Sept 2012 chemo

Hi All:-)

I am so super sick:-(  My son has been sick for the last few days- and I have been washing hands like crazy, but I still got it.  Super congested, sore throat, head aches, muscles ache. Yuck!!!!  I am so worried this will impact my blood counts- and I am scheduled for chemo on Tuesday.  I have been trying to sleep a ton- any suggestions for what might help would be greatly appreciated.  I am also worried about getting hospitalized on Thanksgiving.  This sucks!

Queenkong:  I am so sorry you have been sick!  We missed you around here.  Diarrhea for ten days sounds terrible.  It must be hard to keep hydrated.  And that WBC sounds crazy!  Do the doctors know what is causing it?  Is it just the neulasta?  The neulasta seems to just barely keep me in the clear.

Patricia:  congratulations on the disappearing tumor!!!  I hate that you got a ticket the same day to mess up your good news, but I like your attitude of just not worrying about it.   Focus on the positive- and what positive you have to focus on!!!

Whenlife: I totally know what you mean about delays not being in your chemo plan!  I just want this chemo thing behind me as quickly as possible  congrats on #11. 

English Rose:  That story was so funny!!!  it is nice to laugh at all of this sometimes.

Cherioo:  That is so awesome about the fundraiser!  You must feel super loved:-)  Hope everything went well in the big girl chair

I am super happy everyone is getting near finished with their chemo- but also was getting sad that everyone might move on to new boards and I won't hear from you anymore.  Hopefully we can all stay connected even through our next round of treatments.  I have surgery after this, and would love the advice and knowledge of all of you have already gone through it.

Hope everyone has a great weekend with no SEs!  I have a fun craft date with a bunch of ladies tomorrow.  I am so looking forward to it, even though I don't feel well.

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Patricia - congrats on your disappearing tumor!  So happy for you.

Mariposa/Queen - praying you feel better soon.

Cherioo - how are you feeling?  Hoping the fundraiser is a big success.  I am figuring when I am done I will have about 20K out of pocket expense but am not focusing on that now.

Butterfly - I have had 2 Taxol treatments.  I still have both eyebrows and eyelashes, but that are half of what they were before treatments.

All - Even though we are all moving on to other treatments or surgery and will become involved on other threads, we can still continue this thread for years.  I would very much love to hear how everyone is doing past chemo and to know we are all cured!  I see other chemo threads are still active that started years ago so I hope we will all continue to post updates.  Let's not lose sight of a "after cancer" get together too!

Mariposa - Hope you feel better soon.  

Need a laugh?  Here are a couple links to some well-written, humorous posts on McSweeney's.  Thought you all might relate, and get a good chuckle out of these:

http://www.mcsweeneys.net/articles/an-open-letter-to-the-people-in-charge-of-commercials-targeting-women

http://www.mcsweeneys.net/articles/an-open-letter-to-people-who-use-the-battle-metaphor-for-other-people-who-have-the-distinct-displeasure-of-cancer

Jojo - I see you are looking at sugery options too. I am think the same. I am even considering getting the surgery now, before I finish chemo because I am having such a hard time & am having a good response to chemo so I can have the pathology report. Why go through it if I may have had pCR? (complete Pathologic response). Somtimes, I think double masectomy and have the ovaries pulled but then boob saving surgey options seem feasible. I don't know what to do.  I don't even know if I should stay at Roswell, not having a good experince since my oncologist left.

Lemons - thanks for the stories, those cheered me up.

Mariposa - sorry you are are sick. I've had something for weeks now and I have one of those school going young children and they bring these things home.

QueenKong, so in a way, I'd think that's good to know that AI disease runs in the family because that may be why your system is reacting so strongly to the Neulasta (or the stuff your child is bringing home.... Of course, I'm no Dr & I would expect they are watching all the other necessary markers in your CBC.) I got fevers too. I have to report anything over 100.5 to my MDs. Did tylenol or ibuprofen bring the fever down? Taking tylenol helped me with the neulasta fevers. I still slept for a day after each one but was not as uncomfortable.

Mariposa and Queen,

Hope you guys feel better soon and avoid the hospital. I had to spend a weekend there once...no fun. Jojo, I completely agree that we need to keep this thread going no matter what stage of treatment we are going through! Love to you all!

