Anyone Starting Chemo in June 2016

NattyB

Yay Heathet! See ya there

Anonymous

Heathet,

That is great news!

Dolly

DistrictGirl

KNardo88 - If you have any questions or unease about your course of treatment, go get another opinion! There's no harm in it - you'll either get a different opinion to consider and can use that as the basis for discussion with your MO, you'll find that the second opinion is in agreement with the original course of action and you'll feel more at ease, or you'll find another MO that you feel even more comfortable with and you want to move forward with. The first hospital I went to is AMAZING and I loved everyone there, but felt a little unease that I couldn't put my finger on. I went to another hospital and received a different opinion - the first hospital ended up changing their mind to agree with the first, but I just felt more of a connection with the second MO. Moral of the story - just follow your gut!

krekre - I'll be on Taxotere, Herceptin, and Perjeta as well - and my doctors have also recommended Carboplatin. I'm definitely not an oncologist so I can't say whether it is normal or not for Taxotere not to be combined with something like carboplatin or cytoxin. However, if you're confused about why it isn't being recommended for you, definitely ask your MO about it and try to get some second opinions as well. Every individual is different, but in my case, I'm ER/PR- and HER-2+++, my tumors are small but highly aggressive with LN involvement, and I'm very young (30 y/o) - given these and other factors, TCHP is the best fit for me but may not be the best for others. Definitely chat with your doc if you have questions or concerns. Feel free to PM me if you have other questions about how I landed on this regimen!

Heathet - congrats on being cleared to move forward!!!

I went to the Beyonce concert last night and it was so amazing that I'm pretty sure I was cured by the end of it. But if not, it looks like my chemo start date is officially June 27 In all seriousness though, I do think I'm going to make a chemo playlist - music can be so empowering! I used to do triathlons and had upbeat songs that were my "mantras" that I'd play in my head when training or races got hard. I think that will do me well when I'm anxious before or during chemo!

labscientistmom

DistrictGirl: my first couple of weeks of chemo I went by myself, mostly cause my teacher husband is still in school, but also to get used to the routine of it and listen to the nurses without distraction. i had my husband put music on the mp3 player on my Kindle Touch (I think the newer kindle's now don't have this feature) anyway, it was so nice to read (I am a huge reader, got new books, whoo hoo!) and I can listen to music with my headphones too. It was great and keeps me in a good place in my head!

Heathet: yay, you get to start the killing of the cancer cells. GRRRR, you go girl, you are a cancer warrior!

krekre

Dollydimples123 -- you described my emotions accurately so far... I'm on that path. NattyB -- Hawaii... maybe it's helping? Not sure, we are entering the hottest part of the year and I don't have air conditioning. And today I was reading all about the UV and nails... it's ALWAYS sunny here!

I have decided I have to prepare myself for a new role... until now, I barely wore makeup and rarely polished my nails. All very natural (or lazy). Now, I'm going to walk around with no hair, fake eyebrows and black nails! Who am I?

Has anyone found a written out "plan" of sorts? Like the bulleted kind that contains all the stuff you can do to prepare that's common for most treatments? In one place? Or will that come from my "chemo class." I've bought everything it seems (except frozen peas) but I'm not sure when/how to use all this stuff. How often do I use biotene? Do I start out taking fiber or do I wait to see if I get constipated first?

I'm interested in being as preventive as possible. But I'm getting so confused. I start out researching one what I think is simple question and end up running into other questions that seem equally important to know the answers to. By the time I come out of the internet hole, I can't remember what I googled and there are 23 tabs open!

labscientistmom

krekre, I love your smile! I don't take good pictures, so I am a bit envious of yours! In a good way. anyway, I agree, there is sooo much to look at, I was mostly looking at the "Tips for preparing for chemo" and Tiffany's twenty terific tips on the "Chemo, before, during and after" boards. Speaking for myself, I am in week three, my main everyday things are: putting Avoplex on my fingernails, using saline/baking soda rinse several times a day, using biotene rinse or dry mouth losenges when my mouth feels funny, drinking a TON of water or fruit tea sometimes mixed with coconut water for hydration, (cause it tastes better, I make mix of herbal teas so no caffeine), drinking one or 2 protein drinks a day, cause it seems to help me feel better, and eating fresh fruits, dried fruits and veggies to manage my GERD. Most days I take a laxative at bedtime too for the constipation.

krekre

labscientistmom - Why thank you very much! For the compliment AND the advice. Googling Avoplex right after this.

