Anyone starting chemo August 2016?
Comments
-
HI all out of commission yesterday, I'll explain in a minute.
Welcome CatSpot, but so sorry you have to be here with us.
Hope, You look so beautiful with the buzzed head! I know this sounds stupid, but you really do have a beautifully shaped head! But I agree, your wig looks just like your other hair.
Kelly, you're so lucky to have a husband to cook. Mine is awesome and he USED to cook, especially when I went back to work, but it seems that unless it's barbecuing, he's lost now in the kitchen!
So yesterday I felt awesome when I got up, I had some watermelon, coffee and then switched to ice water. I went in, got cleaned up, put on makeup and a pretty scarf. Then all hell broke lose, literally! I hadn't taken anything for constipation since Tuesday night and things seems back to normal. All of a sudden I started with diaharrea and broke out in a cold sweat and everything started getting black. I got out of the bathroom and called my husband for help. Luckily (or unluckily for my DS) my sone was at the house and came in. I had sat on stool by my sink and started passing out. My DS held me up and I kept passing in and out of consciousness while my DH called 911. The totally upsetting (I know I'm ridiculous) part was that I had no control whatsoever over the D and just sat as it kept coming. Paramedics and firemen came, and while they were so nice, I was totally embarrassed! My son kept holding me up until they got there as he knew I'd fall. Was in and out about 3-4 times, and then come around enough to change clothes and get put on a gurney. Then spent the next 7 hrs in the emergency. My WBC wasn't bad, around 4.0 but blood work showed some reaction to undisclosed infection, but ultimately contacted my MO and it seems it's all related to the chemo drugs. They poked my poor arm and hand 6 times and I'm a mess with lumps and bruising now. Glad I have a couple of weeks to recover before another round of chemo. MY DIL and DS have definitely earned a BIG place in heaven after yesterday. As a mom, we never want our kids, especially our sons, to have to see us like that! My DD came up to the hospital, and I had to laugh. She is a total germophobe and she hated even breathing in the ER! LOL. There was a very sad homeless man in the bed across from me, someone two beds down had to have his stomach pumped, there were moans and groans coming from all directions. The ER dr said we weren't to let anyone come near me without washing hands right outside my cubicle. I had a mask on the whole time, but when the nurse came for another blood draw, my DH wouldn't let her even open the curtain until he watched her wash hands, THEN put on gloves. The doc said their goal was to get me out as quickly as possible!
Oh, the indignities of cancer! Don't want to scare anyone, but just hope hearing our experiences help someone ward off a couple of these fun times! I feel good today, an am hungry! So much for fun Labor Day weekend! At least I ensured the medical field had a little labor to celebrate!
Hope all are doing OK. Missed you all yesterday! Dara
0 -
Dara! What a story, one I do not want to repeat myself! How far out from your 3rd treatment are you? So scary, but so glad someone was there. I hate the "non dignity" health stuff! Take it easy today....so glad you're ok.
0 -
Oh, Dara, I am so sorry. I had an episode like that with pancreatitis. So sick from both ends, could not figure out where it was all coming from! I know how you must have felt for your son to witness that, but glad he was there to help. Bet you feel hungry after all that. Hope it's your last setback. You are so close to done
0 -
I am glad to see everyone has come through a bit dented but in good shape.
Dara -- Give that boy a big hug from me. Love and caring like that is so wonderful and I am so pleased you are the recipient.
I am in the hospital. Had another chill and spiked a fever of 38.7C. Went to emerge at the hospital connected to my cancer centre. I was admitted right away and it was found I was DX with neutropenia. That is when there are not enough neutrophil cells. Mine was down to .6. So I have been receiving antibiotics. If the count goes up enough and I have no fever for 24 hours I'll be sprung
0 -
Dara, I'm so sorry for that awful experience! I hope you are better now and past it. I'm so glad someone was with you.
Elizabeth, I hope you are able to go home soon? What is neutropenia exactly? My neutrophils were also very low (I can't find my last lab sheet yet to see exactly what.). But no fever. Also had very low wbc and elevated liver counts, but today I actually feel pretty good. Scary how it can come out of nowhere. Hoping my neulasta has finally kicked in. I'm on precautionary antibiotics until my next labs...
0 -
Hello everyone. Havent posted for a while but have been reading everyone stories. Dara sorry you found yourself in that situation. Glad your home. Did they tell you what caused the infection? I thought nuelesta shot was supposed to guard against this stuff. Also ElizabethAM sorry your in the hospital are you getting nuelesta? Maybe someone could educate me on this? I hope your all feeling better soon.
0 -
Thank you for the good wishes, all.
