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Too many metastases means terminal. Too many metastases means terminal.

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Unread 05-26-2004, 10:45 AM
Too many metastases means terminal.

Linda - Your post touched me deeply. I really have no words of wisdom for you except to repeat what our others sisters have already said, but I just wanted you to know that you're in my thoughts and prayers. I was heartened though to see that your screen name is "tenacity" - that says a lot about you, so remain tenacious and demand the best for yourself! Carol
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Unread 05-26-2004, 11:09 AM
Too many metastases means terminal.

Oh, Linda. Geez! Not only do you have to deal with news of cancer spreading but you also have to deal with an organization that's going to deny treatment! Well, good morning, America!

Please pursue an appeal with Kaiser. Sometimes it does take getting the right person to look at "you" and not your "file".

There's another organization, too, that advertises (to use that term loosely) that they'll look at your case and will let you know whether they think they can be of any help to you. Kind of a "last resort". I think it's the Cancer Treatment Centers of America. They approach cancer treatment holistically and in most cases, do not just focus on "medicine" or "surgery". I think there are several CTCA's across the country.

Hopes and prayers are with you. Let us know how you're doing.
Unread 05-26-2004, 12:00 PM

Linda, Have you heard of / contacted the Patient Advocate Foundation? I'm sure they could help you with an appeal and other things with regards to insurance, etc.

Mary D.
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Unread 05-26-2004, 12:43 PM
Too many metastases means terminal.

I am so sorry you have to go through this. I have nothing good to say or think about Kaiser...they have been the bain of my family's existance for years!!! My sister has had to intercede to get help for my mom and step father. And, it is all about appealing decisions made by people who have no medical knowledge what so ever and much of their income is based on rejecting expensive treatments. You have a right to live to the fullest and nothing you have written says that you are necessarily terminal!!!!!!!!! Unfortuneately you are also not in the mood to be stressed to the max in this appeal to stay alive!! Is there anyone who can advocate for you? Husband, sister,friend? You desreve to have everything possible done for you until you say stop. And, I did a clinical trial and it went very far so good. I will say an extra prayer for you and others like you who have their lives in the hands of HMO's that put money before the patient.
Love, Sally
Unread 05-26-2004, 12:47 PM
Too many metastases means terminal.

Two things.

First, to add to what JoRaeMi said, a girl in my cancer group told me that The Tao of Wellness has had miraculous results with both accupuncture and medicinal teas. They also make dietary recommendations. I have not personally been there, but you may want to call them:

Second, Patsy Ramsey, mother of Jon Benet, was diagnosed with Stage IV ovarian cancer in 1993. She did not recur until 2002, and now goes through chemo on a pretty much near-constant basis. My question is, given her late stage, how did she go so long without recurring? What treatments did she undergo? Karenann might know, or someone else might. Her story gives me hope.

I also go to Kaiser. Are you in Nor Cal or So Cal? Let me know. I am not fully acquainted with their rules or protocols. My father was a doctor there for his entire career. I suppose I could ask him, but he was in a different field. I think age might have something to do with the profile as to whether or not you are a candidate for further surgery. Even though I am relatively young at 38, I still now feel compelled to ask my doctor how many more surgeries (if needed) Kaiser would be willing to put me through. (My hope is that I will not have to go through any in the future, but I guess I'm now interested to know the rules.)

I do know that my own gyn/onc team has seen some surprises when people pair alternative medicine with traditional. My doctor told me that he has one patient who takes a bunch of supplements and flies to France twice a year to participate in something or other. He told me that she by rights should be dead, since she had very aggressive cervical cancer, which is a different animal than what I had. But he also said that she is now doing wonderfully.

I wish doctors could let patients speak to one another. I want to call this person and speak to her. He told me that she's taking a number of the things that I'm taking. But I'm interested in the details.

While I am horrified for what you're going through right now, I am happy that you started this thread, and for the stories that other people have posted. I had no idea that if your CA125 fell well during chemo and then stayed low that you could still have stuff going on internally. I have a doctor's appt. next Tuesday, and I will ask about the possibility of an interim CT scan and other monitoring.

I wish there was something I could do. When traditional medicine fails, it may be time to look into other modes of healing. The book "A Cancer Battle Plan" has a lot of great info. The author had Stage IV breast cancer that had metastasized, and two chemos and a bone marrow transplant failed to kill the cancer. She ultimately got rid of it through a raw diet and a lot of supplements. I believe she lived 12 more years before passing.
Unread 05-26-2004, 12:52 PM
Too many metastases means terminal.

I do wish to say that I personally have received excellent medical care from Kaiser since I was a child. Broken bones, car accident (more broken bones and cheek surgery), random illnesses and cancer -- honestly, I have always felt well taken care of.

When my father became quite ill, though, my mom ended up thinking his doctor was a jerk, so she demanded that he be switched to another doctor. Even though my dad was a doctor there.

I think it's always possible, no matter what hospital or HMO, to find someone with a different approach.

BTW -- a doctor at UCLA mis-diagnosed a new friend of mine SEVEN times. She is only 30 years old and now has Stage IV stomach cancer. She will always wonder what her life might have been had this doctor understood that symptoms should not always be viewed in terms of age.

This is not to bash UCLA. It's just to point out that the medical field is imperfect. We have to help ourselves and be our own advocates to ensure we get the best care. My friend is quite meek. Whereas I would have insisted on a new doctor after the second visit with the first.
Unread 05-26-2004, 07:01 PM
Too many metastases means terminal.

