Update finally on treatment

[monkeygirl62]

Hello ladies and gentlemen, I am finally on treatment, it took nearly 4 months from dx to treatment (due to moving from South Carolina to Seattle area). I am on Ibrance (Dec. 13th) and letrozole (Nov. 16th). And I am on palliative care for pain management since I have neuropathy in my left arm and hand. I can't use the hand much at all. I have body aches like crazy on the letrozole but no side effects from Ibrance. At least I am doing better in terms of crying, not as often anymore. Even with the opiate therapy I still have 24/7 pain level at 5-6. It's the best they could do but hopefully treatment will shrink the tumors that are causing the pain since it's been six months of nonstop pain. I am ER+, HER2 negative with numerous organs involved. No bone or brain mets though. I do have more tests coming on the left ovary though, my grandmother had died of ovarian cancer at age 45, so they are watching this closely. I read everyone posts it gives me a lot of information and hope. Thank you all for all the support you give one another.

[Fiercefighter13]

Hey there Monkeygirl62, I am so sorry to hear about this difficult road you join us all in. I understand how you are feeling. We are generally neighbors, I am in the Vancouver WA area. I had a tremendous amount of pain when I was first diagnosed with Metz in 2019. They found it in my spine, both sides of my pelvis, many ribs, and clavicle. I had gone through so much pain before being diagnosed for many years that I could barely bend over walk or move. The good news is Ibrance and letrozole tamed the pain down to the point where I was feeling quite fantastic for a few years. I’m hoping it does the same for you. I have to be honest it’s a hard journey, but it’s doable. I’m almost 5 years down the road I have good days and I have bad days. I still have days when all I want to do is cry, there’s no getting used to this diagnosis. At the same time, I have to say, the past five years have been a blessing, and I have found many reasons to laugh, smile, love and find joy. if you have just started this journey, you have many medicines ahead of you, and that means time! Try to live in the moment. I hope and pray for you, that your pain goes away, like it did for me, and that you find many reasons to smile again . Right after I was diagnosed with bone Metz I had my ovaries removed and they found the darn errant cells in my ovaries on biopsy. A little over a year ago it had spread my stomach and colon. I’m on my fourth line of medicine, and it is working like gangbusters, my markers are in the normal range after never being normal on all the other therapies. My mom passed away breast cancer and also had pancreatic cancer. Like I said, it’s not an easy journey but as hard as the road may be, it’s definitely a journey worth finding the good in. Take good care and wishing hoping and praying the best for you. !

[monkeygirl62 in reply to Fiercefighter13]

Wow five years that's awesome. I am sorry about your mom. I do as much as I can with this pain. I am concentrating on making memories with my family and ignoring the beast of burden. I know I am just beginning this journey and I keep thinking "someday" I will be back to normal. It's wishful thinking. My cancer subtype is aggressive so I am hoping Ibrance stops it's fast growth and I can breathe a sigh of relief. Thank you for your support and prayers. It helps so much to share what's going with me with others that are going through the same journey. Thank you and God bless you.

[TwithBC in reply to Fiercefighter13]

…beautiful.

[TammyCross]

I had so much pain from letrozole (mostly hips) that I switched to anastrozole. It wasn't perfect, but better. Still had pain in groin and shoulder that somewhat limited movement. Now I am on exemestane and just a bit of soreness and stiffness. I would recommend trying other AIs to make your life easier until the treatment resolves the mets.

[monkeygirl62 in reply to TammyCross]

Thank you for your reply! I will talk to my oncologist about switching. Glad to know others walk this walk too. Without this MC group I would feel so alone. So thank you 🙏.

[2020Dolly]

Glad you are doing better. I’m on fulfestrant and Kisqali. I have a lot more aches and joint pain now. Been on treatment 11 months. MBC to bones

L

[monkeygirl62 in reply to 2020Dolly]

Thank you for your reply ☺️!! I just realized this morning (it's my week off of Ibrance) that my body aches are not as bad. I think Ibrance is contributing to the body aches. I get you when you have the aches. I don't think I have joint pain just muscles. What does the joint pain feel like? It takes me about two hours to get moving around in the morning to loosen up. I will take the aches over this cancer anyway. My sister got me a pink T-shirt at Christmas that says "Cancer Sucks". I had to laugh 🤣 because it sure does.

[Aprilfoolz1]

What a relief to start treatment , I am sure . Re pain, talk to your onc about switching up the AI like TammyCross suggested . Hang in there. We are in your corner with prayers that the Ibrance and femara kick in and shrink the cancer which will reduce your pain.

[monkeygirl62 in reply to Aprilfoolz1]

Thank you Aprilfoolz1! Oh I now have a regular schedule at Fred Hutchinson!! So January 11, January 25 and February schedule too. If you want to DM me and maybe my schedule might match with any of your days to meet for a coffee?

[Aprilfoolz1]

I go in to Seattle March 11 and March 18th . I get my monthly blood work done at a Fred Hutch satellite clinic closer to where I Iive but go in quarterly for scans and then to see Dr Symonds in person. love to meet up if these March dates work for you