I haven’t posted in awhile because a lot has happened. I missed my Christmas due to hospitalization dec 22-26 th. I had been on the new meds affinitor and aromasin for a month but stopped it about 3-4 days short due to the way I was feeling. It was affinitor 7.5 mg . For about 5 days my pulse was 40-42 and one morning it was 39 and I started feeling pain in back and side and numbness in my arm. I thought it was a heart attack and went to the heart center. I was discover to have a heart block Mobitz 2 and cardiac were elevating. I had a pacemaker insertion. I’m doing ok with it . My onc came to the hospital and told me I’m not sure this med didn’t cause this but feels now it didn’t . I had a pulmonary embolism back in August when I was on Ibrance. I have started it back again the affinitor is now 5 mg half of recommended dose. We will see and please pray for me. I need to catch up on here. We are strong women and hopefully things will be alright. 🙏✝️
Look what’s happened to me😪 - SHARE Metastatic ...
Look what’s happened to me😪
Praying for you.
So sorry you had to go through this and at Christmas too, it’s so unfair, but glad you can let us know what has happened and get some support. Sending hugs and prayers that you will soon be feeling a lot better.Take care
Debra xxx😍
Thank you for your cocern🙏🌹
Thank you and I don’t know what caused it but I am heavy and most of my life . I am a diabetic and my parents were and the whole family where sisters and brothers were too. My parents and one brother died of heart attacks so I don’t know. I am praying it will work and not give me grief. I go in April for the pet scan-M D Anderson so let’s see.🙏✝️
My diabetes is going good but it not always been the case. Aic was 6.5 . I threw a pulmonary embolism in August and most likely had it in July. Now this but I’m grateful to be alive and someone wants me toLive. I hope everything will be better. I wish everyone this .🙏✝️🌹
I wish I could be of help. I want you to know I’m rooting for you…
Thanks and take care🌹
So sorry you missed Christmas at home. On the positive side, you have a new device to keep that heart in a nice rhythm now, and you didn’t catch covid in hospital.
I hope things will settle for you and you can enjoy being back home
Clare
Yes-take care and I’m doing better just want this covid to stay away!!🙏✝️
I’m sending you best wishes to feel better. You are definitely a very strong women. This disease is terrible and we can support each other. Take care.
Yes we have to be strong and thanks for responding. Take care 🙏✝️
Hi,I am sorry for your troubles. I also have a low pulse was also in the 30th/40th, now 50th and a block in my heart
I am supposed to have a pacemaker this coming Friday. I am on Xeloda now and it’s my fifth line of treatment since my diagnoses in 2019. I started feeling bad after a booster vaccine. I do not know (and no one does) what caused it. I am very down. My blood pressure is up. Probably because of huge anxiety. Please share how the procedure went and how you feel now.
I am very stressed out.
Best,
Marina
Hello Marina! I thought about that but I had the booster on August 22 and was feeling ok until maybe first part of December. It was so hard for me to walk across the parking lot -out of breath and so tired. I went to the pulmonologist and he said I was fine. After watching low pulse for about 5 days then I went to the heart clinic and they found it. I had pain in back and side. It was a Mobitz 2 heart block. It took me 5 days in the hospital but it was Christmas so they moved slow. The procedure did not bother me as I was wide awake with head turned to right side while he did it draped with sheet so I couldn’t turn. The recover all those Telly wires bothered me and the pacer pressure bandage was tough. It’s been one month and now healed just tender a bit.i feel better but not a100 percent. I worry about the rate which with little movement can go up to 105 but usually stays at 85-90 at Rest. I told my cardio dr and he doesn’t worry but it’s monitored by Medtronic that sends transmissions when dr requests it. I guess they are safe as dr said see you in 6 months.what meds were you on ? How is xeloda? I don’t like this affinitor and Ibrance worked for me for 3 years then tumor markers started going up. Did you ever hear of covid booster maybe raising the markers? Don’t be too worried about the pacemaker. I didn’t get a chance when it happened the dr said I needed it. Take care and be strong like we all have to be. We did not ask for this and doing the best we can.🙏✝️🌹
Hi Eliactida,Thank you so much for your reply and for sharing your experience. I am so down blithe everything. I was diagnosed in 2019 after 9 years of the primary bc. It was a shock to me. I thought that after 5 years i Was fine. I was on ibrance with exemestane, ibrance with fallowed, piqray but only for a few weeks due to severe allergy, tamoxifen. In 2021 while on tamoxifen i got a liver met in addition to bones. Thus, I was put on xeloda. I have not had a petct yet. It was postponed because of pacemaker surgery. I heard that vaccines mess up petct I assume markers as well. I take a low dose of xeloda 1500 mg because on regular dose 2000 mg my liver enzymes went up.