DistrictGirl - I will ask... the problem is the appt is on Tuesday. And I want to know NOW. *smile* I seriously need to practice some radical acceptance.

labscientistmom

krekre, I see you are in Hawaii, I got the Avoplex @Amazon. it's made by OPI. maybe if you can't get it shipped you can find someone who works for OPI or a store there? hope yo u find it, A

DistrictGirl

krekre - I hear you girl - waiting is often the most difficult part of this journey!!!

Nextyear

Hi anyone,

I'm having a great deal of achy pain- plus sore throat and headache. Told to take ibuprofen. Waiting for it to kick in.Anyone have suggestions? Sunday will be day 5 since first infusion.

Thx!

labscientistmom

I had a headache all day today too, Was body achy and tired yesterday too, its quite sucky! I sincerly wish I had a magic bullet to give you to make it go away, glad you took pain meds. I found that if I drank a protein shake, it helped. Something about our bodies need more protein to fix the damaged cells that arn't cancer that the chemo is effecting. Hope it helps and you feel better. A

Kazzy115

For those of you concerned with neuropathy, you may want to check with your MO about b vitamins and L glutamine supplement. I used the powder supplement, available in vitamin shops, with my second infusion of taxol and noted significant improvement.

Llroseworld

4 days till my first chemo infusion. Yikes!!!! It is getting real! Dose dense taxotere and cytoxan combo. I'm all stocked up on supplies for any side effects, meals are coming, house clean and laundry done. What comes next is out of my control. I pray I am brave. thanks to all of you who have posted your experiences along the way. It helps

Moondust

Llroseworld, you don't have to be brave. Allow yourself to feel what you feel. You'll get this done and it will be over in a few months.

Nextyear, I think you and I started on the same day. I have taken Tylenol PM at night. That seems to help keep headaches at bay, and makes me sleep a little better. My energy is down a little but I'm still functioning pretty well. I took a dulcolax last night and it had the desired effect!

Heathet, I'm glad to hear you were cleared to start soon. I'm not having much fun so far, but it's tolerable.

I have a general unwell feeling and I wish my appetite would pick up. I am making myself eat high-calorie foods but my weight has still dropped. I started drinking milk to add a few more calories, and I'm making dishes I have not eaten in years, with butter, cheese, etc. This morning I had waffles with syrup! For someone who has battled fat her whole life, this is a totally new experience. I hope this week is the worst and that I will have a better appetite for the next two weeks.

Just get through the day, everyone! This won't last forever.

Anonymous

Moondust,

How many days has it been since your first infusion? I started on 3rd June and it took about 5 days before I was able to eat normally again. Up to that point I was just picking at crackers and ice lollies etc.

Unfortunately, I am back to eating proper big meals and no weight is coming off!

Dolly

Moondust

Dolly, my first infusion was 8th June. Do we count infusion day as Day 1, or do we start the next day? I would either be on Day 4 or Day 5. Thanks for giving me hope

Blowthetrumpet

I am going to see my oncologist on Thursday and will probably start chemo on Monday. To be quiet honest I am dreading it, I am going to try the cold cap, I have bee told to take a couple of paracetamol 10 minutes before, I hope I can stick it out because I really don't want to lose my hair, Ang tips on coping with the cold cap

Cwhitney

I too hate the pitiful looks I get from people. I made the mistake of telling too many people. Many of them look at me, especially because I am 42, and I know they are thinking thank god it isn't them. It makes me more sad because most people my age don't have to battle this beast.

Nextyear

Hi Moondust- thanks for the recommendation. I'm sending my son out to get Tylenol pm now. I'm so glad you are doing well. How funny about the pancakes!

Hi Liroseworld- It's not about bravery, give yourself a break. I never cry, but have because these last few days have kicked my butt. It's ok, let others help you and don't judge yourself harshly.

Hi Heathet- Good luck. The sooner you start the sooner you will be done. My mantra.

Hi cwhitney- don't stress the looks. People just want to help,but don't know how.

Hi Blowthetrumpet- good luck with cold capping. I decided against it- hate cold so much but my fingers are crossed for you.

Hi dollydimples 123- don't even think about weight now. Oh my, I'd love to eat a big, unhealthy meal. Celebrate! You deserve it.

Hope everyone else is doing better today than yesterday.

Elocea

Just wanted to jump in and say hi! I've had one AC chemo so far and my second is coming up again on Thursday (every 2 weeks). Diagnosed at age 33 (now 34) with no family history. Still have my hair (cut to a pixie length) but my scalp has been itching so I think it's going to go this week.

