Chemo starting October 2017
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Looking good, DKK.
Eightoutof...it's wonderful that you're willing to participate in clinical trials. I pray every day that they'll find new treatments for us TNBC ladies. Just one word of caution that I learned from someone (sorry, I forget who) on these boards: If you do participate in a clinical trial, it often makes you ineligible to participate in other future clinical trials. Or it may make you ineligible to receive other similar type drugs that may come on the market in the meantime. So make sure that you know the repercussions. That being said, as you probably know, if TNBC strikes again, it strikes soon and hard. So I completely understand the mindset to be proactive now!
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Lisa- I hear you. Thank you for your concern. That is something I would have to find out about depending on the trial I would participate in— if any. So far, I do not qualify for any. But my issue is that I read that people of color do not often participate in trials and they know so little about why TN is even worse for people of color. It seems though that I just don’t qualify for any. There is one that will start after my radiation ends but even that one my doc said she isn’t certain I would fit the criteria. So while I’m willing, I’m committed to nothing. I’m just learning if I can. At the least it’s good to know that there are many TN trials being conducted. We need them and we need more information about TN. I am thankful though that I am getting through my treatment for this diagnosis and currently my prognosis is good so I’m hanging on to that and doing whatever I can to stay well.
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Thanks so much for the well wishes Peter, Joy, Hiker, Tri, Lisa and everyone else.
Hiker- congrats on ringing the bell. Sorry you didn’t get a picture. Truthfully, I wouldn’t have cared about the picture but my sister was already set to take pics and video tape (which she did). I didn’t want to video tape as I’m not liking how I look now but she took it sooo... lol I’m not complaining, this has almost been her journey too since she’s been with me through it.
DKK - you look beautiful! ♥️
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Hi, guys. I feel like I've missed a lot of posts this weekend! Sorry I'm a bit behind the party. I hope you all had a good last few days. I've been psyching myself up to get back into the office next week. I feel like I'll be up to it. I can't believe how much I miss doing the most mundane bits of my "old" life! It'll also mean riding the subway with a face mask for sure.... the flu has been bad lately and even though I got a flu shot I'm worried a bit.
EightOf8: I loved seeing photos of your smiles on your last chemo day! It must have been a great day for you and your sister. I hope that the right clinical trial trial comes up for you. Good luck with the start of radiation. I'm going to have a thousand questions
LisaRx: Thank you so much for posting that Joan Lunden video. She really address so much of what I've been feeling about finishing up chemo. Thank God for you guys on this thread that get it.
TriLady: How did the false eyelashes and eyebrow trials go this weekend. I may start with some individual lashes to fill in the blank spots when I go back to work. I think I'll need A LOT of practice.
Joy - PLEASE tell me you're getting that puppy!! So adorable. Is a Morkie a Maltese + a Yorkie? Thank you for the encouraging report from your sister-in-law. It's news we all need to hear. I hope we'll all stay on this thread. I've seen threads for groups starting chemo in 2013 so we can all stay here to support each other for a looooong time!
HikerVA - good luck with the co-worker. it's too bad that it's such a small office so there aren't other people to buffer any negativity she sends your way. I hope she gets over it and the atmosphere becomes more comfortable.
Petey - How're the tummy and eyes doing? Hang in there!
DKK - You look fantastic! You are a really good makeup artist. Your eyes are especially great. Do you have on false lashes?
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Good morning ladies! All plugged in and getting it done! I figured out a couple of visits ago how comfy the beds are! So happy for the progress we're all making and hope that you all will continue to share your journey. Just 5 more Taxol for me after today and then radiation and then yet to be decided on another surgery for reconstruction. I have lots of Taxol SEs but nothing like the AC SEs so I continue to be thankful for that. Hope you all find joy and comfort in the day!
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Hi everyone, CONGRATULATIONS to Hiker and Eight for finishing Taxol, like me. I know you are excited, nervous and scared for the next steps. DKK rocking that hair and make up. Trees, you look very comfortable in that bed. Lisa, thanks for the Joan Lunden link. It was so helpful to learn what she felt like with chemo over. You would think it's a time to celebrate but for me it was like this has been my life weekly for months and now what. I'm on to Herception but it feels strange going in for the infusion, like I'm a stranger now since it's just every 3 weeks. The ladies at treatment were all so wonderful and I miss them... I know this too shall pass but it was great to hear Joan and to know that I'm not alone in these feelings. It's time for me to make some decisions about getting symmetry after the right mastectomy and tram flap reconstruction. My unaffected breast doesn't match and quite frankly I'm not very happy with the reconstructed breast either. This is just all too much! You ladies are awesome and I wouldn't have made it this far without all of you...SO A BIG THANK YOU TO MY LADIES!
