Starting Chemotherapy March 2018
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Becky-Yeah, there are many times I feel like everyone is stabbing in the dark, including oncologists. And maybe in 10 more years they’ll have a whole new set of research and therefore a new regimen. I guess I keep myself sane by knowing that I’m doing all I can with the tools I have now. But it’s clear that much of this cancer thing is still a mystery.
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Hi ladies! Bec-ky, there is so much out there on the internet it can make us all crazy, you are right. But, if you look at the large clinical trials - with many centers, and long-term follow-up, they do show that Tamoxifen has very good results in reducing risk of recurrence in women, and particularly in premenopausal women. If you Google "Trials on Long Term Tamoxifen Treatment," you can see results for several trials, and papers published by the major cancer/oncology journals, which show the benefits.
I do a ton of research myself, and one of the reasons I started on an AI and not tamoxifen is that the most recent trials have shown that postmenopausal women seem to have better results, particularly in the first few years, on an AI rather than on tamoxifen. That doesn't mean Tamoxifen would not benefit, it just means AI for those of us who are already through menopause may be more beneficial in the first few years of hormone therapy. I'm not even a week on Anastrazole (Arimidex) yet, and no SE's so far.
Of course there are potential risks to all the treatments, and we all make personal decisions in weighing the options. But I would recommend reading the clinical trials and published papers, particularly any meta-analyses which compare multiple trials.
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Wildcolonial - thank you!
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Hi All,
so my surgery was on the 30th and now have final path outcome. I am super grateful and in general my outcome was really good. Lymph nodes clear and the cancer that was left was removed with clear margins
. Left over cancer was patches of slow growing HR pos tubular IDC, very low ki67 of 7% compared to 85% before chemo (so chemo worked great in getting rid of the aggressive cancer that had high chance of metastasizing). It also showed a pretty large area of the tumor bed was DCIS. I had a lumpectomy with tissue rearrangement and breast lift and can honestly say my breast looks better than before and was thrilled with the results (I was advised to do this because the PS says he doesn't like to do reconstruction on radiated tissue, since the damage often limits options later). Now here comes the part which is upsetting. My post chemo MRI, mammogram and ultrasound showed a complete response to chemo! And the DCIS was not detected ever on imaging, pre or post chemo although it was high grade and obviously it then turned into the aggressive IDC. I did educate myself about the meaning of complete imaging response and had been warned by my MO that PCR would be rare in my case, so I was not totally disappointed---but the DCIS is really upsetting me because: a) there could be more in that breast b) it could be in the other breast c) The margins for the DCIS were 1.5mm which is apparently fine but not ideal d) I have a family history of breast and ovarian cancer--but all my genetic tests were negative so I was advised to do lumpectomy instead of mastectomy. e) I have very asymmetrical breasts now and I'm told I have to wait up to 1 yr to match non radiated breast so radiation effects can settle (see how much shrinkage there will be).I do not want to go through all this again! So here I am already worrying about a possible recurrence when I should be celebrating the great outcome I had! Also PS mentions how much he hates radiation and what it does every time I see him--- makes me feel like I won't have any good reconstruction options if I have a recurrence in the radiated breast and need a mastectomy. So now I'm back to worrying about the radiation again. Please excuse my whining, I know overall everything is good and I am thankful. Does anyone relate with past experience or have any insight, maybe I'm overreacting? Any thoughts would be appreciated, hope all are having a good weekend.
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Rwns, thanks for replying about depression. We are on the same drug, Arimidex, for about the same number of weeks. I did go talk to the oncology social worker who said that it is very common to start struggling with emotions/ depression at this point in time after treatment. We've been through trauma and need time to heal and process. Ain't nobody got time for that! But I'm working on making the time. I'm just caught off guard, as I expected to feel great and be full of energy now- not the case for me.
I'm also having breast pain that is new and constant. Mammo and ultrasound found nothing, which is great news. I don't know what's causing the pain but it must be some residual healing. The journey continues
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So, anyone else having short term memory issues? I am nearly 4 months post chemo and cannot remember things I was told 30 seconds ago, or even what I was thinking 30 seconds ago sometimes. This was definitely not a problem prior to chemo. Hopefully, it improves, but this is pretty frightening and frustrating.
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Becca - I had major short term memory problems during chemo but they seem to have resolved as my anxiety subsided. I still have issues with concentration. Are you feeling especially anxious these days?
