Starting Chemo April 2016
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Numb, my MO is pretty research-based. There has been a study showing no increased incidence of scalp metastasis, but she said she wasn't worried about that, but rather about circulating cells that might be in the cooled areas during the chemo infusion. This isn't something that's been demonstrated, but was her cautious fantasy, so if somebody wants to cold cap, it hasn't been shown to be a problem.
After I showed her photos of the henna crowns, my wife is now agitating for me to shave my head (I have all my hair back) and get one. I said, "I will if you will."
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NJR - She's sent me tastycakes, too. I love the Peanutbutter tandycakes. :P So bad for me. My MO told me not to stress to much about having a suppressed immune system. She told me not to even worry about the cat litter - just scoop it. The Nuelasta shot is supposed to really help. But, that said, I am very careful to wash my hands and not touch anything... Glad you are feeling fine, though! That's awesome!
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day one behind me. Iv steroid, and anti nausea. today neulasta. Took anti nausea before bed, slept well. No side effects yet. Been taking b12, Claritin and Aleve.
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My hair started to go last night, exactly 14 days after 1st infusion. After all the SE from 1st round, it's not that big of a deal. It hasn't come out in clumps though, more like thinning. I've switched to a baseball cap with excess coming out the gap in back. That way I won't shed around the house and can comb it out (literally) when I take the cap off. I may take the electric clippers to it at some point, but haven't yet. 2nd round isn't until the 22nd for me.
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That's great that everyone is doing so well. Is there anyone on this April chemo that is not doing well? I must be the only one who had a bad start. I think my problems were that I was taking Valoid as an anti nausea and it didn't cut it. Then I took Senokot for constipation and it ran me out so my stomach was feeling very raw and between that and the nausea and then the heart palpitations I wasn't worth tuppence. So for round 2 I will do things right from the start and hopefully I will fare out better. Still not looking forward to it though, but it is great to be feeling well again.
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I'm glad to hear you're feeling well again, Numb.
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Numb - round one certainly comes with a learning curve, doesn't it? I'm sure most of us have never been on any of these medications before and have no idea how they will affect us. I found out I don't like the Compazine - may have taken care of nausea but made me feel horrible otherwise. I'll stick to Zofran. Hopefully round 2 goes easier!
bagger - I'm on a two week schedule so day 14 will be my next infusion. I was planning on taking/wearing a hat just so I don't shed all over the chair if I've started losing at that point. (Hopefully keep it contained while I'm there!)
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VSB - Congrats on Day 1 behind! Yay! I noticed a big decrease in my stress from starting. I actually slept for the first night without Ambien last night! Just took a sleep supplement that used to help with melatonin.
Bagger - Best to you in your hair transitions. Some of the gals on the FB page are posting pictures of them in their new wigs, they look great – so natural. I'm Cold Capping and told to expect the "shed" in about 20 days, up to 30%...so we'll see how it goes and how I look. I'm ordering a back up wig tonight. After seeing all the ladies, I feel more comfortable if my hair goes.
Numb – I think there was one other of us that had a really rough start but I can't remember who. I'm glad that you're doing better and that you have a new plan!
NJR – learning curve it is! I have my next infusion due on my shed date too.
KSusuan – HA! Let your wife go first!!! You had your turn with it!
For me, Day 3 after Round 1 TCH: I get a Granix shot for WBC on Tuesday and have my bottle of Claritan in my backpack for that. I'm on Pepcid for strengthening the tummy and Zophran for nausea. So far so good – some queezy and burning sensations but very mild and small bland meals is working. I had a good walk and did some jogging to get my heart going at the lake today and took off my shoes and walked around barefoot and did some stretches. Really nice. Just love being by the lake. I'm feeling a big 'weird' still but faring well. Got my bills caught up and plan to get some more chores and organizing done. Back to work Monday afternoon. My inner delight is thinking of my daughter's new pregnancy! She is having nausea! My dog is having diarrhea! My husband is cleaning the house! I'm doing whatever I feel like.
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So I am on day 10 now and while the Zofran is now working for me should I stop taking it at this stage. From what I have read a person on chemo only needs this for about 5 days after the infusion. My prescription said to take 8mg twice a day for 7 days and that was from last Friday, but I just think I will stop now and keep the rest for the next infusion. Has everyone else stopped taking their anti nausea after the first week ?
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Hi Everyone -
This is my first time posting I am 42 with 3 children 10,8,6 and was in shock on March 15th when I had a mammogram due to feeling maybe a dime size lump or such and thinking it was a caffeine lump or just muscle from exercising. I was shocked to be having a biopsy within 15 min of my mammogram and 2 days later being told I had cancer.
I refuse to let this detour take hold of my life. Unfortunately my spouse and I have also been living somewhat separate in our home for the past five months and this diagnosis does not change how that was playing out. I have a great support system of friends that are helping me and I met with doctors right away.
