Jan 2008--Ain't it Great?
Comments
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Hi Carol -- You might try Biotene mouthwash and toothpaste for the dry mouth. It was recommended by the nurse in the onc's office, so I have stocked up. Someone on the Her2/Nue+ board said she had her best dental checkup ever after chemo because she was using so much Biotene.
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Cathy, been using the Biotene, maybe I need to swish in the middle of the night as well, thanks for the tip though ... Carol
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Okay, your probably tired of seeing this golfer lady this morning, but I forgot someone ...
Diane B, see the CMF posting, I babbled on there as well.
Carol
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LJ13 - I feel for you. I was originally supposed to be on that regime. It looks tough.
D1 - Glad you are feeling better today! Thanks for the info. I was afraid it would change the effectiveness. I am hoping for a reaction free infusion this week.
Is Anzumet a steroid also?golfer - I took xanax with my first round the day before and the day of and they said it was fine. I thought I wouldn't need it this time, but now I'm thinking I will. For the first week and a half after my first round I felt like I lived in the desert!
Well, the hair has started coming out in clumps. I think I will have to have it shaved tonight or tomorrow.
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Okay, I definitely have too much time on my hands today, cleaned out my bra drawer, no need for those babies any more, and decided to change pics again, I enjoy seeing your faces, gives this chat line that much more personalization. And I'd have to say we discuss the most personal stuff here!!! The pic is from down in Vegas in June, finally married my sweety after being together 10 years. Got married in Hawaiin shirts and shorts, and our friends joined us with "the look"!.
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golfer779 - you're spunky today! glad to see it.
talked to my onc today and it's a definite, will be starting thurs and it will be AC every 2 wks x 4 then taxotere every 3 wks x 4. will have to go back and reread everyone on that tx's experiences. it's so hard to keep up! feel like i'm so far behind but since there are a few of us starting this week, we can be anxious together.
gotta go chauffeur kids, check back on everyone later. -
Good evening,bad
I was down and sick yesterday with a bad migraine.
Katy L -thanks for the info on the calcium I was wondering how much we should take daily.
Sista2-Yea my bro is 1 of a kind I will work on pics in the next few days. The hair dresser I went to works beside her home I was the last 1 of the day so it was just my daughters,brother and me.
CarolC-I am so sorry to hear your news. A dear friend of mine once did a fund raiser based on the lottery # for a BC friend who was a single mother with a deadbeat ex not paying child support. She was able to raise over 1,000.00 for her.
Julie-Love the boob story about your dh.
Sherry-Sounds like you had a great baldness party.
D1,Diana-Hope your feeling better I will be on round #2 of taxtore on Friday I am now a litter worried about it.
AZDonna-Hugs going out to you
Pa -lady I take my steroids as follows-
2 Night before
2 Morning of
Then get some in port before
Well wishes to all
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Other than taking almost six hours to receive treatment, things went great today. They had to keep flushing the port because the drip was going too slowly. I have a bit of soreness around the port, probably from the needle being in so long, but other than that feel fine. We'll see if I get hit by the SE express over the next few days. I'm planning on going to Utah on Friday for a four-day weekend, but it's mostly a snowboarding trip for my son. I can sit in the hotel and do nothing if need be and I've told him he better plan on carrying all the luggage if he expects me to go. I have friends in the area and they'll come visit me if I don't feel like going out.
I was told the anti-nausea drug that I was given in the port today lasts about four days, so I shouldn't have problems with that. I'm becoming a true believer in better living through chemistry!
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PALady-I took two 4mg. Dacadron twice a day the day before, the day of and the day after chemo. However, my onc had me taper down for 2 days after that, one tablet am, one pm, and the following am. Said it was so I wouldn't "crash." Seemed to work, too.
Maz -
Good morning Jewels
For the jewels that are taking TC for there treatment I have a few questions....
They did give me the steroid to take the day before, day of chemo and the day after..like 2 pills every 12 hours. I have read they will keep you awake and hyper....
