I am giving up
Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Talk
Forum Description: A place to chat
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=4574
Printed Date: Mar 26 2026 at 6:17pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com
Topic: I am giving up
Posted By: Autumn10182001
Subject: I am giving up
Date Posted: Sep 04 2009 at 6:40am
|
I saw another onc today.. same office, he looked at the remaining two nodules, and believes it is also the TN already back. they are talking about switching me to avastin, carboplatinum and taxotere.. if i choose to .. I think I would just rather throw in teh towel.. I don't want to live on chemo for the rest of my life... but I thank yyou for your support. Autumn ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Replies:
Posted By: dmwolf
Date Posted: Sep 04 2009 at 7:02am
|
Dear Autumn, You are currently in shock. Also, you don't have the results of your biopsy yet, so you don't really know what you are dealing with. It could be scar tissue, or something benign. It could also be breast cancer with different receptors (and different treatment options). There is no need to make an immediate decision - you can mull it over a while, cry with your family and friends, and create space in your heart for whatever's coming. Opting out of conventional treatment, if you decide to do that, is not the same as throwing in the towel. You can do alternative things, like focus on bolstering your health with good food, fun, yoga or dance, and such. If it does turn out to be cancer, you can treat it locally with radiation and/or surgery, and forgo systemic therapy. You could do local treatment and add something systemic, but not the whole kitchen sink. You could do something milder, like Xeloda or Xeloda and Avastin or add Zometa. There are lots of possibilities. How old are you? Do you have kids/grandkids? What do you enjoy? What makes life worthwhile for you? No matter what path you take, we are here for you. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: NancyJane
Date Posted: Sep 04 2009 at 7:13am
|
Autumn:
My heart is full of love for you, my dear. What ever choice you make, know that this forum is here for you. Denise shared some lovely words of wisdom with you. Please think about what she said.
Sending you lots of syber hugs....
Nancy Jane ------------- 41yr dx 7/25/08 Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
Posted By: mainsailset
Date Posted: Sep 04 2009 at 7:24am
|
I've had some nasty stuff happen this week as well and I keep trying to remind myself that things could be worse, my onc could enroll me in a trial down in Brazil testing tick spit to fight cancer. (Hope you didn't miss the post on that last week or you'll wonder what in the world I'm talking about) ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: SusanE1104
Date Posted: Sep 04 2009 at 9:08am
|
Autumn,
I hope you will take comfort in the other answers to you post. I have one other suggestion. If you aren't already taking an antidepressant, it might be a good idea. If you are like me, you are taking so many meds already, it's hard to keep them straight. But I have found my antidepressant very helpful. I take Pristiq. When I was first diagnosed stage IV in Jan. I wasn't sure I wanted any tx at all...why prolong things was my attitude. After a few weeks I changed my attitude completely. Now I feel that I will fight for everyday that I can have. I can't be sure that it was the Pristiq that made the difference, but it's worth a try. People sometimes ask me how I cope so well, and I tell them I think the human mind is an amazing thing. We seem to be able to adjust to just about any situation given enough time. Then I tell them the medication probably helps too.
I hope you will give it a little time before you make your decision. You will be in my thoughts.
Susan ------------- Susan 62 1987 Stage 1 1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin 8/09 NED 12/09 liver mets Taxol/Avastin 4/10 liver mets 11/22 Parp Car/gem parp failed 2/2011 Ixempra |
Posted By: Nancy
Date Posted: Sep 04 2009 at 9:28am
|
Dear Autumn,
My Lori would agree with you 100% as to living on chemo for the rest of her life, as she has said that"if" this beast comes back, she will never do chemo again, for if it didn't get it the first time, there is no proof that it will the second time.
Doing alternative treatments, such as Denise had suggested is not throwing in the towel, it is changing your lifestyle to help your body heal itself, which it can do, if given the chance.
Just know that no matter what you decide, that we will be here for you.
Love,
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: GRANNY
Date Posted: Sep 04 2009 at 12:49pm
| Please don't!!! Keep fighting!!! I wish we could all just meet for group hugs once a week. Other people and family try so hard to understand but just can not. I wish I could help you understand how important it is to keep fighting. Love Juia |
Posted By: unklezwifeonty
Date Posted: Sep 04 2009 at 1:00pm
|
Dear Autumn,
Please do not give up hope even if you decide to give up on conventional medication. Do not underestimate the power of positive thinking. Coupled with proper low fat diet, moderate (9 hour a week) exercise and yoga, you CAN beat this disease into remission. Love, ------------- Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307). |
Posted By: Autumn10182001
Date Posted: Sep 04 2009 at 1:04pm
|
Julia, why is it important, if they have already told me I can't be cured.? Why not get it over with, instead of being sick on chemo for the rest of my life ? They are thinkin Avastin, Taxotere and Carboplatinum... I think that combo will make me extremely ill, and I have to be able to work,
or we will lose the house.. if I die, there is plenty for my other half to pay off everything and be ok..
I know no one here knows me well... I have been with my partner for almost 10 years, we had our commitment ceremony Aug of 2000, where my Mom handed me to her and said it is your turn to take care of her. My mom was dieing from lung cancer. She died Dec 8th 2000. My Partner (Jenn) is the sweetest most loving woman I have ever known... her attitude is, your not dead yet, which I know many of us have... and that I should have. I have a lot of friends and support, throughout the USA, and I am blessed with those folks.
My partner has a 5 yr old granddaughter, (she is granddaughter to both of us), and she is the next most important thing in my life. And I have my dog, Autumn, a Golden Retriever who is and has been my best friend for the last 8 years. We travelled 37,000 miles 26 states together, and that has been the best time of my life. Knowing I will never be able to do that again.. is crushing..
I had a real hard time with the adriamyacin and cytoxin, i was doing good on the taxol and getting back to doingn things and changed my attitude to one of survival.. as I thought I could be cured.
I don't know how all of you do it... but I am not able to... I am beside myself, I just don't want to wake up again.. ever... I did write this a while back, right after I had started chemo in May.. things are much different now.. incurable changes everything..doesn't it
A Note to the Devil Called Cancer So you think you got me this time, with a stage III, grade III, diagnosis, Well think again - Devil, you don't have me. I will give you a little credit, you bent me way over for a while, My spirit laid on the ground, like the limbs of a downed tree. For weeks, I was lost, and wanted to give up, I spoke of nothing else, and cried at every thought. You slapped me around for weeks on end You continued, on my mind and spirit, your assault. With my spirit broken, and so sick from treatment I couldn't think of continuing, I was broken; so I thought, But you forgot, who I am, and who my friends and family are, They stood me up, and until I could, it was for me they fought. Oh you almost had me, Devil, but God stepped in too. And you are not, and never will be, a match for God and I. You won a few rounds, you took my breast, and even my hair Ahh, yes my spirit you rattled, but I will not give up and die. Devil, you can have my breasts, but that is all you get, You see, I am a Survivor, I have been, for my whole life, I have survived the odds each time life handed me a fight And this time I have more help, a supportive and loving wife. You might win a few more days, here and there As treatment takes its toll on my body, for a while But I will emerge on the other side, stronger, And ready to face life with a laugh and a smile. You had me for a while, I forgot just who and what I am, I am a Survivor on this journey --- life is for living, You forgot that, and you forgot all of those on my side You forgot their spirit, their love, and their nature for giving. So we will battle for a while, but you will not win ! I have too much to still do and much more to give, God will carry me, when I can not walk on my own, I am a Survivor and I want to live ! Author: Jill M. Indelicato Highland, NY June 10, 2009 Two time Breast Cancer Survivor 1999 and 2009 ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Sunris
Date Posted: Sep 04 2009 at 1:22pm
|
Autumn,
There you have it.... You have named many many reasons to put your pink boxing gloves on and fight like a girl! Lift your pretty little head up, think about all the great memories that you & Jenn still have to make for your granddaughter. ( "I remember going to grandmas house and it always smelled so good"....."my grandma makes the best ____? " ...etc..) We can all get down at times, but for me it was not really ever an option as I have 4 beautiful grandchildren that I choose to wear them pink boxing gloves for. The poem you posted says so much...and from a 2 x survivor!!! That in itself is an abundance of inspiration & hope. We are all here for you....please don't hesitate to send a PM if you ever would like to talk one on one. I will be happy to give you my # or would be happy to call you. ( Gotta love unlimited minute plans!!) Next time I see you, I want to see that pretty little chin lifted up :) It's so becoming of you !! Much love & big huggzzzz Dawn -------------  Dawn Age 43 at DX DX 3-09 IDC 3.9cm TN-Stage2-Grade3 Taxolx9, FACx2, halted TX, Lump.8-25-09..rads x 8wks. |
Posted By: LRM216
Date Posted: Sep 04 2009 at 2:29pm
|
You wrote a magnificent poem - now keep reading it over and over again. Please try an antidepressant and get that fight back! You can do this! While I respect what you are feeling and saying, probably the exact thing I would say and feel, we are here to hold you up. It's another fu$king "bump" in the road - a boulder perhaps, but it is surmountable. Don't give up!!!!
