. What kind of chemo did you do, and are you still doing chemo?
    Have Faith, Valerie
  • valeriec
    valeriec Member Posts: 348 Member
    #10
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    kerry said:

    Hi Valerie,

    I was dx stage 3 and progressed to stage 4 with met (1) to my liver. Since your Mom's depression may be getting under control, perhaps the doctors can proceed to some other chemo regimens. If not, seek a second or third opinion. Also, when you do seek a 2nd opinion look for a major cancer center. I don't know where you live, but I know on the east coast Sloan Kettering is great and down here where I am in Texas, MD Anderson in Houston is tops. I know there are several others, even the Mayo Clinics.

    Bob is correct that attitude plays a BIG part in in the battle, cure and healing of this disease. Lots of us cancer warriors have been touched by depression at one time or another during our fight and I'm glad your Mom's therapist is helping her.

    Your mom will be in my prayers and thoughts.

    Kerry

    Hi Kerry,
    Thanks for responding. When were you dx? And how long was it before you progressed? Are you doing chemo now? And what kind? Sorry about all the questions, I am just trying to figure this all out. I would love to take my mom for a second opinion. The problem is that my mom has been severely depressed and doesn't want to change onc even though she is not happy with her onc. The depression is starting to get better though so maybe we can do that soon. I just feel like Avastin and Xeloda are not enough. It seems like everyone else is getting treating with at least 2 chemos and 1 target. I don't know tho because I am not a doc! We live in Colorado, by Aspen. Do you know of any major cancer centers around our area? Thank you for the good thoughts and prayers. Have Faith, Valerie
  • valeriec
    valeriec Member Posts: 348 Member
    #11
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    Betsydoglover said:

    Valerie -

    Welcome (and sorry you are here.)

    Xeloda and Avastin are common treatments - Avastin is a hugely powerful / effective drug. Is your Mom off of oxaliplatin due to side effects? (oxaliplatin was part of her Folfox regimen)?

    A positive attitude is hugely important - I am Stage IV and it has been a life saver for me - NOT always easy to maintain however, but for the most part I manage and I feel so much better when I maintain a good attitude.

    Take care,
    Betsy

    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
  • valeriec
    valeriec Member Posts: 348 Member
    #12
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    KathiM said:

    Valerie,
    Stage III here....dx'ed 11/04. chemo, rads, surgery. NED 5/05 (just about the time that, by statistics, I was supposed to pass....). Depression, both the survivor's and the caregiver's (don't forget YOUR emotional health), is very normal. This beast is a terrorist in the purest sense!!!!!

    I am glad that Mom is better. How about YOU???? Are YOU holding up????

    Please think of us as family here....we have the best 'tumor board' around (the one of been there/done that....lol).

    BIG HUGS to BOTH you and mom!!!!
    Kathi

    Hi Kathi,
    I am not kidding when I say that I already do think of all of you like family. You do not know how happy I am that I posted a message today. I was not sure what to expect-been a little gun shy since this all started. I am very happy to hear that you are doing GREAT!!! It gives me hope for my mom and family. I have a great family, dad, mom, 2 sisters and 1 brother. I am one of the middle ones and have always been known as the "strong" one of my family. But this has been very hard. I always think that I am doing O.K., until I have a major anxiety attack. I have never had one in my life until all of this happened-makes me feel like I am not strong enough to handle this. I don't like that. I want to be strong for my mom, she needs me so much right now. During her Avastin treaments, I go down to their house-about 1 hour away-and stay for a week. So I am gone from my family here at home 2 wks a month. Thank GOD my husband can handle holding down the home front. He did have to hire house cleaner/nanny for our youngest son. It has worked out good. He really understands that I need to be there for my parents. Thank you for your concern and kind words. It really means so much. Have Faith, Valerie
  • valeriec
    valeriec Member Posts: 348 Member
    #13
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    spongebob said:

    Hi, Valerie -

    Welcome to the SemiColons - as many will tell you, our standard greeting is "Sorry we have to meet like this, but glad you're here."...

    Chemo can cause depression-like symptoms, and, of course, when one is diagnosed with such a life-altering disease, it's perfectly normal to be actually depressed as well. Many cancer patients are on anti-depressive meds as part of their protocol. One's attitude is SO important. Keeping a positive attitude, in my opinion, is about 80% of the cure. That notion (though not necessarily the percentage I give) is backed up by many clinical studies.