My port was placed in Monday (April 11th) and for those that ask if you can do things afterwards mine was put in at 11:30 and I attended a honor ceremony for my daughter at 6:30pm that evening. It was sore and mainly felt like I had a very stiff neck. My biggest hurdle was the tape since I have an adhesive allergy and now almost a week later the glue stuff is driving me insane. I started chemo the next day (Tues, April 12th) I am doing 4 treatments of every other week (AC) then the 4 of (T) every other week. My first infusion was uneventful however the nurse said I wouldn't need any anti naseau meds when I got home til later and by 5 pm I was sick as a dog. Really that first day was the worst the next 2 days I kept up on meds and drinking and resting and although at day 5/6 I am still tired I am feeling better and have been starving for the past two days. I also am anemic and will get iron fusions my next two rounds to help with that.
I am not worried about my hair I had 8 inches cut off 2 weeks ago into a trendy short duo to somewhat prepare my kiddos for the shock and the head itching and hair is already seeming to be in full force so in a few days I will have a shaving party and allow my kids to assist. I decided to do fun hats and scarfs instead of wigs.
I am trying not to read too much because I don't want to psychologically have more side effects than I really need to if that makes sense. My cancer is in my right breast the tumor is approx. 4.6 cm and in 2 lymph nodes.
I have one more scan to do my bone since my 8 yr old fell and broke his arm last week and I had to reschedule because hiscare trumped the scan. My cancer is ER+ PR+ HER-
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CREATEYOUROWNSUNSHINE - Very welcome to this group. Sorry you had to join but hope we can help you through this. There are a few of us on the same regime as you. I am also AC + T but my infusions come every 3 weeks, thankfully this will give me time to recover before the next one. The beauty of having them every 2 weeks is that they will be done quicker. So now that you have started your treatment things will feel a lot more positive.
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Sounds like most of this group is on our way. Two days until I go under the drip! I'm ready for this to be done- or at least the new normal. As much as it sucks for you guys, I'm glad I have people ahead of me to tell me what may happen. :P
I got my first letter from the insurance company denying something. It's the MRI. So now I have to call my doctor, have them provide a bunch of stuff to prove I need it and hopefully it'll go through. My MRI is supposed to be on Wednesday. I'm glad I have insurance but HELLO! I HAVE CANCER! The more cautious the doctors are during early stages of treatment, the less this will cost in the long run. Geez.
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VSB - Glad you are not having side effects so far! That's great news!
Bagger - Mine is not coming out in clumps either. Just lots of strands. I did go really short but I love your idea, too!!
Numb - I have my fingers crossed that you got the meds straightened out. I think that is a lot of it. Are you every 2 weeks or every 3? I want to be sure to send some prayers your way as you start round 2. So happy you're feeling good now. I take my anti-nausea meds for 4 days. I get them with the infusion on Thursday. Then I take them Friday through Sunday. Monday I'm done, and I feel okay.
NJR - I like the Compazine - but I use it as an add on, not a main drug. My daughter is a fan of Jurassic Park, so it's been nicknamed "Compy". My shedding was bad but not - "I need to cover my head to contain it" bad. I would run my finger through my hair, and a good handful would come out.
Annie - you are handling this like a trooper! So fun thinking of your new grandchild!! So sweet! Funny that you're daughter and dog are having the side effects and you aren't. (canned plain pumpkin will clear the dog right up). And YAY for the man of the house cleaning it. Enjoy.
Createyourownsunshine - I LOVE your handle! That's my philosophy, too! I'll probably call you Sunny, though, I hope that's okay! Happy you found us, sorry you have to be here. It's quite a wild ride when you're first diagnosed, isn't it? We're on the same regime. I'm surprised your doc didn't give you anti-nausea meds - it's so easy to prevent, but once you're sick, it's hard to stop. That sucks. Sorry. I'm separated from my hubby - we're on friendly terms, but we live separately. So, I rely mainly on my friends, and to be honest, my support network is amazing. If you read this page you'll see that we are all doing pretty well. Numb had some issues more due to wrong meds than the chemo. I tend to hit the low on days 6 and 7, others hit other days. You'll figure it out. Good luck to you.
Twas - thinking of you and your first round. Insurance is a pain, isn't it? I work for a Canadian company and my insurance is top notch, but I was only approved for 6 of the 8 Neulasta shots. I'll let me doctor fight that fight.
I'm day 4 post round 2 and did really well yesterday - 2 mile dog walk, an event - Pints and Pups, and then my whatever he is (technically my husband) came over and we ordered Greek food (Imagine that). I was tired, but good. Today I'll take it a bit easier. I want to cook for the week (I like to make things that can be popped into the oven on Sundays so I eat well for the week). I'll do some barre and some dance (I'm thinking of getting my Zumba on) and just get ready for the coming week. Oh, I get my blue wig today. I'll post a photo on the Facebook page.
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Numb - I had a lousy round 1 too. I spent days 3 - 7 in bed, for the most part. I was too reluctant to take additional pills, but I won't be for round 2. Nausea pills as soon as that starts and more aspirin this time. Isn't feeling better just the bee's knees?
Annie - I'm inspired by how you get out and enjoy nature, and am going to try it during the "dark days" after round 2.
Createyourownsunshine - welcome to the group. I had a similar story of finding a lump, on March 1, about 2 weeks before you. It's funny though, every time I read about one of you under 50, I think, "But she's so young!" I'm sorry you had to join us, but we'll be your cheering section.
