Chemo Starting September 2018
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Brink, Mom and I noted the same. Thank God I had chest pain!
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Happy new year everyone!! I have been busy enjoying the time off with my family. My 3 small kids keep me busy!
Piksie I am really sorry to hear this but glad it was detected at this impromptu ER visit. And good for you for going on a date. That's awesome! Regardless the outcome at least you went. I remember doing online dating back when it had just started and all my friends thought I was crazy and I was going to get murdered. And look at dating now!! Its the norm.
I cant remember if I mentioned this (chemo brain) but I only got 5 out of 6 of my chemo treatments due to low blood platelets. Now gotta focus on getting better for surgery scheduled mid February. Surgeon wont operate if they don't increase so hoping they do.
I have two boys and was laughing reading all the comments about how boys smell. . So true. They do stink but I wouldn't trade them for the world:) haha
Tigerlily love the hair. You look great.
I always enjoy reading all the updates
Here's a pic of one of my stinky but adorable sons celebrating the new year. Sorry if the image is huge I upload via mobile and can't seem to know how to decrease size. As u can see I didn't loose my eyebrows which I'm so grateful for. Now hoping my hair comes in!
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Piksie - I think you’re smart not to put yourself through a bone biopsy if it’s not really going to add anything. How’d your mom take it when you talked with her? By the way, grapefruit is also a no with tamoxifen (along with citrus peel of any kind and benedryl). Anyway, I think of you often and am hoping the meds kick the bone mets ass.
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Good morning, ladies. I'm on a little emotional high right now. I went to boot camp for the first time since August 16. I've stayed away because of surgery recovery (8/17), part WBC concerns, but mostly because I'm bald (and a few other SEs). It's a small gym, similar to CrossFit so the same 15-20 people in the class I go to (4:15am), somewhat clickish, etc. Today was condition. Ugh!!! My HR was through the roof compared to six months ago, and I almost barfed a couple of times, but I did it. And I dragged a couple of friends with me who have fallen off the fitness path. It really feels good! I've joined a 90-day accountability group with the Spartan crew and need to establish my goals. The first half will be radiation; second half Ibrance, so I have no idea what is realistic, but I'm going to shoot for the moon. I need all the distractions I can get.
Mom took the bone mets news very well. We talked while doing a jigsaw puzzle.
Turns out she heard the the ER doc's comment about the spot found on the CT, but didn't want to ask. So she wasn't completely surprised. I had just come from my meeting with MO so had tons of info and was able to answer all her questions. We got back to laughing and gabbing by the end. Meeting with RO today. Mapping, tattoos, and a start date. Woohoo!!!
When does chemo brain end? My coffee mug and sugar bowl were next to each other on the counter. When adding milk, I poured it into the sugar.
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Piksie: You are beautiful inside and out!!!! : )
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Ah, Piksie, I'm sorry you didn't get better news. That just sucks. But, I'm glad there is a plan in place. Thanks for the kind comments on my hair and hang in there. So glad you spoke with your mom.
BrinkofEternity, I definitely believe the cold cap helped. While I didn't avoid hats, I was hat free with toppik about 6 weeks after my last infusion and am not without the toppik. My MO said I would still be basically bald at this point without the cold cap.
Wanderweg, you rock going to PR! I could use that about now too.
I'm 1 week post radiation! And 1 week since starting hormone therapy Aside from sore knees and occasional hot flashes, which persist, no additional side effects. I do a bone density test today and start Zometa at the end of the month.
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Sheri - I agree with Brink! It is meant for you to find out sooner than later. I am mad that you have to do more treatments but I do believe that you will beat this shit too!
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Aw! umakemehappy, you made me happy.
Radiation meeting was FULL of information! I was offered a randomized proton therapy trial but not sure I want to apply. Its value has been proven in early BC, but not advanced. I'd be a true lab rat. Are any of you familiar with proton therapy? I'm currently scheduled to start on 1/28 so need to decide.
Happy Friday!
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I heard of proton therapy as a super-accurate and localized radiation therapy that can target specific spots of cancer. If they can use that to eliminate your bone spots, that would be great!
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Piksie - what a great photo! I am in awe of your determination. I couldn’t do the workouts you do even before I got cancer. It sounds like your talk with your mom went well and I’m glad for that. As for the chemo brain, I see no end in sight! But when I forget something I just laugh and say “chemo brain” and let it go. There was a woman in my support group who did proton therapy who was pleased with the results. Does the radiologist have a preference for you? I think of you often Sheri, and send my good thoughts your way.
