April/May 2012 Chemo hang out
Comments
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Sandik- Hey Twin!! Nothing like waking up from a nap and finding a pile of short hairs on the pillows. Glad I cut my hair short yesterday or else I would have been laying in a nest of hair!!!! Still have hair though but it's going. Not planning on wearing that wig I have. Happy to wear a baseball cap or kniited cap or a Buff. Losing hair is a small price to pay for getting rid of the nasty. Hope your Mom's Day has been a good one!!! Round #2 on Tuesday for me.
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I'm not getting a wig. I ordered a couple beanies from www.chemobeanies.com, and am thinking of ordering a couple more this week. I don't work from home, but I work in an office where I don't have contact with the public. I'm just going to wear my beanies, and I've ordered a couple custom-made hats with ears on them (fox and cat) which most people will probably think are weird but are totally my style.
My hair started coming out in clumps today (day 17), so I took the scissors to it to minimize the shower drain clogging. I don't have clippers, and I can't justify paying someone to shave it for me, when it's all going to be gone by the end of the week. It looks horrible right now, but I will keep a hat or beanie on, so whatevs.
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rgina- I thought I would be a wig at work scarves elsewhere person so bought several scarves and a wig. I hate the discomfort of the wig but luckily I work at home too except a few trips. Turns out I hate the way I look in scarves . I love the jockey style caps. So I am a bald or cap person vs wig scarf person. I did not know how I'd feel until I wore them.
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I got a free wig from the American Cancer Society through the Look Good Feel Good program. I have it but probably won't be wearing it anytime soon. It's just getting too warm here in Texas to sport a wig. My DH buzzed my head with set of electric clippers purchased at Marshall's for $20.00. He clipped it using the 1 inch guide so I now have a boy's short haircut. Bye bye little bob of mine.... hello caps, hats, and Buffs!!! It's all good!!!!
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I love those Buffs! I bought four of them yesterday, including a purple one, of course. As pretty as my wigs are, I'm certainly not wearing them around the house. I'm either going bareheaded or wearing the Buffs. Wore one for a quick trip to the store today, too.
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Had second DD A/C Monday, not too bad ths time, but still have a sore throat...anyone else have that? They gave me an antibiotic just in case but it is still sore, more annoying than anything else.
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Hey cottontail --where did you order that cat ears hat from? I run a cat rescue and that kind of hat would be perfect when I am volunteering at the adoption center at Petsmart!!
With hot Indiana summers I plan on cotton kerchief type scarves and cotton hats. I'll get a wig in case something important like a wedding or something comes up. My thing is that I am strictly a jeans/capris and tshirt kinda gal, so beautiful silk scarves would look silly on me I think! So casual styles are what I am after. I actually really like the ACS selections on their online store. -
Hi Tweetyb! Yes, I too get a little sore throat after both treatments so far. Try rinsing and gargling with a solution of 1 cup warm water mixed with 1/4 tsp each salt and baking soda. It helped both the sore throat and the sores. My MO acted like a little sore throat is a common SE.
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Night before my first tch chemo treatment...amazingly calm for being a wreck since january. Good to hear from the texas horse women. I had a horse till about a year ago and hope to have another someday. Not sure what DH and DS,etc stand for but my D boyfreind works hospital construction and said he is enforcing "infectious control" while im on chemo...this means the dogs outside for 18 weeks! I told him no doctor or anyone on here has mentioned pets, his reply was that you never see animals allowed in hospitals...i really want my dogs wjen im not feeling well.
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Hey JJ,
You are going to do great. Drink tons of water during and everyday after...I mean like 80+ oz a day. I had my 1st TCH treatment on May 3rd. I was pretty freaked about it...very nervous of nausea and I hardly had any. Very few SE's...I wish you the same.
Good luck and report back!
Re: Dogs...YOU NEED YOUR DOGS!!!
Cindy
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Hi Ladies. Hopefully I can be a bit of help to you. I am triple negative with four positive nodes. Diag as Stage 3a. I went through 4 x 4 weekly AC and I have just had my first of 12 x weekly Taxol. AC is doable. I was just so scared at the beginning not knowing how it would affect and whether I could cope with the side effects. I had a port put in under LA and did not have any soreness around the port but had a little bit where the second cut was near the shoulder blade. Was only sore when I laid on that side to sleep. The best thing I found was drink as much water as you can the day before chemo, the day of chemo and the day after. It helps it to go through your body. Also take a stool softener the day before chemo to get you on the right track. Constipation was one of the worse things for me having never suffered with it before. Take all your meds as directed as its easier to control any nausea (hardly had any) than to try and get on top of it once it starts. I had chemo on the Wednesdays and by the Saturday felt tiredness, a bit teary and out of sorts and achey. That lasted for a day or two. I had a little bit of heartburn but not too much. You can go through this and the time between treatments, every three weeks helps the time to go wuickly as well. Just remember to drink lots of water. I carried on with my normal diet because I only wanted to eat what I fancied and didn't really want to introduce a new diet as well as go through everything else. Exercising helps if you can keep it up and also rest when you can to save your strength. I work full time and carried on doing this apart from the days of treatment. If there is anything else I can help you with please let me know. Thinking of you all and sending lots of warm fuzzies. Annie.
