Chemo Starting September 2018
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Thank you Sheri! I'm feeling pretty good now other than the cold I still have. Went back to work today but they somehow deactivated my account so I couldn't login for almost the whole day. So much for doing any work! Definitely feels a little strange to go back to “normal life", but it's good.
My nail beds are dark too. Did your nails grow out of it, or the color just turned back to normal? Still, this is way better than the nail bruises from Taxol.
BeingPositive - Sorry you're having a hard time with Xeloda. I brushed my teeth and did baking soda rinse few times a day during AC to keep mouth sores at bay. Really hope the next cycle will be easier for you...
Met my MO today and I'll be taking Tamoxifen, but won't start until after my DIEP surgery since it can cause blood clots. She did say that exercise should help with joint pain caused by Tamoxifen so I'll definitely be exercising.After that will be 3-month follow-up, then 6-month follow-up. One day at a time...
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Piksie, congrats on finishing rads! Super happy to hear that so far the SE's have been relatively easy on Ibrance. I hope it continues and that you get over your cold soon.
Being, I was wondering over the weekend how you were doing on Xeloda. I'm sorry the SE's have been tough. I've read that the usual cycle is 14 on/7 off, but I think MSK does 7 on/7 off to reduce SE's, so that might be worth asking your MO about if you are on the longer cycles. Wishing it goes fast for you and the SE's get easier.
Brink, hurrah for finishing chemo! I can't believe you're back to work already. I had a similar thing happen when I started my new job. It took them 3 days to set up my account so I kind of just hung out and read the internet. In retrospect it was probably a nice way to ease back in. Good luck on tamoxifen, too. It's so interesting to me who's on tam vs. OS and AI. It seems to really depend on the MO. Aside from the migraine, tam has been ok for me. Definitely some joint pain and a TON of fluffy white facial hair, but very manageable.
wanderweg, I am so sorry about your experience with the massage. I agree with everyone that it is especially bad coming from someone within the cancer centre. I think it is well worth saying something -- but also that you shouldn't have to feel it is your responsibility to make them do their job properly.
Sue, thank you! Your message gave me such a warm and fuzzy feeling. I, too, wish there was a way to bypass the 3 hour flight between us. I will definitely look you up if we make it to Sydney and I hope you will do the same if you come this way! I hope, too, that you're feeling better from rads. I finally turned a corner this week and am so relieved to be on the mend though I think it will be slow going for a while.
JNKK, I am with you being excited about the day when I can look at my calendar and not have a million cancer-related appointments! Let me know how threading your facial hair goes. I definitely need to do something about mine, but there is way too much to tweeze.
I am finally starting to feel better from rads, though I think I have at least a week of continuing to use the burn gel and dressings which basically cover everything with goop that leaks out onto my clothes. Why is there always something else??! Also my trial did get pushed by a week so now on Monday I go up for the screening, blood tests and an ECG. I don't know why that's part of the protocol or why it's ecg and not a muga scan which I had before chemo, but I will ask those questions. Then next Friday the 12th I find out if I get the drug or not. I am obviously really hoping that I do, but I am also afraid of SE's especially since I would have to take it for 2 years. Verzenio is in the same class of drugs as Ibrance, so it's encouraging that you're having an ok with it, Sheri. If I don't get it I will have to talk to the MO about what else I can do to prevent recurrence. I am also still only on 10mg of tamoxifen so I imagine he will change my hormonal therapy regardless. Can't wait until I can stop thinking about this stuff all the time!
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beeline - Glad to hear you’re feeling better My MO told me she would only consider OS and AI for people with larger tumors or node involvement. Given that I’m only 30% ER+ I’m not sure how much hormone therapy would help me anyway, so I didn’t push for OS and AI.
My GYN did recommend me to remove my left ovary due to endometrioma growth there so I’ll do that maybe during my DIEP phase 2 and then see whether I’ll still need OS.
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ladies great to read all your updates.
I start radiation today. Wish me luck !
Hope everyone is doing well.
