October 2011 Chemo group

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  • cfdr
    cfdr Member Posts: 549
    edited October 2011

    perts1-- I have ativan and it definitely helps with both the anxiety and also helps me get to sleep at night (sometimes I just take 1/2) for that. I actually started them before chemo because the anticipation was much more stressful than actually going through it. Although I did have a meltdown about 1/2 way through cycle one (chronically here several pages back...big fight with my DH one weekend) and in retrospect maybe popping an ativan and shutting my mouth would have been a choice to consider. I also started on lexapro a week before chemo; it's an antidepressant but also works on anxiety. Definitely been having fewer freakouts. Hate to turn to pills to manage my emotions, but this is not a normal situation so I'm OK with it.

     Also, saw a post on facebook recently that called the Wizard of Oz the ultimate chick flick...two women fighting over a pair of shoes.

    Terry71--Did they give you topamax? I considered going on that as a migraine prevention, but decided against it. But I did notice that it is supposed to help with peripheral neuropathy, which can be a chemo side effect. Although hips are not exactly "peripheral" so I'd think your bone pain was from something else.

    I'm curious what kind of eye problems people are having. The only thing I've noticed is that sometimes I get almost blinded by just looking out a window or up at the sky...it's like someone has just taken a close-up of me with a flash camera. Big white blotch in from of my eyes for several minutes afterwards, can't see a thing. 

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

    I did it!! well my hairdresser did. My head has been shaved. I've got that milestone over. Put on somemakeup/scarf. Feel better. Actually did some work in the yard. thankfully it wasn't raining today.

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  • Terry71
    Terry71 Member Posts: 293
    edited October 2011

    Nope its not that, what you mention is NOT FDA approved in Canada, I am taking  "Gabapentin" May be the same thing. Im thinking the pain is from my wonderful Neulasta injections...... Only 8 days though and Im on day 4 after treatment so should be gone in another 4 days or so...... Its my shoulders, hips, knees and ankles... My toes go numb too so That I know is Neuropathy.... Sorry for venting about it...

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  • Terry71
    Terry71 Member Posts: 293
    edited October 2011

    fredntan: WooHooo way to go sporting the beautiful Look xoxo You go GIRL xoxo

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  • Lady-di
    Lady-di Member Posts: 150
    edited October 2011

    Welcome trinity to our group.



    Fredntan- my first chemo was the first day as yours on the 19th, my second one is this Wednesday. I'm doing AC/T.



    Juls- I live just outside of the Hamilton area in Stoney Creek. I think it takes us about 45 min to an hour to get to Dover. I have been pretty busy the last few days and just trying now to get ready now for my second treatment. Going to make a pot of soup later after I get a few groceries. It seemed like last treatment I was only able to eat soup for a few days.



    Terry- I got the Claritin without the D but didn't use it first go around. My second needle will be fri.



    I noticed that my eyesight wasnt that great for a few days also after my first tx.

    Hope everyone has a great night.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited October 2011

    Julie - I am having my port removed on Wednesday and I'll let you know how it goes.  It is an office procedure, unlike insertion which was done in the hospital.  Mine is also tiny unlike some that are at least double the size.  I must say that mine didn't hurt after insertion and I never needed a pain med.  But then, I just had my TEs removed and didn't even need a Tylenol.  I am starting to think I've got quite the pain threshold!

    For anyone who is debating using a port vs vein IVs for chemo, I have to say that the port is the way to go.  I cannot even imagine my chemo nurse trying to find an acceptable vein every time I had treatment.  My veins are horrible to begin with.   Yes, it's another procedure.  But if your veins blow out from chemo, you'll have problems for the rest of your life. 

    Valtrex is great for mouth sores.  I developed several after the first treatment, my oncologist prescribed generic Valtrex, and that totally solved the problem.  I will take it until a few months after rads.

    Remember to keep drinking, ladies...anything that tastes good.  At least 96 ounces of something the day before treatment and as many days after as you can tolerate.  It helps get rid of the nasty taste that much sooner.

    Hang in there, you are all doing great!

    Michelle

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  • stjude10
    stjude10 Member Posts: 390
    edited October 2011

    Welcome Trinity!

    wildrumara= sooo jealous of the stanley cup thing. Big Hawks fan here. My DD has been granted a make a wish and can't think of anything. Tried to get her to use it on me so I could sit behind the glass at a Hawks game. No deal!

    Carla, I like the idea of getting together in the future. I love passing thru TN on our way to FL. I think the mountains are beautiful.

