Anyone Starting Chemo in June 2016

lilyp6

OK, One more post, and then no more playing around! This is Ms. Lily in the front. Her neighbor boyfriend, Sparky, is in the background. My wonderful neighbor took her in yesterday so I could recover from my SE's.

Coffee-lover

I'm in for FB. Thanks for starting it!

So my SE seem odd today. Nausea is almost gone (weird but very thankful) but now I'm shaky and really tired. I didn't take a compazine but did take Ativan. Could that be it?

Eating every two hours. Drinking lots of water.

Hope everyone's doing well - it's July 1 and we made it through June!

Coffee-lover

Pepper - i just friend requested. Valerie Arneson. Thanks.

Cody3110

Pepper I just friend requested and sent you a PM. Thank you.

SthrnYankee

Labscientistmom- I think it's the steroid causing my issues also. I woke up this morning feeling like my normal self, ate a little & took my meds....not long after I started with the weak, shaky feeling, mind fog stuff....I think it is the steroid as its the only thing i take in the morning right now. They have me taking 1 pill a day for the first 3 days after chemo & then dropping to 1/2 a pill for 2 days & then stopping. We will see what happens in a few days when I'm able to stop it. Yes boxers are the sweetest dogs ever! Jackson is the brown one, he is 4 & very spoiled, Toby is the white one, he is 2 & rotten! They are such awesome family members!

Pepper43- pepper is precious! I just love puppy dog faces! Today is day 4 after chemo for me & I felt like myself when I woke up....until I took my steroid, I think that's what is causing alot of my issues. We will see 2 more days of taking half a pill & then I stop. I love the idea of the FB group...messaged & friend requested you there!

Cody3110- Gidget is adorable! Some of the nice ladies here recommended the L-glutamine also. I will be asking my MO about it for Taxol. I just do the know how I could even try to work right now with the brain fog & shaky weak feeling. So weird...

Heathet- I was told about possible UTI's before chemo. I haven't noticed any burning but I have noticed a very strong smell, medicinal almost....seems to lessen as the day goes by but it is there. I am drinking as much water as I can...sometimes my tummy doesn't allow it though. Ughh. I would call the MO office & ask, if you already have an antibiotic they may just have you go ahead & take it. Burning is usually a sign of UTI. Hope you can get it taken care of soon!

Dolly- I'm excited for you for your date! Something to look forward to is always good!

----something odd I have noticed the past 2 days is a phlegm in my throat, I have to clear my throat numerous times to get it out...yuck...coughing it up sometimes also...anyone else having this problem? So weird. I'm day 4 out from my 1st AC & so far it's not as bad as I expected it to be...but not as good as I wished it to be. It could definitely be worse that is for sure....so glad that it isn't!

NattyB

Hi all - quick drive by until I have time to focus on this site which is way more important than stupid work:) Thank you Pepper for the FB add - you are fast, dont worry to the others about secret groups, I do a few others - not about anything illegal or anything, lol - noone can see them! Sore throat has been a constant since #2 for me, burning when i pee, check. I'll have to look back and see who asked about the Elastogel mittens, jury is still out but more mobility and comfort than baggies of ice tied to me. Be back in a bit:)

Jojok

Dolly- thanks for asking my infusion went uneventful yesterday. No reactions to anything or side effects yet. I've been taking my Compazine just in case so we'll see. Not sure I want to risk getting nauseous. Next one scheduled for July 21

Acie

Thanks for the clarifications on the MOs, SEs and such.

Yesterday was rough due to achiness from the neulasta, still some today but pains meds and Tylenol helping.Not as burpy and bubbly today.I feel ok today but am curious how tomorrow will be without Zofran and steroids.

The good news is I finally stayed asleep until 6:30AM instead of waking at 3:00AM.I was so happy this morning to get to sleep most of the night!

I have been able to get a walk in most days, usually only a mile or two but its way better than nothing.Its summer in Texas so I have to watch the heat but want to walk when I feel up to it. How is everyone else doing exercise-wise?

Bobbsbgone – love the kitty photo.Too cute!

WUnderlust – thanks for the pep talk.Good to know I have triple-neg friend here.I believe labscientistmom is TN too.I am still trying to fully understand TN. When did your treatments start and what is your plan? I have 4 AC every 2 weeks then 12 taxol weekly. I will be in chemo until mid-november. Sure seems like a long time.

Welcome Jojok and Joey. The first one is hard because its scary. I feel so much better now that I know what to expect next time.

