Starting chemo July 2014
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I've just been using Dove soap on the melon.
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pinkninja - I use baby shampoo, then rub witchhazel all over my scalp. Haven't had any trouble so far.
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I just use my regular shampoo which is sulfate free (Enjoy shampoo) and my regular conditioner (pureology) and have been fine so far. I decided I wasn't giving up my regular routine even though I only have some stubbies LOL.
Nancy
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pinkninja: very good news that you don't have MRSA. I developed another round of folliculitis too and my onc put me on antibiotics for 10 days. She also told me to stop the probiotics while I'm taking the antibiotics, that the antibiotics would just be killing whatever the probiotics were putting in my gut.
JenKay: my nails are doing fine too, just some ridges, but growing like weeds
As for what I'm washing my head with, I've been using Neutrogena UltraGentle hydrating cleanser Creamy Formula (comes in 12 oz bottle with a pump on top) to wash my face and have been using that in the shower on my scalp as well.
Went to our local cancer 5k/10K this morning. My best friend from HS walked the 5K with her husband in my honor and I met them at the finish line and visited with them afterwards at the free brunch buffet. Haven't seen her in about 5 years, emotional for both of us.
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pinkninja -- for my scalp, I use the same cleanser that I use on my face -- Aveeno creamy baby wash, and Aveeno daily moisturizer after I wash, too. After my first time in chemo, my skin became so sensitive to almost everything. The Aveeno baby wash and moisturizer are the only things that keep my skin calm and now with the bald head I just use them all over.
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Peeling feet - I cannot believe any of you get out. If I wear sneakers and socks for a bit (BC Support Group meeting, probably walked about 1 block to and from the car, sat in a cool room for 2 hours) the skin on my feet just peels in chunks. The callouses I have are amazing, like my husband's feet and he works on his feet all day. Once a week, me and my lava rock stone have a bath... YIKES. All the dead skin, on the bottoms of my feet, on the top skin, on my ankles. Just rubbing with my hands makes tons come off on the tops and ankles. I read that certain types of chemo drugs release in the palms and feet creating this. It is called hand-foot syndrom or Palmar-Plantar Erythrodysesthesia. Fortunately mine is not as bad as one of our sisters... chemo brain, can't remember which... explanation - http://chemocare.com/chemotherapy/side-effects/ha... more detailed list of chemo drugs - http://www.cancer.net/navigating-cancer-care/side...
Where is Jenliza? Anyone know? Is she still in the hospital. I think I'm going to learn how to pm and pm her.
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thanks for all the info about shampoos. I've been using the Aveeno baby creamy wash too and just got some aloe vera that i'm going to start rubbing on my head.
Do any of you have blurred vision? Mine seems to be getting so much worse to the point that I don't think I can drive. It's more than just blurred vision, it's like my depth perception is off too. I wonder id this is what has been making me nauseous and giving me all the headaches. It's worse when I'm walking or riding in the car.
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pink - Vision - could you be dehydrated? Have you had a hydration infusion lately, chemo brain, can't remember anything. If so, did it get better after that? My vision is VERY wonky after chemo, day 2 - 10. I notice I squint much more, I get ocular migraines, can't do anything distance, so stay in bed and read, and of course run to the bathroom. I'm almost 50, so it is becoming hard to read bottles or see the markings on pills. This has gotten MUCH worse than before chemo. I have noticed this time, round 3, I've had post yucky days 2-10, nausea. I have dropped a child off at a lacrosse game, picked them up from school once and went for blood work and went to a BC support group meeting this week. I just don't drive much anymore. Wonder if I too have something I haven't paid attention to, but is subconsciously making me drive less. I do notice, I concentrate very hard when driving, as I'm worried chemo brain might make me go through a stop sign or something.
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Insomnia - what are we doing??? I'm taking the smallest dosage of Xanex about 10 times a month, normally it helps but not always. The MO said not to take reguarly, as it will stop working. I need to be taking something more regularly. It takes me forever to fall asleep, then I wake up feeling hot or feeling cold and can't go back to sleep. I'm tired all the time, but it takes so long to go to sleep, a nap is an all day event it seems.