Hugs,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: SusanE1104
Date Posted: Sep 04 2009 at 2:38pm
|
Autumn, When I was feeling like you are, my daughter asked me if I wouldn't like to live to see my grandson graduate high school. You have your little granddaughter. Think of another birthday or starting first grade or more hugs and kisses. Tomorrow my husband and I are driving two hours to see our grandson run in a cross country race. The sky will be blue, the air will be soft and warm, and I will be alive to enjoy it. I won't be thinking about what lies in the future. I have truly learned to live for the day. You can get there too.
Susan ------------- Susan 62 1987 Stage 1 1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin 8/09 NED 12/09 liver mets Taxol/Avastin 4/10 liver mets 11/22 Parp Car/gem parp failed 2/2011 Ixempra |
Posted By: Nancy
Date Posted: Sep 04 2009 at 3:44pm
|
Dear Autumn,
Actually, anyone dx with cancer can never be cured, as there is no cure, or if there is, they sure as hell aren't telling anyone. Our grandson was dx with leukemia at age 3 in 1991, and has been in remission ever since. Cured? NO! The doctors say that cancer can come back, but it will probably be another type of cancer. I am just grateful that he remembers very little of the 3 years that he had treatments.
As I told you, Lori will never do chemo again, as she feels just as you do about living that way. Her faith is very strong and it is quite evident by your poem that you have a strong faith also. You have to do what is right for you at this time, and I will not tell you to do more chemo, when you have been down that road twice already.
You are so fortunate to have Jenn as a loving caring and devoted partner, and I just know that she will be there for you whatever your decision may be. Let it be your decision Jill.
Love,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Julia
Date Posted: Sep 04 2009 at 5:05pm
|
I'm so sorry you're in this situation. I hope the oncs prove to be wrong. If they're right, I wish you all the best in finding the right way to manage your condition, whether that includes traditional meds, alternative, lifestyle changes, or nothing at all.
Hugs, Julia ------------- Diag. 3/09 TNBC, IBC, 55mm. 4 rounds AC, 4 weekly Paclitaxol. Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads. 2 more rounds of A/C, 6 months low-dose CMF. |
Posted By: cg---
Date Posted: Sep 04 2009 at 5:58pm
|
Dear Autumn,
Your best friend Autumn would never, ever give up on you....do not give up on yourself.
Draw from our replenished resources of hope and strength. Please know you are a member of this family of sisters and brothers who feel and understand what this disease does to the human spirit.
There is no certain prescribed way 'we get through this'...some days it is putting one foot in front of the other, some days we falter and someone catches us, some days we reach out and someone is there to hold our hand...but I know one constant is your life is Autumn....uncondition love, strength, comfort and devotion.
In my darkest moments, when I was too scared to move, when husband, children, family and friends in my world were not even aware of the despair inside me - my Paco knew and never left me. Autumn will help your through this.
Love,
Connie
|
Posted By: MsBliss
Date Posted: Sep 05 2009 at 12:01am
|
Autumn, I don't blame you for feeling this way. There is a beautiful songbird outside my window as I type this. We don't have a great variety of songbirds in the area where I live, so every single one is a jewel to me. She looks like she is stressed--it has been a hard summer. No good sources of food, wildfires everywhere and smoke, triple digit heat and smog, predators of all sorts, well fed house cats, ravens, raptors, raccoons, avian flu. All she wants is to survive and thrive with her family. She is you. I am going to go outside and refresh the bird bath, put special mix outside in a safe place to nourish her and wish her godspeed from my heart. Recipe for special mix: This special recipe is a menu list of evidence based anti cancer protocols enumerated at this link: http://nosurrenderbreastcancer.websitetoolbox.com/post?id=3639606&trail=20#2 READ IT. In it, you will see a glimpse of hope. It will empower you to take your health in your own hands, to feel that part of the remedy is not necessarily only in a syringe, but maybe in a multi faceted approach. Also, read Constantine's analysis of the state of the art in chemo options; there is much for you to ponder. Like Denise said, there are milder chemo options to consider, if you even need them; and there is an ongoing PARP trial that may be a good fit for you. This is a stupid battle. All you want to do is banish this nasty cell and live your life. This is what we all want and we want it for each other. It is not contingent on your attitude or your positivity. If you feel completely negative about all this insanity than you are more reasonable than you realize. Be pissed. Be negative. Give up, even. Regroup, then come back swinging. |
Posted By: BrendaF
Date Posted: Sep 05 2009 at 5:21am
|
Sorry . I'm out. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: LRM216
Date Posted: Sep 05 2009 at 5:39am
|
I did not feel from reading Autumn's posts that she has "decided" to just give up. Re-read them and perhaps you will see for yourself. I can only speak for myself; however, I feel the other posters also felt after reading her post that is that she is at a crossroads and could also be very depressed, which would be a very normal reaction to where she is right now. Nobody has "criticized" her in any post and I would like you to show me just where that has happened. We are extending our hands to someone in need. I do not feel that, with the beautiful poem she has written and felt important enough to reprint in her post, that she has made a definite choice in what her desires are. I see someone that has struggled very hard to fight this beast, only to have heard more bad news - the plight of any one of us. To come down on people that are extending support to someone that is very obviously hurting is totally unnecessary. It most certainly is Autumn's perogative to decide which direction she wishes to take, and we would all certainly respect her choice; however, I don't believe anyone of us has read that from her post.
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Autumn10182001
Date Posted: Sep 05 2009 at 8:18am
|
Linda, your words could not express more accurately where I am... I don't know what to do... but I need you, all of you... I need your words.. to get me through until I can stand on my own feet again. I will wait until the PET and CT scan, before I make a decision either way. I loved my life until this cancer came up... this time.. I was living a full life after the first diagnosis and I fought that and one in 1999. This is much different, I am also afraid that the new chemos will make me too sick to have a life... That I could use some info on as well. Avastin, Carboplatinum, Taxotere.. those were what they mentioned Friday... all three together.. I can't imagine having a life and being able to do things on all of that the, AC almost killed me, kept me in bed for 4 weeks.. not sick,, just the chemo side affects themselves..I was nausea for 8 weeks, and not one anti nausea drug worked.. I don't want to go back to that either..
People (friends) keep telling me to go to another Dr or another place, I don't have the energy to set everything up, I don't have the energy to get all my records together, everyone else is so far away.. I have three different onc in this office that I am using. This last one is very big into the foods you eat for fighting cancer, and spices and diet... he is also open to alternative stuffs... not sure how much yet and I am not sure how much I am open to alternatives yet.
