Help needed New here - My Mom

Momsweeboy
Momsweeboy Member Posts: 6
edited March 2014 in Colorectal Cancer #1
I have been reading posts for a couple of months now and I need to reach out for some help!!! A little of background my Mom (70 years old) has colon cancer that has spread to the liver and is extensive. She was diagnosed in January of this year she has a tumor about 4 inches in length and about 20 other spots on her liver. It doesn't look like her other organs are involved. Currently she has had two treatments of Chemo every other week, Oxaliplatin and then takes Xeloda for 7 days three pills twice daily. This past Monday the Dr told her he isn't going to give her another Chemo treatment (Oxaliplatin) since it is doing more harm than good. He thinks the tumor has gotten bigger. She is going to continue to take the Xeloda because she doesn't want to give up.

She is very weak right now and eats and drinks very little. She sleeps all the time and is fully awake only 4 or 5 hours a day. This is breaking my heart to see me Mother going through this!

I just got off the phone with another Dr that we had went to for a second opinion and he said that there really isn't anything else that can be done for her since she is so weak. I asked him how long he felt she had and based upon what I told him he felt a month or two.

I don't know what to do!!! Should I try and go to Dana Farber and see if they can give us any answers? I don't want to lose my Mom!!! :( Please if anyone can give me some advise it would be greatly appreciated. God Bless!

Comments

  • 4mykids
    4mykids Member Posts: 33
    Hi! I am new here, too. I can't answer your question about Dana Farber because I don't know who that is. The first thing that comes to mind, though, when reading your post is clinical trials. I don't know if you live in or near a city with a major medical center, but I live in Houston where there are much research and clinical trials done. I do not have personal experience with clinical trials, but perhaps that is something you could look into if 2 drs. are telling you nothing else can be done.

    If I were you, I certainly would not give up. Exhaust every possibility and pray for your mother and ask friends and family to pray as well. I have often heard stories of people who were given a certain time to live who ended up far exceeded that and with a good quality of life to boot! I wish you luck and will add you and your family to my thoughts and prayers!!
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    We are all here to help in anyway possible. Have they checked your mom's blood to determine if a transfusion could be the answer to her fatigue? My counts were down to a "6" when I was diagnosed, and needed a transfusion before I could start treatments. Although I was younger than your mom, I was 33, I still believe that should be questioned. Are the docs able to say how long she has had the tumors? What were her symptoms leading to the diagnosis? I'm so sorry to ask so many questions, but that may help others reply with more relevent information for you.

    Please keep us posted,

    Stacy
  • Momsweeboy
    Momsweeboy Member Posts: 6
    Hi Stacy and 4mykids,
    To answer your questions...Dana Farber is a Cancer Center in Boston. Sorry I should have said that in my first message. I Don't think she can do any clinical trial since she is to weak to do anymore Chemo. I guess my only hope in that regards is she trys to get stronger and then maybe she can give it another shot. From what I understand her blood counts are fine at this point. She has had that tested before each of the three appointments. The Dr's are not sure how long she has had the tumors but she orginally had colon cancer about three years ago and she had surgery to have it removed. They thought they got it all and so she was given a clean bill of health. The Dr. said that she is one of those rare ones that in her situation had spread to her liver. Her biggest problem before being this was discovered was a sore back. She had a coughing fit one day and all of a sudden she felt this lump. She saw a Dr and they thought it was a hernia which one of the lumps is but they felt another one and then it was determined after two liver biopsys that was cancer similiar to her colon cancer but more aggressive. Thank you both for responding!!
  • schoolgirl
    schoolgirl Member Posts: 29
    My heart and prayers goes out to you and your mother. I don't have any answers, except do not give up. Insist that the doctors give you referrals, go to this hospital that your mention (Dana Farber) if your doctors do not have other methods of treatment. Your mother deserves better treatment than what these doctors want for her. Keep coming back to this site, these people are wonderful, encouraging, and supportive. Prayers and best wishes. Yvonne
  • Kaye2003
    Kaye2003 Member Posts: 86
    I don't have any answers for you. But please know that where there is life and faith, don't ever give up. We will all be praying for both of you. God Bless.
  • Momsweeboy
    Momsweeboy Member Posts: 6
    Thank you all for your thoughts and prayers!
  • Hello!

    My name is Monika and I am caregiver to my husband Bert diagnosed with stage III colon cancer August 2003.

    My heart breaks for you and I am responding because not only am I dealing with Bert, I am also dealing with my mother, same age as yours, who has inoperable lung cancer diagnosed September 2002. I don't want to loose either one of them...I've already lost too many people in my life, including my beloveded dad who died when he was only 58.

    I felt the need to write to you because of my mother's situation. My mother fought and is continuing to fight a good fight, although there were times when she was having combo chemo (heavy, heavy guns for lung cancer) and radiation that she totally wanted to give up. The docs also wanted to stop, but she insisted. The result was that she did go into remission for a while, but it came back 14 months later. Now, her old onc didn't want to do anything more, simply wait till she suffered symptoms and then do pallative care. I think part of his decision was based on the fact that mom is 70 and he was trying to give her quality as well as quantity. I spoke at length with my mom about this as I respected that fact that the final decision would be hers, not mine, to make. I also told her that I personally don't accept "no more treatment" as an option and strongly suggested a second opinion at a major cancer center.