Since I am in Canada, the names of the drugs are probably different. On day two of my chemo cycle, I start giving myself Filgrastim (nupergen) shotsfor 7 days.
http://www.bccancer.bc.ca/drug-database-site/Drug%...
It is a growth hormone to help simulate the bone marrow to make neutrophils. Neutropina is a dangerously low count of neutrophils
http://www.breastcancer.org/symptoms/testing/types...
This link talks about blood cell counts
0 -
Elizabeth, so sorry you got stuck in the hospital. At least if you're admitted, hopefully exposure isn't quite as bad as all the exposure in an ER. That was scarier than what was going on in my own body! I am amazed at how low your neutrophil is. I checked my labs before infusion on Monday and mine were actually high -- 18.7. My blood problem yesterday was with lactic acidosis. It can be a symptom of an infection, but also can just be caused by the chemo drugs which is what I expect, and then was exacerbated by dehydration with the diarrhea.
Karey, the neulasta is working great. My WBC is doing fine, even yesterday it was in the low normal range. Unfortunately, sometimes there are some other reactions to the drugs and that is what happened. I've read up on the lactic acidosis. It happens when people exercise strenuously and the muscles are deprived of oxygen. I've now watched some videos about using foam rollers to help break down the lactic acid and hopefully avoid the elevated numbers. Then I think I'll ask about something to avoid the intestinal issues next time, although it hit so very fast, I wouldn't have know to take something. It's crazy trying to walk the line between nausea, constipation, and diarrhea. So many people have an easy time, it's important to remember that we all react differently and just be on the lookout should something poke it's ugly head!
Anyone doing great barbecues or fun dinners this weekend? I figure I can live vicariously through you! Although my DIL makes the most phenomenously great split pea soup and she's bringing some over this afternoon. It sounds delicious!
0 -
Hi ladies! Wow! This thread keeps moving right along! I checked in a few days ago and I'm already 3 or 4 pages behind!
I've had some set backs with my mom this past week. We've decided it's best to get her into a nursing facility ASAP. She's gotten so weak over the past few weeks that my DH has had to pick her up from her falls. I took her to her dermatologist this past Friday and we found out she has shingles and it's highly contagious! They don't tell you that in the commercials! That's the last thing I need! She expects me to wait on her hand and foot and that's not going to happen at this point in my life. I need to focus on me and let more qualified people focus on her. I've got aides and nurses coming in 3 or 4 days a week but mom needs care 24/7 right now.
I've been put on another Med to help fight off the shingles virus. That's all I need another med! I don't think mom has a clue about what will happen to me if I get that crap. A trip to the hospital is not in my plans.
Any how, I'm doing a lot of reading and trying to catch up, just so much happening here with everyone for me to respond individually. I'm hoping to get mom settled into a nursing facility this week, then maybe I can read and respond to everyone.
I'm keeping each and everyone of you in my thoughts and prayers every day!
Miss you all!
Lori
0 -
I thought that by day 7 of the first infusion, one was in the clear. Nothing terrible, just a little surprising. I didn't take my Claritin or Tylenol last night (on body Nueslata Tuesday night) and regret it today. My hips feel like I am pregnant again. I have this weird tightness around my chest. I can breathe deeply, and my pulse is fine. Just feel restricted in a painless way. My taste is gone. Water and bread tastes like dirt. Sweet things like yogurt, juice, and Gatorade are still okay. Had constipation early - didn't 'move' until day 4, then 1 daily episode of big 'D'. Today I had 2. (yes, I took OTC softener/anti-D as appropriate). Nothing bad, just annoying. Tired. Took a 2 hour nap and could use another one despite sleeping 10 hours a night. Benedryl and Melatonin are wonders for sleeping through the night. I consider myself lucky that this all I have to complain about, considering several of you have faced hospitalizations already. I'll just keep sipping Gatorade (aim for gallon of fluids a day - feel short yesterday with 6 pints) and wait for the blood check on Thursday. Thanks for listening.
0 -
jandjmom Hi You and I have the same chemo regimen, its different than most on this thread. I am 9 days past 2nd infusion this time my taste buds really went. Only sweet things tasted good too. Its getting a little better today. I found out days 3 thru 7 are the worst and dont feel normal again until day 8. Actually days 1 and 2 aren't bad. Ive had bad diarrhea both times but immodium seems to help. The nuelesta shot got better the 2nd time i read the first 1 was the worst.
0 -
I'm sorry to hear that you're struggling, Candy, but am glad that no bones were broken.
