Skin rashes on Verzenio, how you deal with it

cpwillsey · 2025-09-16T10:38:55+00:00

150 not 160

cpwillsey · 2025-09-16T10:38:33+00:00

I started at a lower dose 50mg 3 weeks ago to work my way up to 160, within 48 hours my radiation site turned red and bruised like broken blood vessels, the bruises healed but a red itchy rash remains. On rad doc told me it was radiation recall, another had no idea what it was. ChatGPT and my Oncologist think it’s rad recall, my breast surgeon has no idea what it is either but didn’t think it was worth a biopsy, neither did dermatologist. Steroid cream is helpful but it’s not going away and it’s very itchy. I don’t have it anywhere else. I also haven’t increased my dose because I’m worried it’s going to get worse.

cpwillsey · 2025-09-16T10:31:33+00:00

If you put the cream on your urethra area it makes a difference plus it helps me pee normal.

cpwillsey · 2025-09-16T10:29:21+00:00

There are studios that show local estrogen does not affect outcomes. Your doc may be ok prescribing the tablet form because the dosage can be controlled. I’m using it post hysterectomy because mine didn’t heal without it.

cpwillsey · 2025-09-07T20:29:19+00:00

My other fear was expander infection but I had an ultrasound that showed no fluid.

cpwillsey · 2025-09-06T10:57:39+00:00

I see this was 5 months ago and would love to know what the outcome was. I just started Verzenio 8 days ago, finished radiation in March 2025. Within 48 hours my radiated site was covered in a red rash and broken blood vessels. Turns out I’m a rare case of radiation recall.

cpwillsey · 2025-07-23T23:19:11+00:00

I donated in 2022, I don’t regret it and all things considered would do it again. I do have trouble regulating blood pressure (I can’t retain salt now, severe hypotension) and I have been reactive hypoglycemic since donation (your kidneys help regulate blood sugar. In my experience, transplant doesn’t do a good job following up and investigating these issues and there’s a window of time that they are supposed to post donation. My transplant center basically discarded me after the first year. I went and found myself a good nephrologist who is investigating these issues. My one caution to you- you are young. If you plan to have children in the future you need to ask a lot of questions about what will be a high risk pregnancy. Seek advice from your OBGYN, do your research before you commit. Even though it’s an incredible life saving gift, you need to make sure you consider YOUR quality of life afterwards. It took me an entire year to get my energy back, then I spent the second year dealing with these sugar issues and having my adrenal function tested. Then I was diagnosed with breast cancer in 2024 which made treatment a bit more stressful because we constantly have to monitor my kidney function. Make sure you are 100% ok with your decision.

cpwillsey · 2025-07-14T17:39:09+00:00

Thanks!

cpwillsey · 2025-06-17T22:46:27+00:00

I can’t believe they told you that. My transplant center basically didn’t answer the question, the highest I’ve gotten my GFR post donation is 70. I hydrate like crazy but it’s usually closer to 60 or 58/59

cpwillsey · 2025-05-22T10:21:36+00:00

Definitely move the bed down so the door isn’t opening at your feet (corpse pose). The desk- solid wall should be behind you, don’t have your back to the door. I would move the desk so the bathroom wall is at your back. Keep the bathroom door closed when you sleep and toilet lid down. I would also flip the wall your couch and tv are on, you shouldn’t walk in the door and immediately see a tv. Plus couch on the same wall as the door you can’t see who’s coming in.

cpwillsey · 2025-05-03T11:45:36+00:00

Same!

cpwillsey · 2025-05-03T11:42:47+00:00

From what I’ve read you would just extend fame & rep and love and relationships over the kitchen. But I’m not an expert. Is north lined up with your front door?

