Chemo Starting September 2018
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Piksie, crossing everything for NED for you! xox
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Beeline, hope all went well for you today.
Question for everyone who is ER+. Have any of your doctors brought up ovary removal? I had a GYN consult yesterday because I also have a few small fibroids and we discussed it. She said it is becoming more and more common and she expects my oncologist will raise it, but they typically wait so I don’t have to do two surgicies so close. She said it is not a big deal and that the side effects are no different than the lupron. I am wondering if it is becoming more common and more premenopausal women are doing AI/OS. Something to think about.
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Tigerlily318 - I'm meeting my MO on 4/1 to discuss endocrine treatment so I'll ask her then.
Surprisingly AC #3 has been the easiest on me. Probably because I got a 1-hour acupuncture session on day 1, and also because I switched from compazine to zyprexa. Now I don't feel sleepy all the time and can function around the house. Yay! Just one more AC to go!
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Piksie, I got on the thread before bed last night and saw what you posted. I am praying for NED! That will be the best news I have heard in a long time.
And in regards to what things I would burn (ps. I thought the bonfire idea is brilliant idea), I think I would first burn the notice that I have BC, then I will burn the bras that the hospital gave me after the surgery, then I would burn all the medicines that I took while undergoing chemo. But if I could, I will burn everything that is related to this damn cancer - not keeping any document that I actually have the BC. I also like Beeline's idea about writing down your feelings and then burn it off. Fairchild, how are you healing up?
Wanderweg, you look great with your hair!!
Tigerlily, I actually brought up the topic with my MO once, but she doesn't seem to be too encouraged with that. She said that we should wait and see, so for now, I am not planning on having my ovary removed. But I am sure I will NEED TO at some point, because my grandmother, my aunt and my mom, all had their's taken out for cysts.
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Fairchild how did surgery go?
Ladies I am so happy. My oncologist just called and told me my pathology report shows a complete response to chemo. I am happy given I only had 5 out of the 6 TCHP. So for anyone else out there in my position dont worry if you get less treatments than originally planned. Theres still hope!! I may still need radiation and I have a consult in 2 weeks. Even though I have PCR doctor said because I tested positive before chemo it's a good added security. but we will see.
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Sunocean, that is fantastic news! I am so happy for you! Thank you for adding in the reassurance about not getting the full course of chemo, too x
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Congratulations Sunocean! So will you need to continue with HP? Or potentially only radiation and then you are done?
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Brink, yes I will continue with perjeta and herceptin for one year. In my case I continue until September 2019.
I meet with RO in the next 2 weeks to discuss radiation. before chemo I had met with one and RO had mentioned they still may recommend radiation because before chemo I tested positive for one lymph nodes. So she said even if I have PCR she may still recommend it. She has to talk to her colleagues for recommendation.
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Thank you all for the NED cheers. I don't know when we'll scan after rads, but I'm going to scream it from the hilltops when it happens.
Fairchild, how are you doing?
Tigerlily, we've talked about ovary removal in the past, and I was considering it mostly to avoid the monthly Zoladex shot in the belly. Now that I have a monthly Zometa infusion, I have to be there anyway so the oophorectomy isn't as attractive. I'm really sick of surgeries…. If I have to go under again to fix lefty after radiation, I might consider it.
Brink, happy to hear you're weathering AC fairly well. I hope that's still the case!
Sunocean, YAAAAYAYYYAYY!!! What a relief!
Wanderweg, love the picture. You are in charge!!!
I got wonderful news today. I went to a MBC conference on Tuesday and one of the questions for the panel that included the Executive Director of Oncology from Pfizer was "why does Ibrance cost so much?" The woman asking has a co-pay of $4200/28-day cycle. I've been quietly panicking since then, but finally called today to find out, and my co-pay is ZERO! OMG!!!
29/33 to the breast today. I'm getting there….
Have a great day!
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Hair update from the changing room with the dirty mirror.
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Sheri - You look great!
Yes I’m feeling pretty much back to normal now even though I’m only on day 5. Makes me hopeful for the last AC!
