August 2010...anyone starting chemo besides me?!
Comments
-
CKPTRY--I also have a wig (well two if you count my UGLY China wig from Ebay for 0.10) and it is boiling hot here and hard to wear. Similar to you, my chemo will go to end of November and my kids play ice hockey--so the wig will be like wearing a woolly hat. Other than that, I am wearing scarves that I purchased on line and a couple that were given to me at Look Good Feel Better. At home, nothing---seems as though everyone (including me) is getting used to the new look.
0 -
thanks for the input ladies. I called onc office & they want me to come in tomorrow to have blood count & blood pressure checked. Nurse practitioner said this could be from being dehydrated but that it could also be because Neulasta reacts differently with different chemos. JSW I completely agree that trying to do small little things could help me but it seems that everytime I am up & moving the room starts spinning & I feel like I am going to pass out. I'll let you know how tomorrow goes and as for now, I am going to chug liquids for the rest of the day.
0 -
somanyblessings - I am praying for a miracle for you. (I never say that to people, but it's true nonetheless)
My timeline:
June 1 - routine mammogram - diagnostic due to benign microcalcifications they found last year. But this time, I had to go in 4 times before they talked to me. Told me they found new microcalicifications in the other breast that they could not dismiss as benign. I should come in for a biopsy.
June 3 - Stereotactic Core Biopsy - they said "95 % of these are perfectly benign." But we like to have people come in to get their results rather than over the phone. (I did not take this as a sign, but should have.) Convinced the whole thing was over.
June 8 - Meeting with Nurse Practitioner to go over my results. Expecting nothing, I didn't bring anyone with me and had a whole long day ahead of me. The first thing she said was "Unfortunately, we found that it is cancer." And I sobbed for about 20 minutes. Called hubby, he was in a meeting and couldn't answer. 2nd shock - she explained that it was agressive and I would definitely need chemo and possibly a mastectomy as well. At each of those words, I cried more. She had already made an appointment with a breast surgeon and an oncologist.
June 15 - Meet with BS - orders MRI (no one has seen or felt a lump yet, don't know how big it is.)
June 23 - MRI
June 28 - Meet with Oncologist no. 1 - he gives me MRI results (2.2cm lesion in left breast). Don't like him
July 1 - US-guided biopsy of right breast, 9mm lesion, probably benign.
July 2 - Good news - Right breast benign
July 6 - Call BS, tell him let's get this show on the road! He calls back: surgery is tomorrow! Oh, and Meet with Oncologist no. 2 - like him. He says "get a port while your in surgery - I'm calling the BS." Oh, and have to go to nuclear medicine for some injection to find the sentinal node.
July 7 - Lumpectomy, SNB, port placement
August 2 - First treatment TCH
0 -
Calamytkel- I too still have a decent amount of hair and I am now almost five weeks into chemo (2 weeks post second treatment). I had to start wearing scarves and hats a week ago Monday, because my hair had thinned so much, but I still have hair, and not just a few strands. Funny thing is, I thought the same way as you and on my last visit to the oncologist, I asked. It was my thought that since my side effects are very mild and my hair seems to be hanging in there, maybe this chemo wasn't working the way it should. After all, my body seems to be holding up to it pretty well, so maybe my cancer cells are too. He assured me that there is nothing to make anyone think the chemo isn't killing the cancer cells, but I really do wonder! Realistically though, I guess I just have to believe it is working because there is no way to prove it.
Somany: I am so sorry you have to worry about anything else other than your fight against breast cancer. I too am a single mom and sole supporter of my family. I have been blessed however in that I have been able to work right through this all, although I have cut my hours at my second job. I am falling behind on my bills too, just concentrating on keeping the lights on, a roof over our head, and the car in the driveway. I figure I will worry about the rest later. Please try to prioritize your bills, and worry about those most important to you. Hopefully that will make it a little more manageable. Also, ask for help, especially family if they are available. If you go to a hospital for treatment, maybe they have a Social Worker to help you find assistance.
As for me, I have been thinking about the buzz cut lately. As I said before, I still have a decent amount of hair, but as my oldest informed me, I do resemble the Crypt Keeper and "I look sick". Kind of worried about allowing my kids to buzz my hair. For those who did it, how short did you go?
0 -
Oh, chemobrain....I forgot my timetable:
Found lump mid-March in shower.
