Has anyone started a forum for Chemo in Dec 2008?

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  • mary5454
    mary5454 Member Posts: 89
    edited January 2009

    In January issue of Prevention magazine on page 120 they have a brief article about reduced radiation treatments- that's what I am (eventually ) doing. My radiation onc told me that in Canada  and Eurpoe they have been doing it for years - no change in effectiveness - so withthe boost it will be  20 treatments instead of 35. (they increase the radiation at each one).

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  • Firni
    Firni Member Posts: 1,519
    edited January 2009

    Caroline, are you taking benadryl for the itchiness?  My onc nurse said the rash I have on my face, and yes it had spread to my eyelids too, was probably a histamine reaction to something.  And to take benadryl and use benadryl cream.  ( Don't put Benedryl on your eyes)  Well that helped with the itching, but now my skin feels like leather on my face. Benadryl is not a good face moisturizer.  I just have today yet on the steroids and the hand/foot stuff is almost gone.  The rash on my hands is still there but clearing up on my face.  I knew chemo wouldn't be easy, I just wasn't prepared for it to ruin my skin and visibly age me so much.  I look like hell.

    Cat, it seems like rashes and cellulitus have been the SEs of choice this go round.  I wouldn't mess around with the rash under your breast.  Call your onc and find out what to do or be sure to bring it up tomorrow.  I know I have to keep reminding myself that the rules on self treatment are different with chemo.  What used to be a minor thing can now turn into something major.    I hope your well is ok.  Nothing like more problems.

    Carie, I hope your hubby makes it home to you today.  That will make many things better for both of you.

    I'm glad to hear that in spite of all the SEs people are having there are some really good days thrown in.  We all need those to keep going. 

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  • Grancy11
    Grancy11 Member Posts: 31
    edited January 2009

    hi, Divas, sorry so many seem to be having bad SE's, glad it's better for some and hope the rest of you start feeling better soon...this is Day 3 of TX2 for me and so far pretty good, just a little tireder and shakier than TX1...I take steriods day before and after treatment, so this will be first day without them...nothing tastes good but so far nothing nasty either except the one glass of wine I tried - just have to remember to make myself eat a little something fairly often...my treatment schedule is every 3 weeks so the last few days before TX2 I was feeling pretty good and now down again, pretty daunting but we will get through it and it won't last forever!  We're at war with BC and gonna win!

    love you all, my family and friends are so supportive and helpful but you who are going through the same things mean so much to me and I can't even imagine trying to do it without you...

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  • Texas357
    Texas357 Member Posts: 1,552
    edited January 2009

    Hi all,

    Back from my gyno appointment and just shaking mad. I'm badly torn and bruised from even trying to have sex, and he's claiming it's not chemo-related but because I stopped taking estrogen when I was diagnosed.

    Here's the kicker: He says this happens to all his post-menopausal patients when they stop taking estrogen. (He insisted that I take estrogen after my hysterectomy in 2007.) Huh? My sister is 60 and still has a happy sex life without taking hormone replacements.  

    Looks like I'll be in a wait and see mode until I the effects of chemo are out of my system. Either that or I'll have to be celibate for the rest of my life.

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  • Grancy11
    Grancy11 Member Posts: 31
    edited January 2009

    Texas - sounds like you need a new GYN guy! 

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  • horsercn
    horsercn Member Posts: 32
    edited January 2009

    Hey everyone....haven't been able to catch up with everyone.   Wanted to let everyone know what has happened to me and what to look for.  Last Saturday i wasn't feeling all that great, had a low grade fever, not over 100.5, and my right arm was hurting so much that I thought someone should just cut it off.  Called the doc and she said to go to emergency room.  Ended up I have, all on my right side, blood clots in my lungs, under my arm and under the collar bone.  They said it's not complications from chemo, which I have been lucky enough not to have any accept my hair falling out, but a complication of the power port that was put in on 12/16/08.  So please everyone you don't have to be running a fever for something to be wrong....if I had not listened to my body like they tell you to do I don't know what would have happened.  I stayed in the hospital for 5 days and now have to take blood thinners and give myself a shot in the stomach twice a day.  They are trying to get the right consistantcy?, not too thin and not too thick.  My 4th and final AC plus Neulasta treatment is 1/26/09 and then I go weekly for 12 weeks with the taxol and herceptin.  Simvog please update that for me I think you had it wrong on the visits.   Hope everyone is doing better with their side effects and God be with us all....it's all in his hands.

