Chemo starting April 2018
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Dee that was a thoughtful, helpful post. I ended up with Wednesday as my tx days because of a trip I’m taking right before #1 and my MO’s schedule. Now I’m wondering if that will be the worst day if I’m trying to feel good on the weekends. Seems like earlier or later would be better. Who has adjusted their tx day week-to-week? The one time I asked the patient education person she said they don’t like to do that but it’s *possible*
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Good morning from Colorado!
I'm struggling today - dealing with the hair stuff. I didn't expect it to be this much of a blow to me. I have a wig - it looks decent to everyone else, but I think I look ridiculous. I can't stop crying. It's just hair - right? What's wrong with me?
The thing is - it says "I'm sick" like nothing else has. I guess maybe I still haven't dealt with being sick....
Thanks for listening!
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Hi, Frog, thanks--I had no bad reactions, but I've read of others who did have some breathing difficulties. I guess infusion centers try to be very cautious that first day, just in case? I will say it was very boring being there so long. (And we have an hour drive each way, so long day).
Thanks, Ingerp--yeah, I tried to ask if just *once* they could change my day. Nope. I'm sure if I pushed for it, they might, but once they get you in a routine, they seem to like it. I go the same day and time and to the same pod, every time thus far. So, definitely ask.
Linda, I'm so sorry. I think hair loss is a major image issue and also a visible signal to us as well that, "wow, this stuff just got real." It's scary. Mourn your hair. Do whatever you need to do to feel better or cope. Because it IS all about you. Big hug today!
Dee
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Linda - it’s not just hair! You have every right to mourn the loss of something that was a part of you! We all get it. My wig looked great, but it just felt so fake. I cried many many tears over the loss of my long locks. And I always wore my hair in a pony, so every encounter with someone I knew was awkward for me, because they wanted to talk about my great new haircut.
I finished up chemo last December and my hair is growing in very well, although curly in back and strange on top - but it’s hair! It frustrates me and I still miss my long hair, but I no longer cry about it.
So yell, cry, rant - it’s your right sister! But this too shall pass.
Good luck
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Hugs from Ohio Linda. It is ok to cry and please know you can always find support here. There is nothing wrong with you!! It's tough to think losing the hair is not even the disease but the treatment we go through. I hope the days get easier as time goes by. The anticipation of the hair loss was worse for me than actually losing it. I have my moments that's for sure. For me I look at hair loss as one step closer to getting through this journey and moving forward. You hang in there and remember you are not alone.
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Linda - Virtual Hug - I try to give myself permission every so often to just feel sorry for myself. It can be exhausting to try and maintain the optimistic attitude 24/7 so I'll watch a sad movie and just really let the tears flow. It feels therapeutic to me.
I'm at day 14 today and I can tell the shed is starting. This morning I told my husband "It's day 14. Last time you shaved my head on day 18" He said was it really that early in treatment I've tried to forget all of that. Poor guy having to go through this again. I'm not sure the fall out will be as fast with these drugs but I've got the box of red hair color under the sink (I've always want to try red) and I'll color my hair right before the shave just to see how it looks. For me just having something fun helps a little bit.
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Linda - hugs from me, too. I have only worn my wig once so far (to a memorial service) and even though it did give me a chance to feel somewhat normal, I was still super aware of it (and worried that it would come off!). It's hard to be out and about when your head is screaming "I have cancer!" all the time. My kids have gotten used to seeing me bald once in a while and it doesn't seem to bother them, in fact they like touching my head, which makes me feel better. I don't like feeling like I'm hiding from the world, but I kind of am laying low during treatment. I totally get what you mean that hair loss means you can't hide from or deny the fact you have cancer any longer. I like what someone above said about giving yourself permission to grieve and also looking at it as one more step on the journey.
Neuropathy anyone? Glutamine supplement takers? I just started feeling some numbness in my feet and have started taking glutamine as directed by my naturopath. I think I'm also seeing signs of the cuticles being affected
I finished my 3rd (of 4) rounds of CT last Tuesday and had hoped to avoid this side effect since it hadn't happened the first 2 times. 0 -
Good morning fellow warriors,
Linda, hugs to you. The posts above ring so true. I am so super aware of my wig I was having a hard time keeping myself from adjusting it. I have since found a nice cap and I wear that on top. That way I don’t keep fiddling with it and I have a sense of security that my wig will not fly away. My wig looks exactly like my own hair and feels like a rooster sitting on my head.
