Chemo Starting September 2018
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Fairchild - I totally get what you mean by feeling like this whole thing is unreal. I was a picture of health prior to my diagnosis and really felt fine throughout since then other than chemo SEs.
On radiation, for mastectomy usually it is only recommended when there’s lymph node involvement. Since both of us did not have node involvement radiation is not recommended.
On testing I suppose I’ll have some follow-up scans. If you would like additional tests I would recommend enrolling in a clinical trial. When I enrolled in mine they ordered a whole bunch of blood tests, bone scan, CT scan and ultrasounds, which really helped to put me at ease.
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Yesterday I finally got my last AC! I believe I’m the last person on this thread to receive infusion chemo. So glad this is over! Thank you everyone for your support and helpful advice!
So far my nausea is in check thanks to the acupuncture session I got yesterday afternoon. Here’s to feeling better everyday! 👍
Sheri - Hope your zaps go smoothly this week and next week! NED!!!!
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Brink, congrats!!! Let the healing begin!
Leslie, did the drains come out yesterday? For not being articulate, you touched on a lot of great points. I'm not going to address the testing for mets because it would be negative, and that's certainly not what anyone here needs! Keep looking forward, and live life with purpose. The asthmatic teens who smoke sounds like a fascinating project! Being where I am now, it shocks me every time I see someone smoke a cigarette. I would love to approach them with "WTF! Idiot!". I would never, but I think it every time.
Brink is correct, after a BMX with good margins and clean nodes, radiation is not recommended.
As for an invisible disease that is trying to kill us, that strikes me to the core. I'm back to strength training at the gym as of Friday. Everyone is commenting that I look healthy and strong. I say thank you, but I know inside that this disease is lurking and will strike again. It feels very real to me, but I've had 3-½ years since the first diagnosis and three months to get my head around mets, which wasn't really a surprise. I'm a realist, and approaching it this way helps me keep going. (ISTP, very strong T)
Anyway…. Sorry for that, but thanks for being my sounding board. Off I go to 1 of 5 spine and rib zaps. Brink, thank you for the well wishes. NED, here I come!
-Sheri
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piksie also praying for NED and hoping all goes well. I think it would be educational for us to hear from you even if its negative. That's how we learn by knowing what to look out for or others experiences. I guess what I'm trying to say is dont feel like you cant be negative here. Were all here to support one another.
As for radiation, after my BMX I had clean margins and 0/25 lymph nodes. So i had PCR. However, before I started chemo one of my lymph nodes tested positive and was grade 3. And given it was herceptin positive they are recommending that I still get the radiation given I had lymph node involvement before chemo.
I have Kaiser and my oncologist said they dont do regular testing unless you have symptoms. Go figure. You definitely have to be your own advocate.
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I checked my patient portal and they scheduled a mammogram and breast ultrasound for me in July. The ultrasound says for both left and right. I didn’t know you can still do ultrasound after mastectomy but sounds good to me.
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brink glad to read you are done. Yay!!!!!
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Sunocean - Thank you! Still have my DIEP in April, and hormone therapy, but yay!
Sheri - How was your first zap today?
If anyone knows your follow-up plan, please post!
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Hello all, and apologies for disappearing for so long! No excuse really. I have been reading your posts and thinking of you. It is lovely to see how many of you are now far along the process and looking forward to nothing medical. So sad to hear of alarms, hopefully false, and complications happening. It really doesn't go away, does it. Good thing that as women we can usually juggle many considerations at the same time. Although just sometimes one thing needs all our attention, let's try not to often let that thing be BC more often than it deserves.
I started rads in late Feb, and have now had 17/25. I'm now getting to the sorry-for-myself not-just-red, getting-pretty-sore-and-itchy stage. Today I'm working from home, topless, and it is so much more comfortable. Just a couple of months ago, topless meant going without a head covering! Lucky it's warm early autumn here. A real problem, though is keeping the radiated area which includes my clavicle area, out of the sun. I has become really sensitive and I just need to cover it completely. With something super soft. That's a huge reduction in wardrobe options right there:-) It's the detail that gets you, isn't it? The car seatbelt now rubs in the wrong place, so I'll arrange something soft to shield that. And my beautiful grandchildren who are small and express their love very physically!