    Tricia

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  • Bold
    Bold Member Posts: 692
    edited January 2009

    Horsercn:

    I was so upset for you. That must of been very frightening. I am grateful that you listened to your body and got in to the hospital. I am also grateful that I do not even have a port. My veins are juicy and I hope that they will hold out for the year of herceptin following my next 5 treatments. I am going to say a prayer for you so that you will not have to stay on the thinners and you will be back to snuff quickly.

    Texas357:

    What a bunch of rubbish in my opinion. I have been menopausal for 9 years. I went early at 46 years old. I have enjoyed my sex life with the help of KY. I tried the his and hers and its great too. I have never used hrt. Get a second opinion on that. Our body's are suppose to be thing of pleasure not just instruments that we work with. That pleasure should not just be food either but touch and music, art and SEX. Enough said.

    Graciy11:

    Your right ahead of me tx 2 on Monday. Watching you like a hawk. Keep us posted.

    Mary5454:

    I am starting my research on Rads too. I know that there is a new type of radiation machine (real expensive) that they can calculate the depth of frequency. This would enable them to administer stronger doses with no SE. This is huge! It means that it also will not burn the dermal either. I know that they have one of these machines in Boston and I think that they have one in Beverly Hill CA. I live in CA so I am going to pursue this. I do not know if they use it for breast cancer as it is very effective on brain and lung etc.. So I will let the board know as I find out more.

    Personally I feel wonderful!   5 days till treatment. I am going to get done as much as I can before the low time.

    Wish everyone everything all the time.

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  • bobcat
    bobcat Member Posts: 681
    edited January 2009

    Hi All -

    Hope everyone's loved ones get home safe.  These SE's are not pleasant and I have not been able to post for a couple of days.  My brain is mush and can't remember much. I miswrote a bunch of checks!   I have pain in my left wrist for a week and now worried about blood clots because I have a previous history.  I'll check on Friday when I have my 3rd TC.  This second round has not been as easy - much more tired and fatigued with very 'thin skin' emotionally- anyone else experience this?    I feel so sorry for my SO because the sex thing is just not happenin' - I try and be dutiful but it mostly hurts and my head is not into it nor is my body.  I hope the SE's after the 3rd round are not as severe.  Sorry for complaining - trying to buck up and be strong.

    B

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited January 2009

    Ooohh, I found this great organization, Cleaning for a reason. It's a free cleaning service for cancer patient, 4 monthly cleaning for 4 months. I just sent them a request, here's the link http://cleaningforareason.org/cancerpatients.html fill the form, if you click on Maid Services, you will find out if they have a service in your area. There's 2 in mine :) There has to be some bonuses to this cancer ;)

    Feeling better, I talked to my onc office, they say dry skin, sounds too easy! LOL! I did take a big nap this afternoon. Going in tomorrow and getting ready for tx3!

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  • bobcat
    bobcat Member Posts: 681
    edited January 2009

    I love the free cleaning!  Right now I pay to have my house cleaned every two weeks but love my ladies and they are BC survivors - hey, there's a business!  Anyway, thanks for the link and I will check it out because our finances are getting more and more dismal by the day with all the medical outlays.

    Try fish oil for dry skin and Eucerin lotion - anything without alcohol.  Also, Calendula cream from health food store for face and scalp.  I will check out your website when I have a chance.  Everyone stay brave and strong.

    Bobbi

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  • zuffa
    zuffa Member Posts: 95
    edited January 2009

    Bold - I believe you are referring to proton therapy -- there are four-five centers throughout the US with this equipment.  In addition to the two you mentioned, one is in Jacksonville, FL at the University of Florida. 

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  • Lainey64
    Lainey64 Member Posts: 740
    edited January 2009

    Hi Divas.  Today is A/C #4.  I'm so anxious to get it over with.  But I'm also filled with that nervous kind of feeling I get everytime before TX.  I came into work this morning because my appt is not until 1:30.  I figured I'd get something productive done this morning while I'm feeling good.  My Onc visit yesterday went well.  My WBC count is up to 11,000 which is he said is good.  So after today I can kiss the A/C goodbye and start the Taxol.  He told me that 70% of patients handle that better so I'm hoping I will be in that percentile!

