Mom had bad reaction to chemo. Help please!

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Camille208
Camille208 Member Posts: 4

Hi everyone,

My 75yr old mom was recently diagnosed with TNBC (stage 3, two small tumors, one node involved). Both the surgeon and the oncologist were encouraging and used the word "curable" and planned to attack this via neo-adjuvant chemo and then surgery (double mastectomy). My mother was in good health and very active for her age but the oncologist was worried about her being 75 and originally thought they would do CMF chemo in lieu of ACT. After a bunch of tests including biopsies and a breast MRI in which it looked like a little more diffuse area involved in the breast in addition to the actual tumors, she changed her mind and decided to give ACT a shot and be a little more aggressive. My mom has always run a bit low on sodium and on her first chemo day when they drew labs, it came back at 129 (normal is 135-144). This didn't appear to be a red flag and they went forward with chemo. The first night was so so with a little nausea and not feeling very well but by mid-day on the second day she was extremely shaky and twitchy and had even more nausea and a headache.

To make a long story somewhat shorter, we had to call 911 because she ended up having a seizure and fading in and out. The paramedics and the ER thought she had had a stroke because by the time she got to the hospital she had facial drooping and word salad going on and couldn't follow commands, etc. They started her on TPA protocol for a stroke (9 min total) before a great neurologist got there and determined the whole episode was due to her sodium dropping (down to 109 which is very, very low!) and not a stroke at all. She was in the ICU for three days and the hospital for a week altogether and pretty much missed out on any of the other chemo side effects due to being so out of it for a few days (aside from almost dying, anyway!). It was pretty traumatic and we're lucky it didn't go the other way so I am very thankful but terrified of the implications of all of this for her treatment.

A nephrologist we saw during the hospital stay talked to us about the sodium episode most likely caused by the cytoxan in the ACT chemo after he studied a few cases (technically called hyponatremia). I guess this is seen quite a bit with lung cancer but only a few cases documented with breast cancer. We saw the oncologist after this at an appointment and we talked about hospitalizing my mom and monitoring her very closely on the next round of chemo which was supposed to happen this past Monday. However, last week we got a call and the oncologist had talked to some colleagues and presented my mom's case in a conference and she was even more concerned about how to proceed.

From what I gathered from the phone call I had with her, none of the documented cases of this type of event had been re-challenged with the same drug after an episode like this — especially no one my mom's age. So understandably, the oncologist was worried and had decided she wanted to talk to the surgeon and possibly go forward with surgery first. I didn't have all of my wits going for me when I talked to her in order to ask decent questions so it was a bit confusing and we're very unsure of what the plan will be after surgery. I know she talked about getting her sodium levels up so it wouldn't drop as far which I assume means more chemo, but if that's the case, I don't entirely understand the difference in attempting it now vs. later (it will be terrifying either way). And I can't imagine this means they won't try it at all as my mom's cancer is aggressive and one dose is not going to cut it, even though the one dose actually shrunk my mom's tumors to the point she's having trouble finding the one that was the most prominent (the only good news so far it seemed to work).

Other than being terrified myself of what this all means and how we're going to get her through it, I suppose my question is if anyone has ever had anything like this happen or they had to stop for some other reason and how you think the oncologist might proceed in a case like this with the worry about sodium vs. another event occurring. This has all been so overwhelming, I feel like I can't even think straight and I'm having a hard time trying to be positive when we feel like we're back in the pre-plan limbo again. I am an only child and very close to my mom and I will be there for her no matter what, but I just want to be able to give her support and help her understand everything and right now I don't understand any of it myself so just in a tough spot and looking for some support and advice or suggestions from any of you lovely ladies on this board.

Thank you so much for indulging this very long, late night post from a very scared daughter.

