Chemo starting November 2018
Comments
-
Well, when a haircut is in your future, please let us know! It is going to take some months for me. Hugs xxxxx
0 -
Fruit of the Loom front close bra (I've attached a picture), they have sizes up to 48 from what I saw on the link I saw (but there might be more sizes looking elsewhere). They are comfortable with out being restrictive. I've been wearing my "normal size" and one size up. Cheap enough to get several of both sizes.
The radiation has made me swell some and when recovering from the exchange procedure the larger size was more comfortable also due to swelling.
So far the Lubriderm hasn't made such a mess for me. It's thin enough to soak in pretty well and thick enough to provide some relief from the pinky pinky pink.
I am looking forward to having this shaggy pixie cut shaped up some so it looks"on purpose".
0 -
I just saw this, Maddie, guess i turned my notifications off, I'm sorry. Thank you so much! I've ordered one. And I will pick up some Lubriderm, I start Monday and they did not tell me to buy anything, which makes me not feel so great about them. I totally can relate to getting a hair cut, mine is thick in places, but so thin on my forehead I still wear a hat. Best wishes to you, and thank you so much for sharing. I will click the turn notifications on!! Have a beautiful weekend, Lisa
0 -
Lisa I had to get some Aquaphor to use on my skin along with a bar of Dove soap. RO doesn't want me using even my shea butter 8( when do you start Rads?
Maddie the bra looks comfy by I'm having the trouble everything sliding up into my mastectomy incisions so I guess I'm to stay with those ugly compression vest bras for a while. I did buy 2 of the "new" tube tops but they slide down never really could wear them as a teen either as they would slide down and try to let the girls out lol
Have a great weekend everyone. I'm going to a cancer survivor event tomorrow at my local hospital. Supposed to be a lot of vendors there and door prizes and freebies too. It's going to be a scorcher but I'm prepared hat..check...unbrella... check....sunblock... check... big brimmed hat... check and my huge purse for water bottle!
0 -
Thank you, Nanette, that is good to know. I'm glad you are going to the event, and I sure hope you have a good time. It is good to meet other people who are going through or have gone through this. Hope you win a door prize! Sounds like you are prepared! I bought some aloe vera yesterday and go for the first time today. Hopefully, they will give me some tips. Wishing you the best with the rest of your radiation and please keep in touch, thank you. Everyone have a good week! Love and hugs, Lisa
0 -
Lisa, good luck with rads! It will go by quicker than you think.
Nanette, hope you have fun at the event! I am going to one at my rads center on Friday. I am not sure how I feel about it. I have been in a kinda gloomy limbo since I finished rads. Crazy! I wish I could snap my fingers and be out of it.
Maddie, I bought a couple of these after surgery. They are pretty good. I ended up not wearing anything through rads, but I think these would have been comfortable enough to have worn.
I have another HP tomorrow. Seeing the MO before this time. Hoping that good things come from it all.
Hope you all have a good week!
0 -
Frmthaheart...PLEASE go to event. My lady neighbor and I took a young 73 yr old neighbor man (who has rectal cancer and has been very depressed lately). I asked him after we'd been there a bit if he was having fun and he smiled and said yes. He was glad we came and got him. Sometimes we just need to get out of our element to see the hope in the survivors we meet there.
I learned a lot about the events that are offered to cancer patients and survivors...like free yoga....art therapy classes...bc monthly group.
They gave us all a free lunch ticket and had a good vendor there that was amazing. He offered natural food lunches and salads. I had a frozen thing with frozen acai berries, granola, fresh acai berries, blue berries, banana slices and I asked to substitute strawberries for shredded coconut all these were nicely mixed with granola but NOT in an overwhelming way. I had no idea really what it was but instantly enjoyed it in the 99°f heat. There were lots of vendors and lots of freebies too.
It was honestly the most fun I've had in a L-o-n-g time. I painted a rock... art therapy... I rode a giant hamster wheel that shaved my ice into my cup for an Italian ice.... I had my arm painted instead of my face... she did 3 small butterflies on a white background going up my for arm... we did silly pictures on this weird camera that looked like an old drs scale... there was music, pop talks (speches) from survivors and 1 of the Drs at my cancer ctr... it was just great and in already planning to go next year!!
