Starting Chemo in November 2017
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Kivans - I wonder too about that. I’m the only one of us having back pain and I’m normally very physically active with my back, and I’ll be crushed if my back forever bothers me. It probably has to do with these chemo drugs disturbing my bone marrow. I think it would take a good 3-4 weeks after our last treatment to feel normal since that’s the inbetween time of doses. I’m sure the fatique will hang around - especially if we have radiation treatments.
It’s also interesting you said your eyes have been bothering you. Yesterday mine were slightly watering and all my eye make up wore off from rubbing them. I wear contacts, but I may have to wear my glasses today with no make up. My infusion date is the 12th. I had moved it one day later before the holidays so that my friend could go with me. I believe we all started Nov. 30.
I’m going to try an Aleve today for my back. The pain is definitely creeping back again. I found out that two of my friend’s sister, and one’s friend who had breast cancer, suffered back pain with their treatments. So I think it can be a side effect for some people. Thank goodness none of you have this pain in the butt side effect. I’d feel a lot better without it
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Thinking of all you gals and hoping each infusion is better than the previous. I'm only on Taxol and have had very minimal side effects. I agree, taking precautions about going to work -- especially, in a hospital environment is not "wimpy"...it's darn smart on your part. A hospital is the last place you want to be this time of year.
Hope
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Blair...I sure hope the Aleve helps with your back pain!! I can't take Aleve - wish I could. It makes me feel like my head is not attached to my neck...LOL So, I stick with good old Advil or Tylenol....lately Advil because of my liver enzymes.
Hope
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Blair, I also hope the Aleve helps your back pain. I read somewhere that the lower back is where a lot of white blood cells. etc. are produced. When I had my first Nuelasta shot that is where I had my bone pain. I can handle any side effect if I know it's temporary. It's not knowing if it's going to be temporary or permanent that bothers me. I've read that some eye issues don't resolve after treatment and that worries me. Sometimes I guess it comes down to doing the best we can and having faith that the future will be brighter.
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Hi Everyone Day #16/ Chemo #2
Brrrrrr. Its so cold my car Died, and AAA has suspended service for only emergency situations. It was -24 Windchill last night. -11 below reg temp. So I am stuck.
I have cramping, Bloating, and calcium deposits on all my fingers so I have them bandaged and wearing gloves. Very painful.Today they have a rally at the statehouse where they are discussing to pass the Medical Marijuana bill. We are one of the few states that doesn't have it.
Meow - In the hospital and with a smile. Amazing!
Lizabeth- Will add Apple CIder Vinegar concoction to my regiment. I've heard great things about Vinegar.
mkn86 - good advice - Look forward to your treatment instead of dreading it. Next week will be #3 of 6.
Blair - I'm having sever left hip/bone pain. Its something I've never experienced before. Very different than my usual hip pain. I guess I'll have to bite the bullet and go to the Chiro like I suggested for you. - once I get my Jeep started. (I'm sorry your insurance won't pay)
Guess I'll have to order Pizza delivery. Oh Darn.
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Well, rljess, you have me beat on temperatures! It’s a whooping 3 above here and I’m off to infusion #8. Ugh. Is there such a thing as infusion anxiety? I’ll be fine, I know but dangit I really don’t want to go.
Stay warm, ladies! I’ll check in later.
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Frozentoes - remember the 'zapping' of the cancer cells or the Pac Man effect that others refer to when getting chemo. We have to rethink the process. Instead of getting anxious - we should be embracing ..is that too much? I'm trying. Mine is in 6 days and counting. When I lived in MSP for a year - not much snow, but the temp got down to -34 degrees with Windchill -60 below. We couldn't keep going out and starting our cars - eventually the city came to a grinding halt. (1994)
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I'm in the 3rd day in my chemo treatments, round 2, the constipation kills me every second, it's difficult to live like these 3 days. I already took Senna and Normacole med to avoid it, but nothing happend. just colic and colic all the time. nothing change in my tumour
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rljes, stay warm and enjoy that pizza! I hope your hip pain improves. I'm going to try the apple cider concoction as well. It sounds interesting.
