March 2011 chemo-lounge
Comments
-
In addition to gargling with salt water, chewing gum or sucking or some hard candy (especially lemon flavored) is good too. That stimulates saliva which helps get rid of the mouth sores. What chemo are you on? Are you almost done?
0 -
Thanks ladies! I finished my AC treatments 2 wks ago and next Friday will start Taxotere for 12 wks at 3 week intervals. I guess I was hoping it wouldn't get any worse than in previous weeks but maybe it's the cumulative effect... I also think my flossing is aggravating things. I bought a waterpic but have not mastered it (I end up drenched!). I have biotene and gum and will keep saliva flowing. I will also start with the salt water gargles. Thanks a bunch.
0 -
Silia- chewing gum helped me alot. I also use the biotene and periodically swish with baking soda. I just had my 2nd taxol, after 4 A/C, and the mouth sores have NOT been as bad with the taxol. I hope the same happens for you on the taxotere.
One time, I made the horrifying mistake of putting sirracha on my tacos...did not go well for the mouth sores.
0 -
It took me some time to go back over the posts of the last few days. After TX4 (my last) I was more fatigued than ever - had a hard time walking up even slight inclines - very shocking but since I am now finished for now with the chemo things should get better.
Never got the mouth sores. I had some start but disappeared before they broke out. Was interesting to read that lack of saliva can cause them. This is a problem that I did not have as I have had so many days of low grade nausea and a SE of the nausea was excess saliva which is also tough to deal with. There are so many little weird SEs with all of this.
I am now scheduled to have surgery on June 1. This is all moving so fast but I am glad to get it over with. I know most of you have had surgery already so any tips would be appreciated. I am having a lumpectomy near the chest wall so maybe I won't feel it as much. I am also having some removal of an ADH lesion and was told that not all of this could necessarily be removed. I am somewhat confused by this.
Since I had the chemo first the good news is that they were able to tell that the chemo worked. The MRI showed "complete response" but the mammo and US still showed a 5mm spot that could be residual BC or scar tissue - won't know until after the surgery. I was also warned not the break out the chempagne after surgery even if nodes were clear because pathology could find something on closer examination after the surgery.
GOOD THINGS ABOUT BEING BALD
1. The shower on the scalp feels awesome.
2. Can swim several times a day without having to worry about blow drying hair. Would sometimes no swim because I had just done my hair.
3. It really is quick to get ready.
As for the wig, it looks so much like my own hair that no one has noticed. I only have one friend here that I am close enough with to tell about the BC so no one knows. I still feel self conscious.
Hope you are all enjoying the weekend with few or no SEs. Again, thanks to all for the posts. You have all been an inspiration - wish I knew you in person. I don't know how I would have gotten through this without you. Maria, special thanks for starting this thread.
0 -
Silia--the dentist told me that this would be one and only time that he would tell me not to floss. Flossing can create tiny cuts which are openings for infection. With a normal immune system they aren't a worry, but on chemo even the smallest infection can become a big issue.
0 -
Chrissy - my surgery won't be til Sept so I'll let others weigh in with surgery tips. When they were saying today might be the end of the world, i thought "well this way I'll avoid surgery..." always trying to look at the bright side - lol. Loved your list of upside of going bald. Does anyone else still get out of the shower and put a towel on your head? I do!
Pasmithx2 - thx for the flossing tip. I didn't realize I shouldn't do it at all.0 -
I use a similar approach to pasmithx2.
baking soda mouth washes, biotene mouthwash, (and spoonfulls of vegemite). I also just alternate between the three a few times a day.
If I catch it early mine don't ulcerate. The chemo nurse also said you can mouthwash with coke?If its thrush (white spots) rather than straight mouth ulcers you should really get treatment from your gp. A friend who went through this and had terrible mouth ulcers used myrrh she said it was the only thing that took the pain away.
Be careful about anything that leaves too much sugar in your mouth as it can encourage thrush. My sister reckons, pineapple, cut into chunks and frozen - suck them and they encourage amylase production.
Good advice about the flossing - I'll stop doing that now.Chrissy - so glad about the chemo working - it makes us all feel positive.
