Response to chemo

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited July 2019

    Hi, everyone--I missed a few posts here--my hubs and I drove to North Dakota for the state fair. It was my 50th state to visit; now I've been to all of them!

    Flo80, I'm ER+ and PR+ and this type doesn't respond as well to chemo as hormone-receptor negative. After my TAC chemo was finished I still had a "smudge" where the redness had been, and the path report after the mastectomy said there were a lot of residual tumor emboli in the lymphatics of the skin. I was totally bummed. But the margins were good, and the rads treatments must have blasted any stray cancer cells that hung around. They put me on Xeloda about halfway through rads; it's thought that the drug makes rads even more effective.

    Blue22, I finished chemo on March 31 and had the mastectomy on April 13. They didn't want to wait long, and I had tolerated chemo pretty well, so I was eager to get it over with. Sending healing hugs for your surgery next week.

    There are a lot of us who've been NED for many years, so keep that flame of hope burning bright.

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited July 2019
    blue22: best wishes to the surgery, sending speedy recovery prayers... it was 8yrs. ago today I had surgery. Th toughest part for me after surgery was dealing with the ‘backups’ from all the painkiller pills. Will suggest get the stool softener on hand.

    sbelizabeth: wow, congrats on completing 50 states visit goal! Well said on keeping the flame of hope burning bright!
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  • blue22
    blue22 Member Posts: 280
    edited July 2019

    Thanks Leslie2010! I am already worried about the backups just from surgery - I had that as a side effect during my chemo to one of the anti nausea meds, as well as after surgery to put in my port - and it caused my hemorrhoids to bleed - not fun. The cancer center where I am going prefers us to not use anything besides Tylenol and Advil for pain after surgery, so if that works I might get lucky and not have it so bad.

    sbelizabeth 50 states is pretty cool. Congrats!

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  • Jbh_9904
    Jbh_9904 Member Posts: 9
    edited August 2019

    Leslie, where do you see an IBC specialist? I am looking for one since I now have dermal lymphatics invasion.

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited August 2019
    jbh 9904: sorry to have to ‘welcome’ you on the IBC forum. Dr. Massimo Cristofanilli was the IBC specialist I consulted. He has moved to Chicago. I hope your insurance will cover consultations with him. He is excellent and very caring. He actually wrote me back on July 4 when I felt no change to the mass after 6 months of chemo and was panicking. Best of luck to you!!

    Blue22: how are you? Have you gotten path report from the surgery?
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  • blue22
    blue22 Member Posts: 280
    edited August 2019

    I haven't received the full pathology report, but did receive a partial summary from my BS.

    The good news is the margins were clear. However there was quite a bit of cancer remaining - 5.6 cm, as well as 5/14 positive lymph nodes. The cancer changed from HER2- to HER2+ Also, I had ADH in my other breast that was removed and turned out to be DCIS.

    I was pretty upset about the results. I'm scared that the chemo did so little and can't help thinking that the cancer could have spread during treatment. I also regret not pushing to have a BMX, because I will now always be worried about the breast that just had DCIS.

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  • Flo80
    Flo80 Member Posts: 349
    edited August 2019

    Hey Leslie what type of chemo did you do?I have completed three rounds of Ac and have the fourth next week. My mass did reduce but just wondering how much it should in three rounds of chemo

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited August 2019

    blue22: congrats on the clear margin!! (((gentle hug))), sorry to hear about not so satisfactory result, but they are out of your body now. Don’t look back, there are a lot of treatment options for you. Focus on healing and getting ready to fight. Sending speedy recovery prayers....


    Flo80: great to hear your mass reduced! Mine was triple negatives, so the chemo used might be different. And, everyone responds to different chemo differently. After 3 rounds of AC, my mass didn’t budge, MRI confirmed it, so it was switched to weekly taxol+carbo.
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  • Flo80
    Flo80 Member Posts: 349
    edited August 2019

    Thank you Leslie but I have been having some cough and had a bad one last few weeks again. They did the chest X-ray which was clear and antibiotics helped but after a. Week or so now I am again having cough dry but making a sound. I was so worried about Mets but the on call oncologist said that since the X-ray was clear he won’t worry about this being Mets and also since o am on chemotherapy. He says watch for any fever as well

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  • Jbh_9904
    Jbh_9904 Member Posts: 9
    edited August 2019

    Sorry, but what is TNs?

