March 2011 chemo-lounge
Comments
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mdg,
The only reason I brought up the subject of no raw foods (as I was told not to eat them) was because the onc & nurses felt it was better to be safe than sorry. I'm a HUGE salad eater so to not be able to eat salads is driving me crazy, but soon, I'll be able to eat it again. They also suggested eating fruits that are NOT thin skinned, i.e., strawberries, blueberries, grapes, etc., as again, they just want you to avoid getting any kind of bacteria. They said normally eating all that stuff is terrific, but to try to avoid it during chemo. Bummer, I know!!! As are many other women here, I'm a HUGE fan of fresh fruits and vegetables, so it's been hard to not eat raw ones. I've been eating cantaloupe, oranges and bananas though as they have thick skin and are safer. So, every dr. is different in what they counsel their patients on. Maybe mine are just being ultra-conservative, I don't know, but I figured what the hell -- it's only 9 weeks, I'm half-way there, so I can wait til I'm done and then eat all the raw vegies/fruits I want!!!! When I go to the market, I purposely DON'T look at the fruit! It's crazy, isn't it....
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mdg,
The only reason I brought up the subject of no raw foods (as I was told not to eat them) was because the onc & nurses felt it was better to be safe than sorry. I'm a HUGE salad eater so to not be able to eat salads is driving me crazy, but soon, I'll be able to eat it again. They also suggested eating fruits that are NOT thin skinned, i.e., strawberries, blueberries, grapes, etc., as again, they just want you to avoid getting any kind of bacteria. They said normally eating all that stuff is terrific, but to try to avoid it during chemo. Bummer, I know!!! As are many other women here, I'm a HUGE fan of fresh fruits and vegetables, so it's been hard to not eat raw ones. I've been eating cantaloupe, oranges and bananas though as they have thick skin and are safer. So, every dr. is different in what they counsel their patients on. Maybe mine are just being ultra-conservative, I don't know, but I figured what the hell -- it's only 9 weeks, I'm half-way there, so I can wait til I'm done and then eat all the raw vegies/fruits I want!!!! When I go to the market, I purposely DON'T look at the fruit! It's crazy, isn't it....
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Hi ladies. Sorry to have not written in awhile. our internet comp. was down for abour a week . But Im here now. catching up. Lilylady: I think you shoulld go for another opinion because I am and I start taxol next because I have to beg for anyrhing except nausea medicine, they did give me 30 of .05 millg. of lorazapam o take at bedtime you had to take 4 to sleep so I want a better understanding doc as well. Remember we pay them they don't us to put up wit their sh't. April 18 taxol and herceptin 4 times, once weekly/. june r masectomy with breast reconstruct than herceptin rest of 9 months. I asked about double m but surgeon said it doesnt keep us from gettin it any ways. I can get breastreconstruct and go size bigger if i want insurance gives 2 years. Im just a b well see about a c. Any suggests. Khym: I as well sometimes feel insucure with no hair and all with my husband wanting somone else but he assures me its all in y head. I believe so cause he is real good to me. I as well push and do usual houseclean and so on. I hate to ask for help even though he would help more. But if he pisses you off do like me and take your own same as you always would ha. love all my new family. have a nice sunday. be safe, happy, and well.0
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mdg- Again, I'm looking at the literature from the Cdn Cancer Society, which cites the American Cancer Society as one of their resources. They say flat out that exercise is good and they give a list of benefits. Maybe if you look through the American Cancer Society resources, you can find something that the dr's would acccept as reliable and let you be.
I've seen so much that says that even a little exercise can improve your outlook on life and keep you physically strong to counter the SE's. It isn't the time to train for a marathon or take on a major weight training program. But keeping your heart strong and maintaining your muscle mass can only be good. And it can at least make you feel a little in control of your body when so much is out of your control.0 -
I am waiting to get my port in ...not looking forward to this at all....had cancer since 1984 with NED but now 3 reacur ...aromasin has stopped working so 3 months chemo every two weeks ...a bit scared ....oncol syas only side effects is tiredness...anyone in same boat ?
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hey best of luck with it all
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Well, I spoke too soon several days ago when I said I was out of the fog. Any help you could give me with this would be greatly appreciated. I had my 2nd TCH on March 30 and just like following treatment #1 on about Day 10 I developed a rash on my face. This time it is worse. It is a dark angry red with raised welts and what looks like whiteheads. I covers most of my cheeks, nose and to a lesser degree my forehead. You could spot me coming a mile away. I really don't feel comfortable going out.
