March 2011 chemo-lounge
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I'm right here with you Lilylady, I can't sleep either. Cancer DOES suck. It is evil. I just found a lump, but how can that be? I had a bmx just two months ago. I'm sure it's nothing, but I will get it checked out. Now my 14 dd has a rash of some sort and she's thinking she has skin cancer. The poor baby. I hate how cancer has made her freaked out and any little thing she discovers she things it's related to cancer.
Lilylady, sounds like you are coming up with a solid plan. When you take control you feel better. Talk to whoever you can in your human resources department. They may even have a health advocate that will contact the insurance company for you and get this ball moving. Enough with this stagnation.
Well, let's hope we both can sleep tonight.
hugs, min
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HerbnStan, I felt the strange texture in my hair too, around day 5 after my first chemo. Like, this is NOT my hair - no one else agreed, but I know my own body, so I buzzed it all off and was much happier.
LilyLady, So lousy about your insurance struggles. As if you didn't already have enough to deal with...Sounds like you have a really great plan to get them to reconsider their idiotic decisions though - you go, girl! You may have mentioned it already, but would you mind sharing what company it is? I've been so happy with mine (BCBS) and letting everyone know, I would hate to think I am gushing about the same company that is denying you the coverage you deserve...
My next Chemo is tomorrow and I am VERY nervous yet strangely excited at the same time, because as of last night, my large lump definitely seems a little smaller, and I am ready for more drugs to attack it again!
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LillyLady, All of us are behind you. That is just so wrong on so many levels. If there is anything we can do, let us know. I would be happy to write a letter or send an e-mail or something just telling them how despicable it is. The issue my insurance co. had was having a bone scan at the university hospital downtown. I am apparently capitated to the local hospital. While I understand their position, when you have a really serious illness, you need to go to the places that take care of that stuff and not the local hospitals in my opinion. But to just say, you shouldn't even have the treatment, or you can have the treatment, but you'll have to suffer side effects when everyone else is covered to have them taken care of, I can't see any logic at all. I would be interested to know what insurance co. that is as well. I think your plan to get it to some of the human resource people and others in the co. paying the insurance bills is a good plan. Please let us know if there is anything we can do. You are in my thoughts and prayers daily. Don't let them get to you. You deserve to be treated much better than this. It's completely unfair and shoddy treatment. Best of luck with the human resource people. Maybe you can e-mail or call them today rather and get the ball rolling. You're strong enough to fight this and cancer. Don't let it get you down.
Congrats Blue CowGirl! Let us know what the doc says. I am really interested in how all the other neoadjuvant treatments are going. Best of luck to anyone else sitting in the chair this week as well.
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Kay-I haven't had a chest twinge in at least 3 days-I am 6 days out from my first TCH. I am seeing that as a positive. It has been off and on for a while but absolutely none since Sat. Since mine is so daggone deep in my chest it is really hard to "feel" the size-and I am afraid of it anyway.
Herbnstan and Blue cow girl-my hair feels wierd also-funniest thing is it feels like a cheap wig!! I think I am too early for it to fall out yet. Hoping to go back to work next week and still appear normal.
My insurance co is Humana. I kept bragging on how nice they were being ect. I have been "adopted" by a "family"-1 regular nurse, 1 cancer nurse and a lady who answers my questions. Only problem is my family now has an evil stepfather-the medical director. None of this woud have been a problem til the whole staging thing-once they ordered the Pet everything went on hold pending review. Ultimately I think they are going to have to pay--but EVERY treatment will be automatically denied. That is their standard practice. I have a lot of people working on it today-hopefully I will hear that I am getting chemo tomorrow.
I really need to go over to Stage IV-these are the people with the answers-but they scare the crap out of me. They are so brave strong and smart-they don't whine and cry to their friends. I have gotten some great PMs from a couple of them. Some of them could be phds in cancer tx. insurance ect. They just have a whole other language and I am still paddling down the river D'Nile.
