Chemo Starting September 2018
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sunocean - Good for you on focusing on enjoying the time you felt well. I’m sure you needed that in between the chemo and surgery. With my BMX, I had four drains. Two came out at 10 days and the second two at 17 days. Felt like forever! But it will be a huge relief when they do come out. Healing from a mastectomy is rough - sending good thoughts your way
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JNKK and sunocean, so nice to see you pop up again! sunocean, hope you are recovering well. I cried the first time I saw my no recon umx scar without bandages but got used to it quite quickly after that.
I love everyone's pictures of their hair and all the holiday plans. Costs Rica sounds fantastic!
I had my 6 month follow up with the breast specialist, and it was surprisingly good. I didn't even mind hearing my good breast described as "that tiny little thing" because she also appended the word healthy! I'm not sure I'm entirely on board with the follow up imaging plan, but I know my MO wants MRIs, so I figure I'll let them battle it out and worry later. I am 10 days into tamoxifen and so far it's not terrible. I'm hoping the daily migraines subside, but I have lots of painkillers leftover from everything else so will ride it out for now. Rads start next week at the very unhelpful time of 3:30 in the afternoon. I've been feeling really good post chemo, so hoping I don't take too much of a hit with rads.
Here's a picture of me from this weekend -- was trying to get one good enough to use as a headshot for work. I have full coverage now but it's hard to see because my hair persists in being about 75% white!!
Hope everyone is hanging in there x
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I am loving everyone's pictures!
I am 5 days post surgery and doing pretty well. I havent had to take any pain medicine since Saturday. Drains are a pain in the ass. Ugh. Baby steps for sure..
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beeline - I think your white hair looks cute. Were you fair haired before chemo? That tiny little thing. I don't know how I feel about that! I hope the migraines settle down - I used to have them regularly but none since chemo. I'm 11 weeks into tamoxifen now and doing okay with it.
sunocean - The drains are the worst! I had to look away when my husband flushed them. I hope yours come out soon and you heal up quickly.
I went to a wellness workout at the cancer support center here. It was really nice to be with a bunch of women who had been through something similar. But I found out how much the months of inactivity affected me!
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JNKK - I get what you mean. At this point I just do the best I can with my loved ones and not assume I am in control of how much time I have. An acquaintance did mention that his MIL became a much more positive person after her cancer ordeal, cherishing all the moments with her family. It has been 15 years and she's still doing great. I suppose this is one way we can deal with our uncertainties.
Sunocean - Congrats on finishing your surgery!
Tigerlily318 - Today while I was going in to get AC #2 I overheard 2 women talking about how their 1st Zometa was the hardest, but then after that all subsequent ones were fine. Are you still going with Zometa?
Beeline - Your picture looks wonderful!! Are you staying with the “star" MO? I met both my MO and her mentor MO and definitely the mentor was much more confident and up-to-date about the latest research. I do like my MO but sometimes I do make sure she checks with her mentor on treatment decisions. Thankfully both of them are very nice with no ego issues.
Piksie - Now I just have 2 more ACs left! On travel, believe it or not one of my favorite places to go in the US is San Diego. I love animals and have been to the wild animal park twice already. I might go again when my daughter is a bit older...
So today I went in for AC #2. Now that I know the nausea will lift after day 7 it helps a lot. I got acupuncture today too so hope it will help. During the infusion I put 2 ice packs on my head hoping to preserve whatever hair I have, we'll see...
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Wow, loved the pics! Brink and wanderweg, both of you have great growth and dark hair. Piksie, looking very sweet, I liked those earrings. Beeline, you have such contagious lovely smile. Has your hair color changed due to treatment? I definitely feel I have got more white after the treatment. Mine are thin, could be letrozole effect. My hair had started to thin out from last few years. Was wishing that regrowth would be better. But alas! Anyways, gotta be happy for the growth. Don't know what will happen if I have to take chemo pills!