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Goodnight Folks how is everyone doing. Hanging in there right. Well Cycle 2 Chemo I think was a bit tougher than cycle 1. I felt sick for days 3, 4 and 5. Can't tolerate water it tastes so awful. I was drinking gatorade but that too has started to taste bad. The only palatable thing is anything with milk in it. Tomorrow is day 6 hope I feel better right now i am feeling like i'm not getting enough energy...any tips to get the energy up will be appreciated. I finally caved and got some xantax to sleep. Sleep had been eluding me 😨 Anybody done Cycle 3 yet how was the experience? Did anybody get the SE of their tongue going black? If yes how was that experience.
Take care everyone. Warm hugs all around from the Caribbean with lots of love.
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Hi Hope99
I went back and forth between diarrhea and constipation - I would rather have diarrhea, so I take Maralax every other day, plus fiber pills and stool softeners. I think after almost 6 weeks I have the routine down now. I just make sure I don't have to be anywhere 2 days after I take the Maralax. Its very Strong. Hope99 you just need to find something that works for you. They (your MO) can prescribe a strong Rx laxative. Its a balancing act. take care
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Good morning all!
Hope99 - yes as Rljes said, the digestive system is a balancing act - try some different products. Hope you straighten out. You are in the worst time right now, but it will get better each day.
Dark13 - even though on different drugs, I too noticed I was hit earlier with round two and I had a lot more stomach cramps, and loss of taste. Nothing sounded good to eat, so my appetite was gone. My taste buds were so off that it was hard to even force myself to eat or drink. I seemed so out of it that whole week, but the “flu days” were just day 3 and 4. Then I just felt super tired and was a couch potato with some stomach unbalance, but nothing terribly bad. My mind could think of nothing but - nooooooo, I don’t want to do this again! (We all battle this part). You just keep telling yourself - I can do this or else. We don’t want the “or else”. The cancer cells have to be killed!
Nonahope - I took the Aleve yesterday and last night. My back felt better to a point I could move normally. I just don’t know how long I should be using this stuff if I’m only suppose to be on any pain relief for no more than 5 days. I did let several days go by since taking the ibuprofen, so I hope I’m doing it right. None of this stuff seems to bother my stomach as far as I can tell.
Frozentoes and Rljes - you’re making this FL woman feel even colder with your freezingtemperatures. I can’t stand 34 degrees, but we are lucky compared to so many up north. My heating pad stays glued to my lap. Hope you all are able to get out - not snowed in or trapped by nasty wind, snow or ice. Looks like east coast got a whopper. My nephew lives in Maryland. Will have to check how they faired.
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hi! I hope you don’t mind i’m reposting what i told the ladies at the sept. thread
but the important thing is i’m stable now and that infusion 9 was completed (mostly) I promise to read the older posts and reply to them as soon as I am able. keep going! we can do this!
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hi everyone just checking in!
Guess who had a reaction to carboplatin today! ..... me. 🙋🏻♀️my brother walked into my space in the infusion room (patients are separated from other patients woth curtians) and was shocked to see swelling in JUST my sinus area. i had a big red stripe on my skin only on my tzone and my lips and nose were swollen.
Nurses were there to handle it and another doctor. which is a good thing. we were all calm and when the other nurses asked my attending nurse what happened i just said "i tried to put rouge/blush on my face... it didn't come with instructions" 🤪
anyway they stopped carboplatin the second they saw it, monitored my blood pressure, and gave allergy meds and also waited until the swelling subsided before releasing me. And i have to take claritin until saturday. and avoid allergens until saturday. and also a follow up with my doctor tomorrow if symptoms persist.
My doctor also said get an xray because the past two weeks, they were not able to get my carboplatin infusion to top speed (490-500mL per hour) and were giving me carboplatin at 400mL per hour during infusion 7 and 8. So they want to check my port if it's twisting inside or something. I'll know more about the next steps (reduce dosage, slow down infusion, or remove carboplatin) once i see my oncologist.:)
I'd post photos but i think my brother callingb me rudolph for 20 mins was enough 🙃
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Mkn86- so sorry you had a reaction to carboplatin. Funny on your reply about putting rouge on your nose. Good thing a doctor was there to check you out. Was your port ok? Keep us posted and hope they get It completely figured out. A lot of us are in our feel better days. It is cold in the states - in the east and north. My car battery went dead this morning justfrom the cold. I then discovered my water heater cracked a leak - so that’s my headache tomorrow to have replaced.
