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Failed Chemo-Sister's Update

sfmarie
sfmarie Member Posts: 602
edited March 2014 in Colorectal Cancer #1
I wanted to give you the latest update and also hope some of you familiar with clinical trials and the process of getting into them can respond.

Yesterday, after what has been a downward spiral after the open/close liver resection 2/10, my sister was told she "failed" all chemo options. I guess this means at this point in time, she has tried all of the chemo cocktails out there and they have not worked. She was on Avastin which appeared to be working until she went off it for her liver resection that never happened. She experienced severe back pain afterwards and had to have stents placed in her kidneys and liver. She also developed pancreatitis. Since February,she has been in the hospital two separate times! She is still painfully thin and is having a hard time gaining weight. The back pain is debilitating at times and she tries to take the medication only at night. The medication sometimes makes her loopy and hallucinate. She recently did four rounds of weekly Erbitux and the pump you take home to wear. It is so darn painful to hear her struggles and watch her try to resume some normalcy in her life. She is 40, diagnosed at 39, with three small children all under 8 years old. Her main issue it the mets to her liver and peritoneum.

Her onc. in Santa Barbara told her to look for clinical trials. He did not offer any advice or direction (this I find completely frustrating) and left it to her to figure that out. She has another appointment with Dr. Lenz at USC to see what he recommends for her. She is also contacting Cancer Treatment Centers of America (not sure I have the name right).

She does not want to go into the Perifisone trial as it has a 50% chance of a placebo.

Advice and prayers greatly appreciated.

Marie

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392
    Marie...
    This is such a heartbreaking story! Your sis is much too young of a woman to have this happen to her - I'm heartbroken to hear your pain, but I cannot begin to understand how you and your family are feeling. She's fought so hard and long and you mentioning her little children, it just breaks my heart!

    This is just not right - I'm usually good with words, but again, I'm finding time and time again, that words fail me in situations such as these. Nothing I can say will ease your pain and suffering.

    You've always been so supportive of me and I will certainly try and be supportive of you.

    I know there are other folks who are more versed in clinical trials than myself, so I'm going to back up out of their way.

    I just wanted to touch base with you this morning - still hoping for the best - and hope that you are doing OK - you've been there every step of the way.

    I'll go now - Craig
  • pluckey
    pluckey Member Posts: 484
    My heart aches for you all
    My heart aches for you all right now. Why weren't they able to do liver resection? It is just cruel all the other issues on top of fighting this damn cancer.

    My prayers lifted for your sister

    Peggy
  • linandtom
    linandtom Member Posts: 67
    My husbands case almost exactly like your sisters....
    WOuld like to send you a private message to discuss. We had treatment with Avastin, can't go back on as it will probably not work as well a second time. Had liver resection scheduled that also didn't happen after they opened my husband up due to tumors in the peritoneal area. He's in the hospital as I'm typing this waiting to have a stint put in his liver as the tumor is blocking a bile duct so he's very jaundice. He has tried 3 clinical trials and none have worked at all!! Very frustrating. They now was us to try this same placebo trial that is a Phase III but placebo.....come on FDA! this is peoples lives they are messing with! At this stage of cancer who can take a chance of getting the random selected placebo! We are not sure what to do. My husband just turned 60, we have only been married two years! I cannot imagine how hard this is for your sister with having small children. Please give her all the help you can....I just know that my husband and I could not be taking care of small children while going through this daily fight with cancer. I would love to talk more through PM and help you as much as I can with what info I have. Looking forward to hearing from you soon. Keep the faith and trust that something good will come along for your sister.
  • linandtom
    linandtom Member Posts: 67
    pluckey said:

    My heart aches for you all
    My heart aches for you all right now. Why weren't they able to do liver resection? It is just cruel all the other issues on top of fighting this damn cancer.