Since some of you had a reaction to the taxatore(t) for the drip going to fast, can i tell them i want a slow drip?
what day did the se's start for you? I chose to do on friday so I can try to recoup for the weekend and make a attempt to work on monday.
what is the worst se you have gotten so far?
Will i be out of it for a few days?
Just getting ready for infusion..and i want all the drugs they can give me so i don't get sick, that is my worse nightmare. I know to eat small meals during the day( i learned that from the boards here)
when did the metallic taste in the mouth show up?
My AND scar is over 6"long and really sore the pass few days like the shoulder and arm are really tight and i was able to dry myself off when i came out of the shower, but now i can't stretch that far, maybe i over did it at work. The connected my scar to the SNB scar...D1 has frankenboob, i have frankenarmpit!!! lol
Hope everyone is well.
hugs to all!! xxoo
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Good morning Jewels,
I'm so enjoying reading all of your stories & experiences. In the interest of time needed to get ready to go back to work; I'll just again let you know that this sharing of all of our experiences and all of the great advice is truly inspiring.
I didn't post much yesterday because I was physically and emotionally exhausted. I spent alot of time on the phone getting alot accomplished, considering it was a national holiday and banks were closed.
However just to update you, I was able to get someone sympathetic from Wells Fargo Mortgage on the phone who walked through the budget that I sent (but they hadn't yet received). He was able to set me up on a repayment plan over the next six months and stop any kind of foreclosure process. That was a big relief - at least for now.
I also spoke to the Social Work office at UNMC and they are sending me a letter to share with creditors as to how my cancer has had an impact on my financial earnings and for how much longer treatment is scheduled to last. She tells me that this is usually enough to encourage even utilities and credit card companies to work with people. She's also sending a form for me to complete for the hospital co-pays & deductibles to be set up on a payment plan.
I called Roche re. the Xeloda and I was told right off the bat that I don't qualify for their assistance program because I make too much money! Funny, if I make too much money how I'm getting behind on everything, but oh well.
My group insurance company was closed so I couldn't check the status; but I did speak with my onco and agreed that if they don't cover the Xeloda after the appeal process, I will switch to Cytoxan - so my next treatment which is scheduled for 02/07 will probably be TC - continuing my Taxotere of course. He is actually glad that I'm willing to do the Cytoxan because not only does he doubt they're going to end up covering the Xeloda, but he feels the TC regimend has better proven results for triple negative bc than the Xeloda - I was the one who wanted the Xeloda. At this point - I just want to get on with the show and get it behind me as we all do. Any advice about Cytoxan symptoms are welcome - sounds like nausea will be a part of it. Also, is it always necessary to get neulesta afterwards?
Last but not least, I ordered my wig yesterday.... after all of this I was too exhausted to call any other creditors but want to do that before I'm late on anything. I am feeling so much better that at least I'm being proactive - I was so depressed over the weekend that I couldn't think straight. Thank you Jewels! You're all in my thoughts.
And Carol - I thank you for your sweet generosity.
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Hello JJs! Hope everyone is doing well. I finally had some time to read over posts again and pay attention-- today the dh is back to work and the kids are at preschool. Peace and quiet reigns!
CarolC: Any news from your cancer center yet? Been thinking of you as I totally understand your plight...
Cathy-CA: Glad to hear #1 went OK. How ya doin' today??
PALady: My steroid is Decadron. I take 2 pills (4mg each) twice a day the day before, day of, day after treatment. It's the only one I get. It gave me some upset/acidy stomach which I took Zantac for. It did not give me insomnia that I noticed and I took it 12 hrs. apart (7A and 7P).
AZ Donna: How's the tooth??
Carol (golfer): Love the pic. Some day I'll figure out how to do that. And about the miralax, I totally plan on getting it for my next round. I could just kick myself for not using it since I prescribe it all the time and know how well it works. Duh! About dry mouth... I have been doing baking soda mouth rinses every 3 hrs. during the daytime and I use Biotene toothpaste and mouthrinse morning and night. This really seems to be helping me so far (knock on wood!). If I wake up at night I do an extra baking soda rinse.
