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Autumn10182001 
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Joined: Aug 18 2009 Location: Highland, NY Status: Offline Points: 557 |
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 Posted: Sep 06 2009 at 3:18pm |
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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....
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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
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LRM216
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Joined: Mar 18 2009 Location: Marietta, GA Status: Offline Points: 1196 |
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Posted: Sep 06 2009 at 4:50pm |
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OK, I am going to show my ignorance - someone please tell me - what is CTCA????
Linda
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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 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Sep 06 2009 at 4:54pm |
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Linda
Cancer Treatment Centers of America.
Nancy
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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 |
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LRM216
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Joined: Mar 18 2009 Location: Marietta, GA Status: Offline Points: 1196 |
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Posted: Sep 06 2009 at 9:35pm |
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Aha! Thanks, Nancy. Boy do I feel silly!
Linda
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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 |
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Autumn10182001
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Joined: Aug 18 2009 Location: Highland, NY Status: Offline Points: 557 |
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Posted: Sep 07 2009 at 5:16am |
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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 !!!
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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
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Sep 07 2009 at 6:20am |
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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 |
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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.
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Sep 07 2009 at 9:09am |
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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.
  Edited by trip2 - Sep 07 2009 at 9:13am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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lady4law
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Joined: Jul 12 2007 Location: United States Status: Offline Points: 274 |
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Posted: Sep 07 2009 at 11:43am |
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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 |
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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
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MsBliss
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Joined: Apr 25 2009 Location: Lost Angeles Status: Offline Points: 722 |
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Posted: Sep 07 2009 at 1:58pm |
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Editing....
Edited by MsBliss - Sep 07 2009 at 2:00pm |
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MsBliss
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Joined: Apr 25 2009 Location: Lost Angeles Status: Offline Points: 722 |
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Posted: Sep 07 2009 at 1:59pm |
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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. |
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LRM216
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Joined: Mar 18 2009 Location: Marietta, GA Status: Offline Points: 1196 |
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Posted: Sep 07 2009 at 2:59pm |
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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
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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 |
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Autumn10182001
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Joined: Aug 18 2009 Location: Highland, NY Status: Offline Points: 557 |
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Posted: Sep 08 2009 at 3:11am |
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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...
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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
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Autumn10182001
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Joined: Aug 18 2009 Location: Highland, NY Status: Offline Points: 557 |
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Posted: Sep 08 2009 at 5:52am |
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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.. |
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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
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TexasGal
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Joined: Sep 07 2009 Status: Offline Points: 49 |
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Posted: Sep 08 2009 at 6:06am |
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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....
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Sep 08 2009 at 7:37am |
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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 |
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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.
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MsBliss
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Joined: Apr 25 2009 Location: Lost Angeles Status: Offline Points: 722 |
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Posted: Sep 08 2009 at 12:30pm |
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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. Edited by MsBliss - Sep 08 2009 at 12:32pm |
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Julia
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Posted: Sep 08 2009 at 12:39pm |
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Hugs and prayers for you.
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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. |
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NINASUZIE
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Joined: Mar 01 2009 Location: United States Status: Offline Points: 323 |
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Posted: Sep 08 2009 at 1:04pm |
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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,
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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 |
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SusanE1104
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Joined: Jul 24 2009 Status: Offline Points: 436 |
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Posted: Sep 08 2009 at 1:14pm |
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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
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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 |
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unklez
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Joined: Sep 05 2009 Location: New Jersey Status: Offline Points: 1000 |
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Posted: Sep 08 2009 at 1:18pm |
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Susan,
CAM is Complementary and Alternative Medicine. It includes things like naturopathy, e.g. supplements, minerals and herbs, yoga, meditation, etc. Regards, Unkle |
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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.
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