The whole radiation treatment process is remarkably hard emotionally. That came as something of a shock - I'm pretty resilient normally and I really did not expect it to hit me so hard. It didn't help that a couple of mis and poor communications early on undermined my trust in the process. I am so grateful for a couple of ladies on similar schedules who I see in the waiting room most days. We've been a great encouragement for each other. I did have a melt down after the first few sessions when I developed lymphodema, and insisted on seeing a dr (mine was away). I did get some better information, and in the end decided that seeing it was f..d anyway, I'd continue. Not my usual more professional phraseology, perhaps, but concise lol. So now I'm wearing a sleeve (so grateful the hot weather is nearly is over!)
Ramble over. Prayers for you all.
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Y'all sound like you're doing so well! Thanks for the info about radiation. I never thought I'd see the day when I would wonder whether I should have MORE treatment-- ha! It's good to know it makes sense that I'm not having radiation since I didn't have lymph node involvement. These days I find myself worrying more about the future and cancer.....whether it could come back, how advanced it could be. It's totally not a helpful line of thinking, but I guess understandable. Not having had a bone scan or anything to rule out that I have mets, I find myself thinking about that more than I'd like to admit.
I actually told the chemo nurse that on Wednesday when I went in for my infusion. To my horror, I teared up when I told her about recent mentors/friends dying from cancer. She said that it's very common in her experience that patients worry more as they begin to get close to the finish of treatment. I guess we feel safer in the midst of treatment than when we are "on our own."
But aside from those worries, everything seems to be going well. I got my drain out on Monday without any trouble. The surgeon did say that there may be a small seroma forming on the right side, the side that's been healthy so far. But she didn't want to remove it. So I go back in 5 weeks, and then in 6 months. In the meantime she said to call if I thought it was getting worse. And my anemia was a bit better on my bloodwork on Wednesday, so I'm hoping that this strategy of adding iron to my infusions will work.
Congrats to Brink on finishing AC!!!! I feel like that is such a major step that we should be able to ring the bell for that alone!!! Piksie, I want you to address your experience as long as you feel comfortable doing so. It's not anything we haven't thought about already. And I hope the zaps went well and didn't hurt! Radiation doesn't sound easy at ALL! Sue, it's good to see you back here.
Take care, everyone!
Leslie
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Piksie - I hope you never feel you can't share anything you want to about this process. Talking about mets is part of it, and we're here to support you.
Brink - Super big Yay! to finishing chemo!
Fairchild - I'm glad you got the tube out. I sure felt like that was a relief. Is your surgeon thinking the small seroma will resolve on its own?
Sue - Nice to hear from you. I hope the last 8 rads pass quickly. I hate that it's gotten so uncomfortable - good that it's warm enough not to have to cover up at home!
I actually have no cancer-related appointments until next month, when I see the integrative care guy again. Feels kind of weird. My gyn checked me very, very carefully at my annual yesterday and it reassured me to know that since she's had a mastectomy and then a recurrence, she knows what to look for. She also said, "Whoever did your breasts did a great job!" Which made me laugh out loud.
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Thank you everyone for your well wishes!
On day 5 of AC #4 I'm finally feeling more normal. The big difference this round is my red blood cell count which has continually dropped throughout the last few infusions. Looks like the Neulasta doesn't help with red blood cells. As a result I have had to sit down several times due to dizziness, but overall ok.
Sue - Sorry you're having a hard time with radiation. I've been putting on a silk scarf around my neck to cover my port, and a mastectomy pillow in the car for seatbelts. Hope it helps...
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Hello All,
I apologize for disappearing midway through the process. I do follow along here but I haven't really been of the right mind to respond since mid-AC.
