Starting Chemo December 2015

NewDay123

Thanks Twirp26. It's good these forums are here. Don't have to feel so alone.

mvspaulding

Newday123, that is the good thing about this group. None of us are alone and everyone supports! I have had a bad time with this last treatment too. Have had a low grade fever all day but not high enough to call MO. I am just tired of not feeling good! Just have to look forward to the good days and the day when you are done with it all!

Welcome chinookmom. I had the red bumpy head problem and went through a round of antibiotics with it. It's now coming back a little but I think I can just treat with topical cream. Thanks for the tips.

Glad to hear you didn't have to replace your expander Proctor. I swear these things are awful. Like two baseballs sitting on your chest.

Thanks for everyone's response on the lower dosage. I didn't think much about it until someone asked me if that would affect my end date. Then the worrying started to creep in.

Twirp I still have the annoying stubble too. I don't think I'm ever going to be smooth bald. Makes me wonder if I needed to shave it all the way.

Tomorrow is another day closer to the end! :

LiLNutmeg

Morning ladies,

Does anyone have issues with a sore bottom during chemo, and if so .. what are your remedies.   Not to be too graphic, however I tend to get diarrhea the first few days after my chemo infusion, followed by the most painful constipated/diarrhea combo.   It's more than active hemmoroids ... it feels like childbirth each time I go.   I've tried tucks, Prep H, witch hazel, Epsom salt baths, Immodium just so I don't go .. but it it really knocking the stuffing out of me ... any suggestions would be appreciated.

brithael

Sounds like you're doing all the right things, I'd talk to your doctor about it.

I totally understand that constipated/diarrhea combo thing - you'd think they'd work together to make things normal. That's one of my worst things after chemo - first constipation, then diarrhea.

chinacat

LiLNutmeg I am having the same problem, minus the diarrhea. I am taking a stool softener and Metamucil. The Metamucil really helps. I've never had these issues prior to chemo so I don't have anything to compare it to but childbirth is close to accurate. I've had this problem since before Christmas so I don't expect it to resolve anytime soon:( good luck!

Anonymous

I use Ultimate Flora probiotics. Although it's not an instant fix I truly believe it helped me get back to my normal. I take the fizzy drink you mix with water kind. It's not bad tasting at all. Good luck you guys.

PezGal

LiLNutmeg - so strange you'd mention that - having the same problem here. Back a few weeks ago when they put me in the hospital for a few days I was also having butt problems. I could just be standing there, not even going to the bathroom, and get this crazy pain coming from my rear end. I mentioned this in the hospital so I ended up having not one, but two different doctors look at my butt. Humility was gone a long time ago I guess... No obvious problems, but had a CT scan to make sure this wasn't my source of infection that was causing my fever. It wasn't. I think we decided it was an anal fissure over a hemorrhoid (TMI: I swear it feels like pooping glass shards). The drs advice was to take daily stool softener and fiber supplements (or eat more fiber), do sitz baths and use lidocaine on it, and have patience with time. I asked her, and I think she appreciated my creativity, if I could use the emla cream I use on my port pre-transfusion and she said yes. Numb that sucker up. After about a week it went away. Last Tuesday I forgot to take the stool softener... guess who's back One dang day missed! But, this past weekend was my "low white blood count - slow to repair the body" weekend and I made it through so I'm on the up and up! I hope. Good luck toy you..... it SUCKS!

Also of interesting news in the world of side effects I think my finger/foot pain was due to my antibiotic. Dr PezGal on duty. Wish I could remember its long name... levofloxacin? Last Thursday night I was actually crying cause it hurt too much to walk. Talked to the nurse on Friday and they were like, "well, if its a side effect of AC chemo, which is unusual, there's nothing we can do about it, and its unusual side effect for the antibiotic so keep taking that." I found that strange as I was looking at the 8 pages of side effects from this antibiotic and it specifically said it can cause neuropathy (ie hand foot pain) and if so contact dr immediately as it can become permanent. The nurse/dr suggested I take oxycodone till I saw then next (this Thursday). Ehh, no. I have a 3 year old and a job, I can't be walking around stoned for 6 days. I told them ok, sure.... but stopped the antibiotic that night. Within 24 hrs my feet were better, 48 hrs my hands were better. Still a little pain on my pointer finger nails today, but 1000x better. SMH.

