Starting Chemo, November 2013 Group

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  • ellenkc
    ellenkc Member Posts: 173
    edited May 2014

    Smlvr, Quirky, Amazon: My husband had both bone mets and extensive arthritis. A couple of docs told him that the difference would be that arthritis pain comes and goes (often increases during the day) while the pain from mets would be continuous. Hopefully that is a good sign for the pain you are experiencing, if it comes and goes.

    On hair -- was tough to decide to do this after focusing so much on growing hair, but I snipped little bits of hair over my ears today.It's coming back wavy, and I was looking like the little Dutch boy with wings of hair sticking straight out over each ear.  -- Ellen

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited May 2014

    You all are just so great. I can't imagine doing any of this without you.  My surgeon is seeing me tomorrow at 8:30.  The general feeling is its too soon after treatment to be the M word but I'm still glad we are checking it out.  

  • BigT16
    BigT16 Member Posts: 100
    edited May 2014

    I was told Herceptin every 3weeks was a breeze.  I had my 3rd treatment yesterday. I'll tell you for 2 weeks after infusion ALL my joints hurt. A week before I have to go back, I'm just starting to be able to move again without pain.   I'm suppose to get on an airplane on Sunday.  This is going to be quite an adventure. 

    Quirky-Good luck at the surgeon's office.

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited May 2014

    Good luck BigT!!  My surgeon said my tumor was not aggressive enough to have caused  a rib met.  She didn't know the source of the rib pain but suspected its muscular.  Put me on alleve for the next two weeks and said to contact her if the pain is still there when finished.  If so, she and my beloved MO will consult to discuss scans.  So I'm very hopeful and am going to try not to worry during these next two weeks.  Plus, I plan to enjoy the pain relief as I still have lots of post-chemo and tamoxifen aches and pains.

  • Phebe38
    Phebe38 Member Posts: 197
    edited May 2014

    BigT I have herceptin every three weeks but I don't have aches and pains everyone is different in each treatment but on the other hand everyone was telling me that radiation is a breeze. I have some burns where I got radiated. It's very painful after ten days post radiation. I'm being treated by a wound specialist. Twice a day in the morning and night I change my dressing.i'm using viscopaste. It's helping tremendously. Thank God for specialists. All of them, everyone has a special job to do

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited May 2014

    Phebe, I'm sorry to hear you've had such complications.  I agree about the specialists.  Each one is so important.  Hope you heal quickly!

  • Cannoli1
    Cannoli1 Member Posts: 49
    edited May 2014

    lisa137,

    I finished chemo on 5/2/2014, I am having my port removed Weds (5/28). I had my CT Simulation for radiation about a week and a half ago, but my breast surgeon said I should have my port removed before I start radiation. I want to ask you, was your port on the same side as the breast that will be radiated? And, how many days after your port removal did you begin radiation? My breast surgeon recommended about a week.

  • Phebe38
    Phebe38 Member Posts: 197
    edited May 2014

    Cannol: the port is on the opposite where you're radiated. I still have my port on, I will keep it there till December 15. That's when I finish herceptin. Quickygirl thanks for being concerned but I will make it through this , just like I made it for chemo

  • lisa137
    lisa137 Member Posts: 569
    edited May 2014

    Cannoli1 -- Yes, my port was on the opposite side of my radiation. I had my port removed on a Tuesday and was supposed to start rads the SAME day, but got rescheduled for the next day. I was a little concerned that there would be an issue with raising my right arm into position for radiation--because my port was placed pretty high up so I was worried it would be sore, but there was no issue.  It *was* a little sore, but raising my arm didn't bother it. 

    Neither my surgeon nor my RO seemed to think it mattered when I got my port removed so far as radiation was concerned. I'm sure it would be a different story if the port was on the side that was being radiated, though.

    Edited to add: I did NOT have reconstruction done, so whether that makes a difference in the advice they are giving you or not, I do not know.

