March 2011 chemo-lounge
Comments
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kitchenella-I did not have ac, but had 12 week of taxol with herceptin. I did not have too many side affects. I was tired on day 3 and four usually.Kept my fingers and toes in forzen peas...still do even though I am onlly herceptin now.
My skin is crazy dry too. And my hands look old. I am going to get a retinol cream to see if it will hel with some new age spots that have developed. For dryness, I have used various things...at night I slather it on and then put cotton gloves over them. I've used coconut oil, pure itamin e (very sticky), aquaphor, or a body shop cocoa butter (it has all kinds of stuff that probably is bad). I have slathered the first three on my foobs also.
ow....on to HAIR....I am soooo jealous of you all with curls. I was hoping for curls but mine is coming in straight. A little wave around the back. It came in really gray and brown. Not attractive at all. I have had it colored twice, with the same old stuff my hairdresser has always used. At least the blond looks good. Mine is about three inces long at the longest parts. On top, it is a couple of inches, but thinner. It is just now looking like my scalp is covered. I don't have enough bangs yet, so unless I am working out, wearing a baseball cap, I will be wearing my wig until I have something close to a hairstyle that I think is marginally flattering. Plus, when I have a hot flash, I think the wig stays decent. My real hair will melt and flatten to my head!0 -
ks...I have not hurt so bad that i was in tears, but I do feel like an 80 yr old lady! I am not on Tamox or similiar since I am triple negative, but I do get achy, especially at night. Most nights i go to bed with a heating pad but then ditch it after about 20 minutes. I am so stiff!
I don't notice it during the day so much, but by evening I have trouble getting off the couch, out of a chair, etc. If I am on the floor it takes me forever to get up. Do any of you get CURE magazine? It was free in the doctor's office; i think it comes out every 2-3 months. It talks about the achiness post-chemo/rads. Of course now I can't recall what else it said (I'll go look later!) but I remember showing it to my husband, saying, "See! It's not just me!" which is something I do with just about every ache, pain, etc. I am doing more stretching because of LE exercises and need to get walking again. Kinda quit that when the snow started and it got cold but it has been decent weather lately and little Gracie Lu likes to go for walks.
Fortunately, I have not had much trouble with dry skin, unless I stay too long in the shower. I did during chemo, but not too bad. I remember a gal from the Look Good Feel Better class swore by olive oil...she would have a small bowl by her side watching TV and she said she just constantly took a little dab and rubbed her hands. Now that just sounds too oily too me and I usually have a book in my hands so I never tried it myself.
I am having a shoulder eval this Thursday. Don't know if it is rads related, lumpectomy related or frozen shoulder, but my OT has suggested I get it checked. That is not her area of expertise-just what I need, more therapy. But I can tell it is tight and I do not have full range of motion. In reading other threads and articles, it seems like shoulder problems are not uncommon after treatment. But soon I should not be needing twice weekly LE therapy so I guess I will have "time" to work on a different part of my body. Am hoping I can do it at my local hospital instead of driving a half hour for the PT, but I do like this place. Shoot, I drove 95 miles every day for 7 weeks for rads, this is nothin'!!
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Husker....with the hot flashes I have, I am my own heating pad!
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Ha, that's funny! Instead of hot flashes I get cold flashes...weird huh?!
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I have had tremendous pain in my arms and shoulders. Like you ks, sometimes it brings me to tears. However, I'm pretty sure mine is caused by Tamoxifen, which I have been taking for 2 1/2 months. Shortly after I started taking it, I would wake up feeling pretty good, take my pill, and about 2 hours later, the pain would begin. It has gotten progressively worse and is now unbearable, keeps me awake at night, etc. My MO has told me to quit taking it, which I'm glad to do but feel I need something to cut the risk of recurrence.
I know you aren't taking Tamoxifen, so our causes are probably different. I take Aleve, but itdoesn't help much.
