Chemo starting April 2018
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Batata, Sorry your going thru this and I can relate to pain that its causing. Keep pushing the doctors if u know something is not right. Also a nurse navigator might have recommendation of doctors for axillary webbing that can address Mondors disease. Link to thread:
https://community.breastcancer.org/forum/148/topics/860252?page=1#post_5265830
For PT i found someone that specialize in lymphedmea and axillary webbing. She is also a sister of TNBC. I found PT to be a huge relief of pain as they gradually stretch the area so ur more comfortable to move and regain mobility. Ive got webbing, which effect from wrist of my right arm all the down ribs around to breast and than around to shoulder blade. PT help enormously and I went twice a week right after surgery.
Sending cyber hugs..
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Day 6 post-exchange surgery... I'm doing well! I've been really tired and feeling lazy these past few days but today I think I've turned the corner into more energy. I don't have any pain, just some tenderness with certain movements. Can I just say that I hate having to sleep on my back again? Anyhow, I have my first post-op check with the PS this afternoon and can not wait. He'll remove the gauze and I'll get to see what's under there for the first time. Fingers crossed!
Frog, glad to see you on here. Congrats on the job! Bryce is doing well, thanks. So sorry about your losing the house. Like Ingerp said, the right house will come along and everything will fall into place. Enjoy that belly dance class - I always thought learning it would be fun. I'm like you - about one day apart from your diagnosis date (mine was 3/22/18) so this month is just yucky in general. Hang in there with the Xeloda - you are almost done! How is your dad?
Duffy, we're all holding our breath for you. Prayers that everything is fine. Good luck getting your report today, hopefully it'll be available.
DebAL, your kitty is adorable. I miss my furbabies...
Batata, good luck and try not to freak out (I know, it's very hard not to). From what I read, Modor's is NOT in the arm, just in the breast or chest. You might "only" have cording. It doesn't increase your risk of more BC and if it's in the armpit, Modor's Disease actually IS axillary cording. I hope this link helps: https://www.breastcancercare.org.uk/information-support/have-i-got-breast-cancer/breast-pain-other-benign-conditions/mondor%E2%80%99s-disease. Keep us posted - sending big hugs!0 -
Thanks so much for your message Urdrago. I'm in Egypt right now and the level of medical care here is quite limited. I'm having a hard time just finding a doctor to give me a proper diagnosis, but based on what I've read, (and the links you provided) it's probably Mondor's. Maybe it's webbing, because it's also a kind of cording?
It's been a week now with no improvement, it's actually getting worse (the cord is more defined and longer and the pain is worse). But I'm hoping to find a new oncologist, and after the PET Scan on Sunday will try to also see a Dr specialized in vascular issues (veins mainly) because I want to make sure that even though it hurts it's not dangerous.
I'm trying to find exercises and stretches to do online, in addition to the ones I've been doing since the surgery. Thanks to your advice I will try to find a PT.
Again, thanks so much for the support. Cyber hugs back atcha.
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Batata, I thought maybe some YouTube videos could help you find exercises to relieve the cording/axillary web syndrome, if that's what it is. I hope these help:
This shows/describes cording:
https://www.youtube.com/watch?v=DhseruhnMUc
This one is an assessment that you can do on your own to see if it actually is cording:
https://www.youtube.com/watch?v=qjiVGZK1kSc
Here are some that show exercises to help it:
https://www.youtube.com/watch?v=QoP9zQ05Qp0&list=PLaqrOcReTkAQ0LsBMVPkmJoUptNLOFZgV
https://www.youtube.com/watch?v=swxwkUM5v5M
Good luck!
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Batata - Sorry to hear you are enduring so much pain and no supportive medical care. Fingers crossed that changes.
