Starting Chemo March 2015

BBwithBC45

New SE for me - I got a mouth sore, despite diligently rinsing with Biotene.

rleepac

BB - sorry about the mouth sore try a rinse with warm water and a tsp baking soda

rleepac

2 new SE for me. First, is that the pads of my thumbs and index fingers are very tender. Almost feels like a blister but there's no blister. Weird but manageable.

Second is a heart rate of 134. Yowzers! I called the MO on call and he said that if I'm not short of breath to try taking an Ativan and watch for a few hours. I did that and it came down to 95. Now, 4 hours later, it's creeping back up and is currently around 108. Just took another Ativan but will call him back if it doesn't bring it down. Chemo...the gift that keeps on giving!

Bekah

Jackbirdie

Beka- bummer about the heart rate! That's a self-fulfilling conundrum, because while you worry about it being high, it goes even higher! Maybe you gave yourself white coat syndrome.. In case you are interested, here is a link to the earring tree. There are all sizes, some much smaller and less $ $

etsy.com/listing/153073236/spiral-copper-earring-tree-holder?ref=shop_home_active_3&ga_search_query=Earring%2Btree

And BB, those mouth sore are very bothersome. I concur with Bekah. My onc nurse said to keep the glass, the spoon and the baking soda on the bathroom counter and any time I enter the bathroom for ANY reason, not just to pee, checking your face, your hair, putting towels away. Whatever. Stop and rinse. Tepid water. She said 20 times a day (once an hour on the modified steroid sleep program) wouldn't be too much. I had a little bit of soreness in the tip of my tongue around days 3-8 but this definitely helped keep it under control.

BBwithBC45

Bekah, I had racing heart a few times when I was back home after my mastectomy. At one point it went up to 155 bpm. My husband told me to take a Xanax, but I was so worked up, it wasn't helping quickly enough. So I started playing a mindless game on my iPad, I think it was Candy Crush, and it finally helped me calm down.

I think in my case it might have been SEs of anesthesia

so-she-did

Wow! I can't believe how far behind I am on reading these posts! I skimmed but I'll catch up tomorrow when I am maybe functioning a bit more again. Today was the roughest yet pain-wise. By the time I got back from a fundraiser luncheon about an hour from home I had such horrible back pain that I couldn't get comfortable no matter what I did. I finally took Norco but it didn't even touch it for the first couple of hours. I'm waiting another 20 minutes to go to bed so that I can take another dose of pain meds (will try oxy this time) to try and get on top of the pain.

I, too, have been in the shopping mood which is so atypical of me. There are so many things that we need to upgrade but just haven't taken the time to do. I still use a flip phone so that is the first thing I want to get taken care of! We need new couches badly (2 kids, 2 dogs) but think we will look for used. I'm thinking leather (or pleather) so that they can just be wiped down.

Kachin - I am now living in Reno, NV. Talked to my mom today and she said you guys are expecting some heavy, wet snow in the morning. My mom wasn't thrilled. She is ready for spring.

shaz101

So-she-did its a horrible side effect. The only thing that came near relieving it for my was an oxy. I hope you get it under control soon. Lots of gentle hugs for you. 

And yes if you don't look on here every day, it can take ages to catch up again. 

Bekah how are you now. Its one of those things that gets worse the more you think about it. Can you try meditation or getting really busy with something that will take your mind of off it and see if that helps. 

waiting-to-exhale

hello All, i hope I can join you. I just started ACT chemo on friday afternoon. I am waiting for a crash, when does this usually hit? I am just starting day two. I keep waiting and i only have a bit of fatigue so far and some heart palpitations.

Trvler

Don't forget about lysine for mouth sores. Take 2 at the first sign of one and then pop a few more that day. I will be interested to see if this works for not. I am thinking of taking a few before I start to see if I can head them off at the pass.

Port still really hurting but I can only stay still for so long.I guess it is slightly better than yesterday. I think i am naming my port Percy after my daughters favorite book series.

wrmbrownie

Where you do you get Lysine? And it's a pill?