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So I am just shy of a month into tamoxifen. SE’s have generally been mild to non-existent just some joint pain in my knees and hips — except for migraines. I’ve gotten them with my period since I was a teenager, but they went away entirely with chemopause. Until now. I’ve noticed them increasing since I first started, but today is day 5 of just unrelenting pain. I’ve been taking painkillers leftover from treatment but I can’t really continue like this. I’m going to have to write my MO and say I need to stop the tamoxifen, at least long enough to see if it gets better. But I am loathe to do it. I really wanted it to work and hate to be a problem patient. I am probably also anxious about it because I’ve only met him once and he didn’t strike me as the kind of dr who loves patients taking initiative. I always expected to be one OS anyway and have read that can help, so I’m not worried there. I guess I just don’t want to fail out of something I’ll have to be one so long within the first month. Ugh.
Hope everyone is having a nice weekend and Fairchild that you’re healing well
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Wow, wanderweg and Piksie, love your pics and great hair growth.
Piksie, from bottom of my heart I am praying for NED. What a happy news that Ibrance costs zero copay for you! Just 4 more rads to go. Almost there 👍🏻 I wish I could burn the time when this tumor started growing! But as I don't even know when that might have started, I would just visualize that the demons of negativity, tension, pain, loss are burning through the fire. Beeline's idea to write down those emotions is also great.
Sunocean, happy for you that you had a complete response to chemo. That is wonderful.
Tigerlily, my MO had said that some ladies prefer ovary removal instead of monthly shots, just to avoid monthly hospital visit. Otherwise it is not different. As I started lupron even before BMX, had not considered ovary removal. As of now continuing the shots.
Brink, good that AC is going well. Best wishes for the last one!
Beeline, sorry that tamoxifen is causing so much trouble. Have heard that you got to give 3 months for meds for body to adjust. But you don't have to suffer so much. Will be good to bring to MO's attention.
Fairchild, you are in my thoughts. Wishing quick healing for you.
This week I joined back my office. Feels better to feel normal! But Met MO for monthly lupron and she recommended to start Xeloda as I didn't have complete response to chemo. She said may be tumor got resistant after couple of infusions or may be 4 cycles were not enough or maybe ACT might have worked better. No one would know why tumor just shrunk but didn't go away completely. Recent study shows Xeloda improves 5 year survival and reduces recurrence by additional 4-5% in such cases. Hand foot syndrome is the most common side effect along with nausea and/or diarrhea. She said dose can be reduced depending on SEs. I am thinking to give it a shot. Another 6 months!!! Hoping SEs will be minimal and will be able to complete 6 months. Let's see. What I feel bad about is that after going through all this, what stats talk about is just for next 5 years. Nothing says it improves chances for say 20 years. I asked her if I can participate in any trial as would like to help in any kind of research, but she informed nothing is going on as of now. Anyway, we got to stay positive and hopeful.
Enjoy the weekend everone.
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Thanks, everyone!
Sunocean - I was so very grateful for my port. Made a world of difference.
Piksie - Sending my good thoughts for NED for you! And so good your co-pay is 0 on the Ibrance. It's crazy how expensive the meds can be, though. Shouldn't be that way for anyone. And your hair looks so thick!!
Brink - One more to go! What a relief that will be.
beeline - I really hate to hear that about the migraines. I used to have them regularly and they stopped with chemo, but they've not come back on the tamoxifen for me. I'm 14 weeks into tamoxifen now. Still get woozy with it, but that's it.
Being - Is Xeloda an infusion? I know that's frustrating to have to try something in addition to TC.
Fairchild - I hope you are healing up.
My SIL has her BMX scheduled in a couple of weeks. We talked to them (she and my husband's brother) tonight and they seem weirdly nonchalant about the whole cancer thing. I was wigging out before my mastectomy.
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Being, I’m surprised your MO is going so hard out for Xeloda. From what I’ve read, it’s quite rare to get a pcr if you’re HR+. Usually they are in a hurry to get us onto hormone blockers. I feel like I’ve asked you this before (sorry! Can I still blame chemo brain?) but is there something else that makes you high risk? Where are you being treated? In any case, you will do great if you go for it and a few of us at least will be on extended treatment along with you!
Wander, I was also freaking out before my MX. Funny how different we all are. Good luck to your SIL!
The migraines are really killing me. This is day 6. I’ve read that adding OS to tamox may help with them which would be good as it has otherwise been pretty fine. And apparently I am afraid to write to my MO as I still haven’t done it yet, but really have to today as I think stopping is the only thing that’s going to help!
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beeline, I hope you’ve reached out to MO. You don’t need to suffer unnecessarily. 😒 you have enough on your plate.
I believe I have my final radiation schedule. Three more boobie boosts. Tuesday I will start five zaps to my spine and three zaps to ninth rib, concurrently. Follow up scans will be approximately three months.
