Hello all! It has been a long time since I posted as my path has been plodding - learning to walk again, discovering even more bone progression, being pulled off Xeloda as it wasn’t working, more radiation and now Trodelvy.
The extensive bone mets are making physical therapy a challenge for sure and my forward progression seems so slow. I’m two Trodelvy treatments in and halfway through 10 radiation treatments. I surely would appreciate any advice from those of you on Trodelvy or any firsthand experience.
You all have been such a ray of hope during a dark period where I have questioned my treatment plan, my oncology team and sadly even my unwavering faith. I have felt guilty reading your posts and not responding or telling you I’m praying for you. Today, I’m taking that next step on this PATH OF LIFE to do whatever it takes to be the salt and light and glorify God with my long life by helping those I can by whatever gift I can use.
Thank you all for being so strong and supportive. I feel so blessed to be a part of this community. Know you are loved!
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Saltandlight
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Morning SaltandlightI've been on Trodelvy 4 months now .
My tumour markers have been a bit up and down but all my bone pains have disappeared which is fab. I haven't had many side effects, - just a bit of nausea at the beginning and constipation. Also a bit of weight loss which I combat with daily swimming .
Have to be careful with the white blood cell count as that's apparently one of the biggest side effects. But in general good news. Hope it goes well for you,. Yes we are blessed to be part of this community . It is very helpful and inspring.
Thank you for your reply! I’m experiencing all the side effects they told me I could expect and lost all my hair in one fell swoop last night. I’m glad to know they’re worth the good news! I wish you the best!
😄 I love the picture you posted. I am on Trodelvy now and have completed 34 infusions or 17 cycles. The start was rough with severe side effects. I had complete loss of hair, all hair everywhere, in addition to nausea, diarrhea, hives, rashes, swollen tongue, low white blood cell counts, low red blood cell counts, mouth sores etc. My care team responded immediately, lowered the dose and the side effects abated quickly. I am very happy with Trodelvy. My tumors decreased by 25% and I now carry a low tumor burden. The premeds given on infusion days take care of nausea , acid reflux and allergic reactions. The side effects are manageable and I use Immodium on needed days. I no longer experience nausea. I have no neuropathy. I drink plenty of water, organic juice, teas, mineral water and stick with a whole food, low in saturated fat, diet as well as exercise daily. I see family and friends frequently and am very thankful for this life extending drug. Trodelvy is working very well for me. My lesson learned is to not tough out any adverse side effects. There is no need to suffer. Notify your care team immediately should you experience severe side effects so that they may look into lowering the dose. Wishing you the best and success with this drug.
You should not feel guilty. Each progression is a blow and we fall down and have to work at picking ourselves up again. We all handle it and process differently. I only just started Tredolvy in May - it was a quick decision to go straight to IV chemo - as I had major progression on Orserdu.
I was not prepared and am still struggling, but the treatments have not been bad. I have no major dude effects. The hair loss was fast and hard - nobody keeps their hair.
I did eliminate one of the oral anti nauseau drugs as it made me feel very “out-of-it” and I reduced the Benadryl to only one tablet. There’s a Tredolvy Facebook group with lots of informative, helpful courageous women.
Thank you and prayers for your health my friend! I’m currently in the hospital now dealing with major GI issues and my team is questioning whether I should continue treatment!?! Can I ask what dose you are at? I am discouraged they want me to give up so soon!
Greetings Sister/Warrior/and yesss Over-comer🙃. I leave you with this prayer. When 2 or more come together in prayer, there is power in that prayer, and our FATHER/ GOD is in the midst. I/We pray for supernatural healing in your body/temple Amen🙏😇 Iron sharpens iron . GOD bless you sister, and your loved ones XoXo🙏✝️😇👍
Thank you-I believe when 2 or more come together there is power! May God continue to bless us all with His divine healing and guide these teams we trust!
I am on 100% right now. As I said it’s only been a few months for me. I have been told to never give up. Yes your body might need a rest and a pause. That’s not the same as giving up. You are very much alive.
I had a good 14 months on Trodelvy and I had the following:
Heat/sun sensitivity - had a few heat rashes if it was humid and I wasn't careful. My skin was always dry where it was exposed to sun as if I had a peeling sunburn
Digestive issue varied so I would recommend staying ahead of it - immodium and Zofran. I also chew gum or ginger chews to avoid nausea. Also took Pepcid for acid reflux once a day.
I have some posts about it so check them out. It's funny but after I move on from a med, I forget the "bad" parts. I am really just grateful to be here each and every day.
Thank you for your prayers! I will check out your posts. Hope they can get to the bottom of my GI/digestive issues with tests tomorrow. Certainly depressing having to be directed back to the ER for a two-day hospital stay but trying to stay positive and reach out to my prayer warriors.
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