And then there is the attitude, what difference does it make now, I might as well eat rib steaks.... and all the junk I want... anyway, I thank you... all... Autumn ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: lady4law
Date Posted: Sep 05 2009 at 8:40am
|
Autumn
I have been fighting TNBC for 2 years, and just had my 10th surgery. (over 25 in my lifetime) Thank God, it was only scar tissue and not cancer. However I am still sweating out my next CT/PET/Bone scans,in 2 months. I have been having them every 6 months. This will be my 6th (5th?) not sure - think 6th - set of scans. My last scans showed lesions in my kidney, thryroid, sinus, mastoid, an area behind one eye, spinal activity, and a number of mini-strokes. My Onc in not concerned but my eye Dr is - he fears the BC may have spread to one of my eyes. (I am blind in one eye, and the area he's concerned with - of course - is my sighted y=eye) I will be undergoin my 3rd "procedure" on my spine Sept 11th. The previous procedures have been only to inject pain killers into my spine, first cortizone, second I forgot what he used, this time the surgeon will be burning my nerve endings to help with pain. My life over the last 2 years has not been pleasant, but then it's not for anyone fighting cancer (My son has been fighting cancer also for the last 3 years). Lost my hair with chemo, just as it started to grow, lost it again with more chemo. It has taken 18 months to have my 2 inches of kicky unmanagable mess called hair, but at least I now have something. I have a dear friend that has been fighting BC for about 6 years. She actually developed it while pregnant but her OB/GYN continued to tell her it was nothing. She went through all the same crap we all have then thought she was cancer free. She had her 2 year scans and was packed and on her way to a family vacation. Her family in the car outside the Onc's office, She ran in for something and was told her cancer was back and now in her bones and liver. She had only a 5% survival chance, and then only for a very short time. That was 5 years ago. She is now NED. She has been on WEEKLY chemo infusments for years. About a year ago she had to stop for about 3 months as it appeared to be effecting her heart. She's been back on the weekly infusments for over a year, still NED. If she wants to travel somewhere she can skip an occassional week or take a stronger dose and skip three weeks. She just accepts the fact she gives 1 hour ievery Wednesday morning, to live and see her children grow up. She has been a hero to me. She just never fave up, even when told she had 5 growths in her liver. PLEASE Autumn, don't give up. Not all chemo is like what we went thru the first time. I wanted to give up a number of times, but I haven't. Please, honey - fight - fight not only for your self, your family - but for all of us. Giant hug and lot's of love, Jean ------------- IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip |
Posted By: SagePatientAdvocates
Date Posted: Sep 05 2009 at 11:22am
|
Dear Autumn,
I, too, want to encourage you not to give up... I, further, also want you to try and do what seems impossible, as you mentioned and that is to get your records together...have someone help you if you must and go to a major cancer center in Boston or N.Y. and seek another opinion. Seeing three oncologists in the same office is not the same thing as a new facility putting new eyes/perspectives on your situation. The two I would recommend are Dana Farber in Boston and Memorial Sloan Kettering in NY. I know you are exhausted, fed-up etc. etc. and I understand why you feel that way and totally respect why you do. Nevetheless, this is your life and a new medical oncologist may have a different perspective, have access to a clinical trial that your current physicians don't have. You could be receiving the best medical advice on the planet now...I am not saying you are not nor am I criticizing anything that has been done. Please try to gather up your strength and go to a NCCN hospital that is up-to-date on everything...and I am not saying your 3 oncologists are not but the world of a NCCN institution may offer a different perspective for you.. You are blessed with a long-term partner who clearly loves you and a granddaughter and a marvelous dog....and as you can see there are many folks here who care about you. We are writing to encourage you because we have seen the unexpected.. My daughter telling me recently that she took a two mile swim...when I was with her as she went through chemo she could barely get to her bed to go to sleep.. There are no guarantees here but giving up hope does not help you in my opinion. I know you are struggling but please dig deep...maybe your dear partner can help you put your records together..can help you make phone calls to make appts. get stuff organized for you and yes it is all a giant pain in the butt....however the alternative truly sux...you impress me as a woman with too much love and courage in you to just call it a day... I think you want to have more good days with your partner, your granddaughter, and yes, your dog...and you may have to go through many awful days first..but there may be a light at the end of the tunnel and a new pair of eyes may be the key to a different plan for you.. please try your best to find the joy in each day..it's out there and yes, somedays it may be almost impossible to find..but maybe it's there and you overlooked it?...maybe somedays it is just the wag of your dog's tail when s/he sees you...maybe it's an aria, maybe a short story, maybe just a line of poetry, maybe just a short warm I love you from your partner. savor what you can and try to be positive.. we are all here for you...keep posting and folks will respond as they have recently...of that I am sure... in your corner, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Autumn10182001
Date Posted: Sep 05 2009 at 11:23am
|
Jean, thank you .. that gives me some hope.. I keep wanting to say .. how can they say I can't be cured... who the hell do they think they are.. then I say .. they are the ones with all the experience... they do know.. but only God knows.. and I don't want to die.. I just don't want to be sick all the time, and need somebody to take care of me, or be the reason my family loses our home... oh there are just so many things to think about.. and I want to enjoy life.. but even today, we took a ride to a friends house, I havent been to her house in a few years... she is the friend that has been taking me to chemo... and it is a beautiful ride and she has a beautiful yard.. she is a landscaper and gardener... and I didn't enjoy any of it.. I wanted to, but all i could do is think about my situation.
My friend leaves in Nov for 5 months... she has been my stronghold.. and now my thinking is, like , well I can't find someone to take me to chemo all the time, (before there was light at the end of the tunnel), now what will I do to get there, and who will go with me to get results.. my partner can't take off that often... and I work at home, so I spend soooooooo much time alone.... and I am so scared......then I say why.... others go thru this.. others doi it on their own... I am so confused..
I appreciate everyones support./. please just bare with me for a while..let me cry on your shoulders and lean on you until I can figure this out. my love to each of you.. Autumn ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Autumn10182001
Date Posted: Sep 05 2009 at 11:41am
|
Steve, My oncs work with Sloan... they are not affiliated with them, but they are on the phone with them and share patients histories for 2nd opinions, mind you ... my new path wont be in until Tuesday or Wed,, and the PET/CT will be sometime next week, so we wpon't know all the details for at least a week or so...
My partner is the best, however, she does not and has never ever understood a medical term in her life. If she goes to the Dr, she will come home and I will say, what did the dr say,., and she will say.. i got something with something.. she called in medicine.. and then I ask what kind.. Oh I don't know.. Don't get me wrong, she is not a dumb or stupid woman... quite the contrary... but she doesn't do medical or power tools (LOL)
 She does not go with me to appointments, her philosophy is don't pay attn to it, and it will go away.. althouhg she knows this will not go away.. it is just not something she can understand/comprehend.
She is also of the mind that I do chemo until I decide I can't anymore, and then stop it.. when I am ready and she will support me...so I can't complain, but she doesnt understand the sickness , etc that goes with chemo.. because she hasn't been there like most of us. But she loves me, and cares for my every need, but she can't be with me 24 x 7. well enough rambling.. thanks again..
BTW for those that have asked, I am on an anti depressant, and I am also taking ativan while I have been in treatment this time.. although he only allows me 2 1mg tablets a day... I think I am going to have to talk to him about that.. ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: mainsailset
Date Posted: Sep 05 2009 at 12:04pm
|
Autumn, I was on anti depressants and I have to say they didn't begin to help my fight depression. What has worked hugely for me is the 8,000 IU of Vit D3 that I've been on since June. It has kicked the depression right out the door and I'm all the stronger for it.