Sista2: I see D1 has your treatment updated already, I got it on my list now, too. Good luck Thursday!
Vettegal: Calm down, girl! You sound like me a week ago
. We'll get you through this. I am doing the same TC every 3 weeks 4 times like you. First of all, remember everyone is different in when they will get SEs, what type they'll get, and how it will be for them. I went into round one telling myself "mind over matter"... I know I'll get some SE, but I'll be fine and will manage whatever comes along. If things get too bad, I planned to call my onc, day or night, so I wouldn't suffer (my "safety net"). I mentally "allowed" myself 2 bad days and then decided I'd get back up again (so far I really think I had only one "bad" day). Since everyone seems to feel bad around day 3-4, I decided if I was going to feel bad, that's when I would "allow" it-- this is all such a mental mindgame, remember. Ya gotta psych yourself up for success, girl! OK, so having said that... to answer your specfic questions--- I take the same steroid you are taking, and had no problems sleeping. But others here have offered some great advice that if you DO have trouble, try taking the second steoird of the day earlier in the afternoon. Taxotere-- any RN worth her license should be giving the first drip of taxotere slowly (and any competent doc, for that matter) automatically. This is a standard for that drug. Mine was given very slowly for about a half hour, then increased 2 times until done. It took about 1 1/2 hrs. for the taxotere infusion alone. An RN sat by me the first 1/2 hour to monitor me and check my BP. She told me to tell her immediately if I had any problems (I didn't have any). They said when I do round 2, they'll only do 2 speeds, unless I have a problem. As a nurse I'll tell you that most allergic reactions to drugs DO NOT happen the first time a drug is introduced, b/c the body does not usually recognize the drug as "foreign" until it "meets" it again (like on the second or third time). It is rare and they should be monitoring you anyway each time! D1's situation was scary, but remember, statistically there is always someone who will have a reaction (sorry D1 it was you, ya know what I mean, right?). Side Effects-- ***Remember, everyone's different! But most of us will not squeak by without some . Just tell yourself, you will be fine, regardless of what comes along. Have someone with you for a few days just in case-- it calmed me a lot to know someone (my mom and DH) was just there "in case" my head popped off or I puked like the Exorcist! I also told myself that if round one went badly, it would only be one time of hell b/c I won't let it happen again with round 2. I had some SEs the next day (I've kept a log) like constipation, lack of appetite, and food not tasting right. Day 2 I felt a little tired and the constipation continued, I also felt hot and cold off and on and had a runny nose. Day 3 for me was the worst so far-- that's when the body aches hit me and the fatigue was worst. But I still managed to get up, shower, and put on clean clothes. Overall I'll say the worst SE for me so far was the constipation. Everything else was not pleasant, but not unbearable. I did not throw up once (this was my biggest fear, too). I've had some weird feelings yesterday and today in my pinkie fingers (probably the neuropathy that taxotere can cause), but it's annoying, not painful. Metallic taste: I had a weird metal/dirt taste during the cytoxan infusion. I sucked on ice and it was barely noticable then. The strange food tastes started the next day. Chocolate tastes like crap to me now (so jealous of D1 and her choc. cake!). Food in general just doesn't taste "right". Water is OK if it's cold. I hope this helps you a little. We're all here for you and I'm sure others will chime in with their experiences and words of wisdom as the day goes on. You just sound so much like how I felt, too I wanted to answer a lot for you (and we're doing the same stuff). -
CarolC: We must've been posting around the same time. So happy to read your news. I am doing the TC now. They give me Aloxi the day of chemo for the nausea (it lasts for 3 days)-- I didn't throw up once. And I have a weak stomach. Steroids like decadron also help combat nausea if you're given one. I do not get the Neu-nasty. My TC is every 3 weeks. My onc only gives it standard to the DD people (every 2 weeks' tx) b/c they do not have enough time to recoup the low counts. He said he'll only use it for me if my counts to do come back up, which he says happens about 40% of the time. At least I got through round 1 without it
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Hi JJ,
KathyL I think it's great your little girl is trying to take care of you. That was great that you talked to her and helped her to understand that you will be going thru some changes, so she won't be upset.