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Oh man. My wonderful sister-in-law just called. She went in for a mammogram due to having some fullness and itching and discoloration (some of it since Nov. when they treated her for an infection) and ended up having an ultrasound. She has two lumps in her breast and one under her arm. :-( I feel so bad for her and her husband right now to have to go through this. I can't believe our family is going to go through this again. What the heck did we do to piss off karma?
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2Brandy, congratulations on finishing up Taxol.
Petey, I'm so very sorry! I'm afraid to say that I can relate. My SIL (brother's wife) had a needle nose biopsy today on some "microcalcifications" in her breast. We'll get results on Wednesday. It's awful!
It's wonderful that survival rates are up, but enough already! Is it our diets? The air we're breathing?
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Hey, Petey. Nope - none of this is fair!! Is your SIL scheduled for a biopsy soon? I hope the results are benign. The waiting she has to go through now is rough.... thank goodness you can walk her through it. She doesn't know us but tell her she has a bunch of women from around the world hoping for benign results for her.
2brandy - Good luck as you move into the Herceptin phase of treatment. I hope it is gentle to you. I'm sorry your surgery results are leaving you dissatisfied. Have you spoken to your surgeons? Is there anything you can do now or do you need to wait? Are you having radiation? I'm still trying to learn about how radiation effects surgery options.
Trees - More than half done with the Taxol, right? Doesn't it feel good to be over the hump? I hope it's nice and easy.
I still hoping to go back to the office at the end of the week. Today I bought some individual false eyelashes and am going to practice filling in the gaps. This could get messy.... never have done it before. Plus the neuropathy has made my fingers a little clumsy. I'll let you know how it goes.
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Lisa - I didn't see your post when I was writing mine. All the best for your SIL, too. Please let us know what the biopsy says. We'll be thinking of her, too!!!
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Ugh! Sorry to hear of other women, family members going through this. Lisa, my BC story started a year ago, next week with microcalcifications shown on my regular mammogram. They were ruled probably benign after a diagnostic mammogram. I was told lots of women have them and it's just part of the aging process. I hope that is the case for your SIL. Mine are in the other breast than my cancer lump, so we will see what path says after surgery. If I would have known what I know now, I would have pushed for a biopsy back then. Hoping both your and Sara's SIL are in that 80% of benign biopsies.
It's been weeks since I have slept well at night. It's usually not emotional reasons. Its either I am have hot spells (terrible the last few nights) or I have to pee. I am up every hour or two. Even taking 1 full (1mg) Ativan pill does not wipe me out anymore.
As part of my want/need to be more healthy, do you take vitamins? I use to take a multivitamin and a mega red before dx. I had to wait a week for my initial biopsy because I was taking mega red and its a blood thinner. Since then, I havent taken anything other than steroids (when told to) and ativan. I added some vitamin D3 to my grocery list today, as many women mention that one.
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Jennifer, Thanks for the heads up. I'm glad my SIL is getting a biopsy. My BC also started out as a "we think it's benign but let's keep an eye on it" lump. It was there nearly a decade before it decided to grow and try to kill me. I'd have pushed for a biopsy sooner, too!
I rarely sleep through the night for the same reasons as you, though I tend to immediately go back to sleep afterward. This isn't totally unusual for me because I was getting up at least once a night before BC with night sweats or to pee. The joys of perimenopause! If you're getting up every other hour to pee, I think you should consider reducing the amount of water you're drinking after 5pm and see if that helps. I drink much more water in the ~3 days after chemo than I do the rest of the week. Once I'm confident that the Taxol is flushed out (and I use the taste of water as my guide), I reduce the amount of water to a relatively normal (healthy) level, which is to say that I don't guzzle it like a sailor all day and all night long.
With my MO's blessing, I take a B-vitamin complex every other day to help with my nail issues with Taxol. But I don't think it's recommended that we take supplements or vitamins without clearing it with our MO as some compounds interfere with chemo. Once chemo is complete, I plan on taking a vitamin supplement with iron and calcium as I'm nearly 52 and want to stave off osteoporosis. I'll also add turmeric (with black pepper) to my diet every morning (with my superfood eggs) as it's proven to be a tumor-fighting spice. (It's a staple in Indian diets and they opine that BC rates are much lower in India in part due to their curry-heavy diet.)
