Starting Chemo, November 2013 Group
Comments
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Amazon, yes I'm just stage 1. However the nasty sucker is grade 3. I did both oncotype and mammaprint tests. The oncotype came back high intermediate, a 27, almost to the high risk level. So I had the mammaprint test run: it came back high risk of metastasis. That made chemo a no brainer, unfortunately. I had a lumpectomy instead of a mastectomy, so I have to have rads. Since I had rads during my surgery I "only" have to have 20. So, 4 weeks of radiation and I'm done!
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Pat and all mothers of depressed sons,
Oh my! I read your self sacrifice of caring for your son in college and I wanted to weap. We are moms for life, you know? Our sons did not leave the home area for college but the youngest had such a hard time. Seemingly girlfriend problems, but my bone mets were diagnosed the day before his football practice and move in day began. The Lord has allowed me to see him happily married now, in nursing school, with 2 jobs and loving life. While I am receiving treatment, facing my own immortality, I will love and support my sons every day this side of heaven, and on.
Anita
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Pat, do you regret having lumpectomy instead of mastectomy? I had a lumpectomy in December . My margins were not clear as they found previously undiagnosed dcis. I had a reexcision on jan 7. Im kind of second guessing myself now. If id just had a mastectomy, it would all be gone! I had a suspicious spot in my right breast which was bx under mri and was benign, but in light of the fact that They found dcis in the left which wasnt picked up by mammo, ultrasound, mri or bx, I have no faith that the right is truly benign. I return on jan 13 for the pathology of the reexcision. Heres hoping the margin is clear this time. The thing that is the most difficult for me to deal with, is that NOTHING with this bc has been as originally thought. For example... initially, I was told I had a run of the mill early bc. After surgery I had 4 nodes involved which ratcheted me up to a stage 3a. Wtf!! I feel so healthy. I meet with the oncologist, who btw, said he could cure me when I was a presumed stage 1 or 2. Im petrified. Im dreading the pet scan they are going to order. Every ache and pain is scarIng me. Im not a nervous nelly and im not one to usually see the worst but his is just too much!! im starting to get the "if onlys"....if only I went to the gyn wheni was due instead of waiting 6 extra months, if only I had my mammo when ordered instead of waiting 6 months, if only I had a mastectomy when the right side had a suspicious spot... it really could make a person crazy.
I have an 8 year old. The guilt I feel about maybe leaving her without a mom or having a sick mom is horrible. im just so sorry right now.... im an RN. I should have known better than to blow those visits off! I even prolonged my lumpectomy by two weeks because I needed to finish up some work on My job. I didnt take it seriously and now I seriously regret not doing so.. After I survive this mf'er, im going to get involved with educating women to take care of themselves and stop putting off important things. Lisa
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My cousin's wife was an RN, and a top administrator at Davies Medical Center in San Francisco. She had something show up on her mammo and was told it needed to be followed closely. She never "saw" a Dr again for five years...until she was diagnosed stage IV. Therefore Lisa, you've got it more together than my family! My mammo was due in December, but I figured that the new suggested guidelines of biannual mammos, and that there was no BC in my family meant I didn't REALLY need one. Then in May I found a lump. I waited a month for it to go away before I saw the Dr. She said it didn't feel like BC, and when I tried to call for an appt for a diagnostic mammo I was put on hold for 10 minutes, so I wasn't worried and delayed another 2 weeks.
Lisa, you're human. Stop beating yourself up! With all the normal demands of life you've muddled through and done the best you could. You did NOT blow it like my cousin's wife. Everyone I know that's a survivor says the same thing you do about worrying about every little ache. They also say that as each year goes by the fear calms a little until it's just tiny and distant. You will get there. I will get there.
I was lucky and had clear margins. It helps that I have humongous boobs
I don't second guess the lx at all. I would have had to have more surgery to reduce the left since who but a topless dancer gets 3d implants! Or if I didn't have reconstruction I'd likely have balance problems as I tilted left from all the weight lol.As for the guilt you carry because you're a mother, and how dare you get sick when you've got a young child, I'm in no position to comment, except that I obviously turn myself into a pretzel trying to take care of mine. You've just got normal mom feelings, which only means you're a good, caring mother. Your daughter is lucky to have you, BC and all.
