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what are my options?

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Topic: what are my options?
Posted By: sophie
Subject: what are my options?
Date 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 ....






Replies:
Posted By: Leahstuffle
Date 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


Posted By: sophie
Date 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 


Posted By: Kellyless
Date 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!


Posted By: sophie
Date 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 can’t 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 don’t know how to find out if chemo works for me as I did the surgery first ... 






Posted By: mainsailset
Date 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


Posted By: Leahstuffle
Date 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!


Posted By: sophie
Date 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 


Posted By: 123Donna
Date 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" rel="nofollow - https://www.color.com/learn/can-cancer-be-inherited

https://www.color.com/learn/color-genes" rel="nofollow - https://www.color.com/learn/color-genes

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.

http://forum.tnbcfoundation.org/topic5338_post134052.html#134052" rel="nofollow - http://forum.tnbcfoundation.org/topic5338_post134052.html#134052

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



Posted By: Kellyless
Date 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!


Posted By: sophie
Date 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 doesn’t 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 



Posted By: 123Donna
Date 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:

https://www.nagourneycancerinstitute.com/" rel="nofollow - https://www.nagourneycancerinstitute.com/


-------------
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



Posted By: Kellyless
Date 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!


Posted By: sophie
Date Posted: Jun 13 2019 at 12:31pm
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

 


Posted By: 123Donna
Date 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



Posted By: Kellyless
Date 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!


Posted By: sophie
Date 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 


Posted By: Kellyless
Date 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!


Posted By: sophie
Date 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 couldn’t 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 


Posted By: Kellyless
Date 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!


Posted By: 123Donna
Date Posted: Jun 19 2019 at 9:00pm
I found this information:

ONS 2018: Peripheral Neuropathy Is More Severe With Paclitaxel Than With Docetaxel in Patients With Breast Cancer

PracticeUpdate Editorial Team

May 17, 2018—Washington, DC—Peripheral neuropathy could be more severe with paclitaxel than with docetaxel in patients with breast cancer.

This finding from a secondary data analysis was reported at the presented at the Oncology Nursing Society 43rd Annual Congress, from May 17 – 20.

Ya-Ning Chan, MS, of National Yang-Ming University, Taipei, Taiwan, explained that taxanes are among the most common cytotoxic drugs used in breast cancer treatment.

Peripheral neuropathy associated with taxanes may influence patients’ functional status and quality of life. Studies have focused, however, on peripheral neuropathy induced by paclitaxel, which is much more severe than that induced by docetaxel.

Data on comparison of the incidence and severity of peripheral neuropathy between the two drugs are limited.1

https://www.practiceupdate.com/content/ons-2018-peripheral-neuropathy-is-more-severe-with-paclitaxel-than-with-docetaxel-in-patients-with-breast-cancer/67597" rel="nofollow - https://www.practiceupdate.com/content/ons-2018-peripheral-neuropathy-is-more-severe-with-paclitaxel-than-with-docetaxel-in-patients-with-breast-cancer/67597


Abraxane Offers More Benefits Than Taxol When Given Before Surgery to Treat Early-Stage Disease

Abraxane (chemical name: albumin-bound or nab-paclitaxel) is a different form of paclitaxel than Taxol (chemical name: paclitaxel). Both medicines are taxanes, a powerful type of chemotherapy medicine that can stop cancer cells from repairing themselves and making new cells.

Taxol uses a solvent to dissolve its main ingredients so the medicine can enter the bloodstream. These solvents can make Taxol harder to tolerate while being given. Usually women take medicine before receiving Taxol to minimize any reactions to the solvents. Abraxane doesn’t use a solvent, which can make it easier to tolerate and also means that women don’t need to take medicine before receiving it.

https://www.breastcancer.org/research-news/abraxane-better-than-taxol-before-surgery" rel="nofollow - https://www.breastcancer.org/research-news/abraxane-better-than-taxol-before-surgery


Updates of Key Studies Differ on Relative Benefit of (Abraxane) Nab-Paclitaxel in Breast Cancer

TWO IMPORTANT STUDIES, both updates of earlier findings and presented at the 2017 San Antonio Breast Cancer Symposium, provided different findings as to the relative benefit of nanoparticle albumin-bound (nab)-paclitaxel (Abraxane), vs solvent-based paclitaxel in breast cancer. 