    Bobcat - Are you taking any blood thinner medication such as Coumadin or Warfarin?  My Onc put me on a 1mg dose right after I had my port put in.  If you are concerned you should ask about it.  I hope your SE's get better.  My brain gets mushy at times too.  My DBF helps me with the bills and checks because I have already made one mistake too and do not want to repeat it!

    Carie - Did you DH make it yet?  I hope so!

    Caroline - thanks for the housecleaning tip!  My house fortunately is very small but this is a great service!

    Good luck today ladies!  I'm thinking of you all :)

    Love, Elaine

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  • mmliv
    mmliv Member Posts: 128
    edited January 2009

    Day 3 after TC #3 - Other than being a bit more tired, I actually feel pretty good. Not as much pain from the Nuelasta shot this time - so that is a big relief. I was asking the onc nurse about trying to diminish the fatigue that I get on days 4 and 5 and she said it was due to a low red blood cell count. I then asked if eating iron rich foods would help..... she said probably not; but since I am trying to eat healthful foods.... I am ensuring that I am getting good sources of iron.

    Dry skin - Lotion, lotion, lotion! Though I bought some brands that were recommended, I discovered they did have alcohol. Well, I've been using them and am not having a problem - but every time I put lotion on my hands after washing - I also do face, arms, and legs. With cold weather and warm house, relative humidity takes a beating! 

    Exercising - Though I have been good about walking 3 miles four to five days a week I've discovered that my upper body strength is rapidly decreasing. Anybody else noticing strength issues? I'm going to start an upper body workout now to my fitness routine. I am going to have to look up Zumba!

    Hormone therapy - I am scheduled to go on Femara. I will just wait and see what the SEs are. My cancer likes estrogen and it is also an aggressive type... so I am going at it full bore!

    Carie -  did your DH make it to you?

    SDavis, Brenny - haven't heard from you for awhile... you all OK?

    Good luck to all the ladies going into chemo this week. Thanking for sharing so that we all can learn! 

    Mary 

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  • Lainey64
    Lainey64 Member Posts: 740
    edited January 2009

    Mary - my red blood cell count is also low.  It was 10.3 yesterday and my Onc said a normal count would be 12.  I get tired and winded pretty quick these days.  I asked him what I could do to improve it and he said there wasn't anything.  So I'm trying to improve my nutrition anyway!

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  • lktracey
    lktracey Member Posts: 110
    edited January 2009

    simvog: Just to update, I am scheduled for TC#3 on Jan 27th.

    Thanks for keeping up the list!

    Lauren

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  • busqueen
    busqueen Member Posts: 176
    edited January 2009

    Elaine ~ I hope you have a very noneventful day.:-)  I'm sure it feels good to know after today you are half-way there.  I can't wait to be done with A/C and be able to move on to the 'next phase.'

    I am battling the chest cold from heck!!  I'm so miserable.  {whine, whine...}  The onc nurse said as long as I'm not running a fever to not worry too much and just take whatever I need to try to feel better.  But this is day 5 and this crud is not clearing up.  So now I'm paranoid that its going to turn into pneumonia or something equally nasty.

    And no, my poor DH has not made it home yet.  Yesterday he only made it a few hours because he was on the stretch of I-80 in Iowa that was apparently a sheet of ice.  I feel even worse now because we had made an "alternate" slightly, longer route for him to keep him far away from Chicago, but that sent him straight into an ice storm.  Duh.  This morning he woke up to discover a flat tire.  Sigh.  So keep your fingers crossed that he'll make it today, otherwise he'll probably start drinking in some podunk bar in the middle of Iowa!:-)

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  • CindaD
    CindaD Member Posts: 120
    edited January 2009

    Awww Carie, I hope Hubby makes it today, I thought for sure I'd read that he was home when I logged on today.  What a worry.  I hope the weather starts to cooperate and you can give him a kiss soon!

     About the RBC count, I was told that the chemo deminshes those as well, and even if we pump ourselves up with iron, it won't help because the RBC's aren't there to pick up the iron.  The onc girls told me that if I become to anemic they'll give me a transfusion.  I'm still eating healthy, can't hurt!

    mmliv, I've been doing some strength training and I think it makes me feel better, I'm going to try to get off the sofa more with tx#3 and see if it helps.  I said that last time and still layed there!  Maybe I'll actually do it this time!

    Do something fun today ladies!

    Cinda

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  • Brenny
    Brenny Member Posts: 116
    edited January 2009

    Hi ladies,

    Thanks for missing me - I have been reading, just not posting a lot.  Had tx3 yesterday and all is well, even the constipation "end" of it (took pericolace the day before, the day of, and this am and all is well).

