Winter 2015-16 RADS

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  • El_Tigre
    El_Tigre Member Posts: 520
    edited March 2016

    Kate -I am formulating more Q's for mine I'll add that to my list. At least we can get an idea of what to take and what not to take. I'm going to ask about melatonin as well. It is supposed to help cancer patients but like Tumeric there's a hormonal connection there too.

  • KateB79
    KateB79 Member Posts: 747
    edited March 2016

    El Tigre, I take melatonin nightly (2.5 mg), with my MO's (and RO's) blessing. It's supposed to help with Tamoxifen metabolism or some such thing, but I take it because it really helped me when I was having wretched night sweats. Melatonin is good stuff.

  • JerseyGirl22
    JerseyGirl22 Member Posts: 342
    edited March 2016

    Hi everyone.... with regard to Turmeric, when I saw the Integrative Onc at MD Anderson, he said he wants me taking Turmeric/Curcumin... I'm supposed to begin Tamoxifen and he had no problem with me taking the Turmeric/Curcumin with it...I do ground turmeric root in all of my smoothies, and I take Curcumin tablets that contain pepper, along with my Omega 3, since it usually needs a fat to digest with... That's just what the docs say in my neck of the woods...

  • KateB79
    KateB79 Member Posts: 747
    edited March 2016

    For what it's worth, my MO thinks I'm nuts for taking the Turkey Tail, but she deals with it. She has no thoughts about turmeric, beyond "you are spending lots of money on supplements."

    Yeah, but it beats spending lots of money on a recurrence, doesn't it? ;)

  • El_Tigre
    El_Tigre Member Posts: 520
    edited March 2016

    Kate - definitely does beat the $ on occurrence. Mushroom anything is supposed to be great for us.

    I know right? why metals in it? It's supposed to help relieve my joint pain but..... yeah. It is also supposed to be a detox from rads.

    Zinc to help my immune system after chemo and radiation.

    Not completely sold on the naturopath. What usually happens is we get recommendations then analyze the hell out of them :)

    Honestly I'm the type of person where I like to keep it simple and take nothing


  • Peabrain
    Peabrain Member Posts: 268
    edited March 2016

    Kate - I got a surprise open sore that came up a couple days after rads stopped in an area that I didn't even have on the radar. So I stayed with the aquaphor on the worst spots for a week after rads and Miaderm everywhere else. Now, just Miaderm twice a day.


  • El_Tigre
    El_Tigre Member Posts: 520
    edited March 2016

    hi,

    Is anyone experiencing joint pain?

  • Peabrain
    Peabrain Member Posts: 268
    edited March 2016

    YES! I am 48 going on 93!

    And this week my left wrist and thumb hardly work, like I sprained it? Only there's no swelling. I don't know what's up with that.

    My MO told me that estrogen is a lube for joints and that with the chemo, we killed off our estrogen production and very suddenly degreased our joints. I am a little unclear on the long term prognosis since none of us can take hormone replacements

    I also understand that we are at much higher risk for osteoporosis.

    What do you all know?

  • KateB79
    KateB79 Member Posts: 747
    edited March 2016

    Joint pain. Yes. Sometimes. Especially in my hips. Fish oil helps, as does exercise (it's paradoxical that way).

    Herceptin makes it worse, at least for me, for a few days after each infusion.

    I'm 36 going on 84.

  • VickiRides
    VickiRides Member Posts: 211
    edited March 2016

    Yes on the joint pain, mostly in my hips but knees and even my right elbow feel it. Getting out of bed in the morning is awful.

  • El_Tigre
    El_Tigre Member Posts: 520
    edited March 2016

    anyone have a good solution to try for joint pain?

  • marijen
    marijen Member Posts: 3,731
    edited March 2016

    A body transplant?

