Starting Chemo, November 2013 Group

Amazon...sorry about the infection...best they found it now. When your ability to fight is decreased it can be soooo much worse!

Wally momma and Lisa.! This week is the hair issues for alot of us! I would have shaved mine last nite but waiting till tonite to do it via skype with my grandson. Today is hubbys early day so it will be easier to set it up! So TONITES THE NIGHT! Ive been sheeding like crazy. I keep combing it to my puppy and cats wont have the urge to eat it!! I look like a scragglie rat! I did have pretty hair! Could do so much with it! No matter! Off to adventureland of Baldness!

It sucks that this stuff messes with our digestion so horribly! Like I ALREADY have not battled that! Its almost a joke in our family! I cant eat....I cant poop...what good is that whole piece of my body! Now its REDICULOUS!

WRENN...your not a big baby....like us all we have ups and downs....sometimes I lay here and cry other times I'm ...just another bump in the road! At least they got all my cancer out and this it to help assure it WONT be visiting me again! For my lips to Gods ear!

Dont even talk about dental. After those wonder MDs overdosed me on steriods in 2005...and almost killed me with MRSA sepsis, almost bleed me to death ignoring injury by falling out of bed (due to steroid psychosis) and more....I lost half my beautiful teeth. Im expecting the rest to follow suit after spending a fortune to save the few I have left. Oh well.....No teeth...No hair....maybe I could contact a movie studio to play a homeless person! eeeegggaaaaddds! Cant even be a zombie...they have teeth!

One note...everyone said dont eat what you like....well....I took a chance and on the days this week I have felt pretty ok....my birthday...I ate carrabbas!!!!! and all the left overs...no problems! Last night chinese! I think its mostly linked to nausea....I still cant have sausage biscuits..after morning sickness with my daughter 30 years ago! Anyway....I really enjoyed it!. Not that I would constantly eat normal.

Lisa...I do think the juice and soda water makes problems worse. More gas with sodas and the juices...well acidic....I have stuck to alot of cranberry juice! seems Im ok with that for the most part. I do miss my bubbles!

Hey everyone else! Hang in there....Quirky stay with us!!

Im just feeling a bit punky today...not too bad....considering..!

Blessings and prayers!

t're!!!

I think maybe most of us have our very UP times and our very DOWN times with this.

When I woke up this morning, I still had a touch of the heartburn, but not too bad. My husband decided I should eat, and so he baked me up some pillsbury cinnamon buns. OMG. I ate 3. Went back a couple of hours later and ate the other two. I guess the steroids had kicked in lol... I took my daily does of those, plus one of the anti-nausea meds (Phenergan, maybe,) because along with the original heartburn still being there, I felt like I had a hangover--a little queasy, but didn't want that to get out of hand, since I knew I had a two hour car ride ahead of me.

So when those cinnamon buns were ready, I was more than ready, too.

Off to the doctor's office, and I tossed down an Ativan, also for anti-nausea, because the idea of tossing those cinnamon buns on my husband when he'd been the one who cooked them seemed like it would just be rude and ungrateful :P

I had also had my morning klonipin when I got up, so needless to say, by the time we got to my doctor's office (for the Neulasta shot--an hour away from home) I was really wishing I could curl up someplace and sleep. And lo and behold a lady had a little cart and was passing out delightful sandwich/wraps and brownies, and all I will say about THAT is that I did manage to say "no" to the brownie, but I totally enjoyed a delicious veggie wrap.

Turned out the husband had a whole LIST of places he wanted to go, so after the shot and then a lot of riding around in the rain, I was half asleep again...until we got to the grocery store, and then I just wanted EVERYTHING lol.

Came home and had some ice cream, and even now am trying to decide whether to nap first or have a snack first. All I can say is that #1. this certainly feels better than yesterday/last night did, and #2., I'm glad I'm not taking the steroids every day or we'd need a bigger truck to get me to and from doctor's appointments.

