Starting Chemo September 2015; join us!
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Wow this group is prolific on the weekends.
Scotland, Annie - Thanks for the support. I actually found out that the wedding is supposed to be an "adults only" event anyway, so it's gotten a lot easier to take a pass on this one. I doubt I'd be able to taste the food when I arrived. Also, 10 hours round trip in an airplane with an 18 month old is probably harder than 20 weeks of chemo anyway. XD
Facebook... I have a very select group of friends/family on facebook. I posted about my status/diagnosis and got nothing but massive amounts of support. In addition to my 25 year old cousin I knew had testicular cancer, I found out another cousin had colon cancer. They both shared their experience and have been nothing but encouraging and PM/check in on me every so often. My husband even invited one of his FB friends over - their daughter had Leukemia at age 3 and had a bald head & tube in her throat the first time I ever met her (full head of hair now, tube gone & doing great!). It's that kind of support & sharing that made me want to seek out this group.
Sleep... seems to only come when I'm on the Lorazapam (Ativan). Otherwise, I'm awake at 1:30 or 2:30 and struggling to get back to sleep. I even did a 4 mile rocky hike to Bridal Veil Falls yesterday. I was EXHAUSTED when I got home. Still woke up. Is taking anti-nausea medication for sleep problems allowed?
Hair... It's day 12? 13? Not sure how to count this. A few strands of hair have always come out when I run my fingers through my hair. No change so far. I did manage to get my family into the portrait studio over the weekend and got our Christmas cards made early. I got a hair cut & style Saturday morning just for this session. Meanwhile, my darling son wanted NOTHING to do with the session. Thank god for the professionals and we got at couple photos that worked & had the cards printed on the spot. Beautiful colors. SO, here is my "before" picture titled "Hair Today...". I owe you guys an "after" picture when the time comes - hold me to it!
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Feeling really icky today. Woke up with horrible acid reflux and heartburn. Plus major headache. I called my mo and they said they would call in protonix to my pharmacy. i hope that worksbecause I have my 3rd AC Wednesday and can't imagine getting chemo like how I feel now.
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I see lots of you are having major problems with mouth sores. I have been eating ice chips throughout my chemo infusions. I read somewhere that is helped prevent mouthsores. I haven't had any problems so far. I have had 2 infusions. I also rinse my mouth with club soda if I even feel something different in my mouth and this has helped prevent them.
Shaving my head was probably the hardest part of this whole cancer shitshow for me. When my hair started falling out it was more distressing for me to pick my hair off of my clothes, tables, furniture, shower.....it was awful. I could only stand it for a day(started day 13, shaved day 14)I felt much better once it was shaved. It was hard but you do get used to it. Makes getting ready super fast.
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Gah, so my biopsy site from the 3rd of this month still hasn't completely healed. The scab came off about a week ago and it's just been white. No fever. But looks weird. Since chemo is supposed to start Wednesday, my officemate is pretty much kicking my butt to go get checked. I tried my PCP, but come to find out it's been more than 3 years since I have been in, so she would have to re-establish me, but she isn't in on Mondays, so I can't see anyone there. The nurse navigator at the imaging place that did the biopsy hasn't called me back yet. I texted my surgeon to get his opinion on what to do if they can't see me today. Thankfully my surgeon is very responsive so now I am not freaking out as much.
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Hello again everyone!
Wow this thread moves fast! This forum is great.
To catch back up: My wife just started chemo on 9/25. Port was installed on 9/23. I will try and post a pic of her I took after the port install.
AG3: Yes, my wife received a Neulasta shot the next day. We were able to schedule it on our way out of town to go to the game. My wife did well for the first weekend. The medications seemed to make her buzzed, so she seemed like everyone else at the tailgate. She did fine with the long car ride.
CarolinaAmy: She is taking A/C for 8 weeks and then Taxol for the 8 weeks after that.
ItalyChick: The steroids definitely helped her through the weekend. She did pretty well.
It's been 72 hours since she got the chemo and she is doing OK so far. She woke up with a bad headache this morning and has pain from the expanders, but so far she hasn't been too bad. We know that probably isn't going to last forever, but are hopeful the bad days will at least be kept to a minimum. She was very nervous for the port install and nearly had a panic attack when they were getting ready to inject her with her first chemotherapy dosage. I think seeing the nurse come over in all the hazmat like get-up freaked her out. The chemo center was very nice. It felt like going to first class from coach based on our previous facility before we switched oncologists.
My wife got her hair cut short prior to surgery to make it easier for me to wash when she needed help in the shower. She made an arrangement with her hairstylist that she could come back in to get it shaved for free. She will probably make that appointment this week. We have already got her wig and a couple hats for her. My wife has said the losing the hair part doesn't even register with her compared to the other stuff she has to worry about. We plan on being more active on this thread to keep up with all of your experiences and advice.
