Chemo May 2011

Anonymous

Ok, I had my lst Halaven treatment today and of course I know it is too soon to tell if it is going to make me feel like crap, but I am just sooooo happy I have gotten started since even though I have done many chemos, I was not looking forward to today at all.....kept thinking of myself as a sacrificial lamb....mainly because I have been feeling so good these weeks off treatment and just hated the thought of starting a new one.  Especially after my onco tells me that we are playing a different ball game now. But I met a woman in the treatment room who has been on it since Jan. and she is doing well except for the neuropathy and her hair is even starting to come back while she is on it and she said she really has not suffered from fatigue so I found that to be really encouraging.  It took forever as usual since you have to go through that crap with the business office first and then you see the dr or the PA and then they send you to the treatment room and they have to await approval from up front before they can even mix your meds and then there is another wait before they hang them.  Deciding not to work this afternoon was a very smart move since I would have been very late getting there.  I hope I am not up all night because of the steriods....I asked How much am I getting and the nurse said the full dose.  I feel like I have a sore throat, but this is not a listed common or uncommon SE so think I may just be dry.  Oh and I guess the reason my onco was really pushing this one is because he's had good results with every patient so far and he told me to keep it going....Like I have any say in that....but I sure am hoping. 

I like your haircut Cyborg.  Almond milk is yummy, Laureen  Robyn, I know it sounds awful, but I think I would be happy if I ever had a treatment where I lost my appetite.  I eat even when I am unable to taste.   I really like your advice about just getting through TODAY, V.   

Cyborg

Hey! I am not really tired. I feel weird. It will be ok. Keeping the demands low on myself until I know what kind of SE s are going to appear. Would I be feeling them yet? Hair is going to prob be gone by the 20. A little stiffness from the Neulesta shot. Not hungry at all. Tine to dice feed myself. Met my radiologist today for a consult. I feel comfortable with him. Nice new cancer center with some holistic attributes. Right now-- almost happy. Ready to cuddle myself if I don't stay this way though.



Ma

Cyborg

Marybe-

Glad u met someone in the lounge. I hope u have a good day and/or evening. It's sunny here. Hugs to u.



Hugs to everyone.!

Anonymous

Oddly enough it is somehow comforting to get started, even if it is not something you want to do.  No, it's not to early to feel SEs....lst day I think is, but I know when I was doing Abraxane, which my onco says is the same at taxol, I felt it two, two and 1/2 days later.....would get it on Wed. and be raring to go on Wed afternoon and did not sleep much at all that night, on Thurs would still have lots of energy, then on Friday afternoon I wear just totally give out....would sit down in a chair and my head would just drop off and I would wake up with drool on my shirt....then it got to the point where I would just about crawl in the door on Friday afternoon and go right to bed.  I think just about all chemo is cumulative and you have to be on it for awhile for the SEs to show up, except for nausea and fatigue and those can happen early on..  The fact that with most ACT treatments , it's over in about 6 months and even though you don't think it now, the time will go pretty fast.  How do you feel weird?   I cannot say I am really hungry, but for sure I am having pizza tonight....another one of those little food rewards I am so fond of. 

mccrimmon324

Hello Everyone,

It looks like I'm going to start Chemo sometime in May, exactly one month ago everything was normal, then I had my very first mammogram, biopsy, lumpectomy and now it looks chemo is going to be next.  All I can really say is I'm scared sh*tless and I'm sorry that every one on here has to go thru or has gone thru this but just reading what everyone is saying to each other helps me to see that there is support out there and at this point I'm so scared I don't know where to go first.

Thanks for listening

Robyn_S

Welcome Mccrimmon324! As has been said before we are sorry that you have to join our group, but I am sure that the support and camaraderie that comes with knowing that everyone here knows exactly how you feel will help you on you own journey!

It is a whirlwind in the first month but reading what has been experienced by others for each step of your treatment is helpful and purposely taking one day at a time is great advice that I was given by others here!

(((((HUGS))))) take care!