Cody - On ports, I am a fan (they told me I would love it and I thought they were crazy – cannot say I LOVE it yet, but…).Its way less painful than an IV, and its nice to have the tube to your chest instead of an arm for freedom of movement etc. .I used the cream 45 minutes prior and put saran wrap over it so it would not wipe off. After that they also used the freezing spray and honestly I don't think I felt anything when they accessed it. Weird. I hope I am so lucky the other 15 times I have to go do that!

Love the pet photos.Will share one another time.

I might be interested in FB, but would want it totally closed as I have decided to not share my cancer with everyone on FB. What are the detes?

DistrictGirl

Hi everyone - checking in quickly! Had my first infusion on Monday - officially have made it through the week!

Man, these anti-nausea meds really do a number on my brain and make it hard for me to concentrate on anything for more than 9 seconds! I'd love to write to each one of you but unfortunately it's a bit hard for my brain to keep up right now so I will just say that I'm sending you all love and prayers and it's nice to hear how all of you are doing!

This week really wiped me out - I'm doing a lot better today (less anti nausea meds and a bit more mental clarity!) but MAN does my stomach hurt!! I am on TCHP and was supposed to get diarrhea from the Perjeta so I wasn't too worried about constipation, but it's now Friday and the diarrhea never came! I think the anti-nausea meds completely counteracted it and backed me up, which is why my stomach hurts so much. Anyone else who's on TCHP experience anything similar?

I'm in for a private Facebook group - Pepper, I sent you a private message. May be easier to follow along

pepper43

Acie- it's better than closed. It's secret. That means only those invited/in the group even know of its existence. If you weren't in it, you wouldn't even know it was on Facebook (not searchable, posts don't show up in feed etc).

Moondust

DistrictGirl, I'm on the TC part of what you are getting, and my stomach does hurt sometimes for the first week. It seems to be a little better this time around. Small frequent meal-snacks seem to help. I'd rather put up with the ache if it doesn't get too bad, than to take the anti-nausea all the time. Plus, I tried one anti-nausea and it didn't seem to help the stomach ache. I have never felt nauseous yet. My brain is not great, but I don't feel spaced out and it may just be my normal CRS kicking in

Acie, just follow Pepper's link in her post to send her a friend request and a PM about who you are.

I suggest that we still post all the chemo questions and experiences here so that all will benefit. Also so I don't have to look in two places to cover all the bases! I am already spending too much time at the computer.

Jojok, glad the infusion went well.

Coffee-lover, I'm glad you are getting a handle on your SE's.

Love all the pet photos and I'll post some when I find time. Two dogs, seven cats, 20 sheep, 50+ chickens. Be warned!

Half the year is already gone! I hope that by the end of the year, most or all of us will be done and can move on to a more normal life!!

bbbb

Heathet - YES I have noticed the same bathroom issue and I am feeling it is just all those meds working their way out too!

Pepper - Yes I will post a pic of my TALL son! He is coming home from college for his 24th birthday tomorrow and I will get a pic of us together. Regarding yearly mammograms and being angry about diagnosis. I too had no risk factors, no family history, nursed three children, etc. so I was shocked (and a bit angry that my life was being hijacked!) when I was diagnosed. I then was remorseful because I had not gotten my mammogram the previous year - Just a scheduling mix up and I never called to reschedule. I "worried" over that for a long time wondering if things would have been different had it been caught a year earlier. My MO told me to NOT ever look back at what I could've, should've done, it is what it is, we can't change the past but we can change the future! Then I had a friend diagnosed with Stage III in June. She had her regular, yearly mammogram in December and it was clear but she felt a lump in June and it turned out to be 6 cm! That made me realize that this breast cancer is a strange beast and what I really need to focus on is fighting it with everything I have, not wondering if somehow I failed - no failures here - only FIGHTERS!

Having a much better day today - just tired - slept TWO hours this morning and awoke to my husband smiling at me (smirking really!) asking if I'm getting enough rest! He was trying to be funny and bless his heart he is trying to so hard to be supportive and doing everything he can to make things easier on me. I often forget what he must be feeling, I know he worries, and he is not a "talky" kind of guy. So I will accept a little funning on my behalf (I was sprawled on the recliner sleeping with my mouth open after just having a good's night sleep (apparently my sleep has NOT been affected by SE's!) I am extremely hungry today - weird??

Hope everyone is having a good Friday and yes, we have made it through June and a good weekend awaits!

Love all the pics of everyone's furry little babies! They are so cute! Murray would love to pose for a feline furry baby pic if I can just get myself together! I did manage to wash sheets and put ALL the laundry away today - feel like superwoman!