DianeB Sorry about the blood clot, I have a picc line and every Thursday I have to have it flushed and the bandage change and they always inject a blood thinner Heperen (sp) in my picc line to prevent blood clots. I assumed all the jewells with ports also got the blood thinner. I'm glad you are well.
Kimberly I'm sorry if I made you lose your post
this is one busy site. that's great your not losing your hair. Carol You have a new Avitar, very nice. I'm trying to get a decent looking picture of myself. I don't like any of the pix that has been taken, I'm going to try again this afternoon. With no hair my face looks so fat to me.
Palady I take my decadron's only in the morning. The first day of chemo treatment I take 3 all at once. Then day 2, 3, 4, I had 2 pills at once in the morning only. I have to say, I still can't sleep at night. And I only take a Emend once a day. Try to get some rest.
D1 Glad you are resting and hopefully coming out of the se's some.
I hope everyone who had their treatments last week is feeling better.
I'm sending good vibes to everyone that is starting their treatments this week. I'm also under the weather with a cold.
Hugs,
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Good Morning Jewels-
D1/OLE- I hope PT went well. I told my 24 year old, who called as he was casting his absentee ballot for Mom's opinion on a Prop. or two, that my hair was having a caucus right now deciding which delegates would leap off my head first- the greys or the dark ash blond? He cracked up. I haven't lost my hair in clumps yet...it feels thinner, so I'm thinking it's sneaking off my head when I'm not looking. ;-).
Carol- Nice picture!! I'm with you on the ovary removal thing. Whatever it takes to knock out the estrogen. My onc. nurse told me I would go into a permanent chemopause with my treatment and that I would lose all my hair. Guess she's been doing this long enough to know...and I'm totally OK with not having a period again. I'm glad you liked the SHEROES term. I like it too because in cases like the ones I mentioned in my earlier post, it fits. That's why I wear my SuperGirl cape...all SHEROES need one...that and a chemotini glass. ;-) I tried the Miralax last night and it worked pretty darn well. No discomfort at all. I did the Sahara Desert thing...Biotene worked for me a little, but just a few days ago I noticed I'm not feeling like that anymore...still swishing am and pm, but it's gone now...could be the consistant use of Biotene, or that the se has gone away...who knows. Some foods still taste funny, but I can drink a cup of coffee now...whoohoo.
PALady- Clumps of hair coming out certainly would send me to get the balditude shave, but like I just told Carol...hasn't happened yet. Hmmm, maybe it's coming.
Sista- Well, at least you've got a plan now. Good luck on Thursday. The pre-chemo jitters are much worse than the actual event- that not knowing thing. Once you've got one round down, you'll have a good compass reading and know your direction so to speak. Hang in there- we're here for you.
WVgirl- Oh man, a migrain on top of chemobrain. I'm so sorry to hear that you had to go through that.
Good luck with round #2.
CathyCa- 6 hours! Wow. Glad you're doing well. Your trip to Utah sounds like a good chance to spend time with your son- who of course will be your own personal sherpa carrying the luggage in gratitude for taking him snowboarding. Hopefully, the se's won't keep you in the hotel room the whole time and that you have a chance to visit with your friends. Does your hotel have roomservice? That will be a big help if you can't get yourself out to a meal.
Maz- Good to see your post, but you didn't tell us how you are. How are you doing?
Vettegal- KathyL - I'm appointing her our official researcher/librarian, since she's got so much knowledge to share with us about drugs, dosages, se's etc... (You ROCK Kathy) - gave you tons of great information. I'd like to add that I was given Valium for muscle spasm contol if I needed it after my bilat surgery. I took one every night and it knocked me out even though I took my Decodron 12 hours apart like most everyone on this thread seems to be doing. I also had a decodron boost through my port before my chemo started.
