New Posts New Posts RSS Feed - Anyone refuse chemo
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Anyone refuse chemo

 Post Reply Post Reply Page  <1234 5>
Author
ElsaHope View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 13 2017
Location: Usa
Status: Offline
Points: 12
Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2017 at 2:59pm
Lucky,
No, oncologist are suggesting to avoid radiation due to my braca gene.
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (2) Thanks(2)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2017 at 7:58pm
Reading all these thoughtful replies it occurs to me once again (some days I wish I could erase all my Tneg memories and brain cells) that we all have to consider that there are 9 subtypes of Tneg (at least) and among that group there are differing chemos that work or don't. So even if a dozen people replied to tell you they opted out of chemo and were still here to tell their story, they really wouldn't be giving you the whole story because there's a good chance they didn't have the same sub type that you have.

When I first asked the same question as you, I had a very frank conversation with a member here named Connie who told me...Tneg is wicked smart, it's aggressive and it will go all out to getcha. You can't deny yourself every single opportunity you're given to fight back. Most of us don't get 2nd chances on Tneg, if it comes back it generally goes beyond your breast to an organ and so very much harder to fight. Then she said, when you're offered chemo ask them to throw the kitchen sink at you, don't back off.

I've remembered Connie's words for a long time. I did choose to throw the kitchen sink at tumor, going for a clinical trial. Then I followed up with a dbl mast and radiation. All during my treatment Connie kept coaching me to keep at it. I think she got great satisfaction out of encouraging women to fight. You see, Connie didn't make it, she didn't have access to the treatment that's around today. Treatments have come so far in a very short time period and women today that are faced with Tneg have better chances of complete remission than at any other time. I, for one, am truly hopeful that you won't decline the chemo but will give it a go.
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
Back to Top
ElsaHope View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 13 2017
Location: Usa
Status: Offline
Points: 12
Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2017 at 12:01pm
Thank you for your thoughts and reading my question. I am not getting much responses from anyone who has said no, and it makes me even more nervous and stressed about my decision. Did Connie not have chemo?, I am so sorry she is no longer with us.
I am so afraid to throw the kitchen sink at it because I have a braca gene and am very worried doing chemo may create mutations or make it worse. My oncologist already seams to think that radiation is not a good idea for me because of the gene. This is SOOO hard, I have physical ringing in my ears from all my brain is trying to understan.
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2017 at 12:41pm
I seem to remember that the box of time before my team and I came up with a plan was by far the most stressful. It didn't seem like the answers arrived and I had to dig for every single piece of information.

Connie had chemo, but back in '09 there weren't that many choices of what to do if it came back, nor did we know that there were actually 9 subtypes that reacted differently to different chemos. She could not access some of the trials or the drugs that were new to the market. Her wonderful onc took a job elsewhere to do research and was not there to fight for her. It was very very sad.

If you take the time to look at postings here, you will probably see that often women are, what I call, 'under treated', particularly when their tumor is small. There seems to be some kind of assumption that a small tumor just won't be as deadly as a big tumor. It's a personal thing I have that I want to argue about because I resent seeing women here who have a recurrence likely because they did not get advice to be aggressive in their choice of treatment. (sorry for rant, but I don't want to lose another member of this family).

There is a definitive reason to have chemo, to have surgery & to have radiation. Early stage (where you're at now) is night and day different in its ability to be treated than if you have a recurrence. The BRCA is something that wasn't even an issue when I had treatment, in fact when Connie brought up a test and I asked, I was declined.

What helped me in making my decisions was to go and get a 2nd opinion. I know it sounds like the opposite of how you want to spend your energy right now but 2nd opinions are wonderful, you will learn something, it will settle your anxiety and give you purpose. I don't know where you are but perhaps if you tell us, someone here can give us the name of a Tneg specialist in your area. Also, your own onc will not be upset if you just ask him/her for the name of a Tneg specialist to refer you to.

Remember to get copies of all your medical information in paper form every time you see a medical professional, put them in a 3 ring binder, read them and study them. Get to know what they say because I can say from first hand knowledge that every once in awhile medical staff screw up and you want to be able to hand them a copy of work done and say, 'no' or 'yes'.

Also, don't think that you have to know everything. Instead of saying, 'I don't know all the questions to ask' maybe start with I want 2 or 3 options, I want to know my quality of life, I want to know what not to do.