Jojok

What s the FB page called

boobsBgone

bbbb - a few days after my 1st tx, i too felt very hungry. limited on what my stomach would not reject with pain and cramps, but plain noodles, rice and soup were my go to foods for those next few days. surprisingly i did well with pizza too!

I am too tired all the time, i do my best to listen to what my body wants. i am usually in bed by 8pm, where 'normal' a few months ago was midnight. such a huge change for me.

Moondust: cannot wait to see the sheep!

one month down, 5 tx to go and I am ready to be done with this!

Coffee-lover

this is what I'm missing as a result of BC. Yep, I'm supposed to be on safari in Tanzania at this moment. Just got this and had to share.

Anonymous

Awwww Coffeelover, Tanzania is too hot anyhoos and and you'd most likely be bored...(my attempt to make you feel better).

Never mind NEXT year!

D

DistrictGirl

Coffee-lover - Maybe that will just need to be your reward when you're through will all of this!! A wonderful thing to look forward to and will be even sweeter when you are able to go!

(Also, you can take comfort in the fact you're not on one of those bumpy safari trucks with all of the havoc this chemo is wreaking on the belly!! lol)

Coffee-lover

Dolly and districtgirl - so right. I'd have chum everywhere! We'd be popular with the wildlife

We are dreaming of an equally exotic vacation when this is over. Bora Bora, Dominican republic or new Zealand. Maybe Tasmania.

Moondust

I am missing the Walker's Haute Route in Switzerland next month. Chamonix to Zermatt in the Alps. But I'll plan on it next year! And Scotland, of course!

Cody3110

coffee-lover and moondust I know exactly how you feel. I also had a vacation planned which I had to cancel after my diagnosis. We were going to scuba in Cayman Brac. But we can now look forward to a celebratory vacation when we are done. This is a picture I took last year in Cayman Brac

Coffee-lover

Cody - that looks amazing. Next year for sure. And Moondust - I've always wanted to see Chamonix. I can't wait for the pics!

We are still scheduled to go fishing in Alaska in August. It's a primitive place and I'll have to take precautions. We've gone every August for 20 years. I'm not missing that one. We are almost out of salmon!

Anonymous

I had no holidays planned for this year. I am very efficient that way haha...But it is a bummer that my school holidays are NOW and I am not getting the rest or pleasure that I have worked all year for.

It is sad that so many of you have had nice holidays planned and then had to cancel because of nasty cancer.

Coffeelover your destinations sound amazing and very adventurous. I have always wanted to see Alaska. I am currently obsessed with the TV programme Life Below Zero...have you seen it? It is so interesting. Where do you stay? What sorts of things do you do there?

Cody, so sorry to hear that you had to cancel but glad you see that next year is not long away and you will be celebrating the next time you are on holiday.

Moondust, Scotland is a definite for you young lady! If you are a walker and hiker then you will love the Highlands. Lots of great places to walk there. Mind you bring a woolly vest...it IS Scotland.

D

labscientistmom

Pepper: I am not on FB, but my teacher husband is. I will have him help me connect with you when he gets home from watching his Yankees play baseball in San Diego. Thanks for putting that together for us. I will post you again when he gets home with connection. Thanks for explaining it well how it works and such. I have a tall son too, he's 12 1/2 and 5'6" - gonna give your son's a run for their money, Pepper and boobsBgone.

Dollydimples: I do 6 more weeks of weekly taxol. Followed by 4 rounds every 2 week dose dense Adriamycin/Cytoxan. Will get neulasta on day after with that. My fingers are not as sore/numb so far, so YAY it appears the glutamine supplement is working!! I really would love to have you visit, you get here, and we will make it happen! Our budget is doing ok, thank God for good HMO insurance with nice copays, gotta wait for authorizations, and waiting is a bummer, but it pays off. Also I am thankful to live in a state that pays disability, although it only pays 60% of what I was making. My accrued paid time off and sick pay will run out in about 2 weeks. He will start teaching at community college and high school again in middle of August. RE: tumor markers, mine were checked before chemo started, and now 6 weeks into it.

The problems with eating have been with less healthy stuff actually, could NOT eat a cupcake again, oh wow, my stomach said, NO way. Need to stay away from sugar anyway, so no cakes or donuts either. Also spicy or onions or peppery stuff is a no go for me. I havn't noticed a smell from cleaning stuff, but I mostly use unscented sensative skin stuff anyway. My dinner just came, tonight is one of our mealtrain days, so I am going to go eat chicken. Hope to check in with you again later, and comment on other posts too.