    SillyHeart

  • mdoc524
    mdoc524 Member Posts: 336
    edited March 2016

    Welcome Welcome Findaway – so sorry you are here but so glad you found this awesome group! Good luck and let us know how you are doing or if you need anything

    KarenR – Woot to you – finally #2 in the books – hope all goes smooth now for you with no more machine issues

    Duzy – hope Boost Setup went well .. had Boost #1 today and was so fast!! St Patty's Day here we come! My RO even joked that she would have Irish Beer for me on my last day! How's your skin – My Collarbone area finally opened up as expected but no more zaps to that area so hopefully it will heal up fast!

    Adarkadapted – WooHoo for you as you head into Boosts for your last week! Time sure did fly when we weren't having fun – who knew! Definitely went much faster than chemo!!

    KateB – do I see an updated profile pic without a chemo hat – you are beautiful and love the hair coming in!! As far as post rads lotion/creams – my RO advised to continue same regimen for 2 weeks post rads and then use whatever lotion/cream you want – curious what everyone else is doing too?

    El Tigre – Total Yes on the Join Pain – I agree with Peabrain on chemopause causing a lot of it and I am 46 going on 90 especially with my white fluffy hair LOL! Joint Pain can also be caused by Neuropathy from chemo too! I don't have a solution yet! Mine is mainly in my hips, neck and shoulders! My MO is having my Right Hip scanned as that is getting worse and not better! Also I am a complete novice on homeopathic regimens – thanks for sharing! Something I am meaning to maybe give a try and would love all of your advice to a person who before cancer took Allergy meds and occasional Tylenol/Ibuprofen when needed! I had anaphylactic shock over 15 years ago so whenever I get a new med it takes forever for me to actually take it – haha – I know "issues"…

    HappyHammer – thanks for sharing the link on BPA .. scary stuff & would have never thought!! I don't use much canned goods but I do eat those Smart Ones Microwave meals at work (easy) ..

    Marijen – glad things are going better for you!! Hope it stays that way..

    I just got some awesome news .. so I need to have 2 additional surgeries - ovary removal and finish reconstruction (implants in - tissue expanders out).. I am going back to work full time on April 4th and just did not want to go back out again 2x for these surgeries & did not want to go under anesthesia 2x. My OBGYN office and Plastic Surgeon's office both agreed to see if they could do them together and got the call - all set for June 7th!!Both of the Surgery schedulers told me at first they thought no way but so glad I asked - never hurts to ask! I am elated - I know it won't be too easy of recovery for 1st few days but who cares - so glad not going under anesthesia 2x .. I really never thought it would be possible with how busy these Dr's are .. Whew - thanks for listening!!

    Have a great night everyone!

    Mary

  • Brightsocks
    Brightsocks Member Posts: 159
    edited March 2016

    Finished!

    Not sure what to say or how I feel I wrote out a card for the very helpful nurse who was in a different department today. I really hopped I was going to see her to thank her but not this trip. In 6 weeks when I go back I will look for her. While reading over the card to a friend I started to cry but that has been it for tears. I did get to ring the bell after I asked the tech boys. One is all about the tech and numbers while the other is more about the person. The one guy left the room so I just had to ask about the bell. Did not want to miss my moment. A slight ring sound come out past the lead door in room 3 today. For 93.3 will not be returning....

  • Brightsocks
    Brightsocks Member Posts: 159
    edited March 2016


    KateB79- I was give the advice to hold off until after treatments with the probiotic due to all the changes that are going on in your body during radiation. In 6 weeks I will be back taking them to help support my system. I gave my team a list of all of the items my naturalpath gave me and they had me hold off on all of them mostly. They also went item by item explaining the reason behind not taking the medications.

