De Novo Stage IV
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@snow-drop thanks so much for the suggestion. I put it in my notebook, along with Evista, which has similar estrogen receptor AND bone strengthening effects.
I am sorry to hear you’ve had progression and fatigue. I hope Xeloda will give you some relief despite any side effects.
Kind regards to all the de novo ladies in this thread.
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@snow-drop Hi! Thank you for the shoutout.
I’m really sorry for the progression. I hope Xeloda helps and you don’t have too many side effects.
I am about to have very heavy storms with wind gusts to about 55, so hopefully my husband tied down our RV very well. We have a carport over it, so that helps. I have gotten to see my grandson and daughter once so far.
I went today and signed all of the paperwork for my cremation. I had been procrastinating, but I don’t want my husband under a lot of stress when the time comes.
I hope everyone else is doing well.2 -
(((kbl))) hugs and prayers for you. I hope that you stay safe.
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@denny123 Thank you. All good. It’s still windy, but it seems we always get the storms in the middle of the night. I only woke up a few times gusts did get to 55. And we didn’t lose power. I was happy about that.
Met my hospice doctor for the first time. He is so awesome. All the nurses love him, and I see why. He spent as much time as I needed and is letting me try a new medication for my nausea. Once I have it and try it, I’ll say if it works or not.
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Dearest brave KBL, please stay safe, NC is dealing with strong winds and gusts, and SC is dealing with wildfires. what a world… and thank you so muck for your well wishes.
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I’m wondering if anyone knows anything about late radiation side effects. I suspect the PVT in my liver and the recent fatty-replaced bone marrow in multiple vertebrae are related to radiation-induced endothelial vascular damage (I know, it’s a mouthful), given the highest-ever radiation dose of 45 Gy in 15 sessions to my breast tumor. a couple of weeks ago, a well-experienced nurse at the infusion center mentioned late SEs or post-radiation damage when I was in severe pain above the radiated area and under my shoulder, she actually suspected nerve damage.
I’m desperately seeking ways to understand how to reverse or at least mitigate the damage, I’m spending all my active (!) time searching for answers, my MO constantly refuses to talk about it. any words of wisdom?
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@snow-drop Thank you. It’s still quite windy, but we did fine through the storm.
I’m sorry I can’t help with your question. I’ve never had radiation.1 -
Team De Novo Stage IV,
Just wanted to give you all an update on my wife as I've been a little quiet lately. She had an FDG PET scan last week and remains stable. Her tumor markers, although slightly elevated from normal range, remain steady and she is basically symptom free. Still on first line, still taking 600 mg of Kisqali 3 weeks on 1 week off. Her neutrophil count is always low, but above the 1000 threshold which would require lowering her dose or taking a week off. She's coming up on two years since diagnosis and we're hoping many years of no progression remain in her future.
Wishing you all equally good results with your treatments and scans.
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@bighubs Excellent news, and long may it last!
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@snow-drop I’m really sorry to hear of the progression. I hope Xeloda works wonder for you and the side effects are manageable. Sorry, I don’t have any knowledge or experience about your radiation question. I am doing alright, thank you for asking 🙂 just taking things day by day, the best I can.
@kbl I’m glad to hear your hospice doctor is so lovely. You’ve made an incredibly difficult decision for yourself and you need someone who will support you with the kindness and grace you deserve.
@bighubs that’s amazing news about your wife! I hope her treatment continues to work for her for many, many more years!
Hello to anyone I have missed! I read often but don’t often post. You all are always in my thoughts.
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I got my new port today! He put it a little higher than the other one was. I should be able to start back on Herceptin this Friday and hope to be able to get back on my Xeloda pills sooner than that.
(((KBL))) hugs and prayers
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@denny123 I’m so glad you were able to get a new port. I hope the issues you were having will disappear and that your infection has cleared.
Thank you so much for the hugs and prayers. I had a really good cry yesterday, which I could feel I needed for two weeks. I don’t cry often, but I always feel so much better when I need a good cry and get it out. I feel much better today.
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Hi all, It’s been a while since I’ve checked in!
@denny123 So glad to hear the port surgery went well! How’s it been since using it?
@kbl I’ve been thinking of you, sending hugs your way ♥️
@snow-drop I’m sorry to hear about the pain you were dealing with from radiation. I hope it’s gotten better?
@bighubs Amazing news about your wife’s stability, I love to hear it!
