August 2015 Chemo Group
Comments
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Gooseberry I think you should alert your oncologist to the blurred vision, it could be a reaction. What say the mods?
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Hello All!
Can someone remind me of the mix ratio of baking soda and salt water - and how often to take it - excited it might take away the metallic taste.
Also, I assume you can get Melatonin at a drug store - or just a natural food store?
Headcovers.com is a great site for accessories! I'm digging the hair you can wear under a baseball cap!
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I picked up Melatonin at Target today - any regular drug store should do. I think it is 1 tsp each of baking soda and salt but I didn't find it helped with metallic taste. Just supposed to keep away mouth sores. I do it 3x a day the week of treatment but then slacked off a bit.
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Carbonated water may help with the metallic taste, as may citrus-flavored water.
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Wow Michelle! You look great any which way!
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Week one went pretty well. Very fatigued days 6-8 and then wow! Monday nigh nausea with vomiting diarrhea. Woke up with fever chills and 103.4 temperature. Dr. Said to go to emergency room Tuesday morning. I'm in an isolation room with IV antibioics for infection. Zero White cells. They gave me granus? Generic Neupoogen think. Up to 800 today. Labored breathing due to fluid buildup around lungs today. Added a medication reduced Iv fluids etc.!I Diabetes makes this even harder since I didn't eat for two days. I plan to be hospitalised for about 5-6 days. Finally feeling a little better today. No one said this would be easy.
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SDCA76: so sorry you are facing such a tough week. Sending good wishes your way for continued improvement.
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SDCA76, that sounds scary. Take it easy!
I love my melatonin. As a PTSD patient I have made the rounds with anti-anxiety meds and Ativan was bad for me--messed with my head and gave me THE worst withdrawl symptoms when I discontinued use. But that was daily, regular use for a few weeks. I have requested I not be given Ativan (Lorazepam) but did not go so far as to list it as an allergy.
My MO doubled my first doses of Herceptin and Perjeta, so today's doses were half of last time. And he lowered my Carbo hoping to help with some SE. I feel much better than I did last time--last time I came home and crashed--for 5-6 days... Mostly I just want to avoid 18 straight days of diarrhea. On a great note, my neutrophils were down to .1 and they rebounded beautifully and were high today--can't remember the number. But my nurse was pleasantly surprised since we didn't do any treatment for it.
My recipe for the mouthwash is 1 tsp salt and 1 tsp baking soda in 1 quart of water--swish for 30 sec. throughout the day and make fresh each day.0 -
On the melatonin subject, just wanted to say that the one I take is a 10mg timed release version, which I think makes a difference because I used to take a 3mg pill and it would knock me out and leave me drowsy the next morning. I think taking the timed release one makes it come into my system just a little at a time and that keeps me asleep. (If I go to sleep within a couple of hours of taking it - which isn't always a successful effort for me.) I have bought it both at regular drug stores and at a vitamin store, and it's also available for sale on Amazon.
Chemo infusion #2 coming up tomorrow morning. I'm nervous. My best friend is going to come and hang out with me, so that should help ease the stress a little bit.
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Yeah, I'm rockin' the 1" pixie these days, too. Somehow it doesn't look as cute as Michelle's. Maybe it's because I'm 50. Haha I look like your "older artsy neighbor" now. I just need flowing clothes in blues, mauve and teal.
Oh, I just ordered some things from the TLC catalogue. Sending it all back. It's pretty poor quality. I think most clothing stores have cuter hats and scarves.
What to take to chemo session: Large cup for ice water so you can keep mouth cool during taxotere or xyz infusion so u don't have to keep asking for refills!!
Mom2ABoy, how much L-glutamine do you take? I was told 10g three times a day for days 1-5 after a treatment, but it seems like so much!
KateB76, the guy next to me last week at chemo swore by MJ Gummy Bears. Hey, if it works..
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lovelifeBR No I don't have TNBC. ER/ PR + & FISH -ve. I'm here cos my Oxcotype is in the high end of the grey zone.
& yeah, I didn't like the stuff from TLC neither, but I already took the tags off & some re clearance items. will be donating them. ACS has stores in town.
Also, I noticed many of you are on Herceptin. Did the Dr explained why you are on it?
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I have to say, though, big earings do look cute with super short hair.