  • Brimton
    Brimton Member Posts: 87
    edited March 2016
    Hi everyone Met with RO today. After reviewing my chart she added two more boosts. I THINK it was because of the margin size. But now I won't be done until 3/16. Did anyone else get boosts added and Why? I will ask in am but I'm pondering it tonight. she also gave me silvadeen for my underarm and under boob. My sister says it looks like a large blister that has popped. Ugh Does the affects continue for a week after rads?
  • Brimton
    Brimton Member Posts: 87
    edited March 2016
    I'm a little down. I had my head wrapped around Monday. I know it's just two more days but ...
  • mdoc524
    mdoc524 Member Posts: 336
    edited March 2016

    WooHoo Happy dance and High Fives Brightsocks - congrats on finishing! Question - did your RO ever say anything specific on why holding off Probiotic - I have been taking Renew Life Ultimate Flora 50 Billion since finishing chemo and my RO never to stop?? She did say No on multi-vitamins but never said anything on Probiotics being an issue with Rads??

    Brimton - I would be down too if my RO added days especially this close to the end - Hugs to you! We all have our end date in our heads and calendars from the day we start and I don't think they get that! I hope you get some answers!!

  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited March 2016

    @Brimton I hear you. I had three whole breast added, and it was devastating! But I'm done now, and you will be soon. Hang in there! It's worth it if it means no recurrence.

    @mdoc that is great news on the surgeries!

  • Andraxo
    Andraxo Member Posts: 410
    edited March 2016

    So excited to see more of you fabulous women done with rads this week! HOORAY!!!!

    Lots of joint pain here - especially hips and knees. It is very discouraging to me. :( Today was the worst it has been in 10 days. WTF? Shouldn't I be getting better not worse being 6 weeks after last chemo? I feel old. A body transplant sounds great about now Marijen!

    Today I saw the RO, as I do every Thursday. I asked about why my redness/rad field starts halfway between my sternum and my right nipple (right side is not involved, cancer was left and so lateral it was practically in my axilla/armpit). He said it is to get the best angle to avoid my heart....which was tricky. OK. Just keep avoiding my heart...I'll take the burn anywhere to avoid my heart.

    Mary - that is great news to have both surgeries done at the same time under anesthesia! I'd want the same.

    My head henna is fading but I may get it done again ext week. Lots of translucent fuzz coming in but it's not consistent/even so I will keep it bizzed at a few millimeters until the front area shows some signs of life. Fingers crossed that happens soon!

    - xo

  • MissV123
    MissV123 Member Posts: 79
    edited March 2016

    Welcome Finaway ! I hope you get as much from this place as I did....these women are wonderful and full of helpful information...no questions to big or small.....

    Congrats Brightsocks...so happy you are done....and Brimton Im sorry for the two more days of this for you.....I know we all mark our calendars on paper and in our heads....but it will be over soon.

    Kate, I agree, I was so sick of the Aquaphor....I ordered another tube of Miaderm because it really helps me heal so much faster...and no wet tee shirts .and sloppy towels ( had to add oxiclean) to the laundry to get it out of the shirts and towels...just messy stuff and the Miaderm has so many good healing qualities in it....for me it is much better using 3 times a day and what a difference...

    Marijen, Im ready for the body transplant ! I laughed out loud when I read it....

    So as JerseyGirl2 says "Warrior On" this has been stuck in my head from the first time I read it...the song "I am the Warrior" came on the radio the other day in my car and I sang it at the top of my lungs...

    Sleep tight my friends.......the weekend is coming......


  • Kimmer33
    Kimmer33 Member Posts: 386
    edited March 2016

    kate, i have been experiencing itching and a rash near my collarbone since my last rad on monday. It isnt bad, not complaining, but filled my scripts of flamizine and hydrocortizone so i dont have to suffer. Fatigue has pretty much left the building and am feeling stronger every morning.

    Jersey girl, i too am taking turmeric daily in my smoothie with black pepper and olive oil, but since reading on this board (i think) that it could interfere with tamox i am a little concerned. I see my onc next week for discharge and will ask her what she thinks.

    Thanks for the compliment MissV.

    What's wrong with antioxidants during/post rads???


  • DiDel
    DiDel Member Posts: 1,329
    edited March 2016

    big congrats to everyone that finished up in the last week!!!