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Good morning ladies, well I cant beleive this day has come it is my one year cancerversary...wow...what a long way we have all come. I remember being so scared and feeling so alone and all of you were right there with me every step of the way...from the bottom of my heart thank you. I will reflect today only on the positives that have come from this year not the negatives not the things that changed that I didnt think I was ready for. I am standing, I am cancer free and I move forward every day.
Hugs Kymn
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Yeah for you Kymn! I hope this year brings many good things. I found the one-year cancerversary to be not a big deal, I didn't get too down about it. I did find the start of 2012 to be incredibly encouraging and uplifting.
ks and Jules: I am so sorry you are in so much pain! I hope the doc can help. I guess I have had some minor tightening due to the tamox. Nothing serious, but I do notice when I stand up (especially in the evening) I walk like an old lady. My mom has arthritis in her feet, and I feel like I walk like she does!
Jules: I am happy to hear about good results!
fluffqueen: I don't even know what to do with these curls! Several people have called me "Curly", thinking it was funny. I haven't hit anyone...yet. Mine has come in kind or a blah color as well, but I'm pretty low maintenance so I haven't colored it or even had it cut (beyond shaving my neck).
husker: the LE therapist recommended PT for me. I don't know if I will do it because I really feel very close to normal. I was having some trouble after exchange surgery, but it all seems better now. We'll see.
I have a mammo (and probably ultrasound) on Thursday, and I am feeling very nervous. I had a left MX, but before the surgery, they were looking VERY closely at something on the right. I am so nervous that I am going to freak out if they want to do a biopsy or something. This is when I am mad at BC for taking away my blissful ignorance...
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Maxine praying that all goes well with your test. It sux at what cancer has done to us.
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Have not posted in awhile due to college-age niece introducing a lovely virus to my computer by downloading songs from a Russian web-site. I am using her b-day money to fix it because she has been told before not to mess with it!!
First of all thanks to you other hair-challenged gals for posting about your slow hair growth. I think only the over-achievers are posting on the hair thread. I keep remembering when Kymn did her faux-hawk and it looked so cute but I still have too many pink areas showing. I am grateful to have hair at all so shutting up about it---for now!!
Rads burns under my arm are nicely scabbed but it makes raising my arm a little difficult-everything is really tight. The chest skin has already peeled off multiple times and is nice and pink.
Rads doc is also a naturpath and has me doing some supplements. He ran a test where i peed in a cup and it got sent to Atlanta and it took 6 weeks to get results. It was to compare the amount of good estrogen to bad. He said I had the worst reults of anyone he ever tested. To correct it I am to eat 2-3 cups daily of one of the following foods-brussel sprouts, broccoli, cauliflower, cabbage or kale. I am also to take a supplement called DIM-which has the concentrated version of what are in the veggies. I looked DIM up on the net and there is tons of info on it. Still reading because some of it is confusing. I am also to lose 15lbs by the time I see him in April. He said that was 1 1/4lbs per week and anyone should be able to do that. What I really like what he said was "Go ahead and eat some bad food if you have to but you MUST eat good food every day." I thought that was a good philosophy. He says that as an individual the biggest thing I can do to control my disease is control my diet. When I was first DXed I lived by the Anti-Cancer diet but have been steadily backsliding ever since. I just felt like he gave me a huge responsibility if I am to stay stable I have to do my part.
The other things he has me on are a good fish oil, Co-Q-10 (ubiquitous formula/easier absorbtion for people over 50), massive amount of Vit D and my multi-vitamin. I have just started all these this week-except for the DIM.
Just curious what you guys are doing if anything. I have read up on some of the supplement threads and it is overwhelming what some people are taking.
Those 5 veggies are very challenging to get 2-3 ups down a day-I am having to do it over at least 2 meals. Brussell Sprouts are awsome when fixed with bacon and shallots-but I am sure that's not what he had in mind. Going to have to try juicing because I am just not getting it done in whole food.
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Kymn, Congrats on your cancerversary (sp:?)... what a long, strange trip it's been! Here's to you and a better year in 2012!