Robyn

mccrimmon324

Thank you, I still don't have all the details, I'm having my port installed on Friday but then my next oncologist appt is next friday, thats when he's going to go over the treatments and everything like that.  Just found out this morning that I will need chemo, spent the day trying to process, I'm trying to think positively, I know the dr said he got it all and my markers were good.  The nurse in the surgeons office said that it mostly precautionary due to my age, my lymph nodes were negative.  Sorry for the rambling.  I've read on here the wait is the worse part.  Is that true?

carabear

Cyborg~ Glad you are feeling ok after the first treatment. I started the steriods today and am feeling preetty weird. Have my first visit to the chair tomo for TCH #1. Hang in there!

Mccrimmon324~ Welcome to the site it has been a lifesaver for me. So much good information. The wait and not knowing what to expect was the worst for me. I have had a mastecomy, drains, a port and my first fill. All went well with manageable to no pain.  I am also young (32) and my path report was pretty clean. Sucks doing chemo but I am so THANKFUL that I was lucky to have caught it early. If you have any questions, just post on the board.

To all the other fabulous May ladies I hope you are doing well. You are all in my thoughts and prayers daily! 

Hugs, Cara

jackifp

Rsummerr: I know what you mean about the overprotective DH. I've teased mine that he's become like a tick...but considering some of the terribles some women go thru with unsupportive and even abusive spouses during all this other stuff we're going thru, I'll take my tick...besides, we've put up with each other for 35 yrs at this point, and he's a better cook.

jackifp

Rsummerr: I know what you mean about the overprotective DH. I've teased mine that he's become like a tick...but considering some of the terribles some women go thru with unsupportive and even abusive spouses during all this other stuff we're going thru, I'll take my tick...besides, we've put up with each other for 35 yrs at this point, and he's a better cook.

Beaglesgirl

Ok, it's been 10 days since my first honest-that-day brave sounding post. My surgery was difficult and it had complications --transfusion, hematoma, PS had to go in and fix it the day after my 7 hour surgery... I guess it took a few days for it all to catch up with me (including) the pain....



So now I am really freaking out, I don't want to be a zombie on drugs to feel better I want to enjoy life as best as I can but I can't do that either if I'm to I'll to get out of bed.



I had my abdominal, lungs and pelvis scan yesterday and my MUGA tomorrow. Doc appt. on Fri. Wish me luck since I get the biggest whiner award for the day



Thinking of all of you.

Patriotic

I am starting chemo tomorrow. T+ H x12 weeks, then ACx4. Anxious to get going but pretty scared of the possible long-term effects of the H and especially, AC. I guess I need to worry only about one thing at a time.



Cancer sucks.

Cyborg

I think I am begenning to feel the steroid crash.... Some body ache from the neulesta shot but so far it's mild. The emotionality connected to coming off the steroids is weird. Being suddenly "moved" is funny at times!

Cyborg

Are we going to keep track if hair falling out? I don't want to be alone. I am absolutely grateful for treatment. I just need sone support for going through the bald part. Anybody in? Scalp felt tender tonight .

KiwiMum

Hi ladies. I'm from the April chemo group and noticed your comment Cyborg about hair loss.



My first AC was 4/19. I am now on day 17. Yesterday I noticed lots of hair coming out after my shower and when running my hands through my hair I pulled out lots of strands. Today it has increased to a good handul when I pull. Apart from that I've not noticed itchiness or tenderness that others have.



I'm planning on shaving it off on Saturday. I can't face the thought of it falling out more and more each day.



Good luck!

Anonymous

  I actually fell asleep tonight reading in bed about 11:30....I was worried since I got the steroid pre-meds today.  Then this little tingling sharp jolt went up my leg from my foot and woke me up so I just finished taking the dog out and am going back to bed.

I have no idea what to expect with hair this time...have heard of one who lost hers in as little as eight days and another did not lose hers at all, many just get really thin.  When I did Abraxane (taxol), I recall I passed the 21 day mark and thought ah,ha maybe I won't lose it.  Then I remember my scalp would sort of ache if wind blew on it and it slowly started coming out....for awhile I felt like I lived in the house of hair....me, the cat and three dogs all shedding.  I did not shave it, just had it cut very short.  

Patriotic, you are doing the adriamycin last?

Beaglesgirl....where is Parkville?   My cousins are in Jeff City, Springfield, St. Louis and Shell Knob.  I love the Show Me State. 

mccrimmon324

Carabear, Thanks for the welcome, I think you and everyone else are right with the waiting is the worse part.  I think I'll just feel better when this gets going. 

