August 2011 chemo, anyone w/ me?!

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  • Chrys23
    Chrys23 Member Posts: 291
    edited September 2011

    Ellen - I can hardly swallow - I'm broken out in welts and I itch and burn all over my body. I don't care if it's "one more". You are not having severe reactions like me. If I can't breathe nor swallow and steroids aren't helping nor Benedryl and even the Drs don't know how to help why would I put my life in danger for "one more". I dont mean to sound terse but this is serious. I thought I would be admitted yesterday.

  • marthah
    marthah Member Posts: 322
    edited September 2011

    Hey ladies, I'm just popping in as one who is 3 weeks PFC to let you know you CAN get through this! You are a strong bunch...hang in there...it does come to an end and you WILL feel better. I feel a tiny bit better each day. (TC x6 every 3 wks, finished 9/9/11.) Cool

    Chrys, I'm sorry you have having such a horrible time! I don't know about your other reactions/SE's, but I can say that the burning/tingling/numbness in your hands and feet is typical of TC -- peripheral neuropathy is what they call it. Chemo absolutely trashed my fingernails, but they'll come back, and there were days I couldn't go to work because both of my feet were numb up to my ankles, so I wasn't comfortable walking. I can confirm that this will get better when you finish the treatments. Has your MO prescribed any pain meds? This can lessen the perpherial neuropathy...it did for me, anyway. 

    Hugs to all of you!

  • vtellen
    vtellen Member Posts: 345
    edited September 2011

    Oh sorry Chrys- I totally get it now. I was just trying to cheer you on.

  • michelleo13
    michelleo13 Member Posts: 342
    edited September 2011

    Ellen, so glad your US was normal. That's such a relief.



    MisMarie, welcome to our group!



    Okay, so I've been reading the Anticancer book and it's a fascinating read. Trying to figure out how much of this I can adopt in my life. My husband is a meat and potatoes man (raised on a beef farm) and has no intention of changing. I'd love to cook dishes with less or no meat but my family would rebel! I definitely need to cut down on sugar...candy and chocolate are big weaknesses for me!

  • Vivie
    Vivie Member Posts: 52
    edited September 2011

    Ellen : Glad your ultrasound is clear! Woot!

    Grimbol : Woo! Clean MRI!! GOOD.I can't get a MRI b/c of my CI , so I have to get a CAT scan every three months.Last one was clear, so I'm hopeful for the next one.

     Chrys : I feel for you.If you can't do it , just stop.It's not easy.I'm not having as hard S/E as you and I'm at the point of stopping too.. You'll get back to normal..7 tx's are better than nothing at all! You've done everything possible to kick its butt , now it's time to try and live life again.Just don't be a stranger , OK ? BIG BIG warm Greek hug out to you.

     Michelle : I've downloaded the sample of that book on my Kindle , but I don't know how I can adopt that lifestyle as I'm a picky eater , been all my life...I'll try to adopt what I can after I've finished chemo , right now I can't afford the stress of more changes.I'm stressed out enough from the whole BC shit , plus the situation in Greece.I have to pay a tax property that I don't have money for , and I'm unemployed to boot! aargh.Been researching it all day..( on the up side , I didn't research anything abt chemo or BC , so that's a bonus , maybe ) 

     a laugh for all of you..Half an hour ago , I decided I should take my evening meds ( I take an antihistamine every evening when the weather turns , for my allergies ) and I added a painkiller due to bone pain..anyway , I walked in my room to grab them from my bedside table...but I didn't manage to get very far..a head was moving from somewhere.I very nearly screamed then and THERE.Almost peed my pants and was ready to faint! Common sense prevailed , and I switched on the light..

     What had scared me so much? the goddamn WIG!! The stand probably got unfolded and was wiggling when someone was coming into the room...and in the dark , and an active imagination....

     I'm moving that thing to my brother's room tomorrow , stat! ( He's not living with my family anymore except on holidays ) but almost everyone nearly peed their pants from laughing so much , and I figured...you might need something to laugh about :)

     Off to read some and then bed , it's nearly 3 AM here.I was so scared that I left immediately without the meds , then had a D'oh! moment and went back to retrieve them :) 

    goodnight ladies.Hope you enjoy the laugh.

  • Grimbol
    Grimbol Member Posts: 326
    edited September 2011

    Certainly did Vivie, thanks for telling us.

