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hap - Under the staging criteria for the time you and I were diagnosed, Stage III is divided into three categories, Stage IIIA, B & C. IIIA and below is considered “early stage", B and C can involve breast muscle or skin, or collarbone lymph nodes, or more than 10 axillary lymph nodes, and is considered advanced. Stage IV involves spread outside the loco-regional breast area - involving distant metastasis.
On the subject of ports - I kept mine for 6 years. Would have kept it forever, it was subclavian but so small it did not show. My MO, who requested it stay for two years after completion of Herceptin, as that is the most common recurrence window, finally said it should be removed.
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Here is my port. I am betting I will never need it again.
Vicky
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HapB it is irresponsible to share percentages without a source that states them. Show your proof of 15% or don't make the claim. People are going to take your number as fact when you probably just made it up. Saying something like that can cause someone to refuse taxotere or refuse treatment. Is that what you're trying to convince people of?
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I had taxotere in my chemo, my first oncologist told us that the taxol regimen was old and not as effective so it isn't used much anymore ( imagine my dismay when I read on tne boards I joined tnat 90% of people were getting taxol 😣), but yes I was told about tne SE of maybe losing my hair permanently. I was also told tnat untreated this cancer would kill me. I have 3 good friendswho have had alopicia since they were teenagers, because of some immune disorder, and all live completely normal lives. Millions of men live without hair and do just fine.
My SE that I hate the most and was not warned about is my hearing loss. I have lost about 30% but they say like the neuropathy in my numb feet, just give it time. BTW I fired my oncologist as soon as I was done with my 6 rounds.
My hair is slow growing and thin on top but thick on the sides. Hopefully it will be long enough soon to cover the thinner areas.
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None of these are sources that even state what you're claiming and you're specifically searching trying to find ones that back up your claims.
First we'll address this link: http://injury.findlaw.com/product-liability/taxotere-hair-loss-lawsuits.html
1. Not a reliable website source
2.You didn't read the study you linked because the aheadofourtime one (that's also linked at findlaw) says:
"The relatively recent description of this side- effect could be linked to the fairly recent validation of taxane- based adjuvant breast cancer therapy, which was introduced in France in 2005. The conjunction of taxane-based treatment with a population having a good prognosis, thereby allowing for a long follow-up without chemotherapy, could perhaps explain this new cutaneous side-effect. In addition, the relatively low incidence of this side-effect may have delayed its description. Approximately 1000 patients affected by early breast cancer were treated with this type of sequential, anthracycline- and taxane-based adjuvant or neoadjuvant chemotherapy in our institution during the accrual period. It could thus be roughly estimated that the incidence of this side- effect in this patient population is ∼2%. However, biases like losses to follow-up or underreporting of the side-effect are possible."
3. Link they provide to 2014 study is broken and therefore invalid as a source.
4. New England Journal of medicine they claim only lists rates of alopecia DURING treatment.
Your other link is only showing that taxotere/docetaxol can cause hair loss. We know that. I asked for facts to back up your 15%. You're further being irresponsible by acting like you have the studies to back up that number because none of these show that and not everyone is going to follow all the links to realize that your information is false.
The link where you say incidence is not tracked. It specifically says:
"Alopecia persisting into the follow-up period after the end of chemotherapy was reported in 687 TAC patients and 645 FAC patients. At the end of the follow-up period, alopecia was observed to be on-going in 29 TAC patients (4.2%) and 16 FAC patients (2.4%)."
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You can not and have not shown anyone estimates 10-15%. The links are saying numbers other than what you claim. You are lying and misleading people. None of this is a personal attack. I merely want you to stop sharing false information in a thread where people come to find information. People will treat what you say as fact and it's not fair to those people to let you lie to them.
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Hi JVP, I don’t think Hapb is intending to lie, and has probably found this figure in the literature at some point. I do think we need to pay attention to facts we quote, but I do agree that it’s hard to completely determine one exact and accurate stat. So a range is the best we can hope for.
A personal attack is not when we debate or disagree, but an accusation of lying would constitute a personal attack.
I’m sitting in front of the ocean right now with the palest skin on the beach lol! Seriously. But it’s so pretty!!!
Question...do any of you ever notice itching on your operated areas even over a year out? I’ve had itching this week near my incision, between breast and armpit...
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Dear Friends - I just wanted let you know I've finished Chemo Tuesday and rang that bell Hard! I used to love coming to this site and lately its become a battle ground. SO, farewell my dear friends, you really helped me and I appreciate you thoughts and kind words and support for me. Thanks and take care.
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rljes -- congrats on finishing chemo! We bet that bell-ring felt really, really good!
We're so happy we could all be here to support you during your chemo journey, and we look forward to supporting you in the future. We're sorry the recent turn of the thread has discouraged you from continuing to post on this thread, but we hope you'll continue sharing your story throughout the rest of our many, many discussion board forums.