Someday in the near future I want to be an avid poster in the hair hair thread. I want to ask about hair growth, fuzz and feel happy that all this is finally getting over. I want to fret about hair growth and not about the big D and C and nausea. Until then, hang in there. We will get there
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hello Linda, hi group, we seem to be in various stages of moods, and how we feel....but we are all a day further through this journey. Frog, so glad you are getting past the D. Today has been an amazing day for me, got in a good walk, ate lunch at Chili's with my guy, and feel almost normal. It is the first day i wore my wig out. I think its okay!! Hi even got some sqhair bands to go with it. I have found www.cysterwigs.com a great site. I cut off my hair last night. So not bald yet, but 2 inch hair. Maybe little by little is best. Linda, cry, grieve, and just be you. Sooner or later, I think it gets a bit better.somehow we mentally adjust. I pray so for you too. I have my 2nd treatment a week from tomorrow. I dread it, and look forward to crossing it off the countdown at the same time. I still find water tastes bad somehow, but I don't feel as scared when I go to bed .
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Djt, nice to hear you had a good day. I find myself having more and more periods of "normalcy" which is encouraging. Sometimes it's hours or even all day long. It just gives me hope that bc won't be on my mind all the time. It's funny that you mentioned looking forward to crossing hair loss off the countdown. I felt the same way. Frog, yes we will all move to the hair thread together! A coworker I has a "buzz" cut most of the time. He said Deb, try swimming with a bald head, the water glides over and feels awesome! lol. Didn't really plan on that as a bucket list item but might as well. I can do that next month on vacation where no-one knows me! I hope everyone has a nice evening.
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Hi Y'all,
I'm back from the cruise - feeling great! We had beautiful weather and a good time.
Linda2119, I had my hubby do my buzz cut tonight. Day 17 (or is it 18?) and it was falling out in clumps, so I had no choice. You have every right to mourn what you are going through - I shed a few tears myself tonight. I wore my wig for the first time today and people thought it was a new hairstyle (well...it kinda was, lol). I'm trying to stay positive and remind myself that it was falling out because the chemo is doing it's job. But, now I truly feel like a cancer patient...
My white blood cell count went up to normal levels during the cruise - AFTER horrible Neulasta pain on Day 8 when I thought I was lonnnggg past when it would have kicked in. I know what to watch for this time around. My second AC is tomorrow. The tinnitus is gone, so I bet it'll be back after this round.
I know some of you ladies are having problems with metallic taste, so you're sucking on candy. PLEASE, as a dental hygienist, I'm worried that will give you cavities faster than you can imagine. Dry mouth plus the acids from sugar/candy will do a number on your teeth. Please use sugar-free candy wherever possible and be sure to floss and brush religiously/daily. For every candy you suck on, it takes your mouth 30-40 minutes to get rid of the acids. If you suck on them a lot, you can see how your teeth will be bathed in acid and get cavities quickly. Ask your dentist for a prescription fluoride to combat this and use it every day!
For water flavor, I added several pieces of cut up ginger root after my first round of AC (buy it in your produce section) - helps with nausea and taste and there's no sugar in it. Maybe it will help you, too?
Hugs to you all!
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Thanks for all the support! I made it through the day - wig and all. (And tears and all!)
It still feels weird - I love the rooster comment, Frog - that is exactly it. I just kept telling myself that it looks fine, it looks fine, it look fine!
Truth is - it's a bit bushy. I have very fine hair - the wig looks like my hair in humidity! Oh, well. I need it for work - and I'll get used to wearing it at work. It's just a stop on the journey, right?
I appreciate you all!
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GAWarrior, welcome back! Hope you had an awesome awesome time!!!
Btw, I thought of you when I checked and made sure I had fluoride.
Dee
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Hi ladies. I’m glad to be able to read your thoughts and feelings. Day 14 for me. I’m not seeing any hair loss yet but I’m having dreams about it. Losing my hair was my first thought and big cry after dx. But after I moved from stage 2 to 4 in a week I was over it. Now I’m impatient and pissed that it’s not going yet.
TAste is almost back to normal. Teeth and gums aren’t as sensitive. But I’m having back spasms that while short lived are debilitating. Anyone else experiencing nerve or muscle spasm
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Linda2119, my hair started to thin out on day 22 (30th Apr) my daughter was 21 on May 1st, so I waited until the next day and got it cut and shaved, Linda2119 grieve, cry because cancer is shitty and the hair loss makes it real, well it did for me.
I'm going for my 3rd AC today and although I'm doing ok so far, I just want this chemo over and done with, as I read through the threads and see the SE's some of you ladies are having I want it over for all of you as well. We will all get through this because we are strong and this will pass into the past soon.
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Weeeddie, we are here for you and yes It's shitty we have to go thru this. Be kind to urself, keep the end in sight..hugs
Here's a Web link to an doctors office in new Orleans that my MO recommend. They use fat to rebuild the breast. It's something I've considered . I haven't had a consult with surgeon yet as my it will be part of my next steps during june /july.
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Yay, Dee! I'm glad you've got your fluoride!
Marie68, have you tried icing your hands and feet during chemo treatments? I'm not on T yet (that comes after my AC treatments), but there are notes about icing under the chemo tips pinned post. I'm icing during my A and sucking on ice chips, as well. I had 1 very short-lived mouth sore after my first round, so I'm figuring it was the icing that helped.