If you're prepared for the possible se's, you can prevent or at least keep at bay the ones that fancy your company. I'd suggest taking the Miralax the day before and follow up each day with that as the anti-nausea meds can cause constipation, I hear. That may keep you from going through birthing a cinder block as many of us experienced before knowing better. You'll be fine...just take a deep breath and know that you can do this thing!!!!
SheShe- Oh, you didn't cause me to lose my post. I had to delete because I was a dork and missed a whole page of the JJ's posts for some reason. I had to read those first and then start again. It was so not your fault...I just added at the bottom that you must have posted at the same time because I didn't want you to feel I hadn't read your post.
CarolC- Glad to hear you made progress with the mortgage company and all. Also pleased to hear that you've got a good back up plan, and that your doctor feels confident that Cytoxen is the better choice anyway. The American Cancer Society has wigs for free or low cost...did you check them out?
Well, gals. Have a great day.
SIS Kimberly -
What a group we are!
CarolC--I am so thankful you're getting your situation under control. I was talking to my mom about you and she suggested that some of these guys who are financing their own presidential campaigns should get their egos outta their asses and put their money toward establishing foundations to help folks through med crises! Shoot, we'd probably instantly elect someone president who did that!!!
How ya doin' Maz? Good to see your post.
Oh Vettegal, it must be awful to be one of the last to start! You feel just like we all felt, please don't worry. KathyL is a superstud with all her comments, read them carefully. I will echo that days 3-4 are the worst. (My infusion is on Wed., so Sat/Sun are bad for me.) The day after you'll probably feel great (steroids). I can do all my normal activities that day. By the evening of the second day you'll start to wind down (I think its the steroids wearing off). But you're not totally incompacitated. I'm able to get around (VERY slowly) and COULD do things like get something to eat or do laundry, but if there's someone here, I just rest up and let them do it (I didn't do that very well the first tx and I think that's why I ended up with the spasms). You've gotten lots of great advice from all of us regarding what you should have on hand to alleviate the se's, so of all of us, you'll probably be the best prepared! And I do agree with KathyL, this really is a head game. The tricky part for me has been when to overpower with the head and when to listen to my body. I think I've done a much better job of it this time. You'll figure out your balance--not to worry.
Also agree with KathyL on the Taxotere drip. My first time, the nurse set me up for a 1 1/2 hour drip and sat with me for the first 15-20 mins. to monitor. We chatted about what se's to expect and how to combat them to pass the time. I think since I sailed thru that one, they were more cavalier with me the second time (and I like Kathy's theory on why the reaction the 2nd time--makes sense to me). (Oh, and now that it's behind me, I'm more than happy to take the bad reaction hit for the Jewels!!!) Fortunately, my dh was right there and quickly reacted (as did the nurses). It was dramatic, but I recovered quite quickly and we got on with the infusion, which dripped more slowly (speeding up as I was having no additional reaction). Your nurses will watch you--they don't want you to be uncomfortable or have bad reactions. These are some of the best nurses I've ever encountered and I know you'll feel the same. (Aside, of course, of our nursing Jewels here, who are THE BEST!)
Get yourself ginger ale, ginger tea, etc. to combat the tasteless water thing (kicks in about day 3 for me and lasts about 5 days). The Biotene morning and night and baking soda rinses are right on for the mouthsores, if you get those. I added the baking soda rinses this time and have been much, much better on that score. Have small, easy to get snacks (I like bananas and granola bars) for those times when you start to feel a little uggy in the tummy and it'll help chase it away. Hydrate, hydrate, hydrate!!! Be sure to take all your prescribed meds! My sister was here on Sat. and was telling me that she just barfed her way through chemo and I'm sitting there saying, didn't they give you drugs? She said she couldn't seem to remember to take them, so she skipped them all the time. And once you get behind--Katie bar the bathroom door! Take your meds.
