Starting Chemo, November 2013 Group
Comments
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Paulette, you are beautiful, with or without hair. You're one of those women who can ROCK any look you choose. Bask in it.
re: my heartburn from hell last night: I think I forgot to mention earlier that my chemo nurse from yesterday was the one who gave me the Neulasta shot today, so I was telling her that I'd first tried zantac and then prilosec, but that the zantac did nothing, and the prilosec helped but I still had a porcupine in my gullet this morning.
She said sometimes you might try going back to basics and have some plain old Maalox, a Tums, or a bit of pepto-bismol (especially if you were raised on one of those and psychologically BELIEVE in them. The mind is a powerful weapon!)
She was right. Felt a bit of the porcupine prickles again tonight, took a prilosec, and then a little while later, a nice dose of Maalox. Success! The porcupine is gone.
Also had a wonderful 3 hour nap this evening, and then watched Polar Express with my fabulous husband.
It has been a *wonderful* day. If I feel icky and not in the mood for turkey on Thursday, I will remember to be thankful for TODAY. -
Hi All....Im really tired tonite! I want to read all your post...and will likely after I fall asleep for like 20-30 min.......then Ill be up for the nite!
Hope yall enjoyed my night of de-hairing! It actually feels sooooooo much better than having the handfull at a time!!!....Gonna get my nightly infusion of fluids which will make me have so much better energy!!! When im done with that I m sure Ill feel like talking....maybe too much! Ill do some readiing to see how yall are.....for right now.....my fingers hurt and Im soooo tired! TTYL! -
Tums stopped working for me for heartburn years ago and I have been on nexium for years but last night and today it was Tums that did the trick for my heartburn too. I was surprised. -
That's awesome, wrenn! I think I'm going to keep that nurse's advice about going back to basics in mind for future discomforts as well, and maybe when the newer meds don't work so well, ask myself "What would my grandma have given me for this?" Of course, my grandma used to give me a mixture of honey, lemon, and a dash of whiskey for almost everything, from sore throats to menstrual cramps, and it always worked....probably because the dash of whiskey knocked me out. When you think about it though, that's not so different from a dose of Nyquil today, except it sure tasted a whole lot better than Nyquil! -
I just popped in to give a little encouragement. At this time last year I was getting scans to rule out mets to the bone. Thank God they didn't find any. They will repeat the scans next month.
I started chemo on Dec. 7 last year. AC X 4 every 3 weeks, then 12 weekly Taxol, followed by 30 rads.
My worst problem with AC was severe anemia. I felt faint and very weak, but was never nauseus.
To avoid mouth sore and thrush..try the following
Mix 1 TBS salt & 1 TBS baking soda in a quart of water. I kept mine in the bathroom and everytime I used the bathroom I rinsed with the mixture. Just swish it in your mouth for 10-20 seconds and spit it out. It works great.
To avoid thrush I took acidophilus or ate yogurt everyday.
Bone pain associated with Neulasta or neupogin
Buy the generic of Claritin (Loratidine). It's a fraction of the cost of Claritin. Start taking it the day before the shot and continue for several after. I take it now to combat the bone pain associated with arimidex.
Best wishes
Paula -
northwinds I ran a fever on day 5 after Neulasta, ok the next day though. -
2nd round of chemo tomorrow morning...not looking forward to the dry mouth again, constipation , the pain in my muscles and bones, or the steroid induced acne. I do hope if I do, that it's very mild. Hair is still falling out and wore my wig for the first time on Sunday to go to church. Getting it buzzed really soon, tired of hairy shower and floor!
Who is going this week for chemo? Good luck and happy thoughts to you! -
These hot flashes in the middle of the nights are annoying! Urgh! -
Lissy...I understand...oddly enough...since I began c/t and rads...the night sweats have radically reduced...mmmm....I can totally feel for you! They SUCK...have had them since teens with autonomic dysfunction...worse last few years with meno added. Hope you are well!!! -
Hi! all!! still havent read yalll chatties from yesterday!. Fell alsleep while hubby did my fluids last night...woke up around 4am...potty run...Yahooo! not normal for me! felt soooooooo goooooood! mmmmlol...lol...lol...tis around 530 now....cant focus on reading...have tried to but my brain is fudge...maybe my brains leaked out when we shaved my hair off!!! lol!....will spend some time later catching up with yall...in the mean time...my prayers are with each of you! I pray you alll have abundant peace in your hearts despite the storms raging in your lives! Huggs and special Love to each of you!
