Anyone doing BRCA chemo AC, with an autoimmune condition?

Just completing Day 5 of my first round, and we’re in a shocking heatwave. Sips of water are burning as they go down (but, hey, that’s almost nothing new just not so constant). I’m living like a limp rag, which I half-expected, but in 4-hr blocks; and the internal pain is pretty bad (again, half-expected but not so constant). 

I’m wondering: how did you cope over summer?

is it mainly the first week that’s so bad, each time?

There’s not much that I can find in the forums or eviQ info for people like us, whose immune systems are over-protective anyway so we’re really knocked around. 

Please note: so far, I’m not sick, there’s nothing unusual as a reaction (except I want to cry, I’m so tired and sore), and I’m not scared. And I’m truly lucky to only be undergoing this as a preventative measure; they got all the cancer before it spread.

I've never heard of chemo as a preventive.

What is the chemo attacking?

Anyway, best of luck. Sounds rough.

Thanks, DB. 
My oncologist explained that as we found the little growths as a matter of routine scanning, it’s wise to ‘blast the body with [chemo drugs] to stop any other cells on the verge of changing’, then we’re targeting the excision site with radiotherapy. That’ll take care of family history and general good luck. 
Thank goodness I only have 3 more sessions to go through! I’m in awe of people who do more. 

nothing useful here, just  big surprise big surprise and hoping it eases up soon, and/or you find ways

Can I just say small amounts of mashed root veg are possibly the greatest dietary invention?  wink

Joanne, could you explain about  the mashed root vegetable?

With pleasure! I haven’t been able to eat or drink much beyond smallest mouthfuls and have lost about 10 lbs in just under a week. It’d be wonderful if I weren’t worried about dehydration, kidney and liver damage cheesecheese

My other half is overwhelmed with all this, and his studies and work-related stuff. So mashed potato, mashed gold sweet potato, mashed cauliflower, scrambled egg, chicken broth, lentil soup have all had their starring turns this week. A small bowl of mashed potatoes with a sweet-bowl of soup is delicious, and most of my day’s rations. (I’ve usually stopped hurting enough to swallow this amount by 6pm)

Remember those colonoscopy prep threads we had a few years back? Remember how badly some people reacted to both the prep and the procedure? For me, every day this week has been that x7, but on the inside. (And no, we can’t find a ‘safe’ colonoscopy prep for me)

STOP PRESS: I just managed most of a weak decaf coffee with rice milk so I could take my morning meds! Woohoo!! That’s more than yesterday. (Made some rice tea while I was at it, for sipping later)

Figures. Spoke with one of the Oncology Nurses, who said ‘oh no! This is definitely not what anyone would have expected for you! I’ll tell Emergency to expect you soon’.

I’m currently in a Nemo room, with deep blue curtains, and a beeping ‘sonar’  oh oh 

"Like" - i.e., to the extent that i like your laugh emoji and Nemo ref, plus that you're probably in the right place.  All best. : )

So I’m back in Emergency with a pesky & fleeting fever. 
Turns out the inflammation is probably a mucosositis, and a similar swelling of theGI tract that up to 40% of people on chemo get. 
apparently my neutrofils are waaaaay too low. 

I’ve been back home home now for a few days, putting weight back on and mostly living a quiet normal life. 
I had zero neutrophils -no immunity to anything - which also pretty much explained my exhaustion. While they’d expected me to have a rough time for a week or so, my oncology team hadn’t expected it to be as bad as it was - and apparently my reaction has nothing to do with my autoimmune condition, it was all the chemo doing what it’s meant to. 
So on Friday I’ll have better prep (to boost bone marrow), stronger anti-nausea meds for a few days, and I think I’m getting an antibiotic as well as the chemo mix. Talk about a cocktail! smile

The really big news is that my hair’s gone. It started coming out a week ago, in clumps, apparently right on time according to the doc in hospital. I wasn’t expecting it yet, and was a bit scared to touch my head, brush my hair, wash it... My hair was thick and long, well below my shoulders. Naturally curly, dark, with a long purple stripe just behind the left ear. By Sunday, 8 huge handsful would fall out any time I touched it, so I collected the hair and on Monday morning we shaved it and donated it all to a kids’ wig bank, and an environmental charity. 
I’ve got scarves, hats etc. Don’t think I’ll bother with a wig. It feels a bit weird in the wind, in the shower or rain. My nieces say I look like a rockstar aunty, my nephew says I look my Mum; my sister says she remembers when my grew the first time cheese My neighbour got a cochlear implant so we’re comparing bald patches! smile Shemademedothis just accepts the new look and loves me, and quietly put away my hairbrush and scrunchies. 

going with rock star.  unable to find hug emoticon.

You’re very kind! It’s early-morning me, bleary-eyed and with no makeup  smile wink

Joanne, I am so sorry to hear about your illness — from what you write, I am sure your positive attitude will play a big role in your return to good health.

Thank you, and please thank Harry for the purrs and head-butts cheese

Honey, you look beautiful and Badass . Nothing better mess with you   Sending 
you light and love and hopefully a few distractions

Time for a (sleepy) celebration: as you might know, we had a national holiday on Tuesday, so I couldn’t get my bloodwork done in the usual time for chemo at 9 am today. I was told Monday would be fine - then yesterday, chemo was moved to lunchtime. This morning, they told I needed new bloodwork first (wait 2 hours for processing)...that turned into 3... I got got home well after 5.30pm. 
There was the usual hassle trying to find a workable vein; and the lovely nurses really didn’t believe it was my final final session. I think 6 of them each checked my files to be sure  oh oh  (well, most people have more than 4) We’ve all agreed: if for any reason I need chemo/immunotherapy, I’ll get a PIC-line next time. 
oh! The clown wig is a great ice-breaker with bald blokes over 40!  wink

You can hardly see the sparkly water bottle I’m holding: You are magical like a Unicorn.

My pic now goes on the tree behind me, as a graduate of the Day Unit. 

Just a quick update: 

I rang the bell quite loudly this morning, signifying the end of 16 radiation sessions (3 weeks + 1 day). It’s been an intense month cheese Made some lovely friends and will seeing them each morning; hope they continue to do well. The docs are very happy. 

I have a couple of weeks off (Passover cleaning & prep, eh? Lol), then onto the hormone blockers I believe.  Now, no matter what you might see or hear on the news re Queensland floods, we are OK. My part of the Gold Coast is quick-draining and is unlikely to flood badly. 

Congrats on progress, dear joanne! and thanks for flood info (I had been wondering, when it came on the news, and i have almost zero sense of Australian geography.

A fun fact the tour guides love to quote around here is that we have more canals than Venice (Italy); and a lot of our land is reclaimed from mangroves and flood plains. So given enough rain it’s easy for the rivers and creeks to overflow, and for low-lying roads to flood for a short while. But it’s usually not more than a couple of feet and drains in a few hours. The bigger problem is the water’s swift-flowing and you don’t know what else is in there. 
Our lake came close to breaking its banks but still drained into the wetlands reserve behind our complex, so the natural waterways are still functioning properly. (A couple of years ago, industrial vandals dumped cement and chemicals in the reserve’s creeks & drains)
The rain is forecast is stop tomorrow morning (Wednesday); it’s been so heavy and so constant since the weekend I could scream. 

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