ER-, PR-, Her2+ Roll call
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@catarina_fm almost done with herceptin! Congratulations! 🤞 For fast hair growth! I'm glad you are done well!
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hi all. Newbie here for HR- HER2+. Had my first TCHP cycle on Wednesday 7/9. I was feeling ok for the first couple of days but now starting to feel more nausea, stomachaches and lack of appetite. My mouth/tongue also feels dry and can’t seem to taste very much. Will this eventually get better? Do most feel better after a week of chemo? I’m living alone so I feel a little scared not knowing how to navigate through this.
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@blackcat5 hello!
I’m sorry to be meeting you through this forum, but we’re here for whatever you need.
What’s your diagnosis and age?
Chemo isn’t easy, but you won’t feel bad all the time… your body recovers between infusions. For me, the worst days were around days 4 to 10, then I’d feel much better.As for tasting things, unfortunately in my case I had problems with that throughout the whole chemotherapy. There were very few days when I could taste food normally. But you’ll find ways to cope with everything, you’ll see.
It’s not easy living alone during treatment… do you have friends/family who can give you some support?
I wish you lots of strength — you’ll see that it’s over faster than you think… now that I look back, it feels like the whole process went by in the blink of an eye.
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hello @blackcat5. So sorry you are on this crazy train but you are on the right place. I always felt worst days 4-10 and really got to feeling better just in time for my next treatment. My side effects changed over time but everyone does react differently. Like catarina, I do hope you have a network to lean on because you may need them. This group is a lifesaver because THCP is different than some others with different type of BC has a different experience. We are here for you. Take your nausea meds even of you just have a whiff of nausea. Your tastes will change amd your mouth may hurt. Do your best to stay hydrated. Get fluid infusions a few days after treatment if hydration is hard(i had to). Come to this forum anytime you have a question or concern and we will help you. Sending you love and prayers. D
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@blackcat5 hello, so sorry you have to be here but glad you found this group! A lot of us are on the end of treatments, but there are a couple who post that are in active treatment. But we will be so happy to answer any questions you have in this journey!
Dry mouth is very common. Make sure to drink tons and tons of water. I had mouth sores with my first two treatments and it was like the inside of my mouth was sticking to my teeth, rubbing and causing the issues. I had to get a prescription for Magic Mouthwash and that fixed the problem. I also would rinse my mouth several times a day with salt water.
I started taking Lactoferrin early in treatment. It was recommended by my care team to help prevent "metal mouth" where everything would taste like metal. I didn't have that issue, but I did have a few days where things tasted weird and had a weird texture. I generally would only want cold and/or creamy things a few days after treatment. I ate a lot of yogurt, fruit, peanut butter. With the mouth issues, I avoided crunchy things for about a week after treatment because they seemed to irritate my mouth.
Like @catarina_fm mentioned, by day 10 post chemo day, you start feeling a lot better. If you are having stomach issues, I would have D about 5 after treatment. I would take immodium before each meal from day 5-8 and that seemed to do the trick. I didn't have issues with nausea until about treatment #4. I had been prescribed a couple of anti nausea meds that i had to take at that point. I did find that making sure I ate something every couple of hours helped a bit. Keeping something on my stomach seemed to help.
Again, I'm so glad you found this group. It's a great bunch of ladies!!! I am sure living alone is making it seem a little scary, but I will try to watch for any posts you might make and answer as quickly as I can. We are here and we know how hard this is at times. But the first treatment is hard because you are not sure how your body will react to the treatment. Managing the week of chemo does get easier. Big hugs to you!!!
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thank you @catarina_fm and @djschmidt1. It’s nice to hear from people who have gone through this already as I feel like I have no clue. I do have a good network of friends who are there to help and I’m getting better about asking for things. Thank you both for the warm welcome
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I'm 12 years out from recurrence, so some of my treatments may no longer be current. I did have TCHP before surgery, but it didn't get all the cancer. So after surgery I had to deal AC chemo and then radiation, along with herceptin for the rest of that year. I live alone with no family near & really no support group. I drove myself to both chemos & to radiation every time. Fortunately I was old enough to retire so I could sleep when I wanted to.
Try Biotine for dry mouth - either spray or lozenges. I still keep some on my night table.
Good news is that my worst side effects were on days 3-5 and I gradually recovered before the next infusions. I did loose 25 pounds. Unfortunately I have gained most of them back. All my hair came back (except under my arms - no great loss). I have some residual chemo induced neuropathy in my feet and mild truncal & breast lymphadema, but mostly I can do whatever I want with no major problems.
Thank you to everyone here for keeping up the conversation about HER2+. I don't post often on this thread but I do read regularly and glad to hear your thoughts & advice.