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Pat & Lisacm: I too was considering a lumpectomy. However, I had three tumours of various sizes (multifocal) show up on my mammogram, ultrasound and MRI. This came as a total shock to me because there is no history of bc in my family! Plus this sucker totally sneaked up on me. I had no idea it was even there! I felt healthy and strong and had no notion that something potentially lethal was proliferating in my body in the meantime! If they were to take out the tumours (which BTW according to the final pathologist's report turned out to be just one larger tumour) with a good margin they would end up removing 1/3 of my breast tissue anyway. The six BS's that I consulted with prior to my surgery all recommended a mastectomy. In retrospect, it turned out to be the right decission because there was also an extensive DCIS and atypia all over the tissue. In other words the whole breast was a mess! Also, none if the tests that I had done showed any DCIS or any node involvement! That was another shock! I expressed my concern about the other 'healthy' breast to my BS. She said that to have a prophylactic mx would be an emotional decission, since only a small percentage of women apparently develop bc on the other side. However, I do want to have the other breast tested, just in case.
As far as having a regular mammogram: I had it done last August. It was overdue since April last year. A year before that I had an ultrasound only, because of the biannual guidelines. I wonder if I had a mammogram last year, not just the ultrasound, would it have shown anything? Regrets? Sure I have them!
Lisacm: I too have an 8 year old at home. He is my only child. He also happens to be autistic. I have nightmares about leaving him behind, because he is high needs. He may even need his parents to help him as an adult, so any thought that I may not be around to help him frightens me. I am fighting for him. He is the light and love of my life.
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Lisa? I starting taxotere too but I also have to take herceptin for three treatments three weeks apart.
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Guys- I hadn't had a mammogram in 4 years! I had one at 42 and now 46 had the next!!! Lucky and blessed to have had the last one and I had been putting it off as well, I thought it had only been a year or so...wow!
Pat,lisa,amazon- That is right, we are all good mothers that make ourselves sick with worry for our kids! I have LOVED and overloved and enabled and stressed over mine and it seems they are all OK...not doing exactly as I would want or do but what child does? We do need to give ourselves a break and try to tone down our guilt and stress and maybe that will help us deal with our 'new and improved' lives post BC!! I am not know pretending to know it all- this is just what my 'counselors' have told me and I'm trying to do.
I'm wondering are you all wearing a bra? I had bilat. mastectomy with implants and they told me won't need to EVER wear a bra again so I haven't but feel they are heavy and pulling so I sortof want to wear one...but my armpit where sentinel nodes taken is sensitive and numb and seems to make my arm tingle when I wear a sports bra or camisole even! I was checked for lymphedema since I thought that was it, and told it wasn't and just from the surgery.??? Does anyone else have this? It actually just started after my port put in- my arm and fingers tingled that weekend, the Dr's didn't think anything of it...but now I must tense up too from the port as that side is tight and muscles sore - when I get a massage it is better...weird...
What brand is OK and not tight under your arms?? What are you all wearing??
thanks!
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Audra: I am currently wearing a fluffy sock pinned to my undershirt, as I still cannot tolerate any pressure to my underarm area after they drained my abscess.
Before the infection I was even able to wear my old ultra stretch nursing bra by Medela, that I fitted with a homemade foam prostheses stuffed in a cotton sock. It actually worked very well and looked natural.
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Hi All.
Someone asked me where to get the Eyebrow gel that I used (didn't lose my eyebrows) they just thinned. It is www.BrianJosephs.com they charge $10 to shipped which really annoyed me. So it as $60 tube which is steep but worth it. I did go through 4 tubes because they are small and I apply more then once a day. UPENN where I did treatments had them in their Cancer store for just $40 a tube! But I didn't find them until late in the game. WORTH the purchase though.
Hang strong ladies! You got this!!
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Amazonwarrior today is the first time I'm wearing a sports bra and I stuff the temporary prosthesis that cancer clinic provided. I waited until I was healed from surgery and until my port is not so sensitive
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Audra, my underarm is also sensitive and numb. Last week it was a bit sore, too.
