August 2011 chemo, anyone w/ me?!

Taylor777

Vivie we all are here for you

I'm glad you have your nepew.

Sending you ((HUGS))

Madismommy719

Vivie...if your BF ran for the hills at the sign of trouble than good riddance, you don't need him!!!  And you WILL find someone that's not even going to see any of this stuff.... he'll only see you and love you for who you are!!!!  I have faith! 

And thanks ladies on the nice remarks regarding my haircut.  Honestly, if i can do it, anyone can.... i cried and cried for days regarding my hair loss, I was in a deep dark place there for a few days and I've emerged.... now if my wigs would cooperate with me.... so itchy.

Chrys23

Ellen -- I'm having some really weird s/e's and I'm at day 16. I don't even want to post anymore, because I know it sounds like I am whining and complaining and everyone else seems to be doing ok.  I probably won't come here anymore or will do it infrequently. I don't want to depress anyone.

While I don't have neuropathy -- my skin has started to itch and sometimes feels like it is burning and on fire in different spots (perhaps this is a form of neuropathy?). My fingertips were numb for just a few minutes yesterday and then it went away.  I also feel like my pelvis is going to drop out!! My internal organs feel "sore" when I walk.  I have gas pains and pressure when I use the restroom too. It's just too much. 

I just went to today work for the first time since August 31st. I'll be at work until next Wednesday, then I'm out a week again.

I don't know what is wrong and why I am having so many issues. I'm actually scared of tx #3 next week -- cause I don't know if I can take much more. While I can eat fine; I'm scared. Why can't I have it easier......... 

Oh and btw -- I LOVE my wigs! I've always worn them, so I'm used to it and love doing new styles and such.

Madismommy -- you and your daughter look beautiful!

Take Care and best wishes to everyone.

Madismommy719

UGH Chrys....have you shared all that with your onc?? I was told there is NO s/e that they (my docs) can't help me feel better with, and that no one going through chemo should suffer or be in pain....,and it sounds like you are at your breaking point!!! Hugs to you, gentle ones.....



Hopefully it all goes away very quickly and there is something your doctor can do.... Hang in there!!!

YaYa5

i agree with madismommy, chrys.  call your onc and get some relief.  i've read on here many times that you don't need to suffer like you are.  there is relief!  good luck to you.

summergirl1

Chrys23, Please do not feel like you are whining, we ALL have something we are whining about whether it our SE's our hair our emotional state etc, that is what this board is so good for us all as many of the people around us just don't understand what we are dealing with, it has got to be hard for you dealing with such SE's hopefully your Onc will change your meds a bit next time to make it easier for you.. stay strong and we are all here for you . (big HUGS to you)

Madismom, YOU DID IT, yeah and you look beautiful, its the hardest part for some of us so feel proud of yourself and keep smiling every morning I wake up I look at myself and say IT WILL GROW BACK!!!!! this helps me cope, and as i used a straighner on mine for so long it was in bad condition so I am hoping to have a  head of new shiny hair . WE CAN DO THIS. and it wont be too long before we are showing off pics of our new hairstyles. 

vtellen

Hey Chrys- I have had that heavy pelvis feeling before. Are you sure that it isn't from the uti? Also, I think the itchy, burny is neuropathy. That is what was happening w/ my hands last time and my lips this time. Please do tell your onco, because they may want to decrease your dose of Taxotere. That is what I believe is going to happen w/ me on mon (dose 3) They generally decrease the dose if you are having neuropathy, and it sounds as though you are, big time. I feel as though today is my first really good day, so I just think this stuff is strong. My onco made hand gestures to my fiance during my first chemo appt. Little waving motions, up and down, but going increasingly more down. He was trying to illustrate to Scott how my chemo trip would go, and how my energy level would be. Please, do keep posting- you always tell it like it is. And I think that you are a hoot!

Madismommy- good to read your posts again. Adorable pic of you and your extremely cutestuffs daughter!

Chrys23

All -- I *think* I may have figured out what may be causing my stomach/gas pain issues. I'm on Dexilant, which is a GERD (gastroesophageal reflux disease) medicine. I developed Laryngeal Reflux after my 2nd lumpectomy in July and had my throat close up, swelling, tongue swollen for a week -- the works. It was awful; I couldn't swallow or breathe. It was from acid creeping back up in to the laryngx/pharnynx during the surgery. So I went to an ENT specialist who put me on Dexilant and my ONC had given me a once-over after this and said the ENT guy was probably right.

Well, I just read that the Dexilant can cause Flatulence, diarhea, and severe stomach pain! I had stopped taking it for a while and started up right after my 2nd chemo, so that's the only thing new I've introduced. I am hoping that is it -- makes sense. I'll call the ENT person and see if they can switch me to something else. I notice if I don't use it, I get laryngeal spasms sometimes from the GERD.

