Best Of
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
I have made it almost two years on Kisqali/Letrozole/Zometa and my MO is starting to deescalate to fewer appointments, saying that I may become a long-term survivor. No guarantees of course as we all know. I am NEAD and have been for a while. I mostly attribute this to the luck of the genetic draw. I sometimes think that my dad's genes are at war with my mom's genes, since she died of an aggressive cancer before her time. (A marvelous woman, by the way.) My dad is in his 90s. If there is anything beyond biological luck, I can say that I eat healthily (though I have a sweet tooth), walk everyday, do strength training three times a week, challenge my mind with good books and puzzles, have a supportive social circle, plan things for the future like trips, have a drink about once every three months, use THC fairly regularly as a sleep aid, take D3, calcium, magnesium, MSM and turkey tail mushroom powder. I have no idea whether any of these have any effect at all, but who knows.
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
@elena_p Really sorry you're going through this. Many of us have had to take some weeks off Kisqali for various reasons (letrozole is doing the heavy lifting) and some of us are moved to a lower dose. The lower dose seems as effective. I've been on 400mg for almost two years. THere are other effective drugs available. So my fingers are crossed for a good outcome for you.
Re: Can we have a forum for "older" people with bc?
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The Mods
Re: CT and Lung Nodules
Here for an update. I saw my oncologist today. We went over my PET CT results. Everything was good overall. There was slight uptake on the nodule SUV 1.5. The pulmonologist was able to look at my images from Mayo. They all agree the nodule is there a year ago and it's stable. They feel like we could just watch the nodule but they are willing to do a biopsy if that is what I want, and I do! They don't think it's cancer due to the low uptake and the fact that it's been there a while. So that gives me a big relief.
The rest of my PET CT was good. There was no uptake in my abdomen so they will check on the pancreatic cyst in a year. No uptake in my bones. There was a mild uptake in my cervical lymph nodes but it's likely reactive. I have a stuffy nose and scratchy throat right now so I'm not surprised.
Now I'm waiting for the pulmonologist to get back to me to schedule the biopsy. I'm feeling really good about everything. Except my amazing oncologist is moving so I am going to find a new one. I'm heartbroken. I trust her completely. I hate to have to find someone new.
cmre00
Re: All about Xeloda
@lacombattante Thanks! It's interesting about sauerkraut and I have been eating it after reading about its benefits. I found a recipe for sauerkraut salad, which is sauerkraut, chopped onions, peppers, celery, carrots and apple. The recipe calls for 1/4 c of vegetable oil, but I like to substitute applesauce for oil and I add a bit of sugar. It's healthy and even freezes well.
I saw my oncologist today and I will continue with my Herceptin every 3 weeks and 2,500 of Xeloda at 7/7. My platelets are back up, TG. But my red cells are still very low.
denny123
Re: All about Xeloda
@lacombattante - Oh, thank you so much for such an encouraging and comprehensive summary of your experience with liver mets and Xeloda! This is a big help. I have all the anit-nausea and anti-diarrhea drugs here already and the fact that they thought I might need them is terrifying. I have to say though, that I was given similar drugs when I started Verzenio and I wound up never really needing any of them for the whole 2.75 years I got with that drug. My Xeloda is supposed to be delivered by some kind of courier today, so I am anxious about that. Apparently they can't just send it in the mail like the specialty pharmacy did with the Verzenio. This actually comes from my clinic and has to be signed for every month and they can't put it in my mailbox or locker. I don't get it, but they say it is for legal reasons. I'm so glad to see that you are doing so well on the Xeloda. It helps me a lot, because I see so many on here that it only worked for briefly or not at all. Yet there are those who are getting several years with it, so that gives me some hope, at least for now. I'm also glad to see that you eat a lot of probiotic food and think it helps with the digestive issues. Even before I started Verzenio, I was eating a small side serving of fresh sauerkraut every day, which I've continued to do, and I also have an afternoon bowl of probiotic yogurt with fruit and nuts in it most every afternoon. I think that saved me from a lot of the diarrhea problems that so many get with the Verzenio. That never really was a problem for me, thank goodness, so maybe it will all help with the Xeloda too. I'm also glad to see that you are successful with the one week on, one week off, schedule. So many seem to find that much more tolerable and my oncologist thought it would be better for me from the get go, since I am pretty prone to side effects. I'm to start with 3000 mg a a day. He says that although it is a low dose, it is "very effective" and that would appear to be borne out by your experience with the relatively lower doses and time schedule. I really appreciate you taking the time to describe your experience in detail. It is very beneficial to me. I wish you nothing but the best of luck as you continue with the Xeloda and I hope it gives you years and years to come!