C. Kent Osborne, MD, FASCO

C. Kent Osborne, MD, FASCO

“The two studies were somewhat different in their results. In one, GeparSepto, nab-paclitaxel looked better. In the other, CALGB 40502, it did not. Where nab-paclitaxel fits into the current treatment armamentarium, I am not sure,” C. Kent Osborne, MD, FASCO, Director of the Dan L. Duncan Cancer Center at Baylor College of Medicine, Houston, told The ASCO Post

GeparSepto Neoadjuvant Trial 

THE PHASE III GeparSepto study was conducted at 69 cancer centers by the German Breast Group. The first survival analysis was presented in San Antonio by Andreas Schneeweiss, MD, of the University of Heidelberg in Germany.1 

GeparSepto evaluated neoadjuvant chemotherapy using weekly nab-paclitaxel vs solvent-based paclitaxel, followed by additional chemotherapy, in 1,204 high-risk early breast cancer patients (stages cT2–cT4a-d and cT1 with additional risk factors). The primary endpoint was achievement of a pathologic complete response. 

Andreas Schneeweiss, MD

Andreas Schneeweiss, MD

Not only were the rates of pathologic complete response higher with nab-paclitaxel, but this correlated with an improvement in disease-free survival, compared to standard paclitaxel, Dr. Schneeweiss reported. 

Patients were randomized to receive either 12 weekly cycles of solvent-based paclitaxel at 80 mg/m2, or 12 weekly cycles of nab-paclitaxel at 150 mg/m2, each followed by 4 cycles of epirubicin/cyclophosphamide (EC). In addition to chemotherapy, all patients received standard adjuvant therapy, and those with HER2-positive disease also received trastuzumab (Herceptin) plus pertuzumab (Perjeta). 

At a preplanned safety interim analysis, after 464 patients were enrolled, the dosage of nab-paclitaxel was reduced to 125 mg/ m2 to ameliorate the occurrence of neuropathy associated with the initial dosing. This resulted in a reduction in grade 3/4 neuropathy from 15% to 8%, Dr. Schneeweiss said. 

Response and Survival Data 

INVESTIGATORS PREVIOUSLY reported that the substitution of nab-paclitaxel for solvent-based paclitaxel significantly increased the rate of pathologic complete response from 29% to 38% (P < .001), but other outcomes had not been determined.

“It had not yet been shown whether this 9% improvement in pathologic complete response would translate into an improvement in survival,” Dr. Schneeweiss said. 

The analysis of disease-free survival occurred after 244 events, at a median follow-up of 49 months, at which time 141 events were noted with standard paclitaxel vs 103 with nab-paclitaxel. This resulted in an absolute improvement in disease-free survival of 6.4% at 3 years (hazard ratio


= 0.69, P = .0044; Table 1). 

Only 16 patients would need to be treated with nab-paclitaxel to prevent one disease-free survival event within 3 years—“a number that is important because, so far, 61% of the disease-free survival events in GeparSepto have been distant relapses,” he commented. 

Nab-paclitaxel’s effect was most “pronounced,” he said, in patients with triple-negative breast cancer, whose 3-year disease-free survival rate was 83.1% with nab-paclitaxel vs 73.4% with standard paclitaxel (HR = 0.66, P = .0694). The benefit was nearly as great for the hormone receptor–positive/HER2-negative subset, of whom 86.3% vs 78.6%, respectively (HR = 0.71, P = .0660), were disease-free at 3 years. 

“Probably due to the low number of events, those differences did not reach formal statistical significance; however, there’s a strong trend,” he observed. 

The greater improvement with nab-paclitaxel was true for all subgroups, and the interaction test for Ki67 was significant. Patients with either high or low baseline Ki67 derived benefit from nab-paclitaxel, he pointed out. 

The overall survival data are not mature, but at 4 years, 89.6% of the nab-paclitaxel arm and 87.0% of the standard paclitaxel arm were alive. 

“GeparSepto confirms the surrogate value of pathologic complete response for disease-free survival,” he said. Patients who achieved a pathologic complete response, regardless of whether they received nab-paclitaxel or solvent-based paclitaxel, had an improved and favorable disease-free and overall survival, but those who did not achieve a pathologic complete response had significantly better outcomes if they had received nab-paclitaxel. 