I have lots of support but realized after going through chemo SE that no one really 'gets' how hard this is going to be. Thought I'd join in here with you guys so we can support one another.

Anonymous

Moondust, I think we should definitely count the day of infusion as it is a day when we can and many do feel unwell. I think you will be fine in another day or maybe even tomorrow. I was told by nurse at oncology ward that most are only sick a few days but that some too can be sick for around 5 or 6 days. So you should be OK soon.

Blowthetrumpet, I did cold cap on 3rd June. It was my first chemo and she put it on my head and I burst into tears with the coldness. However in hindsight now, I think the whole hour beforehand with the nurse going through every single possible SE with me was really what made me cry. It was in my mind a waste of my time, I was tired too having not slept the night before. But it WAS cold as hell for first 10 mins, then it wears off totally. I had my mum with me throughout the treatment and she just kept talking to me about what was in the paper and we read magazines and books and I went online too and facebooked etc...so it all kept my mind off the cold. I am now 10 days in and still have hair. I am not sure when I will start to lose some...will let you know what happens to my hair. But it is worth the effort. There have been some excellent results and you can see some women talk about this on youtube. IN fact there is a thread here, where the women all post their before and after pics. They look amazing. It is very impressive. Even if it does not work, it is said to ensure that your hair grows back even faster. So all in all, it is worth doing.

Nextyear, I am serious, I am eating like a horse and I was one who refused steroids, so cannot even blame THAT for my greed. I am eating so much fruit and veg and then all my protein and then of course a wee treat here and there. Tomorrow is my day to cut down a tad and just eat for one!!!!

Hi Elocea, chemo is hard and it is hard for those around us too as they watch us look unwell and worry about things. But this is just a temporary state and we will all be back to normal soon enough, which is good for me because I was never normal before the chemo haha. But you are like me and have ONE under your belt now and nobody is taking that away from you. You have worled hard for that one treatment and now need to get the second one done as well as you did the first.

labscientistmom

Dollydimple: I like your picture, I can't wear orange on a healthy day, and you make it look beautiful! Your comments made me laugh, and I feel terrible today, bad diarrhea & stomach cramps out of the blue, been in bed & toilet most of the day, so thanks for the laugh, I really needed it. The immodium finally seems to be working. I will never forget to take my zofran at 6 hours on the dot again, cause I forgot last night, and woke up in wee hours with terrible pain. My college roomate sent me a bookmark that says, "pretending to be a normal person day after day is exhausting! " It talks about wild, wacky women, and how God made them cause he likes kazoos in his orchestra! Hope that good for a smile back!

Moondust, the day of infusion is day 1 at my infusion center. Just fyi.

Blessings to everyone!

Sadiemaebr

Good evening, my fellow friends! I so enjoy getting to know each of you and I'm glad I have some nice ladies along with me on this journey none of us wanted to take. I had my first treatment on 6/7/16. Thankfully, it wasn't nearly as bad as I had built it up in my mind. The hardest part was the SE from the Neulasta and Aleve seemed to help more than Motrin or Tylenol. I'll do that next time.

Everyone's sense of humor is refreshing. Thank you for the smiles.

We got this, ladies

Anonymous

Labscientist, I am so sorry to hear you have not been too well. I had cramps too last week, like severe period pain, which is ironic considering haha...In fact God was really a bugger with me and even decided to give me a period the week before my first infusion. He is taking the mickey now!! I have words with him daily and on that occasion, I was less than impressed with him. But I let him off, seeing as he created man, and it was SOME man who performed my operation!!! Labscientist, I get the feeling from reading your posts that you are indeed a wild woman. I read your husband is a teacher. What does he teach? I am also a teacher but in Scotland. I teach History. I do hope you have a good day tomorrow. How long are you out of chemo??? When was the treatment that made you feel this way? It's awful. Last week I sat with my head in a pink bucket. The bucket I use to wash the car with!!! Very posh and terribly classy.

I need someone to tell me to STOP touching my hair...I keep doing this. I am literally stroking my hair by the hour to see if it is still there. Oh my, it cannot be long til I start to see hairy pillows and blocked baths. I decided to not cut my hair at all and leave it as long as it was...that way I can achieve the best possible Donald Trump combover....haha none of you thought of that trick, now did you?

Dolly

NattyB

Dollydimple - that was a hilarious post - the pink bucket and Donald Trump combover cracked me up.