    Had my first cry, meltdown, whatever it was. Felt good too. I now know that the hole in my breast is from where one of the drains was, and the hole didn't close. Big surprise. Well, on Fri, and Sat. it sprang like a geyser. Fluid everywhere. The 2nd time it did it, I was standing in front of the mirror and the whole picture- cuts, scars, no breast, chopped hair, and fluid shooting out of the hole, was too much to handle. Sat on tub and got it out. Feel like I'm back on task today. It's a new week.

    Hoping everyone has a good Halloween!

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  • WIMusicMaker
    WIMusicMaker Member Posts: 78
    edited October 2011

    Hi! Welcome to the new ladies!

    I am gearing myself up for my new chemo (A/C) tomorrow. I guess I can expect more nausea then I did on T/C as I picked up a prescription for Emend and instead of starting steroids today, I start them tomorrow. Cross your fingers for me that all goes well.

    As more and more ladies are losing your hair I wanted to share with you a hat I found at Target that I LOVE! It is made by Champion and it wicks moisture away from your head. I wear it when I go walking and even around the house. I also wear it under other hats. It is so comfortable and feels nice on my head! I bought a black one but I think there were a few other colors. Also if you sew or know someone who sews, I have been making bandanas in all sorts of fun fabric in a finished size of 30x30. I am going to make one with snowflakes on it next. I ordered some hats from tlc and found they did not fit quite right.

    One last thing, with the extra week off from chemo, I have noticed my nails and hair are growing like crazy. There is hope for all of us after chemo! We will not be hairless forever! 

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  • julsjewels11
    julsjewels11 Member Posts: 66
    edited October 2011

    Hi Ho,Hi Ho, It's up the road I go!  At least tomorrow am for tx3.

    Dia123-glad you were well enough to be away and enjoy the weekend. I'm familiar with Stoney Creek, one of our daughters lives in Westdale so we are up there often. I assume you, too, are at the Juravinski. I understand it has the distinction of having the largest chemo suite in Canada! I too, ate a lot of soup, crackers and poached eggs! You go on Wed. for tx2? Good luck. You'll be fine.

    StJude: we all have had, and will have our meltdowns. Nice knowing we are all in the same boat with the emotional rollercoaster and se's and can vent freely, with understanding and support here.

    cfdr: My eye problems are weird, sort of like I need new glasses-stronger ones! Sometimes they are a bit blurry or just don't focus right. They get tired and leak a lot too!

    I am saddened to not see my Grandies in their costumes tonight so I shall have to be content to see pictures that our DD's will take. I miss the regular and "normal" contact with them all.

    Have a HAPPY HALLOWEEN and a good night!          Juls

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  • mnjclark
    mnjclark Member Posts: 17
    edited October 2011

    Michelle - I thought I had a pretty high pain threshold to.  My port insertion procedure wasn't the smoothest - for what should have been a 45 minute procedure I spent 7 hours at the hospital.  They had to verify why I was even there - the procedure code wasn't documented.  They poked around 5 times for a vein (yes FIVE times!!) and then the anti-nausea meds didn't work for me.  Afterward, they sent my hubby to go get the car THEN told me the discharge instructions and had me sign them (while I was still loopy).  I came home a mess and went to bed.  Next day I was in such pain I took some vicoden from the mastectomy.  Fortunately after 2 days I was back down to tylenol then did well from thereafter.  I'm counting that experience up to just being "not the norm".

    For all you talking about bone pain and Claratin - I had bone pain on days 14-16.  I took Claratin-D (5mg) and it worked for only 4 hours.  It got me wondering if it needed to be -D (pseudoephedrine) or if it's the loratadine that supposedly works.  Even though Claratin is labeled as one tablet every 24 hours, my allergist says you can take up to 10 a day with no problem.  So - to test my theory I switched to a different tablet (Loratadine 10mg) - that worked for me for 3 hours.  I thought, "this is a pain taking this so often".  So, I called the Onc office.  They said, "skip that and use tyleonl or advil".  My platelet count isn't low so I took advil standard dose and it worked fine for 12 hours.  No more messing around with Claratin for me, but interesting to know that it has some analgesic effects.

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  • Lady-di
    Lady-di Member Posts: 150
    edited October 2011

    Juls- yes I go to Jurvinski cancer center also and treatment 2 is on Wednesday. I know westdale well and grew up in Hamilton. I didn't know that, about the largest chemo suite but I was surprised how big it actually is. Good luck to you tomorrow with tx 3.



    WIM- good luck with your new treatment tomorrow also. The target hat sound great but none here in Canada yet. I heard they are coming though. I've noticed that my finger nails have been growing fast too.



