October 2011 Chemo group

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  • auntienance
    auntienance Member Posts: 4,216
    edited October 2011

    Terry, you weren't wrong, I've seen it both ways. Ain't this memory thing a bitch though?

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  • misswim
    misswim Member Posts: 931
    edited October 2011

    Hi girls: I hope you don't mind me popping in but wanted to give you all some words of encouragement. I am from the July 2011 group, and am 10 days out from my last chemo. When I was going through the 8 treatments, I thought it would never end and I would never feel better.

    Happy to say that I am already feeling better. My hair is even coming in a little! Feel free to pop on over to our thread - it might be helpful to see those that have gone before and compare experiences. 

    Just know you have another sister rooting for you! And feel free to PM me if you have any questions I might be able to help with, no matter how small.

    Best wishes to you all. :)

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  • cfdr
    cfdr Member Posts: 549
    edited October 2011

    Carla9112:  I was unusual in that I did radiation before chemo. As far as time, the zaps themselves around only 10-45 seconds, depending on whether or not you have to hold your breath. But it takes some time for them to position you in the machine.That plus waiting room time and changing time, it was usually a 20-30 minute visit. But once I week I'd also get my vitals and see the doctor and nurse, and once a week they would take an x-ray and sometimes redraw the marks. So those visits could take closer to an hour.

    As far as side FX, I breezed through to the end...little to no fatigue, red skin but no blisters. I did 33 tx, the last 8 being "the boost" that focuses just on the incision area. I did get some breast pain (the onc called them "zings") but nothing long-lasting or severe. I also got a bit of swelling along my side, which the onc said could last as long as 6 months. And I had a sore spot on my ribs, just below where the actual radiation ended. My onc advised me not to do any heavey lifting because of the latter.

     A few days after my last treatment, we moved. And no heavy lifting! So I just put things in and took things out of boxes. But that was enough to TOTALLY irritate the boost area. I got a "moist reaction" (which usually only affects big-breasted women, which I'm not) as well as a blister on top of it. Good thing I work at home because I went around the house topless all week long, and was smearing on aquaphor about every 4 hours. It was so painful I took an oxycodone one afternoon and just went to sleep. Once the blister popped, the onc nurse gave me some dressings (mediplex? I forget) that I could use. I found some more at a medical supply store--they were $10 each but worth it.

    So the moral of the story is...baby your babies, and don't think you're done with symptoms by the last treatment! As guilty as I would have felt, I should have not helped at all in the move. All that movement and friction really irritated things.

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  • TAPPY
    TAPPY Member Posts: 283
    edited October 2011

    Zannieis is a Xanax - I take two and it helps me enough to get 5-6 hours of sleep.  I know they are addictive, but dang it, I need it right now so be it....

    I had my hair buzzed today and I feel better not worrying about it any more.

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  • Carla9112
    Carla9112 Member Posts: 162
    edited October 2011

    Hi everyone - thanks Miss Wim for dropping in and reminding us that this chemo will eventually be over.  Right now, it seems like it will never end.  Maybe with the holidays coming the time will seem to go by quicker.  

    Thanks also to you folks that chimed in on the radiation treatments.  I had a double mastectomy so maybe that's why they are doing mine after chemo.   That plus doctors vary from one to another.   

    Ambien has been working great for me.  I don't even dream I sleep so hard.  I didn't want to take it either at first but finally gave in.  I started off at 1/2 pill but then moved up to a whole pill.

    I hope everyone sleeps soundly tonight!  Talk to you tomorrow!

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  • karensimone
    karensimone Member Posts: 16
    edited October 2011

    Hi. I started my first chemo on 10/20. Went to work the next day (Friday) felt fine laid low Sat and Sun and felt ok and went back to work on Monday. Tired like I have never known. Have had a minor headache off and on. I also had Neulesta shot the day after chemo and yesterday I was getting spasms in my back and legs. Has that happened to anyone. They are manageable with tylenol. Also noticed today one side of my head is tender. This must be the beginning of the hair loss. I asked my 16 year old if he wanted to have some fun and buzz my hair. He came to my first chemo. He really wanted to see what it entailed . My oldest is away at school in Florida. I am tying to keep life as normal as possible but today which is 9 days after treatment was kind of weepy. Anyway thanks to everyone who writes here , so helpful and love having a place to learn, vent , advise

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  • Pippen
    Pippen Member Posts: 9
    edited October 2011

    Cool So enjoyed reading how everyone is doing. The wigs, the crazy head coverings. Getting caught up after being away for awhile. Felt pretty good 2nd and 3rd week after treatment, went back to work and could almost walk my normal pace. Cut off the hair on Wednesday and my hubby joined me, now we have shaved heads together! Too funny. The scalp was sore as many of you report and still is with the stubble, but this too shall pass...