Quick update on me: my path report showed little shrinkage of the tumor at surgery and I had full ALND because there was still cancer on three sentinel nodes. Not the result I had hoped for. I've been recommended PMRT to the chest wall, axilla, and nodes and am trying to decide if the benefit of radiation is worth the risk of lymphedema. And my hair is finally growing back
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I am also having short term memory issues along with problems concentrating, I think with me the two go together--I'm not remembering because I'm just not able to focus as well. My daughter keeps telling me that she literally just told me something minutes ago and now I'm asking her again. I did take many different medications over the last 7 months, including meds for anxiety and percocet---they both effect short term memory. Still recovering from my surgery which again caused considerable new pain (vs what I had with chemo). Therefore I figure as I should soon be on much less medication things will gradually return to normal.
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Hapa I'm so sorry about your path report after sx, you are in a really tough situation facing PMRT after going through so much already. I had a lumpectomy with reconstruction and breast lift and supposed to have rads now but have decided for unilateral mx. After researching and talking to many people about radiation, the potential severe side effects are not worth the risk to me, no matter how small. I know some medical professionals who chose mx for themselves over lx with rads from things they've seen related to rads throughout their medical careers. My PS said its impossible to predict how people react to rads and the tissue damage can occur long after it was performed. Have you looked into proton therapy? It is supposed to be much less damaging than traditional rads, they can control the depth, and it is used in cases where they need to radiate targeted areas like lymph nodes and tumor beds. They can control the depth as compared to traditional rads, so there is not as much risk in damaging deeper tissue, like muscle and especially organs like heart and lungs. I looked into it but wouldn't be a candidate since I would have to do whole breast. I don't know how many facilities there are around the country, but there is one here where I live in San Diego. I'm not sure what area of the country you are in and if you can travel--I think the treatment might be shorter as well. Congrats on your hair! Getting my hair back felt so good
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Short term memory.... Definitely.
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hapa -
Thanks for the info. I am so sorry you have to deal with this. I have seen many others on these boards with similar situations. In some instances, their oncologists thought that estrogen may be driving the tumor growth rather than the HER2. Some tumors are Herceptin resistant but respond well to TDM-1 which seems odd because it is a Herceptin conjugate. There are current trials using TDM-1 for neo adjuvant treatment in early stage because it seems to have less side effects than the Taxane based chemo combos.
I had a bit of lymphedema in my arm after the drains were pulled and it was not pleasant, not at all; however, it was able to resolve with lymphatic massage treatments that redirected lymph drainage. You have to weigh the pros and cons and make the decision you feel is best for you. This disease stinks. Many of the decisions are not easy or straightforward.
mLghtn -
I am having the same exact situations with my daughters and husband. I can sense their frustration with me, but I have zero control over this. Short term memory issues are also mentioned on the Tamoxifen boards, so that may be the culprit. I have been on it for 3 months. IDK though.
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Hi ladies! Becca, definitely also have had issues with memory - but it seems to be slowly improving, and my husband said he has seen a significant improvement (and I have noted he was kind enough to not really point that out all the time when he was apparently having to repeat things OR I was not really listening and he would just mention that he had already said that...). I have always been a compulsive note taker and just got some really nice organizer notebooks - and am using those plus really keeping my online phone calendar updated.
Hapa, sorry to hear that the neoadjuvant treatment didn't seem to do as much as hoped. I can share that I had the full range of rads - breast, chest wall, axilla and nodes, and that was after my January surgery and recon, and then the chemo. I had some issues but made the decision to proceed anyway. I only have had 2 nodes removed so it's not like a full ALND. Whatever you decide, believe what you select is the best choice for you.
2 weeks into Arimidex and still doing fine. I do seem to crave more chocolate but I am not sure I can blame the meds on that....
Wishing all a great weekend!
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For anyone who develops the dreaded itchy measles like rash post chemo (ACT combo) like my mother did after she was done chemo for Stage III: Try getting your oncologist, primary care or dermatologist to prescribe a steroid cream to treat the rash itself so it heals quickly, but more importantly the Zytec 2x a day with Pepcid 2x a day works like a charm. The women on here know what they are talking about and I am thankful I was able to find information here.
My mother's oncologist was rather dismissive of what appeared to be a not so uncommon side effect and recommended to her to see a primary care doctor or dermatologist. Needless to say this did not go over well with me!?!. Hello...this a side effect of your treatment in what is a woman who takes no medications, vitamins or uses any new creams or products. It only took me a hour or so to find many other women who experience this on this forum. We were fortunate to have a great dermatologist who helped with the cream and was able to get it under control within two days after a week of trying to figure it out and it is subsiding. Power to all of being your own best advocate using each others knowledge and experiences. Perhaps the physicians should read this on occasion.