I don't know if I'm being tested or what... How can one person have so many issues? I could write a book!

Ellen -- I'll call the ONC regarding the itchy/burning thing. It comes and goes and can seem to happen anywhere on my body. I want them to know before my next TX next Wed.. Maybe they can lower the dosage. Thanks!   You are SO SWEET!! I don't want to rain on anyone's parade. We ALL are going through so much between surgeries and chemo and radiation treatments. Who wants to hear someone complain?   I appreciate the kind words 

Grimbol

I bet the itchy burning feeling is the neuropathy.  I have it on my hands/fingers mostly and feet.  My onco said it shouldn't be this bad this quickly and they may have to reduce or change the dose/meds if it gets worse.  Don't stop posting, then we just have to worry about you without knowing how you are, besides you are on the same schedule as me, I don't think any one else is, I need to know someone else is doing this at the exact same time as me, it sort of helps!!

michelleo13

Vivie, I've had a lot more pleasure out of my iPad than the stupid wigs!  Go for the iPad. I read books on mine all the time and I LOVE it!

Madismommy - carpet football helmet!  LOL!!!! You look GREAT with your short do!

Chrys, hang in there! You WILL get through this and we're here to support you!

I'm finally feeling more energetic today on Day 9 post AC #3. Today, I went to the University of Waterloo where they offer a Well-Fit program for cancer patients. They did a fitness assessment and then will design a personal fitness program for me. I'll go to their gym twice a week for 12 weeks and they'll monitor my fitness levels throughout and at the end. I'm pretty excited about it. I really need to get exercising again. Other than walking and some light yoga I haven't done anything since my surgery.

koalakid39

Chrys, PLEASE call your oncologist. I called my nurse today because I was still feeling bad. I started cramping up over the weekend and started feeling like I was having a flare-up of diverticulitis. They agreed with me and put me on antibiotics. I haven't had a flare-up in over two years, but they said being on chemo it's no surprise. Please have it checked out, you should not be in pain like that! I hope you feel better!

It's also amazing how much a liter of fluid makes you feel better. I guess I was dehydrated!

Hugs to everyone! Kim

Taylor777

Chrys23 dont't you dare stop posting!!! Don't you ever feel like your whining and complaining that's what were here for!!! We all need to be here for each other

I'm been having some issues too..constipation, gas, stomach pains, headaces but I've been so depressed about the whole hair thing and I keep looking at my kids and I just want to cry. Last week was a bad week , kids went back to school and I was all by myself and all I did was think about my situation and cried and sometimes I think I'm just having a bad dream and that I'm going to wake up from this!! I went from being really busy to this... 

None of us should be on here we don't deserve this but I'm thankful I found this site and finding all you guys!!! So dont even think about leaving us Chrys23!!

Sending you ((hugs))

Tanya

DebinUtah

I love your buzz cut, Madismommy!  You've got a great shaped head! 

Okay, gals who have been bald for awhile give me some advice: I had a stylist shave my head over three weeks ago.  I had already lost about two-thirds of my hair, and the Apollo "hair system" I bought needs to be fitted to a bald head.  The problem is that I haven't lost that last one-third of my hair yet and it's pretty itchy and getting longer every day.  I think my wig would be pretty comfortable (the cap is very thin, breathable rubberish material) and my head would look better bald if it weren't for the stubble!  Will the rest of my hair fall out in subsequent chemo treatments? (I've had two so far.)  Like Summergirl, I'm not a hat or scarf person (except at home); I teach at university and I just can't stand up in front of my students without hair (even if it's not MY hair).  But I still cringe every time I see myself in a mirror--it's not me.  This whole thing is so surreal. 

Chrys, here's wishing you a peaceful night and a better day tomorrow 

 

jbagley

Chrys, dexilant can definitely cause more gas, bloating, and stomach issues, talk to your onc about it.



I finally had a pretty good day today, though still tired. I got to go to girl scouts, I am the troop leader for my daughters troop. Thankfully, I had 5my moms there to help me, I didn't do too much, then had a leaders mtg after. My husband thought it might have been too much. I am glad I went to both meetings. I had to get out with the girls. 13 troop leaders and we were all laughing. Duriing introductions, the unit leader asked me if I wanted to share what I had been through this summer. I started crying when I said I was diagnosed with breast cancer. That was hard for me. I still was glad I went.