  • Taylor777
    Taylor777 Member Posts: 141
    edited September 2011

    Thats's great Ellen!!! What a releif!! Smile

    Thanks Vivie that did make me laugh Laughing

    Marthah- Congrats on being done!!!! Yay!!!!

    Sorry that your going thru so much Chrys!!!

    Grimbol your going through hell and you got rude comments from your family!!!

    Good night everyone!!!

    Good night everyone!!!

  • JMULL
    JMULL Member Posts: 46
    edited September 2011

    Grimbol & Ellen - Yay on clear test results!  What a relief that must be for you both.

    Vivie - great story.  Thanks for the laugh.  I shared with my husband as well.

    Chrys - sorry you are having an awful time.  My heart goes out to you.

    TX 3 kicked my butt and it is now day 8 and I am just barely feeling like myself again.  Very teary eyed this week as well.  But, we are celebrating 2 of my daughters birthdays this weekend so I have to kick it in gear tomorrow baking brownies and a Winnie the Pooh birthday cake and cleaning the house.

    Hugs to all.  We'll get through this.  We have to.  We fight like girls!

  • dianamaps
    dianamaps Member Posts: 50
    edited September 2011

    Chrys -  I'm so sorry you're suffering.  I completely understand your needing to stop.  I've felt that way all week and talked to the PA about it during my appt today. If I had more A/C to go, I'd stop now.  This week has been hell. The worst of the four rounds, both physically and emotionally/mentally.  Though not the same kind of acute physical reactions that you're having.  

    I won't stop chemo altogether at this point, in part because I believe everyone when they say the Taxotere/Herceptin will have milder side effects.  And Taxotere has such a completely different way of killing cancer (versus both A and C) that I want to at least try it. But we are probably going to postpone starting it by a week, so I can have a longer respite between these.  

  • jbagley
    jbagley Member Posts: 102
    edited September 2011

    Grrimbol, same here, my brother has verbally abused me. I was not feeling well on friday, day 6 of taxol. I could not find a babysitter for my 3 yr old. I was really achey and weak, hemoglobin is down to 8.3! So my mom lives 2 hrs away. My husband on friday night took me and my 2 kids at 09pm to my moms house for the weekend to help me with the kids. Well saturday night my brother comes over, he has the gall to send me a facebook message, you seemed uninterested in zach (3 yr), what the f........, he doesn't get that the side effects of chemo are so bad, and it was #5, cummulative. He thinks chemo is a piece of cake, he has not once called me since my mastectomy. This was the first time I had seen him since my surgery.



    I am still feeling really weak. Had my radiation oncology appt for consultation today. It went really well. Dr. Szal is really nice and explained everything to me.



    I have #6 taxol Monday. Hoping no reactions.

    hugs to all, wishing no side effects.

    Jennifer

  • jbagley
    jbagley Member Posts: 102
    edited September 2011

    Vivie, I too just read your post about the wig, laughed and had to read to my husband. He thought that was funny too. Thank you. I have had a really bad week. My brother and I are not speaking.



    He has said some really nasty things to me.



    Jennifer

  • jbagley
    jbagley Member Posts: 102
    edited September 2011

    Chrys, what kind of oral meds are you taking after the chemo, you could be allergic to one of them or even the filler in the pill. What exactly did you take from the time you had chemo until the neulasta shot?



    Just trying to figure out why you are having such a bad reaction! You could add high dose zantac or tagamet to help with histamine response (hives and swelling tongue) this isn't something the doctors should be brushing under the "carpet"! This is really serious!



    Jennifer,

    hugs

  • DebinUtah
    DebinUtah Member Posts: 75
    edited September 2011

    Dear Chyrs--now we know how our "co-survivors" feel when they see us in pain: helpless!  I wish there was something I could say or do to help.  All I can say is trust yourself--you know your limits and your body better than anyone else. According to the author of that "Anti-Cancer" book, "feelings of helplessness feed cancer." Who knows, maybe by taking control of your own treatment you're doing yourself more good than the chemo would anyway.  I don't know. But I wish you peace and strength. I wish us all peace and strength.

    Thanks, all, for the advice about the radiation and the Systane (bought it, used it, feel better). 