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2016

    Dear Camille208, Welcome to the BCO community. We are so sorry to hear about your mom's experience and the dilemmas that it is causing for her and you. We are glad that you reached out here. While you haven't yet received a response you may want to explore our main site for more information. Here is a link to questions about chemotherapy. You might also explore the forum about Chemotherapy. Keep us posted and stay connected here. the Mods

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2016

    Dear Camille208, Welcome to the BCO community. We are so sorry to hear about your mom's experience and the dilemmas that it is causing for her and you. We are glad that you reached out here. While you haven't yet received a response you may want to explore our main site for more information. Here is a link to questions about chemotherapy. You might also explore the forum about Chemotherapy. Keep us posted and stay connected here. the Mods

  • gracie22
    gracie22 Member Posts: 229
    edited December 2016

    Camille, hoping someone with experience specific to your mother's age and cancer type will come along. The article below generally describes concerns with using chemo on the elderly, and the last para includes a link to a survey done for elderly patients to assess their chances of surviving it successfully. Your docs have likely already done such an assessment, but check and make sure. Chemo is usually recommended for TNBC, but age does matter quite a bit. Chemo and radiation pose additional risks for the elderly. Get as much info as possible before electing to try it again. The one treatment seemed to shrink things a bit so it sounds as if she got some benefit, even if you opt not to do more. I am aware of one poster on the boards with TNBC, age 70, who opted for surgery only after discussing it with her oncologist thoroughly, though she was stage 1 as I recall; there are likely others and hopefully someone with that experience will chime in. I wish you and your mom well.

    https://www.scientificamerican.com/article/soh-survey-predicts-tolerance-to-chemotherapy-for-older-patients/


  • Camille208
    Camille208 Member Posts: 4
    edited December 2016

    Thank you very much for the reply...Much appreciated. My mom is 75 but very active -- one of the reasons they decided to do the ACT chemo in the beginning. It's hard for even her doctors to remember she's elderly sometimes. Anyway, for a small update...We saw the surgeon again yesterday and she still believes we should try another round of chemo while admitted and closely monitored in order to make the surgery less invasive and keep from having to do a full lymph node dissection in the end. As mentioned, cytoxan is apparently in every breast cancer chemo regimen so whether she tries now or later, if she is going to do chemo, she will have to face it again anyway. My mom is definitely not wanting to just stop and take what they are still telling her is curable and make it into something else and I do understand that. The oncologist is still very worried, understandably, and who knows if she will agree with what we talked about but as it stands now, the surgeon is going to talk with her and figure out a plan and we should have something (whatever that something ends up being - whether chemo or surgery) scheduled next week.

    Meanwhile, I'm terrified thinking of the what ifs but trying to be strong for my mom.


    Thank you again!

  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2017

    Just seeing this tonight... Camille, I don't know where your Mom is being treated, but I would strongly suggest that you get a second opinion on what to do going forward, preferably at an NCI-designated cancer center. These are the best of the best places for treating cancer -- the top research oncs who also see the most bc cases, the most TNBC, and will have the most experience with women your Mom's age. Here's a list. Hopefully, there's one close to or within a reasonable drive of where your Mom lives. https://www.cancer.gov/research/nci-role/cancer-ce...

    If I was in her situation, I don't think I would try another round of ACT. In fact I'm kind of surprised they suggested it for her at all, given her age and the risk of heart damage that Adriamycin poses. But I would absolutely want input from an onc with extensive experience with TNBC at one of institutions on that list. If you're not within a reasonable proximity to one of them, a few (John Hopkins, for example) will also do long distance consultations.

    Good luck, and feel free to send me a private message (just click on my avatar and it will give you that option) if I can help any further.

    I'm so glad your Mom survived what sounds like an incredibly scary episode! Hugs to you both. Deanna

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited January 2017

    Gosh Camille so sorry this happened to your mom. ACT is a very aggressive treatment. It was what was originally given to me. I didn't handle my first round well at all. My WBC dropped to .7. My onc didn't mess around. She immediately switched me to AC + T. No more problems after that. I feel bad for your mom as I remember how horrible that first round of ACT was and I'm 20 years younger than your mom.

