Starting Chemo in November 2017
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Rljes , sound like your are getting neuropathy because of your fingertips are sore and tingling, if hi feel sharp pains, you can tell your MO they have prescription for the pains.
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rljes- sorry you are feeling so bad this time around. I was told to be careful from day 7-14 due to our white counts dropping so low, we are at risk to pick up infections. The nadir number is when you drop, that’s why most had a set of labs drawn at 1 week post first infusion to see what their numbers were. Mine wasn’t drawn until day 12 due to my MO being on vacation and on day 12 my wbc’s were 2.2 which is pretty low but it was already on its way up so idk how low it got. I can feel when it starts dropping, I start getting achy and it gets worse until it comes back up. I wear a mask at work on those days and I sanitize constantly. If I go in public, I keep a 3 ft distance from people (droplets only got 3ft from people coughing), and sanitize every time I touch something I know a lot of people have touched. Shopping carts, escalators, money...before I eat or even put my hands near my face for anything I wash them. You can protect yourself without being in a bubble. I have the same regimen as you, just without the neulasta. You’re probably getting a little cabin fever going on if you’re staying cooped up all the time. I was told to get out and walk a little everyday, and that helped a lot. Being back at work has been a tremendous help so that I’m not sitting at home wallowing. Hope you start feeling better soon, hopefully it is just from chemo and you haven’t caught a bug. I don’t know where you are or what the weather is like, but fresh air might help too.
Tina.
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Thanks for the encouraging words Tina,
I'm in the middle of the Midwest polar freeze. This morning it was: -14 windchill. Just too cold to go outside safely with all the ice and snow. Plus I live in a 'little house'. (500 sq). Maybe if I get some energy I can dance it out - I'll figure out something before I go stir crazy. I'm usually pretty self contained, but for some reason, I'm really restless, no energy and no motivation. Depression? That would really suck, because I can't take anything for depression. Suppose to get up to 24 degrees tomorrow, then I can get out and go buy Truman new boots. Baby needs new shoes.
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rljes I'm so sorry this has been a tough round for you. It can't be easy to cope with such cold weather and be unable to get outside. I hope that if the weather moderates you can get some fresh air. For me being outside makes such a difference. The natural sunlight even helps me sleep better.
My Dr. told me I could get out a bit more after day 9 but based on what others are saying that sounds a little early. I don't get around crowds much and always carry hand sanitizer. Like Tina, I wash my hands frequently and as soon as I can. I often feel isolated but I remind myself it's temporary. I go for walks, pet my cat, call friends and family, and enjoy a good book. I also watch animal rescue videos on You Tube (I know that sounds a little goofy). The small things help. Dancing sounds like a good idea!
I hope you feel better soon. Hang in there.
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Rljes - I was never told to stay away from crowds on days 7-14. I do remember being told to try to avoid kids and to wash your hands all the time. Sure enough I ventured out today and kids were everywhere in the store. Plus I'm having company this Friday with a young couple who has a 4 year old boy - just hope he doesn't have a cold or anything. Actually he's my daughters friend's little boy and I'm quite anxious to see him. So I may be clobbered with all kinds of germs as kids touch all kinds of things. I don't know how we avoid people anyway, and you have to do errands. I get cabin fever, and besides, my car will die if I don't drive it after sitting unused for days at a time. We do have some bad flus going around here. It's risky all right.
My second round caused me to lose my taste. Nothing tastes good. My first round didn't effect my taste. My nose runs every time I do eat. That's strange. I also had more stomach cramping off and on. I hope our third round doesn't make it worse. I'm going crazy enough, so don't feel alone. You were hit harder this time. Like you say everyone is different, but the change in SE are apparently notunusual.
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hello ladies, I try so hard to be here with you all the time, but really it's difficult to me, we are not young anymore, I mean my eyes not working like before lol. hope all November group will be ok. we can do it.