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My first treatment went well. We were there for 6 hours. I had a bit of a sinus reaction to the Cyclophosphamide, so the nurse turned the drip down. They want me to talk to the doctor about it at my pre-chemo check next time to see if he wants me to take Claritin beforehand. So far I feel just fine. Very slight sense of difficulty swallowing while eating dinner, almost like I hadn't chewed my food enough. If that gets even the tiniest bit worse, I'll be calling about it. Slight off taste in my mouth, but minimal enough not to be a problem at all. I have a feeling that will be getting worse, but I remain hopeful that I'll be the exception with that particular SE. I also felt some pins and needles in my hands and forearms, but that went away after I made an effort to move around and get my circulation going.
Michelle88 - You look wonderful! Thanks for sharing your photos.
SDCA76 - I'm so sorry to hear you are in the hospital, but very glad your numbers are coming back up. Thinking of you!
Gooseberry - I can't offer any experience or advice, but I hope that clears up right away.
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Thanks for the kind words. I must say I have never felt the sun and cold on head like I did today!
My brother is a regular user of marijuana, and he brought me some special gummies the other day. They are sitting high up in a cupboard that my kids cannot reach...
- Sdca76: hang in there! Hope you feel even better soon.
- Tam-iam: congrats on the 1st treatment completion! Great that you could eat dinner. Definitely take it easy. I was pretty much horizontal or the following few days after my first AC. I didn't take my optional anti nausea pills soon enough. In hindsight (and per the nurse that called on day 2) I should have taken it as soon as nausea kicked in
- superis: Herceptin is targeted treatment for us HER2+ ladies. It combats the proteins that our cancer cells have that want to make more cancer cells.
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@Sloan15, you are very funny and I so appreciate your sense of humor! I suspect it's going to carry us all through the worst of this.
About the L-Glutamine, I was told to take 8-10g, 3x per day. It does seem like a lot, but the brand I bought is very fine and not gritty, so it mixes well with water, juice, or anything. It's been very easy for me to take as much as the doctor asked me to. I've been mixing it with cranberry/blueberry juice and liquid vitamins, or just plain water. Haven't been brave enough to try it in cashew milk yet but I'm sure I'll get to that at some point. I'd be putting it in smoothies, but my blender's broken! Hubby is picking us up a new one off Craigslist tomorrow, so I'm looking forward to having a smoothie every morning with extra protein along with my L-Glutamine. I have had some trouble keeping my caloric intake up.
Funny thing about this L-Glutamine stuff ... I already had some pre-existing peripheral neuropathy in one foot before I started treatment. I could swear it's actually getting a little better. I know it's just supposed to protect against it, but I thought that was kind of unusual so I thought I'd mention it.
@Tam-iam, congrats on completing your first treatment and getting through it so well. For me the side effects didn't hit until about 3 days after my first treatment. Days 1 and 2 were just fine, Day 3 was lousy, lousy, lousy. So much so that I have already asked my boss if I can trade a weekend day for my Mondays for the next few months (I get my treatments on Fridays, so Monday is the 3-day mark).
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Oh one more thing ... I haven't been too thrilled with the hats I've seen, so I took a quick spin around Etsy. There are at least two vendors I found selling very nice handmade hats. If you want specific shop recommendations send me a direct message, since I don't want to spam the board.
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Here's a list of L-Glutamine containing foods, which I got from the about.com alternative medicine website. It might make sense to just eat lots more of these!
Food Sources of L-Glutamine
Food sources of L-glutamine include:
- barley
- beef
- cabbage
- corn
- cottage cheese
- egg whites
- milk
- peanuts
- pork
- poultry
- raw parsley
- raw spinach
- soy
- yogurt
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Bunny, love the photo!
Michelle, you're rocking the short hair! Very cute!
SDCA, yikes!! Glad you're getting treatment but sorry you have to be in the hospital. Hope you get to go home soon! (((hugs)))
I've never heard of MJ gummy bears & just looked them up...this article is interesting/funny: http://www.thestranger.com/seattle/a-beginners-gui...