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Thank you for your tips @grammie2 and @minustwo I just had the worst day yesterday. I tried eating some food and a few hours later I had severe stomach pains and eventually vomited and had D. Since then my stomach still hurts and I’m afraid to eat anything. I called the nurse and she thought that I had some bowel obstruction since id been constipated. She said I can eat some bland foods and can take Miralax in a couple of days once D stops. Anyone else also have bowel issues and how did you cope? Also what kinds of foods were you able to get down? Thanks all ❤️
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@blackcat5 so sorry to hear you’re having gastric issues. Most of us have had diarrhea through treatment. I went back and forth between diarrhea and constipation. I survived on white rice, egg noodles, crackers and fluids. For me food had little appeal and it did help the nausea to eat. I had what i described as indigestion from my throat to bottom. I was given a strong form of pepcid and took that throughout. It does get easier to manage as you go, however do know chemo has a cumulative effect so you will become more tired, might have neuropathy and muscle pain. The diarrhea at first was brutal but I promise you will get past it. Praying for you.
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Hi ladies! I hope everyone is doing well. I did receive an update yesterday on Berta. She still has the lung "leak" and it is causing swelling in neck and face. It sounds like they have put small slits to help let the air escape but doing it slowing to lower infection risk. The gallbladder issue has stabilized, but was told her liver needs to start improving. Still looks jaundiced. They are saying the leak in her lung will not improve as long as they are forcing air. They said she was taking in 40% help on oxygen and she will get nervous if they try to reduce the machine. Her communication is only head nodding. I had hoped that the update would be better. They are working on getting her moved (again-I think we've missed a couple of moves as they said she had been moved to 5 locations including her current one). The big thing I got out of the update was she is still fighting and being strong!!! Keep praying!
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@blackcat5 I'm sorry about the D and upset stomach! Sounds like you are fairly young like most on this thread.. your youth is a superpower, keeping your body resilient though it may not feel like it right now. Im hoping you have quick rebounds throughout this journey.
@grammie2 thank you for berta's update. I was thinking of her today. 🙏
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@blackcat5 hello, how have you been feeling? Have you improved a bit? I didn’t have stomach problems or diarrhea, and I only really felt nauseous with the AC; with the THP I didn’t feel any nausea. I always ate all my meals normally, just avoided spicy food. Even so, I lost about 4 kg during treatment. I think it was more because I lost a lot of muscle mass (I used to do a lot of sports and I’m trying to get back to it). I hope your body gets used to it in the meantime. I had a lot of problems with bleeding from my mouth and nose, and that was what I found hardest. I used to apply nystatin, but it didn’t help much… Even so, you end up improving and having good days in the middle of all this, you’ll see! I didn’t have diarrhea, but I did have severe constipation (but only in the first cycle). I don’t know which is worse… The good part is that it all passes! Try to eat well so you can get through all the treatments properly and finish on time. It will go by quickly. stay strong!
@grammie2 thank you for the update, I think about Berta so often… I really can’t wait for this to be over, it must be awful for her and for the family, with her being aware of everything… I really believe in her recovery!
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hello everyone
I’m the one who started this thread about 16 years ago and just come back to tell you that my mom is doing really great after all these years. For the new members I just can tell that keep on going You all can be the same as my mother.
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@nevo84 thank you so much for your words, it’s wonderful for all of us to read something like this… All the best to your mother! Thank you for coming here to give us hope. A hug, and may everything keep going well for you! 🍀🌻
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@grammie Thank you for the updates on Berta. Hoping she recovers soon.
@blackcat5 I'm so sorry to hear. Maybe you can ask your oncology team to remove the carbonplatin from your regimen? I'd think THP alone would be sufficient. For the Taxol, maybe they can switch you to Abraxane or low dose Taxol instead to ease the SE's. I'm on Enhertu and Perjeta only and am having the stomach pains and nausea as well. I've noticed that days 3-10 are the worse for me too. If you can drink boost or ensure, try those instead of eating solids. I'm giving compazine another try and it seems to be helping.
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Hi ladies. I wanted to find Berta's last post on her where she explained what was going on with her. My update today was not great. As soon as tomorrow they will be transferring her to a facility in a hospice situation. Her cousin explained that her lungs and liver were not improving with any of the treatments and only a transplant might prolong her life (but she doesn't qualify for a transplant). I know this was such a difficult decision on her families part. Her husband has not left her side this entire time! Yall I can't even fathom that kind of love and devotion.
I pray that Berta will be comforted in this transition and she will be at peace, and the same for her husband and children. I just couldn't hold back the tears and told my husband that I never got to meet her. His response with a tight hug was "You will". I can't tell you how grateful I am to have that blessed assurance from our Savior. Our faith was something that Berta and I did discuss and I am so thankful for that sisterhood relationship we had even though we had never met in person.
I just can't tell you all how sad this makes me. While what happened to Berta is not common, so I hope anyone who reads this will understand that fact. And I can just about bet if Berta was able to talk with us right now, she would say the same…..that this is not the norm. Love and hugs ladies!
