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sophie View Drop Down
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    Posted: May 25 2019 at 3:58pm
Deal all,

This is Sophie. I finally found this forum to see if my life can be saved via this TNBC journey..

i am 49 yrs old and right after celebrating my birthday, i got diagnosed of cancer end of Feb via annual mammogram with biopsy of 1.3cm, lymphovacular invasive, grade 3, ER+40% with PR and HER2 negative... i switched to a local hospital to get surgery done right away instead of waiting in Upenn hospital... What was funny is right after surgery the final report said i am no longer has any ER+ but in triple negative, with no nodes involved...i did the genetic testing and said no mutation for BRCA1&2, but seeing variations in BRCA2 with no details... 

i am doing chemo right now going for the 4th AC next week.. .and then followed by 4 round of T... 

i am kind of freak out as each time i am taking with my MO, asking him about if this chemo works for me killing any cancer cells or not if any out there or what do i have, ER+ or triple negative... he will say" dont know, time call tell..."

i really hate it that being treated as a number not as a human... he didn't offer anything after 8 ACT as he said you dont have any tumor on you so we dont know if chemo works or not.... I have read many conversations in this Forum and love all of your sisters, you guys are strong and incredbile... what i have learnt so far is:

1) Xeloda can be used to treat non-basal like TNBC but has to do chemo first and then surgery.... so my case, am i still able to ask for using Xeloda to my oncologist?
2) can i ask to add Carboplatin into my chemo, although i saw which is more benefit for BRCA1 mutation?
3) what about Avastin, i saw here or there being mentioned as part of immunotherapy, is it a pill to take after chemo?
4) since i have lymphovacular invasive, shall i ask for some proton therapy on my regional nodes? currently, is not offered to me....
5) shall i go for genetic testing covering more 30 cancer mutations to see what feed cancer to grow?
6) I was offered 4 T (Taxol) every 2 weeks, but seeing some sisters having 12 weeks small dose... why is different?
7) what are the difference between Taxol and Taxotere ? one is better to have less damage to hands and feet?
8)shall i go to MD Anderson to see if there is any target medicine i can use? i just felt hopeless that going through a lot 8 round of ACT and at the end of the treatment, oncology will say "sorry, dont know if this chemo works or not, let time to tell..., what the heck?""

i know effective treat is key as TNBC is not easy to be messed around.... my daughter is only 13, i cant handle it to think she will no longer has me soon if cancer coming back... i wanted to treat it aggressively this round, really appreciated if i can get some insight from you ....



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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: May 26 2019 at 10:56am
Hi, Sophie!!
First, you are doing a great job of advocating for yourself. 
Everyone here will tell you to get a second opinion. If you need help with that, we can help you get to know Steve from Sage Patient Advocates
It is standard of care to do taxol in 12 weekly rounds. There are reasons to do it differently, but that is standard and research supported. 

You are within your rights as a patient to ask for carboplatin, which may be added to the standard of care soon.
Since you have lymphovascular invasion, you should ask for a referral to a radiation oncologist.

Honestly, what works and what doesn't work is a crapshoot. You are in a good place without any nodal involvement, although who knows? 
TNBC is a catch-all diagnosis, every case is different and they don't know why. 

Your feeling of being a number is no good!! I think you might have a better experience with a different oncologist! Please consider a second opinion!! 🙏🙏🙏
Leah
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: May 26 2019 at 1:06pm
Leah,

Thank you so much for your response and I will definitely wanted to seek for 2nd opinion. Can you help me get in touch with Steve?

Also, regarding carpoplatin, is it benefit only BrCA1 mutation?

Happy memorial holiday and appreciate your support.

