TRIPLE POSITIVE GROUP

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  • deni1661
    deni1661 Member Posts: 463
    edited September 2017
    Shelabela- glad to hear your first proton rads went well. I wish you good results and no problems with the rest

    Moodyblues- you have a great attitude looking at this break as time to get stronger, hang in there!







  • deni1661
    deni1661 Member Posts: 463
    edited September 2017

    Hapb, I've been following Chris Wark for awhile, his story is inspirational and the information he shares is always good. I haven't had time to watch his latest modules but I have saved all his emails with the links. I too believe spirituality is a helpful tool toward achieving balance, serenity and healing. I'm willing to try anything and everything to keep recurrence away. Thanks for always sharing helpful tips and great resources.
  • deni1661
    deni1661 Member Posts: 463
    edited September 2017

    Coach Vicky, I went to Cancer Treatment Centers of America in Zion, IL for my 2nd opinion. I knew this was the right place for me within minutes of meeting my MO. CTCA has a location in Atlanta which I think is close to you. CTCA is outside of my network but they adjust fees to in network. They pay for mileage and offer flights/hotels at discounted rates. More importantly the care far exceeds my expectations in every area. All of my doctors, nurses, technicians- everyone at CTCA provided the most wonderful care. They seem to offer more forward thinking treatment options than those in my hometown. Their philosophy is based on integrated care which I appreciate because it encourages wellness beyond just traditional cancer drugs.

    I highly recommend CTCA. Best of luck with finding a good fit
  • moodyblues
    moodyblues Member Posts: 470
    edited September 2017

    Thank you Deni, I feel pretty good right now.  Smile 

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    deny, posey, thank you for sharing the studies. I was trying to read and understand but it is too complicated for me but the conclusion itself is frightening. Here we arr those on weekly low doses of Taxol and what does it mean for us? I want to show it to my oncologist.

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    A short update , I saw a team of two psychiatrists from the mobile unit yesterday and after a few hours an psychiatrist from the cancer rehab at my clinic. The mobile team, that is a more stand-by emergency unit, prescribed anxiety medication until there will be a diagnosis but the psychiatrist lady at the clinic talked to me together with my therapist and said: I see it all the day, you should try a mild ant-depressive, you will be feeling better in a few days, we have to put you back on your feet so you can relax and go on with your treatment. This medication will also be good for you when you later will start on Tamoxifen. The anxiety med the team prescribed you can take it so far but it is working through dopamin and is nothing but alcohol in the pill form, so I can eventually drop those. Here I am, day 1 after 1/2 pill yesterday, pretty tired and drowsy, slept a lot, but I guess it it too early to tell. It really helped that those of your guys who are on anti-depressives shared it with me. I do not feel like a failure now, I know it is hard on many people, not only on me. I know where are two possible ways to go when it comes to the mental condition: either I choose to believe that they get this bc out of me and subdued me to all the treatment that prevents it from coming back or if I sit and dread that nothing worked. The last option is not living everybody will agree with me. It is just I need to stick to the option one and do not let myself fall down the rabbit hole all over again, which is hard. Any suggestions? What do you tell yourself every day when any fear crosses your mind? Any strategies to share?

  • shelabela
    shelabela Member Posts: 584
    edited September 2017

    Meg, that is why I wanted to use it. I burn easy and didn't want to get fried.

    To all you other lovely ladies have a beautiful day! 🤗


  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    Another question: what about dates? Are they ok to eat? They contain a lot of sugar but other than that is there any contraindications?

    Cherry

  • meg2016
    meg2016 Member Posts: 287
    edited September 2017

    Soxfan75 the original intent for Mepitel was for skin that had already been damaged- burns, etc and needed to heal. So I definitely think it could be used now. Its like a large, thin bandage with one side that is moist. My radiation onc said they prescribe it for people who are seeing lots of skin damage, they just don't use it as a preventative. Mostly because it is expensive and insurance won't (yet) cover it as a preventative. I saw studies from New Zealand on it being used as a preventative so I tried it. I bought it myself (its on Amazon and other places online, you can also ask your pharmacy- Mepitel 1 is what you want). Other than the cost there is no downside to trying it, its just an expensive bandage- you want to put it on and leave it on, change it infrequently. Cover all the areas that are damaged from radiation.

  • Lita19901
    Lita19901 Member Posts: 211
    edited September 2017

    Cherry - What works for me when that anxious feeling starts to overtake me is to do something that requires the use of my hands and my brain at the same time. For me, it's making dolls. Cooking and gardening work, too. I think it's because I'm using two parts of my brain at the same time which makes it harder for the anxiety to get in.

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    Thank you Hap and Lita

  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2017

    Thank you deni1661. Glad the Center worked for you.

    Vicky

  • kae_md99
    kae_md99 Member Posts: 621
    edited September 2017

    soxfan,

    we use mepitel in the hospital with cuts and superficial wound all the time. maybe its worth to give it a shot. its a premedicated film with holes in it so skin is able to breathe. per protocolin the hospital i work at, it can stay for 14 days

  • Suburbs
    Suburbs Member Posts: 429
    edited September 2017

    Hi everyone. I am wondering if anyone has 1.) completed herceptin in the last two years and 2.) pursued the idea of continuing with nerlynx. I checked again and my MO said we will not rule it out and will decide when I am done Hercrptin. I was happy with that.