That will be right around my Costa Rica trip. I wonder if I should to do it before or after. I am inclined to do it after, just in case.
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beeline - I agree with Sheri. No need to suffer unnecessarily! Actually will you need to take Tamoxifen when you're on the trial?
Sheri - Will the spine zaps be stronger/more difficult to handle than regular boosts? NED!!!
BeingPositive - I'm trying not to look too much into % and such, since my mom was on the wrong end of the number game before. We just do the best we can and pray! I hope Xeloda's SEs are manageable!
Originally I worried about losing weight while on AC but now that is definitely not the issue. It's not that I feel hungry all the time now, but my appetite has changed. All my life I would start to feel slightly nauseated when I'm full, so it was rare for me to overeat and my weight has remained about the same since college. Now the nausea feeling is completely gone during my off-week so it's like the brakes are off! I wonder if this is something permanent. Hopefully I'll go back to normal after AC... We'll see
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Piksie, you are almost done! Amazing!! Hard call on the follow up scans, but I would probably do them after the trip (though might also spend the whole trip worrying about it...).
Brink, my eating habits have been all over the place. At the moment I am cursing the fact that I got rid of a bunch of clothes before my diagnosis last year because I decided it was time to accept I would never be that thin again. Now I am and my jeans are all too big, but I feel like it is probably temporary so I don't want to invest in new clothes that I will expand out of once I start eating normally again!
Thank you both for your support about my MO and tamoxifen. I did finally get over my fear of being seen as a wimp/quitter and write to him yesterday. He replied immediately to stop tamox until I see him in 3 weeks. For the trial I have to take hormone therapy, but it can be any, not just tamoxifen. I think on the trial website it says "doctor's choice" which I always found kind of funny.
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Hey, everybody, I'm back in the world of the living after having the TEs out and the implants in. The surgery wasn't really a big deal, but I caught a bug the day afterwards and have been feeling down and out with a sore throat and cough since then. Happy to be feeling more normal today finally. My incisions are a bit sore still, but healing up ok so far. I have a drain in on the side where I keep getting seromas....the doc warned me ahead of time that she would put one in, just for safety's sake. I really hate measuring the fluid and hope the amount stabilizes quickly, so that she can take the darned thing out soon. I'm really ready to have all this stuff over with-- the surgeries and so on, I mean. I've been pretty shockingly out of it after this surgery...just not remembering much of anything afterwards. Ah, well-- this too shall pass............................
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Fairchild - So glad you did well with the surgery. It really is a cakewalk compared to the mastectomy, but not a nothing surgery. So go easy on yourself - recovery takes a while!
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Fairchild, waiting anxiously with you to get that LAST drain removed!
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Fairchild happy to hear you are doing well! I got my last drain out yesterday and I feel so good! Those drains suck!
I had a check up and my incisions are healing nicely but I did get a small dog ear on my right side.
ugh. Sucks because it's so uncomfortable. surgeon said she tried her best and I believe her because she did a great job on the other side and incisions are symmetrical. I just dont want to have another procedure to correct this so who knows. I'm fairly petite so I wasnt unexpecting the dog ear. How is everyone else doing ?Piksie love the pic!!!
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Beeline, the only reason for Xeloda is that neoadjuvant chemo didn't have complete response. If after surgery path report had shown only fibrosis, this would not be the course. But the report showed that tumor shrunk from around 2.7 to 1.7. The logic is that if there are other stray cancer cells in body that had similar response to TC chemo and got resistant, then Xeloda will take care of it. My oncologist is from MSK. I know it is good hospital and all, but can't stop wondering if I have become earning machine for them. Xeloda is specially prepared in MSK lab for each of their patient needing it. Thankfully insurance is covering it. Have not even picked up yet. Somehow didn't feel like it. Maybe will start from weekend. So how is your migraine after break from tamoxifen? Hope you are feeling better.
Brink, thanks, yeah have the same plan. Go with Xeloda and pray that it will do it's job. As of now don't worry about weight gain. Fo Diep you will need it.
Wanderweg, Xeloda are daily oral chemo pills. 2 weeks on and one off. Hope vacation has rejuvenated you. But must be hard to be back on routine after a wonderful vacation.
Fairchild, glad to hear from you. Praying for quick recovery. Take it easy.
Sunocean, good to know that you too are healing well. Yay for all the drains being out. Everything just feels better after drain removal. Yeah, usually they have stage 2 surgery for correcting dog ears and other aesthetic points. I will have my stage 2 in April.