     I now have 4 wigs, two bought, two given to me, one really funky (maybe I'll go as a gypsy on Halloween) 2 look almost like my hair, thankfully my hairdresser trimmed them up a bit so they looked more natural around my face.  Definitely take those wigs to a hairdresser who likes you! After treatment Thursday my husband and I went to this lovely boutique in Los Gatos called "The Next Step" and I purchased several head coverings, especially night caps and some cute hats. Am so glad I did, that way if I hate the wigs I will still have cute covers. I found several really cute caps at Target as others have mentioned here. 

    Good news my blood work was all within normal limits, so no shots of Neupogen for me this time around Thank you Jesus! 

    Had to give up a sweet little kitten that I just loved, but she was getting sick and even my vet was concerned for my health with her. She is safe, but I miss her purrs. My other cats don't miss her though. 

    Had second chemo Thursday this week and today the burning tongue sensation has returned as before, but I'm not as tired (since I didn't have surgery this time i think) I had a port put in the day before my first treatment and so I think that caused a lot of exhaustion and pain and feeling crumby that I'm not feeling as much tonight. But tomorrow may be a whole nuther story! 

    Got to go out and go to the International Gift Fair today - loved it, was so fun to shop for Christmas in an atmosphere of friends and something familiar to this time of year. So far noone was sneezing or anything so hopefully I am safe from harm.. ha ha who can tell. Found out that all my worrying about wearing masks was for nothing. My Onc told me that the surgeon masks that you buy in the store do not protect us from flu or colds because of the holes in the sides, but she did say there was a higher numbers type of face mask to wear, unfortunately I didn't write it down so i could remember what it was for future use. I will make a note to ask her again. I passed on the church social tonight though, figured I shouldn't push it in one weekend. 

    After the last treatment I went back to work and by the following Wednesday was so sick I stayed home, so this time am planning on staying home the first two days of next week and maybe go back on Wednesday for a half day... This will make it better I hope. Blessings to all you who are walking this walk and may your Sunday be a good one without too much pain and suffering. 

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  • julsjewels11
    julsjewels11 Member Posts: 66
    edited October 2011

    Just checking in- boy what  a lot to catch up in a couple of days. Thanks everyone for the tips- Biotene and mouthrinse working well. To those having delayed tx's or extra surgery,my heart goes out to you, just something else to deal with.Great to hear from misswim ( I think) at the end of chemo. Always good to have an understanding,encouraging comment. Looks like we're all consistent with the wig thing...one of mine - a cute blonde bob- is maybe okay if I have to go out and don't want to make people uncomfortable but it is hot and I don't think it looks real.Anyone know the etiquette on hats in restaurants? I know men aren't suppose to wear them- but what about us?

    Carla- my rads will be after chemo too- do you think it's because we are triple neg.? And has anyone else got a head that feels like it's full of cotton? I find my eyesight isn't as sharp as it used to be as well. The onc. told me not to get new glasses that this will change too.

    Pippin- my husband shaved his head too but he already had a short buzz- still cute eh?I wish this site had spell check- chemo brain is my excuse.

    Have a great Sunday. Terry, where in Canada do you live? Hugs, Juls

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  • Terry71
    Terry71 Member Posts: 293
    edited October 2011

    Julsjewls: I am In Northbay Ontario,,,,, and have been to Dover for bike week. We lived in Simcoe when our kids were little :-) Dover is awesome and we will be back for sure

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  • cfdr
    cfdr Member Posts: 549
    edited October 2011

    julsjewels--maybe Turner Classic Movies isn't the best source for etiquette, but I figure if Audrey Hepburn or Bette Davis or Ingrid Bergman can wear their stylish chapeus in a restaurant, so can I. I've been wearing berets for 25 years in cooler weather, and I always leave them on, in or out. Hat hair just isn't as big a deal for men as it is for us gals!

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  • Carla9112
    Carla9112 Member Posts: 162
    edited October 2011

    SmileHi Karen - welcome to our group.  Sorry you are here but we'll keep you company as you go through this crap.  Juls - we could be doing radiation for that reason - hate this triple negative stuff but we're going to beat it - right?

    Somebody said the other day that we should get together after we get through all of this stuff.  Some of our members live in great locations - Canada, France, California - even Nashville isn't so bad.  We could put on our cowboy boots; our wigs one last time and kick it up!  Heck we could even ride the electronic bulls if you guys came to Nashville.  We would have to leave the wigs off though because those bulls would throw them off!!  Laughing  I don't know about you but I'm going to start living life to the fullest and doing things I've never done when I get past this chemo and radiation.  I've wasted so many days in my life.  I sound like a country song don't I?