    My prayers lifted for your sister

    Peggy

    Why not liver resection?
    We have been told they cannot do liver resection when the person has several tumors on the liver and they also have tumors in the peritoneal - which is the lining of the abdominal cavity. Once the cancer is in this lining it seems your options are limited.
  • snommintj
    snommintj Member Posts: 601
    linandtom said:

    My husbands case almost exactly like your sisters....
    WOuld like to send you a private message to discuss. We had treatment with Avastin, can't go back on as it will probably not work as well a second time. Had liver resection scheduled that also didn't happen after they opened my husband up due to tumors in the peritoneal area. He's in the hospital as I'm typing this waiting to have a stint put in his liver as the tumor is blocking a bile duct so he's very jaundice. He has tried 3 clinical trials and none have worked at all!! Very frustrating. They now was us to try this same placebo trial that is a Phase III but placebo.....come on FDA! this is peoples lives they are messing with! At this stage of cancer who can take a chance of getting the random selected placebo! We are not sure what to do. My husband just turned 60, we have only been married two years! I cannot imagine how hard this is for your sister with having small children. Please give her all the help you can....I just know that my husband and I could not be taking care of small children while going through this daily fight with cancer. I would love to talk more through PM and help you as much as I can with what info I have. Looking forward to hearing from you soon. Keep the faith and trust that something good will come along for your sister.

    some other things
    Have you looked into the fostamatinib trial. There is also an olaparib trial. I think you should talk with an interventional radiologist and a radio surgeon. There are many new things they can do to prolong her life. Most of the things they do require little to no downtime or hospital stay. There are a few guys pioneering a new treatment program in the Czech republic, it's called plasmonic oncology. They are having decent results and work pretty cheap. Look into Novalis and cyber knife. She should have her cancer genetically tested. Maybe her cancer is more consistent with another form of cancer. Maybe she would respond better to a breast cancer regimen or other soft tissue regimen. When all else fails, there is a regimen I think might slow things down a bit.

    I currently take 1+gram of resveratrol a day. I take the pill and liquid form. I take between 4-5000 units of vitamin-d. I also drink about 7-10 lemons a day. When my chemo stops working I plan to add DCA, TM, and restart Avastin. I will also look to get on lovastatin. I'll try a high dose of DCA then work my way down if necessary. I'll take the TM until my copper levels drop considerably and then take just enough to keep them low. I think the TM will go nicely with Avastin, I'm surprised the Avastin people haven't tried a study with it. Lovastatin has been shown to have anti-cancer properties in several trials, but only in high doses. I might mix and match here and there but that will be my daily regimen.
  • Sonia32
    Sonia32 Member Posts: 1,071
    Marie
    I can't give you any advice but you and your sister are in my prayers. Hope they can work something out for her soon.
    Hugs
    Sonia
  • AnneCan
    AnneCan Member Posts: 3,673
    I am so sorry! I can't
    I am so sorry! I can't offer any advice for clinical trials, but I am thinking of you + your sister.
  • peterhw
    peterhw Member Posts: 69
    Clinical Trial
    Hi Marie,

    I am so sorry to hear that there is no more chemo option for your sister. I am doing clinical trial at Johns Hopkins. I know that your sister is on the west coast, it may not be possible to travel to the east coast for treatment. But you can call Hopkins to see if they can review her case. Hopkins is a research driven hospital. Some of the clinical trials that they sponsored may have multiple centers. The other place to call is National Cancer Institute. They have lots of trials going on. Looks for open label trial, so you know what you are taking. Don't be afraid of phase II trial, some of them are very effective.