0 -
Lori, so sorry about your mom. I didm' realize that shingles is contagious and my husband had them last fall. He had them on his forehead and down over one eye, was sick for about 2 weeks, and luckily had no long lasting effects. Our immune system is so compromised though, it would be terrifying to have something like that. And you have such a hard time with anti-virals don't you? Be careful!
0 -
Dara....so sorry about your terrible reaction. That is not how you want to spend the day. My son wound up in ER and I definitely stayed clear of that place.
Elizabeth ... Your weekend is not any better. Hope you get home soon.
WenchLori....no not shingles. Yes you must take care of you now. So sorry.
I am dealing with my step-dad dumping my mom here in California. They have a summer home in Montana but he decided I need her help ... Which is absurd since she had open heart surgery in April and hasn't recovered completely from that...so now I have to worry about her and how she us doing back here in town.
If someone does have a fun BBQ keep us posted so we can enjoy it via messaging. ..lol
Love & hugs
0 -
I know the feeling of the hair, had to shave mine yesterday. This so far has been so hard, I used to be able to pretend the cancer wasn't real on the days I was feeling good. Now with no hair its a constant reminder, trying to look on the bright side as my supportive family keeps saying its one step closer to be cured:)
0 -
I feel like we're all falling apart! Everyone has so much going on....I totally get the parent thing too....just took care of my mom for the last few years until she passed at the end of April.
I just got back from a BBQ with our good family friends. Was nice, fun to hang out- but I still felt like the "sick one" for lack of a better term. My hair is still in for now, but it's whacked off. Everyone was fine, so I know it's probably more me- but I thought on the way home...are they saying I looked tired, sick, blah blah. I guess I need to get over it, and like what tishabe just said about looking at it as one step closer.
Karey59 & Janjmom- I think I'm on the same regimen as both of you.
0 -
Tishabe--I hear you there! I felt good before, I went through surgery and was feeling great 3 days later and I feel great now. Why do they have to make us feel so awful and put us through so much to make us get better?! This hair thing is about to get the best of me though! My husband shaved his head in support of me almost a month ago. I didn't mind but the other day I realized that I can avoid looking at myself in the mirror if I have to, but seeing him with a bald head is a constant reminder to me that I soon will have none. I told him he needed to grow it back out and the way his grows, he'll have a full head of hair in 2 weeks. This is so depressing and the hardest time I have ever had in my life! I heard there are a very small number of people who don't lose their hair with chemo. To be so lucky to be one of them! I'm glad I am not alone in these feelings I am having about this. What regimin are you getting?
0 -
Hate to be the bearer of bad news, but, unfortunately, everyone loses hair with A/C. Only hope is cold caps. I have all my hair after 3 infusions of A/C by using cold caps. Starts coming back on Taxol
0 -
so nauseous, add to it that I woke up from a nap and the pet sitting pug had peed on the bathroom tile, and had diarrhea on the area rug in the dining room. Took something to keep my stomach below my throat in cleanup.
For those who don't know this isn't my first rodeo. It's my 4th or 5th. Sometimes it's easy and sometimes not so much.
My friend behaved herself, and went home at noon today.
Now to go find the boy kitty. I am home alone with four 4-leggers. Sweet, sweet pooches and kitties
0 -
taxol (any taxanes really) can also cause hair loss... So it may not start when regime changes. Often fuzz grows in and then falls out.
CMF is an older regime where some women didn't lose ther hair, but most MO's find the regime quite outdated and less effective (thus less side effects) than what has been developed in recent years.
It's scary and awful....but I guess it means the chemicals are working... Killing off the fast growing cells just as we need them to do.
0 -
hi Erdie, I'm starting taxotere this month. Also in Boston. Where you at Dana Farber? My MO hasn't mentioned cold caps, so I'm not sure if they have those. Thanks.
0 -
Dara, I'm so sorry you had to go through that. Thank goodness your son was there for you. And your protective husband making them sanitize their hands before going near you is so sweet. Sending lots of love and prayers your way. Cancer sucks!
Lots of hugs!
0 -
Ladies, it sounds like we are all in the same boat. I went in to shower last week and the hair just filled the drain. So I went into town and had it shaved. I still have stubble growing, but at least that is not falling in my food. My husband is taking it hard, because it is making it more real for him. I'm a romantic realist, Bald is our badge of courage and it is beautiful. Wear it proudly, because we will get through this all together.
I have also been noticing that "friends" don't seem to know what to say to me any more. Some seem to have a hard time looking at me. It is definitely discouraging, but on the other hand I have found a lot of support from unexpected encounters with total strangers. In the ER the other night, the daughter of the lady in the bed next to me, came to see me. She had just finished her year of Herceptin. She just wanted to say to hang in there. At my local Pharmacy, one of the pharmacists had walked our walk and wanted me to know she was there and they would take good care of me. When I shaved my head one of the ladies getting her hair done, came to tell me I was still beautiful.
