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  • kathyrnn
    kathyrnn Member Posts: 393
    edited July 2012

    Inmate - Thank you, Thank you, THANK YOU! If I has seen something like that I would have just thought it was a rash or shingles again, and probably ignored it for awhile. That picture on here may be a lifesaver for someone on here someday. Keep fighting girl!



    Magicone- I'm so sorry for what you're going through. I echo eceryone's great suggestions. I have one more that might help. I did a search on Texas and found out that you have the CMPAS program. It's called the PCA (personal care attendant) program in MASS. While each state's program has different rules, there are basic similarities. Anyone with a chronic disability, who can qualify for Medicaid, can enroll in the program. Your needs are then evaluated (includes personal needs like bathing, and also daily needs like cooking and laundry) and you are assigned a number of hours you can hire a personal care attendant to assist you. In my state you can hire friends and family members to be caregivers. I recommend you talk to a Social Worker who is familiar with the program, because they are very good at finding ways to get you enrolled in Medicaid. Also, like all government programs, things move slowly, you want someone who will try and expidite the process for you. (Medicaid is the federal name of the program, but I don't know what your state name is for it. Every state has their own name for it. Up here it's called Mass Health)



    Here are some links to the CMPAS program in your state.



    http://www.dads.state.tx.us/services/faqs-fact/cmpas.html



    http://www.pascenter.org/home_and_community/TexasStateMedicaid.pdf



    http://www.dars.state.tx.us/services/personalattendants.shtml



    Luv - congrats Great Grandma (I will never call you that again, you are much to youthful to be called that.



    LM50- there's been no message from Hope yet.



    Borntosurvive - How tragic, I'm so sorry for your loss. (I remind myself daily to be grateful for my herniated disc. If not for that, I wouldn't have been forced into a physical by my PCP, and this beast caught early. *hangs head* Don't even ask how long I had put off my mammo. I'm so sorry your friend didn't get a chance)

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  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited July 2012
    Inmate - thanks for the picture.   I would never had thought that it would look like that.  I have a few bumps that looks similar and showed up last week - about 2 weeks after radiation ended.  I just thought it was still a reaction from rad's but will now watch it more closely if it doesn't go away.
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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited July 2012

    Luv......congrats Gramma!

    Magic......I agree with the others on getting a second opinion.  Sending good energy your way!

    Born.....love and strength to you as you attend your friends memorial.

    Beccad......Hi

    Where is Hope?

    One of my last conversations with Laurajane was during the first appearance of mets and she advised me to insist on getting a biopsy as hers were diagnosed as shingles too.  Seems like so long ago that we had that conversation, but my thanks goes to her for making me be my own advocate.  We all should remember that if it doesn't feel right, it probably isn't and if it is what's a little egg on your face?

    Also.....where is Bak?  have I missed a recent post from her?

    Have a great day ladies!  Love to you all! 

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited July 2012

    Catwhisperer.......rads can also give you a similar reaction.  Use the 2 week rule and if it doesn't go away, call the Dr.  A tip that helped me not freak out was to take a picture every couple of days and look at those to see if it has changed.  You can drive yourself batty looking at it every day and try to determine any change.  It is much easier to compare photos.

    Love...... 

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  • OBXK
    OBXK Member Posts: 791
    edited July 2012

    So glad the new ladies made it through the first round of chemo!



    Bernie - thanks for the funnies!

    Annie - loved the big baby!

    Inmate - thanks for posting the mets photos. Every time I have a blemish, near my scar line, I freak out. So sorry you are dealing with this. CFS!!!!!



    Magic - I hope you have found someone on the Stage IV board to compare notes with, and are able to get some help, so that you and your dear friend, can just spend time visiting.



    I read from my iPod, which makes it hard to remember, all the posts. I do wish everyone, exactly what you need.



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  • ksmatthews
    ksmatthews Member Posts: 812
    edited July 2012

    I had a ct scan and bone scan yesterday.  I just got the call from my Onc and all are clear!!!!

    Thank God!!!

    Praying for all you ladies, that haven't had such good news lately.  Stay strong and positive.

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited July 2012

    KS.....Yeah for all clear!

    Karen.....I was really hoping for adult onset acne.  

    Okeedokee, off to acquire one more scar for my quiver.

    Love to you all! 