I did ok with AC. I'm doing less well with radiation, and like Sue, this surprised me. I think the constant dailyness of it just takes a toll. also like Sue - i'm grateful for the people I see every day. They do help. i'm also not enjoying the rash and "cracking" under my right breast. I know it will pass though.
Brink- congratulations on the end of Chemo. Its a great great feeling.
Much love to all
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Hi pcranky, nice to see you again and no need to apologise! I'm sorry that rads have been tough. And same to you, Sue, especially sorry for the lymphedema! I developed truncal/breast LE almost right off the bat post-surgery and it is a real pain. I definitely found rads far easier than AC, but I was also on the hypofractionated schedule so it was only 3 weeks of treatment. That said, I am now 10 days out and in so much itchy pain I had a visit from the district nurse today and then cried on the phone to the radiation department until they took pity on me and suggested I come in tomorrow. I honestly can't believe it is so bad and definitely did not expect it! My skin hasn't opened up and hopefully it won't, but it is miserable.
Sunocean, that's great that you had pcr! I'm sorry you still have to have radiation. Hopefully it will be gentle on you.
Brink, congrats on finishing chemo!!
Piksie, I genuinely hope you can feel free to express whatever you need to here, positive or negative or really really shit. Hope the rads to you spine are going well and leave you NED.
Fairchild, I have also heard that a lot emotions can come to the surface when you finish treatment. I'm glad you are healing well from surgery. It sounds like things are starting to come right.
Wanderweg, it must feel strange to have no appointments. I as much as I've enjoyed my one week respite after finishing rads, I can easily see feeling adrift with no hospital visits on the calendar.
The two families who have been our biggest support through all of this want to celebrate "the end of treatment" with us on Friday. I have already decided to be a good sport about it -- they were so much help, I want them to feel good -- but of course it's not really the end. And with my chest so unhappy from rads I may struggle to put a happy face on it. Has anyone else had a similar situation?
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Beeline just a quick note as I’m on the train on the way from work to today’s treatment. The most relief I’ve had from the itch is what they describe as a saline soak. You soak then wring out a clean pad in weak tepid saline and lay that on the area for 10-15 minutes. Remarkably effective and can do up to four times a day. Hope yours eases soon! It’s miserable
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Thank you Sue, I will give it a try! Do you mix the saline up yourself or buy the sterile stuff from the chemists? I am just back at work after spending 2 hours basically crying in an exam room until they finally brought the RO in. Apparently it's not *supposed* to hurt this much! That said, once I got past the guard nurse, everyone else was lovely, though none of their creams or gels helped so in the end all they could do was send me home with a script for painkillers. Ugh.
Edited to add - the other fun outcome of this is the trial MO now wants to delay my start. I understand and agree that we don't want to overload my poor healing body, but I already wasn't due to start for 2 weeks so now it will be pushed out from that. I am worried about the fact that I'm only on 10mg of tamoxifen after the migraine. And all the dates that I had organised work around will have to change. I am so very over this right now!! Of course I have also been up since 4:30 this morning which no doubt isn't helping...
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Beeline, I just mix it up myself with a couple of teaspoons of salt in a litre of boiled water. The nurse who gave me the instructions is seriously unreliable, so I googled for clarification. So sorry it's hurting so much!! Stamping your feet a lot would be appropriate, I think, just don't hurt yourself. By the way, I've been "upgraded" to Flamogel for the worse bits, and various dressings plus a pad under my arm. There may not be 100% compliance with some of that stuff. Our own common sense and knowledge of our own bodies is very valuable. Oh we are becoming rebels lol. I have heard that a constant level of Tamoxifen is more important than the actual dose, can't attribute that though. Shame we're not closer than the country next door.