Jnkk, I so relate to those thoughts. I too hope that I will get to see my 7 year old grow, graduate, get married and life will be kind to let me play with my grandkids. Is it too much to ask at 40? Only time will tell.
Few things I have tried to change. I too focus on eating fruits, veggies, protein. I have been vegetarian all my life. So not sure what else should I do. I used to eat bread or biscuits with morning tea. Now stopped that, also gave up sugar. I don't like tea without sugar, but trying my best to avoid sugar. I'm also trying intermittent fasting as wanderweg informed. But I get very hungry by 10.30/11. Currently as I'm home, can make smoothie, omelette etc for breakfast. But was wondering what will I do after starting work. What are you ladies having for breakfast? Wanderweg, what do you have after intermittent fasting? I can think of only fruits and nuts as options then.
First time posting a pic. Hope it goes through. My hair growth -
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Greetings from Florida! Way better than Hawaii!
Beeline, you look great! Love your glasses!
Sunocean! Good to hear from you and each day is a day closer to no drains.
And Brink...thanks for the overhear. I had read that too and plan to stay with the Zometa. I have my next Lupron shot the end of next week so will discuss with them. I have faith that Mass General will figure it out. Hope you are feeling ok, at least halfway with AC?
BeingPositive, on breakfast, Daily Harvest has been a godsend. I order their overnight oats and chia and smoothies and they got me through chemo and now are great for work. I add pea protein and collagen to the smoothies. The stuff is frozen so no waste. If anyone is interest and trusts me you can PM your email and I can send a coupon. I also do avocado or almond butter toast. Works in the car on a commute.
Have a good day all
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Hi everyone, happy Friday from New Zealand! Thanks for all the kind words about my hair. I was blonde as a kid and probably dark blonde with a lot of grey before all this, but I had dyed my hair for so many years it's hard to say what the real colour was. Definitely not white though!
Sunocean - I'm impressed that you're already ok without painkillers. Hope you continue to heal well!
Brink - I haven't made up my mind on the "star" MO. Like with yours and the mentor MO, he was really confident and up to date on everything. I feel like I would be in good hands if I were to get a recurrence, even if we're not a great personality fit. That said, my breast specialist described him as one of her favorite people, so maybe he will grow on me. I have to stick with him for now anyway to be in the abemaciclib trial. If I don't get the drug I will reconsider my options. Hope AC #2 isn't too rough on you. At least you are halfway done!
Tigerlily - so glad to hear you are able to enjoy Florida after the Hawaii debacle!
Being - your hair looks great and I'm so impressed with your healthy eating! I am pretty healthy, but far from perfect. I was a vegetarian for 15 years, but in the past few years started having chicken about once a week and red meat maybe once a month, maybe not quite that often. Luckily I really like vegetables. I was thinking I probably eat broccoli nearly every day, not that it helped prevent BC! That said, I still eat sugar (tea with milk and a bit of sugar is a favourite) and drink wine. I have cut back on wine quite a bit, though to be honest not one of my oncologists or specialists has had an issue with my previous 10-ish glasses per week. Weird how the recommendations are different not just doctor to doctor, but country to country. Exercise is the thing I think I really need to get some good routines going on.