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lilylady - It's heartbreaking what the @#$% insurance company is putting you through! I really think you're wise to be onsite, making connections and noise re: what's happening with your treatment coverage. I also would like to know the actual insurance company's name BUT the beauty of your situation is that you can work the Ford angle, the Komen angle, the basic humanity angle, etc. Why not work it on their dime?! I know this will all take energy but you have always struck me as very powerful and clear headed and strong willed. I think these attributes will serve you well. I am also on board if we can mobilize in some way to support your cause. Hang in there and keep us posted. Hugs to you...
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Lilylady, I think that you are doing the right thing to go to work and fight those insurance turkeys! It will help you feel that you are doing all you can to control your situation and make you feel strong when you get something accomplished. The people at work and Komen should definitely help you, you are right about that not being a good thing to go public! You go, girl, you can do it! Feel free to come here and talk to us whenever you need a boost.
Christine, I wasn't sure if it was post first chemo or post final. I guess that makes sense.
Maria, cold caps were not offered to me. I probably wouldn't have done it anyway, but even so, major cancer facility in a large city with the largest private oncology practice in the country - you'd think they might have mentioned it as an option. My onc told me "you will lose your hair". People have asked me if I for sure will and I assume so. I'm ok with it. I'm not sure I would have wanted to deal with the hassle of cold caps. I just want it to be over with ASAP!!! How are you feeling after last week's chemo?
Migallen, so sorry to hear you are waiting again. Keep us posted. I will hope for just scar tissue or something else equally innocuous although inconvenient and scary!
Regarding nails, has anyone had changes with their fingernails or toenails? I've read about some changes, particularly from the Taxotere. Just wondering if anyone knew anything here yet.
I'm going to see PS today for another fill. This will put me at 420 cc's, I think. Will have to look over my notes to be sure. Stuff that I used to take for granted in my head is not there anymore. Is that chemo brain? I'm not sleeping well still. Not sure if general anxiety or discomfort from the TE's. I've not wanted to take Ambien, but tonight may be my first night back on it. More meds, ugh...
Took one of my corgis to the vet yesterday for her seasonal allergies and he was saying spray this on the hot spots, give her this steroid, an antibiotic, and ointment for the eye. Start this one today, that one tomorrow, taper this one down after four days, then again after another four days. I didn't say anything to him about BC, but I thought to myself, oh lord, here we go, now I need to keep a journal for the dog's meds as well as my own. I can't remember if I've taken my vitamins, tylenol, daily coumadin, etc. without taking note of it. And when I go in for chemo, yikes, it's even worse with the steroids, the anti-nauseas, the water, etc, etc! ahhhhhhh
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Ugh, I just got back from NCI and they took a look at my new lump. They did an ultrasound on it, so now the waiting game begins AGAIN. I was told that I still had breast tissue? I was like huh? I thought the point of blmx's was that all the breast tissue was to be taken out. I'm upset to say the least, and by that I mean, I'm mad!
thank you for listening.
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I wonder where the breast tissue ends and the chest stuff begins? It is hard to figure that out by looking at an antomy picture. I am like you-I would have assumed a blmx would remove all. Are they tellingyou how long you will have to wait for the results? Because you can pick up the films and reports yourself. You know a radiologist had to be there looking at it before you even left the building.
You know we are all praying that it is something simple and fixable. Have thought about you all day. Won't tell you not to stress-when someone figures out the cure for that let us all know.
Supersally-had my shepherd to the vet last friday for the same thing. Using a new guy and he went in length over how damaging steroids are to the system and overmedicating can lead to further complications ect. He probably thought I was crazy because I laughed at his whole speech. Thank God for steroids dude is what I wanted to tell him. Cute guy but he had a soul patch--uggh-I just find them annoying
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Lily - It is more than shameful what the insurance company is doing - very difficult to believe they could be so heartless. Sounds like you have a great plan and some big guns there. Wishing you all the best. Glad to hear that you, too, did not have any really horrible side effects from the TCH.
Herbnstan - Thanks for the post - I am also glad that I will be able to see the effects of the chemo re shrinkage. My tumor is close to the chest wall so is not palpable so it seem that I will have to wat until after treatment 4 to see how it is working.
