Hi, I’m new here. 10 years and 8 Months in remission and out the blue a recurrence. I’m loving this group. Thank you.

[Phillipians4and6]

Pleura and Lung Mets. I’m currently on Ibrance and fulvestrant. Over all it’s not that bad. I’m about to start my 4th cycle. During the 3rd cycle I started having headaches, blurred vision and numbness. (I had some numbness from chemo 10 years ago) It’s freaked me out. I soon found that all this is common with these drugs. Thanks so much for sharing. It helped me relax and stop thinking the worse. I’m a 41 year old high school principal. I have learned to relax when I need to.

[Scandia68]

Welcome and thank you for sharing. This site has some wonderful people for you to connect with, and there is always someone in a similar situation who understands how you feel x

[Phillipians4and6 in reply to Scandia68]

Thank you ❤️

[hdhonda]

Welcome. You will like this group. We have some folks who are very knowledgeable ( I am not knowledgeable). I have lung mets too. I am on Ibrance and Letrozole. I have learned so much from this board and it is so friendly. Blessings Hannah

[Phillipians4and6 in reply to hdhonda]

Thank you. ❤️

[Jerseygirl45 in reply to Phillipians4and6]

Welcome to the group, I was on Ibrance and letrozole for almost two years. Really liked it not many side effects except fatigue.

You will like this group of you have a bad day you can tell us we have all been there. And we all love to hear when someone has a good day, it keeps us going. So feel free to say what you feel and we will help you get through it good or bad.

Barbara

[Phillipians4and6 in reply to Jerseygirl45]

Wow just wow. This is such a blessing

[viennagirl in reply to Jerseygirl45]

Thank you for your encouraging words. I am on Ibrance and Letrozole for the past 9 months. I tolerate it quite well but have some numbness in my toes. My tumors are shrinking. You said you were on these hormone drugs for two years. I now wonder if you are on something else or if you have gone into remission. I hope I can keep improving and I hope we can all get our health back. Hugs Marlene

[Jerseygirl45 in reply to viennagirl]

I am not in remission. But I am on Gemzar chemotherapy. I hope it brings my markers down.

[MyMiracle13]

Hello and welcome! As Scandia68 said, there is always someone in this group in a similar situation. That happens to be me😄. I have mets to lungs and pleura too. Diagnosed March 2018. Started Ibrance and Fulvestrant in July 2018.

Maria

[Phillipians4and6 in reply to MyMiracle13]

This group is such a blessing and I can’t say thank you enough for welcoming me.

[Red1246]

Welcome! I’ve learned so much on this site and the support is incredible.

I’m sure it’s very scary - I too was in remission fir 10 years and it never occurred to me it would return.

I’m learning to be my own advocate and live each day to the fullest. There are upsides to this disease.

Wishing you all best in your treatment.

Kathleen

[Phillipians4and6 in reply to Red1246]

Thank you Kathleen. Your words are very inspiring.

[viennagirl in reply to Red1246]

Kathleen. If you were well for ten years then you will get well again. You just need to ask yourself what changed in your life that allowed the cancer to return. It is very likely you can turn this around again. Thank you for sharing. It is wonderful to have a medium which allows us to share our stories and to give each other hope. Hugs Marlene

[Red1246 in reply to viennagirl]

Thank you, Marlene, for your encouragement. I hadn’t thought of it that way but will now. 🙏🏻

Big hugs,

Kathleen

[Red1246 in reply to viennagirl]

Thought about this a lot today, Marlene. I had a very stressful job as Director of Development for a well-known NPO. Under a lot of pressure from Board and ED for 3 years. I'm sure this contributed greatly to my present situation. I retired end of 2018 in time to be diagnosed with DCIS in right breast. Beat that and then current diagnosis (metastasis to spine and 2 lymph nodes) May, 2019. So 1) I'm now retired so stress is greatly reduced and 2) I must be strong to have beaten the two previous breast cancers. I am hopeful and thank you for your input! hugs, Kathleen

[Kiera49]

Welcome to the group, I have lung mets and in the bone as well, was diagnosed feb 2019 so about 1 year. IM ON Ibrance, letrozole, zoledex and denumab, probably not the right spelling lol.

[Phillipians4and6 in reply to Kiera49]

Thank you ❤️❤️❤️

[viennagirl in reply to Kiera49]

Hi. I hope you are feeling well. You are taking quite a few drugs at the same time. I hope you get positive results. Hugs M.