My poor hubby had it in his head that chemo was not going to happen and now he is trying to process, any advice for hubbies having to go thru this with us.  I have no idea why but I feel like I should apologize to him for making him upset but we know that's ridiculous but we just worry about each other.  Someone mentioned something about tracking hair loss, I think I'm not so afraid of it happening just of how I'm going to react when it does.  Can anyone give advice on places to look for wigs, etc... anything that would be needed.  I'm also interested in skin care and makeup, do we need to change our products, what about taking vitamins?  Again, I do tend to ramble so my apologies and good luck everyone with your treatments and take care.

Anonymous

Re wigs,,,,Do NOT go to places that say they cater to cancer patients....they will just rip you off and you can get a nice wig for a reasonable price elsewhere. I just looked up wigs in the phone book and the one I got that I liked the best was only around $139.00.  The American Cancer Society should pay for one wig, but sometimes it takes time to get one through them.  Also check on your ins....mine would reimburse up to $150 I think....you need to get a prescripiton from you onco and then they will remimburse you...it has to say Cranial Prosthesis....calling it that made me laugh.  There are several places you can order wigs that are nice....Paul Young (or maybe it is Paula) ...look on line and they will send you a catalog.  There was an organization here in Cincinnat called Cancer Family Care and they gave me a free wig and a lot of other supplies....I do not know if they are national or not, but even if they aren't there may be a similar organization in your area.  People donate wigs to them after they are done with them and they clean them up and they are good as new.  I passed my wigs on to friends going through and frankly I do not know what I am going to do....I swore I would never wear a wig again because I found them to be hot at itchy and just uncomfortable, but I did get a lot of compliments on my "hair" from people who didn't even know it was a wig.  I am thinking I just want to wear scarves and bandannas but time will tell.  It did not bother me as much as I thought it would....just remember, it will grow back. 

Re makeup....chemo is going to cuase you to get dry skin so be sure to moisturize, mositurize. 

Anonymous

Mccrimmon,  I forgot in my above post  and this is something all of you should check out, there is a group called Look Good Feel Good and they have a program where they show you how to apply makeup and how to style wigs and ways to wear scarves and headgear.  The best part is they give you a ton of free makeup...some of it expensive brands, Channel, Lancome, Este.....I have not actually done it myself, but two of my friends did and she was just so impressed with all the freebies and gave things she did not want or use to friends.  I am going to do it this time, just have to write myself a big fat note so I will remember. 

40-years-old-now

I am signed up for the Feel good Look good. I signed up because I wanted a semi support system and wanted to know how to tie scarfs.

Oh you all may find this interesting. When I had my blood work done for surgery, the lady that took my blood is a BC survivor. She told me to come in anytime to talk.

Marybe, you need to contact them ACS so you can sign up.

Candice

mccrimmon324

Marybe, Thank you for the advice.  I just called my oncologists office to ask the girl there for any infomation she can get me, we went to the mall yesterday where there has been a wig store forever and of course it's no where to be found now.  This whole situation is just terrifying to me as I'm sure it is to all of us on here and I just want to try as hard as I can to keep everything as normal as I can. 

Take care.

40-years-old-now

mccrimmon324,

You should call the ACS (American Cancer Socity) and ask about wig banks in your area. I am having a consulation on Friday (tomorrow) so that I can look at wigs. Looking at your pic your hair is about 6" shorter than mine right now. I see the oncologist Monday.

The ACS number is

1-877-499-4673

You can call them for several things, Feel good look good, wig banks, other information too.

Candice

bak94

Hi everyone, hope you all are doing well. I start AC tomorrow. I am doing chemo before surgery, so I hope it works! I am a bit nervous, they are also doing the port on the same day. My doc wants to do a slow drip of AC, taking 24 hours, so I have to stay in the hospital overnight. I have never heard of this before, but he said it is less toxic to the heart this way and since I had AC once before he wanted to do it this way. I think I am more nervous about the port than the chemo!

BioAdoptMom3

Welcome to all our newcomers since I was last here a few days ago.  It does help a lot to read about what others are experiencing and it sure helps me to not feel so alone! 

