Really Need Support

Hi Everyone,

I have been a member on the site since my mom's stage IV diagnosis a little over a year ago. Every time I wanted to sit down and do an intro, I would get so overwhelmed with the facts, that I would put it off. Well now I am in desperate need of some support, suggestions and/or advice. Here we go........

My mom was originally diagnosed in December 02 with Stage II BC. She had a lumpectomy, followed by chemo and radiation. Everything was fine for the next 4 years. Throughout the first few months of 07 she started dealing with lymphodema, tiredness and weight loss. Her mammogram in June 07 came back ok. By September she was having fluid removed from her lungs and the tests confirmed that the cancer had returned. This time it had mestasized to her lymph nodes and bones and she was diagnosed with pleural effusion. The started her treatment with Taxol, Avastin and Zometa (once a week Taxol for 3 weeks and then 1 week off). She responded well to it, the tumors decreased in size and her physical condition improved significantly. This treatment plan was continued for about 9 months.

In June of this year, the doctor decided to give my mom a break from the chemo and put her on Femera and continue the zometa once/month. She had scans done the first of August, which showed small progression in the liver, but she also starting to develop some nodules on her breast which prompted the doctor to switch her to Xeloda and put her back on the Avastin every other week and continue with the Zometa 1x per month. After dealing with the insurance company for weeks.....she finally started taking the Xeloda last month.

Scans done on September 26th showed a marked increase in the number of  lesions on the liver and the size of pleural effusion had increased as well. At this time, my mom started experiencing severe pain in her back. (she describes it as a "gripping" pain, sort of like a contraction). She had been taking percoset off and on for minor discomfort, but since she was experiencing so much pain they started her on morphine.

On October 2nd she had the Avastin and Zometa. On her return vist 2 weeks later, she was told that her liver numbers were too elevated to do the treatment. The doctor told her to stop taking the Xeloda and return in one week to check the liver numbers and hopefully get her chemo.

Today we went and received the words I had been dreading since this whole thing started. We were basically told there was nothing else they could do. Her liver numbers were still climbing and it wasn't safe to continue treatment. We were referred to hospice.

I'm not ready to give up and neither is my mom. Hoping that someone can provide some insight or even a reality check for me. I just think that 1 week off of a drug is a short period of time and then I hear so much about liver mets being treated I need to understand why my mom's situation is different. If it helps, here are the liver stats: Total Bilirubin: 14.5, Liver function tests: Alkaline: 11.78, ALT 479 and AST 430.

We did decide to take advantage of the hospice care and will be meeting with someone tomorrow. In the meantime, I will continue to gather information to support my mom and hopefully make sure everything that can be done is done.

My prayers and support are with you all and your families.

Warmly,

Dawn and Joyce (my mom) in GA

Comments

  • bomber410
    bomber410 Member Posts: 564
    edited October 2008

    Dear Dawn and Joyce,  I don't have information and insight to offer you right now.  I do want to offer you both my prayers.  Your are facing challenging times.  Hopefully, someone will be on shortly to offer some ideas. 

    Debbie

  • Jaybird627
    Jaybird627 Member Posts: 2,144
    edited October 2008

    Have you posted this on the Mets board? They're the 'experts' and could give you the best advice. Or are you just looking at 'alternative' solutions? Good luck to you and your mom!

  • juliebb
    juliebb Member Posts: 140
    edited October 2008

    My mom also has mets and that's why I am a poster here too. I have such a great library of alternative treatment books. I will recommend 3 books for you. Bill Henderson has a new updated edition of his book,  Cancer Free.  He has a great website too. If you buy his book, read it first, he will talk to you and your mom on the phone and coach you through the bests alternative therapies.  I stink at posting links as you can see from my previous posts, so I won't even try. Anther book I highly recommend, is Ty Bollinger's, Cancer Step Outside the Box. He and Bill endorse each other. It's very easy reading and packed with so much information. The last book is, With the Help of Our Friends From France: Stabilizing and Living with Advanced Breast Cancer, by Carol Silverander. Get the 2007 edition, it's the latest.

     cancercompass? I think that's it. That's another discussion board for alternatives. Bill Henderson has one too.  Also, breastcancerchoices.org has good information. 

    My mom had pleural effusion from Taxotere.  She had a rare pulmonary toxicity from it. She had to get pluerodesis twice on the right lung and once on the left.  

    Pray if you are religious, it helps. 

     Sincerely,

    Julie 

  • juliebb
    juliebb Member Posts: 140
    edited October 2008

    Also, alkalizeforhealth.net is a great site.  

     AND.....

    Sherry Rogers, MD has great books. If you get really serious you'll learn about the coffee enemas. She explains them well. Yes, coffee up your butt....it's to detox.  That's really weird and gross I know, but it helps to heal the body faster. Especially since your mom's liver isn't well. Don't go by me, I am not a doctor.  I can share what books are good and where to go. Get expert advice before you attempt anything.  Sherry Rogers has an office near Buffalo NY I think. She does phone consultations too.  

  • mamafig
    mamafig Member Posts: 26
    edited October 2008

    Dear Dawn and Joyce,

    I'm so sorry about your cancer. I agree with jullebb. Go to www.beating-cancer-gently.com

    That's Bill Henderson's sight. Also www.cancertutor.com is a good site.

    Dr. Ralph Moss is also very good. Somone on here also posted about a cancer center in Tiajuana, Mexico which sounds impressive.

    When I was first diagnosed, my husband did lot's of research. Bill Henderson seemed to have the best treatments. We also like Ty Bolinger's book. But you need to do something fast! Henderson has some treatments to use when you don't have a lot of time. I know some of these treatments sound strange, but they won't hurt you, and may help.

    The first thing I did was stop all sugar. Then I began the Budwig diet. I only ate Vegan. And I really didn't want to do this. I only did it to please my husband. It all sounded kind of wacko to me.

    I had a lumpectomy to remove a 3cm. invasive tumor. Did the Bill Henderson protocal for 7 weeks. Then had a partial mast. All they found was residual non-invasive cancer cells. And no cancer in any of the nodes.

    I'm not advising you to do what I did. Just tying to help you understand that some of these things may sound strange, but they can help. I hope you find the best treatment for your situation. I'll keep you in my thoughts and prayers.

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