Maxine, Wishing you a good outcome for the mammo and ultrasound. It is scary every time. Every single time. But one thing I've noticed here and other threads is that there are so many OTHER possibilities too...lets shoot for the possibility of nothing, nothing at all. One thing with the PT for the LE (we are so good at throwing all the alphabet soup letters around-lol!) is that you could get an eval (or maybe you did already) with suggestions for stretching on your own. I am scheduled for 8 weeks, but honestly I could be doing it on my own. I find I am more committed though with the appointments. Plus she is doing stretching of underarm area to break up scar tissue that I couldn't do myself. But if you don't feel you need it now, it can wait. Just be aware of what it might look like if it decides to make an appearance god forbid.
Lily, my MO has not been one for supplements. I do take a multi-vitamin with his approval, a pro-biotic (also approved) and a large amount of Vitamin D, per PCP. I was taking 5000 units and now am taking 10,000 every other day. My husband accidentally bought that at Sam's and I just decided on my own to spread it over two days. It seemed like a lot. Will find out with next blood work. I was low (17) when I was first tested at my insistance, due to convos on this website. I would have a terrible time getting all the veggies in unless it was in V8 juice or something! But it is something we can control. I just don't want to be popping 20 pills a day and some people are just crazy about it-not for me. How much D do you take?
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Hi everyone! Good to hear you are doing well Kymn! Here's to a better 2012!
Kristy, my vitamin d was 11 hen first tested in the dead of winter, was 17 in late October. I took 50000 vitamin d for six weeks, 2 per week. My onc told me to take 1000 when I was done that. It doesn't seem enough given how low I was. I am going to ask her to retest hen I go on Thursday for herceptin. My cardiologist told me under 25 is not just low, it is deficient and it is bad for your heart as well as the cancer and other risks. I also take 4 fish oil pills at the cardiologist's suggestion and a multi vitamin. That's it for supplements, trying to drink a cup or two of green tea as well and walk daily.
Lily, I am so with you on the hair. Mine is very short and very thin. I want more!
Maxine, good luck on your mammo! I am sure all will be fine.0 -
I fogot to say I am supposed to drink 3-4 cups of green tea daily also. My Vit D was 13 so I am taking 10,000 daily 5 days a week. We will retest in April.
I am also taking a Celebrex knock-off for my knees that makes me feel really good-only problem is the onc isn't liking it. It can cause liver damage and since I lost a large part of my liver and it is growing back now he says why risk it? I told him not everybody gets every SE and I have to balance being able to work and enjoy myself with the liver risk. I am taking half the reccommended dose-it isn;t as great as it could be but maybe lessens the risk by half. We test my liver every 3 months anyway so if it is causing a problem we would know it fairly soon.
Before BC I didnlt even have aspirin in the house-now if someone suggests better living thru chemicals-SIGN ME UP!!
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Hey ladies...On the vitamin D note - before my dx my vitamin D was low so my natropath put me on vitamin D. I took it but not faithfully. When I started chemo it wa 27 so my med onc put me on the 50,000 IUs weekly for 4 weeks. After I finished chemo it was 25. I saw my natropath again and he put me on a sublingual dose of 8,000 IU's daily. I started that in July. I had my levels checked again the first week of October at it was 88! This worked much better than the pill form for me. I am now on 4,000 IU's and I will have it checked in April again. I also know that some may think the sun had something to do with my increased levels, but I was having all those skin rashes from chemo so I had stayed out of the sun completely until our vacation in mid August. I am sure that contributed a little, but I avoided the sun most of the summer because of my skin issues.
Here is the kind of Vitamin D my doc had me take:
One bottle lasts forever!
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I have been having bad muscle pain and weeknes. Went to my primary dr and he said one possibility is that I am taking vitd3 and not taking any calcium. He said my bones could be pulling all the nutrients from my muscles.???? Anyways I had to go back today to do bloodwork, he is also checking a few other things. Hoping we figure out what is going on. I haven't been to work all week cause of the pain.