Wanderweg - great to hear the wellness workout was good. There is a similar-sounding program here for after all active treatment is done that I was thinking about trying out. I feel like I could particularly use some help getting back to strength training. On another note, I have been thinking about your post in the August thread about the anti-chemo sentiment other places on the board (I'm not stalking you, I promise! just got in the habit of reading the August thread to see what was up ahead
I wonder if that sentiment is what has kept me from really joining other threads. You see it with hormone therapy, too. I think everyone has the right to their own decisions, but there is this weird sense that those of us choosing all the standard interventions are somehow giving in to the medical establishment and big pharma. And while I have a healthy distrust for authority and think both of those establishments need to do much better by BC patients, I also think I am making the best choices I can based on the available treatments -- and like all of us, just trying to save my life! 0 -
hello all!Kudos to all of you hair-sharers-mine is coming along and is quite longish (what is there is probably .75 of an inch) but also sooooo thin. It's terribly awkward and I can't stand it-it stands straight up-the color is my usual mousey blonde/brown-I hope to be confident enough to share ASAP ! 😫
We are currently in a Mexico vacationing. I was approached by an ovarian cancer survivor bc my headscarf gave me away. It was strangely lovely to talk to someone whilst painting pottery at a resort. Sometimes I think I have depended on this as my only outlet to talk the c-word-perhaps I need more personal interactions? Makes me doubly thankful for you all ❤️
Yesterday we visited Tulum, climbed the tallest Mayan pyramid on the Yucatán peninsula, and Chris and I jumped off a 15 foot platform into a cenote (a freshwater cave pool). My body aches from the exertion. I may feel physically weak. I may not be particularly fond of heights. I may have panicked when my headwrap fell off after I jumped and strangers saw my bald head, but I did all of the things yesterday and I feel quite accomplished-attached are 2 pics from Coba-from the bottom To the top.
I'm so thankful for you all-I look forward to posting with a real keyboard and not my phone!
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Brink - How may rounds of AC do you have ahead of you?
Being - You have a nice bunch of dark hair yourself! And thicker than mine. My hair was a lighter brown before chemo with a fair amount of gray, so definitely a color change. I've cut sugars and simple carbs mostly out. And upped veggies, especially cruciferous vegetables. But honestly, I'm skeptical about what difference it will make since I had a pretty decent diet before. Still, I'm doing it. I usually eat "breakfast" at 11:15, just because that's the first opportunity for me later in the morning. Most days it's oatmeal with nuts and dried fruit and flax. Eggs and vegetables on the weekends. I drink my coffee black and as long as I have it in the morning, I don't really get hungry before then. Could you make a smoothie and take it to work with you?
Tigerlily - So glad the Florida trip is going better than Hawaii. I'm going to be in FL myself at the end of next week. Can't wait!
beeline - Oh, no worries! I am on both the August and September threads because my chemo started August 31st. I guess it makes sense that on the chemo thread we're all going to be on board with conventional science-based treatment. But it has been odd to encounter hostility about it. Because exactly - we're just doing what we can to live. As for hair - I have a friend who had light brown hair and when hers came back in, it was white at first then white and gray, then gray, and then brown. So you never know. I think my diet is extremely healthy, but I still have a glass of wine most nights. Or the occasional IPA or whiskey.
KK - Oh, good for you! You look like you're having a blast! I went to Tulum a million years ago on my honeymoon (in my first marriage). It's quite a climb.
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wanderweg - I just have 2 more ACs left! Hair started shedding today and hoping they won't all fall out... though I did lose almost everything on Taxol so probably wouldn't count on it. Also hot flashes are making a comeback... at least they’re mild for now.
So good to hear about everyone's travel plans! The earliest I can travel will probably be in the summer, after ACs and my DIEP surgery. Please post pictures and travel tips!
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Newfromny, I hope you get this message! I'm sorry I've been off-site for a while...busy at work and had some medical complications. Re the nausea/vomiting...my ONC put me on Sancuso Patches. You wear them on your arm, so there's nothing to swallow and they were the ONLY thing that controlled the vomiting! Still, I've lost 40 lbs since I started chemo on Sept! (Of course, I had the extra 40 lbs to lose!)
Warning: The Sancuso is wildlly expensive...about $750 per patch. One patch lasts a week. Fortunately, my insurance paid for all of it! I sure hope this helps!
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Love all of the pictures that were posted on here, whether is hair or travel!
My hair is growing longer but it is quite gray. I had some gray hair before cancer but never was this gray before.
I went to see my RO two weeks ago, she told me that my breast being swollen is normal and will probably go back to the size before. I am going to have yet another ultrasound. This time was ordered by my RO. The mammogram result was inclusive due to the dense breast, so I will be going back again next week. I am praying that I am A-O-K.
