Staying alive

[Gemgardens]

Hello, I am new here. I found this forum when I started Ibrance. I have been on it almost 3 weeks in addition to faslodex. Before this, my cancer had stayed back with letrozole since 2014. I originally had BC in 2001 and it came back in the other boob in 2013. I started Mets last year. I have it in the bones, it just went into the liver. I had switched oncologists and cancer centers about a year ago because my oncologist and nurse wouldn’t listen to me. I like my new team but they are 50 miles away. I will be 60 this year.

I’m grateful to hear about everyone’s experience. .i live with my husband and little dog Tootsie Roll. I’m so grateful for them, this would be so hard to do single! I see suggested tags but I don’t know how to put them on. Sometimes, I feel afraid of dying alone like we all do, but I mostly distract myself by reading and trying to help others.

These lung and breathing problems are so confusing. I e had problems with right lung and Ibrance seems to make breathing harder. Does anyone have tips for this? My 72 year old husband has COPD so now I can relate better. We just have to laugh when taking a shower feels like climbing Mt. Everest!

Ps I’ve had cancer a long time, I was just diagnosed with Mets to bones and Last month liver. Scary stuff!

[Have-faith]

Welcome to this site. You will hear many stories and learn that you are not alone. How did you come up with the name tootsie roll for your pup? Is he a daschund? Cute name.

I agree that this is scary stuff we are dealing with. It is because of the unknown part of it and the wo during if the cure will appear in our life times. This disease makes me live more in the moment and focus more on me which I neglected to do in the past. This helps me manage. I try to muster up the time and energy to do things I like on a weekly basis instead of just working and having monthly doctor's visit. Church, a class or workshop here or there on a new topic, reading, embroidery, walk my dog.... and sometimes just chill on the couch. These days cancer is more of a "chronic" disease as people live years with it. You see thru these posts that there are different treatments to try when one is no longer effective.

As for the breathing.....I was feeling short of breath myself last night. I too am on ibrance. There isnt a lot to do about this shortness of breath. I remind myself to take deeper breaths. Talking for long periods takes my breath away so I listen more now in conversations and talk softer. It can be worrisome if I focus on it....so I try hard not too.

You have been managing cancer for a long time and I think you will continue too for a long time as well....stay positive and always keep informed. Be your best advocate. This site will help you in many ways.

Faith.

[ArizonaGramma in reply to Have-faith]

I was first diagnosed in 2014, went through 16 weeks of chemo, two surgeries and radiation. I took Tamoxifen for a month and was sick the whole month. I wish I had been offered Letrozole but was not. I had trouble with bone thinning before this and did not want to take something that made my condition worse, so took nothing. We monitored blood and scans and did well on nothing until 2017 when it blossomed in a scan and it was quick that blood CA numbers blew up and I was a Stage 4 MBC to the bones. One month. So now on Letrozole and Ibrance and numbers that had reached a thousand are now 120 last test. I test antigens once a month. So this is not a cure but a good step to remission. I am 73, feeling pretty good. The side affects come and go. Three weeks on the Ibrance was too much at once, but rather than reduce the dose we tried two weeks on and one off. This is working for me. I am not missing any of the 21 pills I just take them differently in the four week period .The worse for me has been constipation and hair thinning. My hair breaks off and I take Biotin but it still happens. I haven't gone bald, but it is very thin. So think positive because this is a target therapy for the cancer we have and don't have to go through those awful months of weekly infusions. I never say I am a cancer survivor, because remission is not a cure. Cancer does come back eventually and I feel fortunate that there is a more targeted therapy this time around. Best wishes to you and yes God Bless us all.

[Gemgardens in reply to Have-faith]

Thank you for the inspiration. I’m already breathing better with 2 days off Ibrance. I was going to finish my first course Thursday this week & was getting my first blood tests as well. I’ve really felt encouraged to hear pleural effusions have disappeared for some people as well. I have onc apt. Monday next and pain doc today. Some people take lower doses of Ibrance or two week cycles which I will ask about. I was hoping faslodex would work alone but Mets was still progressing.

Tootsie Roll, my favorite topic! We believe she is half chihuahua & half min pin. I got her from the humane society after my lab Coco Puffs died from cancer 2 years ago. My husband wanted assurances that I was going to live long enough to take care of her. That was a lot funnier than it sounds!

The humane society had named her Tootsie Roll & she had 4 puppies named after candy bars, Charleston Chew etc... I was going to change her name but she seemed comfortable with it, so we kept it. Now mu husband loves her as much as I do & they will help each other if I leave first. We try to walk 2 miles a day. Not always possible & Saturday Ithought I was going to suffocate on the Ibrance and had to stop. I better go call onc now. Thank you everyone for your experience and hope!

[Hidden]

Hi Gem,

Welcome to this site! We are a friendly bunch of ladies (and men too) where we try to support and encourage one another.

I'm glad you have a new oncologist whom you feel more comfortable with. We have to be able to talk to our medical team and feel that we are being listened to.

It's really good to hear that you have a supportive husband and a loving dog too. My Russian Blue cat, Jack, is my baby. He is a real love bug and loves nothing better than jumping up on my lap for a cuddle! He is actually laying down beside me on the couch as I type.

Take care,

Sophie x

[Gemgardens in reply to Hidden]

Thank you Sophie. I have already learned so much here! Not least of all, the comfort of animal therapy. I enjoyed the thought of Jack sitting next to you. The best medicine!

[Hidden in reply to Gemgardens]

You're welcome! I feel the same way. I have also learned a lot from this site, mostly that there really are others out there like me and that this condition can indeed be treated just like any other "chronic" illness for years to come. Pets are great medicine! I love Jack! I also run my own pet sitting and dog walking business, so I derive a lot of satisfaction from that too.

[Gemgardens]

Miniature eskimo dogs? I have to look that up, they sound adorable! I try to get 2 miles walking done with my dog but haven’t been able to since Ibrance.

[mariootsi]

My boyfriend has copd too! We have lived together a long time. We both fell apart at 60 also! Me with cancer and he with copd, arthritis in both knees and bipolar disorder. What a mess! But we support and love each other through life's ups and downs! We are in it together as you both are and it is very scary for us too! I wish you both well! Love, Marianne