My Husband, My Life, My Love, My Family, My Cancer
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Lee, congrats on stable 🎉
I’ve had a slightly prominent mesentary node for at least a year now. I looked it up and if I recall, it’s has to do with the stomach lining, I think. It was not specifically mentioned by MO and she seemed unconcerned when I asked about. Seems to be a likely benign finding but of course nothing is easily written off for us, at least in our minds. Sending you calming vibes.
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Lee and Tanya, I can go for stable as well, that is great for both of you!
Mel, the snow pictures are quite pretty.
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Lee, I had omental haziness on one of my CT scans. On the next one it was gone. Just wanted to let you know. Congratulations on stable. That’s awesome.
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My hubby got a COVID vaccine yesterday. One positive to being a health care provider in very rural Wisconsin. Now if I could only have gotten mine
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the news has been saying a lot of people are having severe allergic reactions. I'm worried for us. I've been through anaphylactic allergic reaction before. I don't need it to happen again. No one does ! Good luck to DH with his. I hope he's feeling good
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Morning all.
Lee- Woohoo on stable scan.
Pocket duty requested for my Monday scans and MO appt. I have to travel (2 hour drive, one way) to my new cancer center --(I know some travel waayy more)-- so they schedule the scans in the morning then a 2 hour gap then the MO visit. I am thankful they want to cut down on travel time-- versus having to travel for scan, then travel back in a couple days for appt. And with Covid, then less visits. But.... I do not really like that the MO is seeing the results at the time she is discussing them with me. Does she already have a plan in place for if I would have progression? She wouldn't have time to discuss with Tumor Board.
Yesterday and today I am making 3X5 notecards with "No progression" and "Progression" with my questions/ issues. (I know, I am OCD and organized) If all ok, then out comes the notes for "No progression", and if progression, you get the picture. I am thinking about what I might suggest as what I want to try next-- maybe change from Ibrance to Verzenio and change hormonal from Letrozole to Faslodex??????? But, I guess it depends on how the liver looks and if any other areas have popped up. I just want to have some thoughts jotted down, esp if she says there is progression and then my thoughts will go out the window.
Laundry today. Not much else.
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Candy,
Good approach to your upcoming appointment. I'm with you on being ready for both eventualities. I agree that it's hard to get the results in the meeting with your oncologist -- I don't why they think that's a good idea. But, in your case, it does cut down on traveling, so that's helpful.
On my MBC group zoom meeting last night, one of the folks was talking about possibly going from Ibrance/letrozole to Verzenio/faslodex, and one of the things she mentioned was that part of that determination might be whether insurance would pay for it. I gather there is some issue about going from one CDK4/6 drug to another with some insurance companies. It stinks that insurance can partially dictate our treatments, but with the cost of these drugs, it's inevitable. In light of that, if you're switching drugs, you might want to immediately ask your MO who makes the drug and what financial assistance they provide to patients.
Good luck on Monday. Hope it all goes well.
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BevJen- Yeah, I guess insurance would be the deciding factor. Stupid. My previous MO said when you progress on a CDK you have to leave those drugs. She said insurance would not let you go to another in that class. I was hoping she was wrong, as she was about me not being able to do the on 5 days/ off 2 days with the Ibrance. I am doing that now. We will see what this MO says. Maybe then--- Exemestane and Everolimis next????? Or Fulvestrant and Everolimis???
Edited to say--- If I have progression, I am going to ask about another biopsy--either tissue or blood-- to look for change in HR or HER2. Before going to next treatment.
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In your pocket, Candy. I write notes on my phone for my visits with my docand when I visit my daughter. I can never remember what I am going to talk about if I don’t write it down. Lol.
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Candy~I take ibrance 125 mg. One week on and one week off. It’s been so much better with fatigue and mouth soreness. My counts weren’t even a tiny bit low like usual so for me. I pray to stay on this for every second I can get. I haven’t scanned since March of 2020. I am set to scan March 2021. It makes me comforted knowing that my mad scientist of an oncologist feels I’m stable enough for yearly scans makes me so relieved. Of course if I felt something was off I would go sooner. But so far it’s been great. I’m very thankful to be starting month 48 on ibrance and anastrazole
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Mel- Wow !! Cycle 48 !!! And on the 125mg. Good for you. I am on 75mg (lowered to 75 after the first couple months). Wow that you can do yearly scans too. Even if these scans would be stable, I do not feel comfortable going out more than 4 months between scans. With my liver mets-- having organ involvement-- I would not want to spread out scans too much. I know some on here say if they felt something was wrong, they could tell MO and scan early. But, I had no symptoms when I was first diagnosed-- with an 8 centimeter liver met. I was working full time, living life. No feeling sick. No pain. Routine labs were good. So I feel I cannot trust doing scans based on how I feel. I pray you stay good and on Ibrance and Anastrazole for a long time to come.
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Candy, I'm in your pocket for Monday. Also wishing you safe travels to and from your center. The notes for the two scenarios are a great idea, will keep you focused while trying to react to the results. I sometimes have trouble writing notes on what MO says because I'm also trying to listen and keep some eye contact. (DH is usually there but he's about the same as I am.). So then it's up to my recall. Hoping you get another positive report!!