Please try the D3, it's something you can do for you and will help you take control back. And btw, the best onc team will be the first to tell you they don't have all the answers at any given moment, your answers haven't arrived yet, your book hasn't yet been written, so take a 2nd try and enjoying your friend's garden, don't let cancer close your eyes. ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: MsBliss
Date Posted: Sep 05 2009 at 12:36pm
| Autumn, have your doctors checked your vitamin D levels? It is becoming standard to check it for breast cancer patients. |
Posted By: MsBliss
Date Posted: Sep 05 2009 at 12:54pm
|
Autumn, of course the day trip didn't feel right and light. That is to be expected. You have a lot on your plate! Right now you don't see how you are going to do all this. It is clear from what you wrote that logistically, there is a big problem: how do you get to chemo, how do you deal with this without your friend, who is leaving, how do you handle the side effects... But there are options. It sounds like you need a medical advocate. This person would help you with medical choices, help you pick another doctor for a second opinion, help you get social services, which, by the way, you are probably eligible for. www.CancerCare.org (1 800 813-HOPE) has grants for transportation costs and other things. You just need to fill out a short form and fax it in. If you go to a major cancer center, they have medical advocates in house who can guide you and help you get services and transportation. When you call a major cancer center, tell them what is happening. They will likely refer you to an advocate who can help you figure out what to do on a step by step basis. When I went to a large oncology practice here, they had an advocate that changed everything for me. Same thing for MD Anderson. You need a better support environment that helps with these practical matters. You are feeling overwhelmed, we all do. It is more difficult for you because your partner doesn't know how to help you maneuver through all this. Getting your records together is detail work and time consuming; getting records is a major pain, but doing it will give you an added benefit. It will empower you. Okay, so if you don't get everything, don't worry about it. Just get most of it. You will compile a notebook or file with all your "stuff" and films. It means you can do your own research, and go for second opinions without feeling like you have no control or understanding of what is what. You will remember the questions that you need to ask that somehow slip away in all the chaos. |
Posted By: lady4law
Date Posted: Sep 05 2009 at 1:29pm
|
MsBliss and Autumn
Don't get too down about putting all your medical files together. I know exactly what you two have gone thru, including the depression. I was literally butchered during my mast. Some how my left elbow was broken and my right rotator cuff torned, both requiring more surgery. I also developed 2 infections requiring teo more surgeries, the wrong implants were placed and had to be removed, more surgery, the 1st PS, also screwed up on my fills, the expander slide under my arm, he continued to fillit, yep - more surgery to remove the stretched skin. (bottom line 10 surgeries in 2 years.) Now I am getting ready to sue and absolutely have to get all these medical reports in order to present to an attorney. (I am no longer in practice but would want to touch this case). Some days I just want to cry, but have no more tears left. In fact this weekend, I am going to paint the kitchen, to avoid working on this task all weekend. We are here for you, Autumn, and may God bless you and watch over you, Jean ------------- IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip |
Posted By: LRM216
Date Posted: Sep 05 2009 at 2:24pm
|
Autumn, Hi, it's Linda. First let me say, although I was only diagnosed in late Feb and have one horrid taxotere left (on the 9th of Sept), which I am totally dreading as it has just about demolished me, while I still have to work full time (am a widow) and raise my 14 yr. old grand-daughter (which is also no easy feat!). Then I go on to rads for 6 weeks, which HAS TO BE BETTER than all the chemo and it's horrid side effects. I have had them all, unfortunately, including neutropenia after each AC and even a week in the hospital. I am exhausted, I am depressed with my triple neg diagnose, which I try so hard to be positive about, but fail each time, and greatly fear when my treatment stops completely. I admire your strength and courage to have even gotten this far, I'm not sure I could have done it, and I sincerely mean that. That being said, I can well understand how you could want to just end this crap once and for all and let nature take its course. I have already told my family that I don't think I would ever be able to go through this again, should it come back. They are shocked and admonish me when I say that, but they have no idea what we go through. But this is the worst of times for you - everything is scattered all about you as are your feelings. It's as devastating as when you were told your first diagnose, only you had a bit more innocence and hope at that time.
All I wish for you to do is lean on us, as broken as we may be ourselves, we will hold you up as you decide what the best course for you to take will be. It's just too early for you to throw in the towel until you know what your options are, and as other posters wrote, there are several much easier chemos that can be used this time around. I will respect your choice, whatever it may be, and be there for you, no matter what. I wish I was geographically closer to you, to be there in person for you.
It's also very frightening for you at this moment in time, with no particular game plan handed to you yet, just your mind wandering back to what you have already gone through, and don't want to go through any longer. I don't blame you, not sure I could do it three times over either. With your partner going away for 5 months - that is also a very threatening and scary thing to have to deal with, and am sure that is also adding to your stress right now. I just hope you will take it one day at a time, one step at a time until all possibilities have been addressed.
We are here for you - 24/7. I wish you peace and serenity as you decide which path you will take.
Love,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: LRM216
Date Posted: Sep 05 2009 at 2:29pm
|
Brenda, there is no reason for you to be "out." I think you just misunderstood our responses to Autumn, who clearly doesn't want to die, but also doesn't want to continue living on ugly nasty treatments with no freaking guarantee of anything.
Please come back. We all need each other through this sh*tty disease we all have.
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Autumn10182001
Date Posted: Sep 06 2009 at 8:12am
|
all, I spoke to CTCA today, thank you Caryn. I am going to go there for at least a 2nd opinion. They don't want me to have my onc start a new chemo regimine this week, they want me to go there as soon as possible, and get my treatment from them. That is the part I don't like.. having to go to Phili every week... and for all the tests and stuff. so I don't know what I am going to do yet.
but if I can find someone to drive me to Phili, and stay with me the 3-5 days... they I will go for the 2nd opinion, and maybe decide to have treatement with them. They said, if I have a treatment with them, but then I am too ill to keep going there, they can work with my Drs here, but if I don't have treatment with them, then they can't.
It is a very hard decision, the hotel is only $ 45 a night there, but still.. . that is money I don't have. BTW someone said I may qualify for assistance, trust me we don't. I am still working and I make a fair salary, it is just everything has been put back in our home... so all we have is the house and that is not paid for. We have no savings.. and lots of bills.. especially now.
I just don't know what do to, I don't want to have to travel for treatment... I really don't.... if I can get the same chemo here that CTCA says they would give... why not stay here... I know they do other stuff.. holistic, massage, accupucture, meditation.. etc... but I am not really into that stuff anyway... thoughts ??? Thanks ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: mainsailset
Date Posted: Sep 06 2009 at 8:38am
|
Autumn, the hospital I go to has a little cottage that has 5 rooms, they are $15 a night per room. Perhaps there is something like that they can make available to you.
Also, circumstances changed for me this week and the resident social services person that works with my onc office has suggested going to the Susan Koemen site, she also filled out a fax request form for me that goes to them and they have a limited abiliy to financally help but can offer up to $400 she said in the form of coupons, say to Safeway.
Every penny counts as you know. And the financial burden is terribly real so if there is a social worker available to you inside your doctor's office, see if they can help out. ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: LRM216
Date Posted: Sep 06 2009 at 11:31am
|
Autumn - here are some numbers that may be a help to you from the Komen Board. Please check out this link - there are numbers to call for transportation, lodging costs, and even financial aid from Komen. Let us know what you find out. Perhaps if you can't call, a friend might be able to call some of them.
http://ww5.komen.org/breastcancer/resources.html - http://ww5.komen.org/breastcancer/resources.html
Hugs,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: MsBliss
Date Posted: Sep 06 2009 at 12:37pm
|
Autumn, wow. I didn't know they do massage. Is it covered by insurance? Anyway, if you aren't into it--then don't do it. But the supplements, you need to hear what they have to say. It can help turn the corner in conjunction with medical intervention, and it can make the recovery from any treatment easier. You may not qualify for government aid, but the bc organizations provide small grants and little doses of aid to help the "working poor". Check them out. |
Posted By: CarynRose
Date Posted: Sep 06 2009 at 12:47pm
|
MsBliss,
I am here to tell you that they offer massage (had a wonderful one recently), Reiki, Chiropractic, Naturopathic consults, Physical Therapy, nutritional consults, and pastoral support and it is all included. So, if your insurance will pay for CTCA, then it will include everything that they offer.