MDG - Thanks also for the welcome post and for setting up the lounge. It has been so helpful and as I said earlier I credit it for having eased me through the first treatment. I was so frightened. I will appreciate any help through the surgery later.
Forgot who wrote about reluctance to take Ativan. I was the same but by about day 7 I had had so little sleep I took one - got a fairly good night's sleep and did not feel any SEs from the Ativan so I am now a convert!
I am having my 2nd TCH tomorrow - any company out there? In a strange way I am looking forward to it - can't wait to get through this. I asked in my first post whether anyone got a face rash and got no responses to that so I am assuming that I had a really one-off type of reaction.
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migallen: Hope to hear good results from you. I thought that was the point of the mx, also. Sorry you have to go through this again.
supersally and lilylady: Same thing with my cat yesterday! They say he's borderline diabetic, so now we have to start insulin. Are you kidding me? I stood there in my cancer hat, wondering what on earth the vet was thinking while going through this. I'm supposed to remember these details?
Just curious, I am on 4 A/C (every 2 weeks) and then will do 4 treatments of dose-dense taxol (every 2 weeks). Anyone know why some do the 12 weeks of taxol and others do dose-dense, like me? Stage (in my nodes)? Pre-menopause? HER2 status?
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feeling pretty tired today,blood count must be low its week two after chemo
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Lilylady, glad you're feeling good about the chemo working. I think it is with me as well. It seems to have shrunk, but it is deep as well, so I won't be able to know for sure how much until another MRI is done either. I am feeling positive about it as well though.
My hair feels different too. It feels like straw. It used to feel softer and silkier. I think it's thinner too although I have seen any come out on my pillow or in the shower. My husband says it's the same, but I know it's not. It's short any way, but I'm not ready to buzz it off yet. Probably have to within a week or so though. Getting my eyepatch ready for my next day at the lounge.
Where I'm going for treatment, there is a lady whose job is basically to help anyone getting treatment. I think she is a nutritionist, but basically I was told I can call her on anything and she would help me find what I needed. She sat with me during the first treatment (I've only done the one so far). When they put the red medicine of the AC through, she told me my face was getting red. It was red for several days. I don't think it is any more. But I have roseachea (sp?) any way and very fair skin, so I blush really easily and can get bright red at the drop of a hat. So I wasn't surprised or alarmed at all by this. Not sure if that is at all like the skin reaction you're having.
Sending good thoughts your way for good results Migallen. Does sound strange to have breast tissue after a mastectomy. I wouldn't have thought so either.
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ChrissyW- I wouldn't really call it a rash per se, but my skin has definitely had a reaction to the chemo. The first few days I had what looked like bright red gin blossoms on my cheeks and also on my chest. They're fading now, but still slightly visible on my cheeks. Nurse said it was a less common but not unheard of SE. Is that like what you have? FWIW I am very fairskinned (redhead).
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Hi Maxine, just popping over from Feb group as I'm not to far ahead of you guys...I am on same tx as you. My last AC is this Thur then I start Taxol. Not sure why the 4 treatments, but I have bi-lateral bc, it is in nodes. Have been given stage 2 and stage 3 diagnosis from 2 diff. dr's and another says she doesn't like to give stage until after surgery. I will have surgery after chemo how bout you? Maybe this is why the shorter treament cycle?
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Jenn and Maxine,
I am also on dose dense 4 AC then 4 taxol. Both oncologists I met with recommended neoadjuvent chemo (ie chemo before surgery) due to the large size of my primary tumor. I do also have it in at least one node, and path reports says sample in lymph is >1cm. Only in one breast though. I got "Stage III" dx according to my doc because of the size of tumor, the fact that it lies in 2 quadrants, and the node involvement, though she also told me some docs might consider me late stage 2 she says early stage 3. I don't think staging is an exact science, especially pre-surgery.
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Re: red face
I am perscribed sterioids to take the day before chome, the day of chemo and the day after and my onco says that will give my face a redness, tho not necessarily a rash.