As for everyone else most hospitals that treat cancer do something for National Cancer Survivors Day so look on line....look at Facebook or just type in the name National Cancer ..... In your search bar a d add your zipcode.
Hugs to ALL of you... together you've all helped me survive this far and I know I'm going to live a LONG LONG time because you give me HOPE!!
0 -
You girls, I love you girls. Frmthahart, HP - Herceptin Perjeta? I have my infusion Thursday. We are doing some of the same things.
Nanette - I think our hospital offered a luncheon last week for National Cancer Survivors Day, I just didn't make it over there because I was at work. I'm glad you went and had a good time, the food sounds really good!
I am in a local group on Facebook for women in our area and we have a new member, Dee, who more than likely was the Dee who was waiting after my radiation yesterday (the nurse said, we're ready for you Dee). She put a post that she has 46 radiation treatments left, out of 60, and was asking what type of lotion to use. I thought to myself, I have only 33 treatments to complete, and how grateful I should be.
Our radiation department is nice and everything, but I asked yesterday what kind of lotion they recommended, and the answer was, most people use whatever lotion they have on hand. I guess they don't want to tell you. I've read on here of the many lotions and have a general idea, but I figured they'd offer something. Oh well, everyone is different, and, Nanette, you're right, this group has offered me so much hope! Hazel-Nut, you'll have to let us know how things are going with you, by the way.
As we approach getting all of this done, surgery, chemo, radiation, we are entering a new life. I've read some articles about this part of our journey, but coming to this place, I'm not sure how much anxiety there will be, wondering if, when, all those things. I know I have a medicine thing on the counter now, which I will have always, those wonderful hormone pills that wake me up at night when I feel extremely hot. It's funny, my husband will tell me, I'm hot too, or my bones ache too, I am so lucky he has been here. I wonder about folks that are alone, or don't have everyone praying for them. Sorry if I sound like a nut. I wonder sometimes if I have a glass of wine, if I will cause a recurrence. I think Dee is a reminder of what I need to remember and find thankfulness. My kids are grown, and I know some women have small children. And then, this morning, they ran something on the news about a camp they're having this summer for children with cancer. That might be the worse thing ever.
Sorry if I ramble. We have to have that hope and, Nanette is right, you can find it here. Hugs to everyone, and I hope you are having a good week. I hope you are able to attend that, Frmthahart, and come back to tell us about it. Lisa
0 -
Good Morning everyone!
I hope all of your who are in radiation are having an easy time of it and that your skin is holding up.
Sorry to be away for so long, I've been enjoying some time away while recovering from surgery.
Today is my first day back to work after medical leave. I had a very eventful 6 weeks off. Right now I'm living with what feels like the seroma that will never end. I'm so freaking sick of my abdominal binder. I was at the PS office yesterday and the PA drained 360cc out of my abdomen. That's 12 ounces! And she didn't even get it all. I have multiple areas on my abdomen and breast incisions that have opened up and are being little buggers about healing. My body is rejecting the sutures and staple clips and they are quite painfully pushing their way out and creating wounds as they go. I wound up in the hospital last week because of cellulitis and needed to be admitted for IV antibiotics. I'm doing well now but it sure does give me an appreciation for how good it feels to feel good.
My oncologist is going to have me start 6 cycles of Xeloda because of the residual disease at time of surgery. Part of me is glad to be doing something to treat the cancer but the other part is so upset at the idea of having to go back to medication side effects. I'm 2 1/2 months PFC and there have been a couple of days where I have felt so good I can almost think of a time when I'll be able to put all of this behind me. By the time I'm done with the Xeloda I will have been fighting this cancer for more than a year. She told me to schedule an appointment with the radiation oncologist to determine if there are any radiation recommendations and I've been avoiding doing that... dear God I do not want radiation.
