Anyone starting Chemo in August 07?

DGHoff

Kim - I TOTALLY hear you on the fatigue thing. It is hard to explain how you can be so tired, but not necessarily sleepy. I also get the occasionally random out of breath thing going on, and my heart beats much more rapidly, and I have to sit down to catch my breath.  It was especially bad this last week when I was in the hospital. I think it is just that fact that our bodies are constantly under stress. 

Nash, I know what you mean about half hoping your counts are not high enough. I got to skip my chemo, obviously, this last Friday seeing as how I was just getting out of the hospital that day. Although, the doc told me I could still do the Herceptin that day if I wanted to.  Hmm. Let's see. It is 3:30 PM, you are just sending me home now from a week of hell at the hospital. I haven't seen my child in a week, and you seriously think I might want to go the clinic to get treatment instead? Clearly, my dear doctor, you are suffering from delusions.

DeAnn  

nash

Well, my wish for a delayed chemo may come true, but not due to my crappy blood counts. San Diego County, where I live, is on fire. One of the joys of living in Southern CA is that it burns periodically. Our neighborhood has not had to evacuate, which is good. However, all the schools are closed, and the cancer center closed. My mom's chemo got postponed until tomorrow. The last time something like this happened was four years ago, and the schools were closed for a week. So we'll see what happens.

  

katoMato

Hi Ladies,

I'll write more when I get home from work, but I'm wondering about Nash & Eve - Are you guys affected by that huge fire at all? I could just see you both ending up with the unwashed masses at Qualcom Stadium as a refuge when you're neutropenia-ized!!!!! Oh my gosh - Please be careful!

katoMato

ok, so I didn't see your post. oops! So much for impatience!

nash

Thanks, Kaye. I was just hopping on here to say hold a good thought for Eve. She's much closer to the narly part of things than I am. I'm in San Marcos, and although there is fire here, they did not evacuate our neighborhood. The wind is going away from us. All that can change in a second, so we're on TV update overload. I'm fairly positive Eve has had to evacuate, though.

My neuro followup for tomorrow got cancelled b/c the docs are all fleeing (according to the girl who called). It got rescheduled for Dec. 4 (!!!!). Argh!

And, yes, Qualcomm in our neutropenia state would be ironic. 

wackyjackie

Hey Monkeygirl:

My nose has not stopped running for a month.  It's driving me crazy.  Also, my eyes just tear.  I wish I could lose some weight from all this fluid leaving my body!!!LOL. Wouldn't that be nice?  Truthfully, I had one Taxol tx and it made me nauseaus. A/C never did that.  I took Kytril and that seemed to really help.  Glad you got to spend time with your Dad.  I can't believe you got your period.  That really stinks.  Can any of us get any break from anything????? I didn't do the walk because my son is making his confirmation on friday and we had to go to church all morning on Sunday.  But I did meet friends who did the walk afterwards and they said it was great. 

One friend is a 9 year survivor and she introduced me to everyone who were survivors.  All I did was cry.  It was very emotional.  Not something any of us ever wanted to be part of but all the ladies were wonderful.  I even got to feel someone's silicone implants!! She insisted.  I didn't even know her.  But, they felt so real.  Girls, there is hope.  All these women looked fantastic and were very encouraging.  It was uplifting.

There is a move tonite on Lifetime Channel.  It's about breast cancer with Rikki Lake.  It's 9 P.M. Eastern time.

California Girls, I hope you are all okay.  Keep us posted.

Have a good nite girls,

Love and Hugs, Jackie

wackyjackie

Angie,

I pray that all will be okay with your mastectomy.  You and your family with be in my thoughts and prayers.

Lots of hugs,
Jackie

katoMato

Hey Eve and Nash - We have an unused Queen bed in our guest room and a blow up twin, LOTS of couches and LOTS of room. I'll Private Message you with my phone number - CALL ME IF YOU NEED A FREE PLACE TO ESCAPE THESE FIRES. I'm absolutely serious.

kimmie39

Katomayo - even when I dont post Im usually reading this thread and you are just a great person.

Just wanted to tell ya.

katoMato

Wow, Kimmie that's really nice of you to say!

The thought of Nash & Eve "crispy, on a stick" just scares me...geography willing, you'd do the same, I'm sure.

ok, now that I'm here: Yes, I've had that heart racing, short of breath experience also. It was a little alarming, I even called the onc who said "let's see what happens" (That's her favorite line) but she was right, it did eventually stop. It seemed worse after #3 i think...i'd have to go back and look at my posts, but now that I'm done with all 4 tx's, I don't have it at all. 