I'm so glad you posted, I hope this helps.
   Mainy
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
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 1154
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2017 at 2:49pm
Mainy you're once again able to communicate what so many of us are feeling and thinking about her awful struggle. There have been so many women come here the last nine years facing stage 4 TNBC from obvious poor medical care, especially the young women. It's What keeps many of us survivors coming back, our fight to get the word out about the differences in our disease, and the life saving options available. it's what keeps our guardian angel Steve working desperately around the world helping women with TNBC. My suggestion is that you contact Steve, Elsa. He found out he carries the gene when his daughter was diagnosed with TNBC at around 30 years old. Hes a volunteer patient advocate and has helped so many people, especially women with this disease IN the years since. My husband and I know that he saved my life last year when I had a reccurence. he got me an appointment with one of the best doctors in the world at MD Anderson, which I never wouldve been able to obtain without him. he was even at MDA for most of my appointments. Second options save more lives than any one treatment ever has. I've never heard of anyone that regrets getting a second opinion. Steve is listed as Sage Patient Advocate here in the board. Please at least contact him and have a chat. Information IS power!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2017 at 4:35pm
Thank you for kind words Kellyless. I'm so glad to hear that Steve was able to intervene for you so you could get the best care. Wishing you and yours the very best Christmas this year!
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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2017 at 10:20pm
Elsa,

Connie was a very wise person who greeted me and helped me when I was first diagnosed and going through treatment in 2009.  What I've learned through the years is that TNBC is aggressive, doesn't play by the normal rules, some smaller tumors are more aggressive than larger tumors.  We have one member, who was dx stage 4 at the initial diagnosis with only a 1 cm tumor.

I've shared my story, but will tell it again so others can understand how unpredictable TNBC is.  I was dx with a small tumor, stage 1, 1.5 cm, bilateral mastectomy with good margins, clear nodes (0 out of 5).  My KI-67 % was 48%.  By all of these statistics, you'd think my odds were very good.  I still did chemo even though it scared the *@#) out of me.  My odds with chemo gave me about a 12%/13% recurrence rate.  So I had an 87% chance of being cancer free.  

Fast forward about 13 months after finishing chemo.  I'm feeling great, no symptoms, all blood work, tumor markers normal.  My onc orders a routine scan and we find a recurrence to the internal mammary nodes (regional nodes under sternum).  The consensus is those cells had escaped the original tumor by the time of diagnosis but were too few to be detected by the breast MRI.  TNBC is more likely to travel through the lymphatic and vascular system than other types of bc.  Also, did you know that not all tumors drain to the sentinel node(s)?  Most do - about 96%.  I happened to be one of the 4% whose tumors drained to other nodes.

I hope my story doesn't scare you or cause you more anxiety.  I just feel that you should know all the facts to help you make the best decision for you.  Please reach out to Steve and talk to him.  He's helped so many of us.

PS:  Are you taking anything for the anxiety?  Many oncs will prescribe something like Ativan to help during this stressful time.  

