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Carboplatin-Taxol + Keytruda - Thread to Share Your Experience

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Comments

  • kater2021
    kater2021 Member Posts: 9
    edited December 2021

    DWT333- your post is great, helpful to hear what has worked for you and also so glad you have had such minimal symptoms relatively speaking. Agree that caring for ourselves is key, and keeping perspective is so helpful! Congratulations on making it to the almost-end of this phase of the cycles!

  • AnnieG11
    AnnieG11 Member Posts: 5
    edited January 2022

    Hello…this is the exact regimen I just finished last Tuesday. But was told I would have to have Keytruda every three weeks for a year. (?). I have felt so weak, at times unable to get out of bed. Was wondering when I will get my energy back. Any idea? I am 74 years old and this is my third recurrence. The last one was a couple years ago and just had mastectomies, no treatment.

    Having surgery in a few weeks. This treatment has shrunk the tumor..yayyy. But I am very anxious all of a sudden, feel almost out of control. So upsetting. Anyone else feel this way? Taking Ativan but not helping much. And I have no appetite except for right after chemo and the steroids.

    I would love to hear what others experiences have been.

    Thank you, and God Bless

    Anni

  • PRbonita45
    PRbonita45 Member Posts: 10
    edited January 2022

    Hello all!

    I'm so happy to have found this thread. I was diagnosed with TNBC in 11/21. Currently, my treatment regimen is AC for 4 cycles x8 weeks and then to proceed to Taxol + Carbo + Keytruda weekly for 12 weeks. I enter into my last round of AC next Tues.!! I was hoping to find others who are currently undergoing the new trio treatment regimen. My MO already explained that these 3 in combination will produce a high level of toxicity and depending on my tolerance, we may have to cut out one or more of the combo.

    With AC, my first cycle was by far the worst! Every side effect + severe cramping/bleeding. Second cycle I struggled with all the same side effects to a lesser degree. So I'm almost positive that I was thrown into menopause. Because I already struggle with a ton of GI issues, this has been the most difficult to manage. I have found the most relief for nausea, not from the Compazine/Zofran but from THC. This last cycle, I never even used the prescribed anti-nausea medications.

    Kendara- My MO recommended I take Miralax daily and then use Senna if needed. This has worked but I feel that is partly because I'm not taking the prescribed medications that add to our already complicated GI system.

    Santabarbarian- I might try the fasting!

    Anybody on the AC regimen experiencing neuropathy like symptoms? I was told this would be a side effect of the Taxol but not AC. One of the RNs I spoke to this week said she has never witnessed anybody on AC develop neuropathy. Thy symptoms began the second cycle in my hands...sensitivity to hot/cold, tingling, red and then this week the symptoms extended into my feet. Another member said it could be 'hand and foot' syndrome (Palmer-Plantar Erythrodysesthesia) which is caused by the leakage of the chemo drugs from the capillaries into the hands and feet. I still need to verify this with my MO but I did do some research and found information on it.

    In love,

    PRbonita45


  • Kendara
    Kendara Member Posts: 13
    edited January 2022

    PRbonita-I am sorry you're having issues with your hands and feet! It does sound like hand and foot syndrome rather than peripheral neuropathy.

    Annie-here is my experience. I completed 12 weekly Taxol/Carboplatin infusions Dec. 13. I also received four Keytruda infusions, once every three weeks. I had so many side effects and was basically bed-bound. Despite using frozen gloves and booties at every treatment, I developed neuropathy. At first it was just numbness and tingling. About 3/4 of the way through, I developed severe pain down the backs of my legs. And after treatment finished, my feet went from numb and tingling to excruciatingly painful. The MO says it will get better eventually (like in a year!). I can't tolerate socks or shoes and walking is difficult. I also lost 17% of my body weight, which was in the normal range at the start of treatment. My weight has continued to drop because the issues that make eating difficult have not resolved. I knew I might not survive more chemo so after a lot of research and consultation with another MO, I decided to go straight to surgery, to be followed by rads and more Keytruda.

