New to the Forum

[Teddielottie]

Hi, I’m Teddie, and I was 53 years old and post menopausal when I was diagnosed with bone mets in Dec 2017 (x2 hotspots in pelvis – left iliac bone, and left inferior pubic ramus).

I turned 54 years young this January, and had my first normal mammogram at the age of 50.

I was devastated when told I had bone mets. This was a huge shock because it was a routine screening diagnosis, and I had no idea of the underlying problem, and had no obvious symptoms. Additionally I was regarded as low risk having never been a smoker, and having no known family record of breast cancer. I’ve been a vegetarian for 30 years, low weight, and have enjoyed a relatively fit & healthy lifestyle (a mother of one, and proud owner of two lovely King Charles Spaniels). I still manage to walk 2 miles every morning with my dogs, which has kept me going in the last 5 months.

In NOV 2017 I had a right mastectomy, and axillary clearance (x16 out of x18 nodes were affected), with immediate reconstruction. It was discovered that I had grade 2 invasive ductal carcinoma breast cancer HER2 negative.

There was no other bone disease seen on CT scan, and no other evidence of visceral metastases.

I am based in the UK and in NOV 2017 Palbociclab (Ibrance 125mg) was given NICE approval and so I was put onto this course of treatment along with Letrozole (2,5mg). I haven’t had chemotherapy or radiation therapy to date.

I am a couple of months into this treatment and although I have some common side effects such as some tiredness and general aches and pains, and not sleeping as well as normal, and looking a bit pale. Other than that I am generally feeling ok. I have taken one of your wonderful recommendations today and bought a heat pad which is immediately helping a lot. I take ibuprofen sometimes, but try to avoid taking pain killers if I can.

I think I may be starting some hair thinning and may ask about taking biotin which some of you do. I am also trying Planteur caffeine shampoo & conditioners which I am told can help.

I have regular blood tests, and my first rescan will be after several cycles of Ibrance to confirm that there is no evidence of progression outside of known bone areas (Pelvis). So far I haven’t been put on Bisphosphonates / bone strengtheners, due to there being very low volume bone disease in these two areas.

I have read about stereostatic radiation for bone mets on this site, but don’t know if its available where I live, but will ask my wonderful oncologist when I next see her.

I am very grateful to have found this site and to read about all of your experiences, and although most of you are in the US its great to hear of some positive results about a treatment which is relatively new here in the UK. Good luck to you all.

It really helps to hear your stories and what you have all been through. I’m really happy to join this forum.

I think I’m at the stage where I accept that I have a chronic illness but want to make sure that everything possible is being done to treat the cancer.

Thanks for any information, or insight into experiences you can give, on this condition.

Its encouraging to know that a lot of you have been on Ibrance for so long, when it has only just become available on the NHS as a treatment in the UK.

Its’ been a whirlwind since I was first diagnosed with Breast Cancer in Oct 2017, but I am lucky to have a supportive husband and family, and although I’m living with it, you would never guess that I have stage four breast cancer.

Thoughts with you all.

[Gorden]

I glad that you got a chance to try the letrozole and ibrance. Bless you and your family.

[Lisa-n-AZ]

Hello, welcome to the community. I hope this site is as helpful to you as it has been to me. I am 52, was dia Feb 2017, IDC Bone (spine) and Liver Mets, ER+ PR+ and HER Neg. 4 cycles of dose dense IV chemo. I am currently on my 11 cycle of Ibrance Letrozole. Zometa every 90 days. I have been NED since Aug 17, I get a PET every 90 days and as of Feb 7th still NED. So that means the cancer is at bay. The Chemo and tumors side effects have been manageable. For me, at about cycle 9 the restless nights stopped during the 21 days on. On-cycle is a lot of fatigue and joint pain -- I'm sleeping 10 nights and taking a 1-2 hour nap each day. I think it is the due to the anemia. Shortly after I go off-cycle the insomnia kicks in. I worked intermittent all of last year but decided to retire to reduce stress and focus on me. Not working is working for me. Even as NED it's real hard to plan things in the future. But I am looking forward to booking a 2-week cruise in the French Polynesian Islands in Sept 2019. My husband and I deserve it.

I started Ibrance with no hair and happy to say I have just about an inch. Not my normal color and curly---but is better than bald. I was taking Biotin and seeing a lot more hair growth but stopped in Nov 2017. Make sure you check with your doc about Biotin. I was on, but had to stop as it can effect some blood labs (thyroid, parathyroid, heart). webmd.com/vitamins-and-supp...

I am also a Spaniel Mom. I have 3 English Cocker Spaniels and 1 English Springer Spaniel. My husband and I train and compete in agility trials. Last year was a slow year, but I have started this year teaching 2 class and training regularly. After an awkward year my Springer (almost 3yr) and I are learning to be a team once again. I can't run like I did...so we do a lot more distance. We are hoping to qualify and make it to NADAC Championships in Wyoming in Sept this year.

I'm happy to say...my first oncologist gave me 6-months do to the severity of my 6 liver tumors...and boy was she wrong!!!!!

Be strong and listen to your body. Sending Prayers your way.

Lisa

[Epinto]

We’ve to the site. I was diagnosed with Mets to the bone in may 2016. It was a shock after being ok for close to 4 years. I am also on ibrance and faidex injections and doing ok. Just take Day by Day!

[Kykakeke]

I'll tell ya - this site has been great for support and general information. We all are in the same boat - just floating along. I was dx with bone mets in May 2018. This was after 16 years of being cancer-free. You could have knocked be over with a feather when I was told the "news". I am currently on Faslodex X-geva shots and take Ibrance. Started out on the 125 dose for about 4 months, then onc switched me to the 100 because of low blood RBC. (0.9) I constantly had sinus issues all thru winter and try as I might just couldn't get rid of the infection unless I took an antibiotic. I also have anemia. Last blood test RBC was 3.2. It took a month off the Ibrance to get to that point where I feel so much better. Now the onc has m e on the 75 dose of Ibrance. Having a body scan in the fall. The Ibrance does cause hair thinning. I've been bald, had no eyebrows and eye lashes before, so just thinning I can handle. It's been a year since I started this regimen and so far, for the most part I'm doing fine and feel great. Trying to keep a mindset that a mets diagnosis is not a death sentence. It does need to be treated and meds need to be taken just like all illnesses. I will not tolerate anyone being gloom and doom around me. Or treating me any differently because I have mets. If you weren't going to do something for me before, don't do it now because you feel sorry for me. No one knows when or how things will end. I heard this from somewhere and I thought it was funny but also so true - Just look at Elvis - he was 42, fat, and on the toilet when he passed.

I'm always hopeful that good things will happen for all of us. So many new treatments and medicines out there. If we all hang on...