March 2011 chemo-lounge
Comments
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Kymn, maybe that condom advice is given to only a/c recipients. Maybe mine is more toxic.
Thank you Annie, I just hope that my stomach is more settle down for my next treatment in 3 weeks.
I hope you all enjoy your Fridays. And Maria, way to go girl! Teaching a class, please give me some of your energy.
hugs,
min
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One other thing I learned yesterday that I don't remember seeing here onsite...the nurse suggested that I wash my clothes separately from the rest of the family, especially on chemo days. A friend who went through chemo two years ago suggested using baby detergent or chemical-free (sensitive) detergent.
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i needed plenty of meds to get through the nausea for the first four days - including the day of chemo. Not only did I have Aloxi, Emend and Decadron before we started, but when I got home I took compazine and still ended up worshipping the porcelain god most of the evening. We called the dr. around 10 p.m., and she told me to take more compazine, more decadron and ativan. That seemed to do the trick.
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I tried my wigs on yesterday and showed husband, - the panic on his face when I asked Does this look OK! But he managed an almost convincing "Actually it looks quite good"
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cellomomof5 - sorry you were so sick. I think we tend to try to minimise the extra drugs we take when maybe we should just accept that we take anything it takes to minimise hangover symptoms.
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awww that's awful Cello
. I'm just a bit nauseous, after i took the decadron and ativan. The nurse keeps on telling me I would feel great the first three days, thought I was imagining being tired and nauseaous. My mom is steaming veggies, making soup, stuffed chicken, stir fry lol I'm trying to stay very positive and hope I fall asleep soon. 0 -
Ok. I don't really drink, so my cocktail of choice will be White Cranberry Peach Juice Cocktail. If I drink enough water, hopefully that will be the color of my pee after the adriamycin...although I have my doubts as to whether it's possible to dilute it that much!
I have food allergies and I'm a celiac....this ought to make eating interesting. I told my husband to remind me to make some brown rice on Sunday since my chemo starts on Monday. Found out today that Aetna will only pay for 12 Zofran tablets a month. Hopefully I won't need 12 a month. I'm not anticipating problems because I know how individual reactions can be to chemo. I have compazine as a backup.
I decided against wearing a wig. I'll wear hats, scarves and I'll probably get some bangs I can attach to my hats and scarves. Bangs aren't too expensive and they'll give me just enough to frame my face. Other than that, I don't care. I'm fair skinned so unless I feel like slathering sunblock on my shiny bald head, scarves and hats will have to do!
One of my parakeets has taken to landing on my head lately.....I keep telling her that in 2 weeks, she's going to try landing on my head and she's going to slide right off! Boy is she in for a surprise! I can't wait to see how my cockatiel reacts to my soon-to-be bald head!
Jennifer
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Damn, damn, damn the doctors who send out orders on Friday at 4:30 and don't think about us having the cancer crazies all weekend. I am telling myself maybe it means nothing and if anything was really wrong I would feel it.
I had my scans this morning at 7am-visited the onc office while waiting to be radioactive. Went over all my questions and got my sched for next week. Port on Mon, Muga on Tues, chemo on Weds. Talked about nutrition and nausea scrips and they sent me on my way. Call at 4:30 today-move back the port install so I can have a PET on Monday and just get chemo in the vein on Weds. Told them no deal. Called back in 10 mins. Cancelled Muga to do the PET on Tues. Chemo still on for Weds. Receptionist played it off as business as usual-
Wouldn't be near as worried but when I made the appt initially I asked about the PET and was told my insurance would not OK it unless indicated by other test results. He also made no mention of it last Weds or again today when i was there in the morning.
The longer the night goes on the more I want to go over to the Stage IV forums and look. I am barely hanging on to a III as it is. Please tell me someone else has went thru this...
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Oh Lily,
I'm sending you hugs and prayers. I wish I was there with you so I can give you real hugs. I havent gone through it but I got the PET as a baseline. Hang in there. It could still be nothing. I had AC through the veins today, it wasnt bad. Can you take ativan or something to calm down. My thoughts are with you.
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Yesterday was 1 week from first infusion and the SE have not been all bad. I am trying to get my nauseous meds right . Was on Emend days 1 - 3 and then Deacadron and Zofran for 4 days. I was told to stop taking them at that point as they only work for the days following chemo. But man did I slide into a sick, nauseous fog! After a day or two of just Compazine (with an ativan in there now and again) I went back to the Deacdron and Zofran combo. That seems to be helping.I feel sick often, but not unbearable, and keep food down. Mashed potatoes are my friend!
Can't sleep through the night. Wake up at 2,3,4 and just can't go back to sleep. Taking the Neupogen shots.No problem or pain their yet, though they may up my dosage. My research nurse thinks the onc went to conservative on the dosage and is worried my wbc will be too low for my 2nd round of chemo. next wed. If it is, she will be ordering me more Neopgen.