Re surgery:I had a mastectomy and axillary clearance in January. I had very little pain, the drains are annoying while you have them but its only a matter of days. I had a little cloth bag I hung over my shoulder with the drains in - that way you don't notice them so much ( and don't get up without them!). I had 2 because of the node clearance you will probably only have one anyway. I was back at work as soon as the drains were out (which in my case was a bit longer - 10 days), could have gone back sooner otherwise. It is good if you have someone who can help you have a shower, otherwise its difficult to cope with the drains. Put the drains in a plastic bag and hang them on the taps, then get your helper to hand you things.The surgery is a piece of cake compared to chemo.
I am almost over the infection - hopefully enough for me to get my 5th TAC on Friday, also finding I am now out of breath walking up a slope - horrible to feel so unfit.
lilylady - have you recovered?
0 -
re: surgery-- as PennyCookson said, the drains can be the most irritating part about the surgery with node removal. My sis-in-law heard about a post-surgical camisole and got it for me. It's really stretchy so it's easy to get in and out of when your arm movement is limited. It has two pouches to hold the drains and a velcro strip to position then where you want. And it comes with a couple of "fluff puffs" to use a breast form. I had to pull out some of the fluff to look balanced. It was enough that I could go out for a bit without feeling self-conscious. It's not beautiful, but I used it even without the drain pouches until I was ready to look at mastectomy lingerie.
http://www.amoena.com/us/Products/Postoperative/Medical/Camisole.htm0 -
Thanks to all for constipation advice-have to say I have a real appreciation for what many of you have gone thru. I got a a little book to write all the tips down as my memory seems to be only 1 post long! If I never have to read a label again that says "Gentle Overnight Relief" it will be too soon. WTF!!! I want this crap (literal and figurative) to move NOWWWW!!! Not sure what actually made it happen-I have had the Big D ever since I started cancer and it is way easier to deal with. I will be way more on guard now.
I go out bald all the time. I have a slight tan and now a few freckles so it matches my face-no tan lines for this hot mama. My head has a nice shape-no dents or bumps. Although, I will say it looked better before I wiped out half my eyebrows this week. Washed my face and when I went to dry it half of them (outer half) came off on the towel. I am left with 2 little comma-like things that make me look slighty surprised. I have experimented with drawing them on-harder than I thought it would be. Looks more like a brown smear...may need to get some professional advice.
This will be the biggest week of my cancer life-I get scanned on Tuesday to see if the chemo is working. Onc says EVERYTHING must be shrinking or we will have to make new plans. Breast tumour has undergone a huge change since my last treatment so hopefully the liver and lungs have as well. This will be a CT scan so get to drink the huge cup of West Va well water out of a tin cup tasting stuff (my apologies to any of the lounge residents who live in W Va). My sister tells me it is way better than the old fake milk shake tasting stuff. Anyway-I will be bugging them to call me as soon as a report and CD are ready to be picked up. I am NOT waiting til Fri onc visit. Last scan was when I found out I was Stage IV. They would not give me the report-only the CD-which of course I couldn't interpret.. Since I was a scared newbie I just passively said OK and walked away. I am hoping they don't make CCB(Crazy Cancer Bitch) come out and play=she hasn't been out in a while but still remembers all her moves.
I am so glad so many of you are finishing or have finished and starting down the road to mental recovery. It's almost like "What do I do with all this time that I have peviously spent on cancer stuff?" Between dr visits, treatment times, SE downtime, surgery/recovery-thats a big chunk of time. I would bet that every one of us had thought-"I don't have time for this crap!!" Well, we had to make time. So if we had to make time for bad stuff why wasn't I making time for good stuff?
Last thing I promise...I hosted Canasta (card game for old ladies) last night. This is a group of 70+ year old ladies that live on the same street as my BFF. She roped me into this a year ago as a sub and now I am a regular . Anyway, as host, you make a full meal and at least 2 desserts-these ladies eat like construction workers and don't have an ounce of fat between them. I have so lost my sense of taste that cooking has become a terrible and somewhat embarrassing job. I am a great cook and an even better baker so I was mortified to see them all repeatedly salting an peppering-again and again-what I thought was great food. I still cook for my folks 3-4 times a week but they like bland stuff so it hasn't been a problem. I can't taste salt at all so I err on the not enough side. Anything sweet is sickening sweet. Salad dressings-which are so much a taste thing-my homemade vinagraite must have tated like pure vingar judging by how much salad they left on their plates. Next time take out pizza or hire a taster!!