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Hey ladies, can I join?
I did my first round of TCH last Wed (3/23). I must have been hopped up on steroids because I felt fine--even went to the gym--until Sat when I suddenly crashed. Since then, I have had the worst runs which surprised me since everything usually shuts my system down. I have had trouble staying asleep which makes me feel even more like death warmed over. It's been hard to eat and I'm getting increasingly lightheaded. I guess the Neulasta is causing some pain in my hips and legs but it's not that bad. All I really want to do is eat a decent meal without feeling like it's going to kill me.
It might be my vivid imagination but my hair feels weird. I did some extra conditioning today so it feels less straw-like. No shedding yet. I will buzz it at the first sign.0 -
Hi pasmith!
I had the same feeling after my first chemo, very wound up, do you take decadron or dexamethadron (sp?) for nausea...this apparently makes you hyper...
I shaved my head on day 17 after it began coming out by the handful...it was very itchy and maybe a little tingly from the beginning though so I don't think you're imagining things! Good luck!
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Tomorrow morning my sister will be driving me an hour up to Pittsburgh for my 3rd treatment.
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OK someone needs to buy me a drink tonight...I had a bad day. I felt fine this morning and even worked out.... it was the huge blow up I had with my PS office today that has me livid! Basically I may not be able to get my exchange surgery until fall because "he's booked up". WTF? When I hired him to be my surgeon no one said anything about having tissue expanders for 9 months. When I asked him more than once (including last week) when I could have exchange surgery the answer was "6 weeks post chemo or 8 weeks after your last fill". He did say his schedule was busy but no one said I would have to wait sevearal additional months for him to have time to simply replace my tissue expander with an implant! I am beyond mad...I went off on the nurse (the one I really like!). I finally told her this "i have been a trooper through all of this. I get up at 6:30am every morning and get my 4 year old off to school. I work out daily even when I don't feel well. I do my physical therapy faithfully. I do everything a normal mom does for my family including cooking a full dinner every night. I don't complain about this. I don't ask for help. I have tried so hard to be strong and keep everything the way it was before cancer for my family and I have done that for months. All I wanted from you was light at the end of the tunnel. The light at the end of my tunnel was surgery so I could slam the door on BC and have my life back. You just took the light at the end of the tunnel from me. I am devistated". I just find it odd that when I called them on Jan 5th to schedule my BLMX and they had to coordinate 2 surgeons (the PS and the Sug Onc) they were able to fit me in on Jan 27th because I was a new patient and obviously that meant more money. Now that I am an existing patient you will make me wait unneccessarily for months because I am not a priority any more????? I am beyond livid....I don't know what to do. Do I find a new surgeon? The nurse is going to talk with him but I don't see much happening with that. I plan on at least scheduling an appt with the PS to discuss this and my dissatisfaction. Right now they are scheduling for June for saline implant exchange and July for silicone implant exchanges but they won't give me a date until I have had 2 more fills and then see the doc which will take a month at least. By then they will be booking for late summer/fall. Is this BS or am I just crazy? I have a job I have to get back to and they will mess up my STD. In addition I was trying to get all reconstruction done this year because I knew I would max out on out of pocket...now it will go into next year and it will cost me even more money. I am sorry I had to vent. DH is out of town on business...I am alone this week. I have been crying all day. We have to cancel our vacation we just planned with 4 other familes for August now since I am at their mercy. I have to make those phone calls tomorrow. This stinks.........
Min: I sent you a PM. Hugs!
Lilylady: I am in Detroit...you want me to head to the Ford HQ with my people???? It's only 30 min from me! Such crap! If there is anything we can do...don't hesitate to ask girlfriend...we lounge lizards stick together! Also...just saw your post that you are having chemo tomorrow.....is that all set? I hope so......Also I was going to suggest going to the media....do you have a local reporter on the news that goes to bat for people? We do here in Detroit and they expose the bad stuff on people's behalf...just an idea. I just got done watching the movie the Rainmaker a few nights ago (up on steroids late night....). I have seen it before...great movie with Matt Damon. It's about exactly this...th insurance company dening treatment for a cancer patient because they deny every claim when it comes in. UGH! Here I thought that was just fiction.........