Hugs,
Donna


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 1154
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2017 at 9:11am
I miss Connie :( I should add, even though I've watched Steve help countless people here all these years, I was shy to reach out to him when I had my recurrence last year. I did contact Donna and Mainy via private message and they both encouraged me to reach out to him. So once again, these women and this community changed a life - mine. If you're lurking out there folks, you are not alone! And Elsa, we are here for you No matter what you decide is right for you.
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
Back to Top
ElsaHope View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 13 2017
Location: Usa
Status: Offline
Points: 12
Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2017 at 1:23pm
I am greatful for the conversation here with you, creates question for my oncologist that I am going to see again. I have seen 4 different oncologist here in Oregon, and all seam to follow the guidelines of over 1cm they have to recommend chemo. The rest is up to me, and believe me I have been asking questions at my visits with them which for some it seams it annoys them especially when I ask about nutrition or what are my other options. I got 4 second opinions but they seam with same information that there is still not much known about Triple Negative so they give us what they got and in my case because I am young ACT is what they all liked to suggest, Carboplatin was in conversation but they said that it gives great neuropathy and they worry that might not be good for me. But I can choose that way if I want to,... So it seams it's basically up to me to choose and research as you can I am doing and reading and the more I am "lurking, reading others stories" on here and breast cancer.org the more I see that just like Mainy said it could be nine different people and it will still not be same as me. I am feeling discouraged.
I see soooo many who did everything in their stage 1 setting throwing the sink at it, and then it still comes back, doesn't that say something about Chemo having NO effect on this beast TN?? It even makes me really question if chemo is actually responsible for these reaccursnce that happen in distant organs by mutating things, this is my question number one for my next visit with oncologist after Holidays, I have actually asked asked that to one and he said, no but we don't know enough urgh.
Here are my current thoughts, I have good mental and physical health, and if I do chemo bases on what I am reading that will be severely disturbed. I do not want to become the next American depended on anxiety and Anti depression medication and seams like that also in line for most after they complete chemo. I am not rich and do not have best insurance to travel around for best oncologist who is still going to follow guidelines or to deal with all the side effects that chemo seams to cause long term like heart problems that were mentioned, Nurapathy etc. And if it comes back anyway, wouldn't it make more sense to researve chemo option for then. And last inside I just can not get over giving up health for just in case, and "we don't knows" and 8-10% when honestly it seams again from lurking and reading that if its meant to come back it does anyway no matter what one does. My heart is so broken right now. I feel as if I've become a fish that keeps beating it's live tail on shore. I guess I have to come to terms with we all have to pass on one day anyway and who is to say we are all going to be 90 plus when we do. I mean just two days ago 6 people died in a train ride. I guess I just am not okay with making myself sick by my own signature to except poison. if it happens then it will not be by me but what life had in store for me.
I am in Oregon by the way.
Thank you again for reading my all over the places worries am I so sorry for all of us especially who have lost their life to cancer, any cancer.
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2017 at 9:29pm
Elsa,

I hope you know that we will stand beside you no matter what path you choose.  Please continue to post and share your thoughts.  This forum was my sanity.  I don't think I would have made it if not for the wonderful women (and men) in this group.  They understood like no one else could and were so calm and patient when I asked continuous questions.  

Hugs,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 1154
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2017 at 1:36am
The majority of women that have come thru here in the last 9 years - 100s or 1000s or them, survived. This is far from a death sentence. Very few had serious complications from treatment, or lasting effects from the chemo that saved them. With chemo recurrence is not common either. We have had many, many trials on our typical treatment plan that have proven scientifically that the treatment works, it's saved 100,000s of lives. Please hear everyone when they tell you that you are in the absolute worst part of treatment. this time when you have to make decisions is fraught with anxiety. The thought Of DOing chemo is petrifying! This IS the worst time for you. If you do chemo the reality is not anywhere near as bad as the anticipation. And its all over quite quickly - we Are lucky that way At least, our treatment plans are quick compared to other cancers.
In hindsight it's just a blip in my life, even doing it twice was just a blip. I've taken no medication post treatment either time. No anti anxiety or anti depressants - only vitamins.
I'll try one more time to ask you to please talk to Steve. Hes personally known and helped many many cancer patients, especially BRCA positive ones. His whole family has had to deal with it. If anyone can give you peace of mind during this process it's him. And he will not ever tell you what you should do! At least give it some thought...
Whatever your decision going forward, I hope you can accept it and banish the thoughts of it being a "death sentence" , not only because it's actually not, but because it's no way to live. You aren't stage 4, you caught this in time to cure it. This will all be behind you - you are done if you refuse treatment, by summer of you choose to accept the treatment - either way, this will not take up that much more of your life
keep bringing your thoughts and feelings here, it really does help. Most people in our lives cannot grasp how huge and overwhelming this is. It was a huge blessing to have this community to come to, to say out loud my thoughts and feelings and fears. Without judgement, or ugh - pity. This place is _always_ a safe place to land.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
Back to Top
Lucky22 View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 09 2017
Location: Philadelphia
Status: Offline
Points: 22
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lucky22 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2017 at 8:16am
Elsa - I echo the sentiment that you are in the worst time - all caught up in your head. You have yourself having a recurrence before any treatment. The fact is the majority of women who receive treatment never have a recurrence.
Your doctors may seem frustrated but that is because they know the best course of action for you is the combo of chemo, surgery and maybe rads.
Please remember to that people tend to talk more about negative experiences than positive. Women go through treatment with some issues then go on and live life - they are usually not on forums unless they’re the lovely ones who like calming down newbies!
I just finished 5 months of chemo. Yes, it was hard, but I truly feel good. I’m so excited to move on. I have a plan in place to lose the 5 pounds I gained and vacations to plan. Moving on to rads with a great attitude.

