Starting Chemo May 2019
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Hi everyone! I feel a little overwhelmed because I'm behind on our board.
Sounds like everyone is doing relatively well.
My scars are very long under my breasts, following the curvature. I am using silicone tape to hopefully minimalize them. Of course, I'll be back to square one after reconstruction next year. My scar tissue does feel thick. Both of my surgeons are pleased with my progress. I never had any bruising.
My chest doesn't feel tight. I do think I have cording in my right arm. It feels fine most of the time. It hurts (from under my arm all the way down to my wrist) when I raise it straight up and bend my wrist back. Not a natural position, but I stretch daily. I need to insist on at least a couple of PT sessions.
I was supposed to start Xeloda on Saturday, but waited until yesterday. I'm fine so far.
Consider me concussed from the kitchen sink being thrown at me. I'm having it all. Still positive most of the time. Had a brief pity party the other day. Staying focused on my family helps. I'm back to my normal routine. Hopefully Xeloda won't set me back.
I'm adding a photo to show hair growth. My lashes and brows are close to pre chemo. I'm a little sleep deprived. It's obvious that I've gained weight. Trying to get over that.
Anyway, I'm so happy to have you all.
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Happyanyway so great to hear from you. You look fabulous. So much hair and eyelashes. Weight Schmate you look stunning!! Natalie’s cording is similar. Our center said be religious on stretching at lest 2 times per day. We are finding a local PT as well. Pity parties are allowed!!! Holy Hannah this a battle and the great news we all are winning!!! Thank you for getting back with us. Keep up the good work and keep us posted!! You rock!
Jay
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You look beautiful HA!!!!!
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Happy, you look wonderful! My hair is about 2 weeks behind yours, you have more length on top than I do but the rest looks the same, even the color. And I'm battling the weight gain as well, not easy with all these holidays. I believe when I get to feeling I'm up for gym workouts it'll come off. I like the gym, but I don't want to push myself too much while I'm healing. Good luck on the Xeloda.
I had my f/u with my BS, she says everything looks great and I'll see her in May. Got my path report, nice to see it in writing. While no active cancer cells were found they did find some dead cells that must have been the result of the chemo, also a nice little abscess was forming from the previous lumpectomies, so glad all that is out of me. She also said for f/u scans it will be and MRI every 2 years. Got home, took a nap and now I'm heading to the PS, I believe I can start the silicone gel stuff now, so I will pick that up while I'm there.
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Happy, you look wonderful! Your lashes, OMG!!! I keep my fingers crossed the Xeloda will not be harsh on you. It is good to at least try. You can always stop if it does not work well for you. You never know until you try.
I am way to embarrassed about the status of my hair to post a picture yet. I need at least 2-3 more weeks.
April, glad you had a good appointment with the BS. What is the "silicone gel stuff"?
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mightly, just the scar silicone sheets. Had that appointment as well and have my strips on now. Supposed to help them heal less visibly. We shall see...
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April, I am also doing the silicone sheets. I keloid scar, so the silicone is a must. I’m hoping for good results. Happy, you look beautiful! Your lashes and brows are so full! And your hair is fantastic! I don’t have nearly that much, even though we finished chemo at the same time. I hope the Xeloda works well for you. Jay, sorry to hear of Natalie’s cording. I can’t recommend PT enough!! I went 4 times and I am SO MUCH BETTER! I can finally raise my arms above my head with no issue.
Sorry I’ve been MIA lately and missed so much. I’ve been prepping for today— my parents left to return home after 6 months of looking after me. I’m so lost! They did everything. I am so spoiled now.
I go to my MO on Thursday and I’ll probably get my prescription for Tamoxifen then. It should be an interesting meeting since I refused radiation.
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Hi!
I am very curious on how your hair has been growing back so quickly!! I finished chemo on 9/5/19 and everything is goring back minus my eyebrows.... I got the ok to start biotin vitamins and have been using biotin shampoo all throughout chemo and post chemo. You look FANTASTIC!!