“This interesting finding, if it is real, argues for an effect of nab-paclitaxel on disease-free survival beyond its effect on improving pathologic complete responses,” Dr. Schneeweiss suggested. 

CALGB 40502/NCCTG N063H 

IN AN UPDATE of the CALGB 40502/NCCTG N063H trial, presented in San Antonio by Hope Rugo, MD, FASCO, Director of the Breast Oncology Clinical Trials Program at the University of California, San Francisco, previously untreated metastatic breast cancer patients fared better with standard paclitaxel than with nab-paclitaxel, though nab-paclitaxel was more effective in triple-negative disease.3 The study also confirmed the efficacy of a weekly taxane regimen. 

Hope Rugo, MD, FASCO

Hope Rugo, MD, FASCO

The phase III trial randomized 799 patients between 2008 and 2011 to receive paclitaxel, nab-paclitaxel, or ixabepilone (Ixempra). Most patients also received concurrent bevacizumab (Avastin), which was approved for breast cancer at the time. Nab-paclitaxel was given at a dose of 150 mg/m2 weekly (per the manufacturer’s request), a high dose that is no longer used. Paclitaxel was administered at 90 mg/ m2 and ixabepilone, at 16 mg/m2 weekly. 

In the previously reported primary analysis, neither experimental arm demonstrated superiority to paclitaxel, and ixabepilone proved to be significantly inferior. At this year’s meeting, Dr. Rugo presented outcomes after a median follow-up of 5.5 years. 

“The two studies were somewhat different in their results…. Where nab-paclitaxel fits into the current treatment armamentarium, I am not sure. The differences by receptor status are interesting but need to be validated.”
— C. Kent Osborne, MD, FASCO

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In the new post hoc analysis, with 4 additional years of follow-up, some differences according to breast cancer subtype have emerged. Nab-paclitaxel showed promising improvements in overall survival and progression-free survival in triple-negative disease, but standard paclitaxel performed better in patients with hormone receptor–positive disease, Dr. Rugo reported. 

“In this post hoc subset analysis, there was significant interaction with receptor status between nab-paclitaxel and paclitaxel for progression-free and overall survival,” Dr. Rugo said. “Further investigation is required to explain and validate the subtype specificity seen in this exploration.” 

Updated Analysis 

ACROSS THE FULL study population, median progression-free survival was similar for the two taxanes: 10.8 months with standard paclitaxel and 9.2 months with nab-paclitaxel (HR = 1.13, P = .16). Median overall survival was also similar: 27.1 months with paclitaxel and 24.2 months with nab-paclitaxel (HR = 1.10, P = .33). The ixabepilone arm, which was closed early due to futility, was inferior across all efficacy measures. 

“Our updated results show that progression-free survival for nab-paclitaxel and paclitaxel are still similar, and ixabepilone is still inferior to paclitaxel. At the time of the primary analysis, we saw no difference in overall survival in any of the arms, but in this updated analysis, ixabepilone is inferior to paclitaxel, and with the weekly dosing we used in this trial, nab-paclitaxel still results in overall survival similar to that seen with standard paclitaxel,” she said. 

By subset, however, interesting differences have been seen, and the multivariate models for progression-free and overall survival showed significant interactions between treatment and hormone receptor status. In patients with hormone receptor– positive/HER2-negative disease, standard paclitaxel appeared more effective, whereas in triple-negative disease, the opposite was observed (Table 2). Given the limitations of the post hoc assessment, these findings were not powered for statistical significance, Dr. Rugo emphasized. 

“Numerically, nab-paclitaxel is associated with a 1-month longer progression-free survival, with a hazard ratio of 0.79, but we are not powered to see statistically significant differences in this post hoc analysis,” she said. “Interestingly, in the hormone receptor–positive/HER2-negative subgroup, paclitaxel results in numerically longer progression-free survival (12.2 months) and the longest overall survival (33.2 months)…. Nab-paclitaxel and ixabepilone were clearly inferior to [standard] paclitaxel in this subset.” 