[Hidden]

Hi,

Welcome to this group! I echo what the other ladies have said. This is a very supportive group. We understand what this life is like, and can draw comfort from sharing our feelings with others who are going through the same thing.

Sophie

[Phillipians4and6 in reply to Hidden]

Thanks Sophie. ❤️

[hopenowandtomorrow]

Hi Philippians4and6, I love your name! Good verse! Welcome to the group (so sorry you have mbc)! Glad you are doing well on your meds so far. I am on my 11th cycle of IBrance/Faslodex/Xgeva. I had a bone met in the left pelvis after 2.5 years of “survival”. In Nov 2019 the PET scan showed no evidence of disease (NED). Still on the meds for life. Thankful to God! ❤️🙏❤️

[Phillipians4and6 in reply to hopenowandtomorrow]

Yes indeed. Thank you Lord. I’m so happy you shared your testimony and yes that’s my favorite scripture. I’m looking forward to great day. Thanks so much again for sharing.

[viennagirl in reply to hopenowandtomorrow]

Thank you for telling us that you no longer have evidence of the disease. Why do you have to remain on the drugs? Does your doctor think the disease will come back if you go off the medication? I want to eventually get off my medications but that might not be practical. Right now I feel quite good on my Ibrance and Letrozole. A bit tired at times but my tumors are shrinking so I was hoping to get healed completely and be able to go off the medications. I hope you can also get well enough to stop the drugs. I am on a vegan/vegetarian diet with they occasional meal of sea food. It does make me feel healthier. And I have taken steps to reduce my stress levels which some naturopathic doctors believe is the cause of most of our modern illnesses. Hugs M.

[hopenowandtomorrow in reply to viennagirl]

Hi Viennagirl: Once you have stage IV cancer, you stay on the meds until your cancer outsmarts the treatment & starts growing again. NED May last months or years. You never know but NED is no guarantee going forward. NED is proof that the current treatment is working. That’s what I’ve been told. ❤️🙏❤️

[8576]

Welcome to this group. I have found it to be a great source of inspiration, information and comfort.

Cheers, June S.

[Red71]

Welcome! I had 8 years before it struck again. It is a shock, but this group is a real great bunch of shock absorbers! We will be around when you need advice or just a pat on the back. Elaine

[Phillipians4and6 in reply to Red71]

Thank you Elaine ❤️

[SeattleMom]

Hello!

So sorry for your diagnosis, but you have joined a compassionate, empathetic, and understanding group of fellow patients!

Like you, I had a long "cure." Diagnosed with BC in 2000, followed by double mastectomy, no other follow-up (no node involvement and Stage 1 size tumor in one breast.) My shocking discovery occurred in 2017; now into third year of treatment with Ibrance and Letrozole combo. Everyone's side effects are so different. Mine is typically fatigue after third week of Ibrance.

God bless you and keep you hopeful, too!

Linda in Seattle XXOO

[Phillipians4and6 in reply to SeattleMom]

Hi Linda. You just don’t know how much your encouragement means to me. Then again you probably do. ❤️❤️. Thank you sooo much. 17 years is definitely a long “cure”. You got this!!!!

You be care out there in Seattle with the spread of the virus. I spoke with someone today that works at the Gates Foundation. He said everyone was being cautious.

[SeattleMom in reply to Phillipians4and6]

GOD BLESS YOU!!

And yes, so amazing that the virus has so far resulted in deaths in King County, Washington only. My mom just passed on in August and in her final days, spent about two weeks at the hospice connected to Evergreen Hospital in Kirkland where the first patients of CV died. Such a sad and frightening situation for so many!

Please know that all of us have hopes for continued new treatments being discovered and made available that will keep us going for years to come! Paraphrase: "I am ready for anything through the strength of the One who lives within me."

Love to you! Linda

[Phillipians4and6 in reply to SeattleMom]

❤️❤️❤️❤️❤️❤️

[viennagirl in reply to SeattleMom]

Thank you Linda. My sister told me that Ibrance and Letrozole healed her dental assistants' sister. I hope I get a chance to talk to this person. I would like to know more about her treatments. I have been on this combo for 9 months and so far it is helping me. I wish you the best. Hugs Marlene

[SeattleMom in reply to viennagirl]

Same back at you, Marlene!! ❤️❤️🙏🏻🙏🏻

[Barbteeth]

Welcome!