GYN appointment (after I cancelled twice, too busy!) March 30. GYN so concerned HE scheduled my mammogram for the following day and my appointment with the breast surgeon for the next day. Even offered to drive me if I needed! Emphasized several times, that I had to go...immediately!
Mammogram and sonogram March 31
Breast Surgeon April 1
Biopsy April 5
Received Dx at breast surgeon's April 12. LCIS, not really cancer, more like a warning sign.
Lumpectomy May 7 (my choice to wait that long, busy schedule in April and there didn't seem to be a need to rush)
Received REAL Cancer Dx May 18 at breast surgeon's office. Seems to the ILC was hiding on the underside of the tumor. So, the biopsy only got tissue from the top and the invasive cancer remained hidden.
Breast MRI June 5
Decision to proceed with partial mastectomy versus total mastectomy June 8
Meet with oncologist June 17
Bone scan and chest/abdomen/pelvis CT June 26
Partial Mastectomy and Sentinal Node Biopsy July 2 (again my choice to wait so long, wanted to have an extra day with the holiday weekend to recover before going back to work).
Second meeting with oncologist July 19....nodes positive, received chemo plan
Start chemo July 30
About 4 months from GYN visit to chemo start
0 -
OK - I hate using my breast cancer as a pity party, but I am so frustrated with some people. I have found (based on 2 treatments) that I feel really crappy (nauseous, fatigued, slow, foggy) for a full 7 days after the treatment. Last night I went to rehearsal (I'm doing "Jerry Springer, the Opera" - a West Coast Premiere) despite the fact that I really felt nauseous. I almost didn't go, but I really felt it was necessary for me to be there. Rehearsals involve a lot of standing around, which is what makes me feel worse. So, several times, when they are rehearsing other people or talking, I go sit down in a chair which makes me feel a little better.
2 people ask me how I'm doing. I answer "I've been better, but at least I'm here." One says, "Yeah. I have a sore throat." The other "Yeah, I think we are all tired." I just smile at them and try not to throw up - I've brought ginger chews and saltines which help settle my stomach a little bit.
Then today, the director sends out an email pointing out how hard people are working - really praising most of the cast by name for doing things like practicing their choreography, or asking intelligent questions, or showing their dedication by coming to rehearsal from the airport. I started crying because I wasn't mentioned. I felt like I made heroic efforts to be there last night and give 100% and nobody even noticed. I mean, after all, they had a sore throat, too.
I feel so guilty for feeling this way. Mostly I just want to do my work and not call attention to the fact that I'm undergoing CHEMOTHERAPY for CANCER. But, it made me so upset that all these people got called out and praised for basically just doing their job. If I hadn't been feeling so badly, I would be doing exactly the same things. And yet, no one even notices that I'm there. (I got shoved to the back of the crowd twice because I wasn't in rehearsal on Sunday - because I was feeling SO SICK.)
Sorry, just needed to vent. And no one else seems to understand. They seem to think that it is the same as a sore throat or feeling tired. GRRR.
0 -
All: I found an interesting link on hair loss and why some lose it and others don't. If you scroll down only 1/5 down the page, there is a whole list of chemo drugs and if you click each, you will see what effect each has on hair.
http://natamcancer.org/hairloss-body.html#drug-1
Also, for anyone worried about chemo brain, go to shockwave and play text twist and other word games. Also, spider solitaire...this one drives me crazy!! I can hear you all saying "er!"
Your FEARLESS Leader!
0 -
I went out shopping in the heat today with my franceluxe scarf. I really like it even tho it to was a bit hot and uncomfortable at times. My onc ofc has chemo mentors and my mentor told me she would put a damp washcloth on her head, then a wig liner than then wig. I haven't tried this yet. I feel guilty reading other's posts because my SE's seem to be minimal right now. 1st round i had horrible back pain for 24 hours. I still have a bit of nausea but ativan under the toungue works quick. I had a routine mammo on april 23 at a different facillity than my usual. they had a question on the questionaire about feeling if the skin is thickening. I remembered that I had felt something "different" and answered yes. I saw the breast surgeon on May 6 so it didn't take too long. I am so glad I didn't go to my usual facility as I don't think they ask that question and with ILC there is often no lump. A gamma gram found a small tumor in the right breast as well so i opted for a bmx which I had on july 8 along with node biopsies. I was shocked it had gone to the nodes and scarred to death of chemo. my hospital experience was bad. there was a lady on the floor who was dying and she screamed "help me" 24/7. I felt like I was in a bad nursing home and I have complained to the hospital. Today I got a letter from the hospital asking for a donation - fat chance!