For those who want to get healthy after chemo, there's another video on Joan Lunden that talks about the 3 big things we can do to improve our survival rates: 1) Exercise daily; 2) Eat healthy; and 3) Get enough sleep. The doctor also gives tips for survivors on what we should watch out for in case of a recurrence. Basically she says that we should know our bodies and set the bar low for any changes. For instance, if we used to be able to walk 1/2 mile without losing our breath, and suddenly we start to lose our breath, we should discuss this with our MO or PCP. I found it helpful and hope others do too.
The second video is a "What to eat" video. (He also talks about supplements in this one, Jenn)
https://alivewithjoan.com/videos/doctor_on_demand_...
https://alivewithjoan.com/videos/dr_murad_be_happy_with_what_you_eat-4019
4 treatments/22 more days of chemo!
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Vitamins. I’m lucky to be close friends with the oncology pharmacist at our clinic. With her blessing I take vit D, Zinc, Biotin, melatonin. I will start fish oils when I’m done treatment.
Restless sleep. My goodness yes. Up to drink due to wanting salt all day, up to pee, blankets off, blankets on, HOT sweaty flashes. Thank you chemopause. Lol. I have resigned myself to a nap each day to compensate for bad sleeps. The nurse navigator said part of survivorship is sleep hygene. She says she will help me once chemo and Rads are over.
Rads. Got the call yesterday. Calgary. They will do consult, mapping, simulation all in one day. Feb 6. Rads will officially start three weeks after final infusion. I would rather be driving daily to Lethbridge rather than living in Calgary but I don’t get to decide that. I’m struggling with being alone. That’s the worst thought. Maybe I’ll tske Felix. Best news? A CT. But NO barium. Lol
If you haven’t already I highly recommend face to face meetings with those on the journey with you. Maybe because I am in a small town but there are four of us under 45 that meet each cycle for breakfast. We met by chance really. It’s nice to have someone ahead of you in the process (Karla for us) and to mentor a newly diagnosed women (amber for me). This is an experience that only they understand and when one of us says “I’m so tired of cancer” we really understand.
Those women, this group and my family have sustained me through this.
I think neulasta bone pain is done. I did much better this time. More prepared?? I’m grateful. It was AWFUL last time. Maybe Felix helped??
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Thanks ladies. My SIL has a call in to her OBGYN today to try and change her surgeon. They will see when they can get her in. I hope it's soon!! I didn't realize that many have an appointment with a surgeon before the biopsy and that a surgeon often times does the biopsy. My radiologist (a small stand alone office) did the biopsy, so that's what I expected. Then I read more up on that last night. I do wonder what there is that is causing this. Is it birth control? Is it environment. My SIL has smoked for years. She's tried to quit a few times, but she finally really stuck to it around Thanksgiving. My cancer was a bit of a wake up call for her and my BIL. She is probably 35 or 36 and they have three beautiful young girls. They just moved to a small town an hour away from the family and her hospital. She home schools and does so much around the house. If the results are cancerous, things are going to be rough for them.
Lisa - I'm praying your SIL gets good results!
To everyone else - keep hanging in there!
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Joy - Is Felix the puppy's name? I love it. It means "happy" so yes, I think Felix should definitely go to keep you company in Calgary. Will you stay with friends or family? Will you stay at the center?
I have gone back and forth with my oncologist re: vitamins and other supplements since I started seeing her. The latest instance was that I wanted to take B-12 because I had read many places that it could help with my neuropathy. She asked me not to take any supplements or vitamins while I'm actively being treated for cancer. Her stance is that vitamins and supplements help the whole body, including the cancer cells. The supplements can give them a cover to resist chemo and radiation. Leave those cancer cells naked and afraid. Since I've thrown in my lot with her I've decided I'm going to go along with her theories as much as I can, I remind myself she's the physician-scientist at Sloan Kettering, not me. It's hard for me to give up control, though.
When I first was diagnosed I spoke with a friend who is an aroma therapist. She had a similar perspective when she declined to work with me using aroma therapy because the aim of her work is to heal/effect the whole body harmoniously. If there is cancer in the body you don't want those cells to benefit from the treatment, too.
One reason I'm not sleeping lately is the financial stress this damn disease is giving me. We don't really talk about it on this thread so I hope it's not uncomfortable for anyone. I just need to share that it's like another side effect for me. How am I going to pay off these huge insurance deductibles given I couldn't work for most of the past 4 months, which means I didn't get paid? And my cancer had to show up toward the end of the year so that I have two fat deductibles to pay during one course of chemo/surgery/radiation! Thanks for letting me vent.
