September 2013 Chemo Group
Comments
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alfranco,
My eyes drive me nuts right now too. Crusty over night, watery all day. The doc said that the tear ducts tend to get blocked during chemo and it will get better when I'm off chemo. Incessant twitching too. uggh!!
As for fainting spells, I've felt like fainting many times. Usually I'm dehydrated. Gotta keep downing that water and other liquids! Hope you feel better. -
Thanks kjsimpson sucks we are going thru the same things,but at least I don't feel alone.
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I have finished 3 of 4 treatments and I got my period only once.
The eye twitching is seriously annoying! And i feel that my eyesight has been affected as well.
Yeah I have had sharp pains in my left side too and i think that is my heart-who knows what else is happening in there?
Can't wait for this hell to be over... -
hi alfranco and kjsimpson, ive had the crusty eyes and terrible watery eyes, runny nose also, started after my round 2 of chemo, i was a cute sight in the morning! Most of that disappears except for the eye stuff. Whichi usually do warmwater compresses.
As far as almost fainting almost did that once in morning when everyone was gone pretty scary felt clamy, blurred vision. Had to sitdown and do breathing excercises. After feeling a little better called my onco, hesaid i was dehydrated. Really? Thought i was dying. Anyway ladies i was told to drink 3 litres of water, include dport drinks or broth, you not only need water, but the salt too. This prevents you from peeing out all your water, u need to retain that water try to eat salty too.
Chemo sides are the worst u never knowwhat to expect from one day to the next. Emotions are tough too first week after chemo round, crying, pyscho episodes etc. hang in there guys -
alfranco and Mercedes,
Thanks. Yup, it sucks going through it, but glad that we have a venue to commiserate and support one another. Helps me differentiate the 'normal' sucks from the abnormal sucks. ;-)
I had to take the whole week off after chemo this time. Tried to go into work on Thursday and lasted a little more than 3 hours before rushing home to keep the bathroom company for the rest of the day.On the upside, I'm feeling so much better today. Food stays down twice as long. I'm safe to be away from the bathroom for a couple of hours at a time now. (heavy sigh).
Marathon, marathon, marathon.... Gotta keep positive and perspective.... marathon, marathon, marathon...
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So, I'm about 8 weeks away from what will be a bi-lateral double mastectomy. Am meeting with the surgeons right before Thanksgiving. What should I ask? What should I know before I go? What should I be doing now to get ready for the surgery and recovery?
Also, this is a little personal (isn't it all, actually?), but I'm a bigger person and have never been into running because, frankly, I bounce a lot. But, with that impediment soon to be a non-excuse, I'm thinking that working up to become a runner might be both very good for getting back into shape and be a good vent for my psycho-social needs. I think I'm going to need a release valve so I don't become psycho. ;-) Suggestions? Warnings? Personal experiences?
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Kj-everyone is different. I didn't get full use of my arms until three months after surgery. I needed help showering and going to the bathroom. Can't pick up anything over five pounds. I even needed help getting to and from bed. I had no strength in my arms whatsoever. It hurt to reach. I felt like a T-rex.
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KJ: My knees were always aching from chemo. Ibuprofen would help stop it. Now that I've been out of chemo for about six weeks, that has stopped thankfully.
PeacockGirl: The only side effect that remains is this damned chemopause, which in my case is permenent as I'm 53. However I've got a continuous cold sweat which is crazy. Doesn't matter what the temperature is outside and nothing seems to help. I've had to dress in layers for the first time in my life and it makes me nuts. I got a towel on Amazon called a Frog Toggs Cold Towel that absorbs water and evaporates cooling you off so I'll go try that again in a minute. Argh.
Anyway, halfway thru rads now and doing well. So much easier than chemo. Next month, tamoxifen. Hopefully that will go okay.
Everyone, hang tough. There is a light at the end of the tunnel. -
mercedes60
I totally agree with you about being done with everything tasting bad. There are so many things I crave but don't bother to eat. I only had to do the rinse after my first treatment. It worked like a charm, not that I want to use it again. Lol.
