Starting chemo February 2018
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hugs momlovesherkitties! I hope you will find it ok eventually!
I finally got around to doing it this morning & I love it. I came out of the bathroom saying "welcome to Wakanda!"
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Moth- thank you for your kind words and for that link. I thought I scoured the internet for help, and never even came across this. Not only is it very helpful, but now I don’t feel so alone. Also, I have something to bring to my doctors when they act like I’m the only chemo patient in the world that has complained of these issues. I sent my bf to pick up the script at a different pharmacy, and also asked him to get me some diaper cream! Lol, I’m hoping that this will at least act as a barrier so that I’m not in screaming pain every time I have to go. This is not anything I ever dreamt I’d be dealing with, let alone chatting about it on a public forum, but I’m glad i did because now I feel more hopeful
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amburt-glad your whute coubrs are goung up. Sucks being hospitalized. Hope you are home soon with your family.
22fighter- it is so ridiculous that a person with severe acne secondary to a side effect from chemo can not get the prescribed medication from her insurance company. And then to have your private parts on fire is another horrific problem.
Moth- I went to have my head shaved yesterday and changed my mind. After reading several posts from you and a few of the other ladies about possible nics during shaving which could result in infections. I decided to have my hair scissor cut very close to the Head. the scissor cut worked great. it's very close to my head and no cuts. My friends were there and we all had a really good time. Take care and Best of luck with your treatments.
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Okay, ladies, here is what ended up doing. I decided buzz my hair down to 3/4 inch. I feel it's a good start. I just couldn't shave it all off. At least I'm not collecting piles of 12-inch length hairs. Now it's only 3/4-inch length hairs. And now I have a good idea of how I will look once my hair hopefully starts growing back. Actually, I look like the little girl in the series "Stranger Things." I could be her mother. LOL! I know that my 3/4-inch hair will all fall out, but this was just a baby step toward that point.
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22, I had bad vaginal burning too, thought it was a UTI at first and was trdated with antibiotics but my Doc did a growth culture and said it came back negative and he told me the burning can just be from the chemo, it was the worst the first few days after my infusion was this true for you too? Welcome to the newest members here, hope everyone had an OK weekend. Ambert hope you get to go home soon, hospitals are no fun.
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Deb mine started on day 8 (today is day 12 for me so 5 full days now). I woke up on day 8 with sores in my nose, diarrhea for the first time since infusion, and the pain in my vagina. I should have started taking sitz baths that day but I didn't and now it's out of control. Was there anything that helped you?
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Hello everyone,
It has been a while since I posted something. However I have continued to read your posts. I was sad to read the misfortune of some of you: Deb, 22fighter, Laurie, AmBurt , and all the others.
I am starting a cold, no fever but worried because I am alone in US with 2 teenagers and I cannot afford to be hospitalised for IV antibiotics if I get fever. They are only 13 and 15. Too young to stay by themselves. My fake husband is in Belgium because we thought his mom was dying. She had an intestinal obstruction turned bad with pulmonary infection. Several organs were failing. But since then she has been better and her organs have started to work fine again. This was such a relieve for me! She is only 67.
I have some mouth sores and I finally don't get anymore this sensation of being drunk and foggy. Strangely enough I have lost less hair last time I washed them probably positive effect of the fasting. I am a little overweight and the fast I did last week make me lose 3 kgs but I ate so much over the weekend I am ashamed! I need to take my life back, go exercise, eating healthy again, work on my class. I don't want to have my kgs back! My moral is OK but I am worried of having a cold! So laughable.
Next chemo day is Friday then it will only be my son and I as my daughter will go camping with her girl scout troop. I hope I will be OK because my son tends to be self-absorbed...maybe I 'll be surprised.
Wish you all a good week with few SEs
Lolotte
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and 16000 dollars for the neulasta shot! It is insane!
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is anyone else on dexamethasone for the couple days post infusion & do you get the post steroid crash and shakes? What do you do about it? Just wait it out?
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Lolotte - that's crazy price for neulasta! I saw online rx drug price comparer that costco in us has it for about 6000. It's 2700 in Canada.
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moth-i take dexamethasone for 2 days post chemo. I'm hyper the evening of chemo but Im ok with the pills. I heard one of the ladies complain to the chemo nurse that she experienced chills when she took dexamethasone. The chemo nurse was not very sympathetic and told her it's only for two days don't worry about it. She probably would not have been so nonchalant if she was the one experiencing the chills. Good luck. You have been through so much with your medications treatment. Hopefully things will start leveling out and get much better.
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hi ladies! Hope everyone had a good weekend! I'm doing round #3 as I type here. I caught my son's cold over the weekend. No fever, just slight sore throat and congestion. It's a mild cold. MO said my counts are great so I can go ahead with chemo #3. Yay! I did not want to delay this process for a small cold!