In happier news - and Lisa you'll enjoy this - I have found a Maine Coon kitten that I have reserved and will be able to pick up on the 18th. This is my finish line prize. I always wanted a Maine Coon kitten but my husband was adamant that we not have anymore cats. When I was diagnosed I told my husband that if I was going to go through all of this then I demanded a prize at the end and this is it. He is all black and has poly toes (an extra tow on his front feet) and I plan to call him Hagrid. It feels a little bit like cheating to bring him home before I'm actually done with chemo but I reserved him before I knew about the Xeloda.
0 -
First let me say how totally excited I am you are getting a Maine Coon kitty cat! Oh, how fun for you, yippee!! Please share a photo sometime. I like that name, Hagrid, hm, is that a Harry Potter person maybe? Oh, I'm so happy for you!
My seroma finally went away, so keep the faith that little turkey will go away too - those things are a pain in the butt! Xeloda, I looked it up and you won't lose your hair, so it ain't too bad, and maybe it will help get rid of that residual stuff, and you can be done with the drugs. Taking Herceptin and Perjeta, right Frmthahart, is kind of like having a treatment, so maybe we can relate a little bit. I'll share something I've not shared with anyone, I've had diarrhea since November! Thank you, Perjeta. I'm glad you're back to work. I will post the photo I took of the radiation room today (so my husband knows where I go every day). The radiation is a green light laser, so my husband tells me and it goes one way around you, and then back again. The ladies are pretty nice and I'm taking Frmthahart's word it will go fast, and my surgeon said it will be a piece of cake! Love you girls, keep in touch please. Oh, a new kitty, yay! I am 2 down and 31 to go!
0 -
Thanks bunches for that picture! I showed DH as we have no clue what my machine will look like. Guess we'll find out in a day or two but the pic makes less scary
0 -
Halfway thru radiation for me. Skin holding up ok - I feel cross between a dehydrated orange peel and an overly ripe tomato. I am very red but no blistering. I had simulation for the cone down or "boost" today along w my regular session. New little positioning tattoo to join the other 3 or 4 from the first simulation session. Medication change for me - no more exemestane (Aromasin) for this girl. Changing to tamoxifen due to some joint related side effects that just kept getting worse. I was mostly thru month 2 of Aromasin..... Had the Zoladex injection this morning too. Was a day full of Drs appts. I can't wait to put this behind me.
Looking forward to planning a week long vacation for Sept or October. We haven't quite decided yet where. But we're doing something!
My best to all you ladies..... More later! MB1
0 -
Thank you for checking in, Maddie, and I am very grateful your skin is still holding up, yay for you! I am hopeful to get through halfway - the door to the radiation room was malfunctioning yesterday and they sent us home after about an hour of waiting. Hoping the part comes in today, scheduled for 5:30 (they normally do not go that late, but have to make up for yesterday). I keep reading about boosts, and I'm not sure if that is part of my treatment plan or not. I'm sorry you are having joint problems. I am taking anastrazole (Arimidex) and occasionally have that, along with waking up at night and being hot. Hopefully, the tamoxifen will do better for you.
I sat and visited with the lady who gets radiation after me yesterday, while waiting on the door, she has been married for 56 years and has lung cancer. She is taking chemo and radiation at the same time and has had a lot of problems with nausea and throwing up. I asked her if she had nausea pills and she said she did, but she hasn't taken them. I encouraged her to take them before she feels sick to try and ward it off. We talked about how much fun it is going through this (how it is not fun) and having doctor appointments all the time. I hope you have a beautiful destination in the fall, and are totally done with everything by then, and can relax and enjoy that time. Hugs to everyone this week, it is quite lovely here in Missouri today, highs in the 70s, before we get back to the usual steamy summer days later this week. Since I get to go at 5:30 today, hubby is going with me and we might stop for dinner somewhere. Take care, Lisa
0 -
Good morning friends!
I should be starting xeloda this week, just waiting for the specialty pharmacy to deliver it. My oncologist has officially gone and I've been handed off to another. I meet with the new oncologist after my first cycle of xeloda.