By receptor status, in the multivariate model, hazard ratios for the comparison of nab-paclitaxel to paclitaxel were as follows: for hormone receptor– negative patients, 0.71 for progression-free survival (P = .052) and 0.73 for overall survival (P = .078) and for hormone receptor–positive patients, 1.35 for progression-free survival (P = .0047) and 1.30 for overall survival (P = .027). 

Grade ≥ 3 adverse events were experienced by 84% in the nab-paclitaxel arm vs 60% in the paclitaxel group. Grade ≥ 3 sensory neuropathy occurred in 27% of those treated with nab-paclitaxel and grade ≥ 3 motor neuropathy occurred in 10%, compared with 18% and 3%, respectively, for standard paclitaxel. Additionally, 26% of 

patients discontinued treatment with nab-paclitaxel due to toxicity. For 68% of patients in the nab-paclitaxel arm, the drug was dose-reduced, mostly to 125 mg/m2

“Adverse events, discontinuations, and dose reductions were more frequent with weekly nab-paclitaxel dosed at 150 mg/m2. This dose should not be used any further in patients with breast cancer,” Dr. Rugo emphasized. She noted that in GeparSepto, a dose of 125 mg/m2 resulted in less toxicity than the higher dose and similar rates of pathologic complete response. 

In an interview with The ASCO Post, Dr. Rugo said the study “has clearly shown that weekly paclitaxel is better than every- 3-week paclitaxel [based on historical data], and it continues to be a well-tolerated and efficacious treatment for metastatic breast cancer.” 

The other main finding is the “intriguing” benefit seen for nab-paclitaxel in triple-negative breast cancer, especially since it corresponds with GeparSepto data, she commented. “There does appear to be some improvement in efficacy with this drug,” she said. “We showed there may be an advantage to either the dose intensity or the type of chemotherapy in triple-negative breast cancer…. Patients did better with nab-paclitaxel, but it’s hypothesis-generating only.”

https://www.ascopost.com/issues/february-10-2018/updates-of-key-studies-differ-on-relative-benefit-of-nab-paclitaxel-in-breast-cancer/" rel="nofollow - https://www.ascopost.com/issues/february-10-2018/updates-of-key-studies-differ-on-relative-benefit-of-nab-paclitaxel-in-breast-cancer/




-------------
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



Posted By: sophie
Date Posted: Jun 19 2019 at 9:55pm
donna,

Thank you for the article. If I understand correctly, does it mean Abraxane has more severe damage in Neology vs taxol? Regarding benefit of treating breast cancer, Abraxane has better Survivor rate than taxol?

Sophie 




Posted By: sophie
Date Posted: Jun 19 2019 at 10:09pm
Kelly,

My current oncology doesn’t know I will be switching for the next treatment, so this is my last treatment with him of getting Taxol bi-weekly ... and surprisingly I had the severe Neology impact, hence he recommended of 3 options, and he prefer texoter...

You are right, I need to find a TNBc specialist but apparently it seems impossible to get in touch with Anderson so kind of stuck now...

Sophie 


Posted By: 123Donna
Date Posted: Jun 19 2019 at 10:28pm
Sophie,

I need to re-read it, but I think the neuropathy issue for nab-pacitaxel (abraxane) was due to the too high dose in the clinical study.

"The other main finding is the “intriguing” benefit seen for nab-paclitaxel in triple-negative breast cancer, especially since it corresponds with GeparSepto data, she commented. “There does appear to be some improvement in efficacy with this drug,” she said. “We showed there may be an advantage to either the dose intensity or the type of chemotherapy in triple-negative breast cancer…. Patients did better with nab-paclitaxel, but it’s hypothesis-generating only.”


-------------
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



Posted By: sophie
Date Posted: Jun 29 2019 at 9:04pm
I had my first Taxol 2 weeks ago and my feet are still in numb... my MO said that I had strong Neology impact and we will be trying to do weekly infusion instead to see if can lower side effects ... My question is if my side effects remains strong or getting worse does it mean that I am no longer able to have the taxol or has to terminate my chemo accordingly?



Posted By: 123Donna
Date Posted: Jun 29 2019 at 11:13pm
Sophie,

Hopefully the weekly Taxol will be easier to tolerate.  Ask your onc if there is anything you can do to help with the neuropathy.  I took Vit. B-6 100mg twice daily.  