For those of you having rough days.... I'm so sorry, and hope you have a good, fun, hungry, drowsy day soon, like the one I've had today. And I'm sure you will. In the meantime, complain all you want and don't worry about being a baby---I'm sure I'll be on here whining like a two year old myself before the week is out. It's all just high points and low points on the rollercoaster, I reckon.

smrlvr-

I think we all do have ups and downs...I have been wrestling with nightmares of cancer in my body and wake up and can't go back to sleep...have had people pray with me, over me, and actually stopped last night...I am also taking Ativan to sleep and sometimes in the day and used Xanax since diagnosis when anxious before I got the Ativan. I have talked to a friend that is a psychologist and she also had breast cancer 7 years ago...THAT has been most helpful. I just feel better after talking to others that have made it through and are healthy and happy and they say = you will wake up one day in the future and the first thing you think of will NOT be 'I have cancer'....There is HOPE! There is getting over this! But last week you probably couldn't have convinced me..so I think it depends how you are feeling, how low your counts are, and /or how strong and healthy you are feeling...

This is a HUGE mental disease to deal with, which I guess I didn't know...and definitely hard to deal with that and the physical symptoms....

This site is great with ideas/ empathy and genuinely nice women and I think that's helpful also.

Good luck and it will get better!

Hi everyone,

I'm sitting in the Big Girl Chair getting round 3 of AC right now. I hope the next two weeks go like the last four...my side effects were annoying, but mostly manageable.

Smrlvr, my doctor gave me Zofran, Compazine, and Ativan. Maybe ask about Compazine? Also, I TOTALLY get the worrier/planner personality...that's me! It feels so good to be doing treatment, but I wonder about afterward when we're just waiting, waiting, waiting for good/bad news. I think I'll be back to having nighttime anxiety like I used to have.

Ellenkc, I know it was a few days ago that you posted about hair stubble but, yes, I still have stubble too. My hair started falling out 11/11, and I had it shaved to 1/2" 11/13. I rubbed most of the stubble off over the next few days, but there's still some there. I had a lot of sensitivity, especially when my sleep cap shifted against the "nap," but that has subsided now. And I still have stubble! Am I ever going to be totally bald?

Audra67, I wonder too if there was something I did that "caused" this or at least made it easy for the cancer to choose me. I can't figure it out. All I can come up with is that I was on BCPs for a REALLY long time (since I was 17 until the week of my surgery, with the exceptions of trying to get pregnant, being pregnant and nursing). Also, I love wine. I really love wine. My doctor says that now I get to love three glasses a week. Meh! I told my husband that if all I get is three glasses, it's not going to be Charles Shaw anymore.

I'm starting to get that funky sinus feeling when the Cytoxen is half-way done. Whatever...in a half hour, I'll be three down, five to go!

Bec,

I was on birth control pills for a long time also. 27 years. I think it was too long and in my case I think it may have contributed. My BS said ithe pill definitely masked my cancer, made it harder to detect using mammography. I also had a lot of stress over the past three years. My husband lost his job 3 years ago and there were other stressors.

No one knows. It probably doesn't help to look back. We need to look forward .

My daughter came home from college tonight with a cold. I hope I don't get it. Don't want to delay my next treatment.

aww Paulette that's very cool. We shaved my head at a Memorial Day party at my sister's house in front of my whole family.....we laughed the whole time too....makes it less scary for sure when you have the support of loved ones! Glad it was an ok experience for you!!!

Amazon-- How are you doing now? If you want to play with your nurses tell them they have to buy you dinner before they poke you

now onto the shave...so not so prikly!!! hubby former navy...its worse if u don't shave it!!!! especially sleeping! will post pis shortly!!!!

thank you Melrosemelzoe, and happy Thanksgiving.

before!!!

lo!!! it was actually a funny night!!!! no tear just lots of laughter! !!!!!

Love the smile! You have a nice head too.

thanks fairy!!!! lol....gotta laugh at it all! the other just is ....welllll....not acceptable! finding laughter in the smallest things.....hair....farts and hemmoroids!

You rock, Paulette!

Thank you, Melrose, for such good thoughts and encouragement!