Tami - No, the runny nose never, ever, ever stops. STILL i'm here with the kleenex. Sorry.

Eve - if you have access to a computer and you're reading this, check your pm's...I'm praying for you San Diego girls...Be safe. 

nash

Good morning, girls. I did not have to flee to Kaye's house last night, although I was packed and ready to do so. Many, many thanks to Kaye and her husband. We may still have to hoof it out to La Quinta, as things are still dicey. The evacuation areas keep growing.

I am really worried about Eve--she lives in an area that hit very hard by the fire yesterday.

The air quality here is horrendous, even indoors. My mom's respiration is already not the greatest from the emboli, but so far she's OK. We have air purifiers running.

The cancer center is still closed--my mom missed chemo Monday, and I don't know if I'll get my chemo on Thursday. What a mess.  Although worrying about being frickaseed does take one's mind off of cancer for a bit. What a nice change.

kimmie39

Thinking of you nash and eve.

Im concerned about messing up your schedual. Im I wrong that its rather important to have chemo at certain predetermined intervals?

Not trying to scare you just worried.

Kim 

nash

Thanks, Kim. Yeah, I don't know what the delay in chemo will mean. I don't think mine will be a big deal, since I get it every three weeks. I just liked how my chemo schedule was working out around Thanksgiving and Christmas--I was going to have "good" weeks around those times. I'm more worried about my mom, since she's Stage IV and gets her chemo weekly. She also needs her blood checked every few days since she's on the blood thinners for the pulmonary emboli. We'll see what the cancer center says tomorrow.

My kids are overall happy campers b/c they're off of school all week due to the fires. Although, my kindergartener is really annoyed because he's missing a field trip to the pumpkin patch today. The field trip destination was right in the path of one of the worst parts of one of the fires, so I'm sure all those pumpkins are nicely cooked by now. 

wackyjackie

Nash,

Hang tough.  It must be very scary.  I hope your Mom is doing okay.  I'll be praying for you and your family.

Eve - I hope you're okay--wherever you are!!!

Lot of hugs, Jackie

nash

Thanks, Jackie! The prayers are appreciated.

Things have calmed down in our immediate area. My mom will get chemo today, and I should be able to get mine tomorrow. Things are still burning all over the place, but we were extremely lucky not to have to evacuate our neighborhood. I am really grateful, considering 500,000 people had to evacuate. Just dumb luck not to be in the direct path of things.

DGHoff

Nash, I'm so glad to hear that things are getting back on track for you and your mom and that you did not have to evacuate. I've been thinking about you and Eve a great deal and hoping all is well. Glad that things are calming down a bit in your area and I hope it stays that way.

DeAnn  

nash

Thanks, DeAnn! Hope you are feeling OK and that your counts are good this week.

Just got back from the cancer center. They ended up just checking my mom's blood and delaying chemo until her regular day next Monday. A lot of the staff had to evacuate Mon/Tues but are back now, and one doctor did lose his house. Very sad.  

emg326

We're home and safe. Thanks for thinking of me. Fire came to within a mile or so, but it would've had to go through a lot of stucco and cement to get to us. I do know a couple people who've lost their homes. What a crazy few days! I was hoping to move my chemo up to this Friday, but they're booked. Guess I'll be feeling lousy for Halloween. Oh well, it's my last one. Hope you're all doing well. Take care!

Eve

Monkeygirl61

Yeah!!!  Eve and Nash are safe.  This bc thing is bad enough without all the added stress.  Even though I've been feeling like crap I'm glad to have been laying in my bed in my home.  Sometimes I lose sight of all the blessings I do have and you ladies are among my blessings.  Take care and be safe.

wackyjackie

Hi Girls,

I'm so happy to hear everyone is safe.  Tami, it's true we do have to keep sight of all our blessings.  I feel very blessed also.  And all you ladies have been...not to sound to corny... the wind beneath my wings.  I mean it.  Besides my husband and children, you ladies come next.  I talk about you all so much I think my friends think I'm crazy!!!!My friends and family all cried when Pixie Dust passed.  I trust in you girls for a lot.  Thank you.

So, now...I had my 2nd taxol tx today.  I feel okay right now.  However, my liver enzymes are high.  I never had that problem before.  My oncologist says we should wait until next week for more bloodwork and see.  I still have shortness of breath and she said maybe I would go to a pulmonologist.  Ugh!! Why? Also, she said no neulasta shot for tomm because my WBC is too high!!! She wants to wait and see and I'll go next Tues for bloodwork to see if I need neupogen shots.  I'm a little worried because I've been doing great with neulasta.  Any opinions about any of this??? I'd appreciate it.