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oh no! @grammie2 I was concerned about this as her updates have been disappointing. I am glad to know I will meet her in heaven as well. This is just totally heartbreaking. The Lord be with her and her family. This is so very sad and has me weeping. Thank you for sharing her updates.
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This makes me really very sad, girls 😭 Deep down I always had hope that some recovery was possible. Lately I started to get seriously worried about what you @grammie2 were describing to us, but I never wanted to believe the worst. I hope her husband holds up and has someone with him now, he’s going to need it. Lots of strength and courage to the whole family. As for Berta, it was a pleasure to meet her and talk to her, and I only wish that she doesn’t suffer 🌼💟
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@djschmidt1 and @catarina_fm same here on what you both said. It seemed that she had one complication after another once the lung issue started. She just couldn't catch a break! I believe her daughter is close by and I'm sure with the current decisions, she is being there more. I just can't imagine how hard this is for all of them. I've been through two hospice situations with close family members and it is just so heartbreaking!
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Oh no! We a so sorry to hear about Berta and will be holding her close to our hearts during this difficult time. Thank you for sharing @grammie2
The Mods
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All I can do is think about @beekaycro24. I am holding her in my prayers. This is such a reminder of how sweet life is. We are all sisters here even though most of us have never met. It’s just a club we never wanted to join. Sending prayers for all going through treatment now, and my warriors who have already gone through it. ❤️
@grammie2 let me know if we can support Berta or the family in any way.
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Our sweet friend has gained her angel wings, with her husband, daughter and son by her side.
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💔💔😭
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Such sad news about berta. 🙏 That her family finds peace and strength. Though we never met, her light touched us all.
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Good morning everyone! Berta's daughter reached out this morning and sent me this to share with everyone. I'm copying and pasting the message:
Mom spent the last 2 months in the hospital fighting double pneumonitis caused by radiation and the Kadcyla drug she had begun taking. She had a small cough that turned worse within a week and then was intubated about a week after going to the hospital for that. She transitioned to a trach and was awake and coherent, but with no ability to talk or move much. Her lungs had become so scarred that there was a slim to zero percent chance of her recovering and being able to come home. In the end, she was agreed that hospice was the best choice for her. She was tired, her body wasn’t showing signs of improvement, and she had begun to have pain. We removed the ventilator from treatment yesterday afternoon and she stuck with us for about 30mins before peacefully drifting out of this world listening to Free Bird with the sun shining on her face. It was the perfect ending to her beautiful life. Please share with any groups you were in, I know she enjoyed that support you all provided to each other. And give everyone the reminder: go to the doctor for every little thing while you’re in treatment. A small cough can end up being much worse than you think.
Hugs to each of you!!
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@grammie2 thank you so much for all the updates you gave us over these past two months. It feels like I can’t even believe it 😢 We didn’t know each other in person but we’re already like friends, wishing the best for one another, and it hurts to know that one of us is no longer in this world. Berta was such a strong person, always cheerful. At least it’s comforting that she didn’t suffer much and passed away peacefully ⭐️ Wishing a lot of strength to her family.
Take care, everyone 🌻
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Me again. So Berta's daughter told me she would be getting something together for her Mom so I'm going to try and share the info but not sure how the links will post (and I hope they are allowed in this forum).
Mom’s Celebration of Life will be held this Saturday, 7/26 from 12 - 2pm at The Winder Woman’s Club - 15 W Midland Ave, Winder, GA, for those traveling from out of town.We will have light refreshments and will be jamming out per her request. Bring your bestBerta Crowememories, we are ready to hear all of your fun Berta stories. In lieu of flowers, we are asking for donations to be made to the Breast Cancer Research Foundation in her memory.https://give.bcrf.orgI would give anything to be able to go, but I'm committed to dog sitting for my son's elderly pups. Tomorrow is Berta's earthly birthday. She would have been 60. And that is just way too soon!!!! I am working on a Susan B Komen "Walk Where You Are" event in October and I plan make Berta part of my fund raising. I so wish we were all closer to each other and could do an event together!!
Editing to add the obit that her daughter sent me:
https://www.dignitymemorial.com/obituaries/winder-ga/delberta-crowe-12462093
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Just saw berta's obituary website. So glad that she was surrounded by her loving family. Thank u for sharing
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Hi ladies! This group is really quite these days and I pray that means everyone is doing well!!! Since completing treatment and making it through my first mammo follow up, I just felt like I need to do something for folks going through BC. Two of my local medical facilities are connected with Susan B Komen. I decided to start a team in their You Are More Than Pink Walk - Walk Where You Are. The national event date is October 25. The beauty of it is folks can join teams from anywhere - and walk where they are. Just got it going last night. Tears came to my eyes when Berta's daughter was one of the first ones to donate. If anyone is interested in starting their own team or even joining mine, let me know. I just feel so blessed to be where I'm at and want to help make a difference. Yall have a good weekend! Hugs!
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