AUGUST 2015 SURGERY SISTERS!!

Anonymous

Saw my oncologist yesterday and received my oncotype testing results. My # was a 6! He said he has never seen a # so low in any of his patients, usually between 10 and 20, so it was a good appt. He gave me a rx for tamoxifen, which I started taking today. The tablets are 20 mg. I also was fitted for bras and prosthetics yesterday afternoon. I went with a C and a D, just for fun. I told my husband I have magic boobs now, just like Lt. Dan in Forest Gump

https://youtu.be/mKFKRuWwgjg

SummerAngel

Sherrie, that's wonderful news! I'm so happy for you!

Ringelle

Sherri - congrats on the on the score! That must be a little relief through everything. Any advice on getting fitted? I'm going this morning! Excited but nervous. Curious with box and low score - did they say why they are still having you do tamoxifen?

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39andhip

Sherrie - Good news on the oncotype! I will also be starting tamoxifen someday soon, too - 'when you're ready' my MO told me.

Ringelle - My MO told me that the oncotype DX assumes you will take tamoxifen for at least 5 years. If you don't, the results mean nothing. It's a bummer, as I'd love to avoid messing with my hormones, but alas...

Ringelle

ah okay. That makes sense. Since I had "just" DCIS and a BMX no oncotype was done. I'm sure the IDC is the game changer. It was suggested that I have a discussion with mo about tamoxifen but she and bs said no. After watching a lady at work start it I'm super grateful.

Suzy1067

Hi all - I received my Tamoxifen last week and I'm still just looking at it...UGH - I just don't want to take it and I know I'm being a whiner since I really have not had to do much else (like chemo or radiation). I'm supposed to go back to the oncologist on 10/30 to see how it's going, so, I suppose I should take it before then, LOL.

Thanks for letting me whine - love having this group to talk to!

XOXO

Suzy

Molly50

A Breast Cancer Cure?Did you see the article about the future of BC treatment? This article mentions oncotype Dx DCIS in the future.

Molly50

Whine away, Suzy. We all have those days.

Molly50

I have my RX of anastrozole sitting here waiting for my second opinion on chemo or no chemo and the RO doesn't want me to take it until after rads even though MO told me that I could start right away. I am not anxious to start anyway.

Artista928

The infection I have in my right "breast" area ps says is looking like it'll clear ok before Thurs when I have my port sx. I'm looking at it and it looks almost the same as last week. I can tell it's redder than the left side, which actually isn't. My bs who's putting the port in is defering to ps on ok for sx or not. So I didn't cancel it. BS ordered a cbc which I did on Mon so I suppose he'll look at this and maybe decide if he's going to can me on the day of if he sees what he saw on Fri which to me is the same thing.

I've changed my MO. I was going to Berkeley for MO who is in network with my insurance and she was to write orders to the hosp here who is also in network. The infusion center at Washington Hospital here in Fremont CA is VERY nice. Feels like you are in a room in a house with a recliner, tv, nice decor, and a view of a water fountain outside. Plus you can order for free whatever you want off the hospital menu. Very cool! This was the plan until I found out MO in Berk has no privileges to the hosp here so no can do. So I decided to go with the MO located in the building as the women's center who has rave reviews. I was going to go with her to start with but her group doesn't take my insurance. So I was looking for free since I've met my in network deductible and out of pocket match. I went to her office yesterday and the cost of the visits aren't as bad as I thought so I prefer quality, comfort and location more than free if I stayed with MO in Berk 25 miles away and went to the infusion center there which is a hospital bed and room, nothing like a home environment that you get here plus the hosp food/drink menu! I was very impressed on my private tour last week and the staff is great!

39andhip

Suzy - I hear you. I am in the same boat - no chemo or rads, but I still want to whine about messing with my hormones. I got my prescription for my tamoxifen yesterday and haven't filled it yet. My MO wants me to take it for a month and then have some labs done and go back and see him. I made the follow-up appointments for November 13th and 20th, so I need to start taking the tamoxifen by mid-October. Ugh!!