Smrlvr, we have so much in common. My daughter came home from college too, coughing and blowing her nose. Yuck, and fingers are crossed for both of us. We also had lots of stress the past two years. When I asked my doctor how long she thought this cancer had been growing inside me, she said probably about two years. Hmmmmmmm.

I hope everyone has a good night.

smrlvr :

Yes, klonipin is in the same family of drugs with xanex, ativan, and valium. They are in the same family but are each a little different.

I'm not pharmacist here, but this is what I gather about them--but keep in mind that before my whole breast cancer rollercoaster began, I knew pretty much nothing about any of them.

Ativan is prescribed a lot with chemo treatment because not only does it relieve anxiety, but it also has anti-nausea properties. When I had my first biopsy and it hurt rather more than it should have, I think my surgeon felt pretty bad about that, and he asked me what he could do.... and I tearfully said, "Just give me something for pain, and....something for anxiety." Surgeons aren't really in the business of treating anxiety, so he gave me a choice between xanex and ativan. I chose ativan...no real reason why, I just did. He set me up on a dose of 2 milligrams, which I now know was rather high (lol.) It worked very very well; I started cutting the pills in half once I researched it and found I didn't need THAT much at once. I wasn't anxious anymore, in fact, I was downright euphoric at times, especially after my surgery when I was ignorantly taking the ativan right along with the hydrocodone for pain.

Then I went to my PCP, because the surgeon---being a surgeon--wasn't going to keep handling my anxiety issues. I talked to the PCP about the problems (major major problems) I was having when I did NOT have the ativan--I was thinking at the time I might actually need an antidepressant, but the PCP said let's wait on that, that he didn't believe that I was depressed really--just understandably shaken up and sad, that I just needed help coping, and that if the klonipin would help me, then there'd be no need for me to deal with the side effects of the anti-depresants. If the klonipin didn't work, we'd re-visit antidepressants.

Made sense to me. He put me on a dose of .half a milligram of klonipin, twice a day if needed--and said to go ahead and TAKE it twice a day, unless i really didn't feel like I needed it, while I am dealing with the stress of cancer treatment. He also---and this is EXTREMELY IMPORTANT---told me to call him for an appointment if I started feeling like I had to take more than that dose--once in a while for an extremely stressful situation was okay he said, but if I started to need---or want--more of it on a regular basis, we'd need to re-evaluate.

The difference between those two for **me,** is that ativan kicked in petty fast, made me feel great for a few hours, and wore off. Klonipin, on the other hand, takes an hour or two to kick in---so it's not really good for sudden panic attacks like xanex is---but what it does do at that dose is keep me on a pretty even keel all day; I'm not a zombie, I do have moods, laugh, cry, think about cancer, etc., but I'm not overwhelmed by what's going on in my life right now, and I can put it aside and attend to the things that need to be attended to. I can function.

I take one at some point after I get up in the mornings---unless I just feel like I'm gonna have a great day, in which case I wait til I don't feel like it's a great day anymore, lol.....and I take a second one somewhere between 6 and 10 hours after the first; if needed: If my nerves start feeling sort of "jangly" or I find I'm dwelling too much on my possible future or if I'm irritable or...well, you know all the feelings...that's when I take my second one. (Actually as it works out, I usually take one--and some days it's the only one---around the time when my husband is about to get home from work and the dogs are going to be excited and there is dinner to make and things to talk about and it seems that I just a really bad of sensory overload---too much input---without the klonipin these days. I take it about an hour before he gets home and I'm able to deal with all that without feeling like I'm going to scream or explode, or get irritable at HIM--which I never used to do. I'm like I used to be before the cancer thing happened. Which is exactly what I wanted.

My husband has been an absolute perfect angel through all of this---patient with me when I was having anxiety attacks, gently changing my bandages and stripping my drains and washing me in the shower while I just stood and cried and generally felt shattered, and he never complained about ANY of it. He spends extra time--even more than before--just hanging out and talking to me and watching tv shows he wouldn't watch on his own because I don't want to watch gritty or violent types of things right now. I stood in front of him naked with my no-reconstruction scars and my five drains poking out of my body and tears running down my face and he told me I was beautiful, and he *meant* it. If taking two little pills per day will get us through this without ME making HIS life miserable by being unable to function and impossible to deal with, then I will absolutely take those two little pills.

