Anyone starting Chemo in August 07?
Comments
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Hello Everyone,
I wanted to let those of you starting Taxol that my first tx yesterday did seem easier than the AC. I slept well last night and feel no naseua today (usually I woke up sick with AC). I have a headache, but that's it. The benedryl knocked me out during the infusion and pretty much when I got home I slept too.
Eve: I am so sorry about your loss!
Jackie: I had to argue with my doctors office to keep getting emend. My insurance said they would pay all the way through treatment, but the nurse kept telling me I wouldn't need it. I would so much rather take it and know for sure I won't feel sick than not and hope I don't. Try to push it with them to get the Emend if you can. My onc told me he would keep taking it if it was him and so he talked to the nurse about just filling the script and not trying to disuade me.
Kaye, Harley, and everybody else- I hardly post, but I always read and your guys are so inspirational to me. I try to get on here everyday. I read these posts before my emails because you guys are sort of my invisible support group who really understand what's going on. Thank you for that!
Kidsmom
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Jackie,
Yes, my hand got swollen, but not my arm. The joints hurt... my onc is getting me a referral to an LE specialist, but my surgeon thinks I don't need it, and my dh now agrees... ugh...
But, it seems the swelling has gone down, and it doesn't hurt as much. In fact, it is starting to feel more normal again. My dh didn't think the Neulasta shot had anything to do with this, but my surgeon agreed wholeheartedly. He said "these are strong drugs that she is getting"... I am SO glad that my dh heard that. Maybe he'll understand a little better what I'm going through, even if my se's have been minimal...
DeAnn,
Welcome! Please keep posting here. Chemo is NOT easy, but it's definitely doable!! Glad you found us!
Good Luck!Eve,
So sorry to hear about your loss! I'll keep you and your friend and her family in my prayers.
Hugs,
Harley
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Hey Ladies,
Harley, I'm glad to hear the hand is feeling a little bit more normal. I don't think an LE specialist would be a bad idea, but if you can't, you can't. There is tons of info on-line that should help in the future. I was reading this morning on the recon threads and there are quite a few ladies there who deal with LE. One thing I'd not thought of was flying...the pressure in the cabin exaserbating (sp?) LE. Hmmmn. One more thing to watch.
Jackie, I'm so glad you had a great night out with your dh - sometimes we just need to be NORMAL even if it's for one evening. And when you said your eyes were shrinking...I thought EUREEEKA!!! That's why I think my eyes are puffy...my EYEBALLS MUST BE SHRINKING. That explains a lot. Maybe my brain is shrinking, too. That would explain even more. HOWEVER. It DOESN'T explain my abdomen. (Are they all draining into my abdomen? Oh, whatever.)
Kidsmom, It's good to hear that you're doing well...we need you too!
Nash, I checked out the Her2 board you were talking about. I'm not Her2 pos, but I am curious...What a great site! Lots of really good info there. It would be good if bc.org had a list of sites that might be of interest to us. I know there is a LE site because I saw it a few months ago, this Her2 site and I know there must be reconstruction sites out there, clothing sites catering to mast gals, etc.. (Maybe there is a place on bc.org that has that and I just haven't found it yet. Always a possibility!)
Have a great day, ladies!
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Kaye--I PM'd you with my e-mail. There is a board on here for recommending resources, but I haven't spent much time checking it out. If you scroll down the main menu, it's towards the bottom.
Eve-I e-mailed you. I'm so sorry about your friend.
kidsmom--I had great success with Emend. Glad you doc is on board with you continuing for the rest of your chemo. It's so exhausting to be nauseous all the time.
Hope everyone is doing OK.
Stephanie
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Nash -
I found the San Diego get-together thread, and hurled myself into it. I figure I can crash that party...why not? Thanks for telling me about it! It's as good an excuse for a weekend away as any other I can come up with. I'll be so ready for a vacation by then!
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Hi Everyone,
Thanks for the welcome to all of you!
First, I want to say to Eve that I'm very sorry to learn about your friend's passing.