I actually got news on my drive to Cancer center for Herceptin. Nothing like barreling down I-69 doing 80mph and having your MOs office call. Fortunately or unfortunately depending on how you look at it. My implant has ruptured (probably a result of the radiation). Luckily, my office moved quickly and also during my drive I got scheduled in with my PS for not only a consult March 12th but also implant exchange surgery March 29th. I'm relieved it isn't a tumor but not looking forward to another surgery. The good news is it is a pretty easy fix and it won't affect my treatment schedule. I'll still end targeted therapy April 17th. Hip hip Hooray !
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Duffy, thats a wow but bummer to have another surgery.. sending well wishes..
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Duffy--sorry about that but could have been worse, right? And hooray for keeping that April 17th date!!
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Thanks a million GA Warrior, I've tried all the exercises. Not sure about the diagnosis yet. Seeing another oncologist on Monday i hope.
Duffy, so sorry that you have to go through surgery again, major bummer.
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Duffyzmom, sending you best wishes for the surgery. Glad it will get taken care of and you can continue towards finishing on 17th April.
Batata, I hope you find some relief from the pain and also get some answers.
Urdrago, how are you holding up on Xeloda? Do remember to drink lots of water and have protein with your breakfast and dinner, something about Xeloda SEs not being that harsh if they have protein cells to bind to in the stomach. I will try to look up that link and send it to you. I feel quite dry inside and out. Also my lips blister and crack on Xeloda, not a good look, its not painful or anything. Have turned quite dark, again, this happenned on Taxol as well. I have some skin toxicity but its at level 1. My doc keeps reminding me that I am still on chemo and to have realistic expectations from my body. I have been quite tired for the last few days. Staring at the laptop for 3-4 hours everyday is making eyes drier. It helps that I chose my own hours. I cannot help but think how you, Robin, DebAl, Janice and all the ladies that kept working through appointments, SEs last year through this journey. You guys are such great inspiration.
Robin, good to know you are doung fine after the surgery. My dad is fine. His doc told him not to worry and that its quite common to have some malignancy in the prostate at his age. He is back to being himself mostly. Has agreed to let go of some of the crazy stuff like lugging heavy things or getting on ladders.
Anyone tried mindfullness before. I tried it on and off last year. It seems to help some of the anxiety and general well being
Keep well everyone.
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Duffy, sorry for another surgery, it thank God it’s fixable!
Batata, I had cording, you need a qualified therapist. I was suffering from September to December, but the massage and stretches really help.
In other news, it turns out I have radiation induced pneumonia. A dry cough has been bothering me at night to the point I had to sleep in my recliner again. I thought it’s gastric reflux, and was planning to see a gastroenterologist. But my husband insisted on mentioning it to my oncologist, she contacted a radiologist, et voila! Now I have to take massive amounts of steroids for 8 weeks. Oh, joy...
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innaB, did they also give u antibotics for the pneumonia bcuz its infection? Crazy rads can do all this to us ..Sending you healing vibes..
Frog, Xeloda does seem really drying maybe thats bcuz we've been thru chemo before. I have dry bad top lip not cracking but all most to the point u wld think chapped lips..Im on day 3 for third attempt taking Xeloda, fingers crossed I can make it thru a week. I had a bronchitis feeling the last 2 attempts around day 4. Trying to desensitize myself by taking an allergy pill before I take xeloda pills.. i will keep up my protein during dosage, thanks for the tip. You inspire me to keep going as I wld like to stop but need to reduce reoccurrence. I am Tried today but I did have a month break. Oh, and the front of my legs extra dry even with me rubbing lotion on them twice a day..i had to use cortisone on them to calm the ichy feeling. Im really glad u can work from home u deserve it, its been a long hall..
Cyber hugs
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InnaB, it's lucky you found out about the pneumonia before it got serious. After all you've been through 8 weeks on steroids will go like a breeze. Hope you have a speedy recovery. No one warns you that the effects of the radiotherapy are so serious and long term
Frog and Urdrago, good luck on the Xeloda, hopefully the SEs taper off. For the dry/chapped/itchy skin you could try using plain olive oil, it really helped me, soothes itchiness, and moisturizes wonderfully. You might smell like a salad for about a minute
but it goes away almost immediately, and does give great relief, even on the lips. Since the chemo I've been trying to steer clear of cosmetics with chemicals, etc, and the natural stuff works great. I threw away all my creams. On my face I've been using a mix of Coconut and Almond oil, and it's moisturizing just as well as the big brands I was using before; I even use it to remove makeup.0 -
Ugh, Inna. OTOH, maybe you'll get tons of house cleaning done the next eight weeks?