Mariposa and Queen, sorry you guys are sick I hope you're able to rest and are feeling better soon. Mariposa, my restorative yoga teacher mentioned in class that back bends are good for immunity...certainly can't hurt! Here's a restorative video I found on youtube: http://www.youtube.com/watch?v=CGLvtWYcuuE&amp;feature=youtube_gdata_player

In general the goal of restorive is stress relief, which also benefits the immune system.



Have any of you guys been feeling more clumsy than usual? I find that I've been bumping into things, and dropping small things like utensils, telephone, etc. Not all the time, but sometimes a few times a day.



I hadn't seen my MO for a few weeks, because of the hurricane and traveling, and when I mentioned this to her yesterday she was very concerned. I was surprised by this...it's not really a big deal to me, and I figured it was just neuropathy, thought I haven't had much if any numbness ot tingling recently. I'm going to see a neurologist on Tuesday, and now I'm really freaked out. It doesn't take much for my mind to go to the dark places these days.



This combined with feeling overwhelmed about so much (the holidays, all my friends suddenly falling off the face of the earth) let to a major meltdown when I woke up this morning. Then I decided I wasn't getting out of bed, which my husband couldn't understand. I just felt like I couldn't face anything else, I didn't want to take care of anyone else, I just wanted to hide in bed. He said it seemed like I was giving up. I said after three months of putting on a brave face I need a fucking break! He still doesn't get it, but at least he's stopped trying to drag me out of bed.



Anyway, just felt like I needed to share that



Jojo I totally agree that we should keep the thread going!



Patricia, congrats about the tumor!! That is such wonderful news! Thanks for sharing it with us!



Hope every one is feeling good!



xoxo

Cocobean, since your post on 11/3 about Dr. Pegram, I have tried to find something on-line about his speech and that herceptin is to come first in the chemo TCH treatment.  When I couldn't find anything specific on-line about this, I asked  the oncology nurse.  She was very surprised to hear this because the treatment is TCH.  She said that if herceptin was to come first, the treatment would be called H + TC.   She believed that if you went to a speech by Dr. Pegram that you would have available the outline of his speech and an index that would list the research that was done that supports that herceptin is to come first.  Could you please provide this information?  I have already had 4 treatments and the thought that it may all be for nothing is very frightening.  I would very much like to show the nurse and the doctor anything that would substantiate that herceptin is supposed to be the first drug received and receive my last treatments in the most beneficial way.  Thanks! 

Hi all,  I hope all of you are well,  I wish I could report that I am.  Please, anyone weigh in for me after you read this.  I am beginning to doubt my own judgement about these treatments anymore.  I had my 4th and final dose of A/C treatment Thursday afternoon.  I had told my Dr. I wasn't feeling strong, 2 neupogen shots just to get prepared for the treatment.  When I got to the center, I've lost 9 pounds in one month, so I hear them saying they have to recalculate the dosage. OK. Then a few minutes later, it doesn't need to be recalculated, according to them.  So there is a big brouhah, and the resident and the chemo nurse, and the pharmacist are all talking, when my Dr got there I said, " look, I am getting really bad side effects, if I lost weight I don't want the full dose of this stuff."  Well, they recalculated it, but not before they all seemed pissed off, and pointed out to me that it was only 5cc's difference.  Ok, skip to hours later when I was home, I was never so sick in my life. Many bouts of nausea, and I can tell it feels like expelling chemicals.  That is your liver, no?  If your liver can't process it, your body will try to expell it.  How do I know I can tolerate 8 taxol treatments.  I tell him I dont feel good, and they go ahead with the treatments anyway.  So then what can I do?  Try and find another doctor?  I don't feel good, and I dont even feel like I can call, cause its the weekend, or he will say go to the hospital. What would you do?  Does this type of thing happen to any of you?  

Hope, I did have a little banana. More is coming. I have low potassium too so banana I need. The pills they gave me are too big too swallow and there was a gritty nighmare in my mouth when I tried to chew it, gak! 

I feel a little better now. I need to eat more and keep up the fluids.

Mariposa123, Since you asked for an opinion, I will give you mine.  I too was in a hurry to finish up my 4th AC treatment, and it turned out horrible (see above).  If they tell you to wait after Thanksgiving, why not wait?  I asked my Dr. if I could wait, but he didnt want to, and said I would feel better by then.  I sure hope so.  I would rather enjoy the day with my kids than be preoccupied because I feel so lousy. Whatever you decide,  hope it turns out great for you.