0 -
Greetings March gals
I am zipping in from the April gals threads. Since you are all astep ahead of us is anyone willing to share your best tips?
0 -
Merilee--Share, share everything with the April girls. I've learned so much from the March ladies, who are in the thick of it with me. Sometimes it's simply good enough to know that someone else knows what I'm talking about.
0 -
Hey ladies..hope you are all having a great weekend. The weather has been perfect here! I am doing OK but the tired leg feeling is kicking my butt! My legs feel like I ran a marathon even when I did not workout. Yesterday going up the stairs I had to stop twice before I got to the top because my legs were burning so bad. I wonder how long that will last. Last night the rash came back again on my torso! I stopped taking the oral steroids about 2-3 days ago and as soon as I stop, the rash comes back. It is so frustrating! I am going to keep trying the topical steroid and see if that makes it go away. I don't want any more oral steroids! I was up itching for a while last night.....and having night sweats. Oh joy!
Silia: I hope the remedies worked on the mouth sores. That sounds painful! Let us know. I too avoided flossing for a while because I noticed my gums got really sore. I guess I can resume that now...I better as I have a dental visit I need to reschedule! Congrats on finishing AC. That's great. I survived Taxotere...you can too!
ChrissyW: I feel the same way on my leg fatigue...it is setting in worse now that I am done with chemo than it did during chemo. I am just going with the flow.....it will sooner or later go away. I had a lumpectomy before my MX. It was not that bad. I was back to teaching aerobics in about 10 days. I did notice it was tender and things did tighten up even through my arm. It took some time for me to not feel the tightness in my arm but by working through it and stretching/exercising, it was gone by the time I had my MX a month after lumpectomy. I personally did not think the recovery from the lumpectomy was bad. I just avoided using my arm for a week and was gentle with it. I did take vicodine for about 3 days after my lumpectomy. I am glad the chemo is working and showing good results! I too am so glad I started the thread...you ladies have been my support and have helped me more than I can ever express. I so wish that miles were not between us so we could meet up at a local lounge and have a big group hug, a few bottles of wine and girl talk......despite the miles I do feel such a connection to you gals! You are my girls!!!!
Penny: I agree the surgery was not that bad....I had bilateral mx with TE's in Jan. I did really well. Yes the drains were a pain but I only had mine a week. I healed up quickly and was back to walking 2 weeks after surgery and back on the elliptical 1 month after surgery. Chemo is more annoying than the surgery was because of all the crazy side effects. Chemo plays mind games on you...I was petrifed of chemo. Yes, I was scared for surgery but once it was over, it was over. Chemo is the gift that keeps on giving...I cursed chemo when I needed that darn enema! I am Italian...can you all picturing me gesturing with my hands and swearing in Italian cursing chemo? LOL!
Lilylady: I just crack up at your sense of humor and your posts! I love the eyebrow comment especially! My L eyebrow seems to be shedding a lot...the R one a little. I have been filling in with pencil but am worried I will look like Uncle Leo on the Seinfeld episode where Elaine drew in his eyebrows for him...his dr. looked at him and said "there's no need to be so angry"! Did anyone see that episode (please tell me someone knows what I am talking about!!!). Every morning when I pencil in I am careful to not look "angry". Some days the brows look OK - other's they are too thick and I can't get the pencil off without a good shower so I have to go with it for the day! So this is a big week....I am sendind every possible wish/prayer your way for good scans and good news. PLEASE let us know what happens......it will be a long week for all of us waiting to hear from you. I can totally relate to the food thing....I still have tastebuds that are a bit off. I have to ask DH how dinner is everynight and hope it's not gross since I can't taste well. I started a cooking blog but had to put a few things on hold since I can't taste the darn food! Too funny.....
Merilee; My biggest advice is don't sit and take the side effects. Once you have an issue, find a solution through the boards or through your doctor. I had an arsonal:
take prilosec day of and day after chemo for heartburn, take Senakot S and stool softeners the day of chemo and for several days after for constipation, take claritin and aleve the day after chemo and for a few days after that to avoid bone pain from neulasta, have lots of comfort food on hand (for me it was home made organic soups loaded with veggies) for the days after chemo, have lots of whole grain carbs on hand for days following chemo, drink TONS of water the day of chemo and days following to flush the chemo out of the body.