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@jjames,
I've got 3 dogs and a cat in my house. Two german shepherds and a boxer sheperd mix that we got right before I started chemo. There's no way Id let hubby put them outside. Hair and all. Haha Now the cat on the otherhand...... -
After feeling really good since first tx last Wednesday, now I have stomach cramping. I hope it doesn't get any worse and I can get through work today. We'll see how it goes.
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Krazycatlady37
I had an allergic reaction from the tape on my port also! My skin peeled off!! They have tried several different tapes on me and they have all caused reactions. I still have the outline of one of the tapes, hopefully it will go away! That was definitely more painful than the port!
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Crazycatlady, I ordered my cat-ear hat from someone on Etsy. Just search for something like "cosplay hat cat" and it will show hundreds of results. From the search page you can go to a person's store to see what else they have (different colors/styles, etc) to offer. I just chose one person whose style of hats I liked, and did custom orders because my head is smaller than average. (If you're not familiar with Etsy, it's a website where people sell handmade or vintage items. You can read feedback before you buy, and a lot of the sellers will do custom work in addition to the things they post for sale. I love that website so much!)
The hats are usually fleece, so may not be great in the hot summers. I'm constantly cold, especially when I'm at work, so they'll be fine for me.
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Jjames - I'd be in trouble if animals were an issue! I have 5 dogs, 2 cats, a guinea pig and a hamster in the house. And that doesn't count the puppy that just went to his furever home. I think you want to be more cautious about rough housing with them so they don't scratch you and maybe have boyfriend double check for ticks etc when they come in. If he's really concerned he could give them an extra bath here or there.
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Any one having neuropathy or tingling numbness in their fingertips? I am on AC+T aka TAC and have a little. It is bothersome on touchpads.
BIG SHOUT OUT FOR MY DOGS WINNIE AND DOT. I am mostly home alone w them. They sense my every mood and stay within a few feet from me at all times. Dot paws people and we've never broken her of it she's impulsive and fast. I fret about my port. She sensed it and has been very careful. -
Stacie- I've read on the boards that some take supplements to help with the neuropathy--- Acetyl L-Carnitine, L-Glutamine, and B6 (? - not sure about that one.) Just a reiminder-- check with your onco before taking these. There is supposedly a clinical trial with the Acetyl L-Glutamine. Neuropathy usually is associated with the Taxane chemos.
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I, too, would freak out if my dogs were banned from the house. They are outside-type dogs and out more than half the time as it is, but when I feel bad, I need them near me. They sense something hasn't been right lately, and they won't get more than a few feet from me. They are very close buddies who have niether school nor work to take them from me.
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mb1024, maybe ask your doc about taking magnesium oxide (you can find it in the vitamin section). It took away my stomach cramps in about 30 mins. Those cramps are extremely painful, I feel for ya!
Regarding allergies to tape - I bring my own hypoallergenic tape with me to every infusion b/c of my history of tape reactions.
Stacey - I take acetyl-L-carnitine. Here is the clinical trial link for it. I took it with me to my doc and got approval. I researched and found out the dosage is 1000 mg, 3 times a day. Also take 50 mg of B6 daily. Make sure your doc knows. Neuropathy sx can be cummulative with each treatment. Most go away in 6 months, but some have permanent damage/symptoms. However know also that ACL can cause some stomach upset and indigestion...I always take mine with food, and I have had to limit taking it to just a few days before, during, and after b/c of my severe reflux. Ideally you are supposed to take it the entire time during your chemo and for a few months post. My stomach can't handle that, though. So far, so good for me on the neuropathy front. A few zings in my hand one night, but they never returned. Knock on wood.
BTW, icing does not prevent neuropathy...it's just to prevent nail loss. The current theory is the neuropathy damage from chemo comes from damage to nerve cells in the spinal cord...but you feel it in your toes and fingers based upon where the nerve cells are located in the cord. So the only way to try to protect those neurons is to take something systemic. Damage with taxanes and platinum based chemos is cummulative - the more treatments, the greater the risk. So if you are getting symptoms, you tell your onc, so they can decide whether your dosage needs adjusted or not based upon how severe your symptoms are.
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Regarding peripheral neuropathy, I was concerned because I had previous drug-induced peripheral neuropathy so I researched it also. I found a scientific 2012 review of preventatives for chemotherapy-induced neuropathy: http://www.njmonline.nl/getpdf.php?id=10000794. I also spoke to my neurologist (who I see for migraines) and she was emphatic to let my MO know if I experience any symptoms, as it can get severe sometimes. Although the clinical trial data is sparse, I figured it was worth trying to prevent/lessen the severity so I chose to use L-glutamine (10 g/day) and Vitamin B-6 (100 mg/day - note this isn't even in the review article) which were okayed by my MO. You and your MO should decide what is best for you. I hope it goes away for anyone experiencing it.
