August 2010...anyone starting chemo besides me?!
Comments
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oh my gosh - I happened to reread my post and now I'm laughing! "two needles sticking out of her head" -- NO - that's NOT what happened! It was two IV needles sticking out of my HAND! LOL!
The doctor left the first two in while he had the rubber band on my arm trying to get the third, because he said it would bleed if he removed them while the rubber band was on my arm.Thanks Lisa - you're right - I'm so medicated that my emotions and clarity are all wacked out. I had some coffee this afternoon and it boosted me a bit and made dinner for the kids ,cleaned up the kitchen and I think I'm just going to take it easy tonight and do something I like. Maybe I'll watch Jane Eyre for the 100th millionth time.............. ;D
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Texasrose - re: itching and red splotchiness. I've been having itchy palms too, and my onc said that the chemo can cause a rash and itching. I don't have a rash, but the itching is wierd.
Calamtykel - Just wanted to send out a hug to you. You can get through this. There is no doubt in my mind that you can. Take some time to feel down. We all do at times. But I know you have the strength to keep on keepin' on! (I say this as much to myself as I do to you. :-)
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Texas: good news!!!!!!! I am so glad to hear!!!!! I would be absolutely delighted as well
JSW: that was a great call on the Gaila website. I received the head wrap in 2 days!!!!!! It is ornate and beautiful, made of silk and it is all the autumnal colors...so wonderful! Thank you so much. I am so pleased with it and it is so warm...perhaps not the best choice for you in FL but it is definitely getting into silk season in the Northeast!
Lisaattheshore: yes, they will leave it in until after chemo. There is NOTHING they can do now. It is not totally deflated by any means but what I don't understand is there is saline in the TE so if it ruptured, wouldn't it have leaked out substantially and been flat already? I noticed this situation 4 days ago. Who knows?!
Calamtykel: you are a survivor but the whole situation can get you down at times. This, however, does not make you any less of a survivor. Don't be so hard on yourself.
Now for some really good news....my head CT scan was CLEAR!!!!!!! YEAH! I am so happy and I also found out that my total out-of-pocket for Emend is only $60! Geez...let the good times roll!!!!!!!
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Lisatatheshore- Funny you should mention wondering if you really are getting chemo drugs. My side effects have been minimal and my hair is very, very thin, but just before my third treament (today) i still have hair and I was told I would be completely bald. So, I asked my onco, how he could be sure the stuff was working on the cancer cells, as it was not having the effect on my body that they told me it would and my body produced the cancer cells, so if my body is strong, could my cancer cells be that strong too. He said that he was sure the chemo was working, based on what it was doing to my blood counts and that side effects vary widely based on many different factors. But I did do a little research on my own, and it turns out that only 74% of people on Taxotere totally lose their hair, so there are 25% that experience thinning of varying degrees, but don't go completely bald, maybe we are in that 25%. But I am waiting to see what happens after today's treatment.
Texasrose- With my allergic reaction to the Neulasta I broke out in a red blotchy rash, pretty much all over my body, three days after the shot. The onco told me to take Benadryl and after taking it the rash went away within 2 hours. They didn't give me Neulasta with my last treatment because of the allergic reaction, but my WBC counts went really low and since I work, I was not comfortable with having no immune system. We are going to try it again on Monday, so we will see. BTW--great news on your incredible shrinking masses!
Calamtykel- We all hear you and hope you find that inner strength to keep yourself going. Every one of us at some point in time has thought, or said, I have had it! Just today I was telling my son that after two surgeries and three chemo treatments and the shots and infusions in between I am done being a pin cushion. I can't wait for this all to be over! But, I will show up to the doctor every time so that I can get my NED and live many many more years! The thought of my kids' graduations, marriages, grandkids...I want to see all that, so I will keep going. You too will find that motivating factor for yourself, you are just feeling down right now as it has been a really bad couple of weeks for you, with the trouble you with the infusion, then trying to find a doctor to put the port in, now the pain from the port. You have had a horrible couple of weeks and your reaction is completely normal. Just give it a couple of days and try to look for the reasons why you are going through this. One morning very soon you will wake up and feel better, with renewed energy and strength. I will say a prayer for you tonight, feel better soon.