Here is a cray idea... How about we get in contact via facebook? I don't post much but I do get on FB to keep up with others. If you are interested in doing so, please add me. Judy Malinowski. My profile picture is with two kids in their cold weather clothing (took it while in Santa Fe last December).
I will post a picture of my hair later. Thank you ladies for listening to me when I need to vent and share my fear with you.
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My hair is wavy.. I had straight hair before. 0 -
my hair is wavy now.. I had straight hair before all these...0 -
JNKK, you look fabulous! i'm jealous of all the hair here! I will post a picture soon....but right now my hair is both short and really, really white, so you can't see it hardly at all. This is very strange, since I didn't have more than 4-5 white hairs before I was diagnosed. It's really surprising how it comes back in a whole new color.
This week I had to go to the plastic surgeon twice and had a bit of difficulty at the onc's office. By Monday my seroma was back (I think that was the 7th one). The plastic surgeon drained it and fussed at me for not coming in sooner. And then the very next morning, I woke up to that breast being swollen, red, hot, and painful. I kept thinking surely I was exaggerating, but by 1:00 I was ready to go to the surgeon's again. She said that the seroma was back and she drained it yet again. This time it really hurt, but she attributed that to her pressing on it the day before. But I've had these removed for months now, and they've never hurt before. She said she was sending a sample off for analysis and prescribed 2 bigtime antibiotics. When I got home I realized that I had a low fever, so I've been taking these antibiotics religiously.
Then on Wednesday I had my next infusion of monoclonal antibodies. However, my anemia was the worst it's ever been, so they insisted I get iron infused first. And my potassium is high, which is bad for my heart...and I have another echo next week. So they're trying to figure out what's causing that.
Funny how I got through the diagnosis, surgery, and chemo without a bunch unexpected happening, and now I'm really pretty scared. I don't like unexpected things to pop up!
Hope you all have great weekends!
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Brink - Yay, you’re in the chemo homestretch! Do you have a surgery date for the DIEP?
Judy, you look great! Are you going out topless yet? Funny how the hair comes in a different color - at the moment I have LESS gray than I did before!
Fairchild - I bet your hair darkens up in time mine did - it started out almost colorless. That is really concerning about th possible infection and the levels being off. I hope they figure it out soon.
We’ve got Noah’s ark conditions going on here. My neighbor said they have three feet of water in their basement and yesterday one of the neighborhood fire trucks got tipped over on a flooded road.
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Fairchild - my liver numbers were good throughout Taxol but went up after surgery so maybe there’s a bit of delayed reaction or something. Hope your numbers go back to normal soon.
Wanderweg - 4/26 is my DIEP surgery date! Seems far away at this point but I’m sure it’ll be here in no time. New England has had some rain but nowhere near what you are having.
Looking at everyone’s pictures makes me feel like everybody has lost a bit of weight, which is a good thing I think. Hope everyone stay healthy as much as possible!
Judy - I rarely post on FB and most of my FB friends don’t know about my BC diagnosis yet. I probably will let them know when I’m done with surgery and such... still haven’t thought about how/when to do it yet. Thoughts?
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Brink - I don't have an opinion about the facebook issue, but I posted the night before my BMX. It was the first I'd said about my cancer to all but my closest friends and family, but I wanted to control how the information got out. 4/26 - you're right, that will get here before you know it.
We've gotten a crazy amount of rain - these two yards in our neighborhood have a 4-foot high fence between them and you can see where part of it is completely submerged!
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Happy Sunday all. I am back from Florida - where the weather was fantastic - and off to New Orleans in the morning, weather permitting.
Wanderweg - I hope you're doing all right with the rain. That picture is crazy.
Regarding FB, I'd be up for it, but I also didn't share anything about this journey until very recently and do not post about it. However, we could have a FB messenger group. It's a little more accessible, especially from a phone. I have a group with some college friends and it comes in handy and is a lot of fun.
