Is There A September 2011 Chemo Group?

rockym, how manys days out were u  from 1st chemo, my scalp is tingling. just trying to figure out how long i have before i start losing my hair.

you did a great job describing the scene,i don't like whiskey but i do like tequila mmmm.

Well had  a visit to the oncologist today for bloodwork and came back with more medication versus less.  Not only am I taking the decadron as prescribed but I will also be taking an additional anti nausea drug called "emend" and Nuepegen, as my neutrophils were 0.2 and if they don't  come up by Tuesday then they won't give me Chemo.

I remember someone else posting that they had low neutrohils (maybe Cooka?).  Is there anything I can do over they next 3 days to bring this number up? 

This kind of sucks bigtime because I have to miss Thanksgiving dinner (as there are 18 of us at the family get togethers and at least one that I know of who DEFINITELY is sick and probably would not stay home).

My husband went out and bought a small turkey today so he could make me a dinner, which I thought was pretty sweet.

Kimberly - Thanks for the good thoughts.  My husband is of the same mind as you - now is not the time to cut back on anything.  It is annoying because I want to take less but I will take WHATEVER they tell me to (standing on my head - if they tell me to do that also).

Belle - I think it is hard enough to maintain longterm relationships at a time like this, let alone building a new one.  Currently, the only person who counts right now is you.  You have to do what you have to do (i.e. avoid crowds, restraunts, etc.) to be sure that you are around and in good shape to fight another day.  If feelings get hurt over what you have to do than so be it.  I was always one to put other people before myself but I have to tell you this diagnosis has changed everything for me. I still try and be thoughtful of other people but I do look out for myself more (like not going to visit my girlfriend in the hospital today or going to my other girlfriends father's funeral this afternoon). I need to make sure (as you do also) that I do not put myself at risk just because I feel that I should do something for someone.

RJ - Thanks for sharing your night with us!

I hope everyone has a nice weekend filled with few (preferably NO) SE's! Good luck to everyone getting Chemo next week.

Hi Kayrem, Kelli, Rae and I all had really low neutrophils. I think we all went down to .1. I took Kelli's lead and just plowed through tons of protein...eggs in the morning, turkey burger at night, etc. When I went in today my counts were perfect. But, a lot of it is just up to how steep your recovery curve is. Days 9-10 are usually lowest, then things start picking up around day 14 and by 18-21 many of us are totally back to square one (short version of what my onc told me today). Take care of yourself and respect your body now, and if you feel unsafe someplace or around someone, just set your boundaries. 

kayrem, my wbc and neutrophils are low,too. i get a neulesta shot 24hrs after chemo, i think it might be starting to work judging by the pain in my hips and pelvic. lol

my dr is adding emend to my premeds and giving me a patch for nausea taking away the zofran because of headaches and not helping the nausea and vomiting.

thanks everyone for the input and advice, i really appreciate! hope everyone has a good weekend!

belleeast, I was at day 13 when I felt I really needed to by my halo wig just in case I woke up and the hair was gone.  On day 14, so much was coming out that it seemed like time to give it to Locks of Love before it all ended up in the sink.  Day 18, yesterday, the little hairs were itching me and I knew I wasn't going to be the 1/100000000000 :-) who got to keep any of their hair.

Tingling is the beginning.  I also had some itching and someone described it as a weird tightness pulling on the scalp (very much so for me).  When the day comes for you... grab a few shots and just make the best of it!

As I pass by the mirror this evening, I keep looking at myself and saying... really????  This chemo crap is going to compared to blood letting in 20 years from now.  Their going to say, "Women really did this?  That was the only way to heal?"

peddlerswife, so sorry your daughter feels worse this time,i hope drs figure out what is causing the headaches. for me i think it was the zofran,when i stopped taking it the headaches went away.

tonight, i am dealing with severe bone pain started in hips and knees,spread to spine and thighs- jiminy xmas it is one thing after another, i thought i had the neulesta bone pain on 5th day,but apparently not.

i took 1 clariton on the day of the shot,next time i'm taking them for 4 to 5 days, anything to stop this excruiating pain,ive never felt anything like it!

a friend whose been thru chemo called the bone pain a screaming nightmare,now i know what she meant.

i'm glad you are going to be with your daughter soon, just a word of caution if she has a rough time this time, don't take personal anything she says when she is hurting or miserable! for me this is one rough ride of course i'm a lot older maybe she is tolerating it better. good luck to you and your daughter!

Belle, I have been reading all the posts...I am so sorry you are faced with such a big challenge right now.  I don't like giving advice so I will tell you my situation. I have been married to a great day for 10 years.  I am 54 and this is my second marriage.  The first one was the quoted "red flags painted green" and I swore I would not make that mistake again.  My DH is a good man but he is totally incapable of providing the sort of verbal support I need right now.  He is the only one close to me that has not made any kind of complimentary comment about my bald look.  My sons, my cousin and my friends and coworkers have all made comments like "you look great" or "you are beautiful". And although I'm not sure I believe them, I try to because I want so much to feel like I am not allowing this disease nor treatment to define who I am.  So, on some days I am resenting that I am not getting that verbal support, and on other days I am remembering an old adage that says you don't go to a hardware store to buy a loaf of bread.  My husband in this case is the hardware store, and I seem to be looking for that bread.  He supports me in other ways, and we were having some issues right before my diagnosis, but I am trying hard to just accept him for what he is right now and concentrate on getting better.  Guess what I'm trying to say is that you don't have 10 years invested and if that guy is a hardware store and cannot supply anything you need right now you probably need to think long and hard about what is right for you. 