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Good luck, sunocean!! Bee and I have just finished - not fun, but done. Moisturise, stay greasy!! And keep hydrated. xxx
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Sunocean - Good luck on the rads!
Just reading through and catching up. And wanting to update everyone on the massage therapist situation. I’d posted about it on the local breast cancer FB page, not knowing she was a member. She contacted the person who runs that page who contacted me, and I ended up having a phone conversation with the massage therapist. She was distraught about what had happened, said she didn’t remember saying that and doesn’t feel that way at all, and that she got into massage specifically to work with breast cancer patients. She was crying on the phone and offered me her supervisors number so I could report it. But after taking with her, I felt convinced she didn’t mean what she said. And I wonder now if she misheard something I said and was responding to that rather than to my situations. That’s the only thing that makes sense to me. The conversation was helpful and I’m confidantthat she’ll be more careful in the future.
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Wanderweg, I'm happy to see that you got closure with the massage therapist. Going forward, she'll be more careful with her words and will have you to thank for it.
Sunocean, good to hear from you!!! Good luck with radiation. I hope your skin holds up. I did very well with prescription Mometazone. We live close enough that I could bring you an unopened tube (and finally meet you, neighbor!) The boys and I could take a road trip Sunday. We've had so much rain, the drive ought to be beautiful! Let me know...
My ceremonial bonfire is tomorrow. I'm looking forward to the bonfire with friends; I'm not looking forward to anyone making it "The Sheri Show". I've told everyone to bring something that's been weighing them down and throw it in the fire. I'm really sick of cancer being center stage. How do I throw that in the fire?
The cruds are clearing up. Yay! But I think I gave it to my 10yo.
Have a great weekend!
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Piksie - I hope the bonfire is fun today! At the UU church here there is a service at the end of the year where you write something down that you want to let go of in the coming year and all the slips of paper are burned. Mine was "Cancer" this year. So maybe writing "Cancer being center stage" or something like that on a piece of paper and throwing that in, too?
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Piksie thank u so much for offering the tube. I would love to try it. I have only gotten rads 2 times and I'm already feeling discomfort! I've always had sensitive skin so im not surprised. I purchased miaderm and im hoping it helps. this sucks. I am about 2 hours away and weekends are tough with baseball season right now! My boys have games. Ugh. Maybe i can ask my RO to prescribe it.
How did the bonfire go?
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The bonfire was lovely. Everyone seemed to have a great time. The weather and the view were perfect.
However, the universe strikes again. My mother told me this morning that she has uterine cancer. Found out Friday but wanted to wait until after the bonfire to tell me. Still in disbelief.
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Oh Sheri, I’m so sorry. That is devastating news. I don’t know what words of comfort I could possibly offer, so I am just sending love from NZ and holding you in my thoughts.
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Piksie, I'm so sorry to hear this unfortunate news. I dont know what to say but know I'm thinking of you.
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Sheri - It is such a shocker... I’m so sorry to hear that.
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Sheri, I’m so very sorry about your mom. What terrible news. Holding you both in my heart.
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piksie love to you and your mum! I do hope her treatment is straightforward and completely successful. Sorry you both have to think about all of this
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Sheri, I am so sorry to hear about this terrible news. Like Sue said, I hope her treatment will be easy and successful. Sending my love to you and your mom. I will be praying for you both.
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Piksie, so sorry that both of you have to go through this. Sending strength and love. Both of you will be in my prayers.
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Piksie, I'm so sorry about your mom! God bless her and keep her. You and she are both in my prayers.
I've had kind of a scary day. A while back (not sure how long-- a few days?) I felt something rubbery under one of my armpits. It wasn't until yesterday that it occurred to me that it could be a Bad Thing, so I went in to see the NP today. He said he didn't think it was cancer.... That it felt like a drain or something that might have somehow been left behind in March when I had the implants put in. He said he'd call my surgeon and call me back.
Well, she said it's definitely not something felt over from surgery. So they are trying to set up an ultrasound for me next week. I honestly wasn't worried about it being a reoccurence until now. It feels like a horizontal mass, really kind of like a drain... but really rubbery. Nothing like it on the other side. I guess it could be scar tissue, but it's far enough away from my breast on the left that I just can't quite envision that.
