November 2019 Chemo Club
Comments
-
Good morning. I am enjoying this weekend as falls during my "feel good" time between rounds. Going out for breakfast this morning and then we're off to shop for stocking stuffers. Had my blood work done yesterday and the results are already posted to a site I can access. Looks like everything is going fine. My white blood cell count is a bit high but I'm sure that's due to the Neulasta. My liver enzymes have never looked so good. I guess not being able to tolerate alcohol is good for my liver lol!
It would seem I jumped the gun on getting my head shaved as none of the stubble appears to be falling out yet. Oh well, I'm ready for when it does.
Hoping everyone has a fantastic day!!
Charlie
0 -
Hi, ladies. Just dropping in to say that I'm thinking of all of you. Enjoy your weekend.
0 -
Hi Karen,
I’m new to posting, how are you doing with the cold cap for hair loss? I’m thinking of trying this one, since the regular ones are so expensive:
https://www.amazon.com/gp/product/B07TCBSMFJ/ref=ox_sc_act_title_3?smid=A2QK9I3AAORRZQ&psc=1
How did you manage the dry ice? I was going to order an extra set of the gel inserts to replace halfway thru treatment. I am scared of losing my hair since that was a side effect that I had a lot of trouble with the first time, even though I had a wig. Just felt so un-human, so unattractive & ugly version of myself so I want to do it differently this time.
0 -
Well, it's Monday and that means it's chemo round 3 for me. I am dreading this one as I had a pretty rough go last time but I'm determined to stay on top of my symptoms this time and not let anything get out of hand. I also decided to wear my ugly Christmas sweater and Santa hat. I'm hoping it lifts my mood and maybe it will lift somebody else's too.
Has anyone started Taxol yet? I am interested to know if that is more manageable than AC with SEs. I understand I will be given Benedryl for that and that will make me very drowsy. I thought I might walk to the hospital on those days (1.5 km) and then get a taxi back home.
0 -
Hey Charliebug! Wishing you good luck with infusion no 3. I have my first chemo tomorrow. I'm nervous 😟 and wondering if I will be ok. One day at a time. I took my steroids this morning and feel jittery! I have to remember to take the other dose not too late if i wanna sleep tonight... I'm not sure if I should take the anti nausea medication prior to showing up at the hospital tomorrow... oh yeah I need to drink lots of water right? Trying to do that too today and tomorrow
0 -
Thanks Eigna! I don't take my steroids until 1/2 hour before the infusion and then another one at dinnertime. I am sure you will be just fine but definitely update us and let us know how you're doing.
The anti-nauseants I take are also 1/2 hour before infusion. I would give your cancer clinic a call to ensure you are taking everything you need to on schedule. Definitely drink your water.
0 -
Thanks Charliebug. Keep strong! You can do it. Just think of the end line. All of this, side effects etc is temporary. We are strong and we will survive. Soon before we know it will be all over. Big hug 🤗 I will definitely post tomorrow after my infusion.
0 -
Good luck Eigna. We are all standing behind you! You've got this!
0 -
Round two TC, day 5
My first four days since my second TC infusion last Wednesday were almost exactly like the first round. I made it half a day at work on Thursday and Friday, then slept basically all weekend. Today I've had enough energy and brain power to make it through my whole day of work, but I will definitely be going to bed early tonight. My mouth is less sore this time around, which is great, and I haven't had any more bone pain than last time (thank you Claritin!) from the Neulasta.
Ivana - that cap looks very similar to mine. I ordered two caps, two sets of mittens, and two sets of socks so I could switch them out easily. This can be done by just ordering a second set of inserts too. I buy dry ice at the grocery store the night before my infusions, then break it up and put it into open (NOT sealed!) zip lock bags inside each cap, mitten, and sock overnight in a cooler, and bring it all into the doctor's office the next day. When I get there, I remove the dry ice bags and put a set of everything on, then switch it all out once things warm up. I highly recommend watching several YouTube videos of people doing it for the commercial cap systems because they give all kinds of good little tips for doing it efficiently. So far, my system seems to be working OK - I shaved my head last week after I started shedding, but in the last week, my hair is still growing. And I don't have any hand or foot neuropathy yet, so hopefully I'm avoiding that too. In fact, I'm even doing better with the sore mouth issue this time around after making more of an effort to keep chewing ice chips throughout my second infusion. So at this point at least, I would definitely recommend trying it.
Charlie - I hope Round 3 went ok today and that this one is better than the last.
Eigna - you and I are on a similar steroid schedule apparently. I too take them twice the day before, then twice the day of, and then I take them once the day after. I would definitely recommend taking the anti-nausea starting today and drinking a lot of water. They will give you IV anti-nausea meds tomorrow before your infusion, but having some on board early never hurts in my opinion! I am a big believer in taking all the meds - and so far they seem to be working for me. Here's hoping they do for you as well!
