Starting chemo February 2018
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moth-you look great in the wig. I have worn my good wig once and the work wig stays on my car seat. It looks like a dead animal. My hair is definitely growing back. While I was at the dentist office this morning I looked down at my legs and realized I need to shave my legs. Eyelashes and eyebrows are coming back. I have a cracked tooth. I go back to the dentist next week. Time to hit the treadmill.
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CBOK-thanks so much for yOur input! I had a terrible apt with my onc today-we basically came to blows bc she is sick of me questioning everything and gets annoyed when I bring studies and ask for justifications. I finally got her to agree to my estradiol test but it took fighting and she was highly annoyed. I think she’s good but I’m starting to wonder if I can continue to see her. I did have her refer me to Vanderbilt for a second opinion about everything, and I feel much better that I’m going to get someone else to talk to.
Moth-that is SO CUTE on you! Love it!
Found out I’m having a brain scan 9/20 bc I’ve been dizzy/lightheaded and had some headaches. Ugh. Praying it’s going to be perfectly clear!
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moth
Very cute
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colleen- you have every right to question your doctor. It's your health. Every 3 weeks I see my medical oncologist before I receive my herceptin and perjeta. Every 3 weeks I have questions for him and he patiently answers them. Quite frankly, he is proud of the research that's being done and encourages my questions regarding different research studies. The cancer center I attend is very active in cancer research with the NIH. I would most definitely have a problem if my oncologist appear to be annoyed with my question. I don't have a lot of questions but when I do I expect them to be answered.
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Nice! It looks like it belongs on you! I wouldn't know it was a wig.
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jo, quite to my surprise, my onc called me this afternoon. We spoke for quite awhile; she apologized and expressed her empathy for all I am going through. She said she fully trusts the dr I am going to see at vandy, and would do whatever she said. She told me to keep her cell number, and said even if I decided I didn’t want to see her in the clinic anymore that she would be there if I needed anything. I’m thankful that our poor appointment bothered her enough that she felt compelled to reach out
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Oh I'm glad Colleen that your MO reached out. While this whole cancer thing is tough on us, I do also sometimes sit back and look at the MOs and think "geeeeez, some days your job must be really shitty" Maybe she had just had a crappy day or been dealing with a patient who had run out of treatment, or maybe had some very difficult patient. It's a good sign that she realized the appointment didn't go well.
Anyway - hope your 2nd opinion consult is helpful!
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Nice wig Moth! You look great ! I was also wearing a wig for my school photo ID but I am wearing scarves when i teach. My hair is taking a looong time to grow back. I have some in the side but the top is scarce. It is like an old man.
Colleen and CBOK good that you fight for what you think is best for you. I have stopped looking for those studies. I had my surgery 2 days ago and will know the results next Friday. Then I will have to book an appointment for radiation. I have the feeling that I am way behind you all.
Take care everyone
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moth I agree, I’m sure it can be hard on them some days. Thanks!
Lolotte, I understand. It’s overwhelming sometimes and I think after I go to Vanderbilt I will also have to take a break from looking at everything just to save my sanity. I hope your surgery went well
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We certainly have a right to research, question and advocate for ourselves. Doctors should understand and support us, rather than being stuck in their egos.
Moth the wig looks great! Mine are too itchy. I can't stand how they feel so I'm rockin the short hair
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Downdoggie, I couldn't agree more. We didn't ask for this, and doctors are tasked with helping us, so they should to listen to and support us and work with us, we're not just numbers or objects, we're actual people with feelings and needs. I've already switched my MO once because the one I was seeing originally was an arrogant jerk who refused to listen to me and liked to talk down to me (he made me feel like I was about an inch tall), but the new one isn't much better. If I go to an appointment with a legitimate concern or a question that has come from my own research, she won't even entertain it, and she gets downright snarky and dismissive if I push back against something, even if I'm going on the advice of another doctor (and not just something that I discovered myself) - is it that much of a threat to their egos to be questioned by the people they're inflicting their demands on?? I don't understand why it's such a chore for them to just listen and work with us, they're not the one being treated for a serious illness, they're not the ones suffering from the effects of treatment or living in fear. It's exhausting having to see her, it's a fight every time and she never backs down so I'm never heard, my concerns are never addressed, my questions are never properly answered - it's like they just want patients to smile and nod and do what they're told, and it should never be like that.