With love 

Sophie 
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2019 at 1:19pm
Welcome Sophie, so sorry you're going thru this. You are contemplating the end of your treatment plan and its freaking you out. We ALL experienced this - it feels so dangerous to just stop actively attacking the cancer after months of focus on it! Its one of the hardest times. 
I've had TNBC twice - know that a recurrence like mine is exceedingly rare, it just almost NEVER happens, so don't let that scare you. Because of it I've been around here a long time and had two different treatment plans that both worked. My first time was almost just like you: 45 years old, my youngest was 15, 2.2cm with 1 lymph node involved. Lumpectomy and full axilla node removal first - wide clean margins. 4 AC then 4 taxol - I did fine on the 4 taxol every two weeks, it is the SAME as every week for twelve, which started later because of some folks neuropathy. If you tolerate it I'd say go for it - 7 weeks instead of twelve is great. If you suffer too much neuropathy switch to the lower dose weekly. BUT - if you decide on Carboplatin its usually used with taxol - taxol weekly x 12, with Carb every 3rd week x4. That was ALL i did the second time, the Carb and Taxol, before mastectomy, and I got a pathological complete response (started with about a 2cm tumor.) I had 36 radiation treatments the first time, whole breast and axilla. If I hadn't had a PCR the second time I was going to do 6 months of Xeloda. 
So you are doing the Goldstar preferred treatment for TNBC already. YES you should have the full genetic testing done! A friend of mine tested positive for the BARD mutation, so she opted for a clinical trial of AC, Taxol, Carb and immunotherapy drug Keytruda, folowed by mastectomy and hysterectomy - far more than she would've done without the mutation. 
Taxol has proven more effective than taxotere with TNBC.
Avastin proved not to be effective on TNBC outside the breast and is no longer used in standard care. 
A second opinion is always a good idea!!! And MD Anderson is awesome. Thats where I went the second time. I only got in because Steve made it happen 💝 you can message him here at sagepatientadvocate He is our guardian angel. He discovered he carries a BRCA mutation when his daughter was diagnosed with TNBC at about 30 yo. 
If you are having high anxiety, blue sad moods or insomnia talk to your doctor. The majority of us took medication for some or all of it - I did the occasional Xanax, Lunesta and went on 4-6 months of anti depressants both times. Take care of you! Don't suffer needlessly if medication can help. 
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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2019 at 1:46pm
Kelly, thank you so much for your kind word and support... I am not sure how to message Steve yet as not familiar with the forum yet.

Regarding genetic testing , I am not sure if my current oncology will give me the order for further testing ... he seems not care of my case as he said you are stage 1, you think too much... shall I ask for bard mutation testing only ? 

I am so happy for you of achieving cancer free, I am not sure how I live from now on thinking of it may grow at somewhere in my body and I canít do anything about ... it is scary and freak me out ... so you second round of cancer is still in breast? I have lymphovascular LVI so I am afraid of them spreading out although has no nodes is active ...

Since I had surgery first then chemo, I am not sure if my currently oncologist will give me xeloda pill or even agree to have cab added into T, he is very conservative and I had to fight to get ACt as his original plan was 4round of TC... 

I am stressed daily as I donít know how to find out if chemo works for me as I did the surgery first ... 




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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2019 at 3:12pm
Hi Sophie, you can message Steve by going to the top of this page and in the grouping on the left you'll see 0 New Messages. Click on that and then type in the SagePatientAdvocates that Kelly gave you.

We're so lucky to have members like Leah and Kelly here that have great insight into treatment and the fears that Tneg delivers to us. They both offered great advice to you and they're right, you're doing a great job advocating for yourself.

I too had an oncologist who didn't seem to care if I got BRCA testing or other mutations. She was wrong.

And do consider asking for meds to address the anxiety and any sleep issues you may have. It's a part of the battle so that you can focus and don't get exhausted. Also, do have your vitamin D tested. Most of us register low and it's a good thing to get those levels up.
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Leahstuffle Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2019 at 5:45pm
You should be able to get some of the genetic testing covered by your insurance. However, a lot of it is reserved for metastatic patients. It's extremely costly if you go forward with it. To the tune of $6000. 

I know many women who have had carboplatin added to their therapy without a BRCA mutation.

I agree about the vitamin D!! Get it checked!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2019 at 11:12pm
My vitamin D has been low for a few years ...regarding regiment Taxol , has anyone used nab-paclitaxel (Abraxane)? I was told Abraxane has less side effect, no negative impact in hands and feet, I am seeking feedback and advice to see if good to use TNBC?

Many thanks 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2019 at 8:19am
Hi Sophie,

You've received some excellent advice.  I'm glad you've gotten connected with Steve.  He's an amazing person and has helped many of us.

If they won't offer genetic testing, you can get it easily through another source for only $249.

https://www.color.com/learn/can-cancer-be-inherited


Regarding Carboplatin, I am BRCA negative but achieved remission on Carboplatin, Gemzar & Iniparib. 