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rljes, the tips of my fingers get sore on day 7 and 8 for sure, but I don’t consider that neuropathy. Neuropathy is tingling, like my hands and arms are asleep, and maybe the clumsiness I call chemo hands. I drop stuff for several days, and then it gets better.
My doctor said they would tell me if my counts are low and I need to wear a mask or stay in. I work from home for a week and a half after treatment because I feel so bad. I don’t go out a lot during that time especially since flu is bad around here, but I’m not a hermit.
I had forgetten how bad the roof of my mouth feels starting day 7. It feels raw near my teeth. I’ve had a headache most of the day, and felt absolutely terrible going toget my counts checked this morning This is the worst day 8 I’ve experienced in the 3 treatments.
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orangedaisy- funny how you mentioned tips of the fingers. Mine started hurting today, but I type in a touch screen at work all day so I’m assuming I am aggravating it, aches and pains are starting full force today so my numbers are dropping. Took some ibuprofen, get through today and tomorrow at work and then off sat. Hopefully Sunday I will be going back up and feeling better. Everyone have a great day.
Tina.
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Hang in there, ladies! I had a couple days of minor achiness - Advil took care of that - and I only had to take 1 Advil each day.
As for crowds, my onco said I don't have to get crazy with avoiding people. The most important thing is to take precautions and wash my hands "frequently". I haven't avoided the grocery and have gone out for lunches with friends etc. I'm not one who has to be out and about a lot, so that's a plus for me.
Taxol #5 today....will see you all later.
Hope
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Wishing all of you the Happiest New Year Possible ! May our side effects be mild, our lumps responsive to treatment, and our outlooks optimistic Thanks for sharing your experiences on this journey. My personal psychological therapy has included making a few 30 second video animations. On Jan 2 I will be having infusion 2 of 6. This video is about my view of greeting the New Year. Hope you enjoy it . Please comment.
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Oh my - Orangedaisy - 3rd treatment sounds bad. I guess I get to look forward to a new adventure. What I hate most is the fluish feeling. I think I’m getting most of that with the compazine pills. I may try and avoid taking them so much next time, but I do not want to be nauseated.
Hope99 - I’m figuring you are feeling a bit better now. Please hang in there. As time goes on I think we are all stronger with these side effects. It helps to vent them out, that way you don’t feel so alone. They will not kill us - just a necessary evil, but the credit is in the killing of cancer cells.
Tina - you are definitely a warrior working the way you are. I don’t know how you do it!
Nonahope- Sorry you are having aches and pains. I’m going to try Advil next time if my back keeps bothering me. The ibuprofen helped, but I hate taking this stuff on top of everything else.
Emalyn- I think you got that video illustrated right on target. It’s kind of bad we are taking in New Years cocktails as chemo drugs. Well - 2019 - we will be free
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hi everyone, merry Christmas, hope santa , and your families were good. It's a different Christmas. My hubbies family is wonderful just occasionally asking how I am. Just one newbie who would ask me 3-4 times a day, bit much but he was genuinely concerned.
Nonahope, great news about your liver results, ( I hadn't read posts for 6 days). Such a relief for you!
Klvans, my liver enzymes have come down except for Ggt which is not alcohol related. Aside from eating the healthy liver foods, Ive also gone organic, reduced carbs, processed foods, sugars, and oily fried food. It's been easy as I don't tolerate these much anyway. Really only cope with bland foods. But my liver is rejoicing.
Re staying away from people when counts are lower. My neuts only get up to 2.1 even with a neulasta shot. I just have to stay away from people who are sick, like hubby right now with the flu. But don't need to wear a mask. When my neuts were under 0.5, in hospital with febrile neutropenia, I had to stay inside the room and wear a mask. As soon as over 0.5, I didn't have to mask up. But lots of care and hand washing/gel all the time.
I was advised to stay off turmeric as it interfere with chemo and also no live culture eg kambuccha as it can over grow when your immune counts drop.
All the best for chemo rounds ladies.
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I can't remember who said what, but here goes my attempt at responding!