I'm going to see my kids in Nashville this weekend and really looking forward to it. But I am worried about them being able to figure out that I'm concerned. My daughter always knows when I'm bothered about something.
Grrrr. There's always something.
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Fairchild - That's disconcerting. But even though the PS says it's not related to the surgery, it might be. I was told at first that my neuoropathy in one foot was unrelated (even though I woke up from surgery with one foot not working), but later it turned out it was caused by the surgery. I think surgeons can be quick to deny liability. I hope you are able to enjoy the visit and then get some answers when you get back.
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Hi everyone. I'm sorry I have been AWOL lately. Very busy at work and with life and getting back into the swing of things. I am following the thread and hope you are all doing well.
Piksie: I am so sorry to hear about your mom. Sending my best.
Fairchild: I hope they figure out what it is soon!
Wanderweg: So glad the issue with the therapist worked out. I was going to tell you to go kick some ass because it certainly was not appropriate.
I hope you all have a good day. Marathon Day in Boston. It is more somber than it used to be but still a great day. One of my staff is running his first marathon. He is a 29-year cancer survivor. Was diagnosed at 9 and given a 50-50 chance. Another friend is on his 9th Boston. He was diagnosed almost 10 years ago with a weird cancer that attacks the upper arm bone. He has a titanium rod instead of a bone thanks to a "lucky" car accident that lead to a sooner detection than it probably would have happened.
Love to you all.
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Hi everyone, I hope the quiet thread is a good sign of everyone being busy in their lives and not thinking about BC. As some of you know, I found out last week that I was randomised to the control group in the trial I spent 6 months planning for (and still have to drive 4 hours round trip every two weeks to not get the drug!). It felt like a huge blow and I'm still not 100% sure that I won't try to seek out some further treatment even though that would mean leaving New Zealand. But for now, I have decided to take it as a sign that it is time to stop obsessing about BC and possible recurrence and start rebuilding my life, whatever that means. I am a month out from the end of rads and finally healing. At 13 weeks PFC I have a ton of hair though it is all silver/grey and definitely not the straight hair I had before. No trial drug means one less set of SE's to contend with which is probably good for getting back into a running routine and eventually adding some yoga and/or strength training. I feel like I need to do the equivalent of deleting the bco.org "app" for a while. You have all been such a comfort and support through all of this, but now I think it is an excuse for me to not try to move on. I will still be on the FB group but will probably be pretty quiet here.
I hope you all have a lovely Easter and that those still in treatment are finding it manageable with minimal SE's. Lots of love to everyone.
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Whew! I'm fine! My ONC sent me for a mammogram of the lump under my left arm. I had the wonderful radiologist who originally diagnosed me. She said it's a spot of fat necrosis-- basically fat died there and formed an oily lump. No risk of cancer, although she is having me come back in 3 months to take another look at it just to make sure it's not bigger. She said her bet was that it would go away with time...although sooner would be better to get rid of it in my opinion, b/c it rubs on my bra. I have to say I feel like I dodged another bullet here, and I've been so excited that this is not cancer!!! And I did have a wonderful visit with my kids last weekend! I'm sorry I'm not on facebook much these days-- It's close to the end of the semester, so I have a TON of grading to do. But I check in here from time to time, just to check on everybody--
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Fairchild so happy for you!!! Wonderful news !!
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beeline - I did breathe a sigh of relief when my MO didn’t suggest any new trial with new chemo or Lupron shots, even though I did feel uneasy about not doing more to prevent recurrence. I suppose that’s something that’ll be on our minds for a while. If you ever change your mind and decide to come to New England let me know!
Fairchild - So good to hear that it was fat necrosis! I heard that massaging it can help make it go away.
As for me I do find myself checking BCO less often than before. I’ll probably check in on this group still, from time to time. Take care everyone!
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Fairchild, so happy for you. It is relief and sign to leave this behind. I know it is easier said than done, but seems all of us are looking forward to move on.
