Starting Chemo February 2013
Comments
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ywheels22... thanks for sharing the bad side of all of this.. we need to hear the good and the bad and need to feel like we can share whatever is happening with our treatment.
I so hope the next time will be easier for you...
and wish you all the best with your treatments... blessings. -
ywheels22 -I had my surgery a week before you and I feel the same way. I am still so so sore, I think its the dang expander's. I HATE THEM. I pray it gets better because there is NO WAY I can work with this tightness and pain. I would think by now I would be healed up from my Jan 8th surgery but maybe not. I just hope this is not how it is just going to feel until I can get them swapped for implants after Chemo. I so miss my cycling class and just plain being able to clean my entire house! I clean a bathroom and have to rest. I guess maybe Im a slow healer or it could be the chemo. What I am being told is I am not getting the shot unless I "need" it. They are checking my white count and telling me to take my temp daily and try to wash hands a ton, stay out of the public as much as I can ect.... If my white count drops too low Im sure I will have to get the shot. I hear it is like $9000 a shot so maybe my insurance company wants proof I need it?? I dont know Im just throwing that out as a guess. Or maybe my doctor just doesn't do it unless you "need" it. I was told my white count was low on Friday so I am trying to eat really good and take it easy. I am suppose to go back to work in about a week but I just dont see that happening. I cry allot too, have my good days and bad days. I think we need to stay positive, but we all deserve a pity party now and then too. We are going through a hard time. Hugs to you!!
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Yes to the yoga pants!!! And yes to anything that makes you feel more comfortable!
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My first chemo is Thursday and I'm trying to decide what to do about my hair. If I should even bother cutting it now or just wait and shave it when it falls out. It's about shoulder length now. I don't want to shave it all now because I am curious to see how it falls out. Weird, I know, but I am curious to see how it happens. Also, I have doctor's appointments and tests every day this week plus the chemo treatment and I'm working so it probably wouldn't be until next week before I could get it done. Part of me, the cheap part, I'll admit, thinks it would be a waste to do it then since it's all going to be gone in a couple weeks anyway. This has all happened so fast, I haven't had time to plan ahead for much of anything. I guess I need to get my chemo bag together as well. My son got me a Gumpy Cat tote bag for Christmas so I'm going to commandeer that. He also gave me his fleece Angry Birds hat to keep my bald head warm. It's a start.
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I'm with you tangles and ywheels, and I haven't begun yet! I can't image chemo se on top of the port discomfort and recon pain. I went direct to implant at 4?? ccs, and I'm still healing there and have that dang hematoma. Thank you for your honesty and making us feel like we are not alone doing this.
My mo said the reason the neulasta shot sometimes hurts is because is forces your bone marrow to produce white blood cells - hence the bone pain. I'm supposed to get it day after chemo. I'm going to take Claritin to see if it helps.
thanks for leading the way. Yes to fuzzy socks too.
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Hi Heidi. I'm shaving mine to .25inches on day 14. The hospital wig people say to do that length, not all the way. They said I could wait to day 20, but I don't want to see a strand drop out if I can. I want to control this. I have had bangs my entire life - it's going to be weird. I watched some you tube videos of it coming out and of it growing back. They helped me with the decision. Do what makes you feel right. The grumpy cat and angry birds theme sounds perfect.
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I have had bangs my whole adult life as well, and that is what I miss the most. I'm actually going to buy online velcro bangs so I can attach them to my scarves and not look so chemo'ish! I find I prefer my scarves at home over wearing my wig. Somehow I just feel that my wig yells WIG, even though it looks pretty natural.
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I rushed & cut my hair off short the day after my first chemo. Reason was I wanted to see what I looked like in short hair as Im going to end up with that down the road. Another reason is I didn't want 8 inches of hair falling out. Now with that said I do not like it. I kind of wish now I would have waited another week to do it. Oh well. Cost wise I didn't pay to have it cut as I work in a salon. Not sure I will shave or not. Guess when the time comes I will know! I keep looking at my wig thinking I should try and get it styled and fit right before I "need" it but I just keep walking by it. Maybe in denial a little bit:-(
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Ulta sells hair u wear attachable clip in bangs. Maybe you could buy them and Velcro them into a hat?
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Tangles: I am with you totally on the mast/recon pain. I actually took last week off from injections because it was too tight. I may ask to take the week off of treatments just to alleviate some discomfort. I am better today (other than the boob pain). And I did take Claritin. I don't know how much it helped and I will take it again. I am going to ask my MO about the Nuelasta shot. Maybe he can give me less.
iamNancy & lmimp64: I try hard to be positive but at the same time I had to be honest. It is not all good but we have this board to help each other and we all know we are doing this. I thought of many of you while I was curled in a ball Friday and it helped to know I am not alone in the pain. It stinks but it is what it is.