Each person responds to chemo different so after you have your first round take note of side effects and issues and seek solutions for the next round. That's what I did. The first round was the worst for me but I solved my problems after that and then it was not so bad. Good luck!
0 -
Hi girls...lots of posts to read as I have been away from the boards for a few days. School is out Tuesday at 11:30, which is great. But so much to do in the next two days. We have honors night on Monday and have much to prepare for that as I am one of the main presenters. That will be interesting. I will be at a podium in front of approx 150+ parents/guests in my wig. Which they have all seen, but first public presentation I guess. My wig is so much "cuter" than my old hair. I went from darker blonde with highlights, to platinum blonde. I felt like a fake (still do), but get lots of compliments. Most of the kids just thought I dyed my hair and got it cut shorter. In April we had a walkathon for our local mentoring program (I am coordinator) and the board decided, if I approved, to have hot pink shirts in my honor. I agreed and they made note that it was in honor of my "battle with breast cancer," so then most of the middle schoolers knew, but have never said anything. Then the coverage of the event was in the newspaper, front-page. (Remember I am in a town of 2800-one school district-and am counselor for all the the kids K-8, which is about 500 kids). So then got lots of "so sorry; didn't know;, etc"
Friday one of the third grade girls said, "My brother said you have cancer." Her friend said, "Is that your hair? I bet it's not!' This is the first I've had any sort of comment like that, although I figured it would come sooner or later; just not quite so rudely or bluntly. I told them that I did have cancer but I was fine now (honestly, the lumpectomy removed the tumor and I had no node involement, so technically I am cancer-free and all this other chemo crap is to make sure it stays away, right? As for the "fine" part, that is certainly debatable, but we're talking 8 year olds here) I told the second girl that YES, this was my hair. I just have a new look. She says, "I bet it's a wig. Pull it up!" Then I told her that was an inappropriate thing to ask and that I had already answered her question. I let the teachers know, since it will probably be repeated. I told them I was okay with them saying I had canser (or I had been sick) but I am fine now. But the hair part is nobody's business and I will not entertain guesses from adults or kids.
The new problem is this...speaking of rocking the bald look (which I too will not do)...Wed I am one of the sponsors for my son's HS music trip to Seattle/Vancouver. On a bus. They know I have canser too, but have only seen the wig. Obviously I cannot wear the wig 24/7. I have some hats/scarves, but have not worn in public. Only in the yard. It will be more my own self-consciousness. I told the director I will probably be the one on the bus, in the lobby, under the umbrella. I have one more chemo treatment, delayed for this trip, on June 3. Have noticed the cumulative tiredness, heavy legs. But I am determined to go, so as long as bloodwork doesn't fail me on Wed, I'll be hangin' with 35 HS boys and girls on a bus for 18 hours, there and back. Crazy, huh?!
For mouth sores, I have used the baking soda rinse. Could not handle the salt in the mix. Husband is a dentist. Both or one or the other is fine. I never got mouth sores so I quit the rinse altogether after about the first 3 weeks. One popped up this week and I rinsed for several days d it went away. He says no flossing becuause of the little cuts it can make. Also no dental work during chemo unless you have talked to onc first. All that is supposed to be done before you start, or delayed until finished.
Constipation-been there, had that. No fun. All the advice is good. This is long enough for now. I appreciate all the comments on where do we go from here, re-evaluating, one step closer, etc. Just need to remember what meds I need to take right now (I'll check my list) and put thoughts into words later. Have some graduation parties to go to in a little bit. I hope I can get back on either tonight or tomorrow. And maybe from Seattle once I've survived the bus ride!
Love all you gals and your determination and honesty (I will not say how strong you are-that get's old, doesn't it?!) You have gotten me through some tough days and nights.
0 -
Merilee, some things we March girls seem to have learned along the way:
Some women get a flushed, red face at chemo time and think they are getting sick, but is often just caused by the steroids and usually goes away when you stop the steroids.
Some of us take steroids for several days around chemo treatment time but then experience some anxiety when the steroids are stopped. In my case, I mentioned it to my onc who had me taper off the steroids more gradually. I also took an extra Ativana day for a couple days to help me get thru the anxiety (I usually take just one at night to help me sleep).