All in all, no complaints. Just glad I went back on the Deacdron and Zofran. I was feeling so icky and I am not really sure when to use the Companzine over those two or the Ativan. So much trial and error! Cheers girls!
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lilylady, I had lots of doctor appointments, tests, waiting for results only to have more tests ordered and more doctors to see. From the time I found my lump, Dec. 22 of 2010, to when my chemo began, it took almost two agonizing months. So I have an idea of what you're going through.
One thing I tried to do, and what my ob/gyn advised me the day I was told I had a malignancy, was not go on-line and read a bunch of stuff that was going to scare the crap out of me. So stay out of the stage iv forums. And any threads or websites that are going to produce more anxiety for you.
You are in my prayers. Where you are at in terms of your diagnosis and treatment, still getting tests and waiting results, is a difficult place to be, but things will start to get better. If you are able, do whatever you can to stay occupied with good stuff. I know I was semi-obsessed with all things cancer related as soon as I learn I had it. I read "Anticancer" while waiting all these results, and it helped. I am by no means a Fran Drescher fan, but I read her book "Cancer, Shmancer" (she had uterine cancer) and really liked it. So read, or go to the movies, or rent a movie, or get out in nature and take a walk. Try to get sleep. God bless.
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lilylady - I had 2 liver spots show up on the CT, two weeks later I got an MRI to see if they were mets, a week later they said they couldn't tell and I needed another MRI. Finally after that I picked up the report and they are benign. I told them all along that if there were spots on my liver they probably just said "Jack lives here", but I guess the result is that stage III actually seems quite good news now. Don't worry about the tests, they are just checking, and you are not positive until the results say that you are. They do these test on huge numbers of people and a whole load of them are negative.
During that time I read everything there was to read on stage IV. Its a really bad idea to do that as you start to worry about things that may never happen. Its best to handle the problems that we know exist at the moment, not look too far into possibilities.
I panicked horribly when I was first told about the CT results, then after a few weeks of not knowing I got quite pragmatic about it. I told myself to take a day at a time, and that even if it was positive then there are treatments that now work and that I would be one of the successes.
Please don't worry all weekend, just focus on the fact that you are starting your chemo soon and that will kill the bl**dy thing.
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hello,this is my first post, had lumpectomy and SNB Feb 08 and just met with my oncologist this past Monday. Chemotherapy has been sugggested..Taxotere and Cytoxan 4 rounds, 3 weeks apart, followed by radiation and AI for 5 years. I was not expecting chemo....am stage 2, 2.2 cm tumour, clear margins and node negative, Er positive,,...can anyone advise,,,is this overkill?? I am thinking of refusing the chemo. Thank you in advance for any responses. nancy
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Just to add that I am terrified and my support system ie family, friends seem to be in a denial sort of.....telling me that all will be fine which seems to put me in a spot where I am unable to express how scared I am...it is difficult as I am sure many have found.....I am also a nurse which does not seem to help matters.....there is so much going on in my head that sometimes I feel like I am going crazy.......
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Hi nancy, my sister is a nurse and I worked in hospitals for years. I swear this makes it worse as you just know too much. It seems to depend on the oncologist, but from what I read most seem to recommend chemo. Have a good talk to your oncologist about why they think chemo is the right way to go. Personally mine is stage 3 so I would have chemo anyway, but I think I would want it anyway just so you feel you are doing whatever you can do kill it, but its a personal choice.
I think its quite common that family / friends tell themselves that its all fine, lots of people have it etc. so we all pretend we are coping OK as no-one wants to worry anyone else. Bite the bullet and sit down with the one you are closest too, have a good cry and tell them how scared you are. They will be OK , and just at the moment its you thats important.
I know its frightening but read the posts from previous groups on this site and I think we all find that the idea is scarier than the actual experience. You will be able to cope with it - if you go for chemo it will be 12 weeks of which only about 12 days will be really yucky and the rest just some annoying stuff.
We are all supporting you in thought
Penny
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Nancy - you didn't mention what grade your cancer is - 1,2 or 3: it can relate to how aggressive they feel it is. That may play into the chemo recommendation?
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anniedd, it is overwhelming. If you can just find one person to confide your fears in, it may help. I had lots of people tell me it would all work out, even lots of posts on the board, at each test i had to take, they'd spout how often things were benign, percentages of women who didn't get to the point I eventually got. So I wasn't overly happy with all the ones who kept saying "It'll be ok, it's probably nothing." Because my own intuition (I was the one going thru it) was telling me something different. At some point you have to learn how to tell people that everything is not so upbeat and happy. One woman from work yesterday asked me if I could tell if the chemo was working and I simply said, "you can't anwer that in a simple way." You may begin to hear from a friend or relative who's had canser, and they are the ones who may be better to confide in. They offer encouragement, but understand what you're going tthru.
