Starting Chemo, November 2013 Group
Comments
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smlvr.....sorry your ouchie...I TOTALLY can relate. been on pain meds for 12 years now....pain MUCH longer pretty much since 10 years old. took along time to be taken seriously!
my daughter had kidney stones too. ...they suck and all they can do is give pain meds and wait em out. large stones they can break with ultrasound like treatments. Generally its the wait to pass treatment. ... Im told its as bad as labor pains or worse....shes in my prayers! as are you! i already lived in pain prior to chemo....it just intensified it ...and apparently its a time thing too. It seemed all my already ouchie parts worsened. ..So I too play the try not to move game and prop with pillows, watch tv and take extra pain meds and TRY to sleep through it ...some days I just have to drug sleep due to the intensity. I remind myself this to shall pass and I overcame cancer!
now tomorrow I get to find out from Nero my new oddity....the brain cyst and what's next! seems like my whole life I get to be the zebra patient! all I can do is laugh at this point....otherwise I would just crawl in a ball and give up! God then reminds me the s trial are to help others overcome! then He brings someone to prove it! so I smile and keep on trusting! hhuggs!
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smrlv: Yay for your last one! Hang in there. Staying in bed souds like a good idea. Sorry to hear about your daughter health problems. Hope they figure out soon what's going on.
Audra: Glad you are feeling fine. It's true that in healhy body healthy mind.
Wally: I still have two more treatments of Taxotere. I'll be in the trenches with you for a little while. I too wear a mask when in public places.
Jab: I was on Oxycodone when I had bone/ muscle/ joint pain. 1 every 6 hours seem to do the trick, then for sleeping I took 2 Benadryl at bed time and I slept fine.
Paulette: Trust in Him and He will strengthen you!
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All: Does anyone do or plan to do a vitamin C IV treatment?
Here is some info:
http://www.riordanclinic.org/research/research-studies/vitaminc/protocol/
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Anybody faced or facing weight fluctuations during chemo? Did the dosage chemo drug also change with every cycle accordingly?
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BanR, I can only speak of taxotere, not its cousin taxol, however I gained 14 pounds of water in my legs and feet and belly during treatment. Ugh! I dropped it quite quickly in the 5th week after stopping. Audra, so glad you're feeling good. I'm getting sooo impatient about my hair. I'm in rads land. You know how rads is sort of said to be nothing? Well, compared to chemo it is, but it isn't exactly nothing. I'm so over this entire thing, that the final stretch is getting really really hard. I have not patience left.
I'm having to draw on my reserves to deal with my youngest son's drama, and am finding I have no reserves. I fall apart under pressure rather that rise to the occasion. It's a new thing for my family, they're used to being able to all disintegrate and count on me to pull it all together for them.
My heart goes out to those of you still in the chemo trenches. Wally, you are so brave! We are cheering for you on the other side, extending our arms to you to catch you when you make it, no matter how depleted you will be. Pam, Lisa, Amazon, Toni (and whomever I'm forgetting, sorry): we are waiting for you.
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I'm sorry to hear you're suffering, Pat. Hope it's done soon and your normal strength returns along with it. What about rads are you finding especially hard?
BanR- I slowly lost weight on taxotere. About 12 pounds though I know there is some water weight lingering. I can see it in my face.
I need some perspective. I'm 12 days out from my final TC and feeling much better. However I find I still need a nap everyday even though I'm working from home on my sofa. Somehow I thought that feeling so much better my need for daytime rest would have diminished by now. Anyone else still this tired at this point?
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Pat, I hear you about being tired of this whole ideal. I am dreading my appointment Friday with RO. Not that it will be bad, but this seems never ending. I am also losing patience with the hair situation. I am the one who is the glue in my family, also. Before BC I got all sucked into the drama. But it's not good for me and I have learned to tell them all to grow up and deal with it. Of course, my kids are older and they should be behaving like adults!
Quirky, I have heard it is common to have fatigue from chemo for as long as 6 months. Are you having radiation too?
Even though I am moving on to radiation, I will not leave you all behind! This group is the best!
