Starting Chemo July 2019
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Hello 2019,
NCI = National Cancer Institute. After I completed chemotherapy, I decided to transfer my care to an NCI due to having an ATM mutation that requires enhanced screening of my pancreas, ovaries/uterus and colon. My original treatment facility didn't have these screening programs. Upon my initial consult with my new breast surgeon, which I assumed would be a quick intro and six month follow-up, imagine my surprise when she said I had most of my breast tissue remaining and another BMX was in order. It was a hard pill to swallow, but I went ahead with the surgery and sooooo glad I did! There was over three pounds of breast tissue removed. It was a real eye-opener in the difference in standards of care between a community-based treatment center and an NCI
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Ah gotcha yes a real hard pill to swallow. I bet you were kinda mad! My surgeon took as much tissue has possible, that being said as I'm sure you know we still have to do exams on ourselves because they can't get every last bit of breast tissue out. I saw some lovely pictures of women who has amazing tattoo cover ups after BMX and I can't even imagine how much it would hurt I feel like I have very very very little padding left. ( I didn't do reconstruction) I'm glad you found a great center for your care!
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Wheat: Welcome to the group! You can post here as often as you like about anything. Chances are you’ll find someone with the same questions and/or uncertainties about each phase of treatment. Glad you found a good medical care team!
Fairydragonfly I started using a prescription strength antiperspirant a year and half before diagnosis and just can't get it out of my head that it had something to do with it. 🙁 From my research, Scientists can't find evidence of anything definitely causing breast cancer. I wouldn’t be surprised if next week there’s been a study saying Toms and Crystal deodorant MAY cause bc, right? Lol. I'm praying the few uncertainties I still have go away soon.
Again I want to say feedback from this group is amazing! I really appreciate you all. 🙏💜
Update on rads:I’m hanging in there. Driving to treatment every day is hard. I’m a busy single mom and work full time so just going back and forth is added stress. Im dealing the best I can. 😊
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Happy Sunday everyone. What good things are you doing for yourselves this week. I just signed up to get a free book to review. I like to read and I read a lot of mysteries so this should be fun. I also signed up for a class at Gilda's Club , it's a 2 hour class about the power of humor so I guess we will write some stories that draw on humor and cancer. So hopefully posting here will help me actually go, sometimes I have good intentions of doing things but when it comes time to do it I decide I'd rather stay home. But before that - I need to get thru surgery this week. I really hope the doctor can give me some sort of news after it is done or I'm just going to be such a mess until the pathology comes back! And this is for a preventative surgery! OY.
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2019, good luck with your surgery this week. I know waiting for pathology will be hard but hopefully your new endeavors will keep your mind off of the waiting part.
Welcome wheatscapes, it’s never too late to join this wise group of women. I hope you learn as much from them as I have. I can’t imagine have two BMX surgeries I’m sure you are happy that is all behind you. May I ask, did you, when you had your 2nd BMX, did you get a clean bill of health? I had TCPH before my BMX and since I still had some residual cancer and I’m triple positive I am now on Kadcyla for 14 cycles.
Melmax, I’m hopefully starting rads this week and the time chunk it takes out of my day is one part I’m definitely dreading, along with all the other obvious pains involved.
Stay strong 💪
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2019 - I have seen pictures of the beautiful tattoos for BMX recipients. I'm considering one, but first I am going to go through nip reconstruction and areola tattooing and see how I like the results. Yes, I was more than a bit miffed that the first surgeon left me at high risk and needing a second surgery, as was my husband, but mostly just grateful I found out that I was still at high risk for recurrence and rectified that risk down to what it was supposed to be post-BMX. Funny how cancer is like that: on one hand it sucks and there's anger and fear and self-pity. On the other hand is gratitude that one is still alive. So many conflicting feelings. Still though, it set me back about four months on my recovery timeline. I have fat grafting and nip recon surgery this Thursday which should've been done last November. Good luck on your surgery this week.
Melmax - Thanks for the warm welcome. I look forward to getting to know all the brave, wise women on this thread.
