Starting Chemo September 2015; join us!
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Grey - I am so sorry you are feeling this way and I hope you can find someone to talk to. I feel like this is all a horrible obstacle course that for some reason we have been given to conquer. I feel like I'm trusting the medical profession and doing what I am supposed to do and really don't have a choice. I wonder if it is worth it, but for my family it is. I often think of just stopping and going with the 50/50 chance that it's gone from the lumpectomy. Luckily no one will let me do that.
I am mad when I look at all the others who are gong about their lives just like I was supposed to be, and I get angry about cancer, but even more so about "why me?" I have some "lucky" friends who had BC but didn't need chemo and that makes me mad and others who compare a medical blip they went through to cancer and going through chemo. How dare they!!! But most do not really know what this is like. Thanks for all of you who do!
The port was not fun - I hate when people say "it wasn't that bad." For me it was the first step to what was coming. It didn't hurt AT ALL. They are so good at taking care of pain. I shared before that when the sedation hit I just lay there under all the blue covering and let the tears flow. They thought it hurt so they gave me some more sedation. :-) I think it's a very emotional thing, but then when I went for chemoround 1, it was a no-brainer. It is way easier than what I'd imagine IV to be and I have great veins. (I did get freaked out thinking about where it goes in my neck, though.)
Again, the recommendations were spot on from my MO (who, by the way, just told me at the first appt - "This is the plan".....nothing to decide, etc.) I love all of your posts and live for them each day. I woke up early and checked and there were only a few but then you all jumped on and got my morning going.
Thank you all for your honesty and sharing and Grey, I hope you will reconsider. We are here for you.
(((Hugs))) and happy weekend!
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TFoxy20, you should definitely ask about timing when you go in for the shot, as you say it is your treatment. Just FYI, no one said anything to me about Claritin for bone pain after Neuprogen (same issues as Neuplasta) and frankly, I didn't ask. My MO's office recommended nsaids for the pain. I took both Aleve AND Claritin. Enough people on these boards with my same regimen recommended it that I just did it. Aleve twice per day per bottle instructions and one Claritin pill a day taken at the same time I got the Nueprogen shots (which are once a day for five days, self admnistered or should I say hubby administered.). I didn't start the Claritin in advance, fwiw. And I did really well in round one. Will follow the same regimen in round two, which is Monday...
Grey, what the others said about getting support to fight this beast. I think you can do it and I think you will be glad you did. Whatever you decide, ((((((((((((((((((hugs)))))))))))))))) from me!!!
SouthernCharm, I really, really appreciate your sharing about avoiding doctors...I haven't completely avoided doctors...but I haven't been good about going to docs either, including not getting mammograms nearly as regularly as I should have. I, too, went to the doc about the tumor when it started to hurt. I had worried for months that something was wrong, however. I couldn't really feel a lump until it started to hurt but my nipple had become inverted. Ironically, I was seeing doctors much more than ever during that period because of some vision issues but I never mentioned my concerns about the nipple. The vision issues turned out to be permanent but not treatable, and something that wouldn't get any worse. The nipple, otoh....(it is gone now, tumor was located right below it). I would do things differently if I had it to do over, but I am NOT going to beat myself up about it though. Still, it is nice to hear I am not the only one with issues around the medical world. Comforting in a way to have the company.
As for me today: the hair shedding started in earnest last night. Serious shedding, but nothing is coming out in clumps yet. The thing is, I have much thicker hair than many people, and even after all the shedding, there is lots left. I still can't bring myself to buzz it although I know that my hairdresser would fit me in today if I called and asked....does anyone have tips for how to keep it from shedding into my food or (as happened last night) into the popcorn I was sharing with hubby at the movies last night during date night :-(. I wore a broad hair band out to the movies. It looked cute, but didn't really contain the shedding. Or should I throw in the towel?
My plans for this weekend are to take some walks and otherwise do as little as possible before Monday's chemo. I hope the rest of you have a restful weekend also!