I go for a wig fitting tomorrow in bangor. Eastern maine medical center has a program where you get fitted with a free wig. So I am gonna go. They also do some makeup, to help you feel beautiful, its one of the programs they have for breast cancer survivors in treatment



To all getting tx this week, hope for min se.

hugs and love.

jenn

jbagley

Debinutah, the few sprigs of hair on my head never fell out. Even after 3 treatments. I took a razor and my husbands shaving cream and shaved it off. Believe it or not those same hairs are growing back. They must have been the 'newest' hairs growing beforer our tx started. Our hair has like 2 stages, resting and growing and the alternate throughout the year. We all have millions of hairs growing at different lengths. Lose some then new ones grow back.



Just shave it, after I did it, my head felt better!



Jenn

Grimbol

Chrys, I hope you are still reading the posts.  Look back at the August 2010, everyone there has hard times after the first couple of tx, lots of whining and complaining, but thats the point.  Hang in here with so.

missey29

One complaint my wig makes me feel like a clown sometimes. But glad to have something.

Taylor777

robo47-Its 2 days after2nd tx and my hair is starting to slowly come out ughhh!! This is the damn worst out of all this!! When your bald you look sicker than you actually feel and people staring at you! I dont want to be stared at and I dont want anyone's pity!! I have alot of support around me but no one knows what I'm going through..there is no one around my age who is going through this. I'm 41..

I'm so thankful that I found this site!! I've been going to see a social worker and it hasnt been working ..she keeps telling me to think positive about 20 times throughout our session..Where is the positivity in all this??!! Where are you all getting your strength from?? I have 2 kids and everytime I think of them I start to cry ..I want to see them get older.. It doesnt help that I took a  leave from work, I put my gym membership on hold and I put my schooling on hold too..I went from busy to this..thinking too much about my situation!!

This weekend will be the weekend that I chop off the hair  I do have a nice wig but I know I'll feel very self-conscouis when I leave the house so I bought some really nice hats to wear ..Thank god it's the fall!! Summergirl and madismommy you had a hard time with your hair and you did it!! I hope I can too!!

Chrys23-hope your feeling better today! Jbagley I'm glad your feeling better!!

Michelleo-Thats great your full of energy!!

Hope everyone has a S/E free day!!! Anyone have tx today best wishes to you all  

Robyn6463

I'm at Day 13 after T/C #2, and I've been feeling okay for the past couple of days, but the lack of energy is starting to hit me. I've had a day or 2 after each treatment when I think I can't do any more, but then I get better. Of course, last time we messed up that whole 3rd week that I was supposed to feel well with this stupid port! It's still giving me trouble, but not as much. Hang in there Chrys! It's okay to whine to us! We all understand completely! I'm sorry you're having such a hard time!

Both my daughter and husband are working a great deal of extra hours, and my son has gone back to school, so I'm feeling kind of lost and lonely. Haven't posted much lately, but I want you guys to know you're filling that void! I'm working at home, so even when I muster up the strength to work, I'm still alone. But lunch w/ my boss tomorrow, dinner for my husband's b'day tomorrow night, and dinner with "the girls" on Tuesday. Something to look forward to! Hope I've got the energy!

Madismommy - You are beautiful, and even bald, you'll still be beautiful. Unfortunately, I'm a little overweight, and w/out my wig/hat, I look a lot like Uncle Fester. No pix from me! Sorry! 

Does anyone know how long it takes for our hair to start to grow back? I've still got some, maybe 15-20% of it, and I still shave my legs about once a week, 'cause they do get stubbly. Last treatment is October 14. 

Madismommy719

Taylor....I wish we lived close because I would come and hold your hand this weekend....you're going to get through this, I promise. But it sucks....and it sucks bad!!!



Robo...if you need anyone to come and hold your hand you're a car ride away and I WILL hop in my car to help!!!! And ladies, if I made it through that initial buzz cut I know you both will.... I was so down and terrified with it I couldn't even voice my pain regarding it. If either of you need anything let me know....



Chrys....I hope you're still reading and feeling better.....



Yay Michelle and Jenn....it sounds like you both are feeling better!!!!



Thanks again everyone for the encouragement on my GI Jenn cut....it's still hanging on to my head but I'm wearing my football helmet wig to work just to try to get used to it... All I know is I better not be in that very rare group that hair never grows back....oh my!!!



I hope everyone has a good day and a s/e free day!!!! Hugs to all of you!

Madismommy719

Hi Robyn.... I was typing while you were posting. I'm positive you are beautiful too!!!! Someone told me the stubble will start about 3-4 weeks after the last treatment and grow approx. 1/4" a month for most....some people faster/slower. And oct. 14th will be here before you know it, YAY!!!!!!