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Thanks Rosie!!!! I go alone so, yeah, have to stay calm, keep eye contact, ask questions in the time allotted, and not forget anything. Weather report says Monday supposed to be sunny and 50 degrees, so that sounds good--- no rain, sleet, or snow.
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I'm in for pocket duty Monday.
Goldens nice that your DH got a vaccine. I hope you get one soon and then you can start to make some plans differently. I heard we still have to wear masks. A lot of rumors.
I think the comedian Chelsea Handler said anyone who partied with her 20 years ago doesn't have to worry about vaccine side effects bc they were brave back then to take drugs so...
Tanya
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candy, I do exactly what you're saying with the notes with various scenarios. I like to make decision chart flowcharts all mapped out beforehand.
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Candy - in your pocket for Mon
Mel - good that you got for a walk....I agree getting moving in the first place is very hard. Do you find your pain eases as you continue moving, or is it there all the time?
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Candy, it makes me sad when you say time allotted. I have never once felt rushed with my oncologist. She will sit with me as long as I need. With what's going on with my family, she might need a little extra time. I'm not leaving until I'm done spilling my guts about my brothers.
That may not be what you meant, so if not, please forgive me.
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The moderators posted on the Ibrance thread about the Covid 19 vaccine and people receiving cancer treatment.
Tanya
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KBL- You are fine. My previous MO would slowly walk to the door as I was talking. She would make comments like "I have patients waiting" or once her nurse commented, where I could hear, "We are running behind now". I have only had 1 office visit with this new MO, but the patient portal that shows the time of my appt says "15 minutes" in the appt time area. And being a larger cancer center I know they have a lot of patients to see. But, in an appt that may show progression, I wish they would allot more than 15 minutes.
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Candy in your pocket on Monday. I have heard of some people being allergic to the vaccine as well but not a high percentage. I just wish there was more information over what ingredient(s) are problematic. Would help people know if it was like to cause an allergic reaction based on any known allergies they have.
As far as the vaccine, I am not likely to get the vaccine until September the news is saying. I would be satisfied with the number of new infections going down so pandemic restrictions relax. I truly miss places like movie theaters and gyms. Not willing to go now.
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Goldens,
I’m so excited to hear that your DH got the vaccine. He’s the first person I’ve heard of so far who’s gotten it. I’d love to know any feedback from side affects, etc. Hats off to him for being brave.
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Candy, where I go medical oncology appointments are scheduled in the computer in 15-minute time slots, but my onc simply takes whatever time is needed. I hope that will be the case for you. You are respecting her time by coming with your questions prepared. Don’t be afraid to say that you still have something you need to discuss if she starts to leave too soon.
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Candy, I think mine is 20. I even say to her that I need to let her go, that she has other patients, but she doesn’t budge and keeps talking. My only thought is she’s the nurse practitioner and doesn’t have as many patients as the MD has. I feel more comfortable with her, so I stick with her. If she ever had a question, she takes it to him anyway. I was seeing him in the beginning, and he’s very nice and caring, but for some reason, I’m more comfortable with a female.
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Thanks all for the pocket duty and well wishes. I am just ready to get Monday over. What will be, will be. I will definitely post after I get home--- of course--- you are my peeps. Hope all have a good weekend. I will be reading along this weekend.
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Saw the oral surgeon today for my ONJ. There has been no improvement and now I have it in my lower left jaw as well as the upper right jaw. He said he has never seen it in two different places in a patient. My MO is referring me to an ENT dr. and has ordered a CT scan of my face. He said it was to get a "baseline". I thought someone else here had ONJ and was supposed to have surgery, but I can't remember who. If you see this I would like to hear how you are doing and what you are doing about it. My MO would like to get this resolved so I can get back on Xgeva, but it is my understanding that it has to resolve itself and can take a long time. If anyone knows anything about this, I sure would appreciate your comments.
Hope everyone has a good weekend. I am going to be busy baking xmas cookies so I can give a goodie box to my kids, grandkids, and great grandkids. Told DH to find his apron because I'm going to need help. I usually make 5 different kinds as everyone has their favorite.
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Hi Lee64, I had one in 2 different places at the same time as well, in exactly the same places, my oral surgeon just had me use a chlorhexadrine mouthwash 4 times a day, I used Savacol from my local pharmacy and just watched it, it took a good 6 months but both pieces of bone came loose and fell out on their own with healthy bone underneath, I actually used to wiggle it like a loose tooth, as per my oral surgeons direction, and I eventually got them loose enough to pull out by myself. That was 2 yrs ago now and I haven't had anymore problems, I was even able to restart my xgeva injections. Its a long process but well worth the wait.
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Candy,
I’m in your pocket on Monday for sure. Always!
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Kittykat,
I’m curious about your ONJ experience. What did you pull out?
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I pulled out the dead bone that broke away from my jaw, then it healed over and was like new again. I'm from Perth in Western Australia, hi everyone, I follow along with you all everyday but today is the first time I've been able to give a bit of first hand advice.
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welcome. To the thread KittyKat.... it's nice to see you posting here. That sounds awfully difficult to deal with. My goodness I can't even imagine such a thing. I'm so glad it resolved. Again, don't be a stranger. If you lurk. Just post with us. Grow our family even more!!
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