    I had a good response to chemo in that my tumor shrank down from 2cm to “BS can't find it on ultrasound" and I will need a guide wire placed before surgery. I may or may not have a pCR; but the second MO said the AC would only add maybe 2% to my chances and it was not worth it to me. Everyone is different and I wish a better experience for others, but my life has been thoroughly diminished by chemo in a way I couldn't have imagined. I can only pray for healing and hope that someday I will be able to look back on this time and say that the suffering was worth it.

    Sending prayers and loving thoughts to all of you,

    Kendara


  • PRbonita45
    PRbonita45 Member Posts: 10
    edited January 2022

    Hello everyone,

    I wanted to come on and check in to see how everyone is doing.

    Oddbood, how is the treatment regimen? I begin mine next Tuesday and I am so nervous about the side effects.

    Anni, you finished this and I know you talked about fatigue, is it getting any better?


    In love,

    PRbonita45

  • ARJal
    ARJal Member Posts: 18
    edited January 2022

    Hi everyone,

    I finished Carbo + Taxol + Keytruda and wanted to shared my experience for those interested. During my first cycle (week 2) I developed a rash on my leg and torso, the rash was not itchy. I was given a corticosteroid cream and a high dose of antihistamine. After about 2 weeks or so the rash completely resolved and didn't come back. During my second cycle (week 5) I ended up in the hospital for 2 days with a high fever and tremors. They originally thought I was undergoing sepsis but that was not the case. I had a reaction to what my oncologist believes was Taxol and was switched to Abraxane and was heavily medicated before and after infusions. During this time I also had major inflammation, my joints swelled up like balloons. After the switch I had no more incidents relating to infusions. I did develop a skin infection after I had a cut in one of my hands which speaks to how fragile our immune system is, stay safe. Overall, I felt okay under this chemo regimen. The day after infusions I did feel all stuffed up in the head but it cleared by day 3 or so. I could go on walks or ride my stationary bike. I did not have nausea or intestinal issues. Other weird SE's: my right eye did twitch and I developed ringing in the ears. Luckily my eye stopped twitching and the ringing in the ears is getting better. My oncologist sent me for a hearing exam to keep track of my hearing but I only went once. The audiologist didn't see anything concerning and my hearing was fine. If you are starting with this regimen, stay hydrated and follow up with our medical team with any SE's. After my reaction to Taxol I thought I wasn't going to make it but I finished! Please feel free to ask any questions :) God Bless.

  • PRbonita45
    PRbonita45 Member Posts: 10
    edited January 2022

    ARJal,

    Thank you for sharing. Although everybody responds differently to the chemo drugs, it's nice to hear others stories on what SE may be exhibited. Yes, our MOs are the ones to provide us with all the potentials but they don't always have all the answers. I learned that when I had developed hand and foot syndrome from AC, which my MO never acknowledged. I start carbo + taxol + Keytruda this Tuesday..wish me luck!

    A congratulations is in order for you persevering through this! I probably should have said that right from the jump!!

    In love,

    PRbonita45



  • ARJal
    ARJal Member Posts: 18
    edited January 2022

    @PRbonita45: Good luck!! You got this!

  • Towerqueen
    Towerqueen Member Posts: 5
    edited January 2022

    Okay, I sure wish I would of gotten on this site in the beginning. I'm 58 years old and my mom and two sisters have had BC but each of us have had a different type and we have no markers?? Diagnosed TNBC in November and started chemo 11/19/21. I see many talk about AC??? Not sure what that stands for? My chemo is put into 2 series. I'm currently still in the 1st series which is Carboplatin, Taxol and Keytruda, All 3 the first week, then just Taxol second and third week for a total of 12 weeks. 2nd series is Doxorubicin, Cytoxan and pembrolizumab immunotherapy and Pegfilgrastim once every 3 weeks for 12 weeks, then plan on double mastectomy and reconstructive surgery.

