Chemo May 2011
Comments
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Ok, I'm scared now. I get my port tomorrow in the morning directly followed by my first round of AC. I am scared to be put out for the port. Any of you doing AC? What am I going to feel like? Will I be able to go wig shopping on wednesday or thursday? Why am I freaking out? I feel so unprepared.
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Bioadoptmom:
My GP prescribed xanax for me when I was first dx'd. I did not like the way I felt on it as it kept me very groggy in the morning, so the next drug she prescribed was klonopin. I currently take it when I feel anxious. It takes the edge off. I only take as needed and it really does help with anxiety. So dont be afraid of it. IT has helped me get through some very trying times - well I guess I can say the entire 8 weeks have been trying. I feel like I've gone from living to a part of me died the day of dx.
((((Hugs)))) to everyone here currently going through treatment. I have to wait a little longer as I had surgery on April 21. I think in approx 2-3 weeks I'll be ready to go. Most of you will be onto round 2 and I will be the newbie! Yes the waiting is the hardest part!
I visited a therapist yesterday and she mentioned come self hypnosis/meditation cds by Belleruth Naperstek specifically for going thru chemo. I think they warrant looking into. Like a guided imagery session, imagine the treatment wiping out and eradicating all the bad cells to make way for the new healthy cells. I havent ordered a cd, but think I will. We need all the postive thoughts we can get!!!
I know someone here stated they are taking weed killer aka chemo. I thought this was a great analogy. Yes we are taking weed killer so the flowers can once again bloom.
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You are freaking out because it is normal to do so.....this is a scary thing, having chemicals that actually kill cancer cells shot into your body. I have had a port for 12 years and love it. I did not get it when I was lst diagnosed Stage lV because I was being treated hormonally, but I did get an infusion of aredia every month for my bones (that was pre Zometa) and also after awhile they started having trouble with my veins from drawing blood and stuff, plus after my mastectomy they only had the one arm to use......so I gave in and got the port. I think the reason I hated the idea of it so much was because it was physical evidence that I had cancer....not that the big slash across my breast and not having a nipple wasn't a tip off, but for some reason I just did not want that port. I remember when my boyfriend saw it for the lst time he said It looks like a doorbell. And that made me laugh because it did. Mine sticks out a lot more than most for some reason and it is a definite round projection.....but let me tell you , it works every time and I don't even need the cold spray anymore, because it is probably calloused.
What else did I want to comment on...can't go back a page or I will lose my post and I hate that. Oh, the wigs.....as I said earlier check the yellow pages. Many times in the onco's office they will have flyers or ads for wig and prosthesis places, but don't go to them if you can help it, as they are expensive. Also google wigs and a ton of places will come up. I did not get one through the Am Cancer society, but did get one through a local cancer organization and also bought one....I take that back, bought two. Buying wigs can be sort of addictive and it's a fun way to get a whole new look. I did not want to lose my hair, but I had treatments for so long that did not cause me to lose my hair, that by the time I actually did, it was not such a big deal, My original diagnosis was in 1990 and I did not lose my hair until 2009 so it was like I had 19 years to get used to the idea. I do recall or at least the friend who went with me when I found out I first had BC likes to remind me, the lst words out of my mouth were Will I lose my hair? My tumor was very small, the 19 lymph nodes I had removed were all negative and I had a modified radical mastectomy at the advice of my surgeon who said that way we would be sure to get it all.....so chemo was not recommended. However, the onco I am with now said that had it been as few as five yrs later, they would have given me chemo and if that had happened who knows, maybe it never would have come back. But that is something I will never know. However as un-fun as it is to do, I think all of you who are starting out with it stand a much better chance of never having to deal with recurrent BC and will remain cancer free.