    Was having a little personal pity party for myself yesterday -- came home from chemo (8:30-2:00) and my country driveway needed shoveling.  Out there in my beanie and bald head and shoveling, back hurting, thinking "I just spent the day in chemo ...this is surreal".  And then we are having a real frigid spell in OH and carried in about 8 loads of wood....again normal things for me to do but NOT on a chemo day!  And the sad thing is I have a grown son only 2 miles away that actually was off work yesterday.....but if you have to ask.......it's kind of like asking do you love me??? Have stopped seeing the boyfriend of two years - don't think he was ready to handle this whole thing,,,just a bit depressed, I guess.

    But I am in better frame of mind today....working from home and no particular day 2 issues.  Hope you all are well. 

    3 down, 1 to go -- yeah!!!

    Brenny

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  • Bold
    Bold Member Posts: 692
    edited January 2009

    Sweet Brenny:I really understand how you feel. My situation is different from yours, but I remember the night of my surgery I broke a giant beautiful glass vase. I had to sweep then get the vacuum etc.. While my husband was asleep in the other room. I know he heard the crash and the noise of the vacuum. But if I had to ask blah blah. I have done huge physical jobs since being on chemo too. I felt sorry for me too. Then I thought damn I good. I can do almost anything. I just get real tired afterward. I have always been independent and although I will take help when someone really means it but I am not a big asker for help. I think its funny that when you are first DX all you friend are all over saying if there is anything that you need. But there is very little follow through. ENOUGH of that. We both have a lot to be thankful for too. If he did not stick around to help you out he is not a life mate. I pray that you get all the love and support that you need.

    In Solidarity

    Rita

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  • lisasayers
    lisasayers Member Posts: 850
    edited January 2009

    Hello Ladies

     Just got back from my blood work...it's a go for tomorrow TC #3 and then only one more to go after that!  My RBC are also low....must be the norm.  I would like to know the difference in numbers...Elaine you said your RBC was 10.3 and your ONC said 12 was normal.  The reference interval I have for RBC is 3.80-5.10 for normal range???????  Are there differenc number scales they use? 

    My counts are a bit off because I was fighting the cellulitis but I've been on Keflex for six days now and it is clearing up.

    I'm sorry to hear about all that everybody is going through!  Some days it seems like we are getting everything thrown at us!

    mmliv...YES!  Check out Zumba.  It keeps me sane and I feel so much better when I work out.  I teach an hour six days a week and then on some days I do more as I'm working on new stuff.  You can find some of our older DVD's on Ebay if you can't find a class up there!

    Bold...I have found that since people see me going about life without letting this "thing" get to me, that nobody offers help...even though there are days I would take it!  Or even just give me a call to see how I'm feeling.  I told my friends the other day...don't hide from me...I need to hear from you!  I'm not napping...call! LOL

    Well time to eat again! LOL  I went shopping today and stocked up on the spicy stuff, fruits and veggies and vanilla ice cream and gingeral for floats when my tongue starts to hurt!

    Hang in there sisters....you are WAY STRONGER than this "thing"!

    Hugs

    Lisa

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  • lisasayers
    lisasayers Member Posts: 850
    edited January 2009

    Oh, and simvog, when you update the list, you can add my last and final treatment TC#4 February 6!!!!!!!!!!!!!!!!!

     Thanks for all you do!!!!!!!!!!!!

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  • apfuentes
    apfuentes Member Posts: 95
    edited January 2009

    Hi Simvog - my next treatment TC#3 is Jan 27th.  Thanks so much! 

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  • bobcat
    bobcat Member Posts: 681
    edited January 2009

    Just sent my post into the ether....

    It was just my rant anyway about feeling sorry for myself.

    simvog - I have my 3rd TC tomorrow and then my last on Feb 6 - yeah.

    Carrie - hope your hubby makes it home - he is as lonely for you as you for him.

    Bold and Lisasayers - know what you mean about people, they call when you get the DX and then forget you exist.  Just call me!!  I do have one friend that calls me weekly without fail and another that makes me a meal that lasts me a whole week after each treatment.  I love her for that.  My sisters are good about calling but my brother is MIA.  I go to the y to spin and run and people see you going about your day and then I pull into the garage and have a good cry - too funny.