    Hugs

    Nancy

  • Camille208
    Camille208 Member Posts: 4
    edited January 2017

    Gosh, you know maybe I am mixing up the chemo regimens. I was under the impression that ACT is the same as AC+T? She was originally scheduled to do 4 AC (3 weeks apart each) and then Taxol after that (I believe 12 weeks but would have to go back and look at my notes which I don't have handy). I apologize if I have described her regimen incorrectly...I'm still learning all of this and trying to keep up on what's happening or should happen and honestly feeling a bit overwhelmed. Anyway, just wanted to say I was sorry if I misrepresented anything. :-(

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited January 2017

    Hi Camille - yes ACT is with taxotere. AC + T is with taxol. I had the latter which sounds like what your mom is having. Some people have a hard time with the AC and then do better with taxol and vice versa. Good luck to your mom. She's lucky to have you.

    Nancy

  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2017

    And Abraxane is a much gentler taxane and can sometimes be used in place of Taxol or Taxotere if a patient has had a bad reaction to one of those. It doesn't have the filler (solvent) ingredient that make Taxol so harsh. Here are a couple of articles that talk about it. Definitely something to ask about if continuing her current regimen is recommended.

    http://www.breastcancer.org/research-news/abraxane...

    http://www.breastcancer.org/research-news/taxol-be...

    And here's another article I just pulled up for you. I'm not TNBC, so can't comment from that POV, but this looks worth reading:

    http://www.breastcancer.org/research-news/triple-n...



  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2017

    Camille, I would definitely get a second opinion. I have found oncologist to be so focused on treating and killing the cancer they over look other health issues sometimes deadly issues. My mom just had a stroke episode TPA and she is fine now. They blamed aFib, cardiologist said it sounded plausible but finds no supporting evidence. They have my mom on too many medications I have lost trust. I feel better getting other opinions outside her medical group.

  • Camille208
    Camille208 Member Posts: 4
    edited January 2017

    Thank you everyone...All of this information is very much appreciated. As for second opinions, I wish we had that time but I don't think we do. If we were in a bigger city it would be much easier but the team she has did come very highly recommended and for our city size, the place she's being treated is very well respected. This particular oncologist seems to be pretty conservative and originally had planned to treat her with a CMF regimen because of her age, etc. Then the scans showed more diffuse areas affected and it was hard to determine tumor sizes because of that. It had also involved a lymph node and all of this had happened in a very short time and so after talking with the radiologist and some of her colleagues, they decided she needed more aggressive treatment and hence the AC+T. Other than the pesky sodium issue and high blood pressure, she's really very healthy and had a clean echo, etc. All of her other scans were clean as well (chest, pelvis, brain, etc). I'm just on my knees hoping this is the right approach. I read as much as I can and I ask as many questions as I can, but I'm not an oncologist and I was trying to believe that they know best because that's the only thing that I feel like I can do now. :-( As I mentioned earlier, after the sodium issue, the oncologist was leaning towards surgery first and chemo later, but the surgeon and my mom lean towards feeling if they have to do chemo (which they do if she wants to survive), they should do it now to lessen the surgery. And honestly, I don't know what's right. I get the feeling the oncologist is not a hot shot type willing to overlook risks and she's trying to be very careful, but maybe there are some risks you just have to deal with in this type of a situation if you want the best chance at a good outcome. For all I know, we may hear from her on Tuesday and she may say nope...still want to do surgery first. I guess it all depends on her conversation with the surgeon and the nephrologist.

    I am feeling very scared about all of this -- especially after reading some of your worries above. Believe me...I am worried sick about what the right decision/plan is. But with no time to travel anywhere for more opinions, I'm afraid we're at the mercy of the team we have and just truly hope everything goes ok no matter what is decided.

  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2017

    Camille, a second opinion place should be able to get your Mom in within just a few days. The fact that her onc was leaning towards surgery first is a bit of a red flag for me. Your Mom needs an onc who specializes in TNBC.

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