    Well, going to take my kids to lunch - one back to college - one back to work tomorrow.  He's been working with his job here in Nashville for three weeks and has been staying with me. He goes back tomorrow.  Hope I don't have a meltdown when I'm by myself again.

    Hope you have a wonderful day and feel great!

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  • trinity927
    trinity927 Member Posts: 637
    edited October 2011

    Hi to ALL!

    I've been perusing this thread for a while ... and, I have to tell you, you're a strong group of women!   I've seen it written several times that the chemo scares you more than the surgery ... I have to admit I'm definitely in agreement with that sentiment ... I'm scared out of my mind, and becoming depressed ...

    I had a bmx with TEs on October 3rd, and  will be starting chemo in November ... so, I'm not really part of your October group, so I hope you don't kick me out of here ... :)   But, I'm grateful to everyone who shared so much valuable information, so I know what to expect when I do start chemo in the next couple weeks ...

    Does anyone know if there is a November chemo thread?

    And, could someone please tell me the pros and cons of a port vs. IV for chemo treatments?   I'm getting conflicting info ... and, need to make a decision soon ...

    HUGS to ALL!

    Love~Peace~Joy

    Trinity

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  • auntienance
    auntienance Member Posts: 4,216
    edited October 2011
    Hey trinity -- nah, you can hang with us, sorry you have to, but welcome!  I'm sure someone will start a November group soon, but I think most of us probably hang out on more than 1 board.  There's a lot of information out there, so you can't lurk on too many lol!
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  • auntienance
    auntienance Member Posts: 4,216
    edited October 2011

    OK, day 7 from tx #2 and feeling almost normal today.  BUT my hair is definitely growing.  What's up with that ???!!!

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  • julsjewels11
    julsjewels11 Member Posts: 66
    edited October 2011

    Karen: Welcome to our group.We don't want to be here but glad that we have each other

    Terry..again a small world. Lifelong friends of our family are in North Bay- on Lakeshore Drive near Trout Lake. We have visited there many times over the years and have fond memories of swimming in Lake Nippissing ( a lot warmer than Trout Lake as you know) and outings to Calendar. I remember all the worry and fear about the NorAd (or was it BoMar) base when we were young.

    cfdr-thanks- hats on it is!

    Carla- about the triple neg. I am okay with it because my surgeon, when I asked if it was good or bad, casually said- "neither"just different in the way we treat it. I have found it best not to look into it on the net- there's a lot of negativity there. You, like me had no node involvement and that is the most important thing. I was told my prognosis was excellent and that's what I'm going with. Did you have lumpectomy or mastectomy? Hope you cope okay with your sons back to work and school- that must be very hard along with everything else. I'll be thinking of you.  Hugs, Juls

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  • sherrybaby
    sherrybaby Member Posts: 80
    edited October 2011

    Juls, chemo has messed with my eyesight as well. It is worse for the first 3-5 days after tx and then it improves. It lasts about the same amount of time as the 'cotton filled head' feeling I also have.

    Carla, I am right down the road from you in Memphis so we will definately have to look into meeting once we come out the other side of our treatments.

    Just as an FYI, renovation during chemotherapy is not recommended. We had started before my diagnosis and decided to just plough through it, but it has NOT been fun. Hoping that the carpet guy can come measure this week and we will have new carpet in by the next.  

    I hope everyone enjoys the rest of their weekend and if working, doesn't overdo it this week. Smile

    Sherry

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  • Normandy18
    Normandy18 Member Posts: 30
    edited October 2011

    Julsjewls11 and Carla: I will have rads after my chemo as well. I will have a month off and then will have 5 weeks of rads--4days/week.

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  • wildrumara
    wildrumara Member Posts: 450
    edited October 2011

    Hi girls -  Just got back from a walk......boy did the cool Fall air feel good.  It was just what I needed.  Definintely taking longer to bounce back this time.......(10 days after 2nd treatment).  My eyes are also watering and puffy.  Anyone else experiencing this?????  Lashes are starting to fall out too. 

    Terry -  I am in Pittsburgh, but we have friends in North Bay and spent a few days there in 2009 celebrating 24 hours with the Stanley Cup.  Our friend is an NHL coach from North Bay.  Such a beautiful area!!!

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  • auntienance
    auntienance Member Posts: 4,216
    edited October 2011

    Interesting posts on the vision issues.  I was blaming it on the bouncing blood sugars from steroids, but now I'm not so sure.  Thanks for the info!