Jackie, it was great to hear about your great night out. I'm going to a wedding tonight, so maybe I will have a glass of wine after all! It sounds like it might be just the ticket!
I start 12 weekly Taxol/Herceptin on Friday. I'm supposed to probably do radiation after that, but will supposedly be squeezing in my implant exchange before rads. My PS says that we will have fewer complications and the studies are showing it is better to do it before radiation. I'm just taking it one day at a time for now and we'll see what the future brings. Glad to hear that Nuelasta is pretty typical for weekly Taxol. I have a 4 year old in preschool and he brings home every bug known to man so I need to keep those white counts up!
Oh, and my watery eyes are already getting much better and are almost back to normal, so take heart, it does stop eventually! I do have a nice new problem to deal with though, an anal fissure. The fun just never ends, I guess.
Hope you all have had a good weekend.
DeAnn
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Kaye,
It seems that overnight, it gets worse. My hand is hurting, and I can feel how swollen it is, even if it appears to be getting better. I guess it will take time.... .....sigh I'm not a very patient person!
If it is still feeling weird, and the LE center calls me for an appt., I think I will still go, just to have it checked out. It can't hurt.
So, your last tx is Oct. 3rd?!! Wow, that is coming RIGHT up, on Wednesday! Can we switch? lol I DO SO want to be finised with the tx...
Good luck with your last tx. Congrats! What is the next step of your treatment plan?
Harley
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Hi Ladies,
Nash - I found the resource thread. I knew deep inside it was too good an idea for me alone to have thought up!
Eve - How are you doing today...?
DeAnn - SO sorry about your "nice, new problem". Sheesh. You poor thing. I hope it gets resolved QUICKLY.
Harley - Sorry to hear the hand still hurts. I haven't looked at the Lymphodema thread...are you supposed to keep it elevated, or sleep with a special glove on, or wrap it or suck on your fingers or SOMETHING?
To answer your questions:1) NO, we can NOT switch. However, you CAN do it FOR me if you wish. And 2) The Next Step for me is rads in Nov sometime. No date set, haven't met with the rad onc yet. THAT chapter of this book will be done down here locally. I can't handle the 2 hour drive into Los Angeles anymore. So that alone will make life much easier.
Feelin' good! (For another 3 days.)
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I'm glad you found the threads I mentioned, Kaye. I'm not clever enough to post links. Also glad you're going to try to make the October San Diego lunch--hopefully I can make it in November. Although I have a feeling I won't be able to pull myself together enough until after chemo is done. Which isn't until mid-December. Ugh.
DeAnn--hope the wedding was fun! Sorry to hear about your anal fissure--what a pain in the butt! (sorry, it was begging to be said.
) But seriously, what a drag--I swear the chemo is eating a hole in my innards sometimes, so I'm not surprised to hear of your woes. I would love to have a glass of wine. I've held off on social drinking since I started chemo b/c I'm terrified of frying my liver further--my liver enzymes doubled in a three week period, between chemo rounds 1 and 2, so that now they are outside the normal range. The onc ordered an extra liver panel for me on Monday, before next Thursday's round 3. I'm not sure what to think. I'm going to try milk thistle, b/c it's supposed to be very cleansing for the liver. I'm probably doing more damage to my liver with my unchecked diet coke addiction than from a glass of wine, so I should probably just not worry about things so much. Cheers!
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Kaye,
Not really sure what I am supposed to do. I've gotten lots of advice from my drs. nurse... keep a warm compress on it, keep it elevated, massage the arm/hand... wrap it tightly with gauze or something... I think I may try to wrap it somehow, or someone on the LE thread posted pics showing how she made a LE glove by buying a pair of cotton gloves, cutting out the tips of the fingers, and putting double stick tape on the fingers, then sticking velcro on the tape. She stuck some kind of foam pieces onto the velcro... It seemed simple enough. I think at night it seems to get a little swollen all over again. Maybe if I sleep with these gloves on, it will keep a constant pressure on the hand, and keep the pressure down...