I hadn't noticed anyone mentioning restless legs as part of your side effects.  I have never had it until the other night so I am pretty sure its either chemo or Neulasta related.  It kept me awake from like 1 AM till 4:30 AM so I called the onco who prescribed something called Klonopin, which is an anti-seizure med.  Has anyone been on that before?  I am only to take it as needed and its only 1 mg., but the side effects, most psychiatric, sound so scary.  As miserable as I was the other night I'm not so sure if I have the problem again I'll even take the medicine.  Maybe its such a low dose I won't have to worry about it.

My bone aches from Neulasta started today but thankfully nothing that Tylenol can't control.  Its mostly affecting my lower back and legs.

What tastes good to you guys?  I have having a hard time finding anything other than fruit smoothies and ice-cream, that tastes good to me. 

(((((HUGS))))) to all!

Nancy

Cyborg

Wow. I started writing and then I lost my post! Maybe ots sone whereon here.

Hey everyone. Feeling more sore and strange in the head zone. I feel not really with it. Tylenol helps a lot. No appetite. Fruit smoothy from Jamba Juice was ok but not tasty. What are we supposed to take if our mouth feels tingly and thrush like? Can someone private message me and tell me?

linda614

I'm glad someone started this because all the previous ones seemed to be way ahead of me.  I had surgery March 31 and started Chemo this past tuesday, May 3.  Neulasta shot today.  Not feeling too weird yet.  Gooood drugs for nausea.  I was reading about the wigs, and I was told today that the Resource center at Roswell Park (anyone else going here in Buffalo?) will give you one free wig.  How cool.  Still weirded out about the hair loss, but maybe I'll become a diva.

carabear

Just got home form TCH #1. Feeling ok, little tired as I got little sleep last night from the steriods. And I feel a little like I have heartburn, but otherwise doing well. Loved the place I am getting chemo. EVERYONE is super nice. That makes it easier. Hang in there ladies-we will make it through!!

Cyborg

Linda614

U and I are kind of on a similar shedule--- had the surgery 3/17 and just had chemo on Monday. The April chemo 2011 is good too for me cause I like to look ahead. Had two baked potatoes. Had a little olive oil and sea salt as well as some pepper. Good stuff. My dog helped me some.

linda614

Yes, I did read through quite a bit of April 11 also.  You are right, it was helpful.  I havn't had too much trouble eating yet.  The only tast oddity is things taste way too salty. 

justagirl

Cyborg,

I had my chemo followed by radiation last year, starting in April.  Like you, I never ate much meat but craved it during chemo.  I usually eat fruit, veg, pasta, rice, beans but chemo screwed with me.  I lost 20 pounds right away and had to give in to my cravings, so ate well prepared lean meat, especially beef and lamb and fell in love with potato chips!

My hair was very long.  I had it cut short just before I started chemo.  The chemo nurse said my hair would start to fall off on the 10th day after the first IV of one of my two chemo's.  Every morning I got up, looked in the mirror and grabbed a clump of short hair on top of my head and pulled.  It stayed in....until the 10th day and the CLUMP CAME OUT IN MY HAND!   I then proceeded to cut the rest of my hair off, then shaved what I could and had my DH shave the rest off when he came home.  Didn't want to shed like a dog and it in some way empowered me.  I did wear head coverings at home around my 17 yo son as he couldn't look at me bald and covered up with a scarf with a cotton cap underneath which gave my head some shape.  I must of not look too bad because my son would go out with me.  I lost my eyebrows and eyelashes completely and look more like an alien.  A lovely lady at the cosmetics counter picked out a paler eyeliner than I would of and showed my how to draw eyelashes on.  She was great.

Remember, if you need help, ask for it.  There are a lot of nice people in this world.

To get all your water down, maybe add a bit of lemon juice and sugar to it - weak lemonade.  Or add a bit of apple juice?  Drink by the bottle to keep track of how much you are drinking.

For  your tongue, it sounds like thrush and your oncologist can call a script into the chemist for you of drops to put on your tongue.  Keeping hydrated is the key.

I'll be thinking of you because you had your surgery about when I had my first one last year.

Be kind to yourself!