Tigerlily - you would indeed still be bald or close to, since I am. But my head gets fuzzier every day so I’ll get there. How’s the letrozole going?
I’m sitting here waiting for 11 am to roll around so I can eat something. I’m trying to stick to the 16 hour intermittent fast but last night I went to an event that had mostly simple carbs so I ate lightly. Now I’m really hungry
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Hi Wanderweg, the letrozole is going fine. I don't believe I have had any side effects from the letrozole or the lupron injection. I have had a slight headache the last few days, off and on. I usually get headaches when I'm dehydrated but the good news of this breast cancer thing is that I am FINALLY drinking the amount of water that I should. My symptoms continue to be the same as about 2/3 of the way through chemo - sore feet (tops) and sore knees and extreme cold and moderate hot flashes. It's the lack of estrogen. I've added joint juice and sea cucumber to the growing list of supplements. How about you?
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Hello everyone, I think I'm writing for first time in the new year. Happy New year to all!
Piksie, you rock! Your every positive step is just amazing and very inspiring. I'm glad that you received all the needed info and treatment plan is set. Also happy that your talk with Mom went well. Sending you good vibes.
All pics shared by everyone are great. Good to see the progress. My hair is also growing though it is initial baby hair growth.
I am getting ready for my BMX on 18th. Going through different tests everyday. Thyroid levels are still low in recent blood test. So PCP asked to see endocrinologist who thankfully said that she will clear me for surgery as this does not seem to be concerning. Today met with MO for my second lupron shot. She informed that my bone density level is normal.
Tigerlilly, thankfully even I did not feel any SEs in first month of letrozole. Hoping that will continue. I'm having Hot flashes since chemo and guessing those are my friend for a long long time. But what is Zomata for?
Wanderweg, why are you on intermittent fasting? That sounds tough. I also enjoy eating sweet, but will have to control now.
Have a good and peaceful weekend!
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Tigerlily318 - I'm glad cold-cap did help you, although it may not have seem so in the beginning. Now that my hair is growing I'm debating whether to do something to keep the hair through my AC treatment. But I think AC usually takes 2 hrs/infusion? I'm not sure if I can cold-cap for 2 hours...!
On sugar, the nutritionists at Dana farber all say it's not sugar itself that's the problem, but sugar spikes, which trigger insulin surge, which may stimulate cell growth. To prevent these spikes we should eat a lot of fiber and healthy food before eating sweets. So dessert after meals sounds good to me.
On fasting, I thought it's only supposed to help kill off cancer cells and/or alleviate side effects during chemo? I'm not sure if it's supposed to help post-chemo. Actually I had been on a weekly fast for at least a year prior to diagnosis so I don't think it helps prevent cancer..
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Tigerlily - So far, so good on the tamoxifen. I have ongoing fatigue, but I suspect that's still recovering from chemo.
Brink - There's some evidence that nightly fasting can help with reducing recurrence risk. The IF and tumor data is mostly in mice, but there's also a study that shows a difference between women who fast more than 13 hours versus under 3 hours. I've read recommendations varying from 13 hours to 16, so I'm playing around within that range to see what I can tolerate. The study is: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC49827...
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Oh Sheri, that’s such shit. I’m so sorry. But glad you had a good talk with your mom and that she is supportive and there for you. And awesome that you are back doing the exercise you love. I can’t believe you go at 4:15am!! Please keep us posted as you go. Bone ets seem totally beatable and Ibrance is a great plan. It’s one of the new CDK4/6 inhibitors that is revolutionising HR+ BC treatment.
Sending lots of love xx
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hi All-
Just slogging through the end here. Taxol #11 on Wednesday and I am counting down the days until it’s over and I hopefully feel “normal” again. Minor fingertip weirdness (nail bed pain and just a feeling of them being off, not numb or tingling but just not normal), fatigue/malaise, occasional joint aches. Hair is growing, eyebrows and lashes are nearly gone, still not sure what color this hair is coming in as-perhaps a mousy blonde/brown?
What’s next? Appointment with RO in early February, trip to Mexico in mid-February (barring any border ridiculousness from our idiot-in-chief) and then daily radiation for March-April.
I have lots of questions re:OS and HT for my 1/30 MO appt. As well as clinical trial questions. At this point I’m looking at SURMOUNT/CLEVER http://cancerres.aacrjournals.org/content/78/4_Supplement/OT2-07-09 . I haven’t been spending much time researching lately. Just struggling to live life during these last couple weeks of treatment
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wanderweg - Wow, learning something new everyday. If I follow this fasting diet I'm sure I'll get enough sleep since that would be the only way for me to fast that long everyday... sleep through every morning!