Phebe, i had some swelling in my elbow and saw a physical therapist who specializes in lymphedema. She taught me how to do a massage that helps the lymph fluid to flow from where nodes were removed to other parts of the body. I do it daily to,prevent the swelling. She also fitted me for a compression sleeve for my arm as a prevention. She told me to wear it when I exercise and when flying on a plane, which I rarely do. She also gave me some exercises I can do with resistance bands to increase strength.
Lisacm, faithfully are been going to my annual gyro visits and having mammograms for the past 20 years. The mammo never picked up my cancer and it was probably there for years. The ILC type is sneaky, which is why I opted for double mast. My kids are older than yours, but this is hard for kids no matter what the age. I wish I was more vigilant about monthly self exams. But again, mine was sneaky.
Imdid buy the fake boobs. I wasn't sure if I was going to get them because I kind of like the freedom of not having anything there. I was a D before and now I feel liberated. Anyway, my insurance covered 80% of it and them woman said that may not be the case next year so I opted to get them. Mine are the kind that stick right to your skin and feel real. Ingot two bras to go with them to help hold them in place. I have not worn them. Even when i go back to work during radiation, I won't be able to wear them because that sticky stuff will be on my chest. I am sure I will get some use out of them.
So tomorrow. Is my first taxol and I am very anxious because I don't know what to expect. Do they give you any meds for the side effects? I have to take 20 mg of dexamethasone tonight at 10 and again at 4 am as a premed. I am worried I will not sleep tonight. Do any of you have experience with this?
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smrlvr: I want to get my underarm check at Lymphadema Clinic tomorrow or Tuesday cuz my underarm is sorta sensitive and swelling. Also I want to go and get fitted at a store called Pink Tree. My insurance paid for prosthesis and two bras. Tomorrow I have to take dexamethasone two pills with every meal, six altogether. I'm taking taxotere and herceptin. New treatments for the next 3 cycles every three weeks. Kinda nervous not really knowing side effects. I read that I have to watch my feet and hands, not overuse them.I might get flu-like symptoms. Hope everyone is doing great, not much side effects
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38tooyoung: thanks for the info on where to get eyebrow gel and welcome
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Hi Girls
I just wanted to add a bit of positive news. It's over 5 years (nearly 6) since my dx, and I had the 'full monte'.
When asked what my surgeon would advise if it was his wife........a lumpectomy..........& that's what I had. I also had 24 nodes removed........and it wasn't pleasant.......but I did get over it......followed all the exercises that they recommended...........walking the fingers up the wall did help. It was numb for quite a while.......I thought it was never going to get better.....but it did gradually......now it's back to normal.
Chemo isn't nice........some do better than others..........I know some people who've had no s/e at all. I can't say the same, but it was worth it.
Good luck to you all
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lisacm, you can spend your precious energy beating yourself up or you can spend it on better things.The facts are, some of this crap doesn't get caught by any tests. I had a mammogram and an ultrasound less than 18 months before I found an 8 cm mass. Allow yourself a good cry when you need it, but don't let the bad thoughts get the upper hand.
Tired but doing ok after returning to work today. Got a lot of second looks even though I did wear a hat. Not so sure I will keep wearing it. It got a bit hot. Came home and took a nap. It just really seemed strange to be acting like everything was normal for a change.
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Pat, I'm so envious of your time at your cabin! It sounds like a nice retreat. I'm so sorry for all you and your son experienced, but you saw him through it....go mama bear! It's weird/sad how many of us have had kids with depression. Thank you for sharing your thoughts/feelings about these boards -- that's exactly how I feel and I couldn't have said it as well.
Wallymama, how did work go?
Gayle, your kindness toward your caregivers is amazing!
Re prostheses, I have them but wear them only when go out. I STILL have a sore on the side of my port from surgery, and a bra strap would irritate it. Mostly, though, I couldn't be bothered. I do like what I have -- foam and silicone inserts, and Coobie and Amoena bras.
Phebe, hang in there with the Decadron. It works wonders but for me, there is definitely a "crash" when it wears off.