Taste....interesting that you crave salty things....salt was the lst sense of taste that I lost....things would be plenty salty, but I could not taste the salt at all. Then all the flavor in things just gradually diminished.....I could eat really spicy things, but they didn't even taste hot. I ended up having chocolate malts or a Frosty every day....sometimes several a day. Sweet was the last taste I lost, but I still liked the milkshakes and malts because they just felt good going down. Chemo gave me heartburn....I took protonics and have now graduated to nexium....before that I had a cast iron stomach and nothing bothered me. Let's see, what else....I forget. Oh I think your onco is wise in giving you the AC slowly since you did have it before and it is true it can cause heart problems....not a guarantee that it will, but it is always possible. Oh and someone was talking about the SE disclosure that came with the klonipen (sp)...if you read most of those inserts you would be afraid to take an aspirin....they are just trying to cover themselves. I did not ever have restless leg,,,,but my friend did. I am going to ask her what she takes for it. Your dentist can prescribe that Miracle mouthwash for mouth sores and thrush...they mix it up at the pharmacy for you. Just try to keep your mouth and tongue as clean as possible.
I think that is about all I can remember. This whole deal is an adventure....we can be told about SEs and read about them, but we all react differently....one may lose their hair right on schedule, another it might take longer, and believe it or not some don't lose it....one may have nausea as soon as they get home while another one may not be phased by it at all. They had me fill the Rx for zoffran,but so far I feel fine and have not needed it at all. My eyes got totally messed up and teared all the time because my tear ducts got blocked, but this does not happen to everyone. We all react differently and we will never know how it is going to effect us until we actually get the treatment. I was always so scared of chemo and said I would NEVER do it....well, I certainly ate my words on that one. This halaven is the 5th chemo I have done and getting the lst treatment yesterday was just as scary as the very first time I had chemo. And that is why I am here going through it with you ladies, As they say misery loves company, but I am really praying it is not miserable for any of us. If I forgot to comment on anything I should of, I apologize....I have chemo brain big time...that is not a myth, it is true you do get that.Edited to add ...I just read your post which was made while I was writing away....I did not go for that visualization imagry at all....they told me to think of the treatment as a little pacman eating up the cancer cells....it backfired and I just kept seeing the little pacman character eating holes in my bones (because I do have bone mets) . Maybe it will help you, but it scared me. I do like the growing flowers analogy though.
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bkj66, Just wanted to wish you luck tomorrow. I will be getting mine in the morning as well, trying not to think about getting knocked out again, this time it's "twilight" vs. deeper which is what they did for my lumpectomy. It's all going to be fine and it will be over in a few minutes.
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Oh, how all of you make me feel not so alone! Thank you!
mccrimmon32-so do we choose or does the doc choose if we get twilight or deeper? I forgot to ask when I was doing the pre admittance.
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They choose for me. I have to be honest today marks the one month anniversary of my very first mammogram, I'm not sure if its supposed to work like this or not but all of my doctors have been recommended to me from my other doctors, they all know each other and my appts, surgeries, tests have all been pretty much set up for me and it's been so fast I don't have time to dwell on anything before they've taken care of me. They are all aware of my anxiety and have been wonderfull getting me thru it. Good luck tomorrow, it will be quick and done with before you know it. I'm looking forward to the Twilight, I soooooooo completely freaked out when they took me in to surgery for the Lumpectomy, but funny enough I only remember taking 2 breaths then the next thing I knew I was being woken up and sent home. They've assured me its only going to take about 10 min to actually get the port in then they'll start to wake me up. For whatever reason I need to know the time frame of everything going on.
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bk66: discuss with your Dr your anxiety. As a RN, I can assure you with a good twlight sedation you won't remember a thing and you will be relaxed. Going deeper - general anesthesia, requires a longer recovery time and increases the amount of drugs in your system.
I do think a port is the wise way to go. As I didn't have a port, by the 4th round of chemo the nurse had to poke me 5 times to get an IV access. Months later, I required another surgery and the dr had a rough time finding a good vein.
In March, over a year later, I had my DM with reconstruction, and they couldn't find a vein so had to have a PIC line inserted.
I worry if I ever need emergency access to a vein for IV medication it won't be possible.
You are doing the right thing. One time, no pain, no anxiety, and less chance of infection.