Here are a few links on the subject:

https://www.healthline.com/health/cancer/neuropathy-from-chemo" rel="nofollow - https://www.healthline.com/health/cancer/neuropathy-from-chemo

https://www.medicalnewstoday.com/articles/323481.php" rel="nofollow - https://www.medicalnewstoday.com/articles/323481.php

http://chemocare.com/chemotherapy/side-effects/numbness-tingling.aspx" rel="nofollow - http://chemocare.com/chemotherapy/side-effects/numbness-tingling.aspx



-------------
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



Posted By: Kellyless
Date Posted: Jun 30 2019 at 12:14am
The neuropathy I got from my first dose dense Taxol before I started the ice baths did go away about 2 months after treatment ended.  So it can lessen and go away. On weekly Taxol #6 this last time a nurse insisted I do ice packs instead of the bath and the soles of my feet went numb. That too went away by about 5 weeks after chemo ended. Are you doing the ice baths? Full immersion of hands and feet in ice water? 
Are you still looking for a second opinion doc? We can brainstorm some more Dr ideas, as well as how to get into one if you are. It's not totally rare for people to have this issue with Taxol, so there's definitely options. Carboplatin? Carb & Taxotere? I don't even know if that one's done, but there's stronger stuff than Taxotere for sure,  especially since you did surgery first. There were a few things they said I could try when it looked like I might not make it to the end of Carboplatin (not neuropathy - and I didn't use ice with the Carb. I was just very sick) CMF was one, I do t remember any details about it, but Dr. Valero at MDA came up with it. If you end up needing to change, there's options. And the weekly lower dose may do the trick, back in the day when dose dense was the first recommendation, lots of women switched to weekly and it worked. 
How are you feeling other than the neuropathy? This is so stressful, I'm so sorry you are going thru it. Are you sleeping? Feeling depressed? Take care of yourself, you've been thru a lot so make sure you don't ignore the day to day miseries because of the new Bigger Issue. My doctor would say it's a marathon not a sprint, you've got to take care of yourself day to day, work on your quality of life issues as they happen so you can make it to the finish line on time and ok. 



-------------
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!


Posted By: sophie
Date Posted: Aug 04 2019 at 7:56pm
I have been bothered with proof of achieving PCR... I know the easy way to do is to have chemo and then surgery... 

I am about finish Act soon, wondering what to do next as I did sugery first ... can you share your story? I heard there are 6 types of TNBC with high level mutation or not ... any insight is really appreciated....

I know majority of us did act, other than carboplatin is considered for mutations, any additional drugs have been used to help you achieve PCR?

Really appreciated !!


Posted By: believe2019
Date Posted: Aug 06 2019 at 3:00pm
The link you have for the Nagourney Cancer Institute for the testing, have you seen anyone using it? it sounds really useful for treatment options, but howcome hospitals don't use this type of testing for patients?


Posted By: Kellyless
Date Posted: Aug 08 2019 at 8:04am
Sophie, re-reading your last couple of posts, I think I misunderstood you. Were you asking if there's a way to  know if you achieved a pathological complete response when you did surgery first? The answer is no, you have to have a tumor to respond to - it means that chemo literally completely eradicated all of your tumor/s - that  the lumpectomy or mastectomy,  and lymph node tissues removed after chemo are completely cancer free. Since you had successful surgery with clean margins, and did the best chemo known for TNBC, I'm pretty sure the doctors and your insurance are going to tell you that you are done. Are you doing radiation? That may be warranted, but without a reason, like a mutation of signs of cancer still alive I think you've done it all. 
Did you meet with a medical oncologist before your surgery? It seems like most women that have surgery first with TNBC do not, they just see a surgeon and then have surgery. I feel it's just imperative that women be required to meet both the surgical and medical oncologists BEFORE treatment begins. So they understand the medical reasons for doing chemo or surgery first. Surgeons do surgery - New cancer patients, especially TNBC patients, are terrified. The first knee jerk response is GET IT OUT OF ME! The standard of care should be full testing, consultations with surgical, medical and radiation oncologists and genetic counseling prior to any treatment beginning. Why isn't that the case? 


-------------
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!