    I am having worse and worse chemo brain - forgetting conversations, forgetting names and what I'm even talking about.  Hope this goes away soon as I'm in business for myself with my partner and I pay all the bills.  Wrote out the rent check $50 short last week!

    Sorry to go on and on - just anxious about tomorrow.  Take care everyone.  Stay warm.  It's 12 in PA where I am.  I feel sorry for those people that crashed in the cold Hudson but at least they all survived!!

    Good luck to everyone with treatments tomorrow and next weeks.  Hugs, Bobbi

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  • lisasayers
    lisasayers Member Posts: 850
    edited January 2009

    Bobcat I'm doing TC # 3 tomorrow too!  I'm also in PA....and it's 7 here right now before wind chill

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  • Bold
    Bold Member Posts: 692
    edited January 2009

    Congrats on so many nearing the end. I can not wait to say one more to go. But I am going in for tx 2 on Monday. YIPEEE (not) Then only 4more to go. Baby steps.

    I have hung on to my hair as long as I can. Tomorrow I will get the buzzzzz kill. STINKS. I think I am the last to go I think. So no sympathy and tea here. Just the bald and the beautiful.

    Bobcat:I have done some research on Chemo brain and rest assured that your cognitive power will come back. I guess you know that if there are any stray cancer cells in your brain they are gone girl. They will be FORGOTTEN. Sorry that you have to go through that though. It can be embarrassing. Hang in there.

    Busqueen: You are going to get lucky this weekend I am sure. LOL I hope he is home safe and sound.

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  • Bold
    Bold Member Posts: 692
    edited January 2009

    Good luck tomorrow I forgot to say. You will be in my prayers.

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  • CindaD
    CindaD Member Posts: 120
    edited January 2009

    Brenny, sorry you had such a sh*tty day, I hope today is better for you.  I think you are in need of some pampering, so do something fun or indulgent today. Take some time for yourself.  I'm not making any excuses for your son, but men in general can be clueless when it comes to this stuff, and he's just not thinking that you could use the help, esp. when he sees you being so strong.  Give him a little push!  I'm not going to say what I think about your ex, it might get me kicked off of the boards.  (((( HUGS )))) to you girl, hang in there.

    Good luck to everyone getting chemo today!

    Cinda

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  • lisasayers
    lisasayers Member Posts: 850
    edited January 2009

    Heading out for TX#3 and it is a whopping 5 below here...before windchill!

    Just found this website and thought I would share...great information!  http://www.drhyman.com/7-Keys-Introduction.aspx

    Stay warm! 

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  • Lainey64
    Lainey64 Member Posts: 740
    edited January 2009

    Well A/C #4 is done!  Yesterday for some reason was a hard day for me.  I didn't want to be there.  I thought the pre-meds and fluids were taking way to long to finish and I was getting a little upset inside and then I realized that the nurse started the Cytoxin drip first.  I was confused because the Adiamycin was still sitting there.  I asked her and she said they were running behind and normally push the Adria first but she didn't want me to have to wait.  So that made me feel better.  Afterwards I got myself a big hotdog and came home and ate and took a nice nap.  I never have trouble sleeping after TX's.  I wonder if that will change once I start Taxol. 

    Lisa:  Good luck with #3 today!  Stay warm! I dont' know what measure he's using for my RBC.  Maybe he was talking about my iron level?  Hmm I'll ask next time.

    Carie:  How close is your husband now?  The weather everywhere is just so horrible.  I hope he's closer.

    Brenny:  *Hugs*  I'm sorry you had a bad day.  I was doing laundry the other night at 9 p.m. mumbling and grumbling under my breath.  So I know how you feel.  But then I always thank God before I go to sleep for allowing me to be able to do things. Although they aren't much fun at the time!

    Bobcat:  Good luck with your TX today.  I am having some issues with chemo brain as well.  I hope this will pass!

    I hope every stays warm and remembers how appreciated and loved you all are.

    Elaine 

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  • busqueen
    busqueen Member Posts: 176
    edited January 2009

    Good morning everybody from the frozen tundra.  The actual temp here is -21.  Sheesh.  My patio door has a very pretty icy pattern on it.:-)  Yes, DH finally made it.  Unfortunately I wasn't home to welcome him because I was at the emergency room with my dad.  Who is getting a pacemaker today. And I finally started a fever with my chest crud.  And on it goes.:-)  I hope everybody has the best day possible.  Brenny, I hope your frame of mind is even better today.

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