--The Mods
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Thanks, Taco1946. The port hurts a tiny bit today, but not too bad. It seems to be healing well. Yes, I have about 2 weeks to rest before chemo starts.
My big stress is...I am limited to 25 hours of work per week during chemo, per my doctor, and at that rate...I will run out of leave COMPLETELY (sick and vacation) by around the 13th week. I'm the primary breadwinner, and the insurance is through my job. If I explain to the oncologist that I need to complete chemo in roughly 13 weeks, is he going to work with me?? A 12 week regimen would be fine, once a week. THAT I can work with. But no paycheck and no new leave coming in--that's a huge problem. My FMLA will end at 12 weeks--it is taken at the same time as sick and annual leave to cover illness. This is my biggest fear right now. I see a lot of people DO finish chemo in 12 weeks--but others take it once every 3 weeks for like 36 weeks?!? That would be devastating to our family.
I know it's easy to say, "You have to just ignore work and do what's best for you," but ignoring my job would mean financial devastation to us, and our son who is starting college this fall. Long story short--I want the treatment (and I can work and do radiation and the rest of herceptin without taking leave time--I can work it into a lunch break or whatever). But I can't run out of all my leave because then I could be out of a job.
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Friendly reminder to all on this thread:
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Thank you and those of you who continue to post respectfully here, we apologize for this blip in your conversations. Please proceed and we hope this thread gets back on track now.
--The Mods
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astyanax66--- is there some particular reason the doctor is limiting your work time during chemo? you may have already said and I just missed it. lots of folks work full time during chemo and do okay. I know I did, but I have a desk job and I'm not in a high stress situation. I was lucky that I didn't have any major side effects either, just tired some days. I can completely understand your worry, luckily I had medical and personal time built up that I used when I needed it. I hope the doctors will work with you. that would definitely be one less stress on you. good luck.
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astyanax66,
I'm with tadover. I worked through chemo, too. Have you explained your financial situation to your doctor? My doctor never tried to limit my work hours.
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rljes,
Yay! So happy you have finished!!! What a great feeling
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astya do you not qualify for short term disability? If your doc wants to limit your work, that might be the better option? I worked Monday through Friday 7 to 4 and then took 4 hours of FMLA on fridays, my infusion day. So I worked almost full time. But it might be better to explore std versus all that unpaid time.
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can you set an appointment with your Human Resources department to explain your situation? Perhaps they can come up with a way to work with you. A company I know of allowed employees to donate a specific number of their sick/vacation days to a woman undergoing chemotherapy. They received some very good publicity for their generosity. Once you know how you will react to the chemo regime the idea of trying to just take Fridays off might be a viable option. Sending prayers your way
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astyanax66 - sorry that a treatment plan is looking hard for you. I too would recommend that you talk to your HR person and your MO. You are the first person who has mentioned the work restriction by an MO. STD sounds like a possibility although I imagine it's at reduced pay. It's my understanding that FML means you get to take time off - not that you can use up your vacation time. Beyond that, I'd say it depends on your chemo regime. Taxol is usually given weekly for 12 weeks. If you do it on Friday, you probably will feel up to working on Monday, at least in the beginning. Once you are only getting Herceptin it is every 3 weeks and you can do it late in the day or first thing in the morning - mine only took 30 minutes - a little over an hour total with a blood draw and quick visit with MO. I personally had no SEs from the herceptin alone. Good luck working this out.
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astyanax66 - My sympathies for the stress you are feeling re potentially reduced income/job security. Another recommendation that you follow up with both your MO and HR director to see what you can work out. Many people do manage to work full-time, or very nearly so, through their chemo.
Your profile doesn't indicate where you live, but a few states provide SDI - State Disability Insurance. My office also allows employees to apply for a Catastrophic Illness Program whereby fellow employees are able to donate their sick and/or vacation time to those who have used up all of theirs, as someone else mentioned above.
Please report back and let us know how you are doing.
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astyanax66 - My sympathies for the stress you are feeling re potentially reduced income/job security. Another recommendation that you follow up with both your MO and HR director to see what you can work out. Many people do manage to work full-time, or very nearly so, through their chemo.
Your profile doesn't indicate where you live, but a few states provide SDI - State Disability Insurance. My office also allows employees to apply for a Catastrophic Illness Program whereby fellow employees are able to donate their sick and/or vacation time to those who have used up all of theirs, as someone else mentioned above.
Please report back and let us know how you are doing.
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hello Ladies,
Wow, I think we all need a few beautiful spring days with warmth and sunshine, as winter and gloomy weather has built up some tension...
astyanax66, I am self employed, so it was a bit easier for me, however, partly my work is quite physical. I managed to work as much as if I had no problems at all... Nobody knew I am doing chemo, or rads... I first got EC, 3 times in every 3 weeks. So for two days after EC I slept a lot, tried to rest as much as I can. By the third or 4th day I was okay enough to go and do the shoots or do a few hours of editing.