Me, I am feeling good. Treatment #3 was a breeze, no problems and much quicker than the other two. I'm tired, but other than that, doing okay. Hopefully the feeling okay will continue.
Debbi
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First, a disclaimer: I KNOW this is something I need to discus with my own doctors, and I WILL!
I am not looking for medical advice about my specific case. Did any of you use Milk of Magnesia and, if so, what is that for? I have never used much of any OTC drugs and I don't know all the variations like the Zyrtec v Claritin question. My onc nurse said there really is no difference as I spoke with her a little while ago. Also, for those of you who used Benadryl for SE, what SE did you use it for? Did anyone use something for heart burn and, if so, what are the heart burn OTC drugs? I had so many questions for chemo teaching yesterday and I really meant to pose them all but unfortunately I just forgot a few. Also, now I can't find the papers with my notes 
Thanks-
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LIZZY! WHOO WHOO ON THE CLEAR SCAN!!!!! i know i am given benadryl with every chemo treatment (its a pre-med)
CALAMTYKEL- I was thinking why her head lol but didnt want to ask (my son had been in the hospital @4 mo old and they put his iv in his head cuz they couldnt get a good vein- i said come on guys he has HUGE veins on his bald head use those!!! and they said they prefer those but parents flip- i am def not a flipper lol)
sptmm62- let me know how it goes on monday! i may ask my dr about skipping the nuelasta if this continues!
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TexasRose, that is great news.....
calamatykel, you are a little too hard on yourself tonight, Yes it does get to you, it got to me so badly after the first round of chemo, but things have calmed down a bit, and I am hoping after all this it will for you too. Today was the first time I really didn't recognized myself as I went by the mirror. It was sad. But we are victims, and we have to deal with that for now. We need to feel our feelings and rant our raves and shed our tears whenever we have to. We are due this, at the very least. We will make our way through this mire. Somedays we will be strong, some days maybe not so much, and it's ok, There is just no sense to be made of it. None of us deserve this I have had to center myself several times, and probably will often. You know it will get better. And I send you hugs and squeezes....
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Still lurking. I asked about Claritin vs Zyrtec at my onc ofc. Nurse said Zyrtec is the same as Claritin with more ingredients so they can charge you more.She said either one would do the same thing.
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Sptmm, I had not found the statistic you found. Perhaps we are part of that 26%. Interesting! I'm gonna go look for it! I found one that said up to 6.5% of taxetore users (not taxol) would never grow hair back. My doc also said he could tell by my blood count. (If it was a conspiracy, he would say that. 99% of the time I am sure I am getting the meds. It is that other 1%... lol)
Lizzy--claritin, benedryl, zertyc--same thing. Generic claratin is loratadine. these are antihistamines. They interfere with histamine production in your body. Histamines are produced by your immune system in an allergic response. I haven't used anything for chemo side effects, as I haven't had any, and also not sure about the products you mentioned, as I have never used those either, but surely someone will jump in! That TE....maybe it ruptured toword the top and the bottom is still filled? Or the muscle pocket it is in kind of 'closed the hole'? I read on another thread about someone patching her TE with duct tape. I can't quite picture what she had to do, or how that would work. At least it is saline that just will be absorbed, not silicone...... So what will they do, wait till after chemo to put in a new TE? Will they do fills on the other or just wait till after?
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Lisaattheshore-don't you have any tax clients on extension? I have a few still to do. So far I have been able to work on them. Hope I still have my wits about me after #2 next week.
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Milk of Magnesia is a laxative - it's not a "natural" laxative and can be addictive. I picked some up because a couple of days after chemo are brutal for me and the colace just isn't helping at all. I think it's to be used with caution but since I only have problems for such a short time each round of chemo I imagine I won't become "addicted".
thanks for all the hugs and understanding. I look so old in the mirror, it's ridiculous. I put my hair thing on today and had a casual dress on and even put on some makeup and I still looked like crap. but I think we're allowed that too, right?!