Hey, I also get your problem with the planned "celebration". Lovely of them to want to do that, and you will enjoy it. I'm sure they'll understand (maybe with some help from you) that you are now able to start recovering. My darling other half seems to be planning something for Tuesday night, as my birthday is Monday (yes, April Fools'). Hope it won't entail staying up late! Or drinking alcohol, or enjoying food. Ah, I'm a miserable bitch - I'll grin and be gracious, as I'm sure will you. (They don't have to know what we're smiling at).
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Hi pcranky - how many more do you have to go? Hope you're finding good solutions for your skin. The simpler things seem to have worked best for me. It takes some trial and error, and a bit of luck as well, I think.
Brink, are you starting to feel human? I can reassure you that for a while this morning I felt quite alert and intelligent:-) Actually more and more each day, and it does feel good. I also had the low blood pressure even though I kept good blood cell levels. It's still lower than previously, but you've reminded me that the dizziness is much less often. Hope your immunity improves soon.
Wanderweg can I hear a hint of normal life? What a wonderful idea! I went to talk by a gl from Tennessee last week, Lisa Harper - what a character! And gorgeous accent.
Piksie, please let us know how you're going, when you're ready. A bit of normal life for you would be just the thing.
Is anyone else having continuing gut issues? I had to take imodium right through chemo, especially on Taxol, and though I've weaned off that, I still need one anti nausea med and my gut flora is clearly not back to its normal robust self. Next project, I guess.....
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beeline - So sorry to hear about the itchy pain you have from radiation. I hope the pain med and Sue’s saline soak help...!
Sue - I’ve had a cold for weeks now and am still trying to shake it off. Most days it’s not bad but some days it gives me headache and stuffy nose the whole day. As the weather here is getting warmer I’m hoping more time outdoor will help me feel stronger! Next Monday (your birthday) I’m getting ready to go back to work so I hope I’ll be recovered by then!
On celebrating I’ve been telling my husband honestly how I feel everyday and he has been relaying that information to our friends so no one has jumped on the idea yet. I hope beeline you will be up for it come Friday!
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Piksie, please feel free to express your feelings and thoughts. This is a safe place for us to all say whatever it is in our mind. I certainly have not been holding back anything. I am thinking you should be done with the radiation either today or tomorrow? Are they going to be any further scanning to see if they got all the bad cells? Whatever the case is, congrats on finishing with this part of the treatment too!
Fairchild, I hope you are recovered and moving on! I know I am late to answering, I had radiation before finding out that I needed chemo also. I had lumpectomy, even though there is no nodes involved and clear margin, doctors wanted to make sure there is no other cancer cells lurking around, so I had 20 sessions of the radiation.
Beeline, I am so sorry that you are having so much pain! I hope the saline that Sue told you will bring some relief for you. Otherwise, I will mail a jar of aquaphor to you!
Brink, I hope you get well soon before your first day back to work!
I have heard a lot of ladies feeling lost/unease after the treatment, but I am the exact opposite. I love seeing my calendar with no appointments with doctor visits. I hate going to the cancer center, it reminds me that I am a cancer patient (or I was a cancer patient?). I was really happy when I was told that I didn't need chemo (at first), so I prepared myself going forward with surgery and radiation. Then to find out that I needed chemo, I can't tell you how terrified and lost I was feeling. I guess the order of my treatment was reversed plus I hated the chemo, I felt fine to not seeing my doctors. I just want to move on with my life and hoping the best that this pesty thing NEVER returns!
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Hey, everyone! This thread got busy all of a sudden!
Sue and beeline, I'm sorry about the rads pain. It really sounds terribly unpleasant, and I hope you guys heal up soon.