Have a great day.

Love and hugs, Jackie

P.S.--i gained weight and feel like a little meatball.  LOL!!! or i should say a big meatball.

nash

Hi, girls--thanks again for all the good thoughts. Was so glad to hear from Eve.

Jackie--I've had the liver enzyme elevation. Was getting really stressed about it, and it randomly resolved itself last week. We'll see what the levels are tomorrow when I go in for chemo. Which of your enzymes are high? My Alk Phospate and LDH went up, but not out of range. It was my AST/ALT that kept shooting up--both got close to 200. Seems to be a reaction to the chemo rather than true liver damage. 

How bad is the shortness of breath? I have it from time to time from the chemo. Is yours pretty constant? And I've been doing fine on neupogen--no side effects, and it raises my WBC after two shots. Haven't tried neulasta.

And I agree--I have no idea what I would do w/o you all. The support has been tremendous, and I feel so blessed. It truly is a sisterhood.

katoMato

Oh Good!!! Eve's back and we're all safe and sound again! I'm so relieved!! I'm so glad you're ok, Eve - it was pretty scairy just hearing about it from where I live. We have family members who were evacuated up by Santa Clarita. They're back home now, and I think those fires are under control. I know they'll get control of the San Diego fires soon. The whole bloomin' COAST was on fire! (well, it used to be bloomin'. now it's just crusty.)

Jackie, are you still on the steriods? I learned that another function of them is they raise wbc's. If not, I wonder why they were so high this time. Curious. No input available here for the Neupogen, but meatballs I understand. It's a condition known as postchemosteriodhotmammaism. And it's fairly common. It's when a hot mamma starts on the steriods and chemo for a certain period of time, and then is finished. The resulting effect is a woman who is bald, rotund, somewhat bumpy and who bears scant  resemblance to the hot mamma she once was, but rather is frequently mistaken for a Meatball.

I think it's temporary. But don't quote me. 

katoMato

Oops - forgot.

I went up to LA (exactly between the huge smoke clouds of the LA fires and the SD fires!) to see my onc so she could put me on Arimidex now for five years. (That rather than Tamoxifen) We'll see how this goes. 

Sorry you're not feeling so well Tami...and I'm glad we can all just hang out in the relative safety of our homes now! Hey - I listened to the Country station all the way into LA - and thought of you! I liked it! - (that in itself was weird. But it was good!)  I'm an old 70's rocker...and country is ...so, well...COUNTRY. But I just may have to give it more "air time" to give it a chance now!

Ok everybody - good night. Sleep tight. (What the heck does that MEAN?) 

wackyjackie

I am laughing so hard right now.  Kaye, you are just the funniest.  You really should be a professional comedian.  I am not on the steroids with this taxol tx.  The taxol drip today was 4 hours and I actually packed a sandwich and ate during treatment.  I NEVER lose my appetite.  NEVER.  I guess it keeps me pretty strong but I feel gross right now.  I did meet some hot mama's who were once hot mama's turned to meatballs and now turned back to hot mama's again.  There is hope!!!! I think I'll have to join Kirsty Alli and Valerie Bertinelli.  Help!! Anyway, that's the least of our problems.  As long as we beat this b/c  it will all be worth it.

Nash, my alk/phos is high..my ast/alt is okay.  my ld is very high.  do you know what that means?  Thanks for the info on the neupogen.  I'm so happy to hear that news.  My shortness of breath is now and then but especially when I breath in hard or sneeze or cough I get a pain on my left side.  I wonder if it's the skin expanders? 

Anyway, thank you for your help.

Lots of hugs, Jackie

nash

Jackie--I don't know exactly what it means if the alk phosphate is high but not the AST/AST. How is your LDH? The alk phos can be elevated from bone and thyroid issues. It's pretty non-specific. I think your onc is right to say wait and see until next week's bloodwork. Hopefully it's just a random spike from the chemo.

Kaye--what was the decision driver for your onc on the Arimedex (vs. Tamoxifen)?