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No house cleaning for me, still dealing with lymphedema in my right arm. Can I wake up from this nightmare, please?
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I'm prescribing Netflix and ice cream.
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OMG, InnaB, so sorry to hear this, but I'm glad you have the right diagnosis now. 8 weeks will go by quickly.
Duffy, I'm both so happy and so sorry that it was "only" the implant rupturing. Glad it isn't worse, but surgery is no fun. FWIW, my exchange recovery has been very easy. I was cleared to shower and drive by Day 5 - I just have to be careful and not reach out or up too far. I'm glad you're almost through the targeted therapy.
Urdrago, hang in there. Sending good vibes that this time the Xeloda will work for you!
Frog, good news about your dad. Sorry you are dealing with skin issues, though. I tried meditating, not mindfulness, but can't seem to keep to the routine of doing it. I only did it for about a week after my BMX surgery, so I can't say that it helped. Hoping mindfulness works for you.
Batata, good luck with the new MO on Monday!
Have a great weekend, y'all.
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Happy Friday All! Thanks for all the good wishes. I'm not too concerned about the surgery except being a little pissy because Ive been enjoying being able to workout again and I know I'll have to take 4-6 weeks off following the surgery. Hopefully the weather will finally improve and I at least can start walking outside.
InnaB - I agree with Ingerp Netflix and Ice Cream for next 8 weeks. I just finished the 4 seasons of Schitt$ Creek and loved it.
GAWarrior - glad to hear your recovery from exchange surgery is going so well.
Urdrago - I hope Xeloda goes better for you this time. For those of you dealing with dryness are you running a humidifier ? Our week in Mexico made me realize a lot of my dry issues are just from this long winter. I've cranked my humidifier up again.
Frog - I've tried to incorporate versions of mindfulness into my daily routine. I like Dan Harris' 10% Happier.
Have a great weekend! I'm super excited because we have tickets to Captain Marvel tonight. A great way to start the weekend.
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Enjoy the movie, duffy. Hubs is out of town but I'm thinking about taking myself tomorrow. :-)
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All, im still doing good. Im pushing thru this and hopefully to be able to complete 7 days of Xeloda.
Ingerp, I'll go with u to the movies..lol its been awhile since Ive been around germs like that..
Have fun ladies enjoy the Captain marvel..
Engine, how's Janice doing?
Finally we get to spring forward this weekend !! More sun light every day...
Cyber hugs
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Hello everyone! Sorry it's been awhile since I have surfaced. Working a lot. I did my City Bowling Tournament last weekend. Although I did not break any new bowling records I sure did have fun. Then I went out with the girls and drank beer and laugh and laughed. First time I let my guard down in over a year! Now of course I am second guessing myself whether I should have drank so much but it sure tasted good!
I have started watching all the Marvel movies. I have gone through Phase 1 and getting ready to start Phase 2. I need to catch up with everything so that when I go watch the next batch of movies all understand more. I've been kind of just seeing them sporadically and that's why I decided to just watch them all in order. Okay I can't remember the old guy's name that wrote these movies but I absolutely love looking for him in each movie! LOL So far my favorite one is Iron Man 1 when Iron Man says hey Hughie. LOL
Linda. How are you feeling? Are you liking the lymphademia machine? The only set back I can see from it is it takes up an hour a night. That is Alitalia of time for me when I work those nights. However that's probably what I needed the most because I've been cleaning and aggravating my arm. How about your trial? How is that going.