    Peter
  • Trapbear
    Trapbear Member Posts: 108
    Marie,
    I am so sorry to hear

    Marie,
    I am so sorry to hear about your sister. I worked in cancer drug development for years and am familiar with a lot of the newer targeted drugs. There is a combo Phase Ib trial of two oral drugs targeted against MEK and PI3K.
    They are running this trial at Dana Farber (Boston), Sarah Cannon (Nashville), and Karmanos (Detroit)
    Good luck, please PM me if you would like more information, I also live in the Bay Area and my husband is in treatment for Stage IV colon cancer (lung mets, on folfiri plus avastin now).
    Hang in there,
    Bill
  • Shayenne
    Shayenne Member Posts: 2,342
    Trapbear said:

    Marie,
    I am so sorry to hear

    Marie,
    I am so sorry to hear about your sister. I worked in cancer drug development for years and am familiar with a lot of the newer targeted drugs. There is a combo Phase Ib trial of two oral drugs targeted against MEK and PI3K.
    They are running this trial at Dana Farber (Boston), Sarah Cannon (Nashville), and Karmanos (Detroit)
    Good luck, please PM me if you would like more information, I also live in the Bay Area and my husband is in treatment for Stage IV colon cancer (lung mets, on folfiri plus avastin now).
    Hang in there,
    Bill

    Awww Marie...
    I really hate hearing this about your sister. She shouldn't be taking pain meds only at night, when she has pain during the day as well, and have it making her feel loopy. I have appointments now to go to Pain and Pallitive crew, which is awesome. They serve the people who are in pain, and hate to see people suffer, in fact, I was advised from my onc to go see them, since he said they do a better job adjusting meds, then the doctor can, and the doctors are only limited to what they can really give you. Try them out, I believe most hospitals have them. My first appt in their clinic was yesterday (I have only dealt with them during my hospital stays), but they were very nice and sympathetic, and will tend to anything she needs. I will see them once every 2 months.

    I believe she should really try looking into those clinicals, if they are running out of chemos for her. I love Avastin, it actually has held my tumors at bay, and hopefully continues to do so.

    I hope she gets better, and things turn around for her, she is way to young to be going through this.

    Hugsss!
    ~Donna
  • crazylady
    crazylady Member Posts: 543
    clinical trials
    Hi Marie,
    I'm so sorry to hear that your sister has run out of chemo options. I recently ran out of chemo options and started a drug trial. It didn't quite work for me, but they might have something for your sister. My oncologist sent me to Premiere Oncolology in Santa Monica. They seem to have a lot of trials that no one else has and I was told that they would definately be able to help me. I have lung mets so it's different than what your sister has, but give it a try. My doctor's name is Lee Rosen.
    I hope that you are able to find something!
    Take care,
    Jamie
  • sfmarie
    sfmarie Member Posts: 602
    Sundanceh said:

    Marie...
    This is such a heartbreaking story! Your sis is much too young of a woman to have this happen to her - I'm heartbroken to hear your pain, but I cannot begin to understand how you and your family are feeling. She's fought so hard and long and you mentioning her little children, it just breaks my heart!

    This is just not right - I'm usually good with words, but again, I'm finding time and time again, that words fail me in situations such as these. Nothing I can say will ease your pain and suffering.

    You've always been so supportive of me and I will certainly try and be supportive of you.

    I know there are other folks who are more versed in clinical trials than myself, so I'm going to back up out of their way.

    I just wanted to touch base with you this morning - still hoping for the best - and hope that you are doing OK - you've been there every step of the way.

    I'll go now - Craig

    Craig
    Your kindness and understanding is heartwarming. I too agree that this just breaks my heart and every time I read another person's story or struggle here, I cry. It is a very tough disease!

    Thank you for touching base. I have been rooting for you and waiting for the post of your victory with NED!

    Take care,

    Marie
  • sfmarie
    sfmarie Member Posts: 602
    pluckey said:

    My heart aches for you all
    My heart aches for you all right now. Why weren't they able to do liver resection? It is just cruel all the other issues on top of fighting this damn cancer.