It *could* be that something like klonipin that is what you need: Xanex is in the same family of drugs, but it's at the opposite end of that spectrum, based on what I've read: It kicks in fast for sudden panic attacks and anxiety, and wears off more quickly. I obviously can't get into your PCP's head, but it could be that since you are dealing with breast cancer, you are taking the xanex more often than his doctor would like. If it were me, I'd ask if I could switch to a low dose of klonipin, and if he/she says no, I'd either talk to my oncologist about the issue and see if he/she would prescribe something, OR I'd go talk to a different PCP; one who has a better grasp of anxiety issues that last more than a few weeks.

Reason for this is that technically, drugs of this type aren't recommended to be prescribed for "more than a few weeks." They CAN be addictive, and they can create psychological dependency. This frightened ME about taking them at first, but after doing some reading, talking to a couple of people who HAVE safely and properly used one of these drugs on a long term basis without building up a tolerance or with much difficulty in weaning off them, and talking to my PCP--who DOES know more than the average PCP bout anxiety and depression issues, and my oncologist, this is the conclusion I've come to: Some people do start to take more and more of them--whether it is a building up of tolerance based on the drug itself or whether (and this is what I think) some people think well if one makes me feel THIS good, then TWO will make me feel even BETTER....(which is actually true, unfortunately) and they let it get way out of control. THIS CAN BE EXTREMELY DANGEROUS, so don't do that.

When I started my chemo, my oncologist told me to go ahead and keep taking the klonipin (I love this man,) and he also prescribed ativan, because he says klonipin is working for my anxiety exactly as it should be (and has been now for around six weeks,) but that the ativan is better for nausea...and occasional sleep issues, so use klonipin as regular, and use ativan only for nausea and if I can't sleep, and I should be good to go. Seems to be working, though I've barely used the ativan. Oh, and the onc put me on a MUCH lower dosage of the ativan than the surgeon had--- surgeon's original dose was 2 milligrams (!). Oncologist's dose is a half a milligram ever four hours IF needed.

It is absolutely true that getting a lot of support from other people can help, there is catharsis in writing about your problems, there are so many things we can do that CAN help us, but sometimes, as my chemo nurse said yesterday "better living through pharmaceuticals" is a perfectly logical and appropriate choice. In my case, I NEEDED something. I know we are "supposed" to be sad sometimes and supposed to be scared sometimes or cry sometimes, etc.; and I believed what everyone told me when they said "it gets better." For many, if not most, women, they can muddle through it, one way or another.

For ME , that was NOT enough, because after being a very self-contained, extraordinarily laid back and calm person for years---but with hidden underlying major anxiety issues the entire time---getting the cancer diagnosis opened the whole Pandora's box of things I'd been holding in and not dealing with for years, and I literally could not function. I came to the realization really quick that if I wanted my life, my peace of mind, and most importantly, my marriage, to survive the cancer, then I needed to DO something. So I did.

I understand the possible addiction issues. I understand that if I start to build up a tolerance I will probably have to switch to some other drug. I understand that long term use may lead to addiction---but I also understand that no GOOD doctor will take a patient suddenly off any of this class of drugs--sudden stoppage can cause real issues. A good doctor will wean the patient off the drug slowly when the right time comes, and I'm ready to deal with that possibility once I'm done with this whole cancer thing. One crisis at a time.

Long story short: If you really feel you need help coping, talk to your current PCP about it. If he/she isn't understanding of the situation, then either see another PCP, see a therapist, or ask your oncologist for a referral; he or she probably knows someone. Nothing is going to make having cancer a happy carefree time of life, but for some of us, we DO need more than talks and support groups and "time." Help is out there; don't be embarrassed or ashamed to find the doctor who will understand YOUR needs and help you safely and properly receive that help and achieve that all-important peace of mind: It's IMPORTANT for recovery from cancer, in my opinion.

Hugs, and good luck to you. PM me if you want to talk more.