Later Gators!
BTW....curious.... where does everyone live!!!
I am in Ocala Fl....Lots of STORMS tonight!!!!!!!!!!!! dropping from 70s to 50s day....down to 30s at nite....sounds like a heat wave to some of you!!!!!!!!!!!!!
lol.....
huggs...nite....or rather Good morning!!!!!!!!!!!
T're!!!! -
Lissy - I'm going today like you. But it's my second AC. I've had a cold since Monday so I hope they let me have it anyways. Lot's of snow here in upstate NY, but the plow went by my house at 5am so we should be allright. We are taking the truck just in case. -
Hi. This is day 5 post FEC & 4 days post Neulasta. I woke up feeling normal this morning! Woot! No nausea, no aches. Craving fried egg & peanut butter. No sure which to eat first! Finally my appetite is back. I suspect my body wants protein. No mouth sores or hair loss yet.
You are all awesome here. Thanks for posting your stories. Helps to know what is coming next!! -
A TMI question. When should the red pee start? I'm not sure I'm drinking enough even though it seems I'm in the bathroom hourly.
A few word that may or may not help someone. Don't spend a lot of time on 'Why me". It is us, the why really doesn't matter. All that matters is to one day be "Not me'. And we will be.
Don't worry about plans or what you might miss. I'm having to postpone a lot of things. But it is a postponement not a cancelation. This is a year out of my life so I have a life to finish living. I will not mourn the things I miss. I will not cry about what might have been. I am actually planning an "I Won" party for next fall. And I WILL WIN. The trip out of the tunnel may be hard, but at least we are on the way out.
(None of this should keep us from some healthy whinning and complaining though. That always helps. LOL) -
@Paulette: I'm in North Carolina, the eastern part. Raining cats and dogs here today, but supposed to slack off later and turn cooler. My dogs will be glad. They hate the rain.
@wallymama : With that first round, I didn't exactly have red pee at all. I had slightly orange pee when I went while I was still hooked up to the chemo, and a bit darker orange later on that night, and light orange again the next morning, and then back to normal. The entire thing reminded me more of orange kool aid more than anything else.
At this point I can't say enough good things about my cancer center: Cancer Centers of North Carolina, centered in Raleigh, but with a few satellite offices in a few surrounding towns. We drive an hour each way to get to the main office (to see a particular oncologist that's been treating one member or another of my family for 20+ years, for both cancer and blood diseases) and it's worth every mile. I swear I think the people at this cancer center must read these boards, because they gave me pages upon pages of helpful tips, and a whole lot of them, including the Claritin, the magic mouthwash, the baking soda and salt thing, biotene for dry mouth, etc., were things I'd already seen here. I'm sure the cancer center here at my local hospital is fine---I had my BMX here, and I'll be returning here for rads since it's every day---but I am very glad I decided to drive the extra mile (or 50) to go to the oncologist/center I am going to. The thing I like best, I think, is the fact that it's a very welcoming and kind of *gentle* atmosphere, everyone there is very very kind, and they seem just as concerned about how I'm feeling--both mentally and physically---as they do with getting me through the long haul of treatment and hopefully keeping me cancer-free. That means a LOT right now.
How does everyone else feel like their medical providers are stacking up? Are most of them so helpful and kind or did I just get REALLY lucky with that? -
wally - my orange pee started already at the infusion center, it lasted for almost 3 days. Maybe you are drinking enough and that's why yours is not so noticeable?
My husband is still the one who is pondering "why me", I got that question answered as soon as the BRCA1 came back positive and have been at peace with it ever since. I am no longer wondering if I should have eaten better, exercised more or just lived a healthier live. -
Thank you for wanting me to stay! I feel very comfortable with and invested in this group.