Posted By: sophie
Date Posted: Aug 09 2019 at 12:45pm
hi Kelly, thanks for your response ... regarding chemo , I still have 4 dose to get in Abraxane prior to wrapping it the chemo ... my body is getting weak an weak each time, i currently most of the time lay on the bed and sweet a lot , I couldn’t move that much as I feel extremely tired... sometimes I am wondering if chemo works or makes my immune system getting worse and possible spread already ? I haven’t discussed with my mo on the extremely tiresome, and not sure if this is side effects or something new ...

I wanted to try Kentrude medicine after chemo is over as it seems a recommendation for immunization therapy...


Posted By: Kellyless
Date Posted: Aug 09 2019 at 7:37pm
Man, you've accurately described me toward the end of ACT, laying exhausted on the bed sweating a lot! I did the 4 dose dense taxol, a few days after my 2nd my oncologist called to check on me. After chatting for a few minutes she said, "you seem a litt!e....blue. Sad, not like your usual engaging self." I laughed so hard! YA THINK? ? Tired, vaguely nauseous all the time, bald, vicious chemo induced menopause symptoms - blue indeed. She put me on antidepressants, in about 7-8 days I started feeling better. Like the black cloud had drifted away. I stayed in em thru radiation, 3-4 months. The good news is that both times all the chemo ickyness faded away after a few weeks. Radiation was really easy for me. 
Sophie, why do you think you need further treatment? What's the feeling you have?


-------------
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!


Posted By: sophie
Date Posted: Aug 10 2019 at 8:59am
hi Kelly, I wanted  to have further treatment after chemo because we don’t know if I have achieved PCR due to I did surgery first... so I wanted to do more for guarantee achieving Absolutely cancer free ... I am thinking to take xeloda and keytrdue ... make sense?


Posted By: JMJ
Date Posted: Aug 14 2019 at 10:54pm
Hi! I too had surgery first, chemo and then radiation. The facility I was diagnosed through (military) did not suggest chemo first and I guess I was in too much of a zombie state after diagnosis to research. I went to a reputable facility for my chemo and I had AC every other week?, then Taxol x 12 with carbo every 3rd week (BRCA 1/2 neg). I also had Lupron injections. Now with my brain Mets they put me on Xeloda, I had more cancer show up in my brain while on Xeloda but they keep me on it in case it’s slowing the growth of what’s in my brain or helping prevent it from spreading to my body. I have found Xeloda tolerable and they have decreased my dose more than once to tolerate it even better. On the right dose for my body it’s been ok to take. I’ve been on it 9 months. Pealing skin on my feet were indicators to decrease dosage. It lowers immunity so I got the flu last winter and had to go off of it for a few weeks, I could tell my brain fog lifted a little, and that was nice. Now I’m used to my new normal and don’t mind it. It’s on 2 weeks on and 1 week off cycles, and I group activities during my week off that I need more energy for. 

I guess what I might say is that chemo impacts people in different ways, and Xeloda might be worth researching further as an option. I was NED in January and the drs were even considering keeping me on it indefinitely as a preventative measure because I was at such a high probability of another recurrence. Maybe there are doctors out there that use Xeloda as a preventative measure after treatment for initial diagnosis is done? 

Lastly, I know this is long, I will say exercise could be your preventative measure, I remember something about TNBC being the breast cancer that responds best to exercise. 

JMJ


Posted By: Kellyless
Date Posted: Aug 15 2019 at 9:27am
JMJ, you've been thru so much! Thank you for sharing.your experience on Xeloda, I read up on it when I was sure I was going to do it after surgery, but never felt I had a grip on what it was going to be like. I ended up not having to take it (luckily, since my surgery went sideways and I had to have 2 follow-up surgeries and 9 months of wound care). I hope it continues working for you.
Sophie, have you discussed further treatment with your MO? What are his recommendations? I'm very curious if there's a way to do Keytruda in your situation. Why did they not just add Carboplatin to your Taxol when you expressed a desire for stronger treatment than ACT? It seems that's becoming more frequently done that's days. I'm so sorry you're having such anxiety about doing surgery first. I really really want to know why there's still so many women doing surgery first without knowing the benefit offered by neo-adjuvent chemo. No one should be dealing with such regret thru this already grueling treatment regimen. 


-------------
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!