Fairchild, I hope you figure out what's going on and that things start to calm down. I get how unsettling it is, just when you think the sailing should be smooth(er).
KK, I hope you enjoyed Mexico! That's a great spot.
Brink, glad you have a date! I have done a little bit too much traveling lately, and it will calm down for me in March. The silver lining in this whole thing has been finally adhering to even healthier habits. Some things I did really well. Other things lacked consistency, especially water and cardio and supplements. Now that I have it down, I feel a lot better and some things that bothered me in the past - inflammation in my hip and a chronic cough are gone. So I'm figuring out how to keep them going with the travel, because the travel will not go away for me. I'm also working on my husband to go meatless for a month, aka lent for me.
Here is my hair update, btw January 6 and tonight. I am surprised at the difference and it is starting to not just stick straight up! What you can't see in this picture really is the fact that my hair is different textures - between what I kept that was brown (still fine), gray that survived chemo (of course), and is now coming in new with chemo curls, brown and gray. I spent an hour at Blue Mercury this weekend playing with hair products that in the past were too much for my fine hair. I am now understanding why so many women who get breast cancer keep short hair......but I'm going to tough it out.
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I'm 100% topless now. It was so liberating! I don't think I'll ever wear another beanie. It's just long enough to get pushed down on the sides when I sleep, but the top still sticks up, so I have a really wide, super short mohawk in the morning. 19/33 rads down and going better than expected. I'm in the sunburn stage with a couple of blisters popping up, but it's not horrible. And my energy level is holding up okay, but my workouts have come to a screeching halt. More mental than physical, though. I'm just taking it easy; giving myself a break. I plan to take some time off work in March even if I don't need it from the rads. I just want to sleep in a few days consecutively.
I like the Facebook idea. Judy and I are now FB friends (lovely family!)
I'm Sheri Alvarez. Profile pic is of my boys and me. I'm in a striped dress. My initial diagnosis, only my very close family and friends knew because other than surgery, I never had any outward sign. This time, I have largely avoided pictures of me except for distant pictures from Spartan races. But it's just a matter of time. I've decided to let it go. (Now that I have a hairline and eyebrows…) However, I agree that the conversations between us should remain private. Sunocean, hope you're healing well and the drains come out soon!
Brink, how are you holding up on AC?
Great pictures! BeingPositive and Tiger, your hair looks very thick and dark! Wanderweg, so much water! We've had a wet year so far, but nothing like that!
KK2018, yay for Mexican vaca! Hope you're having a fantastic time!
Fairchild, are the antibiotics helping?0 -
Judy, great hair growth and great idea about FB! I’ve added those of you I can find so if you got a friend request from a Meredith, that’s me 😊 I haven’t gone public with having bc there, so I like the idea of a private messenger group but now that it feels like I’m through the worst of it I’m not too fussed if it does come out.
KK - your pic looks so joyful! The cliff diving sounds amazing. Hope it continues that way!
Fairchild - I’m sorry you’re having such a rough go of it. I hope the antibiotics do their job.
Wanderweg - that flooding is crazy. Looks like a good time to batten down the hatches and crack open the whiskey 😉
Brink - glad to hear you have a surgery date. It must feel good knowing the end is in sight.
Tigerlilly - your hair growth is incredible! Am I right in remembering you volcanoes? Hope you’re able to get to New Orleans.
Piksie - so glad to hear rads is going ok and you are enjoying going topless. Gorgeous FB photo with your boys, too.
Today was day 1 of rads for me and I’m already feeling a bit sunburned, but glad to be that much closer to being done.
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Wanderweg - I still wear my wig when I am out and about. I am not ready to let it go yet. I want it to grow a bit longer before I go topless.
Tigerlily - your hair looks great!! Travel is therapeutical, it keeps your mind off other things, at least that’s for me.
Sheri - thank you for the compliment. You too have a very lovely family.