Does anyone get really bad headaches from A/C or neulasta shot. I feel like every time I move, my brain is rattling around. Very painful. -
kjsimpson, love your idea of picking up running! Although I have taught fitness for almost 12 years, it surprised people that I could never run non-stop outside...it takes a patient amount of time and training but most anybody can learn! I finally decided I wanted to get into running in May of 2012, and I followed the couch to 5k program, free off the internet. You basically walk/run 3x a week for a 20 minute workout.. And the program is 8 weeks long. You can stretch it out easily by just repeating a week if it is progressing too quickly. The walking becomes less and the running more..before you know it you are running 30 mins non stop. The first workout is warmup with 5 min walk, then jog 30 secs and walk 60 secs 5x then cool down with a 5 min walk. It progresses from there each week. Get good running shoes, find a local store or a roadrunner store where they will video your stride on a treadmill and determine the right shoe for you. Take things slow, short strides and keep your feet low to the ground and under your body..it's not about speed you work on that later. Do it outside as much as possible, treadmills are great for a workout but wont help you learn to run and move forward outside very well. By december of 2012 I ran my first half marathon. My goal after chemo and radiation is to get healthy and train for my first full marathon in October of 2014. I will most likely have to revisit my friend, the 'couch to 5k' program in January myself as I have lost the ability to run on chemo with low hemoglobin and awful fatigue....I keep telling myself all in due time. Our health will return and we will be stronger than ever! Ps-there are also great books by Jeff Galloway on walk/run programming! -
I am very much looking forward to running once this is all done too. i was able to run through round 1, and about. week of round 2... that's it. Now it is just walking. i have always wanted to run a 20 k race here called the Dam to Dam. It's been on my bucket list for years. 2014 is the year I want to check it off. It runs along the river...from one dam to another, and draws thousands of runners.
About the eye twitching. It started about 3 days ago with me...right eye only. very annoying. -
KJ - I'm looking at surgery next, too. Mine will be the beginning of January, and I'm having a bilateral mx too. I started reading on the surgery threads and frankly it scared the crap out of me. While I've learned so much about chemo & how to deal with side effects on here, sometimes I think too much information isn't a good thing. Good for you for wanting to take up running. Peacockgirl gave you fabulous tips. I HATE running. I always have. Every step is like torture for me! I can walk ten miles (well, not now... I can barely walk ten steps without getting out of breath...LOL) but ask me to run a mile and I'll curl up in a ball and cry.
The crusty eyes in the morning and watery eyes all day are driving me NUTS! I feel like I have to pry my eyes open during the night if I wake up to see what time it is and in the morning? Ugh. I've always had very sensitive eyes anyway, but this is like sensitive eyes x 1000. I hate it. It makes it hard to wear flattering make up to cover the fact that I have like five eyelashes left when all my eyes do is water all day long.
Yesterday I had the start of another migraine and I was so afraid I was going to end up in the ER again. It was getting so bad and none of the meds I tried were touching it. Finally I found the right combination with ibuprofen 800 and a muscle relaxer. I hate taking so many medicines, but I needed relief!
Thanks for all of the posts about bloody noses. I had another one yesterday. Booo. I'll have to try the saline spray, and maybe run a humidifier, since I live in TX and it's very dry. -
KJ and lighthouse I had my double mastectomy before my chemo and I have found chemo much harder and mentally much more challenging. I found the surgery difficult in recovery and the first night but was all manageable after that. I got off my meds as fast as I could which helped and walked a lot. The best thing I did was find a physical therapist who specializes in cancer patients. I had an auxiliary node dissection so needed some extra help in returning to full range of motion. It didm't talk long with her help and I now am back to full yoga. although I still have pains in my breasts and a tight clamping feeling at the end of the day, but nothing too bad. I would have been in agony and had very limited movement if I had not found her to be honest.