With taxol (3 times, every three weeks) it was a bit different. The day after the treatment I was supergirl: doing a lot, cleaning the whole house, cooking, walking... thanks to a little dose of steroids they gave with taxol. I had my treatment on a Tuesday, and by Thursday, the pain started. So if I were in your shoes, I would take a Thursday off for taxol, then work on Friday, and rest during the weekend. But again, it's just how my body reacted.
Rads were harder for me. I was sleepy all the time, and just the fact that it was every effin day... I lived an hour from the center, so one hour going there, one hour in there, an hour going home and then an hour nap-time.
Couldn't you get Herceptin as an injection? That's how I get mine, it's 5 minutes and I'm done. (2 more to go Oh, Herceptin alone allows me to do anything I want. I know that it is still treatment, and my pills will be with me for a long time too, but honestly, when I finished rads, it felt like treatment is over. This Herceptin injection is no trouble at all. I wonder why it is not used more like this.
Hope I could help, and please talk to HR. I'm sure you will figure it out. Hugs to you, and all you wonderful ladies!
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photogirl - if astyanax is in the US, Herceptin is only given as an infusion. The injectable version is not yet FDA approved here, but it is being used in other parts of the world. Hope it will eventually become available here too - this is much like Neulasta, many of us had to go back to the infusion center for the injection 24 hours after chemo, now it is available as an on-body injection that automatically injects on a timer at home. Progress!
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Not sure what "sh$t storm" I missed with all the deleted posts...most of the time I find them interesting, whether I agree or not. Anyhoooo, I Had my annual mammo which always makes me a little crazy beforehand... Afterwards, instead of telling me I was good to go, I was told, "We will be doing a bilateral ultrasound now. Never had a tech do that before and I started to worry. They u/s'ed all my lymph nodes and then told me all was great. What a relief! Why didn't they just say that this was done routinely at that center instead of scaring me like that??? I'm happily not due back for a year. Yeah
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Hey, all, thank you for the excellent details and questions to ask. I think part of the hour restriction was maybe something I said...so, a little background. (Looooong—sorry). I’m a professor of history and associate dean of teaching and learning at a small state college here in Georgia. That fancy mouthful means I run our distance ed programs, coordinate faculty professional development, attend a gazillion meetings, and on happy days, teach 1-3 classes online. Teaching is a great pleasure. My students have been so kind, We recently switched Vice Presidents, and my fairly pleasant 50 hours a week jumped to like 60/70 (I don’t punch a clock—the work gets done, hours are long, that’s life). To further complicate matters, we are in a rural area—treatment is an hour north of home, work is an hour south. So, my nurse navigator and surgeon oncologist suggested that a letter stipulating a specific number of hours per week would keep the boss from heaping on work (seriously, y’all, she had me on a phone meeting less than 48 hours after my lumpectomy—my throat was a mess from entubation, not to mention haziness from meds). And it would also help limit so much driving if my doctor specified the work would all be done from home. I agreed—her suggestion was to try 25 hours of work from home, 15 hours sick leave per week of treatment. Much of what I do is work online or via Skype or phone, so working from home or calling in isn’t hard to work out. For college accreditation, I have to be online a certain number of hours each week per course (just one in summer, but 2 in spring, and our semester ends in late April.)
But, I’m not a math professor, lol. I didn’t do a good job counting before saying yes to the 25/15 plan. I have 65 hours of sick leave and 135 hours of annual leave. I visited HR today. They were fine with it, but the boss has to sign off, and she hasn’t. I finally did sit down and crunch numbers. So, I’ve got 200 hours starting this trek, though I continue to accrue one sick day and 1.5 annual leave days each month. HR said just to report weekly to them how much sick time I used in a given week (I.e. some weeks might be 23 hours of work and 17 sick, etc.) and they’d track it. I have to factor in 2 hours driving (an hour there, an hour back) on treatment days.
HR said that FMLA starts with the first sick leave hours—it’s concurrent since I have a “serious illness under a doctor’s supervision.” But that does protect my job. If I did the math right, FMLA covers 12 x 40 or 480 hours. I do have short term disability, but it only kicks in after all sick leave and annual leave has been exhausted.
I think my doctor thought I may have side effects with treatment such that the 25/15 split would be healthier for me. However, sounds like a lot of you did pretty well just taking 1 sick day per week. So, maybe what I can do is this (inspired by your suggestions): get through my first couple treatments and see how it goes. Maybe a 30/10 split, conserving much more leave time, will work fine, especially since I’ll be at home anyway. The doctor would just have to file a new letter with HR to get the hours changed. I think she’d do that.
