Best Of
Re: Am I being under-treated?
Amerli, you may still wish to get a second opinion. The availability of virtual appointments makes that far easier and faster now. It's great that you have a planner ready to help you organize appointments, track symptoms, etc.
Lyn
vlhvlh
Re: Am I being under-treated?
@vlhvlh Thank you for shoring up my and my MO’s decision. It gives me some peace of mind going into surgery. I am very much a planner so believe it or not the first thing I did was to buy a dedicated planner and have been documenting everything in it. The thing I find most encouraging in your post is that it is possible to one day begin to forget some of this ordeal. I will hold on to that because right now I feel like I will never be free of this.
amerli
Re: My Husband, My Life, My Love, My Family, My Cancer
I know it is superbowl for fans or just a get together with really good foods and a choice of halftime shows as there are a couple to choose from.
I just woke up, nothing on the agenda for me as usual. We are going to be warmer into next week, all this cold was a bit much. Nice and sunny here though today which is nice to see.
I plan to cook up some ground beef to go along with some crispy lentils and rice. I am also trying to pick up a 3 pack of lean ground beef, expecting they will not have any but will find out. I do think it is worth getting lean ground beef since the regular stuff is just too greasy and bad for the digestive system. Later can add an egg into rice, cheese, seasonings and crispy lentils.EDIT They apparently had some of the lean ground beef stuff, 3 chubs for 10 bucks, now am paying tip but also should have ordered other stuff, next time keep minimum order to 35. I only placed order 15 mins ago and it is on its way already.
I hope everyone have a good day, in pockets for all and may the food be good.
Re: All about Xeloda
@eleanora Please update us after you have your meeting. Don't worry about your hair. Remember that early stage ladies are more likely to have lost their hair, too. Although I was the only Stage 4 lady in the group that I ran, I enjoyed the admiration that I received. And I also could share information about the various treatments that were available and how to deal with the side effects.
After my group was shut down, I was on a zoom BC group for several months during Covid. And it was kind of neat since we were all in different stages. But once the initial Covid scare was over, they stopped the Zoom and now just meet in person in Pittsburgh, PA…..35 miles from me. I don't like driving into Pittsburgh at all, so I don't go.
Denise
denny123
Re: All about Xeloda
@airlinegal I am so sorry about your heart attack! I hope that all is well now with no lasting effects. That is so scary!
I have been on Xeloda for over 8 years and it reacts adversely to foods that are high in folic acid. Those foods should be eaten in moderation because they are the reason for the bleeding, burning and infections in our hands and feet. I read about it early on, ignored it, and suffered greatly for 2 years.
Finally, when my feet were so bad that my onc wanted me to stop Xeloda, I remembered the folic acid advice. I had been eating huge spinach salads, and a lot of broccoli, etc. I cut way back on those and for the last 6 years, my hands and feet have only been dry. So just eat those high-folic foods in moderation and you don't have to stop eating them completely. I also stopped taking my multivitamins since they have folate.
I use Aquaphor at night on my hands and feet with socks and food service gloves. Aquaphor and socks during the day, and Gold Bond diabetic cream on my hands during the day. Remember to take the pills a half hour after you eat to avoid nausea. Xeloda has been very easy for me, now that I know how to eat while taking it.
Denise
denny123
Re: STEAM ROOM FOR ANGER
@kathrynw1thasea Could you allow yourself to just feel your anger? Just feel those feelings without wondering if you are right or wrong. Maybe do some journaling to let it out and process it. It would be very hurtful to be left out of the decision making process regarding your parents but at least it is done. I remember about your quilting machine-I'd be angry about that too but maybe at this point you should buy one for yourself if you can afford it. It sounds very much like you've been shut out of everything and that has to hurt. Maybe this can be a new chapter where you can visit your parents as you are able and avoid Sister #3 whenever possible. Nice story about your ex-even though things did not work out, how nice that he is still in your life as a support and that your relationship helped him to be a better husband to the woman he eventually married. Peace to you.
Re: How are people with liver mets doing?
