just placed on hospice
 

hi gang... well, my Onc. says there is nothing more that he can do for me... He says if he gives me any more chemo the outcome will still be the same.
I have been taking tykerb, xeloda for over a year now. I didn't tolerate the herceptin.( heart issues) so now here I am with my entire chest covered with mets, red and some bleeding going on the chest. to top it off the onc. says the cancer has gone to my liver, spine and bones. to say I am disappointed would be a mild understatement. he has now signed off my care, is sending me to an hospice care Dr. now get this , he wants me to come see him every 8 weeks.. I am thinking what for?any suggestions gang.?had taxatore, gemzar previous, have had all the rads. they can give me.

I am going to make another post on what has been going on in my life. thanks in advance for any suggestions. charlotte

Re: just placed on hospice
 

Dear Charlotte,
I was troubled by your post on a variety of levels.

Most importantly, it is up to each one of us individually to decide when we are ready to put down the fighting gloves. Not your Dr, family or friends.

Sounds like you are still up for a fight so tell your Onc that you expect him to be in your corner and come up with another option.

As you probably know, so many on the site have had great success with TDM-1 . Have you considered that as an option?

Many of our brother/sisters have had mets in multiple locations and have successfully pushed back the beast.

I encourage you to follow your heart and not allow someone else to push you in the wrong direction.

Sending warm, supportive hugs.....Lori

Re: just placed on hospice
 

Charlotte
I am so sorry to read your news. I totally agree with Lori. I would also get a second opinion !!!!!!!
Call this number for T DM1. 1-888-662-6728. They can tell you about the nearest center offering expanded access to T DM1.
Take good care of yourself. I have my fingers crossed for you.

Re: just placed on hospice
 

I'm a bit confused. How closely monitored was the last year on Tykerb/Xeloda? it strikes me a need to try a different treatment might have been realized earlier.
Anyways...

Not sure where you are in terms of health systems. But aside from TDM-1, now might be a time for an up to date biopsy/pathology and chemosensitivity testing to see what would have the best chance of working. There have reportedly been folks at the end of their rope who bounced back after an informed chemo decision.
Otherwise, here are some chemo combos that might help.
Reusing previously "failed" drugs in lower/more frequent i.e. metronomic dose might help.
A new biopsy might also reveal opportunities for hormonal therapies.

Re: just placed on hospice
 

The other contributors made some good points. I would also see if Co Enzyme Q 10 would help the heart, so Herceptin can be added.
There are clinical trials for skin mets using Abraxane and 5 FU cream. I think the Washington Tumor Group is conducting one. There is a clinical trial using Tykerb and Pazoninib for skin mets. Try clinicaltrials.gov to search for it. You might have more choices than you realize.
Hugs !!!!!!!

Re: just placed on hospice
 

Charlotte,

Have you been in any clinical trials? What city and state are you in? Yes, by all means look into TDM-1 and other options as well. Your oncologist might be giving up on you, but we aren't! We'd like to have you around to post for many, many more years.

Re: just placed on hospice
 

Hi Gang: first thanks for the replys. to answer the TDM-1 I tried for it and its a no go. I sent them another email this week , still waiting for a response.
have tried the 5fu cream.. no sucess, never offered abraxane, Onc.said sure, I can run you through a whole bunch of tests... lets say a pet scan... they run a little over $5,0000. so your 20% would be $1,000.00 dollars and thats just one test, outcome will still be the same. He refuses to give me any more chemo.
I live in fla.
He kept on saying "there is nothing more , that I can do for you... the results will still be the same".
have not heard of pazoninio.
No, I have not given up... I am frankly beat down..
My mother died Feb. and my husband died March 17, 2010.( a total of 4 weeks for both of them). Obit is kent forest lawn.Luke jeffres, husband, and juanita hadley mother.I am not downplaying either deaths. I have cried atleast a gallen of tears.. I am learning real quick , when you cry it makes people uncomfortable... so I just keep putting one foot in front of the other and try to not talk about him/her and things like we were married for 28 years.I think I could have handeled this a little better if both of their deaths had not happened in 4 weeks.who knows?
They are going to take my port out soon and the cancer is all over it now.. I am afraid when they get in there , that will be it.
but I still know one thing, God is still in control, another one verse is God doesnt sleep. or close to that.
I had a garage sale Sat. trying to get up money for a headstone, People kept stealing my stuff right and left, I considered calling the police.one was tiffany glass, a lot of name brand stuff.
thanks again for the replys... and no ,I intend to fight this with all that I have in me.. I am "regrouping" now... I think I am just numb..
I can say, I feel better since off the tykerb and xeloda.
thanks , charlotte