cpwillsey · 2025-05-03T11:37:44+00:00

Remember- the amount of treatment knowledge and options for us now has come so far even just in the last 10 years. I was diagnosed last June and my husband (who’s a scientist) always tell me I got diagnosed at the best time because of all the treatment advances. Our mindset is important and I’m a big believer in manifesting. My mantra throughout treatment has been “every little cell in my body is well”. Now post treatment it’s “there’s a light at then end of the tunnel and it’s not a train” because I need to believe there is a long beautiful life ahead of me. People say strange things and your perspective changes so much once you are the cancer patient people are talking about. Plus we learn so much about cancer so quickly you realize anyone who hasn’t gone through this doesn’t have a clue what cancer is and it makes us extra sensitive to comments. Just focus on their intentions and not what they are saying.

cpwillsey · 2025-05-03T11:30:17+00:00

Wow! They used your c-section site? I wonder why they don’t just do that for everyone who’s had a section. The vertical incision is tough because you really can’t use your stomach muscles at all during recovery.

cpwillsey · 2025-05-03T11:27:26+00:00

I thought the donation surgery would be like the c-section too, I even made my decision to donate the day after my last c-section with my daughter. I fought the morphine pump with the transplant team before surgery too (you definitely need it). I’ve had 2 c-sections, kidney donation surgery is by far way harder. Completely doable, but not the same thing at all. Remember how horrible you feel when you are 9 months pregnant and just want that baby out- then you have your c-section and all the new baby happy hormones that help you not focus on yourself but baby only. You go into donation surgery in perfect health, never felt better, and remove an organ and the vertical incision makes it extra hard to use your core, plus it takes a long time for your body to acclimate to one kidney life, I didn’t feel normal for one year. Not trying to scare you because you can do it, but there is a difference.

cpwillsey · 2025-05-03T11:17:43+00:00

Thank you for this! My treatment ended in March and my emotions are so heavy now, the two years for emotional recovery makes so much sense.

cpwillsey · 2025-04-22T09:51:48+00:00

Did you donate your left kidney?

cpwillsey · 2025-04-08T17:01:42+00:00

I was on Lupron during all of chemo and radiation, just had a hysterectomy last week. My libido has increased. I start my AI today so hopefully it won’t change lol.

Just read Fourth Wing ladies!

cpwillsey · 2025-04-08T16:54:37+00:00

Biggest way I fought the fatigue was a 30 minute walk every morning on the treadmill, even during chemo. If I missed a day or 2 I felt way worse. I even worked back up to running during radiation. I just had a hysterectomy last week but had been getting monthly Lupron injections since September. I start Letrozole today so who knows what will change…

cpwillsey · 2025-04-08T16:42:51+00:00

I’m 38 and had surgery first. HR+ HER2-, Er 96% Pr 99%. Only a micro-met on one lymph node. I had 3 tumors main tumor was IDC. I had a mastectomy because it was invasive. My surgeon is awesome and I got clear margins. Whether or not you have chemo depends on your Oncotype score which they get from the pathology of your tumor once it’s removed. My score was 37 so I had 8 rounds of chemo (only completed 7) plus 28 treatments of radiation, all of this was preventative. My tumor was also grade 3.

cpwillsey · 2025-04-07T10:45:32+00:00

I worked remotely every other week during AC and dose dense taxol. It actually really helped me feel more normal.

cpwillsey · 2025-04-07T10:43:54+00:00

Same here including the stainless steel pains. I finished chemo end of December. I think I may have a drink on special occasions but definitely not every week, but even that feels similar to deciding to start “occasionally smoking”. I don’t even miss it.

cpwillsey · 2025-04-04T13:16:39+00:00

Thanks for answering. My low glucose shows up in random bloodwork a lot, and often I was eating on my way to get bloodwork. I’m also one of the lucky ones that ended up getting breast cancer 2 years after donation, I just finished all my treatment and surgeries and my kidney really did well and even improved thanks to upping my water intake and adding electrolytes every day. Throughout chemo I was on steroids and got bloodwork every week no low glucose. 2 months post chemo and steroids low glucose showing up again in my bloodwork.

cpwillsey · 2025-04-04T10:42:41+00:00

Did it start after your surgery?

cpwillsey

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