0 -
Karen.....thanks for the update on your second round. I have been wondering how it will go for me as next week is the second for me.
Charlie....hope all went well today for you! Let us know!
Eigna...Hope all goes well tomorrow. You got this! Keep us updated
0 -
Hi Dixie. Im Louisiana transplanted to PA.
I’m told not to worry about the Zofran. It actually acts on your brain. That’s why it’s so effective so quickly. The acid reflux is from the chemo I’m told.
I have a question about the Neulasta bone pain. I feel like there’s somebody out there with a voodoo doll and a giant hatpin! There doesn’t seem to be any rhyme or reason about it! It’s like sharp shooting pain like my bones are breaking. I have Tramadol to take, but the pain hasn’t been consistent in any one place to make me think it will work. Am I just weird, or is anyone else experiencing this? I’m dreading the next round of the shot
0 -
Hi Mac.... I had SEVERE bone pain from the Neulasta! Mine was a severe aching...it started the day after the shot, in my knees and it was very gradual. Nothing helped.... Claritin nor Advil... Tramadol would knock the edge off of it very briefly... I have bad joints and have had both knees replaced and one hip replaced... my hip was replaced in March of this year, so fairly new. It was the weirdest feeling I’ve ever had. I can’t even describe it. Also severe menstrual -like cramps that I think was my pelvic bone hurting. Mine was a constant type pain , mostly in my legs and pelvis. It all lasted about 5 days...
Some people are not bothered at all by it. I am so dreading getting it again. I’ll probably be taking oxy next week if it’s like that again , as bad as I hate to take it.
So, no, you are not weird at all. I hope you get some relief! When was your Neulasta
0 -
Margo, my first Neulasta was an OnPro on Thanksgiving Day, the day after Chemo. I’ll have chemo again on December 19 with another Neulasta the next day. I’m dreading it sooo much. This will be the third round of CMF and the SE’s are scary because there’s no predictability. I started having back (hip) pain and two hours later the nausea hit me in the restaurant! And I don’t even know if the two are related! I really thought I could handle whatever was coming because this is the second time for me. But this is like NOTHING else
0 -
Mac....I’m dreading it too , so I totally get it. My On Pro will be on Christmas Eve. Merry Christmas to me!
I also have heard that CBD Oil helps too. I’ll probably try that too. Do you live in a MM legal state? I wish I did!
I doubt the bone pain and nausea are related.
Did you have chemo with your first BC? You have quite a history. I’m so sorry for your recurrence or second appearing. Hang in there this week! Keep us posted
0 -
Thanks Margo.
I had 12 rounds of Abraxane and 4 months of FAC before mastectomy the first time around.
The 5FU is the same this time but I’ve not had the Cytoxan or the Methotrexate before. I lost all my hair the first time 8 days after the first Abraxane. This time I haven’t lost my hair, but my scalp hurts sometimes and my hair is like straw. The first time the SE’s were consistent and predictable. The third day after Chemo was hell. The nausea was constant for 4 days and then I would be better for three days.
This time the fatigue is horrendous. But I’m older. And I’m told your body reacts differently the second time. It’s like, “Hey, I know what you’re trying to do! It ain’t gonna work this time!”
I’m grateful the Chemo might be working. My Oncotype was 18 and they predicted I only had a 1% chance of chemo being effective. But I’ve crossed fingers and Prayers
0 -
Hey, Mac, I'm in the New Orleans area. Our fellow board member Karen is a transplant like you. I learned that about zofran as well, it's interesting. I'm guessing that constipation doesn't help heartburn symptoms either. I bought some pepcid, and that works. I'm also learning which foods/drinks might trigger it for me.
Margo, my 3rd cycle is this Monday, so I'll be getting Nuelasta on Christmas Eve also. My second experience was a little worse than the first, so I'm scared of what the 3rd will bring.
0 -
The timing for you guys is awful so sorry.I was supposed to start wed before thanksgiving but I postponed til Mon. As I felt crappy first week and good second week I should be ok for Xmas but not NYs which is fine. I got weird back and pelvic pains day 3 and 4. And I had a lot of shaking dizzy and insomnia. And I got my period second week. My ovaries just can’t be stopped lol. Second Infusion yesterday. I asked them to reduce meds. They said steroids were already at min. Since they had me on 2 iv anti nausea they eliminated Aloxi. So far I think that was the right choice. Less dizziness less sluggish. I think I had Setatonin syndrome. Already have insomnia “with” a sleeping pill. I also got constipation, heartburn and some fatigue last time. We’ll see what tomorrow brings. hope I don’t start vomiting. It’s my daughters band concert. Hope I feel like going.