After the first time my onc said he did not know what caused it - that the Taxotere usually caused a rash on the chest/trunk. I had also gotten a cold sore and he prescribed famciclovir and everything cleared us soon after I started taking it so I thought I had the solution but that is not working now.
I have been online trying to find a solution and have come to the conclusion that it might be a bad case of ROSACEA. I am fair skinnned and prone to flushing/redness but have never had the bumps and pustules often associated with rosacea. If anyone has any experience with this I would love to hear from you. I believe that we are our own best advocates.
It is a beautiful day here in northern CA. I hope you are able to enjoy the weekend.
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pasmithX2 - Same exact thing happened with my hair - about 75% came out in clumps after shower on about day 21 after first treatment. I think we are on the same regimen - TCH. My hair is (was) also very thick and I was hoping to hang in there for a while. Mine is curly and I straighten it so I am hoping that mine grows back straight with no gray!! Have to be optimistic.
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Chrissyw- You're right, I'm on TCH. If you want to go straight, we can trade hair. Only I don't want the grey back either! this is what bugs me about the remaining stubble--usually my grey roots aren't too noticeable but that's all that's left.
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pasmithx2 - On the hair we really are opposites. My grey is all gone but my dark hair is hanging in there - feels strong when I tug on it to test so maybe I will keep some hair, though not enough to go without a wig.
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ChrissyW: I once had a frine with bad rosechea and the demrotologist told her to use unscented dove soap, it worked for her also vitamin c products they say help with that like the face creams. Hope all works for you.0
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ChrissyW and Pasmithx2-I am a TCH also. I am Day 20 and just finished buzzing my head. It hurt like hell for the last 2 days and had been shedding but today working outside in the wind it was blowing by me in clumps so I decided I had had enough. I went in with the scissors and cut it as close as I could.
I got that rash you are talking about but since I am getting the H weekly I thought it was a reaction to that. I got my rash 2 days after the first H treatment which would have made it nine days after the first TCH. When I showed it to the nurses they brushed me off-of course, just like everything else. When I showed them it was only on my chest, neck, face and all thru my scalp they said it couldn't be chemo related. Sounds like they were wrong. Did yours itch? It drove me crazy til it scabbed-I looked like i had a bad case of the measles for 5 days. Still have scabs on my scalp so I can't shave it completely down til I get them healed up.
I get my 2nd TCH this Wednesday and I am hoping it goes as well as the first. I felt wierd and had no appetite but I took no meds. It felt more like a headrush for a couple of days. Oh and the heartburn-I will be prepared this time. Will haevily premedicate for that. No sign ofproblems with the nails yet either. I did ice them wile the Taxotere was going in.
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Hello again from Marcher 2010
I've been scanning the messages, and unfortunately everything sounds status quo
. I forgot to tell you my best technique for getting through the past year -- repressing. I refused to be introspective, ha, it just led to trouble! That and sleep got me through. I don't know if it's the same thing, but the chemo I had (TC) gave me horrible folliculitis on my head. Big rash, hot, itchy, some of it looked like white heads. They gave me antibiotics and some sort of cream.
OK, since you asked, I'm bringing a gin & tonic to this party. Hang in there ladies, it does end, I swear!
Toni
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Had a lovely weekend away with mum and sister - as promised some quotes from mum:
"I had always thought I would be most upset if something happened to your brother, but now I realise I would be really quite upset if something happened to you"
I was going to say how lovely your sister's hair looks, then I realise that would be a bit tactless so I didn't say it"
( you just did mum)When getting out of a car parked close to a fence - "Mind your boobs Penny, oh I mean mind your boob"
On the what can we eat subject - I would not eat undercooked meat or fish, I tend to avoid soft cheeses which have high bacterial counts, but I have been eating raw vegies, salad and fruit - after washing well to get rid of any chemicals, and also I eat nuts.
Its funny how many different opinions there are, but I have not been advised to avoid raw fruit , veg, nuts. I worked in a bacteriology lab for 13 years before I moved into I.T. and the foods most at risk of high bugs counts were the ones I now avoid + also shellfish. Having said that I guess we all need to take the advice of whoever is looking after us - maybe there have been new risks identified that I am not aware of.
I hope everyone has a good week and gets all the SEs sorted.