You're just gonna shine like the jewel you are. And when you feel like shit, come on by for a data dump--there's always someone to catch you! (I think we're all learning that.) You're beating cancer, girl!! FUBC!!!!!
SIS Kimberly--oh yeah, the hair. I'll tell you, its actually liberating to get rid of it. I notice that my stubbly bits are dark roots and found that the ones with gray at the root were the ones that fell out most quickly before the buzz. You'll have to let us know who wins your caucus. Oh, and the stubbly bits do still come out--when I rub my head with the towel after my shower there are all kinds of "whiskers" in the towel. Not sure if we ever get the smooth pate, but a bit of stubble helps to act like velcro for the doo-rags!
Good job on the first tx, CathyCA, have a great time in Utah! Take your pharmacy!
Okay, I need to get myself around for my physical therapy appt. I'm really excited about it! I'll report later/tomorrow.
D1
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So far today I'm still feeling great. I went to the gym to work out and have been making sure to drink lots of fluids. The local grocery chain had a special on Smart Water (has electrolytes) and Vitamin Water (has flavor and some calories plus vitamins). It was on sale for $1 a bottle and if you bought eight bottles, you received a free lift ticket for our local resort. With several school holidays and spring break coming up, I bought eight bottles every time I got near the store, so have a big supply.
I go back for the Neulasta shot this afternoon, so took my Claritin this morning. This afternoon is the last of the steroids until next round, so we'll see if my energy goes down tomorrow.
I have learned so much from all of you and appreciate all the great advice. It makes me confident that I can handle almost anything chemo throws at me.
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Hi all you Jewels - is it too late to jump in? I've been hanging out in the "just Taxotare & Cytoxin" thread, but realized that I have a lot in common with you all too. I think (looking at dx) that vettegal & I are practically twins...
I started 6 rounds of TC on Jan. 18. I still haven't figured out why I'm getting 6 rounds when it seems like everyone else gets 4, but oh, well. Maybe because this is my second bout with bc (had it on the other side 13 years ago).
I so appreciate all of your comments, because it makes me feel like I'm less crazy and less alone. The constipation has been the worst part for me, I think. I have the Senokot now, though, so things are starting to "loosen up" a bit.
CHJ
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Hello Sis,
Its me Dana, sorry I havent been online for a while; school is really keeping me busy. Today is the day I find out my regimen cocktail from my Onco, I cant wait to get this started and move forward from all this.
I hope everyone is doing well, I will try to keep up on the reading when I get the chance.
I continously still pray for all of you! I write back today when I get the news of the regimen and date I will start. Kind of worried about the SE and worried that I wont be able to do school but I will keep the Faith and remember that God has plans for me.
God bless,
Dana
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Oh yea one more thing, can anyone give me any remedies to use for the first day of chemo! I have heard that if you put a cap on your head with ice or a wet cold towel while doing chemo or after you wont lose your hair.
I also heard that I should suck on ice during chemo.
Whatever remedies you can give me I would greatly appreciate it cause I want to be able to function in life and go about my day.
Thanks in advance - Hugs.....
Dana
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One thing I've learned after just one treatment - make sure you drink lots of fluids... I've had problems with constipation (as some of the others have said) and I also got dehydrated. You might not feel like ingesting a lot of fluids, but stock up and do it anyway!
CHJ
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Dana, I have read (and believe) that it isn't a good idea to do the ice/cold towel on the head thing. It may indeed prevent hair loss to a degree. It may also prevent the chemo from reaching tumor cells that have migrated to your scalp/skull (skull is one of the first places breast cancer cells go to look for a new home). I wouldn't want to take that chance, just to keep some hair that will grow back anyway.
The nurses at my hospital give ice to prevent mouth sores resulting from Cytoxan Tx's, so that I'm ok with. I guess breast cancer rarely tries to find a new home in your mouth.