Getting a second opinion is a great idea, especially from an NCCN cancer center.  A second opinion can also look at your pathology and retest the tumor.

Most of us diagnosed with bc had low levels of Vitamin D.  Have you had your levels checked?  If you take Vitamin D, you want to take D3, not D2.


Donna



Edited by 123Donna - May 28 2019 at 8:21am
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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2019 at 11:41am
Nothing has proven as effective statistically as AC & Taxol, why would you choose a less effective drug instead of Taxol? the AC is WAY harder than the Taxol for the majority of people. And adding Carboplatin is no small thing. I got sick as a dog, hospitalized for sickness! I got super anemic and barely had any platelets at the end. I can't imagine doing that after AC! so theres reasons to carefully consider these additions. 
The absolute best thing you can do is get a second opinion appointment with a really good dr that specializes in aggressive breast cancers at a really good NCCN or NCI rated hospital. Get the full workup, have your pathology sent there to be re-read, meet with a surgeon, medical oncologist, radiation oncologist and meet with their genetic counselor - get a FULL second opinion across the board. We'll help you craft a cohesive list of questions for each of them, and you can go thru everything with them. It will help I guarantee it! Especially considering you currently have a crap doctor (sorry...lets call it what it is tho!) Even if Dr. Crap tells you the accurate thing at this point, the bad and wrong advice hes given you already will prevent you from ever trusting him, right? You need a good dr for the future anyway, you'll see them every 3 months for 2 years, then twice a year til 5 years, then once a year forever - you need to trust and hopefully like them! 
One more thing about meds and anxiety - I broke down and tried cannabis this last time. it was the most helpful thing for many issues I had! Lots of us here feel that way about it. Edibles are my fave, but smoking works as well. Anxiety, stomach sick, muscle spasms, anxiety, insomnia, pain, lack of appetite and mood elevator - folks report help in all those areas. Without the risk of horrible side effects, constipation and addiction issues that traditional medicine has. Definitely worth a try. 

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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2019 at 4:56pm
I wanted to provide a status update of my case, which is not promising and kind of frustrated .

I reached out to my oncologist today asked him if he can do following, he basically said No to all of them ... what I have suggested are:

1) adding carboplatin to my next regiment T , he said no as carbo is for beca1;
2) doing xeloda pill after chemo... he said No as he believes side effects is strong and he doesnít give that medicine to anyone;
3) he is not a fan of copper depletion as he said no strong study shows it works...
4) I asked to do more genetic testing to see if any target therapy I can use ? He said at your stage nothing is available...

So here I am back to square 1, all of my research your input makes no sense to my current oncology and per he say, after 8ACT, nothing is available to me... just wait and see...

Sophie 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2019 at 7:55pm
It's time to find a new oncologist.  Sorry, but if you are not comfortable with a doctor and don't feel like they are part of your team, then it's time to find a good one.  I've experienced some amazing doctors and a few with horrible bedside manners.  There are too many good ones to suffer a difficult one. You have to advocate for yourself.  Otherwise, your onc won't.

Some members have utilized testing facilities to get more personalized treatment.  Hopefully they will chime in on this thread.  I remember this was one of them:

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2019 at 1:56am
What Donna said, you need a new oncologist. If you get a second opinion from a doctor at a different facility, and they can get your insurance to cover it, you should be able to get it administered by a local facility and doctor. This is what I did, with MD Anderson. he prescribed treatment, my local doctor and facility got it approved based on his opinion, and I received treatment here. You are likely to run into your insurance not wanting to pay for it because its not "standard care", but with a good oncologist they will get creative to get it approved. To get the  extensive genetic testing, we carefully reported my genetic history. I have no females on either side of the family to know if it would be recurrent in my family tree. If there are a lot of women in your tree - great grandmas, grandmas aunts cousins, nieces, etc that have had breast or ovarian cancer, that gets you approved. Did you have a genetic councelor? What about the brca2 you mentioned? And just doing the testing on your own, like Donna said, has gotten much more affordable.