My scalp is still itching. Thought the coconut oil was helping, but not sure now. Could be the cold weather is aggravating the dryness. I coat it pretty well before bed, wash it off in morning, and lightly dab it with the oil, but don’t need a greasy scalp under wigs or scarves. Maybe I’ll try some anti itch lotion on it.
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Dark13, my tongue had two black strips during chemo, it disappeared afte 6 weeks post.
Blair, did you try to put some lemon in your water? Also I used to put Nuun in my water it helps. Eat with plastic fork so you won’t have the metal taste.
I hope this help you, don’t give up, you gals can do it!! Sleep is very important try to get more sleep.
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Good morning...
mkn...Allergic reactions must have been in the air yesterday. There was an elderly gentleman sitting nearby me in the chemo room. All of a sudden, he motioned for the nurse and said his ears and head felt hot. Well, I glanced over and his bald head, ears, cheeks and nose were red as a beet! I don't know what his cocktail was, but they were saying they would have to cut down the speed, but it was important to get up to the max for best results. Apparently, they had been increasing it each time, but this one gave him a reaction. He was fine shortly thereafter being checked by the doctor. They stopped the drip, gave him something and waited for awhile before starting the drip again, but told him he would be there longer since they had to slow down the drip. I felt so badly for him. Sure sounds exactly like your reaction.
Blair...And, you have other annoying issues....car battery, and water heater. It's always something! Living alone, those are the kind of things that really stress me out.
And, yes...eating with plastic utensils will help with the bad taste....I remember it well.I had round 6 of Taxol yesterday....all went well, except the nurse jabbed that needle in my port so fast and when she was putting in the heparin to flush it, the needle popped out of the port and WOW...the burning was intense. It was all ok when I told her and she fixed it. It was nothing to worry about. I really like her, but she is not as gentle as any of the other nurses I've had...I always sigh (to myself) when I see she's the one who will be taking care of me. She's been there 20 years so, she's not a newbie by any means. She really hustles in that chemo room.
Have a great day!
Hope
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I had my treatment this week with Abraxane and not taxol as I had an allergic reaction last week. So far so good!
Is there anyone else here that is having Abraxane?? Just wondering how the side effects actually are compared to taxol
Does anyone ice their hands or feet before or during treatment? Does that actually help with preventing nail changes or neuropathy
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morning from snowy nj!
I have been on several chemos but recently went to a pill, fun for sure, after loosing my hair to taxal it isi now returning, nails are finally getting better hoping this is positive for the roest, stage 4 is rough
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Hi Everyone - Day 18/Chemo #2
I am so tired I can't get out of bed. Then by the time I muster enough energy to get AAA out here - go out in the cold and assist,have them tow my dead jeep to my mechanic - it will be time for Round #3 of Chemo, so I don't know what I'll do for food and supplies. Sucks living alone sometimes. No uber in my area. already checked.
Avalon, I ice my hands and chew on ice when I take Taxatere. My fingers are full of calcium deposits (painful depositis that feel like splinters) but that has more to do with my Auto-Immune Disease, but I blame Chemo for making it flare up. I also have Raynaulds, so I ice until the Raynaulds kick in. Last time I asked for Popcycles - (I saw that on Grey's Anatomy) and they brought out sludge pops - the really cheap ones you give little kids. Then I saw the RN's eating the "Nice expensive ones" that looked like dove bars. Huh!
Just staying in bed the last 3 days. Poor Truman. He's getting so restless. Can't let him out without watching over him Coyote sighting and I don't think he has enough sense to get out of the cold -17 Windchild. He needs a friend. Watching Reruns of Gilmour Girls and ER. Reading "Wonder" Hard to concentrate tho.
This Round #2 Really sucks. Nothing outlandish - Just Tired, cramping, and BLAH.
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Final Chemo is looming! January 8th at 9:40am I am going in for the last infusion (I hope forever!) and then I will be on to radiation. The depression leading up to this has been significant... and it doesn't help that the weather has been gloomy and rainy. Trying to find many bright sides to it all! I can't wait to be done!