Little video is cute!
Compazine knocked me out - ask you doctor for something else that won't do that. I went through three drugs, landing on reglan, which works better for me, and does not cause drowsiness. I have to work - so I can't spend my time as a zombie.
ANY side effects that are not managed with your meds, or that make you think twice, call your doctor. They have other meds to help and they don't want you to be miserable. Example... my allergies are in overdrive from chemo. I'm getting my second infusion today. Told the nurse my OTC allergy eyedrops aren't cutting it. They called in prescription eyedrop that will take care of the itchy, watery, red eyes. Boom. Done.
Those dog booties are adorable. I may have to look into those for my three monsters.
Just remember - all this is temporary. It's a thing we've gotta do, and we are doing it together. Listen to your body and do what YOU need. Rest if you need it. Get out around people when you need it. If you are worried about germs, wear a mask and wash, wash, wash your hands.
I'm feeling particularly lucky with blood tests. Last Thursday my wbc count was 2.5. Today, 13! That's a little above normal, and I'm NOT getting neulasta. Weird. They are happy with that, so all good.
Feeling like a gypsy fortune teller with these headwraps. Having fun with it!
Yesterday:
Today:
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Meowmmy I love the scarves, I have know idea how to do that! I know it’s probably on YouTube but I’m too lazy to look. You look amazing in the scarves and have such a cheerful look about you all the time! Keep rocking it!
Tina.
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Emalyn, cute video!
Tina sure is the work warrior. I don't know how she does it either.
Nonahope, may taxol #5 go well.
Lizabeth, I have mixed feelings about my treatments; I dread the side affects yet I know each one brings me closer to the end game. I hope #3 went well for you.
Orangedaisy, your latest treatment sounded rough. I hope you are feeling more like yourself now.
Binnebin, Thank you and every one else who gave me diet suggestions re the liver. I cleaned up my diet and my latest test was fine. It was a relief. Funny how a normal blood test makes my day now.
Meowmmy, you sure look stunning in your head gear. You really pull it off. Thank you for the reminder that it's all temporary. I needed to hear that today. Being there for one another, even in an on line community, makes a difference. I appreciate all the feedback and support I've received here.
I am developing tingling in the bottom of my feet. I want to start taking L glutamine. I looked for it at Whole Foods but couldn't find it. Am I spelling it correctly? I will probably order it online. Does anyone know how much to take? My hands are usually cold during treatment and I think I'll make sure my feet are cold now too. I love to hike and fear losing that source of enjoyment.
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I just finished my DD AC treatment and was start taxol today. I had an allergic reaction so no taxol for me. The dr said I would have Abraxane next week..... is anyone having this? How is it and the side effects?
Is this better than the taxatore ( not sure if that is spelt right!)
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Hi everyone- I am newly diagnosed (12/18) and will start my chemo likely next week. The mass is large and in my lymph nodes so I need to start soon. Does not give me a lot of time to prep or do research on what to expect, so I appreciate all of the information here. Still soaking in my diagnosis. I will be on an AC regimen initially- does anyone know if a cold cap would help to prevent hair loss? To me, that is the most scary of all possible side effects.
I also have a weak stomach to begin with so am just hoping I am not vomiting all day for 4 months straight!
Glad to know there is a community out there to ask and answer questions. The unknown is scary.
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Here is Truman with his new Boots on! Thx 1950-1952
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Hi Everybody Chemo #2/ Day #10
Finally, I feel better. What a difference a day makes. I was in a dark place for about 10 days. Whew. Glad that's over. ( Ha- so are you all, I'll bet ) Kidding. I know we can say how we feel in here. Our safe place.Jods520 - Sorry your here - but Welcome. A wealth of information in here. I won't be taking what you are, but there are plenty others who are. One thing I want to say, and most will chime in on this - they (the MO's) have an arsenal of medications where being nauseas is almost a mute point. If one doesn't work, try another. (of course there are side effects to the anti-nausea meds ) Just be sure to communicate with your MO or RN. Just an example : Compazine - It takes away the nausea (besure to take your Rx BEFORE you get sick - don't play catch up) and I have zero SE's with it, but others say it makes them sleepy or tired. Everyone is different. Best of Luck!