My onco appt is not until March 27. If I read right, 12 weeks of taxol is standard, and that’s usually once a week, but some people take an AC regimen first?? Ugh. That sounded rough.
Photo girl, yes, I am in the US. Wish we could do the Herceptin shots—that would be great!!
I sure did not expect to have to worry about chemo—the original plan was lumpectomy and radiation. Pathology dictated otherwise, sigh. But again, thank you so much for the new ideas. I think we can make this work, and I feel confident my nn and so will work with me to maybe switch the hours around as long as all is well.
Congrats to all who are finishing their treatments! It must be amazing,
Dee
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Vicky, that is an awesome picture!!! I want that when I’m done
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Blownaway...super yay. Glad to hear your mammo was clear.
Well, expanders are gone!!!! I feel a lot better already. Have some pain under right breast rib area. Will ask tomorrow at post op tomorrow morning if that is normal. PS also said to my mom that the skin is thin. Not exactly sure what that means. Anyone else know?
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astya - did you check the std policy with your HR rep? I only ask because usually std kicks in on your 7th day out of the office. If you went that route you wouldn't work at all, but that might mess up your accreditation.
I will tell you that towards the end (weeks 11 and 12), I had to take the Monday after my Friday infusion off. Day three was my worst symptom day. If I were doing it over, i would infuse on Thursday and have my "crap" day be Sunday. I work in HR so PM me if you need help figuring out your leave policy. But working through chemo is usually doable. I had a 2yo and an 8yo to care for on top! Hugs...
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Posey, yes! The itching a year later is so annoying. Previous surgical scars have done that to me especially on rainy days. Good news is that it is short lived.
Vicky...omg, I am so doing that upon deportation lol.
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Dee,
OK, I see where you're coming from. I'm a political science professor at a mid-ranked R1 university, and I'm Director of Undergraduate Studies for 425 majors, over 100 minors. I belong to a number of dreary curriculum committees (no course descriptions over 60 words or else). I did teach full-time through chemo and radiation, but I'm blessed with a 2-2 teaching load. Also, I did work at home a lot, and the chair of my department relieved me of some of my committee duties. So, I can't say I worked my usual load; I wasn't as big a chemo hero as I might have led you to believe.
So, I totally get why you might want to reduce your load. What's with your boss? I guess I was lucky that my chair was cool with my request for reduced responsibilities, and one of my colleagues stepped up to substitute for me.
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Hi y'all,
where did everyone go?
come back at once
cause here I am:
the LaughingGull!
**************
(that was a poem)
Wow it indeed looks like there has been a "sh*t storm" here!
To Blownaway: congratulations on your good news!
Please forgive me if I am not up to date, my dear wise cancer ladies and supportive cancer guardian angels. I haven't been much around here, due to a successful vacation in the Caribbean (yay!) in between two rounds of Taxotere+Perjeta+Herceptin, plus busy with work deadlines and life in general, and there wasn't much going on with my stuff, just round after round of T+P+H which for me has had few and mild side effects in any case. I did check in a couple weeks back, and saw there were disagreements about promoting lifestyle and diet changes to help with cancer. I have to say, there is no way I am going to make any lifestyle and diet changes to help my cancer because...my lifestlyle and diet were beyond healthy and I still got this freaking cancer! If I had to think of a change to make in my pre-cancer life honestly don't know which one it will be, since I covered all bases: plant based diet since forever (grew up in a Mediterranean country)...check!, no smoking...check!, exercising intensely and regularly...check!, mental health and avoiding of stress...check!, healthy weight...check!, supportive friends and family....check!, healthy blood pressure....check!, low cholesterol...check!, positive outlook in life...check!, fulfilling job...check!, getting enough sleep...check!, had babies...check!, breastfeed said babies long term....check!, any health screening in the history of preventive medicine...check!, flu shot...check!, you name it:...check!
I will have my last T+H+P next week; and after that, surgery.
I am freaking out about surgery. Freaking out about painful recovery; freaking out about losing my breast (or breasts...dont know yet what the plan is); but above all, freaking out about the very real possibility of learning after surgery that they found lots of cancer cells around, and that I am doomed as a result, with whatever life I have left devoted to wait for the other shoe to drop. I feel like most people in this group caught their cancer in a low stage like zero or one. I am so deeply disappointed with my doctors that my cancer wasn't caught until stage 2b with involvement of lymph nodes, despite observing regular breast screening, first ultrasounds and then mamograms, plus annual exploration for like 20 years.
Therefore: I am back. Need some words of wisdom to bring back my courage: seems it's gone, replaced by a dark, heavy cloud.
Help!
Love and peace
LaughingGull
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And I also worked full time during chemo, both during AC and now T+H+P. My MO encouraged it. Office job though.
Love,
LaughingGull
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