November 2009-Starting Chemo

kayh

Hi Ladies, sorry I have not posted for a while. I do read the posts when I can. I am 6 weeks post taxol and I have bad neuropathy. Started 3 weeks prior to last tx with pins & needles in feet and hands and has progressed to feet feeling like the dentist has given me shots in the feet. Numb up to the middle of the calves and so weak in the legs that I can only walk a short distance with the aid of a stick. Pain in the legs and hip wake me up at night. Popping pain killers like lollies.

Did not have a scheduled appointment with Onc Dr. until July but managed to get in today. She has arranged for a brain scan for me on Thursday. A bit of a shock really, as you know what she is looking for.

Anyway on a lighter note, I had number 10 of 30 radiations today, and I have had no skin problems so far, just feel a bit sore.

Loving the hair pictures.  Mine is growing but it is invisible.  I can feel it but I can't see it.

suzieq60

Kay,

 I'm so glad you're still out there, I had been worried. Sounds like you've had a tough time. Hugs from all of us.

Sue

Melinda41

KayH: Please let us know when you find out something. We worry when people don't check in. I feel bad wishing you unresolved neuropathy, but I do, since it is better than the alternative. Glad you are 1/3 done with rads! The invisible hair is fairy hair, it is secret hair for special people!

Anybody else have people always asking, so don't you feel better yet? Sorry I am not bouncing back fast enough, I just had last chemo a few days ago, I will get bouncy ASAP. (yeah right)

Cafelovr

Kayh, we're right there with you! I'm sorry for the neuropathy. Will a nerve block or something like Neurontin help?  An old wives tale says that if you put a bar of soap under the sheet at the foot of the bed near you feet will stop any type of aches and pains in the feet/legs. I've never tried it, but my boss/friend swears by it!! What will they come up with next!

BrendaSharon

"Warriors"

I HEARD FROM CCNANI!!!!~~~~~~~~~Will give details when I learn a little more!

I am so happy just to have heard from her you just don't know. I feel like a weight has lifted off my chest. I don't know details, but she is OK. Thank you Sweet Jesus, AMEN 

Kayh,

Sooo happy to see you also, I have been letting things get to me lately on site. when you girls don't say anything I get scared. I hope your pain subsides fairly soon. Please let us know how things go with your scan.

I can't be on line much today, I have BIG BOSSES due in and I have a lot to do, but I had to get this message to all of you ASAP as I thought you would want to know thhis as well.

Love to all the "Warriors" Brenda

mommy2two

Brenda - Thanks for keeping us updated!  Look forward to hearing more about CCNani.

Kayh - Good to hear from you.  Sorry about your neuropathy, keep us updated please!

(((HUGS)))

Melinda41

Linda: Does any soap work or does it have to me Lye soap made from mountain rain and hickory wood ash. I don't have any of that, but I have some Dial I can try. I want to go back to bed just so I can see if this works! Aww, who am I kidding, I just want to go back to bed!

doronet

I kid you not...I was having terrible leg cramps during chemo and put a bar of bath soap at the foot of my bed after I read about it on this thread, and for sure, I stopped having the cramps.  Seriously.  I don't care if it was just a placebo or not, but at that point, I didn't care.

Sorry to hear about the neurapathy, kayh.  I was wondering if Neurontin would work for you, too.

I haven't had anyone ask if I was feeling better yet.  Can't believe you are getting that, Melinda.  Some people are such idiots.

Soooooooooooo glad to hear CCnani has been in contact.  Can't wait to hear how she is!!  Let us know as soon as it's safe to get back online, BrendaShar!  

Happy Tuesday to all!  Nette

suzieq60

Brenda: I was about to write and say that maybe CCnanin had lost internet access for some reason. I knew she was OK - I'm glad we can stop worrying. Now all we need is for SharaD to come out of the woodwork. I do miss her humour.

Melinda: I noticed on the weekend that I was feeling really well - apart from the leg aches. So, it's taken 8 weeks for that to happen. I hope the SE's aren't too bad from the last one for you.

