January 2012 chemo

NCbeachgal

Nancy-I'm sorry your son is not a comfort to you right now. I don't have children but I think I would want/need that support if it were a perceived option. I can tell you are a very caring parent. Again, I'm sorry.

DianeNMil

Hi Ladies.  realized I havn't posted in a while.  Fighting complete exhaustion again!!  So sick of this.  I only have 2 more of 12 weekly treatment but I am limping towards the finish line.  Neuropathy starting to take hold in fingers, morning nightsweats up to a couple every morning, extreme muscle pain in legs (had an ultrasound last Thursday to rule out clots).  I am working full time this week and I have a sculpture class Wednesday night and I don't know how I am going to make it through the week.  I usually take a nap when I get home and then bed by 9.

Finally found a wig that doesnt look like a big scary wig on me.  Had to 3 day it and in a panic.  Looking more and more like a cancer patient every day and more and more self conscience(can't wait for the wig!! )  I wore a really cute head scarf the other day and so many people staring at me I couldn't take it.  anyone else feel this way???  I just want to blend.

stupid cancer

NancyHB

Diane:  I second that - stupid cancer!

I'm sorry you're having such a hard time finding a wig that you feel comfortable in, but am so glad to hear you finally found something you like!  I'm quite certain that you are beautiful right now, with or without the wig, because of who you are.  I know that doesn't always come out when we look in the mirror, but I know it's true for each and every one of us. 

I will admit that I secretly am enjoying not having hair.  There, I said it - I like being bald. I get an extra half-hour sleep in the morning because showers are a breeze and I don't have anything to style or gel.  And now that the weather is getting warmer I don't have to worry about ponytails or barretts to keep it up and off my neck.

Apparently, I don't look too bad, either (my DH says I'm sexy...and he really means it...and I'm not sure whether I should embrace that or be disturbed by it!)  Don't get me wrong - I cannot wait for my hair to grow back, I miss it, and I'm looking forward to whatever ends up on the top of my head.  But right now, I'm okay with being bald.  I have several Beaubeaus that I wear when I go to school...but otherwise, I don't wear anything.  Not in the house, not in the yard, not even at Lowe's!  And so far, I don't think I've noticed anyone staring - but I've been nervous about it.

Some days I feel like I look like a cancer patient - because I do.  I hate that others can see that in me; I hate that it's so obvious and evident, because I don't want people to feel sorry for me.  But anyone who has approached me has said nothing but amazingly kind things to me about how beautiful I look - and I can see in their eyes that they're being honest.  I am my own worst critic right now.

NancyHB

Angie:  Thanks.  My son is a wonderful young man, just really not in a good place.  He has struggled for many years with physical and mental health issues and I try to be supportive but right now my energy is a little low.  He wants so much to help me and take care of me, and in some ways is a source of emotional support (he lives the closest to me of my five children), but he just can't.  I was hoping that my experience would somewhat motivate him to do some of the things he needs to do for himself, but instead I think it overwhelmed him emotionally.  I do love him dearly and know he loves me; I'm just learning to set good, strong, positive boundaries right now.  Having to do that with several people, actually - this whole cancer thing really brings out the "interesting" in some people!

Janetanned

"this whole cancer thing really brings out the "interesting" in some people!"

Isn't that the truth!  I have learned a lot about the different people in my life!  Of my three children, my middle son (22yrs) is the most upset and concerned about my health.  He is the 'tough guy' in our house.  He had the most trouble going through high school and college, yet he is the most upset by my cancer.  My oldest (24yrs) is the 'good boy'.  He did everything 'right' growing up, great grades, ivy league grad, PhD student, no trouble whatsoever.  Yet he hasn't figured out that he should ask how I am or what he can do to help.  My youngest (20yrs) has been moving away from me since the day she was born.  She never liked to cuddle and as she grew, she fought hard for her independence.  Now, she has taken over the job of mothering me whenever she gets the chance.  Very strange to see how they each reacted to and adjusted to my diagnoses.