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moth- your wig looks beautiful.
Colleen- hopefully your second opinion will bring you more confidence in your treatment plan. The more research we do, the more questions we have. It's yourlife and I'm glad your onc reached out to you. We should expect to have all of our questions answered. In the middle of my chemo, I got a second opinion on my treatment plan. My surgeon and MO are affiliated with different hospitals, and with everything happening so fast from diagnosis to surgery and chemo, I wanted someone unaffiliated with either hospital to take a fresh look at my case. It really helped.
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hi everyone, my BS called today and the result of the lumpectomy is negative. No cancer anymore. My scar from the node biopsy is painful but I don't feel the one on my breast.
I still have to do radiation but I don't understand why as I don't have cancer anymore. It would be just so much convenient not to have to go everyday some places...
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Lolotte - great news about the pathology results! I was just saying to someone on another thread that radiation is the 'price' we pay for having a smaller, less invasive surgery. While all the tumor is gone, it doesn't mean that there aren't small cells somewhere & without a full mastectomy, we'd be at higher risk of recurrence. There's a calculator which predicts the benefit of radiation. https://www.tuftsmedicalcenter.org/ibtr/
It is weird though when I think about it too long. If I've had chemo hasn't it killed everything already? I mean it's supposed to work in the whole body... But I guess this is just targeting any stray cells in the area where they're most likely to be found if they did escape. Fwiw, so far I'm finding rads pretty simple. The appointments are super fast and other than having to slop on tons of cream (which makes dressing kind of odd because I don't want to wreck all my clothes so I keep doing laundry over and over and wearing mostly the same tops...) it's been ok.
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colleen- it's refreshing when an adult admits they made a mistake and tries to correct the issue. Even more so, with a MO. Im glad for you.
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rockcity, I’m glad your second opinion helped! I really hope mine will offer some reassurance and optimism, as I’m having such a hard time kicking negative vibes lately.
Lolotte, so glad you got good news! The way my dr explained radiation to me was even if they got all the cancer, there’s always a chance there could be escaped single cells roving around that were impossible to catch-the radiation can come in and zap any remaining cells that may have escaped unnoticed.
Jo-thanks! I was glad too.
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morning ladies
Hope everyone had a relaxing labor day weekend. Today I'm going to see my MO for the first follow up after chemo. A little nervous about it. Hope all goes well. Will check back later! 🙏☺
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ButteflyLily - hope your appointment went well!
Downdoggie - I know what you mean about the itchies. Yesterday I had a really long day and by hour 10 of wearing it, it was driving me nuts and I had to yank it off. It itches my scalp and my ears and my neck and then I just feel all itchy all over lol. Soon I'm probably just going to start alternating between bio hair & wig, and wearing it only for fun on shorter days.
Made it through first week of school - I don't have classes on Fridays & with the Mon stat it was a short but full week, and all the driving to rads is a huge time suck each day. Only 3 more rads to go - so glad the end is in sight.0 -
Hi all,
Hope you are all doing well as you transition from active treatment to anti hormone therapy and/or recovery.
I had a very confusing conversation with my MO yesterday. 1 month ago I was given the option between tamoxifen or ovarian suppression with AI. Although chemotherapy put me in menopause my MO says I'm still considered premenopausal, therefore I need ovarian suppression if I use AI. My MO suggested I try AI first because it is more effective by about 5-8 percent. Then yesterday my MO's fellow casually says I'm not that high risk so if I want just tamoxifen there is little difference and I can use a switch strategy to use AI later. Then he talks with my MO, and returns to say take the AI, it gives you a slight edge and your MO doesn't want to do a switch strategy. I was so rattled I didn't ask to speak directly to my MO.
Then I did some reading: soft and text trials say young (35), high risk patients that remain premenopausal after chemo get the most benefit from ovarian suppression. I didn't remain premenopausal after chemo so I'm not sure these studies help me decide if ovarian suppression is a benefit. Maybe my periods will return over the next 5 years, and it will be clear that it is a benefit. However if I've already entered into menopause then do I actually benefit from ovarian suppression?