lawyer180 - I think some dr's do blood draws to look for tumor markers. I hear more about these tumor markers for ovarian cancer on a facebook group I'm part of, but I figure its the same(ish?). If your tumor markers were to spike it wold be a definite indication something was going on. I think the problem arises in that it's not reliable on slow progression or certain individuals. Sometimes tumor markers can be low or slowly rising and something could be going on unnoticed. This is another example of how everyone doctors are so different. Some dr's will do blood test for tumor markers, others will do scans, and others will do the "wait till you have symptoms" route. I think it depends a lot on you as the patient and what you want to do. Your comfort level. More scans can mean more radiation or whatever. I'm not sure yet on my dr's preference, but I think I'll opt for more testing. I know Her2+ has an affinity for the central nervous system. I think brain mets is not something you want to sit on and wait for symptoms to show up. One lesion vs. 5 lesions might have different treatments (?). Yeah, Stage 4 is Stage 4, but catching it early can make a difference. You have to be an advocate for yourself and what you want, and don't be bullied (or strongly discouraged) out of it. I read on some page here a gal with brain mets said if you want these tests push for it. If they say no, lie about symptoms (make up symptoms) so they will do the test. Not the most honest route, but do what you've gotta do for you and your peace of mind.

Speaking of peace of mind... I keep having these flashes, moments, when I forget that I have cancer. This morning, driving my son to daycare, singing a song, completely forgot. I say moments because they're quite rare, and usually very quickly, like a slap in the face, I remind myself that I have this wretched disease and who knows the future. That moment that passed felt like euphoria, and then its gone. Then, for some strange reason, I feel guilty about not stewing on it or something and need to scour the internet to remind myself to be scared. My husband wants to buy a house. Originally he said this fall, but I think I've put him off for another year. This would be the first house we've ever owned (long term renters). I, we, want a place for our boy to call his own. If I were to die he wouldn't be able to afford the house on one income. Ugh. Do I say "F**k you cancer!" and look into buying a house or play it safe till I pass some of those major mile stones (2 yrs, 5 yrs, 10 yrs). Husband already said (pre cancer chit chat) that if anything ever happened to me he'd move to Ohio to be closer to my parents, for the kids sake. So I guess he'd sell the newly bought house. I don't know. How do we make future plans? How do we not?? Confused...

redrock75

pezgal-- such hard questions with no easy answers. 😔 I try to always assume I'm not gonna die no matter what. I have to think that way or I wouldn't be able to get out of bed.

I'm back on my old pal Levaquin for the week, day 7 blood draw has me like critically low in WBC, ANC, and platelets and that's with neulasta and also with 2 reductions in my AC dose. Oh well--this coming Monday is my LAST AC and I can't be happier to kiss the syringes of that nasty bitch goodbye--though I'm thankful for it and for the job it's done killing my tumor and saving my life.

Hope everyone has as decent a Monday as possible!

Sammy3

PezGirl - I think we SHOULD be able to forget about it!!! It sucks that we are in the thick of it right now, but I honestly believe that I will be OK, and you should too! The treatments we are getting are good - they do their jobs. I am triple positive, and I know over on the triple positive group there are plenty of people 10+ years out. It was also my understanding that that Herceptin/Perjeta really levels the playing field on Her2+ cancers. Now, I am not a doctor of course, but what I mean is yes 20 years or so ago it might have been horrible to be Her2+. But with the targeted therapies, it seems to level the playing field.

I'm with RedRock - my plan is to live until at least 80

mvspaulding

I am with you all, I have never let myself think for one moment that I wouldn't get better and live a long happy life. You can't let that doubt creep in, we are all fighters and we are fighting this damn disease and going to beat it!