Which doc orders the BRCA1 test? No one has mentioned that to me except my surgeon in passing. I've often wondered if extreme stress contributed to mine.
The blessing of the chemo delay is turning out to be a normal holiday with my kids. DD is home from school do its rare and precious time for the three of us (I'm a single mom). I think we all needed these 10 days before the next step in the journey. -
QuirkyGirl- my surgeon ordered it and put a rush on it since my mother had BC and an aunt had pancreas. You actually talk to a genetic counselor who takes your family history and figures out if you really need to test.
Lisa- I guess I'm kinda of lucky because we had several choices within a few minutes drive. The center I'm going to is great. The different doctors can all access my charts even though the are in different parts of town because they are all affiliated with the same hospital. And they are great. When I called yesterday about it didn't take 15 minutes for a call back. And when I asked about disability paper work it was have it faxed we'll take care of it.
Day 3 seems to be going much better than day 2. Fuzzy head nearly gone, headache gone. Very mild 'jumpy' stomach. Glad I totally missed the heartburn thing. -
Wally- I never had red pee either - but they told me to drink tons of water to flush it thru my system (which I did). Sounds like ur doing the same.
Quirky - my MO ordered my BRCA blood test (I had that in 07). Then this year I had the newer Bart test (which was a gargling mouthwash test) that tests for larger mutations in BRCA.
I never saw a geneticist but they have reco'd it with this reoccurrence.
Paulette - I live in...New Jersey very close to NYC.
Lisa - I am very lucky to live in an area where I too have many medical options I was less than happy with the bedside manner if my chemo nurses (treatment being done in NJ), but since this is the second time around for me it was not at all unfamiliar...I just went in with the lets just get this over with attitude... The group I'm dealing with at MSKCC (surgeries) is exceptionally amazing. -
Good morning!
Quirkygirl, I asked for it b/c I want to know if there's some explanation about why me. I'm waiting for insurance authorization now. At the time I had the genetic counseling, the counselor didn't know I'd already had my right breast removed prophylactically I think they rushed that appointment so I could make that choice if I wanted it. Without that misunderstanding, I don't know if I'd have had to fight to get the testing. There isn't much in my family history to suggest it will come back positive, but the mutation has to start with someone, right? And, yes, stay with us!
Wallymama, I'm close to Inks on the orange pee. It starts in the infusion center, but lasts only one more day or so for me. I had beets and asparagus with dinner last night, so it's all kinds of funcky today.
Lisa137, I'm so glad you brought up where we're being treated. I'd like to give a big out to the UC Davis Cancer Center in Sacramento. Without exception, they have been more thorough and caring than I ever would have imagined. They are a special type of people.
Lissy2304, I hope your chemo is going well! I had very random constipation for the last two days, so I can relate unfortunately! However, all is well this morning after 2 Ducosates yesterday and one this morning, I'm happy to report! I'm sticking with the Ducosate for the next few days while I'm taking Zofran post-infusion, just to make sure.
(While I'm on the TMI jag, I have had more gas than actual nausea with all this. For good or ill -- and you can all laugh -- I have managed to NEVER fart around my family my whole life. Maybe it stems back to the White Gloves and Party Manners class my mom took me to when I was kindergarten; I don't know. HOWEVER, the other day I was walking through the den -- just walking -- and then it happened. Of course, my 13-year-old son was in the room. He must have laughed for an hour. Thankfully, he hasn't shared the experience with his 17-year-old brother.)
On that note, have a great day everyone! -
Lisa 137!
That was perfect! I agree with everything you said...
I am going to ask about the klonipin...I am using the Ativan .5 usually in afternoon and then at night to sleep..and it works for me... but maybe that sounds good as well.
My hair isn't falling out yet and have to get bloodwork today...I seriously look like the new Charlie and chocolate factory johnny depp hair and I'm not as cute as he is!!! Plus I've gotten so lazy/tired I haven't worn makeup since infusion date! I guess I will need to - my husband told me to wear a hat! He cut my hair! It looks awful! I didn't care until now when I have to go somewhere! oh well, what am I gonna do?