I had a single liver mts in 2017. After 6 months of exemestan (which at that time worked on sing vertebra lession) and liver lession litttle bit grew I had ablation. They were able to do it laparoscopicaly (it was 2.8 cm big) and the recovery was very fast. I exercised yoga after 1 month. Next 8 years - I had liver clean (couple bone progressions) up to November 2025 when 8 new small lessions appeared. So for me ablation was the best thing for my liver st that time.
maaaki
Re: HERCEPTIN and/or PERJETA Threads
@livinglifenow I am so sorry you’re experiencing pain, I hope a change in hormone therapy may do the trick.
I never took any other AI, just the anastrozole for 6 years. I went straight to Fareston because I had read good things about it and it really is treating me well. I had horrible leg cramps almost every night with anastrazole, and since going on Fareston and no HP, I am the most side effect free I’ve been since getting diagnosed with BC. Look into Fareston maybe and see if the you and your doc think it might be for you. ««I just realized I sound a little like a drug commercial - “Talk to your doctor and see if XXX might be for you”.
@bsandra Oh, you flatter me 😄but seriously I hope we do get some good information from the studies of HER2+ outcomes. The study I am on is very small but my doctor revealed to me that other day that since October 2024 only one subject on this study has had a positive Signatera and even with that, her imaging did not yet show progression. Again, it’s a tiny study but still we cling to all tidbits of good news, right? Take care and best regards to your lovely family.
olma61
Re: Afinitor/Aromasin
Hi @norah2024 I am going to reply to your earlier message first. I get anxiety also but I am somehow able to talk myself out of it most of the time. I don’t know if the anxiety is causing the side effects but of course does not help. I had pain on the right side of my face a few times but think it is due to dental issues. Do you have any dental issues you need looked at? Also I have super sensitive sinuses. Do you have any sinus issues?
I now take Naproxin for pain relief (Alieve) because I cannot have headaches and pain ruling my days. I hate to take additional l meds but I will to feel better if I have to.
Do you have any relief since you sent this first message?
I very rarely have any nausea issues. And my side affects all started after a month+ into the medication. Have you called the pharmacist at Affinitor? They may be able to help with food suggestions. Also maybe a nausea medicine to at least get you through this part. I would ask your oncologist about that. I have to be very careful with supplements - they do not agree with me. But we are all different. Be careful with that.
Do you have other symptoms and/or have some subsided? I’m sorry I don’t have more info for you. Let me know how you are doing. Thinking about you.
Re: Can we have a forum for "older" people with bc?
Betrayal, definitely get that cross stitch set up and while away the time.
Carole, I’ve purchased the tax software and have most of what’s needed to file. All due 4/15, I’ll file both through the software.
Your mention of sales tax reminded me of a time traveling down here, via TX. I think we were by Loretta Lynn’s ranch, headed back to the main route and stopped in a gift store. I bought a few things for gifts and at check out the total was so off of my estimate I had to ask did something ring up wrong. No, it was their sales tax … I swear it was near 13%. Blew my mind. We pay 8% which we thought was high. I digress!
We had a beautiful sunny and warm day. First good day in some time. All neighbors are comparing our power bills, on how much they’ve gone up now that we put heat on. I think from last month which included Christmas lights and guests, ours went up $20. And in comparison to NY it’s still lower by about $40, and that house is empty!
Speaking of NY it’s absolutely brutal there right now. Winds were causing -21 feel temps. It’s going down to -6 overnight. I keep checking on power, wifi Thermostat and cameras. So far, so good.
We went down to the casino for another free outdoor concert. Weather was great, but attendance wasn’t real high. We’re thinking it was due to the many things going on today. It was a New Orleans funk fest, zydeco music, which is fun.
This was Soul Rebel, a lot of horns that sounded great. I did run into the casino to leave some money. Hope to collect some money one of these days.
Super Bowl tomorrow, I’m viewing it as an east coast, west coast challenge. Sorry ladies, I’m east coast for both houses!
We’re planning on running down to Bonita Springs for their music & seafood festival at noon, before football. Really it’s for SO to hear some guy play - he’s tried 2x and the guy always cancels. I hope he shows up this time.
cindyny