Flunked out of the clinical trial! I begged to stay on, but the protocol is that with a 1.4 x 1.0 cm lymph node on my paratracheal, SUV 7.5, I have progression and have to try something else. Oncologist dismissed going back on Ibrance after holiday, says that works for few people. (She also said I went off Ibrance because of a rash! That is false. How do I get her to change it?( Reports also say I had a physical exam, listening to heart and lung, and she has never done that.) I had Ibrance and Fulvestrant at first, worked well for 2 years, then she concluded that Fulvestrant failed. I wondered why she didn't say they both failed. I stopped both at the same time. I had a rash from Xgeva.
I was on the oral SERD for one year. She presented the options as letrozole oe exemestane as hormonal, plus abemaciclib (verzenio) or ribociclib as CDK4/6 inhibitor, or Xeloda as chemo. She chose letrozole or verzenio, and gave me no choice and little explanation. I kept interrupting her as she explained very slowly an simply as though I were two and had not learned anything here. I wanted more info, not what I already knew. Didn't work.
Starting at 150. She said diarrhea kicks in about 3 weeks in -- when I will be away. I can start Letrozole today, and Verzenio next week, when I have an appointment for "education." I am looking back at posts on people's experiences with those two. Ach, hair loss again. In the summer. My hair thinned badly on Ibrance, so I assume it will be the same.I pointed out to her that this tumor, on r. paratracheal, has not responded as the others to estrogen blockers. She said that doesn't mean this on won't work. I had zero estrogen on the oral SERD, yet this one grew, so I don't understand how another one can work better.
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TammyCross
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It seems to me that you need a new oncologist who knows how to treat patients with respect. I thought that a big plus of the American system was the freedom to go to whatever clinic you wished to seek second opinions....?
This oncologist cannot explain anything, but does a great job at treatment, I have been told, and I am an example.
But it is time for a second opinion. I got some advice on that here recently but cannot find my old posts and responses. I am thinking Sloan Kettering, and a couple of people had good experiences there. I don't think they gave doctors' names; that is what I need.
Hi Chris O,At the top of this post, click on your name. When you see your bio, click on Posts, and go down the list of your posts to one titled, "Second Opinion". Click on "Second Opinion" to read the replies you received to that post.
I am! I am planning to go for 2nd opinion at Sloan Kettering, with the possibility of switching. Also, I would like to switch to another oncologist at Columbia -- but I still need her guiding the Rx if I stay. She is smart but cannot talk to me and I can't talk to her,
I would agree with the others that you need a second opinion. An Oncologist needs to listen and if your records are reflecting wrong information then they need to be fixed.
I was on Verzenio and Anastrozole for two years. My Oncologist told me straight up to have Immodium handy when starting Verzenio. My diarrhea started about 10 days. He immediately dropped me down to 100mg Verzenio and told me to take Immodium proactively. I did have about 6 months where I did not take Immodium but really had to watch dairy, spicy foods and fiber intake. I ended up just taking 1/2 pill every morning and it did help control the diarrhea. With this combination My primary tumor is no longer present (diagnosed denovo) and my bone mets (im bone mets only)were stable from the beginning of taking these meds. Unfortunately it quit working. I am now on faslodex and hoping this gets it back to stable.
Thanks for the info. Sounds pretty rugged. Have to keep in perspective that it works!
I was on Faslodex, found it very tolerable, and it wiped out all my mets for two years.
There are a couple of tricks to making the Faslodex injections less painful, You may not need them but just in case: warm the syringes between your thighs before they inject it (makes it flow more easily; the nurses appreciate it), and make sure they take at least 2 minutes on each injection and that they do it more on the hip than the buttock (avoids hitting sciatic nerve and less painful).
Hello Tammy, I didn’t have a very good experience with Xgeva. When I had a tooth pulled it did not heal and I had a bone grow in the middle of the roof of my mouth. I was given Xgeva because of my Cancer but some how I wasn’t given the Xgeva correctly or something.