Lisacm, ((hugs)). We all have been where you are now, not very long ago. You can go back to my earlier posts and find my story -- stage IIIa caught only because of a painful bone spur. And that was after the radiologist who did the core needle biopsy said it was run of the mill IDC 1 cm! It is easy to make yourself crazy, and crazy with guilt. The one thing I've learned in the past year is to let myself feel the feelings all the way through so I can move on. Sometimes that does mean going a bit crazy. But, for me, that gets it all out so I can start dealing more rationally. (Trying out my own words today...see below.) And I hear you about education! Once I'm done dealing with myself, I'm going to become the poster child for self-exams and annual ultrasounds for dense breasts!
Smrvlr, I get 20mg of Decadron with the Taxol infusions which causes 4 am wake ups for me. However, the day after the infusion I am so productive! Also, they give Benedryl and Pepcid to prevent allergic reactions to the stuff Taxol is infused with. If they push the Benedryl too fast, I get woozy. Other than that, it's just a long day.
I had Taxol #2 last Wednesday and have just started experiencing neuropathy in my left hand. It feels like zingers shooting up my thumb and first two fingers and kept me up all night. My MO wants to know about any neuropathy at all and said she can lower the amount of Taxol in the infusion by up to 20% (maybe it was 25%) without losing any effectiveness. I don't want to have that! I want to be able to have it all so that if, down the road, this comes back, at least I'll know I did everything that could have been done. I hate that my body can't handle this. I know it might get better in the next few days, but it also might get worse. I can't imagine living with the physical pain of neuropathy long-term, but I really can't imagine living with the mental knowledge that I couldn't do everything that could be done. This is me making myself crazy to get it all out of my system. Arghhhhhhh......
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Bec, if the doctor says the amount can be cut WITHOUT losing any of the effectiveness, you could just consider that this means that you're getting the neuropathy because the dose is TOO high for you right now. All you'd be doing is reducing it to the proper dose. Right? Don't put yourself through anything that's not necessary!
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Bec? I'm going to ice my toenails during infusion. It says it affects them either they crack or split or break easily, very sensitive. My daughter ask this lady she works for she used it twice but one time she forgot to ice them and her nails break easily. Anything to help me during taxotere.
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Phebe: Would you be bringing your own ice packs with you or does your centre provide this for patients?
BTW: How long do the Taxotere infusions last for?
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My taxotere infusion is 1.5 hours and Cytoxan another 1.5....plus the premeds take about 1.5 before getting these...
My nails have not broken but I do have discoloration and ridges on my thumbs and my tips of finger skin is peeling off..
I have used Sally Hansen hard as nails clear every treatment morning (I read to use it on this site) and my toenails I have painted a dark grey color and they seem fine...I had extremely hard nails to begin with and keep them short...never had long nails(as used to be nurse)...
Good luck tomorrow Phebe! You can do it and you will prevail!!!
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Audra: Thank you for that helpful information.
Gayle: It was nice to read about all the care you received from a wonderful medical staff in your hospital. You seem like a very grateful and appreciative lady saying a special thank you by bringing homemade treats. You also sound like a person who places hope and trust in God. I am glad to hear that you are well enough to bake and make visits. I too baked a chocolate M&M rainbow cake with my son yesterday, as he loves baking.
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amazon - they run my taxotere much faster than Audra's. it's done in an hour. Fingertips are sore but no issues with my nails.
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Can't wait to see what the taxotere does to my nails since they are kind of weird and more flexible and bendable than nails ought to be to start with. Not sure if I could stand to ice them, regardless: I truly cannot stand to have ice or anything ice cold on my hands for very long.
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I would like to say what I'm thankful for. I'm thankful that my margins are clear this time! Yay! I'm thankful that I'm a fighter,and consequently a survivor. I'm thankful for all of your posts because they make me feel better and when I start Chemo in February I have lots of reference materials from these posts. So, thank you girls. Lisa
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Hurray! I am employed again!
And how amazing/ironic is this:
I worked at our DA's Office from 2005 to 2007, doing community outreach and grants management. I left in 2007 to become the director of our local child advocacy center, where I continued to write grants (including some of the same funding sources) among other duties. So here's the amazing part: the person hired to replace me at the DA's job in 2007 left the position at the end of this past November -- i.e. just in time for me to be far enough along on chemo (finished 12/31) to be thinking about work again. Better yet, I preferred part time work, and under budget pressure, they had reduced the position to "up to 30 hours/week".