Okay - off to set up another payment plan :-)
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Agatha, I'm sorry about your financial woes. It's not an uncommon problem. My daughter's MIL is entering the hospital for a stem cell transplant to hopefully put her CNS Lymphoma in remission. She has good insurance, but still has to pay 10% up to a $5000 cap. She doesn't have $500 let alone $5000. The advice I gave her is this: Focus on healing yourself first. When the bill comes, call and ask for a reduction. Then ask for a payment plan. Hospitals are used to working with patients. You cannot stress about it because stress is BAD for your recovery. It is what it is and you'll have the rest of your life to pay it back.
Edited to add: I just got copied on an email where my daughter's MIL, Lily, is working with the hospital's "Financial Navigator" to work out a payment plan. Agatha, you might want to give that person a call and see if she can assist.
Sara, sorry about the 3 hour commute for radiation. I'm amazed that you have no say in it but I guess that's the downside for universal health care. If the daily treatment is short (e.g. 2 hours or less), I'd say definitely bring your new puppy if the lodging allows it. Studies have shown that people with pets live a longer and happier life!
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I don’t envy the health care bills of you ladies. Yes. The commute to Calgary will really suck. So will staying there. However I have paid for nothing and have felt I’ve received excellent care. Additionally, in Canada we can deduct any uncovered expenses on our income tax. I think our family is up around 3500.00 for the year. That will really help come tax time
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Agatha, the financial burden is adding to the stress of dx. We have insurance through my husbands job but our deductible and yearly out of pocket max is more than we can pay. And yes, since this carries over into 2 calendar years it's double. I am getting billed by 5 different sources instead of one combined bill. Even with payment plans, 5 different billers adds up. I do get collection calls from time to time even with payment plans. I told my husband from the start, we are not putting any of this on credit cards and paying interest for 10 years on it. They will get something each month and it will eventually get paid off.
3 of the 5 bills will be paid off in a few months. Right before my surgery and any future treatment bills come in. I can only imagine how big the surgery bill will be. But oh well, add it to my tab.
On a side note, I am sitting here watching trashy tv. The bachelor. I am having eye lash envy! I know those girls probably have fake lashes on but still. Yesterday I counted 5 lashes on the bottom of each eye. On the top maybe 15 but clumped a few together then big spaces without. My eyebrows are pretty much gone in the outer portion. I feel like I look like a evil cartoon character now. I think losing eyebrows and lashes is even harder than my headhair.
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Lisa and Sara, praying for both of you SILs. Praying they are in the 80% that are benign.
Oh yes, the payment plans, out of pocket maximums. I swear this disease bankrupts people. And we October chemo starters did get the great luck to pay twice. My out of pocket is $6000 and I will meet it again this year. Makes me sick.
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My prayers to both SIL too, hurts to know your loved ones may be facing this too.
2Brandy: Just reading your post, and I met with my surgeon today. I am thinking of having a tram flap, I did not want to stay flat because only one breast affected and am not favoring an implant. My surgeon does microsurgery and does tram flaps. I would like to be able to use my own body fat to make the new breast. Did you have any negatives from the surgery that you would not recommend it. Any info you could provide would help.
Everyone that posted photos, really love seeing those!! And everyone looks so good.
Joyseeker: Did you get the Puppy??? I have not seen a reply from you that you did, but I loved the photo.. hope you did get him. My 4 yr old Labradoodle has been my best friend since I got him. He was hiking with me at 9 wks old...and has not stopped. He has been my right-hand through this illness too. He hears all my stories and concerns, and is my shadow.
As I mentioned above, I met my Plastic Surgeon today and I really like him. He said that during the mastectomy he will only be inserting an expander. They will have to wait for all pathology reports to come back prior to anything else, because if I need radiation, the reconstruction or tram flap will have to wait until after that. He said that with the expander, I can decide if I want tram flap or implant, so I do not have to rush and make the decision. His office also does nipple reconstruction and tattooing, so all reconstruction can be done at one office. My concern is that it sounds like surgeries will be going on for a while... like maybe 3-4. This was depressing for me because of Financial Reasons and Missing Work. I am glad you all brought up the Financial, I am single Mom, and my deductible of $5000 has been met. I was lucky in that my insurance year starts 7/1-June 30th... but if surgeries keep going I may end up having to meet another deductible!! Yuck. But as others have said, at least we are alive, so hard to complain, but we can let off the steam here!!! Because all of us can relate.
Eyelashes: I am like others, reporting single digit numbers on lowers and maybe 20 on top. I do have a pair of false lashes I never used and can try and practice... not really looking forward to it, but looks like I am heading toward that direction like it or not.