Octogirl
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My scalp has been sore for three days now, but not red or anything. Hair isn't dropping out yet (but I've only had one dose (Herceptin / Taxotere) on Sept. 10). Any idea what this is? Prelude to hair loss maybe
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They put me under for my port. The procedure only lasted about 35 minutes. The hardest part was the following days because the anesthesia just wiped me out. I had a biopsy the following day. Went back to work on Wednesday, but I was really tired. Thursday I had a meeting at the cancer center so took it easy that day. Friday finally felt my energy was back to normal .
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tessu, my head hasn't been sore, but it has been very tingly and itchy, which I think was a prelude to the loss starting. having the same itching in other areas with hair, which is much more annoying in a way! SC: unfortunately, no hair is not long enough for a clip or ponytail...so I guess I will just try wearing a hat as much as possible.
Grey, hugs and peace to you.
Octogirl
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grey: these decisions are so personal that, of course, we must all respect each other's choices. If you are struggling to get treatment, though, due to lack of resources please talk to resources around you--the American Cancer Society can link you. There are programs that can give you a ride home, link you to a buddy for support and even potentially see if there is a way to assist with your financial constraints. I hear you not seeing your life as worthy as all of ours. I'm so sorry you feel that way but please know that there are people out here who believe you are a precious life in this crazy world
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my first chemo ended at 5 and I got nuelasta the next morning at 930. As far as I'm concerned it worked because I caught a cold but never was sick enough to be hospitalized.
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I am day 18 post first chemo. My hair started shedding day 13. I have very fine hair so it was noticeable immediately. I buzzed it off day 14. Day 16 it started to fall out in earnest. Last Night I filled up 5 sheets of the lint roller. It felt great. That lint roller really takes care of the itchiness. Monday is my second infusion. I figure skin bald a few days later.
No none of this is easy or convenient. We live off my husband's VA disability so things are tight. The hospital here has a van that can come pick you up for treatments. So far I haven't had to use it but I will before it's over. I've missed all the back to school meetings for my special needs kids. I haven't been able to help with their therapy since surgery in July. I just got to a place inside myself that decided heck it's just a year out of everyone's life and they will get over it. So here I am deciding to focus on me for a change. I spent some savings on what I need, I've abandoned my obsessive need to organize and structure all our lives and I've cancelled thanksgiving and Christmas. No one is going to miss 1 year out of their life, but they would have missed a dead mother and wife.
I hadn't seen a doctor in 4 years since the birth of my last child. I had never had a mammogram before. I felt the lump on father's day, by July 15th I was told I had cancer. It's been a blur of doctors ever since.
I understand being poor. I understand being scared. I understand being alone. I understand hating doctors. I don't understand accepting death as an outcome when there's still a chance and there is so much help out there. People live quite well on government help these days. There is a lot of help out there you just have to wade through the red tape to get it.
I'm going to solemnly pray for everyone who lives in doubt and fear. This disease isn't fair to anyone. It rips families apart and beats people into the ground. All any of us can do is have faith, fight for ourselves and let people love us through this.
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I did the deed today (morning of day 16). I should say I made my husband do it. I couldn't bring myself to shave it myself. Damn that was hard. Lots of crying but it's done.
For those still holding out: I started shedding on day 12 with it getting heavier each day. In the shower this morning it came out heavily mostly in the front.
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Sailorgirl
I am so sorry you had such a difficult time with the port. As I said for me it was so easy and I realize everyone isn't the same. First of all I had light sedation and honestly didn't feel a thing. I am so confident of my surgeon. He is the best. I had no after pain yesterday and only took a naproxan last night when I went to bed and not for the port but for my pain that I always have in my back when I go to bed (The reason for finding out about my metastasis) Your surgeon should really have given you light sedation and you would not have to endure more than we have to.
God Bless us all.
Rosieo
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Grey, I'm thinking of you. I can hear the stress and anxiety in your posts. This is a big thing, you're allowed to freak out, be stressed and be scared.