I was able to work from home today thank God, but I have been having a lot of pain still on my left side where my expander is. I immediately started thinking of you Proctor and what you went through with your abcess. Did you go to your plastic surgeon with the pain or your MO? I am hoping it is still just pain from the fill and sitting and working on the computer for 8 hours aggravated it.

sorry about your problems Nutmeg, I start with constipation after my treatment and then go to diarrhea. I have to take stool softener right away or it gets real painful. Yours sounds a little more severe and I would definitely talk to your Dr about it.

proctor1725

Myspaulding - I was told by my chemo center, always call them first. They evaluated and then sent me to Plastic Surgeon for evaluation. They were VERY good at working together and talked several times back and forth during the week until things were finally diagnosed. Look for swelling and redness. If any, you might want to call. Good luck! I still have my drain in - just what I wanted for another 3-4 days. Yipee! Thinking of you all!

Twirp26

Pezgal, I am in agreement with everyone. I don't let my brain go to the death word. It's not an option. PLUS, if you think of it this way, nobody is garenteed a tomorrow. I could get hit by a bus or choke on a carrot tomorrow. Life is precious for sure. I wouldn't put it on hold for this or anything. Live your life to the fullest!! I say buy a house! Enjoy it and your family! Live large! Sure, I need reminders on my down days but we are all human. I think with the advancements in treatments, you will be around for years to come! BELIEVE IT! Enjoy life

lawyer180

PezGirl--thanks for the explanation about blood tests/scans, I appreciate it! Going for AC #3 tomorrow!

stotamom

I too have had my chemo reduced due to my wbc. I had it decreased for my 3rd dose and had to skip a week I go Wednesday for blood work and hope things look better than they did after #2. I'll tell you round 3 about knocked me on my butt, I never felt so sick. I'm not looking forward to #4 but I am at the same time as it will be my last dose of AC

I think I might have a UTI and I'm dealing with some mouth sores. I can't wait to feel human again. As far as the whole death thing, I was fine until a schoolmate told my daughter that she hoped I died. I have to tell you it hit pretty hard and now my mind wanders there frequently. The what-if's make me crazy. I think having BC is hard mentally.

Twirp26

stotamom, your daughters class mate needs a throat punching!!!! Who says that????? Don't let some idiot bring thoughts to your head. It absolutely sucks we all have this but breast cancer is one of the most curable cancers. We can beat this!!! This fight is not only physical, it is a mental challange. Stay strong, stay positive and when you don't feel strong or positive, come on here, you all lift me up when I need it. I hope I can do the same

jodes001

Oh my, what a deep conversation!!

I for one don't ever think about death. I'm not sure why, I just don't feel like that's in the cards for me, at least right now. And they caught my cancer early...and got clean margins at surgery. I'm sorry that some of you struggle with that

I have been extremely emotional the last 3 days. Very irritable, on edge, crying when the wind blows. I'm feeling scared to return to work in a few weeks, down on myself for gaining a couple pounds...blah blah you know what I mean. Then having to start thinking about radiation 5 days a week while working....eh

Today was Taxol #8. I always feel good after treatment, and the next couple days. I'm also turning 50 on Wednesday.That is bittersweet.....I'm trying to NOT dwell on the negative....and my wonderful daughter is throwing me a party Saturday night....I hope I'm feeling ok then.....

Is anyone's hair growing in white???

hugs

Jodi

Anonymous

Went to my "Look Good Feel Better" meeting tonight, 1 1/2 hours, just 4 of us there. I was not extremely enthused about going but ended up having a really good time! We giggled a lot, shared photos, exposed our bald heads, and talked about our treatments. Very nice bunch of ladies. The make up is really nice and I love the higher end moisturizer. I'd bet my goodies were close to $200. Learned a few things, like do not use a nail polish with hardener due to the formaldehyde, but I've been fairly adept with make up for over 45 years. Mostly it was just great to share time with others who "get it." If you get a chance to go...go!

mvspaulding

Stotamom, that makes me so angry that someone could say that to your daughter!! What kind of monster would say that? Grrrr!

This is so hard for us and for our families without having to deal with mean people. That's just unbelievable.

Glad you had a fun time at your session Birdue, they do give lots of goodies

Lyra10

Evening ladies! I have only a couple of complaints after #3...well technically it was before but there will apparently be no "pre-menopause" for this girl...1 week early and 7 days long! Probably the worst period in history. But only SE I'm having is heartburn so I shall shut the hell up!