  • Cannoli1
    Cannoli1 Member Posts: 49
    edited May 2014

    lisa137,

    I see. My port is on the same side where I will be radiated. This is probably why my breast surgeon wants to remove before radiation.

  • Phebe38
    Phebe38 Member Posts: 197
    edited May 2014

    I'm amazed how strong some of you are. Having your port removed before radiation then you have to put your arms up is uncomfortable during radiation wow! 

  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited May 2014

    Here is an updated pic of my hair growth after 9 weeks PFC. Still patchy, but slowly filling in.

    image

    There is some progress compared to the pic a week ago.  :-)

  • lisa137
    lisa137 Member Posts: 569
    edited May 2014

    Phebe, I really did worry about that; that starting rads the day after my port removal would hurt, but it didn't. Actually, even though it was quite sore the day it was removed, almost all the soreness was gone by the next day anyway. Nothing at all like when it was put in.

    Amazon, my hair looks a lot like yours; maybe just a tiny bit shorter. I'm not sure if I'm happy that the darker areas started coming in, or not. When it started growing (while I was still on taxotere/cytoxan) it was all white and I planned that if it stayed that way I was going to dye it lime green....but now some of it is really dark, so I guess I won't do that.

  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited May 2014

    lisa: Lime green hair- sounds like a great idea to reinvent oneself!

  • Phebe38
    Phebe38 Member Posts: 197
    edited May 2014

    Lisa? That's great that it's not hurting! I find that my port is kinda uncomfortable. I think after a while you're immune to what we go there. I'm going to area therapist to show me how to exercise both of my arms I'm so sensitive both of my arms. The nerves where I got operated feel like electric shocks. I want to be able to move them freely 

  • Phebe38
    Phebe38 Member Posts: 197
    edited May 2014

    lime green hair ok. My hair came out dark dark black. It's still very short like Amazon

  • audra67
    audra67 Member Posts: 521
    edited May 2014

    Oh goodness!  I haven't read this in awhile as I'm doing the facebook thing....but I also have rib pain !!!!  It seems to come and go and the thing I think it's caused by is that I'm wearing sports bras that are tight!  I didn't wear anything through all recovery and chemo and now these...that's all I can think of because it got worse after PT and she moves skin and muscles around there and I didn't have radiation...I just had CT scans and they had same things as before nothing on rib area....or maybe it's from surgery?  I am thinking it's the tight bras and not used to it...

    I bought several different kinds of bras and the comfiest that didn't hurt under my armpit area is a cheap-o champion brand jog bra from Target...so I wear those daily, but they are tight...

  • audra67
    audra67 Member Posts: 521
    edited May 2014


    LOVE your hair Amazon- Here is mine 18.5 weeks and using gel to get it to stand up and look longer...it's growing in kewpie doll/faux hawk by itself....

    image

     

  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited May 2014

    Audra: Great hair! Did yours come back dark or you already coloured it? If yes, did you use a special more natural hair product?

    My rib pain came after my last chemo and stayed on and off ever since, so I wonder if that's some sort of nerve damage/ neuropathy or with the rads everything started to act up again. 

    It's sure frustrating as heck!!!

  • audra67
    audra67 Member Posts: 521
    edited May 2014


    My hair was always dark and I haven't colored it- you can't see that well in pic. but I have some grey too..:(  I will get it colored when it gets a little longer I think.. I am using AVEDA hair products- natural...and they smell amazing!!

    I had lots of pain during chemo too, heart, rib area, liver area...my MO said that was normal chemo thing...

    I am going to try not as tight bras...I will have to buy xl!!!!  these are large but very elastic and tight, made for working out...not every day I'm sure...Hoping yours gets better!

     

  • lisa137
    lisa137 Member Posts: 569
    edited May 2014

    I don't have rib pain (not yet anyway,) and I don't know where I read this, but I think I read someplace that rib pain is kind of common after mastectomies.