I'm not doing as well as I thought with the rads. I now have a sore spot under the boob in the crease. Looks like the skin has rubbed off - ouch!!! I see the doctor today, so I'll show her. They did warn me about this happening. Only 7 to go now, so it could have been a lot worse.

Herceptin today too. I'll have to come home between the appointments for about an hour. Didn't like sitting in the waiting room last time. I'd rather put the emla cream on at home.

Sue

mabelle

Just came home from my first "naked" herceptin. That's what my onc called it and I like it - so I'm keeping it. 35 minutes from stepping into the clinic to out. No dopey benedryl or steroids, and I'm feeling pretty good. We'll see how it goes for the next day or two. 

I met two wonderful women sitting with me in the chemo room. The chattiest ladies I've met so far. They both were in for their second go-rounds with b. cancer. They were so positive and hilarious I had no time to feel scared or worried about whether I too would end up back in the chemo seat one day. Knock on wood!! It was great to meet them.

I heard the soap story about stopping night time coughing. I tried it the last time I had a bad cough... and it worked for me. Now I know it must be a placebo! But - so long you believe it and it works... who cares. By the way, I used Ivory. 

My hair still looks like an old man with a receding hairline. But at least its starting to grow... sort of.

And...I think I might have lost a pound - very exciting stuff!!!

take care girls! 

Sherri_V

I have an appointment to see the radiation oncologist on Thursday.  It's my first appointment with him.  What do they do when you go in for the initial consultation?  How long is it usually until they start doing the radiation?  This may seem silly but do they charge you a co-pay EACH day as you go in?  I hate to think about paying $25 every day for 33 days!

BTW, I had leg cramps BAD and the soap helped me.  I have Irish Spring under my sheets

micheleboots

Mabell, yahoo for you loosing that pound...you go girl..So is a Naked Herceptin mean that you are actually naked....wow....that must be one crazy freaky place..all those naked people...ah my eyes...

Brenda, I am so glad to hear CC is ok...I hope she keeps in touch...I think some simply just move on after everything is over...perhaps it is a way to get rid of all the cancer shit...leaving it all behind.  We can't take it personal, they just have to move on.  I myself find comfort in keeping in touch.

Hang in there Sue, only 7 more to go...my worst reaction was after it was done.  like they said...two weeks delay...and like clockwork tow weeks after my last treatment I started to clear up...now I only have a slight tan..

Kay, DON'T GO TO THE DARK SIDE...think positive.  Big hugs, to hold you over until you find out what is going on.

MaryNY

Hi Sherri: I think my initial visit took less then an hour. On that visit I met first with the radiation nurse. She went over all my records and put them in order. She also took a detailed history. Then the onc came in. She reviewed all my records and told me how many treatments to expect. She also did a breast exam. She then passed me on to the head technician who set up the appt for the mapping/planning. That second visit was the longest and was about a week later. That was the most difficult as I had to lie still for so long.

You might want to call the office to confirm the appt. That way you can ask how long to allow for the appt. I find it takes a lot of stress out of the situation when you have more of an idea what to expect.

I have heard of someone who was charged a copay for every radiation visit but I think that's unusual. I had just started rads in late Feb when my insurance provider changed. The first insurance company covered radiation treatment 100% but with my current provider they pay 90% until I've reached my deductible, then they pay any balance at 100%. I still haven't been billed. I think most places bill by the month. When you go for your appt on Wed, you could ask them to check for you or your could call your insurance company directly.

Melinda41

My kids were excited today when I emerged from the shower and my hair was actually wet! Until now, it has been like duck feathers and water rolls off of it. My 10yo DD kept ruffling it up, she was so funny. She combed it into a faux hawk, a really little faux hawk.

I have put the Irish Spring under my sheet, we'll see how this does. I am scared since Irish Spring is "invigorating" and I am pretty sure that is the last thing my legs need while I try to sleep through the hot flashes. And what if the night sweats make me sweat so much the soap starts to lather. I will wake in a bed full of invigorating bubbles.