I'm just laying low tonight, trying to let the port heal up some. It's starting to feel itchy and picky now but hopefully I'll be able to sleep. Deb- you are right - I know it will get better, it's just hard to see it now.
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Chris-- I do, and of course the non-profits!! But once I had my schedule for chemo, I started trying to coax them in a little earlier. It looks like I will be done with chemo on Sept 30, theoretically giving me 2 weeks of no dr appointments. As long as there are no delays, that is. And a couple of them actually came in from the cold and wrapped it up--who knew all I had to do was get cancer!
I was also really worried about the ongoing things...payroll, sales tax, letters--you know! But so far that has worked out as well.
I have been having some one run some checks on me, just to be sure, but so far there does not seem to be a problem. Do you work alone?
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calamtykel I'm sorry you are having a rough few days. You made it through the port insertion and given the trouble they had finding a vein I bet you will be glad you have it during the rest of your treatments. I hope you feel better after watching Jane Eyre or whatever you decide to do this evening.
Lisaattheshore I am finding your conspiracy theory very amusing. I started thinking to myself "well, at least my adriamycin is red so I know they are giving that to me... but it could just be red kool aid!" But since I had a few days of unpleasant side effects I am pretty sure I got the real stuff.
Texasrose Yay for shrinking tumors! That is awesome news. Hopefully when you are done with this chemo there will be nothing left!
Chriscpa You know, if you keep posting you are going to have to stop calling yourself a lurker!
Lizzy Yay for clear scans! And yay for a pretty Gaila wrap! That is so great that you got it in only 2 days. I went for a cotton one, I'm hoping that will be cooler for me down here in FL. As for your question on OTC meds and heartburn, etc - I have not used Milk of Magnesia but I think it is for heartburn. I started getting heartburn a couple of days after my first tx (at first I wasn't even sure what it was, I am not used to having these sorts of problems!) and I took some Pepcid for a couple of days. That wasn't helping as much as I would have liked so I called my onc and got a prescription for another heartburn med. That has really been helping and I have not had any heartburn in the past week. The two main OTC heartburn meds are Pepcid and Prilosec (I think both are also available in generic store brand) and you just take them once a day. Then you can take Tums on top of those as needed. Additionally, one of the nurses at my onc's office told me Benadryl can help with nausea so I might try that next go round as an extra boost against the nausea. For the most part though if you are using it at home it would be to help sleep or for an allergic reaction like a rash or something. During the actual chemo infusion a lot of oncs put it in the IV to help avoid an allergic reaction.
Today I am 2 weeks out from my first treatment and I'm really starting to panic about my hair. I know it is going to start coming out soon and I am dreading it. I just feel like up until now I haven't looked like a cancer patient and once the hair comes out I will. Ugh! It is interesting though to hear what other people's oncs have said about hair loss. At first when I was going to get TCH my onc said I may or may not lose my hair. Then when I couldn't do the Taxotere and we decided on AC/Abraxane he said I would definitely lose my hair and even wrote me a script for a "cranial prosthesis". I still haven't looked into getting a wig, I think I am partly in denial and partly everyone seems to say they are uncomfortable. So instead I have my knitted hats and a couple of scarves. I have heard that my local American Cancer Society office has a "gift closet" with free wigs and stuff for cancer patients so I should go by there and take a look.
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lisa: It was a pharmacist, not a doctor, my bad. He was diluting the drugs and charging double for them or some weird scheme.
http://www.cnbc.com/id/23182570
Lizzy: You must be a lot younger than me. I know what all the OTC drugs are because I have it all: heartburn, acid indigestion, constipation. And this is all pre-chemo lol! Milk of Mag is a laxative and I think it's used for heartburn too. The OTC heartburn drugs are legion: prilosec, prevacid, pepcid, pepto bismol, tums/rolaids, maalox. Like you said, ask the nurse/doc what they recommend. I ended up having to have a prescription drug since the OTC ones weren't strong enough for the mega-hearburn I was having.
Happy Dances all around for all the good news TexasRose, Lizzy and others!