Trvler

I only buy stuff like that at Whole Foods but you can also get it at drug stores, probably GNC. Although I don't trust anything from GNC after the news story that, when tested, many of their supplements had nothing in them. It is in a pill form. It's pretty easy to find. Even probably your regular grocery stores vitamin section would have it. I am going to drive everyone crazy reminding them about it but I had horrible mouth sores for about 2 years off and on and at one point, I had about 6 of them. They feel like you are getting little shots in your mouth over and over and make eating impossible. So I researched to find out what would work and I saw lysine recommended. Not only did it work, I stopped getting them. But take it at the first sign of one because they are harder to stop once they get going.

Jackbirdie

my onc nurse also recommended the l-lysine, taken 500 mg daily. And it is a pill. It's the only supplement I still take until chemo is through so as not to confuse the issue. I buy NOW brand these days for all my supplements. they are supposedly natural and get great reviews from thousands of people on Amazon. I have just found it easier with the fatigue I'm feeling (my worst SE) it is easier to shop online than hunt the stores. So IF I KNOW AND TRUST the brand, I do the shopping on line. Always come perfectly packaged. NO TAMPERING, ETC.

Trvler- sorry the port is still sore. Mine was for a long time. I seem to be a very slow healer. But I am finally getting to the point where it itches a little instead of hurts. A good sign. I can see now that it will be my friend. Weekly blood draws are sooooo much easier.

Jackbirdie

Waiting-To-Exhale- a big welcome to you! Sorry you have to be here. You will surely enjoy having a whole bunch of new friends that can help with advice on treatment tricks, or just to vent. We are here to listen if you need it

Trvler

I think I will be ok by tomorrow. I am going to take one more hydrocodone 1/2 tonight and then tylenol. Also going to switch over to tea in the mornings for a while to make sure I don't suffer caffeine withdrawal when coffee starts to taste bad. It seems to me like lots of people are saying they had bad caffeine withdrawal because they quit coffee in the first few days. I have just always taken ibuprofen BEFORE stopping coffee in the past if I had to for some reason. But I am trying to not take Ibuprofen.

Beachbum1023

Hello March Ladies! I just dropped in and wanted to wish everyone well this week. I too am a coffee drinker, and they want you to hydrate during chemo. My nurses told me to drink twice the amount of water as coffee to balance it out. During chemo I did not drink much coffee, it had zero taste and I like cold beverages. But thankfully I am back to coffee however I do drink less, and I split it regular and decaf to make sure I hydrate and sleep enough.

Good Luck Ladies, I hope you have a comfortable and peaceful week!!

Jackbirdie

so all of you might remember I was so afraid of my hair coming out in clumps and the stress I felt this would cause me, I shaved my head on day 2 of first cycle of chemo. I have had no problems, and am enjoying, and not worrying about when and if. The look has been ok for me, and the hats and new earrings great fun.

But I thought it might be interesting to some of you that today is day 17 and for the last couple of days and especially sleeping last night and now this morning my head feels very, very tender. It is amazing how they can predict these things down to the day. I had been told day 14-17. I have made an appt. for it to be tidied up tomorrow. Just in time methinks.

Jackbirdie

thanks for dropping in Beachbum! And thanks for the reminder on doubling the fluids for every caffeinated beverage. And I believe that goes for alcohol as well, though I am abstaining for now. From alcohol. Not coffee, harhar har

Trvler

Abstaining from alcohol is pretty easy for me. I am not a big drinker anyway. But I do notice, even if I have one cocktail, dehydration can set in the next morning. The other thing I have started doing and will do more of when I start chemo is put a bottle of water by my bed and drink some when I get up to go to the bathroom. So I am sipping for 24 hours instead of 16.

Jackbirdie

Trvler- just make sure not to take Tylenol/acetaminophen at the same time as hydrocodone. It's ok to take Advil with it as it acts differently. But hydro has a lot of acetominaphin already in it. It is very hard on your liver, and chemo drugs are taxing your liver to the max. I take no Tyleinol products ever

Beachbum1023

Hi Jackbirdie, I had asked my MO about alcohol because I had my last Taxol on 11/25 and wanted a drink for Thanksgiving. She told me I could have two, so I said oh a bottle of white and a bottle of red? She didn't laugh.............cheers!

Jackbirdie

Trvler- great idea on the water. I'm going to try that.,I never drink enough water.

Trvler

Thanks, Jackie. I do know about the hydrocodone/tylenol thing. I forget how I knew that. I found out pretty recently. But I think by tomorrow I will be off they hydrocodone. They told me to not take Ibuprofen unless I had to. If I HAVE to take something, it's going to be stronger than Ibuprofen, I think.