BlueCowgirl: I hope all goes well tomorrow.....try to control yourself (are you really strangly excited? LOL!)
Supersally: I am doing well this time around from chemo. No real side effects. Haven't missed a workout yet other than infusion day. I am a bit tired tonight but I can handle that! As far as nail issues, I did Taxotere #2 this week. No changes on nails. I have been icing fingers and toes during taxotere to avoid nail and neuropathy issues. I do know people that lost nails from it.....we will have to see.
ChrissyW: So glad you are chillin' with us gals! That's what friends are for...to ease your mind. Good luck tomorrow...hoping for no "hangover" for ya!
Kymn: Hope you got some rest. I am tired today too...but they called yesterday and told me my iron is now low and so is hemoglobin. I started iron and stool softeners today. I hope you feel a bit more peppy tomorrow!
Kay: did they give you benedryl during the drip? I asked for it because I know I have a history if skin allergies. I had it both times and no skin issues. Who knows if it would have happened or not, but I am glad they gave me benedryl.
Pasmithx2: Welcome to the lounge...everyone say "HI" to our newcomber. Pull up a barstool and hang with us cool chicks! I will buy the first round.....what are ya having?
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mdg, Drinks are on me...what'll it be? If I could, I'd buy you a few for starting this thread...Here's hoping you get some more efficient treatment from your surgeon.
Good luck to everyone else who is getting chemo tomorrow! Yes, even though last week was the worst week of my life, I am looking forward to it because I know it is working. Is that sick or what?
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Hi everyone. Can't sleep. It is 4 am and I am sitting watching The Turner Classic Movie channel. My first chemo is today. Took the 4 steroids yesterday. Terrible headache, could not stop drinking, could not stop going to the bathroom and felt all stressed out, and as you can see I can not sleep. Must be the steroids. Thanks for listening!
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supersally - I have heard horrible stories about people's nails on Taxanes, although the nurse told me it was pointless to stick my fingers in frozen vegetables (bought along just for that purpose) while having it. I rub in cuticle cream everyday then put on a coat of nail hardener - don't know if its doing anything but I don't have probs and it can't do any harm.
I had a rash on my arms that just popped up at about day 14. I just used sorbolene cream morning and night and it went after a few days.
good luck chrissyw and pasmith - hope your hangovers aren't too bad. pasmith - I live on immodium from days 6 - 10 it seems to keep it manageable.
Bluecowgirl - strange the business of really wanting them to give you the chemo. After all the port problems I was just sitting there saying GIVE ME MY CHEMO - The nurse was lovely - she promised me she would not go home till I had it.
Lilylady - keep fighting, you shouldn't have to but I reckon the more public fuss you make the more they will take notice
Kymn - hope you start feeling less tired - I can't make myself do much at all days 4-5 but feel a bit better today and worked from home.
migallen - sorry about the new lump, I also would have thought the whole point was to remove all breast tissue. Why do these people not listen to us!
Maria - Not sure I would cancel your vacation - they will probably only stuff you around anyway and have it some other time. First ask them to put you on short notice cancellation list - they do get cancellations and maybe they can fit you in. Then make much more fuss - write a letter saying he is affecting your mental wellbeing, that he has mislead you, that he is not performing his duty of care- whatever it takes - letters are possible evidence so its always better in writing. You are amazing - don't let them win.
When you get this you think the problems will all be health related - then you realise that these people are basically running businesses and so much is about the money. I am probably being unkind to some of them but hearing all your stuff just makes me cross.
Lots of love to everyone in the lounge. I hope for at least one happy moment in your day.
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MDG, wow, sounds like you needed to shake some things up. I just do not understand the way doctors, hospitals etc think. I think you are such a trooper. I am personally in awe of you. I could not do this with children. You are way more serious than I. Good luck with everything.