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  • Jbh_9904
    Jbh_9904 Member Posts: 9
    edited August 2019

    Newfrommy Did you have dermal lymphatic invasion? I got some response to TCHP but then the "rash" appeared after first couple rounds. No one was concerned or tested it but it was tumor emboli , now I am on AC. It stinks to have more chemo when you were about to get surgery and thought you were done :-(

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  • Missmom79
    Missmom79 Member Posts: 202
    edited August 2019

    i believe it means triple negative ER- and PR- Her

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  • Jbh_9904
    Jbh_9904 Member Posts: 9
    edited September 2019

    Hi Leslie 2010. Do you have contact info for Dr. Massimo Cristofanilli? Thanks.

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited September 2019
    jbh 9904: based on Northwestern Medicine website, you can request an appointment online.
    https://www.nm.org/doctors/1891880563/massimo-cristofanilli-md
    Or, call 866-587-4322
    Hope you get to see him soon!
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  • Jbh_9904
    Jbh_9904 Member Posts: 9
    edited September 2019

    Leslie2010, thank you for the information. where were you treated? Also I see you mentioned concurrent radiation and chemo? So, you had them at the same time? Do you mind sharing your regimen with me? Also, did you have to see Dr Massimo Cristofanilli in person or did he just give you advice based on a chart review of your history?

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited September 2019
    Jbh 9904: I was treated in Northern California, went to Fox Chase in Philadelphia where Dr. Cristofanilli was working at the time for 2nd opinion, when after 3 rounds of AC my tumors were not responding. I did see Dr. C in person and I believe you do need to be seen in person. My local oncologist was open to that so it made things much easier. When I went to see Dr. C, my local oncologist already switched me to weekly Taxol + Carbo combo chemo. Dr. C agreed that was a good decision and warned me not to have surgery before near complete response to chemo due to my TNs status. I saw yours is Her+, so it’s different. The Xeloda plus radiation treatment came after I completed Taxol + Carbo when the MRI result was inclusive. The local tumor board was recommending surgery, so I had to sign a waiver to do the radiation chemo concurrent treatment. That decision was not easy, even my own brother that has a breast cancer team worked under him advised me radiated skin would be very difficult to stitch up.
    It is hard to travel far to see another doctor, there are more ‘paperworks’ involved, making sure medical records were released and sent to the right place at the right time, having biopsy slides sent also ( thank God my surgeon was very cooperative also), and dealing with insurance. But, it was worth it for me. Understanding how rare, weird and aggressive IBC is, following an IBC specialist’s recommendation was a no brainer for me.
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  • Jbh_9904
    Jbh_9904 Member Posts: 9
    edited September 2019

    hi Leslie 2010. Thank you for the info. I have put a call in for dr. Cristofanilli but no appointment scheduled yet. I meet with my oncologist this week and having an MRI on Wednesday before round 4AC to see if I'm making any progress after three rounds of AC. It's hard to tell I can still feel the tumor somewhat and the red rash over the tumor area which has been confirmed to be tumor emboli seems to be lighter in the mornings and get brighter as I get up and move around. It's very strange. Did your redness ever completely fade I just wonder how much of it could be scarring on the skin? I guess the MRI will tell us more I'm just wondering what their expectations are? Did you see a better response when she were switched to the weekly taxol?

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  • Leslie2010
    Leslie2010 Member Posts: 70
    edited October 2019
    Jbh 9904: sorry for the late reply, just saw the msg. today, also PM you. I have darker skin tone, mine affected area looked and felt the same the whole 6 months. I did hear a lot of ladies said the color changed from time to time. Hopefully, your MRI result will give you good news. It’s very hard to say which chemo did what, my 3 rounds of AC did stop the progression, did minimal in reducing sizes of 2 tumors, no change on suv from pet/ct result, so they switched. The weekly Carbo+Taxol did do the job, the SUV on those 2 tumors did reduce a lot at the end. But, the MRI suggested the whole area was diffused with scar tissue and cancer cells (IBC comes in sheets/nests), with TNs, Dr. C cautioned me to get more done before surgery. Because, for TNs, there is no target treatment.
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  • Flo80
    Flo80 Member Posts: 349
    edited October 2019

    Hi there guys I have finished 4 rounds of dose dense Ac and three cycles of dose dense Taxol. I just did my MRI and waiting for the results. My tumour did reduce and the little redness I had has gone away. But I still feel the little mass which the doctors can’t measure by hand now. So the MRI would say wether this is tumour it the scar tissue. The redness will eventually go away JBh

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