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Stage IV Desperate for Help

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Hi All,

I have posted on occasion and am grateful to those who have responded, reached out and inspired. I truly love reading the posts and the stories, all so encouraging.
My sister was dx 03/09, 39yrs old. mets to liver, ovaries and peritoneum. Emergency surgery to resect colon, remove ovaries. Started chemo for 4 months which seemed to shrink enough of the tumors to be a candidate for liver resection. During her chemo holiday, uptake and now in lymph node. Now back on chemo with Avastin and 5FU. Everyone and I mean everyone, is saying there is nothing they can do right now; wait out this round of chemo. No cyberknife, HAI, HIPEC, radiation, you name it, we contacted places all over the US, Europe and Asia.
Research all states "poor prognosis". My question to you all, how do you get someone to go beyond protocol? How do you know that perhaps, this is the one person it could work on? How do you give someone hope? I am scared and desperate!
Advice please.
Marie

jakesman
Posts: 33
Joined: Sep 2009

I believe that research is out of date, and stage 4 patients now have a 35-40% chance of survival, but I could be wrong.

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

researching, calling and nagging as much as you can. I know you mentioned that you contacted several places throughout the us, have you contacted:

a) Mayo Clinic
b) Sloan Kettering
c) John Hopkins
d) MD Anderson
e) Stanford
f) Dana Faber
g) Clinic Trails
h) American Cancer Society
i) National Cancer Institute
j) National Institute of Health
k) People Living with Cancer (Website)
l) Universities

It is hard to keep the faith, but remember, God does not give us more than what we can handle.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

I will contact those that we have not yet tried. Thank you for responding.

PhillieG's picture
PhillieG
Posts: 4869
Joined: May 2005

Sorry to hear about your sister. There are many cancer research centers like Nudgie mentioned that have excellent teams of knowledgeable innovative doctors who often go beyond the usual protocols. I am a little confused about your post. It sounds to me like your sister is in the middle of a cycle of chemo and they do not want to disrupt it. That seems normal to me. Also it sounded like the chemo was shrinking the tumors so that sounds positive. Am I correct or did I miss something in your post? Did they mention what would happen at the end of her chemo cycle?

As far as the research goes, my opinion is to throw it in the can. Do not put too much importance into it. It's old data. If what you've read is true then there are an awful lot of "dead" people on this site who are still posting, me being one of them.
-phil (via Ouija Board)
(5 1/2 years at stage IV and still getting treatment and still going strong)

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Hi Marie: I too am sorry to hear about your sister. From your post I understand that she will finish this round of chemo and then re-assess?

So maybe for right now that is the plan. Like Phil, I am a five year stage IV, started with colon and went on to liver mets twice. Marie I was given no hope but do you know what???

There is hope Marie....don't go with the stats....there is hope...there are so many of us here on this board...IV's and still marching!!

all the very best to you and your sister,

~mags~

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Marie, sorry about your sis. I have to agree with all that have answered your post. They sure have helped me. Best of luck to you and your sister. Keep reading and keep up hope.

Glad you are back Mags. Paula

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

The first round of chemo, Erbitux and 5FU, did shrink the tumors. Enough that they thought she was a candidate for liver resection. But after being off the chemo in order to have the surgery, it had spread to new areas, a lymph node and back to her colon. So, liver resection was cancelled and Avastin and 5FU restarted. After that, she was quite down and began contacting numerous other institutions to see if she could be a candidate for HAI, HIPEC, Cyberknife etc. They have all said no, but it may also be no, not right now, finish the round.

Phil-I am inspired by your posts and love reading them and your banter with Craig. I find everyone here to be such amazing people, they should put you all on some commercial to give everyone out there fighting this HOPE!

Marie

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Phil is my amigo :)

I respect him for his input and experiences and that he like me has been in the battle for as long as I have (5 1/2 years and counting) and he shares the same attitude that I have.

Phil is a good friend to me and I value his friendship probably more than even he knows. He's a comrade in arms....my ol'timer buddy.

Thanks, Marie - have a good day
-Craig

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

It seems that my husband is in the exact place that your sister is in. The only thing that keeps me positive are his labs. His tumor markers are going down and with every round of chemo the numbers get better and better. I realize that it's not a "solution" but as long as the cancer is kept at bay and I still have him with me...I can't complain. I, like you, will continue to search for options and research presents new options everyday. If I hear of anything new from the doctors I will post right away; but for now I just have to sit back and accept that the chemo is doing it's job and any interuption of this chemo cycle could back fire.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thanks for the post. I suppose it is hard to sit back and wait for this round of chemo to see what happens. As you have all said, it could mean wait and see and hope that after there is the option for another treatment. In trying to understand why MD Anderson, Sloan, Sugarbaker, etc. said no to HIPEC, Liver resection, HAI pump etc. is the extent of which the cancer has spread. Researching online states if you have liver mets and peritoneum mets, you are not a candidate for HIPEC, etc. and you have a poor prognosis. BUT as you have all stated, the systemic chemo can keep it at bay and give you hope! She is being treated at a major NCI center so I have faith and comfort in that. Thank you all for encouraging me. Reading online the stats is not a good thing. But in researching treatment options, you cannot help but read the statistics.

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I'm a stage 4 survivor who has enjoyed significant symptom-free periods for the past 5 years. This has been in spite of a "poor prognosis" and thanks to some very innovative and creative work by surgeons and oncologists, including both 5FU and Avastin.