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Calamtykel: I totally forgot to tell you your description of the hospital in Newark was LOL funny!!!! I was hysterical!
Lisaattheshore: I guess they will leave the TE in and then will have to deal with it in Feb. I could really care less and, quite honestly, chemo is way more important than foobs as I won't look too cute dead with my fancy foobs! It is all so secondary. I see your CPA friend, the lurker, is back to discuss extension season!!!! I **live** on IRS extensions!!!! he he he! BTW, thanks for the explaination on the histamines. I just don't know and there are so many names and products out there. Like Zegrin..what the hell is that?! I have never had anything more than Advil and Nyquil in my house. All my pre-bc days!
JSW: I am telling you, even though that head wrap poofs up a bit like a chef's hat, I think it is adorable! I can only imagine how warm my head will feel with my wig AND wrap! No one loves the idea of losing their hair and of course you might be in a bit of denial. How the hell do you think I felt when they told me it might just thin...I had visions of Jason from Friday the 13th!!! Long chunks and then random spots of scalp! Gross! I will be in wig city for a while.
Odd: I was told I can never donate blood again. Ok...so before, when I had bc, I could donate but now, presumably after chemo, when I no longer have bc I cannot donate?! Is this a paradox of sorts?!
Happy trails, all-
Your FEARLESS Leader!
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Lady: I am 40 but I don't have all the stomach stuff. I never had heartburn, indigestion, stomach aches etc... and constipation I could always fix with fiber. I really don't eat a lot of stuff that might hang around either. I eat salad with craisins (love these!) just about every night and have some pc of protein but I don't eat red meat, hardly ever have Chinese food, no fast food burgers/sandwiches, no fried chicken and very little fried food at all, no ice cream (don't like it) etc... I could live on sushi and do like Mexican but not too much. My biggest food vice is pizza. I think for these reasons I don't have too many problems with regularity. I just think everyone is affected differently and all enzymes in the stomach are different for everyone. I also love Subway because of the delicious, fresh vegetables! I could eat Subway and Sushi 7 nights!
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Liz- I too got kicked out of blood donation on my first bought with melanoma. But it was in situ and I didn't have any chemo so I think it's the cancer not the poison. Kicked off the bone marrow registry as well. 2nd melanoma in situ and now bc! Cripes, I guess I'm a lost cause. (c: My new port hurts damn it! Okay I'm over it. Cheers.
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Lizzy - So sorry to hear about your TE, but so glad to hear about your scans. This bc thing sure puts your priorities in order. You are right the cancer needs to be gone before any of the "extras" are needed. You have a great attitude and as I've learned through this "journey", attitude is everything!!!
Regarding the hair thing, I lost my hair at Day 14 and now it's come back about an 1 and 1/2 inches, wisping fine and standing on end and I'm on Taxotere. I just had chemo number 3 yesterday and who knows what will happen. I just know I was soooo devastated by my initial hair loss and now I'm really feeling pretty good in my own skin even with my minimal hair. Hair does not define us, we are all warriors and should be proud no matter what's on the top of our heads!!
Good night all you special women!
Michelle
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Adey i would assume its because the slight chance that A cancer cell could have worked itself into your blood stream without settling somewhere and causing mets i guess.... I was a reg donor before having children, after its like i need all the energy i can get pls dont drain me even if its for a few hrs lol...
But no worries for me i have mets anyhow so i wouldnt be able to donate anything... wonder if that goes to the organ donor list as well... I always assumed if i died i would donate my organs to those needing them- guess not now... Maybe i can donate it to science!!!
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There ya go texasrose, we can be medical cadavers, many, many years from now of course!
