Starting Chemo in December 2013

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  • kimie06
    kimie06 Member Posts: 215
    edited April 2014

    oh my goodness I am so behind !!

    congrats to all who are done chemo !!! a big high five !!!  we have certainly all come very far, I remember at one point all of us saying how shitty we felt and were we done yet and look at us now .  so happy for everyone

    Jodi - wig looks awesome ..

    djj - your dreams came true with no chemo..:) 

    Im still waiting to find out where they are sending me for rads I am so pissed off at this point as I should have started 2 weeks ago I cant plan anything its driving me nuts !

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    kimie- so sorry:(. I am depressed about rads too.  Completely overwhelmed with having to live in Houston for over 6 weeks.  Really stressing, so I completely get you;). Stupid medical apartment people won't get back with me either!!!

  • kjfromca
    kjfromca Member Posts: 283
    edited April 2014

    Morning ladies - 

    Jackie - Is this your last week of chemo?  I thought I read that on an earlier post.  I hope so.

    Kimie & Jodi - Hoping this is your week to get your rads schedules set up.

    I am 6 weeks PFC - I now see hair coming in without having to use a magnifying mirror - lol  Also, my brows and lashes are coming in without latisse.  I did lose pretty much all my brows after I was finished with Taxol, so just wanted to send out some encouragement to you all.  

    Kim

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    Warning.... Taxol raging vent ahead

    "Really mom!! You knew my last chemo was Thursdsy.  You said you would help. So why act so put out to come over on your lunch break from your house Less than 3 miles away to help me feed the kids lunch and get baby down for a nap. Then act put out again when I ask for help when you get off work for an hour or two. And NO you do not HAVE to ride your horse today!! As a matter if fact you can wait until next week to ride your stinking horse.   I have had chemo. !!! Ugh!!!!

    Thank you....

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2014

    kimie and Jodi-let's hope rad schedule gets settled soon. I go to RO on wed to decide on schedule and I hope start date. They say it takes a while for set up. Don't know what takes so long except for just the scheduling part. Those if you doing rads already, please share what is done prior to starting. I know they have to do markers (tattoos) on area.

    1 week Pfc for me, just a newbie. Looking so close in mirror everyday for hair like you Kim. I'm impatient. Very soft "fur" started but only if looking closely. Nice to hear you're getting regrowth Kim. Naive of me to think it was going to be like when guys shaved their heads for sports and then it just grew back like normal growth, within a couple of weeks they have normal hair color and texture. But I now realize that chemo damages the follicle, below the surface, as well as the melanin (color) in the follicle. Silly me, of course it's never simple with cancer. Everything I see on my head is white so maybe I'll be totally gray. I was probably over 50% before but hair dye is great and who knew?

    Enjoy your trip missy!

    Jackie-last week? Awesome!

    I'm still feeling sore and wobbly legs at times. Also some aching in my jaw and teeth? Anyone else with this? Some funny feeling in my L hand too which I didn't have during treatment, why now?  Staying positive (ugh I didn't really say that did I?!) and trying to keep my mind out of the "what if" gutter

  • RobinLK
    RobinLK Member Posts: 840
    edited April 2014

    Makes me want to hide her horse....

    Sorry Holli, that plain old sucks. I can't even begin to imagine how painful and frustrating it must be.

    Speaking of frustrated...that in no way compares to what Holli is dealing with. Did any of you realize we can no longer be marrow donors? I just found out today. I am bummed, have been on the registry since 1992. I am also hoping I don't need another neulasta shot. Nervous about that. 

    Jodi, I hope the medical housing people get back to you soon. 

    Kim, happy to see things are turning around. 

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    thinking if you ladies with Rad troubles  

    Jodi- any news on apartments?

    thanks Robin. The image of trying to hide her horse was a good one :0). 

    My girls are playing and the baby napping so Im trying to rest some. Just gotta get through this week Taxol SE. The fatigue/weakness is bad and I'm having the usual bone and joint pain. All pretty much the same as all the Taxol cycles. Depression too.  Hands burning though. I'm pretty sure it's the neuropathy rearing it's head. Burning in hands and numbness in fingers. Not too bad but noticible and annoying. 

    Those of you who shaved your head after your last chemo... Did you wait a few weeks then shave? Or shaved smooth right after the last one before you started letting the new stuff grow in?

    I have my rad consult this week....

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    Lisa- how cool!! You are 1 week PFC today!! Congrats. 

    Usually in day 6 or 7 I have jaw and teeth pain with the Taxol. Almost like severe sinus pressure but different. 