I'm so impressed that some of you have the courage to go wigless!  I just can't do it.  Even in the house, I tend to wear something on my head. Now, I must confess, my bald head is not so pretty!  I have a big bump on the top of my head and a bit of a ridge down the middle.  I do have two wigs that are comfortable, so I wear one to work and the other on weekends.  As the weather heats up, I might get more brave and wear a scarf or light hat.  I think the wigs might be a bit hot. 

I do keep you all in my thoughts and prayers.  I've had a relatively easy time with taxol but have read about all the different SEs being experienced.  It just sucks that it won't be easy for all of us.  I keep thinking that we are almost there! Just a few more txs and it will be time to put this chapter away.  Stay strong!

Kitchenella

NCBeachgal google Dead Sea Mud.  You can buy it online. My girls brought home a soccer ball sized lump in a grocery sack.  I'm wondering if that will pass TSA baggage inspection.  LOL

DianeNMil

Thanks Nancy.  I know we are always our own worst crtics.  My medical team kinda barks at me each week because I do to much and I  have been trying to get on as much as possible with my normal life( they don't get that, I guess)  but my physical appearance is the one piece I cant hide too well.  Thankfully my husband is back to being supportive because it is hard to look in the mirror and hard to get ready for work.  I know I shouldn't be looking for outside affirmation but it sure helps when you have someone telling you, you still look beautiful and they are beside you.

I wish everyone a day with laughter.

BelaT

Diane and Nancy,

Agree stupid cancer

Angie, sorry about your son.

Janet, I have 3 kids and totaly different too. My two at home are very concerned while one at college wont even talk about it and cant see me hairless.My daughter at home (18) is taking care of her brother (15) and is been having nightmares twice a week I feel for my kids.

Diane, you are brave, I haven't been able to act normal at all since dignosis:( I think my spirits are broke down.

I am also secretly enjoying being bald

Bela

PS hugs

CharB22

Hi all...I've been off the boards for a bit and have finally caught up.

DianeG - loved, loved, loved the dandelion analogy!!

NancyHB - funny how you're enjoying being bald. I was that way in the beginning. I didn't mind it at all. Now I hate it. It's a constant reminder of what I'm going through. I really want my hair back!!

I had my 1st tx of Taxol 3 weeks ago. I had the horrible joint/leg pain that lasted 3 days. I ended up taking Percocet and crying a lot. After barely getting through that, I ended up in the hospital for 3 days with a "touch" of pneumonia. Two days after being released, I was having shortness of breath and a slight temp. My PCP was on the verge of re-admitting me, but after a lot of begging, I got to go home with a ton of meds. Taxol #2 had to be post-poned a week. Damn!! But I'm on track to have it tomorrow and dreading it. I know it brings me closer to the end, but I am so over this chemo stuff.

CharB22

Has anyone been having trouble with their sugar level? Apparently, since I'm predisposed (I had gestational diabetes with my 1st 14 years ago), my sugar levels have been climbing. Doc says it's from the steroids. So, in addition to chemo and a bout of pneumonia, I now have to check my sugar level 2 times/day. They got so high while I was in the hospital (over 400) that I had to have insulin shots twice a day. Now that I'm home, I'm on an oral glucose medicine to drop my sugar.

I wonder if there's a connection between diabetes/pre-diabetes/gestational diabetes and breast cancer. I know I should have had my sugar level tested about 5 years ago - I was told that since I had the gestational diabetes, I had a 40% chance of becomming diabetic. I wish I had followed through and also changed my diet.

My other big concern is now that I am watching what I eat, I've lost 15 lbs. Not that that's a bad thing, except MO and RO didn't want me losing weight until AFTER I was done all of my treatment. Oh well. I could really go for a Vanilla Milkshake from McD's right about now!!

Kelloggs

CharB22 - my Mom is diabetic and her sugars are usually high when she has an infection also.  Infection and steroids can both cause elevated blood sugar.  Sorry to hear about your troubles with SE's and being in the hospital.  I hope you can get back on track with your treatment.  I did Taxotere which is in the Taxol family and I had the bad joint and bone pain.  I just finished my last TCH last week and it really kicked my butt.  Usually by now I feel much better but I am still dragging ass!  Hope your tx tomorrow treats you better!