Grimbol

What group where it never grows back???????  I'd not heard of that.  My hair better grow back, I hate this!!!!!  I shaved mine when it started falling out badly, and it is no fun, as you all know.  I am just about ok with being bald at home, my kids say they are quite used to it now, but I can't stay like this for ever, please!!!!

michelleo13

Taylor, I know what you mean about that empty feeling when the kids went back to school last week. It gives me way TOO much time on my hands to think about what's happening with me. When they were home, they kept me busy. Now I'm looking for things to fill the days. I'd love to be working at least some of the time but that isn't an option with my job. I LOVE it when people at work send me emails to ask me questions. Gives me something to think about and makes me feel useful. They always tell me they feel bad about bugging me! Oh my gosh, they could bug me every day if they wanted.

DebinUtah, I didn't shave my head and just had it cut very short. I'm going for AC # 4 next week and I'd say about 90% of my hair has fallen out. I still have hair in the back, and a bit on top. It looks a bit ridiculous. I think it was Ellen that said she looked like a Wonka. I feel about the same! I think I'll have to shave at least the long strands on top before it starts growing back or it'll be a real mess!

Robyn, I've head all kinds of different things about when hair starts to grow back. I have 4 Taxol after my 4 AC and I've heard from some people that the hair on your head starts to grow back on Taxol but you lose your eyebrows! Yikes!

Madismommy, I worry too when I hear about people whose hair doesn't grow back. I understand it's very rare but with my luck... Even the info they gave me at the hospital before I started chemo says "Your hair will usually grow back when you are finished treatments". I guess they have to cover themselves for the rare situation when it doesn't.

vtellen

Let's NOT go there! Everyone's hair will grow back! Mine is sooo thin, but it feels "normal" to at least have some curls shooting around up there. Still have eyebrows and lashes and nose hairs(!). And, shave my legs every so often, just to keep the super smooth going! If anyone else knits, I am tackling the baldness issue by making myself a chenille maximum softness little cap. It is a fast and very easy pattern!

Madismommy719

I agree vtEllen....all of ours WILL be growing back!!!!! I have faith! And Grimbol, it's a very small percentage and rare that it won't.....very rare!!! . I just always seem to be falling into that small percentage category with BC every time my doctor brings one up....but I think this is a very rare thing....the doctors probably just have to cover their butts by scaring us with it!!!



I just walked an hour in the Chicago fall wind and my hair is still on my head..... I have to don my carpet head for work now!!! BOO!!!



Everyone have a great day!

MaryjRN

Hi ladies,

Chrys...I hope you are feeling better soon.  Did you call the onc yet?

As far as the hair issues...The period of waiting for it to fall out was producing huge amounts of anxiety.  I felt so much better when I took control and just started cutting it on day 19.  There was a total change in my anxiety levels.

I'm not sayin' I like the look, but the shedding/clumps, and the what ifs were much worse to deal with.  

And, if anyone is keeping tabs anywhere, put me down for hating my wig, too.  I prefer a headcover, but will need the wig for DD's October wedding.

I'm day 4 out from #4AC.  Feeling the effects of Neulasta more with this treatment.  

Hope everyone has good days with the least s/e possible.  Love you all!...

Grimbol

Ok, I'll calm down and believe with all of you that our hair WILL grow back. phew!

ukgirl

Hi everyone, am starting taxol on my next round of chemo, am wondering if anyone has had it yet and if the side effects are much different than for A/C. The oncologist told me that it has a higher risk of a bad allergic reaction up there with anaphylaxis so i have to take benedryl, high dose dexamethasone  and acid blocker. He also recommended clarityn as well. sounds like fun!!! but at least i'm at the half way mark  and still here.

Am trying to get back to work part time. I work on an icu so I cam't do that so my boss is trying to get me to do chart reviews and paper work but it's been a long progress. I too feel like I wallow on my good days and feel sorry for myself so both the surgeon and oncologist agree this would be good for me. The other factor is come Oct I have to pay cobra for my insurance which is a an awfully huge amount so hopefully things can get resolved.

I tto hate my wigs. Too hot, too itchy and they sit around my face which I hate.

Good luck to everyone having treatement this week. Stay strong

Hugs and kisses

MaryjRN

UKgirl...I will start Taxol on 9/26 and I will report here with my experience.  I have to premedicate with Decadron the night before, morning of, and then they drip it in while the Taxol drips.  My onc said that it's a very real concern, but, the incidence is rare.  Hopefully it will be non existent  for all of us.

vtellen

Well, what is the difference, really, between Taxotere and Taxol? The steroid schedule seems to vary w/ each onc. Mine has me take 4mg of dex. 2x a day, starting the day AFTER treatment and continuing for 4 days. And at chemo, I get first saline drip, then steroids, then prilosec(?), then another stomach thing(?) then benedryl, then cytaxon then grande finale - Taxotere! Then I get out of there as fast as I can !