Hoping and praying you all feel good and have strength. Last night I took the hydro and I could not sleep at all!
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Smrlvr - I am having radiation. My first meeting is also on Friday. Small world!
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Here is a site with some interesting videos to watch about our body's natural way of healing:
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Amazon: I was specifically directed NOT to take Vitamin C during chemo, not even the little bit that was in some iron supplements, as it would interfere with the chemo. Not sure how long that applies after chemo is done. -- Ellen
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ellen: I was warned about that as well that's why I am NOT on it, but considering getting on a IV vit C therapy after I'm done. It's also cancer killing and would be a way to restore my body as well as prevention.
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Ellen, I was told the same thing regarding Vitamin C. No supplements and to take it easy on oranges, OJ and such. Hard for me to do as I love oranges........
Paulette, I had a kidney stone once about six years ago. It was the most horrible pain I ever had. Hubby and I were just finishing up a house project and he had ran to Menards for something or another when it hit me. Never having one before I had no idea what was causing the pain. Ended up passing out in bathroom after throwing up several times. Hubby came home and found me, managed to get me into the truck and sped to ER. The nurses guessed right away it was a stone from the type of pain I was having. Unfortunately mine was very large and impacted. I was admitted and 2 days later they did surgery to get it out. Were not able to use the water and laser due to its size and impaction. Way worse than labor pains. I thank god I never had another one since.
BanR, I gain and lose the same five pounds on weekly Taxol every week. I do believe it is the steroids. I gain it the day of and two days after infusion and then it starts to come off just in time for next weeks treatment. Nurse said that is very typical to do that.
As I was applying my eyebrows this a.m for my Taxol treatment, my hubby was in there "coaching" me along. After about two minutes of hearing him tell MRI was doing it wrong and to use smaller, more natural strokes I banned him from the bathroom. Love that he wants to help but sometimes a girl does not want to hear make up tips from a man. He wasn't going to leave until I threatened drawing some on him so he can show me just how much more natural his technique works. Ugh, I created a monster!
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What about rads? #1) Fatigue. Capital F. Tiring, but probably a little less so for those who go into it without doing chemo before, wish that were us. As my RO told me, I have no reserves left, and it's two steps forward, one back. I've got a little asthma from the radiation, mild but I don't want it. 2) I'm finding I've got mental fatigue as well as physical. This has been a long long road. No emotional reserves. During chemo I knew I was in the trenches and expected life to be hell. Now it's not truly that bad, but I'm just less psyched up for any difficulty. What I'm going through is NOTHING compared to those still in chemo, but I just can't handle much more. I've been positive and strong and resilient for what seems like forever, but I'm hitting empty. 3) Sleeping: remember post-surgery needing to make a nest of pillows? It's back. My boob and underarm and arm don't feel great at this point (nothing terrible, just uncomfortable enough to bug sleeping positions).
Sorry, but I'm whiney. I want hair, I want energy, I want to be free of pain, I want this stinking port OUT, I want to wear pretty bras, I want to go out dancing, I want to plan my day without worrying if I can do more than two things. I want to get through my days without seeing or speaking to any medical personnel. I've had it! Screw BC!
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Hi Ladies,
Thanks everyone for tips on pain meds. I completely lost it yesterday with my MO team. I'm not sure how it works at other hospitals but here you call in to Oncology and can get the charge nurse in the chemo room. She has a direct line to the MO. Well, I called in, cried, and basically said my MO needed to get 'with it' cause I was in agony. I really hate crying in public, not to mention I felt like an idiot doing it, so don't consider this one of my proudest moments, not to mention these people are on my side... Anyway within minutes my MO called me. I am on more of everything and am at least sleeping so that is a very good thing. Like many of you I am very tired and am still pretty much in bed most of the day. As you said Paulette, this too shall pass.
All - NOV girl viritual celebration for last out for chemo for all. So far this is what we know about who is still left in Chemo land.