OK. Now for the post port pic..
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hi ladies!
wow, this thread does move fast. i hope you're all doing well, as i think about you "strangers" a lot.
i am feeling a little better today, was able to get up and out of the house to take my son to his doctor's visit. and then immediately needed a nap.
the hardest part for me is definitely pushing the depression away. i woke up this morning, wondering if it was all a dream, and then i looked down and realized i still have no nipples. nope, not a dream.
i too am counting down the days to hair loss. my mo said 7 to 14 days and i'm on day 3. ho hum. i'm not even sure i care much, it's just another reminder of how my whole world was shook up 2.5 months ago and will never go back.
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southern - i get that. there is no hiding it from anyone once you are stark bald. not into the looks of pity or concern.
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Southern, I feel the same way!!
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Yep...just hating the pity looks I will be facing but its coming out in handfuls with just a smoothing hand run over my head so its time to for it to go.
Soscaredhubby...your wife and I are on the same chemo regimen. I had my 2nd round last thursday and side effects were less than the 1st round. Not sure if thats normal (whatever normal is) but thats whats happening to me now.
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Chemo #2 was a DISASTER! I got the pre chemo meds steroids and other crap. Doing good at that point. Playing cards posting pics. Then the taxol gets hooked up. About 10 minutes in I started to feel sick at my stomach and thought I might vomit. Then it was like an elephant knocked me down and sat on me. I just could not breathe. I flashed super hot, turned lobster red and started to sweat like a farm animal. I immediately pushed the button. They rushed in and stopped the taxol, put the oxygen on me and hooked up a big bag of steroids and benedryl. It went away in about 5 minutes but oh lord what a scary 5 minutes! I sat there another hour with just a saline drip before they let me go.
So now the whole plan is changed. I am no longer going to get taxotere. They are switching me to Adriamycin and keeping the Cytaxon. Now I have to get a port on Friday. I have to get an echo cardiogram. If that gets scheduled this week then chemo #2 will proceed next Monday.
I'm so freaked out. This is serious shit and I knew it was but it's so real when that kind of thing happens. I just don't want a port. Another surgery. It's just making me crash emotionally. All the drugs I had today and the anaphylaxis has left me feeling like I pushed the truck home.
Now I'm just waiting for all the calls from schedulers. I think I'll take a nap soon. Dang it started out a not so bad Monday. I should have known it would all go to shit when that grumpy nurse poked out that vein in my hand!
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OMG Annie!
Scary reaction. Did they say whether this happened often? I know my Oncologist joked about how they might not be able to give me my white cell shot if I had an allergic reaction to the chemo. You're probably very tired of them cutting into you, but the port surgery was really no big deal. UGH! Was anybody with you? Thank God you were fast on the button trigger.
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i had the button in my hand already because grumpy nurse didn't believe me when I said last time it burned like hell and she would need to increase the saline. So I was ready to push the button to yell at her when the burning started.
I was told by the nurse practitioner, who i absolutely love, that it is not uncommon for this to happen. It's kinda the alergic reaction you get if you get it. Not uncommon on round 2 or even three because your body fought the taxol all month and figured out hey we don't like that shit!
My husband, Jimmy was with me. I thought he might panic but he did ok.
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Oh no AnnieB! I can't imagine how frightening and frustrating that must be for you. Prayers and hugs to you!!!
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AnnieB the exact same thing happened to me on my second treatment. They stopped the infusion for 20 mins. Restarted it and ran it slower. They will give me extra steroids and Benadryl before they give me my third infusion. It is quite common for that to happen. It was super scary when it happened. It felt like I was having a heart attack. I am hoping the same thing doesn't happen to me on Thursday. My side effects after my second chemo were far better to handle. I felt way better.
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Annie so sorry to hear about your reaction but just hang in there, remember you are not alone and we are all thinking about you.
Southern miss you too but I am at work all the time and barely have time to come on the forum and when I get home I usually crash after taking a shower.
DLcygnet great Christmas picture.
Soscaredhubby you are a great comfort to your wife, just look at that smile on her face!
Sorry I do not have to mention all of you great ladies and gents by your name but I am thinking and praying for all of you.
Hugs and more hugs for everyone.
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Oh, Annie! So, so sorry. What an emotional and physical wallop! I hope you're able to rest and recover for the next few days. I'm glad you're OK!