    Lori- sorry you have had so much to deal with. I often look in the mirror and wonder how I ended up here. Like I just blinked my eyes and pow. Glad you had a good cry. It's good to just let go sometimes.



    Michele- thanks for the tips, I always find them useful

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  • perts1
    perts1 Member Posts: 62
    edited October 2011

    I was told Claritin D but that's all I know.  Hey, you all, anyone know the difference between the Claritin D and the minus D? 

    A piece of dark chock, girly movies and heavy red wine.  Wow!  Does it get any better?

    Dechi - did you ever think you'd be living for the 2 weeks off?  I didn't.  Sitting at my computer at noon today, talking on the phone I noticed little clumps of hair decorating my keyboard.  Like rats jumping ship!

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

    Ladies - don't think you need the claritin with the D. The D is a decongestant and can raise your blood pressure because of the pseudoephredrine in it. Plain old loratadine works fine. I take it twice a day for allergies and have had little or no bone pain in 2 treatments. I also take Alleve the day before and several days afterwards. This is not effective for everyone, but a lot of women here have found it helpful.

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  • Carla9112
    Carla9112 Member Posts: 162
    edited November 2011

    Hi everyone - well I'm absolutely terrified tonight.  I went to surgeon today to have fluid removed.  It's been building up for a while on both sides (had a double mastectomy).  I noticed over the weekend that my right side (which was my good side - no cancer) was getting bigger and my skin was kind of red.  Today when I went to doctor it was really red and hurt. 

    As I'm sitting in the dr. office waiting I was browsing a health magazine and find an article on inflammatory breast cancer.  It talked about breasts getting red, sore and skin looking like an orange peel - which is exactly how my right side looks.  Of course, my left side's skin has that "orange" look too.  That makes me feel a little better.

    The doctor is having fluid tested but meanwhile I'm scared.  I asked him whether he thought it could be cancer and he said that he thought it was " most likely due to fluid build-up".  Has anyone else had this happen to them?

    Please let me know.

    Thanks!

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  • barbyjean
    barbyjean Member Posts: 108
    edited November 2011

    Happy Halloween ladies. I'm hiding up in my bedroom with the lights off downstairs so no one will come to the door. Too tired for that tonight.

    I'm on day 6 post chemo #2, and this one absolutely laid me out flat! I live alone (divorced) and my family is far away, but even with friends helping me, this one was too hard to handle alone. After my first chemo, my sister came for 5 days, and I have already arranged to have my sisters here for the next two chemos. Today I finally started having a little more energy. So, now I will be more prepared for the next one. It was scary.

    Welcome to all the new members. This discussion board has been the best support for me. I know if all you ladies can get through this, than I can too! But it sure stinks!

    I'm glad to be back.       Barb 

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

    Carla-I used to work in Interventional radiology and its very common after any surgery to have fluid build up.

    in fact on my last day of work. I had all cancer patients and had a lady like you post mastectomy with fluid buildup. 

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  • Tipnas
    Tipnas Member Posts: 99
    edited November 2011

    Hi Ladies, I had my first treatment on Oct 27th and have been posting mostly on the November group.  However, I really enjoy reading all the helpful tips you give here as you share your experiences that are several weeks ahead of mine.  I'm day 6 today and this is the first day that I've felt really tired.  I feel like I'm wearing lead boots and I know I should go for a walk but I just don't feel like it.  I know each of us reacts differently but I was just wondering when most of you experienced your "nedir" in your first cycle and when was the up turn in your energy before your next treatment?  I'm a pretty upbeat peson and have been very positive throughout this experience, but the last day or two I've just felt kind of blah and can't get enthusiastic about or interested in anything.  I'm guess it's the chemo and also I'm not sleeping very well.  I don't feel depressed but not really caring about anything feels a bit wierd.     My daughter and I are going to get our haircut this evening - she's getting hers a little shorter and I'm getting mine a lot shorter!

    Thank you all for you generous sharing, this list is a godsend.

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  • julsjewels11
    julsjewels11 Member Posts: 66
    edited November 2011

    Dia 123: Just wishing you well on your tx tomorrow. I went for number 3 today and all well as scheduled. Keep in touch, thinking of you,    Hugs, Juls

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  • julsjewels11
    julsjewels11 Member Posts: 66
    edited November 2011

    dia123: Chemo brain set in. Meant to mention that my nurse this round suggested sucking on ice chips to maybe help with mouth taste etc. will it help- we'll see but I figured it couldn't hurt and they have them available in the chemo suite. Good luck,Juls

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  • Lady-di
    Lady-di Member Posts: 150
    edited November 2011

    Tipnas- for me it was around day 8 when my energy started getting better but ive only had 1 tx so far. Up till that point I was napping and generally tired.