Flnana - I did indeed receive a clean bill of health after my 2nd BMX. My chest area was screened extensively prior to the second BMX by a very accomplished radiologist via ultrasound, result NED, and the path report on the residual breast tissue that was removed came back clean. My original diagnosis was and still is Stage 1A, clean margins and node negative after first surgery. I was required to do chemo because my cancer was HER2+, and the BMX was due to a mutated ATM gene. No Kadcya for me, just Taxol and Herceptin.
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2019, How did your surgery go?? I hope you are recovering well. I'm heading towards the same surgery in the next few months so let me know.
I've had a frustrating week with my radiation oncologist but I think we finally have things worked out and I'll be starting that next week. It took her over two weeks to get my plan together because she said it was "complicated" I'm not sure what was complicated about it but glad it is finally done and I can start...not that I'm looking forward to it but I can't finish what I don't start!! My Kadcyla infusions are going well....so much easier than the TCPH AND, my hair is finally starting to grow in on my head. Now here's something weird...that's the only place it's growing so far. I know some of you have talked about how your hair has grown in all the places you would prefer it not to grow but so far that hasn't been the case for me...and I'm fine with that!!!
I hope everyone has a restful and fun weekend. Stay strong!
Julie
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Finana2
Thanks for asking! There was a big mix up and when I got to one day surgery I was told my surgery was canceled. I had done a colon prep the day before and hadnt had any food in nearly 24 hours and I was quite upset. My hubs said hes never seen me so angry. I was really hangry and stressed out. As you can imagine--I had been preparing myself for the surgery mentally for 2 months- worrying could I have another cancer ? - Anyway thank goodness it got straightened out and I had my surgery! This AM I go my path results and there was NO CANCER ! My ovaries/tubes are gone and my uterine walls were scrapped and they are good So me and my empty uterus are very happy. I'm sore but it is so good knowing that my pathology was benign!
On 3/1 I start taking Femera (i think that is what it is) I havent had a period since my 2nd AC treatment so I have already been enjoying menopause. knock on wood. not too bad for me. hot flashes at night but when I had periods they really sucked and I had a lot of headaches and bloating and whatnot and now that is all gone.
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2019 - Wow! I am so glad they were able to get your surgery done yesterday! I would have been angry, too. Surgery is so stressful and with the colon prep and not eating I bet you where rattled. Fantastic news about your path reports being negative!
I survived my surgery experience yesterday as well. I was supposed to have surgery at 2pm and they didn’t get me in the ER until 5pm so I was hangry, also. It got off on a bad foot when they couldn’t start an IV (again - this happened my first surgery at this hospital). The nurse was getting ready for a second go at it and my husband requested someone else. They sent the VAT team complete with ultrasound machine to locate a vein. I’m really not that difficult of a stick. I didn’t get home until 10:30 pm.
Pain was and remains minimal and I think I will switch to Tylenol tomorrow. It is already evident that I will need another fat grafting surgery. Bummer. Oh well, gotta roll with the punches.
Hope everyone has a great weekend. I am using this down time to plan some projects on my loom. I just finished weaving a cashmere scarf for myself Wednesday as a consolation prize for having surgery. Next project will be a table runner with some muted spring colors. Hope it turn out pretty
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I am sorry so many are needing more surgeries!
FLnana: Best of luck with rads! I just finished this week, and start Kadcyla next week. Lucky you that your hair is only growing on your head
.I have packed away my wigs for now. I think my hair is long enough that it looks like a dramatic cut rather than obvious chemo results. At least I have convinced myself of that.
I have "fired" my oncology team, which is really tough because they were great, but the cancer center itself was so stressful because of noise and a total lack of privacy (seriously -- who on earth thought it was a good idea to design it so a major connecting hallway from the hospital to the outpatient clinics runs right through the middle of the oncology waiting room!? And with a glass wall open to two other major hallways!) I start with the new oncologist this coming week for my first Kadcyla. Wish me luck! It feels a bit like jumping from one lifeboat to another in the middle of a hurricane, and I have been an emotional wreck over it.
I hope everyone has a great weekend!
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Good morning! Checking in to see how y’all are all doing. I’m doing good. Had good follow up with MO and PS. Will have 2nd surgery for touch ups 4/9 fat grating and adding lil more to my left breast. As a whole I think everything turned out great. Even my MO said it was one of the best jobs he had ever seen. I can’t say it enough that I’m so happy and DONT regret any decision I’ve made yet. Well except chemo 🤬 I had been doing really good mentally until Friday when I was told I had the HPV virus, which scares the crap out of me for cervical cancer. So I had a hard hard weekend in my head. But again what can you do? Absolutely nothing.