I also found that taking over-the-counter heartburn medicine like Prilosec along with my doctor perscribed anti-nausea meds was much more effective in helping me feel better than just the anti-nausea meds alone. It took me till my 4th treatment before I realized this combo was so helpful.
0 -
re: wigs... I have a friend, quite a good one, who has been great about helping me in any way. But she has this thing about my wig. She has to comment on how good it looks every time I wear it around her. And for some reason she needs to tell other people how great it is. These are people who may or may not even know about the cancer and would have had no clue about the wig if she hadn't told them. Why does she *need* everyone to know it's a wig?!?
I need to figure out how to tell her that the entire purpose of the wig is to let me feel normal in public and constantly talking about it to everyone, whether or not they need to know, makes me feel like freak. If I wanted everyone to know it was a wig, I'd have gotten something that was obviously fake hair.
Don't mind me; I'm just venting. I don't have many people around who understand what it's like.
It looks like it will be a nice day and I want to enjoy it since the clock is ticking. Chemo #4 is this week.0 -
OK ladies...I am adding a laugh for the day since some of us are losing eyebrows. Here is the link to the Seinfeld episode I mentioned above about the eyebrows. Please watch and laugh with me! I think about this every single morning when I am connecting the dots on my thinning eyebrows:
http://www.youtube.com/watch?v=FevMimZyeLI
I am so worried I will look "angry" when I get done with the pencil!!! Too funny!
Husker: You are wearing me out with your week of finishing school, presenting and the bus trip! Man girl you are a dynamo! I hope the week goes well and you manage to have some fun along the way!
Pasmith: You need to have a delicate conversation with your friend. Just be kind and honest. She probably just wants you to feel good about looking good with the wig. I would feel uncomfortable saying something to her too, but you have to. YOu will be in that wig a while and it will really drive you crazy for the next several months. I hope the conversation goes well.
OK I need to get psyched up. Tomorrow I get my port out. I am not too freaked out yet, but I am sure by tomorrow morning I will be all full of nerves. I am going to try to go for a short walk in the morning to blow of some steam before I go. SInce I can't eat breakfast I will skip the morning workout - maybe a leisure walk with some relaxation music will be better. Wish me luck......I am not excited for another surgical procedure.
I hope everyone is feeling well and had a good weekend. Who has chemo this week?
0 -
Hello-
I had surgery before chemo....it seems now like it was very easy compared to this! Really, the best advice I can give is to sleep in your recliner and get a cami to wear to hold the drains. The drains are awkward but once they are out, it is quite a relief. Two more Taxol to go....counting down the days!
0 -
Who could forget Uncle Leo's eyebrows!! Mine look quite forlorn so I will start to try and fill them in (with a light hand!!). I am also in the chair this Friday SP feel like I'm trying to pack fun into this week since anticipate being "down" next week.
I tend to reference my wig (to friends/family / not acquaintances or strangers). Yesterday I was at a phillies game with family and in the car kept singing a version of will smith's song "gettin' wiggy with it" for example. But there's a big difference between me bringing it up and someone else volunteering it. Good luck with that conversation.
I know I had more to say but blanking at the moment. Wishing all a good week.0 -
Who could forget Uncle Leo's eyebrows!! Mine look quite forlorn so I will start to try and fill them in (with a light hand!!). I am also in the chair this Friday SP feel like I'm trying to pack fun into this week since anticipate being "down" next week.
I tend to reference my wig (to friends/family / not acquaintances or strangers). Yesterday I was at a phillies game with family and in the car kept singing a version of will smith's song "gettin' wiggy with it" for example. But there's a big difference between me bringing it up and someone else volunteering it. Good luck with that conversation.
I know I had more to say but blanking at the moment. Wishing all a good week.0 -
I went to a graduation party last night and sat outside with friends at a picnic table under a tree. A low-hanging tree. I was stooped over trying not to bump my head. They kept saying, "Watch your head! Don't want you to bump it!" My DH said at one point I must have snagged a hair in a twig and my wig tipped a little. I was scared to death (and so was he) that my wig would just lift off and hang from a branch! Thank GOD that did not happen and I sat down and stayed there. And had a Mike's Hard Lemonade in front of one of the doctors from my family practice clinic. (Not mine but he goes to my church!) I only had a few sips...too nervous about the potential platinum RAT swinging from the branches!