So, can I vent for a second? I got a 30 minute massage voucher as part of my integrative care consult and went today. The massage therapists are in the cancer center and work primarily with cancer patients. In fact, the IC doc said breast cancer patients are the majority of their clients. I told the woman I couldn't lie flat on my belly and she rolled up towels to put under me (which helped). But when I commented that I hadn't expected how rigid the implants would be, she said, "I guess that's the price you pay for perfect breasts." I was floored. I said something probably incoherent about how I had had a mastectomy and the implants were so I'd have some sort of breasts, but I didn't like them. She didn't say anything, but by then I was crying. (Face down, and quietly, so she didn't know.) I spent the first ten minutes of the massage telling myself to just let it go. And then she asked what stage I was and when I said one, she laughed and said, "Then it's all in the rear view mirror for you!" What?? So I guess I should stop taking my tamoxifan and erase any stories of recurrence I hear from my mind? I just said, "Not exactly. I had a very aggressive cancer." But I shouldn't have to say that. If it had just been some goombah on the street, I could overlook it, but this is someone who is a professional who works in a freaking cancer center. I will never go back, but I haven't decided if I need to tell someone about what happened.
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Wanderweg, I believe you should inform the cancer center, if only so that they train this therapist. Had this happened with a massage therapist not associated with a cancer center, I would not say this, because you'd have to chalk it up to ignorance. Honestly, unless and until cancer touches you, you're unlikely to fully understand the ways in which cancer will never leave your life, but that therapist NEEDS to have a better understanding. Her comments about your breasts alone warrant you mentioning this to her superiors.
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Oh, wanderweg , it's so hard when you think you're in a safe place and it bites you. I know it can take a bit to build your trust in the whole place again, and hope you can get some help from the centre to address it. We have to cope with both the hurt itself, and with the shock that we have such vulnerability. That's hard to stomach in itself for the strong resilient capable people most of us usually are.
She's a lucky lady to have not had to learn the truth we now know, but it is so scary that she is in a place where she can hurt beautiful people like you.
JNKK I don't yet have a clear (medical) diary, but do look forward to it! I sure won't miss daily rads! Glad you're enjoying being free of doctor appointment ties, and hope as well that it never is part of your life again.
Brink I hope that cold clears quickly! A few sunny days should make a lot of difference. Do you take Vitamin D?
And once again, congratulations to all of us for being so grown up and not once actually running away screaming.
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Beesy, I think you're right. Maybe this can be an opportunity for her to learn something. I will talk with the IC doc when I see him again.
Sue - I think that's what made it so difficult - I felt like the safest place to be vulnerable enough to get a massage would be the cancer center and I just wasn't expecting those comments!
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Wanderweg - I feel so angry on your behalf. She had no right to say such things to you. What did she mean perfect breasts??!! Our real one(s) have been taken away and now just have to make do with what we can get. And to downplay a stage I is totally incomprehensible. People can be so short on empathy! I did realize cancer center massage therapists may not be full-time employees and oftentimes are just contractors who work there occasionally, so I'm not sure what level of training they get. Still I'm so upset you had to go through this at a cancer center. They need to do much better.
Sue - Thank you! I have been taking vitamin D for months now. Maybe that's what keeping the cold at bay most of the time.
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Wanderweg, I'm so sorry for that massage experience. I would imagine the Cancer Center definitely wants to know about that sort of interaction. To Brink's point, it sounds like she is a run-of-the-mill masseuse who happens to get work at a cancer center.
Pcranky and beeline, I hope you find relief from your radiation pains. I had irritations, but minor compared to most. Prescription Mometazone likely helped, as does the fact that most of my breast skin has no sensation… My clavicle, shoulder, cleavage, and back itched, but never horrible. I'm hopeful that some suggestions here can help.
I finished rads on Monday. I rang the bell last week after the 33 breast treatments, so the end of the five spine rads was anticlimactic. I didn't get to know any of the techs in the five visits, and only one tech was around when I came out of the dressing room. I just wanted to get the heck out of there! I hit the Apple Store on the way home and treated myself to a new Apple Watch.
I've been following them for months because of the heart monitoring functions, so I decided to spoil myself.I started Ibrance last night and don't think it's having a bad effect. I also happened to pick up a sore throat at the same time, so my fatigue and headache would likely be here anyway. I sent a note to MO this morning because Ibrance comes with the same immunity issues. I learned that the key indicator for Ibrance is not WBC, but ANC which is a subset of WBC. While my WBC were low at my blood draw last week, ANC was within parameters, so I'm to continue with Ibrance and watch for fever (just like the good ol' days, right?) I've been gargling with salt water all night, hoping to kick it or at least get some sleep.