I wish we could start a list and put out of things to do or not do, tips and tricks. Kinda like that pdf I found of things to get to prepare for chemo. I think it would be so helpful to women that have just been diagnosed and are weeding through all the info. I think my 1st would be DONT DO THE MINIMUM LUMPECTOMY, DO THE BMX AND DO NOT CHOSE IMMEDIATE RECONSTRUCTION. I told my MO the other day I can’t believe women do the minimum then run the risk to go through it again. I couldn’t imagine doing this a second time. He even acted like I was crazy for choosing a BMX and I thought naw I’m thankful I have a strong mind and I was able to think clear and tell the BS what I wanted. I am also thankful I waited on reconstruction to give me time to heal. I’ve seen another friend that did both and hasn’t turned out well either 😩 That’s just my opinion.
Wheatscapes I don’t think I ever said welcome and I’m glad you are here, I’m sorry WELCOME TO OUR GROUP! I think we have a awesome group of women and I enjoy talking to them and sharing my journey with them!
Well I hope you have a great day, talk to you soon!
Oh forgot to mention before, I know I mentioned about a private fb group and it was mentioned again a lil while ago. If you want I can set up at page if that is easier for us to communicate 🤷🏼♀️ Just let me know.
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britgirls, divergent, deanders, rubydream, yeslamadragon, fairydragonfly I hope you are doing well!
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Hi all. I think my best update would be to say I am coping. Physically, I am healing well from my double mastectomy. I start physiotherapy tomorrow. Mentally, I am not in the best state of mind. All I want to do is sleep/stay in bed.
I finally met with the GI specialist to discuss pancreatic cancer screening. He's also concerned about my low ferritin levels I have had for over a year now. So lucky me will be having an endoscopy, colonoscopy, and MRI.
I am also continuing to struggle with losing weight, though I am working with a doctor on it. If I can't lose the weight, the gynecologist won't be able to perform the surgery lapascropically.
I am just tired.
I hope everyone else is doing well. ❤️
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Fairy dragon , fwiw according to my research your risk of pancreatic cancer isn’t much unless pancreatic cancer itself is prevalent in your family tree.
be gentle to yourself .
When I was looking to lose weight I found success using the Noom app because it focuses on Why you eat what you eat and not just counting calories.
Keep us posted xoxo
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for a Facebook group I’m on FB as Victoria Hamel
:-)
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My mother had pancreatic cancer and my BRCA1 mutation puts me at a slightly elevated risk compared to the general public.
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gotcha. I hope the tests go easy and comeback with great results
Big hugs
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ok I created a closed group for fb and I named it Behind the Pink. I made it closed so it's private to us. You can search fb for Behind the Pink and request to join. Here is what the group page looks like.
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jjpope, I sent a request to you to join the fb page. Let me know if that worked because I didn’t friend you personally first.
Julie
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flnana2 got you approved
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please make sure you let me know if you request to join so I know who it is. Just want to make sure it’s us and not a stranger that just asks to join.
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Hi all.
I had my first Kadcyla yesterday, seem to be doing well so far. A bit queasy this evening but otherwise ok. Just a long road.
I am a bit hesitant to join the Facebook group just because I don't really trust Facebook privacy protections. Yet I want to to stay in touch. hmmmm....
jjpope: I think the message is "do what is right for you". I chose lumpectomy and am happy with the choice (of course I had a positive node so would have had radiation anyways, but I still would have chosen lumpectomy). I did have genetic testing today, so if it shows a high risk of another breast cancer I may consider double mastectomy, but I know myself and I still won't second guess my initial choice.
Fairydragonfly: Best of luck with the additional testing. I have had a colonoscopy and while there is nothing fun about the prep, the colo itself was a very nice nap! Unfortunately, I lost most of the weight I gained during chemo during the last weeks of radiation because it was so hard to swallow. I do not recommend that as a weight loss plan! Best of luck with that as well.
eta: My infusion was with my new team. My first meeting with the oncologist the first question she asked (and what we talked about most of the visit) was my emotional state. She doesn't want to start me on hormonal therapy until I am on a bit more even keel and was very reassuring about the delay. So that was great! And the rest of the team were great, and the space cozy and private.