I worked from 9 am to 5:30 yesterday and did okay. I think I will be alright. The grumpy co-worker was out yesterday but came in today about noon, thank goodness I got to leave at 1 pm for my doctor appointment. I think next week I will do what Petey suggested and buy her some flowers to thank her for being there while I was out, it won't hurt and like Petey said, it will brighten my day to see the flowers too.
Nice to hear everyone's daily posts, it helps me get through the day.
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Ladies, praying for the SIL's. No more CANCER!!!! I'm with you all on the financial stuff. All of us were unfortunate to be diagnosed towards the end of the year and have to meet those two deductibles and out of pockets $7500 a year for me. I was fortunate enough thank God, to take out an Aflac cancer policy 2 years ago, so that has helped me tremendously. Also not sure about other treatments but my oncology department put me in for the BioOncology Co-pay Card for my Hercepton. Not sure what it's all about but for ladies doing Herception it might be an option, so google their site. On the vitamins, I have been taking biotin and my nails are growing like crazy, even though they don't look good since most of them are dark from the chemo. Hope it does the same thing for my bald head...and grows lots of hair...lol. I also take vitamin D3, multi, and a bcomplex. Hoping some of this makes me feel better. Have a great week ladies.
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Short answer. We got the puppy 💜💜.
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joy- your pup is adorbs!
I totally can relate re: health insurance and the end of the year. The deductible is starting all over again. Anyway, nothing to be done about it. I totally reconfigured my finances and my life based on my medical bills— including moving. Sigh
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I just realized my three week eye twitch is FINALLY gone. Joy!! Oh chemo you are a weird beast. 16 days to go of chemo
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Ladies- can I say eyelash FAIL! lol I think I need a little more practice and perhaps a little trim.
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Tri Lady. You look BEAUTIFUL!! 😍
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Thank you Sara! Wow can't believe how hard it is to put the eyelashes on. Might be easier just to go without!
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TriLady, I think you look great. Good job...I have tried and tried, just can't do it.
Joyseeker..the pup is precious and awesome news about the eye twitch.
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Hi Teese,
Thanks for the advise. I love the way you presented the advise.
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Wow! If 5 days or a week goes by I so quickly fall behind on everyone! I live in NC, and when 6" of snow come in the town halts for a week....coming from Canada, Sara must be laughing at our 6" shutdown! Hit me during a good week, and I Loved the time with my kids sledding and laughing non-stop! Now it's back into the 60s and I've been sitting outside enjoying the warm sunshine on my skin-- bring on the vitamin D!
Speaking of vitamin D, I supplement daily with it along with biotin, milk thistle, a probiotic, and prescribed iron supplement. I sparingly add in zinc, cranberry extract (right after chemo), b6/b12 (help with neuropathy) broccoli sprouts, turmeric and melatonin. Agatha--I find it odd that a doc would say not to take any supplements because it will benefit the cancer cells too. I try to get all my nutrients through my diet, and the supplements are taken when I fail with food.... does that theory mean that the doc wants you eating poorly as to not give nutrition to the cancer cells through food, and instead eat junk? I hold the docs at MSK very high, so now I'm trying to figure out why they would suggest such. Hmmmmm....
And I hate hearing about the SILs. I've had several women in the spectrum of my life be diagnosed over the past several months and it just shocks me to no end! Please keep us posted on their status. We can certainly all empathize -- sending ❤️!
And speaking of how we can all relate.....I've tried the fake lashes- they are awful! Make my already twitching eyes go into hyper twitch mode! I found and wear a pair of "fakey" eye glasses where the rim falls on my eyebrows to disguise the 4 hairs surrounded by pencil, and take focus off my lashlessness. Works for me in public to avoid stares. And can relate to my happy new year bubble bursting when all the new medical bills started rolling in. Stinks to have to meet that deductible again, especially since I have not been working either. Payment plan here we come!
And that puppy!! Felix is so precious! I have a 4-year-old cockapoo that I adore and has helped me sooo much as my snuggle companion through all of this-- I will send pic. Sara, I have been looking into the possibility of receiving proton therapy for my rads, but there are no facilities in NC and will have to stay in Florida with either my brother or my folks in order to do it. Tough thinking about being away from my family for those weeks, but we figure if it offers me some safety since I have already been radiated in those regions once before and there are so many extra risks to me receiving standard radiation , then it is worth it. Any boy, if we can make it through 4 months of chemo then 3-4 weeks of rads will fly by like a blink of the eye!
Yesterday marked 1 week until final chemo for me! I just want to sing the Alicia Keys song "this girl is on fire" at the top of my lungs while marching out of the chemo lounge! Love to all of you, and thank you for being a rock through this journey! Enjoy all life dishes out!
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