Oh, I wouldn't want to switch places with you, since I don't have to do rads. I will have my reconstruction Nov 7th, and I am hoping to delay taking the Tamoxifen for a couple of months, maybe til January....
I have decided that I think I will have a glass of champagne after my last tx!!
Glad you are still feeling good! I'll be thinking of you on Wednesday, Oct. 3rd! I am SO jealous!
Hugs,
Harley
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Hey Nash - Thanks for the first good laugh I've had since my newest woe. Now I know exactly what to say when people ask me how chemo is. "It's a real pain in the butt!"
The wedding was fun, but I hear you on the wine and liver fears. I haven't had any alcohol or refined sugar, or a host of other things since starting chemo to keep my liver from being taxed. But it sure felt nice to be sort of normal tonight and mingle with folks with a glass of wine in my hand. Well, as normal as I could be wearing my platinum blonde wig. (Seemed like the most festive choice of the multiple wigs, hats, scarves, I own.)
DeAnn
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Hi Everybody,
Kaye, thanks for checking on me and to everyone else for their condolences. The maginitude of this loss has yet to hit me. I start to think about it, and I push it out of my head. Complete shock and denial. I've also been extremely busy with kids' sports this weekend which is a good thing. I'm already getting sick of wearing scarves and hats, but I guess I better get used to them. It feels so good when I take them off! Hope everyone is doing well. Take care of yourselves and have a good week.
Eve
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Nash -
Your liver enzyme situation is very interesting to me. I had (asymptomatic) Hepatitis C going into this bc stuff and I was freaked about my liver. My onc told me after tx#2 that my levels were "really" good.. (Better than what? Normal? Just what exactly do they mean by "really" good?) I have to keep reminding them that I have HepC. Interesting. I'd taken Milk Thistle a few years ago pretty faithfully. Maybe it really did help. Keep me posted on how you do. And Yes, I'd been completely addicted to Diet Coke too - until a reeeeeally bad kidney infection put me in the ER, and deliriously sick for an entire week...so now I have MAYBE one a month, if that. I KNOW Diet Coke(or any carbonated soda like that) doesn't help. I've cut way back on the coffee consumption, too...just in case. It's the only liver I've got. It needs to stick around and do it's job.
Harley - I'm lost. Why did they cut the ends of the fingers of the gloves and put double stick tape (and foam???)on the fingers?
Ok girls. I dreamt two nights in a row that I had hair. It must be affecting me more than I'm aware of.
Have a good night!...I'll try to dream this time that I'm thin.
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hey girls,
my onc says i need to get the flu shot. i've never had it before. i'm really scared. i hardly ever get sick (except for cancer!!) please reach out and let me know if you are all getting the flu shot. my onc said i should go tomm. thanks...
hugs, jackie
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I get a flu shot every year and was going to ask about it at my next appt. I assumed I'd need it this year as we need any sort of protection from illness during chemo. It's not a big deal, and they do not use a live virus as some people think. Your arm just might get a bit sore.
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Kaye,
Well, I'm not sure why she cut off the tips of the fingers, but the tape and velcro is to keep the foam pieces on the gloves. You need to have some kind of 'compression', or pressure on the hand, where it keeps getting swollen... thus, the fingers and the back of the hand.I had a call from the physical therapy center, and they won't have an appt. for me until Oct. 17th.... so I guess I'll be suffering until then... it's in Wilmington, too.... Nothing is ever easy!!
It would be good if we had these dreams (like the one where you had hair) and they came true...
Good Luck on Wednesday! I'll be thinking about you, while I sit with my arm and hand propped up, trying to get the swelling in my hand to go down...
Harley
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Kaye--liver enzymes. Glad yours are holding steady, especially with the Hep C. I'm off to buy milk thistle. I'm sure that's helped your liver immensely. I just got back from the cancer center, where they pulled the extra chemistry panel early before my next chemo, and now the AST and ALT doubled AGAIN, this time in a 4 day period. Yikes!!!!!!!! How high are these puppies going to go?!?!?!?