0 -
Lisa: I totally know what you mean. Some of my family basically feel like I spent my mid-20's to mid-30's partying it up in Manhattan, making money and living what they perceived to be a care-free life. I guess because I did not want to raise kids in the suburbs (no offense to anyone...we all make choices) I am expendable now that I have bc! Furthermore a close friend from NY just told me a mutual friend was just diagnosed with bc and how he felt bad and wants to get her a card for do something for her. I was like you did not even get ME a card and we are close, like talk every day close. He said he had signed a card but maybe it did not get sent! I was pissed! I know...it sounds stupid but he is a really good friend but like most guys he probably needs some training in sensitivity. I hate to say it, and it is so cliche, but my most emotionally adept male friends are gay! There, I said it! It is the truth.
In the end, I totally understand how you feel. You are there with 2 tires on your truck, trying to make it through and the others, with all 4 tires, are crying about a tiny crack in their windshield and they receive accolades for making it through. My only question is does anyone know you have bc there? Based on the way you wrote your post I can only assume they do. I worked in theater when I was young and I can understand how, as bc patients, we are spread emotionally, mentally and physically thin anyway. More to this point, I am glad we all have each other and can come here and vent! Feel better...I am sure it was an oversight.0 -
Lisainglem- you have every right to feel that way! why didnt the email say "and way to go lisa for showing up after all she is on chemo! sorry a cough drop wont help her..." Sore throat or SE from chemo, pls i beg you to give me a sore throat!
I guess people arent apt to step out of their own minds for a minute and think of who else may be sacrificing so much more... wow i just got so angry from your ordeal! lol
0 -
Rachel - I was told Avitan is an anti-nausea. In fact, when I complained that the compazine wasn't doing it for me last time, my doctor layered the avitan with it for me this time -- so I take one compazine and one avitan - they are different mechanisms so can be taken together -- and I've had no nausea at all! I did wake up in the middle of the night last night hungry and queasy. I took one compazine and a 1/2 avitan and had something to eat and I was okay.
Now I will say that taken together they KNOCKED me out the first night after chemo. Monday night I was practically comatose for 10 hours. But better than nauseous!
I feel it's working very well for me - they're teeny pills but I'm taking 1/2 and it can take the edge off the nausea.
With compazine it seems to do the trick, at least this round! 0 -
Thank you to everyone who put in the time lines. I felt like trying to get treatment was a pretty disorganized process. My sister works at a hospital in a different state and checked with the mammo area staff and was told that it just is like that. Great, extra trouble right when you need help!
About the third week of May-- I saw a lump in the mirror while brushing my teeth....????? No discoloration or pain. Waited a day to see if a rash/tick ring etc developed. No, so called gyn and made regular appointment, was due anyway, appt for 1st week of June. He said, prob nothing, but go for mammo/sonno if something shows.
First avail apt a week later. Negative mammo. Radiologist tells me go home. I showed radiologist the lump and freaked him out (not a people doc). So he has them do the sonno. They see 'something' and say the only way to know what it is i get a biopsy, so I should consider that.
I was 43 then. At no point did anyone act like there was any urgency, so I really didn't think it was any big deal. So I scheduled the biop for the end of June after my vaca, And was stunned to get a cancer diagnosis at 3pm July 2, before the holiday weekend. So by Tues I did have a list of Drs I wanted to call. By Thurs I was meeting Drs and having tests.
Had right mx with immed te on July 20 and started chemo Aug 19. Second treatment tomorrow.
RE INSURANCE/ out of network: I have posted this before, but I was able to get my out of net work plastics paid for by getting a 'case manager' at the insurance company. My question was "I already have a BS and and operation date, why are you telling me to go to somewhere out of state. Why do you not have a doctor on the plan. Why can I go to Philly, New York, Baltimore, or Pittsburgh, but I can't have this done here?" And I just STAYED ON THE PHONE ASKING WHY. And they paid it.