I had a PS appointment this morning and it looks like I'm over the worst of the seroma. The PA said I can start scar massage. Honestly, touching the scars kinda creeps me out. I wonder if I can make my husband do it lol.
Here's a laugh for you - this morning I put on a button front blouse that I haven't worn since last summer (and had forgotten the reason I didn't wear it was because the buttons gape terribly). I left my office to go to the conference room and was halfway across the lobby and realized the buttons had come undone all the way to my waist! I don't really have any sensation in my chest anymore and I guess I didn't feel the buttons go or the breeze on my foobs lol. I think I'm going to have to run over to Target and buy a new blouse to get me through the day. Several of my coworkers got quite an eyeful.
It's going to be hot and humid here today and I'm glad I don't have a lot of errands to run. Hope those of you in the middle of radiation are holding up ok and are able to get lots of rest. Happy Monday
0 -
Hi Hazel-Nut!
It is nice to hear from you. Glad you are getting started on the xeloda and hope it doesn't cause much side effects. Glad your seroma is gone too, those are a pain in the neck. Get you a pretty new top at Target, they have some pretty things. That made me smile, I can only remember putting my top on inside out a few times! Hoping everyone has a great week, I completed radiation #10 this morning (out of 33). Hugs, Lisa
0 -
How is everyone? I went to bed at 7:30 last night, so tired from radiation. 20 treatments to go. Had some chest pain yesterday at work, went and checked my blood pressure, which was okay. Got home and looked on this web site, guess chest pain comes along with radiation. Made it hard to sleep, but so far so good today. Had dreams about HER2 breast cancer, just my mind thinking about radiation, and taking HP until November, and then whatever drug he thinks I might need after that, and wondering if all these things they are having me do are going to work, would I have been better off to have everything removed, etc. etc. I am the crazy lady, I guess, minus the cat today. Thought about my mother on the drive to work, she was 54 when she died of cancer, and I will be 56 this year, she had colon cancer though. I must say, times have changed, thankful for that. Rambling, sorry, I guess I'd like to say I am not positive and strong all the time. I have people at work tell me that, and I know it is not true. I like to cry when I'm all by myself sometimes. Just hoping maybe you can understand. Hope you all have a wonderful weekend, and you are feeling well, and thinking good thoughts! Hugs, Lisa
0 -
Lisa I totally get it and i hope you feel better dumping out some of the trash. Sorry again about your Mom... I don't think we ever get over that loss. You're ok even on the not so strong I need to have some cry days. I don't cry over this...well maybe in the wee hours of the night when I'm sleep deprived.
0 -
Lisa I’m at about the same point as you though I finished 33 radiation treatments and I’m still on herceptin/perjeta through October. Everyone expects me to be fine now but I’m still tired. I’ll be starting an AI soon and I’m worried about the SE. I’m not so positive these days. Husband was so supportive during the last 9 months but after surgery feels I’m on my own for the rest of it. But it’s not over, I’m feeling alone now
0 -
I finished radiation yesterday. Got a diploma, had some skin care discharge instructions from the nurses and a follow up appt w the rad onc. While I know I'll be seeing someone every month for my Zoladex shot (ovarian suppression) and every 6 months for Zometa infusion (bone support), and I'm taking tamoxifen now daily - I feel a little lost. Like that balloon that floats away..... Work is like "yeah! It's over, that beast is gone! So, about that report that you were supposed to get done in March, when can we expect that???". My PT therapist is fantastic. She's suggested (and so has the nurse navigator at the med onc) that I start seeing a therapist to work thru processing everything. She said most folks going thru what we've been thru have a little feeling of abandonment around this time - finishing up "active" treatment and starting "passive" (not the right word, maybe maintenance is better) treatment. Now is the time we're all supposed to start "living" again, not just "surviving".
Honestly, everything in my life feels really weird right now. There are times I cry at night too. Driving something will come on the radio, cry, see stupid commercials about Cancer Treatment Center of America, cry, husband puts the forks the wrong way in the dishwasher, cry, pup licks my burnt neck bc she likes the taste of the lotion, cry.......