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yeslamadragon
Wow! That sounds like a good doctor! Mine has never bothered with the emotional issues. Didn’t really say anything except “I’m writing a prescription for AI. Don’t start until you finish radiation. Don’t stop taking it. If you have side effects, call the office and we’ll make adjustments.” Blah blah blah.....didn’t really elaborate on what the side effects might be. Pretty cut and dry conversation that lasted all of 3 minutes.
Speaking of emotional issues, the past 30 minutes or so I’ve been feeling down. Reading about others who have done the same treatments I have, starting with a better prognosis than mine, and a year later get metastasis. Ugh. I’m ona roller coaster.
I know there’s no guarantee, it’s a crap shoot, and I’m doing the best I can but it really pisses me off. Done ranting. Thanks for listening.
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melmax I def understand the fear and anger! My MO did make me feel better the last time I went. He said it was def normal to panic over everything and it would last a couple of years. He said after that you’ll feel a lot better and not think about it all the time. I go back and forth. One day or week I’ll be good and not worry over it, then the next it hits me like a freight train.
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melmax
When I come to this website I go on this thread and the thread that posts new research developments and now a new thread that shares ways to advocate for BC people . when I go into too many threads I cause myself to panic.
Now as far as side effects I remind myself that for the most part people are more likely to come here to complain about side effects they are dealing with than to post that they didn’t have problematic side effects because that is human natural and we all have to remember every body is different .
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Thanks for the support ladies. 💜 This usually happens at least once a month for me. The anger over the uncertainty. I get pissed at the billions of dollars spent and there’s no cure. It definitely doesn’t help that I read so many posts so I’m not going to do that anymore.
I’d like to end this post on a brighter note. Friday will be my last boost. Three more days, then no more radiation. 🙌
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awesome news Melmax
2019whatayear what new thread are you looking at? I would like to see it.
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thanks jjpope1
And great thread! 2019whatayear
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Hello Ladies! So sorry I haven't posted for a little while. JJpope1 - thanks for thinking of me (and others).
I have been somewhat in the same position as fairydragonfly - the emotional aspect of this has finally caught up with me. I have been a crying blubbery mess since the second week of January. It doesn't seem to take much to get me to tear up or even start full on ugly crying. And of course I spend a great deal of time trying to figure out why. And when people look at me and say "You've been through so much, be gentle on yourself" I can't help but think I'm not the only one going through this - there's tons of people battling way worse than what I am. But they aren't me.
I also have thought that maybe I am struggling because of the unstable aspect of my MO. (Reminder: 1st MO was really matter of fact and then left for a new job; assigned "interim" MO until they could replace leaving MO; assigned 3rd MO, who I am not scheduled to meet until my 3 month check in). I think that is part of it - if I don't trust the care I am receiving then how am I to have faith that my outcome will be good? But then I come here and read your guys (and other) threads and realize that irregardless of what MO I am seeing, the treatment plan itself has been Standard of Care (meaning that all our basic path has been similar).
SO after much introspection (and seeing a new therapist) I have come to this conclusion:
None of them know shit - they are all guessing based on averages and statistics, clinical experience and blind luck. None of them will reassure us to the level that we need, none of them will tell us we're "cured", none of them will take our health as seriously as we do ourselves. And as I spend my time running from one appointment to the next, waiting anxiously too see whoever it is and then feeling like I always forgot to ask something or forgot to focus well enough on what was being said - something else occurred to me. I can spend my time living in fear or I can trust in the fact that I am just one of twenty people my MO will see today - it's the OTHER hours in the day that matter. Regardless of my outcome I have to see it to the end - I am in this body forever and no amount of appointments will change that. I will do everything in my power to keep this body humming along as long as possible but I don't want to spend my days ugly crying.
I went and got a tattoo that for me sums this journey up. I won't get the color added for a couple of weeks because the tattoo artist wanted to make sure that I wouldn't have an adverse reaction to the ink (especially since I've been through treatment). During one of my many crying panic outbursts - I stood in the middle of my kitchen, gripped by fear and worry - tears streaming down my face and I yelled this word to the sky:
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