Ladies you are fighting an intense battle. Put your chin up because attitude is half the battle! You are and will win this fight!

Thank you all for posting and BTW Go Broncos!

chinookmom

LiLNutmeg~ Hello. Yes, too have had bottom problems. I use Cottonelle Fresh Care Flushable Wipes, everytime whether things are normal, fast or slow.. I also got a prescription for Protozone-HC 2.5% Cream. Once the wipes are clean, (also every time) I apply some of the cream to the cloth and apply that way. Still sometimes feels like i'm passing glass shards but calms things down rather quickly. For constipation i've taken Senokot-S at night a few times (dosage says take 2, but sometimes i only take 1) & for diarrhea i take Immodium (both of these drugs were on my hand out of approved medication for side effects from my oncologist. http://www.dana-farber.org/Health-Library/Managing-chemotherapy-induced-diarrhea.aspx Also try that BRAT diet for diarrhea & drink enough fluids supplementing water such as Pedialyte can help replace lost electrolytes as well as fluids. I do get some rectal bleeding too every time from the process, but am on a daily self injected blood thinner due a blood clot at developed in my shoulder where my left arm chemo port feeds through.

PezGal~Levofloxacin (and ciprofloxacin- which i have had problems with) are the two main fluoroquinolones that are first-line treatments for many bacterial infections. Fluoroquinolones can cause Musculoskeletal symptoms in some patients (tendon ruptures, tendonitis, weakness, and joint swelling). http://www.drugwatch.com/cipro-levaquin-avelox/, http://livertox.nih.gov/Fluoroquinolones.htm I've actually added Cipro to my list of medications i'm allergic to as my joint pain lasted weeks last time i took it, but did completely go away.

stotamom~ I'm so sorry that both your daughter and ultimately you had to hear something so terrible from some bully classmate. I'm sure it was very upsetting but please know that Targeted Therapies Herceptin (trastuzumab) & Perjeta (pertuzumab) are doing amazing things for HER2+ breast cancer. I'm also HER2+ and am very optimistic of how well these therapies work.

Birdie56~ I'm glad to hear that the "Look Good Feel Better" class was so much fun & helpful. I think the next one that is somewhat close to me is February 10th. I'm hoping i there is still room in that class. I still have most of my eyebrows and eyelashes (for now), but my skin varies from blotchy, dry and broken out depending on where i am after chemo. I've been trying the Lindi moisturizers and today a lovely woman in my breast cancer support group uses Moo Goo and loves it.

jodes001~ Sorry to hear you've been feeling so emotional. Its totally understandable with all that we are dealing with and i always find milestone birthdays can bring on mixed emotions. Glad you have a birthday party to look forward to this weekend. Happy early birthday!

Twirp26~ Well said! thank you!

Sammy3

Lyra - love the jersey. I wear #18 here, but I am from Indy, so basically he is always a Colt to me! His play last Sunday reminded me of his good ole days with the Colts, not the QB New England was expecting Most of Indiana roots for the Broncos because everyone loves Peyton so much. The place where I get my infusions overlooks the Peyton Manning Childrens Hospital. I always make sure to get the window seat so I have sunshine

LiLNutmeg

Afternoon Ladies;

Thank you all for your suggestions on my sore bottom issue;  I've got so much in me right now I think I've confused my system;   sitz baths, tramadol, Imodium, buscapan;    Today's morning routine was somewhat better ... pretty bad when you're hanging on for dear life to the sink  for fear of pain and passing out.  Again - your suggestions were helpful and today has been better.

I'm day 7 out from my 3rd round of FEC;  every cycle has been different - more tired this round and ended up in emerg day 4 with very low counts even with the Neulasta shot on day 2.   My blood sugar spiked to 28 .. they figure due to the steroids post infusion - it's taking its sweet time to come down.

