Does it get any easier?

Options
Saextro
Saextro Member Posts: 4
edited July 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hi all. I'm not sure where to post this but I feel like I just need some words of encouragement. My mom was diagnosed with stage 4 breast cancer on December 19, 2017. She is 48 years old. She has Mets to her brain, bones, and lung. She also has a pleural effusion. She started off doing hormonal therapy with ribociclib/letrozole until the ribociclib gave her a terrible rash. She took about 3 weeks off treatment to get the rash to clear up then she started up with ibrance and continued taking letrozole along with radiation to her brain for the brain Mets. Once she completed her radiation, she somehow weened off the steroids too quickly which resulted in major confusion and episodes of her repeating stuff she saw and/or heard on tv which we later found out were a type of seizures. The neurologist we saw told her no more driving due to medications and her mental state (which has since improved drastically) My dad is a small business owner and works mon-sat 8:30-6 and I work roughly 40 hours a week. This resulted in me having to coordinate all her appointments for my days off which definitely takes a toll on me. She is getting her pleural effusion drained roughly every 3-4 weeks. An updated pet scan in April showed that all the other spots have gotten smaller but the pleural effusion keeps coming back and she had new small spots in her liver so her doctor decided to have her get a port put in and she now gets treated with abraxane. Tumor markers keep going down which is great. Still not driving. My main concern is that she is so so weak. Spend most of the day laying on the couch watching tv. The pleural effusion seems to be coming back slower than usual which is promising. But she is just so weak and her legs ache. When our 12 pound dog lays on them it hurts her. Has anyone experienced this? And do things get easier? I'm hoping that by my summary of the past 8 months gives a good idea about how hard it's been but also i think treatment seems to be working. Her spirits are high which is great. I don't really know what I'm getting at with this post. Maybe just needed to let it all out haha. Thanks for reading if you've made it this far. This board really helps ease my mind.

· Share on FacebookShare on Twitter

Comments

  • Micmel
    Micmel Member Posts: 9,450
    edited July 2018

    I have been on abraxane and it can be tough on someone. It make me confused at times. Please encourage her to take murilax every single day, abraxane and the pre meds will bind you right up and that is quite painful. I went through 9 treatments and it was tolerable, but each time.a little different. Neuropathy was an issue for me towards the end. Thatvhas improved greatly. But it did a good job and beat back some cancer so my liver could be operated on. They removed my liver tumor. And I had a full mastectomy and node removal. So in my case abraxane worked wonders for me. I am now in nead and I am also considered NMD=no measurable disease. And only in the bone ... so it can happen. Just can't ever give up. Even in the days you feel you must. amazing things can happen. Hold on to those you love and cherish. Love is power. Always have her eat slowly during the infusion...... also slow down the infusion drip from 30 mins to 45. Makes a big difference. Take Tylenol and Claritin before every infusion. Those were the tricks that helped me. I wish you and your family the best wishes. Always. Much love ~M~ Also water with a strawberry or orange slice in it. Anything to sweeten it ever so slightly for her tastebuds. Good luck hun! ❣️❣️

    · Share on FacebookShare on Twitter
  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2018

    Saextro, sorry about what you are dealing with. And gosh, your mom is so young! Means you are quite young. It's a lot for you to juggle. Micmel gives some great advice. I think for the present, you must deal with what is, and that's not easy, as you are well aware. Are you an only child? It sounds like you are very much there for your mom, which is great, but you do need to schedule in some me time *without feeling guilt* about it. Even if you must hire someone for a few hours once a week to care for your mom, plz take a mental health break from all you are dealing with.

    I have no idea your family dynamics, but will kindly mention that you must be sure your dad isnt passing more onto your plate because he is having a hard time dealing with your mom's situation and is using work as an excuse to not be present. He, too, could delegate occasionally at work to be available a bit more often to help your mom at those appointments. You may need to gently assert yourself and make sure you're not shouldering more than you should be.

    My best wishes to you. If all your mom wants to do is watch tv, find some great shows to binge watch with her, get her a great pair of pjs and fluff up her pillows. ( In 2011, I bought a big screen tv when I started radiation because I knew I'd lay around all winter recovering).Try to be in the moment with her. Thats all you need to do. She is blessed to have such a caring daughter (son?) who cares so much to be there at her time of greatest need.

    · Share on FacebookShare on Twitter
  • pajim
    pajim Member Posts: 2,785
    edited July 2018

    Saextro, I have little to add to the above posts.

    The one thing I would suggest is that she talk with her onc about how weak she is feeling. Her onc could give some advice on whether that will get better over time or whether she should be in a structured exercise program.