So l'll leave you with a quote from my favourite country songs
Life ain't always beautiful, but it's a beautiful ride
0 -
That's a great quote Elizabeth!
My hair should start coming out sometime this week. Wednesday will be my 14 day mark since my first treatment. Definitely not looking forward to it but I also know it's temporary. Some of the people I work with know about me and the other few hundred will know when one day I have hair and next day I don't. Just another little hump to get over.
No big labor day bbq. Just me and my hubby. Weather here on Ohio has been fantastic so definitely enjoying that.
Dealing with some cold sores right now, another wonderful SE.
Sorry to all of those going through some tough times.
Stay strong and as positive as we can.
Have a great day!
0 -
Dara so sorry to hear of your horrible reaction! I hope your feeling better. What a great support team you have. Sounds like your son was a real trooper staying by your side until help arrived. Kudos to your DH for making everyone follow procedures at the ER. They should know better!
Hopefloats, I was told the same thing about taxol. Your hair may try to grow back but will only fall out again. I was also told it would be easier than the AC. I'm behind on my treatments as my MO had to take the long weekend off. I don't blame him but I'm still a little pissy about it lol
Caligirl, I'm sorry about your stepdad dropping your mom off for you to take care of. After her having heart surgery? Really?!
Sattipearl, oh my! Nothing like waking up to a mess that needs cleaned up with your sensitive stomach. I hope the pet sitting pug finds his manners pdq! The only four legged critters I have is a stray cat I call Bob The Cat and the wild critters that roam the nearby woods.
Seq24, yes unfortunately our treatments make us worse before we get better, just remind yourself it's one step closer to being cured. I know it's easier said than done. We're all here for you. Complain away! I've had 2 treatments of AC so far, as for hair I've lost my shaggy head of hair and my legs haven't been this smooth since before puberty! I still have my eyelashes, eyebrows and most of what's below the belt. It's funny that my bikini line is smooth but the rest is still hanging on. Sorry if that's TMI! lol
Kelly, I'm sorry to hear of your mom's passing. I love having my mom here with me, I just hate how quickly her health is failing. I worry that she may not come home from the nursing facility. I'm going to have a hard time taking care of me as my treatments progress. I tell myself it's for the best but that doesn't help much. I pray we both get through all of this with flying colors.
I'm sorry if I missed anyone, I'll go back and read more and take notes!
Who would have thought that a lint roller could end up being the best hair brush ever? I try to find humor in all my daily activities!
Until next time!
Lori
0 -
WenchLori, How are you feeling? You seemed to be having mild side effects in the beginning. I hope that still is the case. You are an inspiration and always know just the right thing to say. Thank you for that. I am still shaking in my boots and reached my breaking point on Saturday. Had about a 6 hour cry and got up the next day looking like I was run over by a train. So many fears yet. Will my life ever be the same? Will I be able to enjoy time with my girls through all this? Treatment is on Fridays. Sounds like my weekends are shot. Am I going to be too sick to get out of bed? Will I even be able to function at all? I am taking this really hard and even my husband doesn't know what to say or do anymore. It's been a rough weekend.
0 -
Abjclan, it does seem that we are falling apart doesn't it? Kind of like a row of dominoes, one tips and we all follow! But, I think it's part of the "perks" of the monthly chemo threads. We're all on the same schedule, just a little before or after one another, so of course several of us start experiencing the SEs together. With each experience though, I find myself saying, OK, this totally sucks, but I can do it. My dad always used the expression, "That which does not kill us makes us stronger." I guess I'll be ultra-strong when I'm done. I just hate that my kids and grandkids see me as sick. They have incredible role models with their parents though with how we care for our parents when something happens. We went through what many of you are going through with my DHs parents. They weren't super close by, but were in a great assisted living group home that could transition all the way to hospice. It's so hard to see those we always thought of as taking care of us, needing help themselves.
Today is day 7 post 2nd infusion and I feel pretty good. Mouth is almost back to normal, tongue is still a little sensitive, but no canker sores this time. I think I went through a whole box of baking soda with rinses. A few mild intestinal issues, but no dizziness and haven't passed out since Saturday. (It's the little things that make me happy!!) My head still gets sensitive if I have a cap or something on it. Seq, I know what you mean about a husband's shaved head. I feel the same. My DH did his a couple of days after I did. While I totally appreciate the sentiment, it's a reminder for me, and I almost feel guilty putting on a scarf or wig since he can't (well could, but that would be totally crazy! lol) His hair is growing in quickly while mine is losing even the nubs. I do still have a few eyebrows and my eyelashes.