Oh, no, that is not it. You were given the Xgeva correctly, it is just that a small percent of people who get Xgeva (and Prolia, the lower dose version for people with osteopenia, not cancer in bones) and the bisphosphonates get osteonecrosis of the jaw. We suspect it is not as rare an adverse effect as they say. You are not supposed to have dental work done, especially extractions, while on Xgeva. (I had a tooth pulled while on it -- no problem. Then stopped Xgeva and got an infection and that triggered ONJ.) No one made a mistake with you, except not telling you not to have dental work.
Well I was told if I don’t get the Xgeva for a few months before my tooth is pulled and then go back on the Xgeva a few months after. I also started having some pain in my jaw so then just took me off the Xgeva and then about 11 months later the bone started breaking through the roof of my mouth. Only 3 months after it broke through the skin in my mouth the surgeon took it out along with 5 teeth. They say I’m one of the few that gets this but from all the posts on here I wonder what the pharmacist tells the oncologist because everyone has it give to them differently.
Oh, right. You are the one who sent those scary photos? After my surgery (two teeth and a piece of mandible, the bottom of my sinus), I thought of posting a photo, too. My mouth is still full of stitches. And you were off Xgeva long enough -- they really don't know how long is safe, or what triggers it exactly. I agree, it is not "extremely, extremely rare," as I was told. People with other kinds of cancer are also given Xgeva. Three of the five I know have "jaw problems" if not full blown ONJ.
I just want us Cancer fighter’s to know about what Xgeva. I know when I was first diagnosed people told me not to look at the internet because it would worry me so some of the medicine I was give I just took. I want to know my options with the medicines and I want others to know. Thank you for listening and I pray you get through your fight. My missing smile has really affected me, when I was working I was told I had a beautiful smile and knew me by my beautiful smile and voice. It all has changed now. I’m sorry but it hurts
After my lumpectomy my medical oncologist changed me to Verzenio. I asked him why he didn’t put me back on Ibrance, which was working, and he said there was data that showed that it was not as affective, plus, I had one lymph node that was cancerous, and he was trying to treat me systemically with Verzenio.
Yes, helpful. That it was in a lymph node is not really relevant. My mets were all in my lymph nodes, and Ibrance + Fulvestrant resolved them all -- until I got new ones. We have read here about people taking a break from Ibrance then going back and it works again. My onc. said that is not common. So Verzenio is more effective? I think that is right. I think it is also harder to take. -- Chris O'S
Sounds like you could use a second opinion for treatment going forward. I had to make that decision 1 mo. after diagnosis when I was not getting the feeling that my Onc was a good fit. Having someone who will be compassionate, answering questions and including you in your treatment decisions goes a long way to feeling confident you are being taken care of and getting the best care. Your life is in their hands…
Hi TammyCross. I see you did the serds trial for a year. I start the trial on Monday at Dana Farber. Could you please share with me your experience on this trial? Side effects etc….. thank you and as always best of luck to you. We all need it🙏🏻🙏🏻
That is great! Which one are you getting? Which pharmaceutical? What is the trial phase?
My experience was really good. The regimen is the easiest: 2 capsules once a day, around the same time, on an empty stomach. The only limitation was that the protocol was strict about timing and types of tests. Only side effect was a rash on my torso that didn't even itch. I tend to get rashes from every medication, though. I had fatigue occasionally, but mostly not, and some achy joints, but also intermittent and I could work them out with exercise.
I wish I could stay on it for life, but the oral SERDs are notoriously short-lived.
I don’t know any of the answers to your questions yet, but plan to ask. Thank you for your response. Just a little background. I was on ibrance for about 8 months when more cancer showed up. I was nauseous most of the time. I then switched to xeloda for a year, which I did very well on. Hardly any side effects but then more cancer. My oncologist (whom I’ve been seeing for 18 years and I love her)suggested I go to Dana Farber for a second opinion and now I’m in this trial. Praying for the best outcome. 🙏🏻
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