Innab perhaps you should talk to your doctor and see if you can score one of those machines. They do work like a charm. Mine was covered by insurance. You may want to check into it. It really does help my arm a lot. My eye brows are thinner and s couple of weeks ago my eye lashes started falling out only to be replaced by stubby ones. A girlfriend is ordering some stuff to help with my eyelashes to become thicker and longer. Will let you ladies know how that works out. My hair started straight like yours and then started curling. It'll be interesting what yours ends up doing. Hope your feeling better now that your getting the right treatment for what is wrong with you. Thanks for the selfie you're adorable!
Engine sounds like Janis is doing a little better with physical therapy. How freaking frustrating. You just get out of doing a cancer treatment for a whole year and you go into physical therapy because of a fall. I hope she's becoming stronger throughout therapy and feeling. Also, hope you are doing well too.
GaWarrier congrats on your exchange surgery. Hope things are doing well for you and not in too much pain. How long are you off work? From the looks of your picture your nose is healing quite nicely. How us Brycr feeling? Hopefully you both are getting stronger every day! I would have definitely participated in that wine drinking after everything you've been through.
Undrago good to read that you are finally getting back on board on your trial and it's working out for you. I bet you can hardly wait till you're done and you can actually take a break from all this. Your little grandbaby is absolutely adorable! I am going to check out the Awakening that you were talking about. It sounds like some pretty positive quotes to read.
Interg this might be a little late but yes I still have burning, tightness, and just plain uncomfortableness in the breast that I had the lumpectomy done. I have also noticed if I don't stay on my stretching everyday that courting tries to surface again. The gal that set me up with the machine showed me a great stretch up against the wall with my hands that when I first started doing it was kind of painful cuz it was so tight but now that I do it every day it seems to get looser and looser. I believe I read somewhere word gal said that her worst pain was the first two years after her surgery and then it started fading out. I had to giggle when I saw your statement about picking up a little something from Colorado. LOL
Deb you mr fur baby is so cute and cuddle looking. Glad to hear you're enjoying your new job. I have been doing job interviewing on top of everything else to try and get a higher-paying job so I can stop working two jobs. My only problem is is I don't have a degree. It really pisses me off that I am overlooked because I chose to go to work, and not go to school. I have over 30 years experience in the accounting world and it doesn't mean diddly-squat because I don't have accounting degree. I tried to go get one when I was in my forties but it's just too hard to keep my house hold a float, work two jobs and go to school. Now I'm 56 and I have no desire to go back to school. Good gravy by the time I get my degree because I won't be able to go back full time, I will only be able to do it part-time I'll be ready to freaking retire!! LOL
Frog I have always wanted to learn to belly dance ! How is that going? I bet it is so fun.
Duffy. WOW! That us really is good news! Sucks that you have to do repair surgery for that. Hopefully it's not too painful. Glad you had a wonderful vacation and got to relax!
Batata best of luck with your new Mo tomorrow! For all I know it's already happening because it's midnight here in Wyoming. As far as your arm and your rib cage feeling like you do. Pt and massage is definitely going to help that. Also stretching Faithfully every single day. It's pretty painful and it takes a while it's not an overnight fix by any means. If I forget to do my stretching I feel it for sure. Perhaps you can ask your new doctor about that machine that I use to pump the fluid out of my arm and back into my core. It truly does help! I completely understand what you're talkin about about not wanting to get a scan. My OC does a blood test every 3 months. He's feeling is that he'll keep an eye on my blood and if he sees anything going on with my protein levels then I'll do a scan. My next one comes up in April as well as my first mammogram on my breast that I had the lumpectomy. Working two jobs absolutely sucks! However, you are right by saying at least we have the energy to do that again. I get that you're super stressed. It would drive me crazy having to switch doctors in the middle of all this. I also wanted to let you know that my Mo told me that if my anastrozole was not cooperating with my body and too many side effects there are several other pills out there. Perhaps maybe you can get switched over to something that works for you without such bad side effects. Hoping this new Mo works out for you and you can finally find a little bit of peace.