I went out and bought Truman boots - (thx 1950-1952) and took a long walk at 4 degrees. Refreshing. Dropped in on a friend (making sure they didn't have a temp
And Blair, you are absolutely right. If I hadn't went out today, my Jeep would have not started with being zero all week.
Yes, klvans, getting some fresh air did the trick. I cannot wait till I get my Den finished. It has both South and West Sun Exposure and French doors to the East. Bright and Sunny, just what the DR ordered.
Great little video Emalyn. I would have to have lessons.
Meow- you look great in bright colors! I was given a long flowy tassel scarf I'll have to wear in springtime - I'll look it up on YouTube.
Orange Daisy - I think after next chemo I will make the effort to go in to get my labs. I have been wondering how everyone knew when their WBC were low or not to go out. You go inbetween treatments to get labwork. I see this now.
Take care all!
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welcome jods520- we have all been exactly where you are......wondering... am I going to be sick, tired in pain. Anything you can think of everyone has worried about. Most of us are through round 2 so far, some further and a few not as far. What I have learned so far is chemo day is a piece of cake, boring and long, but Netflix will travel with some headphones, snacks, lots of water and a nice fluffy blanket to make the day go by comfortably. I don’t think anyone has been throwing up all the time, I haven’t at all yet...today was close but that was my own fault. Depending on your regimen, which is different from mine, the next 3 days aren’t too bad. Taste disappears by day 2. Day 4 is when I started feeling frumpy in round 1 ( tired, digestive issues). Lasted about 2-3 days, then felt achy like the flu was coming on. Ibuprofen kept that under control, by day 10 I was almost myself. Everyone has their own idiosyncrasies with chemo SE’s which we take meds for regularly. Mine is fluid retention, runny nose and watery eyes and heartburn. Others have bone pain, neuropathy, mouth sores etc. there are a few cold capping, I did not. So they can let you know how that is going. Wasn’t worth the effort for possibly not working. Hair has gone for most of us here and we are embracing it with humor!! Good news is, I get an extra 15 min of sleep since I don’t have to do my hair, showers are a breeze, no shaving or plucking chin hairs. It’s all good and 1 more step forward to being cancer free!
Tina
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Meow, meant to ask if there's any particular reason why you aren't getting the Nuelasta shot. It sure wipes me out the first 24 hours afterwards.
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Ahhhh - Truman looks cute and so confident in his booties!
Meow - fabulous as always! Love the white scarf. Will try seeing about Reglan anti nausea pills. Zofran bugs me to taste it and both compazine and lorazepam cause drowsiness.
Kivans - sorry about your tingling. Have you tried icing your feet and hands during treatments? I’ve been doing that, and I probably don’t need to, but I haven’t had the tingling problem. Not sure if that’s why or not, but they say it helps prevent it.
Welcome Avalon7167 - I never heard of Abraxine. I hope someone here has had it to help you out. Good luck with your treatments and hope your side effects are few.
Welcome Jods520 - There are some here that have tried the cold cap. I forget their names, but I think it has helped, but some thinning is still possible. Check the cold cap topic headliners, there might be discussions about it there.
Today I went without anymore ibuprofen for my back. Went to the mall with a friend, and after two hours of standing, my back started to bug me. Ugh! This is Day 7 > 2nd treatment. I have this feeling my back is going to continue to bug me. I’ll get to the bottom of it or else. Otherwise felt normal and was glad to go somewhere and shop. Still have no taste hardly. It’s kept me from wanting to eat high protein foods. Nose runs profusely after I eat- just crazy
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forgot to put this in my earlier post.....
Has anyone else had a allergic reaction to taxol? Did your dr switch you right away to a different drug? And then you had no reaction?