I have to say that I'm spoiled going to CTCA. (Last week, my chemo session was running very late because I needed an additional infusion and I wasn't going to be finished until 10 pm. My caregiver needed to drive home and so they sent me home -- about 45 minutes -- in a stretch limo.) They are completely patient centered. When I've had to go to other hospitals, I expect that treatment and then remember where I am. LOL
I think your suggestion about going to BC organizations is a great one.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: MsBliss
Date Posted: Sep 06 2009 at 1:44pm
| CarynRose, thank you for your response. if I lived near a CTCA I would be there in a heartbeat. The place sounds amazing. Massage, wow. Every visit to my naturopath is about $150, and the supplements are incredibly expensive. Sounds like the office visit is covered, but I'm guessing the supplements are a separate cost? |
Posted By: MsBliss
Date Posted: Sep 06 2009 at 1:46pm
| Where do you apply for the grocery coupons? |
Posted By: MsBliss
Date Posted: Sep 06 2009 at 1:52pm
|
Autumn, here is a short section of transport and lodging aid available. It is from the Susan G Komen website: There are so many places to check, the following list is just a partial, but the central listing at will provide more of other types of assistance. http://ww5.komen.org/BreastCancer/FinancialResources.html Transportation Assistance
American Cancer Society’s “Road to Recovery” Air Charity Network CancerCare Corporate Angel Network National Patient Air Travel HELPLINE Raquel’s Wings for Life Lodging Assistance |
Posted By: mainsailset
Date Posted: Sep 06 2009 at 2:21pm
|
Ms Bliss; the social worker was the one who told me that there would be coupons for places like Safeway. Apparently the form has to be faxed by a social worker such as mine, then a foundation member calls the patient and discusses what is available and what they can offer. This just happened on Friday so haven't had a call yet, but will let you know. ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: CarynRose
Date Posted: Sep 06 2009 at 2:23pm
|
Ms. Bliss,
CTCA will pay for all of Autumn's travel. They'll fly her in if she wants, or send her by train if she wants. The only cost that she'll have to put up is $45 per night for either a hotel room (at the Radisson nearby, and then take the free shuttle to the hospital) OR new dormlike rooms (with their own bathrooms) that they have upstairs in their own building. The latter is more convenient.
Cheers,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: MsBliss
Date Posted: Sep 06 2009 at 3:11pm
|
Thank you CarynRose. I didn't know that. When I went to MD Anderson, the plane fare was over a grand and the hotel was 160. To top it off, it was a train wreck of a medical visit. |
Posted By: Autumn10182001
Date Posted: Sep 06 2009 at 3:18pm
|
I just don't know what to do.. many say go to Sloan.. which is much closer, but my Dr's work with Sloan... so that makes no sense.. I guess until I get the results of the biopsy, and then the PET and CT scan, I don't really know where I stand...
CTCA sounds great... but it is alot of time away from my family, and most of it will be time alone, as I can't find people to travel that with me each time...
If both say the next step is carboplatinum, taxotere and avastin.. then the treatment is the same, and the one onc in this office is big time into alternative, and diet.. he already gave me diet info which I already knew from the book I got in April...
of course food with no margerine, butter, salt, and mostly fish, with no cheese, pasta, white flour products, etc.. sucks...
I do trust my oncologist to follow Sloan... and I love my surgeon... decisions, decisions, limbo and limbo... who the heck knows.... ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: LRM216
Date Posted: Sep 06 2009 at 4:50pm
|
OK, I am going to show my ignorance - someone please tell me - what is CTCA????
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Nancy
Date Posted: Sep 06 2009 at 4:54pm
|
Linda
Cancer Treatment Centers of America.
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: LRM216
Date Posted: Sep 06 2009 at 9:35pm
|
Aha! Thanks, Nancy. Boy do I feel silly!
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Autumn10182001
Date Posted: Sep 07 2009 at 5:16am
|
I feel so alone... the person taking me tomorrow is an old friend from high school, but we have not really kept in touch. It was suppose to be just for a chemo treatment, and now it will be to confirm the chemo isn't working and that I have to start a new regimin of drugs. or not and wait, and go somewhere else..
Do i start there, do I go to ctca, none of my real support team is available, they are all away... and Jenn (my partner) can't get off... because it is a small office and someone is already off... damn it.. I need her... how do i decide what to do.. she doesn't understand medical stuff anyway.. but I just want her arms around me...
people say go to ctca, some say go to sloan, others dana farber... some say if the treatment is the same I would get elsewhere, since i don't want to be away form my family all the time, stay near home.
I am so scared... what is the right decision... I wish I had the nerve to end it all.. my dog Autumn knows things are wrong.. she won't leave my side, slept with me all night...
GOD HELP ME MAKE THE RIGHT DECISION PLEASE !!! ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: dmwolf
Date Posted: Sep 07 2009 at 6:20am
|
Hi, Autumn. I'm with you in thinking that if you can see CTCA physicians periodially as second opinions and allow them to 'drive' your treatment, your life will be easier if you are treated locally. Otherwise, the travel sounds brutal. I made this choice, to be treated at my local cancer center (alta bates) rather than traveling into the city every day to be treated at UCSF. I liked being able to get to where I needed to go in minutes rather than after a long frustrating drive over the bridge. I saw a UCSF oncologist every couple months for a second opinion, which I used to weigh my options and decide what to do at decision points. Though with metastatic disease, I'm not sure what I'd do. Probably the same, IF I could get a commitment out of an oncologist I trust at a major center to drive my treatment as long as I need him/her. It's a tough call, no doubt. As for ending it all, well, you can do that any time. Right now you are emotionally overwhelmed, but am I right in thinking you feel physically good? Maybe what would help (and what I think I would do) is to feel in control of how long you will engage with the alligator. You could find a friend who will help you get what you need should you decide to end your life, and just know that if you ever decide to go that way, you can. Then the pressure is off. You can proceed one day at a time, truly, knowing that you are willing to give this living with treatment thing a try, but can at any moment change your mind and either live without treatment as long as you get something out of your life, or just check out. Maybe what you need is an escape valve. I also recommend some reading that will help you get a grip on the emotional side of living with uncertainty of this type, and dealing with fear. Forgive me for being a broken record, but I'll recommend Pema Chodron yet again, both her books and audiotapes. Living with Uncertainty, and Fear and Fearlessness are excellent. If you really have metastatic disease, and you plan on embracing the life that is left to you (which may be a lot! as in, many, many years), you'll need to reconfigure your point of view and emotional life. Pema can help, as can the women on this forum, especially those who have navigated the transition to living with metastatic disease. Much love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: trip2
Date Posted: Sep 07 2009 at 9:09am
|
Autumn, honey please don't give up. I know you are faced with some unknown issues yet but as someone said, one step at a time.
If it is confusing for you and possibly costly go to the closest place you feel works best in your life. If you feel you are not happy you can change , we hire them to make us as well as possible. You are worrying ahead, one day, or one hour til you get the facts. Try not looking on down to the what if's, we don't know what that will be. Safe your strength for now.
I'm so sorry your mate cannot be with you, many of us have to do the best we can and go from there. For the next doc vists take a tape recorder so there will be no confusion. Take paper/pen to make notes, ask questions, write it done.
We all have to find out way, some of us make mistakes but it can be corrected.
I have gone thru cancer twice, have CHF, many surgeries, nearly died from MRSA.
I do use a mild relaxant and a anti/depressant to help me cope but you know there were days I was so sick going thru treatment I just laid in a heap and told hubby I just didn't have it in me to move let alone go for more.
He said he would pick me up and throw me in the car if need be.
I have continued to be ill since treatments but we do the best we can. Decide what is best for you and please stay with us.
We love you and want you here for a long time.
Do you know if you were to start more treatments it gives time for something new to pop up around the corner, you just never know.