    This is a great place to come and vent, ask questions, scream, etc. We are a great collection of survivors, caregivers, and family/friends. There is a wealth of both experience and compassion here that I have never seen elsewhere.

    Keeping your mom and your family in my prayers.

    - SpongeBob

    O.K. Bob, I am going to ask you....Do I post a new message or do I just stay with the original one that I posted??? I just want to be able to tell you all about my mom's up-coming PET Scan results when we get them. Won't be for another week. What do you think? Thanks for the help. Have Faith, Valerie
  • kerry
    kerry Member Posts: 1,313 Member
    #14
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    Valerie,

    First of all, the minute you are dx's, you become a survivor!!!! Your mom is a survivor.

    Second, the easiest way to check up on all us "semi-colons" is to read our web pages..those that create their web pages put their complete history of this disease and treatments. It is a good resource...sometimes a photo or two to put a face to a name!!

    I was diagnosed in Dec. 02. I was clear for a little over a year when my disease came back to my lymph nodes. I fought that battle for about a year and then did radiation and chemo, then it came to my liver this past summer. It is small and my doctor is still very optimistic that we can get it cleared up. My first chemo was Folfiri (5FU, Leucorvorin, CPT11), second chemo was Oxaliplatin + Xeloda, then Xeloda alone for a year, then radiation, and now on Folfiri + Avastin. Whew!!

    Let us help you with this, you will never be alone at this site. Ask all the personal questions you want, that's why we are here.

    Let's work on getting your Mom well!

    Prayers and best wishes,

    Kerry
  • valeriec
    valeriec Member Posts: 348 Member
    #15
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    kerry said:

    Valerie,

    First of all, the minute you are dx's, you become a survivor!!!! Your mom is a survivor.

    Second, the easiest way to check up on all us "semi-colons" is to read our web pages..those that create their web pages put their complete history of this disease and treatments. It is a good resource...sometimes a photo or two to put a face to a name!!

    I was diagnosed in Dec. 02. I was clear for a little over a year when my disease came back to my lymph nodes. I fought that battle for about a year and then did radiation and chemo, then it came to my liver this past summer. It is small and my doctor is still very optimistic that we can get it cleared up. My first chemo was Folfiri (5FU, Leucorvorin, CPT11), second chemo was Oxaliplatin + Xeloda, then Xeloda alone for a year, then radiation, and now on Folfiri + Avastin. Whew!!

    Let us help you with this, you will never be alone at this site. Ask all the personal questions you want, that's why we are here.

    Let's work on getting your Mom well!

    Prayers and best wishes,

    Kerry

    WOW!!! We have not heard that. I can't wait to tell my mom. She is a survivor. That is great. Thank you so much for the support. How do I read personal web pages??? Tried to figure it out, but can't. I filled out a web page, but could not figure out how to put a picture on. I would love to put a picture of myself with my mom. I will keep trying to figure it out. How is the Folfiri treating you? I think, if my mom's next PET Scan is not good she will be doing Erbitux/Camptosar?? Thank you for letting me know that I will never be alone here. It really does help. I am so glad I decided to post my message today. Have Faith, Valerie
  • chynabear
    chynabear Member Posts: 481 Member
    #16
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    valeriec said:

    WOW!!! We have not heard that. I can't wait to tell my mom. She is a survivor. That is great. Thank you so much for the support. How do I read personal web pages??? Tried to figure it out, but can't. I filled out a web page, but could not figure out how to put a picture on. I would love to put a picture of myself with my mom. I will keep trying to figure it out. How is the Folfiri treating you? I think, if my mom's next PET Scan is not good she will be doing Erbitux/Camptosar?? Thank you for letting me know that I will never be alone here. It really does help. I am so glad I decided to post my message today. Have Faith, Valerie

    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
  • spongebob
    spongebob Member Posts: 2,565 Member
    #17
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    Hi agan, Valerie -

    Kerry is absolutely right; the moment she was diagnosed, your mom became a survivor.