Cancer sucks.

suzieq60

Had my naked herceptin today - only 10 to go. The radiation treatment went really well. I got there early so the doc saw me early then I went in for the tx early and left just when I was supposed to have the tx. So I had a bit more time up my sleeve between treatments. I showed the rad doc the raw spot and she didn't seem too concerned. I've been using a cream called Dermaheal on it and she said to continue to use it.

I might try the soap thing too. Do you put it under the bottom sheet? Melinda, you are too funny. I can just imagine the bubbles

Sue

Cafelovr

I cried over CCnani! I'm grateful all is well. Please follow up with us! It's hard for me to see when someone has lost their battle. It hits close to home for me.

Sherri, I met my RO on May 5. Took about an hour. She discussed what will be radiated and the benefits and risks of radiation. Typical medical stuff, plus talked about personal stuff to get to know each other. Yesterday I had my mapping/planning. They took a cast of my upper body, gave me a CT Scan to pinpoint the beam and gave me 4 tatts. I'm having 4 places radiated on me. That took less than an hour. I go next Wednesday for a chest x ray and start on Thursday. Fun times ahead.

mommy2two

Sherri- I have Aetna and they pay 100% of everything after I pay a $30 deductible.  They combined all of my co-pays and once I was done with tx, I started making monthly payments.  Good luck with rads!

Melinda41

I wonder if we get to keep the cast from radiation? I have no idea what the cast is, but I want to keep it!

No suds in the bed last night.

Today, I am going to the YMCA for my first training session with a pink trainer person, someone who is trained in post mastectomy fitness. I have my lymphedema sleeve and ready to get to work. I used the push mower for the first time yesterday, wore my sleeve and had no problem. I still haven't tried the weed eater.

I have made up my mind that I will officially start feeling better on Friday. That will be the first day that I should have had chemo, but didn't. So for my friends that are expecting me to feel better already, I will let them know to check after Friday.

Naked Herceptin... sounds interesting, what kind of party favors are appropriate?

BrendaSharon

Linda, No need to cry, except happy tears.

All is well as can be expected for everyone. I do feel bad for all y'alls pain caused by the taxol & Herceptin though. I am hoping you can find something to aliviate the pain.(hope the soap works)

Suepen,

If you have an Aloe plant use some on your breast, it is much better than any cream what so ever !!!! The radiation techs told me this. it is hard to find pure aloe in a bottle without a added preservative, because they can't bottle it without adding something, that is why the plant's aloe is better so much better, no dyes perfumes or additives of any sort.

Melinda41

BrendaSharon: I have an aloe plant but have only used it on small kitchen burns. How did you use it on a larger area? Does it smear well? I am thinking I would have to use so much of it I won't have a big enough plant? Maybe I will understand better if I actually try it!

BrendaSharon

I think the aloe plant is pretty goooey and spreadable,,,, how big an area are you spreading it on?

You must have big boobs~~~~  Hee-Hee

and the body cast, what are you going to do with it?? I'm pretty sure they just chunk them out anyways.

micheleboots

You could keep the cast and fill it with dirt and some potted plants...perhaps Aloe.  Would make one great conversation starter...Melinda, good to hear you didn't suds up the sheets to much...Explain that to your frineds when they come to visit...

doronet

Suepen:  You can get pure Aloe Vera in a bottle from a company called "Fruit of the Earth."  Someone told me you can get it Wal-Mart. It is also sold at a grocery store around here called "Harris Teeter."  Not sure if they are a national chain, though.  This is the Aloe I used on my rad area.  Mine was healed enough to no longer be painful after 10 days.

Haven't heard of a cast for rad.  Weird. 

Sherri:  Was great to hear from you!  My insurance paid 100% of the rad, so I can't help you there.  My first visit was only a consult:  going over the paperwork with the secretary (I filled out the forms on-line), meeting with the rad. doc's assistant re: med. history, etc., then the rad dr. telling me what would happen, how many sessions, etc. That visit took about 2 hrs. in all.  Simulation (set-up) took 50 mins., then the first session took 45 mins because they checked the settings and then did the 3 "tattoos."  Every session after that took only 10 mins.not counting the wait in the waiting room.  I met with the rad. dr. once a week for her to check the area and to answer any questions I had.