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Thanks for the kind words and love everyone. Right back to you all.
April0315, I hadn't thought of asking my PS about scar sheets. I'll ask the nurse about it tomorrow when I have my TE filled. I'm excited for you and everyone else on here that had a pCR.
Mightlybird01, I bought silicone tape on Amazon. It's not marketed as scar treatment, but several reviewers use it as such. I'll look at my account and let you know what kind it is.
ExcorciseCancer, I never lost all my hair. I'm guessing I lost 50-60%. It started growing back when I was on TC. My sister gifted Latisse to me back in October for my birthday. I used it on my lashes and brows for a few weeks until my BMX. I haven't used it since. Maybe I'll start back up tonight.
My husband is talking to me about spark plugs and billiards. Random, I know. Out for now.
Have a wonderful evening everyone.
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HA, for some lovely reason my insurance is covering the silicone scar sheets so I got their expensive brand, Siligen. He did say "scar away" was a good drug store priced option. I also used latisse once I stopped chemo on my brows and lashes. They are back to normal, so I'm using it now on just my lashes a few times a week.
I've been stretching more these last 2 days and it's making a world of difference. The PA at the PS office spent about 10 minutes with me showing me how to do them. So I did them yesterday and this morning.
Radiation consult this afternoon. I'm still planning on getting a second opinion if she says I need it. I've done my research and I do not meet criteria. BS said she wouldn't lose any sleep over it if I did opt to refuse and MO already said I shouldn't need it, so I'm feeling pretty confident. Although I'll feel even better if the RO agrees.
Palmetto.. how sweet that you had your parents there all this time. I bet you miss them terribly. Best of luck adjusting to their absence!
Jay, how is Nat feeling?
EC.. I have been on multivitamins the whole time and my hair also started coming back during the Taxol. We all heal differently but I hope you start getting some solid head coverage soon!
Have a great Wed everyone!
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Got the official, No rads needed! Woo Hoo! What a relief.
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APRIL. APRIL. APRIL!!! That is my chant for you. As Natalie says “fantabulous “. Wonderful news.
Thank you for asking about Natalie. She is feeling fabulous except for the cording in her left arm and neuropathy in her toes. We see a special PT here in Flagstaff tomorrow who is the guru of cording. So Natalie says no biggie she’ll take care of this like her cancer!! That’s my girl. My fingers are getting strong from all the foot massaging. I’m thinking the neuropathy is a ploy😳😜.
Palmetto, so great to hear from you! Your parents sound like amazing people. Your PT notes on cording was very encouraging. We are anxious to get started.Happyanyway spark plugs and billiards...freaking hilarious!! Always uplifting to hear from you.
Praying daily for everyone here!!
Blessings
J
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Congratulations April! Great news!! Palmetto, I hope you had a good first days without your parents, settling back into your life. Parents are just the best. Good luck with the MO today. Jrominger. let us know how the cording PT session went. How many nodes did Nat have removed? Good for you for your foot massages :-)! You guys are a great team :-).
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Thanks. I'm pretty happy. She was actually on the fence about what to do and asked me what I wanted to do, she said some people feel very strongly about doing everything and she never knows what the patient is feeling. So, I opted out and she was fine with that, unless something shows up on the MRI in the future.
I tried on so many bras at the mastectomy store I was sore last night! Looking forward to a nice day of doing nothing.Got 4 covered under insurance.
Jay and Nat good luck with the PT appointment for the cording. I'm sure it will help a lot.
I am going to supervise my hubby putting up Christmas lights today.
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Hi, PT went really well. The PT is a 9 yr BC survivor and 30 yr lymphedema PT! So we were in good hands. She said Natalie has cording because she is a skinny little thing
. She said it will definitely go away with time and effort. She said not to stretch it too much but keep at it and we will see her twice a week for 6 wks. She is sure it will be gone by then. Very comforting.Mightlybird, Natalie had 2 nodes removed. The sentinel node(sp) and one that was kind of attached. No cancer ever in either one of them. The PT felt that it would be unlikely that Natalie would get lymphedema due to her body type and fitness level???