Wallymama - looks like you are last out right now - week of April 21st
Northwinds - you are second last April 2
Lisa - you are third out - week of March 31
Amazon - Im guessing you are out March 24 if you are on the same protocol as me
JAB - my last one is March 13
Have I missed anyone? If not the date for the Last Out party is the week of April 21st.
Amazon - I too was told NOT to take any suppliments as they can significantly interfere with treatment.
Pat/smlvr - I hear you with respect to being the glue and not being very good at it right now. I figure I have to deal with my own stuff before I can really help others effectively. With me, it is my parents. My dad was just diagnosed with skin cancer again but I just cant get into the resulting drama. I am just too tired.
BANR - I too have gained weight - 6lbs, but it is up and down with the taxotere mostly being in my abdomen and legs.
I got an appointment to see my BS with respect to the new node activity. I hope to know more next week.
Have a good day ladies
JAB
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I too gained weight on Taxol, 5-7 lbs. My wedding ring is tight now and it's definitely in my belly and rear. I guess my husband needs to become an ass man instead of a boob man.
I don't know who asked about blood clots and tamoxifen - my MO put me on baby aspirin while on tamoxifen. He explained that the risk is similar like when on birth control.
I am 1 week out from last chemo and I have blonde peach fuzz on mu noggin. I was not a blonde before.
I was hoping to start going to the gym again but now I am discouraged by the fatigue that may come with radiation. But I have almost 2 months before I start (since I need to finish up the fills to my TE) so I think I should at least try.
Amazon - I read that the vitamin c infusions are some of the hoax treatments offered at Mexican cancer clinics. I am not sure if there is any harm to them but based on science there was no benefit.
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Inks- it was me about the Tamoxifen- my MO made it seem like not a big deal to fly 15 hours while on it but everything I've read says otherwise...thanks
I am so sad and sorry for all of you still feeling the pain! Seems to be never ending and I understand you are so over it and done already~! I have to say there is light at the end of the tunnel and hang in there! I really really feel for you all and had such despair and exhaustion about a month ago...and now I can go through the whole day without resting or stopping even and no 'exhaustion' feeling' so it does get better!!! Hang in there!
Smrlvr and Pat- I hear you on the kid issues too, since I got BC it has really helped me to let the kids do what they will since they are older as well- and they will figure it out- I am WAY less stressed about their issues since I have had this to contend with and making it through each day was a struggle.- it has really changed my perspective on the kids. I hope her kidney stones get zapped or through and I hope your son gets adjusted as well. And I hope they give you the respect and concern you all deserve going through this!!! I was the fixer as well and it seems they are all doing fine without me 'fixing'/meddling/over parenting... whatever you want to call it
I also hope the radiation goes by fast and you start gaining energy and your skin holds up! YOU CAN DO THIS!! And you WILL go dancing again! Chemotherapy ends and we will all get through this!~
The hair thing sucks though, I feel so good and am 'back' it seems except I have this pinchy, hard hair on my head that needs adjusted and fixed and looks totally NOT me! I am wearing it out and at home just bald...but growing TOO slowly!! I am taking the biotin too and it doesn't seem to do much...but I AM expecting chia pet kind of thing and it is NOT happening!
Lisa, Wallymama, Paulette, Ellen, Quirky- YOU will feel better !!! Hang in there!
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OK,it took me 15 minutes to get a photo not blurry, but this is all of the hair I have so far, and I'm 7 weeks PFC tomorrow! VERY frustratingly slow..
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My 15 year old says I look like a baby bird...ha!
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Audra, you look Wonderful!
My hair is coming in now. Finished 6 Taxol today. It is coming in WHITE! Not enough there yet to take a picture. It is so white that I don't think it would show up yet. Prechemo hair was brown with lots of added blonde highlights that helped cover the gray I had coming in. I imagine the white fuzz will fall out eventually or my true color will grow in and cover it? Not sure if I could pull off white.......unless I ended up looking like the Dragon girl Kalesshi from Game of a thrones. Now her hair I could handle!
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Mine is also coming in white. My hubby noticed it. My friend went thru chemo, etc. 6 yrs ago and she said that her hair also started off growing back white, it eventually changed. This too shall pass.