  • kjfromca
    kjfromca Member Posts: 283
    edited April 2014

    Holli - I like Robin's idea about the horse too.  I am so sorry about your mom.  You rant all you want.  Taxol is horrible on our muscles, hands and feet.  I hope that it is just as horrible to any cancer cells.  I am sending a hug your way.... You sound like a wonderful mom to your kids.  Your kids are blessed to have  you.  Hang in there.  I do not recommend shaving your head.  Those are precious baby hairs as far as I am concerned.... that's what I call mine anyway 

    Lisa - I think that all of our hair comes in white at first... doesn't mean that it will grow in gray.  I am thinking 80's Billy Idol cool... I think that it takes a long time for our bodies to stop hurting from the Taxol.  I will be 7 weeks PFC on Thursday and my legs still hurt.  Do you still have your port?  I had mine removed last week.  I had that stinking thinking mind in the gutter day, was fearful that I would have to do chemo again and need it.  I don't know if you are a christian, but I have a devotional titled "Your Best Life" by Joel Osteen.  He is talking about battles in the mind this week.... Great little devotional, even if you aren't a christian.    Nothing too intense, but motivating.

    Kim

  • chicopeach57
    chicopeach57 Member Posts: 166
    edited April 2014

    Mikesgirl, there are some people that I can take the humor from about all this and some that I can't. The difference is knowing where their heart is. Life is too short and tenuous to deal with insincerity.

    DJJ, congrats on ending chemo, you will be fine, trust the docs.

    Jodi, good luck on the housing and rads. My oldest DD lives in Houston, housing can be expensive!

    Holli, I would come help if I could. Your Mom should help if not for you but for the beautiful grandchildren.

    Michelle, I understand the anxiety about traveling, but it is usually a lot better than we fear.

    Yesterday it hit me, this is the last weekend of blurry vision, of the steroid roller coaster, the nasty rash on my arms, of the constipation then runs, of the nasty taste in my mouth, the numbness in fingers, toes and feet, the last weekend of all of it. I just started crying knowing I had reached the end of this awful phase. My poor boyfriend came in and looked at me with this look of "I want to help, but not sure what to do". I told him these are tears of relief, they are good ones, he hugged me for a while. I know he has to be feeling relieved too. Thursday we go to Savannah, hope my taste buds are a lot better because the food and drinks there are awesome!

    Ladies we are doing it, we are making it through one way or another! Thank you for being here.

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    Holli- so frustrating:( so sorry!!!  Grrr!

    Heard back from one place.  They have a apartment available. Get ready.....$3000 a month.  Includes everything- furniture, utilities and includes some cookware and bedding.  To stay in a hotel, it would be $300 cheaper, but I would be traveling back and forth every Monday and Friday.  This way we just stay and have a kitchen to cook and all.  Omg right!  So expensive.  My friend that just finished rads stayed at another place and it was $4000!  

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2014

    Kim, I like the billy idol image, wouldn't mind that...just something! Having my port removed 5/12. MO said she would keep it in for a year...unless I had an issue with it. Huh? Of course I have an issue with it! It feels like an alien being sticking out of my chest, you can easily feel the three little bumps on it and it gives me the creeps to touch it. I said I want it out and she said fine. I just feel like it would be a constant reminder of the cancer and thinking it's there if I need it. No! I don't want to think that way so out it comes, 3 weeks after ending chemo. It feels like it will be another milestone for me. Did you feel that way? Others feel the security of keeping their port I guess.

    Holli, good luck with the mom issue. Ugh you don't need this now! Any hair showing yet? Is that why your asking about shaving that fine stuff? It's weird isn't it? Nothing like anything I thought it would be. My rad consult is this week too.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2014

    Lisa, port removal was a relief for me...don't like the idea of keeping it "just in case", either. Feels like I would be dancing with recurrence....I hope your removal goes well!

    Holli, sorry you are having to deal with stress on top of stress. Let's put Mom's horse out to pasture!

    Jodi, have you considered an Extended Stay hotel? I'm not sure what their rates are, but they provide furnishings, etc. also.

    chico, enjoy your trip to Savannah!

    My hair color is coming in about the same as it went out! Mainly gray mixed with some brown. I am so trying to be patient...not working very well.

    Started reading the book, "Picking up the pieces",  Life after cancer. Really hits home. Written from testimonies of cancer patients/survivors. I have cut back my cable channels in order to force myself to change some of my old useless habits and to read more. Checking in to Livestrongs' free fitness program for cancer patients. It will start in July in Austin.

    Have a great week ladies and  kick the SE's to the curb!

     

     

     


     

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    extended stay is exactly the same price!  Can you believe!  $104 a night!  I am going to pray and put this up to God.  I have friends who have donated to my youcare site so just gotta have faith.   I believe it will work out.  Maybe I'll have to keep looking for a cheap hotel forn4 nights a week, but here is the kicker- then you pay taxes!  The taxes on the hotel are what is making it the same amount or more.  I'll figure it out.  Kimie I am praying for you too on this!!!