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  • trinity927
    trinity927 Member Posts: 637
    edited October 2011

    auntienance - Thank you for such a warm welcome!   ... from my heart to yours ...

    HUGS TO ALL!

    Trinity

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2011

    I'm not sure If I introduced myself? but I'm here too. started chemo oct19. It really wasn't as bad as I anticipated. getting my hair buzzed today. just have to get it over with. have been doing PT for my arm/post TE issues. Its really feeling much better. got a lot of ROM back in that arm.

    I am off work will on chemo(I'm nurse in hosp) have anxiety about germs. I work prn anyways. just trying to fill my time. been decluttering lately. couldn't stop crying yest as I was putting away the summer clothes and bringing out the winter. I felt cheated for the crappy part of this summer, then realizing when I bring those clothes back out, most of this will be over. and then my hair started coming out. I got this way before chemo started, and I got through it. just anothr milestone I got to get over.

    this last 2 weeks wasn't so bad, did get a mouth sore, but will get script for Valtrex. had yucky sensitive mouth some. and just couple days tiredness. mostly boredome  

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  • Terry71
    Terry71 Member Posts: 293
    edited October 2011

    Hi Trinity and Welcome to the group, So sorry you have to be here though. NO we will NOT kick you out we are all in this together and are all here for one an other..... There is a Nov group incase your wondering... But your good here :-)  

    Julslewels: LOL Lakeshore drive isnt near Trout Lake road it is actually across town from one an other hehe, nippissing is nice to swim in but way too shallow gotta walk for miles to get wet LOL Oh and the Shad Flies Ewwww those are just gross... Trout lake is OMG SO COLD I never go in there for fear of freezing. Callander is nice too I have a friend that lives there. Yea Its Norad.. Our Military base underground.... Well its become above ground too now, safer I guess, or something lol....  

    wow my eyesight gets messed up too, and cotton head wow, its horrible to say the least!!!!  

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  • mnjclark
    mnjclark Member Posts: 17
    edited October 2011

    Hi Trinity - you asked about the pros and cons of port versus IV.  I really didn't want to have a port, but my Oncologist insisted.  I thought it was going to be this huge bump under my skin and be all gross looking.  It's not.  It's very small.  Can't really even see it when looking in a mirror.  The surgery and recovery to get it wasn't fun.  It hurts - don't let them tell you it doesn't.  Use your pain meds.  I thought the port insertion was worse than the mastectomy.  I also find (now after having the port for 5 weeks) that there are still positions that I might get into where it kinda pulls on the vein a bit and feels a little odd.  Also, don't do things like get poked on it, click your pen on it, or otherwise unsuspectingly bump it.  Kinda smarts. 

    So the reason my Onc insisted, was that he said the chemo can really damage the skin if it leaks out from the IV.  My veins have been notoriously hard to get and often collapse.  They will need to be frequently accessed during chemo treatment and the port just makes it so much easier and painless.  I am VERY glad I have the port.  I put EMLA creme on it a couple hours before going in for treatment and the needle insertion is painless.  All through the treatment I don't feel a thing.  I'm kinda wondering what the removal is going to be like, but that's a ways down the road for me.

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  • julsjewels11
    julsjewels11 Member Posts: 66
    edited October 2011

    Good Monday Morning All: Hope everyone had a restful and well weekend.

    Looks like a bunch of us are having eyesight problems and cotton head. I keep cleaning my glasses thinking that will help- but no-still not right.

    Today DH and I are cleaning and getting things in order for tomorrow when I go for round 3...mixed feelings but at least I'll be over half way with A/C tx's. I wonder if any of this will fall into a pattern? Getting in the groceries that I tolerate and topping up supplies- and drinking tons of water. I think that helped last time with the IV and eliminating the drugs.

    Terry: I meant to write Lakeside Drive and I thought about that while I was writing it but chemo brain mixed things up again. I remember when we first went to visit our friends when I was really young, we arrived late at night- thought we wanted Lakeshore Dr. and drove around in the dark for ages on the wrong side of North Bay! Still haven't learned I guess. The city has spread out a lot since then.

    Dia123- you okay? Haven't heard from you for awhile. Hope you've been welll and just busy. Just wondering where you live. I find it really interesting that so many of us have connections.

    I just want to add that I take my hat off to all of you who are plodding along as normal as can be, going to jobs, caring for families and getting about. I find I lack the motivation for that at present but maybe I'll give myself a kick in the pants now that my cold seems to be improving, and just get moving! As winter sets in here in Ontario that may be a challenge in itself. My onc nurse says " you have to live you know" and this is after all temporary.

