Starting Chemo in Nov 2016

amw5

I was having my nap / rest period at the time my Neulasta injector went off. I was hoping to hear the beeping, but I guess I was truly enjoying my nap.

I hope everyone is doing ok. (((hugs)))

SleeplessinCO

Pmevans50- My RN did say to cut the Gatorade with water, probably because it has so much sugar. She said pedialyte would actually be better.

LatinMixy

I am beginning Taxol on December 13. I was also told that it is about a 6hrs process. YUCK! I have an appointment with the pharmacist in two weeks to discuss the plan of action with my new meds. My PA said that Taxol is easier than AC. I really hope for that. My worse reaction besides fatigue is heartburn from the steroids.

My MO called today to say that two of my liver enzymes came back high. Anybody else experiencing this SE?

Hopfull2

hi ladies. I'm happy to see all of you are doing well with the SE. I have my 2nd infusion tomorrow. Today was the last of my 7 neupogen shot. (Instead of neulesta) and only SE wuththst was headaches. So farmy SE have been good .Hopefully tomorrow's infusion is the same. Hope everyone had a good thanksgiving.

Nfullblume

Patti, I'm doing dose dense Taxol, not weekly. And because Taxol is a taxane and can cause reactions, they push the infusions insanely slow. I'll get Benadryl, antinausea meds, and steroids first. Then a very slow drip on Taxol. They said it's a 4 hour injection. Add in labs, waiting, and a visit with the MO...voila 6 hours. They said if you have no reaction after the first 2, then it'll be much shorter.

Aldea13, I get the Emend pills for days 1-3. I have Alox and the "detha" steroid in my IV. The Emend is very expensive if insurance doesn't cover, Mine does cover it. It's by far the best anti-emetic out there. It borders on miraculous for me. I've had zero nausea for either of my injections. We will see if I'm as lucky with this one. My MO backed down the IV steroid so I wouldn't gain weight. I'm cool with that. 😁

Nanpop, a big kiss to you for saying that! My husband and I juice every day. All organic fruits and veggies. I think that's a big part of it. I have good energy and my skin tone has greatly improved. I lather my face daily with good moisturizers (free from the LGFB class). I have to laugh that body has probably not been this healthy in a long time. Leave it to me to be the most healthy during chemo. Only a scant adult beverage here and there (I was a pretty big wine drinker), tons more water than im used to, better spiritual life, requiring more rest for myself, and getting my vitamins from the juicing. I'm feeling pretty balanced. I stay active, 5,000 steps+ on weekend days. Hoping to keep that up! You can add baking soda to your mouth rinse, that helps. I do 1 cup warm water, 1/2 tsp salt, 1 tsp baking soda. So far no mouth issues for me. I have braces on too, so I wasn't really worried about it.

Marie, that's a good nap!!

Feeling pretty good tonight. Happy to only have 1 AC left!!

Nfullblume

Latinmxy, sounds like your liver may be taxed. Are you taking pain relievers? I don't think it's really surprising. These drugs are some bad mammajamma. Our poor livers have their work cut out for them. Let us know what they prescribe. Some natural stuff you could take is a no go while on chemo (St johns wort). I'minterested to see what they say.

Rachel

Hope88

Nfullblume, you look so great! Love the hat.

Twin, don't be surprised by weird things or SE that happen. You can probably find someone on these boards with similar SE, call your doctor, or research online for solutions.

Leslie, now may be a great time to start a new hobby you have always wanted to do. That may help lift your spirits. Also, are you taking anything for anxiety? Several people (including me) are taking Xanax or Ativan to help soothe and reduce stress. I also enjoy listening to uplifting or fastbeat music helps. Hope you are feeling better soon.

My aunt sent me this Bible verse and it really touched my heart: "Thou He slay me yet will I trust Him." Job 13:15.

Peace ladies

amw5

LatinMixy - My MO was telling me also that taxol is much easier than a/c. I have two a/c down, two a/c to go, and then four taxols to go. I also had indigestion / heartburn from the steroids two days last week (Rolaids and Mylanta helped me out).

Dianarose

Nanpop- you are exactly right. When I went in to have my port put in the surgeon went into my abdomen and got some good got some good samples to do so the chemo sensitivity testing. They do all kinds of tests which tells you which chemos are most likely to work and which ones are not. They take several weeks to come back so while waiting I was doing A/C and Taxol. Now we have the results back she took me off the A/c because it was not in the list to likely to work. Taxol was on it so I am staying it. Makes you wonder how many are on chemos that aren't even going to do anything but have horrible side effects. There are other chemos I can do that are on the most likely to work list but we are saving them to use down the road if needed. The Taxol is working because I can eat again after about 4 months of a liquid diet and after three roounds my tumor marker went from 198-162 👍. The test are very expensive but the company has financial aid and I don't have to pay for anything above what my insurance pays. They also tested my cancer against drugs that have not been FDA approved yet. So many choices and if needed she said she would create a clinical trial for me. I feel so much better knowing I am on the right chemo this time and have choices down the road if needed. I love this MO as she thinks outside the box.