Muscle Fatigue - I'm guessing this is the fatigue they talked about pre chemo - OK, who else has legs that are EXHAUSTED. I cannot stand for long periods of time, like in line at the doctors reception area so what 2-3 min. I can, I don't fall down, but I feel like my legs will give out. At the MOs I've noticed I'm propping myself up on the counter. 4 steps and I feel like my calfs are going to cramp, 10 and they feel like rubber. When I move my legs at night on the couch, when watching TV, I feel like I ran a marathon yesterday. That feeling seems to be worse at night.
Solutions please!!!!
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knmtwins,
I'm definitely not dehydrated as I've been drinking tons of my homemade juice, Gatorade and water. When I am, I feel like a total zombie. The vision thing is freaky and it's getting worse.. It used to last for about a week or so after chemo then go away but it's not going away now.
As for the muscle fatigue, I can barely walk up the entire flight of stairs and when I reach the top, my thighs are burning. I'm not sure if it has to do with being anemic or not. My onco told me I would definitely need a blood transfusion before I'm done with chemo cause my numbers continue to drop.
I just told my husband I feel like quitting chemo. I won't because I know it's working but the thought of going thru 3 more stinks. I was supposed to go to a friends housewarming party then church but I'm too exhausted for either.
I think I'm in the big stink, lol.
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I've still been using the same shampoo & conditioner (Satinique from Amway), I only need a drop, and I use a buff-puff to slough off the dead skin. I've notice the same thing with the dead skin on the feet; I found a neat little tool at Big Lots that has a brush & scraper on one end and a pumice and (oh I hate when I lose my words! One of those sandpaper kind of things) on the other, and I use that when I take a bath, which I don't do often because it's so hard to get out even with the bar DH installed for me, just because of my knees. He got me a shower chair which fits nicely in the shower stall, and even sitting to shower is exhausting. I'm still having my nails done, it's gel, French manicure so I can still see my nails. The nail beds of my thumbs are darker than the others, and this time the tips seem to be more brittle, chipping off on probably three of four of them. I'll get them done this next week, last week before round five.
My husband does retail therapy. That's the only way to describe it. This week UPS brought a big box and a smaller one. Wrong house, I thought. Nope, there's his name. I called him. It looks like a microwave, I said. No, he said, it's a pressure oven. It'll cook a 14 pound turkey in 40 minutes. It was an impulse buy. The smaller box is Wolfgang Puck bakeware. It was free with the purchase of the oven. Sheesh.
Well, at least he is roasting a side of beef and we'll have French dip sandwiches for dinner. (It's really just 5 pounds; it'll take an hour.)
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Congrats Mumford- I will be joining you soon!
Has anyone experienced tooth sensitivity?? I receive the neulasta shot the very next day after my chemo session. I start taking Claritin the day of chemo for a total of 8 days (tried the 5 days as recommended and ended up bedridden with horrible knee, thigh and lower back pain). One day after I'm done with Claritin I notice tooth sensitivity. And I mean severe sensitivity. It hurts to drink anything warm or cold, brush my teeth or put any pressure on my teeth. This only last for 2 to 3 days but is very painful.
Has anyone else experienced the tooth sensitivity??? Is it associated with something else other than the scenario I mentioned above?
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I know about the burning legs and breathlessness after the slightest exhertion (extreme exhaustion) - its been happening to me and I believe its from anemia. I have had problems with anemia before and it feels just the same. I know I am anemic now because I have seen my numbers. Does anyone know how low your counts have to drop before they wiil give you a transfusion? Im ready to become a vampire - besides, they're all the rage right now....
As for blurry vision....my eyes are staying so watery, I have to keep a kleenex handy all the time to blot them. Can't see much of anything through the tears.
I am the one with the foot problem - the onco called it significant hand/foot syndrome. My hands are only slightly affected. My feet are still purple from the 3rd infusion and in one area on the right foot its burned from this last (4th) chemo in which the onco reduced the Taxotere but not nearly as bad as they got after the 3rd infusion.
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knmtwins- My legs are EXHAUSTED!! I can not stand for any amount of time over a few minutes. I feel antsy almost as if I'm agitated. What to do??0 -
knmtwins -- for insomnia, I listen to books on tape and take Doxylamine Succinate (Unisom tablets). MO also prescribed me Ativan, but that has some issues (like being addictive), so I've only taken it when I absolutely HAVE to sleep (like before a teaching day) and nothing else works.
I have no advice for muscle fatigue except that I pace myself. After 20 minutes of putting laundry away, I will sit for awhile. I always leave extra early for my classes so that I can walk V-E-R-Y S-L-O-W-L-Y to my classroom buildings and then can sit for 10 minutes before I'm expected to teach/walk around the room.