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Aymerz - I know exactly how you feel. I think I'm depressed. I have my 3rd out of 6 on Tuesday the 9th. Congrats on your last infusion. I doubt if I will be having radiation. At least its been sunny here, below zero. Each nite its been between -15 & -27 below zero windchill for the last 2 weeks, with about 4" snow on the ground. at least its pretty.
What chemo are you taking?
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I wish I didn't have to do rads. It's every day for 6 weeks, and from what I hear, my skin will never look the same again. Cancer has taken so much from me... and given me so much. Such a double edged sword. I get really depressed right before every infusion - just knowing that I have to give up feeling normal again. I'm so glad this is the last one. I had to do 4 rounds of TC, and I have be incredibly lucky to have low side effects. I have been able to keep up with life for the most part.. but I'm definitely tired of the burnt mouth, bloody noses and general feeling like crap. It's almost done.
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Aymer I will be right behind you on the 11th with round 3. I envy you being on to the last one. I didn't realize radiation permanently changed the skin. That's not good news. At least there is a month between final chemo and radiation. I wish I didn't need radiation. I'm going to request that my breast not be tattooed.
I'm enjoying feeling pretty normal and don't want to give that up. I feel for those in the cold states and not feeling well. Rljes I hope your car gets fixed soon. It's understandable that you would feel discouraged. Getting it fixed will be a hassle but I bet you feel better once it's done. Hang in there.
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Klvans: yeah, I have heard that it can change your skin. Essentially you are going in for a severe sunburn every day... so the skin gets harder and the texture changes. Not for everyone, but that's what I've heard. I didn't hear anything about a tattoo though... why would they tattoo you? I wish I didn't need it either.
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Hi rljes, today I went to to ER to find a solution to my problem, they make x-ray to my stomach and urine test. at the end, they give me fleet to kick it all! I feel pain now .
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rljes and klvans we are right in a row on # 3, mine is on the 10th. Not looking forward to it starting all over again. I saw my schedule at work for the following week and I’m scheduled for 55 hours that week, Idk how I’m going to manage that at all. I know what to expect and I stocked up on meds I was getting low on to be ready for it.
I feel so bad for everyone locked in where it is so cold right now. It’s cold here but nothing compared to what the rest of you are dealing with, the cold is so isolating. I’ve been here for 5 years now but I still remember the depression every winter living in Illinois. I dreaded it every year.
Finally went out and bought a wig today, I wasn’t going to bother because they are so expensive, but I have a few invites where I need to dress up and I want to look respectable so I broke down and bought the wig. My daughter laughed and said I looked like an old lady 👵. Not good for ones self esteem, but it is what it is.
Tina.
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Aymerz, tattooing is standard procedure in many places. It's used to give easy to follow and accurate parameters to the rad techs. It is subtle tattoo, but if they're going to do it I'd at least want to see pictures. I have a lot to learn about radiation, the next phase, sigh. I met with the radiologist when I started chemo and I think I will be getting a 4 week course. I want to research more and talk to him again when I have a more specific list of questions.
Mom, 55 hours is a lot. Let us know how it goes. Smart to stock up on what you need. I don't have a wig yet. I'm trying to get used to the idea of one, but not quite there yet. I bet you look just fine! Enjoy your social events.
I also feel lucky to have milder weather right now. I hope the east warms soon.
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Wow. I had no idea that they did a tattoo for that - I would ask not to have one too. No thank you. I definitely do not want the first tattoo on my body to be that horrible reminder.
I have lots to learn about rads still, too. I go in for another 'find out more' appointment on the 17th of Jan.
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Rljes - 9th, Tina 10th, Kivans 11th, Me on 12th. All third rounds. I’m dreading it too as well as radiation probably by March.
Rljes- sorry you’re suffering so much. The weather definitely doesn’t help. My car battery died yesterday because of the cold weather. At least I could drive it to the repair shop. Right now plumber is reinstalling a new water heater. These things drive me nuts to have to fix - especially on top of medical bills, but these two things were known to me that they would die at any time. Such is life. I’m wondering what number three is in the thought that bad happens in threes. I’m single too which adds to our headaches
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Blair, we will all be dreading/suffering together. May it go well for all of us. I'm enjoying my "normal" time as much as possible.
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