    Chynabear is on the mark about Dr. Doom and Gloom - find another oncologist. Remember, the doc works for your mom, not the other way around. If her employee has a poor attitude, fire him/her and hire one that is more pleasant to work with.

    As far as postings go, I would recommend you start a new string. Typically once a posting rolls to the 2nd page (as others post it will push your post down the page) it doesn't get read much. We tend to be a rather chatty bunch (more postings than any group on Cancer Survivor's Net), so after a week, this post will probably be back in the ancient history archives around page 5 or 6.

    To view personal pages, look over to the left-hand side of your screen right now. See the blue "button" that says Personal Web Pages? Click on it. Then simply type in the name of the person whose page you wish to view. Remember that CSN operations are case sensitive.

    Don't forget to create a personal page of your own! CSN uses 28 personality factors to find you the perfect mate... no, wait... wrong website...

    Hope this is helpful.

    Cheers

    - SB
  • taraHK
    taraHK Member Posts: 1,952 Member
    #18
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    Hi Valerie,
    I want to add my words of welcome to you. It sounds like it might be useful to consider a second opinion or even a different oncologist. It seems like there might not be a good match in terms of attitude. I don't really have an answer as to whether she is on the best chemo regime at the moment -- but your oncologist should be able to discuss this with you and answer questions on this (with evidence, if you like that kind of thing. I do!). Perhaps you could ask specifically if there is a more agressive option and if so why he (she?) is not considering that....
    Best wishes to you.
    Tara (survivor of Stage III rectal cancer).
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #19
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    taraHK said:

    Hi Valerie,
    I want to add my words of welcome to you. It sounds like it might be useful to consider a second opinion or even a different oncologist. It seems like there might not be a good match in terms of attitude. I don't really have an answer as to whether she is on the best chemo regime at the moment -- but your oncologist should be able to discuss this with you and answer questions on this (with evidence, if you like that kind of thing. I do!). Perhaps you could ask specifically if there is a more agressive option and if so why he (she?) is not considering that....
    Best wishes to you.
    Tara (survivor of Stage III rectal cancer).

    Hi Valerie and welcome to tha family. Don't pay too much attention to my lingo 'cos us ozzies talk funny gal. What you must do is believe in those that can help you here, especially those like Kerry, Kathi and Tara that are stage 3 or 4 and kicking the living butt outa this demon. There are others here that are 3 or 4 and are NED!!(NO EVIDENCE DISEASE!) It can be done....it can be a long battle....believe!Stay in touch with your own health 'cos you are no good to your mum if you fall ill thru neglecting your own body and emotions. It won't be easy...but hey..that's why we are here.
    Oh.....you can listen to the words of wisdom from Sponger too(thought I better tell you he's a cool dude)....he!he!Yes...we have a little humorous side too. I lost my mum to brain cancer 7 years ago Valerie and know full well your emotional state...hang in there!
    Cheers, Ross and Jen
    fyi....I am stage 2 survivor-2 years,8 months NED. Chemo was hell but I had my "angel" Jen looking after me.
  • betina61
    betina61 Member Posts: 642 Member
    #20
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    Hi Valerie,I am very sorry to see what you are going through,but your Mom is very lucky to have a daughter like you, I was dx on july of this year I'm stage 3,with one positive lymph node I started the Folfox treatment and I am going for my treatment #6 in a week after that still 6 more to go.Valerie what I really don't like is the attitude of her Dr. being so pesimist,because I agree that to be positive is a must,to fight this battle,I have been lucky with my surgeon and onc. Dr. they allways were very optimistic, I think that you should look for a second opinion and find a dr. that give your mother hope,that is the key to fight this desease, when I discover this site I used to go through the personal web pages, and print all the sucsses stories of suvivors, and read them over and over again. Well Valerie you now know that you are not alone,and we will be praying for your mom and your family, lots of hugs, Betina
  • jerseysue
    jerseysue Member Posts: 624 Member
    #21
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    Welcome Valerie and hoping your Mom is feeling better as your read this. I was dx with stage 4 colon cancer April 05 did my folfox with avastin until Nov 05. Was NED (no evidence of disease) until recently my CEA rose and they found a couple of nodes in my stomach. I'm on new chemo just had round 1 need about 11 more to go. Ask all the questions you need to ask someone will answer you. Stay strong.

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