Hope you got outside today, Mags. It's a little chilly, but it's beautiful out. My city is extra festive on game day; we scootered around campus this morning and admired people's elaborate tailgating tents, decked out with satellite and fancy grills.
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Red - I start Claratin on Sunday and chemo is on Wed., and end on Sat, but I think I might take a few extra days, because I'm scared of all this pain I hear about. Teeth don't hurt but mouth yes. My mo had me make up 1 qt water with 1/4tsp salt and 1/4 tsp baking soda. I rinse every time I pass the kitchen sink or go into the bathroom. I'm at home, so that is quite frequently.
Pink - My blood work is good, so it isn't from low platelets or RBC, those are in the normal range on my weekly labs, the only thing 'out of range' is my RDW and it should be 11.5-14.5 and has been going up from my original of 14.7 to now at 16.5, my CO2 is high going up from 25 to 32.7, and my Glucose, everything from 109 - 145, but who knows what I am eating before those are taken. The MO isn't concerned about any of these, so I don't think it is our blood work. (yes, I'm a data geek, I have this all in a spreadsheet, in case anyone wants to see what my blood work has been) I'm going to start a little google research now.
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pinkninja: I'm having trouble with blurry vision and focusing too, I'm due for my annual eye exam this month and will definitely be waiting until I'm done with chemo, wouldn't trust the results
knmtwins: oh my yes, the legs are GONE, have no thigh strength at all, am grateful we have a one story house, couldn't do stairs. When I stand up from my recliner I need to stand and pause a bit before taking any steps and those first steps are always tentative
Don't have any tooth sensitivity
I'm short of breath too, so far haven't been anemic, next labs are on Wed, will be interesting to see what has happened to hemoglobin and red blood cells.
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pinkninja: I have the blurry vision and focusing issue too. I don't drive unless I absolutely have to since I don't trust my depth perception. My MO indicated that I shouldn't get new glasses during Chemo and wait for an exam until a few months after chemo ends?
Does anyone have a cough and irritated throat that just won't go away. This happened after my 2nd AC infusion. Wondering if it is due to the horrible heartburn I had for over a week and still have some acid reflux.
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Blownaway - did you ice your feet when you did 4? Anyone icing their feet on TCH? If so, for T and C or just one and if one which?
Fatigue - side effect of 3 of the 4 'drugs' I'm on... Taxotere, Carboplatin and Herceptin
Peripheral neuropathies induced by chemotherapy (CIPN) - so tingling, and this muscle fatigue seem to fall under this. The muscle thing is called mylagia
OK - now I see why they say it is cumulative. I thought they were nuts as the D and C are now better managed, they meant the constant dripping of eyes and nose, the fatigue and muscle weakness, the chemo brain. How you guys do this that have to go to work daily, I'm clueless! I'm going to the May page and asking them. I'll keep you posted.
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RedHeeled, I have tooth sensitivity too. Normally I use Biotene toothpaste but when they get bad I have to switch to sensitive toothpaste. They ache terrible for a day or 2 then goes away. So weird how our side effects vary. I'm a beached whale today. At least that's what I feel like. I hope everyone feels better.
Pink, I know what you mean about feeling like quitting. We just have to hang in there! Hugs to all!
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I hear you all about the runny nose and eyes. Half the time I can't see from my drippy eyes.
I keep telling myself 6 1/2 more weeks (3 tx) than no more chemo! He Herceptin for a year seems like it'll be a cakewalk compared to this.
I'm not sure about when they give you an blood transfusion but the onco told me my rbc's keep going down. I know that's part of the fatigue because before my hysterectomy, I had fibroids and endometriosis so bad I would hemorrhage and I had to take double iron. I was able to keep one ovary so no hormones for me.
Hope everyone has a gentle night
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Ladyb - you need to get on an Rx for the heartburn. I'm on Protonix generic I take a 20mg am and a 20mg pm., check to see if it is on your Rx plan. My MO says better than 1 40mg in am, as many times it doesn't seem to last through the night. You might also ask about something extra for the bad days. I have Carafate, not on my Rx plan, so expensive. I asked the pharmacist to only give me 2 days worth, and he did, which naturally greatly reduced the price.