I bought a great arm and back pillow for sleeping and sitting when I got home, I stayed in hospital for 2 days as I wasn't ready to leave after 1 day. I had my 4 drains in for about 10 days and just wore baggy dresses and went out without caring. I ate lots of protein, slept when I could as I was pretty drained for a bit. I had a nipple sparing, one step reconstruction as I didn't want to have any more surgeries. Buy some bras that clip up the front or velcro as you will probably have bandages for awhile in that area. Have clothes that you can pull up onto you or shirts that button as overhead is too hard at first. I bought a couple of pairs of really beautiful PJ's to wear so I felt good. Ask all the questions you can think of and take it easy for the first week or so as you will be a bit tired. I hope any of this helps and if you got through this journey so far of chemo as you have done so brilliantly you will be absolutely fine. Best K -
Special K I will go and see her if it persists until monday which it looks like it will. What did you do during this time? Take Benedryl? and for the swelling? K -
Wigs. I have mixed feelings about mine. I have had long hair for over 20 years and could not imagine having short hair and especially no hair at all. I shopped for my wig before I started losing my hair. It looked great when it came in and I tried it on. Very excited and thought ok I can do this. I wanted to still have the length and people i have worked with for 15 years had no idea it wasn't my hair. After purchasing it I find out that it will not last through all of this. The average life is 2-4 months. After paying $260. I think it should last til all my hair has come back. The longer it is the more tangles you have and the more damage you have. Within a couple of weeks it was in bad shape on the underside. I use my straightener on it's lowest setting to try and make it last a little longer before I have to start getting it trimmed. I only wear it to work and my kids schools. As soon as I get home it comes off. It is truly a pain more than anything. But at times I am glad to have it because I do not want the pity looks. -
srmill- I have a long wig. It does get snarly underneath. I was told to spray the leave in conditioner on it at night (the underside and ends) and brush and allow to dry. The wig boutique said they would also do a deep condition if it was getting ratty. You can also get the ends trimmed. My boutique didn't think I'd need to replace mine if cared for properly. I also sometimes put it in a low loose pony to lessen the friction/wear. -
wigs! Well i bought a beautiful one before i lost my hair, i normally have thick and wore my hair shoulder length. So i got use to going bald and wearing fancy scarves, but i have trouble wearing the wig, i did the other day when i went shopping with my sister, it kept itching me in the dept. store to the point and amazement of everyone i whipped it off with a sigh, cause us chemo girls do weird things right? So my sister got a laugh as i stood there wig in hand rubbing my bald head, however strange and bewildered looks from evrryone around, yes i did have a scarf handy lol. So thats my wig story, i guess ill try again.......
Today i feel like crap taste is so off its day 5 after chemo usually the worse, very tired, however it was my last AC onto to taxol dec 3.
Yesterday my 16 yr old daughter came up to me ipad in hand and said mom u need to change ur taylor swift shower songs that u dont know the words to. Lol to this one its called (Titanium) i listened to the powerful words and well got weepy. Yes this is my new go to song when it gets rough. Ladies this us our song......... -
kj-
I had breast implants before finding this cancer. LOVED them and lived with them for years...golfed, ran, did everything fine...had bilat. mastectomy with the cancer and they put in tissue expanders until they get the size you want. Adding saline every couple of weeks, the expanders feel like 5 pound rocks and are the most uncomfortable things I've ever experienced...they go way into your armpits too..super uncomfortable, and the recovery is long...I felt ok at 3 weeks, still tired but way better at 4....the first few weeks are painful to move , shower, sleep....but it gets better. Then the exchange surgery is simple, they remove the rocks and put in implants to size you wanted and sew you up...maybe hour long..I felt fine after with no pain or exhaustion...in fact started chemo 2 weeks after I had that done...
Look up this website: Jeremy is in my family and he did mine...this will give you ideas/questions to ask.... -
Peacockgirl,
Thanks! I'll check out the Couch to 5K program. Won't have excuses once surgery is complete. -
Lighthouse and Ek,
Great advice and info, thanks. Lighthouselady, it seems like we are on a very similar track and timeline. Just curious, why are you having chemo first? I thought that was only for IBC (which is what I have).
Ek, The doc, so far is saying I'll only be in the hospital overnight. I'm pretty shocked at having a double mastectomy and going home 24 hours later. I hope they give me some options to stay a little longer if needed. That, itself, kind of scares me.
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Audra,
The link didn't work for me. Can you try again? -
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yes, they are in Colorado...
and I went home day of my mastectomy....got a lot more sleep than waking up every 2 hours for checks in the night.. -
KJ - Originally my surgeon recommended chemo first because my tumor was 4-5 cm and close to the skin. She hoped the chemo would shrink my tumor enough to conserve my breast. Then we found out I am BRCA+ so no breast conservation for me anyway. But she still recommended chemo first for two reasons. I definitely had one lymph node involved (at least, that's all they biopsied), so they wanted to zap my body with chemo ASAP in hopes of getting to it everywhere, rather than delay with surgery and recovery and giving it more time to spread. Also, since my tumor isn't small and isn't in a great location, if they did surgery first she would have had to remove a lot and not leave the plastic surgeon much to work with. So even though I'm having bilateral mx, if my tumor size is reduced, the surgery should be easier for all involved, and hopefully give me better reconstruction options. -
They told me I will be in 3-4 days for my surgery. Maybe because I'll be having a hysterectomy, too? -
Probably, and good for you...I am wondering if I need ovaries removed as they are the cause of this over production of er pr+ that grew my cancer...and i'm reading that Tamoxifen can cause uterine cancer...??? as the Tamoxifen just suppresses estrogen to breasts not to uterus? confusing...I almost want it all taken out too...