    Juls- I think I will try the ice chips this time. I was thinking of you earlier today and hope you have a good night. Is your cold finally gone?



    Good luck to everyone having treatments this week... We can do this'!!!!!!!!'!!!

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  • LoriKristine
    LoriKristine Member Posts: 17
    edited November 2011

    I had A/C #3 today- just one more!!! Then on to Taxol for 12 weeks.



    Julsjewels11- I have been doing the ice chips while they push the adria-(red devil) and I have not had a sore yet, but the taste buds a blunted though.



    Carla9112- I have a fluid pocket on the left (cancer side) towards the center of my chest. my skin is not red or dimpled but I definitely have a bulge. It looks like the tiniest boob. I had both breasts removed too. The surgeon said it will get absorbed but will take weeks though. If the swelling and redness get severe enough the surgeon can drain them with a needle aspiration.



    Tipnas- I learned a new word today- thank you :) my nedir ( I had to look this word up) is thursday- I take chemo on Tuesday and am slightly nauseated Wednesday. Thursday I ache really bad and the nausea is extreme to where I take Zofran phenergan and Ativan. I usually just stay in bed all day. Friday I try to get food and water in and walk around a bit and Saturday I feel well enough to go to

    work.



    I am bald as of 10 days ago. It's still a weird feeling. I was very embarrassed about it when I went back to work last week but that is fading. I still don't recognize myself in a mirror but the emotions are lessening. In other words I'm getting more comfortable with it. I just keep telling myself this is only temporary.



    Keep your chin up Ladies!!

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  • TAPPY
    TAPPY Member Posts: 283
    edited November 2011

    Ice chips really helped me the first time with the red devil

     I got another wig and they are not to bad, just itchy !!!

    Sure saves time in the morning....and I packed up all my hair products and do dads ...wont need em for awhile.

    I have gone back to work and I am just whipped by the end of the day...tired like I have never known...but it does me good to work and keep my brain busy,

    Hope all the Oct gals are hanging in there...gearing up for round two this Thursday,  I usually feel bad for two to three days off and on..so will really try to rest up now one weekends.

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  • stjude10
    stjude10 Member Posts: 390
    edited November 2011

    I'm sticking w/my Oct. gals, even tho I only had 1 tx in Oct.

    Met w/MO today and we are proceeding (as of now) w/tx next Tues. I will get half of the Decadron before and no Dex to take at home. He feels I did so well, I don't need all that, and my eyesight shouldn't fail so much. I'm a bit worried that I won't do well w/out the same amount of steroids. We'll see.

    I see my PS tomorrow to get hole fixed. I feel like a pasta strainer! No sign of infection which is great!

    Good luck to all the gals getting tx this week. Hope you all do great.

    Oh, and scalp is getting sore, and I can literally pull my hair out.

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  • flajay
    flajay Member Posts: 1
    edited November 2011

    Hi ladies. I don't participate much in boards but I have been reading many of the posts here and I thought I would like to join in. I started chemo on 10/11 (DD AC/T) and I've had 2 cycles. I'm glad to see most are able to deal with their side effects very well and many of you are still working. I have been trying to work through the chemo but I think I might have to take disability. I have tried everything for nausea (I'm a pharmacist so I push my onc to try every possiblity) but I can't hold food down for at least 5 days after each treatment. The first treatment I couldn't hold fluids down either but we found that a cocktail of Aloxi, dex, Sancuso, and Marinol work for me to at least keep some liquid down. I just started losing my hair, but I shaved it about a week after my first treatment. Now, I'm severely neutropenic (even with Neulasta) and I spiked a fever today. My job requires me to be around sick people all the time, hence the idea to go back on disability.

    Did anyone have to do fertility preservation before chemo? I'm 35 and I don't have kids yet. We have been trying since 2008, but we were only pregnant once and it didn't last long. My fertility specialist thinks that the cancer may have suppressed my ability to get pregnant (thank God - triple positive - pregnancy could have been very bad). Anyway, we were able to get 5 embryos and they are on ice for now. We like to say we have the coolest kids Wink

    Good luck to all of you having treatment this week. I hope I can get to know all of you a little better here.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited November 2011

    Flajay - have you tried using a scopolamine patch in addition to your other nausea cocktails?  I used it during every chemo treatment except for the last two Taxols when I was confident that I would be ok.  And I use it for every procedure that requires anesthesia.  It works like a charm for me. The rest of my anti-nausea cocktail was Emend, 6 mg decadron, aloxi, and one hour of hydration before the adriamycin push.  Also, try to drink 96 ounces of fluids on the day before and during treatment.  It gives you a good start and should help prevent dehydration.