0 -
Thank you, girls, for understanding. Hugs to you, Maddie, I am almost there, by the middle of July for radiation and November for Herceptin/Perjeta. It really helps me to talk to you girls, thank you.
I get so tired too, last Saturday I fell asleep at 5:30 and got in bed at 7:30 and didn't get up til 6 the next morning. It probably helps us to have a good long sleep now and then.
This lady that has radiation after me, she is 73, been married 50 some years, she has lung cancer. She is on oxygen, in a wheelchair, can't eat and talking to me about losing your hair. She is the sweetest woman. When i get down in the dumps, feeling sorry for myself, I remember how grateful I am to be able to walk in the clinic to get radiation.
Our son in Oregon sees a therapist, Maddie, and it has helped me a great deal. I think therapy is underrated. You are all in my thoughts, sending you my best wishes today. Hugs, Lisa
0 -
Maddie - Congrats on getting through radiation!
Lisa - I think if I stand still long enough these days I will dissolve into tears. It feels like it's always right under the surface and at any second I can go from just fine to blubbering mess instantly.
I'm a few days into Xeloda and in true chemo fashion (for me at least!) the side effects started right away. I took my first dose last Thursday and I cried so hard standing there in my kitchen with those pills in my hand thinking about everything I was getting ready to put myself through again. This is not as bad as the bad days on AC, which seems to be the official bench mark for the way doctor's describe side effects these days. It's either as bad as AC or not as bad. My appetite is gone, the soles of my feet are tomato red and sore, my old friend constipation is back, joints hurt, and just as the chemo brain was starting to go away it has come right back again!
I got really pissy with my husband when he pointed out that Xeloda wouldn't be as bad as AC because I think that's a pretty jackassy platitude (and one he stole from the onc but I can't very well get mad at her!) because while no, it isn't as bad as AC, it's a hell of a lot worse than when I got to live a life of no chemo or cancer or paralyzing fear of recurrence so telling me it's better than AC doesn't really make me feel better. And also, he's never been on AC so how the hell does he know what is or isn't better? So yeah...I'm on the emotional struggle bus these days too.
A couple weeks ago I started calling around to see if I could find a therapist but so far no luck, everyone I've called is all booked up. I know that I am not at all dealing with this whole cancer thing in a safe or constructive way and that I need to get my self together so I don't keep losing my crap in front of my husband. He'd let me and never say a word about it but it isn't fair.
In happier news - my little kitten is an absolute dream. He's so funny to watch and play with. Its been years since I've had a kitten, our older cat we adopted as an adult, I'd forgotten how busy and curious they are. Also, the feeling of a tiny sleeping kitty in your arms? Almost better than holding a newborn baby.
0 -
I had #17 radiation today. I cannot even begin to imagine having chemotherapy again, my biggest hugs to you, Hazel Nut. Walking back into a nightmare, only you have some idea of what it is this time. Please keep looking for a therapist. And I think it matters that you get a good one, if you get one and it doesn't "click", look for another one.
I work in a big office where you pass by a lot of people in the hallway. Some folks say hello, some folks don't. One certain guy, I don't know his name, usually says hello and then one day a couple of weeks ago he stopped and told me, my wife went through what you are going through. We both knew the hell we were talking about. And then he told me, it is hard on the caretaker too. I think we all know this, but I stopped in my tracks and just loved my husband x3 in that moment. Aren't we lucky - I love what you said, "he'd let me and never say a word about it." I gotta tell you, my husband has been cleaning litter boxes for my 9 cats (God, I don't think I ever told any of you that, yes, and don't think I went out and actually got 9 cats, just so you know!!), since November. It ain't easy. Dealing with this awful disease ain't easy, but then I'm not telling you anything you don't know already.