  • MizMarie
    MizMarie Member Posts: 332
    edited September 2011

    Thanks for the warm welcome, everyone....  Wow - so many ups and downs among us...  Chrys, my heart breaks at what you are going through....  While it's always wonderful to report how well things are going, breezing through chemo, good scan results, etc, your situation is a good reminder that cancer is very discriminatory, and even among those who have very similar treatments and diagnosis stats, not everyone has good news to share.  I pray that things will turn around for you....

  • Robyn6463
    Robyn6463 Member Posts: 167
    edited September 2011

    Chrys, I wish they could give you a definitive answer to what's causing your S/E's. I definitely understand giving up the treatments at this point, but I would feel better if you knew what was causing your reactions! Feel better soon!

    Vivie - I loved your wig story! Very funny! I've been really jumpy since this all began. Easily surprised by people appearing in doorways...I jump out of my skin! I can't imagine what I would have done! 

    JBagley - I'm sorry about your brother. Many members of my family have disappointed me since this all began. I really need somebody nurturing around, but I guess I'm the only nurturer in my family. There aren't any others! Hubbie is working really hard, and cooking, but is otherwise uninvolved. He forgets I have appointments, wonders why I'm tired the night after treatments...He isn't at all sympathetic, and he's getting worse. I think he's getting tired of it! (And I'm not)???? Funny, oldest daughter seems to be the most supportive. The last one I would have expected. And my best friend, who's been awesome. But had her second child in August, so has been very busy herself! I'll know I'll feel better soon, but I worry about getting older. Maybe I should pick out my own nursing home now:-)

  • Grimbol
    Grimbol Member Posts: 326
    edited September 2011

    It is funny how events like this bring out different sides of people we didn't always expect.  I have 6 kids, grown now, the youngest is 21, 4 of them are married too. They each reacted and took it differently than I would have anticipated.  They are all wonderful and very supportive, but have different roles that I'd thought.  My BFF lives in Maine but she is planning on coming out for my next tx to stay for a few days and then again for the last one.  I have a lot of support at my church too which is nice, we get meals from there when I can't manage to cook too.

  • Vivie
    Vivie Member Posts: 52
    edited September 2011

    Jbangley - Jennifer , I'm glad you liked the laugh! You definitely needed that..Too bad about your brother...my own brother doesn't seem to get it , especially the being deaf part , so we often argue and drive our mother crazy.Fortunately , he got it with the BC shit and listened to me...a big big hug out to you..I've argued with other family members about the whole shit , so I get it.Just keep your child and hubby close , and it'll soon be over!

    Robyn - I jump out of my skin easily too , and that's part of being deaf too..a sudden tap when you can't hear/missed hearing the voice can make you go EEEEK.I'm known for jumping a foot in the air while locking up my apt and a neighbour dares to tap me..it's a miracle I didn't scream last night,lol.

    Today I'm a lot better , wig has been moved , and I hope to be right as rain by next week..we'll see...Oof.

  • rachel5738
    rachel5738 Member Posts: 920
    edited September 2011

    Just stopping in to say hello to the August 2011 chemo thread from a August 2010 person--I am a year out from chemo. It gets easier with time. Good luck to you all.

  • edyem
    edyem Member Posts: 38
    edited October 2011

    rachel - Thanks for the encouragement!

    Taylor777- I'm glad you were able to use the link.  My oncologist confirmed that again yesterday. He briefly explained why, but I have acquired some sort of adult onset ADD and I lost him. I'm seriously considering the marijuana, too but I want to eat it in brownies. I'm afraid the smoke will bother me as I can't tolerate strong smells. About the rads, I also had a grade 3 tumor and I will be having them once chemo is done in January. I had more positive nodes though.  I just want to throw everything I can at this beast!

    Grimbol & Vtellen- Yay for clean test results!  Now you can stop worrying about that and get on with your treatment.  What a relief.  

    Vivie- I think you should take a trip!  I'm wondering where someone from Greece would go to find beauty because your country is gorgeous!  Your wig story was funny to me.  I may have mentioned this before (chemo brain) but my pug, Frank, has a love/hate relationship with my wig. It is on a shelf in my closet. He barks and growls at it when he sees it so I close the door. But if the door is ajar, he can't resist prying it open to take a peek and bark and growl all over again. He doesn't bark at all if it's on my head.  