Deleon it sounds like you've got most of your questions answered. The only one I can't see maybe someone saying anything about is the port. I was so thankful I had my port, even though I hated it the whole time I had it cuz it was so uncomfortable. But now that I'm doing zometa infusions and having to have them put an IV in my arm every 6 months and draw blood every 3 I am very glad I had a port! Sorry that you had to join the group. Hope you find as great a group out there as what I did when I started all this. This group of women and gent are awesome!
Okay sorry if I missed anyone. I am totally going to stay up on this board for now on because I sure did I have some serious catching up to do. I think of you guys everyday and I peek in and read stuff when I have a minute. I've said it before and I'll say it again you all brought peace into my world when you came into my life. I truly wish that someday we can all meet in an area in this world that will work for everyone.
Have a great week!
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Great update, Life! Maybe this will help with your movies: https://www.esquire.com/entertainment/movies/g13441903/all-marvel-cinematic-universe-movies-ranked/ . I saw Captain Marvel over the weekend and really enjoyed it. :-)
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Ingerp That site was quite entertaining. LOL Thank you for sharing
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A little birdie told me today is urdragos birthday...
Happy Birthday, Urdrago! Sending big hugs and even bigger wishes for a happy, healthy year!
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SWEET! Another Birthday!!! Happy Birthday Urdrago! Hope you had a wonderful day!
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Life1963, that was an amazing post and update. I always love your insights, and appreciate your advice.
Happy Birthday Urdrago, hope it was a great day!!!
GA Warrior, I hope it's someone's birthday again very soon, lol.
I got my PET scan results, and thank God and the Universe and Karma (and everything and everyone) they're OK, wohooo!!
So at least it's confirmed that the Mondor's isn't actually bone cancer in the ribs (what my FORMER MO told me). I have a lot of shadows on the bones, but luckily (I guess, lol) they're the same as they were last year. I literally couldn't sleep the night before the test, went on my own, and spent the time waiting trying not to bawl my eyes out. In the end, had an allergic reaction to the dye (luckily we did a small test first) and got hives, so they gave me an anti-allergy shot, spent the next day sleeping, lol. Chemo has changed my system, I never used to get allergies and now it's like everything gives me hives.
Seeing a new MO tomorrow, hopefully.
We really should plan a trip for us all to get together
. Love & virtual hugs to everyone. 0 -
Hooray for birthdays and clear scans!! Happiest of Tuesdays to all!!!
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Batata That is awsome news!
From the sounds of it we're going to have ourselves a nice little blizzard here in the next 24 hours . I wonder if it's really going to happen ? Every time the the warnings start popping up everywhere it's usually a little snow flurry. We are definitely do for one. My boss said she is going to do the snow dance in hopes it comes true. I don't mind snow but I hate shoveling!!
Like Ingerp says "Happy Tuesday everyone!"
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Batata, thats Great news. Is it cording??
I love Birthday posting!! Thanks everyone..
Im once again off Xeloda due to allergic reaction. I dont know what next.. but will keep u posted.
I wld love to met up with everyone..
Life, is it snowing? Stay warm its finially getting warmer here in Michigan..
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Urdrago, my Bitmoji doesn’t work here for some reason, so here are the regular ones instead 🎊💕🥳😍🌈🎆🍷🥰🎂!!! Too bad about Xeloda, but I am sure your MO is coming to come up with something else.
Batata, hooray for the clear scan!!!
Life, great post. My lymphedema seems to be improving. I hope it will be completely in check by the time I go to Mexico in April. Badly need some vacation!
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Hi everyone,
So sorry to hear, Batata, about all that. I am glad the scan came out ok.
Happy Birthday, Urdrago!
Janice's shoulder is improving, but she still cannot lift it very far. The ortho thinks she may have a torn rotator cuff, but he wants her to continue PT and see how it goes. Janice has a routine colonoscopy next Monday and we see the oncologist again early in April.
We booked an Alaskan cruise for late July. Really looking forward to that!
Hope everyone is well and prayers for a healthy year!
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