April, I like the supervision!! Make him work while you give constructive criticism
Love this holiday and what it means!!Jay
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April-Congrats on not needing rads. That is just great! So happy for you. 🎉👍How do your Christmas lights look??
Palmetto- How did MO appt go? Are you starting Tamoxifen? I am doing well on anastrozole.
Jrom- Glad to hear Nat's PT appt. went well. Hoping the neuropathy and cording will soon be history.
Hi as well to happyanyway & Mightlybird01, thinking of everyone and glad to hear about everyone's progress to date.
Pat💞
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April- yay for no rads! That’s great you don’t have to be a rebel now.
And I need to know your insurance that covers bras and silicone gel... sheesh! That’s very fortunate!!Jay- Sounds like Nat hit the jackpot with PT. I pray she’s sees recovery from the cording quickly.
Happy- how’s Xeloda so far?
Mightly, Pat- thanks for asking about me. I’m settling in ok without my parents. The worst of it so far is having to cook meals again. I ordered a meal service, so hopefully that will help me with menus and prep work.
I had my MO visit today. Told her I wasn’t doing rads. She seemed fine with it. She also told me she wasn’t recommending Xeloda like she thought she might. So now, she wants me to think about Tamoxifen OR anastrozole and a shot to put me in menopause... yay. I guess I have more research and soul searching to do
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The lights look ok, not our best front yard display but they are up and we look festive. I have a crafty friend coming over Tues and she's going to help me with my inside decorations. I don't do much, but it's all in the garage in boxes and I need help. I don't want to put up a lot but a few small things that will be easy to put away. This was a cute Idea, i got a lot of flowers sent to me and she was saying i can use the vases as winter scenes, use Epsom salt to look like snow and put miniature trees etc in there to look like winter scenes (trees, cabins etc...) hers look really cute, we shall see how mine come out.
My insurance is really good, it's my husbands policy and he's in the pilot union for Southwest Airlines, so they negotiated well. I have been pleased and relieved this diagnosis hasn't broken the bank.
HappyAnyway, would love an update on the Xeloda
Palmetto.. how are you with out your parents??? I have been on femara since mid October. Chemo pushed me thru menopause. Good luck with your next research project. I love that we all really dig up information and are making educated and informed decisions about our health and plan of care.
Wondering how long everyone took off from work after these surgeries. I'm due to return Jan 13 (so I took 8 weeks). 6 would have popped me back right around Christmas and I decided I'd rather go a few more weeks without pay and enjoy the season (i already used all my sick time on previous surgery and the AC chemo)
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Jrominger, 6 weeks twice weekly sounds like a doable time. I am sure the PT will have all sorts of benefits apart from the cording. It is good to establish that relationship in any case. I also had two nodes removed but back in April, at the diagnostic stage before chemo and mastectomy. And I was also told I am not the body type for lymphedema. So I don't worry about it.
Palmetto, enjoy your time cooking. I have found a lot of pleasure in baking bread throughout my treatments and I have come to the point that I bake all my breads myself. I love to experiment with different flours and seeds. I also just started making my own Kefir from raw milk that I buy directly from the farm. This is a lot of fun too. The kefir grains are like a new pet. You have to keep feeding them milk and keep them at the right temperature or they die.
It is 4 weeks post UMX for me today and I would say I am pretty much back to normal, apart from the missing hair still. We went downtown Chicago for the Christkindl Market yesterday and I just still feel as such an outlier with so short hair. But hubby is so supportive and says I look wonderful and fashionable. It helps that he has even less hair than me now :-)!
I think today I will venture out and clean out my mares hooves for the first time. This will give a test to the strength of my right arm. Have not lifted hooves up in 4 weeks and that is a LONG time for me. Yesterday I already gave a thorough clean to the barn for the first time. And it all went well. I guess I start cleaning the barn before I clean the house, hubby still doing all the vacuuming :-)!Palmetto, good luck with the research on those two drugs. Let us know what you find.