LatinMixy

Thanks God I don't have any additional symptoms associated with this high level enzymes, just the blood work results. My PA check my liver for tenderness and it was fine. They are going to run an additional test this Friday, and another before my last AC. I will keep you ladies informed of the situation.

I had my double mastectomy before chemo, and I was popping Percocet as they were candies to manage pain. I did some internet research and I could cause this and also, the chemo, of course. I just hope its is not permanent liver damage or even worse, liver mets. I will ask my doctor we can do an ultrasound or pet scan at least discard mets. scary!

BG46TN

wow Dianarose! I have never heard of that type of testing to determine whether chemos would work! That is amazing!!! Where do you live and where are you getting treatment? Sounds so innovative!

I'm glad they are able to find something that works specifically for you!

Becky

javamama

Rachel, my nurse told me the dose dense taxol would be slow as well. Given over 4 to 5 hours. I think that's normal.

Anyone else having problems focusing on the good week? I can't seem to stay in the present. I keep thinking about and anticipating the future dose of chemo next week. Ugh. I hate that. I know it'll suck. But what sucks more is thinking about how much it'll suck... next week. Why can't chemo brain mean forgetting that? Instead of everything else? Sheesh.

I'm feeling pretty good right now. And I want to revel in THAT.

Also, my head is itching like crazy.

Nfullblume

Dianarose, I love all the new cutting edge stuff!

Latnmixy, I'll be praying for you. Good luck. You'd think if it had spread there, it would be painful to mash on. Stay positive. Mua!!

BG46TN

When did your hair start coming out? I have chemo #2 tomorrow and the past day or 2 I feel like every time I touch my hair I get a bunch out....not huge clumps but enough to freak me out UGH! so not looking forward to this part....I was able to feel ok and look ok with all this until now...I"m not ready to "look" like a cancer patient...

I have a wig all ready to go, but I dont think anything can prepare me....I think my husband may have to cut my hair very soon :-(

How did you guys get through this part?

2blessed2bestressed

Hello Ladies,

So much in the works on this thread! I'm glad to hear we're all doing a good job managing SEs. I'm on day 9 after round 1 of AC and doing well. I got my time of the month yesterday along with insane lower back pain. Took some ibuprofen and faired well. Thought is was from my period, but I see Annie had the same pain on day 8. So who really knows!!

Nfullblume - would you mind sharing what you are juicing. you really do look fab! I'm doing carrots, celery, beers with fresh ginger and turmeric once a day. But I feel like I should up my game? Would be curious to know what others are doing?

Leslie - I'm so sorry to hear you are feeling bummed. I fell into it a couple days ago too. I was just a bit emotional and anxious. It really sucked but thank God it passed. Talking it out with my sisters really helped figure out where it was coming from. I'm scared of this whole crazy process and I miss my normal life. Now I'm coping and trying to balance treatment and my real life. I'm thinking about you and hoping it isn't temporary!

BG - I'm going out wig shopping in a few. I feel so vane, but this is freaking me out too! I haven't cut yet, but my second treatment is on the 6th so I probably need to face the music on this one. 😝 I just keep saying to myself "no hair, don't care", but I do care. I feel your pain girl!

Side note - to all the gals chatting about electrolytes - My MO was concerned I'm over doing it on water and eliminating good potassium and electrolytes too. She sent me to the nutritionist who said keep up the water, and replenish your potassium and electrolytes with half a banana and nuts / nut butter once a day.

Praying for all of you strong warriors! This to shall pass!

2blessed2bestressed

Kelly - Happy Birthday! I hope your treatment and party are smooth sailing today! 🎉🎁

Annie16

BG46TN, my hair started coming out on day 13 after the first treatment. I am on a different chemo protocol - TC. It isn't completely gone yet, but I think I am getting a preview of my 90 year old self with thinning hair and receding hairline. It will all be gone by theatment #2 on Tuesday.