    First few weeks of chemo were pretty easy only side effects lost my hair in the 3rd week but still have my eyebrows and eyelashes!! About day 3 I experience what is called chemo brain, I'm really kind of spacey and not able to concentrate well at all. It usually only lasts one day. I'm now experiencing fatigue and just got Thrush yesterday but still working full time as a Construction Manager. When diagnosed my tumor was 2 cm, yesterday at my ultrasound they couldn't find the tumor at all!!! Woo hoo!

    I know the type of cancer we have is very aggressive but I'm still questioning why I have to complete both series of chemo before surgery. I would think we'd do surgery and then finish with the chemo. Since my treatment is so new there just not much information. After reading many of your stories I feel very lucky that so far my treatment has had minimal issues.

    I've also done the ice gloves and slippers for neuropathy and so far I haven't developed any symptoms.

    I thank you all for sharing and hope to keep up with you all.

  • moderators
    moderators Posts: 8,637
    edited January 2022

    Hey All!

    We're here for you ! You got this!

    Towerqueen, we welcome you and glad you found us.

    Standard of care for Triple negative is series of chemo, but definitely talk with your oncologist about this. They should be able to explain based on your diagnosis. By the way AC is Adriamycin and Cytoxan. They sometimes refer to it as the "red devil".

    We're all here for you !


  • anne333
    anne333 Member Posts: 7
    edited January 2022

    Hello everyone. Thank you all for being here and sharing your stories. I'm on this exact regimen starting this Friday, Feb 4. I'm suddenly terrified. Has anyone ever run this regimen past a second opinion beyond your initial doctor's recommendation? Part of me wants to do this for peace of mind, and part of me is scared I'll get in a mental bind and not be able to decide who's right and what to do. Any thoughts or similar experiences? Thank you in advance.

  • Towerqueen
    Towerqueen Member Posts: 5
    edited February 2022

    I'm on my final rounds of this treatment before I start the AC series. I had an ultrasound last week which couldn't detect my tumor anymore. But I had my treatment on Friday, then on Sunday I slept 20 hours and today I've been mostly sleeping also. This hasn't happened until now....I'm just feeling whipped. Has anyone else experienced this? So far I've never ever been like this and its actually scaring me being this weak. Should I get checked or is this normal for chemo? So far my chemo has been relatively easy to go on with my normal activities. The last two days have been horrible. Any advise?

  • Towerqueen
    Towerqueen Member Posts: 5
    edited February 2022

    I was terrified too. But after 9 treatments my tumor is gone....I'm so excited. But the last two days I've been extremely tired. Everything I have read and experienced makes me feel this is the best treatment plan for us with TNBC. Good luck and you got this!

  • anne333
    anne333 Member Posts: 7
    edited February 2022

    Congratulations, Towerqueen! Glad your tumor is gone. I feel very encouraged that this is the right treatment for me. Thanks so much for sharing your experience!

  • Towerqueen
    Towerqueen Member Posts: 5
    edited February 2022

    Anne333 - how did your first treatment go? Hope your doing fine.

    Others - I had blood work done this morning to check my blood work to see if I need a blood transfusion. This is the reason for being so tired and out of breath. Has anyone else needed to have one? I've been trying to eat healthy but if this will help me get my energy back I'm all for it.

  • Optimistic_Missouri
    Optimistic_Missouri Member Posts: 24
    edited February 2022

    I'm not sure whether to post here or start a different thread. I begin the Keynote 522 regimen on Monday. This was recommended by a doctor at a Cancer Center where I received a second opinion. I read some of the studies and I understand this increases the chance of pCR from 51% to 64%. Given the overall better outcomes for pCR patients, I'm excited to add the 13% in, over standard chemo (alone).

    Here's my question. Has anyone with lymph node involvement reached pCR following neo-adjuvant chemo? If so, how do they decide how many lymph nodes to take? I know that I have one involved but until the surgery, I don't know how many others are/were infected. I know they'll want to remove the known node. Say I have three that are cancerous right now, they would want to remove all of those. But if the chemo works there won't be any cancer left in any of the nodes. Do they take a certain number to be on the safe side?