DianeNMil

Bela - maybe more denial than bravery! and need to pay my bills (;

Love that you and Nancy like the GI look.  I still have hair but it is soooo thin I look pretty creepy, lol, but I dont have the guts to buzz yet.

Got my wig today...looks great...didn't think a wig could look so good (course it feels awful but I am a women I am used to pain!!!)

Abraxane #11 tomorrow - crawling to the finish

KristinFro

I took my son to his orthodontist appt today. I haven't taken him since he got his license a year and a half ago, but he wanted me to go to "persuade" his orthodontist to take his braces off. One more month, she says... Anyway, she walks in, says hi, then does a double-take on me. "Is that you? You're hair, it's so different," she says. "It's a wig," I said. "I'm going through chemo." She kinda does the up and down look thing, pauses, then proceeds to tell me "I'm so sorry. But it looks great. Very natural." Hrmmm. I've had nothing but compliments on my wig, but this... bothered me. She's never been very tactful, and maybe I'm just overreacting. But now I'll have it even more in my head that I look... off. I should just say to hell with it and go bald everywhere. If I had a bigger pair of cojones, maybe I would. Sigh. Thanks, ladies. I just needed to vent that.

Seagrover

Went in today for #9 of 12 of abraxane and carboplatin. I have about 3 premeds prior to actual treatment. So after the first bag of chemo is done, a nurse walks over to me, tells me to take ear plugs out - here is the kicker, she tells me I have gotten the wrong chemo. Got taxotere instead of abraxane. Three people let this slip by them. Pharmacy sent the wrong drug, and two nurses did not catch that it was wrong till it was over.



Fortunately, I had an appt with the onc after treatment. I do understand taxotere and abraxane are very similar but are different in something to with a protein or something like that. The thing is the nurse told me if I was getting taxotere, I would have gotten totally different premeds. Has this happened to anyone else?

PCBarbie66

Sorry I didn't get back to you sooner...working hard for the few days I feel good enough to do it, and the others I can't use my fingers to type.

Peggy~My MO said she did not like they effects Advil had on my Chemo and that it was a blood thinner so no more than 3 Advil 600mg a day is my allowed max limit.

Karen~I really feel for your financial and mental pain..hope you or some one close hits the lottery Friday!!   I could sure you some of it, hell I bet we could all us some it!

Nancy B & Annie~ I have a sore throat issue too, only hurts on the left side and can be quite severe...then it is totally gone..crazy, and a cough that comes and goes, which can be horrible till I come down and drink some water..then it will be gone for many days..went to the ear, nose throat Doc for my hearing issues and he looked in my throat, all O-K..go figure.

Tomorrow is #5 of 12 Taxol and I hope it is better than # 4.  #1 was bad, 2&3 were OK, 4 was the worst...hope I hit a limit and 5 will be OK. 

on a totally different issue...we did figure out that the Tinnitus gets much worse on the latest Pain Killer Oxy Codeine and I'll switch back to Percocet if it gets bad again this weekend. The Perc's never caused increased ringing in my ears all through the surgery recovery...all those months ago. My Ear Nose, Throat Doc said some pain killers can increase the Tinnitus, which I just figured out this past weekend. He told me to turn on the radio between channels, and the White Noise should help me sleep..gonna try that, as I have nothing to loose.

Good luck to all and I wish a painless weekend to all..incase I can't type again for awile.
Barb

Janetanned

Seagrover - That is really scary!  Now I know why the nurses check and double check my wristband and the bags of meds.  It always seems like overkill.  But after your experience, I won't complain!  Hopefully, everything will be okay and you won't have any SEs!  Wow!

 Is anybody noticing discoloration on there fingernails?  I noticed that a few nails on my right hand were a little sensitive.  On close inspection, I noticed some dark spots under the nail. What does this mean?  Am I going to loose them?

Jennt28

Seagrover: here I sit at my work desk (I coordinate cancer clinical trials) where I have spent my morning submitting docs to ethics committees etc. Happily chewing on my sandwich and reading the boards and you should have heard my intake of breath when I saw your message...