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After first tx yesterday, I was down. My liver enzymes were sky high, so they halved my dose of adriamycin. Left with a slight headache, came home, set my alarm to take the zofran when the nurse said too. Woke up to take it and went back to sleep, then up 1 1/2 hours later. Full on headache, didn't want to take anything because of liver enzymes, which could be from the hydrocodone that I have been taking since my surgery. I have been weaning since last week and now that I'm wearing ACE bandage compression, I have been able to almost stop it. So the headache could be a rebound, still have it but not near as last night.
Hope today will be better, I go for my neulasta shot today and mil is taking me. Next tx I will be the test study for the on body injector. From what I understand is the hospital pharmacy have been dragging their feet because they don't think the will get paid by the ins companies which they will and if it is a case they won't, the rep said that Amgen (company that makes it) will pay it all. So next tx I will be getting it and that makes me happy because it's one less trip since it is an hour away.
I think I am sleepy enough again, so hoping to go back to sleep. Will catch up more later.
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I'm just checking in to say hi.
SDCA, I'm so sorry that's happening. I imagine they'll be more proactive next time and give you Neulasta! Hang in there.
We all rock. That is all.
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SDCA, I'm sorry you're in the hospital and I hope you have a smooth recovery. Scary stuff.
I had a follow-up appointment yesterday one week after my first AC tx. My WBC is low, but that was expected even with the Neulasta shot I got last week. I was told not to live in a bubble, but to be scrupulous with the hand sanitizer and avoid sick people. Now I am paranoid.
Unfortunately, they had to cancel my acupuncture session yesterday afternoon because the WBC was too low. Is anyone else trying acupuncture? It's offered through my cancer cancer to help control side effects. So far headache and stiff neck have been the worst for me. Hopefully, I will get to keep next week's appointment.
I am still wearing the pixie cut I got last week. So far my hair is firmly attached to my head. I ordered some sleep hats off of etsy and a couple hats from Amazon that I have been happy with. Last night my sweet friend took my to visit her friend who makes awesome Buff-like wraps. I picked up several last night and she is making more for me out of fabrics I picked out. She has a etsy store, so PM me if you're interested.
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tazbear89 do you also have compazine? I was warned that Zofran can cause headaches, so I was given both to try for nausea. So maybe ask about a different anti nausea medication
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Scarves are on sale at Pier 1 for $10 right now. Lots of colors and fabric weights.
If I can figure out how to post a pic, I'll do a wrap and show you....
Okay, the store clerk caught me taking this pic. Haha!
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Sloan15 I want to hug you for that smile!
You look great
So sorry to read of all the problems in the side effects club. It will end.
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SDCA76 - I hope you feel better soon!
One week after DD AC, I too am in the hospital. My wbc counts are very low and fever is very high. They've got me on IV antibiotics and liquids. They have run test upon test, but they don't know where/what the infection is and may never know. I have no idea when I'll get out. Bad thing is, this may happen with every treatment. I had the neulasta shot after each treatment and, I think, did all the right things. But right now, I'm feeling about as badly as I've ever felt in my life.
I'm going to ask the oncologist next week, but I'm wondering if any of you have heard of taking antibiotics in advance of chemo?
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sio -That sounds so awful! Prayers that they figure out where the infection is and can treat it easily! Keep us posted!
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I had my first Perjeta and Herceptin on Wednesday and my first Taxotere on Thursday. So far my SEs include a nasty taste in my mouth which alters the taste of my foods and toothpaste, my tongue feels like it's burning, I believe I'm retaining a bit of water, and I'm slightly constipated. I also don't have much of an appetite. The steroids are doing a number on my blood sugar, so I'm up to five shots a day. They also are causing me not to be able to sleep well. I did, however, manage to work a full day today, which I was glad about! My Neulasta auto-injector is set to go off at 7:00. We'll see if it works! I started my Claritin last night. Looking forward to a relaxing weekend!
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Hello all,
Just getting on this thread for the first time. Looks like I share the same treatment plan with a number of you (Taxol/Carboplatin every 3 weeks for 6 rounds, followed by radiation, a year of Herceptin infusions and then Tamoxifen for 5-10 years. Good times).
Re: what was the worst day post chemo? I've only had one chemo treatment so far, and in my case, Day 3 was by far the worst. For the first couple of days, I felt surprisingly ok (I was expecting the worst). The treatment session itself was fine...I relaxed in a big, comfy recliner...kind of like a mani/pedi minus the mani/pedi...nurses were very sweet and attentive...the only slightly painful part was accessing the port). It was a long session -- 4.5 hours, but otherwise, no big deal.
