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Anyone refuse chemo

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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2018 at 7:40pm
chemo is very doable... 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote cmp Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2018 at 7:06pm
Penny,

You were advised to do chemo Stage 1A grade 2? Did your oncologist go by the national guidelines:

or was he/she aware of this report:
https://www.mdedge.com/familypracticenews/article/97068/oncology/stage-trumps-biology-most-small-triple-negative-breast

Any other early stage T1a or b node negative, clear margin patients on this forum who refused treatment (rads and chemo)? Please share your experiences.


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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2018 at 8:14pm
Yes, they were aware of the NCCN guidelines and said since my tumor size was .6cm I fit into the "chemo" category.  .5 and below it would have been "considered" or optional.   .6 cm put me into the next bucket!  I wanted to make sure I had the most aggressive treatment possible and the MO and second opinion said chemo!

Hope that helps, Penny
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2018 at 12:48am
cmp, my oncologist gave me the option of "treatment with a somewhat less toxic, shorter regimen," that is described in the second article you provide a link for. But it was still chemotherapy. I chose the more standard regimen because it had a slightly higher chance of success. I told my oncologist: "I want all the percentage points I can get." She said: "It's up to you, but that's what I would do if I were you." I was Stage 1 with a 1cm tumor. My sister had a 6mm tumor. At that smaller size, the lighter regimen had the same chances as the heavier one, so the lighter regimen was the only one given to her. We're both doing well 7-8 years down the road.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2018 at 4:35am
Thank you for telling us your experience, Meadow.  It's lifted my spirits somewhat as I have been a bit depressed of late and feeling some sort of undefined anger.

I don't beat myself up if I am a bit grumpy and low in spirits BTW because I reckon I have earned the right to feel like that.

I had the whole kybosh, op, chemio, radio as advised and I was in no position to resist.  So no decision needed on my part, just as well!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote VEA2018 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2018 at 2:15pm
Penny thank you for your post. My mom is 74 years old and she had .6 cm tumor on her left breast I ask the oncologist if chemo was avoidable he recommended a clinical trial instead less toxic due to my mom age. He suggested surgery than a clinical trial but I also mention radiation he did not suggest at all. I was curious what type of chemo did you had? and how many treatments?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cmp Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2018 at 9:16pm
VEA2018,

Can I ask what clinical trial was offered to your mother (what medication/who offers the trial)? It is interesting to me that he would not suggest radiation but advise the chemotherapy. I wonder why. 
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2018 at 10:31pm
TC was the protocol.  4 infusions, 3 weeks apart with RADS to follow.  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Aug 15 2018 at 4:08pm
I had a 5 cm, grade 2/3b tumor.  I knew there was no question about chemo and I had 4 rounds of dose dense AC and 12 weekly Taxol with Carboplatin every third infusion.  I had read so much and heard horror stories.  Remarkably, I had few issues other than fatigue.  I followed the doctor's orders about taking the meds to lessen side effects and I think that was a key for me.

When I had my lumpectomy the entire mass was gone!  I did have some DCIS and lymph node involvement so I then had a mastectomy.  An auxillary lymph node disection was done with the lumpectomy.

I sure would want my oncologist to use their biggest guns.  TNBC is such an aggressive cancer I want every possible chance to keep from a reoccurance!


Ann
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Post Options Post Options   Thanks (0) Thanks(0)   Quote VEA2018 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2018 at 3:43pm
CMP thank you for your post. I have to retreat my post on aug. 14. I was wrong what the oncologist suggested. For my mom first is surgery then chemo treatment, that will depend on how many lymph nodes are removed including with a clinical trial, call Adjuvant PVX-410 Vaccine and Durvalumab in stage 2/3 triple negative breast cancer. I asked the dr. is this clinical trial is for stage 2/3 triple negative breast cancer he mentions it does not make any difference this will help her for a reoccurrence. The location Lee Moffitt Cancer Center and research institute in Tampa Florida. I asked about radiation he said if no lymph nodes are involved then radiation only.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote MJK Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2018 at 4:04pm
First to thank you all for your sharing and courage. I was diagnosed in Feb/18, Stage 3c with a few nodes in question.Brca negative at 64yrs.No history in my family. Surprised but figuring the cancer odds ,not shocked. So many,too many.This sight has calmed my fears giving me great info on the so many questions,large and small. Like having a multitude of second opinions on treatments,side effects and insights. Helping me decide on dbl masectomy,no reconstruction,treatment options and managing the minor side effects. I was lucky to have 12 taxol and ned. My Dr held off on the Ac to monitor my heart,so went forward with taxol weekly.I then asked for CT to see how things were going.No tumor and benign appearance in 2 questionable nodes. Surgery:Great response!! Completely clear pathology.Just one week out of my surgery,drains out and healing. Much easier than I thought.Will have radiation next ,in case of any cell floaters.Then we'll see what we have. That has been my journey aided by this giving from all of you. To all of you ,much appreciation and love. Forever on!! MJK
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunny70s Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2018 at 4:37pm
Hi, I'm new. My details hopefully in profile. I was supposed to start chemo last week. Since I already have chronic fatigue/chemical sensitivity/immune issues was not looking forward to it and got myself riled up reading about side-effects. Then had a bunch of real life issues and little sleep and had one of my twice a year chest pain episodes.  I'd had a port in for a week which wasn't bothering me - but I think it magnified the chest pain into my left arm and jaw two days before chemo.