How on earth the wrong drug could get past a centre's checking system is beyond me...  I guess at least you got a chemo drug that is used for breast cancer and not some other drug used for other types of cancers... I'm so sorry that happened to you and I can tell you that the centre staff will be in BIG trouble with their ethics committee and they will definitely be having to review their procedures and staff training.

So now I guess you get to expect different SEs this time? Did they run through the expected ones with you for the drug you ended up getting?

WOW. I'll be shaking my head for a few hours I think...

I'm off in a little while to get my pre-treatment bloods done before my 3rd Taxol/Herceptin tomorrow. The pains after treatment were much less pronounced this time around - I hope that continues. My energy was also better! 

I've organised to take the whole of next week off work (before the Easter weekend). I have been working full-time since starting chemo in January (with just a couple of days sick leave) and am now feeling like it's time to take a breather and relax.

Jenn

riceandbean

hello all,

 we are done with AC today!

"j" is at home and resting...she feels pretty ooky compared to #3 so far...her fatigue never let up after #3 and seems to really be piling on here.

the reason i am posting is that i am wondering if any of you have woken up from a sleep feeling like they could not catch their breath...only to find they are able to breath again after a few minutes?

 reason to call to onc nurse or par for the course?  "j" has had one slight bout with this before, but tonight kinda scared me as she woke up trying to catch her breath.  she seems fine now...and is sleeping peacefully.

i am keeping a close watch.

thanks in advance!

NancyHB

riceandbean:  Congrats to j for being done with the AC!  It is certainly a cause for celebration, even if that means taking an extra hour of nap time.  :-) 

I can't say I've ever had a problem catching my breath while in a resting state, but that happened alot when I was walking.  I tend to walk fast anyway, but found that after a few minutes of walking I was completely out of breath and had to stop to catch it.  If she's waking and having trouble breathing, I wouldn't hesitate to call your MO and ask about it - it sounds really scary and could be a side effect of something.  My MO's office keeps encouraging me to call whenever I have a question - they'd rather know what's going on than have me guessing.  Good luck and keep us updated on j (and yourself)

NancyHB

Seagrover:  I am in shock that you were given the wrong medication.  This is exactly why there are so many checks and double-checks in the first place.  I second Janet - it often is annoying and seems like overkill, but i am happy to continue giving out my name and birthdate if it means they're paying attention and giving me the correct medication.  I am glad you're okay and that you didn't get something that would otherwise harm you.  Someone owes you an explanation of how this happened - and an assurance that it won't happen again, to you or anyone else.  *hugs*

DianeNMil

KristinFRo- maybe she just really meant she couldn't beleive it was a wig because it looked so natural.  Probably you, like me are just taking it the wrong way because you are super self conscience!!  I picked up my wig yesterday and had to go to Mall to get some foundation.  As soon as I got out of the car a women stopped her car, rolled down her window and said 'Your hair is beautiful!!" .  I thought OMG she knows its a wig.  Today is the first day I will use it for work and I am kinda terrified!!

Seagrover - Heres the thing.....I am on abraxane (really NO premeds - because no allergic reaction factor.)  I used to be on taxol and not sure what taxotere looks like but abraxane is a very small bag and it is a cloudy liquid (taxol is a big clear bag). You should be really pissed off.  I am really pissed off for you!!  How can they be sooooo stupid??  I'm sorry.

NancyHB

Off to my second of 6 Taxols.  After last tx's SEs I'm not excited about this at all.  Just hoping the Benadryl gives me a nice, long nap to kill the 6 hours in that comfortable but unpleasant lounge chair.  *sigh*  I keep trying to tell myself, "Only four more after this"; counting backwards now makes the finish line seem so much closer...

I have so much respect for those of you doing the 12 weekly Taxol treatments.  You are truly inspirational!! 

Hugs and love to you all!

BelaT

Diane, I am so tired of being woman may be this makes me feel like man? I told my sister I always wanted to be man and god granted my wish no boobs no period and bald LOL.

Riceandbeans - congrats on finishing

Kristinefro, I know what you mean exactly , happens to me all the time...every day

seagrove, that very unaccepatble , don't you think? I hope you are ok.