SummerAngel

I'm a week and a half into my second try with Tamoxifen. Doing a half dose for 8 weeks, with another eye exam and pelvic exam at about 6 weeks. So far so good, the SEs aren't bad at all right now. There are many women with zero SEs so it's definitely worth a try, and the reduction in recurrence rates is huge.

Suzy1067

Artista - I am so sorry for all the trouble you are having to deal with...makes me feel terrible for complaining .  I am in awe of all that everyone deals with and this is truly a community we all need - it's so nice to connect with you all and to be there for each other...lift each other up and I pray for you all!

Thank you for sharing and thank you for your responses...39andhip, that reminds me, I had elevated liver enzymes at the first visit and they took more blood, last time, to compare.  I had forgotten about that - I guess I could call about those results.  He did say to go ahead and take it, so, I think I'm going to be a big girl and take it tonight.  May as well see what happens.

Quiltlibrarian hoping your first day back was a great one!  Great news on the low Oncotype sgabbert!! 

39andhip

SummerAngel - Out of curiosity, why did you stop taking tamoxifen the first time?

SummerAngel

Taking it at the standard dosage (20mg/day) caused me severe SEs. Most (leg cramps, headaches, increased joint pain, terrible mood swings) I could live with, but two continued to get worse over time and eventually caused me to stop. The most distressing one was eye problems. I developed pain in the backs of my eyes and increasing blurry vision. The day I was driving my daughter somewhere and was having so much trouble seeing that I was tempted to pull over is the day I quit. My vision cleared up by about three weeks after quitting. My eye doc said it was Tamoxifen toxicity. I also developed pain and pressure in my pelvis. The pressure stopped within a week or so of quitting, but the pain continued. The Tamoxifen had caused two ovarian cysts. My gyn will be checking in a few weeks to see if they have cleared up.

I've done a bunch of research and these types of eye problems are rare. Ovarian cysts in premenopausal women are very common, but a lot of women don't have any associated pain. Not sure why I do!

Artista928

Suzy, don't feel bad about complaining. Every aspect of this sucks. I always think things can be worse and thank God that everything is working out ok so far since for some, it doesn't so much. I'm scared to take tamox too. I already have sleep apnea, dermatitis and bad knees and don't care for anymore side effects.

quiltlibrarian

Hello all, first day was good. I have a great bunch of people where I work. So careful that I don't do to much. I was sore after work and tired, but happy to be back.

Hugs all

Artista928

Well I went to surg's office and like I thought, not looking better than when he saw me last Fri so port sx off for tomorrow. Have a fu to see him next Fri to see if all clear before I reschedule. I see Kilaru ps tomorrow about getting stronger abx. I"m thinking since I called him after he saw me and he was with another pt, he just said ok without really remembering me. So glad I did go get a final check otherwise I would be tying up people for nothing, as well as myself.

Anonymous

Ringelle how did your fitting go? I will be going end of next week or early the following week for a second fitting as after being home with the bra that I was sent home with it was just too big - riding up and bunching up on the sides so since they were having to order the other 2 bras for me they are ordering the sizes that they didn't have and I will try those on instead.

Sorry for such a late reply, I don't really get on her but every couple of days - busy Mama and nursing student here.

Taking the tamoxifen is still prophylactic I think. I have to say that for now it beats the alternative. Three days in and honestly I have to say I have slept better the last couple of nights than I have in some time, it may also be that I moved my tower fan to blow more directly on me too, but nonetheless, I'm sleeping well right now.