Re: just placed on hospice
 

I am so sorry for all the deaths in your family and all your bad luck and health problems this year. It is alot for anyone to handle all at once.
You are entitled to a few days or a week to regroup.
Is there someone who can help you or who you trust and can talk to about all the things that have been going on this year?
I still think getting a second opinion would help. You might want to talk to the second opinion doctor about some of the suggestions we made. It is my belief that one doctor does not know everything. It is humanly impossible. You might find another doctor who is knowledgeable about things your doctor is not knowledgeable about. I have found it very helpful to talk to different doctors and other medical professionals who have been able to suggest things my own doctor either didn't know about or was not willing to suggest.
I still have my fingers crossed for you. Hugs.

Re: just placed on hospice
 

Hi Charlotte,

You certainly have had a lot to deal with recently. I am very sorry about your losses. It is difficult to tell from the information you have provided whether hospice is appropriate at this time. If you let us know the city and state you live in, we could help you find a second opinion doctor at a major cancer center who could give you another idea about your options. Do you have a friend who could be an advocate for you and help get this set up? I would do this before having your port removed, in case the second opinion doctor recommends further treatment. I wouldn't make a big decision like going on hospice without consulting with another doctor. If you were on Xeloda/Tykerb for a year, you must have been pretty stable on it. This suggests to me that your cancer isn't rapidly progressing, except maybe on your skin.

Take care,


JB

Re: just placed on hospice
 

Hi again... I forgot to mention that I have been to Shands in Gainsville.My husband was there for one reason and I was there for a second opinion of how we were going to suceed the protocal , that my Onc. is using is pretty much the same, except the addition of another chemo drug.I forget the name of it. not hurting quite as much today.thanks for the replys.

Re: just placed on hospice
 

I believe Dr. Mark Pegram who worked hand-in-hand with Dr. Slamon moved to Miami about two years ago. Where in Florida are you?

There used to be a famous Dr. Charles(?) Vogel, also in Florida who was famous for treating people with unusual combinations of agents for breast cancer ie, he did not always go by the book, but had good results. Perhaps he would take the time to go over what you have had, what other agents might be combined in innovative ways and try to help.

At ASCO there was a poster on imiquimod(Sp?), I think combined with another agent, for skin mets--will try to find it for you.

Could you call your local American Cancer Society? It is filled with lots of volunteers who will even drive you to another distant city to get a second opinion. After all that has happened to you, I would think they would find volunteers to provide all sorts of support for you

You are not alone. Keep reaching out.

By the way, at ASCO they showed a chart of how people did with first, second, third, fourth and fifth...line therapy after becoming stage IV. Most got little more time after fourth line....except her2s some of whom did well with fifth, sixth, seventh line. Very few doctors stayed for this talk as it was one of the last on the last half day. It is too bad your doctor was in Florida dashing your hopes --perhaps should have gone to ASCO and heard all the hopeful news on her2+ breast cancer

Re: just placed on hospice
 

this cream is already available for run of the mill (squamous cell, basal cell?) skin cancers so it is FDA approved just not for this purpose.


Evaluation of toll-like receptor (TLR)-7 agonist imiquimod applied topically to breast cancer chest wall recurrences or skin metastases.

Sub-category: Metastatic Breast Cancer

Category: Breast Cancer - Metastatic Breast Cancer

Meeting: 2010 ASCO Annual Meeting


Citation: J Clin Oncol 28:7s, 2010 (suppl; abstr TPS138)

Abstract No: TPS138


Attend this session at the ASCO Annual Meeting!
Session: Trials in Progress Poster Session

Type: Trials in Progress Poster Session

Time: Monday June 7, 8:00 AM to 12:00 PM

Location: S Hall A2

Personalize your Annual Meeting experience with a suggested or customized itinerary!