Janet, my nails are discolored totally just from AC

Jennt28, yes you desrve a break , you are strong, I havnt worked since Jan. at all.

PCbarbie, i hope you can type, we miss you.:)

Hugs to all

Bela 

Seagrover

Thanks ladies for the feedback. No, the nurses did not give me any idea as what SE to expect from taxotere. My onc is livid and has asked for a full report as to how this happened. Yes, I always have to give them my name and dob before each bag, even premeds. Apparently, the pharm sent over the wrong meds and when they get to chemo, you have two nurses that are supposed to cross check and use a scanner. Unfortunately, I don't know the mixture in the bags but one showed me how the taxotere had an oily substance where the abraxane did not.



I am planning on going to a celebration of life service this afternoon of a friend that had a 15 year battle with BC. She died at 51 last week.



It is really scary to think you place your trust in others and anything can happen. I drive two hours one way each time for treatment because I went to another state for a second op as to treatment. The dr at UAB in ala did not want me using either of the the two onc groups in my immediate area. Must have been a reason he didn't want me using them.



Hopefully, SE will be minimal.

Kelloggs

Seagrover - That's unbelievable that you got the wrong med!  My understanding is that Abraxane is the same drug as Taxotere but it is suspended in albumin instead of the artificial suspension used for Taxotere.  Abraxane is usually given to people who have an allergic reaction to Taxotere.  It is not given as a first line usually for cost reasons, it is more expensive.  The reaction comes from the suspension agent, not the drug itself.  If you made it through infusion without any trouble I think your SE's will be the same as with Abraxane.  I hope I am right.....please keep us updated.

Denise-G

Seagrover - that is just unbelievable that happened.  From now on, I am DEFINITELY asking to see  every bag and every injection so I can read the label before it is put into my body.   You think with all the checking and cross-checking this would not occur!    

CharB22

Had #6 tx today (#2 of Taxol). I ended up sitting next to a woman who's also triple negative (like me). Today was her first tx. It's funny how we ended up next to each other - our dx are very similar only she's 20 years older than me. She was very nice and we ended up talking for quite a bit. She was so happy for me - that I was almost done. I tried to give her some pointers about what to expect. When she left, my nurse (same as hers) thanked me twice for talking to the woman and encouraging her. I may hate BC, but I'm really glad that I was able to help this woman.

Time for another nap! The Benadryl has kicked in.

denjak

JaneTanned: I have discoloration spots on my two index fingers. Just two darker/redish "clouds" moving up my nail. I still have numbness in those fingers. I assume its from the first Taxol I got. I'm now on Abraxane because of bad SEs. SeaGrover-I am upset you got wrong meds. Make sure you make some noise ...and be sure you dont have to pay ANYTHING for the mistake. and get some statement on any effect to your overall treatment plan. I Went to doctor yesterday and I am anemic...too many weeks of low RBC..Between low energy and no feeling in my feet from lovely Taxol I am a sight to see.....Congrats to everyone done A/C!!! CharB22--we are almost on same sched. Funny, I recently was sitting across from a triple negative woman who was supporting her husband's chemo. She is 7 years out...she too was very encouraging to me...funny how we find each other, isnt it?

KristinFro

I had a reiki treatment yesterday at the chemo center. During the treatment, the reiki master concentrated a bit extra on my hands and fingertips. The neuropathy is much less pronounced this morning! Gotta love that. This is my 2nd reiki treatment. Last time, I felt much better for a few days afterward. I'm hoping for the same experience this time

Momof2inME

Kristin... I agree with you about the Reiki. I have had Reiki during all 4 of my taxols txs. I feel so relaxed and (knock on wood) I have only had a tiny bit of neuropathy after 3rd tx for about an hour.

Anyone have a bad taste in their mouth with taxol txs? I had my 4th tx this past Wednesday and today I have the weird taste. Not as bad as A/C but similar. I've also had dry moth and few mouth sores here and there over the past 4 weeks.

Hope everyone is doing okay with the SE's. I'm watching the clock as bone pain will probably set in within the next few hours. At least so far Taxol is predictable...

{{HUGS to everyone}}

Brooke