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    Jodi- my girlfriends sister had to travel to MDA. I remembered they stayed together in a hotel for her treatments. Here is what she said. I'm not familiar with the hotel of area. But I trust her judgment. 

    "Comfort suites next to reliant stadium. It was less expensive than others and very clean. Ask them for the medical rate.  It's only 10 min for the hospital. Take cash for parking."

  • kjfromca
    kjfromca Member Posts: 283
    edited April 2014

    Jodi - Will the AMC help at all with accommodations?  

    Today I received notice from my former insurance that they will not cover the Genetic testing.  I thought that they were covering it.  This was back in Oct. of 2013..... it's about $5,000.00 - Nothing like finding out now.  

    Keepthefaith -  Thanks for sharing the name of the book you are reading, I will look for it.  

    Keepthefaith & Lisa - Agree with both of you re the port removal.  My sentiments exactly.

    Kim

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    RHGSR- checking on it!  Problem is 5 day a week treatments:(. Comfort suites has a shuttle too!

  • DJJ
    DJJ Member Posts: 229
    edited April 2014

    Lisa, I was going to ask the same thing about the teeth.  Mine started aching last week.  As for your left hand, it could be neuropathy.  My brother-in-law (doctor) type talked to a neurologist who sent him an article on neuropathy that talks about "Coasting", basically neuropathy gets worse before it gets better and it could get worse for several months "WHAT??".  Then at my targeted therapy the nurse warned me that it could get worse before better.  Sigh.....nobody told me this before.  I have noticed my hands got a little worse.  Feet haven't....phew!

    Jodi, Holy crap!!! $3,000.  I'm sorry.  What a stressor.

    Holli, sorry about your mom.  I did shave my head 2 weeks after my last chemo.  The white stuff was coming in.  Now 5 weeks out I have dark hairs coming in.  Every morning it seems like there's more.  My eyelashes and eyebrows are coming in too.  Although my left eyebrow is coming in faster than my right...Come on!!!

    I meet with the Radiologist on Thursday!!

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    Kim- sorry about the genetic testing. That stinks. We had problems with it too. The first two times we tried our ins. Denied it. Said out of network. Waiting on the results of the 3rd try now. Used an in network lab This time. So we will see what happens. 

    Do y'all drink green tea? What kind? Hot or cold? I want to start making small changes. I've heard green tea is really good for you. But I'm clueless on it. 

    Also- I was drinking green smoothies before cancer. I used nutri system protein powder in them. I love the taste. But when I called to check on them, the nutritionist said that they didn't contain soy but while they used high grade USDA protein it isn't organic. Are y'all concerned about these things now? Should I still order them? 

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    Kim- check with your MO. They mentioned to me about patient assistance programs with the genetic testing. 

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    Holli- yes!  I am concerned about these things too.  I have heard about the book Anti Cancer Diet which is suppose to be great.  At least maybe some guidelines.  Also, juicing- trying to decided what kind if juicer to buy or break the bank and get the vitamin x blender.  Decisions.

    I did find an apartment that is $700 less a month!  It has one bath and the kitchen is run down, but still looking!  $2300 is better than $3000.  My uncle has offered one month rent, so trying to save up enough for July.  DH is very stressed as well! 

    More good news!  The local cancer foundation called me.  They are paying my house note in May!  The high school sorority in town donated money to the foundation and they said they wanted some of the money to go to me!  Now, I have taught or coached many many of the girls in that sorority.  I was so so touched and just made me miss them even more!  So blessed.  Tomorrow my second class ever is having a graduation party and they invited special teachers.  I got an invite!  I can't wait to see them.  Pretty awesome to still be remembered when you taught them at 5-6 years old.  I gotta wash my new wig and fix it lol!  I did buy a new shirt at Target today to wear;). 

  • oranje_mama
    oranje_mama Member Posts: 260
    edited April 2014

    Holli, sorry about your mom. I don't know how you are managing on your own.  You are strong!

    Kim, that is outrageous about the $3000 bill!  Can you appeal?  When I had the testing done, I was told that if my insurance required me to pay more than $300, they would not go ahead with the test without getting my permission and telling me what I would owe.  It's probably your old insurance company and new one fighting, with you caught in the middle. 

    I didn't shave my head (ever) and was left with very thin/fine oldman (or baby, take your pick) fuzz hair.  That's still there, and I think (although may be a figment of my imagination) I'm starting to see new growth (I'm 4wks PFC on Thursday).  I have a few white hairs but the other hairs are dark/normal color.  And not curly (so far).

    As if I don't see docs enough, tomorrow I'm going to my primary care doc for a physical, which is apparently a requirement before surgery.  