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Hi Maria,
Hope you are doing well.
My cocktail of choice can be a "vodka and soda" considering somelse is drinking my Grey Goose, straight up with a twist! LOL
Also can you change my chemo cocktail to read 4+TC.
Thanks!
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Anniedd,
I know you're scared, trust me so am I! I have the same diagnoses as you and just had my 1st round of chemo. You know what that means? It means it is 25% over!
Or I have completed 25% of it. Just wanted to tell you that I am on day 5 and it is doable. Not as scary as I thought. Still going for walks, cleaning the house, and taking care of my 7 year old daughter.
WE all have the road bumps a head but at the end of the road I want to know I threw everything I had at this cancer. I can't "regret" not having chemo. Not with a young child. If I were single things may have been different in my choices.
Let us know how you are doing. The people here care.
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Lily Lady,
Thinking of you and sending good thoughts. I hope you can stay busy thru the weekend and no reason to look anywhere but here for support. I have had multiple scans, this past week I had my 2nd PET scan in less that 8 weeks. Concern of very "hot ovary", which has improved. Inital thought was either primary ovanian cancer or met to ovary. Now posibly cystic or just a functional ovary, lets hope so. I will see an ob/gyn onc following chemo for transvaginal ultrasound, and it will be removed if thats whats needed. Good news is nodes have improved after 3 rounds of chemo. Hang in there, hopefully you will have the answers you need next week.This cancer stuff realy stinks, but somehow we will be stronger for it. Big hugs!!
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djls,
Looks like we have the same diagnosis and treatment plan. I start chemo on the 23rd. Good luck to you, i'm right behind you!
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lilylady.. hang in there, I always said through all of this, that I need a personal assist just to manage all the medical appts,paperwork, and the people who assume you have no life other than making and changing appts to suit them. The cariologist that did my echo called me as i was leaving (I was in the parking lot!) and said they had to re-do it cause they "saw something" I said I am outside I will come back in and they said "no" come back tomorrow. I was working at the time and had to take time off. Then they had the nerve to charge me twice! AAAHHH MRI also caught something on my liver, and it turned out to just be cysts that many people have and just dont know. Everyone here is right just take one day, one test, one treatment, at a time. and definitely get the Ativan.
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Nancy it depends on so many things. YOu can see my stats below (Stage 1) and I am on the same chemo regimen you mentioned. I do my second round this week. I had two opinions and they both said different things. One said no chemo and taxmoxifen for 5 years. The other thought there wuold be benefit in chemo plus tamoxifen. I had an oncotype score of 17 which is on the edge of the gray zone. THe one thing in my pathology report that pushed me to chemo was I had angiolymphatic invasion present meaning my cancer had a pathway to spread by blood despite the fact that my nodes were clear. I am also grade 2 which is in a gray zone again. I opted for chemo because I have a 4 year old and want to do everything I can to be here to raise him. My compromise is doing cold caps during chemo to preserve my hair. So far at day 18 post first chemo I have a ful head of hair. I hope it lasts. If your tumor was grade 3 they would probably be more likely to recommend chemo. Age also matters...I am 45 so my doc felt chemo would be a good choice and I am super healthy so she feels I can handle it. I would get a second opinion as well as read and understand everything found on your pathology report. My docs did not really mention the angiolymphatic invasion... I read it on the path report and questioned it. Best of luck! If you do need chemo, we will do it together. I had one round and it was not that bad. I go for number 2 on Wednesday...hoping for the same. Hugs!
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mdg - I think of you as Wonder Woman between your exercising despite how you feel on any given day and NOW with the news that you had surgery on 12/23 and then celebrated holidays with your family without telling them -- wow!! I couldn't have pulled that off...
lilylady - sorry to hear about your family drama. I do think that you'll feel relief once you tell them. Good luck with all of this!
luv2travel - Best of luck with getting your treatment underway. The sooner you start, the closer you'll be to the finish line!
mauimama -YES! to the rescue dog. We have 3 and just adore them. I will definitely be buying latex gloves this weekend - thanks.
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I knew I had more to say! Does anyone else struggle to remember which comments they want to chime in on and who wrote the specific comment? I struggle...
Husker - I am so glad you're prepared to say something next time to the onc. With everything you're dealing with, the last thing you need is his "I'm too busy for this" attitude. I suspect he KNEW he was out of line and that's why he came back trying to make it up to you. If I were in your shoes and he continued with attitude, I'd be asking which other oncs work in that practice and would threaten or even seriously consider switching to another one!