Trvler

Did anyone else feel like they had to go out for a 'last meal' before they started? Lol. I am having two. My favorite pizza place tonight and we went to a wonderful prime rib place last night.

SC: How are you doing today?

Bekah: i hope you are doing well this weekend and not having as much trouble as the last session.

Jackbirdie

I stick with oxycodone because it's not mixed with anything, it's pure. I can cut them in half if I need less. But with my dmx, I couldn't have made it without the oxy. It's the only thing that even touched the pain

If anyone is interested, and not to be naggy, here is some dope on acetaminophen/Tylenol. Scary.

http://www.drugwatch.com/tylenol/

BBwithBC45

Uh-oh, I think I got the shopping bug now, too. Just went on a shopping spree, bought a dress, two jackets, and makeup. At least it's not 2 am.

Trvler

I wonder how oxycontin compares with hydrocodone in terms of the amount of opiate? Does that makes sense? So if you have one tablet of oxy cut it, how would that compare to 1/2 hydrocodone in terms of the similar ingredient? Or am I wrong that it even IS a similar ingredient? Aren't they both opiate derivatives?

Jackbirdie

The difference between oxycodone and OxyContin is contin is time released.. My ins company usually charges me more for time released and so I go with the simple. Plus it's easier to control the dosage and timing if you know it's been released immediately into your system. Oh, and they say you aren't supposed to ever cut time released tablets. Another reason I choose oxycodone over OxyContin

Both meds come in varying mg strength. The difference between hydro and either of those is hydro has Tylenol in it. I hope I'm not being confusing. It also comes in varying strengths of the oxy part which you can read on the bottle. But the Tylenol amount has to stay the same, even when opiate levels go up because the government has restricted how much Tylenol goes in. For the reasons mentioned in the article I posted above. And people don't realize that Tylenol is in so many different products. Cold meds, cough syrups, otherback pain relievers etc etc. So people can quite unwittingly get enough in their system to jeapordize the liver

I usually ask for 10 mg oxy, (they start at 5 mg, go up at least to 20) but quite often I cut them in half. It's like a security blanket knowing they are there, especially since I still have significant post-mastectomy pain, even after 90 days. Waaaaahhhh.

Jackbirdie

yay BB you go girl on the shopping! It is proof that life goes on!

PrincessOfMeh

Trlvr, I splurged on lots of shrimp as a pre-chemo meal. A great many of my favorites are seafood (I would kill for marinated tuna steaks right about now or -- ooh! ooh! -- honey sesame salmon!) and it'd been recommended to me to give up my absolute faves during chemo so I wouldn't develop negative associations with them so the shrimp was my last hurrah. Funnily enough, it's day 11 for me and my sense of taste still hasn't changed. I've also regained several of the pounds I lost the week before chemo, when I couldn't eat because I was so nervous. Still eating everything in sight. Not sure what's up with that.

ETA: I'm not much of a drinker, but I do cook with alcohol sometimes. (What my MO doesn't know won't hurt her. LOL)

BeatIt2015

Hi Brave Sisters!

I just did a catch up read of all the posts from the last week. You are all AMAZING and helping me so much. I know it will be this group that gets me thru this. I will have treatment #1 on Tuesday. This past week has been so busy. I'm a big planner and feel so much better if I actively prepare for the worst (and hope for the best!) So I have lined a trash can with layers of bags and placed next to my bed, scrubbed every inch of my house, put bottles of water, straws, ginger drops, tissues everywhere, prepped my chemo-bag, stocked the fridge/freezer full of organic chicken and yogurt, Filled my Rx for steroid and nausea meds, yadda-yadda-yadda.

I am doing TC x 4/Neulasta on day 2. MO suggested a port but I balked and she said ok. At my chemo-Ed class the nurses checked my veins and said probably OK without port but I could tell they woul have preferred port. They told me to drink tons of water before coming in for infusion and then they will put a heating pad on arm to get veins to pop. I hope this works, if not, I'll get a port.

As many of you have written, the uncertainty at this particular point can seem overwhelming, but the main event is close and I feel ready (as I can be) thanksto all of you. I will be making one more shopping run tomorrow in case you have suggestions for my shopping list.