    Mom agreed because she, just like your mom, wants to continue the battle for as lung as she can. We went and a totally new plan of action was developed. New scans will be done shortly afterwhich they will be looked at. If the recurrent lung nodule has not changed, she will be closely monitored. If it has changed the slighted, she will have options to participate in a clinical trial or go back on chemo, which without the radiation combo, she tolerated quite well. Had my mom not been strong enough to face chemo, the new oncologist told her that there would have been options they could have done to try and build her up to the point where she would possibly be able to tolerate chemo.

    My point here being, I would suggest that you do go to a major cancer center. You certainly have nothing to loose and possible may even have something to gain.

    My thoughts and prayers are with you.

    Monika
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    Hi wee boy,

    So sorry to hear about your mom. I'm curious how come they have not yet removed the tumor.

    Have you looked into Alternative or Complementary Medicine to augment what the doctors are doing? Or in lieu of....

    If you are wanting to help her in some way then check it out:

    www.drday.com

    www.hacres.com

    www.cancerdecisions.com

    www.discountjuicers.com

    80% of colon cancers are diet related so maybe your job could be that she get the highest possible nutrition and I'm not talking Ensure. You do not want her to get the "wasting disease" so a good nutrional regimen would be so helpful. Cancer feeds on sugar so make sure she is not ingesting any sugar. Do you know about Macrobiotics? It's worth a search. Many folks have also had good results with juicing fresh organic veggies and detoxing their systems. There is just so much more out there than just chemos.

    peace, emily
  • Momsweeboy
    Momsweeboy Member Posts: 6
    2bhealed said:

    Hi wee boy,

    So sorry to hear about your mom. I'm curious how come they have not yet removed the tumor.

    Have you looked into Alternative or Complementary Medicine to augment what the doctors are doing? Or in lieu of....

    If you are wanting to help her in some way then check it out:

    www.drday.com

    www.hacres.com

    www.cancerdecisions.com

    www.discountjuicers.com

    80% of colon cancers are diet related so maybe your job could be that she get the highest possible nutrition and I'm not talking Ensure. You do not want her to get the "wasting disease" so a good nutrional regimen would be so helpful. Cancer feeds on sugar so make sure she is not ingesting any sugar. Do you know about Macrobiotics? It's worth a search. Many folks have also had good results with juicing fresh organic veggies and detoxing their systems. There is just so much more out there than just chemos.

    peace, emily

    Hi Emily,

    They can't remove my Mom's tumor. When it gets to the liver its very rare to be able to remove it especially at such an advanced stage that my Mom is at. I have not looked into alternative or Complementry medicine other than I did buy her Esiac(sp?)tea which in Canada is know to have cured people. Unfortunately she has not tried it because of being afraid it will make her sick. I will be talking to her this weekend to see I can convince her to try it. I aslo don't know anything about Macrobiotics but I will look into that and the other web sites you gave me along with your other suggestions. Thank you so much for responding...people on here are wonderful!!! God Bless

    Dave
  • 2bhealed
    2bhealed Member Posts: 2,064 Member

    Hi Emily,

    They can't remove my Mom's tumor. When it gets to the liver its very rare to be able to remove it especially at such an advanced stage that my Mom is at. I have not looked into alternative or Complementry medicine other than I did buy her Esiac(sp?)tea which in Canada is know to have cured people. Unfortunately she has not tried it because of being afraid it will make her sick. I will be talking to her this weekend to see I can convince her to try it. I aslo don't know anything about Macrobiotics but I will look into that and the other web sites you gave me along with your other suggestions. Thank you so much for responding...people on here are wonderful!!! God Bless

    Dave

    Hi Dave,

    I have used Essiac Tea too. It did not make me sick but it is not the best tasting stuff (don't tell her heehee). Please encourage her to be courageous to try these things to help heal her.

    A wonderful book:

    Beating Cancer with Nutrition by Dr. Patrick Quillin.

    He explains in easy to understand terms what nutrients are needed to battle which cancers. It's not hokey voodoo but basic nutrition.

    www.curezone.com is another good site to learn about other protocols with lots of anecdotal evidence from folks out there just like us trying to slay this cancer beast.

    Keep researching and never give up!

    peace, emily
  • Momsweeboy
    Momsweeboy Member Posts: 6
    2bhealed said:

    Hi Dave,

    I have used Essiac Tea too. It did not make me sick but it is not the best tasting stuff (don't tell her heehee). Please encourage her to be courageous to try these things to help heal her.

    A wonderful book:

    Beating Cancer with Nutrition by Dr. Patrick Quillin.

    He explains in easy to understand terms what nutrients are needed to battle which cancers. It's not hokey voodoo but basic nutrition.

    www.curezone.com is another good site to learn about other protocols with lots of anecdotal evidence from folks out there just like us trying to slay this cancer beast.

    Keep researching and never give up!

    peace, emily

    Hi Emily,

    Thank you so very much for the information. I'm not going to give up!! Somthing out there might be able to help her. Take care.

    Dave