Also, my tumor markers doubled in a three week period. They'd dropped in half after my lumpectomy, and now they're higher than when I had the tumor in me. I'm not sure what to think about this. I guess we'll just see what they are the next time they get pulled and hope that it's not from the cancer setting up camp again someplace.
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Kaye,
Yes, glad your liver enzymes are maintaining....
Why do they measure your tumor markers? They don't measure mine... Should they??? Now I am starting to worry...
Harley
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Some oncs use tumor markers, some don't. Your onc may only use them for Stage IV patients. My onc uses them for everyone, even while on treatment. I don't think there's a right or wrong approach--it just varies by doc.
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nash,
Thanks! I think my first onc used them, but this onc doesn't. I do wonder sometimes if this guy knows anything. He hasn't ordered any tests, and I only saw him once since my txs began. My next, and last, on Oct. 9th, he won't be there, either. I'll see his nurse.
Thanks
Harley
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Hi Harley,
I was wondering about the tumor markers too as my onc does not do them. I did a little research and, apparently, there is a lot of controversy over them because they aren't that reliable. You can have normal levels, but still have cancer, or you can have elevated levels, but no sign of cancer, so they don't necessarily tell you all that much. Consequently, many doctors don't use them as a diagnostic tool. I'm kind of glad my onc does not. One less number to worry about.
DeAnn
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Nash - We got the Milk Thistle online. It was a good quality form of it. They had a deal where they sent it to you every so often like a "Milk Thistle of the Month Club" and it was cheaper that way. It's called "Maximum Milk Thistle". We got it from liversupport.com. (I think.) (dh will have to do the link for you tomorrow because: i am an idiot.)
What could be affecting your AST and ALT; The chemo? I need to do a little research to find out exactly what that represents. Do you have your blood done every week - is that how they knew they had gone up in 4 days? I can only imagine what this is doing to you. Good grief.
Hang in there Nashie....and the rest of you, too.
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DeAnn,
Thanks... I also think there is no point doing tests, if they are not reliable... We have enough to deal with, so why cause more worry, if we don't need it?Harley
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Hi, girls. Kaye--thanks for the "Milk Thistle of the Month Club" info.
I will check it out. The 5-FU that I'm on is very hard on the liver, so I'm sure that's what's affecting the AST/ALT. They do check my blood every week. When I saw the onc last week, I pointed out that the liver panel values had doubled, so that's why she ordered an extra chemistry panel for Monday. They were pulling blood early anyhow b/c my WBC was low and they wanted to see if I needed more Neupogen. I get tx this Thursday, so we'll see what the liver enzymes are again then. I agree that the tumor markers can be unreliable and unnecessary, but they do have their place for patients who are sensitive to them. Tumor markers are reflective of disease progression for my mom who is Stage IV. Hers were rising again over the last couple of months, the onc scanned her earlier than planned, and switched her chemos again b/c of progression that the scans picked up. She has had just two weeks of the new chemo regimen, and already the markers have fallen ten points. So the markers do have their place. I just don't know at this point what they mean for me personally. I guess we'll find out.
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HI Everyone,
Just had to share some good news...BRCA negative!! I'm so happy for my daughter's sake. I feel like part of the weight has been lifted. I also had my first "expansion" today. He put in 140 cc's which is a lot, but so far it feels okay. I should only need one more before the exchange surgery. Chemo #3 on Monday. I'll be 3/4 of the way there!! Hope you're all doing well. Hang in there!
Eve
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Eve, that is great news on the BRCA results! It's always good to hear about getting some good news. Glad to hear the expansion went well too. It feels kind of weird, doesn't it. I felt like I was being compressed and stretched all at the same time. Fortunately, I have only needed expanding twice. (One of the hidden benefits of being an A cup, I guess.) Good luck with chemo #3!
Nash, Thanks for the extra details on the tumor markers. See, if it weren't for all of you out here sharing info, how would we ever find out about this stuff?
