Best Of
Re: Herceptin only ... no chemo ... Medicare won't cover it!
Thank you. We’ve already started that process with Genentech. I’m discussing this as an age discrimination issue and I’m using one of your research papers as justification for a herceptin only treatment protocol.
Re: HER2 Positive-anyone 10 years out?
@hopefaith1 Hope that you are doing okay. I do use google for explanations for a ton of terms and possible solutions. I am not one to believe in snake-oil treatments and take all with a grain of salt.
I am also on a lot of online support groups and do learn a lot there.
I am at 23+ years of MBC de novo.
Re: Can we have a forum for "older" people with bc?
Carole - glad to hear you are safely in MN. How is the air quality? Are you being impacted by smoke from the wildfires? We are having lots of gray, hazy days in northern Illinois. Fingers crossed your refrigerator continues to run.
Taco - good to have you check in. Love the idea of the dog pictures. They sound really cute.
Spent yesterday in Wisconsin celebrating my grand nephew’s high school graduation. It was great to see my family and have a whole day with my son and DH. My son is 33 and is closer in age to my brother’s grandchildren as DB’s kids are in their 50’s. My DS is pretty easygoing and gets along with everyone.
Had my quarterly visit with the GYN Onc today and everything is fine. The NP had noted a prominent supraclavicle lymph node in my neck during Friday’s visit and suggested I ask the oncologist about it. He can’t feel it and neither can I but felt a CT scan was appropriate given my medical history. I have an appointment for that in two weeks but I’m not concerned. However I can’ t get a bone density scan without a doctor’s order so I messaged the NP’s office to request an order. We’ll see if I get a response.
I also saw the RN’s notes from my MWV. This is the RN I saw for 2 minutes while waiting for the NP. He noted that no height and weight was on file but BMI was overweight. I messaged the office and told them the MA took all the vitals when I arrived and the info is somewhere in their office. The RN also noted that I was not interested in discussing the advanced directive. So I messaged the office and told them he did NOT ask. I have an AD as I have advised the doctor for each of the past two years. Clearly a lack of communication within their office.
When I made the CT appointment, the woman told me to arrive 15 minutes and then later verbally corrected it to 1 hour early as I have to drink the contrast which I believe is accurate but is not reflected in the appointment time on the patient portal. I’ll call the imaging center directly to make sure I understand the correct time to arrive.
All of you have been wonderful with ‘listening’ to my medical complaints. But I am finding nearly every medical encounter results in some type of discrepancy or error. I’m frustrated and scared.
Have a wonderful week.
Re: Can we have a forum for "older" people with bc?
Hazy today due to smoke from Canadian fires drifting to area. Sun trying to get through so a mixed day with temp at 70 degrees. I was going to direct DH in planting some perennials but was too tired.
I am sleepy because my knee kept me awake, so needed to use ice pack and read for about 45 minutes before I drifted off again. I did take Norco at bedtime because leg was hurting, but woke again at 6 and had to take a second one. So I did not take one before PT and was able to make it through.
There is another woman at PT who also had TKR and we were talking today. She had hers replaced in January and she was amazed at my progress since I am not quite 2 months out. She is struggling with her right knee and for me, its the left, so we are like bookends. When she first started coming to PT she was using a walker and has advanced to a 4 prong cane now. I use my cane if I have to walk long distances or if I am tired and in pain.
So plants will have to wait until tomorrow. I did dig holes yesterday and think that is why I am experiencing pain. I want to resume some normal activities but the knee is not cooperative. Frustrating since I don't want to always have to sit with leg elevated. DH is not a housekeeper so my house is not in what I consider as clean as I like it. I can't vacuum yet but I can dust so I just need to concentrate on that at present. DSIL likes to mop floors so he will do that for me.
Taco, so glad you have a physician who knows you and lets you discuss where you are at mentally and physically. Got a laugh about his "kill Ken" comment. Getting a good physician these days is a real challenge and when you have one, you want them to grow old with you or to never retire.
I saw a physician for pain management 5 times and she was never prepared for our appointments, plus she was always very late. At the last one, she acted like it was the first time we had ever met, insisted I needed a med I would never take (told her that) and insisted on giving me a prescription for it and for another appointment. I walked out of there, made an appointment, and by the time I drove home, decided she was dangerous and I was never going back to see her. I called and canceled the appointment. She was well-respected and the chief of the department, but as far as I was concerned clueless about me and my concerns. Never prepared for any appointments.
Hope everyone had a great day.
Re: Stage III Cancer Survivors ...Five + Years and Out.
Just checking in - still kicking, still working, still complaining at age 75 and coming on to 30 years NED.
Re: IBC lounge: roll call, support and just a good place to hang out
@katelynn50 I am very happy to hear you went through treatment and came out the other side as well. 34 years post treatment is a feat as well.
I am still here, 10 years post initial dx of IBC. Apparently it does well with chemo. Went through the rads, initial chemo and mastectomy. 9 years ago, 10 cm tumour found in my brain, craniotomy and whole brain radiation followed. That really sucked. 7 years ago, bit of mets grew back, 5 rounds of rads, only aimed at the mets. Since those findings, been bopping along fairly well. Almost a year ago, a blood pool was found in my head but we are watching it and doing nothing as it has not grown so I am unconcerned. Stage IV means never getting a break but I only take Herceptin and it seems to have taken care of it, no other mets than the brain have ever showed up so that is good.
Re: IBC lounge: roll call, support and just a good place to hang out
Dear Katelynn50,
Wow, congratulations. May I ask - what's behind autologous stem cell transplant - was it one of the BC treatments? Hugs and congrats again,
Saulius