They are under some pressure for grant application deadlines, so I interviewed on Friday, got a call-back to meet with the DA today, we sealed the deal and I start tomorrow.
We all walk around during cancer treatment saying "I want my life back!". I just didn't realize it would be a carbon copy of the past!
Ellen
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Ellen, that is so great you got that job! Congratulations,
I had my first taxol today, and I feel a lot better tonight than I used to after AC. We will see what is in store for me in the next few days.
I have a question for you ladies. I have had a sinus pressure, plus ringing in the ears since my first AC. The first night it was more like a migraine and has now lessened to the point that is feels more like sinus pressure. Forehead, and behind my nose. Sometimes when I blow my nose it is bloody. I find myself having to blow my nose more lately, so maybe it is starting to drain, I don't know. Also, Advil, Aleve and Tylenol do not work. I mentioned my 2 month headache to my ONC today and he wasn't convinced it was sinus. He suggested I get an MRI. Just the thought of another test just scares the crap out of me. Just going to the test gives me PTSD. He did prescribe an antibiotic at my insistence. I think I would like to try that before doing another test.
Did any of you have these side effects? I know both sinus pressure and bloody nose are SEs but mine never went away. Maybe they will after he AC gets out of my system. I don't know. Little scared.
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smrlvr - I'm on TC but I have had a regular pseudo runny & bloody nose since my first treatment. I think it's just one of those side effects that's kind of weird and annoying at times but nothing serious.
Congratulations Ellen!!!!
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You Go Ellen!!! Way to start the year off with a big bang!! Finish treatment and get a new job! Made a very bright spot in my day to read that.
Bec, I read that the American Society of Clinical Oncology released a study in 2012 that said Cymbalta helped the neuropathy associated with chemo. I'm like you, I want to hit it with as much of anything that they think will help.
Phebe, Audra, glad to know about the nails. I have really weak nails that peel anyway so anything I can do to try to help when I start taxotere is good to know. I'm like Lisa though, I don't know if I can ice my fingers. Gives me goose bumps just thinking about it.
Lisacm, there is always something to be thankful for. We may have to look under a lot of rocks to find it, but it is always there. When do you start and what on?
Second day back at work was pretty good. I had to back away from a couple of people I was helping, but they were both very understanding. There were one or two who tried very hard not to make eye contact, but I really figure that that is some issue of theirs not mine. About half way through the day my head got hot, so off with the scarf. Spent the rest of the day bare. No one really even seemed to take much notice. It actually felt right to be without anything on my shinny little head. I'll keep wearing one to get there, it's a little cold to go out with a bare head, but I don't think I'll wear anything at work anymore. Unless, of course it gets really cold again. The heat in that store is sadly lacking.
Hope everyone has a good Tuesday.
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Smrlvr- I've also had horrific sinus pressure and goopy mucus off and on...plus sinus headache...it gets better the longer out from infusion. I'm having TC - I have used saline rinse and drinking a ton of water...and it seems better. had gusher bloody nose for 3days in a row last week...they would stop after 10 minutes or so but come back! I also started using Vaseline inside nose around it and it is better. I think dry air contributes...
I hear you on the scans and PTSS!!! I don't want to 'do any' but then I do want to have them be clear and KNOW they are all clear...just don't want to actually go and get them done....
Ellen- Yay, sounds like the job was meant just for you! Very happy for you!
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Ellen, congratulations! I'm so happy for you!
Smrlvr, I've had runny sinus drainage since mid-way thru AC (always bloody), and I feel really congested until I'm able to blow the clots out. Then it starts all over. (Sorry if TMI!) My MO wasn't bothered by it and blamed it on the chemo and dry house air. I'm glad you're feeling good otherwise after your infusion.
Lisacm, yeah for clear margins!
Phebe, thanks for the tips on icing, but I'm too much of a wimp to tolerate that for very long! Besides, I've already had two treatments so I probably missed the boat on any effectiveness. I haven't noticed any changes in the appearance of my nails yet.
Lisa137, thanks for your calming words. My fingers are feeling better, just pressure on a few nails but no more zinging/shooting pain. I know it may happen again, but it was a good reminder that how I feel at any one moment in time doesn't mean that's how I'll always feel. I need that kick in the pants pretty regularly.
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