I saw little brother at the weekend - he is planning on releasing the song on his new album and is going to contact the pink ribbon people to see if he can donate a third of the royalties to them - will keep you posted once its recorded.
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Penny, your Mum is priceless.
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Your mum is too much, Penny. Makes mine - with her comments (when my hair fell out) about how I seem to have inherited her "pointy head that goes on and on in back," seem positively bland in comparison.
On the food subject, I was not told to avoid anything! Even manis/pedis. Go figure. I've been staying away from my beloved sushi because somehow that just feels like common sense, and I do my own pedis anyhow. But otherwise, I have to confess I just don't worry about it. If it appeals, I eat it.
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Penny: Yes your mom is priceless......I can't imagine if we got our moms together what kind of conversation we would have to listen to. I guess I would bring a bottle of tequila or something equally strong for you and I to drink so we could endure the tasteless comments. That's also great about your brother's song! We all want to hear it!
Lily: sorry about the hair. I used OTC Prilosec for the HB the day of chemo and the day after and it seemed to help. I had no issues after taking it.
I am trying to get psyched up for chemo on Wed. Who else is drinking with me this week? I keep saying "you will be 75% done after this one...it will be down hill after this". I am dreading it....ick! I just want to be done!
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mdg, I'll be drinking with you this week. Tomorrow's my second cycle - hoping it will go as smoothly as the first.
Convinced myself that I was going to be one of the lucky ones to keep my hair, having suffered with the cold cap, but found it coming out in handfuls this weekend. I'm shedding more than my dog! I can't bring myself to buzz it yet, still hoping enough will hang on in there. I'm just so impressed with the bravery of all of those would have just gone for it. Thankfully, Natasha (my Russian wig) has arrived just in time.
Penny, loved the Mom comments and can so identify. What I can't understand is that although I'm the one going through this - its still all about her. She has decided that she really needs to be here for me so is moving from LA to London for 7 weeks to care for me - cuz its what she feel she needs to do. She also needs more space, so I've got to rent a larger flat for 7 weeks so she can be comfortable taking care of me!! Urg!!!
There are so many other posts I want to respond to but am at work trying to squeeze in a whole weeks work into one day.
Wishing you all well. More tomorrow.
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Hello everyone! Penny, your Mum is something else. (That is something my mother would say haha!) Any way, not to get anyone depressed, but my mom has bad Alzheimers and I can't really talk to her at all, so even if they don't say quite the right thing, enjoy them while you can. I know how badly I wish I could lean on her right now even if a lot of times she was quite tactless in what she said. (I remember she used to tell me my legs weren't too fat, just too short. I do think she reserved these kinds of comments for her daughters. I never heard her say anything like that to anyone else.) Hope everyone has a great week. I am free until Monday for chemo and hoping for a good week. Was sick all weekend after chemo #2 last Monday. Or maybe it was something I ate. Beautiful weather here today, going up to 85. Planning to get a little sunshine.
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good monday morning ladies, I am lying in bed drinking coffee and watching elen. The fog is finally lifting after chemo number two on thursday. I cant believe i still have to do this 4 more times god i just want it over. I am very thankful not to be feeling super sick today I just havent found the right meds to keep it away . I still feel emotionally week right now and i hate it. one of you lovely ladies said its best to repress your feelings for now, I think I should do that. my DH is filling my physical needs ie food,water meds etc but not feeling the emotional support I need. maybe I am just too needy right now and shouldnt expect that but who else can i get it from you know..I find it frustrating that my life seems to have screached to a halt for the time being but his life seems to be carriying on just as always. He still goes out, does what ever he wants is it wrong of me that this is upsetting? I dont know I need to stop all this stupid boo hooing and get on with things.good luck to all going in this week
hugs Kymn
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Kymn - I'm right there with you, girl. Just had #2 on Thursday and felt weepy and emotional and weak and wanted my mom all weekend. Fortunately, she is nothing like Penny's mom. Penny, I'm sorry to say, I did laugh out loud at some of your quotes. Sorry for you, but glad you shared with us for a laugh. Kymn, I feel the opposite. I want my DH to go out and do his normal stuff. I feel so guilty that I'm not up for going out to eat, doing something, whatever that I just want him to go and enjoy stuff by himself and not feel like crap and be trapped in the house. I know what you mean though, you feel as though your world has stopped and everyone else is on their merry way. He looked at me with such hope and asked if I wanted to go for a ride in the car or a short walk with the dogs and I had to dash his hopes. It was all I could do to get my stinky, sweaty butt in the shower when he went to hit golf balls.