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I honestly got better information here on side effects than I did from my medical team. I think they dismiss some of the less common ones as having nothing to do with the chemotherapy, but here I could always find women who had the same problem. It's also interesting to hear what other peoples' doctors are telling them to do; it was often different than what I had been told.
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Hi Ladies,
I too have experienced some short term memory loss--mostly things that I apparently heard or did during chemo. My biggest problem now is a lack of focus and sometimes a lack of interest in work. I take about a 30 minute walk first thing in the morning and find myself needing to go outside for short walks 2-3 additional times during the day just to try and get something accomplished. I am paid on commission so I have got to get my head back in the game. I think I am a little depressed also, I'm very sensitive and I find myself feeling the urge to hide or escape from normal everyday stress.
Hapa, I am sorry that you did not have a great response to chemo. I was hoping to avoid rads because I was having a mastectomy, but I didn't have complete response either. I had my second-to-last expansion fill yesterday and my PS nurse told me there was a 50/50 chance that my reconstruction that has been going perfectly will fail due to PMRT. According to my research, the failure-rate is a lot lower than that, but it's still something I have to "hope" doesn't happen since I don't really have a choice. This article made some sense to me as to why I had to have rads even though I was node-negative--our young age is a big factor:
https://onlinelibrary.wiley.com/doi/full/10.1111/tbj.12836
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Sidalee...
You hit that on the head. I think I'm am struggling to get back in the groove of work and even though I love my job and have good days everyday... It's just not the same.
I do although have a lot of interest in vacation though... 😂
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Bec-ky, yes! All about vacations and doing stuff, but I'm forgetting that if I don't work I can't afford vacations!
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Good Morning Ladies, I am 12 weeks PFC today
I have appointments with the RO, her Nurse and then my simulation tomorrow...I'm really scared. I've definitely googled too much, read too much, seen too much. I just may have a breakdown or panic attack while I'm there tomorrow, this is actually a lot harder for me mentally than starting chemo was.
Yesterday I saw my MO and then had my HP infusion. My tummy is a bit of a mess today as per normal, but otherwise I'm feeling fine. I ended up seeing the "fellow" instead of my MO and we discussed starting Tamoxifen when radiation was complete. I told him I didn't want it. I explained that I had a uterine ablation 6 years ago that would make the side effects like thickening of the uterine lining a big problem with all of my scar tissue. Not to mention, I'm fairly sure my ovaries have quit on me anyway. He put it in his notes and said we could test to see what my ovaries are up to and chemically shut them down if necessary so I could go on an AI instead. I have my fingers crossed, but my MO seemed like he was going to really push for Tamoxifen so we'll see.
I also had my final expansion yesterday, I am at 400cc and that is definitely plenty. I feel like I am a fuller (higher and much harder) version of my old self now. I will go back to the PS a few weeks after radiation is complete to assess the damage and determine when my exchange could take place and/or other options if my reconstruction gets nuked.
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Hi all! It's been ages since I checked in and it is so good to see you all doing great! I loved seeing the photos with new hair growth! I'm attaching mine taken a couple of weeks ago in La Jolla with my hubby - notice the cute sea lions behind us :-) I didn't love the short hair, but I was surprised to find that I liked it much better than I expected to and was fine with not wearing a hat in public. I've been coloring my hair blonde since I was 20, so I was surprised at how dark my new hair was, but not surprised that loads of gray was sprinkled in! I started my new round of chemo on Aug. 21, so I'm now mostly bald again. I do have a cute new blonde wig that I've gotten lots of complements on.
I'm definitely experiencing bouts of depression. I'm a naturally positive, low anxiety person, but my most recent prognosis has me lingering on thoughts of my future, always worrying about recurrence, and the thought of a terminal diagnosis. I lost a sister and a lifelong friend to cancer when they were the age I am now, and am realizing I could be in the same place in a few years, even with the added treatment I'm going through now. My MO said that I have to stop worrying about it and starting living my life. Except that I'm so tired from treatment. Plus, my hubby, who is a high anxiety sort of guy, just came down with bells palsy! He stresses over everything, and I think my situation is hitting him pretty hard. We've both got to start meditating and getting back to nature!
I'm doing the AC chemo now, and it is definitely worse than the TC. I'm 2 infusions in with 2 more to go, then I'll do 5 weeks of rads, followed by my exchange (oh I can't wait for this - the expanders are so uncomfortable!!), then I'll do 6 months of an oral chemo - not sure which one. After than I'll start hormonal therapy, again not sure which one, for 10 years. Even though treatment will continue past year end, I'm trying to focus on 2019 and putting this terrible year behind me. We haven't taken any vacations this year, so I want to plan something nice for next year. We usually just try to get away for weekends, or visits with our daughter or other family, so a real vacation will be nice.