FDwithfurkids, I had REALLY bad back spasms on day 8 after my Neulasta shot. I caught me by surprise because I thought I was past the SE for that round. I mean it was "child birth breathing" when they hit. I got Claritin and that helped after about 3 hours. the pain subsided after about a day and a half. Good luck - I hope yours has settled down now, but try Claritin (NOT Claritin D) if it hasn't (and if you got a Neulasta shot).
Thanks for the fat replacement info, urdrago71. Like you, I'm not far enough in treatment to consider surgical options, but I want to be researching between now and then.
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GAWarrior, glad to see you back, that is wonderful you had a great time! Do I understand you right, that even the sugar free hard candies give the teeth an acid bath? Yikes.
FD I had back spasms one morning, that was it. Moving around seemed to cut it, with the claritin.
Enjoy a good if not, great day all.
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Welcome back GAWarrior - I'm so glad you had a good time on your cruise.
Marie68. I've noticed neuropathy but more in my fingers than in my feet. More when I'm tired than any other time. I refuse to ice anything during treatment (let's just say not of fan of the cold and this winter almost did me in). I hadn't heard about the supplement helping but will look into it.
DJT - I'm also feeling almost back to normal. Headache is my only complaint but after initial worry that it was mets to the brain (can't really help where the mind goes) I'm sure it's just my lovely seasonal allergies as spring has finally come to Ontario.
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Hi, all.
The wig is getting better. Yesterday - I kept repeating to myself - it looks fine, it looks fine. Today: "It's the most @#!-ing awesome wig ever!" Can't hurt, right? I didn't cry when I saw my bald head in the mirror this morning either!
Is anyone experiencing nighttime leg/foot cramps? I feel like I wake up every 20 minutes.....
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Linda, good for you! I'm on my 2nd full wig all day wear, so far, so good, but I still have some bio hair under it, so I don't know how different it will be over my bald head. Have you ever watched Taz on YouTube. ? Her wig reviews are fabulous, hints, tips, and encouragement. I have learned so much watching her reviews.
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urdrago71, thanks for the kind words, it's great to have somewhere to vent and nobody judges you, there is no right or wrong when dealing with cancer, were are all brilliant strong women.
I'm 3 down now on AC only 1 more to go 😁Absolutely exhausted after it, my friend who's a nurse said you have to expect to be going each time for treatment with a little energy ,so at the start your at 100% and gradually your % drops over the treatments.
Just a tip. I also have my imaginary energy bucket (I read this in a previous thread and works for me ) that has to get me through the 4 to 5 months so I need to use my energy very wisely.
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Thanks, everyone! I had round #2 of AC yesterday, did well enough to run 2.25 miles afterward. Moving kinda slow this morning, though...
Weeedie - try B12 supplements and B complex for energy -they helped me a lot.
Linda2119, I'm glad you're feeling better about your hair. Yes, I had leg cramps toward the end of my first round -every night and more than once a night.
Djt, the sugar-free candies are much better for your teeth, although I'd still suggest rinsing your mouth with plain water after you finish one, if possible. Someone suggested the xylitol candies/chews from xlear.com. You can also get them on Amazon. They'd be perfect as xylitol has been shown to reduce the bacteria that contribute to cavities when used regularly.
Have a great day, y'all!
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Welcome back GA Warrior. Hope you have an easy week ahead.
Weeedie, what is an energy bucket? It sounds very interesting and something I can use in these times.
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I heard about the concept of an energy bucket for chemo patients decades ago. That you can envision that on any given day you only have so much energy, so you have to decide how you’re going to use it for that day. I also heard about “energy tickets”—that you only get so many a day while in chemo so you have to choose wisely how to use them.
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Yesterday the shed totally intensified to I colored my hair red, a color I've always wanted to try. Hubby will shave my head tonight.
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Duffyzmom. what a beautiful picture! Your experiment with red really looks good on you.
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Linda, hugs to you. I was pretty ok with losing my hair but in the last couple days I’ve gotten really bad acne on my head. So bad that it hurts if I touch it or when I lay down. Has anyone else experienced this? I had switched to baby shampoo cause my nurse said it would be gentler. I don’t even want to look in the mirror now because it’s so bad. I also broke out on my face and chest but not as bad and those don’t hurt like my head.
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Duffyzmom, the red looks great
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duffysmom, adorable. Love it. I'm already wearing a sleep cap to bEd, soft and comforting. I cut my own hair down to a boy cut, and the rest is exiting rapidly. I'm obsessed with YouTube wig reviews, and sqhair bands and Godivasecret wigs. I'm amazed, and excited that one can purchase a very well made, lace front, mono part wig for a decent price!
Good luck tonight, it will be OKAY.
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