Re: Can we have a forum for "older" people with bc?
To practice five things under all circumstances constitutes perfect virtue; these five are gravity, generosity of soul, sincerity, earnestness, and kindness.
betrayal
Re: Can we have a forum for "older" people with bc?
betrayal - Hoping the thoracic epidural provides much needed relief. The issue with the prescription bottle having another customer’s label under yours is appalling. I hope the pharmacy changes their process.
Otter - will be thinking of you next week and wishing you the best with your surgery and pathology.
Cindy - you go girl! The ice maker is fixed!
Chris - Tippy is an amazing dog and companion.
Woke up yesterday to a dusting of snow. Ack! Pulled the covers over my head and decided to delay going to the gym until today. I did make it to the gym today and had a decent workout. It is, not surprisingly, busy at this time of year but during the day it is still fairly easy to find a machine to use. I was getting bored with my workout so I reduced the elliptical workout from 3 miles to 2 miles and added the stair stepper and some upper body workouts. Temps are supposed to drop over the weekend but I’ll have to force myself to get in the car and go to the gym.
New washer and dryer will be delivered on Saturday. The current set still works so we are able to do laundry. I just need the current washer to last 2 more days (fingers crossed).
Waving ‘hello’.
harley07
Re: Can we have a forum for "older" people with bc?
Another busy day. I had a volunteer picking up IKEA donation and I found some bedding that was never used that she also took. The charity helps people set up a home at no charge and I really find that to be nice in this day and age. I called Vietnam Veterans to arrange a pickup for 1/21 for the clothing we had removed from DH and my closets. Other phone calls to eye doctor to insure recent report goes to PCP, and Pulmonary to get supplies now that test month is up. Still having minor issues with mask, but it's much better now.
Got up early because I wasn't sure when drapery guys were coming and wanted to clear the table runners and seasonal items off the table. Some are being rehomed to the linen closet and others will be kept in a drawer. I also sorted through the kitchen island runner drawers and removed the Christmas and Easter items to be stored in the linen closet now that I have the room. The remaining runners were separated by season or theme for easier access.
Got 2 loads of wash done as well and now I am done. My back has been bothering me for the past few days, and even with the medication, I don't get complete relief. I do have to make my bed and put the items in the linen closet.
The drapery guys came, removed the sheers, drapes and the valance. They can clean the valance on site at half the cost of taking it apart and reassembling, so I took that option. More expensive than I expected, but still cheaper than replacing them. This will be their first cleaning and considering they remove, clean, replace and then steam in place after hanging, the price seems better. They are double lined and quite heavy so pin placement is critical to prevent tearing.
DB comes on Monday to paint, so the room is ready to go. We took the leaves out of the table today, took the shelves from the China closet out and they are on top the table. The wall decorations have been stashed in a very crowded living room. We need DSIL to help lower the china closet off the buffet base or move the entire unit away from the wall
I am hoping that next week I might be able to get to DD's old closet to sort through the clothing I store there. One section is summer clothing, another is lightweight jackets/fleece hoodies, the third is vacation clothing, and lastly is the center shelving holding travel items. It needs to be reorganized after I cull unwanted or ill fitting clothing. I'd like to really reduce what is here to what I really need for summer, jackets and then travel.
I have my thoracic epidural tomorrow. I don't know what restrictions I might have afterwards. I am just hoping I get relief. DGD has a basketball game on Saturday as does DGS. His is so early in the morning and they are 30-40 minutes away based on traffic. We won't be able to go to his game and I might not make hers based on how I feel.
I hope everyone has a great day and am waving "hi" to everyone.
betrayal