0 -
The ugly Christmas sweater and Santa hat was a hit. It seemed to lift some people's spirits and was a good talking point so the time seemed to go faster.
A darkly funny story from the chemo clinic yesterday:
A man, late 50s-early 60s, wiry build, handlebar mustache, flannel shirt and jeans, saunters into the chemo clinic yesterday and grabs himself a seat. The oncology nurse comes over to get him started on his IV and asks "did you take your anti-nauseants before you came today?" He replied "Nope- didn't need them last time and won't need them this time" (Big bragging man voice) She asked "are you sure?" he replied "sure am Ma'am" .
She starts the IV. 5 minutes later he is covering his mouth and waving down the nurse who quickly stops his IV and he dashes for the washroom where he spends a bit of time (lol). He returns to his chair looking a little greenish and is quietly offered some anti-nauseants which he takes without complaint. 20 minutes later the IV is re-started and he exclaims "wow- these drugs are awesome!" Turns out he is a trucker. He was telling his seat neighbour all about fixing the axle on a huge truck. I guess in trucker-land you can get through chemo without anti-nausea meds lol!
Dude, did you really think you could strong-arm chemo? Did you think the rest of us are pussies for taking the recommended medications for it?
If he keeps this up, he is going to have a pretty rough go. Nobody gets through this without some help lol!Some of us had a quiet giggle at his expense lol!
0 -
Hi Dixie...
So you are one cycle, same drugs, ahead of me as my second will be Monday..... so sorry I seem to get everyone confused on here....
When you said the second was a little worse than the first..... as in, bone pain? Or the whole treatment? I can’t even imagine worse bone pain than my first Neulasta. I’m getting really scared because I am afraid I will end up in the ER.
All the best to you next week
0 -
Charlie...that is a hysterical story and oh so typical!! Some people have to learn the hard way!
Have a blessed day and I hope the next few days are as easy as is possible for the week of chemo....( if there is such a thing)
0 -
Charlie - my sister and I wore mouse ears to my chemo last week to amuse the nurses. She drives up to Atlanta from Columbus, Georgia for my treatments and is terrified of the Atlanta traffic, so she calls herself the Country Mouse and I am the City Mouse. We were the talk of the room. (Don't ask about all the crap under the ears on my head - my DIY cold cap had gone a bit rogue!)
0 -
Karen- I love it! You guys are adorable!! I figure any way we can get through this in a "happy" way, we should for sure lol! Too funny about country mouse and city mouse. I have a cousin who lives in the country and we've been calling each other that for years!
0 -
Karen.....Too cute! Made me smile at a moment when I don’t feel much like smiling...
You are not too far from me....I’m in Bham
0 -
Charliebug, your are both hilarious and amazing! I start my TC regime at the end of December so I'm reading all the November posts to find out how other people are fairing. You are all so kind to post and share. We all need each other and I'm so grateful for this resource.
0 -
Hello ladies! I did it! Infusion number one down. Three to go. So far so good 😊. No symptoms yet but I'm sure the next few days won't be easy. I'm back home relaxing and drinking my afternoon coffee ☕️!
0 -
Thanks Kate lol! This is a great way to share our experiences and get support from others going through the same thing (or close to) for sure!
Eigna- You did it! Enjoy your coffee and try not to think too much about what's ahead. One day at a time. You can do this!
0 -
Margo, the bone pain was a little worse for me. With the first cycle, starting on a Monday, I had the throbbing pain in my pelvis on Saturday. It was manageable, but it hurt. The pain from the second cycle started on Saturday also, but I felt it in other areas. It made me waddle when I walked, kind of the way a pregnant lady would walk. And even now, I feel a slight rogue pain every once in a while that I know is from the shot. I'm tempted to ask if the shot is necessary, but I've heard so many horror stories of women getting really sick due to low wbc that I'm scared to not take it also.
Egna, keep us updated with your experience.
0 -
Dixie.....My bone pain started the next morning after the On Pro did it’s thing. Knees first, very gradually, then very weird pain around my new hip, which isn’t bone but is ceramic and titanium. I had that pregnant duck waddle too.
I plan to discuss with my MO the risks and options when I go on Monday
0 -
Day 2 ofRound 1 TC. So far so good. Drinking lots of water. Feeling a tiny tired but that's all.
Feeling like going for a walk outside but not sure if it’s a good idea. It’s snowing here.
0 -
Eigna.... glad you are feeling good... take lotsa naps.... walking was refreshing to me, but if I had to walk in the snow, I’d probably fall, lol. But that’s just me. I would do it if you are used to walking in snow and feel steady on your feet.....I love snow but it rarely happens in Alabama. Hope you day continues to go well
0