As for FB, I agree that we should keep the conversation private. I just thought FB is easier for us to carry on a conversation.
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I’ve added those of you I could find on FB! If you see a friend request from Irene that would be me! I think it’ll be easier to share some things over a private messenger group as I’m always aware this is searchable public internet forum.
AC #2 has been better than #1, thankfully. I just sleep day and night on day 4 and then slowly emerge on day 6. At least there’s food I can eat... I did notice my neuropathy in my fingers is getting a bit worse so I’m debating whether to take Gabapentin again, but maybe not for now. Also I’m sitting here with 1 inch hair all over my sweatshirt so I’ll probably need another shave. Knowing it’ll come back does make it easier this time around.
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Judy, that is a lovely pic! Though you mentioned, I didn't see any gray at all. Hair growth looks awesome. I am almost inactive on FB. It's been years that I posted anything or even visited. I think that happened when Whatsapp took me over. All those who really matter to me are on WA. So stopped visiting FB. I have also not shared BC news with anyone other than family and couple of close friends. Now that I am almost done with treatment (though may need another 6 months of chemo pills), may share it with others. But not sure yet.
Tigerlily, thanks for the breakfast tips. I like the idea of adding pea protein in smoothie. Love your hair! So thick and dark. Hope now you will get some rest time before next travel. I love travel and visiting places ( even if it is just a day trip) as long as I get veg options to eat. It feels rejuvenating. But haven't been anywhere since last year. Looking forward to some trips this summer.
Meredith, y'day I couldn't resist and added lil sugar to my tea! I am thinking maybe once in a while having a bit of what I like will keep me sane and will boost to continue healthier habbits other days. Hoping that rads will go well for you. The toughest part of the treatment is behind you and the end is in sight.
Wanderweg, I appreciate how you have continued intermittent fasting. I am trying it just from couple of weeks, but sometimes find it hard to wait that long and sometimes even after eating fruits, nuts etc. still feel hungry thinking I fasted so long and ate so less! Yeah, will try smoothie, fruits and nuts once start the office. You can see some gray on both sides in my pic. And I have even more of it near the ears. Hope you are staying safe and well in those crazy flood situation.
Irene, good that second round has been better than first. Knowing what to expect takes away half of the tension. Wishing no/minimal SEs. For neuropathy, are you icing your hands and feet? I had done that and feel it helped me. Try not to lose weight as you have Diep coming up. But if possible try also to exercise, even if just 10-15 mins. I had continued walking whenever possible during chemo. Staying active prior helped me in surgery recovery.
Fairchild, how are you now? Hope antibiotics are helping.
KK, those are great pics. Seems you had fantastic time on vacation. Must be revitalizing.
Sheri, yay for going topless. Good to know that rads are treating you well. Have heard that it causes energy slowdown. So yeah, good way is to take it easy and listen to the body. You have been so active always, you will bounce back after rads.
Have good week ahead everyone.
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Hello, is it okay to join your FB group? I'm from December 2018 group but I follow your group and I learned a lot from your posts. If I could join, please PM me so I can give you my FB or I can request to join your group. Thank you.
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Sure, no problem. Please PM me if you would like to join our FB group.
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Also in general I’ll still post information I find useful to everyone on this forum.
Such as this glass jar suction thing I tried yesterday which was supposed to help with muscle tension. Well it didn’t seem to do much for me... at least it didn’t hurt.
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Brink, bummer you didn't see results from the cupping. I know people who swear by it, but I've never tried.
I'll also continue discussions here. Current question: did any of you give gifts to chemo nurses or radiation techs when you completed treatment? If so, what?
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I suppose everyone's body is different so cupping might help some people, just not me...
I'm planning to give something to my BS and MO since they have been very nice. I've been having different nurses almost every time I'm there so I'm thinking probably not for now. Maybe a bouquet of flowers? I was thinking of getting cashmere gloves for my BS. Not sure about my MO yet.
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