    I have been so miserable between the itch and this pain in my back shooting down my right arm that my RO swears is not due to rads. Also have been having lots of palpitations but again RO says not related . I had ekg done today it was normal, he gave me a rx to try to see if palpitations go away. I hope they're really annoying .

    Tomorrow is my last Friday ! !! I've never looked forward to St Patrick's day so much!!

    Monday I was in such a bad mood from the pain and itch. They finally gave me some Xeroform which is amazing and why wouldn't you give it to everyone at the beginning of treatment . But really took the itch away and is slathered with petroleum jelly. Just the world of difference .

    Mdoc glad you got your surgery all worked out. Getting TE's out and implants in is like taking your heels off after a long day and putting on slippers. It's easy breezy surgery and so much of a relief recovery was not painful . Now your ooph is most likely another story.

    I've been so tired I feel like I have more to say but it's bedtime.

    Good night all..happy end of week!!

    Di

  • Duzy
    Duzy Member Posts: 134
    edited March 2016

    Doing the happy dance I am done with whole area and move on to 5 boosts tomorrow. Mary glad to hear they go much quicker. I hope that area holds up. I am with you on the pain and skin - except mine is my armpit. I have all of these white blisters and one area starting to peel so any day I am going to loose all of the skin. Hopefully this is the only area. I started getting these deep pains tonight and I think it is when anything rubs against that area. They said after I finish radiation they will give me something different for my skin they just did not tell me what. Also congrats on the surgeries. That will be nice to have it all done at once.

    DiDel - I am with you on the pain and itch. My RO said to just keep using the Aquaphor and Hydrocortisone until treatment is complete then they will give me something else. Yeah for boost so the rest of the area can start to heal. The finish line is in sight.

    Adarkadapted - I see you are finishing next week with a few of us. Everyone here says the boost is much quicker and the rest of our skin can start to heal.

    Brimton - So sorry they added the extra treatments. We all know our end date and it is so hard to hear something different when you are so close to the finish line. You can do it though You will still finish one day earlier than Mary and myself. We will all get through this together.

    Brightsocks - YEAH for being done. Take some time for yourself and rest up.

    Welcome to everyone just starting this week. This is a great group of people to lean on, learn from and just get through all together.

    Have a good night everyone and a great Friday. Not sure about everyone else but in Michigan we have had the best weather this past week and it is suppose to continue through next week. Went for a bike ride tonight after work which felt great.

  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    I don't know why they can't offer massage with radiation. Geez, let us fry you and stiffen you and stick a little cream on it

  • Moondust
    Moondust Member Posts: 510
    edited March 2016

    Duzy, congrats on getting done with whole breast rads!! Woohoo!! I am halfway done with them.

    One more day, then we all get a two day break! I'm ready.

  • Brightsocks
    Brightsocks Member Posts: 159
    edited March 2016

    I talked to the cancer pharmacist who felt by adding a Probiotics it will change your gut floria during treatment.

    Another advice I was give before BC is when using a probiotic is to try different brands as well to mix up the different probiotics introduced to your system.

  • Peabrain
    Peabrain Member Posts: 268
    edited March 2016

    Here's my understanding of the prohibition on supplements.

    Most of the reason they don't want us taking supplements and vitamins is because those interfere with the radiation. The whole idea of radiation is to kill off the cells. The normal ones bounce back better than the cancer ones. So they zap us until the cancer ones die and the other ones are within a thread of their lives. If we take supplements that keep all those cells alive and healthier, it messes up the whole ugly process.

    Other supplements and drugsare off limits because they thin your blood. That has been a no-no since chemo because our blood is already thinner from the treatments.

  • El_Tigre
    El_Tigre Member Posts: 520
    edited March 2016

    peabrain - makes sense

  • marijen
    marijen Member Posts: 3,731
    edited March 2016

    I take them anyways, Vit D, magnesium, Vit K, probiotic, calcium, zinc

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