OK, girls, I'm off for tx #4. For dinner tonight I think I may have spaghetti and....meatballs.

yellowtownhouse

Hey Girls,

So glad to hear everyone is home and most of all safe.  I've been 'lurking' this week to try to keep tabs on 'all of you all'.  I've had a bit of a trying week.  Hate to complain because I know many of you have had it rough.....but girls I NEED your help please.  The bone pain just keeps getting more intense each day.  Not so bad in  the morning but increases as the day goes on and is really bad by 6-7 pm each night.  Nothing seems to touch it.  My onc had given me a script for Demoral 50 mg. some time back and I had never had it filled.  Well, we got it filled!  The order was for 1/2 to 1 q 4-6 hours.  The half does nothing and the full 50 mg. just takes the edge off and doesn't even put me to sleep.  I had read someplace on this site about Claritin and bone/muscle pain relief.  Have any you all taken it?  I bought a box of regular Claritin this am and took one and it's now 2:25p and zilch!   I just can't accept the fact of taking Demerol every single day, due to it's addiction properties.  Please give me any and all thoughts you might have or anything you've seen on this subject.  I am in big time pain.

I know one of us went for surgery today and the d...pain won't let my mind work long enough to remember who it is.  Who do I need to keep especially in my prayers tonight you all? 

Nash:  last treatment, God love you!

Kaye:  tell me about the new tx you're starting and why hon.

Jackie:  glad to hear tx. #2 is going good for you.  I've had SOB since tx. #2 of A/C but it has increased with the Taxol.  I do get IV steroids (fairly low dose) each time before my Taxol.  No Neulasta though and so far so good with counts. 

DeAnn:  All still well with you?  Be extra extra good to yourself.

My best to all of 'my sisters.'

June

nash

June--sadly no confetti yet for me--still have 2 tx to go. But I feel like the end is in sight. Almost didn't get chemo today as neutrophils were 1.2 and the cutoff is 1.5. But my onc said it was fine to plow ahead anyhow. I have to have neulasta AND neupogen, however (sequencially). She said to premedicate with Tylenol and Benedryl before the neulasta to stave off any migraines. 

Gosh, I wish I had something to suggest for the bone pain. Does the onc think it's all from the Taxol? I wish I had a clever suggestion, but I don't. I will dig around on google later and see what I can find about the pain. Is it throughout your body? Just in your back? Is any of it muscular possibly?

Hope everyone is having a good day. And that surgery went well for Angie. She said she'd have her sister post updates, so hopefully we'll hear something soon. 

nash

OK, June, I found this article on Medscape that I thought was interesting. It's a small study of women who did 4 A/C followed by 4 Taxol. It says that all the women had excruiciating bone pain. I can't paste a link with my browser, but the URL is:

http://www.medscape.com/viewarticle/514137_4 

Unfortunately, the article didn't say what to do about the pain, so that's my next foray into google for you. Will be back.

Oh--and the article also said our drippy noses are caused by the nose hair loss. See, we knew the nose hairs were signficant as well as amusing.

nash

Alrighty, it appears the pain management is a matter of finding the correct narcotic for you. I did find a list of commonly used narcotics for cancer pain management, along with potential drug interactions. I wonder if there's something on that list for to suggest to your onc to try in place of the Demoral. I know all narcotics can be addictive, but I wonder if some are less so than others? Not sure, that will require more digging. But for now, here's the list I found--

http://theoncologist.alphamedpress.org/cgi/content/full/9/5/571/T6 

EDITED: OK, I looked up all the drugs on this list, and for some reason although they're listed for pain management, they're all anti-depressants, anti-seizure meds. How strange. Back to the drawing board. 

EDITED AGAIN: Well, it seems that the anti-depressants/seizure meds do work in cancer pain. May be something to consider? Here's the link where I found that info:

http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/pain_management.jsp

Gosh, hope that can be copied into your browser. Curses to Mozilla--I haven't been able to cut and past since this site switched over to the new format, and the instructions online how to fix it are completely beyond me at the moment.

DGHoff

Hi June,



I'm so sorry that you've been experiencing so much bone pain. I've had 4 AC and two Taxol/Herceptin so far, but haven't had it too bad except last week when I was in the hospital. My lower back and spine was so sore. Seems to me like Nuepogen was harder on the bones than Nuelasta was.



One thing that did help a lot is I got a massage on Monday and had her concentrate on the specific areas of the back that were bad. It loosened up my muscles some so that the bone pain was easier to deal with. Another woman I know who went through this last spring said that vitamin B helped a bit with the bone pain too. I hope you can get something to help. I hate to think of you dealing with so much pain. Just having had a taste of it, I feel for you!!



I go for weekly Taxol/Herc #3 tomorrow. Thank goodness I got to skip a week. I'm just now feeling like I'm strong enough again. Last week just wiped me out completely! I'll be paying extra close attention to those counts! Nash, when you get your Nuepogen, do they send it home with you or do you go back to the doctor to get those? I'm a mite nervous about having a family member give me the shots, but apparently, people do it all the time.



Glad to hear that all of us are at home and safe from natural disasters for the time being!



DeAnn