Many of us found the port surgery to be not a big deal at all, and the echo cardiogram is really just an ultrasound. I found the port installation to be more of an annoyance than anything, and getting chemo through the port is much nicer than having an IV in my arm or hand. The mastectomy darn near unhinged me (which I think was more about waking up without all my parts rather than the surgery itself). I filed the port instlalation under "procedure" in my head, and that bit of denial worked like a charm for me. I don't know what works for you, but I hope you find it.
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Wow Annie. So sorry you had to go through that, and sorry you probably feel like you are starting over. I promise you though the whole port thing was way worse in my head. I had it put in two weeks ago tomorrow and only notice it when my head wants to play games with me. I feel weird when I think about it, but then realized it really doesn't bother me other than just knowing it's there. It really made chemo easy and painless.
Looks like so many of us had a bad day today. Some way worse than others. So glad to have this group. Day 7 and I just feel sick. Labs tomorrow.
Hugs and comfort to all.
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Annie! Big hugs! I don't mind the port at all now. I barely notice it and will be glad on Wed to have it. I had my labs today and wish they could have used the port but the contract labs are not qualified. I remember having a small flush feeling at the end of of my taxotere I guess that went a little too fast but I didn't even mention it since it passed so quickly. I think I'll tell them before the next one.
The shedding is getting to me. I put on one of my hats just to contain it
. My wig situation is just getting worse. The wig came on Saturday from the only insurance covered choice mail order place and it is the right color but huge on me. I have a petite head. All of the petite cap wigs are short and I do not have short hair (normally) and I didn't even cut it that short last week. Ther are 2 others I can order that *might* fit tighter. Goodness can't I just get one locally and have the insurance company pay for it???? 0 -
Grumpy Nurse...
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Labs tomorrow for me, too.
I went for a wig fitting today, which was kind of fun. Trying to decide if I want to bother with it or not. The only thing I want it for is maybe not looking like a cancer patient to the general public on occasion. I may be too lazy for that. My hair choices for decades have been pony tail or long enough to stay out of my face (seriously, I brush my hair after the shower and leave the house with it wet. Every day. Lazy.). IF I do a wig, it will be short, straight and sassy. The wig place attached to the hospital was way too expensive, so I'm shopping online. The fitter and stylist were incredibly nice and helpful. I've met some seriously stellar people in the past few weeks.
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I have wig I won't be wearing. It's Jon Renau Jazz if you want to google it. Youtube has some video reviews too. Anyone can have it for free. I ordered Heidi instead. It'll be here tomorrow. Jazz is cut like Meg Ryan short style. The color is 12/30BT rootbeer float.
PM me.
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so I guess the sores are somehow near my eustation tube (ear to throat) so I have intermittent pain when I swallow below and around my ear, although right now it's just constant. MO said its mucosis (sores), keep swishing the baking soda and salt water (I'm also swishing biotene) and we'll just monitor it. I was fine with it all day but around 4....owwwweeee. Anyone experience this
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Notified by email by UPS that my wig would be delivered today between 12:30-4:30. Got an email from them at 3:00pm that delivery was attempted but no one was home to accept so they rescheduled for tomorrow...HELLO...I've been here all day...God I hate bad service and liars. Where the hell was the driver? Gone home early, I bet. Looking for a phone number to call to blast someone. You don't want to mess with women when they're losing hair along with their patience...lol
My rant for the day
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Annie: brunette? What size? I apparently have an extra small head. And how are you? I think I'd be a basket case after your morning.
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I'm ok now. It's average. It has adjustable tabs. Go on the jon renau site or wigs.com see the size guide and the vids. It's a golden auburn brown blended and tipped it's not shaded or rooted. They have pics of the color. Wigs by Pattis Pearls has a good video.
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Thanks, Annie, but I don't think an average is going to fit me, even with adjustable tabs. Apparently, I have a pin head. Glad your afternoon is going better than your morning.
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Annie
So sorry to hear about this horrible reaction. Are you getting Taxol or Taxotere or is it the same thing?? Because I was scheduled to get Taxol and they told me someon must stay with me while I am getting the Taxol because of the potential side effects which you were so unfortunate to get.
Rosieo
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Rosieo taxol and taxotere are the same. I'm calling tomorrow to ask about keeping the taxotere and just going slower and adding the benedryl. I'm concerned about the Adriamycin heart side effects since I also need radiation. On the heart side. I really feel like I'm starting over.
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so is there some correlation between pinheads and BC? I was told I have a pinhead too! Buzzing occurring at 2pm Saturday with Steve the wig guy (so I call him). He's a hairdresser who runs a wig shop in the back of a salon. My friends are coming. Deep breaths
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my folks came over and brought us dinner. My dad hugged me and I just completely lost it. I guess this whole day was way more upsetting than I thought. Sometimes, even when you're 43, you just need your Daddy.
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