KC&Jsmom - Can you take an Ativan at nighttime to help with the sleeping? While it's for nausea and vomiting, it also helps with anxiety and sleep.
djls - I was the one that suggested you join our thread -- am psyched that you've joined in! Related to your comment re: your bird starting to land on your hair, one of my dog's has growled at my wig -- not on my head but when I'm holding it. I plan to keep it out of sight so it's not "killed" by one of them!
anniedd - I can relate to your comment re: friends and family - not all, but some. I found the lump mid-January and we were visiting a friend soon after. Despite knowing we were dealing with this scare and were really worried, she toasted "Here's to a great 2011!" My dp and I looked at each other and thought "what alternate universe is she living in!"
A few general comments:
At emend.com Merck has "day of chemo" recipes. I'm a vegetarian so most don't apply but there's one I plan to try soon.
I am so ready to stop having hair stylist/ hair-related dreams/ nightmares!
RE: MEDS (TAKE THIS FOR WHAT IT'S WORTH) - a friend told me that his wife was only nauseous the first chemo treatment because she was trying to not take pills if she could avoid it. After that mistake, she was faithful re: the meds and was fine. I followed my onc's recommendations re: which pills to take for the first 3 days and am very happy to have avoided nausea/ vomiting. Granted, it's only been 1 treatment so far. Just wanted to mention this for those who are just starting. I agree with what others have already said -- the fear and runaway imaginings have been worse than the reality each step of the way for me. I wish the same for each one of you. HUGS all around!
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lilylady: waiting for PET results was the worst for me. I was a complete basket case. Hang in there. I thought I was a stage II, knew I had node involvement, and then was moved to stage III because there were 4 involved (they were big). The thing is, our brains adjust to whatever the stage. I second what someone else said, don't start moving yourself prematurely to stage IV.
pennycookson: I like that, Jack lives here. We are in the right lounge.
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good morning ladies,
I'm curious, after my first treatment yesterday, they doctors/nurses did not give me ativan or the deacdron to take home, should I ask next time?. I just have zophran and the other one what starts with C. So far, i'm only having a headache and slight dizzyness.
Anniedd, I know your scared and terrified. My cancer was stage 1 with no lymph node involvement, but my oncotype came back at 30, so yes I needed the chemo. I was not happy about it, but it will save our lives and we will all get through this. I have to do it for 6 months and rads for 7 weeks b/c the tumor was up against the chest wall.
hugs min
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I'm just sending (((hugs))) to lilylady and anniedd. Now that I have had my PET scan, I'm getting that same little bit of anxious feeling I had while waiting for my biopsy results. The PET scan won't change my treatment, but I'm starting to get that "hanging over the back of my shoulder" creepy feeling. I really wasn't worried about it until after I had my PET scan!
At any rate, again, I'm sending more hugs to lilylady and anniedd. Waiting really does seem to be the most difficult part...and it doesn't seem to matter what test you are waiting for!
Jennifer
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Min,
I had my first treatment Thu...no ativan or decadron. I just got the compazine and zofran and haven't used either one, thank god! I take ativan at night (for anxiety) with Ambien (to sleep); but you're right-ativan is also an anti-nausea. I have the decadron but it is for my next chemo treatment on April 1-12 hours before and 6 hours before. I did that Thursday too. I did get a decadron IV the day of chemo. Every regimin is different, but I think you are okay with with you have. Just be sure to call the on-call nurse or whatever your protocol is for the weekend. Don't tough it out. (spoken from a veteran at one-day ahead of you in treatment!)
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I was looking up the nausea meds and found it hilarious that the main use for compazine is to treat schizophrenia-the anti nausea benefit was found out later. I have always been strong minded independent and stubborn--but cancer has made me feel like a mental case so maybe the schiz benefit isn't a bad idea.
Thanks for talking me down guys. Over it-what will be will be. If it's there I will deal with it-- if it's not there I'm buying the next round for the lounge. I do dream of all of us meeting up someday. I helped myself with a little shopping therapy. I went out and bought a BIG tv. Moved up from a 15" to a 47". Never been a TV gal but if I am going to be feeling puny I want something I don't have to put my glasses on to see.
Had decided I was going to stay off today but I am so glad i signed on to see how Husk and Min were feeling. I forgot to look and see if Kym is still pretty SE free. It is interesting how some docs dole the meds out a little at a time and other give it out up front. When I mentioned the Ativan and decadron she told me that was covered in the IV and not really needed at home. I would rather be like Husk and have it there and not need it.
Anniedd-no choice for me on chemo but I know I would have picked whatever the most aggressive treatment is for whatever I had. They can give you the odds of reoccurence ect based on stats for those who have done the chemo/or no chemo but the call is still yours. The chemo is timewise relatively short. we have ladies who have just had their first treatment and some that are going to be getting their second. They are 25% or 50% done..in a month. Read thru their stories almost universally they have all said it wasn't near as bad as they imagined.
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