A

Eleanora23

GOOD WEBSITE FOR CHEMO DRUG AND SUPPLEMENT INTERACTION INFO?

Nice to join the ladies on this thread too. I am on the TAXOL thread, having done 3 of 12 infusions thus far, and just my first herceptin of what is supposed to be one year. I am look for information on supplemental - vitamins, minerals, other (for ex: green tea) during chemo. MY MO doesn't spent much time with me and her nurse might have briefly mentioned supplements during our super speedy speed through chemo class (it was really just an informed consent session, not a class). I really don't want to do this wrong, so I decided to stop most supplements during chemo 12 weeks, including V D3 and Vit C, which I feel odd about.

Where is a good source of what to take/ not take during particular chemo regimens? I am continuing Vit B complex and B6 and also my L Glutamine high dosage due to the risks of Peripheral neuropathy with Taxol.

Eleanora23

I hope your date goes well Dolly !

Coffee-lover

Dolly - we go to Kodiak and stay in an abandoned cannery that our guide has converted to a camp. It's very rustic and beautiful. We spend most of our time on the boat fishing for salmon and halibut. We see eagles, puffins and loads of other birds. We watch the otters play right outside the door. We watch the whales come in and all the other fish scatter. There are foxes that come up to the door begging. It's such an adventure.

Ive never seen the show you asked about. I certainly don't want to be there when it's that cold. I'm bundled up in August. This year, I probably won't be able to do as much but I'm hoping to relax and enjoy the time.

lilyp6

Coffee-lover, Kodiak sounds incredible. We used to know someone who fished for Halibut and shared his flash frozen catch. It was the best fish ever.

Our travel plans were so minimal-unusual for us. Our last two big trips were Japan and Vietnam. All we were doing was going to Paso Robles for the Mid State Fair and wine tasting. I'm still disappointed, but trying to think of the day this is behind us all, and we're out and about all over the world again.

labscientistmom

Eleanora23: there is a listing of supplement suggestions from various folks oncologists on the previous pages here. Krekre is seeing a naturopath soon, we are hoping she shares info with us. My MO is ok with my multivitamin, fiber gummies with B12, Ca/Mg/Zi w/Vit D and a probiotic. I take melatonin at bedtime, along with several other folks on this thread. The biggie is not to take anything that's antioxident, as you don't want to protect any cancer cells from chemo or rads killing effects.

To everyone: thanks for the vacation pics! I really enjoyed them. Here's to next summer with cancer treatment behind us and a new destination ahead! goodnight all, blessings and hugs. here's a Hawaiian sunset pic I took on Kauai a few summers ago.

pepper43

Got to reveal some pretty deep family drama over on FB group this morning (secrecy can be a very good thing). I'm with Moondust on keeping chemo questions and the like here. I'm thinking of subtitling our secret group "Sisterhood of the Traveling IVs." If you still want in, just scroll up to my post with my fb link, friend request me and message me who you are and I'll add you. Again it's a secret group so no one but members even know it exists or who's in it. There are 13 there now! I may post a file with info on our diagnoses' and treatment plans. And maybe start a Secret Sister program where we can send each other funny cards or something.

Dealing with major sleep issues. Trouble getting to, waking multiple times per night to urinate and waking super early. This hasn't been a problem when I've had a nap or two throughout the day but no naps yesterday. I'm thinking today might be a loaf around kind of day for me. Though SCORE for getting a walk in early.

Also having sinus discomfort and pain in lower back/pelvis/hips. How long does Neulasta related bone pain last? Should I be taking Claritin up until my next infusion? Had to ask my daughter's MineCraft camp leader to push up her group's presentation yesterday because sitting on the chair was starting to really bother me.

So I confirmed with my MO that my treatment should last a year. Anyone else here in group who'll be kicking cancer's booty through next summer?

On bright side, I've been really impressed with my Oncology's office Patient Financial Counseling. She's gotten us approved for Patient Advocate Foundation Co-Pay Relief for chemo costs that should bring our out of pocket maximum for this year down a bit- and she'll be the one filing everything for us. I just have to keep tabs too. She's still waiting on word of Neulasta grants. It's a comfort to have one less thing to deal with and bonus sauce, that we're able to get some help.

Anyone going out for fireworks? We typically stay home but husband is thinking we should go out and watch some this year. I'm just afraid of being in crowds given chemo.

Heathet

Pepper - I'll have a year of treatment. Five rounds of chemo left - TCH and then a year of just the Herceptin. Then I'll most likely be taking tamoxifen for 5 years. After chemo I have 5 weeks of radiation.