To everyone else I missed I hope everyone is doing as well as they can, thinking of you all ♥️
Not a whole lot going on over here. My trip to Mexico was amazing and I’ve been staying super busy since with multiple friends bachelorette parties / bridal showers etc. I’ve been a tad emotional watching all my friends starting their forever lives with someone while my husband and I are in a much different place mentally but I’m still honored I’m feeling good enough to join in on all the celebrations. I’m 31 so it’s to be expected this is happening to my friends but I guess it’s just a bit more in my face lately about how much this diagnosis sucks at this age 😅
But overall I’m doing well! My Signatera has remained negative and feeling pretty good side effect wise. Coming up on 2 years since my diagnosis which is crazy to think about!
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@jobbibo Great to hear from you and I am so sorry that you are so young! I guess that I missed your age in previous posts. But I am glad that you are feeling okay and able to go on vacation and participate in multiple events. You are young and strong, so that should help you to fight this battle.
What treatment are you on now?
My new port is great and I have had 2 treatments with it so far. It is amazing that I have not gotten sick afterwards, as I have for 3 years.
Denise
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@jobbibo Thank you for thinking of me. I’m glad you’re stable and able to do things, but I know the mindset is always changing. Even when we are doing well, it’s not something we can just forget. I’m sending hugs.
@denny123 So glad the port is working beautifully and you haven’t had issues. I can’t imagine thinking back on three years of issues and wondering why it took them so long to figure it out. I’m sorry it took that long but so happy you have relief.
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@denny123 Thank you! I’m still on my first line which is Phesgo (Herceptin / Perjeta shot) and Letrozole but then I’m also on the HER2CLIMB-05 trial where I have a 50/50 chance of being on either Tucatinib or placebo.
I’m sooo glad to hear you’re not getting sick afterwards now! I hate that you had to deal with that for 3 years but so happy that it’s no longer an issue!
@kbl Thank you, so true about it being something we can’t forget. How have you been feeling lately?0 -
@jobbibo I’m having good days and bad. I’m on medications to help with energy, then that constipates me, so then I take a Senna, then I’m taking Omeprazole, my thyroid pill, a Lorazapam at night for sleep to counteract the dexamethasone, and Reglan to help the food I eat to move down. Hey, but I’m not on any pain meds, so that’s a bright side. I’ve never taken so many prescriptions at the same time, but it’s all about comfort now.
I am still able to do some things, like I walked a mile today and went fishing with my husband last week. I also was able to have my grandson for three days.
Thank you for asking. Just looking at all the meds makes my head spin.
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@kbl I am so glad that you don' t have any pain and I couldn't walk a mile to save my life. But my left diaphragm is partially paralyzed and I get out of breath so often.
Keep enjoying life!
And you are always in my prayers.
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@kbl -I was thinking of you while traveling this weekend. I'm so glad you were able to have your DGS. I did a lot of walking this weekend, but never a mile all at once. That's great.
I had to laugh. We were going to walk about three blocks to get somewhere, but we ended up taking the car so we cound just go on from there. It was a lucky decision, because all three of those blocks were up a fairly steep hill. I don't think either of us would have made it. Lol
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@seeq Thank you for thinking of me. I hope you had a great time.
I did walk a mile up hills, but when we went to Amicalola Falls, there was no way. I didn’t even make it a mile, and my husband had to get the car and come get me. Hills are so hard, especially when you’re from Florida.
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@kbl and @denny123I was happy to hear you’re both doing OK. @jobbibo congrats on the two years. I remember when I reached that milestone and it gave me hope that I could be a thriver like @denny123. (I was diagnosed 5 years ago.)
Today I’m getting TPA in my port since it has not given a blood return the last two times that I had it flushed. Because my veins aren’t very easy to access after chemo, I like being able to use my port for blood tests, so I hope the problem is resolved today. It’s a little scary to think they have to use a drug that they give to stroke victims, but I know many others have had this done without any problems.
Speaking of hills, I’ve been walking down and up the hill our house is built into for the last several weeks, taking yard waste from the flower beds to the back of the property. It’s been really challenging since my broken leg from last summer is still healing. I have also noticed that kneeling, squatting and getting up from sitting on the ground is very tough to do now. I’m only 57, so I’m determined to try to get back to a healthier body, but as all of you know well, this is not easy.
I had a corticosteroid shot to my AC joint last week and I’m thankful that pain is much better, but I have some mild osteoarthritis in the shoulder joint as well. I wanted a shot there but the doctor wants an MRI first. One thing that was surprising to me was that my hot flashes got worse after the shot and I felt mild flu-like symptoms after the shot. That hasn’t happened with previous shots. Has anyone else had that happen?
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@cyathea I hope that the TPA works okay. When they were trying to figure out why I was getting so sick after my Herceptin, I decided to stop the Heparin flush and just use a saline drip to clear out my port.
And if it got clogged they were going to use something to clear it out. But I don't know if it was TPA.
I sure hope that they find a solution or just replace the port .
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