    JMULL- Tx #3 was tough on me, too.  I hope you feel better soon.  I just had tx #4 yesterday so I'm crossing my fingers that the SE's don't last as long.  

    dianamaps- I had AC #4 yesterday.  My nurses all congratulated me and again assured me that Taxol will be easier. When I went back for my Neulasta today, they congratulated me again as I won't have to have them with Taxol unless I have problems with my WBC's.  Now I have 12 weekly Taxol tx to do.  How many do you have?  

    I hope everyone has a great weekend free of SE's.  

    edye 

  • michelleo13
    michelleo13 Member Posts: 342
    edited October 2011

    Morning everyone!

    So, just when I thought I was home free until tx #5 on Tuesday, I have developed painful sores on the bottoM of my tongue! My tongue feels like it's about 3 sizes too big for my mouth. I can hardly talk or eat. Yuck! It seems strange to me that these would appear on Day 10 after my tx. Hope they go away soon.

    Vivie, LOL on the wig story.

    Jenn, that's too bad about your brother! It's amazing how people can't seem to put themselves in your shoes sometimes and everything is all about them! I think we all have those relatives!

    Hope everyone has a great weekend. I'm going to visit my new Great Niece (born two weeks ago) for the first time tomorrow. Can't wait to meet her.

  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Vivie- my sister (went thru Hodgkin's chemo) sent me a box of stuff she hadn't used. Included were 2 wigs and a wig stand. I put the box of stuff in my closet. A little while later, I went in the bedroom and my cat, Jackdandy, had one of the wigs in his mouth and was crouching around the room growling. He probably thought he had caught one heck of a mouse! I had to chase around after him to get the wig! LOL

    Michelle- bummer on the mouth sores! It is wierd how the SEs seem to vary w/ each treatment. For my 2nd treatment, I didn't even have a chance to gargle before a nasty one popped up on my gum. My onco said that they are coldsores. And wrote me a script for acyclovair, but I didn't get the sores again on this 3rd round, thank goodness! And what is it w/ day 10 that new stuff seems to crop up (just when we think we are over the worst)? My right hand (not chemo side) has broken out in a couple of welts and hives running up my fore arm. A bit concerning. 

  • Grimbol
    Grimbol Member Posts: 326
    edited October 2011

    oh yuck the nasty stuff just keeps on giving!!  My hands anda feet are pretty bad this time too, and it is day 10 today and they are worse than ever!!  They had better start easing up or tx 4 is going to be bad.  However, I am trying to persuade DH that I can't text or my BB as it is too hard and uncomfortable, and a new iphone I think would be mush easier on me!!

    I have alwasy flown to London to visit with my elderly parents at this time of year, except of course not this year.  I am beginning to miss it and feel jipped of yet another part of my life this year!!

    I still find it weird how your emotions can swing around so much.  I can be perfectly fine (I think), then switch to being miserable, crying and even mean!! all in a short time. I'm usually fairly even keeled, so this is all weird to me.

  • Vivie
    Vivie Member Posts: 52
    edited October 2011

    edyem : LOL abt Frank.I used to have a dog too , and  he never liked new things , LOL.He used to growl at my brother's laptop bc that meant less cuddles, LOL.So if my brother wanted to work , he had to do with a laptop AND the dog's head for at least half  hour on his lap...awww.I wonder what his reaction would've been at the wig.

     btw , my brother made me marijuana brownies for me , but I didn't touch them since the research was very conflincting , plus I like to stay away from anything addictive ( except chocolate , lol ) like smoke , drugs , etc.They went moldy and I tossed them , so I imagine some VERY stoned mice were in our garbage , as a neighbour found a mouse that couldn't walk straight....Played innocent and said , oh , really ?

    As for the trip..it's cheaper to go abroad , rather than travel in my own country...yes , that is true.I can all see you staring and going WTF at  that , but it's true..a trip to my friend's island is at the same price of going into London! I still havent decided where I'd want to go ,  but my dream destination would be the States for a 2nd visit, but that's something I can't afford...*sigh*

    michelle have fun visiting the new baby and knowing her! I miss my nephew too much ( 1yr old ) but he's been sick so we're keeping our distance - even when I was in tip top shape colds wiped me out , so I dread to see what'll happen now.

    Ellen - LOL abt Jackdandy.he sure did a proper 'raid' on your closet! I can imagine you chasing him around and trying to not lose your wind! 