    Hugs to all you brave ladies!

    Michelle

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  • trinity927
    trinity927 Member Posts: 637
    edited November 2011

    mnjclark - Thank you so very much for sharing your experience about the port.  I don't want one either, but my oncologist is insisting that I get one, which I'm scheduled for next week.  

    It really hurts that much?  I thought my bmx was bad.   uh-oh ... I'm scared!  

    And, I kept telling my oncologist that I have TEs in place ... and, the TEs are up high, next to my clavicle it seems ... I don't see how they're going to fit the port in without hitting the TEs ... has anyone else had issues regarding this?   

    HUGS TO ALL!

    Love~Peace~Joy

    Trinity

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  • mnjclark
    mnjclark Member Posts: 17
    edited November 2011

    Trinity - for me, the port hurt worse than the mastectomy.  Hopefully, it won't be the same for you.  I attribute a lot of mine to the staff where I had it done.  It was done by a surgical PA and not a doctor.  She was very nice and explained the procedure well.  But, just the whole experience wasn't as top notch as what I had with the mastectomy.

     Don't worry - you'll be glad you have it in the long run.  One painless little poke on treatment day is sooo much better than fishing for veins.

     Julie~

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  • julsjewels11
    julsjewels11 Member Posts: 66
    edited November 2011

    dia123- thinking of you today and hope you have managable se's or better still- none! I was good yesterday and seem fine so far today. My mouth is good- maybe the ice chips? but I find that lemon in my water bottle makes it taste a bit better and it's good for the cold that is finally on the mend- thanks for asking about it. I have been trying to drink at least 12 glasses of water a day and is it hard- I feel like I shall start to slosh, but if it flushes the red devil out then it's worth it. My face is flushed today (steroids I assume).

    lorikristin-I'm sticking with the icechips during red devil- can't hurt!

    flajay-welcome to this helpful, knowledgable. caring and supportive group of ladies. I think part of this whole chemo journey is trying what has worked for others,knowing that we are not in this alone, and we will get through it- it is all temporary.

    It's strange how as time goes on and the group grows we seem more like family-sisters I suppose even though are lives and locations are so varied. Such a wonderful group of ladies that I wouldn't have met except for this cancer journey. Thanks to all,   Hugs and have a great day with few se's.

    Best of luck to those with treatments today.                            Juls

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  • perts1
    perts1 Member Posts: 62
    edited November 2011

    What is the "Red Devil"?  I haven't heard of that one.  And what about toothpaste?  I have Sensodyne and ProEnamel - are these OK?  I take my next treatment on Tuesday and think I will take a big snow cone!  Maybe lots of shaved ice with a light lemon syrup?  I haven't thought of snow cones in years but it makes some sense to me. 

    Trinity - I had no problem getting the port put in. Very little discomfort and just a tad bit sore afterward.  It's still a little tender but that's about all.  I accidently touch it once in a while and I kinda freak out that there's a metal device in my chest. 

    I am going to take some sort of a mild laxative on Sunday and Monday because I don't want to go through being constipated again.  Also, I'm taking your advice and drinking tons of water for a couple of days.  And of course, my best friend: lemon & ginger water - hot or cold.  

    Last night I got so cold I thought I'd freeze!  It lasted about an hour & a half - then I got hot.  This is such a crazy trip - does anyone else have trouble with their body thermostat?

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  • NancyJill
    NancyJill Member Posts: 218
    edited November 2011
    stjude: hope your sew-up on the drain hole went well flajay--love that you saved embryos--very cool--hope is great! trinity--my port placement hurt a little, too, but I am so glad that I have it--just needed a bit of painkillers for a few days and had to be careful about how I moved my arm/shoulder for a couple weeks--it wasn't as bad as my lumpectomy--plus my drugs are very irritating and it's better not to have more opportunities to leak onto surrounding skin. Zannies must mean Xanax--Ambien, Ativan, Benedryl--whatever it takes!  Of course I forgot to take any of them after treatment #3 yesterday since I got drowsy, and ended up waking up before 7 feeling good on steroids! So no harm done. Anyone else who is changing therapies: sometimes the new drug is better, like mine!
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