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knmtwins - I'm on your same regimen and my onco has refused to let me ice anything. I'm going to ask again about icing my feet next infusion because they are in such bad shape.
I am one of the daily go to work grind gals. I have a desk job behind a really high cubicle and sometimes I kick back and take a nap. The bosses don't care as long as the work gets done. How anyone can stand up and teach class all day is beyond me - my hat would be off to them but I dont want my bald head to show.....
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Blownaway -- I'm the one who teaches, and I don't actually stand up and teach class all day. I teach two classes, twice a week. Each class is 75 minutes long. When I'm not in class, I'm like you -- sitting! I'm either sitting at home, sitting in the library, or sitting in my office. I do a lot of work online; I correspond with students and colleagues, submit letters of recommendation, look at job applicant files, all over the internet. Also, yes, I also take plenty of naps. I love the law library because it has soft cushy chairs and ottomans to put your feet on. You can find me sleeping there on most Fridays.....
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30 days from tomorrow is my last chemo. I'm meeting with the RO when I go for my Neulasta shot on the 24th of this month, MO wants me to get it done before the end of the year.
My eyes aren't just drippy, they're gunky. My nose drips, most annoying when I'm eating! I hate having to wipe my nose at the dinner table. So unpleasant. We tried a new place for Chinese take out and it was pretty good. I had broccoli beef and it was tasty and enough for lunch tomorrow too. My poor housemates who have to sit through my nose wiping while trying to eat. Fortunately they have strong stomachs. I've developed little sores at the edge of my left nostril, and at the corners of my mouth. Not painful, just annoying.
Hope I can get some sleep tonight. Hope all of you can too.
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Mags: the sore in the corner crease of your mouth actually has a name: perlache. My onc said to use a Qtip and put a dab of over-the-counter strength hydrocortisone on it twice a day, it helped mine
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Confused, confused, confused. My MO said and argued with me no cinnamon and no naproxen. Go to hospital, what do they give me naproxen, even a prescription to go home, what does hospital docs and PCP tell me go on cinnamon, while there my sugars went down 100 pts, still needs 50 more but they all told me to go back on cinnamon. So confused.
I am out, ruling neutropenia fever, no other cause found, still on antibiotics. How did I come out of hospital, three times sicker than I was when I went in, I feel like a Mac truck ran me over and then backed up. I know the doctors have done that to me run my over and then backed up, some like my MO several times. I have blood clots in my arm, they did not tell me what to do about them but still released me, I have more than one, I have three, one where each of the three iv's where, they all infiltrated on me, painful.
NFB finally called back. I put in complaints with HHR, DOH, Joint commission and some kind of insurance commission.
What from here, I don't know, I think I am done, they broke me, I am not going back to group health and I have no other choice till jan to go anywhere else. I have been looking to find answers, what if you quit treatment early? What happens to survival? What happens if you put off rads? Can you put it off for three months? What happens if you put off hormone therapy? I have found no answers?
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Giles, I can only say, stick it out until you absolutely can't deal with it. I quit last time and did not do the radiation treatments (it was not recommended) My cancer recurred within 15 months. One of the first things my new MO said was. "We won't know if it failed because you didn't finish the treatments." This is the first time that I noticed that you said you go to Group Health. They were my health care provider for quite a while when I lived in Seattle. I can understand now why you have all the inter-person problems. I don't think they give bad health care as much as really bad patient care, if that makes sense. They make you feel trapped. I hope there is some resolution through NFB/#4 se's are beginning to set in. It's day 3. Some nausea and stomach discomfort. Vision is gone. I broke my glasses the other day, and there is no possibility of getting new ones right now. I'm trying to do three pair for close, medium, and far. What a pain! Half the time I can't find the ones I took off. Anybody notice it can get difficult to find the right keys on the keyboard? I hope for sleep tonight because I am really tired. My oncology office numbers the nausea pills as 1, 2, & 3. I've taken #s 1 & 2 so far tonight, but #3 is Ativan, which is a totally last resort pill for me. Okay, whine time is done. I don't have it anywhere nearly as bad as most of you.
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I take imovane to sleep, works for me, every night. I wanted to get off but everyone is telling me not now, now we need to get as much sleep as possible. It might be called zopiclone in the states.
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I started chemo July 1st. 12 weekly Taxol then 4 biweekly AC. After chemo is completed, possible radiation. I will follow all of this with a bilateral mastectomy with reconstruction.
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