As far as hair. I cut mine short (above shoulder) and have my wig styled and ready to go. I also ordered a bunch of hats. My hair stylist will shave what's left of my hair when it starts falling out. I am not sure how I will feel about it. I realize it will grow back, and might even grow back better. I think it will be okay because at least it won't hurt!
Good luck to all of you. Hang in there.
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slv, I feel the same way about a wig. I think I'd feel goofy in a wig and I don't think I'd be fooling anybody so I'm just going the hat/scarf route... probably... maybe. Depends on how crappy I look once it falls out. As far as shaving goes, my oncologist recommended not shaving all the way down to the scalp as, according to her, it will grow back faster when the chemo is done. Something about the chemo-damaged hair follicle pushes itself out 21 days after chemo is finished and then hair begins to grow from a new follicle. Shaving down to the scalp hinders this process as it further damages the follicle or something. She also said that some people keep a little ring of hair around their face (if they don't shave it) at the hairline and can use that to peek out underneath a hat or scarf to look a little more natural. I don't expect to be that lucky. I fully expect to look like a some kind of refugee chemo patient/nuclear disaster survivor. That way when reality turns out to be not quite that bad, I'll be pleasantly surprised!
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To DiZZyMom: I too feel your pain about coffee. I have always loved my morning coffee...no more. I can't even think about it. I started drinking tea with half n half, or a chai tea latte. I also am drinking green tea at night as well. I hope we will both enjoy our coffee again in the near future. Good luck to you.
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You know, ywheels, it's okay to tell it like it is. The good, the bad and the ugly of it. I think that's why we've all come here. So we can ask questions, complain, vent, give encouragement and receive encouragement from people who are going through the same thing at the same time. We'll all have our moments. It's nice to have a place to talk about it with people who understand.
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I start chemo tomorrow. I have a port, so what type of shirt should I wear? I have no clue what to expect.
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Heidi9256: thank you for understanding and your encouragment! You all do understand. And I loved your "refugee chemo patient/nuclear disaster survivor analogy!
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ywheels, hope you feel better soon and every time is not so tough. Ask your doctor about taking Clariten before and a few days after the shot. It is supposed to help prevent the bone pain. I didn't take it but I am going to next time. My pain was not as bad as yours, but really with everything we have to deal with, preventable pain shouldn't be one of them. I only had a single mastectomy and am done getting fills. But there were a couple that were excrutiating for days. I can't imagine having that pain during the chemo/neulasta SEs. Hopefully, your PS can work with you on getting those fills away from the dates you're getting your chemo.
Hang in there!
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Ywheels22,
That neulasta shot had my body aching for two days. The claritan didn't work but I finally took a vicadin last night and it helped a bit.
Im dreading losing my hair. I want to get it cut tomorrow but I don't know. This is all too much to deal with :-( -
Imcclure- if you have a button up top, that would prob work well. A gal that was getting her treatment beside me last week just had a "cami" type tank on. You could even layer a cami under a button up top. That will give them access to your port & some modesty as well. Good luck to you tomorrow!
I love that this is a place that you can just lay it all out, as is. There is nobody who can understand like another person going through the same thing! And even though none of this is funny, we all need to laugh now & then so we can keep our sanity! So bring on the fear, the tears, & the laughter-nobody understands better than all of us! -
chgogemini - I am dreading hair loss too.. I bought a wig and even though it matches my color exactly, it just looks like a wig to me and I hate it.. I am dreading wearing it for the first time-if I didn't work in an office I think I'd just wear a scarf..
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I love the Velcro or clip on bangs. Great idea. Thanks.
Has anyone done the Look Good Feel Better class from the American Cancer society? I had friends recommend it. I'm going on the 20th.
I've been living in men's Hanes tanks since surgery. Black and grey. I wear them with zip up fleeces and will wear them to chemo to access port. -
I registered for it, but it's not until March 26th. I'll be through 3 rounds by then (halfway!) but hopefully will still get some benefit. I guess I'll know then whether my lashes and brows are going to completely go as well.........
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chgogemini - they're are all kinds of really pretty and dressy scarves and hats that I think would be appropriate for an office setting. Wear whatever makes YOU feel comfortable. Don't wear a wig just because it's what will make other people comfortable. Just google hats for chemo patients. There's also a lot of people making them and selling them on Ebay. I am uncomfortable with my wig as well so I ordered a bunch of scarves yesterday and a couple of hats. I picked scarves that were colorful and with quirky patterns (one has cats on motorcycles). I teach high school and I'm not trying to hide my situation from my students. I want them to see me handle this with strength, grace & more than a little humor. When they laugh at my funny scarves, I'll laugh right along with them and my day will be better for it.
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Yesterday seems to have been my bad day, today much much better and was able to run my normal distance and only a minute slower. I definitely have some bone pain from neupogen (neulasta) but its not too bad. My mouth tastes horrible also. What has worked for me mouth wise is using biotene mouth wash, and swishing with club soda. Also putting a little drop of lemon juice in my water has helped with the taste and allowed me to drink more water. Lemon hard candy help with the dryness also.