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Follow up to the 'you can't ever donate blood again' conversation! I told a partial story! What brought that whole thing up was talking about possibly, if I were to get really sick, having to get a blood transfusion. I totally forgot under what circumstances this might happen but, in any case, I asked if I should put my own blood on hand for the transfusion and they said no because my blood could have cancer in it. So my question is this: if the human body has 10 pints of blood, instead of freakin' chemo, why don't we just get complete blood transfusions? Keith Richards does!!!!!!!! Seriously...that is how he is still alive from what I understand. He gets new blood put in. Take 10 pints out and put 10 in.....is it just me or does that seem wicked simple?! I mean I know at no given time can we be 100% without blood and the incoming would mix with the outgoing but it seems to me, with all this medical genius in the world, couldn't someone figure out how to get clean blood into cancer patients?! It really must be me! I must just see things easily that either don't, refuse to see or it cannot be done. It just makes me wonder!
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On tuesday Sept 7 I had round three of AC. The infusion itself went fine the timing of the day really sucked. I was at SCCA from noon until 10:00 at night to have blood drawn a less than hour lonjg doc appointment and my infusion. . We were literally the last non employees out of the building. It turns out the because the BC patients are the largest group we get lower priority in scheduling. WTH is that. I can see giving little kids earlier appointments but this was plain rediculous. I will be complaining to those who have any authority in the matter.
Otherwise I was told I am doing very well and rather htink I am myself. I do tend to always sound healthier than I feel.
If you recall I had a week off of Chemo and that was because me granddaughter was here along with my son. Wonderful life enrichiung monents of time.
My WBC was more than recovered, over 10. I took my Newlasta shot on Wednesday 24 hours after my tuesday infusion. The only side effect so far is my face and neck are a bit red. NO bone pain!
For Callamity I feel you, going off of the steroids each time gives me a bad feeling. This time we are trying to taper off and I just picked a bitof a fight with my husband which I rarely ever ever do. Strange.
My MIL leaves for home tomorrow and my husband goes back to his travel scehdule which is the toughest part of this all. I was used to him on 100% travel for the last year and now it was so wonderful to have him home since July. I have laways dealt with it but really don't want to this time.
Great news on the clear head scan, woo hoo for you. I think of you all alot! i do adore reading the "you know you have cancer whhen" page so much. I need the laughter it brings no matter how far fetched it seems it always fits.
Love you all.
PS My second round of 4 DD will be taxol and they will give me benadryl because they say a lot of women have a bad reaction to TAXOL. I was however told there is no nausea with it.
My new granddaughter is 4 weeks old today! Hoorah for life.
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Hey Lizzy, you have a litle more than a month to file, so that's LOTS of time! But if they owe you, take all the time you need up until April 15, 2013. Hee Hee...did I just feed into your procrastination?
I think Texasrose is right about the blood donation, although I had not thought about it as I don't donate blood. A few months ago there was a story in the paper about a guy who got a donated (I think) kidney or liver, and the person who died had died in a car accident. The problem was she had cancer and no one realized that she did, and the guy ended up getting it. So of course he sued everyone. Not sure what the outcome was. Of the lawsuit, I mean. He died of cancer. So I am guessing we can not donate organs. Good question though, something else to look up. They can always use our bodies for that "body" exhibit that moves aroundthe world.
And I think 'changing blood' would be something like the theory behind the stem cell transplant...hopefully none of us need to go there! Good job on releasing your inner scientist tho'! If we work on this we may be able to come up with something!
Have you seen this? lifemath.net pick the 'cancer'button. Could not put in the link. There is a good explanation of the statistics portion on another thread, I can put it here if some one wants it. (I didn't write it).
Thanks for the link ladyinbama. I will review this and report back on the potential conspiracy.
Once I calculate how many people are involved, I will be able to calculate how long they can keep a secret. (More people, less time) Then if I can just get my hands on all the statistics on survival coming out of this treatment center, asuming that they are not faked as well, I should be able to find when it started, ummmmm, unless they are very clever and have chosen only every nth patient........(Same thing we do every night Pinky, try to take over the world!) 0 -
Hi everyone, sorry I've been AWOL. First let me get the preliminaries over with (and you'll have to excuse me as my pencil and notebook have been stolen by my 7 year old....)
Lizzy- wow. it makes my heart feel light to hear your news about your scans. Congratulations. Give yourself a big hug from all of us.
