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

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  #1  
Unread 05-25-2004, 07:43 PM
Too many metastases means terminal.

Hello Ladies,

It's been a little while since I've posted anything but I've been dealing with a lot!

I had a CAT scan and chemo since the other post I made regarding metastases forming while on chemo.

Unfortunately I have a 3.4 by 4.2 cm mass growing from my vaginal cuff. They are going by CT scans so they probably can't tell if it's a fluid filled cyst or not but Kaiser is sure that this is probably another mass. They will not do any biopsies, MRIs, PET scans because this CT scan show quite a few mets that have developed since I was put in Carboplatin and Etoposide. I have a 2 by 3 cm mass on one of my kidneys now. They say that I have thickening of the rear hip bones which can indicate cancer of the bone now. I also have a small, long mass attached to one of the blood vessels. They say these make me a poor candidate for further surgery. They are concerned they'll weaken me although I had been feeling stronger and hiking and running more. I certainly didn't feel like I was getting any sicker. They said there were too many mets to operate on. I tried to get referred to Rocky Mt. Cancer Center but Kaiser is refusing to do so. They say there's no point. Now I'll have to pay out of pocket and I'm on Social Security Disability! They still want to put me through 2 more chemos to see how much time it might buy me to continue chemo. They are reluctant to try any other chemos citing concern over my low white blood cell counts that I've boosted using Neupogen for the 4th and 5th chemo.

I really don't know whether to go through with the chemos or not. It doesn't seem that they're doing any help and I'd rather try to get strong and have some outdoor experiences before I pass away (if ever!) from this. I think they can still do the final CT scan and get an idea of how fast it'll grow without chemo so I may have a little better idea of how long I have. I hate to do the chemos if they weaken my immune system even more. I also hate to do them if they really aren't doing me any good.

I really do have to say that this is a shock for me! My most recent CA-125 was 23.8. This never indicated mets forming. I really think they should've done an interim CT scan or something to see if anything was forming. I really wanted them to try to do surgery on the 3 bigger mets and try different chemo. I feel like I've been abandoned by my health care provider. They seem to have figured that my chances don't look good to them so why bother!

I was advised about hospice and the palliative (spelling?) care that Kaiser has started up. I was also told that I wouldn't really start to fall apart until the cancer got so invasive that it attacked major organs like my liver.

That means I could have a few months, a couple of years or even 15. It's really upsetting to me that they haven't been willing to try anything else. How could my CA-125 be so responsive. It came down from 384 to 107 to 28.2, etc.?

Is it normal for a health care provider to cut off tests, etc.?

They've said they would investigate clinicals and get back to me shortly. They said being off chemo would be detrimental to my getting accepted in a clinical trial. My Mom died last year from a clinical trial. She had colon cancer that had metastisize throughout her whole liver. She was too frail for the clinical trial. I have mixed feelings about them.

It seems like I'm walking in her footsteps on this one. Has anyone been through something like this before and had it all turn around and be OK? I really think this mass on my cuff is a cyst.

They've also told me that radiation wouldn't help and would be more painful that it's worth!

Linda
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  #2  
Unread 05-25-2004, 07:49 PM
Too many metastases means terminal.

Oh, Tenacity, I'm so sorry to read about your situation. But there is always hope (God's the only one who makes out the timetable) and I'm hoping that something can turn around for you.

I'm sure more people will be by to post and perhaps some of them will have had similar experience.

You know that you are being kept in prayer!

Blessings.
Marlene
  #3  
Unread 05-25-2004, 08:31 PM
Linda, I'm so sorry

First, is there an appeal process for Kaiser? There has to be and I would find out about it and try it. I would appeal so that you have that chance for the Cancer Center. In the meantime, can you get a second opinion at Kaiser? A gyn/onc if you haven't had one or another oncologist. You can, as last resort, contact your State Insurance Commissioner. Just because they seem to be quitting doesn't mean you have to!

Second, is one of the alternate chemos Gemzar? I have a friend in PA who's been going on without remission for years and she had spread to her lungs, neck, nodes, etc. They radiated what they could and now she's on Gemzar--with good results. It's been brutal on her but it's lowering the CA125.

Third, if your CA125 is 23.8 it may not be a good indicator for you. I have another friend in MI who had a recurrence going on that was delayed in diagnosis because her CA125 only went to 5 from 4. If your CA125 is NOT an indicator, then they'd need the CT or PET to see what's going on.