Queen,  I have anti-nausea meds, they just never worked.  I got sick after every treatment.  I had all of the pre-chemo meds and the Dr. did adjust them, lower the steroids, upped the anti-nausea meds, but still sick a few hours after the treatment.  I know to trust my instincts, and I believe I am being perceived as a troublemaker to them.  So what is there to do?  Switch Drs.  but are they all the same?  Did anyone switch Drs. and have a good experience?

Butterfly I think that our DH do not know how to handle how we all are not ourselves right now. I can't tell you how many times I heard you need to get out of bed or stop being depressed. I finally had to explode and tell him to read about the side effects of the chemo and how it slows you down . He finally got it . I think they are not use to having to take care of the kids at times and multitasking which mine can't do . He is use to going to work and that is it. I would work, take care of kids and clean, cook and go to sports events get kids ready for bed and take care of everything now I can't do everything. I am not working but still do everything else but when I am done chemo and need to go to bed he knows that he has to take over and he has been doing a great job. Thank god Taxol has been much better then the AC for me so far so the only side effect is I am tired

Hi everyone,

  I am still super sick:-(  I have been taking lots of medicine to try to stop it from getting really bad (I have a lot of scar tissue in my lungs and tend to get pneumonia really easily)  Thanks Melrose, Butterfly, Toastiecat, Hopex3 for all of the suggestions.  I am trying everything!  I also appreciated your feedback Waiting.  You are totally right- better to wait then go through it and be incapacitated. 

Waiting:  Because I vomited the first time (I have actually had a vomit episode every chemo thus far- but only one, not nearly what you are going through), my doctor wouldn't let me lessen my steroids.  I now actually take them over a longer period of time (2 the day prior, 2 the day of, and 1 the next day, and 1 the next day) to help with the nausea.  He also is giving me extra fluids the day of chemo and the next day when I get my neulasta shot.  The last thing he did was to change my meds to Emend- which seems to work better for me.  I think a lot of insurances don't pay for the emend, and it has some pretty horrible constipating side effects, but I find that it helps more with my nausea.   Sorry you are feeling so horrible!  I hope you are feeling better soon.  I also wanted to say that I totally appreciate your feedback.  You are right - better to wait and do the chemo when my body is more up to it, than feel incapacitated.  Thanks for reminding me.  I just was looking forward to having my good week over Christmas for my kids... but getting hospitalized doesn't really sound like a good plan.

Jojo:  So glad you want to keep connected too!  I love the idea of a post cancer get together!  I have shared more with you all about how I am doing than I have with really anyone else.  It is so much easier because we are going through this together.

Whenlife: Thanks for the links! The letter about battling cancer was particularly interesting!  I hadn't really thought of it that way, but it makes a lot of sense.

QueenKong: I hope you are feeling somewhat better.  Sorry you are having such issues with your center!  I can't imagine how frustrating that would be.  I am going out of network for my care, and my insurance told me that I would have to stick with them throughout my care... but I guess I could change doctors as long as they were at the same hospital.  Good luck!

Terri07-11:  I had written in my notes to ask my oncologist about the order of meds (I am also on TCH)  I am at Stanford - where Dr. Pegram is, so I am sure my oncologist can ask him (or should know- I would imagine)  I meet with him on Monday so I will let you know then what he says. 

Toastiecat, PatinMN, butterfly, and cherioo- I am having the same issues with my DH.  I feel like I am constantly complaining about the same things- and I am getting more and more annoyed.  I feel like crap, I have cancer, and the house is a disaster.  I know it is hard with two little kids- but geesh!  I know a lot of this is because my DH is also not so good at multi-tasking... and I should just be happy that he does a good job taking care of the kids... but I can't help feeling frustrated.  Last night, I stayed up way too late and looked at things about statistics I shouldn't have and had a crying breakdown.  Toastie cat- I totally get where you are coming from! I try my best to stay positive, but I am human.  And I have cancer.  And that sucks.  And some of my friends have also fallen off the face of the earth.  One that hadn't called in forever finally asked me to lunch last Friday, and then she blew me off!  It is all irritating.  Okay.  I am done complaining.

I think I am going to take everyone's advice and go to sleep early tonight.  Hope everyone has a nice evening.  I feel like I always write a ton!  I am kind of a talker.

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Mariposa you can write as much as you want . We are here for each other