    Auntienance- I buzzed my hair a couple of weeks ago and not much of it has fallen out either- just a bit on the top, likely from rubbing it all the time...still can't get used to the look.

    Have a great day All,       Hugs Juls

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  • perts1
    perts1 Member Posts: 62
    edited October 2011

    Terry I'm using you as my guide:  you did it.  I can do it!  (little engine that could - I think I can...)

    I keep losing my temper - not really that often but when I do I feel out of control like I'm manic or something.  I really go into a tailspin!  It's like I can't handle any stress.  I'm guessing it's the steroids???  My hubby just smiles and waits for it to pass - it's pretty quick.

     My eyes are really foggy for about 3 days after treatment and I put drops in every night before bed - I don't know, but it seems to help.  I don't thinks there's any "drops" for my foggy brain!

    I noticed someone suggested xanax and someone else suggested Ativan.  What do you think?

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  • Terry71
    Terry71 Member Posts: 293
    edited October 2011

    Aweee Perts:  WE can and Will All do this, I am the little engine that could, some days I cant and just want to cry, Kinda like today, The joint pain is huting me so bad but just in my hips and knees this time, grrrr I GOT THIS, I will NOT let this get me down!!!! I wish I knew what to take that would help with it though LOL.......... Onc gave me some med apparently its used for EPILEPSY??????? Ummm I dont have that.......I lose my temper too, and it hurts me because Im not like that, Im not an angry person, BUT then I cry for a min and say its just the chemo and its gonna be done soon....  I feel like a nut at times too, hubby just smiles at me and says it will pass sweetie and that makes me smile and helps calm me down. I cant handle stress OMG I lose my fool little mind ( whats left of it anyways) haha, today is a really rough day 4 days after treatment and Im a wreck, Its halloween and my grand daughter is gonna be a kangaroo and is so excited to show gwamma her costume, and I cant go out with her :-(  it breaks my heart.... My eys are still crusty ( wonderful)  and my cotton brain is still here too GRRRRR  Dont know if they have drops for that though, a pill maybe, I hope, I wish LOL Sheeshhhh We sure are TROOPERS huh.. I heard Claratin helps with joint pain, asked my primary nurse and she looked at me like I had 3 heads!!!!!!! And said she would ask the DR, well surprise, never heard back from her on it.... Well enough with my rant... Hope all are doing well and having a GREAT day :-)   Its all in the SUPPORT we are giving each other, and it helps for sure xoxo <3

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  • Terry71
    Terry71 Member Posts: 293
    edited October 2011

    Julsjewels: Ok I thought you meant Lakeside, LOL was just teasin ya.... Ive done that too drove around a town in the dark for hours cause I was Ummm lost haha It has spread out alot the last few years...  Cotton head is horrible DH bought me a brand new car and sometimes I go out get in the car and sit there like a twit and think Hmmm where was I going????? haha FOOD is gross water is aweful, I can drink root beer though, how weird is that?  I am so looking forward to this picc line OUT and END of chemo..... BUT I will stay here and be here chatting with all you wonderful ladies for the next 40 years or more ;-)  

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  • perts1
    perts1 Member Posts: 62
    edited October 2011

    Terry do get the Claritin D from the pharmacist.  You'll only have to take it 5 to 8 days and it helps more than anything. After I took it I had very little pain but I had to go to the pharmacy to get it.  It's not a prescription but they keep it in the pharmacy. 

    I'm not angry either (usually) I'm just out of control now.  A complete slug.  I drink a lot of that lemon, ginger water and it seems to help hydrate as well as keep down nausea. I'm hoping my grandkids stop by tonight so "grammy" can see the little angels(???).

    I can't decide whether a "chick flick night" will help?  GWTW, South Pacific, Fried Green Tomatoes.  Might be good for something!  I'd say a good cry would help but - been there done that - many times!  Take care!  You're at the countdown!!!!

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  • dechi
    dechi Member Posts: 173
    edited October 2011

    Well - Over the hump as far as SE are concerned from my first txt.  That wasn't pleasant.  Slept the entire weekend.  Finally able to eat again.  Looking forward to the next 2-1/2 weeks b/4 I have to go back in again for txt #2...

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  • Terry71
    Terry71 Member Posts: 293
    edited October 2011

    Perts: Does it have to be the D???? I just got claratin minus the D part LOL  I so wanna see my little peanut too, I feel so bad that Im not up to it though, :-(  Had my cry and feel better.....  Thinking its a movie night too!!!!! gonna find one on Netflix Thanks Perts you truely are god sent

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