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klvans - you spelled it right L-Glutamine - i got mine at local Walmart.
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Avalon, I had reaction on taxol infusion, my heartbeat went fast so they slow down the infusion from one hour to three hours then I’m fine. In my July group several ladies had this problem, after they slow down the infusion time we are much better, from what I heard Abraxane is a more expensive chemo drug, some of the ladies changed due to skin reaction and they did much better. So you should have less SE.
When you have taxol or taxotere, neuropathy doesn’t mean tingling only, numbness is one major SE. I didn’t have much tingling but all my fingertips got numb so did my feet. If your numbness got so bad, you might lose your balance. Also neuropathy damage might be permanent damage that’s what my MO told me. You can read about neuropathy permanent damage thread in this website. You should communicate with your MO when you feel numbness on your fingertips and feet.
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hi Rljes, the booties look great. I hope they do the trick. If only our own problems could be fixed by 2 pairs of red rubber booties. They are comical though so I guess in a way they do solve some problems. The sound they make on the kitchen floor just cracks us up.
Had the 2nd chemo yesterday. Felt tired after and headachy. For the 2nd time since I’ve been going to treatment an ambulance, fire truck and EMS were there. I don’t even want to know why. During the infusion my hand suddenly got really cold and my arm hurt so the-infusion nurse put a hot pack on my arm and that helped. Today I’m still a little groggy and have some reflux but was able to get out to the market. My WBC was 2.8 10 days after my first treatment and yesterday it was 5.7. I’m going to have blood work on 1/8 and see the oncologist 1/9 and maybe start on a two week schedule. I’m glad I’ve got this Christmas break to rest and not miss work. I go back on 1/2. Hopefully the students don’t come back sick. I don’t have a lot of direct contact but still worry. If we have any big flu issue I can work from home
Happy New Year to all!
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Hi Avalon. Because the tax drugs are plant based, allergic reactions to them are more common. I read the percentage of people who react is fairly high, 30%. One of the reasons they give steroids before and after treatment is to control potential allergic reactions to this class of drugs. They also sometimes slow the drip to watch for and help manage negative reactions. With all the precautions some people still can't tolerate the drugs. I think there's a very good chance you won't react negatively to another drug.
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The doc just didn’t think I’d need neulasta. So far, I don’t. If my wbc hadn’t increased enough from last week, he would have added it. They will monitor my wbc count at each infusion and decide then. I’m glad it went up on it’s own. The neulasta stimulates bone marrow to create blood cells, thus the bone pain many have, which I haven’t had.
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Blair, I'll try icing my feet next time. I keep my hands cold and I haven't had problems with them so I'll try doing the same with the feet.
rljes, Thanks, glad to know I spelled it right!
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Hi Avalon! Welcome to the thread.
taxol (paclitaxel) and taxotere (docetaxel) are i think both plant-based chemotherapy drugs. in general patients get allergic reactions to them that are preempted by benadryl. there are cases where the reaction to them is extreme that the doctors decide tk switch.
when they first gave me paclitaxel, it took about 3-4 hours. they slow the drip down significantly to watch for allergic reactions the first time. which i think is also the protocol for paclitaxel. my succeeding infusions, the drip starts slow and then every ten minutes the nurses come and speed it up a little bit until they reach max of around 230ml per hour. so my second infusion onwards was down to 2 hours for paclitaxel and then they follow it with carboplatin (light sensitive hence covered in light protective bags) which can be administered up to 500ml per hour max.
abraxane is the medicine their protocol usually says is the next chemotherapy drug to give if there is an allergic reaction to the previous two. abraxane is milder and more tolerable they said.
At least in my case, first line of defense is cyclophosphamide and epirubicin (most doctors give adriamycin and gets abbreviated to AC), followed by taxol and depending on your case may or may not be given with carboplatin. then abraxane if there is a reaction to the taxol/taxotere drugs. some doctors give taxol first then AC (or EC).
Hope this helps
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