And yes, the day after you get the port in you should feel like doing anything you would of done before the port! Go for it!
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Thank you, Marybe. U are awesome!
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Just got off the phone with the Onc. Looks like my chemo start date is May 12! Im scared!
Not doing a port either per Onc recommendations. I have good veins and I hope they stay that way. Still scared though!
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Bkj66, all the strength and courage I can send your way. You can do it sweetie. I find out my start date on Monday. ((hugs))
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DebRox--- it's probably not going to be bad like u think so. I think that it is much less intense than I thought. It's the emotional stuff for me.
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You nailed that Cyborg, it is the emotional stuff. Like we have all been on a rollercoaster these last few weeks, yes I dare say weeks. Our lives have changed signficantly in such a short time and look what we are dealing with!
Fear is false expectation appearing real...... and you just affirmed that! Fear is our enemy!! Thanks Cyborg. Keep up the posting and keep smiling!!! Debby
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Me, too, cyborg. My hair was 40 yrs of long, all turned gray (a map of where I've been).I had my daughter cut it short right before first chemo so I could get used to a naked neck. Hair started falling out dozens at a time on day 21 after that first chemo, and I had my daughter shave it to 1/2". I think it gives me some sense of control over a process that has so many variables I can't control.
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DebRox,
I also had my surgery on April 21. I see the oncologist on May 9 and see the surgern for the second time on May 13.
We will be real close in start time for all this. But I think we will be on different meds as I am triple neg.
Candice
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@Marybe, Thank you for your info..I had a hard time with the chemo thing and alot of anxiety. Reading other people's past experience has helped me.
@bkj66, I just had my port install Tuesday. My surgery was 2 hours late due to some complications with my surgeons prior appt. But I was nervous the whole time waiting. I must say the port wasn't as bad. I opted to be put under. But compared to the healing time of my bilateral mastectomy this was very easy. It was a 15 min surgery and it took me an hour to wake up. Than I went home. The area around the port is kinda tight but that could be due to the fact of all the other surgeries and tissue spacers, which I had 50cc's added to today. I was nervous about that too but because I only added 50 cc's instead of my Reco Dr's 100cc he wanted, I dont have too much tightness at all.
I don't know about you ladies but ever since I've been researching online about BC, I've got info overload about foods,chemicals,how the chemo will effect my organs,etc. I got so stressed about what to eat or not to eat, I started eating less and not enjoying food when I should be boosting my nutrient levels before I start chemo. But I was afraid everything was gonna taint my body and trigger my receptors. I starting losing major weight after researching alkaline diets and i cut red meat(i was a heavy carnivore), my skin color started turning green. I met with a CCN, certified clinical nutritionist, today. She will help me before during and after my chemo. If anyone else is stressed with this I can say this has helped me. I changed to organic recently and I also did a house makeover, I took everything with chemicals soaps, detergent, cleaning products, etc., and gave them away, than I went and bought new stuff without all the toxic ingredients. I have been a hairdresser for over 15 years and now I'm going to research organic and non-toxic lines of haircolor and products.
~if you don't stand for something, you'll fall for anything
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Hello girls! Day 4 post chemo #1 and have been fairly tired and napping today with no steroids on board. Nausea is diminishing but must say that the taste buds and strange sense of smell is the most annoying thing do far! Mashed potatoes, chicken and sweet tea are what I crave - fruit juice which I keep up to keep things moving below all tastes as though made from plastic! Blah! I made a chicken soup that tasted only of celery and garlic to me but was apparently quite tasty to non chemo-poisoned! I might have to stick to tried n true recipes to feed the family! I love raw healthy salads and especially since dx have developed a real aversion to processed foods preferring to make fresh casseroles and soups- wintertime here in oz! What have you girls found to help the nausea and funny taste after chemo? Suggestions welcomed!!! Robyn
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I had my port put in yesterday. It really was not a problem. I was in OR for 1 hour and out in 2 1/2 hours. I have my first treatment this morning with Taxotere and Cytoxan. Not looking forward to it but I will make it. All of this messages let me know I am not alone in this. something that has made it easier for me is asking for loved ones to send headcovering,scarves, hats, what ever. It has made them all feel a part of this. I have 3 granddaughters and 2 grandsons. I wanted the girls to pick out something for Nana to wear. They were so excited to be a part of this. I only have to take 4 treatments and in 9 weeks I will be finished. We all will get through this.