I had one friend who didn't lose her hair to chemo. It was about 17 years ago so she was probably on the older protocol. She sailed through chemo and rads so keeps telling me, "Well, I didn't have that SE so you won't!" She's older and has had a hard life with polio so I cut her some slack.
Does anyone use massage to help manage SEs? I'm thinking that really might help with the bone aches and pains. I've never been one to get massages other than when I had acupuncture but I feel like I have all this junk in my muscles that needs to be pushed out. My insurance won't cover acupuncture so until I see what sort of bills I have with this, I think I'll skip that.
Hope all have a great day today. Don't labor too hard!
0 -
Lori, having your mom go to the nursing home must have been very emotional and stressful. I'm sorry that you're facing that at such a challenging time. I recall Barbara Walters getting chicken pox after hugging someone with shingles at a party. It's remarkable that someone her age would have not been exposed earlier. I'm 62 and my sister and I typically went through the measles, mumps and chicken pox at the same time. My poor mom!
0 -
Satti- just admire your tenacity and you're list of treatments, etc below your signon. I love the 4 legged babies...they just need to stay healthy for us!!
Elizabeth- thank you for that quote! I think it definitely is that we can't "see" ourselves all the time so feel normal until seeing someone that is trying to get used to the new "look". I'm feeling that just with a haircut and know I need to deal with the next step soon.
WenchLori- thank you. I guess I want you and Cali to know I "feel" that pain. Went through plenty of the guilt trying to balance care, then moving to facilities and making decisions for someone else's life. It's hard enough when it's you or your child....but to constantly try and make the "right" decision for our parents is difficult. Thank you for always bringing humor into this thing called life!
DaraB- I already think you're ultra strong! I feel bad, but thanks for being one of the sister's paving the way for us on this thread! I think of my mom who went through 3 diff cancers, all with some sort of chemo....but never lost her hair. I don't remember her complaining about SE's, but I also think maybe I was not wanting to see them. I agree- like your friend it was a long time ago and I don't think the regimen was quite as strong. I haven't heard of massages, but someone I met on Instagram (LOL)- she said she'd get in hot tub to help with the pains from Nuelesta.
I may be totally wrong, but my husband has had shingles twice (in between his fingers- young, in his 20s)....I thought you can "only" get it if you've had chicken pox? Don't quote me lol.
Hey- another SE....my face I guess is dry....sometimes almost felt like I had some kind of sunburn...anyone?! LOL
Seq24- I think after Friday you'll feel some relief...I know that sounds weird, but this waiting for you is so hard....
I always repeat myself but I appreciate everyone here and I'm so grateful that I got cancer now- I can't imagine pre-internet with no one to "talk" to.
0 -
I started chemo Aug 16. Ten year anniversary of my mother's death. Not a great day. I am 67, a grandma, wife of retired pastor. I've toted this "knot" for a while and, because I was busy taking care of my husband (who has lots of physical issues himself) I ignored it. Until it began to show on the outside. So . . . I am stage 3b, ductal invasive with at least 2 lymph nodes completely gone over to the dark side. Because of all the conditions I start with, my oncologist and surgeon agreed I needed aggressive chemo before surgery. Port placed 8/5/16 and ACT is my poison. Four rounds of AC at 2 week intervals, then 12 weekly Taxol rounds. Five months. Then surgery. Then more chemo and likely some radiation, too.
Today my husband sheared my head. My hair was always short but this is really a downer. I have a wig--my daughter was way out front on that--but I can't get excited about it. Today I have a soft cap on and a blue scarf tied around it. Going to take our daughter and son-in-law to dinner to celebrate their 15th anniversary later today. Will be interesting.
First round of AC I became really sick with nausea. I followed the protocol I was given about which anti-nausea pill to take and when but never got on top of it. Puked my socks up for a solid week. Got some relief the 2nd week and then back for Chemo #2. A visit with the oncologist before the 2nd round meant telling how bad I'd felt and he lined out a whole new regimen to stop the nausea before it began. Following it I have had relief. No actually puking this time although the feeling of nausea is never completely gone.
And the tiredness. It permeates every thing but my actual sleep. I believe my nausea is related to the tiredness, too. If I get too tired, the "Puke Faerie" is in the background, taunting me. But Zofran has become my best friend. And . . . so far, so good.
Ladies, I wish you all well and hope to tag along on this forum as we pass through this trial together.
0