  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: lady4law
Date Posted: Sep 07 2009 at 11:43am
|
Autumn
I agree with Pam, the most important thing is to stay alive, "time for something new to pop up". My son was fighting cancer for about a year or year and a half before I was DX. His doctor gave him a very small chance of survival, in fact if the treatment worked - he'd still only live about 5 years. When I was dx - I was told I had a 50/50 chance it would return, and if it did, most likely would be within 2 years. I did not want to do the chemo crap. (forgive me). But my son talked me into it. He said, he had gone thru all his chemo, and it has been a LOT, (more than 20-25 individual treatments 4-5 "sets"). He said his Onc said he "might" live 5 years. The way he looked at it, in 5 years they may have another treatment that will give him another 5 years, and on and on, so he can live to be an old man. I agree and started the chemo. I had 3 treatments before my mast, then (just as my hair started to come back) went thru the whole thing again. My CT/PET/Bone scans looked perfect (every 6 months) until this May (23 months after being Dx! - almost the 2 years). My newest scans showed lesions in my kidney, thryoid, mastoid, sinus, and area behind one eye, (Eye speicalist fears mets in the left eye), "activity" in my spine and another area, and a number of mini-strokes. Like you, Autumn, I am scared to death and have felt like giving up, but I am still fighting. About a month ago, my pain doctor, started injections into my spine (for the extreme pain) The first one was shots into the area outside of the spine, the second set directly into L2, 3, 4, & 5. Neither worked, it only got worse. This coming Friday I will have my never endings burnt. Talk about scared. My son, medical expert, does not want me to have this done as he fears it may paralyze me. I just cannot live with the pain. Then there's all those mini-strokes. There is no rhyme or reason but it could get worse. Then what? Will I forced into a chair or bed. WE cannot give up Autunm! WE cannot let cancer do us in. WE must keep fighting. Jean ------------- IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip |
Posted By: MsBliss
Date Posted: Sep 07 2009 at 1:58pm
|
Editing.... |
Posted By: MsBliss
Date Posted: Sep 07 2009 at 1:59pm
|
Autumn, No one can tell you the "right decision". There may be no "right decision". I think it is more about information gathering, and perhaps, confirming your choices. I relate to your indecision--being the last born, I cannot make a decision to dowse a flame, even if my pants are on fire! Your indecision is because all of this is so daunting. Take smaller steps. If you can muster it, go to CTCA and check it out. They are seriously good, and if they recommend the same protocol as your current doctor you will feel better at ease in their care. Don't forget the nutritional and supplement effort. It is important. |
Posted By: LRM216
Date Posted: Sep 07 2009 at 2:59pm
|
Autumn - there are just so many things on your plate right now - any one of us would feel the apprehension and indecision that you are going through right now. I think you need to take this, as was suggested by so many of us, one step at a time. Don't look down the road right now to months ahead. Go to whatever place is the easiest for you to get to right now, and see what they say is the best route and compare it to what you have already been told (or will be told). Take one thing off the plate at a time - it's all so overwhelming and not to have your partner there with you is only adding more anxiety for you, but we have to work with what we have at the present moment. I am a widow raising my 14 yr. old grand-daughter, working full time because I need to financially and I get so overwhelmed at times, as my only "cancer buddy" through this whole thing has been my mom who is 86! I thank God I have her by my side through my chemos and the 3 or 4 days following each she stays with me full time, but sometimes I feel as though I have two kids to deal with! We do only what we can. Please - take a deep breath, and figure out firstly, which is the most convenient place for you to go at this time with your friend, take that pad and pen with you - write down everything, or the tape recorder if you have one is an even better suggestion, and start from there. Good luck and God bless. I am sending you cyber strength and serenity, love and prayers. Linda
------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Autumn10182001
Date Posted: Sep 08 2009 at 3:11am
|
I sit here alone waiting for my ride to the onc office, for what I don't know.. old chem, no chemo, new chemo, scripts for new tests, bad results... a vice around my heart crushing the life out of me... shaking... physically shaking... scared, alone, alone , alone... my thoughts all stolen and thinking of nothing but the death this TNBC will bring.. more tests.. to get more bad results is all I face, why.. why Lord... why do I feel so alone.... please God help me... ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Autumn10182001
Date Posted: Sep 08 2009 at 5:52am
|
No chemo today, path not back yet, PET and CT scan tomorrow at 9am. they are running tumor markers as well... will not get results until next week when I go in for my appointment. They don't want to give anything over the phone, and my onc is on vacation this week, although she did speak to him today. depending on test results, treatment will be taxotere, carboplatinum, and maybe avastin.. no one will tell me anything about how long i have, or anything else until they get those results in.. and why can't I think the carboplatinum can turn this around and put me in remission... I am having them set me up with Sloan for a second opinion, they are going to send everything there after they get them, and then I will go down there. they will work with Sloan so I get treatments recommended by sloan. They are talking to a shrink to get me better anti anxiety drugs.. hopefully today... I am still lost.. I feel like there is no hope... God help me... please.. ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: TexasGal
Date Posted: Sep 08 2009 at 6:06am
|
Autumn,
Seek him, trust in him, & have FAITH in him, and he will bring you peace.
I will say a special prayer for you, dear. Please know that you have many many people in your corner....
|
Posted By: dmwolf
Date Posted: Sep 08 2009 at 7:37am
|
Autumn, I'm sending you a big, warm hug. You are courageous in speaking your truth when life feels dark. We all appreciate your candor and vulnerability. Know that you speak for every one of us at some time in this process. We all understand, as we have all visited the dark place you speak of. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: MsBliss
Date Posted: Sep 08 2009 at 12:30pm
|
Autumn, I met a patient with the same script as you. She felt alone and said she could not stop trembling and the thoughts of dying from this thing invaded her thoughts and over took every notion she had. The waiting and the not knowing was all too much. The lack of hope was overwhelming. There was no logic that could over come her innate terror. Not even faith. It was all blackness and nothingness. I asked her if she felt that there was a purpose to her suffering. "No, no purpose". "I don't mean a purpose in the grand scheme, or in relation to your G d; I mean a purpose biologically--a reason that you cook up these frighteningly hopeless and dark worlds for your mind to live in, because, you are very good at this". She paused and said: "I guess I am good at this because I have coped this way before. This is what I am made of". It is a reflex. Autumn, this is how you cope. I think this is how I would cope, maybe most of us, but we don't put it in writing. You are dealing with an impossibly frightening scenario. Before, you were able to deal with this disease because you had some hope. When you got another recurrence, you shoved the reality of the worst possible scenario into your conscious mind. You are holding onto it like a dog with a soup bone. Not for no reason. If you hold onto it tight enough, maybe it will be stilled and controllable somehow. But, you are not without power. The cell you are fighting is not invincible. If you choose to get treatment, I ask that you consider a CAM protocol integrated with your medical treatment. A CAM protocol works in conjunction with chemo and other medical therapies. Chemotherapy molecules are powerful and they work--but there is excellent evidence that they work even better with a CAM protocol. A good one was authored by Edge, also known as Constantine. He did his homework on this and it is not a flimsy routine of feel good pseudoscience. It is valid. Imagine what it would feel like if you triumphed over this dark time. |
Posted By: Julia
Date Posted: Sep 08 2009 at 12:39pm
|
Hugs and prayers for you. ------------- Diag. 3/09 TNBC, IBC, 55mm. 4 rounds AC, 4 weekly Paclitaxol. Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads. 2 more rounds of A/C, 6 months low-dose CMF. |
Posted By: NINASUZIE
Date Posted: Sep 08 2009 at 1:04pm
|
Well I see that everyone has rallied to a dear Sis once again as I join on again.....Autumn, I live near Boston and you can stay with me...pm me if you decide to try Dana Farber, where I go. I can help with air "angels".
And you ask the best questions...why not, what if...I love you, Sis! Thank you for trusting us to hold you up and we will NOT let you fall!!!
We are all here everyday and in so many ways. I hear the love in your family and the anguish and torment of your heart....
Keep your feelings and thinking pieces for whatever your decisions, for I too have battled seeing ending it in the wretchedness of some scary nights.
And everyone....you are all the best!!!!! Hugs of love and healing,
------------- Suzie ************** Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11 |
Posted By: SusanE1104
Date Posted: Sep 08 2009 at 1:14pm
|
MsBliss,
I've never heard of CAM Protocol. Is it something you can define easily here? Or can you direct me to a web page that would explain it?
Susan ------------- Susan 62 1987 Stage 1 1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin 8/09 NED 12/09 liver mets Taxol/Avastin 4/10 liver mets 11/22 Parp Car/gem parp failed 2/2011 Ixempra |
Posted By: unklez
Date Posted: Sep 08 2009 at 1:18pm
|
Susan,
CAM is Complementary and Alternative Medicine. It includes things like naturopathy, e.g. supplements, minerals and herbs, yoga, meditation, etc. Regards, Unkle ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: MsBliss
Date Posted: Sep 08 2009 at 3:05pm
|
CAM is complimentary alternative medicine. It is always intended to interface with your medical intervention or chemo. Except for a few items, usually after chemo is completed. I could not do chemo, so I am using a version that is tweaked for my situation. There are many sources for CAM protocols. One of the best is at this website, and this is the actual latest protocol from Constantine: http://nosurrenderbreastcancer.websitetoolbox.com/post?id=3654841 There are many protocols, most overlap on the critical elements listed on this one. I have added a few other items that to which my research led me. But my protocol is pretty much as stated here. |
Posted By: CarynRose
Date Posted: Sep 08 2009 at 3:19pm
|
MsBliss,
I didn't know you were on No Surrender. I love Constantine/Edge and sent Autumn a copy of his latest on TNBC.