My skin has gotten dry and Im finding my palms and soles really dry, and Ive notice a difference you know where. My hair hasnt started to fall out yet but the texture has completely changed and its just hanging there, scalp feeling a bit dry also. All in all Im doing ok and feel like Ive turned corner until next infusion.
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That's great rerunner. I'm glad you are doing well.
I'm trying the Brian Jospehs gel for brows and lashes. The directions say to use it each day during chemo and for 60 days after chemo stops. Many women at my support group said they kept lashes and brows until 1.5 months after treatment. They were pretty ticked when they fell out. -
There is so much going on for everyone. The not knowing is the worst.
I am going to have chemo (starting this Friday) then surgery, then maybe chemo again, and then radiation. I can't deal with the whole enchilada, so I am only thinking about the chemo. I feel woefully unprepared after reading these posts. Thank goodness my partner has been reading the booklets I got from the doctor, and researching on-line. I think I need to go on this site more and read but I am avoiding it. I don't want to have cancer and I don't want to read about it. I don't know a lot about cancer treatment, and ignorance is bliss at the moment.
With that said, I want to be prepared.
Thank you to everyone for sharing the tips and ideas about handling side effects. They will go away, right? I hope for everyone some relief.
I imagine myself becoming this haggard being, with my hair falling out, hobbling about with bone pain, not able to talk because my mouth is so dry. I know this is not true, I absolutely know it is not true. My feelings are up and down and all over the place in a way I have never experienced before. On the other hand, I see myself as a strong strong woman warrior, most of the time, and my friends remind me of how beautiful and strong I am.
I did nothing this weekend that I intended to - didn't clean the house or make a list of what people can do for me. I struggle with depression anyway so I am also concerned that I might fall into a pit of misery.
I have also found meditation, deep breathing, and visualizations helpful. I think I will listen to one of my goodnight meditations to try to get to sleep tonight.
I also have a large fast-growing tumor and the hope is that the chemo will shrink it before surgery. I also feel betrayed by my body.
On the positive side, I am shopping on-line for scarves and hats.
My chemo doctor told me the day of and after chemo would be ok (I am having AC) and then the third and fourth day the worst). She downplayed the side effects of the Neulasta or whatever it's called. I don't believe her now.
Apparently I am a little angry about having cancer.
Thanks for listening.
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Addie- i think we've all been there, & maybe some still are. It's ok to be angry or whatever you feel when you feel it! Not one bit of this disease is ever fair or makes sense & it can be extremely overwhelming most of the time. Stay with this thread & I think it will help- at least I feel it has helped me. I will be thinking of you & be happy to listen anytime. We will all do what we need to, but that doesn't mean we have to be happy about it!
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Ywheels22 and all you other ladies just starting.... Regarding the neulesta shot. The AC portion of your treatment (r u getting 4?) is what really brings your counts down and the shot is to help your bone marrow make new white blood cells to help you fight infection. A trick I found out about and used was to take 24 hr Claritin and an aleve about 1 he before u get the shot and then continue the Claritin for 2-3 days after. Check with your MO of course but it really worked for me! Hopefully it will help you all with the bone pain.
Regarding fills I found that the pain does get better once your muscles start to stretch. After awhile I really don't even notice they are there anymore and now I am waiting for my exchange in march.
Good luck and minimal SE's!
Melissa -
Addie: I don't have anger. I have fear. I'm using that fear to push me to do everything I can to get rid of this and make sure it doesn't come back. Everybody deals differently but we all deal however we can. I'm viewing chemo as a weapon and I'm looking forward to being armed and dangerous. I am starting chemo on Thursday. You're starting on Friday. We'll do this together.
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Addie, Im having ACT, so AC right now.. and my bad days were day 4/5. That said I was able to no problem walk my dog for 1 hr and a 15/30 min everyday including my infusion day. Today I started to run again. I probably could have day 1, 2 ,3 but didnt want to push things and wanted to see how things went first time.
Yes I have side effects, but none of them have been delibitating for me (lucky and touch wood). I found I had to push through or ignore the nausea and get moving and it made a huge difference once I got moving. Yes Im more tired, going to bed earlier and took a nap yesterday. You will be fine, you will get through it and what ever side effects happen for you you will deal with them.
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Hi ladies. I start chemo on February 25th. Getting 4 cycles of AC followed by weekly Taxol for 12 weeks along with 13 cycles of Herceptin. Of course will also be accompanied by 6 weeks of radiation and 5 years of Tamoxifen, oh boy. I'm nervous and trying to learn as much as I can about everything. I have a beautiful 6 month old to keep up with so any suggestions on keeping energy up is appreciated haha
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