  • Phebe38
    Phebe38 Member Posts: 197
    edited May 2014

    image

    well this is my hair look like after three months of chemo. Audra your hair looks fantastic. I wear hats and sometimes human wig when I go out. When I'm at home I don't wear anything. Audra? For me I don't wear a bra yet, I have burns where I was radiated. yeah could be because of your tight bras thats why it's acting out. The nerves where I had surgery sometimes act out like electric current. I ask my radiologist and he said that's from the mastectomy surgery. He told me to keep exercising. iI'm also to see a therapist to help with the movements on both arms. My port is sensitive so need to continue with movement exercise. Nice to hear from you it's kind of slow here lately. I love reading how you ladies are doing

  • lisa137
    lisa137 Member Posts: 569
    edited May 2014

    I may have to start going without a hat or scarf in the very near future just because it's too danged HOT to wear anything on my head here now. Plus, I went out on my front porch with no hat a little while ago to water my porch plants, and the breeze across my fuzzy head felt SO good!

  • Phebe38
    Phebe38 Member Posts: 197
    edited May 2014

    yeah the weather makes a difference. Here in the North it's still kinda cool so I'm ok with a hat. After I'm healed where they radiated I always have to put sunscreen and cover it. That's what radiation therapist said. That's very important

  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited May 2014

    Finished rads today!

    Yaaaaaay!

    It's done!

    It's over!

    El final!

    La fine!

    Basta!

    Ende!

    La fin!

    Koniec!

    No more!

    I am not going to hear that lazy whine of the radiation machine any more!

    Overall I am happy, but exhausted and slightly numb.

    I guess the recovery process has to take place now.

    I said good bye to the RT staff at my rads unit with a thank you card and box of pasties. (Even got a hug from one of the therapists!)

    Now I am resting at home. I caught a nasty cold from my son, so I have to take care of it too.

    I imediatelly started to take supplements and vitamins to boost my recovery as my RO said it was OK.

    Here is a pic of the skin after 25 rads of 50 Gy's to the chest, axilla and supraclavicular areas, 4 angles and bolus each time.

    Used emu oil and calendula cream. Yesterday I even introduced onion and cabbage juice compresses.

    I was taking 6g of Curcumin C3 complex with Bioperine and 30g of L- glutamine daily plus a one multivitamin. I will continue with this regime for another 2 weeks or until healed.

    image

  • Phebe38
    Phebe38 Member Posts: 197
    edited May 2014

    amazon? I'm so happy for you! It's been two weeks since I finished my rads. Take care of yourself!

  • Bec65
    Bec65 Member Posts: 312
    edited May 2014

    Amazon!  Congratulations!!!!!!!  Your skin looks great, I must say!

  • audra67
    audra67 Member Posts: 521
    edited May 2014


    Phebe-

     

    LOVE your hair!  It looks like its coming in all over!  Nice and dark too!  Yay!

    Amazon-

    Congratulations!  Your skin does look good- sooooooo happy for you!  NOW you are on the road to feeling good again!  Hope you get over your cold fast!

     

    I just had to go to regular DR for first time since all of this...I have a sinus infection and got antibiotics and headed home, in and out in less than an hour...it felt normal. :)

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited May 2014

    So much happy news today!  

    I know we talked about this but can't recall the consensus.  I'm ER+ and therefore should avoid soy.  Is that right?

  • lisa137
    lisa137 Member Posts: 569
    edited May 2014

    Yep, Quirky. I've read that a little here and there is okay, but it's probably best to avoid it as much as possible.

    Personally I'm going to avoid the heck out of it just because I've always had *extremely* painful periods. Then I was given a tip that if I'd drink just a little -- like half a cup-- of soy milk every day I wouldn't have menstrual cramps. So I tried it, and it got rid of my PMS, got rid of my menstrual cramps, and made my periods lighter and shorter. In fact, it worked so well that it scared me a little because my mom had had DCIS and was  told to avoid soy thereafter, so I stopped using it for the most part years ago. That's some powerful stuff.

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