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It is weird how all the chemo and other pills we take can affect our appetite and sleep and everything. I lost 2 lbs after AC #1, gained back 3 lbs after AC #2, then gained 4 more now after AC #3. It’s good to know all this fat can be put into good use during my DIEP!
I talked to my GYN about the endometrioma on my left ovary and she said surgical ovary removal normally cause more menopausal symptoms than ovarian suppression, and the benefits are the same.
In my case removing one ovary would just mean the other one would take over, so no instant menopause in that sense. But she saw no need for me to save the ovaries if It can up my chances. I’ll see what my MO thinks.
Unfortunately my PS doesn’t want me to touch my ovaries during the DIEP surgery so I’ll consider ovary removal maybe during my phase 2.
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I rang the bell after 33 breast zaps today because I go to another facility for spine and rib. Not quite done, but I cried anyway. 😁 Took them a Starbucks traveler. Here’s to progress!
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Congrats!!!!! So nice to see you smiling - I hope I am after 33 - I'm only at 7!
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Yay, Piksie! One step closer.
Brink - it’s too bad they can’t do both surgeries at once. Let us know what the MO says!
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Sheri - Yay! I wonder how I’m going to be during my last chemo on Monday. I’ll probably cry too... Don’t think they have a bell there for me to ring though, so maybe I’ll just take a picture of me on the chair. Actually maybe somewhere else would be nicer.
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Congrats Piksie! One part completed!
Brink, yay for last chemo! Almost done.
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Hey, everybody, thanks so much for your support! I'm feeling more like myself these days. It does help to have memory functions again. Not remembering a week or so was pretty frightening, so if I ever have surgery again I think I'll make sure someone is with me in case I'm that out of it afterwards. But for now, my sore throat/cough is gone and the incisions seem to be healing fine. I have virtually no drainage so I'm thinking she'll take the drains out on Monday when I see her (the surgeon). Afterwards, I have infusions of Perjeta/Herceptin until September, and then change to some other type of drug. and I will be on Femera for some unknown amount of time, but it doesn't bother me. So it feels like I'm coasting slowly toward completion of treatment, in some weird way. It's unreal....like this whole process seems a bit unreal. To have an illness this scary that I can't feel, with symptoms only from the treatment mechanisms...it seems very strange and not very real. I'm sorry-- I'm not exactly articulate today, but I hope you know what I mean.
I have questions. Many of y'all are in radiation. I know very little about it. Can you educate me a bit? My surgeon said that because I had chosen to have both breasts removed, radiation was not an option for me. She said they use it to shrink or treat cancers in breast tissue that will remain -- like after lumpectomies. Did I understand that correctly? Are there other circumstances in which radiation would be required?
Also-- Are any of you getting further testing done to determine whether you could have mets elsewhere? My insurance denied an early request from my former oncologist for a PET scan. My current oncologist says that's not surprising....they really don't want to pay for testing without symptoms to drive the testing decisions. I did have an MRI of my back just before my BXM because I had severe back pain, but it turned out to be damage from my years of horseback riding. No tumor, thank God. Otherwise, I haven't had testing done. My onc implied we would consider asking for some tests to rule out the possibility of spread, but more recently he's seemed less interested in that. When I asked about it, he ran a couple of tumor marker tests, which are in normal limits, but I really don't know how much those me. He did say if it spread, it would probably go to bones/brain/lungs/liver. This is rather frightening for 2 reasons-- one is that I had primary bone cancer in my 20s, treated successfully back then. The other is that I've lost 4 friends in the last few months to metastactic cancer. So I'm thinking about the possibility more than I should. That's why I'm asking-- have your doctors done any testing to reassure you that nothing is lurking about, waiting to be discovered? Can I rest assured that the blood tests they run every few weeks would pick up liver problems? That basic lung xrays would find a lung met? Surprising how much more I'm worrying now, as I approach the end of treatment.
I think those are my main questions for now-- why radiation and when testing for mets is done. I'm trying to read up on these things, too, but right now, trying to pull myself together after surgery, it's difficult for me to process any more reading material about cancer. I suspect I just don't have the concentration at the moment.
Ah, well. I'll be better off, I think, when I get back to the office and start doing science again. I have a nice set of data on the use of cigarettes by teens with asthma, which will make a lovely article, so writing it up will certainly hold my attention for a while. I hope you are all doing well! Best, Leslie
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