Just don't let fear keep you from having a life. Fear/anxiety is literally the most treatable issue there is. Take a break. Reassess. You could work a while, put a support system in place for yourself...make a plan or get financial assistance. Start addressing this in a month or two from now and everything will be ok. Just don't hide from it forever.
My hospital gave be a binder filled with helpful resources.....did others get this too? I'd be happy to pull any of the national ones and post the info here. I'm in VA so I don't know that all the local resources would translate.
In there they had things like a company who cleans your house for free when you are undergoing treatment for cancer, free rides and shuttles to your appointments. They had information about a social worker to call who can arrange all this for you. There was information about several support groups too.
The thing I think is most helpful is having them set you up with a buddy, someone who has gone through what you're going through and come out the other side. I think just having some more social/emotional support is a great thing. Plus that person might be aware of resources that could help.
Lastly, we live in modern times, which means scientific advancements like anti depressants and anti-anxiety meds. My opinion is whether you like taking medication like this or not, get it if you need it. Why make things harder if it could help you better cope? I take Wellbutrin and I'm so grateful to have it. Cancer is hard enough.
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Annie, that's been getting me through too! It's only a year. I can do a year.
My child is 2, he won't remember me going through this. But if I can be here to see him finish high school, etc. the awful, grueling coming year will have been worth it.
One other thing and then I will shut up. So far I've had 2 MRIs, a PET scan, a port put in and my first round of chemo. I was scared shitless for each one. And all of those things were not as undoable as I had built them up to be in my mind. I know that hearing someone say that may seem silly, but its true for me, and was a reminder that I can make thing harder for myself. I try to keep reminding myself that when I'm melting down
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I actually bought the Breast Cancer Husband book for my husband when this first started. He's never touched it. ☹ I really wish he would, and he may get a reality check from statements like he made to our counselor that I "emotionally checked out" for weeks when it happened. Not. Even. Close. I was freaking awesome considering what I had to juggle... and the fact that I did it entirely on my own.
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Grey, I am praying for you. I am praying you can find hope and energy to fight for yourself because you are important.I agree with everyone that there is help for you if you are willing to seek it. By trade I am a nurse, I am sure there is a social worker through your hospital who could help you arrange transportation. I also believe the American Cancer Society has volunteers who will give rides, checkout their website. the social worker can help you find the financial assistance you need. God Bless you
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I'm so happy for you about your husband's tender reaction, Southern! It's what we all want and you definitely deserve that. Lovely. 💜
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I will be celebrating 30 years with my wonderful man next week. He's been my rock. My hair is coming out heavily now and he wants to be the one to cut it. I asked if he'd be ok with me crying my eyes out while it's done and he said he can take it. That's whats holding me back. I know I'll lose it and just don't know who I want with me to see it. Some have made a party of it with friends and I have a few girls that would be there for me but I don't want to put them through it. Hubby will be able to handle it, though he said he hates to see me cry. Hey, 30 years together, he's seen some tears along the way. What's a few more...now, just picking the day. So far, I'm keeping it in a clip to control the shedding. I have a couple of hairy dogs that shed so I don't need more hair floating around...wish me luck on making the decision soon.
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the shedding was freaking me out and it was so upsetting. That's why I decided to shave it. Jimmy did it. He kept apologizing for never having used the Clippers and not knowing what to do. It was a good laugh because Dude really? what you're gonna give me a bad hair cut? It's been a few days and seeing myself bald is less traumatic than it was. Just like chemo is less scary than it was.
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grey, I understand how hard it is being poor. Just remember, surgery is 70-75% curative. And you are er positive, so you are eligible for tamoxifen which helps even more. What percentage effective were you told chemo is? My understanding is that in most cases it adds about 3-5% survival percentage. So I guess what I am saying, as unpopular as it may be, if you can't do chemo, have some confidence that doing surgery and tamoxifen gives you a significant advantage. And just go for testing, mammograms, follow-ups, etc. to monitor your remaining breast tissue.