I truly wish you the best. You’ve got the information and many medical opinions and now you need to decide. I know it’s hard - do what you feel is best for you, your family and your future.
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2017 at 9:09am
ElsaHope...I'm going to be blunt about one thing. You mention that you might hold chemo out in case of a recurrence. That's not how recurrences work and could prove very dangerous for your health.

The reason I originally mentioned 'kitchen sink' is because when dealing with Tneg it's best to give it your best shot the first round because fighting through a recurrence is dicey.

Btw, since you're in Oregon, my original Onc has moved there. He's in Portland and I'm sure you can google to find him. His name is Robert Raisch. He is kind & thoughtful and willing to answer questions as well as being top notch.

Please remember that just as your doctors are leaving things up to you now, it is also your option to opt out of a particular treatment at any time. Not generally advisable, as it's best to stick with it, but you do have that extra control.

Also, most clinics have a social worker attached to the office. It's worthwhile to spend some time with the social worker because they can line you up with various kinds of financial help...everything from someone to help drive you to appointments, to cleaning your house, figuring out billing & financial help.

I googled Dr. Raisch for you
http://www.legacyhealth.org/providers/robert-raish.aspx

Edited by mainsailset - Dec 22 2017 at 9:12am
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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2017 at 12:05pm
Elsa,

Chemo definitely works!  Seven years ago when I was diagnosed with my recurrence to the internal mammary nodes, surgery was not an option to remove them.  These nodes are under the sternum in your chest and require major surgery, which was not an option as we needed to start chemo right away.  So my only treatment choices were chemo and radiation.  I wasn't holding out much hope that it would work without surgery, but it did.  I had a scan after 2 cycles and was No Evidence of Disease.  We continued 2 more rounds of treatment and then on to aggressive radiation to mop up any remaining cells that may be lingering around. 

When Mainy talks about throwing the kitchen sink at it, this is exactly what my onc suggested.  She found a clinical trial, Carboplatin, Gemzar and Iniparib, where I received treatment twice a week for two weeks then, off a week.  They then recommended IMRT radiation, 40 treatments to hit all possible regional nodes.  I thank this onc every day for saving my life.  She had a plan, an aggressive one, and because of it, I'm still here 7 years later with no evidence of disease.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2017 at 1:54pm
I think of Donna's story often whenever I hear questions about treatment of small tumors. The assumption that a smaller tumor can create less danger than a bigger tumor and hence a lighter choice of treatments worries me. Donna's case was complicated but I always think we should look at every case as complicated!

I'm having a hard time understanding oncs that would not encourage you to have radiation because of a BRCA gene, but then they're the doctors and all I have is an opinion.

Last thought, radiation therapy has made great strides since I had mine. There are now studies out that have investigated radiation of just the area where the cancer cells were as well as studies that are not the standard 6 weeks. If having less radiation is something you would be interested in perhaps your doctors could give you their opinion on the newer strategies.

Please please please understand that your first round of fighting Tneg is your strongest.

Edited by mainsailset - Dec 22 2017 at 2:05pm
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
Back to Top
susanb View Drop Down
Senior Member
Senior Member


Joined: Mar 02 2008
Location: United States
Status: Offline
Points: 110
Post Options Post Options   Thanks (0) Thanks(0)   Quote susanb Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2017 at 6:19pm
I had a small stage 1 tumor dx in 2006. I threw the kitchen sink at it because this disease killed both my mother and her mother, both at very young ages. I am most likely BRCA positive (I'm an Ashkenazi Jew) but I've never had the testing as that I followed the treatment protocols for it at the time. Bilateral mastectomy and AC chemo. Chemo was rough and I didn't cope well but I would do it again if I had to. Because it worked. 12 years out this spring. 

