Not doing well, Need Mets Advice & Friendship please!

I haven’t posted in a while, but I’m overwhelmed and really needing some help. Sorry this is so long, but it will give you the full idea of what I’ve been going thru since original Dx, both physically and emotionally.

My original BC Dx was in October 2011, and MBC Dx in April 2017. And in those 5 1/2 years in between, I have had MANY health items evolve, causing all kinds of chroinc issues. Here’s my timeline:

• 11/11 - Bi-lat Mast 6cm Tumor, Sentinel Node removed (initially thought neg, later Path showed positive).
• 12/11 - Second Surgery, wound reopened, not healing, drain problems.
• 12/11 - Started 4 rounds Taxotere/Cytoxin Chemo
• 3/12 - Started Tamoxifen for 5yr treatment
• 11/12 - Spinal Thoracic Laminectomy Surgery, Meningioma Tumor Pressing Spinal Cord
• 1/13 - DVT Blood Clot In leg
• 6/13 - Dx with PMPS (Post Mastectomy Pain Syndrome) & PLPS (Post Laminectomy Pain Syndrome)
• 7/13 - Switched from Tamoxifen to Anastrozole (Arimidex) due to risk of more clots w/Tamoxifen
• 8/13 - Fell, Displaced R Kneecap, pulled ligaments, chronic issues
• 5/14 - Fell again, injured R Knee, Hip & Ankle
• 6/14 - Gallbladder Surgery w/issues and drain
• 9/14 - Dx with Vertigo, chronic issues
• 1/15 - Dx with Benign Essential Tremors
• 6/15 - Refrative Eye Disorder, Optic Procedure.
• 3/16 - Dx with Gastroparesis, chronic issues
• 9/16 - Heart Issues, Palpitations, Shortness of breath
• 3/17 - Dx with Paroxysmal Atrial Tachycardia, chronic issues
• 3/17 - Finished 5yr treatment of Tamoxifen/Anastrozole. I was SO happy to get rid of the awful side effects of the AI's! But that joy didn't last long.

Yes, that's a lot of sh*t within the 5yrs between BC Treatments to MBC Dx! So many issues, medications (Including Morphine 24/7) side effects, and daily pain that will never resolve. Many days I feel so horrible, or have uncontrollable breakthrough pain, that I can’t do anything. Also during this time, I lost my Dad to Alzheimer’s, my BFF to Cancer, I had to go on Disability, along with Medicaid and Food stamps, and lost my house. Then my two other close friends of 10+15yrs ditched me, I know it’s common with our issues, but it still hurts like hell. I was ready to throw on the towel even before MBC Dx! Then one month later......

• 4/17 - In ER w/flank Pain, CT showed incidental findings of Large/Abnormal Axillary Lymph Nodes. (I had been having some pain in that area, but just figured it was more PMPS pain)
• 5/17 - Biopsies confirmed Recurrent BC, PET scan then confirmed additional Metastasis
• 5/17 - Dx Stage IV MBC w/Mets to Axillary, ParaTracheal & Mediastinal Lymph Nodes, Scapula & Spleen
• 5/17 - Started Xeloda Chemo
• 9/17 - PET/CT: Some areas slightly better/some worse, new multiple nodules both lungs. TM’s rose monthly
• 9/17 - Switched from Xeloda to Ibrance & Faslodex
• 10/17 - Dx w/Diastolic Disfunction of Heart, left Ventricular & Atrial Hypertrophy, Tricuspid Regurgitation
• 11/17 - Nerve Pain & Numbness from Axillary area, down arm & hand/fingers
• 1/18 - PET/CT: Again some areas slightly better/some worse. Lung Nodules went from 3mm to 6mm. TM’s still steadily rising. Onc wants to give treatment one more try, will Re-scan in one month.
• 2/18 - Again, some areas slightly better/some not. Uptake in lungs a little lower, but Radiologist didn’t give measurements for sizing. TM’s down a little. Continuing w/Ibrance & Faslodex. But, every month my nerve issues and pain in R arm have worsened, it is now affecting the entire Axillary area in front, the armpit going 8” down my side, and shoulder going all the way down to fingers. Numb areas, pins and needles, burning, and constantly moving and changing stabbing, aching, and throbbing pain, sometimes I can’t even let my arm relax against my armpit or side. Making me not be able to use my cane, among other things, since I’m right handed. Also I’ve had balance issues different from my vertigo, been very wobbly. So I pushed for MRI’s, Onc agreed.
• 3/18 - 1st MRI, Brain, showed two lesions, one in L Frontal lobe & one in L Cerebellar Lobe. 2nd MRI, R Axilla, showed 4.3cm mass adjacent to Brachial Plexus Nerves (causing all the pain and numbness issues), and a smaller mass at T1-T2 level. Neither of these masses found on prior multiple PET/CT scans, nothing seen even two weeks ago! And I’ve never had Brain scan since Mets Dx. So, how long have all these tumors been there? Since beginning, since Xeloda treatment, since start of Ibrance/Faslodex? Ugh so frustrating and scary! Makes me wonder what else is brewing in my body that the PET scans aren’t finding!

I got these results by email on Thursday, and my Onc left for two weeks vacation Fri. So I won't get to talk to him until my appt the day he comes back, on April 5th! Email said he spoke with Onc Radiologist, who says Radiosurgery 1X for each Brain Tumor (don’t know which kind), and Radiation probably 5X to Axillary area. Didn’t mention spine tumor. He also had me start Steroids immediately. Woman from Radiologist office called same day, and said they don’t have opening until April 5th, but the the Dr didn’t want to wait that long. She’s going to talk to him and call me back on Monday. I’ve never had any rads before, so I don’t know what to expect, side effects, etc. So I need advice on that please! I’m left wondering and worrying, without having a Dr to talk to, until I can get an appt!