  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2014

    I'm also trying to drink more green tea. Go to a tea store, they are the new thing now or if no tea store near you then any green tea. The tea stores have all kinds of favors and combinations and often you can taste them. It's usually loose tea so you have to have a strainer which you can get there. Green tea alone is bitter I think so the flavored teas are great. Some better than others. Also will start to make a bunch and use for iced tea now that the summer is coming. I am sensitive to caffeine so usually go for,the decaf tea. Don't know if that's any better of worse than the caffeinated tea in terms of health. Will have to look it up.

    I have a vitamix. I use it a lot to make smoothies for either breakfast, or an evening snack instead of ice cream. Sometimes I'm on a vitamix roll and use it daily. I know some say juicing is better and some say smoothies (via vitamix or blender) is better. I think vitamix smoothies are easier and better because you use the whole fruit or veg and there is no waste or pulp left over like in juicing. A vitamix is just a high powered blender but worth it because it can blend any fruits or veggies easily, even carrots, beets, whole apples (seeds removed), pears, grapes, spinach, kale, broccoli...you get it. And it only needs about 1 minute of blending and it is smooth. Your kids would love it too and you can sneak in some healthy things they normally wouldn't eat. I make smoothies with yogurt, almond milk or reg milk and any fruit or veg I have in the frig or freezer. Freeze your over ripe bananas and then it's easy to pop into a smoothie from freezer. Can also blend in with protein powder if you use that or chia seeds or ground flax seeds and honey or agave syrup for extra sweetening. The cost is crazy though (it was a gift from my husband) and it sounds like a boat motor! Husbands may like it for the power factor, no wimpy blender here!

    I was eating healthy before BC but am trying to do so regularly now and make it a habit. 

  • kjfromca
    kjfromca Member Posts: 283
    edited April 2014

    I will call my former insurance company tomorrow re the decline of the genetic testing coverage.  I am almost positive that we were told that they would pay for it.  This was back in Oct.   My mom told me when I was diagnosed with bc and during the time that I was having to do a family history worksheet for the brca, that I had a different father than the man she was married to at the time of my birth.  This man who was my biological father died of cancer . She had no other info re how he died or any info re his family.  I was pretty much stuck with having to make a quick decision re this test, because if positive, my surgeon would have performed a double mx.  

    I read the Anti cancer book - I liked it.  I eat mainly a vegetable, fresh fruit diet now, and try to eat organic.  Green tea is supposed to be really good for you.  I need to incorporate this into my diet as well.  I drink a lot of tea, but it tends to be black ice tea.  I don't think there is anything good or bad in it.   A must is Vitamin D3, my doctors recommend it and I have a friend who is a 5 year bc survivor and was told by her MO to take it.

    Kim

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    Kim- did you just find out about your biological dad all together?  If so, that must have been a shock.  Vitamin D3- I'll definitely try to find that.

    How are the RADS going everyone?  Skin doing good or what is working to help?

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    out of my crazy mind and for your amusement......wouldn't it be nice IF

    Friends bought things for you that you need in the stages!  Like a registry for a shower lol!  You would get mastectomy gifts, chemo gifts and radiation gifts.  Just saw Cure Diva has these things divided by phases.  If I ever, God willing no!, have anyone go through this, I'll gift them something per stage.  I just looked and I wanted so much on the radiation part lol! But alas, cancer equals dirt poor am I right!?

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2014

    I hope you all get the genetic testing taken care of. I called Genomics myself to make sure my insurance would cover it , before they did it. I hate that insurance companies have so much control over our well-being.

    Green tea sounds like a great idea. I tried it last year, but couldn't get in the habit...will have to try again.

    jodi, my rads are going well so far. I just want to be done at this point. Using California Baby cream. RO said that or Miaderm-both have Calendula in them. CB is cheaper and found at Target. So far, pink, no fatigue. Yes, on the dirt poor! So broke I can't afford to pay attention!

    oranje, I hope your Dr appt goes well and you are cleared for surgery! One more step forward.


     

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    California baby cream!!  Good to know!!  And lol on paying attention;). 

  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    my girlfriend who had gone through chemo brought me a chemo care pack - biotene, eye mask, hard candies, a damn it doll (a stuffed doll I could take aggression a out on). I can't remember what else. 

    So just going over my path report from surgery this past nov. Since we are seeing an RO this week. Starting freaking out when I read that I had positive margins. My husband reminded me that we knew this already. Wow. Totally don't remember that part. He had recorded the follow up visit on his phone and sure enough. So positive lymph nodes and positive margins... 

  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    Holli- I am sure they are not positive anymore or they won't be after rads!! You know this!  My margins were > 5mm and they like for them to be 1mm it something like that.  They looked to see if I needed more surgery before chemo in Dec and said no they couldn't reason going back in.  I completely understand your worry, but the chemo and rads will get it all anyway!  Hugs Holli!  But you so got this anyway you look at it;)

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