There would need to be a reason to do the added things you want to do to get it covered. I had an bigger tumor than you and a lymph node involved the first time and ACT and radiation was what I had - what most women have. And it worked! Since then they came out with the study showing a PCR after chemo before surgery does have a greater positive outcome, which is when Xeloda and added Carboplatin post surgery when PCR isnt achieved became possible - insurance couldn't deny paying for it under those circumstances anymore. He is right about Xeloda having side effects - it does, I was relieved to not feel I needed it with my PCR. BUT - to say theyre bad enough that he NEVER uses it?? patently absurd. It was MD Andersons recommendation i take it if I had residual tumor. We've had quite a.few women here take it. Its chemo - some did better than others, but it wasn't dreadful for most. 

You need a quick appointment with a good doc before you start the Taxol to make Carboplatin a possibility I think. Once you 've finished the ACT I can 't see your insurance ever paying to add it on the end. 
The way you described your conversation with him makes my blood boil. You may meet with a really good doc, that will explain in detail the ins and outs of these added treatments and advise against them . Very possible. But what a good, detailed conversation with a brilliant dr should do is give you peace of mind, make you more ok with your current plan. And you need that very much to move forward. Current Dr Jacka$$ has gotta go. 
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!
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all,

this is sophie. I wanted to give you all an status update for my treatment. I was able to find a MO to add Carboplatin into my Taxol. since i have completed 4 AC, the coming up treatment plan is i will do my regular 1Taxol tomorrow Friday, and then switch MO to have weekly infusion for 9 times with Taxol and Carboplatin... the new MO told me that in Germany data already shown that Carboplatin improves the successful rate v regular ACT...

thank you all for this formu which allows me to know what new options other than standard treatment out there that can help me make the treatment more efficient. this new MO said that Taxol and Carboplatin weekly should not have many side effect as AC, so life should be relatively easy during the treatment.

he also agrees to do xeloda after chemo is over and explore to copper depletion... so sounds very promising... the side effect i am facing from AC is my tongue has white patch difficult to eat. any suggestions?
Sophie

 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2019 at 7:53pm
Sophie,

This is exciting news!  I'm so glad you found a MO who will give you the treatment you want.

Regarding your tongue, it's probably thrush.  Some people have their doctors prescribe Magic Mouthwash for mouth sores.  Mine had me rinse with a mixture of warm water, salt and baking soda.  If it's thrush, they can prescribe Nystatin (an anti-fungal) liquid.  Let your oncologist or nurse know about this symptom and they can get something to help with the symptoms.  Keep us posted on how you are doing.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2019 at 11:26pm
YAY Sopnie!!! Way to advocate for yourself! Most people do fine on Carboplatin, if he's doing it weekly it will probably be low dose.
I did high dose and I was the rare one that did not do well. I made it thru and on time, but it was quite the journey to figure out what meds and other stuff kept me going. If you have any issues please feel free to message me, I'd be happy to share the things I found that helped. 
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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 15 2019 at 6:16am

You guys are my rock!!!!

I did my 1st Taxol yesterday, no white blood patch was offered to me as the doctor said wanted to see how I react and if I truly need help to increase my white blood cell. Not sure this is good or not? 

Also, I further pushed ( in other words, I discussed again the carboplatin with my current MO) who still refused of adding this regimen to my treatment and not interested to move Taxol into weekly small dose.

For my tongue, he issued the magic wash saying I have ulcers vs his nurse who thought I had thrush...I had both medicine now so I will be trying ulcers first...

The other side of story, I have been thinking of the recent post that how to define patients with the most benefit of using aggressive treatment v less treatment ... I am asking myself, shall I go with standard act which is good enough or I should have carboplatin added in?

I had the port installed last Tuesday ( after many bruises during AC treatment )... I am just thinking load here, weekly Infusion here poking port does this make the port skin hard to recover?

Honestly, after my conversation with my current Mo who is not flexible of changing regiment ( who refused to add more poison to my body said no solid evidence yet on carboplatin) makes me wondering are I doing the right thing in switching or am I not?

Comments, input?