I am with everyone who wondered about the hair. They said tomorrow was the day it will come out. Nothing is happening. No real side effects, was just a little tired last time.
For the good drugs--I went back to my primary, he gave me what I asked for and just said call. I think the part where I cried helped. Also I have him gathering ALL the records so he can review. I found each of my specialists missed something that I thought was pretty big and they should not be counting on me to bring up. DH would not have known to tell them. Also my primary had a handheld (phone)(computer) that he was able to enter all the drugs plus the chemo drugs plus the over the counter drugs and it popped out the list of potential drug interactions. (none, but that is NOT the point) Pharmacist said they could not help me with things they did not rx (like adding in the chemo meds).
Not only am I normally a terrible patient because I know everyone makes mistakes and I don't want it to be on me, I hate everything they do in every medical procedure. And I read the charts, and I make them give me copies. And then I take them to other doctors. I bet the office staff hates me. But I don't care if they do.
ON THE CHOPPING BLOCK: the imaging center, the pharmacy, and maybe my gyn. The gyn gets one more shot. After I am done w chemo I am going looking for another pharmacy.
0 -
Hi Chemo Sistas,
I noticed someone mentioned their hair wasn't falling out, I don't think everyone looses their hair my mom didn't and they told her she probably would. I am day 14 tomorrow post TCH and still have my hair, few strays her and there but have the majority left. I know I must be weird, sometimes I wonder if they gave me chemo, because I hardly had se. I asked at the 1st treatment if there were different strengths of TC and they said no it was all based on your body weight. So who knows, I guess I was told day 14 is the magic number for hair lose. I have said before I won't shave it til it comes out in large amounts, defiantly something I can wait for.
0 -
Hi everyone---about hair---I am almost at my 2nd FEC chemo and I had shaved my hair a couple of weeks ago and I am JUST starting to lose my hair--it isn't falling out a lot but I can easily pull it out (No--I'm not sitting there pulling it out--but wanted to see---strange?? probably
). I just now noticed that I haven't shaved my armpits in what seems like forever and there is no hair. Then I went for pedicure and thought "gee, I haven't shaved my legs in forever" and there is no hair. Guess, it is working. Now that I wrote this I sound like someone who has terrible memory--can't remember when I last shaved??? Sounds crazy! 0 -
Me too on the hair thing. I'm 10 days after my second round and still about 50% of my hair left.....actually maybe it's less. But still quite fuzzy after having shaved it. But honestly if I'd left it long I'd look like one of those undernourished mangy central american dogs that hang around the beaches. (we just moved back home from a couple of years in Panama and these dogs were always around and always so sad and semi-hairless, I can't help thinking everytime I catch myself in the mirror how much I resemble them!!!) OMG what has my life come to??????
0 -
You two are an inspiration, you look good without hair. I will probably look like a guy LOL : (
0 -
Oh....I think that I look like a guy---some marine sign up. Better when you put on the makeup---I went to that Look Good, Feel Better last week--no wonder they give you tonnes of makeup...!! LOL
0 -
Oh yeah - since I lost my hair, I am meticulous about putting on makeup before I go out. It makes a big difference!
Mine started coming out (as in I could pull it out in handfuls) around day 16 or 17, and I shaved it with a razor on day 20.
0 -
okay, I'm casting my vote for lisasinglem to wear the next Brave Girl Cape for going to those damn rehearsals with those clueless snifflers who either have to deal with such tragedies as an ingrown toenail or a run in their stockings!
0 -
Just got a letter from my thoughtful GP with a note saying I need a mammo and a scrip for one! I will return advising her I have no boobs and send me a copy of my records.
0 -
I think if you show up for things it makes it seem like your disease/treatment is not that serious and people just act like it is minor. Ater all, if it were serious, why would you be out and about?
I only missed 2 full days of work, the day I had the mx and the day after. But I am very lucky, my co workers who are all female, never say stupid stuff like lisasinglemom's and some of your others.
Sometimes I need to bring other folks down a notch tho'. One of my favorites is to tell them I can't drive because of the meds, but I can show up and sit quietly, because I planned all day for this. I know they mean well.
But I am not really on any meds anymore, exept the valium when there are gonna be needles. But maybe they all been edumacated by now......never can tell .
Have you all seen the thread about dumb things people say to you? Amazing.