As for the friendship request, I need some! Before BC, I got divorced, after cheating husband of 25 years left me, so I instantly lost half my family, and also most of my friends. Even though they sided with me, no one knew what to do with a single person, they were all married with families. I have two grown sons, but at that time, they were graduating from high school, so all those school and team friends went goodbye too. Then my ex quit paying the alimony he was supposed to. I had to go to work full time, and still couldn’t make it, rented out rooms, which was awful. At least I had work friends now. And I started making some new single friends too. Met my BFF, and two other very close friends, we did everything together. They would even come over and spend weekends at my house. Then my BFF got cancer, not sure where it started, Stage four from the start. It kept progressing to different areas, as it does. I was Dx with BC two years into her fight, and she died 2 1/2 years into mine. Then all the medical problems I mentioned before followed. My other two good friends helped me move out of my house, and I haven’t spoken to them since. They just disappeared without a reason, and unfriended me from FB. And the move from my house also left all neighborhood friends behind too.

I have been a huge people person all my life, always had the house that everyone hung out at, both kids and adults. I always hosted every friend, family, get-together and holiday. Now I’m alone in a tiny apartment. Since I went on disability, not one person I worked with for seven years contacted or checked on me. And I have 5 siblings, and we get together for holidays, but nothing in between. The locals will get together for Easter soon, but I haven’t heard from any of them since the Xmas gathering. They all know what’s going on with me, that I live alone, and am having a hard time. They say they feel terrible for me. But not one ever calls or texts, to see how I am, or if I need anything. One brother and sister-in-law of 38 years, even drive right past where I live every day to and from their work. I don’t get it. And My beloved mother passed away in June, right after my MBC Dx, I didn’t tell her about it yet, she would have been so upset, she lived in an assisted living facility since my dad died, and she always felt so bad that she couldn’t help me during my original BC. So I was going to wait until I knew more, before I told her, but then she got pneumonia and fluid packed around her heart, and she died within a week. I’m still devastated, I miss her so much, I was closest to her, and the most like her. She had multiple medical issues, and lived with chronic pain half her life, so she was someone who I could talk to who would understand. And if she knew how my siblings aren’t helping me, she would be heartbroken. So, after years of 100 friends and family, I’ve dwindled down to none, something I would never have imagined in a million years.

My only saving grace are my two sons and four grandkids, I live for them. One set I don’t get to see very often, even though they live very close. My eldest son Geoff, is my angel. He is the only help I have, he’s always been a wonderful person. He works loooong hours, being the GM of a restaurant, but will help me at the drop of a hat if I ask. But I don’t want to burn him out too early in this journey. I babysit for them 3 or 4 evenings a week. It works perfectly because I can sleep in until the afternoon if needed, and he pays me to help make my rent, I couldn’t afford it otherwise. I would babysit for free, his girls are the youngest grandkids, 4 & 6 1/2, and they adore me as much as I adore them. They don’t know about cancer, they just know I am sick, but not the kind of sick you can catch, so sometimes I am tired or hurting and can’t do much. They understand that, and on those days we just watch movies and read. I tell my son everything, and he is devastated by this latest news. But I don’t want the only thing he hears to be cancer crap. So I really need someone else to confide in and talk to, some friends! Some MBC sisters! When I first joined here, I tried getting in posting on threads, but it was so hard, with others already connected, I always felt like the fifth wheel, and was ignored by some. So I wandered away and joined some FB groups, which are great, but it’s not the same as a website like this, where you can really talk with others, and get to know them. And this time I decided to start my own thread, and really introduce myself, hoping that would make it easier. So hopefully at least a few of you bit the bullet and read this far, and will be ready to jump in with me! I would love any advice and support from you ladies, and would love for you to share your stories, so I can get to know you too! Thanks so much for listening. 💜

Thank you Georgia.

oh , Miimi! You have been through way too much. I’m so very sorry. My heart is always open for a new friend.

Thankfully you have the attentive son. I swear people think we are contagious....it is crazy. Or perhaps people pull away because they are afraid we are dying. Maybe you should just ask your former bffs.

Hope today is better and this week you will find out ant treatment changes. Soft hugs...I know that PMPS doesn’t welcome big hugs.

beatmon

Hello Vali and welcome. I am not a doctor but I believe chemotherapy is standard for triple negative breast cancer in the United States also. You might look at the websites of breast centers at MD Anderson and Johns Hopkins since I have heard that they can review pathology reports and then consult via Skype. Best wishes.

Sorry you’ve been through so much. Just FYI, there’s plenty of room at our table, if you’re interested. We saved you a seat and I have an open tab

https://community.breastcancer.org/forum/8/topics/856706?page=113#idx_3372

Key51-sorry you have to join us, but you are welcomed. I was on Ibrance/Femara for 16 cycles and tolerated it well. Fatigue and joint pain were the most bothersome for me, but generally I functioned. There is a thread for those on Ibrance-check it out, I think it will help you. This is a whopping diagnosis to adjust to. We all are left numb and reeling for quite some time. There is life with MBC, but it takes adjusting. Be gentle with yourself and ditch things that aren't really important to you. Best MJH