Sophie 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 15 2019 at 9:55am
He didn't put in a port before AC?? He waited til you were down to only 4 treatments?? I'm baffled here. the skin over the port will do perfectly well. They could poke it every other day and it would be fine. Both my ports were rock stars, so easy to give blood for tests as well as for IV's. The only scars I have are from the cuts to insert and remove them. 
Even way back 11 years ago it was MY choice to do dose dense Taxol x 4 vs lower dose x 12. I did ice baths on hands and feet after my first dose dense Taxol caused some scary neuropathy. As in, my fingers were too numb to open the sliding glass door. What I didn't realize then was that any neuropathy from chemo can be PERMANENT, which is super scary. I was lucky the ice worked, both that time and the 12 doses I did the last time.  It was a true ice _bath_ that works tho, not ice packs. Fill a bedpan and a larger pan with ice, then 1/2 fill with water. Put on two pairs of rubber gloves (baggies on the feet) put one of those blue absorbent pads on your lap in case of drips. As soon as they open the bag of Taxol into your IV, plunge your hooves and paws into the water. When it starts to hurt, pull em out for a few minutes, then back in they go. Keep em as cold as you can stand. On the x4 the Taxol was less than 2 hours, x12 it was around an hour. It doesn't work for everyone, but certainly worth a try. 
Honestly Sophie - go with your gut on this. You've been at this a while, your gut is an experienced cancer cancer patients gut now. If you truly think the Carb isn't necessary then let it go. I did ACT after surgery the first time and I had a lymph node involved, and I was completely cured. As have been many, many 1000's of women. But if your gut says you need it? change MO's immediately. Raise hell! I cannot imagine if I'd come back to my local facility and MO after my trip to MD Anderson and the local Dr had said NO to the changed chemo plan we'd come up with there......... Nope. We found my cancer early this time purely because of my gut, and my brilliant surgical oncologists belief in listening to the "experienced cancer patient gut" (it wasn't palpable, they couldn't see anything on Mammo or ultrasound. Cigna said they wouldn't pay for a breast MRI with contrast, SO said, "Your gut still says it's there so we are doing the MRI, we'll sort the $$ out later." After biopsy confirmed what the MRI showed I got a letter from Cigna, "upon further review we will cover the MRI Unhappy). 
When you say he's not giving you the "white blood patch", do you mean the Neulasta shots? The first time I did Neulasta after the first 7 ACT, and skipped it on my final treatment. This time I didn't do it at all with the 12 Taxol and 4 Carb. Platelets were my issue this time, but that was from mostly the Carboplatin. No magic shot for platelets. So it's possible you can squeak thru without it. 
 You are the poster child of a thoughtful, informed, proactive cancer patient! You are doing an excellent job of it, you should be proud of yourself Heart
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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 19 2019 at 12:18pm
This is Sophie again, I wanted to share my experience on my first TAxol, which is scary and painful. I have been On beds for 3 days, body  in pain and feet no feeling. My current oncology said I had a strong reaction in taxol so he gave me 3 options:
1) doing small dose of Taxol weekly but since I am very sensitive, he is afraid of permanent damage;
2) doing Abraxane instead , but still has Neology risk 
3) doing taxetere instead weekly for 10 weeks. Doctor strongly recommended.

Previously I wanted to add carboplatin into my treatment . But now sounds impossible as my body couldnít even handle taxol no way to add carboplatin in damage Neology further ....

Shall I go with option 3  or what about carboplatin,or what is your recommendation?

Sophie 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 19 2019 at 1:38pm
I'm so sorry Sophie, that you've had side effects. This isn't uncommon with Taxol, that's why they mostly do smaller dose weekly x12. Since you wanted the Carboplatin added, why the hell did he do dose dense Taxol with you? Did you do the ice bath on hands and feet? I did the dose dense the first time and had the same thing, numb hands and feet, intense body aches, especially my bones. I started the ice bath the second dose and the neuropathy stopped. I did the ice bath all 12 Taxols this last time and had no neuropathy and less body aches. Since they've switched to 12x instead of 4 we see far less women here complaining of Taxol neuropathy. 
Does Abraxane have as strong a neuropathy side effect as Taxol? I don't know. Carboplatin has a lot less, I didn't do ice baths during high dose Carb 4x and had no neuropathy from it. I think Taxotere has all around less side effects. this would be a question for a really sharp MO that specializes in TNBC - it's a chemistry question, which chemo will give you the best percentage of positive outcome after A.C. (Didn't you already do AC?) While lowering your neuropathy risk? I'm not sure your local oncologist is well versed in TNBC? You need a second opinion stat. 
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!
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