    Also, I haven't met with a radiology oncologist yet. Is it common for those who have reached pCR to have radiation following surgery? I'm planning a bilateral mastectomy and the tumor is not close to my chest wall.

    Thanks in advance!

  • PRbonita45
    PRbonita45 Member Posts: 10
    edited February 2022

    Hey everyone,

    I started my Taxol, Carbo, and Keytruda on January 25 and unfortunately that knocked my counts down so much that on week 2 and 3, my MO would not treat me with the scheduled Taxol. My counts finally came up enough this week (although I'm still quite anemic but I also carry both Sickle cell trait and Beta Thalassemia) but she didn't feel comfortable proceeding with all three drugs due to my AST/ALT starting to skyrocket. Has anybody else had issues with liver enzymes on the trio? My MO thinks it might be the Keytruda. Has anybody else had issues?

    Also because my counts are dropping so much, my MO wants to put me on Neuprogen but we are fighting with my insurance because they denied it. Has anybody had to go on a bone marrow stimulator with the trio treatment? Did you have issues with insurance covering it? I had Onpro after each AC treatment, which is standard of care and I guess that's why it was approved then.

    I was told this regimen was going to be much easier than the AC regimen but I am not sure about that.

    PRbonita45

  • Towerqueen
    Towerqueen Member Posts: 5
    edited February 2022

    PRbonita45

    My blood counts dropped also but not to the point of a transfusion or stopping treatment for this. But the AC treatment I have to have an EKG and Echo regularly plus cardio bloodwork. Cardio doctor is the one that calls the shots on whether I get chemo or not. Anyone else have heart problems with the AC series of the treatment. Just happy I only have 3 more treatments.

  • anne333
    anne333 Member Posts: 7
    edited February 2022

    Hi Towerqueen. Sorry for the delayed response. My first treatment was delayed here because of a freak ice storm, but I've had two since then all is going well, except for a low B12 count. Thanks for asking! Hope you are still doing well!

    For PRbonita45--I haven't had any of those issues thus far, but my heart goes out to you, especially when dealing with insurance companies. I certainly hope you can get that sorted out. So frustrating, I'm sure.

  • anne333
    anne333 Member Posts: 7
    edited March 2022

    Hi. I don't know if you already got your answer but just wanted to let you know you're not alone. The treatment has knocked my white blood count and neutrophils down as well. Same thing about receiving 'the shot' to stimulate bone marrow production. My insurance approved it. It doesn't seem fair that yours denied it. Sorry I can't be more help in that issue--not really sure what to do. My oncologist has taken the same approach of withholding either the Taxol or Carbo. It sounds like it's the only option. I know how emotionally taxing it can be to start, stop, stall all the time. My heart goes out to you and I'm sending you healthy well-wishes. Just know that you're not alone. One of the nurses told me said that some people just metabolize the drugs differently but those with this issue tend to have positive outcomes. Something about the chemo staying in our bodies longer and doing its job. That gave me some comfort. I hope it gives you some as well.

  • TigerGirl72
    TigerGirl72 Member Posts: 8
    edited April 2022

    I came back to this thread to share my path results after neoadjuvant chemo. (12 taxol/carbo, 4 AC, Keytruda) I had PCR! I am hopeful for myself and others who are receiving this treatment. I still have radiation ahead as well as 9 more Keytruda infusions.