Beeline - How's your new job going?
And for everyone, here's a chinchilla eating an almond.
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Hi all.
Just enjoying Taxol #11. Lovely staff, and the view is quite nice. But I won’t miss it 😂 Just trying to think of an appropriate treat to bring the staff next week. I was thinking of making a cake, but not sure if I would actually get around to it! What have others done?
Here’s the view
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SuefromSydney - That is a nice view! All I see are buildings here in Boston.
Interestingly my surgery pathology now says my tumor was 30% ER+ so I suppose hormone therapy would be recommended when I see my MO next week. If chemo has knocked me into permanent menopause (I’m 41), I suppose I can take Tamoxifen without any uterine cancer risk?
Also at about 8 weeks PFC, my eyelashes are coming back! Hope I won’t lose them multiple times like many others have said...
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Brink - good news about the ER+. Not that I wish hormones blockers on you, but I know I like knowing there is something I can do to help prevent recurrence longer term. I think our periods can come back even after chemopause which is why they often prescribe OS. It probably it depends on testing hormone levels.
Thank you for asking about my new job. So far so good, though I have been so so tired this week. I’m hoping that’s just because I’m getting used to being back at work after a month off as I am only on Taxol #6 (halfway through!!). In the end I decided to go with what little returning hair I have. Maybe because I interviewed with a buzzcut before it all fell out, no one has said anything or even given me any curious looks. Though it could also just be because I work with a bunch of engineers and they are not known for being the most socially adept! I do wish my ID and website photos weren’t of me virtually bald, but oh well. I am still standing and pretty pleased about that.
Congrats to everyone nearing the end of the line with Taxol. And thank you for those sharing their early endocrine therapy experiences. That will be coming up for me though I don’t know if it will be before or after rads in April. Sigh. It is a slog, isn’t it!!
Sending happy thoughts and lots of energy to everyone xx
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Hello,
I thought I’d drop back in and say hi. I finished my Taxol three weeks ago today. It’s good to be done with chemo, but it’s not done with me yet, that is for sure. I do have some lingering neuropathy in my feet and the tops of my fingernails. But sometimes my feet feel like bricks. Doesn’t help that the weather here is cold cold snow snow cold cold. I had some swelling in my legs, they did a Doppler but there are no blood clot’s which is great. The compression socks combined with the very very thin skin on my feet and the neuropathy are hellish. Anyone else having lingering affects? I’m still very fatigued. I’m powering through as much as I can at work, but I’m weary, so weary
Went to a different heart surgeon and he told me that we can just monitor my ascending thoracic aneurysm for now. That kicked the radiation to the front of the line. I will be starting that for 28 treatments +5 boosters a week from Monday.
That’s all I got ladies, except I want to extend a big thank you to all of you here. Your attention, compassion, and answers were so comforting. I honestly came to value them much more overtime than the evasiveness I got from my healthcare providers.
I will pop back in from time to time and will definitely join the January radiation thread.
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beeline - My thoughts exactly. I’m glad to be ER+ enough for hormone blockers to make a difference. Since I also have family history of ovarian cancer hopefully these can prevent that too.
Glad to hear your new job is going well! I agree about working with a bunch of engineers. I actually feel better when people treat me as if nothing’s going on so it’s all good. I did feel more tired towards the end of Taxols too. Hope your new job is not too taxing.
M-and-M37 - At 2 months after my final Taxol my fingers are still slightly numb, with occasional pain in my thumbs. I think it is slowly getting better but will probably take months. It’s still a bit harder for me to tie my daughter’s hair but at least I can do it. Not that I was great at it before anyway...
BeingPositive - Hope your BMX goes well!
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Brink, thank you. I'm getting nervous now about tomorrow's surgery. As it has been more than a month after my last infusion, had started feeling like getting back to normal. But now this big surgery is making me worried. Keeping fingers crossed. Good to know that your eyelashes are coming back and that the finger numbness is getting better. Yes, even I think that the treatment each one of us has selected keeps us miles and miles away from facing this again.
Beeline, glad that your new job is going well. I hope you can change website and id photo later, if you feel like it then.
M-andm, sorry about neuropathy issues. Hope those go away soon. But I too had muscle fatigue, heavy legs for 4-5 weeks PFC. Best wishes for radiation.