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Chj127 - you are not alone, we are all here for you and that is the best part. I dont know if you are spiritual but when I feel alone I remember I am not alone God loves me and he is here for me at all times. With you having BC before and being a survivor then you should know God is watching over ya. You can do this, when it seems no one else cares or understand remember I and the other ladies do - we are here for u!!
Cathy-Ca- I am so glad you are doing well, I pray that I and others can do just as well as you. I admire you that you went to the gym and are still doing you - God bless ya.
Vettegal, we both are the last to start but remember everything happens for a reason! We both can go thru it together and I look at it this way; with the other ladies going before us that gives us a chance to find out many more precautious and remedies we can use! So look at this as a benefit and not being something negative. Okay Sweet Pea! We will hold hands together and walk with each other through this.
Golfer and Vettegal- its so nice to put a face with your notes - you two are so pretty. I think we all should be proud to show each more what we look like because it helps you feel more personal with each other - well thats my opinion. Just want to say thanks! Once I go bald I will post my picture because I am not ashamed of anything - I love me and I know God does too.
I tell everyone is class once I go completely bald I will show them my bald head because I am not ashamed of it, this is a part of my life and i am still beautiful! Some of my student friends say they will cut their hair as well but I really doubt they would and I honestly dont expect them to do that. I know one guy will for sure, but how hard is it for a man to be bald, men look much sexier been bald.
Oh yea I have a question - please tell me I will lose weight during Chemo because I am a stress eater and I have gained 5 pounds since October - I know I am a fatty - he ha so i am hoping Chemo will help me lose weight - Smile! That is one benefit.
God bless my Lovely Ladies - talk to you after my appt today!
Muah.....
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Thank you LJ13 - you are right Cancer in the brain is not worth some hair. I just wanted to know! I will not do that remedy. Thank you Sweetheart!
I am learning more in school about Cancer since next week I am having a test on Cancer so hopefull when I graduate I can help you ladies much more or someone else that needs it - I want to be useful like Kathy is to us. Smile.
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HI everyone,
I'm still wating to get started. I'm supposed to get Cytoxan and Adriamycin.
I'm really begining to worry about getting on with it. I live in a small town about 500 miles from my Onc. Dec.10 my Onc said "hormonals aren't working, time for chemo, wait 'till after Xmas"
(I have mets by the way, anyonelse starting in Jan with mets?)
The local hospital in my small town administers chemo so I asked them about a taking a week's holiday before we started. My husband and I had a beautiful time in Maui Jan3 to 11. I came back ready to start. saw the Dr. and chemo nurse who said "you need a port" that was Jan 15 since then the only surgeon went away for a week. finally saw him yesterday. can't do it without a consult from the only anetheisiologist who doesn't work today and is in surgery tommorrow so looks like Thurs. is the earliest for the port. Dr. won't use the port when brand new and doesn't work Monday so maybe next Tuesday we'll finally get started. 3 weeks later than my onc suggested. I called local chemo office and suggested we just start without the port tomorrow. they said no a couple more days won't matter. What do they know? they aren't oncs. I think this is making me crazy. I'm almost ready to get my hair dyed again it looks like i'll have it for another 3 weeks.
I'm startin to ahve some syptoms like coughing and small lumps forming on myscalp like I did a couple of years ago before i started the hormonals. It seems like the medical people just don't care. whatever works for the is supposed to work for the patient. i wonder if I should drive 500 miles each way through the snowy roads but by the time i get there I'll only save about 2 days. I'm blowing off some frustration here with people i think will understand
thanks for listening
Judy
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Good afternoon JJs!
Ummm, thanks for the comments. I hope I didn't go overboard, I truly just felt like since I'm sitting here on my butt doing nothing these days, I might as well offer up what nursing knowledge will be helpful. I'm no better/smarter than you gals, though really. Anyhoo...so,
Welcome chj127! I've added you to my list and I'm sure D1 will add you to the thread start soon. Can you tell us how often your tx are? Every 2 or 3 weeks? If you know your other infusion dates, let us know those, too. And do you have a port, get an IV (just to add to our list). Carol (golfer779) has info on our "group" t-shirt if you're interested. I'm pretty sure she has extras-- they ARE the must-have JJ item, ya know! Where in MD are you? I live in DE. Someone else here (LJ13?) is from Baltimore I think.