OFMICE - good luck today! Wishing your SEs are at minimum! You look great!
AMBURT - I'm so sorry you are at the hospital! Hope you get better soon!
22fightfor - sorry about you insurance issues and your vajayjay issues. Both sound bad to deal with!
DEBS sorry D is back. I really hope it stops soon! thanks
All of you doing rounds this week - good luck! Stay positive & hope SEs are mild.
All those recovering from SEs - hope you feel better soon.
Hoping a good week for us all
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hi guys,
On my 8th day.. since i had bad wbc records in my frst chemo .. my doc adviced me to do neupogen shots from 7th day till 10th day followed by blood test which shall determine if i need more..
Yesterday after neupogen shots i got mild headache today morning.. but when i went clinic for shots today i checked my temperature i was normal later today im feeling okay.. but slight bone pain from the shots..
My doc in advance to chemo had told me to once chemo starts to apply betadine solution after bath in my underarms and vagina area.. lil bit nasty and messy but its for preventing the vagay related issues post chemo... its cheap and its effective.. you can ask your doc prior and try if it might work for you
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Moth, I get 5 dexamethasone pills post treatment. I did crash afterwards with fatigue and a generally icky flu-like feeling...no chills though. I'm in Manitoba but my it looks like I'm on BC cancer protocol so we may have similar meds?
Tomorrow I go for my 2nd round ... luckily they were able to insert my picc line today...yay!
Hoping I don't crash so hard by the 3rd day.
Noticing some major hair loss starting last night. At least I got a wig last Saturday...it actually looks nicer than my real hair...😔. Waiting on two hats I ordered online. I will get hubby to use the clippers someday soon.
Have a restful night everyone!
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hey ladies- it's been a while and just checking in. Round 3 was last Friday. More fatigued than earlier rounds but overall a similar experience including the Neulasta which is my least favorite each round. My boyfriend buzzed my hair last week and I'm over the hair loss part. Wearing a wig till it grows out then boy short style!
I read about some of the obstacles some of the ladies here have gone thru and just wanted to say you're in my thoughts. We'll get thru this! Sending you all love and hugs!
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I think the onco nurses have seen it all and unless you're actively having a heart attack their response is like:
I know not really, but sometimes it feels that way a little.
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moth-I'm not taking steroids in pill form, I get mine with my infusions. I get the shakes on day 2 and 3 afterwards.
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moth- I'm on the steroids and as I lay here I can feel my heart pounding from them. I may go grab another half of an Ativan to counteract it. My Dr said i could take less at night but it's as a risk of fluid retention and I get nervous!
Cbok-lol, I think u are right, they see it all. As a nurse myself I know they care, but I'm sure they hear the same thing all the time.
Day 4 from treatment and finally coming out of funk... day 3 i crashed hard. hoping tomorrow is better and have some energy for the 3 little ones who I've been hiding from and their colds 😣
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For those of you on 4 rounds of TC, when did you start losing your hair? I’ve only had one round and it hasn’t started coming out yet but I cut it short and the anticipation feels almost worse than just going ahead and buzzing it off.
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Lovecanada- i believe it was day 18 or so
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thank you all for sharing your steroid experiences! It is SUCH a weird feeling - not chills but just weak and shaky. Kind of like if you have ever come off a scary roller coaster, or out of a car accident etc and your legs are all jello and you wouldn't be able to hold a pen and write anything cause you're just so twitchy.... I was like that all day.
I don't have any ativan
Maybe I should start asking about that.
I got a bit of hip pain last night too but I took my pain meds (after taking my temperature of course) and I slept very well and I feel much better right now. I'm hoping that was the worst of it.
I started binge watching The Crown yesterday so I'm going to hang out and do that again today but hopefully this afternoon I'll be up for a walk.0 -
CBOK - your mean nurse post cracked me up. (I still wish we had a like button on this forum.... )
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Moth- I'm on dexamethasone from day 0,1, 2, take tablets 2x a day, then days 3 and 4 just 2 tablets once a day. I felt hungover until day 10, headache, vibrating in place almost shaking. I drink ensure with protein in the morning, but really just waiting it out.
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Ofmiceandmen - interesting how different the protocols are! I have 2 pre chemo, then 5 single doses (every 12 hours after), then cold turkey nothing. Yeah, that weird vibrating thing is awful. I appreciate that it's keeping me from nausea and vomiting but this weird tired wired feeling sucks.