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Wow ksmatthews, that is something. I had no idea vitamin could do that. I hope that is what it is and you feel better soon. Let us know how you're doing. Now that I think of it, my joints and bones haven't been feeling as badly as they were, maybe it was when I was taking that 50000 IU of vitamin D.
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ks, I think you are onto something. Tamoxifen is supposed to increase bone density. Also I have increased my vitamin D to 2000 mg per day. Just a couple of days ago, I wondered if my muscle/bone pain was because I wasn't getting enough vit.D to keep up, so I started supplementing. Sure hope it helps.
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ks, be sure to let us know the results of your bloodwork. I hope your doc gets it all figured out.
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Bloodwork should be back today. I haven't took the vit d for the past 2 days. And today I feel 75% better. Able to get up and walk. He also said my magnesium could be low. So I will definatly let you all know what the bloodwork shows.
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Hi there March '11 chemo pals!
I fell off the planet back during chemo. I had some complications and life just got to be too much for me. I finished up without too much trouble, though, and went on to daily rads for most of the summer, probably like most of you guys.
Then I took a coupld of months to enjoy not having treatments or scans, to be with my little girls and help them start a new school year. I also returned to work, which has een mostly great because it offers a distraction on days when my mind wants to worry about medical stuff.
I never stopped thinking about all of you, just couldn't post for a while. I know so much time has passed and, from what I've seen in a quick scan of recent posts, it seems we're all hanging in there. I hope 2012 will be a much, much better year for all of us!
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Maxine-I hope your mammo is done and results look good!
KSMatthews-Hoping you get some relief from your pain soon.
Michelle-Welcome back! Glad to hear you are doing well. 2012 will be better!
Lilylady-As always, you were to the point and that's what I needed to hear about diet and food. I have been struggling but have made some really good changes in my diet. Very small steps, but day at a time. I struggle to get all of the healthy stuff in but I l know I have to. Interestingly, my Onc is not into any supplements. I don't take any. I wonder if I should.
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Thank you all for the nice comments. I really need you all to say alot of prayers for my friend Janet. They just found out Wed. that she has lung and liver cancer and they have only gave her days. I went to visit her today and she was unresponsive
this breaks my heart that Cancer is going to win another battle..0 -
ksmatthews: oh, wow. what awful news. I will send prayers for Janet. It is just too much sometimes.
Michelle- good to hear things are going well, and welcome back.
colodisney: I started a few supplements, but I really don't know what I'm doing, so I am hesitant to take too much or too high of doses. I guess I should talk to my onc about what might help, but I think she isn't too into supplements. I take some vitamin D and some fish oil and once in a while I remember to drink green tea (hard to find a kind that doesn't taste like cardboard). I also started this week taking a baby aspirin most days.
My mammogram today was all clear! The area they were looking at a year ago (in the non-BC breast) is gone. The radiologist said that with chemo, tamoxifen, and zoladex, a lot of things disappear-because there isn't any estrogen feeding anything, I guess! What a great feeling to have a clean scan. Thank you for all of your prayers.
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maxine yeah for the clear scan!!!!
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Hurray for the good scan Maxine! What great news. My onc told me that the chemo last year might have killed any skin cancer that might have developed in the future. Everyone in my family has skin cancer. Dang Irish heritage!
Welcome back Michelle! Glad to hear you're doing well. I was wondering what happened with you. Weren't you also going to Penn?
Colodisney lover, my onc is not into supplements either. Although she is the one who checked my vitamin D and told me to take 1000 iu after I finished the 50000 IU megadose she gave me. The cardiologist told me to take 4 fish oil pills a day. The onc knows about it and didn't object. She didn't want me to take it when I was on chemo though. The only other thing I take is a multi vitamin which I've been taking since surgery. The PS told me to take that. I think the 4 fish oil pills is high, but I have the heart problem from herceptin. You're probably good to take the vitamin D, 1 fish oil and a multi vitamin. Be careful on the vitamin D though, I mentioned it to my NP and she did say too much can cause bad bone and/or muscle pain. I think 1000 iu is a pretty safe dose for anyone. Got my level rechecked today, will hear later what it was. It has to be better than 17.