Linda - I am so sorry you have to go through this. Do fight for a chance for further testing and another Dr. A co-worker of mine has grade IV colon cancer with mets to the liver and hipbone. Her Groups Health Dr basically told her she didn't have a prayer. At my suggestion they changed to another hospital, and she now has an oncologist who believes she does have more than just a fighting chance. She is doing well on chemo, and tests are looking better than expected and she adores her oncologist. He actually has more than just one plan - he has several - and his explanations are very thorough.
I have another former co-worker whose wife was diagnosed with cervical cancer - and the insurance refused to pay for certain tests. He wrote letters to the State Attorney General, his congressman and the Governor. The decision was reversed and the tests were done.
Don't ever give up.
Hugs to you.
Unread 05-29-2004, 12:46 AM
Too many metastases means terminal.

Thanks to all of my Hystersisters that responded! I greatly appreciate your insight, compassion, advice and kindness.

I've been dealing with Kaiser all week. I finally got results when I drove down to the Denver facility from Boulder. It seems to work better face to face.

I spoke with the surgical nurse of the doctor that originally did my surgery. I said to her that I might be imagining things but isn't it possible for a person to have more than one cancer at the same time? She said it was definitely possible. I think I read in Lance Armstrong's book "It's Not About The Bike" that he had 3 different cancers. They treated him with I think at least 5 chemos as part of his normal protocol. I'm only getting Carboplatin and Etoposide. I reasoned with the nurse that I must have another cancer. The obvious one got treated and the CA-125 numbers responded with a downward trend with the last well within the normal range below 35 at 23.8. I mentioned that the metastises I had at the start of treatment, on my belly wall, adrenals, etc. were gone. Now I have new metastises: each kidney has 1 and my vaginal cuff has a 3.2 by 4.2 cm mass. I also asked her if she thought that was a pretty impressive growth rate within 6 months. In fact it seems that this cancer loves the current chemo regimen! I'd like to this other cancer. The nurse saw my reasoning and agreed to talk to the surgeon. She called me back late today and said that I would be getting a CAT scan assisted biopsy via my vagina within 2 weeks. They would then determine what kind of cancer they're dealing with and adjust my chemo protocol accordingly. I think this might even be a cancer that responds well to some existing chemos.

In the meantime, my new oncologist is reviewing my file. I don't see how he's going to diagnose any new chemo until he gets the biopsy results but he did suggest Topotecan (spelling?) and Taxatol (not sure about this one. He thinks the Topotecan would be better tolerated. I talked to the charge nurse of the Oncology department. She works for my new ONC. She said that she talked to him about the possiblity of trying the chemo next week at my 6th chemo. I think I will go through the chemo only if they try an additional chemo. I don't want the side effects that's for sure but if we find by chance something that's effective then it would be worth it. After my 7th chemo we would do another CAT scan (unless we use the one from surgery instead). Then we can see if these metastises are responding. I know the inherent danger of using too many chemos at once is that if there's a recurrance there's more of a likelihood of the chemos not working. I think it's still worth it.

The are also forwarding my records over to Rocky Mountain Cancer Center. The have some Phase III trials ( the only kind that Kaiser will pay for) that may be worth trying. I also talked to the University of Colorado Medical Sciences Center and there are some Phase I, Phase II and Phase III trials. I talked to a GYN/ONC on the phone that day. I was really suprised to get through to a doctor right away! She is really interested in getting me into one of there trials and might be willing to work with Kaiser on the financial end of it.

I'll have a better idea of the options in a couple of weeks. I'll take any prayers and encouragement I can get. I'm NOT tossing in the towel. I am willing to keep fighting as positively as possible with them to get the medical treatment I need. At 48 I still have a lot of life left to live and I'm willing to fight for it!

I don't know what I'd do without all of your encouragement. I truely hope that some people learn from my experiences so that they never have to go through this stress. I hope to be here for a long time helping and being helped by my fellow Hystersisters! Although I prefer the helping part better.

Also wanted to add that ONCs that don't give you all the facts up front may not be doing you any favors. In the 6 months that my numbers were going down, organ functions looked excellent, etc. he probably should have done a 3 month CT scan. He should also have encouraged me to seek out clinical trials if the CT scan wasn't good. I would have felt good if we had a better plan of action right from the start. I struggled to get information from this man for months only to finally get the full scoop from the new ONC. It takes time to get into some clinicals. That old ONC didn't do me any favors in the time department. I think I would be asking the ONC for a plan and contingency plans up front. I think I would also ask about trials right from the start. I think that some ONCs can really break the spirit with suddenly bad news. I think the focuse should be on plans and strategies right from the start. Some people give up with lesser cancers because they just get so wiped out that they give up. The will and ability to survive are BIG factors in living through cancer and beyond. I never really appreciated that until this last go around with Kaiser. No one has the right to break down my spirit and if they try then I know it's time for another ONC, opinion, etc.

Unread 05-29-2004, 08:06 AM
Too many metastases means terminal.


Wow, you have had a busy week. Your fighting spirit and courage are beautiful! That makes much sense about having more than one type of cancer, but sad that you had to raise the question and not the Dr's. You are a real inspiration. Many friends and accompany you on this fight.
Unread 05-29-2004, 09:50 AM
Here's an "Attagirl" for you.

What a busy and worthwhile week! See what some noise can do? I'm very proud of you! Now may they find out what truly is happening inside you and get some chemo going that will kill every last cell in there. Persistence pays off..we do have to be our own advocates. You did a great job!

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