I have never been a selfish person in my life, and have to retrain my thinking that asking for what I need right now is not being selfish.  Most people WANT to help so desperately, and when I need the help I try to remember that maybe I am making them feel good at the same time.

OK, enough of a soapbox.  Yesterday was tx 3 of 4.  Took a sleeping pill last night to counter the IV steroids and actually got some rest.  Of course was up 3 times to pee - gotta love that hydration, plus one more time to take another Zofran.  I take it every 8 hrs whether I need it or not.  I do get a mild headache but tylenol seems to be able to beat it.  I am also drinking the nasty thrush medicine before any of that particular SE shows cuz my MO thinks maybe it will slow down the diarrhea later this coming week from the mucositis.  Not much of a medicine user, but right now my life has become better living through chemistry.

RJ I am so inspired by your story.  What an awesome thing, and I feel like I was right there with you that night and on your bus yesterday.  I think we all need to look for the hidden blessings in all of this.  I keep shaking my finger at women who say they need to schedule their mammo.  Really?, I say.  What the hell are you waiting for!!!  If mine had been 2 months earlier, or two months later, my journey would be vastly different and way more serious.

As for the hair.  On day 15 of round 1 we shaved my head as the hair was coming out not in clumps but just all over major shedding.  I didn't have tingling, but I did feel like it was sorta dead up there.  I am now day 2, round 3, and still have nubs.  Am using the chemo brush a couple of times a day to try to clean it up.

Rockym, I am with you.  The hair loss is like torture.  I realize the researchers are concentrating on cures and prevention, but couldn't someone out there figure out how to keep hair follicles alive?  I too am not touching my eyebrows or eyelashes much.  Hoping for a small victory there.  One more treatment and a month off before rads!  Hugs to all, and best wishes for SE free weekends for all of us.

Maggie - Sending you loads of gentle hugs!! I'm sure the rainy weather isn't helping out. I'm ok with having no hair, it's this in-between Linus look that bums me out! Good luck with your buzz. For me, I felt more in control once I had mine buzzed. I hope you're feeling better soon!

xxx 

hi all, i've decided to put it all up front with him about my issues with his "quirks", that i have been thinking about ending the relationship if he doesn't resolve them. i am going to be honest about how some of the things he does or doesn't do upset me and go from there.

if he is the man i hope he is it will work out if not i'm outta here!

maggie, i feel for you the neulesta pain is horrible, i took 2 tylenol #3, my sleeping pill last nite it helped. this morning it feels better. i have a cold sore on my lip this morning and can feel mouth sores starting inside, i'm going to be swishing a lot today. called dr ,she's calling in scrip for cold sore-pill take 5 x day for 5 days,can't remember what the name is.

i'm glad the buzzing went well! i guess i have about 5 days before my hair starts to go,my 1st treatment was on the 27th. hope everyone has a good weekend!

kimberly, it took me a while to figure out too but not as long as you only because i had read a post from someone from canada a little while before and i remembered!lol

karen, i'm sorry,too, that you missed being with extended family this year. it was pretty sweet of your husband to get the turkey,i hope he cooked it for you,too. lol i hope you enjoyed the day.

belleeast - Please concentrate on yourself and don't feel bad if you don't want a relationship during your treatment.  No need to apologize, just tell him that you need all your energy for healing right now and that you will let him know when/if you are ready to date again. 

shelley2011- I'm so sorry that you are feeling poorly with the diarrhea stuff.  I hope your symptoms improve quickly so that you can feel better soon.

 Take care everyone.

 

Pinkshirt, please note that right now I am not having the intestinal SE.  I appreciate the thoughts but was trying to describe for Belle the symptoms of mucositis that may set in as my week wears on.  Believe me, it is not a pleasant SE.  I hope that you are all spared....

Kimberly- So sorry you have been feeling so bad both physically and emotionally. Honestly, reading what you wrote was like hearing my own thoughts after my second round a couple weeks ago.  My third infusion is on Wednesday, and I'm hoping to stay more positive.  Really, really hard to do when we are battling all of the side effects.  I also get frustrated because I feel like I can't predict moment to moment how I will feel.  I am hoping today is a better one for you. 

As for what you brought up about PET/CT scans and CA27-29, I also feel anxious about not having them done.  The 3 oncologists that I met with at the cancer institute where I get my treatment all said similar to what your doctor said and did not recommend one for me.  They mentioned the CA27-29 in passing at my initial case staffing and stated that they did not recommend it in my case and only did in a certain type of case.  In my case though, my lymph node was clear.  Yet, they didn't know that initially, though.  Anyway, when I read about it on here, I started second-guessing and worrying so I asked a friend who is a radiation onc. who had reviewed my case about it.  She directed me to Dr. Susan Love's site- http://www.dslrf.org/mwh/content.asp?L2=2&L3=8&SID=132&CID=591&PID=0 that explains it a bit.  I feel that I struggle knowing what is being an advocate for myself and what might be pursuing something irrelevant to my specific case.  I'll be curious also to see what the rest of the group says.  

Kimberly - Day 4 after my 2nd chemo and I'm wallowing in the same kind of pity party. Being rational doesen't seem to help. I know, I'll be feeling better in a few days and I'm now 1/3 done with my big treatments, but It still SUCKS!!!

To top everything off, LE has set in. The LE bugs me more than anything else, other than cancer itself. UGH!!!!

On the up side, I didn't get thrush this time .