0 -
Huskerkcc--I can imagine your stress. I'm not sure I could have stayed under the tree knowing that one false move could separate me from my hair!
I had a crazy dream last week that I was out in a wind and then was in a room with other people. I turned my head and my wig swirled to one side until I grabbed it. I ran off to a washroom to check it in the mirror and that's when I realized that a) I had it on sideways the entire time and b) it was black which is not a good colour on me. I was ticked at my sis-in-law for not telling me it wasn't on straight. I'm sure it must mean something, but I'm not sure what.0 -
Please everyone say a prayer for me tonight-I get my scan tomorrow to see if chemo is working.
0 -
Will pray very hard tonight and tomorrow. You deserve great news, lilylady. Big hug.
0 -
Lily: Prayers will be said......we are all thinking about you!!!! Please keep us posted! Clean scans, clean scans, clean scans, clean scans.........
WHile you guys are having dreams about losing wigs...I have dreams my hair falls out after chemo and after working so hard to keep it with the cold caps. I had a nightmare last week that I bumped into something with my head and it took out all the hair on one side. I woke up and sat up in bed really fast....heart pounding. I guess BC makes us all have crazy, scary nightmares.
Silia: I am glad someone knows Uncle Leo.....I laughed so hard the first time I saw that episode. Now I feel like him. Who would have ever thought I would compare myself to Uncle Leo.............lord help me!
0 -
Lilylady - thinking of you - good luck with the scans
Maria -I also hate any surgcal procedures, but the port extraction will be fine - I believe its really quick. I am due to have my useless one out on 15th June.
My next chemo is Friday - so hoping they will do it as I am still on antibiotics.
Isn't it weird how the dreams focus on hair, Kristy - the tree must have been scary, I wore mine to a wedding on the top of a hill in a park near perth - so worried it would blow off down the hill.
Silia good luck Friday - one step closer.
0 -
Lilylady - prayers for good scans tomorrow!
Maria - good luck with port, one more step to cross off your list, yeah!
I, too, have dreams of wigs and hair. Love, love uncle Leo - perfect reminder. I was at a horse show in east TX with wig and hat and thought I'd lose them both and scare some kids - ahhh! I will probably rock the gi Jane look, soon, like this weekend when it is 90+ degrees. No, I am happy to wear a scarf with a fedora around places. I kind of like wearing it to work because I think it's a good reminder to my crazy workaholic boss as to why my head's not in the game. I'm not having much patience with the wigs, especially since I finished chemo last week. Plus I'm loving all the scarves. I had my mom trim my head again with the clippers today. I had done so myself probably 3 weeks ago and had some crazy 1/2 inch long pieces that I missed so wanted to even it out. Also, going to start taking regular pics so I can see progress.
Best thoughts & prayers tomorrow, girls, thanks for being there for me!0 -
PS, I think the meds make the dreams much more intense. I wake up some mornings and feel as if I spent the night at the movies!
0 -
I'll pray for you today, Lillylady. Time for some good news. Also praying for, Maria. Hope your port removal is a breeze.
Today I go to the chair for TAC #5. If you have any prayers left, send one to me so that the nurses can get an IV started easily this time. Last time it took 3 different nurses and about one hour to get it done.
I have crazy dreams on the nights I don't take Ambien. Mostly dreams about poisonous snakes. I don't think I need a dream interpreter to figure out what those mean, do I?
0 -
Good luck Jules - hope they find a vein first time - you are a couple of days ahead of me
0 -
Prayers for you LilyLady, and my best thoughts and wishes for all clear on the scans being sent to you. Finger, toes and more crossed.
Prayers for you too Jules and Maria, and everyone on the thread.
Maria, I think I may have jinxed myself. I have said that the port was a really good decision because I've had no problems; I have tiny veins and I have to get Herceptin for a year. And now I'm afraid I may have an infection in it. If I get another fever tonight I have to call the doc and get some more tests. Yuck. They already did an EKG (which was fine) yesterday. Just when I thought things were getting easy. I guess the moral is never let your guard down.
Good luck everyone! With a very special good luck to you LilyLady and Jules.
This is for you, With A Little Luck by Paul McCartney. Thinking of you guys...
0