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  • luvBngGma
    luvBngGma Member Posts: 73
    edited July 2012

    Ladies: so many thanks for your support and comments. Had 1st Taxotere on Tues, Neulasta today. So far, so good. Had steroids in IV on Tues, so they haven't worn off yet. Claritin has worked for me in past , for Neulasta. (one day, forgot & took Zyrtec instead, and had bone pain that night)! Haven't made that mistake again. :-)

    MO isn't concerned about the thyroid, said that even if it turns out to be something that needs attention, they wont do a biopsy, or treatment, till tx for BC is done. I am seeing endocrinologist, and asking them to consult with MO. I am putting it to the back of my mind, for now.

    No anti-nausea meds, other than Zofran in IV yesterday. I'm sure it's worn off my now, and I haven't had nausea. Surprised me, since I had 10 days of it on FEC.

    Good luck and tiny SE's to all having Tx this week.

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  • Spica16
    Spica16 Member Posts: 130
    edited July 2012

    Inmate, thank you for posting that pic. It gives us a good visual of what to look for. I sure would be fooled, thinking it was a heat rash or shingles. Damn, girl - looks like your incisions were healed and fading nicely. This dz is just so bizarre!

    MagicOne, our hearts all go out to you. fishinurse has really good advice, as well as LuvRVing. Usually cancer tx centers have social workers and financial counselors who can aid you with getting home help. Please look into them - you shouldn't have to deal with all this alone. And your best friend...what a blessing she is! 

    Take good care of yourself, and please get some support. It is just too hard to heal when you are so overwhelmed. 

    ~ Shar 

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  • bak94
    bak94 Member Posts: 1,846
    edited July 2012

    Omg Bernie-Too funny! It took me awhile even after I read the caption!

    MagicOne-I have no advice to offer, but I am sorry you are going through this. I know there was a woman on the boards with a similiar situation, does anybody remember her name? Like Luv said, if you post on the stage 4 boards you may find someone going through the same thing.

    Inmate-I am here! Your mets do look like a normal rash, do they hurt or itch? It just sucks that you have to deal with this again. Do you have to do chemo again?  My issues are so minimal right now compared to others. I am starting to finally get a bit of energy back. I have my 6 month bone scan in a couple of weeks and my annual pet/ct at the end of August and I am trying not to freak out! I have been dragging my feet on scheduling my hysterectomy, just not ready for another surgery, but I guess we do what we have to do! Have you heard from blondelawyer? I miss her too! Hopefully she is traveling and having fun!

    Hope-Thinking of you.

    To all you other wonderful women here-I hope you are all feeling well and enjoying life the best you can! Sometimes it is just so hard to deal with all this crap, but you gals make it so much more doable!

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  • beccad
    beccad Member Posts: 326
    edited July 2012

    hello Inmate,I was having trouble sending messages this a.m., I just gave up. I am doing better with the message part. However, it feels like that Xeloda is trying to take me out starting with my feet. They are so swollen so much I am wearing men's sizes 9 or 10 sandals with Velcro on the straps. and my baisance sucks!

    I will probablym keep using it as long as the liver numbers keep going down.

    beccad

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    Becca - are you getting calls from the Genentech (Xeloda) support RN? If not, sign up on Genentech's website as this service is free.

    http://www.xelodasupport.com/ or 1-877-987-2487

    The support line is staffed 24/7. They will send you a package of information, pill box, and a helpful booklet about Xeloda. I signed up and I'm getting calls every couple of weeks. If your feet are that bad, you should talk to your MO about whether or not the dose should be reduced. It is dangerous to have feet so swollen that your balance is affected. You surely don't want to fall and hurt yourself.  Perhaps your dose needs to be lowered a bit.

    Thanks for all the congrats - I got to the hospital to see the baby and he is just adorable! And Kathy, you are right, I'm way too young to be a great-grandma!!!

    Photo: 2012-07-18_14-02-47_973

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    I have a question for everyone.. have you all had a pet scan?

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    Lory - I have had 3 PET/CT scans.  The first was in May 2011, then October 2011, then May 2012.  I'll be on the every 3 month schedule for a while, my next one is scheduled for August 6.

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  • TifJ
    TifJ Member Posts: 1,568
    edited July 2012

    Congrats Luv- what a beautiful baby!! I don't think I will ever make it to great-grandma- I am 46, but my kids are only 10 and 6 (almost 7)!

    Lory- sorry, I haven't.

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  • beccad
    beccad Member Posts: 326
    edited July 2012

    lory, I have had 4 PET Scans since October 2011.



    luv, She (MO) only has me 1000 mg twice a day for 2 weeks then off for a week. I think she afraid to go. smaller since we are seeing a response on the liver with this dose,but I will ask her on Monday at my nest checkup.



    long gentle hugs to all of you.