    Grimbol - feel better! I know abt the feeling of being gypped out , I also always flew to Athens in October/November to welcome friends that did a brief stint/layover in the ATH airport and I'd be there to show them around and greet them , but this year , a friend is coming from NZ , and I still haven't booked anything..I feel good , but I'm afraid of my energy levels..as for the emotions thing...its something that I have to deal on my own and try to figure out..We have to hang in there and make the best of it , and next year , hopefully , we'll laugh about it..

     It's October , and that means we're closer to the end than ever! I finish out Jan 10th ( hopefully) , so I'm trying to hang on that date.Along with a lot of chocolate.

     as for side effects , this might not be considered a side effect , but my right arm is really sore ..especially the hand part ( where they found a vein ) and have some bruises. Worried about that bc they'realmost black , but since last night , begun to fade.Hoping to heal , but starting to think that maybe I should've asked for a port.On top of that , the really expensive wig has a tear on the inside , and I have to get that fixed.too much tugging and probably some of the rice pelting from the wedding made it tear.Ugh, and my mother mentioned that if we leave it , it might make a bigger rip ( anyone has had that experience ? ) so better to get that looked at.

     Things in Greece are starting to look worse and worse , as I have to pay for a property tax that I don't have the money for , and another tax revenue for which I don't have money either - everything went on the surgery /wig/paraphernalia/books to keep my sanity intact.Oof.Not much money for Christmas either, and my mood isn't helped by the fact that some of the packages I had in the mail went missing.

    BTW , I know this is not the foob forum , but i've had some burning sensation from my TE.feels weird and I worry - appt with the PS is on the 25th  , and it's not too bad , but I worry.

  • edyem
    edyem Member Posts: 38
    edited October 2011
    Grimbol - I feel you on the mood swings.  I hate them.  One moment I'm telling my husband how great I'm feeling and then the next I'm in the bathroom crying about something or the other.  I think this is one of the worst side effects of all.  Luckily, everyone understands and have become good listeners rather than trying to fix what ever problem I'm complaining about.  I used to be such a positive person and I hate what this does to me.  I'm ready to have the old me back.  I hope it happens soon for all of us. 
  • Grimbol
    Grimbol Member Posts: 326
    edited October 2011

    I was thinking back to the last tx and realised it happened at much the same time.  Physically after about 8-9 days I'm picking up, go back to work and think things are good until next time, then 2 days later the emotions fall apart!!  Rough day today, but it'll get better.

    Hope you are all doing 'ok' whatever ok is these days.

  • sandy115
    sandy115 Member Posts: 172
    edited October 2011

    Hi everyone day 6 of taxatore  treatment # 4 but 1st treatment on Taxatore i know why they call it Taxa terrible.Severe Bone pain and horrible taste in mouth no appetite severe rash and sores underarm and breast area some sort of fungal infection has anyone else had this ? Cant wait untill we are all done with these treatments and side effects.It is strange how unsupportive some family members can be during our ordeal but I believe it will make us stronger in the end and be kinder and more gentle to the people that haved helped us through B/C thinking of everyone having S/E of chemo and hope tommorow is a better day.Hugs

  • dianamaps
    dianamaps Member Posts: 50
    edited October 2011

    Edyem:  I would have had 12 Taxols, just like you.  But the (small) hospital here in central NY is out of Taxol, so I'm doing Taxotere instead.  The dosing for Taxotere is once every 3 weeks, for 4 rounds, so still a total of 12 weeks. Plus I'll be doing Herceptin at the same time, same schedule.

    It is strange that it's a common substitute but the dosing is so different...  

    I'm 10 days past AC #4 and still have some mild nausea and the bad-mouth-taste problem. It's starting to fade, but this was the longest it's dragged out... 

  • Grimbol
    Grimbol Member Posts: 326
    edited October 2011

    I am on Taxol, but my dose is every 3 weeks.  I really don't understand why it changes so much either.  I get Herceptin with it too.

  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Dianamaps- I think the 3 weeks is the amount of time it takes for the blood count to work its way back up. I don't get neulesta, but even w/ that, I think your body needs the time to recover. At least that is what my taxotere hand out says! I am 13 days past #3 T/C, and just now getting my taste buds almost normal. So, I have been eating like a maniac! Last treatment is a week from tomorrow!

  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Sandy- no I haven't had fungal sores, that sounds unpleasant! I am having more skin issues this go round, though. Red spots, rashes, a couple of itchy ulcer things.

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