Calamtykel- I feel like this too sometimes, it's overwhelming. Allow yourself to be angry. Watch Jane Eyre, (my go to is Pride and Predjudice....mmmm Mr. Darcy). And above all take care of yourself, I really feel like when the brain is out of balance and we're stressed it's b/c we sometimes push our selves too much. I told my kids that this morning we are all lying in bed watching cartoons together (it's Sat am!!) and they were so excited about this. Plus I don't get taxed, I can doze while they get their fix (of me and cartoons, they're perfect pairing). Anyway, I wish for you a couple of hours of rest and rejuvenation.
TexasRose- You kick those tumours to the curb. Clearly you have a very strong body that with the help of chemo is doing the right work. Keep it up. Big hug.
Everyone else- happy Saturday. And I miss Wherria, has anyone seen her???
Sweeney.
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Yikes Ladyinbama, it took 11 years for that pharmacist's wrong doing to come to light! I am kinda sorry I brought this up...........
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Hey ladies!! I was part of the August group of last year and just wanted to say "hi" and tell you ladies to hang in there. I had a lumpectomy last year, was diagnosed with triple negative metaplastic stage 3 in June, had a partial mastectomy with negative lymph node dissection in July and then had chemo August until the end of December (4 FEC & 4 taxotere) and then 21 radiation treatments in February and March. That's my story and I just want you to know that you will get through this. It won't be easy at times but you will get through it!! I am 15 months out from my diagnosis - I'm back to work full time, have my life and my health back. I just get tired sometimes still but I feel great considering. And I now have a full head of hair again!
HANG IN THERE AND KEEP YOUR CHINS UP!! Hugs to you all!!!
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Hi everyone,
I've been keeping up with the posts but not posting lately. I guess just not anything too exciting to tell ... maybe that is good?
After being knocked down by the neulasta shot I felt better for a day and then caught a stomach bug. At first I thought it was a SE but my daughters had it too and missed some school. I was actually really happy to discover it was a stomach bug because maybe I won't feel that bad after each treatment.
I have two TE and was ready to say enough. I didn't want the added discomfort of the fills on top of the SE of chemo. But thankfully the nurse said I was filled enough (after this last time) before I had a chance to say let's stop. She did comment that it looks like my left TE is in upside down. I had been wondering why they look so different. The left one practically hits me in the chin
. I can't wear my normal clothes because I pop out of them. Oh well, at least it is temporary. But I do need to walk around lopsided for several more months. Between that and the hair coming out I'm a sight to be seen! I don't think I'm going to be in that 25% that doesn't totally lose their hair. I lost so much yesterday and this morning in the shower.#2 is on Tuesday. I'm not looking forward to it but I am looking forward to saying I'm halfway done. I have funny ways psychologically of getting thru this. I really focus on dates. I don't know why, but it helps. I won't allow myself to say "halfway thru" until the SE are over. Once they are over I can coast thru September. Then I have 2 in October. I can make it.
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My father died with colon cancer and they didn't want any of his organs after he died. I hadn't thought about that but I guess I can take "organ donor" off my driver's license now.
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I think we may be able to donate blood again in the future, on the American Red Cross website it says you can donate again 12 months after completing treatment as long as you have had no recurrence. I hadn't thought about the organ donor thing, we might be excluded from that now but we should certainly be able to donate our organs/bodies to science.
When I looked in the mirror this morning it looked like my hair was thinning right at the center of my forehead. But then when I brushed my hair only a few strands came out. Hopefully I've still got a few days left.
I'm settling in now for my usual fall Saturday - watching College Gameday on ESPN and then college football all day. Go FSU beat Oklahoma!
And Lizzy I'm thinking of you today and all those who lost loved ones 9 years ago. Hugs to you.
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Hi everyone. Sorry I've been MIA lately. Having a very difficult time emotionally, and may need to delay chemo to get some psychiatric treatment. Don't know yet.
But I've been doing my best to keep up on how everyone is doing. I've missed too much to comment on everything that's been going on with all of you, but please know that I've been holding you all in my heart, the good and the bad, those for whom things are going well and not well. This group means a lot to me.
My best wishes to you all for a good weekend.
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