Author(s): S. Adams, Z. Dewan, T. Meng, J. D. Goldberg, A. Tiersten, N. Bhardwaj, S. Formenti, S. Demaria; New York University School of Medicine, New York, NY; Graceway Pharmaceuticals, Exton, PA


Abstract:

Background: Purpose: To assess the clinical and biological activity of imiquimod applied topically to breast cancer metastatic to skin. Breast cancer is the most frequent malignancy and the most common tumor, excluding melanoma to metastasize to the skin in women. Chestwall recurrence is debilitating for patients, substantially affecting quality of life (QOL). Current treatment modalities for nonresectable lesions are rarely curative, indicating the need for more effective and less toxic therapies. Imiquimod (IMQ), a synthetic TLR7 agonist has immunomodulatory activity with profound effects on the tumor environment, leading to clearance of primary skin malignancies. We have shown that IMQ recruits and activates dendritic cells (DC) and primes immune responses to coadministered tumor antigens in cancer patients. We have also demonstrated IMQ's antitumor efficacy in BALB/c mouse-derived TSA mammary adenocarcinoma, a poorly immunogenic tumor that ulcerates through the skin, closely mimicking the clinical scenario of patients with chestwall recurrence. Methods: Eligibility includes patients with biopsy-confirmed breast cancer, measurable skin metastases, ECOG PS 0-2 and adequate organ/marrow function. IMQ 5% cream is applied topically to skin metastases overnight for 5 days/week for 8 weeks followed by a 4-week rest period. Additional cycles are permitted. This phase II study uses a Simon optimal two-stage design: 10 patients in stage I (currently 3 enrolled), if response is observed, an additional 19 patients will enroll in stage II. Primary endpoint is 12 week antitumor response, assessed by clinical exam and computer-aided surface area calculation of skin metastases. Furthermore, effects of IMQ treatment on symptoms and health-related QOL will be determined. Tumor biopsies will be studied for immune signatures. Breast cancer skin metastases are infiltrated by inflammatory cells, including DC with markers of activation as well as tolerogenic function (e.g., IDO), and T cells with markers of effector (e.g., granzyme) as well as regulatory functions (e.g., FoxP3). The effect of IMQ treatment on the balance between these subsets will be determined.


A

Re: just placed on hospice
 

Lani/others.... it is Panama City, Fla.could the next angel who helps me , send it in a private email? I would appreciate it. I will explain later... thanks , for the help and suggestion.
This has to be the most "smartest" group of ladies here on the net... I tip my hat at all. thank ya'll so very , very much.. I truly mean it..
To change the subject.... what happened to the lady who had the title of never give up? I can't find her.
Thanks again...
I was so sick last nite, I had to call hospice.. vomiting and diarhhea. what a mess , I had to clean sheets, bedspread etc. took me all morning. to end this long email... I am still here. God bless all of you.

Re: just placed on hospice
 

I am so sorry you are under the weather.
I will send you a private e-mail, but I wanted to post the link to trials for skin mets here, so everyone can see them.
http://www.clinicaltrials.gov/ct2/re...ncer+skin+mets

Re: just placed on hospice
 

Charlotte,
Please know I am praying for you. You are such a fighter. I hope things get better.

Kris....

Re: just placed on hospice
 

I just found this one. It is for IBC skin mets.
http://www.clinicaltrials.gov/ct2/sh...zopanib&rank=2

Re: just placed on hospice
 

Charlotte, I hope that you are able to get the care you need. I am glad that so many have reached out with good ideas.

Lani, is there a way of reading that last speech from ASCO that you referred to above?

Re: just placed on hospice
 

I believe it will be available on video via the virtual meeting, which is expensive if you were not an attendee, but will be available free to all in six months.

Re: just placed on hospice
 

Well, I went back to the Onc. office to tell my favorite nurses goodbye.. I have really made some good friends there...
My Onc. Dr. came out of one room as I was telling my friend goodbye and I'll see her later, when outpops my Dr. He looked at me, didn't smile, frown. etc.. a completely blank look ... He has been my Dr. for close to 5 years. He turned around never said a word and went into the next patients room... sigh.
Will, keep ya'll updated.. I am turning over every rock I can find... I still think , I have a bit more spark in me... kinda like the bunny that turns around.. forget his name.... thanks again for all the support ya, ll have given me... Rick , I apologize when I said "I have the smartest Ladies here". I should have said, ladies and gentlemen.. chemo brain is something that hasn't missed me either... Charlotte

Re: just placed on hospice
 

I am happy you checked in to let us know how you are doing. I am thrilled that you still have alot of sparks and are not leaving any stone unturned. I would love to hear that you go back to your doctor's office 5 years from now and let him see you still alive and kicking !!!!!!!!!!!
Meanwhile keep looking for other health opportunities. They are out there, so keep turning over those stones to find something or someone to help you regain your health.