I have just started with this Cancer Center in March to get a letter just two weeks after my first appointment stating that they are closing and they will help me find a place that is close to finish my treatments. I start tomorrow and my last appointment with them is scheduled on the 21st of April. This place is close to my work anywhere else is going to be a lot further. Blood done the day before, chemo or herceptin the second day, then a shot the next. My boss is going to flip! He started yesterday when I said I would not be in today due to my first chemo and it lasts 5 hours. He went off because my calendar was not marked in green on the days I was going to be off. I said well right now every third Wed. would I would be off and will mark that green. I said if I get sick and do not make it in I would not be able to make my calendar green on those days. I never realized my desk calendar was of such importance. He did not want my sheet that had all scheduled appointments. Said he did not have time for it. Oh well, we have to remember it is about us getting through all of this. Being well for us and our families. Especially those of you that have young children. I am lucky, my children are older. My daughter call everyother day to make sure I am sane and doing what I am supposed to be doing. She live in Louisiville and I live in Conneaut, OH. about 6 hours away. If I ever need she will be here. So I am pretty lucky.
Good luck with your surgeon.
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Overy13 - sorry you can't sleep, its 4pm here but I'm assuming you are middle of the night. Its probably a combination of stress/anxiety and the steroids. Maybe ask for some sleeping tablets from your onc tomorrow just in case it continues. After tomorrow you will be one down and everyone here agrees that the worry is far worse than the reality.
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Hello
I am new to this site, i have had a 9mm malignant lump removed from breast which was aggressive even though small, plus lymphnodes apparently 1/15. I am currently in hospital has had a seroma, now they think drain sight is infected as armpit has solid hard mass and i look like someone as thrown hot water at my skin as it is bright red and very painfull, looking forward to scan and more needles to drain sight. I am waiting to hear from oncologist to find out what chemo i need. So confused with all the codes etc, hopefully once been to oncologist i will know what my code of cancer and treatment is. I am still living in a bubble and trying to take all the information in. Will the oncologist explain where i get wigs etc from, as i presume hair will come out like everyone else. Any advice well appreciated. Good luck to all of you in the Chemo lounge, I may be coming in for a cocktail or glass of chardonnay soon. :-)
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MDG - thanks for the welcome. I'd surely enjoy a nice Zinfandel.
Jenn_h - I have dexamethasone. I wouldn't say I was hyper, but it was a darned good workout on the days I was taking it! I'm still at Day 8 so I haven't hit the itchy, tingly scalp yet. More fun to come!
PennyCookson - the Immodium doesn't seem to do much so I got Lomotil. Still waiting to see a substantive change.
Chrissyw - you are one TCH ahead of me. Good luck.0 -
Overy13, Marked in green? What, is your boss like 5? Do you have to do it in crayola? People amaze me. I would have told him, yeah, I got cancer *just* to make your life difficult. I guess this attitude is why I am self-employed, lol. If you feel like watching a movie, rent "Office Space". Lots of laughs over silly corporate regs.
Just a few hours to my chemo...let the Xanax begin! Who else has a tx today? Best wishes to all.
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Welcome Sporty13, it is incredible how much I have learned from the amazing ladies here...more than I ever wanted to know about Chemo and cancer, but it has been very helpful and very comforting to know I'm not alone in this. Somewhere here, there is probably someone with similar complications to yours who can answer questions for you and comfort you when you are scared. I am so thankful I found this place, and I still learn something here every day!
If you poke around enough too, you'll find funny threads and see that our treatments have not taken away our senses of humor - It's also good for laughter, which is inarguably a much more enjoyable medicine than chemo
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BlueCowGirl - yeah listening to that stuff I could never work for anyone else. We have no sick forms, no leave forms, my guys keep track of their own leave and I have no limit on sick leave, and now with me sick they are all rallying round and supporting me wonderfully.
The approach I tend to take with idiots who make your life difficult is to say
"I hope you or your family never have to learn how difficult this is, or how much difference other peoples actions can make one way or another."Just sometimes that panics them into thinking Karma might get them and makes them behave like human beings.
Good luck for today
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