For those of you starting Taxol and hearing about longer infusion times, they do the same thing with Taxotere which is a 'cousin', if you will, of Taxol. They are concerned that you not have an allergic reaction (rare, but possible) so they drip it very slowly. Also, my MO recommended I take B6, which may possibly help with the neuropathy associated with these drugs. I did have a little problem with neuropathy (spongy feet and slightly numb fingertips), but it seems to have resolved.

aterry

Nanpop, 26 lbs is a lot. What does your MO say about that? I had bad mouth sores both rounds but this time I had Nystatin that kept fungal stuff in check and I felt better sooner.

amw5

Annie16 - My MO also recommended I take B6 to help with neuropathy associated with taxol.

amw5

Ladies - What has been your longest time getting the a/c chemotherapy? And those of you getting the taxol chemotherapy, what has been your longest time?

BG46TN

I've only had 1 so far (2nd tomorrow) and I was there for about 3 hours and 15 min....

aterry

LatinMixy, I'm sorry about the news regarding your colleague's wife. It is sad, and unfair, and tough; especially while you are dealing with this illness. I hope the fatigue is not cumulative. My MO said that most of the SE's are not. Sleeping is a bit of a problem. I'm usually fine for 3 hours but I get up several times for bathroom visits due to the water intake. After 4:00am it's hard to sleep soundly. It's so ironic that sleep is elusive when we need it the most.

SleeplessinCO

Kelly - Happy Birthday! I hope you have an easy day!

Amw5 - my AC this week took about 3 1/2 hours.

I feel your pain on the hair ladies. Mine started coming out on day 13. My hairdresser is going to buzz mine on Monday (when the salon is closed). She is the sweetest, and I think it will be easier than having my hubby do it. I've got the wig, hats and lots of scarves, but still not ready for that day. Between losing the breasts and hair, it's like losing your femininit, but I know a year from now, we'll be through all of this torture. Looking forward to the holidays in 2018 already.

Dianarose

Becky- I live in Maine and go to the New England Cancer Center. What is sad is I bet all Oncologist know about it

BG46TN

Question: How do I add a picture to my profile? I've looked all over and can't seem to figure it out :-)

thanks

Becky

Aldea13

Today was the day. My hair started coming out. Not drastically, but enough to make me decide to conquer this aspect of the cancer journey before it got worse. My best friend and fellow Veterinary colleague was kind enough to shave it for me at work. All of my coworkers stood by encouraging me through it.It wasn't as bad as I thought it would be. I just keep telling myself it will grow back with a vengeance!

I can't say enough how proud I am all of the ladies going through this process. We are unbelievably strong! Keep fighting! Much love to all. (Side note: my song of choice through this was Rise by Katie Perry. I listen to it to pump me up)

fromtritotam

Thanks for the birthday wishes! I hope everyone is doing well today and managing the SEs!

Yeah for today- AC 3 is done. The network was down at the hospital so everything was super slow. Actual infusion time was about 3 hours. They ran the cytoxan slow again today (45 min vs 30) and it seems to be helping with the headache.

Aldea- love the buzz cut!
Rachel- love the hat!

Stay strong ladies and be kind to yourselves! I will say an extra prayer for those of us who are having anxiety and feeling down. Sometimes I think the mental part is harder than the physical part of treatment.

marigoldgirl

Hello everyone. Had my second AC yesterday. Everything went smooth and i felt great yesterday and still today. If the pattern follows last treatment I should feel bad tomorrow and this weekend. My hair is almost gone. It was strong until day 14 then that evening it started falling out every time I touched it. Today my mom took scissors to it because we did not have any clippers. I have a few very bald spots it is so weird. My scalp is very sensitive. My soft hat helps. Even thought I don't post much I do read everyday and love to hear others stories.

Nanpop

Hello Ladies,

I just had chemo #2. AC. I am exhausted unlike my first chemo. My stomach feels like it's burning. Did anyone have that?

I had emend in IV so I don't think it's nausea. It's hard to tell. I took 2 steroids in the morning and need to take 2 more tonight. I am drinking a lot. So hopefully, I can get this out of my body.

How's everyone doing

Nfullblume

2blessedtobestressed, we use papayas, pineapple, pears, blueberries, raspberries, mangos, ginger, oranges, apples, and grapefruits. Depending on if my stomach is acidic, we use papayas and mangos, they are alkaline. We use ginger every time and are going to start with turmeric this weekend. Amazing research on that root! I love grapefruit, apple, and ginger. But I'm careful with grapefruit if I feel like my mouth is going to get sore.

Becky my hair came out the worst around day 17-19. I buzzed it on day 17, and that really helped with the mess. Not much left now! I feel like what's left is holding on pretty tight. Eyebrows are kicking butt though!! (Silver lining!)