    My prayers lifted for your sister

    Peggy

    Pluckey/Lindandtom
    They actually did an open/close when she was supposed to have a liver resection. They found that the cancer had just spread too much and it was not lighting up on the PET. App. her liver is covered with the cancer, more like little icycles everywhere. Not just tumors that they could cut out.
  • sfmarie
    sfmarie Member Posts: 602
    snommintj said:

    some other things
    Have you looked into the fostamatinib trial. There is also an olaparib trial. I think you should talk with an interventional radiologist and a radio surgeon. There are many new things they can do to prolong her life. Most of the things they do require little to no downtime or hospital stay. There are a few guys pioneering a new treatment program in the Czech republic, it's called plasmonic oncology. They are having decent results and work pretty cheap. Look into Novalis and cyber knife. She should have her cancer genetically tested. Maybe her cancer is more consistent with another form of cancer. Maybe she would respond better to a breast cancer regimen or other soft tissue regimen. When all else fails, there is a regimen I think might slow things down a bit.

    I currently take 1+gram of resveratrol a day. I take the pill and liquid form. I take between 4-5000 units of vitamin-d. I also drink about 7-10 lemons a day. When my chemo stops working I plan to add DCA, TM, and restart Avastin. I will also look to get on lovastatin. I'll try a high dose of DCA then work my way down if necessary. I'll take the TM until my copper levels drop considerably and then take just enough to keep them low. I think the TM will go nicely with Avastin, I'm surprised the Avastin people haven't tried a study with it. Lovastatin has been shown to have anti-cancer properties in several trials, but only in high doses. I might mix and match here and there but that will be my daily regimen.

    Snommintj
    Thank you for all of that information. I do believe she has had genetic testing, though I do not think it is to the extent that you had due to your friend working at some super duper testing center. I do think her origin of cancer could be ovarian, since it met. to her ovaries but she had two separate places test the tissue and they said it was 100 colon origin.

    I will look into the Novalis. She was not a candidate for Cyberknife and turned down from insurance for SIR Spheres.

    I'm cheering for your journey. You have certainly fought a hard battle.
  • sfmarie
    sfmarie Member Posts: 602
    peterhw said:

    Clinical Trial
    Hi Marie,

    I am so sorry to hear that there is no more chemo option for your sister. I am doing clinical trial at Johns Hopkins. I know that your sister is on the west coast, it may not be possible to travel to the east coast for treatment. But you can call Hopkins to see if they can review her case. Hopkins is a research driven hospital. Some of the clinical trials that they sponsored may have multiple centers. The other place to call is National Cancer Institute. They have lots of trials going on. Looks for open label trial, so you know what you are taking. Don't be afraid of phase II trial, some of them are very effective.

    Peter

    Peter
    Thank you! I will let her know to look for an open label trial and at this point, we are willing to travel to get anything!

    I am happy to hear your Sorafenib is working.

    Marie
  • sfmarie
    sfmarie Member Posts: 602
    Shayenne said:

    Awww Marie...
    I really hate hearing this about your sister. She shouldn't be taking pain meds only at night, when she has pain during the day as well, and have it making her feel loopy. I have appointments now to go to Pain and Pallitive crew, which is awesome. They serve the people who are in pain, and hate to see people suffer, in fact, I was advised from my onc to go see them, since he said they do a better job adjusting meds, then the doctor can, and the doctors are only limited to what they can really give you. Try them out, I believe most hospitals have them. My first appt in their clinic was yesterday (I have only dealt with them during my hospital stays), but they were very nice and sympathetic, and will tend to anything she needs. I will see them once every 2 months.

    I believe she should really try looking into those clinicals, if they are running out of chemos for her. I love Avastin, it actually has held my tumors at bay, and hopefully continues to do so.

    I hope she gets better, and things turn around for her, she is way to young to be going through this.

    Hugsss!
    ~Donna

    Shayenne
    You are so sweet! And everytime I see your picture here, I think, man she should be a model! She does need to see some pain mgmt. team, I am not sure if her small hospital has one.