Gentle hugs, and I feel so bad for you.
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Grey, you don't talk too much. And feeling bad for you doesn't mean I feel sorry for you, i feel bad for all of us who are going through this crappy process.
Did you have clean margins when your tumor was removed?
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Twiggy, good for you for doing the deed and getting through it. I am proud of you.
I am on round 2, day 2, and feeling like shit again.
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Grey: There are resources available to assist with mortgage and other living expenses for cancer patients, as well as transportation, etc. Below are some links, but if these don't work out, do a web search, there are others. A friend's MIL had her mortgage covered by one of these organizations when she went thru treatment. Whatever you decide, I hope and pray all the best for you!
The below organization is accepting applications for residents of CT and NC:
This site can lead to other assistance:
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hi everyone,
I'm trying to catch up. We had a family vacation for 4 days. I did pretty well until the last night and then I overdid it and wound up sleeping all the way home and then went to bed.
I cut my hair short last Tuesday and it's really shedding heavily right now. I'm 18 days out from my first TCHP chemo. My mail order wig came in the mail today and I hate it. I'm taking it to my hairstylist on Tuesday and hopefully she can work with it or I need to send it back and start over.
I bought a cute hat while on vacation. It's a wide brimmed straw hat and it has beaded cording around the brim. I make beaded jewelry so I'm going to make more beaded cording for my other hats. That will be a fun way to decorate and personalize them.
Grey, I m sorry for your struggles. I hope you can find the help you need so you can focus on making the best choices for you. Cancer is tough enough to deal with on it's own without other parts of life getting in the way.
Hugs to everyone!
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grey, clean margins are a huge deal, at least for me they are.
I have seen many posts from women with one positive node that haven't done chemo that fell into your oncotype range.
My pathologist told me any expression of er or pr is viewed as a positive. But it is the estrogen receptor that says use tamoxifen or an AI
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Grey...I don't mean to pry, but maybe if you could share what state you are in we could crowd source you the type of help you need. Someone here may be near you or know people who've used resources in your state.There's power in all these women and our researching skills.
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I was going to day the same as edwsmom. There is power in a lot of women coming together to solve a problem. 👊
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Chemo round 1 felt like I got hit by an 18 wheeler the next day.... Chemo round 2, much easier. Volunteered at a 5k and managed to stay standing for 6 hours. Praying to hold out and run a 5k tomorrow.
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chevygirl, good to hear from you and yay that Round Two was easier! Good luck on the 5k tomorrow!
Octogirl
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Grey, you do NOT talk too much! Please please stay in this group if you get even the tiniest bit of solace and support! I hope some of the resources the other women posted can give you concrete help with your life ((((hugs)))
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Last night after shampooing, my hair started falling out big time. Day 16 after first chemo dose.
So glad I sewed a tricot cap to contain the shedding. Years ago I embroidered an apron with "Everything tastes better with dog hair in it" (we have a toller
) ---- Dog hair is funny, people hair not so much Not yet ready for The Shave.....
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I used to work at the hospital(in the pharmacy) where I was supposed to get the Neulasta today. I talked to the pharmacists about when to get the shot. The agreed it was at least 24 hours after chemo. Apparently if given too soon after the chemo can attack the Neulasta and make it less effective. Hopefully it wasn't a mistake but I will go in the morning to get it. I gave all the power to the hospital where I consider my treatment team. I am only doing chemo locally for convenience. It is quite clear that I need to be on top of my game and paying attention all along the way. I am sure I will hear about moving the shot out a day.
Of course the day I get my first chemo my dh comes down with what he thinks is the flu. Thankfully I still have energy to run around with my 22 month old by myself. Hoping he gets better before I hit a wall. It is hard taking care of myself when I have to take care of everybody else.
I had to decide between two chemo regiments and I really wish my Oncotype wouldn't have failed. I think I would do chemo no matter what but if it had come back high then I would have done the more aggressive approach. I feel like I am going in blind.
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