And that kitten, dear Hazel, please share a photo. You'll have to share one of that old timer too, kiss her nose. Pets love us so, and bring us so much joy, yes, even all 9 of mine, and the 2 that have shown up in my backyard. Love you ladies, hugs to you Hazel. "This too shall pass" and repeat. Remember what someone told me after diagnosis, I keep it handy to read over again: I will never be grateful for cancer. But I am thankful for the lessons I have learned. For those just beginning your journey hold on. Reach out. Be tough. Be weak when needed. And know it gets better.
0 -
Just wanted to say Happy Fourth to you lovely ladies. I hope you are with those you love and have some good food! Nice weather would be great too, if you are with family and swimming pools. We deserve some good food!! Love and hugs to you, Lisa
0 -
How is everyone doing? I will finally finish radiation Friday. Took the afternoon off and plan a nice lunch with my co-cancer supporter (my husband), and more than likely a nap. Still will have HP infusions every 3 weeks through November, but thus starts "the rest of my life" I suppose. How are you dealing with "the rest of your life"? Isn't that a song, what are you doing the rest of your life? I asked my husband last night, should I have my port taken out this year (save money on that lovely out of pocket for 2020), he had no answer. Something tells me, deep down, I will need it again, and I am in no hurry really. I hope everyone is doing well and feeling well and moving on without any problems. Hugs, Lisa
0 -
Hi everyone!
I've been making a point of staying away from all of my cancer groups. I'm hoping that giving myself a little distance will help me work on healing. I have to stop picking at the emotional scabs so to speak. If anyone wants to keep up with me outside of the boards feel free to message me and we can connect on Facebook. Lisa friended me and now I get to see lots of kitty pics!
Xeloda is treating me ok so far. Cycle 1 kicked my butt so the MO lowered my dose and cycle 2 has been much nicer to me. My biggest complaint is that I've had a non stop headache for 4 weeks. Tylenol and motrin take care of it but the minute they wear off the headache comes right back.
I was at the PS last week for my 3 month follow up and so far so good. The seroma seems to be gone for good. Now that the swelling is gone down and things seem to be settling into their normal positions I have definitely got some lopsided breasts. The PS said he won't make any changes until I'm at least a year out which I'm actually fine with. I need to get this Xeloda in the rear-view mirror before moving on to anything else.
There's an area (a lump I suppose but I hate using that word now) that the PA said was fat necrosis at my last visit and told me to massage. I've been massaging it and it's just getting bigger so I brought it up to the PS and he said it's not acting like fat necrosis and he sent me to the BS office for an ultrasound. I met with the BS this am and she did an ultrasound in her office and couldn't come up with any definitive conclusion so now I have to go for a real, official ultrasound at the imaging clinic on Friday and a possible biopsy.
So here I am again, getting sampled like a box of chocolates. Everything that is probably nothing will now and forever get treated like it is something until I'm poked and prodded into insanity to prove definitively that it is nothing. Remember back in the good old days when you could walk into a doctors office for routine exams and leave with a clean bill of health and not have the bejeesus scared out of you? ahhhh.... those were the days.
0 -
Just saw the MO today to review my last cycle of Xeloda and now she wants me to have a brain MRI because of the headaches. I talked her into a compromise by agreeing that if the headaches are still there at my next visit in 4 weeks then we'd do the MRI. I don't think there's a xanax dosage high enough to convince me to sign myself up for the anxiety that comes from waiting for scan results. I know they say God never gives us more than we can handle but I don't think he realized that I'm such a big ass wimp.
0 -
Our new world. Scanxiety. Hugs, Hazel-Nut. Keeping you in my prayers. Hoping those headaches disappear.
0 -
hello ladies,
Any one knows about Goldilocks mastectomy. First, I was proposed doing lumpectomy because my surgeon said she see no difference in the outcome in regards to mastectomy. Then ps proposed doing Goldilocks mastectomy given that my breast are ddd where this procedure can replace mastectomy and reconstruction in one shot. It sounds good but I did not hear before about this and I am wondering if any of you had that. Thanks
0 -
I have not heard of that, Margun. You might try searching Goldilocks on here, maybe you can find a post about it. Sorry. Best of luck to you, Lisa
0 -
Margun, I found this for you
0