    Thank you for your hugs and prayers.
    Marie
  • luv3jay
    luv3jay Member Posts: 533
    Marie, I'm so sorry to hear
    Marie, I'm so sorry to hear of this news. I'm very shocked that her doctor has left her on her own to find clinical trials...that seems like a very careless doctor to me. Hopefully, her new doctor will be able to give her some good advice and treatment.

    -Sheri
  • tootsie1
    tootsie1 Member Posts: 5,036
    Praying
    Marie,

    I'm sorry that I can't offer information beyond what others have already given. I do want to tell you that I'm praying for your whole family.

    *hugs*
    Gail
  • pf78248
    pf78248 Member Posts: 209
    Wish I could help
    Marie,
    I am so sorry for what your sister is going through. It breaks my heart. I cannot offer any good advice but I do want you to know I have read most of your posts and no one is a better sister than you are. You have been such an advocate for her and serve as a great role model for all of us who are caregivers.

    You and your precious sister and family are in my prayers.

    Priscilla in San Antonio
    Husband David stage 4 but NED as of March 24, 2010
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Marie
    Marie,
    I am so very sorry to hear that your sister is not responding to any chemo. I will pray that she can get into a trial that will extend all of you hope. You are a wonderful sister, your love for Marie is so evident.
    Thinking of all of you.

    Aloha,
    Kathleen
  • zigswife
    zigswife Member Posts: 61
    Marie-
    I don't get to come on here as often as I would like but when I do, I always look for an update about your sister. I hope the upcoming appointment goes well and someone can help guide you toward some good clinical trials. You and your families are in my thoughts.
  • vlier
    vlier Member Posts: 3
    snommintj said:

    some other things
    Have you looked into the fostamatinib trial. There is also an olaparib trial. I think you should talk with an interventional radiologist and a radio surgeon. There are many new things they can do to prolong her life. Most of the things they do require little to no downtime or hospital stay. There are a few guys pioneering a new treatment program in the Czech republic, it's called plasmonic oncology. They are having decent results and work pretty cheap. Look into Novalis and cyber knife. She should have her cancer genetically tested. Maybe her cancer is more consistent with another form of cancer. Maybe she would respond better to a breast cancer regimen or other soft tissue regimen. When all else fails, there is a regimen I think might slow things down a bit.

    I currently take 1+gram of resveratrol a day. I take the pill and liquid form. I take between 4-5000 units of vitamin-d. I also drink about 7-10 lemons a day. When my chemo stops working I plan to add DCA, TM, and restart Avastin. I will also look to get on lovastatin. I'll try a high dose of DCA then work my way down if necessary. I'll take the TM until my copper levels drop considerably and then take just enough to keep them low. I think the TM will go nicely with Avastin, I'm surprised the Avastin people haven't tried a study with it. Lovastatin has been shown to have anti-cancer properties in several trials, but only in high doses. I might mix and match here and there but that will be my daily regimen.

    some other things
    Snommintj, how can we hook up privately? You seem to be way up to speed on all kinds of things, and I would dearly love to pick your brains if you wouldn't mind. My husband is 46, stage IV,liver and lung mets, on second round of chemo with Irinotican, 5-FU and Avastin. He is at the halfway point and it doesn't look promising. We are going to switch oncologists to a research hospital in Denver, hoping for better results. It was infuriating to me to find out on my own, for example, that the diarrhea could be tamed by eliminating gluten. So simple, and such a positive response. The research hospital has a comprehensive team, and we have sent records to Johns Hopkins and Emory for some possible studies. I also started him (again, on my own research) on 2000 units of vit D, after reading some studies. Only today have I learned about oncotyping as well. I am working up a good head of mad that the center and oncs we are working with are not going in these directions. I am new to this board so I don't know how to engage in private discussions. Thanks so much.
  • geotina
    geotina Member Posts: 2,111
    vlier said:

    some other things
    Snommintj, how can we hook up privately? You seem to be way up to speed on all kinds of things, and I would dearly love to pick your brains if you wouldn't mind. My husband is 46, stage IV,liver and lung mets, on second round of chemo with Irinotican, 5-FU and Avastin. He is at the halfway point and it doesn't look promising. We are going to switch oncologists to a research hospital in Denver, hoping for better results. It was infuriating to me to find out on my own, for example, that the diarrhea could be tamed by eliminating gluten. So simple, and such a positive response. The research hospital has a comprehensive team, and we have sent records to Johns Hopkins and Emory for some possible studies. I also started him (again, on my own research) on 2000 units of vit D, after reading some studies. Only today have I learned about oncotyping as well. I am working up a good head of mad that the center and oncs we are working with are not going in these directions. I am new to this board so I don't know how to engage in private discussions. Thanks so much.

    Vlier - sending private message (e-mail)
    Go to CSN Home, middle column will be communiate and connect. You will see the e-mail part. Just put in the sign in name - the CSN name, of the person you want to send an e-mail to and just type away and send.

    Tina
  • vlier
    vlier Member Posts: 3
    geotina said:

    Vlier - sending private message (e-mail)
    Go to CSN Home, middle column will be communiate and connect. You will see the e-mail part. Just put in the sign in name - the CSN name, of the person you want to send an e-mail to and just type away and send.

    Tina

    marie and messages
    Thank you Tina and Marie I apologize for hijacking the thread. Man, this battle can be quite wearisome and I would encourage you to make sure you do something to calm your own systems, so that you can support your sister all the more. My husband is stage IV liver and lungs, and it is just so hard to be in panic/sad/ upset mode all the time. My prayers for calmness and peace are with you. Victoria
  • vlier
    vlier Member Posts: 3
    geotina said:

    Vlier - sending private message (e-mail)
    Go to CSN Home, middle column will be communiate and connect. You will see the e-mail part. Just put in the sign in name - the CSN name, of the person you want to send an e-mail to and just type away and send.

    Tina

    marie and messages
    Thank you Tina and Marie I apologize for hijacking the thread. Man, this battle can be quite wearisome and I would encourage you to make sure you do something to calm your own systems, so that you can support your sister all the more. My husband is stage IV liver and lungs, and it is just so hard to be in panic/sad/ upset mode all the time. My prayers for calmness and peace are with you. Victoria
  • slamb58
    slamb58 Member Posts: 31
    I hate cancer...
    Marie,
    It breaks my heart that your sister is going through this at such a young age. Please kinow I am praying for you and your family. Below is a poem that I read when I rec'd bad news and I hope it will give you and your sister encouragement to continue to fight this dreaded hateful disease.

    Bend In The Road
    by Helen Steiner Rice

    Sometimes we come to life's crossroads
    And view what we think is the end.
    But God has a much wider vision
    And He knows that it's only a bend--
    The road will go on and get smoother
    And after we've stopped for a rest,
    The path that lies hidden beyond us
    Is often the path that is best.
    So rest and relax and grow stronger,
    Let go and let God share your load,
    And have faith in a brighter tomorrow--
    You've just come to a bend in the road
  • dorookie
    dorookie Member Posts: 1,731
    Praying
    I just wanted you to know that I am praying for your sister and you, and will continue to do so until she is better. Please know that you have so many people on your side and you are not alone, please let your sister know we are pulling and praying for her.

    God Bless her

    Beth
  • biglaur
    biglaur Member Posts: 72
    I was on a clinical trial
    at UCSD. When I was diagnosed with my "recurrence" I interviewed docs at USC (Lenz) a doc at UCLA (Glasby) and my doc at UCSD. USC was NOT the place for me, but Glasby at UCLA is one of the kindest, nicest most knowledgeable people around. If you can get into see him, you should try. Your best bet for a clinical trial is at a big teaching hospital...so you're on the right track. Keep at it, it sounds like your sister has the best kind of advocate in you...I wish you the best results and much good luck. If you need any phone numbers in SoCal just write Laurie [email protected]