I did order some scarves and turban things though, hoping they arrive soon.
Paulette! You started a day before me so I was gauging on your hair loss...I should be tomorrow, but no tingling or pain...has me worried it won't fall out at all! What a statement!
Wishing you all a great Thanksgiving Eve...and I LOVE reading all of your thoughts and dealings with this battle we all have!
It is very encouraging and helpful!
Hugs to all! -
Day 13 after my 1 CT and still at the hospital in isolation, having a fever and pain. Everyone is wearing masks, gowns and gloves, even though I don't have any signs of outside infection. My armpit and side near my surgery site hurt more now than right after the surgery itself and that scares the hell out of me.
Doctors don't seem to agree what it is. The MO that I saw yesterday thinks it is caused by an low grade infection that got out of control after chemo. Another MO said it may be linked to Neulasta, but will get back to me tomorrow, after he thinks it over. My white blood cells are normal. I have a higher lactic acid.
Well, there are no quick answers. -
Amazon warrior-
I am praying for you to help Dr's figure out what it is and get you treated and out of there!
Keep the faith! You will be OK!
xoooxooo -
Lisa: I have a wonderful group. Midwest Cancer Care in Overland Park, KS. I had a very rough time last week and they were very kind and easy to deal with.
Quirky girl: My MO had me meet with a genetics counselor in the office to assess whether the test is needed and if the insurance company will pay for it. Lots of things to take into account so ask your MO about it.
To all you ladies, please be sure to follow your doctor's instructions on when to call them. My MO has to call with a fever over 100.2. I woke up on Friday with 100.7 and made the call eve though it was fairly low. They had me come in and see the MO. He called for a culture on my port and a blood panel and wait for the results. When they came in the MO prescribed an antibiotic and told me that my WBC count was very low and if I didn't start to improve or I had any additional problems I should go directly to the ER. "Don't call me. Go to the ER because you will need to be hospitalized."
Not trying to scare anyone but this was certainly a wake up call for me. The chemo really knocks out your immune system so what was no big deal before can now become a major problem. Just want to keep us all out of the hospital.
I can also assure that if you are feeling down and weak and lame it will turn around. Had chemo on Nov 14th, felt fine the 1st 3 days and lousy for the next 7. I was worried I wouldn't spring back in time for the next treatment. Finally started getting better and today am excited about seeing family.
Take care everyone and have a wonderful Thanksgiving.
I am thankful for this group of caring women willing to share their ups and downs to help others. You all rock!!! -
Hugs to you AmazonWarrior!!!!!!! -
❤❤❤ Amazon Warrior!!! Thank you for letting us know how you are doing and please continue to keep us posted!!
For what it's worth, some people have very bad reactions to the shot. My boss couldn't tolerate it at all. -
It was my mom who went down the "why me" street at my diagnosis, and I had to talk her down. She had uterine cancer back in the 70s, and then had DCIS about 12 or 15 years ago, so when I was first diagnosed, she actually blamed herself. Of course, I didn't hear that from HER, I heard it from a mutual close friend, but once I'd gotten the heads-up on that, I got on the phone with my mom and explained to her that my cancer was ILC and has nothing whatsoever to do with her DCIS or her uterine cancer or anything else.
Now whether that is even remotely true or not, I have no idea, lol....the point is that it made my mom stop feeling like "OMG I gave you cancer." I believe that my onc. does want me to have the BRCA testing though, but you can bet I'm not going to tell my mother a thing about it!
As for me and the "why me" personally....nah. Why not me? I only know of a very few people who have made it to very old age without having some moderate to major health problems. I know a lady who has never had a drink of alcohol in her life that had to have a liver transplant due to cirrhosis. That was over 20 years ago, maybe 25, and she's doing just fine, but I'm sure she asked "why me?" on a regular basis. A friend of ours has a child who was four years old when he suddenly started having seizures, and I don't remember exactly what the diagnosis was, but he wound up needing brain surgery, and had a long recovery, but he's doing great now. Why him? I've known a few people who didn't even make it to anywhere near old age--some through their own bad life choices, some through accidents, and some ....well, who knows? Why them? I know a guy who won the lottery--not the BIG lottery, but enough to pay off all his debts including his mortgage and have some left over for doing fun stuff. He's a nice guy, but no paragon of virtue. Why him? An astounding number of animals are abused and abandoned and die every year, but last March we found a half-starved puppy walking up the road and we stopped and picked her up and brought her home and named her Scarlett (cuz she'll never go hungry again,) and now she weighs 35 pounds and is healthy as can be. Why her?
