what happens when the options run out?

[rosie]

Dear Friends

I have been battling with mets for a number of years with some success. At one time, I had liver, lung, brain and bone mets. Several times, I was told it was "time to get my affairs in order. " ( I hate that phrase! ) But each time, I was lucky to bounce back. The liver mets are gone, the extensive bone mets are gone, it appears the brain mets are gone and I am left with lung mets.

But I am running out of options for treatment. Right now I am on Doxil and I think I am once again responding but having trouble with colitis so he is going to have to again reduce the dose. But after that, there isn't much left.

I don't qualify for clinical trials because of either the brain mets. or too heavily treated or because my lung mets are not measurable.

And yet to look at me, you would never know I am sick. I don't need any treatment for the lung mets, I have no pain except from the chemo induced colitis, and I spent 8 hours today running around getting my oldest child ready for college.

My onc says I fall into the black hole of oncology, I have outlived the standard options, have had good responses so I am not that sick from the cancer but don't qualify for the trials.

I have tried to get some of the trial drugs on compassionate use. For the most part, it is fruitless. The drug companies have no motivation to help, don't want the expense and say they don't want any trouble from the FDA if they give the drug outside of trials.

So what do I do? I can't really go out of the country, I still have young kids at home. I have contacted my congressperson and they are trying to help but again, there is nothing requiring drug companies to do anything. I tried to contact the networks and they say this is not a story that people would be interested in.

I hate to be dramatic but it almost feels like sanctioned murder. ( sorry, I know that sounds strong ). There are drugs that might help me that I can't have access to because the drug companies refuse to help and yet I have very few options left.

If there is something I am missing here, I am all ears.

With people living longer and longer with stage IV disease, I am sure this will become more and more of an issue. I feel that there should be something in place by the FDA that says if a patient has run out of standard options and has no medical reason why an experimental drug can't be tried, then once they sign a release of liability, the drug company must provide the same access to drugs that patients get in clinical trials.

Anybody have any suggestions? I just can't see not doing anything because no one will treat me when I am physically in pretty good shape and don't want to go upstairs yet.....

[Kristen]

Rosie,
I don't know what to tell you. But I think you raise an important issue that should be addressed. I hate that saying, there is nothing else we can do? I just don't agree with that when someone like yourself still is willing to fight and no one will help them.
I know previously on this board, patients have contacted Cancer Treatment Centers of America. Have you tried calling them. See if they can help you with your situation? I know you have peaked my interest and I will do some surfing around, but it sounds like you have contacted the right people but I do know some people in the pharmaceutical community, I don't if they could help me or not. At least point us in a direction to go. I will give it a try and let you know if I am successful. I wish you the best Rosie. K

[al from canada]

Rosie,

When my Linda was on her death bed and I felt abandoned and that all other options had been exhausted, I started calling the major U.S. treatment centres. Living in Canada I didn't expect miracles BUT, miracles happened and I had at least 5 or 6 major Cancer centres involved in recommending traetment options. The Mayo Clinic, Cancer centers of Am., U or Phily, Cleveland Clinic, ....I can't remember the rest.

Long story short, these wonderful people with their combined resources saved Linda's life, were able to provide the most up-to-date and current chemo recommendations and ultimately influenced the choices of our local people here. Kudo's to Dr. Kathy Miller at U. of Philidephia.

My thoughts are that the "treatment paralysis" you are experiencing is resulting from empowering a limited number of individuals or less, how ever good or bad their individual resources may be, with your mortal destiny. Suggestion: get 4 or 5 or 6 other (concurrent) opinions. Devote 5 - 6- 12 hours on the phone with their research consultants, nurses, assistants, suppliers, who ever you think will be useful or whoever will listen.

The biggest obstacle in this search is overcoming your own fears and feelings of medical impotence. Show them how passionate you are about living and they will respond with the same. The medical profession's greatest ally is the uninformed and complacent patient.

Logistics.....

Looking back.......I think I started with the Am. Cancer society, explained our position ( liver mets and only 2 weeks to live) and asked for a list of the 6 top oncs who might be willing to look at our circumstance. That was a Wednesday afternoon. By Thursday noon I had 5 phone calls from clinics or doctors in the U.S. with concrete recommendations, treatment options, offers to treat....you get the idea!

That was 18 months ago. Support from the ladies on this board (and men) were also connected with the positive outcome.

I hope I wasn't too long-winded but I am very passonate about taking charge of your medical destiny AND using ALL available resources to achieve tht end.

