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MaineRottweilers · 03-17-2016, 04:53 PM

Hey, Jessica. Thanks for checking in. I haven't been doing great, a lot of pain, nausea and fatigue. I took a three week break from chemo to get feeling better before we hit it hard again. During my break, I went to visit my family in Sarasota. Sunshine therapy and baby (my sister's) therapy do more than chemo could ever do. I came home really feeling positive and less fatigued with no nausea. My pain has advanced though, it's still all bone pain so that is encouraging. I have scans (CT and Bone)on the 28th and I will know better if this chemo is doing anything. Hoping the pain is just Zometa doing its thing.

I got myself in a bit of a funk. I applied for (and received) accelerated death benefits on my life insurance policies and my retirement. My MO signed off on less than a year life expectancy, of course he told me that it didn't mean that I would die in that time frame, just that he can't say I won't. His actual medical notes do say life expectancy of 12-24 months. That was tough to see in writing and I don't think he ever planned for me to see it. The insurance company shared it. I'm not giving up, just got a serious glimpse of reality. I want to live. I plan to live. Cancer is scary. I could get on the right treatment and have decades of remission. I could die before the leaves fall again. The uncertainty is what wears on me, that and the weekly visits to chemo room. I love the people I take treatment with, they are sweet people who do not deserve to suffer the way I see them suffering. They are all older, decades older than I am so it is a pretty grim atmosphere. ...and it's been rainy and raw all week. I am SOOOO looking forward to Spring doing its thing. I need to feel the sun on my face to get out of this funk, soon, soon enough. I just need to keep treading water until the weather breaks.

Sorry to be so grim. I get quiet when things aren't going well, withdrawn. Thanks for calling me out. How are YOU doing? Are we still looking forward to a retreat?

03-17-2016, 04:53 PM	#23
MaineRottweilers Senior Member Join Date: May 2013 Posts: 570	Re: Weekly Taxol for Stage IV Hey, Jessica. Thanks for checking in. I haven't been doing great, a lot of pain, nausea and fatigue. I took a three week break from chemo to get feeling better before we hit it hard again. During my break, I went to visit my family in Sarasota. Sunshine therapy and baby (my sister's) therapy do more than chemo could ever do. I came home really feeling positive and less fatigued with no nausea. My pain has advanced though, it's still all bone pain so that is encouraging. I have scans (CT and Bone)on the 28th and I will know better if this chemo is doing anything. Hoping the pain is just Zometa doing its thing. I got myself in a bit of a funk. I applied for (and received) accelerated death benefits on my life insurance policies and my retirement. My MO signed off on less than a year life expectancy, of course he told me that it didn't mean that I would die in that time frame, just that he can't say I won't. His actual medical notes do say life expectancy of 12-24 months. That was tough to see in writing and I don't think he ever planned for me to see it. The insurance company shared it. I'm not giving up, just got a serious glimpse of reality. I want to live. I plan to live. Cancer is scary. I could get on the right treatment and have decades of remission. I could die before the leaves fall again. The uncertainty is what wears on me, that and the weekly visits to chemo room. I love the people I take treatment with, they are sweet people who do not deserve to suffer the way I see them suffering. They are all older, decades older than I am so it is a pretty grim atmosphere. ...and it's been rainy and raw all week. I am SOOOO looking forward to Spring doing its thing. I need to feel the sun on my face to get out of this funk, soon, soon enough. I just need to keep treading water until the weather breaks. Sorry to be so grim. I get quiet when things aren't going well, withdrawn. Thanks for calling me out. How are YOU doing? Are we still looking forward to a retreat? __________________ Tracy Arcari ___________________________________________ 11/12 BSE ignored the lump for SIX months. 5/1/13 IDC ER/PR- HER2/neu+++ 5/14/13 Mastectomy and SN biopsy 5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue. 5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline. 6/4/13 Installed my little purple power port. 6/14/13 Chemo started TCH 6/14/13 Informed of suspicious ares on scans scheduled PET. 7/1/13 PET Scan NED! 9/27/13 FINAL CHEMO taken! ----well, maybe not. 10/15/13 Three little tattoos. 10/24/13 Radiation begins and fourth tattoo placed. 11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter. 1/2/14 Happy New Year, you have a Goiter? Muga down to 59%. 1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER! 5/2/14 Herceptin completed! New kitten! 8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR. 2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision. 4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready. 5/4/15 Brain MRI clear (big sigh of relief) 7/30/15 Back Pain 8/31/15 Radiograph: compression fracture L2 9/10/15 Bone Scan positive 9/21/15 CT scan conclusive for tumor 10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing. 10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary. ER-/PR+ (40%) HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells. 10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine. 10/14/15 Radiation consult back to the cooker. 10/20/15 MUGA 50% down from 54% after a year off Herceptin (???) 10/21/15 Kyphoplasty L2 10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere 10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!! 10//29/15 Xgeva 10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty. 10/30/15 CA27-29 63 U/mol (<38 U/mol) 11/3/15 First Trip to see Dr. E. Mayer at DFCI 11/4/15 Surgical consult to re-install my little purple power port. 11/9/15 Radiation treatment one of five. 11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today. Yes, we really are going down this road again. 12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets. 12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15) 12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B. 12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working. 1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva. 3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????) 3/31/16 Discontinue Taxol start Arimidex, still getting H&P. 6/2/16 Discontinue Arimidex and start Exemestane. 6/18/16 PET is NEAD!! 7/1/16 Discontinue Exemestane and restart Armidex (SEs) 8/29/16 CT/Bone Scan Stable (still uptake at T10-11) 10/3/16 BSO pathology negative 10/10/16 MRI: Brain clear! 10/14/16 Switched care to Harold Alfond Center for Cancer Care 11/24/16 Xgeva, New MO preference to Zometa 12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET 1/12/17 PET shows NEAD celebrate with a new puppy! 3/29/17 CT & BS = NEAD 7/31/17 Aetna denies access to H&P <gearing up for a fight> 8/4/17 CT& BS= STABLE 8/9/17 No treatment, Aetna still denying H&P 8/14/17 Aetna appeal approved H&P through February 2018! 2/5/18 CT & BS = STABLE //