Kayh:  I'm not sure I understand why they would order a brain scan for you with the neurapathy.  Why wouldn't it just be due to the Taxol?

In all my nights of sweating with the soap, I never had any lather or bubbles,  though it probably would have been fun!     Nette

suzieq60

Girls, I am using aloe gel all over the breast. It's just the raw bit I'm going to use the other stuff on as it's antispetic and only has pure products in it. I also use a VitE cream they recommended all over. The rest of the boob is fine. Well, it was until last night. I'd taped a panty liner in the crease underneath over the raw spot and when I took off the tape, I tore some skin off!!! What a bloody idiot!!!! It's only a small patch but it just shows you how sensitive the skin must be and it hurts like hell. Looks like I'll have to buy some pads and stick one under there and wear a bra to hold it in. I was avoiding buying any pads as I thought I'd seen the back of them years ago. They had told me to do that but I've been trying to go braless while I'm home and didn't bother.

I didn't have a cast for rads either - sounds really weird. I can see the point as they wouldn't have to go to any trouble lining you up each time. Only 6 of those nasty zaps to go - hurray!!!!

Hope you all have a great day.

Sue

Cafelovr

Lucky me found out that I get to have a brain MRI Friday to have on file. I know they don't think there's cancer, but I do have a tad bit of scanxiety. I swear I've had a dr. appt every day this week. Monday, I had a class at the cancer center. Yesterday I had my mapping (yes, they made a cast of me too). Today I had my Herceptin tx, and I have Thursday off. Ugh! No wonder we're so tired...we keep running around. I need a hamster wheel. I could power up NYC. Next Wednesday, I have a chest x-ray and start rads on Thursday.

I'm just tired of this $hit. I know...it's almost over! Peace to my sisters!

(((HUGS)))

doronet

Sue:  I put a band-aid on my rad area one time and the techs almost had a cow.  They said the adhesive is too sticky and can take that tender skin off when you pull it off.  I proceeded to rip the band-aid off, not paying any attention to what they were saying, and two of them shouted, "Be careful!!!  Do it gently!"   Actually, it would have been nice of them to mention the no-band-aid-thing a tad earlier in my TX.  :P

Cafelvr:  Look toward the light at that end!!! 

suzieq60

Nette: They never told me stuff like that either. I even mentioned I'd used tape to the rad onc yesterday and she didn't say anything. The cream I put on the 2 sore spots has helped and it didn't sting today. Now my back has gone out - I'm in the wars. Maybe I should go shopping that'll fix everything

Sue

doronet

Sue:  So sorry to hear about your back hurting now.  Yeah, just when you've got one dragon slayed, another pops up...seems it's never ending.  However, my devotional the other day reminded me that  I can still get out of bed in the morning, I can see things in my world, I can hear things in my world, I can taste things in my world.  Of course, I can add that I am getting hair to face my world. 

Hang in there, everyone.  Nette

Melinda41

Linda; I saw a t-shirt that said "One more MRI and I will stick to the fridge"

Hope everyone is having a great day.

GrandmaMickey

KAYH - I too have the bad neuropathy and gabapentin has been helping a lot with the pain but I still have the numbness and redness (generic for Neurontin)

Everyone else - Congrats on your finishing chemo - I thought I was done but the onc wants me to see a radiation onc for a consultation - since my cancer was totally zapped by the chemo I don't see the need but we'll see what he says -

Naked Herceptin for me until January 2011 - first one Thursday -

Hope the flooding is over and you are drying out Melinda - we were in Nashville in 2009 and saw on TV our hotel flooded - unbelievable - didn't even know there was a river that close!

You guys are the best - start work on Monday - Yippee!  (I think) I've been going out of the house with just a baseball cap - it feels wonderful - but I think I'll do the wig for work - at least for a while

Take Care Warriors!