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I finish with Taxol March 20, then Herceptin for 6 months. No rads for me. I've gained 7lbs this round of chemo. Like many of you I've gained in my belly and legs. My MO said it should come off quickly once the steroids are stopped. I asked her for it in writing. She laughed at me.
Taxol #9 tomorrow.
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My hair started out white (which I would prefer) but is getting darker, particularly on the back and sides, as it grows. Seems darker than before chemo.
I met a lady a couple of days ago whose hair had come in dark then turned a pure, beautiful white. I was envious!
Just a couple of boosts left to go on radiation, and I am still barely pink!
Ellen
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Rant mixed in with pity party alert....
I am so, so tired of handling everything. I'm tired of being told attitude is everything, that I'm handling everything beautifully, what a trooper I am. I'm just tired of handling and having so many bleeping things to handle. I know I have the strength, I'm just tired of doing it.
I have a belief that is somewhere between everything happens for a reason and there's something to be learned from everything. My mom says everything is character building. Well, enough grand design. I've learned enough for 15 lifetimes. I have a enough ****ing character. I just want peace and quiet in my world. Why can't everything happen in a linear way? I know so many of us have other big family crises going on while we're dealing with BC. It isn't fair. If there's a grand scheme, why don't we get a break so we can put our oxygen masks on before we have to take care of others'?
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Sending you a giant hug, Bec. Seems like you could use one. It's all going to get better, really it is.
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Audra - I would take your "baby bird" look over my "little old man" look. Your hair looks great!
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My RO was a riot this morning. He loves the phase of new hair growth where it is soft as velvet on top. He says that phase only lasts a couple of weeks, and I guess I am in that phase now. With permission, he really likes to feel it. One of the techs wanted to feel it as well.
Something to look forward to, ladies, and your hubbies as well! -- Ellen
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Great Pics Ladies... Glad to see your hair coming back!
I have been doing a manual lymphedema rub on Flamingo's back, left side and arm for several weeks. It helps her a lot.
She will be starting radiation 4-5 weeks after her BMX on April 16th.
Rich
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bigT, quirkygirl, jab, inks, north winds, pat: just one more question. Did your MO change the chemo dosage also every time ....They do take our weight before every chemo infusion.
Audra:you look so beautiful... I like the way you have done up your eyes...
Ellen and Amazon : the fact that vitamin c kills cancer cells is well known in the medical community. Maybe that's why they no to added supplements of vitamin c... But I did consume lots of fruits during chemo...citrus fruits do have a good amount of vitamin c. So now that gets me thinking... I hope natural sources of anything shouldn't be harmful.
After how many days post chemo should we begin rads?
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BanR, my chemo dose never changed. But my weight only fluttered up and down five pounds. If it was more than that I would think he would have adjusted the dose. I will ask him at my next chemo treatment.
Bec65, ((Hugs)). I know exactly what you are saying. I always get the "you are so positive" and you have to stay positive you know, attitude is everything. Yeah, right. Some days my attitude is not so great. I put the fake smile on at work and home for my boys but damn, I just want to be crabby. And why shouldn't we get to be? With what we are all going through we have the right not to be Little Miss Sunshine all the time. Think about what we all do on any given day. Pay bills, house chores, kids, hubby, whoever up and off to work, then get ourselves going and out the door to work, treatmen or whatever. Come home to making meals, homework, and Handle all the family dramas. Right now our oldest son caught fiancé on a dating web site, so of course mom is the one to handle it. And he wants to move home with his daughter who we adore, and his dog who we do not adore. So mom has to pick up the pieces and get them two talking it out and smooth everything over . Really? Am I really the only one who can deal with this meltdown? Ugh.................
Wouldn't it be nice if we could all just could go to our quiet place and not have to handle whatever the world throws at us and family? But I know if I stayed too long I would get lonely without the chaos of my households and loved ones. However I wouldn't mind it once in awhile!
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Northwinds: do let me know what your MO says about this..thanks
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