On another note, has anybody else experienced weird tongue pain due to treatment? It's not a sore on my tongue, but it is super painful just on the sides of the tongue in the back where it sort of connects to the mouth. Almost like an acutely sore muscle and it is slightly swollen too. My soft palate is also swollen. The magic mouthwash doesn't do a thing for it, but Ibuprofen helps a little. Very weird. I'm the queen of strange new side effects this week. I sincerely hope that the new Taxol/Herceptin regimen I start on Friday will not produce a whole new set of freaky effects.
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You know what I just love? When I do this post, and I'm careful to remember things I want to ask people, then I go to refresh my memory on a prior page and come back to find MY WHOLE POST IS VAPORIZED. It's my fault, i admit it. I didn't save it to my Word document but it reminds me of my brain. There one minute, and the next - POOF -
.Sigh. Ok. Here I go again...
Nash - How are your bilirubin levels? My SIL is a critical care nurse at City of Hope and she said they would be watching those closely as well. I'm so sorry you're going through this. Here's hoping they're back down (a little) by Thursday.
Eve - Congratulations on the BRCA neg. result! That has been an area of confusion for me (yet one more!) as my dh's cousin and her mother both had bc, the cousin took the BRCA, it was negative - so I thought "what did that tell?" They both had bc, but the test was negative! My onc suggested that rather than me take it, my daugter should take it instead. That was an interesting take on the subject. Her theory was that we already know I can develop bc, because I have it. I'm choosing to ignore it for now, because I don't want to think about anything. period. (Yes, that big, feathery thing is my OSTRIDGE BUTT, because my ostridge HEAD is sticking deep in the sand over here.)
I'm up tomorrow afternoon for FINAL T/C TX#4. Feeling great now, not looking forward to the "lost" week, but I know it will be over before I know it. If I just WAIT and be PATIENT I know time goes by (whether i'm having fun or NOT having fun...it goes by. Relentlessly. That's what I've learned in 53 years.) and then things begin to be fine again. I'm so grateful it hasn't been any worse than it's been...I feel guilty that I've sailed through it so easily...despite my complaining about my fried brain, and my bloating and constipation and twitchy eyes...it could have been SO much worse. (I could have had fissures in places that I wouldn't WANT them...you win, girl.)
Hang in there, ladies...We're going to make it.
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Eve--that's great news on the BRCA. I'm glad you had something positive coming your way this week. When I had my BRCA testing done, I didn't realize how nervous I was about it until mine came back negative. Big relief.
DG--haven't had weird tongue pain, but did have weird uvula pain last week. Went away after two days. Hope your weird pain does, too. As far as your new tx, my mom has been on Herceptin for three years straight, and the worst part of it for her has been "Herceptin schnoz", where her nose just randomly drips. The Taxol can cause neuropathy, and some gals say keeping ice packs on their hands during infusion helps keep that minimized.
Kaye--yay, yay, yay! So glad your last treatment is almost here! Thanks for asking your SIL about the liver stuff--my bili levels have been OK, so maybe there's hope that I won't tox out.
It's a little scary, b/c my onc is a complete dud--among other things, I have to point things out to her (like my liver issues), then she acts on them. I should really get a discount on my care. I should also really get a new onc, but my options are limited, so I stay put and hope I can vaguely keep my wits about me. -
Kaye,
Good Luck with your LAST tx! Congrats! I'm thinking of you ALL DAY!, and wishing it was my last today, too, and not Oct 9th... I have to wait a week.... but it'll be over soon!Oh, don't feel guilty because your txs have gone easily... mine have also gone pretty easily, in spite of some bad diarrhea the 1st tx, and stomach cramps, and runny nose and watery eyes... it really hasn't been bad.... not that I would want to do it again, mind you.
Hope it goes easily for you...
Harley
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Kaye,
I can't believe this is your last treatment. I am thrilled for you. I hope you do great and we hear from you soon. God Bless You and your family.
Lots of hugs, Jackie
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