    Becca

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  • browerl
    browerl Member Posts: 126
    edited July 2012

    Lory-No, I have not had a pet scan and the docs have not mentioned, one as of yet, but I am just getting started with this journey.

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited July 2012

    Okay Ladies, here's a more artistic approach to highlighting my skin mets.  The saw blades represent roughly the size of the area they excised.  I have an after picture too that I will share with only those who ask.

     

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2012

    Inmate I would like to see your after pictures.  Your bravery may help all of us some day.  Thank you.   

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2012

    Inmate I would like to see your after pictures.  Your bravery may help all of us some day.  Thank you.   

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited July 2012

    Cocker I sent it as a private message

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2012








                       

       
                        

         

                             

                                

               

                                     

                                        

                     

                                             

                                                

                           

    *LORD, THEY ARE
                            FINALLY TOGETHER* 

                            
                            Judy got married and had 8 children.
                            Her first husband, Ted, died of cancer.

                            She
                            married again, and she & Bob had 6 more children.
                            Bob was killed in a car accient, 12 years later.

    J                     Judy  remarried, and this time she & John had 5 more
                            children.
                            

                            Judy finally died, after having 19 children.

                          

    Standing
                            before her coffin, the preacher prayed for her.

                            He thanked the Lord for this very loving woman and
                            said,

                            "Lord, they are finally together."                   
                             
                                                  Ethel leaned over and quietly asked her best friend,
                            Margaret:
                            

                            "Do you think he means her first, second, or third
                            husband?"

                          Margaret replied, "I think he
                            means her legs,     Ethel..."

                           



                           

                           

                           

                           

                           

                           
                         
                       
                     



                     

                     

                     

                     
                   
                  
                  
                   
                                                                                                                                                                                 
                   
                  
                 
                 
                
               
               
              
             
             
            
           
           
          
         
         
        
       
       
      
     
     

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2012

    Inmate not sure what is happening to the thread as it won't let me answer. Will do it as soon as they let me.   

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited July 2012

    cocker did you post that last joke?

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2012

    Yes I did Inmate but the thread was going funny and it came out like that.  So I guess it doesn't make sense really.   

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  • GuyGirl
    GuyGirl Member Posts: 182
    edited July 2012

    Just wanted to thank everyone for their prayers.  My sister's Biopsy results were good.    She has a papillary lesion that will need to be removed by surgery but at least it was not the Big "C".  So thankful that all is well.  What a relief.  Saturday our minor league baseball team will be celebrating Breast Cancer Awareness night and I will be singing the National Anthem.  Anyone know how I can shed ten pounds by then????  LOL :) 

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited July 2012

    ((Inmate))  Thank you for posting that photo.

    Lory: I have had a few PET scans.  Had an axillary lymph node post chemo that we were watching.  It went away after about a year.  Last fall had some stubborn hip pain and had a Pet scan to look at it.  Results were degenerative disease.  Onc offered another PET scan this spring...I declined because I was feeling good. 

    Magicone:The advise of getting to a BIG cancer center/university hospital is good.  I woke up thinking about your situation this morning.  Just wondering if you would be a candidate for Avastin.  That drug helps to stop blood vessel growth...not sure if this applies to your case but it is a thought...

    Awwwww LuvR.  Don't ya just love new baby?  Congrats to you and your family.

    Feeling very grateful this morning.  After months of no rain, we finally got some during the night. Not sure it will make a difference for our farmers but and it won't help my scorched lawn but Hopefully My DH and his allergies will get some relief. 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    Ellen - Spanx???  LOL!  Don't worry, really.  If you can sing the National Anthem, that is a beautiful thing and no one will be noticing your figure.  And I can only imagine the relief you all felt when your sister's biopsy showed something other than cancer!

    Beccad - my only other suggestion would be to try one week on, one week off.  Some people have less side effects with that protocol. 

    Inmate - you are one brave warrior!  Thanks for posting the pictures. 

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  • Tookybum
    Tookybum Member Posts: 38
    edited July 2012

    Inmate; thanks for posting the pictures.  It is something I will watch for in the future.  Hope you don't mind me being honest but the thing the struck me is I have never seen a mastectomy.  It took my breath away.  Thank you so much for being so open.  And thank you everybody for the support and love.  My family wants me to join a support group but I tell them I already have and they are available 24/7 and are more supportive than you can believe.  Just PMS-ing so all mushy and stuff but the sentiment is there!

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  • Tookybum
    Tookybum Member Posts: 38
    edited July 2012

    <<Luv>; Congrats on the new grandbaby! Adorable.

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