  • norcals
    norcals Member Posts: 214
    edited April 2022

    tigergirl72:

    Woohooo! Congrats on the PCR! I have been hoping that this new regimen would produce good results. I have heard that it’s a tough treatment and I can tell that you went through A LOT, but I am so glad for you that you got a PCR. I think all the TBNC sisters can relate to how significant it is. Big smiles and hugs for you

  • anne333
    anne333 Member Posts: 7
    edited June 2022

    Hi everyone. It's been a while since I posted here. Glad to hear there are some good success stories out there. I have finished my 12 Taxol + Carbo treatments. My oncologist dialed back the Carbo because it was depleting my white blood counts so much. I have now finished 2 rounds of AC and have 2 more to go. The last time I had an ultrasound, the tumor had shrunk by more than half! So I'm very encouraged by that. I asked my oncologist last time if there was any way I could get out of having surgery. Like maybe the tumor would shrink all the way to nothing and then I could be done. He said no. I realize this is probably wishful thinking, but I was wondering if anyone knew of a case like that? Thanks for all your support. I hope everyone is keeping the faith and hanging in there. -- Anne

  • maryna8
    maryna8 Member Posts: 1,832
    edited June 2022

    Hi Anne

    I saw your post and want to congratulate you on being almost finished with your treatment.

    As to not having surgery, not sure here. Everyone I know who has Triple Negative diagnosis did have surgery, it's an aggressive cancer and the docs want to be sure everything is clear. I had one breast removed, then they checked my lymph nodes and removed 3 to test for tumor, 2 of them had cancer.

    Best of luck to you, do tell us what happens next.

    Mary

  • blums8
    blums8 Member Posts: 18
    edited June 2022

    I also started this new protocol, for TNBC, in February. I had 12 weeks of Taxol/carboplatin with Keytruda every three weeks. I tolerated the regimen pretty well. I did develop some neuropathy. It started at the end of the 12 weeks.

    Now I am getting Adriamycin,Cytoxin and Keytruda every three weeks. I have had 3 out of 4 infusions. This part of the protocol is def harder. I get pretty tired the first week and "fuzzy" in the head! But I only have to get through one more on July 6th. I will get 9 more infusions of Keytruda after that.

    I am so happy to be approaching the end of the chemotherapy. I want things to taste good again!!!


    Now I have to decide whether to do a single or double mastectomy. My left breast is the TNBreast, but I have a very small DCIS in the right and at the very least have to have lumpectomy and radiation.

    Has anyone chosen mastectomy to avoid radiation? That is the direction I am leaning.

    Thanks for this forum and thanks for any input you might have.


    Janice

  • Optimistic_Missouri
    Optimistic_Missouri Member Posts: 24
    edited June 2022

    Janice,

    It sounds like we're on the exact same schedule. I will have my last AC+K on 7/5.

    I met with my surgeon again last week and am waiting for a surgery date in early August. In regards to your question about radiation, from everything I've read it may still be required, even with a mastectomy. My tumor wasn't huge to begin with, but since it was in a lymph node, I may need it after my DMX. I won't find out for sure until after surgery. TNBC is and aggressive beast. Just something to consider.

    Congrats on nearing the end of your chemo!


  • kmerlin513
    kmerlin513 Member Posts: 1
    edited September 2022

    i am currently going thru carb keytruda and taxol every 3 weeks and taxol weekly because they reduced the taxol smount so i will better tolerate it. So far so good. Just losing hair now. And its been 3 weeks. I will end with keytruda and AC every three weeks. Its a long road but time does fly. 7 years ago i had a mass in my right breast found by a routine mamo ER/PR POSITIVE. Treatment was ACT CHEMO and radiation plus 5 years tamoxifen. Now i had another routine mamo and they found two masses in left breast grade 3 and triple negative. Chose double masectomy with immediate reconstruction. No lymph node involement. Treatment is carbo/keytruda/taxol every three weeks with just taxol for the two inbetween total of 4 treatments. Then AC/keytruda every three werks for a total of four. Gingerale water peanut butter have become my best friends

  • moderators
    moderators Posts: 8,637
    edited September 2022

    kmerlin513, we're sorry for all you are going through, and glad you found us Medicating. Also, consider joining the meetups that we have on Zoom, if you want to talk with others "in person". https://www.breastcancer.org/community/virtual-mee...

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