Good luck,
Al and Linda

[*_Sandy H._*]

I have not been on my death bed but have fought stay off it!! Having just gone through the Miltex situation from Germany I do know you can not stop here. Al gave you some good advise. There is someone who can help its finding that resource and for some its more difficult. My oncologist told me after I went to my congress men that we as patients have more power then we realize or give ourselves credit for. I was impressed that he told me that. He is a great doctor and goes to bat for many of his patients in a battle if he thinks there is something that may save their life or give them quality of life. I don't know what to tell you at this point only that don't give up. Be firm with who ever you talk to and tell them its your life they do not understand because they are not in your shoes and you will not settle for anything but the best!!! If they can not help you you will find someone that will. They will know you mean business. I have had to do that a few times with my insurances, my oncologist(even though he is great I still have to be up front)the nurses whoever it is I am dealing with at the time. I will not back down for anything. Hope this gives you courage not to give up. Hugs, Sandy

[Kristen]

That is why I love this board, so many options are out there and just by posting you can get good solid leads to help you. Go get 'em. k

[Susan M (PA)]

For Al, how difficult was it to get return calls from the docs so promptly??
Just curious did you ever succeed in sales work, you seem like
a very determined individual who wouldn't take no, but often
it's difficult to stay calm under the pressure, when you're dealing
with sometimes apathetic people. Linda is very lucky to have you
as an advocate.

Best wishes Rosie. I would go with Al's suggestsions. Start with ACS,
University of PA is very good, also I've heard great things about CTA, and did contact them by email a few times.

Drs. John Glick and Kevin Fox are two of the most well known at Univ of PA
for breast oncology.

They're are a few women oncs at U of PA who also have been
recommended on the sites.

There is a women doc at Fox Chase, outside Philly. I had one consult
with her, her name is Lori Goldstein. She is noted on their site
as specializing in drug resistant breast cancer.

If you would like my doc's name, please email me, its a private group
near Philly, known for aggressiveness and affiliated with Jefferson.
My cancer center director is formerly of Sloan, a breast disease specialist, and surgeon. Oncs and surgeon will return calls. Maybe they would direct you.

I agree with others, don't give up, keep calling. Get as much info as you
can on the phone.

Susan M (PA) aqua920@mindspring.com

[Patty H]

Rosie, I felt the same way last week. I talked to my Dr. about being out of options. Because he had kind of said that to me a month before. But he just meant we were out of options of the chemos that have the lesser side effects like no hair loss, xeloda and navelbine etc. Anyway we talked about labatinib and he said he thought that would be a good one for me but of course I can't get it yet. He said they were doing a clinical trial here in Indiana for it but like you I don't qualify because of all the chemos I've taken. So we are starting abraxene tomorrow. Trying to contain while new things come out all the time. Like you, you would never know to see me that I am stage 4. I have been dealing with this breast cancer since 2000 and everytime I think I am running out of options they come up with something new. Like this year it is abraxane while I wait hoping next year I can get labatinib. My Dr. also goes back to ones I have already tried because if it's been over a year sometimes they will work for you again. My Dr. does tell me there is no cure for stage 4 and we will be treating this for life or till they do come up with a cure. Patty H

[al from canada]

To Susan,
They gave her 14 days to live, if the second opinions waited 1 week to get back to us then she would only have 7 days to live.....I think that struck a nerve with them.
Al

[Kaye]

Rosie, I understand your concern and fear. How about having different combo's of the druges you have already had? That is one possibility. Another is to use alternatives that have shown some promise. That might include: doxycycline, celebrex, lovastatin, accutane, thalidomide, Isotretinoin (accutate) -- either alone or with a diabetic drug. Then there is also Iscador or mistletoe treatments...

[StephN]

Rosie -
You do not say what part of the country you live in.
It seems like you are actually doing pretty well to control all the main organs but the lung.

There is also Dr. Mark Pegram that Esther saw and had an easy time contacting him. (He is also a researcher with Dr. Slamon.)

I would stay away from things like Mistletoe - my friend tried that and is no longer with us.

Have you talked to anyone about Avastin? This may be another option for you as it works differently - it is an antiangionetic drug that interrupts the blood supply to tumors. I would push for something that works a little differently.

[*_Cathy_*]

Dear Rosie- I am very curious to see what treatment Peter Jennings andTammy Faye Baker are on. You know they must be getting the best treatment possible. If anyone can find this out, please let us know. God Bless - Cathy

[rosie]

Hi Steph and all.
Actually, I did see Dr. Pegram. I asked him how much time I had. I dont' usually ask that question because obviously no one knows and I take the answers with a grain of salt. This was a couple of years ago when the lung mets were originally found.

He said " Well I know you must have read something so what did it say? " ( I have an unusual kind of lung met called lymphangitic, very aggressive and fast moving ). So I told him I read 8 months. Then he looked at me and said "S0?" So I said I had 2 young children and that wasn't enough time, to which he said " You have already far outlived what anyone would have predicted. You are at the end of the bell shaped curve and you should be saitisfied with that!" I thought my husband was going to deck him.....

He didn't have anything else to offer. I don't fit into the guidelines of the trials and he said avastin would never work on me because I have had so much treatment.

I have spoken with several oncs around the country, all breast oncologists and all highly regarded. Some were very very kind in spending time with me, others were bothered by my questions. But there were no magic pearls.

The real problem is that I no longer fit into any of the trials. ( I have already been on 4 clinical trials in my long career as a cancer patient ). I don't know what more to do.

Tammy Faye Baker is on an angiogenesis inhibitor but I dont' know what kind. I have no idea about Peter Jennings.

