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123Donna View Drop Down
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    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:





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: 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post 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?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post 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 ... 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JMJ Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post 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?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post 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...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote believe2019 Quote  Post ReplyReply Direct Link To This Post 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?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sophie Quote  Post ReplyReply Direct Link To This Post 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 !!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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:




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 sophie Quote  Post ReplyReply Direct Link To This Post 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?

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

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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 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 
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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 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 


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