Posted By: sophie
Date Posted: Sep 02 2019 at 12:27pm
I am reaching to my end of chemo ... 2 more weekly abroaxine to go... I feel pain & swallow in my joints all over ... does anyone feel the same? And will this go away after chemo is over?

I was offered to take keynote 522 for a year, 1 infusion every 3 week after chemo is over  alone with xeloda if I am interested... 

What you guys think? Is this too much for me? All I want is to achieve PCR... a side note I did sugery first ... 


Posted By: Kellyless
Date Posted: Sep 02 2019 at 3:29pm
Happy labor day sophie! Keynote 522 is a study for tnbc patients receiving neoadjudavent chemo. Both arms of the study does Taxol & Carboplatin, then ac. Every 3 weeks they get an infusion for a year, it's a blind, randomized study where one arm gets Keytruda, the other gets placebo. Everyone I know had Keytruda side effects if they received it. 
Obviously you can't do that, so are they offering you Keytruda guaranteed every 3 weeks for a year, without chemo? Will your insurance pay? Is there proof there's a benefit doing that? 
Doing Xeloda for six months post regular chemo if pCR isn't achieved with neoadjudavent chemo seems to be pretty standard these days. Since you had surgery first, again you need to make sure it's covered by insurance. 
I guess I'm saying you need to clarify exactly what they're offering, is it covered by insurance. Keytruda & Xeloda are expensive. Lastly, does he recommend either or both of these? How do they work together, has that been studied? It's not worth going thru unless there's some evidence that doing it in your exact situation has proven some benefit. It's no small thing. 

Congrats on getting thru chemo!!! Do take the time to revel in it! Perhaps a PET scan to settle your nerves? 


-------------
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!


Posted By: sophie
Date Posted: Sep 02 2019 at 3:45pm
Hi Kelly,

My MO said if insurance not coving it he will get keynote 522 for me from Merck directly no charge... he said he will do it for me for 1 year along with xeloda...

I don’t know what is the side effects for keynote 522 which worries me if I am doing too much to my body?


Posted By: Kellyless
Date Posted: Sep 02 2019 at 5:51pm
The drug is Keytruda, you can Google side effects, they can be extensive. Here's a blurb from the makers of it:

KEYTRUDA is not chemotherapy or radiation therapy—it is an immunotherapy and it works with your immune system to help fight certain cancers.

KEYTRUDA can cause your immune system to attack normal organs and tissues in any area of your body and can affect the way they work. These problems can sometimes become severe or life-threatening and can lead to death. These problems may happen anytime during treatment or even after your treatment has ended.





-------------
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!


Posted By: Kellyless
Date Posted: Sep 02 2019 at 6:07pm
My friend is doing Keytruda infusions every 3 weeks for stage 4 colon cancer mets to the lungs. It's to keep them from growing and spreading. After his first infusion he was in so much pain he called an ambulance. He suddenly had raging rheumatoid arthritis, brought on by Keytruda. He stopped Keytruda and battled the RA for 5 months (where your immune system attacks your joints, it's excruciating). Hes back doing the Keytruda infus kind indefinitely, as long as it keeps his tumors from progressing, or further debilitating side effects crop up. 
I don't know of anyone doing Keytruda, or other immunotherapy  drugs alone that's not fighting metastatic disease. It's definitely a risk. 
You've done a LOT of chemo. AC, Carboplatin and Abraxane - 4 very powerful chemo drugs before you put yourself thru even more, Ask for scans. See how you feel after that. Get a second opinion, see what another TNBC specialist says about you doing further treatment. Take the time to do all the due diligence you can before starting something else. Make sure you're doing either thing because it will matter in your situation, that it's a proven therapy for your disease after the treatment you've had. Dont start them just out of fear, make sure it won't do more harm than good. 


-------------
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!


Posted By: 123Donna
Date Posted: Sep 02 2019 at 10:10pm
Sophie,

I had Taxotere and thought the side effects were harsh.  Mine were every 3 weeks, not weekly.   I posted this link in another thread about Abraxane being superior to Taxol.  Check it out:

https://forum.tnbcfoundation.org/abraxane-superior-to-taxol_topic12294.html" rel="nofollow - https://forum.tnbcfoundation.org/abraxane-superior-to-taxol_topic12294.html






-------------
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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