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Had round 3 of Taxol yesterday - only 9 more weeks to go! Let's see if I can catch up ...
Bioadoptmom-I have restless leg syndrome already, but it didn't really get any worse (maybe b/c of the meds I am already on for it) - EXCEPT for while I'm in the chemo chair and they give me Benedryl. Everyone else seems to nap right through Benedryl but it makes me soooo restless! Did you have Benedryl?
rsummer - I know exactly what you are talking about with taste buds. For me the taste buds were totally shot with A/C. I used to love mashed potatoes and on A/C I couldn't even stand the smell! And, I'm a reformed chocoholic - used to eat chocolate every day, but haven't had a single piece since starting chemo b/c it just seems gross. I found that sweet tarts and jolly ranchers help with the 'wierd' taste, but you have to be careful b/c too many will give you mouth sores. I made that mistake after 2nd A/C. So far with Taxol, the bad taste has been gone. I even made mashed potatoes for dinner this week. Everyone at home was so happy and said they missed them. Ha ha. Also, I found that water tasted kind of funny too. So, instead of water, I drank a lot of lemonade and kool-aid. Good luck finding things you can eat - I've lost 20 pounds (that I really didn't need to lose) b/c food tastes so blah! (Oh, and I read somewhere that pickles help with the 'wierd' taste - I haven't tried them.
Cybord/DebRox- I hear ya on the emotional side. I was talking to my mom (my chemo buddy) and my favorite nurse yesterday while in the chemo chair. I don't know if I'm depressed or anxious or what - I'm just an emotional mess! I see the doc next week so I'm going to see about something to take to even me out a little more.
RE: Ports - I had my port put in before I started any chemo (I just finished 7 or 16 treatments) b/c I bruised to badly from the IVs for surgery. I guess my veins are so small that they always go right through them. BEST THING I EVER did! Makes all the blood draws and infusions much easier to tolerate. For me, surgery was a quick twilight event on an afternoon and I was back at work the next day - only a little sore at the site.
GOOD LUCK to everyone starting chemo in the next few days and early next week. We are all in this together and whether we feel it today or not we have all the strength inside of us to deal with whatever this crummy cancer can throw at us. Hugs to all!
Vicky
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Hi Girls. Hope everyone is feeling well today! ((((Hugs)))) to you all!
Im going for a haircut this weekend. Shortening the length up. I have decided to try Penguin Cold Caps so I am getting my hair colored as well, close to my natural color, I currently highlight. A little nervous about doing the caps, but feel it is the right decision for me.
I am also going to try to work out while undergoing chemo. Anyone with me? I'm thinking of keeping up with cardio if I can. Another member mdg exercised throughout her treatments, and I firmly believe it helped her through both physically and emotionally.
@cotrinh76: I have done the same as you. I evalulate everything I eat and have been switching to organic, cutting out meats and poultry, but I need protein in some form to counteract pre-diabetes so I do eat a little meat still at is does regulate my glucose better than plant based proteins. I fear that hormone laden animal products brought on the cancer, I mean look at the size of chicken breasts, they are not natural. I have lost close to 15 pounds since being dx'd. I really cant lose too much more weight. It is easy to be overwhelmed as there is so much out there. I try to balance my internet time as I find it just too much at times. In addition, I am reading an inpirational book right now called Anti-Cancer, A New Way of Life by David Servan Schreiber.
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DebRox - I work full time and have only missed a few half days here and there. I scheduled my A/C treatments for Wed afternoon so I can work in the morning. Then I usually worked 1/2 day the day after (Thursday) and the same on Friday. I'd sleep all weekend and be back to work on Monday full time. With weekly Taxol I only miss 2 hours on Thursday afternoon for treatment. If I didn't continue to work, I would stay at home and get so lonely and depressed! Good luck in your decision but I say if you are used to working, keep it up.