He helped me so much when I had the lepto mets and I'll always be grateful. At first, my doctor and Nurse practitioner sort of poo-poo'd what he was saying because they couldn't find evidence based proof that what he suggested was true, but literally a month later, they were suggesting the same protocal.
What is your S/N there?
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Nancy
Date Posted: Sep 08 2009 at 3:56pm
MsBliss,
Ahhh! Yet another link made hot for you
Nancy
http://nosurrenderbreastcancer.websitetoolbox.com/post?id=3654841 - http://nosurrenderbreastcancer.websitetoolbox.com/post?id=3654841 ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: SagePatientAdvocates
Date Posted: Sep 08 2009 at 4:12pm
|
Dear Autumn,
you have been, are and will be in my prayers.... I hope your scans go well tomorrow... we are all rooting for you...so you will not be alone in the room... you can count on us.. in your corner, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Laura123
Date Posted: Sep 08 2009 at 4:28pm
|
Autumn.
I was just diagnosed with BC a month ago and so far no one has said the words TNBC to me. I am 48 years old, no children and live alone. I am ER-/PR-/HER(2)-/BRCA1-/BRCA2-. I have a great support system but being an only child and having my parents living 800 miles away....I know the feeling of alone. One thing I rely on is my faith in God. I am afraid of what lies ahead for me. You are not and never will be alone because we are all in this TOGETHER!
Hugs from Michigan!
|
Posted By: Autumn10182001
Date Posted: Sep 08 2009 at 4:35pm
|
All, I am doing a little better tonight. I sat with a friend today, one of only two that I would trust to assist me with the task of laying out the facts, the advantages (for me) and disadvantages (for me). My cousin MaryAnn and I spoke last night, she used to be a pharmaceutical rep. She checked some web sites, and found out that the NCI rates Sloan as number 2 in the USA, (MD Anderson is # 1, but that is Houston.). MD scored 100% and Sloan 94.something%. The next one is down in Baltimore and was scored I think in the 62% area. My cousin lives in Maryland. Dana Farber is number 5 on the list I think. Anyway, no chemo today... PET and CT at 9AM tomorrow. my friend Lori is taking me. She left work today after I called her and she was here in 40 minutes. and is taking off tomorrow morning. We did alot of searching on the internet, and we made lots of lists of things. I have made some decisions. First and foremost, I must wait for the results of the complete pathalogy and the PET/CT scans. There is a possiblility that the nodules are not cancer, and I am praying that the full report will show that. I talked today with the onc, they talked to a shrink which ordered a new med, and said I do not need to see him, since I am seeing a therapist, it would be stupid for me to dump everything on him as well. I wrote down what it is, but I haven't researched that yet.. so I have to check out what it is, before I decide, if it is a sleep thing, as he wants me to take it at night, to get more rest. that is not what I want. So that is work for later tonight or tomorrow. I have decided to go to Sloan for my second opinion. After the results come in, my onc will send everything down to them and set up an appointment. My onc said that they believe they know how to treat TNBC, although CTCA will do other things outside the protocols, but that I will not feel comfortable with my decision unless I get a 2nd opinion, so they want me to get one. It was my choice by working with my cousin and my friend Lori today, to go to Sloan . One thing we determined today, is that I do trust my team. My onc, who has been on vacation since last Thursday, and is not back until Monday, has all the current info, and called Sloan to talk to them about ME specifically, last Friday. While on vacation. They explained today, that if I do NOT have mets, why they would like to hold the other chemos in their back pocket, so that if I do get mets, we have more options to use. However, if there are mets, it will be (probably) taxotere and carboplatinum at this time. He may hold the Avastin in his back pocket. Remember, If Sloan thinks differently, my Drs will work with Sloans recommendations. I am sure that CTCA is very good... and I don't want anyone to take any of this wrong.. but I had to lay out the facts as they pertain to me, and my mental health. They of course are always an option, but I will say that I have rec'd both good and bad reports about CTCA. They also do not fall into the top 200 cancer centers in the usa. So please keep an open mind to my reasoning.
If I chose CTCA, I have to for the most part, sign up for all my treatments there, which means travelling by train, alone except for the first time, from here to NYC - 1 hr 45 minutes by train, and then take a train from NYC to Phili. I can't see me on chemo, navigating the trains and all the walking that would be needed to do this, as well as the train rides. I would also be away from the reasons I want to live, and sit in a hotel room, alone most of the time, which is absolutely no good for me. my home, gardens, my patio, i built with a fire pit, my lawn, wife, granddaughter and my dog.
CTCA talked about your team being under one roof, well my therapist has known me 28 years, my oncologist team 10 years, my maseusse, 9 years, although I received an oncology magazine today, out of nowhere, never heard of it, that says massage is not good to have during treatments or while you have cancer, that studies have shown that it can help cancer spread thru the body, as well as help the cancer grow. So for now I cancelled my massage.
I have a nutritioinist and a surgeon on my team, btw the surgeon made it possible for me to have a nutritionist at no charge. My pastor has been my pastor for 9 years. These folks are my support system, as well as my friends , both near and far, and you all here.
When I bring things to the oncologist office, (granted on two occassions he ticked me off, he didn't have time to talk other patients), but working with the PA , everything I have brought to them, they have been able to talk to , or they have called sloan. Also, the onc I saw on Friday, he is right, I am incurable, not that it can't be put in remission, but he is into
diet, supplements, some holistic stuff, in addition to chemo, and after chemo. So I am going to see him for now, every month, to go over some of the things that I have found and that you have brought forward, vit D3, and getting other tests done on my tumor, which the PA told me today , they will be doing some more if I have mets.. or if these nodules are cancer.
So with all that said, I am comfortable with my team... and they are close to home. and CTCA is always an option, just has dana farber would be, etc.
We also made a list of some things I need to do.. work on my diet, exercise, gratitude list, living in the now, and I have this thing about not leaving a legacy, but Lori talked with me today, and although my legacy will not be with children, I have one, and I want to write some of that down for me... so I remember.
So while I wait for the test results and am still fearful of mets.. etc. I now have a plan, even if it is just my own plan, at the moment, as to how I plan on moving forward.
So feel free to point out where you think I don't make sense, and maybe where I do... and keep praying and holding me up... i will probably not get results until next tuesday when my onc gets back... so I have a wait on my hands. My love to each and everyone of you... and thank you again. Autumn
------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: LRM216
Date Posted: Sep 08 2009 at 4:48pm
|
Autumn - Wow! You sure have put your mojo into motion! You have accomplished so much and I am very proud of you, as you must be of yourself. That took a lot of emotional and physical energy. I think your plan sounds fantastic, and I think the most important thing is that it sounds compatible with how your feel and think at this time. I am so glad your Maryann and Lori are there to help you along this journey.
No one but you needs to feel comfortable with what you have decided, although I am sure every poster on this thread will be happy for you. The alternatives can always be gone back to at a later date should you desire.
I am wishing you the very best of news and luck and sending you much love. Please post everything you can to us so we too can be there every step of the way with you.
Now, do take that deep breath - you have done much!
Love,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: unklez
Date Posted: Sep 08 2009 at 5:05pm
|
Great plan Autumn. It is very important to have YOUR OWN plan and you have done it!