Ksmatthews, that is heart breaking. I have never heard of someone die so quickly from cancer. i will say a prayer for her and you.
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Interested in all the Vitamin D talk...my latest level was 34 (up from low 20's) after taking 60 to 70,000 units a week for several months.
mdg: what is the brand of sublingual Vitamin D you are using? I have been trying a liquid form...sounds like your results are dramatic
Back to Mayo at the end of the month...taking my younger daughter along and have appts. with ONC to talk about vaccine trials, Medical Genetics and a surgeon to see if he will take out my ovaries !!!
My energy has improved greatly and it looks like I will HAVE to go without my wig soon...lots of curly fuzz up there but not too attractive.
Glad to hear you are all doing well..
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Can't tell you all how much I enjoy hearing from each one of you -- whether it makes me laugh or tear up, it's all important to me - so thanks!
ks, so sorry about your friend Janet. I will keep her in my prayers. I'm glad you were able to visit her but it must have been so hard with her unresponsive. You're a very good friend.
Re: feeling decrepit, that's definitely the situation for me. I'm on Tami but was this way even before. (I remember having lunch with Kay and she was saying how the Herceptin was crippling her. When we were getting up to leave, she said "oh you have the same problem and you're not on Herceptin!") I have recommitted to daily exercise and am getting back in the groove of taking my supplements (fell off that wagon during the holidays). My family doc said earlier this week that he's betting that I'll continue to feel better and be able to move more easily in the months to come. From his mouth to God's ear....
Fuzzy curls here too and VERY thin on top. Going to stylist Saturday and may get some color (definitely lighter than my normal brown hair though).
Maxine - SO GREAT about your "all clear".
Tomorrow (Friday) is 1 year since I found my lump. What a crazy, mindblowing year it's been. You will never know the many, many ways you've all helped me. THANKS!!
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Silia, I remember that! I am doing better with that now. Not sure why, it may be that I just had herceptin yesterday and I feel the worse a few days after that, or maybe the vitamin D I'm taking is helping. I'm on tamoxifen now as well, so that could only be making it worse. I hope it's the vitamin D and the improvement lasts. Ksmatthews, really curious about your pains. My doc did say too much can cause joint and bone pains. I hope I found the right dose for me.
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Oh, and Silia, still looking forward to a second get together some time!
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kay my pains are muscle pains, not bone pains... all bloodwork was clear, so gotta see what next step is.
Thanks for all the kind words, but sadly my friend passed this morning.
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KS - I am so terribly sorry for the loss of your friend. I am sending hugs and prayers. It is just so unfair. Cancer sucks!
Here is the vitamin D I use: http://www.amazon.com/Bio-D-Mulsion-Forte-1oz-Biotics-1012/dp/B000UQOCCQ/ref=sr_1_11?ie=UTF8&qid=1326495865&sr=8-11
I am not having any of the muscle aches some of you are having. I have been stretching a lot though after my workouts. I was dealing with IT Band Syndrome in my left hip (from a muscle imbalance) and a heel spur in my left heel. I can tell you with stretching, weight training and some light yoga it has all almost cleared up. When I saw the dr. 2 years ago for my heel he said "surgery". So I guess my point is, don't underestimate what exercise and stretching can do for the body. I feel better now (body wise) than I did 5 years ago. I need to get back into weight training but I am still finishing healing from my surgery last month and have had some healing issues so I am waiting a few more weeks.
Kymn: Glad to see you posted and are ready for a good year!
Silia: How much difference one year makes, hu?
As far as the hair thing...just realize the new hair growing in will change in time. Mine is pretty much normal in the areas where I lost hair...it is no longer that grayish, frizzy hair. I am using Moraccan Argon Oil on it before I style and doing a deep conditioning every other week. I use all organic, chemical free hair products and use Naturtint for color.
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