Stay well everyone and keep your spirits up! This is a sucky journey and it helps so much to have others commiserate or celebrate with!
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Sidalee I am sorry you are so scared about your upcoming rads tx, but I totally get it ---feeling the same way myself after researching too much about it. I almost felt like I got through aggressive chemo (with risks of leukemia and heart failure) and am ok, but now I really don't want to subject my body to another terrible tx that could negatively affect my health in any way. On at the other hand, most people say its no big deal after getting through chemo, and although the long term side effects can be serious my MO And BS keep saying its rare and not worth compromising ca tx. I was so afraid of rads that I now wanted mx instead of lx. All my drs are now saying this would be a really bad decision in my case (high risk for complication in mx since I just had oncoplastic sx ), and they are reassuring me that these days the radiation is much better. Be sure to tell your RO and her nurse how you feel tomorrow so you can get additional support. Hang in there, all of this is so hard.
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Sidalee - I also spent too many days googling everything and freaking myself out. Literally was crying in fear of the unknown... I started to feel like I was dying. I was so scared of T and all the things I read just freaked me out more. "the truth about cancer" website did not help matters. But now I've come to my senses more and I'm just going to live my life!! I'm gonna do whatever the hell I want... Im 40 and although I'm very young... I've been blessed to live this long, I have 2 wonderful girls and I just need to be grateful. I can't spend any more time freaking out cuz it's just not good for me.
Kinda funny because my ex husband once said to me.... After I told him YEARS AGO.. that if I ever found out I was dying I'd be freaking out constantly... Idk how I'd handle it. And he says... "Really?? You're gonna make everyone's life miserable around you cuz you're gonna freak out like that?!" It was SOOO insensitive, and I always thought of that when we were splitting up. I just thought... Omg if I'm ever dying, I DO NOT WANT HIM WITH ME! Cuz I'll be freaking out and scared and he'll just be irritated and annoyed with me!! He'll never be comforting.
And fast forward to now I'm remarried to the most supportive caring husband who's life goal is to take care of me. He is sooo sweet and attentive and I can't imagine anyone else.
But!!
I'm not dying. I'm living. And I'm gonna live it up as long as I can!!
Keep your chin up! Xoxo
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Happy Friday, ladies! Marla, great photo at the beach, and sending positive vibes your way! Hopefully this next round of treatment does the trick. It really is hard to stay positive all the time. Even though I'm now onto the Arimidex, sometimes my mind still starts to wonder, and I have to step back and remember what most of us are saying (go Bec-ky!) - get on with living! You got this!
Sidalee, rads is scary but hopefully you'll be blessed with a great tech team - and truly they become friendly faces on a daily basis. Follow the skin care protocols you research - I sound like a broken record but get calendula oil, my girls cream and pure aloe and use it all. Mix Lavender oil and hemp seed oil into a base cream and slather that on too. I was 32 treatments, 25 regular and 7 boosts, and after the boosts I did really burn, and my skin broke open in several places. But now 6 weeks later it's all healed, and so far (and I know it's far too early in my post rads timeline to celebrate), my reconstruction is holding up really well. I am still using calendula and my girls twice a day. (Upside - I always spread it across to the other breast and all this oiling up has reduced those age lines on my chest.)
I find planning vacations is the absolute best therapy. May not materialize until next year, but having it to look forward to is great. And the short weekends are super while in treatment. The other day my husband and I went over our "mini-vacas" and starting in March mid-chemo we did 2 overnights, two 2-night stays, and one 3-day weekend. OK, these were all pretty local, not to glamorous places, but they were "away," and it really helped. And then we did the big, once cancelled, once delayed cruise, and that was heaven.
So now yes, back to work (focus and lots and lots of reminders online and in my to-do book), but the lure of "where do we go next year?" is always out there when I need a little mental break. That reminds me - if anyone wants a nice escape movie, the Ben Stiller "Secret Life of Walter Mitty" is great.
Hugs and support to all!!!