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April0315, great news, no radiation! Have fun with your friend decorating. Little bit decorated our tree. I love it!
Jrominger, it sounds like Natalie has a great PT. Please keep us updated on her progress.
Hi UpstateNYer. How are you?
Palmetto, we're learning so much. The decisions we have to make are tough. Prayers to you.
Mightlybird01, sounds like you're getting back to your old routine. Feels great, doesn't it? Do you have a gluten free bread recipe that you are willing to share?
I haven't experienced any SE from Xeloda. Hopefully I can stay on it with little to no SE.
I'm at the salon with little bit. She's having a wash, cut and style. The stylist asked if she goes to school. She said "not today". 😁 She's having a couple of friends over for a sleepover tonight. We're taking them to see Frozen 2. Should be a fun day.
Have a great weekend everyone.
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Hi Happyanyway,
I am doing fine, except that I am fighting a cold that I received earlier this week. I am lucky, however, as it is the first time I've been "sick" since my Feb. diagnosis.
Sounds like you're having a fun weekend planned with your daughter's sleepover and movie.
Happy that you are doing well so far on Xeloda. Sure hope it continues.
Mightlybird01- how did it go with the mares' hooves cleaning? Hope you didn't overdo it. Nice that your hubby is still vacuuming the house. Perhaps he will continue to do so. 😜
Hope everyone is doing well.
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HappyAnyway, no unfortunately, I have no experience with gluten free bread. I have at least 6 different flours but none of them gluten free. But I searched a little online, and it sees you can buy gluten free bread flour. I think if I would try to make gluten free bread for the first time, I would buy this flour and I would follow this recipe:
https://breadtopia.com/artisan-style-gluten-free-b...
I like breads with crusts, so I bake them in a pot with a lid on.
The key for my breads is to set them up the night before, let the yeasts multiply and then bake the next morning. Especially for the more heavy whole wheat bread with actual cracked whole grains in it this is what works best for me.
UpstateNY, yes, cleaning out hooves went fine, however, I had to divert my attention to a wound my mare has incurred that night on her leg. Leg was quite swollen, but thankfully no lameness.
Yesterday, I did the manure shuffling for the first time. It was no problem at all. However, by the evening I felt again a little more sore. But I don't think I had to do with the manure shuffling. We had a lot of things going on yesterday, including getting really cold on a christmas market and dinner guests for the evening and me cleaning the bathrooms prior to that. I think I just did too much in one day. It was minor soreness and something I can absolutely tolerate, it was just noticeable that it was worse than the previous days. I am sure I lost a lot of muscle strength in my right arm. I can actually see it by just looking at my arms. One looses muscles so quickly when not in use. So my body just has to built up those lifting muscles again, and some of it will be associated with some soreness I believe.
Hope everyone is having a nice Sunday.
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Good morning all-
I have been reading up on everyone and it puts a smile on my face to hear how well everyone is doing. You have all always given me the reassurance that we are all in this together.
I have my overfill for my expanders next week and then fitted for my radiation mold next Tuesday. Hoping to start my 28 rads the week of Christmas. During rads I will be taking Xeloda so any insight you have Happy I would love to know! Should be done with both in time to go see my mom in Mesa, AZ for our annual girls birthday trip in February.
Love to you all!
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G1973, nice to hear from you. Best wishes on your upcoming treatments. From what I read here it seems as if you should do really well with rads and Xeloda! February in Mesa is the place to be!! Beautiful time of year to be there. We are 2.5 hrs north in the snow
So we love coming down to the valley of the sun in February and March. We actually did our treatments in the Phoenix area.Natalie is doing really well, 9 weeks PFC and 5 weeks post DMX. Hair and eyelashes are coming along. Some dark hair is now coming in amongst the white. Love the white, so different. Neuropathy in toes is about the same. Cording in left armpit is improving with PT. Attitude is over the top excellent!