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slak - I did a TON of reading, too, b/c I have mild chronic peripheral neuropathy in my left leg from an old injury to start with. Your risk of getting neuropathy from chemo is higher if you already have a baseline condition. I agree with you, it's a horrible thing to live with, and I certainly don't want mine to get any worse. That's a good article and one of the ones I reviewed.
P.S. I tried the 100 mg dose of B6 (before I started chemo, to test it out), but that dosage was apparently too much for my body weight. I actually developed increased tingling at that dose (which is a possible side effect of taking too much B6). So I had to back down to 50 mg.
I wish minimal SE for all!!!
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Thanks for all the input on neuropathy - I don't start Taxotere until probably July, but because I work on computers all the time (like don't we all, right?) I have been concerned. I'll run this past my MO. I find that they aren't necessarily forthcoming about preventives like this.
About fur buddies - my 2 dogs (one chow mix and one medium-sized mutt) are indoor dogs and are the daughters I never had. No medical person even asked me if I had pets when I started chemo. I think personally that unless you have severe allergies already or something, as long as you are careful, like wash your hands and use Purell regularly, no need to banish your pets. I am speaking as a dog owner who doesn't have to pick up poop, though; if you have to do that yourself or clean a cat box, it'd probably be better to delegate that if you can. But it doesn't seem to be a huge deal from what I've seen. -
LOL...I have delegated the litter box scooping to poor DH...one of the few silver linings of this experience. Ha ha ha. DH has been such a trooper through all of this, so lucky to have him by my side.
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Hi Everybody,I just wanted to check in from the Feb. chemo thread to say I hope you all are dealing relatively well, and that though it seems to take forever, eventually you come to the other side of the chemo slog. I finished up 4 bi-weekly DD of AC followed by the same of Taxol a week ago, and it's hard to comprehend that next Monday is just a Monday...Re: Neuropathy--I used vitamin B6 and had good results--some numbness, but it tended to recede by the time the next treatment rolled around.Re: Nail problems. I had them, but it was actually from the cytoxan. Everything calmed down, nailbed wise, with the Taxol. Just something to keep in mind..Those who are doing a DD taxane regimen, watch out for the bone pain...Drink tons of water, keep walking if you can.Rooting for you all!
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Hey all!
Sorry I haven't been keeping up with all the posts..this thread is really active : )
Cottontail, I think it is worth paying supercuts or whomever the $15 for a buzz cut, because you may not lose all your hair. Like others here, getting my hair shaved made me feel better, and in control of my hair. It's depressing watching it come out in clumps. I had a patch right at my crown that I don't think ever fell out, it'll be a long time before the rest grows in to match. But more importantly, getting someone to shave your head with a razor is really helpful, your scalp just feels better. And a lot of us look good bald, which is nice in the summer heat.
Just had my port removed! My surgeon did it in his office, no big deal, didn't feel a thing except could feel him tugging to take it out. First time he has seen me bald, that was funny, he just stared at me for about 30 seconds, and commented on how different I looked without hair (duh).
B/C I'm a BMX, I'm now free! 6 month follow-ups and 5 years of tamoxifen. No imaging at all, says my surgeon. MO wants pictures in the fall, I think I'll agree with the surgeon and tell her no.
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Velutha- Yay about the port!!!! So glad you dropped by.
FYI- HAIR- If I hadn't cut and buzzed my head at home, I would have gone to Supercuts, best $14.95 I ever spent when i got my bob. I had my husband buzz my sides and back hair with the 1 inch cutting guard Saturday morning after I had made little pony tails and cut those off myself. I cut the top/front to the length I wanted with my trusty scissors before he buzzed me. I have no idea if the rest will fall out but it's a great transitional hair cut for now. He bought the electric hair cutter at Marshall's --- $20.00 and it came with various sizes of cutting guards. The 1 inch was the largest cutting guard in the pack. I know you can also get those cutters in the Men's departments of Marshall's, TJ Maxx and Ross so one doesn't have to pay full price for a kit. I agree with Velutha--- Take control over that hair situation before it does a number on you and controls you.
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Yy for you Velutha!
Hildy, thanks for dropping by. Im almost 1/2 way through my AC. Had my second infusion Wednesday.
Stomach is feeling retty crappy this time around. Not puking. I don't know how to describe it. My biz partner is forcing gatorade on me. blech! haha
My head is patchy on one side, although there is a lot of grey, so it's tough to tell. haha
Hope you are all having minimal SE!
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Velutha, huge congratulations! That's wild that they can take the port out in the doc's office!
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Sandik- Boo on the funky tummy
!!!!!! Need crackers?????..... More drugs for a heartburn or gassy tummy????? Feel better soon!!!!
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