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ER-, PR-, Her2+ Roll call

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  • Hi Girls!
    My sister is on day 14 after her 3rd course of chemotherapy. She's starting to get a little more tired, and the metallic taste in her mouth is getting worse. She's managing, but now she has an abscess in her tooth. She's been prescribed antibiotics and is also using Etol for the pain. Her blood tests for the 4th course will be checked next week. I hope she can tolerate it better. Has anyone else experienced dental problems during chemotherapy? By the way, about 10 days after her 4th course, she's going on a seaside vacation with her oncologist's permission. I hope it will do her good, because she's very excited about it.

    That's the situation for now. I love you all.

  • grammie2
    grammie2 Posts: 408

    @myoldersister oh wow, a toothache on top of chemo SE's! I'm so sorry! I didn't have any issues but I think it is very common. And yes, a vacation sounds like great medicine!! I hope she will feel better and enjoy!

  • catarina_fm
    catarina_fm Posts: 176
    edited June 17

    Hello girls! I stopped by to see what's new 😊

    @djschmidt1 It's great that you found a physical activity you really enjoy! I exercise too, and I think it's a huge help in giving us more energy for everyday life. My doctor is always saying that exercise greatly reduces the risk of recurrence and osteoporosis, and she has always encouraged me to stay active. I currently do body conditioning classes, cycling, and strength training three times a week.

    @stellabys I hadn't met anyone with HER2+ cancer who hadn't received Perjeta treatment either (It didn't cause me any side effects at all, neither Herceptin) so it's interesting to see these differences. As for radiotherapy, in my case it wasn't too difficult. Nothing compared to chemotherapy, which was tough (I also had AC chemo, not only TCHP because my tumour was huge and I had nodes involved). My skin became very sensitive towards the end, but it improved quickly. Definitely use ice on your hands and feet! I only used it on my hands and didn't develop any neuropathy. For my feet, at the public hospital where I was treated, it wasn't easy to use ice, so I wore compression socks instead, which can also help reduce neuropathy. Even so, I developed a mild neuropathy in my feet, but it has completely gone away now. As for hair, just like

    @grammie2 , I ended up with permanent alopecia due to chemotherapy. However, the minoxidil treatment is giving increasingly better results. Still, I'd rather have this than neuropathy.

    @myoldersister a big part of your sister's chemotherapy is already behind her! You'll see, the rest will go by in no time. What bad luck to be dealing with dental problems 🥺 I think it's quite common. I didn't have any issues myself, but my oncologist told me to have a dental check-up before starting treatment (although I already go every year) because dental problems often arise during chemotherapy. I think it's great that she's going on holiday! Even during chemotherapy, we deserve to enjoy ourselves 😊 As long as she's careful about sun exposure, I hope she has a wonderful time.

    I'm keeping my fingers crossed that all the girls currently going through treatment are doing well, and that those who have already finished continue to enjoy good health 🍀🤞💐🌻

  • snm
    snm Posts: 266

    @myoldersister a seaside vacation sounds lovely! I recall when I was recovering at my bilateral mastectomy that all I wanted was to feel like normal person again even though I couldn't use my arms. Luckily my neighbor helped me out of my feeling sorry for myself funk and took me out for lunch. She helped open doors and remove my winter coat and helped with my chair and had a normal conversation about our kids- little things that helped me tremendously! I wish the same for your sister!

  • Hi everyone, I'd like to give you an update.

    My sister is back from vacation, and that's great. She'll have her 5th chemotherapy session on Tuesday. I hope these medications lead us to a happy ending, and to everyone who's been through this.

    We're praying to hear the words, "Everything is fine, there are no signs of illness," during the check-ups.

    i hope you all doing well.. Love you!!

  • My sister has reached the limit of her patience by the fifth round; she wants to eat, but she can't manage to eat as much as she’d like because of nausea and a throat that’s raw from the medication. This is taking a mental toll on her.
    
    Were your final rounds this difficult, too? What would you recommend?
    
    Best wishes, ladies.
    
  • My sister has reached the limit of her patience by the fifth round; she wants to eat, but she can't manage to eat as much as she’d like because of nausea and a throat that’s raw from the medication. This is taking a mental toll on her.

    Were your final rounds this difficult, too? What would you recommend?