You can not go wrong with Sloan. Have you picked an oncologist there? If not, I can send you some names from my research although we don't have direct experience with their oncologists yet. When you call Sloan, if you don't ask for the specific oncologist by name, they will send you to one whose calendar is free and we all know what that means! Also, just so you have another option, in NYC also is Weill Cornell Research Hospital. Dr. Linda Vahdat is well known and does only breast oncology. She has been in Cast Connolly list every year since 2001. ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: Autumn10182001
Date Posted: Sep 08 2009 at 5:14pm
|
Please send me the dr's names you have research.. and thank you so much.. ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: dmwolf
Date Posted: Sep 08 2009 at 5:50pm
|
Look at you, Autumn, unleashing your inner lioness! I am thrilled for you, thrilled that you have noticed all that inner strength, the steely core within that you can count on to see you through. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: MsBliss
Date Posted: Sep 08 2009 at 7:34pm
| Thank you Nancy! |
Posted By: MsBliss
Date Posted: Sep 08 2009 at 7:41pm
|
Oh yes. I love that site, and I love G, her humor and her wonderful energy. You are right about Edge's recommendations being validated; at least that has been my experience. My doctors have been very impressed with his research and treatises. They have trouble keeping up with the data in real time and Edge is on it. I also have proposed to Edge, but there is a long line as I have learned! And my husband wasn't all to happy about that either! I use the same name there, MsBliss. |
Posted By: unklez
Date Posted: Sep 08 2009 at 7:55pm
Dear Autumn, Here are my top medical oncologists that provide Breast Service at Sloan: Dr. Hudis, Dr. Dang, Dr. Norton, Dr. Gilewsky Call 646-497-9064 and ask for them by name. Let us know how it goes please. Regards, Unkle ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Autumn10182001 wrote:Posted By: trip2
Date Posted: Sep 08 2009 at 8:51pm
|
Autumn,
Just wrote you a long post which didn't go thru.
I wanted to remind you to request a copy of every scan, bloodwork, anything you have done either to be mailed to you or get a copy from your doc.
Start your own file and be sure and read these reports. Sometimes the docs don't always tell us things on there that we might want to know but it may not pertain to what they are doing.
You are never alone, there are over 2,000 people here to help you get thru these dark times. Sounds like you have a plan of action so that is a good sign.
Good luck with your scans, hope it all goes well for you. Let us know.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Wendy2
Date Posted: Sep 09 2009 at 3:20am
|
I can't take the throwing in the towel thing. PLEASE. I took Avastin and Abraxane which isTaxol without cremphor (recommend) - I'm still here. On Xeloda now - mets diag. 3/08. Don't give up. That is the one thing we cannot do. Keep fighting. The Avastin/Abraxane worked and was not bad on me at all. Xeloda is worse for me but I'm taking it. Please don't give up hope - antidepressant might help - this is depressing, but life is still worth living. Every chemo is different for everybody, at least try!
Prayers and Hope
Wendy ------------- dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches |
Posted By: MsBliss
Date Posted: Sep 09 2009 at 12:06pm
| Wendy, I was prescribed CT x4 too. Were you originally stage 1? |
Posted By: Autumn10182001
Date Posted: Sep 09 2009 at 12:53pm
|
Hi all, well I had my PET scan, and the CT scan... so now it is wait and see. still waiting on the final path report of the nodule biopsy.. they said my Drs office will have the results Friday, but I don't think I will get them until Tuesday when I go in for my normal chemo appt, my onc is on vacation until Monday.. although they have been in contact with him numerous times last week and this week about my case. so who knows.. then I say, should I just not try to get results until next week.. and try to enjoy the weekend.. have to wait and see what happens. Today was an ok day all things considered.. i went to the store and bought lots of new spices, since salt is on the list of things that help cancer grow...
So i am learning to eat fish and chicken and veggies with lots of pepper and other type spices... going to try Tuna steak tonight... hard to eat things without sugar, salt and butter... but I guess I will learn... Update you all as soon as I know anything.. or if I start to lose it again... Thank you all for your support..
BTW, i do have copies of all reports that I have received so far, someone brought that up earlier, Thanks again ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Carol (Tenn)
Date Posted: Sep 09 2009 at 6:55pm
|
Hello Autumn.
Your story is so much like mine...I found a lump right below the incision just four months after I finished my chemo and rads.
I had the lump removed and it was cancer. It was a recurrence of the primary cancer. Not a new one, which is good news.
My onc said that chemo didn't do it the first time around so no point in doing that again. Now if its mets, then chemo would be back.
So now for the obvious....and repetition....Don't give up...you have too much to live for. I also said that if it came back no more chemo for me...but when the time came I would have done it in a New York minute.
Please just try to live every day the Lord allows you to have to fullest. Enjoy your family and friends and put the negative thoughts away.
If you are not currently taking an anti-depressant, I would advise you to. It sure helps me deal with all this. I take Zoloft and am glad I do.
I am a grandmother too. I want to see my grands grow up...my olderst is in her 2nd year of college and plans to be a doctor. I want to see her do that.
The next one is a senior in High School and is a star football player and I want to see him play in the state tournament. They missed it last year by one game.
Third is my 8th grader and soooo smart...high IQ..I want to be here to see what he does with his life.
Fourth and last is a 5 grader and is quite the little beauty....it will fun seeing her mature...now she's 11 going on 20...
So Autumn, list your dreams just like I did...and you will see...LIFE IS DEFINATELY WORTH LIVING! ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: MsBliss
Date Posted: Sep 09 2009 at 9:15pm
| Autumn, regarding the reports, the reason it was brought up was because you said you couldn't deal with getting your reports together for the second opinion... |
Posted By: Autumn10182001
Date Posted: Sep 10 2009 at 4:16am
|
Ahhhh.. i meant things like how much quanttiy wise I have ad of each med, and how many rads... type stuff.. thank you ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Autumn10182001
Date Posted: Sep 11 2009 at 6:45am
|
GREAT NEWS !!
nodule that was removed is benign. and the CT scan of the pelvic area and abdomen is clear, and the PET scan shows no evidence of metastisis. yeah... !! everyone thank you for your prayers... and please, please give thanks to GOD, this is GODs work and he deserves the credit... please thank God...
I know I am not out of the woods forever, but I am doing good now, and I am still part of the 30% that has a chance of not having a reoccurrence.... so today I celebrate - restarting Taxol on Tuesday.... 5 to go....
Everyone thank you... and please , please thank God.. this is Gods credit not mine.
Everyone have a great weekend... Love Autumn ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Nancy
Date Posted: Sep 11 2009 at 8:29am
|
Dear Autumn,
That word is such a wonderful word...BENIGN!!!!!!!!!!!!!!!!!!!!!!!!
For you to hear that there is no evidence of mets is also fantastic!!
Here is a quote which Lori has used since diagnosis.....
"Worry never robs tomorrow of its sorrow, it only saps today of its joy. " ~Leo Buscaglia
It must be extemely difficult for anyone dx with any type of cancer to forget this even for a day, but Lori is managing to have a life after bc. You will too Autumn!! Love,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Carol (Tenn)
Date Posted: Sep 11 2009 at 10:57am
|
Autumn...so happy to hear your news....God is good...always was, always is and always will be!!! ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: unklez
Date Posted: Sep 11 2009 at 11:39am
|
Autumn,
We are so happy to hear your news. You deserved to hear this today and not be asked to wait till Tuesday. Please can we close this thread and open another one with a positive title? I cringe every time I get an email that reads "I am giving up". Regards, Unklez ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: Autumn10182001
Date Posted: Sep 11 2009 at 11:51am
|
DOne ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: SagePatientAdvocates
Date Posted: Sep 11 2009 at 12:05pm
|
Dear Autumn,
CONGRATULATIONS!!!!!!!!!!!!!!!!! all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: trip2
Date Posted: Sep 11 2009 at 2:08pm
|
Autumn,
How wonderful, what a relief, I am so happy for you.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: LRM216
Date Posted: Sep 11 2009 at 3:26pm
|
Oh Autumn, words cannot even begin to say how relieved and happy I am for you. Have a wonderful weekend.
Love,
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: MsBliss
Date Posted: Sep 11 2009 at 5:08pm
| I second that emotion!!!!!!!!!!!!! |
Posted By: MsBliss
Date Posted: Sep 11 2009 at 5:09pm
| Autumn, congrats. Wonderful. |
Posted By: Wendy2
Date Posted: Sep 13 2009 at 7:24am
|
Now no more of that "giving up" talk, ya hear!?
Go girl.
Wendy ------------- dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches |
Posted By: lady4law
Date Posted: Sep 13 2009 at 5:21pm
Wonderful news! Thank you GOD! 
Giant Hug from Los Angeles! Jean ------------- IBC/TN 6/07 Lymph, Chemo, Mast w/rec, chemo, 2 infect surg, exchg (2x) redo rec (2x) 4 new tumors esophagus, colon, chest, mouth, (10/11- 5th SUV7)"Activity" in spine hip |