Mine came back after 24 years...what an awful shock

Now on my second line of treatment after Ibrance and letrazole failed...now on Afinitor and aromasin...I’m assured there are lots of treatments

Barb xx

[Phillipians4and6 in reply to Barbteeth]

Wow Barb. I’m sure that was a shocking. Hang in there. We will do this together. Whatever I know I will share and I can definitely listen.

[Barbteeth in reply to Phillipians4and6]

Thanks so much

I’ve been metastatic now almost two years but still wake up sometimes and have forgotten about it....then it hits me again and I start crying...I then say to myself

‘Get up Barb...get a shower and some make up on and get out’....works most days

All the best to you

Barb xx

[Phillipians4and6 in reply to Barbteeth]

😘

[Teddielottie]

Welcome on here ... just wanted to wish you well since you have recently commenced on the Ibrance protocol . I have been on it for 28 cycles ( I was Mets de novo just over 2 years ago ) and so far have tolerated it well , so I wish you the same . The main thing is to always keep well hydrated ( that may help the headaches) . If there is anything you want to know just ask ! x

[Phillipians4and6 in reply to Teddielottie]

Thank you so much. The responses have just been simply amazing. I am working on increasing my daily water intake.

[viennagirl in reply to Teddielottie]

Thank you for the tip on staying well hydrated. Hugs and best wishes for a complete recovery. Marlene

[kduck]

Welcome to this group of wonderful women! Are you still working as a principal?

[Phillipians4and6 in reply to kduck]

Hi. Yes I am. I go everyday for now. Hopefully I can keep working.

[Totheriver]

Welcome to the group. The ladies are helpful and so compassionate. I also had a remission of 17 years so this was a shock. I am also on ibrance and letrozole and seem to be tolerating the lowest dose.

Nice to hear how others tolerate certain drugs. Hope your journey goes well..💕

[Phillipians4and6 in reply to Totheriver]

Thank you so much ❤️

[AuntyJane]

Welcome to the group! 🌼 I’m also on Ibrance and Faslodex- just completed 6th round. Mets to lungs. Mine came back first time after 15 years and second time after almost 10 years. I’ve learned a lot from the ladies here and everyone is so supportive - taking one day at a time.

Proverbs 3:1-30

Trust in the Lord with all your heart;

do not depend on your own understanding.

Seek his will in all you do,

and he will show you which path to take.

Blessings to you🙏

[Phillipians4and6 in reply to AuntyJane]

Thank you so much Aunty Jane. Such a great testimony and I love that scripture. Great way to start my day.

[Tam-56]

Welcome to the club no one wants to join but we all support each other in love and knowledge. It is my go to place when I need help. On Ibrance/Letrozole two years now and presently stable, shrinking and calcification ...that is fine by me! ❤️

[Phillipians4and6 in reply to Tam-56]

I would say that’s fine also. Lol. Thank you so much for welcoming me.

[viennagirl in reply to Tam-56]

Thank you for the encouragement. I am on that same combo for nine months and having positive results.

Since getting ill I have realized that I will have to learn how to take care of myself if I want to heal and stay well. I believe that because we are women we are often very self sacrificing and one of my biggest challenges is letting others do things for me and not feel I that I have to be there for everyone. Being honest and saying NO is a big challenge for me. I suspect that this plays a big role in why we women get sick. It is not easy learning how to take care of oneself when we are usually the care givers in our families and in our jobs. My family is scared because I was always the strong one in the family. They liked having me to rely on for emotional support. So now my family has realized that I am fragile. They have started to be more helpful and more aware of me as a person. And they respect my right to say NO. But I must admit it is still hard and I have to remind myself all the time that I don't have to do things I don't want to do if it is going to cause stress. My wish for all of us is to learn to truly love ourselves as much as we love our family and friends and employers.

Hugs to all you wonderful and caring ladies.

[Phillipians4and6 in reply to viennagirl]

Such powerful and truthful words!!!!

[mariootsi]

Welcome! Glad you found this group!

[Phillipians4and6]

Awww Thank you Sandra. I’m so happy to have you all on the group and I can’t say enough how much I appreciate your kind words and your wisdom. Some of the other ladies said more water and I’ve been doing just that. I can really feel the difference when I drink more water. Thank you. Have a good weekend.