    I did some more research on PCR and lymph node PCR and learned that a PCR after neoadjuvant chemo is not really a prognosticator of disease free survival or overall survival when one is triple positive.

    My greatest fear is recurrence. I don't care about the nerlynx side effects because the Arimidex for 10 years is already going to make the next 10 years really fun. I just wondered if anyone pursued the topic since the last time we all discusse it here

  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2017

    All the time Suburbs... I ponder what I should be doing now that Herceptin is over (14 August 2017). My current MO does not think the side effects are worth this drug, Nerlynx . He didn't have his boobs amputated and sat in a chemo chair for a year. I did. I wonder ...should I pursue this or not.

    I finally got the brand name Arimidex and have hardly any side effects.

    Vicky


  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    Suburbs, my oncologist said no, was not worth the side effects but I already said it before. What is about nerlynx that you want to try it? I admit I have to read on this subject.

    Cherry

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited September 2017

    suburbs my MO also said no, no way. Said the upside benefit was tiny and the side effects were horrible.

    On the depression topic, one I am far too familiar with, just remember if you are premenopausal and take tamoxifen, you have only three choices for antidepressants : Celexa, Effexor, and Lexapro. The others all interfere with your tamoxifen. Your only other choice if those don't work would be to go on an OS drug and take an AI.

    I'm exploring the elavil angle. Took it for years when I was young. Most docs today don't know much about it so mine is researching it..

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited September 2017

    Tresjoli2, I have been prescribed Mirtazapin Actavis, the active substance is mirtazapin. I checked the active substance in Celexa and Lexapro and tey contain citalopram. I got it from the psychiatrist in the clinic that treats me and when I asked her when can I stop she told me that I am going to need it while on Tamoxifen. Do you have any info on Tamoxifen interfering with another anti-depressives. I would really appreciate it.

  • moodyblues
    moodyblues Member Posts: 470
    edited September 2017

    Suburbs.  Nerlynx, I feel the same way Vicky does...unsure to pursue it or not.   I think about it even though my MO said that the benefits weren't worth the severe side effects.   I am going to ask my old MO after I am through with chemo, I want his thoughts on this as well.

    Melanie



  • debiann
    debiann Member Posts: 1,200
    edited September 2017

    Lita, you are so right about how keeping busy keeps the anxiety away. When dx'd I was working as a special ed teacher in a high school. I "pushed in" to algebra and English classes which were often boring. My mind had time to fill with all kinds of anxiety and worry.

    This year I switched jobs. I now teach young students with autism. They are the BEST aniti-anxiety drug! My day is filled with dancing, singing, art activities, etc. No time to think about myself at all. I get a lot more movement in my day, too which is really helping the aches and pains to go away.

  • Soxfan75
    Soxfan75 Member Posts: 115
    edited September 2017

    meg2016 and kae_md99 - Is Mepitel prescription only and does it adhere to the wound? My skin is raw and peeling under my arm and the thought of having to peel off something stuck to it makes me cringe. It was bad enough with the bolus (sp?).

    I did have my last radiation treatment today, so thankfully my skin can begin to heal. I'm just impatient, I guess. Your last radiation is like your last chemo... you want to celebrate but you're still dealing with all of the devastating effects to your body for days and sometimes weeks after.

  • kae_md99
    kae_md99 Member Posts: 621
    edited September 2017

    soxfan,it does not adhere to the wound. maybe ask your radiation onco about it? sorry for the side effects of radiation...

  • Soxfan75
    Soxfan75 Member Posts: 115
    edited September 2017

    Thanks kae_md99. I will!

  • coachvicky
    coachvicky Member Posts: 1,057
    edited September 2017

    Thanks for the article, HapB.

    I wish Cure had included the calculator.

    Vicky


  • shelabela
    shelabela Member Posts: 584
    edited September 2017

    soxfan, the Mepitel I have on is adhered very good. It's sticky on one side and stays put. Not sure about the peeling off part as I haven't removed any yet

  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2017

    Make sure you are using the most up to date PREDICT UK model, the 2.0. Here is the link in live form:

    http://www.predict.nhs.uk/predict_v2.0.html

    Ladies, if you include a link you can make it live two ways. Either use the link box in the tool bar above the text box (the one that looks like a capsule shape, the one to the right of the rectangle with the right facing arrow), or hit the enter button after you paste the link and the link should turn color. This allows someone to just click on the link rather than copying and pasting to another window.




  • wabals
    wabals Member Posts: 242
    edited September 2017
  • Lita19901
    Lita19901 Member Posts: 211
    edited September 2017

    Hap - it's assuming mastectomy or it's equivalent, ergo lumpectomy plus radiation.

    I thought the same 5% thing you are talking about when I first read the article but when I reread it I realized it's actually saying unless the patient's chance of living for five years is greater than 5%, adjuvant therapy isn't recommended.

    Interesting. I just realized Predict doesn't factor in progesterone receptors in it calculation. I'm wondering how much that would change things.


  • Lita19901
    Lita19901 Member Posts: 211
    edited September 2017

    Hap - what I find even more disconcerting are the 10 year statisticsfor our age. Yikes!

  • moodyblues
    moodyblues Member Posts: 470
    edited September 2017

    HapB Thanks for sharing, it is an interesting article.  Makes a lot of sense.

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