Another week .. another day closer to ending chemo ... and here I thought losing my hair would be the worst part .. LOL .. little did I know!

redrock75

I'm right there with you on the pooping situation Lilnutmeg. It's a freaking nightmare. I've also found that at least for me, even though I get neulasta my counts still bottom out and they don't start to come back until about day 10 after my infusion. I've been on antibiotics my off week every week and came close to being hospitalized with an ANC of 0.1 after the first infusion. Neulasta has worked in that I'm always good for my next infusion (I'm on dose-dense AC) but I still go dangerously low every time

Nebraska917

I just had my 3rd of 4 rounds of TC yesterday. It hit me alot faster this time. I usually feel fine on tuesday and then horrible Wednesday and thursday. But I'm just tired. Could be much worse. My white blood count was the lowest it's been as well, but I guess they said that's normal as it wears your system down the farther along you get.

I'm really wanting a new wig. I don't like the first one I got. Luckily insurance should be paying for that one at least. I will just have to look around. Buying online scares me incase the color or something doesn't look right!

KHinMD

I went in for treatment 3 of 6 last Monday and the side effects I am used to continue to lessen each time. However, I now have to deal with SEs I'm not aware of like elevated liver enzymes and anemia (and occasional heart palpations it can bring about). The nurses and doctor have put me at ease that everything will return to normal once treatment ends, just like they had been before starting treatment.

Undergoing chemo during the winter seemed like a positive with the option of wearing a winter hat to cover baldness, but I am now dealing with a major negative - the weather. Over the weekend my region was hit with over 2 feet of snow. My weekly doc appointment to check my levels was cancelled yesterday (I was able to reschedule for today) and work has been closed the past 2 days. I decided to stay with my parents before the blizzard hit. I should be able to return home tomorrow. Such a mess. I feel sorry for those who go to my infusion center who had to reschedule their treatments due to the weather.

LiLNutmeg - I deal with the same issue, but it seems to clear up on its own. I am okay right now and my treatment was 8 days ago. I'm expecting it to come back after the next treatment, but it doesn't seem to last more than a few days.

PezGal - I am usually positive that after all is said and done I will come out on top, but I do worry about the other outcome. I think it's natural to consider both outcomes, but I don't let the negative thoughts get the upper hand and think of things I plan to do in the future as if I have a clean bill of health. Another negative I think about is recurrence, whether it be in 5 years or 50, but even then I'm hopeful that the treatment options will be even better.

jodes001 - My hair isn't growing in yet. I was dealing with premature graying around the temples when I had hair, so I'm worried that it will be gray or white when it starts to come in. One good thing about having a wig - no gray. Since I might not be on here to post tomorrow, Happy Birthday! Hope you are feeling good for the party.

Nebraska917 - Hang in there, One more to go.

mvspaulding

Nebraska, we are on the same schedule and this 3rd round has seemed to be harder for me too. Emotionally and physically.

Lyra, love the jersey, and Yes Sammie I am from IN and even though I am a Bengals fan because I am closer to Cincy than Indy, I have always always loved Peyton. I couldn't have been happier about them kicking the Patriots out of the playoffs.

I am going to attempt to go back to the office tomorrow. I am lucky I have been able to work from home last couple days. The thought of wearing a wig for the whole day makes me cringe, kind of gotten used to the soft sleep hat around the house.

puremalarkey

hey y'all, I also had treatment 3 of 4 today. Last round was 75% easier than the first. The dr today said the bone pain from the nuelasta was because of the rapid growth in the bone marrow. Now that it's grown I should expect about the same SE as the last time. I sure hope he's right.

Here's to everybody having a good week

mvspaulding

So for the last three days I have had a low grade fever off and on. My MO always says call for fever 100.5 or more. So I haven't called. I usually just take Tylenol and it will go back down. Tonight 99.8 has been the highest. I am supposed to go into my office tomorrow. Just hate this because I don't know what is best. And its just enough for me to feel puny.

Wenrisa

has anyone had experience with itchy palms? It's just started in the past day or so and it's annoying as heck. Everyone keeps telling me it's from dry skin cuz of the cold weather buts that's not what it feels like... I'm almost two weeks out from my last infusion of CMF as I go again on Thursday. I've decided to try allergy meds just in case but would an allergic reaction show up two weeks later after the 4th infusion???

Twirp26

Wenrisa, have you been using a bunch of waterless hand sanitizer? I had severely itchy palms when I was pregnant from using that stuff way too much. Just a thought. It could be the chemo of course but I know I had that problem before with over use of hand sanitizer