Suzy1067

So, I took the Tamoxifen - 3 days in for me also sgabbert - I tried twice at night and woke up a lot and felt hot a couple times, but, not terribly. I think the sleeplessness was mainly due to my last fill and being uncomfortable (1st dose of Tamoxifen was same day as last fill).  And my DH said he was really hot too...so, I think our room was warm - not me!  Today, I took it in the morning, thought I'd see how it felt during the day.  Doctor said to try it at different times to see what seemed best.  The TEs are getting restless, haha...I told my DH that every week they feel different (pain/sensation).  But, they are consistently hard - I just sneezed and felt like my right one might burst .

I love reading about the fittings and looking forward to that day...thank you all for sharing this journey!

XOXO

Anonymous

I take the tamox in the morning when I take my thyroid med, calcium +D and multi-vitamin. I live in S. Texas so it's warm and really humid right now but you being in Florida probably have the same weather as we do. I turn my a/c down to 72/71 at night and I have a tower fan on high, ceiling fan on high at night. I recently moved the fan closer to me on my side of the bed so that it would blow more directly on my face but up from my feet and that has helped tremendously with sleeping at night. We are also in the market for a new bed and are looking at the sleep number beds so maybe that will help a little more even being able to adjust it to what I feel like that night.

The breast forms are an interesting wear. They aren't very heavy but do have some weight to them. They are hot though. I take them off when at home. I hung the bra with forms in it the other night on the back of the bathroom door and my husband has begged me to not do that anymore because he swung the door and it came around and hit him in the balls!! I had to laugh and told him I would move by boobs for him

AudreyB

sgabbert, you win post of the day. LOL.

Molly50

sgabbert that's the best story yet!

Artista928

Well infection didn't clear after 10 days of amox so was admitted to hosp on 9/24 Thurs at 5 pm to receive IV abx. Took forever to find a viable vein- I mean forever. From 9 pm they started trying. One would blow then an hour later someone else would try and boom. Finally at 12:20 AM got it at the base of my thumb. Then 3 am got roomie who was a talker. Man. And she was anxious about her hip fx from falling off her bike and was out of control. Took till 4:30 am to get her settled. So up all night. Then from Fri night to so far Sun night no roomie. Hope it holds.

Got picc line yesterday. This thing stubborn so 11 days left of IV abx. Can't stay here whole time so either home with it and home nurse or skilled nursing facility. Friend's been taking care of my guinea pig am and pm but she's gone Fri pm until Sun pm and I have 0 to help me with her- and you can't just let it go with gps. Needs her food/veggies/hay and water check each day. So stressing about what happens if I can't go home.

So who knows if TEs can be saved or not. Day by day. Anyway, that's up with me.. Hope all is well with you guys!

Molly50

Artista, I am so sorry about the infection and I pray you will be able to go home with home nursing so your guinea pig will have care.

Anonymous

Artista I will keep in my prayers that things go the way you need them to so that you can be at home. If not do you have any elementary teacher friends that might be able to take on guinea as a class project for the time being?

Stay positive!

39andhip

Arista - That sounds awful! I'm so sorry. I hope you're able to go home soon.

Suzy1067

YES, sgabbert - hilarious!! I'm continuing with the Tamox in the AM, so far, so good .

Artista - girl, I am so sorry . Sending extra prayers and hugs your way. I hope you're home soon and taking care of yourself and your little buddy.

XOXO,

Suzy

hummingbirdlover

Hi August sisters,

Sgabbert, I laughed out loud at your post. I've been on tamoxifen for almost a year now and honestly, the only SE I have is hot flashes at night and I mean boiling over, sweating through whatever I'm wearing hot flashes. I can live with them. Covers off, covers on..DH deals with it but if it keeps my reoccurrence risk down, it's my friend.

I wish you all the very best. I had my one year cancerversary last week and it was depressing and oh so happy at the same time.

I guess I'm "done" other than tats...I feel so emotional at times.

Take care ladies

Artista928

Thanks all. After 5 days in the hospital on IV abx, I came home last night. Home nursing came out and set up IV and showed me how to administer abx myself twice a day. One week for now until doc sees how it looks when I see him on Mon. Fun times!