I agree with what Phil and others have said. Working through a process of 5FU and Avastin is an active and progressive treatment. It is not as though nothing is being done. There will indeed be a time of reassessment when this treatment is finished. And try not to let yourself become discouraged or paralyzed by the fear and anxiety that comes with a "poor prognosis". My motto... "accept the diagnosis - defy the prognosis!"

It is natural for us to want everything possible to be done for our loved one and frustrating when we think that there is MORE that can and should be done and isn't being. Sometimes all we can do for the moment is to patiently accompany someone down a difficult path and hope that it leads to a place that offers more possibilities. I know this is the difficult part of being a support person. I am glad you have found this board and hope it can be a place for you to share your own fears so that you can continue to be a hopeful presence to your sister.

You can bring hope by sharing some of the stories of survivors from this site. You will see that HOPE is a common theme in many of our stories. You can also bring hope by supporting your sister in whatever treatment program she is in and helping her to decide on future treatment when the time is right.

Your sister is very lucky to have you with her on this journey. You are clearly committed to learning about the disease and supporting her through it. That in itself is a sign of hope!

I'm sorry this post is so long and I'm not sure it is the advice you are looking for.

I'll leave the last words on HOPE and SUPPORT to Vickie Girard... In her book “There’s No Place Like Hope” she looked up the meaning of support and had this to say…
“I once looked up “support” in the dictionary. It says: “To carry the weight; To maintain position to keep from falling, sinking, or slipping; To be able to bear – withstand; To keep from falling or yielding during stress; To furnish corroborating evidence; To aid the cause of by approving, favoring, advocating; To take action.” What a wonderful definition! Believe me, every single word applies...” Vickie Girard

Hoping the best for you and your sister... Rob; in Vancouver

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Rob in Vancouver, and thank you for the words of encouragement. Happy to hear you are doing well and I like your motto; defy the prognosis. Certainly words to live by.

Marie in California

walkingnutritionman
Posts: 15
Joined: Aug 2009

The success of a number of people on this web site is a great foundation for keeping hope alive. However, I am the type of person that also likes to increase the odds of success. There is a publication within the last year of a physician who had a brain tumor more than 14 years ago, went through brain surgery and chemotherapy, had a recurrence after 5 years, and now has been walking around with a tumor still in his brain that has not been growing for 9 years. The key to his approach is understanding which foods in the diet can inhibit cancer growth, and which foods in the diet can potentiate it. I read the book for the first time just a few months ago and was truly impressed by what he writes--both his personal experience as well as his good grasp of scientific research related to nutrition. This dietary approach can be used in conjunction with chemotherapy to make it more efficious. The author's name is David Servan-Schreiber, M.D., Ph.D, his book is called Anticancer: A New Way of Life. For more info on the book, just Google the word "Anticancer", and you will see the book listed for sale at amazon.com.

tootsie1's picture
tootsie1
Posts: 5055
Joined: Feb 2008

Hi, Marie.

I don't really have any information that has not already been offered. I just wanted to tell you that I will pray for you and your sister. Don't give up!

*hugs*
Gail

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thanks for the hugs and prayers!

Janet3
Posts: 61
Joined: Aug 2009

I completely agree that you should be diligent about trying to get other opiinions. Never take no for an answer. Keep searching for a doctor who is willing to help you explore any and every option that may possibly improve the prognosis. Quickly, let me say, my mom was diagnosed 30JUNE09 with Stage IV. First Dr said she had only 3 months to live and therefor no point to do anything. Seriously, this guy is a real dr! We obviously talked to other docs, went to M D Anderson. She started chemo, first round nearly took her out, it was horrible the side effects. Then my vegan brother came down to 'be in charge of her nutrition'. He has her on a cancer fighting/prevention regimen - juicing, strict protein intake requirements, and 'illegal' foods and cooking methods. She has had three more round of chemo with minimal side effects, gained 1 pound this week (after having lost 7). She looks better than she has in long time and says she feels better than she has since before her diagnosis. Hmmm. Nutrition may be they key and it certainly can't hurt. Best of luck to you. You will remain in my thoughts and prayers.
Janet

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

You will be hard pressed to find anyone to break protocol. That doesn't mean you can't get treatment. If she's in the middle of treatment she needs to finish and reevaluate her situation. My treatment plans have been changed many times based on my response to chemo. I don't know the extent of your sisters cancer but mets to the peritoneum can be tricky. Some are easy and some not so much. In the past, patients were graded according to a PCI, peritoneal cancer index. I don't know the grading criteria but I do know that it has to do with location and dissemination.
You didn't mention chemoembolization for her liver mets. I just had a bland embolization on some mets and am having some more next week. This is mildly invasive, usually an overnight stay, and can buy a bunch of time. Just today, a study was released in regards to receiving heated chemo. They use electromagnetic radiation to raise local temps to around 106F then administer the chemo. Results say you can use half the chemo with twice the effectiveness. There are only a couple of clinics in the US doing it but soon more will. It also helps folks who have become resistant to chemo. If noone wants to work on her, try a couple of clinical trials, there are some fantastic ones out there with more on the way. The goal should be to stay healthy as long as possible, new things are coming everyday.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thanks to all for the words of encouragement. We met with her GI Onc. and a radial interventional dr. that mentioned she would be a good candidate for SIR Spheres. We need insurance approval as we learned that some carriers term this "experimental". Unfortunately, she does not have one of the insurances that have approved this. There may be an appeal process or she may get approved quickly. One can never tell with these things.
I will look into the electromagnetic radiation. The mets to the liver AND peritoneum rules out alot of procedures. We are looking at clinical trials. We'll try anthing!

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