    My concern for her is that if she doesn't get some strength back she'll lose it permanently. If it's just a question of time -- i.e. as the mets shrink she'll feel better like recovering from an operation -- then this isn't a worry.

    I can imagine that the pleural effusion is making it hard to do much of anything. There are further steps they can take but I'm guessing they're hoping Abraxane will solve the problem.

    I second MrsM's comment about needing time for you. You can't devote everything you have and you are to this. I know, it's your Mom. But you'll burn out fast. Are there friends, neighbors, a church? People who can take it in turns to go to appointments with her? Take her to the movies? That sort of thing?

    · Share on FacebookShare on Twitter
  • LoriCA
    LoriCA Member Posts: 923
    edited July 2018

    Saextro I'm so sorry about your mother but glad to hear that it seems like the treatments are working. If her doctor isn't addressing her palliative needs she should ask for a referral to a palliative specialist/team. They can help her balance the symptoms of the cancer and the side effects of treatment and meds to make her quality of life as good as possible. I won't promise you that it gets easier because each of our cases are different and we all respond differently to treatment but don't give up hope, my cancer spread so fast & did so much damage that for six months it was all I could do to get washed up and changed every day, and there were many days I couldn't even do that. I thought that was how the rest of my life was going to be. Then I slowly started getting stronger & set little goals for myself, began with walking, and now ten months later I'm in the gym lifting weights, walking/hiking, swimming, and leading an active lifestyle again. I still have some pain, but it's being well-managed and I can honestly say that my life is good.

    My husband is also a small business owner who works 6 days a week and we have no family in the area. He missed so much time the first two months taking care of me until we realized that we needed help handling things. Self-employed people understand the reality that too much time away from the business can mean not being able to afford your mortgage payments, health insurance/medical expenses, and putting food on the table. My husband attends all of the important appointments with me and he does things like stop by the infusion center to bring me coffee and a donut, but I know that it's not realistic for him to be at all of my routine appointments if we want to keep eating and keep a roof over heads (not to mention pay for my treatment). At the same time, you can't spend all of your free time doing it because you are going to burn out! You need help. If you can't find some of her friends who are willing to help take her to appointments, the American Cancer Society offers free rides to treatments via their Road to Recovery Program https://www.cancer.org/treatment/support-programs-... and many hospitals and clinics are participating in Uber Health to get patients to treatment https://www.uberhealth.com/ You can't do it all by yourself and you should take advantage of all the available resources that are offered for cancer patients.

    My best wishes to both of you!

    · Share on FacebookShare on Twitter
  • Saextro
    Saextro Member Posts: 4
    edited July 2018

    Wow thank you all for your kind words. I am 23 years old and I do have a younger brother who is 17 (doesn't drive due to bad grades but we are working on that). We actually got CT scan results today and it seems the spots in her liver aren't being contained by the current chemo so that's not the best news but I'm hoping the next will help. I feel like I made the situation seem worse than it is as far as me taking her, but all of your recommendations are great. I have arranged so that all her appointments are on Mondays and it's almost part of my routine now so i guess you can say I'm used to it. My dad handles all mom stuff on the weekends mostly so I am able to enjoy myself which is helpful. We have also started to grab lunch when we have some extra cash and I do like that we are able to spend time together, even if it is during a chemo infusion. But I will definitely keep all those recommendations in mind. I just pray so hard every night that my mother will still be around to experience life. Like my wedding, my future children, etc.. her and I are so close so this has just been so hard. Whenever I get sad about the possibility of losing her, she tends to yell at me and tell me to smile because she isn't going anywhere which always puts a smile on my face because I know she's fighting so hard. I have been encouraging her to get active on this forum as I think she would benefit from chatting with people who are going through the same thing so keep a look out for her lol

    · Share on FacebookShare on Twitter
  • terri-c
    terri-c Member Posts: 180
    edited July 2018

    Saextro,

    Cancer takes a toll on not only the patient, but the family as well. While I don't have anything to add to what has been said, I wanted to give you a virtual hug and tell you how wonderful you are for stepping up like you've done.

    · Share on FacebookShare on Twitter
  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2018

    Saextro, women often have a tendency to minimize the amount of effort they are putting into caregiving. I re-read your original post, and you mention the toll some of it is taking on you. So the stress is real. Its okay to admit it! I think its smart to address it, even if it only consists of venting on this forum. We are here for you. Yes, 23 is very young to be in your position! And tough for your brother, too. Don't give him a pass just because he's younger and male. Find a few ways to,guide him into being helpful and that way it lightens the load a bit on everyone. I'm glad you are reaching out to us for support. Many many hugs to you, your mom, your family.

    · Share on FacebookShare on Twitter

Categories