Edited by susanb - Dec 23 2017 at 6:20pm
Dx June 06 stage 1 at age 46, no nodes, clean margins, Ki-67 at 54, Bilateral Mastectomy, 4 rounds AC, complete hysterectomy Aug O7. Mother and Grandmother both died of breast cancer dx in their 30's.
Back to Top
atlhoosier View Drop Down
Groupie
Groupie
Avatar

Joined: Feb 18 2014
Status: Offline
Points: 46
Post Options Post Options   Thanks (0) Thanks(0)   Quote atlhoosier Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2017 at 2:35am
HI Carrie, are you still on treatment, even though you are NEAD?  I am now stage 4, going through treatment, and striving for NEAD!  My hope is to come off the chemo when that happens.  How did your doctor determine that you are NEAD?  Is it completely gone, or just stable?  I've been back on treatment since the end of June, and the tumor in my lung has shrunk by 30% but at the last scan only showed stable (no shrinking).  What treatment were you most recently on?
DX Jan 2014, 37yo
TNBC, Stage 2A, 4 tumors, BMX Aug 2014, clear margins

2017 - Mets to lung (single nodule) & sacrum
1st line(current): clinical study w/ taxol & reparixin (may be placebo)
Back to Top
HopefulToday View Drop Down
Newbie
Newbie


Joined: Oct 30 2017
Location: Seattle
Status: Offline
Points: 35
Post Options Post Options   Thanks (2) Thanks(2)   Quote HopefulToday Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2017 at 6:34pm
I was diagnosed with TNBC in November of 2016 had Lumpectomy in February of 2017. Didn't do Chemo. Within 3 months it was back and in lymph glads under my armpit. I did metronomic Chemo with Dr Ben Chue of Lifespring Cancer Treatment here in Seattle. It was NOT so bad - it was 12 weeks of Carboplatin and Taxel. I also did cold cap therapy and did not loose all my hair. (Only works with certain chemo from what I understand) TNBC is very aggressive and even the slightest cancer left in your body could spread it. Please consider chemo. I also recommend Dr Ben Chue, he has 30 years experience dealing with this. Good luck! Oh and I was stage 2A. Seem to be doing better this time after the chemo. 



Edited by HopefulToday - Dec 30 2017 at 6:55pm
Back to Top
ElsaHope View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 13 2017
Location: Usa
Status: Offline
Points: 12
Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Jan 01 2018 at 2:57pm
Metronomic Chemo? Were you a stage 2 when you got first diagnosed in November? I looked him up, Seattle is close enough to drive up for conversation, thank you for sharing. The time has come to make decisions for me and I am still overwhelmed and afraid. It's hard to accept that I need to get sick in order to not be sick when I feel perfectly healthy.
Back to Top
HopefulToday View Drop Down
Newbie
Newbie


Joined: Oct 30 2017
Location: Seattle
Status: Offline
Points: 35
Post Options Post Options   Thanks (0) Thanks(0)   Quote HopefulToday Quote  Post ReplyReply Direct Link To This Post Posted: Jan 01 2018 at 4:55pm
Elsa, 

I'm certainly not a doctor SO please ask questions about  chemo and radiation and the order they should be done. What happens if you do radiation first. From what I understand it is very difficult to go back and do chemo after radiation.   

I believe in my body, the TNBC spread REALLY quickly. I was diagnosed at stage 2A but that's just a label. I found that after having cancers removed from my breast and lymph (after it had spread) the sizes were not exactly what they were on the scans or MRIs. 

I have never felt sick because of the cancer but I assure you, I have had breast cancer and it took me 3 months to come to terms. I don't know if in those 3 months it spread to my lymph glands but it did and I have now had 20 removed from under my arm -trying to stay ahead of it. I have also had a double mastectomy.  

Metronomic Chemo is smaller doses of the chemo but with no break in-between. I had it for 12 weeks straight. Part of the theory is that it doesn't give the cancer a chance to become resistant to the chemo. 

I would think anyone who has cancer is afraid but please consider talking to Dr Chue or another Dr about chemo. I didn't believe it when I was diagnosed either but I do now. As much as I hate the idea of the chemo I do believe it may have stopped this from spreading more in my body. Honestly, I saw 6 oncologists before I went with Dr Chue - I kept trying to find someone who would tell me I didn't need chemo. I went with him because he offered me a type of chemo I believed in after researching. We are all going to deal with cancer in our own way but I believe it's very important not to waste precious time, to do research, as well as, be your own advocate. 

I never felt sick from the chemo, it just made me kinda light headed and a little dizzy. Dr Chue was with me every step of the way offering medications to counter the side effects. He will listen to your concerns and hold your hand through the process should you decide. 

BTW, I did Carboplatin and did not have any neuropathy. I'm sure everyone reacts differently and there are no guarantees but I was monitored well. 








Edited by HopefulToday - Jan 01 2018 at 10:52pm
Back to Top
 Post Reply Post Reply Page  <1234 5>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.