I have had to slow down my working out but keeping that up too! (I've lost 19 pounds so I work out for the endorphins, not the weight issue)
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Hi Everyone,
Just had my port installed this morning, I don't know if it just made it all more real or what but I can't seem to get a hold of my emotions. I started crying last night and it feels like I just haven't stopped. The dr. called in some anxiety meds for me but is this somewhat normal?
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Hi Ladies,
Hugs to everyone who are already having their treatments.
I start on Monday, May 9th, with Adriamycin/ Cytoxan (A/C). I will be getting Neupogen shots as my bone marrow booster. I will be having Emend, Decadron, and Zofran to manage other side effects. No port for me per doctor's recommendation.
I will keep you all in my thoughts.
Laureen
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Hey everyone. Monday was infusion and Tuesday shot and here I am. A little tired.
Debrok
I was going to the gym everyday bit I am not going while doing chemo. Even if I wipe down the gym bikes etc I still will be getting hit with sneezes and coughs ... So I am doing yoga and walking.
I too have cleaned up my diet.
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Hi Everyone, I am starting with AC on May 18, 4 cycles every 2 wks. Then 12 wks of Taxol. I'm stressed about side effects. I feel like it would help to get exercise and be strong, but I'm still recovering from surgery so really can't do too much yet. I'm happy to discover this community! Warm thoughts to all!!
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@DebRox- Thank you for book info. I have been trying to read more since I've been not working. Afraid of the color chemicals I use daily I've decided to take a break during treatment. And it does add to the stress of this all. But I am starting to walk more and get out more. I went from working 6 days a week, running my own business, gym 3 times a week, snowboarding, hiking, cooking to now sitting around. This has been such an emotional roller coaster. But Im gonna turn my wasted energy into some productive energy now.
You ladies are in my thoughts and all good energy to you..I'm just a few steps behind ya'll in starting
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Welcome VLAZ - We have very similar diagnosis and the same chemo schedule. Sorry you get to join this club, but we will be here to help you get through it!
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I had my first treatment today. Overall, I had no problems. No flushes or discomfort. I had 2 bags of med before the chemo. I am feeling ok, but will eat a light supper and take my med for upset stomach. I did not sleep much last night for looking forward to that. I can't wait to see what tomorrow holds.
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Jrh - keep on those meds - don't wait for the nausea to hit first. Did you have A/C?
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Back on the boards after a few days off. As helpful as reading is, it is also somewhat overwhelming. So am taking things a bit at a time. Cyborg, glad to hear from you. You are the forerunner here, so I have kept you in my thoughts this week especially. It has been really helpful to hear about all the healthy eating going on here. Usually I grow a large all organic, heirloom garden, but didn't get a chance to plant this year. Bad timing. So Farmer's Market will be a good place soon. I am a Northwesterner misplaced in the South. There are Mennonites here who grow good stuff. May not all be organic, but as close as you can get. Someone mentioned the hormones/additives given cows now and a link to cancer. Am thinking the same. I love dairy. But think that as good as I have been about keeping healthy, there seems to be no way to avoid additives/chemicals in the environment and in the grccery. Only way is to reduce exposure somewhat. Are there any out there who are self-employed? My husband and I are. He is a visual artist/recording engineer and I have a small web design business. Have already had to turn down two accounts as I can't take on new clients right now. It is very frustrating and puts pressure on my husband. Am also trying not to scare my current clients. Have a strong reputation on giving quick service and hand holding. So have had to change some of my terms of service temporarily in anticipation of chemo. But the positive is that I do get to work out of my house for the most part. All the best to everyone. So glad you are willing to reach out.
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VLAZ - Me too! Pic line in on the 18th and 4 cycles every 2 wks, starting May 19. (They haven't mentioned follow up after that.) Let's get across that finish line together!
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