I would love to hear what other chemopause patients are being advised to do 1) tamoxifen alone, or 2) AI with ovarian suppression.
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I have a question for those who finished taxol months or years ago....did you smell the chemo on yourself while going thru treatment? And when did it go away foryou? I feel like it’s in my nose or sinuses, but if I’m out in the heat and my head or face sweat I feel like it’s coming thru my pores...so ready for this odor to go away!
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Hi everyone. Finished my rads on August 30th. Was pretty easy (especially compared to chemo!). My breast was a little itchy for a few days after the boosts but nothing extreme. Just kept moisturizing the whole time.
Walden- I also went into chemopause about a month and a half into chemo and remain (I'm 45). My MO has put me on Tamoxifen which I just started yesterday...they told me to wait a bit after rads were done before starting.
Calee65-sorry, I never experienced the chemo smell. I know chemo can mess with your senses of taste and smell though so it makes sense that you're experiencing that. All I can say is that even just a couple of months after chemo, most (if not all) side effects seem to end.
Hair is coming in steadily. Came in grey and dark brown (but mostly grey). Hubby keeps trying to convince me to go grey but I find it ages me..would like to dye it a platinum blonde with a really short buz cut but for now I still wear my wig. Eyebrows and eyelashes are both fully back too!
Hope everyone is doing great and enjoying their weekends!
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Yes I definitely noticed a smell that really bothered me during chemo and for sometime after. I went into chemopause and had lots of night sweats and hot flashes, so showering only got rid of it for a short period. I would have sworn that it was the same smell as the drug. When I asked the chemo nurse she said it’s not possible to smell the drug during administration, so who knows. Good news is it went away a few weeks after chemo about the time the night sweats stopped
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Moth, your wig looks great!
I have a question about eyelashes. Mine came back to their pre chemo appearance, but 5 months after chemo the longer lashes fell off and now they are jus a few millimeters long. This was a month after starting ovarian suppression (zoladex).
Anyone else experience this, and did your eyelashes eventually get back to pretreatment appearance?
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Walden - I read on a thread a while ago that the issue with lashes and brows is that they grow in and they are all in the same hair cycle, so then a few months later they shed all at the same time. As time goes by, you'll get regrowth with increasingly staggered hair cycles so they don't all fall out & regrow at the same time.
thx for the compliments
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Moth- thanks for the information on the eyelashes. My eyelashes started growing back 6 weeks post chemo. I noticed yesterday they were falling out again. My hair is growing everywhere else. My hair is mostly gray with some silver. As soon as it's feasible I'm getting rid of the gray. Right now it doesn't matter because I still wear my beanies.
Low energy level due to an allergy. I Ran a 5K Saturday morning. No issues. I have another 5K scheduled for next Saturday evening. It's a 5k to honor our heroes in law enforcement and the military.
I'm hoping all of you heal quickly, have minimal or no side effects from your treatment and celebrate a beautiful day.
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Jo6359-well done on the run!
I'm training for the "run for the cure" here in Vancouver at the end of September. It's been about 20 years since I last tried running a 5k, so it might be more of a walk for me
In any case the exercise makes me feel great! I always found it funny that cancer patients are advised to treat fatigue with exercise, but I guess there is something to it. So far I've raised $1000 in donations for cancer research and treatment!0 -
walden- Our run for the Cure walks is in 4 weeks. Good job on raising a lot of money. Whether you run or walk the important thing is you enjoy the activity. You have inspired me just to start working on my fundraising. Keep up the good work
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Hi ladies - my MO emailed me Friday to say labs were lovely and everything looked great. I guess i'll be doing blood work every 6 months when i go to see my MO. Is everyone else doing that? And i didn't ask her but should have. Can they tell by the blood work if anything is going inside..i've heard something about tumor markers but my understanding is very limited..if anyone knows, I'd love to learn more..
Many hugs to all of you!
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butterflylily-congrats on your labs.
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I have a question? This afternoon I noticed I was experiencing double vision while trying to read. I've never had this issue in the past. I'm almost 3 months post chemo. I'm still receiving herceptin and perjeta. I see my surgical oncologist tomorrow for a final discharge. I see my medical oncologist on Friday prior to my herceptin and perjeta infusion. If any of you have any knowledge on this subject I would greatly appreciate it.
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