I was really thinking about Iscador ( Mistletoe ) but I am sorry to hear that your friend passed away. Was it due to the mistletoe or that it just didn't work?

Thank you all for your thoughtful responses. I think when I fail this last chemo I am on and truly have nothing left, that groveling to the drug companies will be in order. ( although in the 90's I desparately tried to get herceptin because I was at such high risk for recurrence. I groveled for 2 years without success and now I wonder if my life would have been totally different if they had given it to me then. ) I think by now though that I have learned how to grovel better and more forcefully....

[hmboyle]

Rosie,

You mentioned mistletoe...I know Suzanne Sommers
like so many who are taking mistletoe and the alternative route, have a long list of CAM therapies, too. It boggles the mind to read what Sommers claims she takes for supps daily, in her latest books.

I've also been looking into the alternatives, as I'm on Herceptin with lung
mets which have disappeared for the second time with Navelbine/Herceptin this time.. I've had 15+ years
of chronic immune illness before bc diagnosis in 2002. Misdiagnosed for several years and very ill, I read much about diseases and treatments.I don't have a medical background, but as a long term "professional" patient looking for a career change every day, just a few suggestions:


Have you read the
Gerson therapy by the late Dr. Gerson
or the latest book by his daughter Charlotte Gerson,
or the Anne Frahm story,
or Surviving Cancer by Margie Levine,(mesthelioma),
and Greg Anderson's book "50 essential things to do when
the doctor says it's cancer"?

These books and the survivors stories give me hope and inspiration and methods to take control of my health. All of these people survived 5-20 plus years after being told there was nothing more to do conventionally for their cancers, many were give only weeks to live, failing prior therapies.
There is a common thread in the stories, primarily nutrition and exercise, meditation, resulting in improved quality of life, using very specific and labor intensive methodologies.

Another book on my shelf, "Breast Cancer Beyond Convention
The world's foremost authorities on complementary and alternative medicine offer advice on healing" 2002
15 chapters from researchers, naturopaths, social workers, pharmacist,
and MD's including Susan Love, Keith Block.

Regards.

Susan M (PA)

[StephN]

Rosie wrote:
"I was really thinking about Iscador ( Mistletoe ) but I am sorry to hear that your friend passed away. Was it due to the mistletoe or that it just didn't work?"

My friend was at a fairly early stage in her fight against cancer and chose to do the Iscador instead of standard chemo. Her husband is wealthy and they tried all sorts of so-called cutting edge things. This was against the advice of mutual friends here in the cancer treatment community. Her disease was not as aggressive as mine and if she had not allowed herself to be "experimented" on, she would most likely be alive today.

Her cancer spread and it was then that she decided to do chemo - but too late as it went to her brain within 3 years after original diagnosis. Her last months were agonizing for her, and it was a terrible loss as she was young and otherwise successful in her life.

We need to take action and not wait too long to make decisions, especially when we have a good chance early stage.

OOPS - did not know you had in interview with Dr. Pegram. There must be others that you can bug. Why would he say Avastin would not work? Better to ask the drug maker to see what they have to say.

[Esther]

Ok, I'll weigh in here with my opinion...For ME personally, I would never forgoe chemo to try something alternative. But I will use herbs, etc to complement chemo.

I am presently taking Iscador twice a week. I'm on Herceptin and Aromasin as well, NED for 4 months. My onc says to continue with what I've been doing.

The NIH is doing clinical trials on the value of adding Iscador (mistletoe) to chemo regimens, and herceptin, and is reporting a 40% increased response rate than the reported responses to chemo or herceptin alone. Iscador may have a synergistic effect.

Just like not everyone responds to every chemo, not everyone responds to Iscador. you have to see a skin reaction at the injection site, a little spot of red, in order to know that your body has a response to it.

[rosie]

Esther
I am interested in finding out more about your iscador. Can you tell me more about where you get it and do you give it to yourself? I live in the Southern Calif area as well and am willing to see anyone.

Thanks.

[Esther]

Go to the Weleda website, www.weleda.com

They have dr's who can prescribe Iscador for you. It is only available by prescription. It needs to be ordered from Germany, and mine takes about 3 weeks to arrive every time it is ordered.

I think there is a dr. in Pasadena who can prescribe.

I have my sister, a family practice MD ordering it for me.

[StephN]

Esther -
Looks like there is more happening with Iscador than I was are of now.
Good to see that there are some controlled studies that will give some data other than the "shot in the dark" times when my friend went to Germany for her Mistletoe treatments. (She also was not HER2 postitive, at least at original dx.)

I was wondering if taking this will have any affect on eligibility for the vaccine trial.

How long do you plan to take iscador?? Is there any length of time that is recommended?? What is the cost?? Is it covered??

Maybe a new post to address these questions.

[rosie]

Esther, thanks for the info and the website.

You mentioned that some of the trials with chemo and iscador are showing a 40% boost in response to chemo? I would very much like to take a look at this info. Where can I find it?

Thanks again,
Rosie