I hope you will feel better. Thanks for your encouragement and support.
Best wishes.
Marina
Wow you did a long run after initial diagnosis. Mine was diagnosed and straight with stage 4 to bone. The Ibrance kept it stable for over three years but now I worry. We will see with this affinitor. I wonder why they didn’t do a Pet scan? I have mine every 6 months but another person I know only has a C t scan.shes been on Ibrance almost 6 years. Hang in there and everything will be alright. I hope you are off meds prior to pacemaker. Also for two weeks after. I read that in affinitor but didn’t find out till after the placement. I was off already and waited after to restart it. Of course your med is different. Keep in touch Marina -let me know how the pacer went. Thanks for the support. Be strong and take care.🙏✝️🌹
Hi Eliactida,
Thank you so much for your reply and encouragement. I was actually one of the unlucky ones based on my oncologist. One in three women get mbc after the early stage . I got the mastectomy, chemo and radiation and after 5 years I thought that I am cancer free. I was also on pills for 5 years. You had a long run with ibrance. I was on it stable only for one year. As I mentioned to you I am on my fifth line of treatment over 2.5 years. Some women stay on one long. I have a constant anxiety. Now these heart problems. I also started having high blood pressure. I am scared and very sad. The oncologist said to get off Xeloda 3 days before and 3 days after.
I try to think positive but it’s better said than done with this diagnosis. I was hoping for cure and was very active in promoting ErSO, the compound that has curative effects on mice. But recently the company Bayer canceled its development. I still hope because the scientists are optimistic but not as much as before. It had a very negative effect on my nervous system. It was a miracle drug for me. What cancer center are you going to? Where in Miami Beach do you live? I am in Hallandale beach and go to Sylvester.
I wish you the best.
Marina
I live in corpus Christ texas and I have a dr here but I have been going to M D Anderson as well. I will see them in April for my Pet Scan and I hope this med has helped. Try to calm yourself because it’s in God’s hands and you can only pray and try to live healthy. Anxiety can be controlled -you need to think positive. I had high blood pressure too but now on a med for it.i have read about ErSo and there is a new inhibitor 7 they are working on. I wonder why Bauer cancelled the research on ERSo ? Be strong and I’m sure you will be okay. Let me know how the pacemaker insertion goes. Take care🙏✝️🌹
Hi Eliactida,Thank you for sharing and warm words. I am still very anxious. I try to think positive but with this disease it’s better said than done. How are you feeling on Afinitor? Are there any side effects? My oncologist wanted to put me on it but then changed her mind and put me on Xeloda because on liver Mets in addition to bones. Where are your Mets? What new drug are you talking about?
Best,
Marina
My advice is if you change then start at lower dose. Thank god I didn’t start it at that. M D Anderson wanted that but my dr here said 7.5 mg and even then it lowered my marker 6 points in just short of a month. It bothers my taste buds as not anything tastes the same to me. Bitter at times and nausea. A friend had diarrhea with it so she stopped it but she was on 10 mg. If you haven’t been long on your med stay on it and give it a chance. I’m giving this till April 6 to see my Pet scan reading. Take care and we know all the meds effect people differently. I never had diarrhea with affinitor.🙏❤️
Praying for you! Stay strong!🙏
How frightening for you. I hope you recover quickly and stay stable on med change. ♡
So sorry for all you have been through. May your new pacemaker will give you the strength and energy to move forward. Sending you healing thoughts for a quick recovery.
Thank you and I hope things will be better. We must be strong and think positive or we can’t go on. It’s funny but I try not to think about it just live life. Take care 🙏✝️
Hi Tam,Thank you very much for your support and good wishes
Best,
Marina
Praying!
Sister, and yesssss warrior I am praying you will fully/wholly overcome this health challenge😇 Continue to keep the faith, and continue to stay strong sister/warrior👍😇
Yes we are warriors and strong-thanks for your response and wish all the luck for both of us and everyone with this awful disease. Take care🙏✝️🌹
keeping you in my thoughts.
I know to say be strong is helpful but does not help when going through it!! You are in my prayers
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