Side note, it was a small issue on Tamoxifen, but now that I'm on Zoladex, I have TONS of facial hair! It's very fine and almost white, but it's definitely there and excessive. I think I'm going to have to wax my face!
That's it for today, lovely ladies. I've taken Ativan and am ready to turn of the lights. Stay strong.
P.S. I'm strongly considering keeping my hair super short. I kinda like it.
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Wanderweg, I agree with all the ladies above, you need to address it with their intergrative medicine department. This kind of verbal abuse is NOT acceptable! Yes, I agree with Sue, until they go through it themselves, they have no idea what it is like. BUT how about if you don’t know what to say, then keep your big mouth shut?
Piksie, congrats on finishing all the rad and I hope you will not have too many SFs with Ibrance. I also have a lot of facial hair now, but I am going to thread it!! I actually have been plugging them off with a tweezer. I f*ing hate my facial hair. It makes me feel like a caveman!
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Sheri - So happy you are done! Here’s to feeling better and NED!!!
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Finally today on day #11 PFC I can drink water like I used to, which feels great!
One thing I did notice is the back of my hands have darkened since AC. Has anyone else seen this issue? I'm not sure if it will fade or not but it almost looks as if I tanned my hands but not my arms. My hands have become very dry as well so I have to keep putting lotion on, even though spring is here in New England.
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Sorry ladies for being away for couple of weeks.
Piksie, congrats on finishing rads! Hope Ibrance goes easy without much SEs. Treating yourself with Apple watch sounds perfect.
Wanderweg, sorry for such experience at cancer center. As Brink said, I think she might not have any real cancer patient experience. But they definitely need to work on it so that no one faces it again.
Brink, hope you are feeling better now. Best wishes for going back to work tomorrow. For me that has been the beginning towards normalcy.
Sue, Happy birthday in advance. Our bdays will have a whole different meaning now. Wishing fun and enjoyment and happiness on your b-day and years ahead. Wishing that radiation pain eases soon.
Beeline and pcranky, sorry for the pain. Hope all the suggestions are helping in healing. I do not have radiation experience, so can't help much other than praying and hoping that this phase passes quickly.
I completed my first cycle on Xeloda. Had the glimpse of some of the SEs already. Got few mouth sores, blisters on feet and sleepless nights. Initial 5 nights were very tough. After that at least I started getting some sleep. I wake up a lot at night and find it difficult to get back to sleep. Towards end of cycle, upper part of mouth has started getting rashes. Going to discuss all this with MO before next cycle starts. I have 7 days of break now, but dreading the next cycle. I really wish I didn't have to do this part of treatment. Let's see if I can continue. Rambling over! Spring has started and I am looking forward to few vacations. This week might go to see cherry blossom.
Have wonderful week ahead everyone!
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Brink, I hope you've continued to feel better every day! My nail beds turned dark, but they've almost returned to normal color. Just the smallest amount of shade at the tips. The rest of me remained its usual pasty, freckled tone.
Sore throat: I've continued to live as I would have (a couple of boot camps and a lovely hike) and bought a $30 forehead thermometer with 4.5 stars. My old self would just muscle through it, but maybe I can't do that anymore. No fever to date, but something has settled in my chest and sinuses. ANCs typically start to decrease on day seven, which is tomorrow, so I'm waiting to get my ass handed to me by mother nature. I'm pretty sure it's viral. What do they do for a viral infection? "fluids and rest". This ought to be interesting...
Other than the cruds, I feel great. I don't think I have any SEs from Ibrance. So when this is over, I get REALLY serious about antibacterial everything and perhaps take it easy when I feel something coming on. Piece of cake.
Stay strong, ladies. xo
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