Beeline, wishing you the very best in next chapter of life. I truly wish and pray that none of us have to be part of this experience again in future. Good to know about your great hair growth, let it grow!
Brink, best wishes to you for upcoming surgery. Keep us updated and let me know if you have any questions.
I had my stage 2 surgery on 19th. It went well and thankfully not as exaustive as first one. I am happy that this part of treatment is done now. Also as I had too many SEs from just one cycle of Xeloda, MO said benefits are not as high as the issues of SEs. She said it is fine if I don't continue with Xeloda and if I really want to try can go for 7 days on 7 days off. I had to stop it anyway before surgery. But still SEs continued. Had itchy skin, palm skin is still peeling off. Considering all these SEs, I have decided not to go ahead with Xeloda part of treatment. Hoping that less toxins and healthy diet with exercise will be enough to keep this big C at bay. Only time will tell!
Will keep checking in here and big thanks for wonderful support and motivation when it was needed the most. Hugs!
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this board has been quiet for a while. I'm hoping that's a good thing.
I am doing well currently doing rads. I have 6 more to go out of 25. So far my skin is doing well. Definitely suntan burned but not painful. How is everyone else ? Piksie would love to hear an update about your mom? Hope shes doing well. Hugs to everyone.
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BeingPositive - Thank you! My palms were peeling around 4 weeks after finishing AC too. I just ended up putting on a lot of cream and it went away after a week or so. Hope you are recovering well too. How is hormone therapy going for you?
My DIEP went well although I had to get an additional surgery to clear away a fluid buildup and get my drains working properly. Recovery has been better than my UMX as I have no sensation in my breast anymore anyway. I am still getting random bruises here and there presumably from hematoma but overall no issues. It’s good to feel better everyday and being able to lie down more flat than the day before.
Sunocean - We’ve been chatting about post-BC stuff in our Facebook group so not everyone is updating on this forum. Feel free to PM me if you would like to join it and be kept up-to-date on everyone!
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SunOcean - thanks for thinking of us. Mom is doing very well. We had a scare about 4 days post-op (total hysterectomy) when she fell, but she's recovered like a champ. Follow-up is 5/14 when we learn of her treatment fate, then she's taking a 2-week vacation.
Glad to hear you are handling rads well. Almost over!Brink - I hope you're lying flat!
I'm on my second round of Ibrance and still trying to find a level that is safe for me. At 125 mg, my neutrophils dropped to .5, so I took an extra week off and moved to 100 mgs. In reading about this stuff, it appears that the dosage isn't as important as with other meds. As long as you're taking it, it is just as effective as the higher dose. The science of it doesn't make sense to me, but I won't be upset if I end up at 75 mgs. Fewer SEs sounds wonderful to me! MO is being very supportive of my upcoming vacation. He's planning my Ibrance schedule around it and doing my f/u bone scan the day after I return. Optimistic for NED, but if not, I don't want to know until I get back.
Zolodex and Zometa for me today so I took the whole day off. Lounging with my cats for the morning, taking some ME time.
Hope you all have a fantastic day. SunOcean, we miss you on FB.
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Sheri - At 3 weeks after DIEP I can finally lie down flat and not feeling like I’m stretching the skin, yay!
My flap is getting a bit red with fluid buildup though so I’m given antibiotics... I suppose my body still has to fight thru all possible infection from all these healing spots. Almost feels like I’m on chemo again with low white blood cell counts and have to worry about infections. Still, all the drains are out and I’m starting to feel normal again!
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I finished rads last week. 25 sessions. I made it but 4 days post rads was so painful. peeking skin and just unbearable. Now though I'm healing and happy to be on my way to healing.
Have a birthday coming up. I will be 40. Its bitter sweet. Happy to be here but sad of everything this has done. My sister text me and said it all goes down to shit once you turn 40. And I said no it goes down to shit when you get cancer. Ugh. Trying to stay positive and thankful of my results thus far. I'm sure it's normal to feel what I'm feeling. Miss you all. I dont have Facebook and refuse to use it. Lol. Hope you are all doing well.
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