Maria - hang in there. The only thing getting me through the weekend was thinking I was 50% over. You will be 75% over this week and well on your way to a new healthier normal. You can do it!
Lilylady - hope you head to MD Anderson or similar for another opinion. It can't hurt you to have more information. They see such a high volume of different cases, they may be far more supportive and familiar with your situation than your local docs. The fact that they are not giving you sleep aids, anti-anxieties, etc. sucks! That seems to be standard of care for most oncs.
Actually, my onc seems to be pretty easy going regarding food, drinking, etc. I asked him if I could drink during chemo and his response was "well, not on the day of treatment. and not more than one a day" - YIKES! I have had a few, mere sips of DH's wine when out to dinner and one glass of wine the day I shaved my head. I haven't eaten raw fish and wash fruits and veggies well when eating raw. Had a pedi, but no cuticles trimmed.
Kymn - how did you get the stubble off? My stubble is itching and I keep lint rollering it, but not seeing too much come off.
Hang in there, fellow loungers, we can do it!
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Yes, I have the same stubble question as Supersally. Mine is *slowly* coming off but I have clumps of stubble that need to go. Do you shave it with a razor?
Also recovering from treatment on Thursday. This round #2 was slightly easier for some reason. Perhaps less anxiety this time. I am also half way there!!!
Happy Monday to everyone
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supersally I had DH use his electric razor on my head then I used a razor he did the back I did the front and sides used lots of shaving lotion. I have no more pain the stubble was really hurting me to but I really really really hate being shiny bald
wont let anyone see me now not even DH after I showered off the shaving cream I immediatly put a cap on and havent let anyone see me since 0 -
Maria and adangel I will be joining you in the chair tomorrow for my third cocktail. It will be three down and 3 more to go. I envy those of you who are only having 4 treatments.
Had a great weekend. DH and I went to the Great Smoky Mountain National Park near my home and I road my mare 20 miles yesterday. We are both tired today, but it's a good kind of tired.
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I am having my third on Friday, also 3 down and 3 to go. I am on the same as you Jules59. It seems a long while doesn't it
I don't get in the least fed up with my mum's comments. She is extraordinarily tactless, but I know loves me heaps and my sister and I have become kind of used to her weird comments. My sister is a nurse and so I am very lucky with my support network. She gve me my Neulasta jab and lots of sound medical advice.
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Jules59 and PennyCookson,
I just had my 5/6 TAC on Friday. Usually my worst day is today (monday), but I think this has been an easier day, than the earlier cycles. Seems like it has taken me forever to get there,and like you I so wish I was done at 4 treatments (even told my onc I was quitting after 4). Keep positive, your almost 1/2 way done, second half seems to go alittle faster. Enjoy the good weeks.
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Kymn every time I read your post its like looking in a mirror. My DH just cant figure out any of this emotioinal stuff. I think I just married a selfish guy and there is no turning back. Told me last eve that the boat goes in the water in another week and he hopes I am ready ( I am 11 days post op) or he will just have to go alone. Feels like if I dont hurry up and get better I will just be left sitting here doing the cancer thing alone cause he's off to have a good time.
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Sorry ladies. I didn't mean to boast about being half way there. I'm playing whatever mind games I can to keep myself positive and I know that others have tougher treatments. None of this is easy, but we will all make it, whether it's 4 or 10 treatments.
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No worries cathyjoan - glad you are half way there, its actually good to hear that people are on their way through it, we all have different aspects of this - there are always people worse or better off. One of the strange ways this site improves my state of mind is that when I look there are always people much worse off than I am which stops me whinging.
Without wishing to be sexist - we would be hoping for too much for our men to understand the emotional thing, they mostly don't mean to hurt, they just dont get it. I keep thinking that if I miss out on stuff this year, I am going to do so much next year he won't be able to keep up with me. We were due to do the Canning Stock Route in August and have had to cancel (Its a 20 day drive across the Australian desert - mostly on sand, 4WD, and with no bathroom, shop or medical care for 2000 Km) I figure that would be risking too much even though I will have just finished the radiotherapy. - but next year I'll be there!!
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thats what I say pennycookson...next year I'm gonna kick some ass!
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