Just glad to hear others are experiencing stuff like this because sometimes I read others are working or going about doing stuff and I start to obsess that something else is wrong with me....I'm not really up to doing anything because I feel like this isn't my body.0 -
Home but what a journey. I got to go home late yesterday actually but was to tired to post. I had great nurses and how weird that I am reading about ladies having burning in the vaginas because I was to and one of the nurses gave me tip that is actually working. She explained that this is another area that the chemo steals the moisture from and then that delicate area will swell, itch and burn. You all will not believe what she told me many have found gives relief. Preparation H type creams. It reduces and often will stop all symptoms. Don't put it inside of course just apply to the outside and all I can say is it works. You can reapply as often as you need. If the creams seem to messy say you have to work she said you can get like the tucks pads and tuck a couple in there and leave them while it will not help with the moisture part like a cream it will help with the swelling and itch. On the plus side of this chemo can make hemorriods act up also you will be ready for both.
My third round of chemo has been changed from this Friday to next Friday the 23rd was not really given a reason why but I will take the extra days to get a chance to feel better. Or for the doctors to have time to figure out what to do about my port again.
I am going to have to have a third port as this one did just like the first one and infiltrated into another smaller vein. There I was on the one floor that every single nurse is trained to use a chemo port and mine would not let them get a blood draw back so I had to have an IV and normal blood draws my poor arms look like someone beat me up or I was in an awful accident.
Wishing everyone the best and thank you for all the concern while I was so sick. Hope they can keep it from happening again.
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amburt - so happy you are back home and get to rest and recover. Really sorry you will need a third port. I hope the third one works out. This has sure been a difficult journey for you. I will pray the third one is your lucky one!
Moth - I’m on thecssne steroid dexamethasone 4 MG tablets. During infusion day i get steroids & anti nausea with the infusion. Then day 2 & 3 I take a pill every 12 hours (one in morning & one at night). Day 3 on no more steroids. First infusion I was up & about doing stuff day 2 had nausea but had energy. Day 3 already some fatigue even on steroid but had some energy. Day 4 hit really hard with fatigue. Second infusion, I got hit day 2 with heavy nausea & fatigue even with steroids, and felt fatigue from that day until about day 7...never got the energy burst. Yesterday I had infusion #3. So far today day 2 I was full of energy. I just took a nap, but acomplished many things this morning (even a supermarket Run). I could not work a a full time job now. Too much fatigue and constant mild nausea. During chemo week I am lucky if i get 1 minor tasks done. Rest of time I’m in bed.
About Ativan - I am given it right as I sit down on my chemo chair because I’m cold capping and I get nervous & nauseous just by entering my chemo room. It helps me with the freezing period of my head and then I fall asleep. They prescribed it to me so I also have pills st home. The MO said to take it only if the zofran wasn’t working. I haven’t taken it yet as I’m worried it will knock me out and I have small kids around. I spoke with someone this past weekend who had leukemia many years ago and took Ativan during treatment. He told me to be careful with it. He got hooked on it and had a hard time when He was done. His case was very difficult though he was hospitalized for pretty much 8 months while undergoing treatment so he might have had a higher dosage or maybe because he was treated for so long. Anyways, he told me to just Ben careful with Ativan. So I’m just passing this info along to you all.
Jo1821 - hope you’re feeling better! Stay strong soon you will be back to your normal self!
Mom of two - hope your infusion day went well!
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cbok - the mean nurse post is hilarious!!! Thanks!!!
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I haven't bought KY lubricant yet, but that was suggested for dry nasal passages so I would assume it would help the privates out too(you know since it was designed for there!)
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AMBurt- thanks SO MUCH for the info on Preperation H! I would never have figured that out on my own, and that's a great tip. Here's another thing I did find to help with that whole situation, I think I'm going to stay on this as a maintenance program to try to avoid the problem before it starts up again next round. Note that it mentions chemotherapy patients right on the box:
And gosh AMBurt I hope that the third time is the charm for your port. You have been through enough
I'm on the dexamethasone as well- morning and night on the day before treatment, day of treatment, and day after. I think it's just one tablet (4mg) each time, but the directions aren't real clear, so I'm going to make sure I'm doing it right before my next treatment next week. I didn't have any issues, although I did feel a little reved up. I've been on prednisone for RA issues in the past, and I was assured that dexamethasone is not as nasty as prednisone (prednisone makes me insane),and luckily that was my experience with it as well. However, I might not have taken the full dosage, so the jury is still out on that! Lol.
Cbok that post about the nurses is really funny!
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Had round 2 yesterday and love the steroid infusion, but what comes up must come down. Crash burn. Shaved my head which wasn't that traumatic because I cut it to a pixie a few weeks ago. This is my new wig that arrived today. I wish my real hair looked this good. Last round was not so bad except the big D where I ended up in diapers. My WBC count got to 0.87 and I felt like the bottom of a bird cage.I isolated myself for a few days and they came back up. Had nuelastic shot today and so far no se's.Tried to post a picture but that said I can't post links. I will keep praying for all of you.
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