Dana: Welcome back girl. We were wondering where ya got to. Glad it was just off studying. Hope you get some answers today. We can all probably give you so much more info once you know your tx type.
Sheebas: How frustrating for you to still not have a plan in place. That sucks! Maybe Canada is different than US, but here they will use a fresh port placed even the day before chemo. Either way, I wouldn't worry too much about a few days. Once they start the chemo it should take effect on those crazy cells-- remember, it's probably all been there longer than you'd care to think about so a few days or weeks is not much to cancer. What status are you (er/pr, her2)? This can make a difference, too.
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Wow Judy - 500 miles is a long way, cant you find someone closer? I cant even imagine driving that far let alone driving 30 minutes to a chemo Dr. I havent started chemo but from what I read and heard you will need a driver - I really hope you can find someone closer because that is far honey. I understand your frustration - I had surgery on the 25th of Dec and today I am finally getting to see my Onco so trust me Cancer doesnt grow that fast to worry about the growth process - as long as you get in to get Chemo then you are on your way to recovery. Keep your head up high and becareful driving sweetie - I will keep you especially in my prayers and know that we are here for you to vent your frustrations.
Off to the Dr. God bless!
Dana -
Hi Jewels. And thanks, Kimberly and D1. I did neglect to mention how its going for me so far.
I almost feel guilty, my se's have been pretty mild so far. Bad taste, constipation, but no bone pain from Neulasta, and not dog tired. I've been careful to pace myself and have been fairly functional. No nausea at all and haven't needed the drugs to take at home. I do have trouble sleeping, but I don't blame that on chemo. This is all just so stressful. I had been so worried about taking care of my mom, but it went OK and I did what I needed to do. I was overwhelmed by how much I missed here in two days.
I may not say much, but I follow along every day and am glad you're all here for me and each other.
Welcome, Judy and CHJ.
Good to hear from Dana again. Your energy is inspiring.
And I get strength from all of you Jewels.
Thanks,
Maz -
Hey Jewels,
Lots of good stuff to read--took me awhile to catch up, and now I don't have a prayer of remembering everyone I want to send good wishes to (guess I'm going to need to take notes from now on!).
CarolC- glad things are working out for you, girl!
Carol (golfer)- great pic!
Welcome Judy and CHJ.
Maz- sounds like you are doing great, esp given that you are getting 3 chemo drugs!
Julie- thought of you today as I went back to work. I had a good day--hope yours went well.
Kathy- thought of YOU this evening when I put on my jammies and kicked back. I'm glad you are getting some down time and hope things continue to go well with your little ones. I can remember when my kids were the ages of yours... (((HUGS)))
Sista- Looks like we're on about the same bc poison. My treatment isn't on the list but I am doing DD AC x 4 every 2 weeks, then Taxol x 4 every 2 weeks via port. I am taking Neulasta the day after my treatment as well. My first treatment was 1/18. Next ones are scheduled for 2/1, 2/15, 2/29, 3/14, 3/28, 4/11, 4/25 if all goes well.
Dana- hope your onco visit went well today.
Cathy-CA- hope your se are minimal!
Take care Jewels. You are all in my prayers!
Paula
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Good evening
I hope everyone is doing well. I was talking with a friend and she was asking me if I was having any neuropathy
. She said her sister did and she went to the local Physical Therapy and bought some bio freeze (not sure of spelling) and said it helped her . I am very lucky so far and have not had any.
D1 I am trying to post my pics having trouble any tips ?
. She said her sister did and she went to the local Physical Therapy and bought some bio freeze (not sure of spelling) and said it helped her . I am very lucky so far and have not had any.Categories
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