Fourth, I can understand your reluctance about a clinical trial. There's no guarantees with them, but it may get you out of Kaiser into another facility and that could be an entrance to more resources.

And again, first, I'd find out the apapeal process and get started on it.
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  #4  
Unread 05-25-2004, 08:41 PM
Too many metastases means terminal.

Oh Linda,

I am really sorry to read your post, but second what Marl said Our life is in the hands of God. Are they sure the masses are cancer? Why can't they try a different chemo? You are in my prayers every day. Ellen gave you very good advice. Do you have someone who can be an advocate for you in demanding treatment so you can just focus on healing?
  #5  
Unread 05-25-2004, 08:59 PM
Too many metastases means terminal.

Tenacity,

My heart goes out to you.

And I think that Margaret has given you strong direction in being as pro active as possible in dealing with your health care provider - some very definite courses that you should pursue, including an appeal. I am really quite taken aback at Kaiser's approach to your situation.

And metastases - well, that was were my ovca first made itself known, and that was almost 2 years ago for me when I was operated on, when the primary was still unknown. And looking back, I had had the primary - ovarian cancer - for at least a year and a half, before then, I now know. Because now I know what the symptoms are.

But, I know the feeling of dread about metastases.

When I lost just under a third of my stomach and 10-12 inches of intestine (the metastasis), I would tell myself that, even though I was no longer the way, physically, that I had been born, God still knew who I was. That helped me.

My heart and prayers are with you.
  #6  
Unread 05-25-2004, 09:04 PM
Too many metastases means terminal.

Linda,
I will be keeping you in my thoughts and prayers. A second opinion from a different cancer center. seems to be an option that I would try. I don't know how that works, but I don't see how they can just say that there is no use??? You are the only one that would be able to say when to stop trying. I hope that you can somehow, at least, get that second opinion. Just a thought , maybe worth a try? Sending lots of 's.


Rhonda
Radical hysterectomy, June 2002, cervical cancer, 1b
  #7  
Unread 05-25-2004, 09:38 PM
Too many metastases means terminal.

Dear Linda:

I agree with the suggestion of another opinion from another cancer centre if that's at all possible. Sometimes the doctors in one centre will stick to an opinion and that's that. But perhaps another group of specialists will see it differently. Please don't give up - you are in my thoughts and I wish you lots of strength.
  #8  
Unread 05-26-2004, 07:45 AM
Too many metastases means terminal.

Hi, Linda,

Nice to meet you! First off, I would DEFINITELY be appealing Kaiser's decision. How DARE they assume your life isn't worth fighting for? Keep in mind most of the time youa re dealing with someone who has nothing more than a HS education on the other end of the phone and is handing out cookie cutter answers.

Be persistent. Ask for supervisors. Ask for the nurses and physicians who are making the decisions regarding what care you can and can't have and keep pestering them - it may be tough to get them, but it can be done.


(I think I'm allowed to post this next bit here, if not - I apologize!)

Also, an acquaintance of mine had stage4 ovca and has been taking a supplement called Protocel. It's considered an alternative treatment. I don't know how it would interact with the meds you are on, but you should definitely ask your Dr. before starting anything like that. Apparently some folks have had miraculous results with it. It's available over the internet and it's inexpensive. She said it was similar to some medicinal tea a chinese medicine man had made up for her. I don't know if I would use it personally, as it isn't regulated by the FDA or anything, but if no one else will help you, maybe it can't hurt? I'm sorry to say I don't have much contact with this person anymore, but I last talked to her at about the 3 year mark or so and she had just had a follow up and was ca free.

Maybe some of the other sisters have heard of this and can give it thumbs up or down?

Keep the Faith. Be your own advocate!


Jo
  #9  
Unread 05-26-2004, 08:04 AM
Too many metastases means terminal.

You must get another opinion. It should be you alone who decides when to stop trying to fight, not your insurance company. Sounds like you are full of and ejoying life. You deserve EVERY chance to keep it that way.

Luciana
  #10  
Unread 05-26-2004, 09:16 AM
Too many metastases means terminal.

Hi Linda,

Your post made me very angry! Kaiser should not have the right to give up on you. They don't even know what the masses are! How dare they!

Ok got that off my chest. We all deal with cancer in our own way. What is right for one may not be right for the other. But, if you feel like fighting (which it sounds like you do) - fight! There has to be a way for your insurance to cover you. Margaret is right - appeal.

I am so sorry that you are going through this. It is really lousy. I will keep you in my heart and send you all positive thoughts.

Sharon
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