Ski Rossi @ford1929 & Helen - Nature Girl @naturegirl5 and others: Came upon this support group by accident & so glad I did. Dealing with 2 Stage 4 cancers since 2019 & been using the Mayo since with numerous posts - Breast ( Lobular & Ductal), spread to my skin and Mullerian origin - probably Ovarian but issues in Peritoneal and elsewhere - found when I got a brain tumor. Still have all my reproductive organs which we constantly debate about. At Moffitt Cancer Center but use Yale Smilow in summer/fall. Additional opinions from MD Anderson & Sloan Kettering. Knowledge is important BUT there can only be one leading doc/organization. Yale specifically said on several occasions that they disagreed with Moffitt as it was not Standard of Care. But they could not argue with the results. It is an Art and a Science.
I am now dealing with another “speed bump” for what I consider the 4th time. At 56 yrs old in 2019 had Lyme disease when 1st diagnosed, required double mastectomy, about to do chemo & radiation with port in when dermatologist thought my Lyme was 2nd stage & did a skin biopsy that revealed breast cancers had spread. Docs pivoted to Verzenio & Arimidex. Out comes port. 18 mos. later cancer came back with a vengeance while hiking the AT & getting ready for my daughter’s wedding up by Glacier Nat’l Park - ascites. Didn’t quite finish reconstruction as expander had to come out for scans. Last drain of 12 lbs ended with chemo same day. Taxol & Avastin micro-dosing (weekly) for 22x and 30x, and Fulvestrant monthly injections (still). Dec/Jan/Feb 2024 - brain tumor that initially presented inside as an inner ear problem. Clean removal followed by brain radiation, and a ski trip! Everyone thought Breast but Pathology revealed Mullerian. Fulvestrant still keeping Breast Cancer tumor markers acceptable bit rising CA125 and Signatera blood markers made for a joint decision to handle with current chemo after a great summer/fall of being extra healthy and happy. Just did my 11th micro dose of Taxol, Carboplatin, Avastin (every 2 weeks) and Fulvestrant injections (monthly). Docs want me to try and do 6 mos & about 24-26. To better handle cumulative side effects, will go to a 3 week on, one week off starting after 12 - to coincide with a family ski trip we planned long ago. More tired, slowly down, just got a cold but handling this round.
I shared probably more details than relevant for many but perhaps a word or phase will be relevant. I cannot emphasis enough that you all have joined a “Team” that no one wants to be on. BUT what amazing people and what a great community out there. Mayo Connect is so helpful. It constantly reminds us that everybody is different. “Every body”. With that recognition, it is so helpful to know that others are traveling the same path and there is so much hope, tricks of the trade, questions answered and provoking insight that can lead to additional questions and research with your medical team.
So with humor, I was just going to share my most recent tricks for this 2nd round of chemo. Since I go weekly, I am all over my schedulers for the appointments and rooms I want. I know my blood orders. Lidocaine cream helps with port access (my third) & we discussed placement. I come with printed reports of lab work going back years to track trends when I meet with my doctors. Yes I brought everyone holiday cookies, Valentines - you get more flies with honey then vinegar. But don’t keep me waiting for 30-60 min beyond my app’t time. I put on my walking shoes and hit the parking lot - they page me or come find me. Fresh air does me good and since I still work, easier to take call. I bought off Amazon cold packs for hair, hands and feet. Go in a cooler with freezer packs and food I like. I take biotin for hair, skin and nails. I still have lots of hair and it is no longer falling out. I did not use cold packs last time. Happy to wear hats and I have a wig that I can’t yet use (scalp is irritated) - I was told that neuropathy could be an issue this time around. So use the packs. None yet but other aches. Btw- I know people who swear by acupuncture for treating that. I am finding that dry shampoo is awesome for the hair I still have - it plumps it up and helps cover some of the balding spots and irritations. I am a dirty blonde ( yes with grey!) - there is a brunette that turns down that baby fine blonde. Nasal gel, eye drops, lip balm and soothing throat lozenges at before bedtime helps with drying out. Lots of liquids- water with electrolytes, teas, a gourmet coffee once in a while, smoothies with bananas, Greek yogurt, pb & choc - yum!! And SOUP. Friends ask what they can do….walk dogs and make my husband & I soup. Make enough for them and just a tad more to give! Exercise and fresh air. YES! Small amounts add up. Anything. My hubby and I started yoga at the beginning of all this - just went again last night 6 yrs later. Water aerobics in a heated water helps with my stiff body. Cold water plunges - damn when the water is 40. Pilates on a reformer, weight trainer, dog walking, biking (!) on my electric bike as allowed me to keep up with my CO bike racer kids up mountains and taken me through Ireland and France. My golf still sucks. Tennis - doubles helps with cardio. Books and cooking new meals are goals this time. So I guess I just say “yes” to anyone and anything. If this journey has been thrust on me, I guess I am doing my best to make lemonade out of lemons. I am hoping to be a good healthier patient for my docs, and to make our relationship easier. I hope to be controlling what I can, and accepting the rest in the best possible way. And so back to that “Every Body” is different. Meds, pre-existing conditions, support, lifestyle, family, work, location, etc. all will have an impact. This site is one way of helping yourself through our shared craziness. Importantly Cancer is starting to be written with a small “c” - people are living good lives with it in their background - a chronic condition - as advances are made every day and knowledge is passed on. Good luck!! We have this!!