Life. That's why. Sometimes you can trace a reason for good things, bad things, and horrible things, happening, but lots and lots of times it just seems so....random. When my husband is looking for something; a lost sock or a particular cooking pan and can't find it, I always start looking in places it *should not* be, because as I say to him, "Everything has to be SOMEWHERE." Same principle. SOMETHING has to happen to everyone, good, and bad. This is what is currently happening to me. I don't think it will be the last thing to happen to me; by all indications, I'm not stage IV, and I hope I never go there, but hell, if I do, that STILL might not be that final thing that happens to me. I could still trip over a cat in the garage and whack my head on a concrete step and die there. You just never know.
So yeah. No "why me?" for me. "Why ANYONE?" maybe, but not, specifically, "Why me." I've had inexplicably wonderful things happen to me, too---blessed with the greatest family in the world (though they are a bit strange lol,) went through the first part of my life as a directionless gypsy with enough failed relationships that I could write a pretty fascinating book, and finally at 39 years old, I met and 6 years later married a REALLY incredible guy---10 years younger than me, a guy who who is that "nice guy" that your mother always tells you you should settle down with haha, responsible, honest, dependable, truly loves ME, and for the icing on the cake, his family--who shouldn't even have approved of me---they love me too, because I make HIM happy. And I absolutely adore him; we've been together 9 years now, and we get kidded about being "joined at the hip" and we look at each other with puppy dog eyes....and I NEVER thought I'd find that.
Why me? How did I get that lucky? Would I trade all that away in exchange for never having cancer? The two things are irrelevant to one another, but hell no, I would NOT trade that away. Life gives good and life gives bad, and I'll take them both, and be glad for the good and muddle through the bad as best as I can. -
Wow, Amazon, I hope they find out what is going on soon. How frustrating for you. You never know what's going to come up with this stuff.
So far, I am feeling very lucky. I injected myself with the Neulasta yesterday and didn't even feel it going in (thank you fat stomach). I had a great sleep (about 10 hours thanks to zopiclone) and I woke up with a few of my old arthritic aches which the steroids had made go away but nothing really bad or needing meds and I have no bone pain yet (haven't taken Claritin or anything else). I am happy to have taken the last of the steroids last night. I have no nausea but took the metoclopromide this morning just in case. If things continue like this I will be pleased but I am ready for it to change. I had gained 8lbs overnight the first night and assumed it was from the steroids but the nurse said it was from the chemo and might not go away. It is gone.
Crossing fingers that everyone else is having an ok day and that you get some answers today Amazon. Take care. -
Where are people ordering or finding nice scarves and turbans (and by "nice," I don't mean expensive. Just cute and colorful.) I just don't think I'm going to be a wig girl and I suspect that Scarlett the Dog would chew up my wigs anyway--I'm already down to one wearable pair of shoes, a questionable pair of boots, and a pair of hot pink flip flips because of her.
And if Scarlett didn't chew them up I'm fairly sure I'd find a cat curled up in the middle of my wig at some point--hopefully not while I was wearing it but...yeah. My life just wouldn't be a good fit for wigs. :P -
Amazon: Sending you hugs and good wishes and prayers, and extra mind zaps towards your doctors so that hopefully one will have that epiphany moment that will tell him how to fix you immediately. Am SO sorry you are going through this. You may be in isolation, but if you close your eyes, and let yourself imagine, at least one of us will be sitting right beside you, holding your hand, every minute of the day, til you are through this. We are there. -
Got my scarves, hats at 'hats with heart' ...they have hats scarves and I got a thing to go under them like a cushy hat so no itching...can't wait!
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