Just too tired to do it now...been a HUGE last 2 months of surgeries and now the chemo... -
I am horrible about keeping up... I actually felt good enough that I got some housework done lately. I don't even want to talk about how long it had been since I had done some things that really are what I would have called "bare necessities" before. Oh well, at least I got them done now.
Headaches: For those having headaches after treatment, if you are getting a pre-chemo steroid and/or nausea medicine, ask them to run it really slow. I was having 4-5 day headaches for #1 and #2 but when I asked them to run them slowly I didn't have a headache at all after #3 and #4!
KJ: I am having the nausea a lot now too. I didn't have anything until #3 and that just lasted a couple days. This round it has been coming and going in waves. I never know when to expect it. So then I pig out like a crazy lady in between the sickness. My diet is absolutely horrible right now. It seems to be better now though. Hopefully it is just the first week or so. I think it is probably similar to the "ick" feeling that you AC ladies get.
Eye twitch: SO ANNOYING!!!!! Min started with the lower muscle in my left eye, then it started with the upper muscle too. Now my lower right muscle is starting up. I think I said something about my stomach muscles doing it too. That is weird.
Lisa: Cold sweats are part of chemopause too?! UGH. I thought it was just this illness I am battling --I called the doc and they called out and antibiotic, by the ways--I really don't want that sticking around. I didn't get hardly any sleep for three days because I was alternating hot flashes with cold sweats all night long lol.
Audra: LOL about being pissed about the period. I am hoping chemopause will extend to when I have my surgery so I won't have to deal with it then. I had gotten mine a couple days before doing round #2 and having had one since.
Peacock: Thanks for the info about getting back into shape! I definitely want to do something but I don't know about running. My knees have been in bad shape since I was a kid, really.
Thanks everyone for the info on mastectomies. I have an appointment on Tuesday with my surgeon. It is just the first of a couple because at this point I don't even know what kind of surgery I want as far as the mastectomy or reconstruction. I was debating on a DEIP flap but if I do that I have to go 4 hours away as there are no surgeons here that do it. I am really freaking out the more I read about it (just the same as you, LHL), but I think we need to know these things. It really devastated me to learn that there is no feeling afterwards... I almost considered just having a lumpectomy but I just feel like I should have a BMX for some reason. There is too much cancer in my family. Does anyone know how much difference there is in sensation with a DIEP flap? Is it even worth the extra pain and recovery time? I just don't know about having two completely numb projections on my chest. I would likely shut them in the car door all the time or something. -
Audra - I am BRCA 2+, which gives me an increased chance of ovarian cancer (as opposed to BRCA 1 which is mostly breast cancer), so I would have been having my ovaries out anyway. Then the gyn oncologist told me the same thing about Tamoxifen (which I'll be on for 10 years)... if I'm on that, she'd want to take out my uterus, too, since it can cause problems with that. So I'll have it all removed, and good riddance, I say! -
Oh and I had a really good kid funny. I went to my babysitter's house to get my kids after class and her daughter came up to me and asked if I was still bald. I told her yes and took off my hat so she could see. I had just shaved my head with a razor to get rid of all my old dead hairs that were just sitting there in the follicle so it was completely smooth. I had all the kids rubbing my head
My friend's daughter was super confused and asked me where my crack was. Apparently, she thought that the part in your hair was an actual crack in your head lol.
ALSO!!!! OMG, so crazy. My friend (who just found me on Facebook after not seeing one another for 18 years and has since become a huge support for me) drove two hours down to see me on Friday. She said that she was visiting her boyfriend's family here so she wanted to stop by to see me too. So we were sitting here talking and all of a sudden I saw flashing lights outside. She said "they are here for you." I was thinking "okay, am I getting committed or what?!" lol. So I went outside and it was the big pink firetruck. I don't know if you have ever seen them anywhere, but the support women going through cancer. I walk out there and there are all these firefighters and other people. They gave me a bouquet of roses and each one of them gave me a hug and told me that they loved me, and then they had me sign the fire truck. People who are survivors are allowed to sign or you can sign the names of people who have lost the battle. The whole thing was so overwhelming. You guys kind of know my story. I don't have much support and even from my own family. I am tearing up now just thinking about it. What a great friend I have and what wonderful people to do something like that.
Here is the link to our local chapter, talking about what they are about. -
Picture of me signing the fire truck!!
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