So you know they sent me to emergency room which diagnosed stress. I explained all to oncologist and she's seeing me in 10 weeks. Just hope they start it soon cause don't want to delay too long. 

As a compulsive and curious researcher looking into viral (especially herpes) causes - since I l already had a couple pre-existing viral conditions. Not as bad as HIV, and I've read people with HIV do survive chemo and breast cancer. 

So trying to relax and keep it intellectual and NOT emotional! Once weather cools down (long walk from metro) I'm going to the local 2x a month in person support group. The first time was real helpful.  I know online BBS aren't always too responsive, but one is happy to find one person with similar interests or situation!  Thanks for listening.


Edited by Sunny70s - Aug 28 2018 at 2:26pm
DX/7/11/18 IDC, Right, 3.3 cm, Stage IIb, Grade 3, 18 nodes, Er-/PR-/HER2- Had surgery; two of 8 chemo sessions done. Undecided on radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunny70s Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2018 at 4:54pm
Actually, I do have ONE big question.  Oncologist wants to start me on highest dose of Doxorubicin, Cyclophosphamide & Paclitaxel, followed by Pegfilgrastim.

Considering I have various bad reactions - a couple being somewhat nasty - to even flu shots, as I told her, I'd sure like it if she did a 75% dose first time around. I'm going to just ask her, not try to convince her which would be too stressful.  But if anyone knows any soft approach I can use that might convince her, feel free to share.

But I am prepared to find out HOW bad it is from first (of 4 biweekly) treatments and go from there. I do NOT want to be one of those people who can't handle it at all and hearing that a number of women have had it much less worse than expected does help.

Update: a little research and I found out that phenol was used in the most recent vaccine and probably the last one I had a problem with. And phenol is definitely used in one of chemo drugs and possibly in others. So now I know why chemo exhausts people! People with Chronic Fatigue Syndrome/chemical sensitivites obviously more susceptible. But at least now that I know the issue, it makes it easier to deal with. Nothing mysterious! 


Edited by Sunny70s - Aug 28 2018 at 2:29pm
DX/7/11/18 IDC, Right, 3.3 cm, Stage IIb, Grade 3, 18 nodes, Er-/PR-/HER2- Had surgery; two of 8 chemo sessions done. Undecided on radiation.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2018 at 8:26pm
Hello,

I had a rough reaction to the "T" in my treatment and they pre-loaded me on my next three rounds with steroids via IV before the T bag was hung, then I had the easier bag.  Two infusion bags per session.  They also had to slow the drip down by 50% so my infusion days were five hours.  Might be a suggestion you should ask your MO about prior to the infusion and see if that helps.  That is what my MO decided for me and my next three infusions were problem free.  See what your doctor thinks about that option.  Hope that helps.

Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunny70s Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2018 at 2:28pm
Thanks. Will ask the oncologist about the various options in reacting to what I think will be an unpleasant reaction to phenol or other chemical components.
DX/7/11/18 IDC, Right, 3.3 cm, Stage IIb, Grade 3, 18 nodes, Er-/PR-/HER2- Had surgery; two of 8 chemo sessions done. Undecided on radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2018 at 6:20pm
Hi, I was wondering how you are doing and what you decided to do?  I was just diagnosed and am struggling with the thought of doing chemo.   Any information would be appreciated.  Thank you 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2018 at 6:26pm
Hi, I was wondering how your mom is doing today?  I see she was diagnosed in 2011.  I just did lumpectomy and am not wanting to do chemo.   Any other things your mom that I can try?   Please let me know.  I changed my diet and am taking a lot of supplements trying to build my immune system.    
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