Thinking and praying for all you amazing women on this site every day. Hang tough and God Bless you all.
Jay
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Love to see the recovery process happening for all of you!
Be gentle on yourselves -- I had nothing particular to recover from (other than treatment itself) and it took me a solid 10 months to cross over into feeling normal the majority of the time. Rest amply! Practice sleep hygiene (Regular bedtime, melatonin, black room, cold room.) Also do your best to eat 99% nutrient-dense foods. Your body has gone through a lot and needs to refuel itself.
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Hello everyone! I'm so glad to hear everyone's progress, seems like we are all on a good path.
I'm still a little tight in my R arm, but stretching a few times a day and that helps. The femara is giving me some joint pain, so i'm adding some flax seed oil to my diet today. I think it's the femara, could be just getting older. Either way the oil should help eventually.
My girls are both home from college and we have been busy shopping, decorating etc...
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hi everyone, Just checking in as well. Good to hear that everyone is doing well.
April- I eat flax seed meal every day. It is the ground up flax seed. I am doing It to lower cholesterol, but also have not been experiencing any joint pain from taking anastrozole. Hope the flax oil helps with your joint pain. Nice that you have your daughters home for Christmas.
Jrom-Glad to hear that Nat's attitude remains so positive. Hopefully the cording and neuropathy will improve soon. You are always in my prayers along with everyone on this forum.
Hope everyone will have a very happy holiday season. Pat💞
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Hello friends, so glad to hear from all of you! And mostly positive news! We still need to hear from HappyAnyway, how it goes on the Xeloda and how Palmetto is settling in without her parents.
I have not much news to report. I had my bra and breast form fitting and taken measurements for my custom breast form. But even with the temporary one, that I have right now I feel great. I finally have a fitting bra, after 30 years of trying to find one, or pretty much having given up for the last 20 years :-)!. Matching my natural left breast I was fitted with 36A, though she has ordered a 36AA just to try. Turns out that for all these years, I would have had to look at mastectomy bras to fit my body type, as there is a full line of band width and cup sizes, unlike regular stores, where something like a 36 A just does not exist. Wearing my breast form, I really hardly notice any difference between that one and my real breast. I can jump and run and everything stays put. Even if I am half sided flat, I am totally fine, but I prefer to wear my bra and breast form when I work out. It just gives my upper body some stability and balance. I am back to doing all chores in the stable and have absolutely no pain. Even shoulder pain is gone at the moment. Range of motion is 100%, though my right side feels a bit tighter than my left when stretching all the way up. Hardly surprising. There is just less skin to stretch. But overall, for just 5.5 weeks post surgery, I am amazed how well everything is and I am very happy for my decision to choose the route to quickest possible recovery with least potential for complication.
Jrominger, has Nat had her breast form fitting yet? If yes, how did it go??
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Hi everyone. Mightlybird, UpstateNYer April. Nice to hear from you all. April I sure hope the joint pain dissipates soon. We eat a lot of flaxseed for a lot of different reasons. Lot’s of good things come from flaxseed. You all will be happy to hear that flaxseed is good for your prostates as well, lol. Natalie and our daughter have an appointment for her bra fitting with prosthetics next week. Prescription for 3 sets. They gave her tempo“ knitted Knockers at the center. They gave her the smallest ones they had. She laughed her butt off as she looked like Dolly Parton. She pulled out most of the stuffing and still was large. Too funny. Cording is slowly but surely getting better. Range of motion is a 100%! Just hurts some.
UpstateNYer great to hear from you and thank you for your prayers!! Mightlybird you keep up the good work. It all sounds so positive!!Prayers for everyone!!
J
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I forgot: santabarbarian, thanks for reminding us on eating the 99% clean foods :-)! I try to adhere to it as best as I can. There are those ginger breads in my house currently, but only 1 a day....
I eat flax seed too and so do all my horses for the past 10 years. I grind them myself each morning in a coffee grinder. Their coats look amazing. Everyone comments on it.
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