Twaz - I'm sorry your insurance is being balky. I hope they cave soon. None of us in the US should have to go through that sort of thing.
CJSharma - I still can't get into FB group. Link/button gave me an error msg. One more time, please? I'm glad you're staying active again in round 2; I'm going to try to be just like you.
I mentioned that hair is coming out, but just on my scalp. No leg hair, armpit hair nor mustache. Not fair!
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bagger - I so wish the armpit and leg hair would come out first. I keep telling myself that the bright side is I won't have to shave my legs this summer! (Although I certainly won't be complaining about it next year!)
Annie - life does go on doesn't it? Pets are going to get sick and houses will still get dirty. Every once in a while I feel like life has come to a screeching halt beyond all this but then the hamper is full and there's no milk in the fridge and I realize that yeah normal life is still happening too!
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Does anyone find they have slight difficulty swallowing by times. I noticed this symptom just now.
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Numb - no, that's not one I noticed. Is it sore, or do you feel as if something is in the way?
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Hi Christine, I fell asleep and when I woke up I took a drink of water and instead of it going down nice and smoothly I sort of felt I gagged before it went down. I think that maybe my mouth and throat just got too dry and maybe this is just a temporary thing, I sure hope so. I did google it and seemingly it is a common complaint with chemo but it must be very unpleasant if a person cannot swallow food.
When you were taking Zofran how often a day did you take it and did you take 8mg at a time? Just wondering. I was prescribed 8mg twice a day but not sure if this is too much.
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Numb - I have 4 mg of Zofran to be taken 3 times a day, but I also take Decadron.
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HI all - quick question - what is the alternate mouth rinse you are using? I can't find the recipe...could you post again? Baking soda + ????
I'm have a really down day, nausea is bad and worry...had dry heaves this morning. Ugh. Last night the steroids wore off. Having a hard time keeping food in my tummy but I'm trying. I'm just wanting to sleep and check out, feeling overwhelmed by the C journey.
Thanks
A
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thanks Christine, I guess it is hard to compare so, I am trying to get it right for round 2
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Oh Annie, sorry to hear you are unwell. I had the same experience on day 6 and 7 but when I got the Zofran on day 8 I felt much better. What are you taking for anti nausea ? I think the recipe is a teaspoon of baking soda in a glass of water, but I stand corrected if I am wrong.
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Thanks Numb -
I'm taking Pepcid to strengthen my stomach and then Zofran 8 mg every 12 hours. Day 4. I hope this passes sooooo soon.
I'm so sorry to hear that you are having a problem with swallowing. I don't know anything to help with that other than going slowly and sitting up right.
A
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Every 3 hours during the day, mix together: ● 1 cup warm water, ● 1/4 teaspoon baking soda, and ● 1/8 teaspoon salt. Take small sips and swish them around in your mouth. Then rinse with plain water.
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Annie I found when I started the 8mg of Zofran every 12 hours that I was greatly improved but it could have been that I was ready to get better by then anyway. I did feel lousy on day 6 and 7.
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I was diagnosed Diazepam for anxiety on Day 6 too and that calmed me down.
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Oh Annie! So sorry to hear the Nausea is hitting you badly! Call your doctor. They probably have something else they can give you. I'm taking Zofran and Decadron as standard with Compazine as an option. My doctor is really keen and making sure the nausea is addressed. Sleep and relax, too. It's okay to be down and nap. I just woke up from a nap.
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So ladies, I'm on day 7 after my first treatment and thought I'd report in. First few days were great, but now some of the SEs have set in - relatively manageable so far, but not exactly pleasant: recurring heartburn (Tums helps), diarrhea, taste buds are definitely changing and the inside of my mouth and tongue are very sensitive, almost scratchy. Thankfully no nausea, although not much of an appetite. Feel lIke all I've been eating is carbs (toast, bananas, rice)...Any tips for getting some easily digestable protein in? Greek yogurt, i guess?Tomorrow will be a full week since round 1, so hopefully on the upswing!
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PDR - I like smoothies. I use VegaOne protein, but you can use any protein powder you wish. Mix it with you favorite fruits and maybe some spinach for some extra iron and calcium and you have a nice nutritious meal that is easy to sip on. Try smaller meals. Do eggs appeal at all? Softly scrambled with a touch of cheese for flavor? Easy to digest and make. Cottage cheese is good too. What about peanut butter on your toast or crackers? After day 7 I had a major upswing - I'm hoping the same for you.
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Annie, so sorry about the nausea. And I agree about calling the doc. I have a bottle of Zofran 8mg that I'm to take every 8 hours + Compazine, if I don't like the Zofran. My worst time was right after the steroids wore off, and then I very slowly got better. Maybe you're like me and it'll get better.
As for food, I keep a sleeve of saltines next to my bed so I can have one when I wake in the night. I need something to go back to sleep. Yes to smoothies. I like bananas and frozen blueberries in mine. For protein, can you eat meat? I could still eat a plain hamburger on my bad days and I've been splurging on steak too.
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