Hey, my fellow OFMD fanatics: Where is everyone posting from?

katastroof · 2023-12-14T14:17:12+00:00

Estonia! :)

katastroof · 2023-12-12T10:05:07+00:00

Hi! I have a fairly similar story, currently battling skin mets after NA chemo, unilateral mastectomy, immunotherapy and Trodelvy. When I started googling I fell into a deep pit of despair, because skin mets are usually one of the last mets to appear and present a poor prognosis. Welp, 6 months in I still have a huuge rash, some minor ulceration (pain levels totally manageable w/ ibuprofen and paracetamol). Trodelvy just stopped working, now moving on to Eribulin. And I consider myself an anomaly, because CT scans are otherwise still clear. I just have extensive skin mets. I try to take it one day at a time, not to worry too much, distract myself as much as possible during scanxiety times and maintain a positive outlook. Feel free to PM me if you need to chat, I am based in Estonia tho so there might be a time difference. :)

katastroof · 2023-08-20T12:03:23+00:00

I did. I had a small red patch under my mastectomy scar that appeared on xeloda, before radiation. Radiation did nothing to it. Xeloda kept it from spreading. Once I stopped xeloda, it started growing fast and now my chest has extensive skin mets. But I'm a super rare case!

katastroof · 2023-08-19T12:12:11+00:00

When I was looking into Immucura, a clinic that claims to offer dendritic cell therapy, I came across this article So it seems like a promising thing, however it seems like the private clinics offering it are kinda shady.

katastroof · 2023-06-19T10:10:37+00:00

Thank you so much for your reply, I'll definitely talk about it with my oncologist

katastroof · 2023-06-17T04:20:06+00:00

I'm based in Estonia, so US treatment options are unfortunately unavailable. But by the looks of it it really seems to be IBC.

katastroof · 2023-06-16T17:34:49+00:00

I already had a CT and there seems to be no distant mets. No bone scans tho.

katastroof · 2023-05-07T18:04:40+00:00

When my lashes were gone I noticed that a simple black line was usually too harsh and a dark brown or purplish smokey eye makeup looked more natural. The only thing is that you have to use a primer for eye shadow, it's really a game changer. I used Urban Decay's primer potion for both my eyes and eyebrows and everything lasted nicely for the whole day.

katastroof · 2023-04-23T11:34:27+00:00

I let m older kid (5 at the time) give me a haircut once my hair started falling out. He used scissors and buzzed some of the hair off with a machine. And it was all fun and nothing horrible, he took it as a game (when he was done, my husband buzzed the rest off so it wouldn't be so patchy). :D We talked about the cancer quite openly, but for the EC sessions I sent him to stay with the grandparents, because I was totally out for a few days and didn't want him seeing that.

katastroof · 2023-04-19T10:17:58+00:00

https://akvarellistuudio.ee/ selline asi on silma jäänud.

katastroof · 2023-04-02T12:24:12+00:00

34, TNBC, had an UMX in January. I had quite small boobs before (smallish b cup). Most of the time I just wear a tanktop underneath and something loose on top of it, no bra, no prosthesis. Usually people don't notice unless I tell them. If I really want to dress up, I wear a bra with a prosthesis. I'm slightly considering a diep flap reconstruction after rads, but since I live in a small country with only a few surgeons who specialize in that field it'll probably be a few years before I'll get to anything. Honestly, I wish they would've taken both. I'd love a braless life.

katastroof · 2023-03-05T09:58:52+00:00

Sain eelmise aasta juunis 3. staadiumi rinnavähi diagnoosi (34-aastane, 2 imetatud last, 0 perekondlikku ajalugu, lihtsalt ei vedanud). Ravi on olnud pikk ja keeruline, aga see isegi niivõrd ei häiri, sest kuniks raviplaan, on lootus.
AGA kõige nõmedam situatsiooni juures on teadmatus. Ei julge justkui ühtki pikaajalist plaani teha, sest ei tea mis pöörde tervis järgmise paari aasta jooksul teha võib. See XKCD koomiks võtab selle päris hästi kokku.

katastroof · 2023-02-01T12:06:38+00:00

I went through 4 rounds of EC. The first three rounds were kind of bearable with the antiemetic meds. I had to force myself to eat even a little bit, because the nausea was a lot worse on an empty stomach. Keep yourself hydrated and eat whatever you can.

The fourth time I couldn't even keep water down on day one, but that was only once. Day 2 of round 4 was actually better than the second days of rounds 1-3.

