Androgen Receptor Testing & Treatment

thanks Hope and Hummingbird. It is very encouraging to hear positive results hummingbird. I'm hopeful your new treatment gives you great results

well I met with the clinical trial team this morning and I'm now sitting in chemo getting my old treatment...ugh. I was signing the final trial paperwork and the nurses were going over the paperwork with us and I would need to understand I couldn't drive while on xtandi. I can't make that kind of commitment ..I don't drive a ton anymore but at times I have too. Xtandi can causes seizures especially during day 31-100 which in itself is very concerning. Plus depending on your state a seizure of any kind can make you loose your drivers license. My son is an epileptic and we go through this with him all the time. So the team is going to contact the manufacturer and see why this paragraph was in the consent and how much we need to worry about this issue. I'm saddened because I think this was a good treatment choice for myself.

So my question comes into play ..did you all get this same warning for those that were in a trial? Hope I don't think your in a trial but did they warn you of the seizures?

So I'm sitting here in chemo getting my old treatment while they figure this out. We tabled everything for two weeks

Kimber - My MO did tell me and discussed with me the chance of seizures with Xtandi. I was very concerned about driving but she never told me not to drive. So, I had it on my mind and I did avoid long trips - but I drove locally the whole time. I had looked at the data from the trials with men who took Xtandi for prostate cancer, and the incidence of seizure was very small. None of the women on trial with me experienced a seizure. I don't recall anything about driving in the consent.

Hi Kimber, I read your consent form and then I went and dug out mine from my trial. Unlike yours, mine did not specifically mention driving and swimming. It did say that seizures have been reported, about 9 in every 1000 people during treatment with Enzalutamide, and I should avoid activities where a sudden loss of consciousness could cause harm to myself or others. Since I was not told not to drive, I took the chance even though the slight risk of seizure was something I worried about.

These are difficult decisions and I understand your concern and disappointment. Good luck, keep us updated.

Thinking of you too, Hope. How are you?

I am so sorry you are still under the weather. I looked up se's related to Xtandi and fever wasn't listed, although fatigue is prominently mentioned. So it may be some sort of bug which hopefully will decide to go somewhere else very soon.

Please know you're in the thoughts of so many of us, and we hope that the nausea and malaise will disappear very soon!

With a warm hug!

Hope, are you still on Ibrance, or did you stop that? Just wondering, because some of your current issues certainly are listed as SEs for Ibrance.

I'm so sorry your having such a rough time of it, Hope. Quality of life is such a balancing act and I'm always careful to realize we each have our issues that make treatment to much. Awesome news on your markers not increasing..thank goodness for small blessings.

I can't believe after everything I put into this trial..I may never get pass GO so to speak. I spoke with one of the nurses last week and it is now with legal she said whether they can remove that clause and signature needed for not driving. I think she was mostly calling to see if I'd changed my mind on my commitment to the issue. I haven't they sent me some more things to read up on it and I'd love to try the drug if possible. I met with them again on the Monday after Labor Day . I did another cycle of Navelbine ,herceptin and Perjeta since my tutors are actively growing now.

Hope feel better

romansma, I am not sure where your pain is, but was wondering if u have a radiologist oncologist. My hips were hurting so bad, & I was told my bone mets was increasing in my skull, which would make me no longer eligible for Palbociclib/faslodex trial. I have all scans sent to my RO, he called me in & offered radiation 2 times per day to affected sites. My MO doesn't agree with him, but I trust his 30 yrs experience. My MO was shocked that I had no radiation burns to skin & I no longer needed oxycodone for pain. I did go through some bad withdrawal symptoms from not needing pain med

Hi Romansma. I'm feeling great on Pablo, no se at all which is so wonderful - thanks for asking. A few new aches; I have an appointment with my MO tomorrow and I'll see what she says as far as scanning. One of my tumor markers has doubled at my labs a few weeks ago, so I'm hoping it's not related to progression. I'll have labs again tomorrow.

I am so sorry to hear that you are continuing to have flu like symptoms and feel awful at times. Fatigue is one thing, but to feel that ill is terrible. Please keep us posted. I would think your MO is concerned about this?

Romansma, I know this sounds odd, but have you had opportunity to consult with your internal medicine physician? Sometimes oncologists focus mainly on cancer, and it is possible that another pair of professional eyes may be of help in diagnosing the cause. It's gone on a bit too long for comfort, and it may be opportune to go for a regular workup.

Thinking of you today and sending you a big hug!

Hope ..I can understand your frustration with wanting to help your husband. Sometimes it is hard to still feel useful but your husband will tell u I'm sure you just being with him outside meant the world to him. I really do hope you get some relief soon from those icky flu symptoms.

Every time I over do I get this wicked sore throat I'd swear I have strep till I rest back up. The crazy things are body does. I see the onc again in a week. This is my off week from chemo I'm looking forward to getting back on my feet before we tackle all this again. I may just sign the clinical trial paperwork..not sure. I'm having issues anyways with my eyes so not sure what my driving status will be soon. Definitely will ask about compassionate use too. Thanks everyone.

Big Hugs Hope..we are all rooting for you!

Kimber