(My father told we are all gonna die someday, some of us sooner than others. Then started sending me those inspirational death emails where people found god or angels or what have you. So I was forced to tell him that I was not expecting to die in the near future from a stage 1 cancer which has been completely removed from me. So perhaps he needed to see a counselor of some sort, but not a grief couselor on my account. And do not send me any of those emails, because they are not inspiring, and I don't need to find God, because am not lost. So far so good on the emails anyway.)
0 -
lisaattheshore: I say YOU GO! I'm just like you in doc appt.'s. I take notes, or record our appt.'s; I get copies of all my test results, including images; I get second or third opinions; I bring in my own research to ask about. It's not that I want to be a pain in the butt, or that I think they're going to make mistakes. It's more a matter of how I deal with things and needing to know that everything is being considered. It is just part of who I am to want to know and understand everything I can about things. I'm a research junkie, and I like learning about new things, especially when they have to do with my health or the health of someone I care about. There's no way I could be told I have breast cancer and NOT go out and read every reputable book I can get my hands on about -- in part because it is fascinating, and I want to know more about it, and in part because I need to know enough and get enough feedback from my doctors to feel confident that I (and they) are making the best possible decisions. If that's a character flaw, then so be it, but I don't think it is. I am always respectful to my doctors (except for two along the way who treated me like I was in the second grade). I talk to them with the appropriate amount of humility that being a lay person requires. I don't go in and say, "This is what I want to happen..." I say, "I've read about such-and-such. What's your opinion of that?" I'm kind and I pay attention. I don't believe medicine should be a consumer-driven industry. By that I mean that I don't think patients should assume that because they've read Dr. Susan's Breast Book, that they are experts on breast cancer and know better than their doctors, or that because they saw an ad for Fosamax they should march into their doc's office expecting him/her to give it to them (our Canadian friends might point out here that it is illegal in Canada for pharmaceutical companies to advertise their products). I believe medicine is as much art as it is science, and we need to begin from a place of trust with our doctors, and I do not presume to have the expertise that comes from their years of experience in treating patients with these drugs/tests whatever and seeing how things worked out, etc. But I do believe that our relationships with our doctors ought to be partnerships in which both parties bring equally important things to the table, in which both parties are responsible for their own and each other's education. Patients, I think, in this time of easily accessible information, should do all that they can to educate themselves, so that they can take what they understand, combined with what they possess in the way of values, needs, their own goals for their health and well being (because these goals may not be the same as their doctors' goals), and what they understand about their own body (i.e. how it reacts to medication, stress, trauma, healing, etc.). Patients are responsible for these things, and doctors should be responsible to their patients to listen respectfully to these elements of their patients' lives and do their best to incorporate them into the overall care plan. Okay, so I went on a little rant there, and got way off track, but something struck a nerve. I will add one more thing though. In my experience so far, almost all of the doctors I have seen, for this and for the other medical issues I've dealt with, doctors these days tend to appreciate it when their patients are educated and ask insightful and helpful questions or offer suggestions. Most of my doctors have respect for this partnership model of practicing medicine. Actually, all of them do, because if I see one who doesn't, s/he doesn't stay my doctor.
Anyway, lisaattheshore, I bet the staff there doesn't hate you or don't feel pestered by you. I bet they respect your intelligence and your thoroughness in handling your own "case." And I bet if anyone at that office got sick, they'd handle it the same way. And if I'm wrong, then you just go on doin what you're doin anyway!
Okay, I'm done. I'll let everyone rest now.
0 -
I was so upset last night. When I got into bed I realized my toes and feet had numb spots on them and the tips of my little and ring fingers were tingling. I posted last night on the TCH thread. What do you think, could I really be getting signs of peripheral neuropathy after one treatment? I will call in today but I don't know, this has me so upset. Even this morning I can tell there are numb spots on the tips of my fingers as I type. If this happens after just one treatment and I am supposed to have 5 more - I can't imagine!!!