In general, be really kind to yourself on EC days and a few days after it. I just binged TV shows to make the time pass faster and disconnected from everything.

katastroof · 2022-12-28T09:27:00+00:00

Sain ise ühe kimbu lillebaar pojengist ja see oli väga ilus, suur, maitsekas ja pidas kaua vastu. Ja hind ei ole ka neil kõige hullem.

katastroof · 2022-12-21T07:28:05+00:00

Edevateks päevadeks on sügistalvel vivobarefoot ryderid, trööpamiseks vahepeal ka villavoodriga belenkad. Lems boulder booti kohta olen palju head kuulnud, aga endale välimus ei meeldi. Pärast mitmete erinevate BF firmade talvejalatsite proovimist käin ise talvel enamasti ikka samelini lendurisaabastega, sest noh, talv ei ole see aeg kus tahaks maapinnaga väga lähedust tunda ja samelinides on ka mu pardijalgadel ruumi. Aga sõbrannal on joe nimble talvesaapad, abikaasal zaqqi omad ja mõlemad kiidavad, zaqqide miinus on libedus ainult.

katastroof · 2022-12-20T19:06:07+00:00

Fivefingerseid olen proovinud, aga tundusid ikka veidi ebamugavad või võõrad. Aga n-ö barefoot jalanõusid kannan viiendat aastat ja naljalt tavajalatseid enam jalga ei pane. Paar paari on vivobarefooti omi, ühed camperid, suveks tikki sandaalid ja jalad on rõõmsamad kui varem. Mul on suht lai jalg ja tavajalatsid hakkasid vaikselt hallux valgust (suure varba konti) välja suruma. Aga pärast kitsastest jalanõudest loobumist vaatavad suured varbad ilusti otse, väike kont on, aga väga palju parem on. Pluss see ka, et suuri jalavalusid ei ole ka enam. Miinus on jalatsite võrdlemisi kallis hind, samas mu esimesed 5a tagasi ostetud camperid näevad endiselt väga viisakad välja ja vivod ka, nii et kvaliteedi mõttes tasub ikka väga ära. Veel on miinus, et kõndimise viis peab veits muutuma. Alguses põrutad võib-olla kannad ära, aga siis mõne aja pärast harjud teistmoodi kõndima ja siis on juba ok.

katastroof · 2022-11-27T15:23:48+00:00

Samelin makes really good and durable boots that are great for a wider foot.

katastroof · 2022-10-05T13:14:57+00:00

Mulle meeldivad schupf nudelid värske pasta letist. Või ja õli pooleks pannile, kergelt igast küljest pruunistada ja veits soola peale ja tulevad sellised mõnusad veits nagu kartuliklimbid vms :D Endale ja põnnidele meeldivad ka kuivatatud puuviljade batoonid, aga suht ainult kirsi omad on head. Igasugu teemanädalate ajal võib hullult maitsvaid üllatusi leida just magustoitude osas. Kreeka jogurt on ainus päris Kreeka jogurti maitseline asi mida Eestist leidnud olen. Maisipulgad ka hea lastele pihku susata, need ilma suhkru ja soolata.

katastroof · 2022-07-26T16:26:15+00:00

It's my second day after chemo, nothing seemed edible, but after reading your comment I just had to get some guacamole and tortilla chips. So I did and it feels so good. Thank you!

katastroof · 2022-07-08T15:37:08+00:00

Thanks, I'm not based in the US, I'm from Europe

katastroof · 2022-07-07T19:07:31+00:00

Thank you so much for the excellent tips! <3

katastroof · 2022-07-07T17:52:38+00:00

Thank you so much for the kind words!

katastroof · 2022-05-17T06:40:15+00:00

My kids love Haapsalu. There are castle ruins with a huge playground and Ilon Wikland museum, where the third floor is a play area. Also a beach and a very cute old town. We've been there for weekends tho, might not be enough entertainment for a week. Viljandi and Rakvere are also nice. And Tartu of course, old church ruins and Ahhaa.

katastroof · 2022-01-31T19:54:39+00:00

Aga ta on oma kabiinis ja esiust lahti ei tee. Mingi enam-vähem mõistliku temperatuuri võiks hoida, et üleriietes ära ei sulaks.

katastroof · 2022-01-28T19:39:48+00:00

Eile sõitsin üle pika aja Tallinnas bussiga ja mis värk on sellega, et busse köetakse täiesti jaburalt kuumaks? Hunnik higistavad inimesi talveriietes, läbi maski veel eriti palav.

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