  • grammie2
    grammie2 Posts: 408

    Hugs and hugs!! My oncologist told me from the start that a lot people make it to #4 and quit. She said that there are other options if you just can't complete them. Do they think the culprit is the TC? Some are just way more sick than others and some tolerate it better. I didn't have nausea until #4 but it would only last a day or so. I was able to get a prescription for Magic Mouthwash for mouth sores, but you swallow it if you have throat issues. This happened my first two, but not after that.

  • catarina_fm
    catarina_fm Posts: 176

    @myoldersister I had a different chemotherapy regimen from your sister's because my case was urgent and advanced. I had 4 cycles of AC (red chemo) and 4 cycles of THP. AC made me terribly nauseous, it was awful. I felt poisoned and completely drained, but I didn't have problems with mucositis and the like.

    Because I was already weakened when I started THP (due to the red chemotherapy I had beforehand), I suffered a lot with mouth sores, my nails fell off, and it was really bad. However, my last chemotherapy session was actually the easiest one, and I met other people who said the same thing!

    For me, things kept getting worse with each cycle, but the last one was the least bad of all. I think part of it was psychological too, knowing there was no more chemotherapy ahead.

    If I can give one piece of advice, it's this: encourage her. There's only one session left, and then she'll be free! She should follow the treatment plan as prescribed, because it's the best way to help prevent recurrence. Of course, if she decides not to go ahead with the last session, it doesn't necessarily mean things will turn out badly. But I think that if she's afraid it will be worse than the fifth cycle, that may not happen at all.

    Stay strong. It's hard, but it passes. It's just one more round of suffering, and hopefully this one will be easier. It's only a few days! If she can't manage solid food, smoothies and cold, fresh foods can really help.

    I'm rooting for her!

  • grammie2
    grammie2 Posts: 408

    Happy Friday ladies! Hoping everyone is doing well. How's everything going @myoldersister ? I came by to see if there were any new posts so thought I'd do an update. This is my 4th month on low dose oral minoxidil and I think I am finally seeing a little difference. I do see a tiny bit of fuzz near my ears like where sideburns would be and down towards my jaw. But honestly, I think it was that way even before chemo. My eyebrows are thickening up too.

    I broke down and am trying a GLP-1 drug to see if I can't lose some of the weight I've gained. I just did injection #5 and things are going well. Minor and minimal SE's, but I am still in the stage where it is increased every 4 weeks as long as I am tolerating it well. I've lost a little over 9 lbs and I'm actually glad it is gradual and not fast. I think it is much healthier to lose gradually. It is making me think about what I eat and am trying to eat more healthy foods. My hubby actually started doing it as well so it's nice to do it together. I was very hesitant to try it after chemo. I didn't think I wanted to put more drugs in my system. But being overweight is a common denominator in a lot of recurrences, so I gave in hoping it would be beneficial in more ways than one. My MO's assistant has been taking it for a few months and they actually encouraged it.

    Hope everyone has a great weekend! Hugs!!

  • chocomousse
    chocomousse Posts: 123

    For those having a difficult time with Enhertu, I just read about the Demether trial which proposes giving Enhertu for the first 6 infusions and if the response is good, switching the patient to Phesgo. The purpose of this is to reduce cumulative toxicity and ILD from Enhertu. Although hindsight is 50/50, I feel like this treatment schedule would have worked for me and could have spared me the stage 2 ILD.

    @myoldersister Instead of quitting treatment altogether, could your sister ask her doc about alternative treatment options like Phesgo alone? The Taxol with the carboplatin is exceptionally hard on the body and research shows that TCHP isn't any more effective than other treatment regimens.

  • Hi girls, I'm here for an update!

    My sister is having her 6th cycle today. She spoke with her doctor and there will be no carboplatin in the last cycle and she will reduce the dose of taxol.

    We are hopeful and happy. Hopefully we can start routine check-ups with a clear result and I can come by occasionally and tell you that she is doing well. @grammie2 I think you are beautiful in every way :) I'm glad you're doing well.

    @catarina_fm and @chocomousse I am grateful for your advice and support

    Love you

  • Meanwhile, my sister received IV fluids yesterday and today. The 6th course of treatment really exhausted her energy due to the cumulative effect.

    Although the IV helped somewhat, she still can't drink water or eat food. She's experiencing loss of taste, numbness in her tongue, and diarrhea, causing some discomfort.

    After the last course, we're now expecting her to recover and start radiotherapy on September 11th.Hoping that the process will be easier from now on, I wanted to ask you about your experience after the 6th course of treatment.

    How was it?

    Best regards.