0 -
Morning all,
Wherria/Lisasinglem/ALL- totally agree that the cape should go to Lisa. Lisa I read your story and I was appalled. I wanted to be there with you to slap some sense into those people. But I think you're right in that sometimes we're our own worst enemies. I'm so busy telling people how fine I am that I think they're starting to believe it! Maybe, instead, I should be listing my issues. Can you imagine that conversation? "Yeah, man the diarreah is KILLING me today. And my head feels like fat gnomes are gnawing away at my brain stem, and did I tell you about how ITCHY my scalp is? Like lice infestation itchy. Eck. No, no, no I'm FINE. Cancer really has turned out to be a BLESSING in my life. I'm FINE. Excuse me while I go change my bra for the third time today. I sweat like pig in heat these days, never mind me. Toodaloo friends!!" THIS, is my biggest problem. I need to start being more honest about how shitty I sometimes feel.:)
Adey- send your doctor a stupid stick to hit himself with. Insensitive clothead.
Omaz- don't know if this will help but at my cancer centre it's par for the course to have my feet and hands in ice as I go through my taxotere infusion. It's really uncomfortable but it seems to have helped with both the neuropathy and the loss of finger and toe nails. The nurses insist on it and keep changing the ice packs throughout the infusion. Maybe something to ask about for the second infusion for you? I've had no neuropathy side effects at all so far.
0 -
Thanks sweeney, they don't do that at my center but I did anyway with frozen peas in lunch sacks for hands and feet and elasto-gel caps. Did they tell you of any supplements?
0 -
No, no supplements were mentioned. But my cancer centre has a refridgerator full of ice mitts and boots. They're these big cumbersome things that get fitted over hands and feet and are frozen. When they begin to melt they switch them right away. Ice chips in a container work just as well. They were running low on ice mitts one day and gave me a basin with ice to put my hands in. Cumbersome and cold but it seems to be working.
0 -
Hi All,
Just checking in. Went back to work this week so waaaay less time than before. Been feeling really good. The only side effect which I mentioned in an earlier post was tiredness which gradually wore off. I had my treatment on Wed, 8/25 and by Saturday it was like it had never happened. Next one is on 9/8.
Tomorrow I am going to buzz my hair really short and have my wig styled. Definitely the worst part for me. But so it goes.....
Hope you're all doing well.
Liz
0 -
Hello Chemo sabes: My first FEC was Tuesday, and don't hate me, but so far my SEs have been minimal and I got my neulasta shot yesterday, and no pain. The nurse said if the bone pain was going to hit, it would hit quickly and last 3 to 5 days. But none, so I guess (hope) I've dodged that bullet. I took the zyrtec she recommended to ward off bone pain. I got nexium script yesterday and it's helped my heartburn. My headache went away with a good nights sleep (thank you ambien) and I'm only slightly, sort of low level, nauseous but am on my last day of Emend so I'll see tomorrow if the zofran works. I've also got phenegran left over from my BMX. Does one work better than the other?
I've pulled out my notebook where I keep up with all my cancer crap, so I'll put in my timeline later today.
Lisa: I agree, you get the cape.
Sweeney: you crack me up. Go for it, tell them all about it.
0 -
lisasinglem
Lisa,
What about mentioning something to one of your bosses. You don't have to mention being left out of the email but you can say something like, I'm having a lot of nausea, bone pain...whatever is making things hard.Say I just wated to let you know I am extremely committed to this but may need to sit more during down times, it's not that I'm disinterested I just need to manage my fatigue in ways that won't interfere with my performance. (I'm sure you can say it better, I'm not it the field). That way you know that they know things are harder than they look. If they still don't acknowledge you than #&% them, anyone who matters knows you are awesome!
hugs,
Carolyn
0 -
I love you ladies for being so supportive!!! I did make an announcement on the very first day of rehearsal that I would be undergoing chemo for breast cancer, so not to be alarmed by my lack of hair or if I can't be to a rehearsal. I did that because I wanted people to know and not talk about me behind my back.
Funnily enough, I "friended" the director on Facebook, and my status was something about dealing with nausea at rehearsal. Last night, he came up to me and said hello and smiled and asked how I was feeling. Then another cast member (bless him) walked up to me during a break and said that I was his "hero" for always being at rehearsal and always being committed to what I was doing, even with all I was going through. So, that cheered me up a little bit.
I'll take the cape for the day though! (Does it help me fly like Superman?) :-)
I've had Type I Diabetes since I was 8 years old, and that is something I always dowplay, because I don't want people giving me that pitiful look (especially when I was about 13). And I realize I don't want pity - I just want some recognition that I'm doing a good job and that people appreciate my efforts.
Y'all are the best!
0