For the next couple of days, I was slightly tired and needed to nap, but otherwise, I felt fine and was relatively active. But on Day 3, the side effects hit me -- big time. I went to work that day and was so incredibly fatigued, I had to go home at noon and lie down. I felt like I couldn't function -- couldn't even read or watch tv. Just slept a lot (no amount of sleep seemed to help), stared at the walls, and got very depressed. It was hard (and still is) not knowing what to expect and how long the crappy feeling/fatigue would last. I managed the nausea pretty well with meds...took them regularly and only had a few moments when I was afraid I might throw up (but I didn't). I also had zero appetite and was barely eating at that point. The day after that was slightly better...still tired. But the following day (6 days post-treatment), I was feeling pretty good and went back to work. I worked a full day and have been at work every day since then...feeling remarkably "normal"...just have to conserve my energy (by 4 PM I'm pretty tired). All in all, this has been a huge relief. The only other side effect I have experienced is ongoing mild diarrhea which I am trying to manage with lots of Immodium (TMI?) and a fairly bland diet. I am really afraid to eat a lot of different foods -- some things upset my stomach and my diet is already bland. So that is a concern -- whether I'm going to be dealing with this throughout treatment.
So that was Round 1 -- 5 more to go and it can't be over fast enough for me. I just wonder if this first cycle was typical or not. Has anyone figured that out? Does the first one set the template or does it get worse?
For those of you asking about the port. Yes, I had one of those lovely things implanted right before chemo. The first few days were pretty awful -- it hurt a lot, especially when I tried to get up from lying down. I was afraid the pain would persist. But it has lessened over time. Yes, I still feel it sometimes -- the area is tender -- but it has improved (they say you "don't even feel it" after a while. I wonder about that. It's like having a hard, plastic alien invader in your chest). However, I can't wait to have the damn thing removed -- that's a year away (I try to do "one day at a time", but honestly, I constantly project forward and think "I'm 4 months away from stopping chemo"..."I'm a year away from stopping treatment"..."I'm a year away from having hair again", etc. It just feels like a loooong road ahead that stretches on forever and I'm on a forced march. Normally, time goes very quickly for me...but lately, it feels like slow motion. I've only been dealing with this for TWO MONTHS, but it feels like it's been more like six...so much has happened so quickly.
Speaking of hair loss...that is my current MAJOR fear. I am just on the verge of losing mine and I'm terrified. I went into full Obsessive Compulsive mode trying to prepare...bought THREE (!) wigs (2 cheap ones and one that cost about the price of a small car)...have the baseball cap with hair...caps...attachable bangs...etc etc. The whole arsenal. I don't know how to possibly prepare for this emotionally -- can anyone? It's just looming on the horizon now and I DREAD it. Tomorrow, I'm getting my roots touched up -- how crazy is that? But the white roots are driving me nuts, even if I only have hair for another week (and yes, I know coloring one's hair during treatment is controversial...if anyone has anything to say about that topic, please weigh in). I also keep looking at the almost empty container of hair mousse wondering, "Should I buy more now?? Guess not!"). Really, this hair thing has me almost as upset as the initial diagnosis. Especially since I work full-time and will need to come to work in my wig (haven't gone public with my condition with the entire office). Walking into the office wearing a wig is going to be daunting.
So ladies, that's where I am as of this moment. My mood has been up and down. I feel like I've entered a new phase of this saga. I'm out of the Shock & Fear stage (when I was feeling mostly total disbelief...it was surreal)...I'm done with surgery and finally recuperating from that (lumpectomy with a very painful lymph incision...took a while to heal)...and no longer running to multiple medical appointments every day, so things seem a bit calmer. I call this the "I Just Want to Get this the F%$## Over With!" stage.
Thanks for being here.
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Sloan 15...you look great!
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Italychick, I do have compazine and phergren. May stop the zofran and see if that's it. Headache has still not gone away and I was okayed to take naproxen (aleve). Thanks for that tidbit.
Scda, hoping for a speedy recovery. You to sio.
Still feeling a little yucky, but I think I'm getting a little better.
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