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Sid - I'm sorry to hear about your issues. I'm losing my shit over here too. I'm seriously considering not doing the radiation because I think it has a higher chance of ruining my life than saving it. I'm not happy with my reconstruction and I think fixing it after rads is just a no-go due to the likelihood of lymphedema. My simulation is next week. I won't start rads until two months after surgery at least because I want to see how these implants settle in. My PS didn't do it the way pretty much every other PS in America does (she didn't use alloderm) and I think they're going to look like crap once all the swelling is gone. She also put in two different sized implants and of course now they look lopsided. I think I'm just going to cancel the simulation. I don't know how long you can wait to do rads until its pointless, but I may not agree to it for another 2-3 months.
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Marla, I’m sorry about your most recent prognosis, it’s frustrating and depressingwhen people tell you to live your life while you’re in tx with many limitations! Just want to say I had a very aggressive HR+ ca and AC got rid of it, just some very slow growing left (taken out at sx). It was pretty rough, didn’t want to go back for the 4th and tbh it was the worst. BUT I did bounce back VERY fast—like 2-3 weeks, feels like a distant memory now whereas I’m still feeling effects of the taxane drugs . Sending positive energy your way..
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Marla Losing your hair 2x sucks but my hair started growing soon after ac (during taxol/abraxane). I'm having fun with my wigs although I have an inch of hair and people can't tell they r wigs. On a funny note—-guy working at my house saw me without my wig and said “why did u cut your hair, I loved that hairstyle (wig) you had before” . He knew I had chemo but didn’t think I lost my hair!I told him and laughed so hard!🤣🤣🤣
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Hi all, for whatever it’s worth, I had 5 weeks rad followed by 5 boosts and had nothing more than a mild sunburn. I used miaderm cream. I was afraid being light skinned would make it harder, but my RO said skin tone has nothing to do with how you’ll react. I know rad can take time to show effects, but I finished almost 8 weeks ago and there is no sign of having had rad appearance wise
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Thanks for the tips and encouraging words mLghtn, Wild, Rwns and Bec-ky, it really helps coming from those who have been through it.
Hapa, I'm really surprised that your PS didn't use Aloderm, how frustrating! Are your implants pre-pec?
I still have a lot of doubts about radiation, but I guess I'm going to proceed anyway. I was very worked up by the time I got to my appointment on Friday and after 15 minutes of aggressively questioning the resident on why this was necessary she told me in a snotty way that I didn't have to do it if I didn't want to. Um, who the f@$* in their right mind WANTS TO DO THIS??? So, I told her we were done talking and I wanted her to get my doctor. After another 20 minutes of back-and-forth she has convinced me I guess. I still feel like there is a 50% chance that I will regret not doing it and a 50% chance I will regret doing it, but she says my personal recurrence rate is 30% due to an initially large tumor, incomplete response to chemo and my young age and she says it will be less than 10% after radiation so there you go. I managed to make it to the car before having a major meltdown in the parking lot.
I am scheduled to start on 10/1 and go for 5 weeks. I am going to have the opportunity to try a new treatment that has had good results at the Mayo in Rochester and is now being tested at our Mayo here called Mepitel Film. According to one study, the film reduced overall skin reaction severity by 92% https://www.ncbi.nlm.nih.gov/pubmed/24486117 . My doctor wants to see what happens with both my skin and the tissue expander if I wear the film throughout my treatment. I've also agreed to take part in a study that will collect my DNA and follow my skin-reactions to see if there is a correlation between the two since skin color does not necessarily determine how different people respond to radiation.
In the meantime I have also purchased a couple of bottles of Miaderm and I am attempting to face this with the same brave attitude I have faced all of the other treatments that have come at me so fast these past 8 months. Thinking of all of you!
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Happy Monday1 Had to share a short term memory story. I have a lot of business travel this fall, and so this afternoon was making airline reservations for some of the upcoming meetings I have to go to. I had been talking to a colleague about her itinerary to Chicago middle of next month and so went online and got my tickets. And as I was filing the itinerary, I saw there already was an itinerary to Chicago for me in that email folder. For the EXACT SAME ITINERARY. And I had literally no memory of making the first one.
And a very nice representative at the airline was kind enough to cancel it straightaway. Of course, she could see the first reservation in my profile...
Oh my, time for another organizer, I guess!
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Wildcolonialgirl
Whew! You are not alone. I am doing all kinds of wonky stuff with my short term memory loss. Thanks for sharing. I am so glad that the airline rep was understanding. I just hope that this improves sooner rather than later, because there is no telling what I am going to forget next.
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Sidalee... It is very frustrating when you have doubts about treatment...and you don't get the answers you're looking for. I can assure you they are doing the best they can, with what we know at this point in time.
Unfortunately there's no sure way to know if we are doing this and it will cause problems later or not... It's just the risk we take and it sucks.
I get it.
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