I'm nesting like crazy today preparing for C-day on Wednesday. Cleaned out my pantry and just had to laugh (even though I wanted to cry) about the money I have wasted and how many expired stuff was in there. The oldest was a can of beans from 2008 - crazy. Did the fridge today too so now at least its more hygienic lol. It kept me busy which was good but I'm kinda pooped. Hope it will help me sleep since that has not been happening in forever - even with ambien:(

HelenWNZ

the hair - to chop off or not to. I'm of two minds. It's kind of funny as it is a decision that I can make without it affecting my health yet I can't decide. Not ready for short cropped grey

Moondust

Welcome, Elocea! You are exactly right - only those of us going through chemo can understand what it is really like. Our local support only sees the face we allow them to see.

HelenWNZ, I had long hair and had it cut into a pixie cut. I was very apprehensive but everyone has loved it! It saves me so much time taking care of it, and it was easier to try on wigs. I bought one wig that is much like this new cut, in gray, and another in blond! The hair cut was almost as scary to me as the thought of it falling out, but I'm very happy with my new cut!

Dolly, your hair is nice and thick, so you may have good luck with the cold capping. But PLEASE, stop touching it! You will know soon enough if it is falling in out. In fact, I have heard the pubic hair goes first, so you might want to keep an eye down there .

NattyB, good job on the pantry purge and the fridge cleanout!

Labscientistmom, the bookmark saying made me laugh! Okay, I'm on board with counting infusion day as Day 1.

Sadiemaebr, my stomach still feels like I swallowed a rock sometimes but I haven't been nauseous and I don't have much other pain. As long as I don't get in trouble with infection, I might be just as well that my MO wouldn't give me Neulasta.

One day at a time, everyone. We are on our way!

revnet

Hello All,

This is my first post to the forums. I am scheduled to start TC on June 24th. Having port put in June 21st. I'll be having treatment in Chicago.

labscientistmom

Dollydimples: my husband is a high school history teacher too. He teaches AP US history, government, economics and regular US. history. Tomorrow is last official day with students, and he attends graduation on Tuesday evening.

Tomorrow is my premed steroid day 7 and Tuesday will be round 4 of weekly taxol. Hoping, hoping to feel bettter tomorrow. I had one day the first week that switched to diarrhea from constipation (I will NEVER complain about constipation again, never, never, never). I called the cancer center DR on call because the antidiarrha meds weren't working, and she said as long as i wasn't actually vomiting, and didn't have a fever, I didn't need to come see a DR. A combover sounds doable, please don't resort to yelling about everything like the Donald too, OK?

I have found myself touching my hair too, the waiting is a bummer. Lets call this the extreme, Men-in-Black witness protection program so we can blend in to society.

Scotland is beautiful, I hope to visit there someday. I love to read, and have read a LOT of novels based in England, Ireland, Wales and Scotland. blessings, Angela

krekre

Lasbscientist -- Just ordered Avoplex on Amazon Smile. And bought Sally Hansens Hard as Nails black nail polish and clear coat, plus their new gel line that doesn't require light to put on or anything special to take off. In my mind, if I apply fewer times (because it's chipping less), this will be a good thing. But then my girlfriend asked this, and I didn't know the answer. And since you have "scientist" in your username, maybe you do! *smile* Or maybe someone who is following this nail polish regime will know... Why would we put black nail polish on nails that we don't want to attract UV rays? I always thought black soaked in the sun, and that's why we didn't wear it in the summer.

Friday was a good day. I saw a therapist that specializes in patients who are going through medical crisis. I hired a team to clean my house... (who needs retirement savings if you won't be there to retire?) and saw my gastroenterologist, who said first week... spritz lemon and lime juice on everything. He said it will make all the difference.

Saturday I saw a movie and ate sushi. Felt normal for the first time since finding the lump.

And then I saw my MO shopping at Nordstrom Rack. He didn't recognize me. And I caught him off guard. He finally realized who I was and said I looked great. I threw my hands in the air and yelled (yelled, in the Nordstrom Rack) , "CUZ THE CRAZY HASN'T STARTED YET!"

Sigh. Been feeling low since then. I realized that the "crazy," the fear, the panic.. it's just below the surface. And no matter how much anti-diarrhea medicine, anti-constipation medicine, organic lemons, black nail polish, frozen peas, and Cardani Mod Slouchy Snood Caps for Women in Luxury Bamboo that I buy, it's always going to be there, just under the surface, until this chemo starts. And then it will reposition. And we'll start this dance again.