Peace and strength to all.
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Beeline - I'm glad the new job is going well. I'm about ready to go topless with my work. It's actually the cold that's getting in the way of that more than the lack of hair.
M&M - I had leaden thighs for more than a month after I finished chemo. It's so much better now (11 weeks PFC). I am not 100% but I definitely have more energy than I did.
BeingPositive - So BMX tomorrow? Sending lots of love your way!
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Being - good luck today on your surgery! I have never been as scared in my life as I was before mine, but it all went fine and I’m sure yours will, too!
MandM - congrats on finishing chemo! I can’t believe I have 6 weeks left to slog through. Good luck starting radiation. Do come back and let us know how it’s going.
Wanderweg - thank you! Have you worked all the way through? If so, I am super impressed. I’m glad I’ve gone topless, though I am still surprised every time I pass a mirror or reflective surface!
Well, my new job wants me to go to Japan in March! So I think it’s safe to say they don’t even suspect I am in active treatment for BC. I would LOVE to go especially as the centre director and program manager are from Tokyo. And it would fall in my month off between chemo and rads... I am probably crazy for thinking it might work, but maybe it might work??!
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beeline - Wow, that is great! Is there much of a time difference between NZ and Japan? If not you shouldn’t have too much of a jetlag. I did get sick once towards the end of Taxol because I didn’t sleep well one night, so hope you can maintain good sleep! I suppose you should check with your MO? Honestly Japan is like one of the cleanest countries in the world, with so many people wearing masks on a daily basis.
I finally got a flu shot earlier this week. Hope it will fend off any viruses headed my way the rest of this winter! My white blood cell count is still lower than my norm.
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Ladies, you are an impressive bunch!
Piksie, I still can't believe you went on a date. I'm single, too, but I haven't been brave enough to even try to go to an online dating site. Wanderweg, I want to congratulate you on your hair. It's longer than mine, and unlike mine, it actually shows up. Mine seems to be coming in very, very blond or white...and it's kind of like little feathers, some longer than others. I'm also very impressed with Tiger's hair! I don't have anywhere near that much. Brink, I have to thank you for the chinchilla picture! I laughed myself off of this chair! And Beeline, congrats on the job....That sounds like a helluva job!
I'm hanging in here. I started back to work, halftime only (at my ONC's insistence). He was right .... I'm just exhausted every night when I get home, and I'm finding it very hard to keep to my partial work hours, because there is so much backlog of work to do after being out for months. I'm also surprised by all the SEs I'm having. I'm off chemo and now just on 2 monoclonal antibodies: Herceptin and Perjeta, both of which I've been taking with chemo. I had my first dose of them without chemo the middle of last week and was suddenly hit with diarrhea, gut pain, back pain (BAD back pain), fatigue, and the running nose/eyes. I've had these symptoms before, but now they're more intense, particularly the back pain. It hurts enough for me to actually take the pain meds he gave me, which do make life more livable, but I don't like the way they make me feel. It makes me think about bone mets, which isn't a pleasant thought. Up until now, I really haven't had diarrhea, but now....I'm afraid to go anywhere, although I have to go teach, of course! I have an appointment with Onc on 1/30, so I'll ask him about these symptoms then. I'm hoping they go away on their own. Have any of you had SEs on these drugs???
Hoping you all feel as good as possible... Being, I'm praying for you as you recover from surgery!!!
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beeline - I took a month off after my BMX, another week or so after my reconstruction, and then took a week off after each round of chemo. So I did keep working, but not consistently. The Japan opportunity sounds great if you're feeling up to it. That's amazing they don't realize your in treatment.
Brink - I got my first ever flu shot this fall, right before I started chemo. My PCP pointed out to me that my immune system wasn't going to be getting any stronger for a while.
Fairchild - My hair was very pale at first and then suddenly darkened up. I'm so sorry about all the bad side effects with the Herceptin and Perjeta. I thought those were supposed to be easier but it sure doesn't sound like it.
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wanderweg - I’ve been getting flu shots every year but missed the window this year. At least I’m caught up now and didn’t get a flu yet!
I’m scheduled to meet my MO next week and found out she didn’t order any tumor genomic tests from surgery samples Do I need one? Since I’m only weakly ER positive oncotype test might not be very useful.
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Brink - I think the purpose of tests like the oncotype are mostly to determine whether you need chemo. Since you've already done chemo, maybe that's why testing wasn't ordered? I'd ask the MO just to be sure.
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